Your Story

Feel free to write about your journey with ON/AVN. Share experiences with your doctors, how you came to be diagnosed and what treatment you have received, if any.

 

Note: Many people may comment on treatment they are receiving. Never take any medication or supplement without being under the care and guidance of a doctor.

560 thoughts on “Your Story”

    • Hi,
      Am a 62 yr. healthy female. Radiologist just detected avn on an mri. Is there a dr. in Louisville, KY that specializes in avn?
      What’s my next step?

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      • Im from India Manipur Avascular necrosis avn is not a disease nor a sin it’s a simple twist nerve and block blood pass through bone that cause a big trouble made a man half dead actually happen to a me
        I been operated and cure from avn on his right thight after 1 year left thight start with the same case avn same doctors warn to not move needed operation just like the past I was very shock bt luckily got a man local physician without any medicine without Any operation in 20 days avn completely gone begin to normal life if anyone has avn pliz inform me I will help you my email naothoi000@gmail.com

    • Hello in i think the last stages of avascular necrosis. Would like to know what the pain is like. And anyone is like mine. Sometimes I can walk and sometimes I can not, which leads my family to think I am lazy. Really hurts that no one really this is real. Even though I have MRIs, Cat scans and xrays to prove it. Pain started in mid 2013. And what exstream do you go to do away with the pain from self meds to sleep which does not work cause that to can be very painful. Thanks Belinda Lemen ,,,,,,,,,,,,,,belindalemen@gmail.com

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      • Belinda, Both my ankles were totally collapsedd and I’d have periods of NO pain followed by days of tons of pain. I tried everything from unweightening boot to bone growth stimulation to braces and finally wore the Arizona brace which was the best. Though there came a time when nothing helped the pain. That was when I chose to replace one ankle and I saw Dr. Haddad outside of Chicago) and he replaced my ankle with an INBONE II after taking tons of photos, x-rays, videos. What an expereience. https://ryortho.com/2013/10/the-top-26-foot-ankle-surgeons-in-north-america/

      • Thank you for your feedback. I live in Corpus Christi and although we are growing rapidly we still are not as advanced as larger cities. I will review the website for sure. Have your ankles healed from the surgery itself. Usually foot and anklebone have trouble healing. Has your osteonecrosis felt like it was moving to different areas of your body. Pain last anywhere from a week to 3 months then settles a while then returns. Inbetween times are usually short. Or could this pain be more from the psoriasis/rhuematoid arthritis.

      • Still getting broken bones in feet and fractures in the ankle with numbness and tingling to the right knee where I also have the osteonecrosis. I have found that flexoril muscle relaxer and ibuprofen has helped the most in keeping the pain under control. My ankles and feet get all distorted if I don’t take the muscle relaxer. I am down to taking the muscle relaxer only 10mg once at night and the ibuprofen 2x a day.

      • Also with the ankles don’t soak them in water for long periods of times (baths or pools) I was doing physical therapy aquatics and actually caused a break in my foot. I am assuming that the muscles became too relaxed and I wasn’t aware of this and turned to grab my autistic grandson and my foot twisted off of my sample. The doctor stopped the physical therapy right away.

      • See a rheumatologist. Get remicade infusion. Mine started in 2008 in my ankles where is yours located. If you are on steroids talk to your doctor about stopping them. It causes more harm. Muscle relaxer (flexeril helped me best) and ibuprofen for antiinflamatory. Depending on where yours is located could depend on surgery you need.

      • Is the disease crippling? Heck, when I was first diagnosed with it it was crippling. That is not to say that it foesn’t impact my life today, but I’m better able to manage the side effectsl ‘It’ has been quiescent for some time, but it CAN be fruisnating.

        Foot ankle surgery is still in its infacny, but it is growing by ‘leaps and bounds’ and there are always options. They are fewer when you ‘void the warranty’ so stick to the list that is in Yahoo’s Database

        There are many more that weren’t on the list who are good, but start with the list members and see that they are a memeber of the AAFAOS (American Academy of Foot and Ankle Orthopedic Surgeons). Annie Good luck.

  2. Anotheperson who does it, used to work with Dr. Mont when Dr. Mont, who is now at Cleveland Clinc, was at Lifebridge Health, is Dr. Bradley Lamm. Mont and his colleagues did the hips and knees and Dr. Lamm did the ankles. I asked him what he could do for mine and he said to send him my films.

    He called me back after he’d seen my films and said that what he’d propose for my osteonecrosis was to do a CD, but in the cores he’d put bone growth hormone, bone morphongenic protein (maybe their the same) and then bone cement, I think. He would need to put the cement in the cores for stability of the bone.

    He’d also do some joint distraction. His name is Dr. Bradley Lamm, he’s in the Baltimore area.

