Doctors

Please share your experience with doctors and with your permission I will post their information and quote that the information came from you. As a community we need to work together and spread our knowledge!

Surgery is not an option for me, so I am only going to post other doctors who you have worked with, had positive results with and who you would recommend.

Charles Glueck M.D., Medical Director, The Cholesterol and Metabolism Center

Dr. Charles Glueck is who I have been working with closely. I feel confident posting his information and encouraging others to contact him.

Charles Glueck, M.D., has devoted the last decade of his career to clinical research and patient care in: clotting disorders, ocular thrombosis, osteonecrosis, idiopathic intracranial hypertension, amaurosis fugax, sporadic and recurrent miscarriage and is the author of over 600 scientific papers.

Thomas A. Einhorn, M.D., Chairman of the Department of Orthopaedic Surgery, and Professor of Orthopaedic Surgery,  Biochemistry and Biomedical Engineering at Boston University

When I was first on my quest to find help I was told about Dr. Einhorn and the stem cell surgery he was doing for Osteonecrosis (Avascular Necrosis) patients. I sent Dr. Einhorn my discs, he was very gracious and reviewed them and called me back. Unfortunately for me my disease was in multiple patches and I wasn’t a candidate for stem cell surgery. However, I know he has had a lot of success with many ON (AVN) patients and I highly recommend contacting him.

Joseph M. Lane MD., Chief of the Metabolic Bone Disease Service at Hospital for Special Surgery

Specalizes in metabolic bone diseases. Dr. Lane has published several clinical papers on bone biology, tissue injury and repair, trauma, bone and soft tissue sarcomas, limb preservation, functional amputations, limb regeneration, and metabolic bone diseases (osteoporosis, Paget’s disease, rickets, osteomalacia, fibrous dysplasia).

Quote from AVN sufferer about Dr. Lane: “If you are looking for stem cells, Dr. Joseph Lane at Hospital for Special Surgery in New York should be considered….I did have to wait 3 months to see him. Before one sees him he sends a prescription for a complete blood count, plus calcium and vitamin D situation… He spent time with me which is unusual. He gave me a percentage of the size of lesions in my hips which is totally unusual. He uses Forteo (bone building drug) with Fosamax for his patients he also does stem cells.”

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72 thoughts on “Doctors

  1. I used Dr. Mark Katz in San Antonio Texas to treat my stage 4/5 AVN. He specializes in doing Free Vascularized Fibula Grafts to treat AVN. He is an amazing doctor. He nit the most personable guy you will meet but who cares if he’s a great surgeon!

  2. If you are looking for stem cells, Dr. Joseph Lane at Hospital for Special Surgery in New York should be considered. I saw him December 2011. He did not want to do stem cells for me because I had had core decompressions done by a different doctor (holes in the bones) in June 2011. I wish he had agreed. I did have to wait 3 months to see him. Before one sees him he sends a prescription for a complete blood count, plus calcium and vitamin D situation. He expects you to get a local Dexa. He spent time with me which is unusual. He gave me a percentage of the size of lesions in my hips which is totally unusual. He uses Forteo (bone building drug) with Fosamax for his patients he does stem cells on. I felt he was a caring doctor who did not run me in and out in 20 minutes.

  3. Dr. Charles Glueck in Cincinnati, Ohio. I never saw him. I simply wrote him my clinical history and was sent a list of blood tests to take. I went to a hematologist locally and the blood tests were taken. I sent them to Dr. Glueck to interpret and recommend what, if anything, should be prescribed. He did not charge me to date. Of course the local hematologist does demand a co-pay. I am impressed Dr. Glueck has spent so many years studying avascular necrosis and helping people like myself. It turned out I did have a major blood clotting disorder. No orthopedist I saw even mentioned blood clotting and avascular necrosis.

    • Thanks for this info. I just got the instructions from Dr. Glueck, will try to schedule an appointment at LabCorp for Tuesday and send off the samples to him. So does the lab send the results directly to him? I saw there was one test that has to go to Kentucky; I presume they send the results to him.

    • I ALSO MUST MUST MUST recommend DR GLEUCK. He has diagnosed my 13 yr old with abnormalities in his blood work which will only improve his difficult situation with femur head ON and his life.
      THANK YOU FOR THIS BLOG AND THIS RECOMMENDATION!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  4. I’ve seen Dr. Cynthia Kelly and Dr. David Haun, both of the Colorado Limb Consultants in Denver. Both a friendly as the day is long and Dr. Kelly is the medical director of the AVN clinic. They are both part of the group, formerly known as the Denver Clinic for Extremities at risk and they have docs on staff who do microsurgery of the hand and very progressive treatments.

    Unfortunately, both my ankles have collapsed, so there was little that Dr Haun could offer, but he spent a good 40 minute with my husband and me. Dr. Kelly is one of the top knee and hip ON specialists. She referred me to Dr. David Weinstein in Colorado Springs, someone who I would HIGHLY recommend for the ON of my shoulder. It, too had progressed too far to benefit from the joint-sparing techniques, so last December, he did a partial shoulder replacement.

    I’d highly recommend any of these people.

    Dr, Haun and Dr. Kelly
    1601 E. 19th Ave.
    Denver, Co. 80218
    ph: 303-837-0072
    http://www.thedenverclinic.com/ avascular necrosis tab on the far right
    web: http://www.limbconsultants.com/
    most of the time you’ll see them at the 19th Ave address, next to Pres-St. Lukes Hosp.

    Dr. Cindy Kelly is the medical director of The Denver Clinic for Extremities at Risk Osteonecrosis Program. Dr. Kelly is a regional expert in hip resurfacing procedures and has a clinical interest in stem cells for treatment of osteonecrosis.
    _____________________________

    Dr. David Hahn is an orthopedic surgeon with specialty training in foot and ankle surgery. His clinical interest is in talar osteonecrosis (AVN) and osteochondral allografts for treatment of talar AVN.
    ___________
    Dr. David Weinstein

    http://www.ccoe.us/

    Pine Creek Village Center
    9475 Briar Village Point, Suite 325
    Colorado Springs, CO 80920

    P 719-623-1050
    F 719-623-1051
    HE WAS GREAT AND I COULD NOT RECOMMEND HIM-OR HIS PA, JEREMY, MORE.
    Hours M-F 8-5pm

    • Annie-is there any kind of stem cell treatment that can be done for the ankles? I’m doing the 90 day lovenox but I’m having quite a bit of pain in the ankles, especially if I’m late on a dose. Just wondering,since I’m probably only stage 1, if there’s anything in that direction for me.

