Avascular necrosis in multiple joints anyone?

After over 3 years of pain I was recently diagnosed with avascular necrosis in both hips and both knees. I've looked all over the Internet to find someone with a similar problem but in vain. Apparently this doesn't happen in more than one or two joints.

Why i have this problem is still a mystery to doctors. The usual factors like steroids, alcohol abuse, coagulopathies and some rheumatological conditions have been ruled out. Docs have advised me core decompression surgery based on the current stage of the disease. But that may or may not work. They can either operate on one joint at a time or at the most one limb at a time. They could even go for all joints at the same time but then that would leave me completely bedridden for upto 6 weeks coz you're not even supposed to stand afterwards.

If someone has this or knows someone else who has something like this I'd love to know what treatment option they went with and what the results were. I'm very confused especially since most likely core decompression may not work and then I'd be headed towards multiple joint replacements.

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I have AVN in both hips, both shoulders, Right Tibia, 7th Rib. I am only 45 years old. Have had both Hips totally replaced and the left shoulder replaced so far.

You are not alone.

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Hi John, thanks for replying. I forgot to mention earlier that I'm 24 so its really rare for my age.
Were the doctors able to find a cause for your AVN? Or is it idiopathic? What stage did they catch it? And by how much time did the core decompression delay the replacement? I'm sorry that's a lot of questions. But all doctors so far seem really lost about it.

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Cause is unknown. Stage 4. Too late for Core Decompression...went straight to replacement. That was my decision. I put off the surgeries as long as I could to continue working.

I dont mind the questions. Just dont kno if I have all the answers???

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I was hit recently with avn of right hip and both shoulders. My case is a little different as I have also had full blown AIDS since 1995. I have only been in san Francisco for three years and have been spent the last 8 months in the hospital. Actually at Laguna Honda. It would be wonderful to know there is someone who is also going thru what I am going thru. I feel so alone. I have been using meditation. Anyway hang in there. Aloha

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I have multifocal avn in all most every bone. I am 37 and hiv positive. I have had both hips replaced and the pain was instantly gone they said however with the knees even replaceing them would not stop all of the pain. I just had decorcompresion on my shoulders, my advise is always research what your doc tells you if you don't agree then find another doctor, i have gone through three so far meet with a specialist in L.A. on the 19th who is suppose to look at the whole picture, thier is also a great support group on facebook called avascular necrosis.

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Hi I was diagnosed with multiple joint AVN of both shoulders and both hips. If you are in the early stages, I recommend you have all images forwarded to Dr. Thomas Einhorn in Boston, MA. He operated on me and offers core decompression with stem cell therapy which increases the prognosis and reversal of AVN dramatically. He did my left hip about 1 month ago. my right hip has undergone replacements. I had regular core decompression done on both shoulders as from what I understand Dr. Einhorn usually does knees and hips. I would look him up. He practices at Boston Medical Center. Some insurances do cover the procedure and the neighboring Hampton Inn hotel offers a discount rate of 149 per night for patients who are post op. I was there a total of 5 days for 1 joint and each surgery is usually outpatient. Hope that helps.

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Hi,

I was reading the posts about this condition so I hope you don't mind me writing to you as you must have a lot of detailed information. I was wondering if I might have this condition. I have muscle disease that has only just been diagnosed after 30 years ... I live in the UK, what else can I say!
It has caused a lot of damage. After nearly 2 years of complete bed rest (and steroids) which I was unable to do before, the muscles have improved somewhat but the bone pain I have had for years has not. It is mainly in my hips, ribs, spine and shoulders. I was told many years ago in my twenties by a doctor that I had Chostochondritis due to the pain in my ribs but he seemed to ignore the rest of me!

I don't know how to approach this really, or my GP, who is not very helpful in asking for the sort of tests that I need. I think I will have to try and get some tests done privately as it seems to be the only way to go forward ... due to budget cuts on the NHS it is impossible to get much help at all. It seems to make sense to me that if I had necrosis in my muscles that it may have happened to my bones as well. I'm sick of taking so many painkillers that's for sure.

I wondered what tests you had to confirm it, if it was a bone scan was it a three phase one or did blood results show anything?

Many thanks for your help,

Sarah x

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Hi SarahCharlotte

I see on your profile that the muscle disease you're referring to is Polymyositis. This disease hasn't as such been linked directly to osteonecrosis in any of the literature that I've come across. However, corticosteroid use is one of the most common causes for developing AVN, most commonly in the hip joint but also possibly in others.

MRI is the best way to diagnose AVN as well as to determine the extent of the damage. But a bone scan is a better option if you want to cover the entire body (since you complain of pain in multiple joints) as it highlights all areas where you may have bone related problems. Later on in the disease even X Rays can show changes so maybe you could go for those if you've had joint pain for a very long time. There is no blood test for AVN.

Please feel free to ask anything else you want to about AVN. I've read pretty much everything there is to read on it and would love to help you in any way i can.

Cheers...

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CoCoQ -
At 40 years old, I was diagnosed with AVN in both hips. Like you, hard to point to a specific reason, but they have two theories: 1) was in a major accident where I hurt both hips in my early 20s so it may have developed as a result or 2) for whatever reason, in some people who have suffered a brain injury, it develops later but that may be coincidental.