    Annie

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    • Thank you for your response. I will look into this. For the most part the pain is under control but I think it’s just that my tolerance to pain is higher now. Still getting broken bones in feet and fractures in the ankle with numbness and tingling to the right knee where I also have the osteonecrosis. I have found that flexoril muscle relaxer and ibuprofen has helped the most in keeping the pain under control. My ankles and feet get all distorted if I don’t take the muscle relaxer. Has this also happened to you?

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  3. Hello. I want to tell my story for everybody. I am 41 years old. I was diagnosed with AVN of the right hip 4 years ago. I was at stage 4, in need of a hip replacement at a young age. I met a wonderful doctor in St. Louis who decided to take a chance on an experimental procedure. I received a core decompression with stem cells in July of 2014. In October of 2014, I received a PRP treatment. I began physical therapy on my own, and began an intense nutrition and supplement diet. In July of 2015, I once again had the core decompression and stem cell procedure. I continue the supplements and daily exercise program. Today, 10/3/16, I still have not had to get a THR. I encourage anybody with this terrible disease to write me at wildbillsboxing@gmail.com I would be glad to discuss my ongoing management of this horrendous disease. God bless each and every one of you.

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  4. Good for you. I remember when I first was told that I had necrosis of my right hip and was told nothing could be done short of a hip replacement. I was especially taken aback when the doc said they didn’t know the cause…”it just happens”.

    Limping around in pain with a cane was really scary. I ended up fixing the problem myself (that was 15 years ago), and it has not returned (thank goodness). My fix involved use of high frequency mechanical stimulation of the affected area. My take was that it broke up whatever was clogging the capillary blood flow into/out of the joint, thereby allowing the joint to fully recover.

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  5. I haven’t AV in my right hip and left hip, I”ve made up my mind I’m having a hip replacement. Studies show that within six months it starts to slip again. I go to the VA and they did nothing for 6 months. I’m not having the decompression because I have osteoporosis, so drilling whole in my femoral head I believe it’s going to fracture. Can I sue the doctors for not telling me I had avascalar necrosis and they knew and didn’t tell me. They gave me a misdiagnoses they said it was my spine after I left to go the doctor can and said he found the disc and I have AVN. Then I went back for a follow up appointment I was told tha it was bilateral. Now the both have to be done, as I said no decompression for me because I’m afraid of the fact that I have osteoporosis what recourse do I have please help Spenser Brown.

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  6. Hi! New here. Looking to see if there’s anyone here from or near MT?? I had a THR due to advanced AVN 2 years ago and both my shoulders are now dropping cartilage, One OS told me it was “likely AVN” and then should expect a shoulder replacement in the next ten years (I’m quite sure it will be sooner just due to the pain) and after a phone call between my gen doc and the director of this orthopedic clinic, I was told I don’t have AVN, it’s just a typical shoulder (both?!!) impingement and I won’t need surgery. I also have pain at rest in both and my elbow is hurting at rest as well. I don’t feel right about this and I’m concerned I have multifocal.. My risk factors are fairy obvious; I’m a recovering alcoholic and was out on steroids for several weeks after my last liver failure (2011). I’m sober now and have a 3 year old daughter and teach ballet and Pilates. My gut is telling me to find an expert and hopefully seek some stem cell or BMP(?) treatment. I onlyhave Medicaid. But it’s paid for all of my MRI’s and my hip replacement so fingers crossed. Does anyone know where I should start? Do I request an appointment at Mayo? Hospital for special surgery? Which one? With who? Thanks in advance for any feedback!

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  7. If the Rheumtaologist has said that the bone really is dead and there is no bone marrow left in the necrotic lesion even if i do find out the underlying blood disorder cause then is it still not treatable with medicine?

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  8. Hey, im 22 yrs old and im suffering from AVN from 3 years and it is stage 4, im on medicines like alendronate sodium and calcium tablets. My orthopaedic surgeon doesnt recommend surgery at this little age. And even i dont want any surgery, i want to know that with having this problem, pregnancy is possible?, bcz it is an age of marriage and childs. Please help me by replying. Thank you so much

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    • Yes pregnancy have no issues. Because I am also going through the same problem. I am 30 year old. And a mother of 3.2 year girl child. But as the weight increase…. The complications will increase. But it doesn’t have any problem with pregnancy.

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    • Hi Alesha,

      I was diagnosed with AVN Dec 2016 my ortho surgeon (OS) was also did not recommended me THR because my young age and also my AVN was still stage 2. He asked me to have 30 sessions of Hyperbaric Oxigen therapy (plus calcium and supplement for joint), it does help…. The pain is now significantly reduced but it is not completely gone. I am at the point where I think I can handle pain so I did not take the pin medicatio anymore. I OS said if the pain is still improving (reducing) he suggested me to continue the HBOT. Btw my my AVN was caused by steroid from my past cancer treatments back in 2015.

