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.”

169 thoughts on “Doctors”

  1. For, ON of the ankle and talus, I’d recommend any of the people on a list:
    either: https://www.orthocarolina.com/assets/user/news/Orthopedics%20This%20Week%20-%20Extremities.pdf or
    http://ryortho.com/2013/10/the-26-top-foot-ankle-surgeons-in-north-america-2013/ ON of the talus is hard to treat and these people will explain your options. Many of them will look at your films and consult over the phone. They do a bit of thinking outside the box and won’t stop until the job is done.

    In many cases (so I’m told), that there is one contraindication to ankle rreplacement: osteonecrosis /avascular necrosis. Well, these guys are good, and won’t take no for an answer. You owew it to YOURSELF to have somone work on your ankle who has shown expertise, but someone didn’t have to be in the above lists to be good.

    I can personally recommend Dr. THomas Eteven Haddad, Dr. Michael K. DeOrio (Duke), Joh Reach (Yale), Thomas Clanton(Vail), Dr. Stedphen Haddad (outsid of Chicago.) j

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  2. I am in my late twenties female. A doctor just diagnosed me with Stage 4 AVN. Went to see other doctors who only recommend using crutches for 3 months and come back if the pain persists. I dont think that advice was useful since this pain has been bothering me since 2013. I am frustrated because in DC area there arent many places you can go and get treatment for AVN. Has anybody found a good doctor in this area? Considering DUKE for Free Vascular Fibular Graft, anybody familiar with the process? I am extremely happy that I finally found a community of people who can understand what I am going through.

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    • Hi, My son had fibular grafting at duke ( Dr Ruch)last year.his surgery has been very successful, but that is not always the case. It is a difficult recovery. Sorry I didn’t see this sooner. Am happy to discuss w you. Also perhaps stem is option for you?
      Peg
      Gloflin1 at bellsouth.net

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      • Peg, I was just diagnosed with AVN and a doctor in Michigan is able to do the surgery. What is your son’s experience with the process? Did you go see multiple doctors and why did you choose Duke? Any help would be appreciated!

        -Lauren

      • My 15 yr old has AVN. Looking into the very same graft. Would like to speak with you regarding his experience & see what grade he was. Thanks! P.S. Sent email

      • Hi Peg,

        I have AVN of the Talus. I would like to talk to the Dr you found in MI, can you forward his information,

        Thanks,
        Sue

      • I don’t think I know of a MI doc….

        Annie might have more info on Talus.

        RJ Sierra is at Mayos in Rochester..but don’t Know if Talus is something he is comfortable with…

    • YES! I realize I’m a bit late, but the doc I’d REALLY AND WHOLEHEARTEDLY, and many people wouldn’t disagree with me, would be Dr. De Oreo (Duke). I was referred to Dr. De Orio and a few other docs, didn’t chose him because of geography. Since then, I’ve heard of his stellar reputation; I’d still see my doc whom I chose instead, but Dr. De Oreo is up there. I think it’s Dr. Michael De Oreo, not positive.

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    • I broke my talus bone on my right foot 13 years ago. I went years without surgery or any help from Kansas doctors they had no clue how to fix it. Last June I was diagnosed with having AVN in that foot and found a wonder doctor in Baltimore Maryland. Sure I had to travel several times to see him over 1800 miles one way twice we flew but he did my surgery and done a beautiful job of cleaning out the AVN the arthritis and bone spurs unfortunately he did have to fuse my ankle his name is Dr John Campbell foot and ankle reconstruction orthopedic and I highly recommend him. He’s located at Baltimore Mercy

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  3. Hi,
    I have AVN of the right hip, and am not eligible for hip replacement (my body rejects hardware). It seems I am too late to go to Dr. Einhorn for stem cell therapy, as he no longer practices medicine. I am stage two and am scared of what to do now. I’ve already had a core decompression and vascular fibular graft years ago. Do you know of any doctor working with similar procedures as Einhorn? Either at Boston Medical or otherwise?
    Thank you so much
    Maggie

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    • Did you find some other docs to consult? There are several doctors who do stem… Check the doctor list here on this site… Also recently heard patients having stem surgeries w dr Sierra at Mayos , dr Dan Omar- Rei at University of Colorado.