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  7. I am 41 years old and was recently dx with patellar AVN. I have not had any lab work done as of yet. I am in terrible pain which seems to be going down my calf, affecting my achilles and my heel. I am fortunate to be very petite, however. I was also dx with Ehlers Danlos Syndrome 15 months ago. I have already had a total knee as well as an osteotomy some years ago. I am DESPERATE to find a doctor who specializes in AVN who can help me. It sounds like I am late stages of the diagnosis. Thank you for whatever input you can give!

    • By the way, I live in Western Iowa and have been seen at Creighton as well as UNMC. Creighton suggested amputation and UNMC didnt receive copies of my bone scan or xrays so the doctor just left me to collect everything and return it to him and he will get back to me when he can. I was disappointed in the outcome of that appointment, to say the least.

      • Traci,

        I’m sorry you are having to go through this. Do you have a specialist for Ehlers Danlos Syndrome? Have you joined any of the osteonecrosis facebook groups? I don’t know of any doctors in Iowa, but if it’s okay with you I will post about you on the different groups I am a member of and will try to help you. How do you know your AVN is in a later stage?

      • Hi. Yes, feel free to post any of my information. I am not connected with any other AVN fb groups. I wasn’t aware there were any. I do not have an EDS ‘specialist’. Since it effects so many parts of the body, I am just trying to find doctors who have enough knowledge to help me. Thank you so much for your help!!!
        Blessings!

    • I have not know of any specialists in the Midwest in AVN. As far as EHLERS DANLOS, I have always been told that it is a connective tissue disease. I will do some further research, though. Thank you!

      • Hi Traci,

        If you have patellar AVN depending on your age, you might want to consider a patella allograft (i.e. a replacement from a cadeaver) or a patellectomy.

        Obviousy, it depends on how far you are along. It just sounds it might be hard to re-generate at this point but you could always try.

        Anyways you might want to ask about those treatment options. Patella allograft > Pallectomy but given you are having a high amount of pain in the patella it wouldn’t be a bad idea. Sometimes they even produce artificial patellas.

        Dr. Bugbee in San Diego is the most experienced doctor in the world in Osteochondral allografts and could likely do one for your patella. Google him.

        Good luck!!!!!!!!

  8. Autoimmunity is often what causes connective tissue diseases. Sjogren’s is one example. But to your question of ON docs, I know of docs in Denver. I’d also imagine that Creighton or the University of Iowa would have them. There are also docs in TX that I know of. Chicago, too.. Or, are you further east? Like PA? Annie.

  9. Traci, I just saw that you’re in Western Iowa. Can you travel? There are loads of AVN specialists in Denver. I realize that’s not an hour away, but these folks are good. Dr. Cynthia Kelly’s group and she’s the head of the AVN clinic.

    • I am willing to go ANYWHERE i wld need to to get help. The pain and frustration is very wearing and is getting to be too much to handle. Thank you!!!

      • Traci,
        A member of an online AVN group on Facebook said her husband was recently treated for AVN by Dr. Noiseux at the Univeristy of Iowa Hospital. I don’t know how close you are located to that University but here is a link to their Orthopedics Department: http://www.uiortho.com/index.php/for-patients.html
        Maybe you should give them a call and see if they can help you, or at least direct you to someone who can.

  10. Traci, in Denver is Dr. Cynthia Kelly whom I’ve see and is really good. She’s the head of an AVN clinic, so she’s not just someone who has HEARD of AVN. She cares for the AVN of the hips and knees and one of her partners, Dr. David Hahn, is a foot/ankle OS and he is also quite accomplished in AVN. Their website is http://www.thedenverclinic.com This is the Denver Clinic For Extremities at Risk. Several people I know of had had surgical procedures recently by Dr. Kelly. I’d highly recommend them if you’ve checked out Creighton. Doesn’t University of Nebraska have anything? I also think there are people in St. Louis, but I know Dr. Kelly and Dr.. Hahn to be good. Then down the road in Colorado Springs (depending where your AVN) is Dr. David Weinstein who replaced my shoulder after Dr. Kelly recommended him. He’s excellent and has one of the best bedside manners I’ve ever known.

  11. Pingback: Enoxaparin Prevents Progression of Stages I and II in Primary Osteonecrosis of the Hip | Osteonecrosis (Avascular Necrosis)

  12. I have AVN in left patellar (knee cap) like 50% of knee cap. I’m concerned to hear a doctor suggesting amputation to you. I saw many doctors but nobody told me my leg would have to be amputated! In fact I saw an amazing doctor with a wonderful resume in October of 2011 at Hospital for Special Surgery in New York about my knees and about surgery if they had to be replaced (unfortunately he does not accept insurance) and he didn’t say anything about amputating my one leg because it has AVN in the knee cap. I went to see him because a local doctor was telling me my knee was collapsing (that was NOT true) and that my extensive infarcts make it mandatory I have “revision surgery” even though my knees have not been replaced yet. This doctor at Hospital for Special Surgery said he himself would NOT have to do a revision: just a regular full knee replacement on both knees. He also took exrays and said your knees are not collapsing. i’d get a second opinion if somebody was talking amputation.

  13. Joan, the need for amputation does arise when areas fail to revascularize after surgery; if blood supply doesn’ reach the bone, infection can set in (osteomyleitis) and someimes, the only way to treat osteomyelitis is amputiation.

    Osteomyelitis is a risk with any bone surgery,anytime circulation to a bone is cut off. There is no O2 for the cells to receive, and no nutrients for them to keep alive and no way to take their toxins an debris away. Amputation becomes a real possibilityIf they don’t revascularize and grow blood supply in the extremities, they can become gangrenous and there is no other.