      What about you, are you feeling better now? What did you doc suggest?

      Regards,
      Prabu

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      • Hi, I’m just wondering how do you feel after HBOT TREATMENT, did it helps to tread avn, how many HBOT sessions did you get in total and if you avoided joint replacement, thanks

    • Pregnancy is POSSIBLE, but depending on the cause, it isn’t adviseable in all cases. If you have something called antiphospholipid syndrome, from an autoimmune disease, a clot can form in the placenta and place you at a high risk for misscarriages. Pregnancy is DEFINITELY possible but you may be considered a high risk pregnancy if youhave APS. Tell your gyne UPFRONT

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  9. I was diagnosed with Avascular necrosis of the left hip at the age of 17. In 2011 if I’m remembering correctly. I remember when my symptoms started because the very first time I felt any type of pain was when it fractured. I stood up on the school bus to go into the school and I felt a pop and was instantly in excruciating pain. I sat back down and waited until the pain subsided enough for me to stand up and I limped all day in excruciating pain to the point of tears. I had never pulled a muscle so I assumed I had just pulled my thigh or groin muscle and tried my best to push it aside. The pain subsided over night or after long periods of rest but if I sat or rested for a bit then stood back up the pain would be excruciating. The pain came back every few days and it got to the point where I’d have to sit on my bed at night with a heating pad and beg my mom to help me. The pain was mostly in the groin area and I was sure I was just re hurting my pulled muscle or ligament. After many ER visits my mother and father were growing tired of hearing it was probably just a hurt muscle. Even X-rays weren’t showing anything. My father thought I was making the pain up for attention but my mother believed me. She was the only one. Finally after a 5th or 6th ER visit I was referred to a bone specialist. I didn’t think anything would be found because everybody had already done X-rays so what more could a bone dr do? The doctor left the room and I had more X-rays done. I sat in the patient room for awhile joking with my mom and was shocked when the doctor told us we had an appointment with the hospital for an mri. My mother knew something was up because she was a a registered nurse who happened to work at the same hospital. So she asked the dr why I needed an MRI and he quickly replied that he’d rather be 100% sure before making a diagnosis. My mother was mad and at this point I’m realizing something must have shown up. A million things were running through my head. My mother waited until he left and then she stuck her head out of the door and listened as the bone dr spoke into a recorder. She quickly came back and we gathered out stuff and left. In about 3 minutes we were parked outside the hospital and she was going up to the floor she worked on. After waiting for about 10 minutes she got back in the car and we drove home. I was exhausted and my leg had an awful deep ache in the groin so I laid down for a nap. I was woken up by my younger sisters. Mind you, they were 13 and 13 at the time. Hardly awake, I was drilled with question after question,” why is your bone dieing?””I’m sorry your hip is dead.” I was bombarded and confused. What? I slid out of bed and followed them to a medicine dictionary they had pulled out my mother had written notes about AVN. She had the definition highlighted and I’ll never forget crawling into my sleeping mothers arms and balling like a baby. I cried and asked my mom she just held me until I fell asleep. After the MRI I found myself back in that same bone doctor’s patient room. Only this time I was scared. And 15 minutes after arriving at the doctors office I was officially diagnosed with Avascular Necrosis of the left hip. Apparently once it to a bad enough point it will finally show up on an X-ray but much like a stress fracture it won’t show up early. The first surgery we tried was bone decompression. The surgery left me in more pain and wheelchair ridden. And in my senior year of high school I was a laughing stock. The surgery failed to have any good results and the next surgery was done to take out the hardware that had been placed in my leg and it wasn’t until 3 years after my initial diagnosis that I finally received my total hip replacement. After 3 drug induced depressed years I’ve finally got my life back. I was also diagnosed with a gene mutation that caused a blood clot which cut off the blood supply to my hip causing the bone to die. I’m now 23 and still pain free one of my legs is very slightly longer than the other and occasionally I get knee pains from walking weird for years.

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  10. Dr Gleuk no longer practices. I was referred to Dr. Naila Goldenbueg of Mason Ohio who worked closely with him. She has done the whole lab work up with me. She is very knowledgeable in this area. Highly recommend her if you are in the Southwest Ohio region. Still a few labs pending, plus I still need to have my E-nos blood work drawn. Hoping to find answers for my AVN (left knee). On another note, I have had a terrible time finding an orthopedic surgeon who is experienced with osteonecrosis (a handful of surgeries doesn’t count). I am in need of my third surgery now and the one surgeon in Cincinnati who specialized in this has also retired. If anyone has any recommendations I would greatly appreciate it. Preferably a surgeon in Cincinnati or Cleveland area. I would consider NC (Duke) or NY but would really like to not have to travel that far. Thanks.

