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 ollett@gmail.com 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!

  • 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!

  • 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!

  • 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.

  • 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!

  • 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

  • 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.

  • 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

  • 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

  • Kim and brad

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

  • 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

    • http://www.lukeollett.com Luke

      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.

  • 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.

  • 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

  • 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

  • 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

  • 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…

  • 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…..

  • 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

  • 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.