    Is there someone whose do mentioned an option of amputation I can see an ‘ELECTIVE’ amputation for pain; but in electing amputation, you’re gorronw WHOLE life time

    • Osteomyletis is treatable by Hyperbaric Oxygen Therapy. I would let a little pain, or even a lot of pain, push you into a brash decision for amputation.

      HBOT for Osteomyletis is covered by insurance in the US and approved by the FDA. I don’t know how it is if you are in Europe. Look into it.

      Don’t cut off your leg, at least yet!!!

  14. Would like to know of a good doctor preferably in the south San Francisco Bay Area to see for initially diagnosing or ruling out what might perhaps be multifocal osteonecrosis in two sisters, both having hard-to-describe pain since a few years after menopause, and both having FVL hetero clotting mutation. One sister was treated for Lyme Disease; one had several back surgeries. Thanks for reaching out with your wonderful blog. Dr. Glueck seems great. What can we do to get more doctors to appreciate the significance of his research?

    • Yes pleae share your knowledge and experience with ON doctors!! I asked Dr. Glueck what I could do to spread his research and he said to continue doing my blog and spread the knowledge within our community. He continues to publish papers, but he thinks that we as a community are the ones who must demand anseers and educate doctors. Seems sad right? But every time I go to a doctor I bring Dr. Glueck’s papers. Some docors are receptive some are not. I will always keep trying and I will continue to work on this blog.

  15. I agree with Cassandra, that our job needs to be to educate docs on what it is; NOT just what they read in medical school text books, but to give REAL information on ON to those who have only encountered it a few times.

    They’re never going to say, “You’re my first patient with ON or I’ve never seen it before,” but there are various approaches to treatment as we well know, that are outside the realm of total joint replacement and core decompression.

    You also mentioned clotting disorders and ON.There is a physician who has found that patients with blood clotting disorders have a higher rate of ON (I think that’s right) and if he treats what is causing the blood clotting disorder, he can manage the ON. Dr. Glueck, i believe is retired (or close to it) and is conducting a study and gives away many of his services for free.

    Cassandra can set me straight ,and MANY see Dr. Gluck and he’s helped them quite a bit!

  16. Wow, I am so glad that I found this blog!! I myself at a 30yr old female with AVN/ON in both my knees. I am fortunate enough to live in Cincinnati where Dr. Glueck practices, and by chance I saw an Orthopedic that had worked with Dr. Glueck in the past on a few research papers and he told me I needed to see Dr. Glueck as soon as possible, well that was about 2 and a half years ago. I actually saw Dr. Glueck this morning. When my symptoms started almost 3 years ago I woke up one day with left knee pain, it continued for about a week then it was both knees, and the pain was to the point where I couldn’t walk without crutches or a walker, at that time I was 27 and a single mother to a very active 4 year old girl. I have since had another baby, a boy this past July and going through the pregnancy with this disorder was one of the toughest things I have ever been through in my life. I have been treated with Lovenox in the past and they hoped that would stop the progression of the ON in both knees, I have been getting MRI’s and XRays every year since the dx and the main concern was that with my pregnancy it would make the ON worse in both legs. I was so happy to learn today that there was no progression of the ON, it didn’t get better but the main thing is that it didn’t get worse and I try to look at the positive side when it comes to this disorder as much as I can. I am concerned that it is starting to effect my mouth and jaw bones now and have an appointment with a dentist this afternoon to find out what is going on. I have constant pain in both of my legs every day and now my jaw has been hurting for no reason for over a week so hopefully I will find out what is causing the pain today! I am very thankful for Dr. Glueck, he is so passionate about his work and takes the time to explain everything to me and answer all my quesitons wether I am in his office or emailing him from home. I am so thankful for him, when I first started with the symptoms the Dr at the ER tried to tell me I sprained both of my knees, and I kept asking him how would i have done that, he could not give me an answer but wanted to get me out of the hospital so he just gave me pain meds and told me to follow-up with my PCP. They also thought I was seeking pain pills till I was at the hospital getting the MRI done and told by the MRI tech that I needed to go straight to my PCP’s office when I left there because they needed to review my MRI results with me as soon as possible. I now have to see Dr. Glueck every 3 months and I am in pain manangement so I see the pain manangement Dr every month. It has been a long bumpy road and I am just glad that there are others like me out there, I felt so alone and was always so depressed about all of this and I am just now starting to accept it, I have no other choice! I have to stay positive and pray that everything will work out for the best no matter what. I know that I am doing everything I can to make it better and that is all I can do!

      • Lisa,
        Not long at all. He has certain days each month when he sees new patients. Call his office and email him. He’s very good at returning emails promptly!

    • Jennifer,
      You are definitely not alone! There are a lot of us in our 30’s with AVN. The people who follow my blog are awesome, understanding and supportive. I’ve also met a lot of other people with AVN on Facebook groups. It is always comforting to talk to someone else who knows how you feel and how this disease has changed your life.
      I’m glad you are seeing a pain mgt. specialist. I’m actually in the middle of writing a post about living with and managing chronic pain.
      How did you handle the pain during your pregnancy,? I want to have a baby very badly and am scared about carrying one while I have this disease. Did you have to be bed ridden? Did Dr. Glueck manage you while you were pregnant? If you don’t want to answer these questions in an open forum you can email me at: cassandraschnupp@gmail.com I would really appreciate hearing about your pregnancy!!
      Yes Dr. Glueck is amazing and I feel I owe a lot to him. Especially, since being on Lovenox, my disease has started to regress. I’m having more MRIs next month, I hope I have good news to share. It’s fantastic that your disease has not progressed. That’s a really good sign and perhaps indicative that your body will heal itself eventually. Regrowth of new bone takes years.
      Is there any reason, as in risk factors, that you think you might have ON of the jaw. Have you been on bisphosphonates or steroids?
      Thank you for visiting my site. It’s good to keep connected with others in the ON community. I think it’s hard for other people to understand what it’s like having with this disease.
      Best, Cassandra

    • Hi Jennifer,

      I hope the medicine does well and makes you better.

