Osteonecrosis or Avascular Necrosis (AVN)

Written by

in

From about age 6 I had always been playing football (soccer). It dominated my life for the next 15 years or so and I was quite happy to allow that. My time on the field started to wane when I began traveling the nation for my ex employer IBM. Six days a week on the road is not conducive to exercise or organized sports and as a result I gained quite a few kilos. I think I weighted over 90 kilos at one point. (multiply by 2.2 for your inferior “standard” weights system) I decided this was not acceptable and decided to join my friends in triathlons to get back into shape. It was at this time (two years ago now) that I found out that I had to give up football for the rest of my years as those trixsy doctors diagnosed me with osteonecrosis which translates to BONE DEATH!

Osteonecrosis is when your bones have a restricted flow of blood and they are unable to regenerate themselves. All the time your bones are dying and rebuilding, but alas, mine are not. For me it is located at the top of the femoral head inside the hip joint. A good summary can be found at http://orthopedics.about.com/od/osteonecrosis/a/hip.htm. There are much more sites talking about this subject but none really go past the information explained here.

When I ran, I could only last about 20 minutes before I had some serious pain start in my hips. I thought it might be a hip flexor problem but it felt more internal. I went to the doctor and told him the problem. I had X-rays, then MRIs, then more MRIs, and initially I was told that I had torn a ligament inside my hip joint called the ligamenteres ligament. This ligament is used while you are an embryo to supply blood to the legs but is not used once you are fully developed but still remains. They decided on arthroscopic surgery to remove this ligament and all should be solved. I was in and out in a day and I thought my life would be back to normal. I went to physical therapy every day for about 6 weeks at an amazing place called Orange County Impact Rehabilitation which is run by a marvelous person by the name of Willis. During this time I would get stronger and stronger but be sure not to do any real exercise outside the clinic. This was hard for someone like me to do and I started to run again after a few weeks. After which my leg would be extremely sore and I would have to go to Willis and tell him what I had done and he would shake his head in disapproval and we would start again. 8 weeks went by and no real improvements and I went back to the doctor. More MRIs and it was now apparent that it was not the ligament but indeed it was osteonecrosis. On the MRI you could see a dark quadrant in my femoral head showing dead bone. I was crushed as this was exactly what I did not want to happen. I had done my reading and knew there was no cure and the ultimate solution was a hip replacement.

My doctor was one of the best in Orange County and his words to me every time I went to see him was to just go for as long as you can and when I could not bare the pain anymore, they would look to surgical solutions. They will not give me a new hip since I am too young and would likely need two or three replacements in my life due to current hip replacement technology. Other options are to have holes drilled in my femur to promote blood flow or even take shin bone and inject it into the hip bone. All of which have below 40% success rates. So what the fuck?

Now I can just get an X-ray and the problem can be seen. I prefer MRIs really since I do not enjoy laying under an X-ray machine that is several inches away from my man tools and zapping away. It does make for a funny moment when I am with the doctor looking at the X-rays and he is pointing out the affected area and there is a very clear image of my penis he is trying to ignore. Did you know that one air plane flight is the equivalent of 15 X-rays? So I was told…

As for how it was caused, they do not know. Steroids? not likely. Alcoholism? I drink but no where near enough or for long enough to be considered an alcoholic. Blunt impact? Possible but who knows when that would have happened. I started to notice hip pain at university during my 8 hours a day of playing football with the collegiate team. Maybe it was too much for little old me.

But not to be held down, I have adjusted. Evident in some of my past blogs, I have picked up cycling in an extreme way. I ride at least 100 miles a week and try to race regularly. Thank you to Willis for encouraging this past time. I find that if I do not cycle, my hip will start to hurt again so I long for many hours on my saddle when I have been away from it for even several days. I also swim quite a lot as well which causes no pain. Basically I cannot do anything that gives my legs a lot of impact. Yoga can be very nice as well and I stretch everyday. Even walking can be a bugger sometimes. I have always been a fast walker and love to be that guy knocking over people as I squeeze through crowds but I have toned down my pace to avoid enduring pain.

My weight is back to a modest 75 kilos and I feel great. I do not look forward to the days ahead when I will be a cripple in a wheel chair trying to play tennis or volleyball but I will deal with that when it comes. For now, I just wait for medicine to advance. Maybe I will end up being one of these guys riding a hand powered bicycle…

I purchased a document online about a grafting procedure. At the time of my diagnosis I was hoping this was the end all solution. But the document was a waste of money for me. It is from the University of Duke by doctors that anyone reading this article has probably heard about since Duke is supposed to be on the cutting edge of this procedure. The dates are old and the results and their percentages are dismally low. Too low for my liking. There is one comment below from a lady who did this and sounds like she is still waiting for it to kick in so do not expect immediate results. Anyways, to help this developing community out, here is the document that I purchased for all to read and understand. If anyone has any other documents that might be helpful please feel free to email me them at [email protected] and I will post them here.

Duke AVN Bone Grafting

Helpful Links

A few readers and commenters have been very kind and eager to help this growing community and support group. Here are some links and docs that I have received.

Comments

324 responses to “Osteonecrosis or Avascular Necrosis (AVN)”

  1. Caro Avatar
    Caro

    pobrecito!!

  2. M. Liz Avatar
    M. Liz

    I was diagnosed w/ osteonecrosis july 1

  3. M. Liz Avatar
    M. Liz

    July 19, 2009 @ 11:45 pm, Atlanta Georgia usa, 1 yr w/ osteonecrosis in my hips and 6 mos w/ l-hip replacement. r-hip probably coming up next. knee arthoscopy plica lining repair, mothers day 2009, now august L- knee meniscus repair. I work out pool therapy for 1 hr, 3x wk, gym w/ wght and treadmill 10mins 3x week. Was a nurse working and started limping last july 2008. thought i pulled a muscle. not that lucky, like my new hip, no pain. there is some pain starting in r-hip. make the best of activity, i have lost 5lbs 2 wks, keep strengthening, and moving as much as possible. no history for causes. unknown cause for me, 48 yr old female. I was a dancer. miss dancing. started journal writing for therapy. please email me [email protected] m.liz

  4. M. Liz Avatar
    M. Liz

    will try yoga and oh, please do try water pilates and water fitness, it is great.
    i am now a water girl and upper body work out, and recumbent cycle helps.

  5. luke Avatar

    Impressive M. Liz, keep at it. Anybody who would like to chat about this please feel free to email me at ollett at gmail.com .

    Something I found while doing research for this is that the communities and associations are absolute rubbish. I tried to join the AVN association and got no response. As I mentioned the reading was not all that great and tended to be very repetitive. I even purchased a PDF document, something that goes against all my computer morals, which was not all that great. It was about bone grafting from shin to hip if anyone wants to read it.

    Tour de France winner, then loser, Floyd Landis, had osteonecrosis. He may not be the ideal spokesman since steroids is a direct cause of this they think, and he got his victory removed from him after being caught with steroids. None the less, he WON the freaking tour de france with two shattered hips that he had replaced immediately after the race!

  6. henry Avatar
    henry

    I’m in the unusual position of being a medical doctor (not orthopedics) and diagnosed with bilateral idiopathic avascualr necrosis (meaning both sides and not sure why). Like you I was a runner and also a hiker/backpacer. Not sure when all this was diagnosed or what stage you are in but in the early stages the vascularized fibular graft has a much higer success rate that that when done by a team that does it frequently. I had both hips done at Duke in 2007 and although it was tough I am pretty much up to doing anything I want. Admittedly it is not always successful but potentially worth consideration. There are limits in terms of age and certainly less successful with advanced stages.

    1. luke Avatar

      Thanks Henry for that amazing comment! From my reading, it sounds like the guy at Duke is dominating this arena, I think he even wrote the paper that I bought regarding the grafting. Can you tell me more about your experience with this procedure? The before, the after, how long to recover, the extent of your activity now, anything recurring, etc? I would say I am very early onset of AVN since I can do all the things that I do. I am 26 so hopefully the age thing is not an issue either.

      1. luke Avatar

        From the commenter Henry which I think is very wise and valuable information. After reading the website I have concluded that I keep trucking on until I cannot reach 45mph in a sprint anymore….

        Sorry to hear about your diagnosis. I was considerably older, 46, at diagnosis. That was two years ago. They will not do you if you are over 50, or have sickle cell and a few other exclusions. When I was considering the surgery they were able to give me a prognosis based solely on x-rays. They do better than anywhere else as they started the procedure and had done 3000 or thereabout when I was there in 2007. If you have not had any collapse of the femoral head your prognosis is reasonable but, admittedly, not 100%.

        It is a big surgery with a long recovery. Mine were done at 3 month intervals and there was 6 weeks non weight bearing followed by 6 weeks partial weight bearing after each. I started working out formally with a trainer (biking is fine and encouraged) even while I was on crutches. Even then it was a year before I was pretty normal and two before I felt mostly right. I still have some pain (variable and not intense and nothing similar to the original pain) but have recently gone on a backpacking trip, going up to ten miles in a day! I have not really tried to run but I will be honest that I am not really sure that is an option for “me”. I still work out religiously and I can do very well on an elliptical trainer, spin bike and briskly walking on a treadmill. My orthopedics (local and at Duke) have said I could do anything I wanted to. I do know that people go back to running. I am not so sure about soccer as you will no longer have a fibula and the inversion and eversion of the foot would probably not be as good as before but I suspect no real reason you couldn’t try if all went well.

        From my perspective what your real goal should be is to avoid or at least delay hip replacement for as long as possible. As you are aware they don’t last forever and you don’t want to start that process any sooner than you have to.

        Dr. Urbaniak who pioneered the surgery and who did mine has retired for the second time. He was clost to retirement when he did my operations but my understanding is that there are four surgeons anyway. Two to harvest the fibula (ouch) and two to prepare the graft site. His protégée Dr. Aldridge is still there and has a good reputation.

        The Duke patient information is found at http://www.dukehealth.org/HealthLibrary/CareGuides/Orthopaedics/patientresources/fvfg/fvfg.pdf and, no, I am not in any way affiliated with Duke nor do I have a vested interest in promoting this surgery. This would be something to be weighed very carefully and approached realistically.

        Best of luck with all this.

  7. Gys Avatar
    Gys

    Sorry to hear about your diagnosis. Hip resurfacing could be helpful to you. Floyd Landis had this done, which does not get rid of your whole hip and may let you be active in many ways. Just an FYI: Landis took corticosteroids during the Tour de France, because of pain. But bicycling officials were aware of this. He had a femoral neck fracture years earlier which was very likely the cause of his osteonecrosis. His testosterone to the hormone epitestosterone (T/E ratio) was too high, and that’s how it was found out he was doping. But this doping did not cause his osteonecrosis.

    Check out this link regarding the Birmingmingham Hip Resurfacing:
    http://www.birminghamhipresurfacing.com/ and this other where it lists physicians experienced with the procedure: http://www.surfacehippy.info/

    I have considered this myself, but I still haven’t had kids and some physicians do not recommend metal on metal resurfacings for women of child-bearing age. Good luck and keep cycling. I’m personally saving for my first road bike.

  8. REZ Avatar
    REZ

    Hello, I am a 49 year male, also quite active as a youth and adult. Two years again I began having knee pain and was diagnosed with AVN. 15 months ago I had a double hip replacement at Stanford.
    I still experience intermittent pain, like a level 8 Charlie horse, about 3-4 steps from a seated position. This pain sometimes lasts for hours and varies in intensity.
    After the surgery, I was also diagnosed with pinched nerves at the L4/L5 and had cortisone injections at the sites, which did little. I since have found a more holistic chiropractor who has helped a lot. I am not sure if I should intensify my workouts or not.
    In this blog, I noticed two people mentioning that after 2 years of surgery, they are doing better. I hope this pain diminishes soon, so I can return to a more active life again, as well. Any words of advise would be great appreciated.
    Best wishes to all of you out there.

    1. luke Avatar

      I think some of the other commentors could provide more than I can. But I cannot emphasize enough how much cycling has helped my pain out. In fact as long as I am turning the pedals, the pain does not show up. Pick something that you find therapeutic, and stick with it.

  9. abhix Avatar
    abhix

    hi, i developed bilateral avn as a result of steroids. iv tried alternate therapies for around 15 months now, im considering surgery now and will be discussing it with my doctor soon.

    as a patient id like to say that ayurvedic treatment really helps, even after surgery for those of you who still have pain do try ayurvedic treatment if you get the chance.

    cheers!!

  10. abhix Avatar
    abhix

    also i developed a mild stage one necrosis in my right knee which has been taken care of with ayurveda alone. its perfectly fine now. anyone who is looking for an alternative to surgery should consider ayurveda (preferably in india)

    1. luke Avatar

      Interesting Vivek. I have never heard of Ayurveda until your comments. Seems interesting and as plausible as the high tech medicine that is shaming me right now. Do you have anything else to share about Ayurveda?

  11. Henry Avatar
    Henry

    Experienced Ayruvedic practitioners would likely be hard to find in the US but holistic medicine can certainly compliment “Western” medical approaches. As noted in my previous entries I am a physician who had bilateral AVN and underwent bilateral FVFG in 2007. After each surgery I had several sessions of Rekki which, for whatever reason(s) seemed to help me to feel better and stronger physically and emotionally. For anyone wanting to learn more about Ayruveda there is a radio program called “The Peoples Pharmacy” that devoted an entire show to this practice. This was an interesting introduction. It is radio show #748 and can be downloaded off the web. Also, don’t forget accupuncture (particularly you, REZ, which can also be very helpful for pain.

  12. abhix Avatar
    abhix

    ayurveda is a form of herbal healing. the treatment itself involves regular massages with medicated oils and some herbal syrups.
    ayurveda is native to india and is being practiced here since centuries.
    it can treat almost any ailment.

    it will also help post opp for better and quick healing and also with managing pain.

    like doctor henry says it may be difficult finding a genuine ayurvedic doctor in the us but if anyone want to come down to india there are some really good doctors who can definitly help.

    as for rez i suggest you try sujok acupuncture if you can it helped me greatly in my initial avn days

    also i have just started a blog about my experiences with avn. heres a link. http://avascular-necrosis.blogspot.com/

  13. Gurkan Avatar
    Gurkan

    I am a MD diagnosed of idiopathic bilateral AVN (2A and 1) of femoral head. I am searching for non-surgical solutions to this disease. So far I am trying HBO treatment. I will also implement ayurvedic remedies to it. I have seen a person who is completely ok without any surgical intervention. He was 2B or worse as far as I understood and advised of total hip replacement 5 yrs ago. I recommend to be positive about the outcome of the disease, I think this also matters. This guy has never accepted to become restricted and he succeeded. By the way he took Glucosamin and NSAIDS. I wish everybody total freedom. Please post here if you learn anything that will help others.

  14. gammawroxie Avatar
    gammawroxie

    I was diagnosed with a vascular necrosis of the hip and am having a total hip replacement on March 23, I also have nerve damage in my L5 and S1 nerve areas of my back . I am 50 years old. My pain has been horrible and sleeping has been a no win situation. Cane, crutches,walker none of which seem to help. I am on pain medication, but I am getting no relief. I want to cry it seems alot. I also have these miserable cramps in my legs and feet. If anyone has any solutions to help ease the pain, help with the cramps, and how to get rest PLEASE tell me.They say a major lifestyle change is needed, but did not say how to make and what to do for this lifestyle change. I have searched on the web to find answers,but I must not be looking in the right places. Your help is greatly appreciated.

  15. Abhix Avatar
    Abhix

    @gammawroxie,
    I have been dealing with avn of both hips for well over a year now and i have tried a whole lot of things. The best i have found is Dolo 650mg its a painkiller.
    As far as lifestyle changes go im no expert but try to cut down on salt,spices and diary. It may be difficult i know (im indian) but it helps.
    Also, iv been told that avoiding meat helps, but i dont know if it works coz im a vegetarian as it is.

    @Gurkan,
    There are many alternatives to surgery but how successful it will be depends from patien to patient.
    Ayurveda id say is your best shot at non surgical options.
    Id really like to know how far HBO treatment has helped and also what treatment did the guy who fixed his avn without surgery take.

  16. mayo Avatar
    mayo

    Has anybody heard about chinese herbal medicine called Osteoking for AVN?
    Just found it by googling… Anybody has any kind of experience with osteoking?

    please let me know ..

    Thanks

  17. GAYLE Avatar
    GAYLE

    I may be in the wrong place, but I have been diagnosed with osteoneucrosis of the Jaw 2 weeks ago. Due to mets. breast cancer, taking Zometa IV once a month for over a year. Also 10 months ago I had a tooth pulled. 2 weeks ago I had a what I thought was just a gumboil. Then I began to feel bone in the area. Went to the dentist who immediately sent me to an Oral Surgeon, who took many pictures and started me on some kind of mouth wash and amoxicillin. I have so many unanswered questions!! Most importantly, how long will I be able to work? How long does this go one til it has exposed all the bone it’s going to? I keep reading about “coping” with ONJ. What exactly does that mean???

  18. M. Liz Avatar
    M. Liz

    Excellent Book that helped me. I have AVN l-r hip, total hip replacement 2009 and 2010. I am 90 postop for the r-hip. The Book “You can Heal yourself”by louise hay and There is only NOW by scott morrison.
    I am doing fine, working out at the ymca treadmill, elliptical, pool therapy, upper body toning, and stretching. Small amount pain occassionaly. Idiopathic DX: AVN. This is a life time of adjustments. No Cure. Redo or Reundo to do. No Cure yet. THR gives quality of life for me to do my daily activities. Write your story some where. We are 1% of population to get AVN/ON. WOW! :-)

  19. M. Liz Avatar

    my doctor web site
    Patient education
    click on body part
    read info
    clickon another body part
    treatment plan, physical therapy to do.
    Excellent Websity

  20. sue s Avatar
    sue s

    Hi ive been diagnosed with avn of the knee mine is in the last stages but my age is against me as im only 41. I cant walk far now i miss walking my dogs and doing the things i used to do. I have to walk with a stick just for short distance now. I had one operation last year which was not a success my knee as totally collapsed now and the specialist in the uk dont know what to do. My knee is very painful as it locks and i have to push my knee back into its joint. Im told my knee is very serious does anyone have any advice for me as i just want to get back to myself.

  21. luke Avatar

    Sue, to be honest, your situation sounds bad and I wish there was a magic cure for you but I think for all those that are here reading this page, we have reluctantly come to the conclusion that we have been stuck with something that we cannot get rid of, merely cope with. Ultimately, I think the common theme to a lot of the comments to this blog and the blog itself is that for each person, there is a way to live within your confined situation. For some, it may be more confined than others. Sue, my dad does not have AVN, but he did have a completely new knee put in after some lingering problems after a motorcycle accident. He walked out of the hospital two days after the surgery and has never limped since. Do not fear, but embrace and conquer. Shitty answer I am sure you are not wanting to hear, sorry.

    My solution to this damn nuisance of my life is cycling due to it’s low impact. Swimming for cross training. Either of these work for you?

    A quick update from the author,

  22. sue s Avatar
    sue s

    Hi i would love to do cycling but my knee is limited in mobility and i can not bend it enough to use a bycycle. They told me 15 minutes of swimming thats all im allowed. As for a new knee they told me im to young and said to try and wait as long as i can as the more knee replacements i have in the future they said there may not be enough new bone to put a replacement on to and i would have to have a knee fusion something i would not want as i would never be able to bend my leg again. So im in catch 22. Im going to buy myselve a scooter so i can at least get around and take my dogs out.

  23. Angela van Doremalen Avatar
    Angela van Doremalen

    Hi!

    My name is Angela,39 years old, mother of 2 sons, and live in the Holland (The Netherlands). Via facebook I was linked tot this page.

    This is my story:
    I was diagnosed in november 2008 with AVN in the metarsal bones of both of my feet. Cause unknown. After 1,5 year non-operative treatment, they now operated me in May last by making hole into the bone, hoping that new bone will grow via the wholes to the gap what was made in my joint by the necrosis. They do not know what to do with me, they never heard of necrosis in the metarsal bone of the foot before.We now hope for the best that new bone tissue will grow. In Holland I did not find any case of AVN in both feet.

    I am looking for AVN patients who have or know cases of AVN in the feet.

    Regards and the best for you all

    Angela

  24. luke Avatar

    @Angela … To be honest, you are the first I have heard or read about with this problem in both feet. Ouch.I suppose that from your response that the hole drilling is not going so well? Did they mention about the technique to graft bone in from somewhere else?

  25. Angela van Doremalen Avatar
    Angela van Doremalen

    Hi Luke,
    Thanks for your reply. Oke, heard that before…umpf..I am one of a kind ! How nice this is…..
    The technique of the hole drilling is something my orthopead tried. I asked him about grafting bone from somewere else,because I’ve read about it in many US documents.But he never heard about this as a treatment for the feet. So I do not know if it is done…. It will last months before they can say if this surgery has results. New bone tissue has to grow, if not, they will get te joint out and fixate is, so that is my last station here in holland……..

  26. Kurt Avatar
    Kurt

    Hi there, like Luke I was also diagnosed with AVN at 26 (I’m 27 now). I’m just getting back on my bike (physically and metaphorically) now as was a keen cyclist and runner. The symptoms built up very gradually for me (over 2 years or so) eventually I couldn’t cycle without pain and decided to go to the doctor. I’ve not done any exercise for months and looking back I think I realise I was quite depressed about the whole thing (I even sold my beloved road bike). I’m cycling again now though and although I realise I won’t be as fast as I was I can do enough to be happy and Luke is right, keeping it moving seems to make it less painful.
    Part of me would like to have resurfacing or a total replacement now so I can have the next 15 years pain free and enjoy the prime of my life…

    ditto with Luke about doctors asking about steroid and alcohol abuse.

  27. Brad Avatar
    Brad

    Hi All!
    In 2007 I was diagnosed with FSGS of the kidneys. The Doctors then decided to put me on treatment with steroids(Prednisone). I was on it for 6 months. Did more damage then anything else, I even tried to persuade the Doctors to take me of this medication, but to no avail.
    I was seen at an Academic State Hospital which means you are seen by Student Doctors. It was never mentioned to me the repercussion of using steroids.If I was informed about it, i would have refused it. A few months later I was diagnosed with AVN of both hips. I was like 27 at the time. Had a decompression done which helped, and 2 years later the disease is back. This time with a vengeance. Orthopedic Specialist said I have two choices, either a hip replacement, or make peace with the disease and live with it as long as I can. Both options will have it’s pros and cons. If I go for hip surgery, I will have at least 2 more surgeries which might not be successful. If I don’t have surgery I will live in pain and will not be able to do most activities. Currently I’m using glyco-nutrients and some other supplements. Seems to take away the pain and inflammation. I do have some good movement with the hips. I hope for the best, and wish you all the best, as I know it is not easy to deal with this condition.

    1. luke Avatar

      Well ain’t that just the bitch? I must say that sometimes I get quite angry with my future even though it hasn’t happened yet knowi ng that my bones are walking the death route.

      I was told that if I get surgery that I would be able to run properly again. But when idelved Into it more, the doctor finally told me that that may be the case but it depends on what I was used to. I was highly competive in soccer and am now highly competitive in cycling and competing at high levels in both sports. To get surgery now would mean that I could run but not play soccer like I used to. It would also mean that I would not be able to cycle like I do and I would have a long post surgery recoverytime and I would be paying shit loads of money and I would have to be getting more surgeries down the road. So I am happy towait this out until I am at the point if some of the commenters on this blog.

      To everyone who has left their experience here, thank you. I wish I had more to contribute to this discussion other than I feel for each and everyone of you. I recently had a clandestine X-ray here in chile and was able to clearly analyze my own X-ray as the dead bone is growing. Oh well.

  28. vivek Avatar
    vivek

    Hi,

    I was diagnosed with cancer 3 years back and started my chemotherapy, to keep my body from breking down I was prescribed PREDNISONE (the evil bitch). I was on steroids for a whole year. I put on 20kgs and at the end of a year when I finally got done with my cancer treatment i was diagnosed with avascular necrosis (AVN)in my left hip.

    I started exploring all my non-surgical options to treat avn, three month onn BOOM the other hip gets necrosed as well. For a whole year after this I tried all available non-surgical treatments.NOTHING HELPED.

    After 18 months i finally went in for surgery. on 14 june 14 i had my right hip operated. Even though i have some restriction from my left hip i can feel a world of diffrence and its not even been 6 weeks from the date of surgery.

    Anyone who is putting away surgery for whatever reason, it’s not worth it. The pain the discomfort no good is ever to come out of it.

  29. Vivek Avatar
    Vivek

    @ Brad.

    I got a metal on metal hip resurfacing, but before the surgery I got a kidney test done to check that they are functioning well and will have no problem in eliminating the metal ions released by the implant into the blood stream.

    The doctor had suggested that if my kidney function was not upto the expected levels I could have a ceramic implant and avoid the problems of metal ions all together. you might want to look into that.

    All the best.
    Hope it woes well.

  30. phil chilcote Avatar

    this is a great link, i was diognosed with avn about 6 months ago both hips are now done last one right hip done about 3 weeks ago two hip replacments in 4 moths im only 44 have a 8 year old son i cant wait to ride a bike with him again still in a lot of pain yet but you folks give me great hope they want to do both knees soon will have to see if this works out thankyou this site has given me hope

  31. Liz Avatar
    Liz

    Luke,
    thanks for sharing…. and keeping the community

  32. luke Avatar

    Phil, I must say that I feel like you are my future and the age ranges sound about right. I am going to hope for a new cosmic laser medical device to be invented in the mean time but your candid comment filled with optimism and hope makes me feel much better and not so scared of what is to come.

    For all those who have subscribed to these comments, I have added a document to the end of the blog post about AVN Bone Grafting at the University of Duke that I purchased. This community deserves to read it.

  33. wekab Avatar
    wekab

    Hi, I am doing a lot of research on AVN and I came across your site. I am not the only one that is experiencing pain. I was diagnosed with AVN in both of my hips April 2010. I have sickle cell and that’s what caused it. I know my God is a healer but no one understands my pain. I was a teacher and I am currently looking for another job that is not so stressful and I one that I do not have to be on my feet for a very long time.
    My AVN bothers me mostly when I walk (I walk with a limp) and when I get up from sitting. My doctor is so gunho about a hip replacement, but I’m like NO!!! I’m only 31 with no kids, I dont want a hip replacement. Doctors are so quick to tell you their options without experiencing the pain and the test and trails of your disease.
    I went through 18 sessions of physical therapy and feel like it has gotten worse. I do water aerobics 3x a week and that releaves my pain, but I can’t stay in the pool all day (I wish).
    What do you find really relaxing for your AVN (anyone)
    I am also looking into Osteoking???
    Thanks for listening

  34. Vivek Avatar
    Vivek

    @ wekab

    hi, I turned 22 on 11 june and had my hip resurfacing on 14. I will be getting my other hip fixed by next month. I tried all available non surgical options inspite of my doctors telling me there was very little (no) chance or it working in my favour. After dealing with pain long enough I went ahead with the surgery. Its almost as good as before. I can really feel the difference since i still have avn in my left hip.

    Dont rule out surgery completely, keep your options open. look into hip resurfacing specifically.

    I hope things workout for you. All the best.

    ps: soon after my diagnosis my doctor strictly adviced against any physical activity that would strain my hips. Physical therapy may not be such a good idea.

    @luke Thank you for this space. Im sure it helps a lot of people in a lot of ways.

  35. wekab Avatar
    wekab

    @vivek
    Its just nice to know that someone understand how I feel. I’m being prayeful about hip replacement surgery. My doctor is like “well, the damage is already done”, but if I decide to go through with the surgery I am going to be the one that has to recover, not him.
    I needed that tip about physical therapy before I went through 18 visit of intensity. I feel that I got worse since p.t. because they focused so much on the hips. Nice to know. Now I’m just going to focus on gaining upper body strenght and continue with my water aerobics and thank goodness that I found this website so I can share my growth and frustrations. Im staying positive. Thanks for the support.

  36. phil chilcote Avatar

    i was bone on bone with cracking both hip done in three months i am getting stronger every day hang in there folks it does get better after surg god blessed me with a great doc i just wish there was some more research on AVN 44 years old i raise a 8 year old son by my self im doing so much better than before surg i am not gonna lie it hurts but you have to keep going hang in there everyone!!!!!!

  37. Vivek Avatar
    Vivek

    @ wekab.

    The recovery is not as difficult as the decision to go ahead with the surgery. The first week might be difficult, but after that the pain starts to fade away and your hip gets only better.
    As time passes the avn only gets worse. If you decide to look into surgery as an option in the early stages you have more options in terms of implants that the doctors can use.
    If you are in the early stages you should discuss BHR and BMHR with your surgeon.

  38. indiauser Avatar
    indiauser

    I’ve been diagnosed with AVN & I’m 29. Undergoing homeopathy & Ayurvedic treatment. Has anyone else tried it? I’ve also heard about osteoking when doing a search on google however not sure if it’s truly a medicine or another money making internet scam.

  39. wekab Avatar
    wekab

    @vivek~
    I went to Minneapolis this past week, and I have been thinking a lot about the hip replacement surgery and I’m 95% sure that I’m going to go through with it!!! I couldn’t enjoy Minneapolis like I wanted to. I went to the Mall of America and I had to rent a scooter (although FUN!!!, I don’t want to live like that). I am going to try to postpone the surgery as long as possible b/c I have to finish up my last year in the master’s program and I’m getting married next June!!! I guess Hawaii is out the picture :(, but we can do that one our one year. I am thinking about next September but we’ll see. I might just have to put off school for a year :( but I have three weeks to decide that
    I was reading that for every pound of weight you have extra on your body, that is three pounds of extra stress on your hips. I need to loose about 15 pounds and that would feel like 45 pounds off of my hips. Good information out there.
    I only had this for 8 months but it feels like forever, what is BHR and BMHR?
    I am very positive about my situation and not that nervous about the surgery as I was in the past. Thanks for the support!!!

  40. wekab Avatar
    wekab

    @vivek
    I posted a reply but I guess it didn’t take. You are a male and hip resurfacing are more successful with males. I’m doing my research and I’m more than likely going to do the hip replacement next year. I have to see if loosing weight (about 15 lbs.)will minimize some of the pain. thanks!!!

  41. Vivek Avatar
    Vivek

    @Wekab.

    I an 22 male. my right hip as I told you I was operated on 14 june this year. Its almost as good as new now. Working on strengthening the muscle tissue now.

    From the date of surgery you really need only about 3 weeks time to be able to get back to life i.e college and friends and so on. You will need to use the crutch for a bit but you will begin to forget it at places you go to, thats a good sign. You certainly don’t need to put off school. My surgeon has a lot of international patients and they all fly out of India a week after surgery.
    BHR & BMHR are types of implants that are much better than the conventional ones used for hip replacement.
    Look it up on google. Heres my surgeons website you could have a look.
    http://www.hipresurfacingindia.com/

    hope you get through your remaining 5% soon.

  42. Vivek Avatar
    Vivek

    @ Indiauser.

    hi, im from bombay I tried homeopathy first then ayurveda along with different diets and acupuncture and acupressure also some fruit extracts for the two years I tried to avoid surgery. Then we came across a Chinese medicine website with tall claims saying its affiliated with the uk army and that the soldiers are using it to and such. I have relatives in the uk so they checked it out from their government information center which said that the website is a scam. Also I have looked all over the Internet, but I have never found anyone who has benefited from osteoking. Be careful when it comes to Chinese meds.
    NOTHING HELPED WITH THE AVN. now I have got one hip operated another is planned for next month. Im doing fine.
    Do you know the cause of your avn?
    Do let me know where you are from, im the past couple of years I have tried doctors from almost every part of our country.

    All the best.

  43. wekab Avatar
    wekab

    I check back here often and no one post any more. I have a follow-up appointment with my primary doctor on monday for him to send me a referral for orthro. I need to get this ball rolling (literally and figuratively). Tell you how it goes. Its to the point of me being tired just from walking all the time so something has to be done.

  44. Günay Avatar
    Günay

    Hi everybody.

    I’m from Turkey. I first diagnosed in May 2009 and started to use Osteoking in October 2009. I highly recommend it to everyone as it helped my condition a lot (AVN stage II and III). I had MRI checks and it showed that Osteoking has a curative effect although doctors don’t beleive it.

  45. Mark Avatar
    Mark

    Hi there, I was originaly diagnosed with AVN (Right Hip) in Dec. ’09 and I had a Vascularized fibular graft on Augest 18th, 2010. Man, that surgery hurt… :0 But, the healing and road back to normalicy had to start somewhere. After a week or so I left the hospital, and was pogressing at home pretty rapidly. Then…OUCH!!!!