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    • Maggie, Dr. Cynthia Kelly in Denver does. She’s with the Denver Clinic on Limb Preservation on 1601 19th St. in Denver, CO. I’ve since moved from the area, but she said she’d do my hip if it ever needed repair. Now it does only I’ve moved. I really like my new OS, though and have surgery scheduled for the fall.

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    • I met with Dr. Einhorn in October, 2015 to discuss BMAC procedure. He works with physicians @ NYU. Ph: 212-598-2775 for appointments. Good luck! Tina

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    • There are several docs doing stem:
      Dr Cynthia Kelly ( Colorado)
      Dr RJ Sierra (Mayos – Rochester)
      Dr Dan-Mei ( Colorado)
      Maybe Dr michael Monte( Baltimore Sinai Hospital)

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      • Dr. Mont is leaving as July 2016 to head some hospital in Cleveland, Ohio. He’s been my avn Dr. for many years and is very good. His leaving is why I’m on this site.

  4. Kirsty, I can recommend a J. Dean Cole (he’s near Orlando, I think). He’s put a friend of mine ‘back together again. His specifics escape me, but if you’d really like to know, I can find out and get them to you. Just let me know at anowlin@mac.com

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  5. You can’t go wrong at Duke. I know of the ankle docs, but I’ve another list and will post here after I look up my docs. But I can tell you that there’s an Andrew Brief in Ridgeview, NJ. (or is is Ridgefield?) who is KNOWN to be good. I know that there are more, but off the top of my head…Oh, ______Huntzinger or Huntzerfeld in VA somewhere. But I’ll get back to you. Annie

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  6. who is the best for lower leg. tib, fib, ankle. I am military and need some help before i amputate. Currently in the IDEO and last surgery doctor said my area is way too big for graft and micro does not work in any of my previous 7 surgeries.

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  7. My Name is Adelaide and i live in Accra, Ghana.
    My 13 year old sister has been diagnosed with AVN. Doctors in Accra say this is because of the fact that she is a sickle cell carrier. They are recommending both hips be replaced. she was diagnosed 6 months ago and she seems worse everyday. Is there any foundation or hospital that offers some sort or assistance? I cannot watch her deteriorate because of lack of fumds to pay cash. – Thank you, Adelaide

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    • She likely needs a pediatric orthopedic and a Hospital prepared to deal with SC as well.

      1)Dr Harry Kim Extension 7877 Texas Shriners (214) 559-7439

      (800) 421-1121

      2)Dr Shawn Standard: Baltimore MD Sinai hospital:

      sstandar@lifebridgehealth.org

      3)Dr Jonathan Schoenecker Vanderbilt Nashville TN (615) 343-5875

      Childres Hospital Vanderbilt 2200 Children’s Way Ste. 4202 Nashville‎ TN‎ 37232 United States jon.schoenecker@Vanderbilt.Edu

      Peggy Loflin 865-661-6900

      4) duke Durham,NC Dr David Ruch Possibly if interested in FVFG (919) 660-6434

      I have other contact for duke if you are interested.

      5) dr Cynthia Kelly Colorado ( have a fund for people who can not afford) 1 (303) 928-8849

      KBurke@co-ortho.com

      6) St Jude’s hospital Memphis, TN ( not known for orthopedics,but might be helpful financially?)

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    • She likely needs a pediatric orthopedic and a Hospital prepared to deal with SC as well.

      1)Dr Harry Kim Extension 7877 Texas Shriners (214) 559-7439

      (800) 421-1121

      2)Dr Shawn Standard: Baltimore MD Sinai hospital:

      sstandar@lifebridgehealth.org

      3)Dr Jonathan Schoenecker Vanderbilt Nashville TN (615) 343-5875

      Childres Hospital Vanderbilt 2200 Children’s Way Ste. 4202 Nashville‎ TN‎ 37232 United States jon.schoenecker@Vanderbilt.Edu

      4) duke Durham,NC Dr David Ruch Possibly if interested in FVFG (919) 660-6434

      I have other contact for duke if you are interested.