      If it ever reaches the point where there is joint destruction (pray not) there is a doctor in San Diego who has good outcomes repairing this. His name is Dr. Bugbee and you can find him through Google.

      I wish you well and that everything turns out well. Look into alternative treatments like Hyperbaric Oxygen Therapy (would have to pay out of pocket–$150/ session depending on area), Electrocorpeal Shockwave Therapy (not sure where this is available…but it works! done in China) or Osteoking (have yet to try this but probably much like alendronate is good at stopping progression)

      Anyways, good luck with everything and thought I would share some treatment options. !!

      • Hi John,

        This is Mahesh from India. I need your opinion on Osteoking. have you tried this medicine and is it safe to take?

        if you have taken this medicine, since when you have started this and what is your opinion after taking this medicine

  17. There are so many potential causess to the ON that I’ve got, no one really knows. I had a knee replacement which was successful as far as the prosthesis goes, but I still have problems with the muschlature that I think are unusual. Another OS is looking into it.

    Some years ago, it was documented that I had ON in a heel and all the docs didn’t know what to do about it. I saw a podiatrist for some time and Dr. Rahimi explained in detail what ON is and how it affects the feet, I’m a nurse and have worked with many a doc; but they paled in comparison.

    He was able to get some coral matrix from the OR that he worked in and debrided the inside of my heel, then he injected the coral matrix and we waited. We waited and IT REVASCULARIZED. There are OS I’ve seen since who think I’m full of hooey, because they see only VASCULARIZED tissue and bone in my heel. There was even a f oot/ankle specialist who doesn’t even believe I had it done!

    Dr. Rahimi (I put his contact information in the data base) told me that at MAXIMUM. I’d experience relief for 3 years. That was 7 years ago!

    I have ON in hips, the other knee both fibulas, both ankles and both feet. I had a shoulder replacement a year ago-which I must say was so much more a success than I expected. There are a bunch of OS in the database of the yahoo group. Cassandra has done a real service to the ON community by starting this blog.

    Keep coming back and there are people who offer so much and they’ll become your online friends. Annie

  18. Hello. My name is Lyndsay and I’m 40 recently diagnosed with AVN in my left hip as a result of a severe fracture of the femural neck in 1991. I’m scheduled to see Dr. Einhorn on Feb 7 and just had an arthrogram, MRI and Xrays. Curious if someone could tell me how the different stages of AVN are measured? Also, does anyone know what stage would not be a good candidate for stem cell treatments? Thanks so much in advance. I’m glad I found you!

    • Lyndsay,

      I have spoken to several people who have been treated by and or are going to be treated by Dr. Einhorn. I’m not sure about his success rate in regards to AVN caused by a severe fracture. I’m going to blog your question on my site. Sometimes people ask questions on here and I’m not sure other followers of this site notice them, because it’s not an open format per say. Also if you read through the comment threads under doctors and your story you will see several people talking about stem cell research. Everyone in the AVN community is so helpful. Feel free to reach out to other AVN sufferes!

  19. I should think that whatever the cause of ON, Dr. Einhorn can treat it. My reason for thinking this is that he KNOWS that ON exists, he TREAT it, he’s SEEN the suffering. He believes that it exists and knows the challeneges we face. I think that’s the major obstacle to it’s treatment: physicians don’t either believe it exists or don’t KNOW that it can be treated. Dr. Einhorn has shown that he does both, so I’d look forward to a good visit on the 7th. Annie

  20. Thank you both for your kind comments. I’m so anxious about the prospect of not getting treated. I see all of you suffering far worse than me and it’s terrifying to think that the current treatments are all we have. The stem cell procedure is a bit of a beacon of hope for me at the moment. I hope all of you can find some relief from all the suffering you are going through. So appreciate your feedback. Lyndsay

  21. Hi Cassandra,

    First, thanks so much for emailing me a few weeks ago and also replying to my long email regarding my steroid-induced shoulder AVN diagnosis. I have finally had a chance to explore your site to a greater depth. Thanks for providing such helpful information! Also, sorry if I sounded so frustrated in my last email. I have been experiencing a bit of AVN information overload and have been feeling so incredibly overwhelmed by it all. I thought researching and trying to make medical decisions regarding my ulcerative colitis and then ostomy was tough, but AVN is so much harder. It seems like so little is known and then when research studies have been done, so few doctors even know about them.

    The information you provided on Dr. Glueck’s research is very helpful. If I understood it correctly, it sounded like Enoxaparin medication is helpful for primary AVN with probable clotting disorder causes. However, it also looked like it has not been that helpful for stopping disease progression in stage 1 and 2 secondary AVN due to steroids even if there is also a clotting disorder involved? Is there any benefit of finding out you have a clotting disorder if you are 99.9% sure that your AVN was related to high doses of prednisone?

    Also, I feel like I am the only person with AVN who has a very strict HMO insurance plan (Kaiser Permanente). I cannot visit any non-plan doctors or have treatment in any non-Kaiser facilities (unless it was an emergency situation) without having to pay full price. Even if I were to get a prescription for clotting disorder blood tests from Dr. Glueck, I wouldn’t know how to get them filled. My medical facility only accepts prescriptions and lab work referrals from Kaiser doctors. Unfortunately, I don’t have the financial means to go outside of my insurance plan for major procedures. Are any other readers in this same situation? If so, what did you do?

    Also, once you had the results of the blood tests back, how did you get your orthopedic doctor to pay attention to them and take them seriously if it was something they never heard of?

    Thanks again for your help and for the amazing site!

    -Heidi

  22. Hi Cassandra,

    First, thanks so much for emailing me a few weeks ago and also replying to my long email regarding my steroid-induced shoulder AVN diagnosis. I have finally had a chance to explore your site to a greater depth. Thanks for providing such helpful information! Also, sorry if I sounded so frustrated in my last email. I have been experiencing a bit of AVN information overload and have been feeling so incredibly overwhelmed by it all. I thought researching and trying to make medical decisions regarding my ulcerative colitis and then ostomy was tough, but AVN is so much harder. It seems like so little is known and then when research studies have been done, so few doctors even know about them.