  46. Mark Avatar
    Mark

    Yep, I let my concentration lapse for a second and accidently stepped on “the leg”. What followed was an instantanous crumpled mass ‘o man whimpering helplessly on the floor. In a sparsly populated apartment complex at 6 am none-the-less. uggh Has anyone else had this happen? ….Glad to say, im writing this from my apt. after a second sucessfull surgery, although the I gotta go back to the Doc’s on Thursday( had staples out today) as he is monertering a possible infection. At least it’s football season, and yes, I’m a Detroit Lions Fan

  47. Luke Avatar

    @Mark. Holy shit. That sounds horrible. DId it collapse inside? Mark, I would be very interested to keep up with your progress, as would many people here I gather. We would all love it if you could follow up every now and then and report how this cutting edge surgery works out.

    @wekab. Ya I wish I had more answers. My answer I have said several times. Just no impact and cycle. A few people have mentioned this Indian Love Guru treatment but I have not heard much past the mention. Unless they were spam comments I should have rejected.

    I guess I am still young, but sometimes I feel like I never have a problem as I live my life of no running. But at the top of a giant Bolivian hike recently, the hip woke up and the feeling of incurable frustration came back to me. Thank you all again for being such an active commenting group and sharing your stories. They are a lot of help for a lot of people.

  48. wekab Avatar
    wekab

    @Luke, hiking for me right now is out of the question. I’m afraid to even go on the treadmill b/c when I step down it feels like my bone is crushing. Water aerobics is no longer helping but I still must go. I have an appointment with the orthro next month and I’m going for the surgery. I’m young and I have a lot of life yet still in me. I just want it to be as painless as possible.
    ~Weka~

  49. Vivek Avatar
    Vivek

    I had just sent in my x-ray to my surgeon for a 3 month post op check up. He’s siad the hip is doing fine. I have realised in the past months of reovery that that giving yourself time to heal is really important. We are held back by whatever problems and cant wait to get back to normal life at the least, that caution really takes a backseat.
    Im in constant touch with my physiotherapist he’s always sayin lets take it slow it usually pisses me off but man after reading Marks post im really scared and thankful. I really dont think I have it in me to deal with such a situation.

    @ Luke. For activities which are more straining on the hip its is really important to have a very strong muscle structure to support your hip. Try to build muscle for more strength. Hiking and long walks are very important part of my life. The outdoors make me feel like there is so much more and theres always better times to come. I still cant walk for very long after having one resurfaced hip. I sure hope after I get my other hip fixed as well I can get back to the great outdoors. Goodluck.

    @ Mark. I hope it works out for you. Goodluck man. Take it easy. Do keep us posted. Your posts will be very helpful for post operative care.

    All the best to both you and The Detroit Lions.

  50. wekab Avatar
    wekab

    Hi
    @vivek~ I have decided to the the replacement. I have an appointment with the orthro on the 4th. I couldn’t take the pain any more and I am limping to my classes and it is very painful :( I am to the point of taking an Aleve before classes on Tuesday/Thursday and I also wear a hidden heat pad on my right hip. The AVN is in both hips though :\ Water exercise works when I’m in the pool only:|,but it does helps and then I have to walk on land.
    After I started school the 5% came to me quickly. Thanks for the support. I will keep you posted on what the orthro doctor says.
    Congrats on your speedy recovery :)

  51. Vivek Avatar
    Vivek

    @wekab- Its great to hear that you have decided to put the pain behind and move on to find a sollution. Before you meet with your doctor do some research over the internet on various hip implants available. As I said earlier do look into hip resurfacing specifically. I did a lot of looking into before I made the final call. I consulted several doctors with different openions. What I realised was that you want to get an implant that at best resembles your anatomical hip hence allowing to have activity levels closest to those of a normal hip.

    All the very best.

  52. wekab Avatar
    wekab

    @vivek~ I have all kind of websites under my favorites. I feel like I know more about this than my sickle cell and I had that all of my life. I can’t do hip resurfacing. I have looked into that and found that it doesn’t come recommended with AVN or women since its a very new procedure. I have to get both hips done that’s what I’m taking to the ortho for on the 4th. The pain is more frequent in my left though. I am now walking with a walker :| now. but I’m managing better around campus. I saw my primary doctor on last Monday and he said that I would do fine with a replacement. I see my oncologist in November but he told me to get in done back in July. The 4th of October can’t come soon enough. I will keep you posted.

  53. Vivek Avatar
    Vivek

    The 4th of October. All the very best.

    Do also look into an implant called the BMHR. I’m sure the doctor will figure out whats best for you. Its best to just trust the doctor and let them do their thing. Check out http://www.surfacehippy.info/hiptalk/ they have a lot of info on a lot of things.
    Don’t worry too much about the walker I used to use one before the surgery, now we dry clothes over it.
    I’m curious where are you from and what are you studying?
    I’m sure people on this forum have more than just hip pain in common.

  54. mark Avatar

    Does anyone remember the begining/premis of Fight Club? Well, if you do, maybe you’ll get a “kick” and a chuckle at The irony. Humm, well, this started about 9 days ago… (Insomnia…NO sleep longer then 2 hrs at a time) actually, its only because of the constant, though mildly intensive achy-ness and discomfort. Funny enough, I thought I coulf Tuff-it-out and drasticly reduce my meds, get my head un-fogged and finish up my senior year in college; hurdling all obsticles by shear willpower. ummm, well I havent made it to class yet… @ Vivek and Wekak, recovery is more then just physical, huh? This is more then I bargined for. Doc told me that if I fell or put weight on the leg again, It woulnt be able to be saved by a 3rd surgry. Scarry… I go back to the docs next thursday, hope to report that the infections gone then.
    I realize that it’s not “me against my AVN” … we are the same, and the sonner I accept that fact along with learning how to function as “him”, the sooner I can “be back to normal”… as opposed to “beating” it.

  55. Vivek Avatar
    Vivek

    @ Mark~ Recovery is maybe one third physical. You got to be really mentally strong. Im blessed with a brother who is my ultimate pillar of support. Three years of chemo and radiation and the pain and the puking and being bald and bloated from steroids and then AVN for the grand finale and I have one more surgery to go. If not for my brother I’d be in the mad house by now. I watched a lot of tv series and movies to get my head totally out of my life.

    Also do tell me what surgery you got on your hips. Is this where the doctor drills a hole through your femur to increase blood flow?

    Keep the faith man. Its really important to get a good nights sleep. I tried to be superman and cut the sleep and pain drugs for a while, it only lead to more complications.

    Also it might not seem like a lot but having people (family) arround make the biggest differnce of all. If not for anything, you have someone to talk to or even fight with.

    Like my friend puts it.. Be Verbal go Herbal.

  56. wekab Avatar
    wekab

    wow @mark. I woke up with pain last night and I had to text my boyfriend a sad face around midnight. He called me and asked me did I need to go to the doctor. I told him no. What can they do??? I’m very thankful for my support system as vivek was saying. I had sickle cell since birth and i’ve been in a out of the hospital. I’m 31 and if I didn’t have that support system (my sisters, my and dad and my church family) I know I would be worse off. I’m blessed with an amazing boyfriend that is very understanding and patient. I have a group of solid core girlfriends that are amazing also and have been there with me through recent hosptalizations. I agree with Vivek your mind has to be strong to get through the pain. Sickle cell and now AVN(result of sickle cell). I can beat this. I have AVN but it does not have me!!!

    I’ll be able to take pain pill after my wrist surgey on Tuesday but I don’t think I am unless I’m crying out for pain (like last night). My AVN hurts me most when I get up, walk (with a limp-that cause back pain) and sleep.
    @vivek~ I live in San Diego, CA. I’m getting my masters in Education. I was a teacher for three years but I had to give it up because I had a major crisis (not fun). After I graduated next May and I should be better after once hip is done, I’m going to look for a part time something??? LOL of course working with kids.
    @Luke~ this site has been a support to me. Thank you!!!

  57. Gurkan Avatar
    Gurkan

    Dear AVN sufferers
    I am one of you. I recommend you not to go to hip placement. Because if you can get over the painful phase of the disease which is about 1 to 2 years. The bones goes to remodelling itself and you will be through it.This is a disease that teaches patience and reconnecting God. Clear your mind from all negative thoughts. Be grateful of whatever you are still able to do. Keep your hope high.
    Even everybody says the reverse, it does not matter your femur head crushes or not (phase 2 or 3) the only thing you must be concerned of is to preserve the ability of move your leg (despite the pain).
    Here are the remedies I have learned through my path.
    Escape from surgeons, it will be your pleasure to see them saying oh how come you had..
    Move your leg (gently slowly) but move..
    At the bed keep you legs up for 5 minutes while massaging your leg.
    Hyperbaric oxygen treatment works, especially when you have acute pain. It relieves oedema (congestion that causes pain). Get rest well. I used some medications but I dont want to list them her in order not to interfere with your doctors regimen. Swim but do not exagerate. When the pain phase is over then you can walk with clutches. Let the pain be your guide. Listen to your body, make good deeds and pray with your whole heart, you will be running again ..

  58. mark Avatar

    Wheew, made it to class today, and it’s a real mental milestone. My insision hole finally stopped leaking and the deep, intense(annoying-not “pain”) achiness was gone when I woke this morning. I attribute it to Kefflex and Cipro clearing up the infection. Actually, I fell asleep around 7 pm yesterday, after a full day of football watching and 12 tasty adult beverages ;)

    @ Vivek… I had A “Vascularized Fibular Graft” where they took out my fibula (shin) and drilled a hole through the top of my femur into the pelvis socket and connecting the new healthy bones blood supply in place of the lost one. It is a pretty rare surgery due to the Micro skills needed by the Doc and the much longer recovery time (6 months non-weight bearing) . It was pionered at Duke if you’d like more info.

    @ wekab I’m at Eastern Michigan University finishing up my deg in Construction Managment w/ double minor in buisness and urban planning. Plus I turned 32 on Aug 22, so im right with you on the challenges of juggeling school at an “uncommon” stage in life with the resposibilties that come with said “stage” ….like passing down the secret of “the perfect tight-rool”, quoting Will Ferrel ad-naseum and most importantly constantly reminding myself to refrain from sppeking of what I “used to do”LOL .

    Unfortunatly my support system is nill, then again its by choice i.e. doubters/with negitive attitudes have been shunned and all my buddies are all grown up with there own famlies. Plus I got an Image to uphold…. Not really, more like a swager and right now I’m 5 months out from even mustering a limp. :) Like a lighter i have says, “Pain is only Weakness leaving the body” !!!

    Life is a journey, not a destination.

    Mark

  59. Luke Avatar

    I pleaded with my doc to say the grafting was what I needed but he turned into a big black guy with a mohawk and said to me that he would pity the fool to have that done at this point in it’s development. Mark being the fool, albeit brave fool in this case. In my opinion he has stolen the blog form me since I will eagerly hang on his words waiting to hear how it goes as I see this being my ultimate solution instead of a new hip. That or a bionic leg with the strength of 18 kangaroos. I posted a doc you can download at https://www.ourthursday.com/wp-content/uploads/2009/07/aVN-Grafting-Duke.pdf which talks some pretty scary numbers that I am sure Mark was well aware of going into his situation. Well done mark and I hope the kangaroo strength returns.

  60. mark Avatar

    Luke,, I like the Kangaroo strenght refrence! Actually the cause of my AVN is trauma induced blood restriction incured when I threw an over-extended “high-kick” durring an MMA hard-sparing match. http://www.myspace.com/detroit_mma …. The only other significant injury ive ever sustained was a torn ACL and part tore PCL in my sr. high scchool yr durring gymnastics practice (which I only took to stay limber and build strength w/o the added lbs) durring wrestling season. HUMMM? I guess I should look to Breat Farve for guildence. :) BTW, the vascularized fib graft has been ruined. I go to the Docs thursday to get xrays. I was informed that theres a 50/50 chance that the AVN hasnt been erracated due to the screws placed through the blood rich fibula durring the second surgery. I also have 4 bolts in my knee securring the rod running along my mangled femure which I was told places added stress on my lower leg “that lacks what used to be a perfectly good fibula. I saw the xray of it b4 and talk about overcomming an injury mentally. Heck, im afraid my wimpy little tibia is gonna take on properties usually held only by tooth and popsicle sticks.

    What other procedures are you concidering?

    Mark

  61. Vivek Avatar
    Vivek

    I want the pills they have been giving Gurkan its seems to be working.

    Mark your x-ray must look like modern art. I don’t know how you by yourself manage all this and keep it together. You are like a war hero. Your story makes the other posts seem like hangovers and headaches.

    About the hangovers, it might not be the smartest thing to be doing now. The acidity of the drinks draw calcium from bones which may not want to be disturbed just yet.

    You already have a wise lighter, try lighting a different leaf.

    I’m definitely the youngest guy here at 22. I put my Masters program plan to get my hips up and fixed first by early I will have to get back to college. I cant wait to get out there again, but I don’t think I’m ready to go back to class rooms and assignments just yet!

    http://www.youtube.com/watch?v=2_BnhZMeIw0&feature=related

    This is a video I keep going back to, hope mark can post one real soon. All the best.

  62. wekab Avatar
    wekab

    @Vivek~ I watched the video and I hope to do that a year after my surgery l@l.
    If I making in the masters program without surgery yet, you can do it too!!!@Mark I read your story and I’m like WOW.
    I feel we are all too young to be experiencing this no matter how we got it through sports, illness or whatever but I know for me this is just another testimony to give God glory.
    Be encouraged. I go to the orthro on Monday and I’m actually excited :)

  63. Angela Avatar
    Angela

    Hi,
    My name is Angela and I’m from Holland.
    Last year I’v posted my experience with AVN. I suffer from AVN for 2 years now in the methatarsel bones of my forfeet/big toos, a very rare place to have AVN. Cause unknown. It was very painfull period in the beginning and till a few weeks ago everyday swelling. In May last I underwent bone grafting surgery in my left foot. Unfortunately the Dr. discovered so much week bone tissue in the joint, that he had to remove it. Result: Now I’m suffering with arthritis and can’t move my foorfoot anymore, not even with fysiotherapy. They now want to give me orthopedic shoes, hoping to get back movement in the joint. But, I think, to be honoust, it’s not going to work and I have to live with it. Now my right foot is beginning to hurt, so it will go the same way.
    The problem now is that I am suffering from severe convulsions in my foot and in my tibia. I already contacted the hospital, but did not get a response yet. I am affraid the necrosis is goin on, due to the convulsions. I did a request for a vessel check up, because I am very concerned abou it.
    At the moment I think there is nothing much they can do. I started to watch my diet. Low carb, minimize the suggars and watch the products where additional crab put into the food. Next week I have an appointment with an orthomolecular doctor the test my minerals, vitamines and other stuff in my bloud. The swelling in my foot is gone by the way. The pain’s still there, not al the time, but hey……..it belongs to me by now…….
    Does anyone of you recognize the convulsions?

    Have a painfree day,
    regards,
    Angela

  64. wekab Avatar
    wekab

    I’m exicted. That’s all I can say. I’ll keep you posted as to why :)

  65. Maria Avatar

    I have bilateral AVN of the femoral head. I had a THR on the right and a core decompression on the left. My AVN has been getting a lot worse on the left. Not knowing what to do but being certain I’m not up for another THR, I started Osteoking a little over a month ago. My hip is slightly better, and I know this is due to the Osteoking. I had also started with left knee pain, which was miserable, and that is gone. To say that I am thrilled with Osteoking is an understatement!

  66. Vivek Avatar
    Vivek

    @ Angela. For loss of sensation and convulsions you can try acupuncture It could help you control the situation.

    @ Maria. How old is your THR? Is it pain free or are you having problems with the THR? Also If you look at the Osteoking website they say that it will only help in delaying the surgery. I tried a lot of non surgical options and if I have learnt one thing it is to always keep in touch with your primary orthopedic doctor.

    Also if you have pain in the knee you should have it looked at. AVN can progress to your other joints over time.

    How long has it been since you got core decompression? Are you in bed rest or can you walk around?

    Godspeed to all.

  67. wekab Avatar
    wekab

    Well, my fellow AVNer’s lol~ I went to another orthropedic doctor on the 4th of this month. He ordered another set of X-rays which was very hard to do. This doctor unlike the previous one actually showed me my X-rays and explained what I was looking at. I had a list of my complaints associated with this ANV in both of my hips. Come to find out that the reason my left hip pain in so severe, is because my right hip just COLLAPSED and my left side is compensatiing for what the right hip can no longer do.
    I broke down in his office and he comforted me as well as my mother. He said if I had him back in April just based off the MRI, he wold have recommended surgery then. So the other doctor (who ordered me physical therapy), was trying to avoid doing a hip replacement on one hip at least, caused me to go through 16 sessions of hard-core p.t. and water areobics (which I love and the best thing that came out of this, and can’t wait to go back to)and did me MORE HARM than good.
    I’m in the process of getting everything autorized with my insurance, I have to see the other surgeon on the 27th and I’m bringing a list of questions. I’m very excited about the hip surgery these two doctors are going to perform on me. It’s called an anterior hip replacement (look it up). It’s done on a rotating table, they don’t cut the muscle or the tissue, so the recovery time is much quicker than the tradional approach and less likely to dislocate. I’m very pleased that I had to endure this for an additonal 6 months to get the best procedure for me. I would have never looked into this procedure b/c I didn’t know about it. Didn’t know there were more than one way to do a total hip replacement.
    Right hip first and he’s able to do the left in 6-8 weeks.
    My AVN didn’t get better, it got worse. I advise anyone that is trying to avoid hip surgery (like I was) to get a second opinion. Medicines only help for so long, the AVN is still there. Thanks Vivek for the support and Luke for this site. I’m more than 100% ready to get back to my life without hip pain and walking assistance.

  68. Ghysleine Avatar
    Ghysleine

    Sorry to hear about the collapse wekab :(

    I do agree with you about always getting a second opinion. I reside in the Sacramento Valley in Northern California.In my case I saw 3 orthopedic surgeons in total and even e-mailed the office of one that didn’t take my insurance to get his opinion. And to be honest, I got THREE different opinions: the FIRST one was all doom and gloom about the condition, saying I was too young for a replacement (27 yo), but that I would need one anyway just not now, and he could try a procedure, which he didn’t have any experience performing but a colleague of his did. So I went to a SECOND one, that said I may need a replacement, but was too young, so I should try keeping weight off it to avoid collapse and then I spent 3 months between crutches and wheelchair to be able to work, he didn’t offer any surgical options just deal with the pain, which was getting unbearable. FINALLY I saw a surgeon 2 hours from home in the Napa area and he explained all the surgical options, explained my MRI and my initial X-rays, and also advised me to get another MRI that focused on both hips not just the left. Well, I waited seating on that wheelchair and had another MRI which revealed bilateral AVN. I finally decided to have a bilateral hip core decompression this past February and after Aquatic Physical Therapy I’m walking with almost no limp. Most of my limp and soreness now is from the muscles that were moved/cut to get the drill bit below my femoral head, so my thighs are somewhat sore, but there is no pain on the hips while weight-bearing. I have strengthened the legs a lot, and now I’m cycling too. You can now see the AVN in x-rays(before you couldn’t) but they have not collapsed, which is encouraging. This procedure may buy me some time before I have kids since most hip procedures are not recommended for women in child-bearing age. My next step in case of collapse is resurfacing. But overall I’m satisfied with my surgeon.

    I would also recommend to anybody with AVN as much as possible to lose a few pounds to keep extra pressure off the hips. I recently read that for every pound you lose is like taking 3lbs off the hip. So if you lose 5lbs it may feel like 15 lbs to the hips. I know this condition can hurt, no matter how much we weigh, though.

    Good luck to all in your fight against AVN and to regain a normal, painless life. And thanks to Luke enabling this communications!

  69. Vivek Avatar
    Vivek

    @ wekab. Super awesome. I’m sure you will be fixed and hopping around really soon. All the best and keep us posted.

    @ Ghysleine. I am officially the youngest guy here (22 yo) so 27 is old enough. Anyway before I developed bilateral AVN I was under steroids (along with chemo) for more than a year. During the course I put on more than 20 kilos. By the time I was ready to loose the steroid weight I had developed AVN and weight loss was not my number one priority. So when I saw my surgeon I asked him if my being over weight would be a problem and he said he had operated on a 32 year old earlier and she have conceived and delivered after the surgery (Hip resurfacing.) So That should not be a problem for you. BUT you are certainly right about the 5 to 15 weight bearing ratio.

    Now the thing with hip resurfacing is to get the timing right. You have to get it done when the AVN is not very advanced and there is enough healthy bone to fit the new hip into. If you wait too long the AVN progresses deeper into the bone and hip resurfacing becomes impossible.

    Now the regulars at this joint know my story but for the newbies I already have a hip resurfacing done on my right hip (14th June 2110) and TOMORROW I will be going to the hospital for the next one. I Am getting the left hip operated as well. I only hope and pray really hard that its not too late and I can still get a hip resurfacing and wont have to settle for less.

    SO AGAIN I would like to say I have read and spoken to many many doctors extensively and am yet to come across one person who’s AVN got better without surgery. So don’t wait away your life in pain. See as many doctors as you can and make the right call.

    I’ll post again after the surgery.

    GODSPEED TO ALL.

  70. Mary Avatar
    Mary

    Hello! I am so glad I found this site/blog. My daughter is 22 (her name is Brittany), she has been diagnosed with bilateral AVN (knees and hips). Her condition is steriod induced; treatment for kidney disease. So Vivek, you’re not alone in your youth and AVN. I’m looking for answers/treatment options for my daugher. So far she has had a left distal femur biopsy, I guess similar to a core decompression but near the left knee vs. hip, that was 07/10, it hasn’t shown much improvement in sypmtoms yet. Her surgeons are suggesting a Core Decompression of her right hip, but we haven’t made any decisions yet. This site has definitely made me think hard about the fibular graft…I originally thought it was the “be all end all” solution, but maybe not…I’m going to try to get Brittany involved in this blog, I think it would be good for her to connect with peers.

  71. wekab Avatar
    wekab

    @ Mary
    I would recommend this site to your daughter. It has given me strenght and a lot of encouragement knowing that there’s others that are suffering like me BUT making it. She caught it early and that’s good. They caught mine in April but I knew something was wrong with me in Decemeber, now I have to get surgery on both hips. I’m 31 and we have our lives ahead of us. AVN hurts but there are so many options. Brittany join the site l@l
    @Ghysleine~ your experince is simliar to mine. The 1st othropedic doctor I saw told me to avoid surgery and ordered physical therapy. I believe that’s what made it worse. So I do walk with a walker not crutches and no wheelchair but I have both. I’m so thankful that I listened to my body and I was like something is still not right the end of August.
    Everything will be better. Be encouraged my fellow AVNers

  72. Mark Avatar
    Mark

    Hey all, it’s been awhile. @wekab, sorry to hear of the collapse, though it sounds as if the new surgury option is the way to go. My only point of discontent is that I personally didn’t know about this “minimally invasive surgury”. …

    On a positive note, i’ve been off all painkillers for the last 2 weeks (ran-out though:), took the leg braces off, put the tall toilet seat in the garbage lol, and the only discomfort is durring sleep (feels like i have a sattel-bag on my righ hip, odd)

    I go to the doc’s tuesday for a long overdue(skipped last 3 appts) x-ray and will find out more then.
    Keep on gettin on

  73. Vivek Avatar
    Vivek

    I’m back. My surgery was alright. Now I have two metal hips. The avn had progressed deep into my bone so I could not get a BHR hip resurfacing I had to settle for a BMHR. The doctors say its pretty much the same and I can do with my hips as I please after six weeks.

    I had my surgery on 18th morning. I got back home today I’m still under considerable pain and the movements are also very restricted as of now. I have started my physical therapy and am hoping for the best.

    I cannot express in words how I feel. After dealing with pain and disability for so long Its all finally over now, almost. These will be the longest six weeks of my life. I just want to go back out there with no pain no limp no crutches no walker. Big hug to all you guys out here.

    @ Mary~

    I used to have avn in my knees as well but it turned out that it was a extension of the pain and trauma radiating down from the necrosed hips. The necrosis in the hips are the primary cause of all the pain and other evil things.
    As far as i know core decompression is not a permanent solution it is just buy time.
    I would strongly suggest a Hip resurfacing. Its just brilliant. Do look it up on the internet and discuss with your doctor when you get a chance.

    All the best to Brittany.

    @ wekab how are you dealing with the pain? what implant are you getting?

    Godspeed to all.

  74. Soph Avatar
    Soph

    I woke up one night and wondered why when I stretched, I couldn’t stretch out my leg without acute pain. 4 months later I was diagnosed with Avascular necrosis (ostenecrosis) of my hip. I was 11 yrs old. I’m now 18, and the doctors have grimly told me that surgery is out of the question for a good few decades because of the high risk factor. I sleep disturbed at night, gasping awake because of the pain. Everything I do, from sitting to standing is chronic but yet I strive for the best. Above all the things I’ve tried, from yoga, physio to meditation, hypno and painkillers, three very simple things have helped (relatively.) Love, Music and writing. Sometimes it’s not about complicated methods. Sometimes it’s about ordinary things that become extraordinary. It’s devastating to see so many other people suffering the same illness but it’s also a relief to know that someone else knows what it’s like too.

  75. Mark Avatar
    Mark

    @ Vivek. Congrats on the surgury. 6 weeks is an awsome recovery time. Heck, just in time to go snow-boarding :)

  76. wekab Avatar
    wekab

    Hey my fellow AVNers
    @Vivek you are not the youngest any more. Soph has you beat by 4 years.
    @ Soph I can’t imagine having this pain for 6 years as yourself. You are a strong young lady because I’ve had this for almost a year and I’m done with dealing with this pain.
    Back to Vivek, Sorry it got that bad for you but I know that you are happy b/c you can walk like you us to in about two months. I can’t wait to get both of my hips done. They are going to do a procedure call the anterior approach. It’s still a total hip replacement but it’s done on a rotating table, so they won’t have to cut through tissue or muscles. Google it.
    I have to get both hips done, so I’ll be just like you l@l. The pain, the pain well, no medication works. My bones pop all over my body :( I’m walking with a walker and I have the Jesus as my comforter, but I sometimes take motrin, aleve and recently I took a vicodin(which made me sleepy). It helped a little. Key word little. After both of my surgeries, I’m still going to frequent this site to be a support to other. I’ll keep everyone posted.
    @ Mark, how are you doing? Be encouraged everyone.

  77. Soph Avatar
    Soph

    @ Wekab. Thankyou for the compliment. What can we do but strive for the best? People say you get used to pain but I don’t think we ever get used to it. We just climb the hurdle and adapt. I can’t imagine having this pain in both my hips (good god) so I think YOU’RE strong for having waited a year, let alone 6. What can I say? We shouldn’t be defined by our illnesses but.. I read that you have sickle cell? Well, me too. I have sickle cell anemia, which is like a biproduct of two traits (or something) thank f$#%* I don’t have the full condition but it still means bloood exchanges every 6 weeks (joy). May I ask… How old you are?

  78. Vivek Avatar
    Vivek

    @Soph. Here, have my youngest AVN person sash and crown. Also you seem to be taking this really well all strong willed and all WOW. I got cancer when I was 18 and have often wondered how young is too young and now its decided its 18years. 18 is just too young to get any sort of longterm life altering illness. It takes away the do stupid things in life years. You should really mail my doctor and see what he has to say. He told me he has operated on a 14 year old boy if I remember right. May be he can finally put you out of your pain. Are you personally against getting surgery to get your hip fixed?

    @ Mark. In my mind you are this guy Otto from Rocket power a cartoon show I used to watch on nickelodeon as a kid. I am very far away from snow man. The equator probably passes through my house. I have been to the Himalayan foothills just once and had to put on all the clothes I had with me. All the best for tomorrow let us know how it goes.

    @ Wekab. Anterior approach only means that the docs will open you up from the front and not the back. What implant are they using? long stem, short stem, metal cement-less, ceramic what? In most probability all of us here will need a revision surgery so the idea is to get the smallest possible implant now so that the next time around there is enough untampered with bone left to do the revision surgery.

    Also I got really good pain meds this time around ;-).

    Godspeed fellow Avn-ers.

  79. Soph Avatar
    Soph

    @ Vivek. Excuse my French but fuuu$&@, you were 18 when you were diagnosed with cancer?that’s just devastating AND you suffer avascular necrosis too and yet you write with such humble kindness and humour? Wow. – Me? I’m not personally against anything. All I know is that the heartless doctors over here have told me in their booming voices of authority that I could end up in a wheelchair and that they won’t operate because the risk factor is too high with my codition + the lifespan of the prosthetic hip is relatively short and there we have it. It’s 2am and I’m still not asleep (surprise surprise :P). It’s nice of you to recognises my strength but aren’t we all strong? I mean, it’s not like we have a choice..

  80. Soph Avatar
    Soph

    PS. I was on oxycodone (morphine) for a very brief time until I realised that I was slowly but surely becoming a child addict and made myself stop. Besides, I wouldn’t have a hope in hell getting high marks in school with a fuzzy, zombie like head. Tis not like drugs made any dent on the pain. – Sometimes I wonder, why is pain painful? I mean, I know it’s there for a reason obviously, but wouldn’t it be lovely if there was some kinda drug that stopped those pain receptors and signals going to our brain and making us realise…/sigh. Bionic woman anyone? :D

  81. phil322 Avatar
    phil322

    wow i never thought there would be this manyy people with avn my last surg was july 9 and still have my knees to go yet when i first saw this blog only a few people were on here with luke im 45 had both hips replaced does anyone have severe pain when it rains??????????????

  82. phil322 Avatar
    phil322

    oh ya im the old guy on the blog lol good luck to all of you

  83. Vivek Avatar
    Vivek

    @ Soph. Thank you for the humble kindness and humor bit you are super kind.
    I have read up extensively on AVN and spoken to countless doctors before I made the final call. You are the the perfect candidate for a BHR or BMHR depending how worn out your femur is.(I have both). As far as implant wearing out goes all of us here will need a second surgery. So you just need to get the smallest implant possible. So that there is enough good bone for the revision surgery. Look it up on the internet. Find a surgeon who practices hip resurfacing. If all goes well you will be AVN free really soon.

    http://www.birminghamhipresurfacing.com/2/35/ check this out.

    PS; I used Fentanyl patches for pain during chemotherapy when things got really bad. It’s 100 times more potent that normal morphine. ;-) But I’m sure you cant just go out and buy some.

  84. Vivek Avatar
    Vivek

    The real screw up is that most surgeons have no experience with hip resurfacing and strongly advice their patients against it. They want their patients to get the surgery and implant they are most comfortable with, even if its not what is best for the patient. Three doctors told me resurfacing was a bad idea but really its not. All you need to do is look it up and assess your options.

    No matter how badly your hip resurfacing goes or once it has been with you for however long you can always convert it to a Total Hip Replacement. The same cannot be said about the THR. Also we know for sure that hip resurfacings do far better than the conventional options and offer better range of motion and no restrictions in activity what so ever.

    GOOGLE people no one knows more than Google. No, not even doctors.

  85. Sydney Grieve Avatar

    Awesome. Thanks for posting this. It is always great to see someone educate the interet.

  86. Mark Avatar
    Mark

    Went to the both doc’s today. Not the news i was hopeing for, but not all bad. 1st they took the xrays…I have new bone growing in the hip/femoral head. Then the doc does range of motion tests, only 30% rotation in the (close your eyes, crass explination..sorry) spread eagle test? for the right leg, but that progress is normal. Then the hip abductor test (lay on side, female work-out video sissor lift:) and nothing. No movement at all. and then he lifted my leg for me and let go for a sec, and my knee felt like it was gonna snap. Remember I had the second surgery to repair my broken fibula. Well it was supposed to transfer the weight load to the knee via metal rod/screw apparattus. then I told him of my exteem fatigue and I seen the light bulb over his head. As the gears turned in his non-mechanical brain… Eureka! he didnt exclaim, single finger not pointed in the air. I guess the infection i had a month ago or so might be osteomyelitis and it’s weaking my bones. As if avn didnt do that enough. explicative @3%^%!!!!! ^ more. He said i need to call the hospital imediatly if i get a fever? like, really dude.
    Anyway. the other news is still NO-weightbearnig for another 2 months then i can gradually start. My worry is that in a month i need to worry about ice and campus has lots of hills + crutches= ***** ???

  87. Mark Avatar
    Mark

    @ Luke… inspired by your 10 thing I hate about walking and witfull B.A. Barakass drop, heres to a Lampoon-ish thread… if only for a momentaty pitence of our pain and pity.