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  11. Just want to shout out to the organizer of this website and to everyone for posting. All other searches have come up empty handed for me. I have found so many helpful leads on this website. A patient of Dr. Michael Mont posted that he (Dr Mont) had recently moved to Cleveland. That’s only three hours from me and I looked him up and he sounds like a great fit for a surgeon who knows AVN in depth. He is the new chair of orthopedic surgery at Cleveland clinic. Will share feedback after my first appointment with him in late February.

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    • I definitely agree with Heather. I’ve been hunting & pecking on the internet to find EXPERIENCED physicians who can help me manage and slow down this disease. Spending time on this site, just going through all the posts has helped me a great deal, no-to-mention, the feeling I’m not alone with this issue.

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    • I’m curious about the type of surgeries available for osteonecrosis AVN. Mine is in my feet and ankles. Do you have any information on possible surgery that might help

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      • My doctor here in Corpus Christi told me surgery could possibly make things worse on my feet and ankles. Getting off the steroids except for emergency needs with the remicade methotrexate muscle relaxers and ibuprofen have been the best help. I’m down toiscle relaxer just at night and no longer need remicade or methotrexate. Mine would get worse during my mental cycle. But with my hysterectomy a few years ago my symptoms are only sporadic. There are doctors who do surgery. But my first thing would be to get with a rheumatologist and see what they can do. Also my symptoms would get worse if I slept anyway except flat. Not with seversl pillows in a recliner or somewhere I could not stretch out completely.

      • Leah, it hurts just hearing your descritption. Autoimmunity is a funny thing, but often it requires steroids and oftern people develop ON because of those steroids or the other things that can cause ON.

        I can’t speak to wrists, but I have ON in my ankles (other jobs and bones, too), but simeilarity is in ankles. The surrgeries I’m aware of that exists for ankles anr a total ankle replacement (TAR, TAA), an ankle fusion, and I draw a blank at other surgeries for treatment. Many times debreidement and crdecompression are done, but I don’t thin CD are that effective in treating the cause of ON; rather it trieats the pain

        The treatment that I had was a total ankle replacement. But what is good for the goose is not always good for the gander. There is a list that I’d like you to look at and see if any of these guys or gals is near you. Anyone you see should beong to the Amerocan Academy of Foot Ankle Orthopedic Surgeons (AAFAOS).

        The website: https://ryortho.com/2013/10/the-top-26-foot-ankle-surgeons-in-north-america/

      • Thank you for this information about your ankle surgery. Do you have any problems after surgery? I’m now thinking this might be an option

  12. I was diagnosed with AVN in my right femur – the ball near the knee in July. I was put on crutches- 0 weight for 3 months. after 1 day the excruciating pain was gone. The orthopoedist thought it was going so well that I tried walking 1 month later. That was horrible. Within 24 hours I was back on crutches. Basically I spent 4 months on crutches. The first MRI lit up the femur , bottom ball area in the knee, 2nd MRI showed very little and the Dr thought maybe it wasn’t even AVN, but microfractures, but the 3rd MRI was back to being terrible. Then he saw a few areas on my tibia that concerned him so he sent me to a hematologist, thinking it was cancer (Multiple Myoloma). The Hematologist looked at all 3 MRIs, saw that there was 1 dot on the tibia in a different location in the 2nd MRI, and then these 2 new ones on the 3rd MRI. He was confident of no cancer, but I did the battery of tests to be sure. Let me back up too. 13 years ago I was diagnosed with hyperparathyroidism. That leaches calcium from my bones and I have had osteopenia and been on fosimax for a few years and that stopped the decline of bone mass loss. I had mentioned this to the orthopoedist. So I talked to my endocrynologist and he referred me to the best endocrynologists in NYC (I live close by) – Dr Bilizekian (or anyone in his practice -in Columbia Pres). Well it took several calls from me, my endocrynologists and sending documentation to finally get an appointment 2 1/2 months out. So I decided that I would try things slowly, after 4 months on the crutches, and 5 + months with this dibilitating situation… I started walking slowly and carefully. First to the bathroom, then around the house. Stairs are hard. I am careful. I never walk far. I listen to my body. If it hurts I stay home the next day (I am lucky that I run my business from my home). So I have now been 2 months without crutches. Next week I see Dr Cusano (in Dr Bilizekian’s practice). I3 years ago I had a scan on my neck to try to find the parathyroid that was the problem but they couldnt find it . I just had another scan to bring to Dr Cusano to see if she can find the problem now and possibly remove the parathyroid. I am not sure why my bones are not healing but I am hoping that the endocrynologists can find it. I don’t know if i have AVN and it just won’t heal, or something else. Stay tuned. I was very active prior to this, hiking , biking, and I just started swimming. I had found a youtube video for yoga on the floor (non-weight bearing) that has been terrific. This is a long road but I am hopeful and appreciate even the small amount of walking I am doing, vs being on the crutches for so long. Anyone advice greatly appreciated…

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  13. Hi there,

    I had bilateral AVN of the femoral head and had the FVFG done on both sides within 3 months of each other. Both went very well and I healed fine. That was back in 2009 however, I just broke my right foot this passed weekend and now it feels like the fibula is sore again. I’m worried that this will somehow reopen that chapter in my life because I am feeling pains in my hips/legs all over again.