    The information you provided on Dr. Glueck’s research is very helpful. If I understood it correctly, it sounded like Enoxaparin medication is helpful for primary AVN with probable clotting disorder causes. However, it also looked like it has not been that helpful for stopping disease progression in stage 1 and 2 secondary AVN due to steroids even if there is also a clotting disorder involved? Is there any benefit of finding out you have a clotting disorder if you are 99.9% sure that your AVN was related to high doses of prednisone?

    Also, I feel like I am the only person with AVN who has a very strict HMO insurance plan (Kaiser Permanente). I cannot visit any non-plan doctors or have treatment in any non-Kaiser facilities (unless it was an emergency situation) without having to pay full price. Even if I were to get a prescription for clotting disorder blood tests from Dr. Glueck, I wouldn’t know how to get them filled. My medical facility only accepts prescriptions and lab work referrals from Kaiser doctors. Unfortunately, I don’t have the financial means to go outside of my insurance plan for major procedures. Are any other readers in this same situation? If so, what did you do?

    Also, once you had the results of the blood tests back, how did you get your orthopedic doctor to pay attention to them and take them seriously if it was something they never heard of?

    Thanks again for your help and for the amazing site!

    -Heidi

  23. Hi All,
    Am new to this website and was looking for names of Dr’s in WA who specialize in AVN of knees. I have been working with Dr Neil Roberts at Orthopedics International and I adore him, but as he says, he is not an AVN specialist. Since a meniscal repair in April 2009 resulted in 3 areas of AVN in my left knee, I have had microfracturing of the medial femoral chondyle which failed to revascularise the surrounding bone. I have had 1 allograft surgery and 1 autograft surgery. Both grafts died from the bone upwards. Dr Roberts does not know why this has happened and we both beleive it is due to my already having auto immune issues. i have been trying research other options b ut not having much luck. I know that he takes my file to all conferences to see if any other Dr’s he meets have a new approach. I am in my 4th year of taking high doses of hydrocodone for my (non visible) pain and just want it over with. MY next step is a partial knee replacement, but I cant find any info as wether my body could reject that as well.
    Would love it if any of you have ideas/names etc.
    Wishing you all pain free days as often as possible
    Sophie

    • Sophie,

      I was doing some research and talked to a moderator of a yahoo group on AVN, she’s knowledgeable and has been a moderator of her group since 1998. She said that a lot of people have gone to the University of Washington.
      Specifically Dr. Paul Manner http://www.orthop.washington.edu/?q=faculty-profiles/paul-a-manner-md.html

      Some other doctors mentioned were:

      Dr. Bruckner, MD at Bellevue, http://www.pro-osm.com/directory/people/show/james-d-bruckner

      Dr. Toomey, at Swedish

      http://www.swedish.org/Physicians/Sean-Toomey#axzz2K3Gb1BUw

      I hope this information is helpful! Let me know what happens. Please keep me posted I want to know if any of these doctors were helpful to you. Long term goal of mine is to compile as complete a list as possible of AVN doctors countrywide. Good Luck! Cassandra

      • I saw Dr Manner in the very beginning when I was getting a second opinion. Unfortunately, he said that the area was too small for him to take me as a patient and that the pain I was experiencing was not normal.
        I subsequently learned that this is quite normal in cases where the AVN was caused by another Dr’s surgery.
        I also consulted with the head of Oncology at UW who agreed it was a very painful condition and that Dr Neil Roberts( my orthopaedic doctor since the beginning) was highly qualified to remain my doc and I chose to stay with him. I adore him as a Dr and I can honestly say that he is doing everything he can to learn about my weird reactions and treat me accordingly.
        He has done 4 other ortho surgeries on various parts of me and I have never had a problem. I was curious to see if there were any other docs with this kind of experience in WA and also if anyone knows about possible immune related rejection of partial replacements
        Thanks for all of your help

        Sophie McMillan

      • Sophie,

        I don’t know about people having rejection of partial replacements. I’d have to do some research before i’d feel competent to discuss it. Another good place to talk to osteonecrosis sufferers is a yahoo group: http://health.groups.yahoo.com/group/osteonecrosis/
        They’ve been around since 1998, there are a lot of members. I just recommended someone else go on there. There are a lot of stories on my site but I haven’t read about your particular issue but I’m sure if it’s happened to you, it has happened to others. Check out the yahoo group. Do a search. Let me know if you find others with the same issue. Good luck!

  24. Sophie, mine was not a knee (although I had a TOTAL knee replacement), but in 12/11 I had a partial shoulder replacement by Dr. David Weinstein in Colorado Springs. He specializes in shoulders and believes that you ought to pick a joint or two and do it well, He’s chosen the shoulder joint, and besides me, I’ve not heard a negative thing about the docs in his group.

    But, you had a rejection? What was the nature of the rejection? The only thing I can thing of (actually 2) is that you had a reaction to the titanium or other part of the implant, or since part of the implant was an allograft (and allografts are genetically dissimilar-BUT CLOSE) there could have been a reaction to the allograft that caused the bone to die, completely.