    @Wekab… Im in a fantastic state of mind. Physicaly read previous post^^. And you? p.s tape Tightly!! 2 folded wash cloths to the grips of the walker…helps the hands

    @ Vivek… This Otto you speak of, does he still have a show? And you sir, in my minds eye are like Kumar, from movies like Going to White Castle and Escaping from Guantanimo Bay. J/k

    @ Soph… good thing you got off the oxys in time befor the bulling band kicked in cause with a fuzzy zombie head the regular zombies would make of you cause you looked like like a “90’s troll doll” very un-goulish. And the normal kids wouldnt be scared off and would taunt you by piont and laughing”un-dead ferbie” j/k btw, atleast feeing pain is better then feeling nothing. What are you in school for?

    And @ everyone… I would like to know. 1) you favorite reason for having AVN. 2) How AVN positivly effected you today and 3) a funny AVN joke

    me: 1) fav reason for AVN is I going to strut with a cool cane in a few months with out being cheesy 2) AVN helped my work-out my abs when using using my crutches to get to class. 3) Two AVN’ers walked into a bar.. wait, no they didn’t

    Smile, while this is a disease only affects 10-20 thousand people a year, making it quite rare to (ever) find people in our everyday lives who understand our pain (literally). While we use the phrase “sorry to hear” . We here are NOT sorry, i personally glad to have met (figurativly) very stong willed, battle-life tested individuals i’m glad are on my team.
    Thanks

  88. jess Avatar
    jess

    Hi, I am a 30 year old mum of 6. After over 2 years of pain I have been diagnosed with AVN of the right hip with secondary osteoarthritis. Basicaly the surgeon has told me it is beyond anything other than a hip replacement. I have been having a few “twinges” in my left hip so will be having an mri in the next couple of weeks. Hoping it’s not AVN aswell but have been told that if it is I will be a candidate for core decompression. Apparently in my case, although they are listing me as having idiopathic AVN they think it may have been caused by the steroids I had during my pregnancies, also there have been cases where pregnancy has caused the condition. So, with my right hip I am destined to several more years of pain until I am considered old enough for replacement surgery!

  89. Luke Avatar

    1) AVN got me on the bike as well as gives me an excuse not to dance

    2) Taught me to live a little more humbly as well as understand pain and how to ignore/conquer it

    3) A man was wheeling himself frantically down the hall of the hospital in his wheelchair, just before his operation. A nurse stopped him and asked,
    “What’s the matter?”

    He said,

    “I heard the nurse say, ‘It’s a very simple operation, don’t worry, I’m sure it will be all right.”

    “She was just trying to comfort you, what’s so frightening about that?”

    “She wasn’t talking to me. She was talking to the doctor!”

  90. Soph Avatar
    Soph

    @ Vivek. Thanks for taking the time out to send us all the website.
    My femoral head is too far gone, I think. Totally collapsed, and necrotic and what not, so I’m really not sure, I’d also need more information than just one website, but at this point, even the mere mention of surgery makes me revolt. But we’ll see in a few years.

    @ Mark. I like your wit. Very erm…witty? :P hehe.
    Though I must disagree with your last statement about how
    feeling pain is better than feeling nothing. For some, who may be empty inside,
    perhaps this is true. For those who have suffered pain all their life though, nothing would be a welcome change, though on the otherhand, people self mutilate and cut to feel any sensation at all, so I’m not sure.

    Also, in answer to your Q, i’m just finishing off some subjects and hoping to pursue an acting career!

    Take care and chin up, all!

    Soph :)

  91. Vivek Avatar
    Vivek

    @ Soph. Necrosis in the hip is not really a continuing process in most cases. It eventually stops leaving your femur all tattered, flat, unshapely and unable to move around as usual and unable to bear weight without pain. Then if you still decide to do nothing about it its collapses. Do look at some of my older posts, they have some insightful links. I would suggest you email your x-ray to my surgeon Dr Vijay Bose he will get back to you rather quickly. He’s amongst the best in the field. This is his website.
    http://www.hipresurfacingindia.com/index.php
    Now I’m sure you dont want to come to India to get your hip fixed but I’m sure Dr Bose can guide you in the right direction. All the best.

  92. wekab Avatar
    wekab

    Hello my fellow AVNers~
    I haven’t been on here in a while and yay our leader (Luke) posted something!!!
    @ Vivek, I know I have the anterior appoach on my favorites and I’m very excited about getting it done. They took x-rays today to determine the size,so I won’t know the size, but I am getting a zimmer implant :)
    My surgery is next Tuesday the 9th on the right hip- the one that collapsed. I had felt pain in Dec of 09, and I thought it was because I got on the chiroprators table wrong. Nope. I knew something was wrong when a percocet I had left over didn’t help with the pain.
    I’m just one step closer to living the life that I once had. :D

    @Soph~ nice to unoffically meet a fellow “sickler” that also has AVN (oh the joy). Wow @ blood exchanges every 6 weeks. I get blood transfusions every 3 weeks so I understand what you go through to a degree. I know about the blood exchanges and it’s a much longer process. I can’t imagine going through this AVN for 7 years as yourself. The anesthesiologist to me he has seen hip replacements on children, so ASK YOUR DOCTORS, you have a voice in your health care!!!

    @Mark~ wassup!!! It’s crazy b/c my dad bought me a walker today that doesn’t squeek and I was so excited as if he bought me a brand new car. Now that is crazy. Once I get my left hip done, ima ditch this bad boy, or maybe I should save it to reflect on what I use to call my extra “legs”. I pray to God to let the rain stop when I have to walk on campus, so I can’t even imagine snow.

    Well, I will keep you all posted on how my surgery went!!! Be encouraged

  93. Vivek Avatar
    Vivek

    @ Wekab. All the very best. I’m sure your docs have watched House and Greys Anatomy and have well acquainted themselves with the procedure and even have DVDs just in case. j/k.
    Wish you a speedy surgery and hospital stay and a speedier recovery. Waiting for your post op post.

    Ps- As far as implants are concerned do you have a choice? I had asked my doctor and he said if I wanted an implant from a said company he could get it or he would just use the one he likes best, so instinctively I set googling and before my first hip I had read something about zimmer implants being defective and called back and stryker hips we known to be squeaky. As you said “You have a voice in your health care” look into it. Ask your doctor.

    @ soph~ Any new developments?

    @ mark~ the show is called Rocket Power. YouTube.

    HAPPY DIWALI to all of you.

  94. wekab Avatar
    wekab

    @vivek~ trust me I know about the recalls and informed my doctor about them. He insured me that was a totally different line in the zimmer that was recalled. It was either the cup or the stem but not both parts;which he doesn’t even use. The Depuy products have been recalled also which is more in depth. I have looked into all of that. I’m not going into this blind, but thanks for looking out for me. Less than a week away and I have a little congestion that I must get rid of, so I’m dowsing myself in fluids and healthy foods since no meds other than Tylenol can go into this aching body. I will be ok. Running l@l like crazy trying to get everything in order. I’m so excited :)
    I will for sure keep you posted.
    Be encouraged :D

  95. Sabrina Avatar
    Sabrina

    Hello everyone!
    I can’t believe I am just stumbling onto this blog now. Wished I would of found you much sooner.
    I am 31 years old. I was diagnosed with AVN of the right femoral head in 2001 when I was in the Army. They misdiagnosed me for quite some time, sending me to physical therapy and saying it was a femoral neck stress fracture. Finally, they gave me a bone scan and then MRI to show the deteriorating “ball”. It didn’t show up on xrays. I was in Ficat stage 3.
    I was given two choices. Hip replacement, OR…a free vascularized fibula bone graft. It had never been performed there. I was at a medical training hospital in Texas. They were dying to practice this new procedure….and I thought, why not? They were just going to chop the whole thing up with a new hip, why not let them try this first. I was just way too young for a THR, and still am.

    I think the surgery was successful. Current xrays show the bone and strut doing great!

    I have lots of pain from other things now….and I don’t think its the AVN giving me problems.
    If you are young, I strongly suggest looking into the fVFBG.

    It saved my hip and I am so glad I went with that choice. It was a daring choice, but the right choice.

    I now am married with 3 small children living in Maine. I try to stay active by doing non impact exercise.

    I would be happy to answer any questions any of you may have if this is something you are contemplating.

    I hope you are all doing well.

    Warmly,
    Sabrina

  96. Moe Avatar
    Moe

    Hi everyone, I’m a 33 year old male – diagnosed with AVN in Left Hip yesterday. I’m researching after my Ortho’s advice. Had pain in left hip since July 2010 – went to the chiropractor and got relief, but the pain always came back. Finally went to a MD – he performed an Xray which was negative – so he sent me for Physical Therapy for a month. Pain was less intense but wouldn’t go away, so he sent me for an MRI which shows partial bone death on one small “tip” area of the joint. He sent me to an Ortho who says I should immediately get Core Decompression Surgery since it’s in the early stages. Wants me to be on crutches until then. My pain isn’t that bad – I can walk without feeling it – but, if I turn/twist my leg a certain way I can feel it intensely, deep in my joint. Should I get the Core Decompression Surgery now? Is it worth it, or will it just cause more problems? Or, should I wait this thing out a little longer? Great post/comments and glad I found this – Thanks to Luke for keeping this up! :)

  97. Mark Avatar
    Mark

    Hi Sabrina, I also underwent the F.V.F.G… top of pg 2 me and luke posted on it.. anyway, I had quit smoking and was prepared (actually all ‘Psyched ala Wekab:) to get finally begin on the road to recovery. I went in Aug 18th,’10 (arterogram) and had surgery the morn of the 19th. Ehh..have to say it wasnt all that bad, heck the worst thing was the cathader. LOL I remember the night before getting so worried about the urethria streatching hose I call in the “head” nurse and had him tell the doc i was leaving if he insisted on placing [craming} one in me. Maybe it was the culmination of everything, Jones-in hard for a cig,, I demanded!!!! a seditive/barbituate. The “head” man-nurse, sassed me all Richard Simons like…albiet after my 2-3hrs of badgering on my part, I limped my***self out into the parking lot and got my my nicotine fix… Growl,Growl,mumble (puff, puff) ….ehhh, i forgot where i was heading with this but, i got a craving now.. so ill wrap up these non-senseical ramblings after I crutch up to the Party Store

  98. Gys Avatar
    Gys

    Hi Moe!

    Your story sounds so similar to mine so I thought I could give you my two cents.
    I was also diagnosed with Left Hip AVN after an MRI and some months of pain, thinking it was my running. I also tried the Chiropractor. I had a second MRI of the pelvis and it was found I had AVN on both sides.

    I would recommend some things based on my experience(I’ve had bi-lateral hip core decompression on February 2010):
    -Don’t stick with just one doctor’s opinion. Seek at least 2 more if you can.
    -Since it is early, Hip Core Decompression is a good option.(It all depends in which area of the femoral head the necrosis is located, as one surgeon told me)
    – Since your x-rays are not showing necrosis that is good. Mine didn’t initially, now they do, but it is because I waited so long to have my surgery. I was diagnosed in October 2009 and waited until February 2010, plus I’m overweight which adds pressure to the hip area.
    -I did use crutches and my pain wasn’t that bad for a while but eventually it got worse. I would continue doing PT before a surgery if you can, so your post-op recovery is better.
    -I would recommend if you haven’t already, get a full pelvis MRI to make sure there’s no necrosis on the other side. Some doctors will tell you that is rare to have it on both sides…well I did! So is better to be safe than sorry.
    -Make sure whomever you choose as an Orthopedic Surgeon can look at you in the eye and assure you that they’ve done this surgery before.
    -There’s not a lot of websites online that explain and talk about hip core decompression and post-op recovery. I’ve found some and if you need any additional feedback from a patient perspective let me know.
    -The Surgery was and is worthwhile for me. After water therapy I’m walking normally and working on losing weight, though I can’t run for at least a year, I’ve logged many miles on my road bicycle already. 26.2 miles is my longest single ride. Not much, but a lot for an asthmatic who has some extra pounds and had hip surgery less than a year ago.
    -The necrosis is still visible on x-rays in my case, but there is no bone collapse and I’m pain free.
    -Not sure which state you’re in or if you’re even in the US. But if you’re in California, close to the Napa Valley I would recommend my surgeon: Adam Freedhand, MD (www.adamfreedhand.com or http://www.napavalleyjointcare.org)I personally drove 2 hours to get there from the Sacramento area after 2 other surgical opinions that were not really encouraging. I do not regret that long drive. He explains your imaging very clearly, he answers all your questions and concerns, and also took his time explaining how the procedure will be done. This guy has an excellent ‘bedside manner’ and I have a lot of respect for him and how he didn’t pressure me to have surgery and just waited for me to make my own decision after researching, using crutches and a wheelchair. BTW after the surgery I just used crutches for 6 weeks in a 4-point gait, so my weight bearing was restricted, but my hips were painless, there was some sorenes on my thighs from the surgery, but that is to be expected. I had a small incision (smaller than my pinky)on each thigh.

    Ask if you have any questions! There’s a lot of us in this blog that support each other. Thanks to Luke!

    Wish you the best!

    Gys

  99. Soph Avatar
    Soph

    Hi all! @ Wekab, thanks for the support. Blood exchAnges are gruelling (as are blood transfusions), my veins are pretty much botched due to all the scar tissue so… Also can’t remember if it was you, Vivek or Mark who asked of there’s any “new development” but this stAge, no. If I go back to my current doctors, I’ll be given the same response. I’m considerig going interstate in the future to get a second opinion but at this stage, it’s all daunting and scary territory which I don’t think I’m ready for yet. Warm wishes to you all. :)

  100. Luke Avatar

    Gys, that is some phenomenal advice. Thank you and thank you to all for making this page actually really informative and helpful. I think it would help everyone if we all shared the doctor’s we used like Gys does. Reading Moe’s comment makes me feel that some doctor’s are outright dangerous.

    I went to the Orange County Orthopedic Clinic (I think thats what you call it) and saw a Dr. Baviji. This clinic and him came highly recommended by many a doctor in the area. He wont claim to be an expert on the subject but his surgical skills are top notch. When I talked to him specifically about AVN, it seemed he was regurgitating the websites I had already read. Good dude in general but not the cure for AVN.

  101. Moe Avatar
    Moe

    Gys,
    Thanks so much for all the info! I’ll definitely mention the pelvis MRI. My Ortho didn’t say anything about the location on bone – so I’ll check on that, too. And since he didn’t mention it, I’m taking your advice and looking up another Ortho for a 2nd opinion. I’m on the east coast, so can’t make it to your doc – but, my #1 priority tomorrow is to research a good Ortho out here.

    It’s great to hear about your good recovery.. This all has me terrified. Especially since I’m only in my 30s and looking at possible hip replacement sooner than I ever imagined. But after researching the web, I’ve found this is all a lot more common than one would think. Still, scary stuff.

    Thanks again for the info, and Best of luck to you!
    I’ll keep you posted.

    Take Care
    -Moe

  102. Ghysleine Avatar
    Ghysleine

    Thanks again Luke for keeping this open so we can communicate with each other!

    Moe: I know this is scary stuff! When I first heard the word necrosis and I know it meant ‘dead’ I was really sad, but after reading other’s people experiences and encouraging words plus the options available I knew this was something I could face.

    Since you’re in the East Coast I will recommend 2 websites that I found really helpful. http://surface-hippy.com/ and http://www.surfacehippy.info/ are basically the same and there is also: http://www.hipresurfacingsite.com/

    These sites have mostly information on Birmingham Hip Resurfacing (BHR) vs THR but you will find a lot of questions answered by real doctors. There is also a list of doctors by state, and usually these surgeons that are familiar with hip resurfacing are comfortable and/or experienced with Core Decompression.

    I’m 29 and was diagnosed at 28. I’ve had no kids so that limits some of my surgical options until I do have kids. Since you’re a man even though you’re young you will find that doctors are more comfortable doing surgery on a young man than on a young woman of childbearing age, specially when it comes to resurfacing. Hip Core decompression doesn’t carry as many risks as other surgeries related to AVN, except the regular surgical ones(infection, blood clots, etc) I didn’t have any complications and was even able to be in a pool for physical therapy within 4 weeks when things were the incision was in good condition for soaking.

    Good Luck!

  103. Vivek Avatar
    Vivek

    WOW For the new posts. Hardcore information.
    For the benefit of the new guys, I’m 22 and had bilateral AVN. Tried a ton of non surgical cures. Nothing worked. Started with crutches then progressed to the walker. This “avoid surgery so early in life” dance went on for almost two years.

    At an initial stage I was advised to go in for core decompression immediately. The doctors made it sound like if I dint get the surgery in the next 24 hours the penguins would take over the world.
    Having prior experience with hospitals and doctors and surgery (from my cancer days) I took my time to read up and see a couple of more doctors. I was told and I read that the core decompression surgery is not a 100% cure to AVN. The necrosis could resurface as soon as the hole they drill fills up with new bone. Or anytime in the near future when you resume normal daily routine life. You are advised to stay off impact activities. I spoke to one such girl also a patient of my surgeon.

    Now I had lost a whole lot of time dealing with cancer and then the side effects of the treatment and so on. I wanted a Fix for my AVN which was Most durable. Which had the best results in practice. I certainly did not want to spend anymore time with doctors and at hospitals at the receiving end of sympathy.

    I have a BHR a hip resurfacing on my right hip (june this year) and a BMHR in my left hip (two weeks back).

    MY right hip is able to take the weight of my whole body and support it. I have no restrictions on activity. Guys with hip resurfacings are running marathons.
    Waiting for the left hip to heal and set in there. another 4-5 weeks till that happens.

    If all goes well I will be rid of this horror of AVN for life.
    Now thats what the doctors say that the newer implants last for ever.Even if they dont the hip resurfacing implants are the smallest implants used and take off very little bone and can be converted into a THR very easily so there are a lot of options still available.

    We cannot say that any one surgical option is better than the other, each have their own merits and flaws. We need to stop thinking that we are too young for surgery be it core decompression or replacement or anything else.

    How is it that one can be too young for surgery but not so young to be be walking around with crutches and canes and popping pills for pain?

    PS: I am no doctor but one thing I know for sure AVN cannot and does not get better with physical therapy. So if you’re doctor suggests PT get a new doctor.

    @~LUKE time for a Facebook group?

  104. Gys Avatar
    Gys

    You’re right on Vivek! We’re not too young for surgery :-D

    And I agree with Vivek Core Decompression may not be very effective. In my case I’m just ‘crossing fingers’ that it will buy me a few years before I can have a resurfacing,but after I have kids. I did find stories of people with bad experiences after core decompression, because they had bone collapse afterward. The main issue is this procedure can’t be done with advanced necrosis. I read only ONE testimonial of somebody that had it done and postponed another hip surgery for 10 years. I’m hoping for maybe half of that. I want to run a half marathon or even a full one and I won’t be able to unless I’m resurfaced.

    I also agree that PT doesn’t make AVN better. I would recommend before a Surgery because that makes recovery better when it relates to muscle condition. I sat on a wheelchair and used crutches for about 3 months and I can tell you the leg I used the most before the surgery did better after surgery. While the other one took longer and a lot of the major muscles in the hip/groin area(psoas, glutes, etc) were tight as hell from all the lack of activity. But if you’re in a lot of pain, just know PT can hurt.

    Vivek you inspire those of us that think we’re too young for this. You’ve already dealt with cancer before this and are still keeping your chin up. I didn’t deal with cancer, just steroids and I could honestly blame the steroids for my hip issues, but if it wasn’t for them I would be blind. So I count my blessings and just keep on.

    I vote for the facebook group!

    Thanks again to Luke and to all of you that share your stories/experiences here :-D

  105. Moe Avatar
    Moe

    Wow guys, thanks again for the responses. Gys, I have 2 other appointments scheduled with 2 other Docs – one is with the leading Ortho’s in GA; Emory Orthopedics. Thanks again for that suggestion – I already feel better knowing I get to talk this out w/ 2 other specialists.

    Vivek, you are so right. I never looked at it that way – if I’m hopping around on crutches, then I’m ready for surgery no matter what my age. You’ve been through so much dealing with cancer, and here I am worried about a little hip pain and surgery.

    Thanks for sharing guys – I, too, vote for a facebook group!
    This is all such helpful and supportive information.

    Take Care
    -Moe

  106. wekab Avatar
    wekab

    Hello my fellow ANNers
    @ Luke yes I agree with Vivek, their needs to be a facebook group. There’s too many of us now since I found this site. It’s like woe. More and more people are being effected by this painful disease.
    My advice is to seek help immediately. I did but it wasn’t soon enough. I have surgery on my right hip on Tuesday.
    It was this advice of Vivek that help me feel at ease with the discussion also God as the 100% factor. This disease has effected my overall well being. I told my hair dresser today, I just don’t fell like myself since I have this. Tuesday can’t come soon enough. That’s just one step closer to getting my left hip done. Yeah it’s that bad.
    @Soph my veins are shot due to a hospitalization last year. My onglogist recommended a portacath (that is my new best friend ;)
    Physical therapy made mt AVN WORSE so be careful!!!
    Be encouraged :)

  107. Moe Avatar
    Moe

    Good Luck on Tuesday, Wekab! What kind of surgery is it? The resurfacing? Keep us posted on how it goes!
    Best Wishes!
    -Moe

  108. Vivek Avatar
    Vivek

    @ wekab. Don’t forget to chill out. It’s really important before surgery. Comes highly recommended. Dont mean to freak you out but I used to have a port for my chemo and I have only bad memories of that. I’m sure it will be all cool for you but take extra care and caution with the flushing with sterile water and likes. They gave me awesome white ballerina stalkings after the surgery, I wish they give you pretty pink ones .
    All the very super best.

    @ GYS. hi. It’s true about the whole used leg v/s unused leg recovery deal. I am there right now. I am finding it really difficult to get my muscles to do the pulling and supporting again. So much so that my muscles that hold up the pelvis in place are too weak and my pelvis is slouching on the left which inturn makes my left leg seem longer. I am super paranoid. If you can tell me as to what physio exercises worked best it would be great.

    @ MOE. Your avn has probably just begun to set in with there being no pain during weight bearing. Do you know the cause yet? Its great that you already know about resurfacing. Do discuss it with your docs. Resurfacing is new to most doctors and they simply reject the idea. I’m no doc but it seems like you would be an ideal candidate too. Find a doctor who practices resurfacing.

  109. Moe Avatar
    Moe

    Vivek,
    Yes, my AVN is in the early stages – I’m lucky that I felt pain while walking up stairs, playing/running with my son. It wasn’t terrible pain – but, a “different” pain from a muscle pull or strain – so, I decided to have it checked out. I’ve had many prednisone shots/pills/inhalers over the years for serious allergies and bronchial illnesses. I also hurt my hip last year while bowling – not sure if that caused any trauma that led to this or not. I do drink (or, DID drink), but not on a level that would be termed “alcoholic” – but, even so, that could have contributed. I also sit in front of a computer all day for my job, and I’m slightly overweight. I guess I have a lot of factors that have contributed to this. But, I’m done trying to figure out what caused it and I just want to get it resolved.

    I plan to try the Core Decompression since it is in the early stages. But, I’m definitely going to try the Resurfacing route if that doesn’t work. Thanks for the info!

  110. Coss Avatar
    Coss

    Hi everyone, I’ve been reading all of the comments everyone is sharing and have a couple of questions. I have not yet been diagnosed with AVN. However, the more I’m reading, I’m wondering if this is what’s causing all of my right hip/groin pain. Could anyone tell me a little more about the “specific” type of pain they are feeling/felt with AVN? I’m 37 years old, in good health, never had any health problems at all but I am overweight.

    About a year and a half ago I experienced a fall. My legs got taken out from underneath me and I landed like a 2×4 on the ground..completely took my breath away and wasn’t able to brace my fall with my hands much at all. I ended up with a concussion and a right shoulder injury and just painful muscles, etc afterwards. Not long after that I started experiencing a slight limp on my right side as it felt like I had one leg a little longer than the other with very minimal discomfort. Nothing to really worry about I thought. Then beginning of this year it got worse and worse. I had lower back pain on the right side, hip pain and pain radiating down my leg. I went to a chiropractor 3 times a day for 4 months with only slight improvement after the visit, then back to the same pain a few hours later. He was treating me for a sacroiliac problem he thought. I finally couldn’t take it any more and saw my physician. He put me on pain meds for a month. Nothing. I then did physical therapy with the pain meds…she thought it was a herniated disc pinching a nerve. Did that for 2 months, minimal improvement while there. Once left, right back to same pain. Couldn’t sit, couldn’t stand, could only lay down. I was off work for 8 weeks and just returned yesterday. They also did an MRI on my spine during that time I was out and noted a “slightly” herniated disc but nothing major. Gave me 2 epidural injections within the last 3 weeks.
    I keep trying to tell them that my “spine” no longer hurts…it’s not my back any longer so I believe I may have experienced some of the back pain from the disc but don’t believe it was a pinched nerve radiating to my hip/groin anymore. My hip/groin pain is basically located in the middle of the right side of my body if that makes any sense? Like if you drew a horizontal line from my spine to my outer hip, then drew a vertical line to make a “cross” my pain is on the right side of that line. The only time I am pain free is if I’m laying down, majority of the time on my stomach. The pain also makes it feel like my bladder is “full” etc when sitting. When it’s really bad it feels like “lightning” or a burning sensation is wrapping around my hip to my groin.
    I go back to the pain management specialist tomorrow as he expressed concern about my pain after I called him today and I mentioned that I had just found some info re: AVN. He said he would take an x-ray, try to give me a shot in my hip to get me through and will “maybe” order an MRI. Any thoughts/suggestions? I just want some semblance of my life back!

  111. Moe Avatar
    Moe

    Wow Coss. That’s quite a story and I hope you find a solution soon! My AVN is in the early stages (as seen on my MRI) so it doesn’t show up (no bone damage) on an Xray. My pain feels centered in my hip joint when I pivot my entire leg/hip inward. I don’t, yet, feel it with just standing, putting weight on it- I can feel it slightly when I walk if I kind of “jerk” my step. If I walk for a long distance, then I have some minimal aching when I rest afterwards – which sometimes radiates down into my thigh. I can also feel it when climbing stairs. Hopefully, some of the other folks here can provide some insight into how the pain feels in later stages. I’m sure it also would depend on where the AVN is located on the joint. If I were you, I would demand an MRI on my hip at this point.

    Hope this helps! Good luck and keep us posted.
    Take Care
    -Moe

  112. Vivek Avatar
    Vivek

    @ Moe. Hey, now that you are in the early stages and if you want to avoid surgery at any cost Ayurveda is worth a try. Its traditional medicine from India. I had developed AVN in mt left knee due to the excess strain after my Avn got considerably bad and I tried Ayurveda for that and it was a great relief. But my necrosis was at a very very early stage. I am from India so its was an option for me but I don’t know how feasible it would be for you. If you are interested let me know I’ll give you details.

    @ COSS. This forum is really great and high on info, but you my friend need one of those real doctors first. Good luck.

    @Wekab. Hope it was super. Waiting to hear from you soon.

  113. Moe Avatar
    Moe

    Got my 2nd opinion today and it’s pretty much the same: Left Hip, AVN Stage 2-3, likely Stage 3 – Need to try Core Decompression surgery.

    He said the Core Decompression will at least buy me some time before I need to get a THR. The THR will last between 15 to 25 years – 30 if I’m lucky. So, I hope to get at least 3 years out of the Core Decompression. I’ll be 34 in Feb, so that will put me at 37 for a THR, then 52 (hopeful worst case) for a 2nd THR.

    He said almost everyone they’ve seen for AVN are in their 20’s-30’s, so not to feel like I’m some strange young age case they’ve never seen before. I liked this place better than the 1st – as they have “a guy” who only does hips.. whereas the 1st place’s surgeon did it all. I meet with him next week to discuss/schedule the Core Decompression surgery.

    @ Vivek – I read up on the Ayurveda – but, since I’m a little further than ‘very early stages’, I think I should jump on the Core Decompression wagon as quick as possible. Thanks for the suggestion.

    Take Care
    -Moe

  114. Tim Avatar
    Tim

    Hello,

    I tried to skim through all the comments quickly, and I don’t think I saw anything about Autologous Stem Cell Transplant. Pioneered in Belgium I believe, but I had my right hip done over two years ago by Dr. Thomas Einhorn of the Boston Medical Center.

    FYI I was diagnosed over two years ago, bilateral AVN of the Femoral Heads. Idiopathic. Right side was maybe just barely starting to collapse. Left side mainly asymptomatic.

    The result of the surgery is the lesions on BOTH sides have gotten smaller. It can’t really do anything to reverse any collapse, but there’s a TON of hope for early stage AVN sufferers.

    Don’t get me wrong, by no means are my hips completely cured, but I’m 34 now and can realistically see a chance of delaying a hip replacement indefinitely.

    Also, I work for the local news here in Connecticut. Here’s a link to the story I did about it at the time of the surgery in 2008. You can see the surgery and everything – it’s very minimally invasive compared to other options.

    http://www.ctnow.com/ctn-avascular-necrosis-0529,0,4839230.story

    Any questions, email me at [email protected], but sometimes that doesn’t work, so also try [email protected]

    Best of luck, sufferers! There’s hope out there!

    Tim

  115. wekab Avatar
    wekab

    Hello my fellow AVNers
    ~ I am post op surgery day 8. I have been home since Saturday. I have a long road ahead of me, but I am very pleased with my results. Next time I will not get and epudural to control my pain. I have the longest lingering headache from that. One of the doctors called me today and I told him about it. He told me it was from that epudural. I wish I would have known that last Tuesday. I was able to bare full weight and I have no restrictions the day of surgery. The physical therapist that were working with me were like WoW!!!The doctor is just amazed at my results because he knew how stiff I was. I’m just anticipating the left one getting done, so I can get back to my normal life. I get tired easy so that’s it for now. Talk to all of you soon.
    Stay encouraged :)

  116. Moe Avatar
    Moe

    Here are my options: The 1st surgeon wants to do Core Decompression with a Tantalum Rod insert. The 2nd wants to do Core Decompression with a bone graft material injection (See procedure here: http://www.wmt.com/prodense/surgical_techniques_adv_core_decompression.asp).

    I’m just afraid of having a metal rod inserted. I feel that if the joint were to advance to collapse, then the rod would become loose and cause even more pain – pushing me to get a THR even sooner. The bone graft injection provides at least some stability in the drilled hole – and might initiate some new bone growth. So, I think I’m going with the 2nd surgeon: Core Decompression w/ Bone Graft Injection.

    To recap; I’m 33, male, with AVN in left hip in Stage 2- possibly early Stage 3 with no evidence of collapse on X-ray or MRI.
    Anyone have any feedback or suggestions? What would you do?

  117. wekab Avatar
    wekab

    @Moe~ I vote bone graft but the ultimate choice is yours!!! Anything that is already yours is worth keeping!!!
    My AVN was too far along and progressed really rapidly so I didn’t have any other option other that a full hip replacement. The 2nd one is scheduled for January 11, which I’m very excited about :)
    Stay encouraged!!!

  118. Vivek Avatar
    Vivek

    @ Moe.

    I still vote for a definitive option. One that gives you a fair amount of certainty. Both of these surgeries might only extend the date for the hip replacement if anything and in the bargain later when you are due for hip replacement you will have to deal with poor bone stalk and sorts. Also you will have to go in for only traditional long stem total hip implants which have the lowest durability and come bundled with restriction in activity.

    I have two hip implants a BHR and a BMHR. I’m still in recovery but I can tell you that soon enough It will be like any normal hip. Worst come to worst even if it fails I can go in for the THR.

    This surgery is obviously a big deal for you as anyone and get in all the facts weigh the pros and cons and make and informed choice. Dont rely on the doctor’s info alone it’s more often then not biased to a surgery the doctor is most comfortable with.

    Do look up on the internet about Hip resurfacing. How it is better than a THR and other information. I suggest you meet with a doctor who performs the BHR before you make your final call.

    I don’t want to dissuade you from the surgeries you have chosen, I am sure they have an edge over the others, but these are things I considered before making my final decision.

    All the very best. Do keep up posted.

    @ Wekab. How’s the new hip? Recovery? Hope you are doing super fantastic.

