Osteonecrosis or Avascular Necrosis (AVN)

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.

UPDATE

To make discussion on this topic easier, we have started a support forum at http://bonedeath.ourthursday.com/ so please sign up and participate away. If the forum is missing anything, let me know!

Be Sociable, Share!
  • 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

  • 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!

  • 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?

  • 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

  • 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

  • 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 :)

  • Moe

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

  • 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.

  • 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!

  • 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!

  • 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

  • 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.

  • 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

  • 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

  • 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 :)

  • 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?

  • Moe

    That link is wrong w/ the “)” at the end – try http://www.wmt.com/prodense/surgical_techniques_adv_core_decompression.asp

  • 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!!!

  • 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.

  • 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

  • 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

  • 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.

  • 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

  • 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!!!

  • 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.

  • 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

  • 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

  • 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.

  • 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.

  • 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.

  • 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

  • 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.

  • 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!!!

  • 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

  • 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!

  • 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.

  • 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

  • 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 :)

  • 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.

  • 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 :)

  • 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.

  • 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

  • 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….. :)

  • 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…

  • 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.

  • 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.

  • sandy halbert

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

  • 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.

  • 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

  • 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!