  25. Anne, my first bone graft died from the bone up. It was a cadaver graft and initially, it looked as though it had been a successful surgery. i was completely pain free when mobile for approx 3 months. Then , i started to experience random stabbing pains in the area of the graft which became more regular and painfulover the next couple of months. My Dr was in regualr contact with me and at the 6 month mark he did an MRI which showed what looked like a perfect graft. We decided to wait a little longer to see if anything changed, and by 8 months after the surgery he recommended doing another surgery, with the understanding that if the graft had failed he would remove it and replace it with a new graft taken from my knee. He said that on first seeing the graft area it looked “perfect” but when he touched the top of the area, his scalpel sank into my knee and the graft had died from the bone up. My body had failed to revascularize. I knew this was a possibility as this happened when he microfractured the area in 2011 He performed the new graft surgery and i spent 13 weeks totally non weight bearing.
    I had the surgery 9/18/2012 and only began slow weight bearing over the Xmas vacation. It is now 2/11/2013 and I am in constant pain. It is the same stabbing sharp pain at the site of the graft and this time I can feel the graft area moving occasionally. The only way to lnow for sure if this graft has failed is for him to open the knee again. My case is regularly discussed and none of the doctors at Orthopedics International know why there was no revascularizing occuring.
    I have spent way too many hours researching this myself and the only reason i keep coming across is an immune based rejection. I have hyperthyroidism and there are other auto immune diseases in my family.
    My biggest worry is that my body/immune system will react the same way to a partial replacement, but i cannot find any medical information about this possibility.
    Phew….any insights will be enthusiastically received

    • Update time. I had a partial knee replacement on July 2nd which seems to have worked. The Dr found another area of AVN underneath the graft area. Despite his reaming the area and getting good blood flow, there must have been some AVN that was missed.
      It is a slow recovery from the latest surgery but that awful ice pick pain has gone.
      I wanted to add a Dr Peter Mandt at Swedish in Issaquah to your list of Dr’s in WA. My Dr sent me to him for a second opinion on the type of knee replacement he was considering. Dr Mandt took one look at the MRI and showed me where the second graft had collapsed and said it had been that way from day 1. He is an incredibly knowledgable Dr and was one of the team in Oxford,UK, that developed the Oxford Partial Knee joint.
      I wish all of you pain free days and Dr’s who care

  26. I was diagnosed with AVN in both knees in 2011. My right knee was replaced 12 weeks ago and is doing well with some minor pain which I think is to be expected. I go for an MRI on my left ankle today to determine if the AVN has spread there. I don’t have one doctor managing my case and no one knows why I developed AVN except that I had a bad reaction to 12 day dose of prednisone in January 2011. My lung function went down to 48% and I experienced extreme pain and swelling in my knees and ankles. I did have the decompression surgery on both knees befor the TNR. The OS I’m seeing for my ankle says all I can do is stay off of it if it is AVN. I’m 45, I work full time and I’m raising a 7 year old autistic grandchild. This is not an option. I am in the Roanoke, VA area and wondered if you knew of an AVN specialist around here. UVA and Duke are both within a few hours of me. Any help you could give would be very much appreciated!

    • Kristy,

      Thank you for sharing your story. So many people have developed AVN because of steroids I wouldn’t be surprised if that is the reason why you did. Or as I write about on my site, you could have a coagulation disorder. In combination with steroids, coagulation disorders make you even higher risk for AVN.

      I would contact the Department of Orthopedic Surgery at Duke Unjversity: http://www.orthopaedics.duke.edu/modules/div_ortho_contact/index.php?id=1

      I’ve seen them mentioned on other AVN sites and they have released several papers on http://www.pubmed.com

      You can read all kinds of clinical papers on PubMed it’s a very valuable source of information. Search the term osteonecrosis and or avascular necrosis and you will see the latest clinical research papers.

      Please let me know if you go to Duke and if your AVN has spread.

      Good Luck! Stay strong in spirit.
      Cassandra

  27. A doctor who did my stem cells with bone marrow aspirate concentrate procedure at a very reasonable cost when Americans doctors could not or would not and I am very happy with the results:

    Phillippe Hernigou, Professor
    Groupe Hospitalier Henri Mondor
    Service d’ Orthopedie
    51 av. Du mal. De Lattre de Tassigny
    94010 Creteil Cedex, France
    France
    Zip code 94000
    Phone : 011.33.1.49.81.26.01
    Email : phillipe.hernigou@hmn.ap-hop-paris.fr

  28. He does two joints at a time I forgot to add which makes it so economical. You can readily find out who he is on the Internet and read articles he has published in pubmed. I had both hips done and both knees done. He also does shoulders. I do not know what other joints he does. He takes your stem cells from your pelvis. You are instructed to use elbow crutches. I should state I paid out of pocket for this as my insurance does not cover stem cells. I did not meet the protocol for Dr. Thomas Einhorn’s study in Boston because I was past the cutoff age and my joints had some age related osteoarthritis. Pricewise American orthopedists seem to be charging their patients a lot more than what is charged in France and for those who few that are using stem cells, a lot of them seem to be doing joints one at a time which greatly adds to the costs. Both pelvic bones are accessed to obtain the stem cells. One should be aware Henri Mondor Hospital is socialized medicine and does not itemize its billing for the stem cell procedure, which would perhaps make it challenging if you do have insurance that covers the stem cell procedure. Be sure to research his procedure and success rate by reading the articles he has published in pubmed. In fact, his name can be found in the footnotes of many articles written by other doctors about avascular necrosis. I was 63 when I had my hips and knees done. Nobody in America offered me any plan for my avascular necrosis. In all I saw 13 American orthopedists before going to France and wrote all the major hospital centers in America. Since returning, I have seen two additional orthopedists to obtain ex-rays and follow up, etc. Perhaps it is my age or the extent of my avascular necrosis but American doctors seem to relegate people in my situation to the side lines to wait for joint collapse and joint replacements. This thinking is not logical for a body that has 5 joints afficted with AVN. Thus far my stem cells seem to be doing well and I do not regret at all the cost of having this new treatment for AVN.