  119. Moe Avatar
    Moe

    Thanks Wekab! I’m having the decompression w/ bone graft injection this coming Monday morning. I hope everything is going well with your 1st replacement and wish you all the best for your 2nd!
    Take Care!
    -Moe

  120. Moe Avatar
    Moe

    Vivek, I appreciate the feedback. I just feel like this procedure right now will give me the best shot at delaying a THR – especially since I’m in early stages and not much pain – I can walk w/o any pain. I’ve talked w/ 4 docs all saying I’m a great candidate for this with great chances of success in at least delaying it for a long time. How long? Who knows? I’ve researched until I’ve almost gone mad. This person recommends this, this person says don’t do it, something worked for that person but completey messed up another… I’ve even read posts where people say don’t do the BHR that it’s a waste of time and just wait until you can get a THR. Saw many sites and even a Doc from India where they said the process should go in steps: try Core Decompression 1st if in early stages, if that fails get a BHR, and if that fails get a THR. So by them, you can still get a BHR after a Core Decompression. But who really knows? I’ve gone bloddy mad from reading Blogs about so many different outcomes of different procedures.. Good and Bad. So, I really don’t know what to do. But, I feel like this is a good place to start. Thanks again for the input.

    Best Wishes
    -Moe

  121. Vivek Avatar
    Vivek

    @ Moe.
    It’s great that you know what there is to know. All the very best with the surgery.
    I like what Wekab said “Anything that is yours is worth keeping”. Its like the wise words of a secret sage.

    Keep us posted.

  122. Moe Avatar
    Moe

    Thanks Vivek.. Unfortunately, I only know enough to know there is no “sure” answer for everyone. I apolgize if I sounded at all rude in my response. I asked for suggestions and you gave them. I’m just so frustrated with it all at this point. I’m sure you’ve been there. It’s an absolute emotional roller coaster and I’m ready to get off! :). Although I know I’m in for a much longer ride.

    Thanks again and Take Care
    -Moe

  123. wekab Avatar
    wekab

    @Moe you are so blessed to have found your AVN in its early stages so whatever you decided (I see you choose bone graft), I’m pretty sure its better than a full hip replacement.
    @Vivek my right replacement is going well. I took off the bandage yesterday and can’t wait to go to the first follow up in two weeks because then I can put maderma and cocoa butter on the scar. I’m a bit stiff but that will wear away over time and physical therapy. I have my left one scheduled for January 11 and I can’t wait b/c I’ll be able to walk normally after it has healed. I want to be back at the gym and working by march :). I was very excited two days after surgery. I was working with OT (occupational therapy) and I was able to cross my right leg!!!!!!!!!!!!!!!!! (I have no limitations)
    Be encouraged!!!

  124. Jack Avatar
    Jack

    Hi all,

    My name is jack and I am 23 yrs old and just found out that I have AVN in both hips. All I can say is that this website and comments have been the best research i have found regarding living with AVN at a young age. For me, the pain began on labor day 2010 and continued on and off for the last few months. I was unemployeed at the time and didnt have health insurance so i didnt go to the doctor. I thought it was mostlikely a pull or strain in my groin. Things continued like that until Saturday November 6th, 2010 (actually it was like 4am sunday)when i got pushed into a car while fooling around with my friends. The pain was bad but went away and i didnt think about it again. The sunday morning i woke up with the worst pain ive ever felt. I couldnt get out of bed and i had to be carried to the car by my father just so i could go to the hospital. (FYI, insurance from my new job kick in on november 1st, woosh) There i found out that i have AVN and was kept in the hospital for the next six days, during which i had a core decompression on my left hip. The reason i was kept for so long was due to the pain that i had and to perform tests to see what the cause was. After they came to the conclusion that the cause was unknown (no steroids, not an alcoholic, no auto-immune discorders, no SCUBA) they recommended a core decompression. After speaking with 3 other othro’s, and all of them pretty much saying the same thing, we decided to undergo the core decompression on my left hip (lesion 50%) and wait on the right hip since it was in stage 0/1. The surgery was performed on thursday November 11th and i was released on friday afternoon.
    Since then, I have been hobbling around on crutches and doing as much research on this disease as possible. Today is my first day back to work, which im regretting since my commute into NYC involves one train, one boat and about 4 blocks of walking. I was pretty tired by the time i got in this morning.

    I have so many questions that i cant find the answers to and i was wondering if any of you could help me out. How long after the surgery did the pain/soreness of the core decompression go away? Its only been 10 days but i still feel sore and i cant really move my hip too much without pain, is that normal? Can anyone give me a timeline of what is to come in terms of tests, doctor visits, PT, and mobility? (like when will my next MRI be, how offend did you see your doc, when your were able to walk “normal”?)

    Thanks for all your help and to everyone who posted about their experience.

  125. Gys Avatar
    Gys

    @ Moe – Best wishes on your surgery! Keep us posted :-)

    @ Jack – The fact that you’re young will very likely give you a good prognosis! I’m just 29 and though somedays I feel old because of my different health issues. I still count my blessings.
    Sorry you had to wait a while before you were diagnosed. I did too, but because I was undecided on what to do, and also spent time on a wheelchair and using crutches. It sounds like you were walking okay until you were admitted, so that probably means your muscles were working normally and were not atrophied before your surgery.
    I had core decompression on both hips on February 2010 – it seems like the procedure may vary some from surgeon to surgeon. So it will be good to know how yours was done to have an idea of your recovery (i.e.: which muscles were affected to access the bone during surgery)Just to give you an example if you see Moe’s link on the procedure he is having, it seems like he will only have one hole drilled(to get a bone core), necrosis debrided and then filled with bone graft. In my case I had various drill passes on each hip that were really small, and have no specific debridement of the necrotic area. The biggest chunk of bone that was taken out was in my femur, where the surgeon needed space to maneuver the drill bit in different directions towards the necrotic area. I saw my x-rays about 2 months after surgery and the areas where he drilled were not perceptible with a few exceptions, meanwhile you could clearly see the chunk that was cut off to insert the drill bit. People were amazed I was walking around after 2 months considering there was nothing really filling that missing bone area. Of course I can’t run, jump or do any high impact activity to protect bone integrity for at least a year.

    When you mean 50% lesion, does that mean you had necrosis on 50% of the femoral head? Just wondering. Seems like a big lesion…if it is so, you surely have a high pain tolerance if you could take that for a few months.

    I would highly recommend Water/Aquatic Physical Therapy because it has very little weight bearing and you can work the muscles around it. The surgeon can write a prescription for it. My surgeon was reluctant to prescribe PT until I mentioned the water option and then he thought that would be great. And indeed it was. I was on 4-point gait crutches for 6 weeks and was on PT by the 4th week. After I was off crutches, I walked like a duck balancing from one side to the other because I was sore on both sides. Now I don’t have the waddle…but I do wish I could still be in PT. Some days I’m sore, but it is mostly on the muscles of my thighs that need the right stretches and exercises.

    Since I didn’t have surgery for months after my diagnosis, I can tell you that the first thing I noticed after surgery was the fact that I didn’t feel that awful pressure/pain inside my hips(that is the main advantage of this surgery), all other pain and soreness that I felt after that are from the surgery itself.

    PT will strenghten your muscles a lot, and be also careful because you may end-up exacerbating pain on the opposite side as you try to compensate.

    Another thing I haven’t mentioned before and I guess most of us don’t pay attention to is the incision site. If iodine was used for surgery prep and afterwards it is best if its removed by hospital staff before you leave the hospital. That wasn’t done in my case…and I had an allergic reaction as soon as I recovered normal sensitivity in my legs (i.e. anesthesia effects were gone and pain killers were not taken anymore) I was scared to scrub it as it was painful and I had some iodine within 2 inches of the incision and it itched for weeks after the surgery I had to even get an itch calming body wash and soap. Most of us don’t give a second thought to itching.

    10 days seems like a short time for recovery, I was out from work for 2 months, but I also had decompression in both hips.

    Keep positive the pain will subside, if it doesn’t I would tell the doctor and if they can prescribe PT that really helps.

    Wish you the best!

    Gys

  126. Moe Avatar
    Moe

    The CD surgery went well. Checked in the hospital at 6am and was home before noon. When I woke up from the surgery the pain was aweful; felt it in the bone and the joint. By the time I got home, only felt it where they made the incision and the muscles around that – haven’t felt pain in the joint since. Today (2 days post-op) the pain in the muscles and incision is minimal. They told me to only put the toes of that leg down with as little weight as possible while walking on crutches, until I see the Doc for the 1st post-op appt next week. Oh, I did ask about hip resurfacing again right before the surgery (I had forgot to ask him at the initial appt since I had asked the other Doc in the same office) – He said it could still be done after this, but that he didn’t do it and would send me to an Ortho that he refers to for that. So, I’m glad that I found a Doc that didn’t recommend against BHR, and even willing to give me a referral.

    So, for now, it’s crutches for the next 5 weeks, and keepin my fingers crossed, hoping this worked to at least delay a hip resurfacing and/or replacement.

    Take Care
    -Moe

  127. wekab Avatar
    wekab

    Congrats Moe~ I have been out of the hospital from my surgery for two weeks and I’m still a little sore, so I know for me, its going to take some time. Happy Healing and that’s good that your dr. did not shut down your suggestion.

  128. Abe Avatar
    Abe

    My hip AVN was misdiagnosed and actually it was corticosteroid induced due to my colitis. However another Dr diagnosed the disease on JUN and had the core decompression surgery done on JUL. My left limb muscles were atrophied(and still is very weak) and the pain was unbelievable before and even after the surgery. The orthopedic Dr did the biopsy core decompression on my both hips; the right hip was at the Ficat stage II, and the left one at Ficat stage III. The right hip is so far so good and I am very happy for that, but the left one is still in pain but not the constant pain so I have to walk only by means of crutches. I am taking supplements, some DMARDs and physiotherapy
    (electrotherapy and so on) following two months of aquatic therapy. In the country I live there are good doctors but the BMHR surgery is not routinely done. Anyway I am trying not to have any kind of invasive surgeries because I will need revisions again (I am 32). My actual problem now is that my left limb length has become shorter than the other! I don’t know why exactly the length discrepancy occurred, but am still in the battle with the AVN boogeyman. I wonder anyone has more experience than me after decompression.

  129. colleen Avatar
    colleen

    Wow, what a great site to stumble upon! You don’t find many people with AVN to share stories with. Started having trouble in May, limping, leg pain, more pain-hip, knee, thigh. Ran into my oncologist and told him, got hustled in for a bone scan which was negative. (Had a little go-around with breast cancer, surgery and chemotherapy in 2007). Of course, the fear was bone metastasis. Oncologist called it bursitis. The pain went away for about 3 weeks and I resumed my activities, nothing too strenuous-yoga, hiking–I was still building back my strength after my long illness. Then the pain returned and got worse. One day in July after work I couldn’t walk to my car so I went to the ER (I’m a nurse, work at a hospital) It felt like my hip was fractured. XRAYs negative. They reaffirmed TROCHANTERIC BURSITIS and told me to go to my Dr. which I did and got a cortisone shot into my right hip . Ah relief- for 3 days- gobbling Naprosyn and Ibuprofen all day every day. When I called Dr. and begged for another cortisone shot he said “too soon” put it off 2 weeks and when I went in I had a large effusion on my right knee, he injected the knee–I was still having trouble localizing the pain, sometimes it was from my hip all the way down to my ankle, couldn’t bear weight. 2nd cortisone shot didn’t help at all so next I was sent to Physical Therapy and an MRI was scheduled. The therapist was good, he did a brief assessment and could see that something serious was going on. He said “This is not bursitis, I’m not touching you until that MRI is done.”-and he told me to get a cane.- MRI which showed Avascular Necrosis, off to the Orthopedic surgeon. Sure that I would need surgery, the pain was getting out of control,. She discussed core decompression-said most of her partners would whisk me off for it right away, said I could opt for it if I wanted, but her feeling was that rest and non-weightbearing is just as effective. 2 weeks off work, crutches for a month, pain meds round the clock. In the middle of all this I started acupuncture,( I had previously had good results with it for neuropathy which developed after chemotherapy.) I have been going about every 10 days. She inserts the needles along the hip joint and down my leg and hooks them up to a tiny generator and and leaves it on,” buzzing” for about 20 minutes. Well guess what, I have not used my cane for 2 weeks, walking with a slight limp but the pain is MUCH improved..MUCH improved using less pain meds. Ortho doc said NO to physical therapy. I see her again mid Dec. So I have my fingers crossed, I will continue accupuncture , maybe another MRI to check progression/reversal???? Doc said this could take 2-3 years to resolve. She is the only person that I have heard speak of resolution…but I’ll take that.

  130. David Avatar
    David

    I had the core decompression surgey on Oct. 11th of this year on my left hip.
    I was on crutches for 6 weeks and did exactly what the Dr asked of me duri ng that timeframe.
    Now, 7 weeks after, I have EXACTLY the same pain in my hip as I had before the surgery.
    I can barely walk without a cane and am VERY frustrated. I never did have much pain while walking, but getting up and putting the intial pressure on it is BRUTAL!!!
    No change since surgery.
    Does anyone know if this is normal? Should i give it more time?
    Please let me know if have any advice.
    Thank You

  131. Abe Avatar
    Abe

    @ David ; Yeah it seems very normal. The 6 weeks only on crutches seemed to be an ancient prophesy in orthopedic surgery! As I said earlier it is very normal because the damage to the hip joint is not going to reverse in one night, and you know it is a big joint and AVN is a devastating condition. I myself am still on crutches after 3 and a half months post surgery. But the fact is that I couldn’t use even crutches before surgery cause my pain was ghastly. I am undergoing physiotherapy every other day and my muscles are becoming stronger and the pain is really lesser. I recommend you some physiotherapy (electrotherapy,electromagnet field therapy,…), aquatic therapy & so on.

  132. wekab Avatar
    wekab

    @David I had a total hip replacement on the 9th of November and the doctor said I’m healing nicely and that I should just give it time. I have/had AVN very bad and I have my left hip scheduled for Jan. so things will get better. It will all come together. Stay encouraged!!! I can’t wait to get back in the pool as Abe suggested. Aqua therapy is awesome and helps!!!

  133. Joe Avatar
    Joe

    Hello everyone.

    My name is Joe I am 47 years old and of course I have AVN why else would I be here. Glad I found this site.

    I have been getting treatment by pain management for lower back tota;;y unrelated to this and when I went for my last epidoral consult I told the Doc that I was having pain in both knees. I asked him if it cold be coming from my lower back and what he was treating me for, He said he did not believe so checked me out and gave me a script for MRI of both knees. Hed got the results but did not tell me the diagnosis, just told me to contact an orthopaedic specialist. Turns out AVN Bilateral of the knees. Hope I am not boring you but this gets more intense. After exam with him he sent me for an xray as a secondary to se if it was visible on that also. Now I have had his pain since which neglected to mention since July of this year and this now Sept we are talking about. He explained what AVN was and showed me the MRI pictures and the damages per say. He also stated that there were several methods to approach it as and he wanted to research what was the most current as it was not to far advanced and he had another doctor consult with, and I said ok. In the mean time I was being treated for an ulcer so I could not take any anti inflammetory medicines. So you do know for pain I have to take dilaudid as it is the only thing that works for me. I only take it at night (bed time) If I really need it I try not to take it at all because it does not last long. any way getting baack to the story. Mid October I started having pain in the groin on the right side and the hip, so I called the Doc and he had me get an MRI of the right Hip. And of course they take both for comparison and in the mean time we still haven’t been given any course of action for my knees and I keep calling for the diagnosis of the hips. Ait turns out went to my family doctor for my routine blood work and we had our regular jam session and I discussed my situation with him and it just so happens he has copies of all of the reports from the MRI center and tells me the diagnosis of the Hips. I have AVN in both well. And he advised me to seek a second opinion immediately. I have done this and as it turns out my hips are actully in worse shape than my knees which I forgot to ask is probably why I feel so much pain in my knees. The doctor indicated to me the the femoral head has so much necrosis that decompression would not even advantageous as there is to much of a gap in the joint. However on 12/30/10 I am supposed to bilaterl injections of the hip done with out cortisone to see if that helps with some pain relief. Personally I doubt it. On Jan 5, 2011 I go back to see the new doctor and on of his associates that oes decompression but this will be to discuss the knees. He did state that the only recourse for the hips total hip replacement. So after I get the injections I write to say how made out and feel.

    Thanks for reading my rant

  134. colleen Avatar
    colleen

    Oh Joe, I am truly sorry. Here I am complaining and worrying about one crummy hip and you have this horrible disease in 4 joints. I can only try to imagine how painful it must be. I was back to the ortho surgeon yesterday and was proudly walking without a cane or crutches, but a limp none the less.Taking pain meds round the clock to keep me functional and working. My necrosis is scattered through the joint and down into the femur, an unusual presentation, she felt that hip replacement at this point is too aggressive. I agree. I will have another MRI in January to see what is happening. ( Anxious to see if the accupuncture is helping ) Spoke about hip resurfacing which might be a possibility. No one in my city does them, but she thought I would be a good candidate, We agreed that I would keep going until I can’t stand it any more and then talk about surgery. Also, may try a cortisone shot under fluoroscopy in January. The surgeon I see does not advise core decompression, just because of the small percentage of people that it helps, but said we might consider that before getting out the big guns. Hang in there everybody!

  135. Abe Avatar
    Abe

    @ colleen; FYI my pain was ghastly even I couldn’t laugh or even smile for months from the constant pain. After all I decided to give the physical therapy a shot.My therapist recommended me electro-acupuncture along with other methods in order to resolve mu left limp muscle atrophy. I didn’t expect the acupuncture to cure my hip, but after 3 sessions I admit the pain relief was fantastic. I don’t care whether the medical society accept it or not, the matter is that it is really working. At least it is much better than the NSAIDs and other painkillers and I don’t have to suffer from the adverse drug effect. I strongly recommend it for anybody who is suffering badly like me. AVN is a really devastating condition and we should use all the possibilities.

  136. Joe Avatar
    Joe

    Hello again everyone!

    AS I just woke here at a bit past 2am in the cold state of Pennsyslvania under the slight influence of my pain meds of which I have reached my limit for the time frame and only take at night and I can’t stand it any more, the pain that is. also I cannot fall back to sleep & I have a question.

    First please excuse any typos you know how that goes. OK As i said I have bilateral AVN of the hips and knees. has anyone experienced either while while sittiing down, lying, wlking or standing cracking in their joints? There are times when in bed the slightest turn or twistand I get some of the most painful cracking you would ever imagine and if you were here you woud hear it as well. It is in th knees more so than the hips but groin pain does intensify.

    With the bones hurting so it remids me of the of the old commercial on tv for the Army singing ( I’m hurtin in places I didn’t know I had) as you see the soldiers running in full gear or the drill sarge running them thru the obstacle course.

    also I have times whem my knees will buckle some times right after i have first gotten up in the morning or have been sitting and begin to walk accross the room, or depending on the terrain under my feet; I have also found this to affect me in the hips an through me off as well it not constant but a pain in the but all the same.

    So I wondered if anyone had any issues like this. I did some research and foud some about stating the joint locking up abit but not much refering to mine.
    A joyous Holiday Season to all and may our health progress in the New Year!
    Joe

  137. Sophie Avatar
    Sophie

    Yes, Joe. Alas, you’re not alone :P.
    I’ve got AVN in one hip, and sometimes there’s this audible SNAP when I stretch or as you said “twist or turn.” And in regards to the “buckling”, if I think I kknow what you mean, sometimes there’s such debilitating pain that your joint momentarily stops working and…buckles.

    I dunno. We’re all wired differently.

    Goodnight, I guess it’s always comforting to know,
    tou’re not the only one with questions :)

  138. Vivek Avatar
    Vivek

    Hey,

    It’s been a while since I posted here. If you are a regular here you probably already know my story from reading the previous comments.

    Bilateral AVN. Now I have one BHR and one BMHR. First surgery was in June and the next one in October. The pain at this point is very manageable and besides its only muscle pain that crops when I get carried away with my new hips.

    The crutches are long gone.I Take a walk everyday and gradually increase the distance now I walk about a mile everyday. Also stairs are no problem at all. I’m still in PT building muscle strength.

    I was just as confused and clueless as any of you guys here about what to do which surgery and all that but then all I really wanted was for the pain to stop. Just that. Thats all I wanted.

    Each of us may be dealing with AVN but the causes are different our body types are different and we may need different treatments, but the pain and discomfort is the same.

    The common idea is to get rid of the pain ASAP. In my experience I have learnt that its pointless to be waiting around for the perfect solution or trying to put away surgery because you think you are too young. I waited for more than a year with the pain and nothing really got better So I went on with the surgery.

    Stop waiting around for whatever or whoever. If your doctor asks you to wait and bear the pain for a little longer find a new doctor. Get on with it.

    Godspeed to all.

  139. wekab Avatar
    wekab

    @vivek~ your back yay!!!
    I got a lot of support from you and from anyone who read Vivek post, I vouch for hip surgery. It has changed my life around. I can do so much more and I just got the left one done so far. I’m scheduled for my other one to get done on Jan.11th. I just want to live my life how it was before all this pain. I’m going to be aware that I have a hip replacement but who cares as long as I don’t have the pain. I was so against hip surgery but I needed to so. Don’t discount surgery and seeking 2nd, 3rd opinions. I’m 31 so your not too young. My cousin who is not even 20 is having hip surgery from the effects of cancer and I know she is going to feel so much better after she has whatever type of hip surgery she will have.
    HaPpY hOlIdAyS and stay encouraged :)

  140. Vivek Avatar
    Vivek

    @ Wekab

    Its great to know you are doing well. I’m glad I could help. Do tell me about your cousin. It seems just like my story. What kind of cancer did she have?

    Steroids seems to be a leading cause of AVN and so if anyone out there is on meds to manage pain or inflammation, muscle relaxants and so on ask your doctor for one that does not have steroids.

  141. wekab Avatar
    wekab

    @Vivek~ I’m not sure what typr of cancer she HAD. I asked my dad and he doesnt know. She is 17 and a survivor that’s all I know. I’m so glad that you are doing better. I can’t wait to get my left hip done so I can slowly move on with my life!!! Stay encouraged~ I don’t know how to give you my e-mail address without it being displayed??? This seems like the only way that I can communicate with you??? I come on here just to see how you are doing :| lol

  142. Muthu Avatar
    Muthu

    hi all,
    I’m 24 and was diagonised with avn in both hips just couple of weeks back… Thanks for steroids which was prescribed for my asthma… Few months back i started feeling pain in my right hip and i just kept ignoring it.. pain use to come and go… One day suddenly felt a severe pain my left hip and was bit scared.. I researched on net regarding hip pain and came across steroid induced avn.. I was freaked and consulted the ortho.. He order for mri and results wr positive.. Stage ll in both the hips… I was in real shock as i knew there is no cure for avn except surgical treatment… I consulted almost 5 to 6 ortho and all recommended for core decompression with bone graft… They are gonna drill into my femur bone and graft with fibular bone… I mean they are gonna cut my fibula bone!!! I’m decided to try other options to avoid surgery…. Since im from India i’ll try ayurvedic treatment.. I talked to ayurvedic doc and he told early stage avn can be managed with ayurvedic treatment.. 2mrow my ayurvedic treatment will be started and will continue for nxt one week.. Basically ayurvedic treatment aims to lower th cholestrol and lipids level in the blood and stimulate the bone growth in the affected area.. Hopin for the best frm this treatment….. :)

  143. Jack Avatar
    Jack

    Hey all,
    Thanks for all your answers to my questions, especially to Gys. I figure i’d give an update on how things are going. As you may recall, Im 23 years old and i had a core decompression on my left hip on Nov 11th. I went to my Ortho for my six week check up and he said i dont need to use the crutches anymore. That was all the good news he had for me. My new xrays and MRIs show that the lesion, which covers 50% of my ball joint is actually growing and getting worse. I was not at all surprised by this since the pain, which intially went away after the surgery was back and just as bad as the weeks leading up to me entering the hospital. But now since i havent used my left leg in six weeks, the muscles have weakened and im walking with a worse limp. The pain sucks and ive already started using a cane. It probable doesnt help that i have to walk up three flights of stairs to get to my apartment. My doctor told me that physical therapy will help and im starting next week. I’m getting kinda nervous about what will come next. He said that he doesn’t want to do a total replacement on someone so young and that we need to see how bad the pain is by the next visit. I started shopping around for some other doctors at the hospital for special surgery in NYC, to see what my options are. any suggestion? Hope everyone out there is doing better than me…

  144. Joe Avatar
    Joe

    Firstly, Happy New Year to all.

    @ Sophie. Maybe I should have said my knees give out vs buckling if that makes more sense to you..

    Well this past Thursday 12/30/10 I went to one my Doctors associates for injections. He injected lidocaine without any steroids into both hip joints. Of course this under a floroscopy xray first the right then to the left. And wouldn’t you know it he can’t line up the injection site after he has stuck me and begins probing. Ofcourse I am lying there in agony as he is doing this and I gave him a 3 second chance to finish or he was done. He finally hits his mark; only to have had some of the medication affect the femoral nerve and my entire leg from the groin where he is working to my knee goes completely numb.
    Aside from the fact I have tensed up from the pain of him probing and making the injection he asks me if I can lift my leg up. With a spasm in my back you can use your imaginations as to what I said to him I couldn’t even take a deep breath yet and he wants to know if I can lift my leg. Finally my composure returned and he and the nurse helped me sit up and swing my legs around to try and stand. Only one problem now because I can’t feel my left leg I can’t bear any weight on it and collapse bagainst the table. Needless to say I am not a happy camper. After about an hour of sitting in a wheel chair he checked my range of motion on an exam table and asked me if the AVN pain in the groin/hips was better. I said yes but it is only because you numbed up the joints.. As it was I walked out with a worse limp then I walked in with because I coud feel my left leg. Now it is three days letter I can pretty much feel my leg again and they can keep their injections. I have more discomfort in the groin especially when I sit. It is a horrible pressure feeling which is very uncomfortable and I still have the pain from the AVN only now it’s like having been to the dentist for a root canal. Only there is no pins and needles sensation as the med wears off. I go back on Wednesday the fifth to see the surgeon and another surgical associate of his that does Core decompression to discuss the possibility if it is worth trying in my knees as the bone death he advised me was to much in my femoral heads to attempt it.

    At this point I think I would rather suffer with the regular pain then the feeling I am presently experiancing.

  145. Vivek Avatar
    Vivek

    @ Jack.

    I am 22 and have had both my hips resurfaced. There is no point in waiting any further. I’m very sorry that the core decompression did not help but you need to move on.

    You are NOT too old for hip replacement. There is a life that is pain free and it is just one decision and a new surgeon away.

    I say find a new doctor ask what your options are and go ahead. I suggest you find a doctor who is familiar with hip resurfacing. I;m not sure if it is possible after a core decompression but as your doctor.

    I would say go in for a replacement/resurfacing at the earliest because as the lesions keep growing your options in terms of implants keep decreasing.

    Anyone who has got a hip replaced will tell you they wished they hadn’t waited so long.

    I’D SAY DON’T GO IN FOR PHYSICAL THERAPY.A lot of people here can tell you that PT is a bad idea and given your situation it could end up doing more harm than good.

    Get yourself as much rest as possible and a new doctor.

    All the very best.

    @ wekab. Vivek vishwanathan at hotmail dot com is my email id.

  146. sandy halbert Avatar
    sandy halbert

    hello everyone, i am going to tell my story that is going to need your patience and your prayers.

  147. sandy halbert Avatar
    sandy halbert

    HI EVERYONE, I AM NEW AND MY NAME IS SANDY, I NEED YOUR PATIENCE AND YOUR PRAYERS. I DX WITH AVN IN BOTH HIPS WITH THE R ONE BEING THE WORST. I WAS SENT TO A ORTHRO DOCTOR WHO WAS IN A HURRY TO DO CORE DECOMP ON BOTH FEMURS, IT DID NOT WORK. 2 MONTHS LATER HE RUSHED ME BACK TO SURGERY TO DO A THR ON THE R HIP. ABOUT 6 MONTHS LATER THE DOCTOR HAD TO REPLACE THE HIP REPLACEMENT FOR A SMALLER ONE AND AT THE SURGERY THE AVN HAD MADE MY BONES VERY WEAK AND CRUMBLE ALL TO PIECES. THIS HAD TURNED INTO A SERIOUS SURGERY. HE HAD TO PUT A PLATE IN WIRED IT TOGETHER IT WAS A MESS AND THE PAIN, NOTHING HELPED. WELL IT CONTINUES TO HURT FOR A YEAR AND HALF, UNTIL THEY SENT ME TO A VERY WELL ORTHRO DOCTOR THAT KNOWN ALL OVER THE WORLD. BELIEVE IT OR NOT HE TOOK ME STRAIGHT TO SURGERY AND PUT IN YET ANOTHER HIP RPLACEMENT AND CLEANED UP THE OTHER MESS THAT THE OTHER DOCTOR HAD DONE. NOW A YEAR OR 2 LATER I AM NO BETTER, I LIVE IN CONSTANT PAIN, MY HIP STARTED TO DISLOCATE AND WE HAVE TO RESET IT, ILIVE ON MY COUCH WITH LEGS ELEVATED WITH PAIN MEDS AT MY BEDSIDE. YOU SEE I WAS 49 YEARS OF AGE WHEN THIS STARTED AND NOW I AM 56, I WAS A ER NURSE, MOTHER GRANDMOTHER, WIFE SISTER AND MUCH MORE THAT HAS ALL BEEN TAKEN FROM ME OVER A DISEASE CALLED A.V.N. THEY SUSPECT THAT I HAVE AVN IN BOTH SHOULERS,KNEES,JAWS WHERE MY TEETH ARE CRUMBLING.I AM SORRY IT TOOK ME SO LONG TO TELL MY STORY BUT I WANTED TO GIVE YOU ANOTHER SIDE OF THIS DISEASE. AND THE LAST THE THING THEY CAN DO FOR ME IS TO REMOVE THE ENTIRE HIP AND THE ENTIRE LEG. GOD HAVE MERCY ON, THANK YOU FOR READING THIS CONDENSED VERSION OF MY AVN DISEASE.

  148. Gys Avatar
    Gys

    @Jack and @Vivek

    Jack, I would agree with Vivek in that you’re not too old for hip replacement, and even resurfacing. But I also think that getting second opinions from experienced surgeons is the way to go. I see us here as a ‘support group’ of people with the same condition, but not necessarily at the same stage or even in the same joint. So what works for me would not necessarily work for some of you. I read stories about core decompressions that failed or that were done at a later stage, and I still took a risk, mine did NOT cure me, but it has given me some time, considering most surgeons, even the experienced ones, are hesitant to do resurfacing or replacement on a woman that hasn’t had kids yet (I’m 29), unless the pain is unbearable and collapse and arthritis are clearly visible. I have been able to take care of other health conditions and improve my overall health.

    I do get sore and still have somewhat of a limp, and I have read here and other places that physical therapy can worsen things, well I can tell you that for me it has helped, and in the months since I was discharged from it, I have had muscle pain and soreness, though not anywhere close to the pain before core decompression. As a matter of fact I’m seeing my surgeon on Monday for a follow-up and will be asking for another physical therapy prescription. I would disagree with Vivek on this one, I think some therapists are better and more knowledgeable than others. If you don’t see results from it then don’t go that route, but if you get any relief or at least more strength and mobility give it a try!

    Hip resurfacing is possible after core decompression, though every surgeon will have a different opinion and it also will depend and how the decompression was done and other factors. So I would agree again with Vivek in checking out other surgical opinions. Write down your questions ahead of time, even the ones that you may think are silly or stupid. A good surgeon will be willing to answer them all.

    As I mentioned before, our AVN can be different and some of us have other health conditions that do affect our surgical decisions. Some of you have AVN as your main source of pain and discomfort and you’re focused on taking care of it so you can move on with your life. Some of us have other conditions that play a role in how we treat and manage the pain and discomfort of AVN. My priority for 2011 was to finish my weight loss journey (30 lbs to go) and move on to maintenance and strengthening the muscles to see if I could bargain with my orthopedic surgeon and be cleared to finally run and improve my 5k time and then proceed to longer distances and more cycling. But my life was just thrown into a totally different direction with a diagnosis of Thyroid Cancer just some days ago. So in my case the priority is getting the cancer out, and seeing what 2011 holds for me. I still have plans to at least strengthen my legs. Since I am aware that AVN still resides in both my femoral heads I will discuss my options with my surgeon and realize that maybe running is not a good idea, maybe I could consider it after resurfacing, but who knows!

    And I would tell all that living in pain is not cool, while some can handle pain better than others, pain from any disease or condition affects your whole life and those around you even if you don’t notice it.