      5) dr Cynthia Kelly Colorado ( have a fund for people who can not afford) 1 (303) 928-8849

      KBurke@co-ortho.com

      6) St Jude’s hospital Memphis, TN ( not known for orthopedics,but might be helpful financially?)

      Please let me know how it goes. Best, Peggy Loflin Gloflin1@bellsouth.net

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      • Thank you so much for the contacts. I have been reaching out to them and most have asked us to share her medical documents. Many Thanks for sharing. Will keep you updated on how it goes.

  8. Have an 18 yr old son just diagnosed and have an appt with a dr Stuart Goodman at Stanford I have no idea what stage my son is in I believe I was told it was “early stage” he has this bilaterally and we are also idiopathic. Has anyone gone to this doctor or have a similar set of circumstances?

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    • Not similar, just had son with one side. Had FVFG at duke when he was 15. Not familiar with that doc, but look for experience with stem and other alternatives to Traditional core decompression and replacements. If they are not experienced with stem and other limbsaving surgeries,I Would look further. I also would ask about how many similar cases they have done as well as how many of this type of surgery they do a month or year.

      Avoiding a plain traditional core decompression I think is more than reasonable.

      He is so young, I know it’s tough, but the more he can stay off the hips, the better preserved. Swimming and recumbant bike is good. Also the therapy trainer or other arm ergometer.

      Peg Gloflin1@bellsouth.net

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      • Peg, I sent you an email from L.N.price@hotmail.com. I would love to talk to you about what you Son went through since I was diagnosed in November and Doctor is suggesting Fibular Bone Grafting. I would love to talk to you about your sons path and progress!!!

  9. Does anyone know of a doctor for AVN in Richmond va? Still recovering from left hip replacement 2012! Can’t do a leg lift!

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  10. I am not familiar w Stanford doc.

    Closest I know of to you is Dr Cynthia Kelly in Colorado.

    My son had surgery at 15 atDuke.
    It’s very tough. My thoughts are with you and your son.

    Feel free to contact me or my son:
    Gloflin1@bellsouth.net

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  11. Are you aware of any docs in Michigan who do the stem cell treatment for AVN of the hip. I was just diagnosed in Dec and the ortho recommended non weight bearing for 3 months.

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    • Katherine I live in Michigan too and was just diagnosed in November. Going through this with you as well. I would love to talk with you about what you’ve went through so far and maybe we can help each other! I am 27yrs old and have seen UofM Orthopedic and St. Joes Orthopedic. Please contact me at L.N.Price@hotmail.com!

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      • I was also just diagnosed, I’m 32, in the last couple of weeks, it sounds like I am Stage 1 in my left hip, which they show very slight due to the MRI they did for right hip, and stage 2 in my right hip.

        My Orthopedic doctor advised me to do no high impact activities like running, jumping, basketball, etc. and then hope it revascularizes. He suggested following up in 6 months if my pain or symptoms increased or changed.

        I’m really not a fan of the wait and pray approach. I have been looking at the stem cell procedure the Mayo clinic does and am curious if this might be a good idea to prevent from advancing beyond stage II in right hip.

      • Derek, personally, I would not wait. The research I did showed very little ‘cure’ from waiting, about 30% from decompression alone, and double that for the small ample of people who had decompression with stem cell. There are some that use purchased stem cells, and some that take your stem cells from the pelvis, spin them to increase concentration, then fill the hip with your own stem cells. My reading showed that was both the lowest risk, and highest recovery, admittedly on a smaller group of subjects.
        I took the recovery very seriously. After the surgery I used crutches for 6 weeks. Half way through that I did very low pressure stationary bike riding for mobility, about an hour a day. After 6 weeks I slowly began body weight and then weight lifting and hip exercises, non impact 5 days per week. It took 2 years for all the minor pains to go away. It has been 3 years, I ski, exercise, have no pain, and show no advancement in the disease. The area that was decompressed looks like solid new bone. The areas around it that had AVN did not fully heal, the healed part is large enough to give my hips the strength. The surgeon thinks this slow healing around the now strong core area will continue for 4 years, and will probably not reverse everything, but it is not advancing, and the majority was removed and regrown.