  29. I was diagnosed with osteonecrosis in both knees in March, 2013. I believe it was caused by Decompression Sickness, however, the first doctor I saw believes that some steroids that I had in 2007 (high dose) really started it. I’m 48 years old.
    I’m also having pain in my left elbow which feels exactly the same but the MRI is negative. I had a wicked synovitis of both hips and left ankle at the same time but Interestingly, when I scuba dive to the bottom of my pool, my hips, ankle and elbow feel better. The elbow is still bothering me but everytime I dive, it feels better the next day!
    Makes me wonder if hyberbaric therapy would be useful.
    I found Dr. Tsao here in AZ and she had discussed doing core decompression on the worst area of my left tibia. I went back to see her yesterday and she had an emergency surgery so I couldn’t see her, after waiting 6 weeks for an appointment and driving 50 miles each way. In the meantime, I also found out that she’s leaving in August ( 2 weeks) but they still want to do all the pre-op for this surgery. I haven’t seen her in two months and have had drastic changes in my symptoms. I don’t want to set up the surgery for core decompression on the left leg when the right is hurting as much. I’m unable to bear weight on either leg for any length of time at this point, using a roller stool around the house and going to get a wheelchair from the VA today.
    I had found out about Dr.Gleuck and he found that I had elevated anticardiolipin levels ( need repeating but going to the lab is so difficult right now) another abnormality.
    I’d like to try the lovenox for 12 weeks but feel that I do need some sort of surgery right away.
    I have Tricare, which isn’t always taken by everybody.
    I’m so glad I found this website! I’ll try contacting the doctors in Denver and the one in San Diego to see if they will take my insurance.
    I’ve had to stop working ( I’m a physician) and the inactivity, after being used to exercising and active lifestyle, is just driving me crazy! The only thing I can do is swim or scuba in my pool and wait for this to do something.
    Thanks again!
    Tracy

  30. Hi, I am from India and my wife is also suffering from AVN from last one year. presently she is on some exercise and some medicines. Presently her pain is Ok.

    Did anyone know more details about Osteoking-Cinese herbal medicine?
    Is the pain worsen inPregnancy?

  31. Has anyone from Bay Area gone through BMCA (Bone Marrow Concentrate Aspiration) procedure for Avascular Necrosis ? I am looking at this procedure but I am not aware of any doctor in Bay Area with successful application of this procedure for AVN. Any information will be really helpful.

      • HI, I traveled for dual BMAC. If you can do so you should not be concerned about the distance.
        My local Osteo agreed with the procedure and will do the follow-up. I used Einhorn at Boston Medical (only 4 hours away for me). You could definitely fly to a surgeon the day prior to the surgery, and fly back either the day after, or 1 day later (I chose the extra day). In all of my research it looked like NYC, Boston, Duke/Raleigh, Cincinnati, and Austin had the most well known doctors in various AVN treatments.

  32. Hi, Thanks for having this website. I just had BMAC and Decompression on both hips and wanted to post a field report.

    Stats: Male, 58yr old, active, no history of Osteonecrosis causes (alcohol, smoking, steroids), and no sign of any of the auto-immune causes. I had an infrequent, very brief, sharp pain in my left hip, almost exclusively when backpacking (tired and heavy weight) for over a year. It finally became more frequent and I was checked – no x-ray findings, and suspected labral tear so ordered MRI with Dye.

    The MRIs showed AVN in both hips, slight crescent on the left. around 20% involvement, also 20% on the right, but no crescent. The radiologist saw slight flattening – I saw 5 Drs, and none saw any flattening on the same MRIs. Received 4 recommendations from the Drs, all well known for Hip and AVN (NYC area);
    1. Do nothing, the hips are gone, you will have total hip replacement in the future
    2. This may be pretty old, you have limited symptoms, and they are not consistent with AVN, wait 3 months, re-mri, then proceed
    3. Do a core decompression, one leg at a time.
    4. Do core decompression and BMAC, both legs, now. (2 doctors agreed with this)

    I chose Dr Einhorn at Boston Medical for the surgery sine he has done more than the others (simple count of hips with BMAC done). Working with his assistant I was able to get an appointment within 10 days. He and his resident, who was also very competent, met with my wife and me for 30-40 minutes, reviewed all the MRIs and x-rays, ordered a physical and blood work, then scheduled surgery.

    Surgery was July 24, 2013, (1 week ago). Both hips were done. Einhorn was pleased with the surgery, but expressed more optimism for the right hip than left. He felt he saw slight flattening on the left hip with the Fluoroscope used during surgery, No other complications.

    Surprisingly I had little pain and have had only Tylenol and only twice since awaking from the anesthesia. I was able to stand ‘tentatively” about 10 hours after the surgery.

    The next steps are 6 weeks using crutches at all times and maximize resting. I bought a wheel chair to use for the six weeks, intermixed with the crutches so I can maximize rest on the joint.

    So far, so good. Right after Surgery my hips felt like I had taken a fall ice skating (sore like a hard bruise, but not real painful). This has improved daily.

    Next step is take it easy for 6 weeks, then limited exercise from 6 weeks – 6 months (limit means limit impact, avoid falls, etc. )
    walk in swimming pool: 2 weeks
    use exercise bike, low level: 3 weeks
    Normal exercise with no impact: 6 weeks
    vigorous exercise, feet on the ground: 6 months (Biking, skiing, etc)
    Running, backpacking, tennis on hold for the long term, but not definitely out. (but probably out)

    No driving for 3 weeks, and caution since any accident during the first 6 weeks could be more dangerous.

    If the BMAC is unsuccessful it will be clear. If it is successful we’ll know in 2 years – 5 years.

    Follow-up:
    To evaluate any progression: xrays in 3 months then every 6 months and MRI at 6 month then as needed.
    To evaluate if bone has grown and is stable: CAT scan, date not yet set.

    My local Osteo, Dr Rogel has been excellent and is the person who found the AVN. He gave me the same recommendations as Einhorn. Rogel thought a full Bone Scan was in order to evaluate knees and shoulders. Thankfully this showed no AVN, though it is less sensitive than MRI.

    Either way I will update this with any improvement or decline.

    Thank you for having a place people can learn from each other. Steve

  33. I’m 23 and have been diagnosed with AVN of both knees. I have been trying to find a specialist in Ohio. I saw the posts about Dr. Charles Glueck but I can’t seem to find out if he’s in my insurances network (I plan to call my insurance tomorrow to ask.) I was supposed to see a doctor at Cleveland clinic but have been turned down due to my age, then they sent me to another doctor there who also turned me down due to my age. Now they are sending me to yet another doctor there, but when I looked up his specialties, AVN was not listed. I’ve asked them to talk with the doctor and see if it’s worth seeing him and they are not returning my call, so I’m pretty frustrated with Cleveland Clinic. I would be willing to go out of state but my insurance doesn’t cover the doctors every one has been listing. If anyone knows or had went to a doctor in Ohio all info would be appreciated.