    Hope you all have a better year in 2011!! :-)

    Gys

  149. Jen Avatar
    Jen

    Hi Guys,

    I am a 31 year old female and ive been diagnosed with AVN. 3 months ago I had my 2nd child, my 1st child was is 13 months older. I started limping when i was in my 3rd trimester with baby no. 2 and had pain in my leg, thigh, hip.

    After delivering my baby, i complained to the midwives and they just told me it was pregnancy related and the pain would disappear in a few days. The limp got worse and so did the pain. After x-rays and ultrasounds, the docs told me I had transient osteoporosis, which is a condition that develops in pregnant women in their 3rd trimester and was told that the condition would resolve itself within 12 months.

    I had a follow up x-ray and MRI which suggested early stage AVN. The ortho surgeon suggested i stay on crutches for 6 weeks then see him again. I again did another MRI and X-ray which showed the condition worsened.

    My husband & I visited the ortho surgeon with the scans and he told us i needed surgery the next morning because the condition worsened. The next day I was admitted into the hospital and underwent Hip Arthroscopy & forage (drilling procedure)

    I am now 10 days post op and i’m on crutches for the next 3 months. I start a rehabilitation program next week. I am unable to care for my babies and my life has changed completely. I’ll keep you posted about further developments.

    Take care!

  150. Easa Avatar
    Easa

    I’m a 29 year old male diagnosed with AVN in February of 2010. The MRI scan revealed about a quarter size dead spot on my right femural head. I’ve played soccer all my life and starting experiencing pain in my hip about 2 years ago. I chalked it up to be a muscle strain at first but the pain continued to get worse so I finally went in last year.

    I’ve seen 3 orthopedic hip specialists in the Seattle area over the last year and am not satisfied with the feedback I’m receiving. I’ve done my research on this disease and it does look dismal but I’m not convinced these are the doctors I should be seeing.

    My case is not as severe as most of the posts on here but this disease has altered my life forever. I started on crutches last spring for 3 months. The pain died away during that time as a result of the lack of weight bearing activity but started back up when I went back to walking. I can no longer run….I have trouble walking for more than a few minutes these days. I’ve been going to an acupuncturist for awhile and that has really quieted the pain. The only problem is a recent MRI indicated the bone disease was getting worse.

    I went in for an MRI last week and the results show about a 15% change from last year. The dead bone spot is now larger…It’s somewhere between 25% and 30% of the overall femural head.

    I’m not interested in surgery. The doctors tell me that there is a possibility the bone disease can heal itself but at what stage is that not possible anymore? I want to find the source of the problem. Why is the blood flow restricted? None of these hip specialists mention anything about the femural artery. All they want to do is cut. Why don’t we try to figure out the root of the problem?

    Any feedback on vascular specialists or physical therapists would be much appreciated as those are my next avenues to explore. I’m not letting anyone cut me until I’ve exhausted all possibilities.

  151. Muthu Avatar
    Muthu

    hey easa
    Avn is a chronic disease which requires life long management… When the blood supply to the bone decreases or restricted the bone cells dies. But our body tends to replace these dead cell with new one but the rate cells death will be so high that body will not be able to replace them all… As time passes dead area in the bone increases and eventually leads to collapse. This is irreversible….

    Why artries that supply blood to bone gets blocked??
    There are many reasons. Main reason are long term steroid intake and alcohol abuse. These reduces the liver’s ability to break the cholestrol and this cholestrol gets accumlated in the artries of the bone thus reducing or restricting the blood supply to the bone.

    Why only femur head gets affected in most for the cases??
    This is because of the god’s mistake while designing human skeleton. Unlike other bones in the body, femur head does not have multiple blood supply so if artries gets blocked than there is no way the blood reaches the femur head.

    Why these artries cannot be unblocked?
    Even i’m not sure y doctors does not treat this root cause. Probably there is no way to unblock the tiny artries inside the bone. So doctor only talk abt cutting the diseased bone.

    At what stage the avn can be reversed??
    If the lesions are less then 10% then there is a possibility that avn is reversed…

    I’m suffering from steroid induced bilateral hip avn from past two months. Stage ll… Docs recommended for core decompression with bone graft… Core decompression is only time buying surgery for THR which lasts only for abt 5 to 6 years and its success is unpredictable. Since i’m 24, surgery is not a gud option so i’m exploring all possible non surgical methods to manage my avn atleast for next 5 to 6 year so i can go directly go for hip resurfacing surgery later.

    Right now im undergoing ayurvedic treatment which actually treats the root cause and not its symptoms. For example, in ayurveda they are treating me to reduce the bad cholestrol and increase the level of good cholestrol in the blood which actually helps in removing bad cholestrol in the blocked artries. They are also treating me with herbal medicine which stimulates the production of more osteoblast thus increasing the rate of new bone cell productions rate…
    As of now i feel no or minimal pain in my both the hips and also stopped limping…:) this treatment continues for next three month, then i’ll have another mri to check the progesss of avn… If it has not progressed then i’ll continue with ayurveda treatment else i’ll check for other options……

    Bye for now and take care…:)

  152. Vivek Avatar
    Vivek

    @muthu.

    Clearly you are from India and most probably from south india. Its great to know that ayurveda is working for you. I tried ayurveda for more then a year with no improvement. Infact my avn got worse and I finally got bot my hips resurfaced. I’m 22. Dr Vijay Bose did my surgery.
    I’d say keep in touch with your ortho even as you go ahead with ayurveda.

    Do let me know where you are from and at which ayurvedic hospital you are getting your treatment.

  153. Easa Avatar
    Easa

    Muthu –

    Thanks for the response. I’ve done my research on this so I know most of what you had stated.

    My main question was regarding the reversal of this bone disease. Where did you hear the 10% number from? My doctors couldn’t give me a definitive answer on this. I understand that there is not a lot known about this disease so it is hard to answer questions like that but I’m still frustrated about the hip specialists point of view.

    I feel like I’m more in the early stages as I’m borderline stage 2 with about 25% dead spot of the overall femural head.

    Have you guys tried any blood stimulation options? I went to a phyiscal therapist before my doctors knew I had this. Originally they thought it was a adductor muscle strain. They sent me to PT and during that month my AVN pain was gone. I wasn’t running or playing soccer at the time so that probably had a lot to do with it. The physical therapist I worked with massaged the area, applied electro stimulation, and taught me multiple stretching exercises which improved the pain.

    I understand the ramifications of this disease but why isn’t there more information on the femural artery. The doctors ruled out the typical causes of this….steriods, deep sea diving, alcoholism, tiny fractures for me so I’m left with nothing. If these didn’t cause my AVN then it has to do something with the femural artery.

    Has anyone had any investigatory surgeries where they would just go in and try and locate the source of blockage? Why is it that at 10% there is a possibility of reverse but after that not so good? Is that because the dead bone is so large that no matter how much blood it receives it will not revive?

    I’m interested in any feedback on the blood side…All of the posts on here seem to only consult orthopedic hip specialists. Do you guys realize that these doctors are surgeons and they have an agenda to push for surgery so they can make their money? I understand in the case for people who have severe AVN that surgery makes sense.

    But what about all of us out there with stage 1/2. My goal is to stunt this and reverse the process. I don’t care if I’ve to be on crutches for a year. I was on crutches for 3 months during the spring and I took before and after MRI scans and the scans revealed no progression in the disease during that time. The last 6 months I’ve been walking again but my recent MRI showed the disease getting about 15% worse.

    Is is possible at my stage that limiting weight bearing activity will contain this disease….and possibly add some blood stimulation exercises to allow for the dead bone to heal. I’m I being too optimistic about this? Thank you all for letting me share my feelings here. It’s nice to be able to express the frustrations we are dealing with because those who don’t have this have no idea. I will never take walking for granted again.

  154. Gys Avatar
    Gys

    @ Easa:

    I’m 29 also and have had bilateral hip core decompression.

    I think it is admirable that you’re willing to find a way to reverse this disease.
    From what I can gather in your original note, you’ve had symptoms of AVN for about 2 years before you were diagnosed. That’s quite a while to put up pain or discomfort, though I’m aware that we all have different pain tresholds.

    I have read from others and from you the percentage of lesion in the femoral head, but I personally have not asked what percentage is mine(my bad), so I can’t compare mine. I did visit my surgeon just a couple of days ago as he was following up on my decompression results (done February 2010) I found out that the right lesion is healing (not fully healed though) while the left one looks larger and has a very hard to notice collapse(since the femoral head still looks round at certain angles). But he was really encouraging and did not think I should have surgery right now and to follow-up in 6 months. Considering he is a surgeon I did appreciate his point of view. He also recommended that I avoid running for 18 months. Even though I have lost over 30lbs, running may actually accelerate bone collapse and even be an obstacle for healing on the other hip. He encouraged weight resistance exercises for leg strength, range of motion exercises, stretching and he also said cycling, swimming and non-impact sports should be fine. I used to play soccer too but not as long or as recently as you, but I do imagine you may be in better shape if you kept dealing with the hip pain for 2 or so years.

    I agree that you shouldn’t settle for the opinion of a few doctors. Specially the ones that keep pushing surgery as if you were going to die if you didn’t h. I personally like to look at surgeons in the eye and ask them if they REALLY have experience doing X or Y procedure and what is their reported outcome. I also ask them if they would have their daughter/wife/sister undergo they same procedure they are suggesting or explaining to me. If they can’t look at me straight in the eye even when they say ‘yes’, I move on and find another doctor. But that’s just me!

    As for blood stimulation, I have read that hyperbaric therapy seems to help in the early stages of AVN, though there are not that many studies to prove it, and most insurance companies do not cover hyperbaric therapy for AVN and that is one of the reasons I did not try it as I already had plenty of bills to cover because of other health conditions. I think it is worth the try, just evaluate the side effects of the treatment and consult with a doctor if you have any other health issues.

    As both vivek and muthu have mentioned lowering cholesterol levels may play an important role in healing. Mine has been consistenly lower in the past 8-12 months and thankfully my right hip seems to be healing. I’m not doing ayurvedic therapy as I’m in California and do not know any providers.
    I know the possibility of AVN healing on my left side is not very high, but it is possible. But I also think that there are different surgical options that I could go for in case of serious collapse.

    I think physical therapy helps a lot to manage pain and who knows even circulation to the area. I am getting PT since I keep having tightness in the adductor/abductor muscle area and the psoas major. I have to go back to weight training for my legs, since I noticed great improvement in my balance and overall coordination along with helping me walk without a limp or pain.
    I also saw a massage therapist specialized in deep tissue massage and a chiropractor specialized in sports medicine and Active Release Technique. These type of providers can help manage pain and any disfunction caused from limping or overcompensating that can cause pain in other areas like the knees.

    You’re also right about not having enough information as to why the circulation in the femoral area fails. But as you have researched AVN is not just limited to the femoral head, is just that it is the one that is mostly reported and also the one where most doctors can pinpoint a possible cause besides just plain idiopathic.

    Some doctors also don’t care how it happened and how to stop it from progressing, they usually want to manage it surgically. What some of them don’t tell you and I’ve learned from constant research is that if you still have AVN and have a resurfacing, that procedure may fail because there can be further bone collapse after the surgery. That is the reason why some surgeons refuse to do resurfacings on patients with AVN even if the have arthritis. Because it carries a lot of risk. I have even read from surgeons that in some cases a person’s AVN may stop progressing, but they can’t explain why, or if their treatment really helped, was it a change of diet?, or was it the limited weight-bearing? There are not enough studies. So I advise that you proceed with what you think works best in your situation and where you see any improvement pain-wise.

    I also have not read anything about doctors trying to find the source of the circulatory blockage. That would be awesome, if they actually did!

    Check out this article:

    http://emedicine.medscape.com/article/86568-overview

    It has some info on possible causes, besides the usual stuff you hear from orthopedic surgeons.

    Just so you know. My AVN was in stage 1-2 when I decided on bilateral hip core decompression, but that took months for me to decide. Even after I had seen over 4 specialists and had even met the surgeon who eventually did it.

    You’ve probably heard or read about this, but sometimes being in crutches/cast can lower your bone density. So it is important to have some weight bearing, which I know can be limited by pain. That is why I am big advocate of physical therapy. Because the more it hurts, the less you want to move the leg or put weight on it, and the more you do that, it is higher the possibility that you will have a weakened bone.

    I think being optimistic helps. Despite the fact that I was just told that I have slight collapse I am still optimistic about the other femoral head that seems to be healing. And I honestly don’t mind driving 100 miles one way to the Napa Valley to see my surgeon and then come back to work, because so far he has been honest and straightforward with me and is not eager to make money out of cutting me open.

    I will never take walking for granted either! Much less going up stairs!

  155. Joe Avatar
    Joe

    Hi guys.

    Well today I went to see the another surgeon who specializes in sports medicine from the medical group I am dealing with. The doctor I saw is the team physician for the Philadelphia Phillies and they also provide care for the other sports clubs of Philadelphia.

    He reviewed my MRI’s of both knees and examined me and evaluated the level of AVN I have in my knees and advised me that my right knee is at the stage where core decompression should be done in an attempt to re-juvenate the blood vessels and promote new bone growth before the AVN progresses and the joint collapses. He did give me a little good news (if you want to call it that) even though I AVN in my left Knee it has not advanced to a stage as of yet to where any type of intervention by surgery is needed. So I am no scheduled for surgery on the 28th of this month. I well aware that there will be pain from the operation. How much worse could it be from the pain I am dealing with on a daily basis? He makes it sound like the results could be very positive however I am very optomistic as based on most of the research I have done most individuals ended up having their knee replaced within 2 years of the surgery any way. Anyone have thoughts I am all ears.

  156. Liz Avatar
    Liz

    Greetings, Brothers and Sistas :-D

    Peace and Connection,
    Everything has got to get better.
    If it takes replacement, then we will do that.
    Most people find us unique to have AVN.
    We are extremely unique with passion of mobility without pain.
    It’s been 2 years with Bilateral HR.

    A sense of restructuring our lives for new birth of life.
    Moving, mild pain last minutes, or hours in right hip and right knee. managable.

    We will love our new joints of mobility on this earth.

    Most of us have a history of purpose to be active.

    I have started dancing again. Just no dipping to the floor.

    Join me for this rebirthing, reliving process w/ AVN.

    Respectfully, Compassionately bonded on this Earth.

    We truly feel each others pain and moments of darkness.

    I am here for you all.

    Keep the Hope Alive,
    Everything has got to get better
    Peace and Connection
    Sista AVN Liz, :-D
    [email protected]

  157. Muthu Avatar
    Muthu

    @vivek
    I’m frm bangalore and undergoing ayurveda treatment in hassan karnataka..
    I hav few questions for u,
    1. At wat age ur avn was diagoned?
    2. At wat stage of avn u had hip resurfacing.?
    3. Wat is the cost involved for the surgery?
    4. Wat is the life expectancy of the resurfaced hips?
    5. Wat activities r restricted after resurfacing?
    6. Any loss of sensation in the legs after surgery?

    I have heard that persons with avn are not a good candidates for hip resurfacing. So wats ur thoughts on this? Even i’m planning to get my hip resurfaced if ayurveda treatment doesn’t work.. So i want to get more details frm u regarding the surgery and dr vijay bose.

    Here are r few questions for forum,
    1. Is there any possiblities that avn can stop progressing at any stage… I.e. Stage l or ll or lll
    2. Y doctors doesn’t give a option of stem cell threapy which is actually a less invasive procedure.

    Thanks all..

  158. Vivek Avatar
    Vivek

    Great post liz. Very encouraging.

    @ Muthu.

    Hi, since you are trying ayurveda try getting in touch with arya vaidya pharmacy coimbatore. Dr Ravindran there is really good.

    Now to answer your questions.

    1- Diagnosed at 20.
    2- Right hip stage 2 and left stage 3.
    3- Cost will depend on hospital and doctor.
    4- With the rsurfacing implant the expectancy is at least 15-20 years because the size and shape is designed to be as similar to your original hip joint as possible. Its called an anatomical prosthesis.
    5-No restrictions.
    6- No.

    Dont wait for too long. I made that mistake and because of that I ended up with one BHR and the other had to be a BMHR.

    Different doctors have different opinions about hip resurfacing and AVN. Dr Bose specializes in hip resurfacing for AVN patients. I have got the surgery and I’d recommend it to anyone suffering from AVN.

    Also to answer your other questions AVN can stop progressing but Its highly improbable that it can heal itself. Say the AVN stops progressing at stage two, you are still stuck with stage two AVN for the rest of your life.

    Again with stem cell therapy there is no saying if or if not it can help. Also it is crucial that you are in a very early stage of your AVN.

    I had all these options open to me before surgery but as i had realized from my research the only real cure for AVN is replacing the joint. All the other surgeries just postpone your replacement by a few years. I decided rather than having multiple surgeries, I’d just have one and put and end to the misery of this wretched disease. Also resurfacing may become complicated after these may or may not help surgeries.

    Vivek vishwanathan at hotmail dot com is my email id. Feel free to mail me if you want to know anything more.

  159. Vivek Avatar
    Vivek

    @ joe.

    I’m not sure if you have AVN in your hips as well. I was diagnosed with AVN hips and after 6 months came AVN knees.

    But as my doc explained it is not really AVN but an adverse reaction caused due to the AVN in your hip joint. AS soon as you treat your hip condition your knee will fix itself.

    When I was told this I did not believe it but as it works out its true. I had knee pain till I had my hips fixed and in due time my knee pain faded out. So I’d say wait till your hips are fixed. Concentrate on the hips fixing before you start with your knee.

    And even if it is AVN in your knees I still feel replacement will be a more permanent fix. After all even you know it is only a matter of two years at the most.
    Make an informed call. Don’t let your doc decide. You are the one dealing with the pain not your doc.

  160. Joe Avatar
    Joe

    @ Vivek.

    I have AVN in the hips as wellas the knees. My femoral heads are very deterioated but my pain level is not near as great as it is in my knees. So since the doc asked me if he could fix one thing when we first met what would that be I said my right knee. Of course that was not knowing my body was in such a bad way until after i spoke with him. If they feel working on the knee first is the way to go I am ok with that. They are a renound medical group (www.rothmaninstitute.com)and I have full confidence with the recommendations they make. I do appreciate your input.

  161. Muthu Avatar
    Muthu

    @vivek,
    Thanks for ur response… I’m just scared of surgries thinkin that i might lose my active life.. With ur response i feel confidient….:)

    Well, 2mrow my first ayurvedic session is going to end and i should be able to go back to wrk by monday..but 2weejs later i should come back again for 2nd session… I just spoke to doc couple of moments back, according to him stage ll avn cannot be reversed completely but can be managed for couple years so that hip replacemnt can be delayed but results of treatment are unpredictable. I wish atleast my avn stops progressing instead of reversal atleast buying me some time before going for the surgery….
    After a long week in the hospital i’m very excited to back to work in blore…:)

  162. Easa Avatar
    Easa

    GYS –

    Thanks for all the feedback. That’s all very informative. I’d like you to keep me posted on your progress with the core decompression. It sounds like you said it is working for one side. I’ve yet to hear anyone with successful core decompression surgery.

    So is that dead bone starting to shrink on your MRI? How can you tell it has gotten better? Is that merely from the pain going away?

    I think you are right on about finding a program that works for you. Everyone has different experiences with this bone disease. I’m fortunate enough to only have this in my right hip. I started feeling pain about two years ago but in the beginning the pain was only present during and after playing soccer. It was pretty intense but I think I have a pretty high pain tolerance.

    About a year ago the pain became so severe that I had to stop running and playing soccer. It kills me to be sidelined as I’ve always been an active person and now I’m left with swimming as my only means of exercise. I guess biking is the other option but not a total body workout.

    I called the orthopedic hip specialist that I’ve been working with last week for a vascular referral. His assistant called me back and said he would not write a referral for that but would write one for a physical therapist. That just seems a bit fishy to me. He reviewed my recent MRI which showed the bone disease getting worse but only told me to continue doing what I was doing and to come in for X-rays in February. That’s horrible advice. So you’re telling me to just let the bone disease take its course? No thanks…I like to be proactive rather than retroactive. That’s the damn problem with this. All these hip doctors are being retroactive rather than trying to help people solve the problem. Again this is a blood flow issue. I don’t mean to beat this into a wall but the medical community needs to stop bandaiding the problem by cutting and solve the real issue.

    I’ve gone ahead and made contact with some vascular specialists and am waiting on some calls back. My hope is that they will see me without a referral. At this point I’m using crutches to limit my weight bearing but I’m also walking on it a bit a home so it doesn’t get weaker like you had mentioned.

    In the end I may be too optimistic about containing and reversing the disease in my body. However, with advances in medical technology who knows what will come of this disease 2 years from now…..5 years from now. If I can contain it for some time and push off surgery for another 4-5 years then who knows maybe they will develop a better way to treat and heal AVN. I’m in an awkward position with this bone disease as the dead spot is not large enough to warrant a hip replacement so what does that leave me? Core decompression….no way after all the things I’ve heard. Why go through all the other surgeries when in the end you will have to get a hip replacement.

  163. Easa Avatar
    Easa

    GYS –

    I forgot to comment on this statement that you made:

    “You’re also right about not having enough information as to why the circulation in the femoral area fails. But as you have researched AVN is not just limited to the femoral head, is just that it is the one that is mostly reported and also the one where most doctors can pinpoint a possible cause besides just plain idiopathic.”

    You are correct that AVN is not limited to just the femoral head but the fact that it is the most common place for AVN to develop would lead me to believe the femoral artery is the culprit. Do a search on google for medial circumflex femoral artery. This is the branch off the main femoral artery that provides blood directly to the head of the femur.

    http://www.wheelessonline.com/images/hip65.jpg

    Here is a very good sketch of what it looks like. There needs to be more attention directed toward this branch line. I think part of the problem is most people don’t even know they have this disease until it’s too late. Well for those that catch it in time there needs to be more emphasis on locating this blockage so the blood flow can resume.

  164. Muthu Avatar
    Muthu

    gys
    I just came across new technology in stem cell threapy called ‘ossron’ for avn. Its avaliable in India nd korea but not sure abt other countries. Success rate is abt 90% for stage l nd ll avn.
    I just talked to doc regarding this, Its a minimal invasive surgery in which they’ll collect our healthy bone biopsy and culture the osteoblast in the lab for 4 to 5 weeks and then implant it during core decompression procedure. It costs around $5000 for single hip and its covered under insurance.

    Well, what u guys think…. Is it worth trying…??

  165. sandy halbert Avatar
    sandy halbert

    Hi everyone, I wrote my story on my avn ealier, but my doctor did not tell me about the stages you go through, can you explain to me the stage 1, and 11 and stage 111. And can you explain what is the chances of dying, I have had every surgery and exercise, and every medication there is I guess what I am doing is what is our prognosis? can anybody tell me about the truth that lies before us?

  166. Muthu Avatar
    Muthu

    Well guy, have to ask you one question.
    Does anyone have knee avn?

    From past few days i’m having to mild pain in my left knee and its localized. i can feel it only while standing and not while walking. As of now my i don’t feel any pain in my hips while walking but i’m much worried abt left knee….:(

  167. Liz Avatar
    Liz

    Hi Muthu
    Yes, I had similar symptoms.
    MRI definitive diagnostics.
    It was in my knee also, weight plays a role in that because the distribution of weight is most in hip and knees.
    Cortisosteriod injections might help for 3 mos.
    Liz

  168. Muthu Avatar
    Muthu

    Thanks Liz…

    2day i’m going to ortho and probably have an knee mri.
    but i’m realy worried…!!!

  169. Liz Avatar
    Liz

    Hi Muthu,
    Don’t worry I had the same thing done and we must understand that this is just information to confirm what is going on.
    We have options and I did have the orthoscopy done and it was 30 min outpatient procedure w/ ice at home on knee and little pain medication to promote blood flow to the area. I lost some weight and worked out at home and YMCA to strenghten my knee. Just relax.
    We are here for you.
    Nurse Liz,

  170. Liz Avatar
    Liz

    Hi Sandy,
    Check out this website: http://www.nonf.org/nofbrochure/nonf-brochure.htm
    hope this helps.

    Research: http://www.osteonecrosis.org/pages/osteo.html

    I think stages 1-4 collapse in 4th stage, then surgery (replacement).

    Liz

  171. Muthu Avatar
    Muthu

    Gys,

    Well, i got a call from Mumbai for Ossron therapy for Avn in my both the hips.
    By this week i’ll be going to Mumbai for this therapy.

    Here is the procedure,
    1) Collect bone marrow (10ml).
    2) Harvest for 4 to 5 weeks.
    3) Implant back to the necrotic femur head during core decompression.

    Recovery peroid 6 to 8 month if successful.

    Useful Links,

    http://readit.in/society-news/health/2010/03/rms-shares-dr-suhas-khanvilkars-recovery-story-from-avascular-necrosis/

    http://regrow.in/news-n-events/news-n-events.php

    http://www.spinesmithusa.com/docs/10_Hernigou_The_use_of_percutaneous_autologous_bone_marrow_transplantation_in_nonunuion_avascular_necrosis_of_bone.pdf

  172. Vivek Avatar
    Vivek

    Hey Muthu,

    I am from Mumbai. If you need any help when you are here feel free to get in touch.
    Vivekvishwanathan at hotmail dot com.

  173. heena Avatar
    heena

    hi gys….
    I’m a 27 year old female diagnosed with AVN in oct2010,it was in right hip earlier but developd in left hip too.i have a baby by c- sec,when my baby was 5 months old i strated havin d pain,i hv consultd to 5 ortho surgeons,2 r not in favour of any surgery at this age but the other 2 surgeons dr mukhi at mulund and some dr at tata memorial suggest me drilling and bone graftin .do any1 knw about this procedure n how much it works,will this help to live normal life,i dnt understand in todays world whr med science is so much advance y doc dnt deal with the root cause which is artery its a blood supply issue,i totally agree with u Easa,i feel so frustrated i cnt carry baby in my arms i’ve restrictd all my activities.i want to live normal life like earlier….is surgery a gud option i have baby who needs mother 24hr…

  174. Abe Avatar
    Abe

    @ Easa & Heena;

    I have the same feeling from the first day on. The problem with the today’s medicine is the fact that it is a 15th century science equipped with chemistry, electronics and computer technology. Almost half of the people here are victims of the so called modern medicine (corticosteroid prescription), the others cause are trauma and sickle cell disease. Anyway there is nobody out there to work on the underlying cause which is a vascular problem. It is a chemical problem that the doctors want to resolve with a mechanical solution, which will not be resolved after a millennium with such an approach. This week I ordered a hip brace for my left leg with hope of some movements without crutches. I am a Persian and really would be appreciated those folks who live in the western hemisphere with access to better and enhanced solutions. And Heena I hope you will be able to carry your baby, because as a young wedded man I hope to play with my baby in future…

  175. Sabrina Avatar
    Sabrina

    Hi Heena,

    I was 23 when I had a free vascularized fibula bone graft to save my right him. It had ficat stage 3.
    It is 10 years later and the graft is holding up and all scans look great. The surgery was the best decision!

  176. Vivek Avatar
    Vivek

    Hi henna,

    I’m guessing that you are from mumbai also. I’m from chembur and I had bilateral AVN and I decided to go in for surgery. I had hip resurfacing done right hip in June and the left one now three months back. I’m 22. As far as I am concerned it’s worked out better than I expected. Touch wood.

    I had looked into core decompression and its many variants but even the doctors were not sure if there will be any success or even if it works how long it will last. Plus the long recovery time. Ultimately I did not want to waste further time and I just wanted to get back to my life.

    If or if not the graft will work for you depends on many things, how advanced your avn is, the cause of your avn etc etc. Even the doctors will tell you there is no guarantee it will work.

    I strongly suggest you mail dr Vijay Bose in chennai.
    http://www.hipresurfacingindia.com/index.php

    Vivekvishwanathan at hotmail dot com.
    Feel free to mail me in case you want any further details.

  177. heena Avatar
    heena

    hi guys.
    yes m from mumbai..thnx guys for clearing all my doubts,i feel much more relax to knw that there r much more young people who r having the same prob and r living normal life after surgery. i had negative feelin for any kind of surgery…newyz docs never mention hw advance is my avn…and dr.mukhi is one of best ortho surgeon in town and if he suggst for bone graft than may be its good for.i will still have to delay surgery atlst 1 mon or 2 as my baby is just 10 month old and may be i find some solution to treat the root cause meanwhile…

  178. Luke Avatar

    Someone led me to this video which could not be any more like my exact situation. The first time I have had a certain amount of hope with this. Not sure if this is much mdifferent than the marrow procedure I had heard about before since they say they are “cultivating” stem cells.

    http://adult-stem-cell-hip-surgery.com/flv/einhorn-fox/einhorn-fox.html

    http://adult-stem-cell-hip-surgery.com/news_052709.shtml

    Maybe some of the USA readers might be interested. Sounds like the Indians are already on this.

  179. Easa Nourouzee Avatar
    Easa Nourouzee

    Abe –

    You are right on about the doctors looking at this from a mechanical perspective. I would like to get some feedback from you on the hip brace. Since my last MRI in december I’ve been using crutches off and on to limit my walking. I’ve finally got an appointment set for an orthopedic specialist at the University of Washington next month. I’ve seen 3 other hip specialists and all they want to do is perform surgery.

    Where are you located? I’m in Seattle and haven’t had the best luck with doctors looking at it from a vascular stand point. That’s why I made the appointment with UW. They are more of a research based facility and may not have the tunnel vision that the rest of these doctors have. By the way I’m also persian.

  180. Abe Avatar
    Abe

    @ Easa

    Actually you are luckier than me since you can at least walk without crutches(but as you say with minor difficulties). The fact is that I can’t walk without crutches because of my left hip stage III and because of the long rest after my decompression surgery at home my left limbs extremities became very week. Eventually after some little progress(by electrical stimulation and swimming) I decided to walk by brace. It will be ready next week (because it needs the technician to adjust it to my leg & thigh sizes) and I will certainly inform you about the way it may change my life quality. As you asked about my location; it is Iran. I wish you a healthy life my fellow Persian AVNer.

  181. Joe Avatar
    Joe

    Hey Guys,

    Well tomorrow (Friday) I under go Core Decompression on my right knee. I just hope that it takes and blood begins flowing again to stimulate the regrowth of bone. I just don’t know what my down time is going to be. Then at a future date I have to look forward to THR on both sides as the femoral heads are to deteriorated with necrosis. The only good outcome (if you want to call it that) prsently is that my left knee has not reached an opearable stage but I do experiance pain in it.

  182. Muthu Avatar
    Muthu

    Gys,

    I had a talk with top orthopedics in Mumbai regarding Core Decompression and Ossron therapy,

    Here are the summarized points,
    1) Core Decompression alone does not alter the course of AVN progression, instead it only help in temporary pain reduction.
    2) 90% of the of AVNers will have to undergo joint replacement. Remaining 10% will do well without any treatment.
    3) For younger patients artificial joint will last only for 10 – 12 years and revision surgery will be complicated.
    4) Hip resurfacing is not an option for AVNer.
    5) There are no proven techniques to slow or stop the AVN progression.

    Discussion on Ossron Therapy,
    1) Developed in South Korea, Ossron therapy has shown 80% success result in averting joint replacement in Korean population.
    2) In India, this technique is not yet proven, so Doctor give me possibility of 50% success in averting joint replacement.
    3) This technique is more expensive then joint replacement.
    4) This technique will not worsen the existing AVN if not improve.
    5) Last but not least, “This technique is kind of Gambling”, no one knows the outcome of surgery after spending a huge amount.

    Well i decided to undergo Ossron surgery hoping that luck is on my side atleast this time…. :)

    My biopsy was done on 25th Jan and surgery will be done by March 1st week. Hopefully i’ll be back on my feets by June.

  183. Heena Avatar
    Heena

    Hi Muthu
    i just pray to God that everythng goes well and u get back on ur feet soon.
    If u cud pls help me with surgeons name,add,what will be the recovery time?and how much will be the total cost for the surgery?
    keep on updating about ur health..
    All the best….

  184. Muthu Avatar
    Muthu

    Hi Heena,
    I had a talk with orthopedic surgeon in Kokilaben dhirubai ambani hospital Mumbai, surgeon name is dr dinshaw pardiwala… Recovery peroid is around six months (if successful)… Surgery costs around Rs 5lacs… But no guarantee that it works…

    But this is the only option for me to save my dying hips… The technique is relatively new so who knows this would wrk better than expected…..:)

  185. Liz Avatar
    Liz

    You will be in our thoughts. What about a replacement? May last longer.

  186. Muthu Avatar
    Muthu

    As everyone knows, replacement won’t last longer and also has activity limitations…
    if biological cure works then there is no point in replacement but still further study is need to prove the biological cure…

  187. Joe Avatar
    Joe

    Hi everyone.