        One final point, my GP tested me for every known illness that causes AVN and all were negative. I think this information helped me to know there was a shot to cure the problem and it was not just a symptom of a larger problem. It also made things easier with the Ortho when they saw he AVN was not a secondary condition.

        Best of luck with your decisions and health. Steve.

      • If you are young (20-30’s) please get 2-4 opinions. I saw a Dr. Lareau in Chicago and he was my 4th Opinion on what was going on with me. All other Radiologists said I had AVN and the first 2 Dr’s opinions just guided me a Fibular Bone Graft but the 3rd Doctor I met with thought it might be something else due to my age and that I had this in both hips along with Hip Dysplasia. He pointed me to a Dr. Lareau in Chicago who is a Hip Preservation Specialist and after consulting with Doctors around the U.S. he confidently knows that I do NOT have AVN and my problems are due to my Hip Dysplasia. I urge EVERYONE to go see him and get a 2nd, 3rd, 4th, 5th opinion!! I still have to have reconstructive surgery but we are now fixing the problem as well so that this never happens to me again. So no need for a Fibula Bone Graft!

        http://www.hinsdale-orthopaedics.com/physicians/justin-m-lareau-md

      • I have AVN of the Talus. What Dr. did you go to and did you like what they are doing for you?

    • Kathryn, Lauren, I wish you the best of luck. I was diagnosed 3 years ago with bilateral hip AVN, and slight depression in left hip head. Met with 5 drs, 3 suggested replacement, 1 decompression. Met with Dr Einhorn at boston Medical, now practices in NYC. He did a bilateral decompression and stem cell placement using my cels (from pelvis) into both hips. 4 hr surgery. Limited pain and limited medicine needed after. Did 8 weeks of limited to no weight bearing, followed by a year of training, light to heavy weight bearing exercise, etc. Have had 3 annual check ups, no re-occurrence, No pain, no limit or motion, very strong. There was no underlying cause found in my case – the diagnosis was based on hip pain with exercise, xray and 3 mri tests. We’ll see what happens in 5 years but at 3 years I am 100% symptom free with no disability. I am 60 years old. Sooooo – I am a believer inn Dr Einhorn. I did travel to the hospital, spent 1 night at hospital and 1 i hotel before being driven back to NY. I hope this is helpful. I am not certain but I think the no weight bearing, and then disciplined weight training may have helped with the bone growth. or I was just lucky. Best to you, I wish the same for you. Steve

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    • We just found a dr in Michigan. Have a member on another site: Dr David Mayo, I think.. Not a lot if info. Only that he just did stem on her in november 2016

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  12. Steve,

    I completely agree and am not waiting. I’m not going to sit around and wait for my femoral head to collapse and then to have no option except hip replacement. I’m currently going through blood tests to see if I have any underlying conditions that could be contributing.

    I’m also in contact with a few places about getting a stem cell treatment done. I am only praying that I get some answers and get something done before it’s too late on he right side. The thought of total hip and multiple revisions is just awful.

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  13. If you are young (20-30’s) please get 2-4 opinions. I saw a Dr. Lareau in Chicago and he was my 4th Opinion on what was going on with me. All other Radiologists said I had AVN and the first 2 Dr’s opinions just guided me a Fibular Bone Graft but the 3rd Doctor I met with thought it might be something else due to my age and that I had this in both hips along with Hip Dysplasia. He pointed me to a Dr. Lareau in Chicago who is a Hip Preservation Specialist and after consulting with Doctors around the U.S. he confidently knows that I do NOT have AVN and my problems are due to my Hip Dysplasia. I urge EVERYONE to go see him and get a 2nd, 3rd, 4th, 5th opinion!! I still have to have reconstructive surgery but we are now fixing the problem as well so that this never happens to me again. So no need for a Fibula Bone Graft!

    http://www.hinsdale-orthopaedics.com/physicians/justin-m-lareau-md

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  14. I am 29 and was diagnosed in 2015 with AVN. Met with 4 doctors in DC, some suggested no weight bearing and core decompression. In NYC, I met with Dr.Edwin Su at the Hospital for Special Surgery and now I am deciding on getting total hip replacement on my left hip and possible core decompression on my right hip. None of the doctors mentioned stem cell. After reading everyone’s comments here, I feel like total hip replacement is the LAST resort and I am afraid to go through this process. Has anyone had experience with HSS?