My advice would be to stick to the core decompression and avoid replacement as long as you can. The AVN has shown to no longer be active in one of my hips (something to celebrate!) and I don't plan on doing anything else with it. But I got my other hip replaced in December when the decompression failed and pain was out of hand and it has been an ordeal. I really wish I had held out longer or had tried stem cell therapy.

If the AVN becomes active again in the other hip, I'll definitely go do the stem cell path before even considering another replacement. Most people swear by the replacements, but evidently I'm in that 2-5% where it doesn't go well. After six months at only age 43, I'm still using a cane. This is not how I pictured my life, which just 3 years ago was an avid skier, golfer, racquetball player, etc.

Best to you in your research and recovery ...
Becky

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Hi CocoQ,

Thanks very much for your reply and the info. I want to get a bone scan but I think I will have to pay for this privately. Doctors haven't been very helpful and have been quite dismissive when I have offered my theories on what I thought was going on. This was true for my muscle disorder as well, to get anywhere I had to actually make a formal complaint to the Hospital Trust to get the tests I needed, importantly the muscle biopsy. I said I thought I had an inflammatory myopathy and it turned out I was right - well as near as damn it. It turns out now that my tissue biopsy was requested from London Institute of Neurology (where I had to push hard to get a referral), that my muscle condition is now actually eosinophillic myositis or it could be a calpain muscular dystrophy (limb girdle) or both. Why do certain doctors never listen but just dismiss you and make you feel like you are going half insane?! I was told I had M.E. then Fibromyalgia and Chronic Fatigue (not that I've heard any of these cause muscle destruction, liver and kidney damage!)
It's been so soul destroying as I've had to bring my daughter up with all this who thankfully is now twenty-five and has been through university and is working hard and doing well now which is so much of a relief I can't tell you.

Sorry, this is a long rant! I think it's all had quite a traumatic effect on me which is hard to put behind me. I still get haunted by flashbacks of being so weak and ill when I was young crawling around on the floor and not being able to get up when she was a baby and no one being there to help and it going on for so long with no end in sight.

If I ask for a bone scan do I need a 3 phase one with spect? There are different ones showing different things, I want to make sure I get it right.

You are so young as well, it seems so unfair to get so ill so young but it sounds like you have a good doctors so at least that is something. Do you have anyone at home or are you on your own?

Thanks for your support and hope you are not doing too badly today.

Sarah x
It's taken me thirty years to get a diagnosis. Now finally someone in my local hospital is taking an interest after seeing my biopsy and it may be eosinophillic myalgia syndrome as well because I have always been in so much severe pain with it.
Because I have so much bone pain, it made me think that because of the same way the muscle tissues were destroyed, ie, by a cut off of the blood supply to the tissues, due to the inflamed blood vessels and swelling then it makes sense to me that if oxygen wasn't getting to the bones as well due to a lack of blood supply then the necrosis which had happened in the muscle tissues could have happened in the bone. I will put this to the next doctor when I see him but I doubt if he will listen! I have to wait about two months as the waiting lists are so long on the NHS. The Neuromuscular clinic was worse - I had to wait 6 months, then another 6 months for the follow up and I've still not been put on the medication he requested in December ... steroids and Imuran. I've only had two short courses of steroids which have gone no real way to treating the problem. It's very depressing.
I have to sell my house now as I haven't been able to work since the last major relapse more than two years ago and I was seriously thinking about using some of the money from the sale of my house to go to America and get some decent care

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It has been a long since I have been online. Problems with computer and me. If you are still willing to exchange stories, support, and general help in making it through this horrible disease. three weeks ago I had a right girdle stone procedure and learned that not only do I have avn in right hip and both shoulders but also my left hip. I have been in hospital for around 10 months and have no idea how long I will be here. Please write me a line or two to remind me there's life beyond avascular necrosis.

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@Becky - I feel terrible to hear that a procedure like total hip replacement which has come so far still didn't work out for you especially since you're only 43. I mean to think of the probability of that happening must be frustrating as it is! It's true that core decompression with stem cell transplant seems to have worked in a lot of people that I've come across. But as it turns out that I have a couple of blood clotting disorders that make this procedure risky due to the possibility of deep vein thrombosis and pulmonary embolism. These blood clotting disorders also seem like the only possible cause behind my multifocal AVN as everything else has been ruled out and these have been known to cause clots in the vessels supplying blood to bones. Dr. Charles Glueck at the Jewish Hospital, Cincinnati was a great help in determining that. So since two weeks ago I've been taking blood thinners in the hope that the AVN won't progress any further than stage 2 and maybe it could reverse itself. The reversal bit is for the most part speculation.

What do doctors think is the reason behind the bad outcome of your hip replacement? Can't anything be done about it?


@Sarah - Thank you for your concern..I really appreciate it. For a while I was on my own but that started to get way too painful so I ended up moving back in with my parents. At first they neither understood nor believed me but I think they're coming around now, especially mom, so I've very thankful for that. I can't tell you how horrible it feels to be dependent on your parents at my age and unable to have a normal work and social life.