    I survived my surgery. It took longer then they told my uncle who was waiting for me and my ride. He was great though he and my aunt put up with me for the weekend. He took me home Monday around dinner time and a friend of mine who is not working is coming to stay with me and help me out and take care of my dog, my neighbor did it while I was away. Any how I had a Arthroscopy of the right knee, in addition Chondroplasty MFC and Core Decompression MFC & LFC. There is six incision points. Should make for a interesting conversation piece when it heals. At the present time my knee is the size of a Soccer Ball. I am in complete non weight baring and in an immobilizer brace. I have three different sets of exercises to do. Now I have t hope that the Decompression works if not I will just end up with a knee replacement sooner. One thing I have noticed since all my weight is now on my left leg that also has AVN the my knee is bothering me much more. Once the right is healed I am afraid the left will have reached the operative stage and if that is the case I am going to try and convince the Surgeon to replace it rather than Decompression, (of course if it does not take in the right it most likely won’t in the left)If the insurance will let that happen. I still have to have my hips replaced. So for right now pain meds and Ice are my best friends.

  188. Jack Avatar
    Jack

    Hey Everyone, Thanks for all you support and answers to my questions. I last time i wrote was 6 weeks after my Core Decompression and the news wasnt good. Is has been one month since that visit and i just got back from another check up. The new xray of my left hip show that the head has collapse and now its surgery time again. The pain isnt really any different than it was before the collapse and I’m still walking around with a nice limp. Also, the pain the my right hip has gotten worse and now we are looking at getting a core decompression done on that hip as well. The right hip was is not nearly as bad since we have caught it early. I right now shopping around for some second opinions about the total hip replacement. My ortho said that he doesnt believe that i am a canidate for a resurfacing since most of the head is affected and the inner bone may be too soft. Does anyone have any recommendation of type of replacements that are available for an active 23 yr old? I’m going this week for another MRI to see if we are going to do the core on the right first or the THR on the left. It should be an interesting couple of weeks… Hope all is well with you folks! stay positive!

  189. Vivek Avatar
    Vivek

    @jack

    Hi, let me tell you from experience that hip resurfacing is an excellent option. There are two implants available for hip resurfacing. BHR and BMHR. I have both.

    BHR is the smaller implant which is for a relatively preserved femoral head which might be the case in your right hip.

    The BMHR has a longer stem and is used in cases where a larger portion of the head is necrotic, but after a collapse I don’t think it is still an option. A metal on metal long stem implant will be a safe choice according to me as far as your left his is concerned.

    PS: Do consider resurfacing on the right hip.

    Good luck and Godspeed.

    @ Muthu. Extremely sorry could not meet you when you were here. Hope all is well with you.

  190. Muthu Avatar
    Muthu

    Hi All,

    Here is my another story…

    Few weeks back i had a mild pain in my left shoulder triggered with arm movement. Since i already have bilateral Hips AVN, i was bit worried about the shoulder pain. As time passed the shoulder pain became so intense i stopped using only left hand… But later i got a similar pain in my right shoulder also. I went to ortho and he did x-ray (Which was normal) and gave some pain killers.. I waited for another 2 week but pain never subsided, this was the time when i was more confirmed that AVN has affected my shoulders also (May be Stage I with normal radiograph)…..
    I was so depressed… Again i visited ortho after 2 weeks, he suspected shoulder AVN (which made things worst) and ordered an MRI…. 2day morning i got a MRI report, I was 90% sure about shoulder AVN but results were otherwise, “mild subacromial bursitis” (Thank god). But don’t know what caused shoulders bursitis. Hopefully it get resolves within couple of weeks…:)

  191. Muthu Avatar
    Muthu

    @Vivek
    Hey its ok.. We’ll meet in March when i come there for my next Hip surgery…:)

  192. Easa Nourouzee Avatar
    Easa Nourouzee

    Luke –

    Thank you for posting the links to the bone marrow asphirate concentrate procedure. I spoke to Tim Lammers about this and he said the surgery was performed on him over 3 years ago.

    Since surgery he has not experienced any pain in his hip. He no longer has any problem walking long distances. In addition, recent MRI scans have shown the dead spot lesions to be getting smaller.

    This is very good news for those of us in the USA. I spent sometime online and could not find any other doctors in the country who are performing this surgery.

    I sent my MRI scans to Dr. Einhorn and spoke with him last week. Since that video he has performed about 75 surgeries. He is stating that in all cases AVN has halted progression. In some of the cases like Tim Lammers….they are seeing a reduction in dead bone size as well. It is very apparent that the stem cells are in fact providing a regenerative affect.

    I have scheduled to have the surgery performed on March 29th. I will be flying out to Boston for the week. I will keep you all posted on the progress.

    This procedure has finally given me some hope. Einhorn specifically designed this procedure for the younger population affected by AVN. Finally something out there that will aim to improve the problem at its root rather than just cutting away at dead bone like most of these Orthos are so programmed to do.

  193. betty Avatar
    betty

    i have just been diagnosed with AVN in my left hip.i have not seen a specialist yet……i would like to know in plain english what to expect …
    i thank you in advance

    kind regards
    betty

  194. Sabrina Avatar
    Sabrina

    Hi Betty,

    How old are you and what stage do they say you are in. Is there a know cause for yours? I would be happy to tell you about my experience. I was diagnosed at the age of 23, right femoral head. Ficat stage 3. I turned down the hip replacement and opted for the trial free vascularized fibula bone graft (I was a soldier at a military training hospital). I have had great results!

    My personal email is FitMomInMaine at gmail dot com

    Warmly,
    Sabrina

  195. Muthu Avatar
    Muthu

    Hi All,

    Today i got a call from Mumbai and my hip surgery is scheduled on March 11th… My biopsy was done on Jan 25th in Mumbai for osteoblast cell culture and implant will be done March 11th. 6 weeks NWB and next 6 week PWB.

    Well i’m bit worried cos this is my first surgery and they are going to graft my hips with Iliac crest bone during implant.. And the sad part is, 24th March is my birthday and i’ll have to celebrate it on my recovery bed…. :(

    Thanks…

  196. Dr.Dinesh Avatar

    hi,
    iam here to offer you the recent most innovative but proved therapy for avascular necrosis and OCD ( CARTILAGE DEFECT)wherein we regenerate the bone and cartilage. thousand of patients across the globe have been benefitted ,
    please contact me at [email protected] for further details.regards Dr,Dinesh p

  197. scott Avatar
    scott

    Hi All,

    This website/blog/forum has been a godsend! I am so glad I came across.

    I’m 41 (almost 42) and about 6 months ago I was told I have AVN in both hips. My right hip is the one that is troubling me. The left one I have no pain in at all as yet. A couple of weeks ago I had a steroid injection into the hip to alleviate some of the pain (fluid, inflammation etc) and I also had what is called a Zoledcronic Acid Infusion. This is something that is given to people with osteoperosis and also people who have had chemotherapy that weakens the bones.

    Has anybody had the type of treatment? I would like to hear first hand of the successes and the failures of this procedure.

    Also I am a very active person. My running and tennis days are no longer happening for obvious reasons but I do weights at the gym and want to know if anybody else who has AVN found doing weights a good thing or a bad thing. My surgeon says keep doing it but be guided by pain. My physio says don’t do it at all but for my mental state, I need to keep doing it. What do you guys think?

    Thanks for reading my rather long winded msg everybody. I hope I hear from you soon.

    Regards,

    Scott (in Australia)

  198. Vivek Avatar
    Vivek

    Hey Scott,

    It is best to keep the weight bearing to the minimum. After being diagnosed with AVN most doctors would advice you to use a cane to take some weight off the affected joint so as to not aggravate the necrosis and preserve the good bone.

    In most cases even non weight bearing physio has proven useless if not harmful.

    I don’t know how your doc is OK with the weights, but anything that takes your mind of the wretched disease is great.

    In my opinion sitting down and doing weights shold be OK. As long as the femur does not have to deal with the added weight there should be no further complications.

    I am 22 and have had both my hips resurfaced.

  199. scott Avatar
    scott

    Hi Vivek,

    Thanks for your reply.

    I should have added that all the weights I do at the gym are either sitting down or laying on a bench. I don’t do any standing up at all. The only cardio I am doing is the stationary bike at the gym and am about to add swimming to my regime.

    Did you find Hip Resurfacing helped? I am off to see my surgeon tomorrow so I am hoping he can give me some good news. He has not advised me to use a cane or crutches at all.

    Scott

  200. Vivek Avatar
    Vivek

    Hey Scott,

    I tried non surgical options to deal with AVN for well over a year to no use. Then I took the call to go in for surgery and all through my one year of pain and restricted mobility I researched the best surgical option to deal with AVN. Hip resurfacing is the best there is. There are two kind of implants in hip resurfacing BHR and BMHR. I have both. It has been six months since my last surgery and I am not thinking much about my hips at all. I just go about my daily things as if having metal hips was totally normal. I just got back from a trek on Monday, so now you know how good resurfacing is.

    Anyway, what I am saying is that if you are being advised surgery, hip resurfacing is the way to go. I have read up a lot on the other procedures and the results aren’t consistent at all. Many a time it just postpones the need for surgery.

    Do you know the cause for your AVN? What stage are you at?`

  201. scott Avatar
    scott

    Hi Vivek,

    We have no idea what the cause is and I am at stage 3.

    Scott

  202. Ron Avatar
    Ron

    Hi All,
    I am 34 years old and last August I was diagnosed with AVN in my right hip. It had already progressed far enough where resurfacing and core decompression were no longer options. Luckily my local Orthopedic recommended a Free Vascular Fibular Graft over a hip replacement. They basically drill out the femoral neck and head and insert a graft from your fibula (They took about 5 inches of the entire fibula) and then they attach new blood vessels from the graft to vessels on your hip. There is a long recovery period. I had the operation about 4 months ago and I am now using only one crutch. But after 6 months you are back to full weight bearing and after a year possibly two you are as good as new. The only limitations are that they recommend you do not do any high impact sports. The good news is that if the surgery is a success you do not have to worry about having a hip replacement down the road.

  203. Sabrina Avatar
    Sabrina

    Hi Ron,

    So glad to hear of your success with the FVFBG…I too had mine on the right in 2001. I am 32 now and doing pretty well. I have achy days and do feel limited in certain ways..but overall a success as far as holding off a hip replacement.

    I definitely stay away from impact stuff….
    One struggle I have now is my kids. The are 1, 3 and 5 now and much more active. My limitations are much more prominent now that I can’t keep up with them as well and that makes me sad. Hurts to hear, “Mommy! Run with me!”.

  204. anil Avatar
    anil

    hi friends,
    last mont i was dignosed AVN – II stage both hips.my doctor suggested me some medication with 1 and half month bed rest,could it realy work.After dignosting AVN how much days could i walk on my leg without using crunthes.and what is the right time to do surgical treatments.

  205. wekab Avatar
    wekab

    Hello my fellow avners~
    I have not been on this site since my last surgery which I am still healing from. I had bilateral hip replacement with two different stems. The 2nd surgery was way harder than the 1st but it had to be done. I’m still in physical therapy trying to regain all or part of my strenght. I am taking it day by day. I recently found out that I have a little osteonecrosis in my right knee. I want to nip this in the bud. Not painful like my hips were, but I notice the difference. Any suggestions??? Be encouraged!!! I’m trying to :)

  206. Maggie Avatar
    Maggie

    So grateful I’ve found this forum!

    I’m recently 21 years old, and was diagnosed with AVN last fall. When I was seventeen, I was diagnosed with langerhans cell histiocytosis, which is an odd mix of autoimmune disease and cancer where white blood cells pile up in my body and act like tumors and kill my bones and all sorts of fun things. I was put on chemo for a year, as well as prednisone, which in turn caused my AVN. The main focus of mine is the femoral head of both hips, although I have a little in my knees as well which has caused me a little pain, and some in my shoulders which has never bothered me a single bit.

    I’ve decided to do core decompression surgery on my hips and possibly my knees as well. My ortho surgeon (at Seattle Children’s Hospital) told my that I had some moderate damage, but it was caught early enough that if we had surgery now I wouldn’t have as much a risk of collapse.

    What I can’t seem to find on the web (other than here) is what to expect after the surgery. With both hips being done, and possibly my knees at the same time, what amount of pain should I expect? What about mobility? They said they would give me a wheelchair, but will I be able to move at all? Will I be able to get from the couch to the wheelchair to the bathroom and back, or should I expect to be totally bedridden for three weeks? Heck, will I be able to even bend my knees? Walk?

    This will be my seventh surgery, so one would think I wouldn’t be worried at all. But all my other ones were well above my waist (tonsillectomy, putting in and taking out a mediport, removing tumors from my skull, getting my wisdom teeth pulled, and fixing a deviated septum) so mobility was never an issue, I could always get around.

    I’m not letting myself worry about the after effects regarding how well this will work; I’m confident in my hospital with it’s pain clinic (which includes homeopathic remedies as well as more “modern” ones, PT, and doctors that I really like). But if someone could sort of walk me through what to expect for the first month or so afterward, I would greatly, greatly appreciate it.

    Thanks,

    Maggie

  207. Moe Avatar
    Moe

    Hi Maggie,
    There are some posts above (under the name of “Gys”) that have great info about recovery from bilateral core decompression. I only had my left hip done (11/22/10) and the recovery was 6 weeks on crutches. Starting on the 5th week, my doc said I could put almost full weight on it – using the crutches more for balance than weight-bearing. Pain was really only present during the 1st 4 days after surgery and wasn’t all that bad – after that it was just a few days of pain where they made the incision. I was able to begin SOME weight-bearing a little earlier than the 6 week period because the doc injected an artificial bone graft material to back-fill the drilled area. This promotes bone growth, and is porous to allow blood to return to the area – but, it is also a filling which provides some stabilty to prevent fracture during the recovery period. It fully hardens within a few hours after the surgery. Be sure to ask your doc about some sort of back-filling technique. Hope all goes well for you!

    Take care
    -Moe

  208. Maggie Avatar
    Maggie

    Thanks Moe! Your answer helped, and I looked up Gys’s comments. He had a checklist a while back and I managed to tick off all of them (like looking my doctor in the eye and making sure he had done the surgery before). Still a little nervous, but having this group of people helps. I will ask about the bone-graft material and see exactly what he wants to do in my surgery.

  209. Gys Avatar
    Gys

    Hi Maggie:

    Glad you found my postings useful. As you have read in this blog, the overall experiences varies from person to person, but is nice to know there are so many of us that can help each other in a way or another.

    I think that from your name I can assume you’re a female, and I know that is not as easy to assume from my nickname. :-)
    Anyway sometimes surgeons will be very careful when suggesting surgical options to female patients with AVN, specially those that they consider to be in ‘child-bearing age’. I fall under that category so that’s why my surgeon really encouraged core decompression, since the AVN was in an early stage and this is the least invasive procedure, which rarely cures, but most often deals with chronic pain and delays more invasive surgical procedures. I think you may have read many posts here regarding resurfacing, which seems to take care of AVN in early stages without going for a full hip replacement. This is procedure I’m hoping to have in the future, but for now I’m pretty much pain free.

    After the core decompression, you may have some pain but mostly due to the bone drilling. If you currently have any noticeable pain in your hips, thighs, or groin, you will notice almost immediate relief from that type of pain, but as you can imagine, drilling into hard bone is not something our bodies take for granted so you may feel some pain, and doctors will certainly give you prescriptions accordingly. I personally didn’t have any pain at all for over 12 hours, but that is also because I did not feel my legs at all, by the time I felt them I had to be trained by the inpatient physical therapist in the proper way to use the crutches according to the doctor’s orders and I was discharged right after that, and just took painkillers as needed for 2 or 3 days at home.

    I am now walking fine and have lost 32 lbs. which has certainly helped relieve pressure/pain in the hip area. My AVN was caused from long term used of prednisone, so at least I know what caused it unlike some fellow AVNers who are still trying to figure out why they have circulation issues in their femoral heads or knees.

    You can e-mail me at [email protected] if you have more specific questions about the bilateral core decompression procedure (i.e: pre-op,/post-op instructions, physical therapy, home care, anesthesia options and side effects)

    I wish you the best of luck in your upcoming procedure.

    Gys

  210. Maggie Avatar
    Maggie

    Gys, thank you so much! I realized after reading some posts regarding you possibly having children that you were probably a girl, but it was already after I said ‘he.’ Sorry!

    Thanks for the answers to my question, I don’t know why I’m so nervous about this one. My boyfriend just recently was hired full time, and though he’ll be literally ten minutes walk away from me, I’m really worried about getting around my apartment during the day. But knowing I won’t be in pain that long really helps.

    I’ve already been told that I’m going to have to have a c-section when I want kids because my cancer basically ate through my L2 vertebra and if I tried to push out a child, it would probably break my back. So I just assume that in ten years when I want a kid, I can expect to be on bedrest for at least 4 months and have a C-section :-)

    Prednisone is fun, isn’t it? That’s what did my hips in, too. My onc has said that I will never be on steroids again, and that if any doctor ever tries to put me on them, I pretty much have full permission to say “oh, hell no!”

    I definitely do have some major pain in my hips and lower back now, which is a main reason why I’m having the surgery. I’m also going to be staying overnight in the hospital, so I will probably be able to meet with someone from the pain clinic or a PT to help me hobble around on the crutches when I can’t use the wheelchair.

    I’ll send you an email so I don’t lose yours. I really, really, really appreciate your answers. You’re calmed some nerves.

  211. phil Avatar
    phil

    not trying to be a bad guy when i first got on lukes blog there was not half of you on here avn stinks it is now in my knees anyone have a new cure or help??

  212. Ron Avatar
    Ron

    Sabrina,
    I am glad to hear that your FVFG has held up well over the last 10 years and your are doing well. I just had my first child 4 weeks before my surgery. She was one of the reasons I was willing to travel and get this surgery and not just a hip replacement. I wanted the “hope” that I would be able to play with her when she got older. I knew I would not be able to do everything I wanted but that would be better than being on my second hip replacement when she was 15.

  213. Vivek Avatar
    Vivek

    Hey Maggie,

    My story is strikingly similar to yours. Cancer , prednisone, AVN, Luke’s Blog. I have been here for a while now.

    My hips were well beyond the core decompression stage so I had to go in for resurfacing.

    I am 22 and have had both my hips resurfaced. I am doing good so far . I am now able to sit on the floor with back support for a little while, then again its been only six months from my second hip surgery.

    The thing that is different for people who have undergone chemo is that the chemo drugs cause a lot of tissue wastage and muscle weakness. So it is very important to not rush the recovery process. We need to keep the PT going for a while after the surgery and give our body the time it need to regain the strength.You might find yourself racing against the usually prescribed recovery time, but don’t bother. Take your time. Soon enough you will be back to normal life and posting here telling other ANN-ers to take it easy.

    @wekab,
    It is great to know you are doing well.

    There are a couple of posts here about knee pain after hip surgeries. I am no exception. My knee kills me as well, but what I have learnt from talking to doctors and my PT trainer is that we fire our knees back when we walk(make our legs absolutely straight pushing the knee cap as far behind as possible). I don’t know if this is the case with you guys but I was doing it. So now I make a concious effort towards keeping the knee at a neutral position when I walk.

    Also cutting down on excess weight is crucial. I have put on a lot of weight after steroids and am struggling with loosing any. Any suggestions GYS?

    All the best to all of you guys.

  214. Maggie Avatar
    Maggie

    Vivek—

    Thanks for the hint, it’s like you know me already, knowing that I’m going to want to push myself harder than I should. I’ve been fairly sick for the past almost four years since being diagnosed with LCH, and it slowed me down a lot. I had been feeling better before I moved out to Seattle, where I got progressively worse with my hip AVN. I may not like being stuck on the couch for a month, but luckily my boyfriend will not let me push myself.

    I have a question that’s kind of weird. When any of you had your surgeries, could you get around your home afterward? Could you physically get off the couch without others’ assistance to go to the bathroom or the bedroom? My boyfriend will be working and I’m a little afraid of being stuck and unable to move.

    Gys said that she couldn’t feel her legs for about 12 hours after she first had her decompression. Is this normal? Should I anticipate not moving from my hospital bed the entire first day I’m there?

    I gained about 15 pounds on prednisone, but luckily I have managed to lose the weight since then, mostly because I lost the voracious appetite I got with the steroids. I’d also recommend doing a yoga class, since it’s a gentle exercise if you have any pain, really, and learning yogic techniques can help you improve your digestive tract and decisions.

    Thanks again, everyone. I really, really appreciate this blog.

  215. Gys Avatar
    Gys

    Hi Everyone!

    @Maggie & @Vivek

    Maggie, you should be able to move around your house, and go to the bathroom on your own. I did the day after the surgery and I moved on my own at home. I would recommend 2 things: silk sheets or silk pajamas, as it makes it easier to get off the bed the first few days, specially if you have a high bed. You just need to slide off ;-) Another thing, which I didn’t use but it would have helped, is a raised toilet seat. You can get those at a Walgreens, CVS or similar place, even Walmart I think. Those are usually recommended for hip replacement, and not for decompression or resurfacings as far as I can tell from the reading I’ve done. But I found out that the first few days I was a bit weak, and it is amazing how low the toilets in my house are. One thing that helped me is that we have the toilet in a separate area, what the builder calls a ‘water closet’ so I would let go of my crutches, and hold on to both sides of the wall and lower myself. (That was possible because this was an enclosed area)
    I was able to stand on my own and shower (without crutches) the next day. My doctor advised me to avoid standing without crutches for too long for at least 4 weeks, though the full time with crutches was 6 weeks.

    The reason I couldn’t feel my legs is because of the spinal anesthesia. I guess the after effects vary from person to person. I had enough anesthesia to allow the doctor to perform the procedure on both sides. In the hospital they put some pump stuff to keep blood flowing on my legs so I wouldn’t get blood clots while I couldn’t walk. Something else I wanted to mention is the anesthesia side effects. I’ve never had nausea before with general anesthesia, but I guess spinal is know for causing nausea, and I was given a patch to put behind my ear (I believe it was scopalamine, or some drug with close to that name). So I wore it the night before the surgery per doctor orders and did fine, then I took it when I got home. Oh boy! what a mistake that was! I was throwing-up the same night and of course I had to ‘slide off’ the bed on my own since my husband was totally asleep. I couldn’t throw-up in the toilet since it was too low, so I went to the bathroom sink, and thankfully I had a chair by it, and just proceeded to take care of my problem. And you can be sure after that I put another patch on and wore it as long as it was prescribed. And my husband didn’t even notice I left the bed with crutches and that I was throwing up. Poor guy was too tired! (We drove 2 hours to my surgery, and then he stayed in a hotel and drove me back 2 hours).

    There is also certain things that are hard to do while using 2 crutches, like: cooking, fixing your bed, doing dishes,etc. When it came to cooking, I had an assortment of homemade meals that were in microwave safe dishes so I just had to manage to get out of the fridge and into the microwave while I leaned on the crutches. I didn’t do dishes, and I gave up on fixing the bed. I did the best I could and I my husband took care of it when he got home.

    Vivek, I know what you mean about prednisone and weight gain. For some of us it is harder to lose the weight. I gained 40 lbs on prednisone. As it is I’m very sensitive to simple carbs, so I gain weight easily by eating pasta and rice everyday. I tell you I tried bootcamp, personal training, and I just managed to gain muscle mass and lose a few inches but the fat really insisted on staying. Since I have a few other health conditions I didn’t want to risk any diet without medical supervision. So that is what I did. I’ve lost 30 lbs since October in a medically supervised diet, which is very low calorie (VLCD), and now I’m easing into a regular diet, but adjusting the distribution of macronutrients (protein, carbohydrates, fats, etc) Basically I used to consume more carbohydrates (percentage wise) than any other macronutrients. So even though I had fruits, veggies and legumes besides just pasta, rice and breads, I wasn’t intaking enough protein to help the muscles burn fat. This takes a lot of adjustment and it is also different depending on your metabolism or how hard you work out, etc. that is why I am being supervised medically (i.e.: my blood is drawn monthly and my diet is adjusted based on that, I get EKGs, blood pressure monitored, etc)

    Vivek you’re also totally right about being patient with the recovery period. I see each day without pain as a small victory, though I know my journey with AVN is not over, I do my best to strenghten the muscles around my legs and core and find activities that make me feel good. For example I was using a stationary bicycle within 3 weeks of surgery (after the doctor cleared me), so I wouldn’t feel like a slob. And afterwards I got a spinning bike since I was a bit scared of hitting the roads in a bicycle since I had risk of fracture within 3-6 months of the surgery. Then I just embraced my fears and got a road bike and haven’t fallen off it yet, despite the fact that I’m still learning to use the clipless pedals so I don’t end up in the asphalt :-)

    Wish you guys the best! This is a tough condition to deal with, no matter the age, but the important thing is to fight it and not let it define you. Just let it make you stronger and more positive. When I feel like complaining about it, I happen to see somebody in the news or in person that can’t walk, or does not have legs, and in my case that is enough for me to shut up and keep plowing forward with recovery.

  216. wekab Avatar
    wekab

    Hi my fellow AVNer’s~
    There’s a lot of new people on here and I couldn’t read all of the post due to time but I did read Maggie’s, Gys and my friend Vivek that really helped me decide to get the surgery. Actually I needed it because my femur just collapsed. I have sickle cell and that’s how I got bilateral ANV in the hips. The joy. Although I had both surgeries and I am feeling so much better, this is a lifelong journey of getting better and taking care of myself.
    My 1st surgery back in Nov 2010~ I had the epidural and was so releived that I can actually walk. Took some time to get rid of the headache but I was walking 1/2 decent. I had the 2nd surgery in Jan 2011 and it was crazy pain. I guess that’s because I opted for no epidural. My left leg lenght is a little bit longer b/c my surgeren tried to put the same stem in but it kept curving towards the bone so he had to use a longer stem with a little hook. He said it’s not going to effect me and said he couldn’t tell the difference when I worked the runway (hallway of his office lol) The left side is taking longer to heal but hey I had to joint surgeries with two months.
    My hematologist wants me to wear a little orthodic so I’ll be doing that b/c he doesn’t want me to have back pain. I have full sensation in my left leg but the right side is still “wakening”. I guess that’s due to the epidural.
    I can’t complain, I CAN WALK but I’m working on getting stronger. I’m taking it one day at a time. I do have a raised toilet seat and like Gys said, I didn’t realize how low toliet seats are. I can stop using my elevated seat next month. Still doing my therapy and watching out for my knees. I’m walking cautiously but I guess I’ll be doing that for the next year or so. I’m thankful that I’m healing :)

  217. anil Avatar
    anil

    hi friend,

    can anybody tell me what is stem cell therapy,is their anybody who tried this new technology to treat AVN at early stage.if yes please share experience and result.

  218. Muthu Avatar
    Muthu

    hi anil,
    Stem cell threapy is stil under experimental stage and is performed only in selected centers… I have bilateral hip avn stage ll and underwent another kind of cell threapy called ‘autologous osteoblast implant’ (which is ofcourse in experimental stage) on March 11th in mumbai… Currently i’m under rehab in mumbai hospital… This is relatively new procedure and doctors have given only 50% chances of success.. If u need more info on this procedure then google ‘Dr. Seol Jung Kim osteoblast culture’…

    -Muthu

  219. Heena Avatar
    Heena

    Hi every1…
    After a long break i got time to post my recent cond as i was busy with my sis’s weddin…On saturday i had consultd to a orthoped
    Dr.Gauresh Palekar,he viewd my latest x-ray and told me that i have avn on right hip stage III and stageIIA on left.He suggest me THR for right hip and stem cell therpy for left.But i m concern that will i be able to run and play with my baby and lead a normal life after THR.Is der anyone who had THR and living a healthy life witnout any pain.Also i would like to ask do avn progress to stage III in just 7months is it possible and i still can walk quite well..

  220. Vivek Avatar
    Vivek

    @ Wekab- It is great to know you are doing better. Nice to have you back.

    @ GYS. The silk pajamas bit is the smartest thing on this forum. I think they should hand those out at the hospital after the surgery.

    @ Muthu- A recovery bed post shows you are already doing better. I wish you a speedy recovery.

    @ Heena – You should consider hip resurfacing. I have got both my hips resurfaced and I can tell you that after hip resurfacing your life will be just about normal. You can jump and dance and play with your kids all you like. No restrictions. You can read my earlier posts for more on my story.

    There is so much info in the posts here. It is much better and more informative than any medical journal out there.
    Real life practical solutions and suggestions. Most of us don’t even know each others names, but we are able to understand each other perfectly. Its amazing.
    I have drawn a lot of strength from the posts here.

    Big thank you.

  221. Heena Avatar
    Heena

    @Vivek-But my surgeons says dat hip resurfacing will not work in my case as it has progressd to stageIII,will u pls tell me at what stage did u had hip resurfacing……

  222. Ron Avatar
    Ron

    @ Heena – I was stage III and was able to get a FVFG (free vascular fibular graft). It is a little more complicated than a THR but it corrects the underlying issue of no blood flow to the femoral neck and head and it uses your own body parts. Unlike a THR you need have to do it over again in 15 or so years. Just something to think about especially if you have young ones like myself.

  223. Ron Avatar
    Ron

    Sorry should read ” Unlike a THR you most likely will not have to do it over again in 15 or so years.”

  224. Heena Avatar
    Heena

    Thats ok Ron.Do FVFG means bone drilling and grafting.i personally dont feel like having THR.I will surely discuss this option with my doc.

  225. Vivek Avatar
    Vivek

    @ Heena

    I had both my hips resurfaced when it was stage III or worse.
    Surgeons who don’t practise hip resurfacing often advice against it.
    Try to meet DR Kaushal Malhan at the mulund fortis hospital. I have consulted him before and he will put things into perspective for you.

    Even if your hips are really deformed which is quite unlikely because you said you can walk without much difficulty there is an implant called the BMHR which can be used.
    All the best.

  226. amit Avatar
    amit

    hi ,
    good to see discussing and encouraging each other.me 2 suffering from AVN HAD UNDERGONE stem cell procedure . till date i can feel almost 75 percent better. and xray showing positive changes. this i atleast better than those implants , my relative had to get it done thrice.

  227. Jules Avatar
    Jules

    Oh so Hi all, I am the mother of a just turned 16yo boy who after a traumatic fall in Aug 2010, has developed AVN….he startd out just with the dislocation and fracture of the growth plate, then when that failed due to AVN went onto ORIF with 6 metal screws, 3 of which had to be removed as they were getting to the joint space from subcapitawl collaspe. Since he is 16 we were told no TJR but not giving any other options but to wait for the bone to heal and “maybe he will make it to 30 and then get TJR”. I have done exhaustive research and spoke to doctors, really some actually spoke to me, but mostly their staff, and have many who want to give an opinion. I did find the Duke site and was very excited to see that there was an alternative out there for someone as young as my son. I sent the doctors well Dr. Ruch at Duke all of my kiddos stuff and within 2 days I got a reply that he would be a candidate for the procedure…..Now I am not sure what to do. We live in washington state and no one here does anything but TJR or compressions. My son has been on crutches since 9/08/10!!! He has not walked full weight in over 6 months except for a small gap of time after his first surgery. No way for a kid to live. The bone has decreased in size and even I with my untrained eye can see the difference between his good hip and the dead hip. So anyone out there wanna put your two cents in with us?? We have 3 appts. in teh next 10 days with different orthopods, one is a PAO specialist, one a plain orthopod reccommended by a neuro-spinne specialist and the third is a pediatric hip guy. So after those visits, we may go to UCLA orthopedics, they agreed after receiving records to take him on but did not say how or what they would do. And finally 2 hip guys in San Diego, one at Rady Children and one at Scripps. I am trying to get all the opions I can get before making a decision for my son that will effect his life forever. He just wants to walk again and if the FVFG operation will do that,well then that is prolly where we are headed. Luke, where did you find success and failure rates? I think I would like to read that, and you are right, its the same info out there over and over again.

    Well, sorry for the rambling and thanks for listening…please respond

    Julia

  228. Jules Avatar
    Jules

    @Ron,
    Where did you ahve your FCFG done? I am so glad to hear you are bette. I am hoping the procedure will help my 16yo….not sure of the stage but I bet he is a solid 2- or a 3!

  229. Muthu Avatar
    Muthu

    hi amit,
    When was ur surgery done and wat kind of stem cell threapy nd where?