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  15. I was just diagnosed with AVN in both hips. Does anyone know a doctor in Chicago that does stem cell core decompression? Thanks

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  16. I am 47 year old just diagnosed with AVN of my shoulders. I was referred to the South Texas Bone and Joint Center to Dr.Breckenridge and he basically said the same thing that my primary doctor said. I was sent home and told to come back in a month. What? I am not going to sit around and allow my bones and joints to die. Does anyone know of specialist in the South/Central Texas area that can help me?

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  17. Hello my name is Jackie Browning I’m a 36 year old woman 12 years ago I was in a car accident and broke my right talus bone in my foot the orthopedic out of Lincoln Nebraska that I seen in Marysville Kansas didn’t perform any kind of surgery just took me off weight baring and put several different casts on it throughout the years I’ve had nothing but problems with this foot I have a limp and my bones in my foot are very tight and don’t move well recently June 6th I was working at my job which is at hog farm in the farrowing department and ideas trying to save a baby piglet from her mother sitting on her and the mother sow got upset and pinned my foot against the inside of her pin she didn’t break anything from the X-rays they did but she did crush it and I have a horrible contusion is how the doctors put it they did a MRI on it and found out I have avascular necrosis and micro trauma I’ve been denied to be seen by 3 orthopedics and the mayo clinic out of Minnesota I did recently have a orthopedic out of Salina Kansas actually see me after all this time and he thinks I possibly have RSD so he prescribes me nurotin 300mg 3 times a day then August 12th I go to get shots put in my foot to try and help things I haven’t walked for 2 months today on this foot I’m still in a cam boot and crutches in reaching out to you today to please try and help me I’ve gone to my own doctor and they’ve tried helping me by referring me to KU Med out of Kansas City but they can’t get me in to see a doctor until January 10th 2017 I live in Waterville Kansas so not much for help in a small town the first two orthopedics that denied me was from Manhattan Kansas and the one I finally seen in Salina told me why I’ve been denied its because he said there not advanced enough to help me in any way and that my foot is destroyed I will not give up and stop looking for help and I refuse to lose my foot due to no help thank you for reading my story

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    • Jackie,

      Sounds like you’ve been caught by seeing a lot of people with varying diagnosis and plans, but it’s good that they’re settled on a diagnosis, even though AVN talus has limited options.

      I have AVN/ON (I prefer to use ON-shorter!!) of the talus and before I had a total ankle replacement in 2013 for ON of the L talus (I still need to have the R done), I consulted a few docs and asked if they could help (my doc was a foot/ankle specialist and he said that nothing would help).

      One doc said that fusion was my best option, but if there were complications, amputation may have to be done. That was a non-starter for obvious reasons.

      Another doc said my only option would be to be COMPLETELY off of it for 3 months. But then I was told that might not work-so I put the kabosh on that thought!

      I consulted a podiatrist who has a good national reputation, send him my films and a brief medical history and he called me one night and told me what he could suggest. But, I never acted on his suggestions. Probably because he was across the country.

      Then, I consulted a fellow from Yale, after sending my films to him, as well. He called me and said that he could offer a lot of things, but that he was 1800 miles away; why not see someone closer and he gave me the name of a fellow in Colorado.

      I sent the fellow in CO my films and saw him and he said that the thought that a total ankle replacement was my best option, but that he didn’t think he was the best qualified (short for ‘are you prepared for honesty?’), but he gave me the names of 2 people who he felt were. Dr. Steven Haddad outside of Chicago and Dr. Michael De Oreo at Duke. Dr. Haddad replaced my ankle in 2013 and it is FINE now.