    Thanks,
    Ryan

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  14. Earlier last year (March 2016) I was diagnosed of Avascular Necrosis of both hip. Actually I have been bedridden for more than a year before the diagnosis. my families and friends had done everything in there capacity to bring me back to my feet but all there effort were futile. In accordant to what doctor said, the only way for me get back to my feet is by undergoing surgery. I couldn’t afford the treatment and medication not to talk about the surgery. I really need help

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  15. Hello I’m 30 years old broke my left hip while pregnant didn’t know how walked on my broken hip for a month without knowing what’s wrong with me because the Ob doctor refused to do X-ray. Finally I felt lost my balance went to emergency room then after X-ray they found my Hip broken. Did a surgery after C section it was fixation but also they found out I got necrosis and the shape of the joint changed. My thigh is shorter 1cm than the other. My problem is still limping can’t get rid of the limp. Still doing therapy. I did the surgery one year ago. And my leg still so weak can’t left it. I’m using a cane to walk. It’s so hard especially if have now two kids. Please I need advices especially how can I get rid of limping. Thank you

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  16. Hi if someone out there that could understand what I’ve been going through for the last 5 yrs. I was diagnosed with AVN of the hips 4 yrs ago at the age of 24. I was suffering with severe pain that my ortho had to do bilateral hip replacement in 2015 shortly after I was diagnosed with AVN in 5 other joints that had progressed pretty aggressively. I live with such mind blowing pain everyday there are no words to describe what a nightmare I am living. I am scheduled to get allograft surgery this March on my left knee. Has anyone had this surgery before and what are the results?

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  17. Hi, myself shradha from India. I ancounter AVN when I was just 12 years old. During my annual sports meet I got a minor fracture in my hip joint. I ignored it due to marriage in my home. Then after some days I found that there is a terrible pain in my leg as I walk. I met the first doctor who advised me to take bedrest following by the traction in the leg. Since I was so young, my parents get affaraid of 6 month bedrest. Then the story of cancellation begin. Another Dr took me as the experimental mouse as this case was so rare those days. On 25 feb1999 A major operation took place. The doctor take out a tiny piece of hip bone and send it for further investigation as they have a doubt of bone T B.Between these 4 months I go to the medical process with bedrest and physiotherapy.
    But then till 2013 I live life very normally. But as I got weight on my first pregnancy,I am again leading the same painful life. My legs length got short. So. I have to wear raised heel in one leg. I consult the doctor, they advised me to wait until it got enough to bear daily routine. I am just 30 now. The life span of a joint is 25 TO 30 YEAR’S. My life now is very much terrible. It take 2 minutes before walk to be still at one place. Please suggest me something before hip replacement.

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  18. My name is ryan and I am 29 years old. In 2014 I was diagnosed with leukemia, and spent all of 2014 in hospital beating it. Unfortunately now that I am back to work in my field of commercial heating/ cooling, I am constantly in pain. Visited several doctors, and finally was put in an MRI and found that both knees, and hips, are at the point of total replacement. My specialist dr.chen at the university of MN also had informed me that it is most likely in other joints such as shoulders , ankles, etc. and we will begin to scan those areas as well. I have already had multiple operations to try and rejuvenate growth, and delay replacement, but nothing seems to be working. This condition is horrible, and has officially ruined my career, as I can no longer keep up with the physical demands of my job. And on top of it all it is a very mantally taxing condition, because it seems that the results are inevitable, and there’s really not many options. Definitely am not looking forward to dealing with all of this for the rest of time..

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  19. I have been searching for an answer to pain I have been having in my right hip for the past six plus years. It hurts in my groin mostly. At first the pain would come and go, then it progressively got worse until it was constant. I feel if I try to pivot on my leg, it will buckle and drop me to the floor. So I avoid that at all costs.

    It now hurts even when I am resting, asleep in the middle of the night — it aches. I cannot find a comfortable position. I find that heat seems to dull it a little, so I sleep with a heating pad on my hip.

    Recently, I had an x ray done and the femoral head of my right hip is very irregular in shape and looks quite different than my left, by comparison. When I asked the doctor about it, he said it was an ‘incidental finding’ (perhaps because it is not his hip?) Anyway, he said I would probably need a total hip replacement because of the arthritis also present in my hip. BUT, he said, “Your BMI is way to high for me to consider doing surgery on you.” He proceeded by giving me a brochure for bariatric surgery and said if I lost weight I could avoid having surgery altogether.