    -Muthu

  230. Ron Avatar
    Ron

    @ Jules,
    I am so sorry to hear about your son. I had my surgery done in Durham, NC and my surgeon was Dr. Julian “Mack” Aldridge. You can read his bio at http://www.triangleortho.com. He was assistant professor at Duke before leaving to private practice. He trained under Dr. Urbaniak who invented this surgery. After you are approved, you set up a surgery date, for Dr. Aldridge it usually is a Tuesday. You meet with him on Monday at his office, walk across the street to the hospital and take care of all of your pre-op tests. Early Tuesday morning he performs the surgery which takes about 4 hours. You stay in the hospital until Friday and then you are released. It is ok to fly when you are released. Your post-op appointments and x-rays can be with a local orthopedic and you just send Dr. Aldridge copies. He will review them to make sure everything is going ok. If you have any questions you can email me [email protected].

  231. David Avatar
    David

    Hello everyone.
    Well I had the core decompression on my left hip on Oct 16th, spent 6 weeks on crutches and now am in worse pain then ever. My back is seized up because of the limp in my walk. I still work 12 hours per day, but am in a lot of pain. Went back to my doctor yesterday and had another x-ray, which showed that the deterioration had progressed a little.
    He keeps telling me that the only other option is THR and to go home and take pain pills and it still may “stabilize” over time.
    Well, I work everyday and cannot take pain pills, so I am trying to get by on Tylenol and heat packs for my back.
    I think I am just going to go ahead and get the THR and be done with it. I am only 40 years old, but I think I will just take a chance on technology over the next 15 years helping me not to have it re-done.
    I cannot think of any alternatives and cannot live with this pain anymore.
    Advice?? Good move or bad move??
    Thanks for listening…
    David

  232. Easa Nourouzee Avatar
    Easa Nourouzee

    Jules –

    I’m so sorry to hear about your 16 year old son. I was diagnosed with AVN in January of 2010 and I too live in Washington state and have been on crutches off and on since March 2010. I’m 29 and it’s been an extremely difficult year for me but there is now hope thanks to Luke and this blog.

    I have a quarter size dead spot on my right femoral head. The doctors don’t know what it was caused by but I have a strong suspicion it was soccer related. I consulted Dr. Crutcher at Sweedish, Gregush at Evergeen, Bruckner at Overlake, and another at UW. I was so frustrated with their recommendations because they were treating me like I was a 45 year old with a cracked bone. They suggested core decompression but I’m completely against it. Do the research before you take any doctor up on surgery. Core decompression has no proven benefit other than to decrease pain if even that. It acutally makes you more susceptible to a THR by making your bone weaker.

    Fortunately, I’m only stage 2 with no sign of crack or collapse. After a 3 month period of crutch use I went back to walking and the pain came back immediately. My most recent MRI in december showed the dead spot getting worse so I put myself back on the crutches right after. I continued to do my research and visit this blog once a week.

    Then Luke posted this sometime this January:
    http://adult-stem-cell-hip-surgery.com/flv/einhorn-fox/einhorn-fox.html

    http://adult-stem-cell-hip-surgery.com/index.shtml

    The first link is the video describing a 2 hour procedure involving stem cell transplant. 12 ounces of bone marrow are extracted from your pelvis and then 1 ounce of concentrated stem cells is used from that to be inserted to the dead spot.

    I contacted Dr. Einhorn and provided him with my MRIs. He called me within 2 days and said I was a great candidate for the surgery. I’m scheduled to fly out to Boston next Saturday and will have the surgery performed on Tuesday.

    It’s very sad for me to hear your story as I dealt with extreme ups and downs this year. I was so active before this happened and now my life has been on hold. To hear the fact that your 16 year old son has to deal with this makes me want to cry. I can’t even imagine what he is going through.

    I found this blog to be very uplifting as people provided their experiences and words of encouragement. Seeing as we live in the same state I encourage you to give me a call if you have any questions about my experiences or even if your son needs someone to talk to.

    Easa
    206-372-1787

  233. Easa Nourouzee Avatar
    Easa Nourouzee

    Amit –

    Can you provide us all with details on your stem cell procedure. I’m undergoing a stem cell procedure in Boston at the end of the month for AVN stage 2 in my right femoral head.

    I’ve spoken to patients who have undergone this surgery and are doing very well now.

    Can you provide feedback on your AVN, when and where you had the stem cell treatment, and how you are doing now?

    Thanks

  234. Easa Nourouzee Avatar
    Easa Nourouzee

    Jules –

    I forgot to mention in my email above that the stem cell procedure results are even more promising for those who contracted AVN from trauma or fracture. The doctor explained to me that those with cases of AVN brought on by alcohol or steroid use saw a halt in the progression of the disease but didn’t see as much of a regenerative effect that those with AVN trauma/fracture experienced.

    Part of that is because those who have abused alcohol or steroids have weaker stem cells. In turn the stem cells are not as effective in rehealing the bone. One of their most recent cases of trauma was a hockey player who dislocated his hip and then developed AVN. He went in for the stem cell transplant and one year later his MRI shows no sign of AVN! How amazing would that be to see it completely disappear.

  235. Maggie Avatar
    Maggie

    David, the only thing I can say is that you should not be in pain that much, before or after surgery. If you are in worse pain, it may not stabilize. I would get another opinion.

  236. Sophie Avatar
    Sophie

    So many strong and inspiring people on this blog. Don’t we wish we could all meet and share?

    I still remain the youngest weighing in at being diagnosed at 11 and now 18.

    Gods blessings to you all. xo

  237. amit Avatar
    amit

    hi ,
    i underwent surgery in INDIA bhatia hospital , where they cultured my bone marrow nd injected it back . iam feeling better know i had done repeat MRI , SHOWING new one formation and my pain is much better .
    hopefully ill not need HIP REPLACEMENT .
    CHEEREEEEEE
    S

  238. amit Avatar
    amit

    EASA, WHERE YOU GOT OPERATED …….. HOW R U NW

  239. anil Avatar
    anil

    @amit
    hi,at which stage u underwent surgery and what is recovery period.

    @ muthu,
    hi,hope u r doing well,what is the recovery period in ur case and what is the cost involved in this procedure(stem cell therapy).

  240. Muthu Avatar
    Muthu

    @anil
    Mine is not stem cell threapy… In stem cell threapy the collected stem cells are injected into hip immediately but in my case the collected cells are seperated into osteoblast (bone forming cells) and cultured in lab for 6weeks… The count of these cells are increased to 48million and then injected into hips during core decompression procedure….. This threapy is more expensive than stem cell and hip resurfacing… It costs around 5lacs… The success rate in korea is 80% but in India its not known…. This surgery is done only for stage l & ll hips….

  241. Muthu Avatar
    Muthu

    @anil
    Recovery period, 6weeks non weight bearing, next 6weeks partial weight bearing and after 3months we can go back to normal life….

  242. Brad and Kim Richardson Avatar
    Brad and Kim Richardson

    Hello, All – our son (13 y/o) dislocated his hip in August 2010 (Jules, your son’s story hits so close to our hearts) during middle school football practice. His hip was out for 5.5 hours (1.5 ambulance/transport, 4 in ER). A piece of the acetablum broke off and needed to be surgically replaced. All was progressing very well until the MRI was ordered (precaution because Blake wants to play baseball). On March 2 we learned he has osteonecrosis over 30% of his left femoral head, no pain, no limit in range of motion. We have been agressively researching options, as you all know there is no easy protical/answer. We have sent Blake’s info to Dr. Mont (Baltimore) and Dr. Einhorn, we have a conference call scheduled with Dr. E tomorrow (march 23). We are cautiously optimistic and VERY confused about trying to make the correct decision. Blake’s doctor has suggested that Blake use crutches for the next 1-2 years and let the bone regrow on it’s own – that feels very scary to us and an eternity to Blake. Easa, we would love to chat with you further about your findings re stem cell and Dr. E. Jules, we too are originally from WA state (Maple Valley), you are the first person we have found in our shoes. Please feel free to reach out to us: 904. 206. 9803 (we live in FL)

  243. amit Avatar
    amit

    @ brad and kim , have u been advised stem cells

  244. amit Avatar
    amit

    @ muthu === where u got operated ? i got operated by dr gauresh , stage II A AND B , MRI SHOWING BONE REGENERATION NOW

  245. Anil Avatar
    Anil

    Hi amit,i m dignosed AVN stage II feb this year,when u get dignosed and when u underwent stem cell surgery.

  246. Brad and Kim Richardson Avatar
    Brad and Kim Richardson

    Hello, Amit – yes, thank you. we had a conference call with Dr. Einhorn yesterday. He seems like a terrific person! Our concern is that Dr. Einhorn would have to go through the growth plate.

  247. Muthu Avatar
    Muthu

    @amit,
    I got operated on 11th of this month by dr dinhswa pardiwala mumbai…. As of now i have no pain in my hips but need to wait atleast 6month for results…. What was ur actual surgery procedure.? Was it a stem cell threapy or ossron threapy?

  248. Brad and Kim Avatar
    Brad and Kim

    @ Jules or Julie – our son is 13 with avn due to trauma, we can relate to your son’s story. I understand your are very busy reaching out to specialist…we are too. Have you been in touch with Dr. Harry Kim from Texas Scottish Rite Hospital for Children – he specializes in pediatric hip disorders. He was very responsive with us, I just sent Blake’s images today so we will see what he has to say. If you want to chat… 904.206.9603.

  249. julia Avatar
    julia

    @ Brad and Kim
    Thank you for letting me know the name of the doctor and responding to my post. It really sucks to have a child with this condition and yours is even younger than mine. I had not checked out Dr. Kim but I do have his web page up and so I will look into it. Can you tell anything about him and what you think he might be able to do

    We had an appt. with a Peri Acetabular Osteotomy specialist yesterday and it went horrible. Jarrod’s hip is fried……there is almost no femur ball left and what is there most of it has slipped off the femur neck and to the back and while there is a small amount on the neck what is there is flat…he basically has no hip ball! The doctor said he would not do a replacement as he is too young but a fusion would be the way to go, I am totally against this but he says it may be the only thing to get him up again. BS I say…..we are going to go to Scripps in San Diego, Rady Childrens Hosp in San diego and UCLA to get more opinions.

    I did send my kiddos stuff to Duke U to a Dr. Ruch and got a call that he was a candidate for the fibula greafting procedure. I was thrilled to hear this and though that it is just the solution that we needed. Now that I have talked with two different doctors they have pooh poohed the idea. The do not think the procedure is a good one and that we have a fibula bone for a reason and weren’t thrilled with the idea of taking 5″ out, plus neither doctor felt that Jarrod was a vialble candidate as he has not femur head and that is the one thing that is needed for this procedure. So now I am even more lost and more confused and really don’t know what to do. I am so frustrated and even though I have several doctors lined up I do not know if they will have a solution to help.

    Some say hip replacement but not a great choice for the age of him, the other says a fusion but he hasn’t done them for over 5 years due to TJR but feels that this is his best shot to get him to an age where he can convert to a new hip. Pne also says he WILL NOT do a new hip period at this age. So what the hell do I do. I really would love to hear what research you have done and what solutions have been suggested to your son given that he is 3 years younger than mine. Also, I don’t know what stage your son is at but Jarrod has a “severe deformity” per the radiologist so I am guessing he is stage 4.

    It happened so fast from a healthy hip to a almost non hip that I sometimes still can’t believe it. How and why are questions I try to keep out of my head or I will drive myself insane!! My email is [email protected] and number is 360.697.2599….I think we should talk for sure.

    Anyone else on this thread feel free to comment. Guys let me know how your son is doing and what the doc in Texas says. I will call there on Monday and do the same, send all the info and images. Can’t hurt right? Have you checked out Salt Lake City Childrens? I was told by the doc yesterday that he thinks they are the best in the country…but I am beginning to understand that all these docs think one hospital or another or a different doc is the best:)

    Looking forward to hearing from you Brad and Kim…….

    Julia

  250. julia Avatar
    julia

    Ok so for all the folks who have done FVFG I have some questions for ya. Where exactly do they put the graft, is it the neck or the ball? How has your lower leg been since the removal of the bone? What stage were you in when you go the graft? How long was the surgery and how painful? How are you today? Walking, no limp, free of pain, NORMAL?

    I ask you all this as my 16yo has severe AVN and slippage of the femoral head and I am not sure it will work….been accepted by Duke but told by other doctors that it is a waste of my time…one actually laughed! Of course these guys don’t do the surgery so what the hell do they know….

    I really need some answers as I’m told a fusion is the best choice. What kind of choice is that?

    I look forward to your responses…..thank you so very much.

    Julia

  251. amit Avatar
    amit

    @ muthu , hi , i underwent ossron 4 months back xrays showing positive result. will do mri after 2 months . iam really feeling good. think dr.gauresh and dr. dinshaw are pioneer of this in india , i had been to their office

  252. amit Avatar
    amit

    @ anil ………

    i went for surgery 4 months back , it has good results in early stages.have done any surgery

  253. Muthu Avatar
    Muthu

    @amit,
    Thats great to hear about ur recovery…. Could u pls let me know more about ur rehab…? My docs have advised to use walker for next 6weeks and later i can get back to normal work…..

  254. Brad and Kim Avatar
    Brad and Kim

    @Julia – great to hear from you, I have thought about you and your son so much. It is heartbreaking to see your child on crutches and try and deal with the unknown. You are so correct, I have heard “they are the best in the country as well” however, I have not heard of Salt Lake City- I will check it out. Our thoughts are the same… gather as much information from all the experts and try and make the best decision. Unfortunately all that research takes time and time is precious to our boys.
    May I call you this evening? I will be home around 730 EST, 430 PST – will you be available this evening? If not, I am available anytime tomorrow. The weekends are a bit quiet since all the docs offices are closed.

  255. Kim's Dad Avatar
    Kim’s Dad

    Search “Google Images” with “free vascularized fibular graft”. You will get numerous pictures of the procedure.

  256. julia Avatar
    julia

    Thanks Kim Dad, I did just that and with each picture I see there is some of ball that is still there, and round….Jarrod’s is not so I don’t see how this will help him. I really want this for him as it;s his own bone and maybe it will work. The doc at Duke saw his images and said he was a candidate for it. He is the specialst and must know something I do not. I sent an email and am snxiuosly awaiting a rely to my questions. Maybe after that I will feel better. We can alwyas go to Duke and see the doc and not have the surgery but…..

    Anyway, the more I read the more confused I get.

    Julia

  257. anil Avatar
    anil

    @hi amit & muthu

    till date no surgery,looking for best suitable option.i am working in public sector company having their own hospital,2 days back i meet my doctor(company hospital) and having chat on ossron.He asked me in INDIA where this therapy is operated.so please give me some details of hospitals(location) and doctors(email id).where u get oprated.

    Anil

  258. anil Avatar
    anil

    @hi amit & muthu

    till date no surgery,looking for best suitable option.i am working in public sector company having their own hospital,2 days back i meet my doctor( @ company hospital) and having chat on ossron.He asked me in INDIA where this therapy is operated.so please give me some details of hospitals(name and location) and doctors(email id).where u got oprated.

    Anil.

  259. amit Avatar
    amit

    hi@ anil

    i had undergone ossron , and till date doing very good.you can contact Dr,Dinesh he had helped me with my sugery, it is available in all the major hospitals in mumbai , according to your budjet he will help you. u can call him

    9930235739.

  260. Muthu Avatar
    Muthu

    @anil,
    Please visit the website http://www.regrow.in…. Ul get more info… I was operated in kokilaben dhirubai ambani hospital mumbai… I’m stil in hospital and flying back to Bangalore on 29th March.. One thing u need to understand, ossron threapy is totally different frm stem cell threapy…. I had mail communicatio with Dr. Soek Jung Kim (who is doing research on this threapy in Korea) and according to him if core decompression is done properly and cells are injected at right place than there lots of chance of complete healing of avn…

  261. amit Avatar
    amit

    hi @ muthu , as i had early stage AVN the CAHNCES OF recovery ARE very high , i was partial weight bearing for 4 weeeks and know iam full weight bearing , jus i am avoiding stress ful work , but i feeel normal now, sill doctor has advised not to strain .
    hope you r doing well

  262. Easa Nourouzee Avatar
    Easa Nourouzee

    Hi all –

    Surgery was a success! I had the bone marrow aspirate concentration procedure performed by Dr. Einhorn at the Boston Medical Center on Tuesday. A little bit of soreness followed but nothing bad at all. It feels like I got punched on the side. Feeling really good about my chances after speaking with Einhorn. If you are early stage AVN this is the procedure for you. Why do a core decompression when you could do this which is less invasive, less downtime, and actually will stop the progression of AVN and even reverse in a lot of cases. I’m one step closer to getting my life back. Einhorn stated to take it easy for the next 6 months and then I should be able to get back to running after that.

    Please contact me if you have any questions.

  263. Kim and brad Avatar
    Kim and brad

    @easa
    Wonderful to hear you are so happy with dr einhorns procedure. I am thrilled for you!
    I would love to talk to you about this – our 13 y/ o son has Avn and we have been in touch with dr einhorn regarding treatment. Blake would be a candidate for the procedure – we just have lots of questions

  264. Dr.Dinesh Avatar
    Dr.Dinesh

    @EASA,
    HI ,
    WE do also offer same stem cell therapy in india, have performed good number of cases with positive out comes, may i know the total expenses for the therapy at your place.

    regards
    Dr.Dinesh p
    [email protected]

  265. Brad and Kim Avatar
    Brad and Kim

    @ Easa
    Wonderful news! I am thrilled to hear about your exciting outcomes. I would love to chat with you about this procedure. Our son Blake age 13 has ANV due to a hip dislocation. We have sent Dr. Einhorn Blake’s images and have had a conference call with him as well. He feels Blake would be a good candidate for the procedure and we are optimistic about it too. We do have some questions and would greatly appreciate your insight. May we chat? If so, would you prefer calling me or I can call you…let me know. THANKS!

  266. Gys Avatar
    Gys

    Congrats Easa!

    Is good to see that these procedures are done in the US :-)

    Let us know how your recovery goes. Now I’m wondering if I could benefit from that since I already had a hip core decompression. All the surgeons I talk to shy away from anything else to do for me, since I’m child-bearing age (Female/29yo). How frustrating! :(

    I will look more into Dr. Einhorn, it seems like there are no other doctors performing this procedure in the US besides him. If you guys find somebody else closer to the West Coast, let me know.

    Brad and Kim I wish you the best with your son!

    Gys

  267. Brad and Kim Avatar
    Brad and Kim

    @gys
    There is a place in Denver called Regenexx that advertises adult stem cell for osteonecrosis. Our concern is Blake’s age with the growth plate. As we all know too well, it is important to research the clinic and doctor. Aside from the usual risks surgery presents, you also want to make sure they don’t violate the cartilage. We are learning more about this… it is can lead to chondorolysis, I understand it is rare but we know what “rare” means to those of us struggling with rare AVN!

  268. Brad and Kim Avatar
    Brad and Kim

    @gys
    I do think Dr. Einhorn’s level of expertise would be worth traveling to Boston (other doctors have high regard for him – we have gotten several unsolicited opinions from 3 orthos that are very positive).

  269. Easa Nourouzee Avatar
    Easa Nourouzee

    @Dr. Dinesh – I don’t have the exact amount of the surgery but it was somewhere in the realm of about $35,000. This includes all costs: surgeon, anesthesiologist, and hospital. Luckily my insurance will cover a large majority leaving me with about $2000 out of my own pocket.

    @Brad/Kim – Please feel free to call me at anytime 206-372-1787. I would love to discuss the procedure with you so that you can make an informed decision about your son. It’s now day 4 and I’m feeling great! I haven’t had to use the pain killers since day one. I’m going to start walking on it in a few days….still a tiny bit sore on the outside of the hip where they made the incision for stem cell injection…but not bad at all.

    GYS – I got onto a number of support group and blog pages while I was resting in my hotel. I found yahoo has a pretty good support group. In that group I discovered that at Stanford University they are performing a stem cell procedure. I didn’t look into detail on this but type in “Avascular necrosis support” on google and you will find the yahoo group. If you go to the archive of posts type in Standford stem cell and the links should come up. Let me know if you have any trouble finding it.

    To All – So I’ve been spending a lot of time since Tuesday online looking at different support groups. I sent a number of emails out to doctors who are moderaters or affliated with these groups and asking them why more doctors are not letting their patients know that stem cell therapy is out there for AVN’ers.

    I’m very frustrated right now with most of their responses because for the most part they are very pessimistic and continue to use the word “experimental” with this surgery. The word experimental tends to carry a negative conotation with it. Regardless, all I’m asking is that doctors across the country at the very least let their patients know it is out there. This procedure will not become mainstream until more AVN’ers try it so we have more solid studies. In addition we need the medical community to back this by letting people know it is out there. Yes, this procedure is only benefitting the early stage AVN’ers but if we can restore a few lives then all the better.

    Here is one of my responses to an ortho who didn’t seem to get my point. Sorry for the rather long post but I’m very passionate about getting Einhorn’s procedure out in the open. I took me a year to find out about him and that is unacceptable seeing as I saw 4 different orthos in Seattle:

    David,

    I can see where you are coming from but I still don’t think you’re seeing my point. Maybe I am being hard on those Seattle orthos but do you have avascular necrosis? Do you know what it’s like to go from being an active soccer player to a cripple on crutches for over a year at age 29.

    This disease was both mentally and physically taxing and broke me down several times this year. I’m a project manager for McKinstry (mechanical design build firm) and continued to work through this difficult time using crutches all the while. Going out to project sites…walking a million square foot data centers. It was awful. I dealt with so much pain over the year. I wasn’t able to walk for more than a few minutes before getting the pain.

    My first email may seem like there was just a small lesion but I have been dealing with severe pain for over 2 years. It was because of the doctors that I’m at where I’m at now. I went in over 2 years ago complaining about a hip pain. I asked the doctor if an MRI was in need and he laughed and said no need probably just a muscle strain. I trusted his medical opinion and now I know never to do that again. If I would have obtained the MRI at that time I would have been diagnosed a year earlier and who knows maybe the crutches could have healed the disease….but unfortunately, the doctor decided to speculate what he thought was the problem instead of obtaining visual evidence via an MRI. Sorry I have a slight biased but toward the medical community but after going through this I’ve decided that I need to help people out there who are misguided by these doctors.

    The first ortho I saw in Seattle had me walk on crutches for 6 weeks. I met him 6 weeks later for follow up and he was ready to do a core decompression. I felt like there was a dollar sign above my head and he was only concerned with making money. How could he want to perform a core decompression without even having any evidence of what the bone looked like after crutch use? I decided he was not the right one so I went to Swedish Hospital and met with Dr. Crutcher. At first, Crutcher seemed to be optimistic about my chances of healing. So he instructed me to use crutches for another 6 weeks and then come in for an MRI. That’s more like it…..some visual proof. The follow up MRI revealed no change in the lesion so he instructed me to get back to walking. I did so but the pain came back and I continued to walk on it for another 6 months. In December I went in for an MRI and the dead lesion had increase in size. I was very concerned and when Crutcher callled me he said that it had increased by about 15%. He told me to keep walking on it and come in a few months for more x-rays. Seriously? That was when I lost all faith in the medical community.

    Let me get this straight. My MRI scans have revealed that with crutch use over a 5 month period there was no change in the bone disease. Now when I went back to walking the MRI scan revealed a 15% increase in dead bone. Therefore, the weight bearing activity is worsening the disease. Why then would a doctor tell me to keep walking on it? The only conclusion I can come to is that he wants it to get bad so he can perform a hip replacement.

    All I wanted was for the doctors to at least let me know of all available procedures regardless of how far along studies were. The only way we are going to have solid studies on this procedure is if more people opt for this surgery. Please be more optimistic about this surgery….I’m really tired of people telling me this is experimental…..look at the damn results. It is proven for over 3 years….not to mention Einhorn had gone to France over 10 years ago and began studying stem cell therapy. Stem cell treatment is the future of medicine not only for avascular necrosis but for other problems as well. Why perform archaic invasive bone procedures when we can utilize our own stem cells in certain cases. Luckily my insurance company covered this after a couple of rounds of review. The more and more people go for this the more it will be the norm and mainline as you refer to. But the only way we are going to get it to the mainline is if people like yourself in the medical community back Einhorn and his procedure.

    My hope is that more people go for this instead of core decompression. I’m very educated about this disease and understand that a limited number of people are affected by this but these are people lives. Give them the option and let them know its out there. Why would someone want to get a core decompression if they have a better option of actually healing the disease. Yes I understand that this surgery is only beneficial for those in early stages but let’s help as many people as we can.

    Bottom line is I encourage you and the medical community to embrace Dr. Einhorn and his work because he is the reason I will get to restore my life back to normal. Please stop the pessimism because its very negative. I’m going to continue to email you on my progress so you can see that this is not some experimental procedure.

    I hope you can see where I’m coming from and I apologize if I have offended you or Lynn in anyway. It’s just that I’m very passionate about this after having gone through what seemed like the death of Easa. Again thank you for your time. I appreciate any further thoughts from you on this matter.

    Easa Nourouzee

  270. Easa Nourouzee Avatar
    Easa Nourouzee

    @GYS –

    The Stanford doctors that are involved with the stem cell treatment are Dr. Stuart Goodman and Garry Gold.

  271. Gys Avatar
    Gys

    Easa – Thanks a lot for getting that information to me! I had even thought to one of my superiors where I work wondering if our health plan would cover such a procedure. I found out that Dr. Einhorn and BMC are in our out-of-state network. She advised for me to find out if the procedure can be considered medically necessary and not experimental. If it is considered experimental then it won’t be covered in my case :( But I’m hoping it will. I just read an article about Dr. Goodman in Stanford and I’m currently researching more.
    I have just recently started to have more pain in both my hips and also knees. I consulted with a different surgeon since he’s closer and I don’t see my regular surgeon until July. He didn’t do any x-rays but wants to see all the ones I’ve had since surgery to compare to a current one to be taken soon. He was still sharing the same attitude of most doctors, that since I’m a young female in child-bearing age there is not much they can do unless I’m in excruciating pain. I just think that if I were to get pregnant that extra weight may make may pain and mobility worse and then no doctor is going to be willing to help me. So the stem cell options are really encouraging. I already contacted the Regenexx practice in CO and will be getting in touch with the doctors at Stanford.

    Brad & Kim thanks for your advice too. Easa, I’m glad to hear somebody is finally giving orthopedists a piece of their mind regarding AVN. I know your indignation and I’m glad to read about your experiences. Thanks to that I have more hope I may be able to walk again without pain and maybe can go back to running and even soccer :-)

    I forgot to mention that my total thyroid removal surgery went well, and though the final pathology is kind of weird, since they can’t rule out cancer, but they still won’t call it so. Overall I’m getting back to my normal energy levels and I’m glad I haven’t had to have radiation treatment for it (and the isolation that is part of the treatment)

    Best of luck to all and I will keep you posted if I can get the stem cell procedure done sooner or later this year.

    Gys

    P.S.: Anybody on Facebook?

  272. Brad and Kim Avatar
    Brad and Kim

    @ Easa
    Go get em, Girl! I feel the same way about the medical field. We quickly realized we need a scientist/researcher/physician – not just a doctor for this AVN. I will make absolute sure the docs here get the message loud and clear – give patients the information so THEY can make the decision. My son’s doc also said it was too experimental and thought we would be crazy to try the stem cell. I say – the odds of collapse are too great. I have since learned through this process the advice my son’s doc has given us has been way off – we are lucky Blake hasn’t collapsed yet with all the activity he was allowed to do.

    We heard good news yesterday – since Blake’s AVN is due to trauma the MRI is actually showing bone generation and regrowth. We had a doctor/scientist look at the MRI and he gave us solid data to encourage the wait and see approach for Blake, at least for now.

  273. julia Avatar
    julia

    Hi Everybody,
    I completely agree with Easa about more doctors being on board with any and all treatments avaiable to patients with AVN. I KNOW there is more than the fusion or THR but that is all the doctors I have talked to in Seattle tell us. It is like they know there is something else but don’t want to share because of the way THEY FEEL about the provedures, not how it could or could not benefit the patient. Not every procedure will work for every AVN’er as there are several stages of this disease. What we as patients or parents or friends need to make sure we do is always question why, why why and what are the other options out there for AVN!!! I think there also has to be a more rigorous approach to kids who get this such as my son who is 16 (15 when he got hurt) and Kim’s sone Blake who is only 13 years old!!!!!!! The choices that are given should be taken so much differently for kids as they are still growing and what may work for Easa at 29 will not necessarily work for Jarrod at 16. Plus this “JUST WAIT” approach is Bulls**T!!!! The longer you wait, the worse you get in most cases that is.
    If when we found out that there was AVN occuring froom the 11-20-10 surgery we could have opted for a grafting or the stem cell but now that the doctor came to us in late February and tells us he really doesn’t know what to do anymore, go see this doctor, WE HAVE LITTLE CHOICE! My kids’ AVN was extremely aggresive. He went from having a full size round ball that was dislocated off of his growth plate in September to full collaspe ib February. I feel like I have failed my son and now he will have to pay for it the REST OF HIS LIFE because I didn’t act sooner or was too trusting of the stupid doctor who in his huge arrogance siad he could fix him with this operation, I could have done something, anything to find him some help. Instead now we are at a standstill with choices. Even though he was told by Duke that he was a canidate for for FVFG, every other doctor says his AVN is too far advanced for any hope of saving his hip.

    I also like Easa am tired of doctors looking at me with pity in their eyes as they talk to my son. Or truthfully I think they are so overwhelmed with the diagnosis and the ugliness of the mess my son’t hip is that these doctors don’t have a clue what to do…..except give me the name of yet another doctor who might be able to help; Thank you very muh Seattle Children’s Hospital…what a waste of my time.

    Science has also got to get caught up with their THR and find a way to make them last longer and fit better. How come it is they can transplant a friggin hand or heart, of liver or kidney yet no one can figure out how to make a hip last longer or better yet, have a clue how AVN starts and how to educate the physicians out there to seek out treatments for their patients from the get go. I am so very angry that even though this occurs in 10,000-20,000 people per year and the bottom line of AVN is if you don’t catch it early enough your hip is gonna die and there is nothing you can do about it. Well there are somethings to do but you better do it early cause let me tell you, there is a line that once you cross it you cannot go back and that is where my beautiful, young, active, smart, loving, caring, generous 16 year old son is at :-(

    So, what now, well I went on the ON/AVN foundation website and happen to find a doctor at Sharp Memorial Hospital named Dr. Richard Santore that is extremely familiar with ON/AVN and was recommended to me by another doctor that even though he is booked until late May, he is going to squeeze us into his schedule when we go to San Diego from Seattle to check out treatments options at Rady Children’s Hospital….Hell my son’t own surgeon won’ return a phone call for days and when he does he’s not happy about my 4 phone calls to ask yet another question. By the way, we no longer see him for treatment but I did find out that he has pancreatic cancer and was on/is chemo when he operated on my son. I was not told by him nor given the choice to seek out another doctor…unbelievable. I don;t think anyone who finds out they have terminal cancer should be operating on anybody period!

    Ok so I amy have wrote as much as Easa and I am sorry for the long rant but I can’t thank ALL of you for your support. When I spoke with Kim on the phone for an hour and a half she just let me go on and on and didn’t care that I may have said the same thing twice and you know why? Because for the first time when I spoke to her when she said “I know what you mean” I knew she really did know and that is worth everything right now. So thank you for being there and thank you for caring. I may go have a good cry right now. I am in morning for the life my son had and knowing that no matter what, it is not the life he will have ever again.

    Julia

  274. julia Avatar
    julia

    So sorry for the horrible typos….my brain was thinking faster than my fingers could type…LOL

  275. Brad and Kim Avatar
    Brad and Kim

    @ Julia
    I am sorry for your sadness, I do get it and I look back at the past 6 months and wish I would’ve done things differently. Remember, we have done the very best we could with the knowledge we had at the time. The doctors should be ashamed of themselves, they need to know their limits – we can’t expect to know them.

    Blake’s doctor doesn’t return calls or emails either – ridiculous! We have one more appt with him and I may be going by myself with lots of words for him. Yesterday I read the MRI written report and learned he messed up on the surgery, the screw he inserted has gone into Blake’s cartilage. BTW – he is the director of orthopedics, “the best” we were told. If we get Blake’s hip fixed, we will then have to fix the screw.
    I don’t know … 1 800 lawyer?

    It is hard when our boys have done everthing right, they are playing by the rules- it is a real bummer

    I emailed you earlier about Dr.Kim from Scottish Rite. We spoke yesterday, he is a scientist/doctor and I felt he genuinely cared and had stong data to support his impressions. Did you contact him?

    I think of you and Jarrod lots.