      I had a replacement. These guys will tell you all your options and which they think will work the best for your lifestyle and why. There is a list that is maintain by google: https://ryortho.com/2013/10/the-top-26-foot-ankle-surgeons-in-north-america/ There are obviously a lot of names left off the list, but you can’t go wrong with any of these guys; it is just that not everyone can make a short list. Ask and ask and ask, but don’t settle. Your ankle is too important-when you think of it, you’re on it all the time!

      Out of personal experience, I could recommend Dr. Bradley Lamm (he’s the podiatrist), Dr. John Reach (Yale), Dr. Thomas Clanton (Vail), Dr. Haddad (Glenview, IL-outside Chicago) and Dr Michael De Orio (Duke). There may be travel involved, but this is your ankle.

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  20. THere is a doc, named Stephan Kreuzer in Houston, whom a lot of people have been to and like, a Dr. Marcos Masson, also in Houston. I don’t know what they specialize in (something tells me that Dr. Marcos specializes in hand ON) but I don’t know about Dr. Kreuzer

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  21. I have ON in the same places in addition to both femurs and hips. Both hips have been replaced but I need a new cup on the right because it didn’t grow right 3 years later. I am a 59 yr old female. Not having any luck finding a doc other than who will operate one joint at a time. Not my best option but no others have been presented. Cannot even get my primary doctor to address pain and mobility issues, or lack of. I live in Portland OR. Any help would be much appreciated. I am desperate!

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  22. Does anyone know a doctor in Atlanta? Just diagnosed with AVN of both hips. Stage 1 on left and 0 on right. Do not want todo surgery. Feel certain caused by 3 mos High dose Prednisone use. Have pain in knees also but they havent had MRI yet. should I be having so much groin pain with such low stage of disease? Thanks for any help you can send my way.

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  23. Hi. I am 55 and have been diagnosed with AVN in my femur close to my right knee. (I also have a torn meniscus in the right knee). FYI_ 2 years ago I had a torn meniscus in my left knee and had it surgically repaired successfully. So I went back to my orthopedist that had fixed my left knee but he is not a specialist regarding the AVN. I have now been on crutches for 2 months. after 5 weeks I tried walking again but had severe pain – I believe due to the AVN (not torn meniscus) but cannot be 100% sure. I am back on the crutches but feel some discomfort in the femur. I live close to NYC and noticed Dr Joseph Lane referenced above but wondering if anyone recommends him or anyone else in the New York City area?

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  24. *sorry about my english, i don’t know the language very well*
    After recovering from luekimia at 2012 i was dyegnosed with AVN at all the big joints. I felt pain especially at the shoulders and hips. I had replaced my right hip with a synthetic one three months ago.
    I was seposed to replace the other one next week but i started to feel drastic pain in my right ankle. The doctors told me the avn in my ankle has progresed and now the ankle is fucked and there is nothing that can be done to help it. They recommended air cast but it didn’t work. I can’t even walk a few steps because the pain is so hard. I am in a wheel chair all day long. I am hopless. Please help me.. I am only 17 and i can’t be in a weel chair for the rest of my life. Do you know a doctor that could help me even tho thw avn has progressed? I don’t live in the USA and in my country there aren’t any doctors that can help me. Please i beg you.

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  25. I have a few questions… I was recently diagnosed with AVN of the left knee more specifically the medial and lateral condyles of my femur and the proximal tibia meaphysis. It was found by accident due injuring it at work. I had a patellar subluxation. The AVN shows very well and large on the X-ray done on 6-6-16 however there were no signs of this disease on 2-16-16. I have seen an orthopedic for the subluxation but he wasn’t comfortable even discussing the AVN he referred me to another Dr. 10/10. I am reaching out on my own to be seen. I am a nurse so i have been doing my research. My primary care referred me to hematology oncology. I was Dx with Factor V Leiden and Factor II Prothrombin Gene Mutation. So we are pretty sure we know the cause. I want the best possible out come for. I am trying to get in with Dr Stephen Olsen at Duke. I live in NC about 30 minutes from Duke, and UNC. about 1 hour from Winston Salem which has the Baptist system. Do you have any recommendations?? I had to start blood thinners. I am 36 years old. I am active. I am on my feet for a living. As a nurse, I really haven’t heard of this so i don’t know very much about it. Any help is very much appreciated!!!! Thank you!

