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.”

122 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

  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.

    • 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

      • 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

  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

    • 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.

    • 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.

    • 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

    • 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)

  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

  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

  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.

  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

    • 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?)

    • 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

  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?

    • 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

      • 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!

  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

  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.

    • 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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