  276. Dr.Dinesh Avatar
    Dr.Dinesh

    hi blog,

    its almost more than 3 times more expensive there in US , ………… nways its the health that matters at the end…

  277. Easa Nourouzee Avatar
    Easa Nourouzee

    @Dr. Dinesh – I wouldn’t be surprised. America is one messed up country. I’m getting ready to move to Europe in the fall in hopes for a permanent move. Capitalism is ruining the country…..when your system’s number one principal is maximize profit margin you are no longer living life…you are living a business. In most countries what are seen as public services/institutions are privatized in America….making them more unaffordable and giving people less access to them. Capitalism and Communism are both extremes…..Socialism is a great balance in between. It saddens me to hear Americans talk about Socialism like its the devil. Sorry for the political rant.

    @Julia –

    I share your sadness and my hear goes out to you and your son. My only words of advice are to keep pushing through this difficult time with your head up and a positive attitude. Never stop doing your research. In this day and age we are continuing to make advances in the medical field. Everytime I was confronted with a negative or pessimistic doctor it made me stronger. I just kept thinking to myself..”I’m gonna beat this.” I know it’s not much but one other thing that I kept in the back of my head was the fact that this was not a terminal or fatal disease. Even as bad as it seems at least we are not going to die. Give me a ring if you ever need to talk. I was fortunate enough to have people around during my year of hell and if it wasn’t for my girlfriend I probably wouldn’t have gotten through this mentally.

    @Brad/Kim – I’m actually a male…..no worries though. It happens all the time. Most American girl names end with an “a”. Easa is a Persian name meaning Jesus in Farsi. My parents used to joke with me when I was younger because we used to get beauty pagent mailings for me in the mail all the time because they thought I was a girl. Haha

  278. julia Avatar
    julia

    @Easa….You are so right, this is not terminal and it is not the end of life as we know it. This can be fixed, it may not be easy but it will be over one day. I am so glad to hear your precedure went well. Don’t forget to keep us updated. BTW, did you ever see Dr. Downer in Wallingford? Children’s told me that he is a doctor in Seattle that will do THR on teenagers. I did make an appt with him as Children’s told me they coulnd’t do anything to help. Also, what about Dr. Keith Mayo at Tacoma General, anything about him?? I love that you live in Seattle and we can pass around the names of docs in our area.

    @Everybody; thanks for letting me go off and rant last night. I was just at the place were frustration leads into anger and well, I guess it all had to come out. I am so thankful for the contacts I have made and all the great advice I have been given. I will let you know if anything developes. We go to San Diego on the 16th of April, just me and my boy:) Has anyone flown lately that is on crutches? How was that and did you crutch to the terminal and put them below like they do strollers or did you wheelchair it? Also, I know that long periods of confinement/sitting is painful for my son so any thoughts on making him cozy? Thankfully San Diego is a short flight from Seattle….

    Talk to ya later!

    Julia

    @Kim; you have been my Godsend…..thank you from the bottom of my heart and I look forward to many more talks or emails….can you get texts? I have some great pictures on my phone of Jarrod’s hip now. You could compare them to the one I sent you earlier and see how very pretty his hip is..too bad we can’t up;oad pics here, would be very interesting to see all the differnt stages of AVN.

  279. julia Avatar
    julia

    September surgery for dislocation…at this point the ball is still round:)

  280. julia Avatar
    julia

    Well I tried to upload an image but it didn’t work…..Luke, can you try it out and see if I did something wrong.

    @Everybody: How many of you have gone onto the ON/AVN Foundation Website or the AVN support group?

  281. Easa Nourouzee Avatar
    Easa Nourouzee

    @Julia – I have not heard of Dr. Downer in Wallingford but I do know Mayo in Tacoma. One of my former soccer coaches recommended I see Mayo. I never ended up seeing him though because I had already seen 4 different orthos in Seattle. After the 4th one I decided that it was time to consult the experts and that’s why I got in touch with Einhorn.

    As for using crutches while traveling….I just got done doing so to and from Boston. I was concerned that sitting on the plane for that long in that position was going to be bad after surgery. Fortunately, most airlines reserve the front row for handicapped. I flew jet blue…I called and told them the situation and they gave me the first row with no problem. Way more leg room. As for the airport terminal….Upon arrival just ask for a wheel chair. They were pretty accomodating.

  282. Brad and Kim Avatar
    Brad and Kim

    @Julia – thank you, we have been good for each other. With all the research I have done I have not found another situation like Jarrod’s or Blake’s – I am glad we have found each other (thanks Luke!). I will most certainly be thinking of you on April 16th. Jarrod is hearing your message loud and clear – you don’t have to say a word – he knows you are doing everthing in your power to educate yourself and make the right decision for him. He has faith in you for good reason. You can text me: 904.206.9604 (or call anytime)

    @ Easa – my apologies about referring to you as a female and thank you for your understanding. How are you feeling? I have heard so many positives about Dr. Einhorn.

    According to Blake’s MRI (found someone who can read it scientifically-Dr. Harry Kim @ Texas Scottish Rite) he is in the healing phases of bone generation. The dead bone appears to be gone and filled with new tissue. A plus is that the vascularity of the femoral head seems to be fully functioning at this point. Of course we will get a second opinion and a more recent MRI to confirm the findings. Currently Blake is on crutches and remains asympomatic.

  283. anil Avatar
    anil

    @amit
    hi i want to talk with you personally.plz. Mail me at [email protected]

  284. amit Avatar
    amit

    @ anil

    hi,
    iam travelling u can mail me [email protected]

    take care

    @ muthu

    how r u doing ,

  285. Conor - from Ireland Avatar
    Conor – from Ireland

    Hi all,
    QUERY RE: HYPER BARIC OXYGEN TREATMENT

    Very useful website – great to read so many detailed contributions.

    I have early stage AVN – 10-15% in both hips – no cause established.
    I have no pain. It was picked up when I went for an MRI scan for stiffness in my hips. I have shallow hips and general wear and tear, but the AVN is what is keeping me out of football.
    Delighted to hear that cycling seems to be good for it? I have heard mixed views on this, but have been cycling still cause I need something to feel alive and kicking!
    I am considering starting hyperbaric oxygen treatment (inhaling oxygen in a compression chamber), to stimulate stem cells and get blood flowing and get oxygen up to the femur. I did not come across this on the posts, apologies if it is already covered, but could anyone share their experience of this if they have done it?
    Did it heal the AVN, or maintain it an its current early stage?
    It is expensive and time consuming so it is a difficult decision to make without a significant amount of research carried out.
    Many Thanks in advance for any help
    Regards
    Conor

  286. Conor - from Ireland Avatar
    Conor – from Ireland

    By the way,
    I’m 28 years of age, have been active all my life.
    I was diagnosed 2 months ago.

    My first specialist recommended core decompression immediately. After researching this, i have decided against it, especially as I am at such an early stage.

    I got a second opinion, who recommended a break from football for 6 months, followed by another MRI to see if it has healed itself.

    I find it difficult to sit and wait for 6 months, as it may deteriorate rapidly. So I am looking at any alternatives, e.g. hyperbaric oxygen.

    Any help is greatly appreciated.
    Great to stumble across such a great community of people supporting each other. I have been trawling the web the last 2 months and just found this website today – by googling ‘AVN and cycling’!
    All the best
    Slan go foill
    Conor

  287. Brad and Kim Avatar
    Brad and Kim

    @conor – you may have noticed Easa responses regarding Dr. Einhorn at Boston University. He had the treatment (adult stem cell transplant) recently. The results have been very promising. I strongly suggest contacting Dr. Einhorn. Our son has AVN 30% due to hip dislocation, thankfully his growth plates are open and his osteonecrosis seems to be healing on its own. We had a wonderful conference call with Dr. Einhorn about the procedure and we have heard excellent referrals about him from other docs (unsoliciated). Google: Thomas Einhorn – Adult Stem Cell.
    I think your gut re: core decompression is accurate from what we have researched. Wishing you the very best!

  288. Conor - from Ireland Avatar
    Conor – from Ireland

    Hi Brad and Kim,
    Thanks so much for your response!
    I went back through all the comments in detail and came across Dr Einhorn’s treatment. It seems much less invasive than core decompression. I have since contacted his office and I am sending over my xray and MRI scans today, so he can assess whether I would be a suitable candidate for his treatment.
    Great to hear that yout son’s osteonecrosis seems to be healing on its own. I am hoping for a similar result!

    I have just commenced the hyperbaric oxygen treatment in the national hyperbaric centre of Ireland. Over the last few days, I talked to other Irish people effected by AVN, who used hyperbaric chamber as a method of treatment. They believe that this treatment kept their AVN at a manageable level and meant that surgery was no longer required in many instances.

    The hypebaric centre recommend 40 treatments of 90 minutes oxygen inhalation in a compressed chamber. I intend to run this course of treatment over the next 8-10 weeks. Apparently, after 10 sessions, your body has 8 times the normal level of stem cells in circulation.

    Meanwhile, I intend to discuss the stem cell treatment with Dr Einhorn to see whether I would be suitable and also whether my health insurance would cover it. I will keep you updated.

    Thanks again for your reply. Any views on hyperbaric treatment from anyone else out there are very welcome!

    All the best,
    Conor

  289. Brad and Kim Avatar
    Brad and Kim

    @conor – Dr. Einhorn is truly great! His procedure is much like core decompression however he adds stem cell, it makes sense really. We were impressed with his genuine desire to help our son.

    I have not heard of the Hyperbaric O2 treatment, very interesting! I will check into this for Blake.
    It sounds like you have caught this AVN early, I am sure you will have a good outcome. Keep us posted – we would love to hear how things go for you.

  290. Terri Avatar
    Terri

    Hello, I have been reading all your post’s. I am an active 44 year old female. 6 weeks ago one day both my hips started to really hurt, out of nowhere. I waited and ignored it thinking it would go away. It never did. Last tues I went to see my Dr about this hip pain. He ordered an xray. Wed I got a call that my xray was negative (fine) but I should see an ortho for the symptoms. Fri I take my xray to see Ortho Doc. He examines me looks at xray and proceeds to ask me about any steroidal med use. Yes, in Dec i took one of those steroid packs for 5 days ( i had been coughing for almost 2 months due to allergies.) Dr then told me a little about AVN and ordered an MRI for this coming fri. I went home to look up AVN and I am in total shock, bordering on hysteria I am crying and a nervous wreck. Reading some of your posts about your children almost makes me run in the bathroom and vomit I feel so bad. Since you all have already gotten the diagnosis, what advice can you give to me regarding what I should do first if indeed my MRI shows AVN? Thanks for any input

  291. Brad and Kim Avatar
    Brad and Kim

    @ Terri – you are in a very difficult period of waiting…wondering…worrying… some doctors are quite good at instilling such fear. My advice would be to take charge of your care, be your own best advocate, ask ALL the questions you want, be informed. Did your doc mention any indication of collapse? From what I understand collapse will show up on the xray. Do your femoral heads appear to be round and in good shape (again the xray should show this)? If your doc didn’t answer these questions and you want to know, call them and ask if you want. Did your doc recommend any activity or lack of? My understanding is that it is best to stay off your hips as much as possible until you decide what to do.

    If you do in fact have AVN, you will want to know what % of your femoral head is effected. Find a physician that is soley a hip doctor and believes in research and is possibly a scientist. (Dr. Einhorn is a doctor/physician/scientist) A doctor we are corresponding with is Dr. Harry Kim from Scottish Texas Rite – he is a peds hip doctor. Use the entire country as your resource – doctors will read your xrays/MRIs and work with you regardless of distance. (these are my opinions of course) We have left Blake’s doctor in the dust, this is not his area of expertise. We are still see him for follow ups but not for advice really.

    Now, in my opinion, some optimistic news – Dr. Einhorn (I probably sound like I am a sales person for him-I have just done lots of research)is doing some exciting research/studies with Adult Stem Cell and AVN. I am guessing you have already researched this. It is exciting.

    Take care of yourself as if you are taking care of your child.

  292. Terri Avatar
    Terri

    Brad and Kim,
    Thank you so much for your input! My hip xray looks completely normal and the femoral heads are round, the dr even commented that whoever the dr that braced me as a baby ( i was born with hip dysplasia) did a fantastic job and the hip position in the socket looks great. However, due to my unrelenting pain out of nowhere starting about 6 weeks ago he brought up AVN and some of the pain treatment (core decompression) Also asked about steroid meds. Also as an interesting side note my sister had calve legg perthes disease at age 5. She went thru traction and casting as was completely cured no issues. I had never even heard of AVN and If I know steroid meds were a factor I certainly wouldnt have taken them. In dec for allergies and a couple recent months a low dose for acne. I go for my MRI fri the 22nd. I am scared to death! I am assuming since my xray looks normal I would be in an early stage?! I will keep you posted.
    Thank You so much.

  293. Gys Avatar
    Gys

    Hi Terri!

    Don’t be scared. The MRI is the way to go if they want to find out if you really have AVN. Since it doesn’t seem like you did steroids for too long you may not have AVN, but even if you do, the fact that it is not noticeable in the x-ray is a good thing. Dr. Einhorn’s Bone Marrow Aspirate Concentrate (BMAC) could be a very good option for you if it is AVN because it is early and there is no collapse. Dr Einhorn e-mailed me and explained that he does not treat hips with any indication of collapse. One of mine does have some collapse which is hard to see by the untrained eye. I’m post-core decompression. When my AVN was found it was not visible in x-ray. Then I didn’t know about Dr. Einhorn’s procedure so it took me months to make a decision regarding decompression that seems to have really helped one of my hips while the other is on Stage III.

    So my two cents, in summary is don’t be scared! Is better to be informed and explore your options early in the game :-)

    Keep on the fight!

  294. Terri Avatar
    Terri

    Gys,
    Thank you so much! I just feel so helpless and alone. So hearing from you guys really helps. I will look into Dr Einhorn as soon as I know for sure.
    :)

  295. Brad and Kim Avatar
    Brad and Kim

    @ Terri – sounds like your doctors and you have been very proactive. If you do have AVN is sounds like you caught it early – yeah! You will be okay! Good luck tomorrow…

  296. Easa Nourouzee Avatar
    Easa Nourouzee

    Terry – Welcome to the group. I was reading your posts and wanted to give you a little feedback on myself as I just went through the BMAC treatment with Dr. Einhorn in Boston. I had the stem cell transplant 3 weeks ago and I’m doing very well now. If you are in early stage AVN I would strongly recommend this as opposed to a core decompression. This procedure is so minimally invasive I was walking after 2 weeks. With core decompression I’ve heard you are down for about 6 weeks. Plus why do a core decompression when you could do a stem cell transplant and have a chance of healing the bone and AVN going away completely.

    I only have AVN in my right hip. There was about a quarter size dead spot on my bone and they were calling it Stage 2 (no crack or collapse). They told me it was idiopathic for me as they did not know what caused it. I was diagnosed in January of 2010 as the MRI scan revealed the dead bone. I know what you’re going through but fortunately this blog is very helpful in determing the best solution for your case of AVN.

    It sounds like you are pretty early stage so I strongly recommend getting in touch with Einhorn right away. I’m from Seattle and consulted a number of orthos after I was diagnosed. Unfortunately, being a rare bone disease the doctors in my area were not very knowledgeable. My advice to you is consult the expert – Dr. Einhorn.

    It’s still early but I have not had any pain in my hip for 3 weeks now. Granted I’m not walking a lot yet (just around the house and grocery store a little) but before my surgery I was experiencing pain on a daily basis for almost two years.

    I wish you the best of luck and please feel free to contact me with any questions about the BMAC procedure. Keep a positive attitude. I broke down when I was diagnosed with this but I told myself I was going to beat it and it looks like I’m on my way back to a normal life.

    Oh and by the way I would also recommend buying a set of crutches and using them until your scheduled surgery. It’s hard to say how fast the AVN can advance. I took 3 MRIs in 2010: Jan, June, and December. During the six month period between Jan and June I used crutches to avoid any weight bearing activity. The June MRI scan revealed no change in the dead spot. I began walking after this beause the doctors thought it was on track for healing. After walking on it for almost 6 months I went in for the MRI in Dec and the dead bone had gotten worse by about 7-10%.

  297. Terri Avatar
    Terri

    Easa,
    I am going in today for my MRI today. I hate to sound like a whiner (especially with some of what a lot of you have gone through) But I feel like I am on the verge of a nervous breakdown. I am crying several times a day, Im so nervous and axiety ridden, my stomach is in knots! I have a 6 year old kindergartener and I am trying to keep myself together for her. I don’t want to scare the living hell out of her too. I feel like it is the end of the world and my constant hip pain is a reminder every second I am awake. I will def contact Dr Einhorn, and please kepp us posted on how you are doing post your BMAC procedure.
    Thanks
    Terri

  298. Terri Avatar
    Terri

    Hi
    Also are there any safe exercises one can do with having AVN in the hips? I am going a little nuts! I am usually hiking, biking working out at the gym along with housework and keeping up with a 6 year old? Is it good to do nothing and let all the muscles waste away?
    Terri

  299. David Avatar
    David

    Well, here I am nearly 5 months after my left hip core decompression and the pain in my hip is worse than ever! An xray recently showed that the bone death had progressed a little and my doctor said there is nothing else he could do except THR. I am 40 years old with 4 year old and 6 month old girls, so I feel like i’m in a really bad situation.
    As a last resort a few weeks back, I went to my family doctor and told him the problems. He did give me some Indomethacin, which I take 50mg 3 times per day. This TOTALLY erases the pain in my hip!!! BUT, it makes me “spacey” and dizzy. Not a good thing when you are an executive manager working 10 hours per day! Plus I am afraid of the long trem affects of taking this. But for now I continue because of the amazing way it gets rid of my hip pain…I mean i could RUN when I am on this stuff!!!
    anyway, any suggestions??? THR??? Please advise.
    Thanks,
    David

  300. Gys Avatar
    Gys

    @ Terri:

    Don’t feel bad for your emotions…I think it is normal to feel like you and I’m glad you can share it with us. I keep breaking down often. Specially since I realized that due to my collapse there’s not many options for one of my hips, and it is more frustrating to see how doctors are not willing to help me since I haven’t had kids, so now I feel pushed to have them.

    Anyway, you will be in my thoughts today as you have your MRI. I think that because you have been told you MAY have AVN before the MRI it may be harder on you, considering how most doctors view this condition. I was told I probably had impingement or a labral tear and it was after the MRI that I was told of my diagnosis. It was hard to deal with it at the moment, I was really depressed, because he said the words ‘necrosis’ and ‘total hip replacement’ during one visit. Just a few days before I was totally opposed to any surgery even for labral tear repair, and then I found out a good doctor that could do it and could be back running in a few weeks. So getting the AVN diagnosis was surely a shock.
    Back then I was only a bit sore and limping like when you pull a muscle running.

    That was in 2009 when they had only diagnosed one hip, now I have a marked limp and waddle and it hurts to go upstairs and downstairs (despite the fact that I recently lost 30 lbs.) I wish I had been aware of Dr. Einhorn’s procedure early on. I even took too long to decide on core decompression which has probably delayed any surgeries for a while but it still doesn’t take care of the necrosis. Even considering all of this I am still hopeful and I totally enjoy riding my road bicycle. It is the only time I workout without any pain. Since my knees hurt even the elliptical bothers me.

    I would advise to keep exercising if you’re already active. Try to avoid high impact activities (running, jumping, tennis, etc) and also work on strength training in the quads, hamstring, hip flexors, glutes, adductors and abductors and the quadratus lumbarum. All these muscles help to stabilize and move your hip, the stronger they are they better you feel. Don’t strain too much.

    As far as your daughter comes I understand your need to make her strong. I personally think that crying or letting go of your frustration can help you cope with any diagnosis better. Punching bag maybe? ;-)

    You may be able to do it while you’re alone in case you don’t want your daughter to see you. (though as a daughter myself, sometimes it is good to know your mom is human too) But you’re right, by being strong whatever your diagnosis is, you can help her understand it so she can support you.
    And by strong, I don’t mean you shouldn’t cry. You already are a strong woman by caring for your daughter. I totally respect that! (I’ve noticed this from the other moms in this forum)

    @ Easa – please keep us posted on your recovery. Good Luck!

  301. Gys Avatar
    Gys

    @ David
    What part of the country are you in? Is resurfacing an option or there is bad collapse? Some surgeons don’t suggest resurfacing because they can’t do it, so get second opinions. A Resurfacing will help you stay active with your young girls. In this blog there are many testimonials of resurfacing.

    Check out these sites when you can: surfacehippy.info and hipresurfacingsite.com
    These sites also have lists of surgeons in different states and out of the USA. Even if you can’t do a resurfacing you want a more balanced second opinion.
    The best of luck to you!

  302. Easa Nourouzee Avatar
    Easa Nourouzee

    Terri –

    You do not sound like a whiner at all. These are completely normal feelings. I can’t even count the number of times I broke down crying in 2010. It would just happen at random time when I would start thinking about it. Think positively though and you will get through it.

    As for exercise…..I would recommend swimming. I was never much of a swimmer before I developed AVN but now I’m using it to stay fit. Nice thing about the BMAC procedure is Einhorn stated that most patients are able to resume running about 6 months after the surgery. This is glorious news to me as I’m a passionate soccer player and have been all my life. I haven’t kicked a ball in almost 2 years now and its killing me.

    Good luck with the MRI. Whatever the result is just know that there are options out there to improve this. Keep doing your own research.

  303. Easa Nourouzee Avatar
    Easa Nourouzee

    Feedback on the BMAC procedure recovery period for me:

    1st week – crutch use
    2nd week – introduce weight bearing activity around the house(light walking)
    3rd week – full weight bearing

    I’m getting to the end of my 3rd week post op and I’m feeling great. I’ve been walking around the house with absolutely no pain….made a few trips to the grocery store and did well. I can feel the leg getting stronger and stronger every week. I had used crutches for the better part of 2010 (7 months) so my right leg is still going to need a few more weeks for strengthing but overall things are very well. The main thing is absolutely no pain or soreness and it’s only been 3 weeks.

    I will continue to keep you posted on the progress. So far so good!

  304. Terri Avatar
    Terri

    Hey guys thank you so much for your input and encouragement! I had my MRI today, and next tues I will see the Dr for the results. I will let you know what happens and will keep up with your posts as well.
    Thanks
    Terri

  305. Brad and Kim Avatar
    Brad and Kim

    @ Terri. I totally get the difficulty of trying to stay off your hips, Blake is struggling with that too. I tell him the most important athletic move he will ever do is to let his hip heal, the muscles will rebuild. This may be a fun time to do some simple things with your daughter… lay on the floor and do puzzles, games, build blocks, color, make puppets, play with dolls, make jewelry, completely relish in her sweetness… you get the idea. Blake is working on learning Spanish and writing his own book (two things he wouldn’t have done if he hadn’t gotten AVN). It must be challenging to do housework – laundry, dinner, etc. You will be mentally stronger than ever!
    It is okay to cry and be sad and scared – you are not being a whiner, you are being human! The emotions you are experiencing are so unique and uncomfortable – unchartered really. I truly believe you will be okay, hang in there.

  306. Terri Avatar
    Terri

    You guys are great! I am hanging in there. Just waiting for confirmation on tues. I have contacted Dr Einhorn’s office and will get my records to him ASAP. I hope I am in the early stages and that he can do the BMAC procedure on me. I just wonder why Dr’s dont ask any health questions before giving out steroidal meds? My sister at age 5 had calve legg perthes disease, so I wonder if this means I am more predisposed to this. Had I known about AVN in adults and that steroids are a risk factor. I would never taken them! Especially since in my case it was for allergies and acne just two annoying conditions I have.
    Thanks for listening

  307. Terri Avatar
    Terri

    @Gys Just re-read the posts. I am on facebook Terri Merrill Lortie feel free to look me up. I would love to talk to anyone who would like to talk. BTW I am going in for my results today so I am very nervous.
    Terri

  308. Kim and brad Avatar
    Kim and brad

    Terri- thinking of you – how did it go on Tuesday?

  309. Terri Avatar
    Terri

    Hi
    The Dr said my MRI was negative for AVN, I will admit I was a little skeptical. Is it 100% accurate? He said arthritis. Then told me i would be sure if I got cortizone injections and it relieved the pain even if temporarily. He said something like a pinched nerve would not usually show up as groin pain. I am wondering if I should get a 2nd opinoin? I have been taking naproxen for almost 2 weeks with no change in pain level. I also son’t want to do the injections in the hips.
    Terri

    1. Luke Avatar

      Many a contributor and reader in these comments found their way here after they took some sort of steroid for an unrelated problem. I would put cortizone off until you are completely sure. Of course you can get second opinions and you would be foolish not to. Another recurring theme in these comments are the doctors who repeatedly mis-diagnose. I myself fall under this category.

  310. Brad and Kim Avatar
    Brad and Kim

    @Terri – great news! A second opinion is always valuable I think, however it is likely conclusive. The radiologist reads it and writes the report and the Dr also reads it, that is two sets of eyes on it- you can get a copy too if you want. My other son, Kyle (age 11) has some arthritis issues… ugghh… this has been a tough year! Anyway, we are reasearching his issues (autoimmune disorder of some sort) and he is seeing a rheumotologist, has anyone suggested a rhemo doc to you? It may be nice to know why you have arthritis (if you do). This is just a thought – filter as needed! We are trying to elimate high allergens from his diet – gluten free is often suggested for arthritis. It is an easy diet to follow really (I have been gf for 10 years and it is much easier theses days!). Keep me posted, I hope you feel better soon.

  311. Terri Avatar
    Terri

    I asked the Dr about doing blood tests and he said yes, good idea and ordered an arthritis panel?! I am going to get the MRI as I did not see it or the report and I think I should get a 2nd opinoin, especially after reading what some of you have been through. But still having constant pain, So if it is arthritis an Rheumatoligist is who I should see?? As for the shots, No Thanks I think I will pass! Thanks everyone for your input, You have been very helpful and have helped calm me down.
    Terri

  312. Terri Avatar
    Terri

    Also you couldn’t pay me to take another steroid medication, especially in my case for just annoying stuff like allergies and acne. Why don’t Dr’s warn people about this stuff? Makes you not want to ever take a prescription drug again. Sorry, guess I am just ranting and rambling.
    Terri

  313. julia Avatar
    julia

    Hi Guys……It has been a while since I posted about Jarrod (16yo with advanced AVN from acute injury) but I have had to wrap my mind around our treatment finding trip to San Diego. It was a great trip and I found there is another surgery, extreme, but not a THR. It is called a Chiari Osteotomy. Basically the dead bone is cut away from the hip ball then the pelvis is rotated a bit to accommadate the new shape of the femur ball. It uses the bone that you are left with after removal of nectotic bone and then makes a socket able to fit the new shape. You so lose some height as the dead bone is shaved away and there is a chance of a slight limp after recoup. The worse is the body cast to allow for healing without movement but after the cast is off you are good to go and can live your life like before. The operation can draw out the need for a THR for many years, maybe 10-20, although there is always the rish that the operation will not work as long but it gives the patient the ability to hold off getting the THR that in my son’s case at the age of 16 will have more than one THR. The doctor said that this Chiari can be converted to a THR although the shift in the pelvis give the THR doc a different socket to work with but not impossible.

    I was so excited to hear that there was another option using ,y son’s own bone to get him weight bearing again and to know that hw could put off the THR for many years. Jarrod was like sign me up:)…this Chiari was optioned to us ny Dr. Wenger at Rady Childrens Hospital, San Diego. After that visit we went to Dr. Bugbee at Scripps Memorial who concurred with Dr. Wenger and thought it was brilliant and was shaming himself for not thinking of the Chiari himself. He felt that it would be a success for my boy.

    Now comes the but just hold on a minute moment, the following day we went to see Dr. Santore at Sharp Memorial in san Diego. He was completly against the procedure for my son. He thought Jarrod’s chance of success was not worth putting him though the operation when he could just go straight to the THR and get on with his life. Jarrod’s AVN is about as bad as one can be so trying an operation to be a maybe was not a risk this doctor felt was worth it. Dr. Santore also stated that even though he highly respected Dr. Wenger, he reminded me that he is a pediatric doctor and never would he be the one to convert this operation to a total hip so he doesn’t know how how it can be with the shift of the pelvis.

    So, we are back to square one. Our son’s local surgeon tried to fix him so hard that he missed the mark of when the AVN was getting worse at the time when we could have opted for different operations. I.E. compression, grafting, stem cell….but now we are left with only two; leave it alone and walk or limp or crutch on the hip as long as you can or get a THR. We are going for the THR….at 16 years old, unbelievable!

    We have two doctors in our area that we are gong to see,(For anyone from Seattle let me know if you know about these docs), Dr. Teeny at Lake Ortopedics and Dr. Crutcher at Sweedish. Again we are in the waiting mode but one thing had happened is all the doctors agree that walking on his hip is not going to make it worse so he might as well walk on it. Jarrod tries, but it looks more like a screwed up bunny hop:) He hadn’t walk in so long his muscles have recoiled and trying to get them to stretch out and walk is not easy. He tells me now that he is having “discomfort” daily so I know that he can walk on it for a short time but that the statement of “go until you can no longer stand it” is almost upon us.

    So fellow AVN’ers or parents of one, I will let you know when we do what we do and which surgeon gets the opportunity to operate on my son. I hope all is well and I do read all the posts. Its gets to be overwhelming at times so I pretend that life is normal and ignore all the social media avenues available to me and just remember when………..****sigh*********

    Julia

  314. Brad and Kim Avatar
    Brad and Kim

    @Julia – I wish I could give you a big hug. I am sorry Jarrod is having to go through this terrible ordeal at at 16. I imagine THR are progessing and improving greatly and will continue to improve. Should Jarrod need a second THR hopefully science will have advanced so far that it will last. I hope he is moving and building those muscles back really soon.

    We are taking Blake to Texas Scottish Rite in Houston in a few weeks to visit Dr. Harry Kim. Dr. Kim works with kids who suffer from Legg-Calve-Perthes disease (AVN in the femoral heads, ideopathic). I would be glad to ask him if he has any suggestions for Jarrod and what he recommends if you’d like.

    I think of you and Jarrod often…sending you love and support…

  315. Easa Nourouzee Avatar
    Easa Nourouzee

    Julia,

    I did see Dr. Crutcher at Swedish a few times. I heard good things about him from a lot of people but I was disappointed once I met him. He had the same approach as everyone else.

    However, I don’t want to discredit him or persuade you not to go. I think you should go see him because every AVN case is different. I wasn’t happy with what he said for me because he left me with 3 options: core decompression, bone grafting, or THR. This really frustrated me once I found out about the stem cell procedure. I told him about the procedure once I learned about it and he said he had never heard of it. I kind of find that hard to believe…..

  316. julia Avatar
    julia

    @Easa….thanks for the info. I also had the dreaded feeling of same old same old from all the doctors, giving just the ol’ adage of THR. I think these docs have all got the THR in their brain as the newest best surgery out there and forgot about what it is to be a patient facing such a huge decision with so few options to choose from to be able to walk again. I think in general most docs are well meaning and really want to help their patients to have a better life. Unfortunatley I have found through this process that the orthopedic surgeons have so much arrogance about them that what they say is the ONLY way for you to go. Mostly none are willing to find other options even when it is something that they would not do or really do not know much about it. To not smirk at you when you mention grafting or stem cell and then try to “sell” you out of making different choices.

    I have learned a lot through this and even though the choice for my son is to get a new hip, not a choice I would ever want to make for a 16 year old, but make it anyway, I am determined to make this surgery option the best for my boy as I can. I no longer will see a doctor that my son does not like, nor will I ever stay with a doctor who pisses me off so much I want to strangle him. I will not choose a doctor just because someone else lovessss them, I will not pick a doctor out of the phone book because I am desparate to find anyone to help my kid!

    I will find and interview as many doctors as it takes to have a cohesive mix of intelligence, experience, friendliness, caring and concern and most important for my son….he has to like and trust him. So I may be looking for a while but I do believe I will find just the right person.

    I really appreciate your information and support and am so happy that you are doing well. I just love that this precedure worked for you and wish you many many years of pain free hip(s)!!

    Take Care and as always, will let you know how things are going.

    Julia

  317. sara Avatar
    sara

    Thank you so much for your website and blog. My husband is 37 and diagnosed with AVN and we have no insurance. We have been to several dr but they will not see us or treat the condition or even give us any prognosis. I contacted Dr Einhorn’s office to day and they said to send them our X-rays and MRI’s and would look at them for us. I have hope maybe again. Oh yea my husband is self-employed and it is hard to take sometimes. Once again thank you for some support.

Leave a Reply