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    • I’m 54, live in GA, closest rheumatologist is > 100 miles… what is hematology oncology, And did they do the tests mentioned that are /were what Dr Glueck did for the founder of this blog?

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  26. Trying to find a doctor for my daughter with bilateral knee AVN and fx hip. Surgery for core decompression a last year and the pain is back. We have been waiting for a response from Dr Kaunjan from John Hopkins hr it’s been 5 weeks with still no answer. Anyone know a good doctor? Thank you

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  27. Hello. I am a 32 year old female living in Lagos Nigeria. The doctors recently diagnosed that I have AVN in my right hip caused by the SCD condition. One doctor recommended core decompression and from what I have read, that does not help much. Please does anyone have any advice?

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  28. I have osteonecrosis, bilateral femurs and tibias. I have not been checked if it is anywhere else. I’m looking for as many answers as I can to assist in my healing. It is very painful and I have had 2nd opinions both of which have denied surgery for total joint replacement on both legs according to my age, 43. Please, I’m at a loss here. My Dr’s do not know how else to deal with a case like this. I hope this reaches someone who can help. .please and thank you!

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  29. Thank you for your helpful website to address alternatives to surgery for AVN. I was diagnosed on January 25, 2017 with bilateral avascular necrosis which was discovered during a kidney stone CT scan.. I am a Black female, 61 yr old military veteran. I’ve been complaining for over a year about pain from walking, standing, driving only to have been told it was due to an auto accident in April 2014. I do no have diabetes nor do I have HIV or lupus. I’m not a drinker. My VA doctors do not know what caused it. I hope today to find out what stage the disease is in. I’ve consulted with two doctors, both want to do total hip replacements, but I’m not sure that’s the right path for me without further answers to the real cause. I contacted the Mayo Clinic in Jacksonville FL last night, they do stem cell, if in Stage 1 or 2 from my understanding of what’s on their website.
    So far, acupuncture is providing some relief for me. If you know of any doctors in St. Petersburg FL, to recommend, it would be greatly appreciated.

    Faith for the journey,
    Jean

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    • Hi Jean, good luck on this. I had bilateral stem cel after decompression by dr Einhorn in July 2013 at age 58. I am now 62, zero loss of function, very active. Some random pains for first year. Still get some soreness but goes away in 1 day to 1 week. Never need medicine.
      Checked for all possible causes, none found.
      I did find I have some cholesterol plaque in other veins so may be the cause.
      Like you no drugs, limited alcohol, active, no disease. ( maybe too much ice cream. ). One dr thought it could have been caused by long, high altitude heavy back packing.

      In my case 4 doctors recommended replacement. Einhorn did surgery since there was no flattening of head. In surgery he found flattening and said in retrospect he would not have operated on that hip ( left). But it worked.
      I do a lot of hip exercise. My left is always slightly weaker and slightly less stable than right. However total strength is higher than before surgery.
      After surgery I was very conservative and used wheel chair and crutches for 6 weeks. Then began daily exercise. X-rays at 6 mos, then annually. Can now ski, bike, hike, exercise. I don’t run long distances anymore though.
      Einhorn was in boston, has moved to NY.
      You are young and replacement has a 15 year +/- life so you may need to do it again. My thinking was if this got 5 years it would be worth it. I am now thinking it may be much longer.
      I hope this helps. Good luck to you… Steve

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  30. My husband and been diagnosed with AVN in all his joints we are trying to find the cause Hemochromatosis has been ruled out.So has liver problems, we are still searching for answers. Any help would be appreciated his ortho doc will not do any of the six replacement that are needed until we are sure that he will make a good recovery. Other than high ferritin and elevated high level his blood work is good.

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