    Of course, when I first started with the problem, I was not overweight and could move about freely. I hiked and sailed, we went camping and swimming. I had a full life. I have watched my life literally evaporate before my eyes!

    I am writing to see if anyone has any suggestions, common symptoms or ideas on approaching a physician to have them consider AVN as a diagnosis.

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    • Hi Tabby. I know your story ALL too well! I was diagnosed with AVN in both hips & both shoulders back in 2010. Right shoulder collapsed in 2012 & total replacement was necessary. At that time I was solely dependent on the VA for my medical needs & was told “It’s too far progressed for any decompression treatments”…”When you have ANOTHER blowout, we’ll do replacement surgery”. Fast forward to 2017, hundreds of Pain med prescriptions, roughly 70 additional pounds (of course we are gonna gain weight when it is excruciating just to move around your own home much less exercising or doing activities that we once enjoyed!)…I was able to start seeing an Orthopedic at UF Shands in Jacksonville, FL & find out that my hips are ONLY at stage 2 & I’m a perfect candidate for core decompression! I had my right hip done September 2017 (still in recovery mode) & so far so good. It still hurts, but nothing like it was before. The cold fronts have been doing a number on me lately…that just lets me know that I shouldn’t ever move to a really cold climate! 😂 In a few months I’ll be re-evaluated, to make sure the right hip is still doing ok & we’ll discuss core decompression on the left one. I will most likely still need THR in the future, but the less pain I have NOW makes a lot of difference as far as my activity levels & I can get out there & start losing the #s…as we all know isn’t good at all for these ‘bum hips’. Actually have already dropped a good 20lbs since September!!!
      Try to get a referral to a GOOD Orthopedic Dr. Your primary knows nothing about this awful affliction (for lack of a better word at the moment) & a specialist will be able to help you…no matter how much you weigh. Sounds to me like this Dr you saw us simply an insensitive a*%hole! I realize you commented quite some time ago, but if you (or anyone else) would like to email me…just to have someone to communicate with who KNOWS what you’re going through, my email is tecoop@icloud.com. Don’t lose hope…I haven’t 😉

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      • Hi, if you have another core decompression make sure the doctor uses a SMALL CORE TRACT and replaces with bone marrow aspirate which contain stem cells. The core TRACT should never be more than 4mm wide. They can do 1-3 tracts but don’t let them make a bigger track than 4 mm and make sure they replace with stem cells! I’m 5 years post op from dual core decompression fem heads. Has 3 core tracts each side with 3.5mm trephine (core tool) and bone marrow stem cell replacement. Today my MRI shows both lesions have shrank on order of more than half. I’ve gone from ficat stage Ic and IIb to both hips at a stage Ia. My doctor says do another stem cell only procedure with no core decompression and the lesions will heal completely! That’s what’s next for me. But the main point here is core decompression need to have stem cells ‘re injected and the core TRACT should never exceed 4mm. If your doc uses a huge 8-10 mm core TRACT and no stem cells RUN! He’s clueless and completely antiquated.

  20. Im from India Manipur Avascular necrosis avn is not a disease nor a sin it’s a simple twist nerve and block blood pass through bone that cause a big trouble made a man half dead actually happen to a me
    I been operated and cure from avn on his right thight after 1 year left thight start with the same case avn same doctors warn to not move needed operation just like the past I was very shock bt luckily got a man local physician without any medicine without Any operation in 20 days avn completely gone begin to normal life if anyone has avn pliz inform me I will help you

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  21. I am now 29 I have had avn for 3 years and need a total replacement ASAP. My femoral head on my left side is over 80% deteriorated.

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  22. Hello. My husband, age 50 just diagnosed with bilateral hip AVN. Seeking a doc who will do core decompression in San Diego CA or Los Angeles. Thanks for your help!

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  23. hello im 41 years old and just got diagnosed with avn in my right ankle but believe it is also in my left knee. I can barely walk. ortho will not give me pain meds due to me being steroid dependent. I go for arthroscopic debredment on the 28th. well that is one side of my ankle. the other side he can’t get to with a scope. can you please help me. how bad is the pain after? is this disease crippling? please help

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    • I’m 47 years old and also have AVN/osteonecrosis in both ankles, wrists and left knee. Do to steroid use for 2 yrs when I was diagnosed with asthma. Steroids are the worse thing you can take for this disease and also causes AVN/osteonecrosis. I take 600mg ibuprofen and flexible muscle relaxer. I was on methotrexate for a while and now don’t have to take it anymore. Also remicade from a rheumatologist. And no longer need that either. I haven’t had any surgery. Mine started in January 2008 and wasn’t diagnosed till Feb 2009 after doses and doses of steroids and kept getting worse till Al my joints hurt so bad even my fingers and toes hurt. Now I have flare ups but major ones.

