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Thread: Heterotopic Ossification Specialist?

  1. #1

    Question Heterotopic Ossification Specialist?

    My son is 16 years old with an injury at T-2. While in the hospital he developed Heterotropic Ossification (HO) in both hips. His injury occured on 12/31/08 and the HO was diagnosed within six weeks. The HO in his left hip is quite a bit more advanced and greatly affecting his range of motion (ROM). We are having a very difficult time locating an Orthopedic Dr. or a Physical Therapist (PT) with a good understanding of HO. We are looking for a Specialist in the HO field that can be more descriptive to the many questions we have as it relates to day to day function, strenuous activity and the long term prognosis. Does anybody know where we can find that Specialist?

  2. #2
    It would be a big help if you would complete your profile so we know where you are (country? state?) and where you have been trying to find a specialist up until now.

    I know that the University of Alabama's Spain Rehab Center has been considered an HO specialty center in the past, but I believe that is partially due to the presence there of Sam Stover, MD, who is retired now. It would be a place to start, but any good physiatrist who is also board certified in spinal cord medicine should be able to help as well. Surgery (with an orthopedic surgeon) should NOT be done until the area has matured, which generally takes a year or more.

    Is he taking Didronel now? Getting aggressive range of motion?

    (KLD)

  3. #3
    We live next to Stanford University in Northern California. Our son had been working with a Physical Therapist who we are no longer working with, so for the last 6 weeks he has been receiving a non agressive ROM from my wife and I. He also has a complete workout 1 to 2 times a week at SCI Fit (Spinal Cord Exercise based Therapy). He has been taking Didronel since February (4-6 weeks after his injury) and currently is taking 1200 mg per day.

  4. #4
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    re: HO

    I had HO after my injury too. They had me on Didronel for a year and a half and now my arm is full of bone on top of bone thanks to HO and my hip snaps and cracks from too much HO there as well. Taking Didronel did NOTHING for me as now I'm lil miss HO. Anyway best of luck.

  5. #5
    I would recommend seeing someone at the Santa Clara Valley Medical Center SCI Center for help in management of your son's HO. A physiatrist who is also board certified in Spinal Cord Medicine would be ideal. HO is rarely managed by orthopedic specialists except if surgery is indicated (rare).

    (KLD)

  6. #6
    Quote Originally Posted by kel13 View Post
    I had HO after my injury too. They had me on Didronel for a year and a half and now my arm is full of bone on top of bone thanks to HO and my hip snaps and cracks from too much HO there as well. Taking Didronel did NOTHING for me as now I'm lil miss HO. Anyway best of luck.
    I took Didronel and had radiation treatments on my hip but neither helped. If the HO wants to take over, it's going to and there's not much you can do other than range to hopefully keep some movement (though even that only helps marginally). I'm going to eventually seek out surgery but even that is an uncertain procedure I'm told. When I do I definitely want the best surgeon I can find.

  7. #7
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    My husband has HO bilaterally in both hips. It is one of the worst cases the Doctors have ever seen. We saw Dr. Lietman at the Cleveland Clinic in Ohio. We had the HO removed in 2 separate surgeries a year apart, and had radiation done. Unfortunately the HO came back in both hips and just a bad as before. I was told that once it comes back that means that it will continue to return no matter how much radiation is done. I have also found a Dr. at Vanderbuilt that is doing research to find out what causes HO. Her name is Dr. Erika Mitchell. I am sending her all of my husbands medical information from since his accident and she also wants a DNA swab from his cheek. I cannot put my husband through another surgery until more information is found out about HO. I will help Dr. Mitchell anyway I can to get her information so she can hopefully find a cure for this disease. I e-mailed her and she e-mailed me back. You may look up the article at the internet address listed below. It is public record.

    "www.vanderbilt.edu/magazines/vanderbilt-magazine/2009/03/military-grant-spurs-bone-regrowth-study/"

    I hope this helps.
    Last edited by snookem63; 07-31-2009 at 08:35 PM.

  8. #8
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    Here is the response I received from the Dr. doing the study at Vanderbuilt

    "I’m sorry to hear about your husband’s accident. As an orthopaedic trauma surgeon I see this everyday, but I continue to be struck by the strength and support that families give their loved ones with TBI. Your e-mail tells me that you are one of these remarkable people."

    "As you know, HO is poorly understood and difficult to treat. My hope is to at the very least begin to understand the process so that we can then prevent the disability that comes with the condition. I am thrilled that you are interested in participating. I do not yet have a repository for patients outside of the Vanderbilt system, but I am working on this. Your help would involve providing me with medical records including x-rays and a cheek swab for DNA. I would like to use DNA from patients like Gary to verify our findings. Thusfar, we have identified three genes that seem to be associated with the production of, or protection from, developing HO. The research is still very early in the process though."

    "Let me contact our review board and determine the paperwork and storage of outside samples. I greatly appreciate your willingness to help. And I admire your strength through the difficulties of your husband’s medical condition. Expect to hear from me in the next couple of weeks. If you don’t, please feel free to send me a reminder as I admit that between surgery and research, sometimes I forget things. "

    "Thank you,
    Erika"



    You can look up articles about her study by searching the interI hope this helps. I'm putting my husband in this study.
    Last edited by snookem63; 07-31-2009 at 08:49 PM. Reason: To make sure I'm not stepping on anyones toes.

  9. #9
    Is the above post a quote from a letter? Do you have the writer's permission to post it? It should have been posted as a quote as such, as it appears you are the writer and are asking that others on this forum mail you their medical records. I hope no one is foolish enough to do that. Please edit your post accordingly.

    (KLD)

  10. #10
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    Sorry for the mistake I will be more careful in the future. I have added the quotation marks and it was from a letter e-mailed to me. It didn't say anything about not passing what I have learned onto others. I guess I was over excited to pass on information I have learned because I have been looking for help for so long and I know how hard it is to find anything that could help with this disease that I wanted to share with others.

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