  34. Dr. Steven Haddad (Glenview, IL), Dr. Thomas Clanton (Vail, Colorado), Dr. John Reach (Yale in New Haven, CT) or Dr. Michael DeOrio at Duke, in Durham, NC, They are the guys to see for ankle ON.

    I have surgery with Dr. Haddad in Chicago in October: 4 hours to replace my ankle and I’m more than a bit concerned.

    • Annie, Good luck. I do not know anything about Ankle AVN, mine is in the hips. However, I do know a lot about post surgery PT. in 2008 I had half of my elbow joint replaced with a titanium prosthesis (radial head). The Drs I worked with said the Ankle, and the elbow require the most PT. The exact quote was “in hip surgery it is 90% surgery and 10% PT, with Elbows and Ankles it is reversed”

      The good news is the PT is fully in your control. It was a long time, but I have full use of my arm, less than 5 degrees of lost motion, no pain, full strength. No one ever guesses my elbow was replaced.

      For me it took 6 months, 6 days a week, for 60-90 minute a day. The insurance only covered 35 days, so the PT firm offered me a deal of $80/ month to use their equipment on my own every day, then $50 for sessions with them several days a week. It will cost you time and money, but much less than a car or even a motorcycle.

      If the surgery is successful you can make the rest successful. It is a grind, but it is possible.

      Sorry to be preachy when I really don’t understand ankles, but I watched a lot of people in PT for those 6 months, and the ones who kept their heads up and really followed the post surgery plan got amazing results. I wish you the best and all the success in the world.

  35. Steve, thanks so much for your answer. We have an increibly good therapy place here, but Dr. Haddad did say that he wanted me UNDER HIS THUMB for a good 6 weeks. That means ‘away from home’ for six weeks. (I live in Colorado and I’ll be having the surgery in Chicago. THEN, and only THEN can I come home and have the PT here. I think they have a monthly rate, too, THere is so much to think of. I’m assuming I’ll pass the pre-op dopplers and all that jazz!

    Annie

  36. Steve, after what has been a long, long haul of getting medical clearances from all kinds of specialists and tests done, the road is becoming active again and this time, REAL ACTIVE. My husband and I leave this Friday for Chicago, where I’ll have surgery Tuesday (4 hour surgery(. I’ll spend 3-5 days in the hospital and then I move to a skilled nursing facility. For 3 weeks, it’s bed- rest with bathroom priveiledges only and my leg will be elegated to minimize selling.

    Then I start PT and I’ve heard, that PT is what PT does. He’s pretty picky about what you do, how you do it and when you do it and at the SNF, they know his rehab schedule. NO weightbearing until 9 weeks post-op and that is partial toe-touch. I hate the thought of Thanksgiving and maybe Christmas away from home, but ‘a man’s got to do, what a man’s got to do….’

    Ciao!! Skype” Teamrn8p Annie Nowlin Colorado SPringa, CO

  37. Annie, good luck on what looks like a long journey. I hope your surgery went well. You will get out of PT what you put into it – maybe more, so hang in there. (BTW, the firt week or so of PT will be really frustrating, but you will get through it.) You hopefully won’t ever have this much down time again – maybe this is an opportunity to study something you never had the time for? It sounds like a long time, but it will pass, you have all of our best wishes.

    I am back at the gym exercising, no crutches, no wheelchair left, and having no real problems. the question is how long does it last? Hopefully a long time….

  38. Good luck with your surgery,Annie! I’ve been thinking of you! I have one more week of crutches from my second knee core decompression and stem cell surgery. I started swimming this week and I do laps for about 40 minutes a session. I’ll add the rowing machine once I’m allowed full weight bearing next week. It feels so good to be using that knee! Really decreases the swelling, although it does cause my ankles to hurt,for some reason. I had to get a wetsuit because the cold water rally made the joints ache.

  39. My diagnosis and surgery was done at Wexner University Hospital at The Ohio State University and they were amazing. Dr. Andrew Glassman was my surgeon when I had a total hip replacement just 10 months ago. I am a graduate student at Ohio State. It all took me by surprise. I knew I had some hip pain on and off for a few years and then it just hit me hard, couldn’t walk, couldn’t do much of anything without nearly crying every step. I went to the student health center on campus. Looking back, student health centers are not a place known for their diagnosis of such conditions and so I am all the more thankful. Dr. David Groen, super nice guy, checked out the rotation of my hip, sent me for x-rays, and then an MRI, and he diagnosed me with osteonecrosis within a couple weeks. Luckily, Ohio State has professors/surgeons of orthopedic surgery, and a comprehensive hospital as well as health insurance, so the process of recommendation and setting up everything was quicker than it is for so many other people. Like so many of you, I had had joint pain in the past (not nearly as severe as this time) and when I went to the doctors (at the University of Kansas) they dismissed me with a recommending ibuprofen and to lay off physical activity for a little bit. Part of me is angry they didn’t catch it back then, when I was about 23, but most of me is just trying to focus on today. To demonstrate how great they were at OSU I will share this last bit: I had hoped to have the surgery over the summer so I wouldn’t have to miss school but then I got up one day and the pain left me speechless in agony…as it turns out, my hip collapsed. I went in right away, they scheduled the surgery to take place as quick as possible. 2 weeks later I had a new hip and was living in a nursing home as a 29 year old (I do not have family in Ohio and I was living by myself so I had no choice but to stay in the nursing for the first month). I have to give credit to my amazing department too, the Classics (Greek and Latin) Department at Ohio State did my laundry, made me food, washed my dishes, came to visit me in the nursing home, and made this crazy thing a symbol of community. I am conflicted, confused, and often depressed about this disease, but I know that the orthopedic surgeons at Ohio State, the Laurels of Hilliard nursing home, and my professors and colleagues have given me a recovery that too few people experience.

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