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    • Leah, I left a message earlier, but I’m still stumped by the ‘steroid dependent’ thing. What? He won’t give you pain meds for one problem because you’re steroid-dependent for ANOTHER problem?

      As far as the pain after ankle arthoscpic debridment.: I haa mne done years before my ankle replacement and I don’t remember being in that much pain afterwords. I took several doese of toradol for pain and some vicodin, but other than that, I don’t remember that even arter debridement, there was much pain.

      As far as the pain, I’d talk to someone else; no I’d first revist the issue wth him and ask if the reason he doesn’t want to give you pain meds (and this takes a lot of GUTS) because of the recent ‘epidemic’ of opiod abuse.

      So are the people in legitimate pain to suffer; does he know, doews he REALLY know the impact that pain has on your life? TELL HIM. He won’t want to listen butt if he is as hard about pain medication as he sounds, he needs to know why his business is going to start falling off!

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      • I had my ankle core decompression and debredment surgery a few weeks ago. they now think it has spread into my knee. I go for a MRI of my knee on Monday. I can’t take ibuprofen because I’m steroid dependent. he doesn’t prescribe pain pills unless it’s after surgery. so I have to suffer waiting to see what they are going to do. should I see about going to a pain clinic? I hate this doctors don’t give you any information about the disease. I hate this I feel like I’m eighty.

    • Contact on my WhatsApp no 7005575148 avn can cure without any operations
      I’m also a avn patient that’s I got fully cure by a old man who is a physio therapist master

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  24. Wow Judy- I just read your post and I am so sorry to hear everything that you have been through. You still have a great attitude. I hope you are doing better.

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  25. Hi Amanda:
    I read your post and I have a question. What was the name of the gene mutation that you have that causes blood clot or slows the blood flow to the femur? I want to see if this is what I have. Did you only find relief after your hip replacement? I have only had CD in my right hip. I have bilateral AVN of the femur. Thank you,

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  26. I was actually diagnosed by the VA back in 2009 with AVN in both shoulders & both hips. Initially I’d gone in because I could barely move my left arm. A year later I finally get to see the Ortho for the first time…X-rays…MRIs…shots in my shoulder (which were very painful & made everything worse)…& nearly a year 1/2 later I finally get to see a specialist, only to find out that the cartilage in my shoulder had collapsed! My surgeon said he didn’t know how I was still using my arm at all! Replacement #1 down.
    Now here’s where it gets ridiculous. All of the VA Drs told me that my AVN was too far progressed for any type of decompression treatment to stop progression & that when I had “a blowout” they’d do replacement surgery. Until then I basically just had to deal with the pain! I’ve been in pain management for years now thanks to finally having outside insurance other that dealing with VA Drs. Recently I got referred to Ortho at UF Shands in Jacksonville, FL & these Drs know their stuff. Come to find out, it wasn’t as far progressed as the VA had told me (both hips are at Stage II) & I had my first core decompression in my right hip a week ago today. I realize there’s a chance I may still end up needing replacement, but I have high hopes.

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  27. hi I m 50 having bilateral hip avn last 16 years. I walk 5km daily .suffer lots of pain in past years but alongwith strenous exercise throughout.now only mild limps. stage 3 hip avn with lots of painless exercises daily. hopefully won’t need operation.

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  29. I am a 22 year old male, I was diagnosed 1 year ago when having a MRI done of my knee joint they noticed dead bone in my femur and in my shin bone. Not inside the knee joint but about two inches above and below. A few months before this I had a nasty bout of pancreatitis, they believe either this or gout caused my AVN. However they never proved that I had gout. I have only seen one specialist about this. This specialist prescribed me with alendronate so far the pain is the same not horrible but hurts worse on overcast days. It seems like there isn’t nearly enough research being done

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  30. I’m 21 and I recently was diagnosed with AVN in both knees it’s caused from chemo and cortico steroids. I just finished 3 years of treatment for leukemia and haven’t had to take any chemo/steroids. My knees still hurt and pop but am starting to hear clicks in my shoulder and hips. So im really just wondering even though I’m not on those drugs can the AVN still spread or what any information about the progression of it.

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  31. Hello, I am a 48 year old male who was diagnosed with AVN in both hips and both shoulders the summer of 2017 from the use of high doses of prednisone for vacuities 2 years prior. I tall started around June 1, with slight pain in hip and shoulder on occasion. By Sept 15th I had a core decompression in my right hip to try and save it (stage 2), my left hip had already started to collapse. After the core decompression of right hip, my Doctor had me on crutches for 6 weeks. The added stress to my shoulders resulting from use of crutches busted both of my shoulders up really bad, and did nothing to relieve pain in my left hip. A total hip replacement was done on Oct 30, 2017 The left hip replacement is doing very well. Both shoulders need to be replaced in the next couple of months, first one is happening right after the first of the year.
    Is there any recourse for those of us that were prescribed high doses of steroids that caused this horrible condition?