I'm not sure what the bone scan I had is called exactly. But i remember that I was injected with the radioactive dye and then the scan began 4 hours after that and lasted for about 30 mins. Hope that helps. Do keep me posted on what happens next and all the best with your struggle for a diagnosis and ultimate recovery. :-)

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@sezic37 - I can't even begin to imagine what you must be going through, what with another joint affected by AVN and all the other issues you have been facing for so long now. It makes me very sad to hear that you've been in a hospital for such a long time. I know what it's like to be stuck in a room since that's what the majority of days are like for me. The only outings I seem to have these days are medical in nature, doctor's visits, tests and so on.

My shoulders have been bothering me for some time now but I haven't really got them checked out since the treatment plan would remain the same (i.e. blood thinners). However, I'm beginning to think that the AVN has started to affect them as well. I'm definitely not looking forward to the shoulder MRI.

For the past many days I've been in a very dark place. Everything seems so meaningless. Even the little things friends and family say as harmless jokes start to hurt so bad that I can barely control my anger and frustration. I am lonelier than I have ever been especially because I'm just not able to foresee my situation improving. However, I've fallen and got back up a few times in my life and from that I know that maybe I will be able to get out of this bad phase too. It is terribly challenging to watch others around you move on with their lives, have actual careers, achieve their goals and have normal social lives. I often find myself envious of nearly everybody and even forget to be happy for my loved ones if they're doing well.

So many things have had to change since I fell sick. Most of my interests were physical in nature esp. dancing. But naturally the focus is now on all things possible while sitting or lying down. Of all the sedentary hobbies that I've taken up, the most beneficial one has been to "find new interests for myself". For example, I've never really been into X-Men but I decided to give it a try and watch all the movies. Needless to say, I instantly fell in love. Now I'm gonna read all X-Men comics ever written and I'm really looking forward to that. I know it seems trivial and it's probably nothing but what I'm trying to say is that maybe sometimes all we can do is take each day as it comes. Find something to do that interests and excites us and gives us a reason to keep moving on. Move on towards what? I still don't know that. Here's hoping together we can motivate one another. Keep me posted about your thoughts and your recovery. I've added you as a friend so you can even send me a personal message if you like. :-)

Cheers...

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CocoQ - Thanks for the comments and empathizing with such a horrible hip replacement. I have since found a new surgeon and he has pinpointed a couple of things. I have trochanteric bursitis as a result. Got an injection Thursday and that is helping tremendously. The other problem is that the iliopsoas muscle and tendon are strained. His assessment is that the surgeon cut too small of an incision. We never discussed my desire to have as small an incision as possible - I'm not a vain person. But maybe given my age and gender, he thought he was doing me a favor.

The new surgeon thinks that with the amount of bone they cut out and the size of the material that went in that the tissues were overly strained and that there was extreme trauma to fit everything in. They are doing a groin injection at the hospital on Tuesday and if that doesn't bring additional relief, they will go back in and sever the iliopsoas tendon and it will eventually reattach.

Although my family thinks this sounds extreme and painful, I'm just thankful to have a new direction and an explanation that finally makes sense!! Onward and upward ...

Cheers,
Becky
www.bdbrainwreck.com

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Obviously you're not alone. I have avn in 4 joints bilaterally, and that's just the joints that have been MRI'd. I have pain in the rest of my joints as well, along with rheumatoid arthritis. I've had a shoulder resurfaced and a hip replaced. I'm almost to the point where working isn't going to be an option anymore. For everyone else who suffers from this and feel like their lives are slipping away from them you are not alone. One day at a time...

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Hi mostlysane72, it's always good to meet others who are going through something similar to what I am. I'm currently undergoing a round of stem cell procedures that have shown great results in others before me. There's pain involved of course, but it's worth it since my AVN may completely disappear if this works especially in the hips. Thankfully, I have a bunch of very supportive family and friends.
How do your hip & shoulder feel after the surgeries? It's incredible that you're still working after all this. Thanks for your support and making me feel that I'm not alone!

Hugs...

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Becky, it's wonderful to hear that your hip replacement will improve your quality of life after all. The other problems seem fixable and probably have been taken care of by now. Let me know if there's a change since the last time you posted here. I'm really sorry for not replying sooner but I've been a little caught up with searching for and then finding a great stem cell treatment close to where I live. I should be able to feel the results by next month. Will be posting the same here.

Take care and keep me posted.
Hugs...

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my surgeries went well, but I have some scarring in my shoulder which causes me some pain. my hip is still healing, but it's getting better. it would be stronger were I able to exercise it like I should, but the pain in my knees and ankles keep me from them. the stem cell sounds intriguing...keep me updated on that if you would and let me know how you're doing with it :)

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I have hips, knees, a shoulder with AVN supposedly from 3 weeks of prednisone. I never accepted that much damage could happen so quickly from prednisone. I have a link posted below that discusses clotting disorders. I have a very high factor VIII clotting disorder and do not know how to bring it down. If anyone has done so, please share how you did it.

http://rheumatology.oxfordjournals.org/content/52/2/235.short

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