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  32. Hello,
    My name is Amanda. Last week I turned 33. I was 31 when I recieved my diagnosis of AVN. I had high hopes that I could get through this. I’ve been through so much in my life already, why not overcome this? Right? Well, I definately was not as prepared to handle all of this as I had originally thought. The doctors don’t have a definate answer for me on why I developed this. They also said that it could have been a combination of everything. I was born club foot, and eventually overcame that to become a gymnast and a dancer. I was a cheerleader for a single season of basketball during middle school. Sadly though I have had my far share of illnesses and injuries. Of course when your team is depending on you, you’ll do just about anything to keep from letting them down. Which I believe is why I ended up with AVN. I was the type to take the injection in the knee and walk it off. I mean come on, after all I broke a growth plate and walked on it for a year before it was discovered, I broke my knee cap and walked on it for 4 years before it was surgically repaired. I’m a clutz and I know it. I break at least one foot/ankle a year and walk it off, i break ribs on a regular basis. I have at this point quit going to the emergency room for injuries unless its life threatening because none of the doctors can believe that I’ve broken what I have in my lifetime and it isn’t a big deal to me anymore. I’m so sick of being hurt and being accused of seeking medication, when in all of my charts it states in big bold print: “DO NOT OFFER PAIN MEDICATION, YOU’LL ONLY PISS HER OFF”. To me, the meds are only a band-aid. I’m sick of people stealing them from me so I won’t even fill the medication if they write it at the hospital anymore. Would it help if i took it? Well yeah, duh, it’ll help lower the amount of pain that i suffer with, but quite homestly if the doctors would just stop ignoring me and fix the knees correctly I wouldn’t need anything at all, ever. But no surgeon wants to touch someone to do a knee replacement at my age.I have kids. I miss doing stuff with my kids. This disease is slowly killing me because I’m watching my kids grow up from the sidelines. I hate not being able to walk where I want when I want without extreme pain. I searched for a good orthopedic doctor that knew as much as possible about AVN. I found Michael Mont, he invented most of the surgeries that are currently out there to treat AVN. I was lucky enough to see him at The Cleveland Clinic main campus in Cleveland, Ohio. He preformed core decompression on both of my femurs and tibias; which unfortunately was not sucessful. The surgery ended up not restoring the blood flow and I have more pain now after the surgery than before. My results are not typical though. The pain that I now suffer from is a completely different type of pain from before the surgery and it is much more intense. I am not recommending to anyone under any circumstances to not have this surgery. The surgery was my glimmer of hope that at some point I could return to doing activities with my children. At this point however I am told that I must learn to deal with the pain and wait for the bones in both my legs to collapse. So, if anyone out there has any suggestions, I am definately open to them. However any of you out there hoping to find Michael Mont, he’s moved on from the Cleveland Clinic now and I do not know where he is currently practicing.

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  33. I was diagnosed with AVN and im 14. My foot had been hurting me much worse as i had previously just recovered from a fracture to my 4th metatarsal. My doctor took an X-Ray and noticed my bone was significantly smaller and then diagnosed with AVN the pain is the worst of all things, I’m barley able to bend my folt due to the bone dying. The even worse thing is that even fewer people get it in the spot in my foot so not many doctors know what to do

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    • I’m very sorry that you’re having to deal with this diagnosis at such a young age. I was stupid growing up and was hard on my joints. I broke my feet a few times. I know how much that sucks. There are support groups on facebook. I’m in a few of them. With your age the doctors may be able to remove the dead bone and put in a plate. Look for Michael Mont or Connor Cole. Cole worked under Mont at the Cleveland clinic

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  34. Hi my name is Leona Anderson i has had 2 hip replacements due to osteonecrosis where the doctor said it was removed with the hip replacements I did not know any thing about necrosis i was under the impression it was because I had osteoarthritis or rheumatoid arthritis now that was back in2015 and 2016 in about 2018 I found I had necrosis in my left leg under my knee. In April 2000 I fell broke my right shoulder in three places I didn’t July, I kept comping to my doctor at the pain clinic about the pain in my shoulder . they sent me to get a MRI Dr.Joiner told me that the three bones were healing but the necrosis had set in under the bone and had to be removed. That was Oct 28 2020, in April 2021 I was in a car accident and tore my rottter cup and had to get a new shoulder put in ,before I had the shoulder put in I went back to Dr. Barrette because he did my hip replacements He told me there was nothing he could for me because having pain in my right knee is osteonecrosis has traveled from the center of my thigh to the middle of my right leg. Is it to late for me to get help or is it possible that I can get help please call me if you can help me! Can you call me 629-216-8133

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