View Poll Results: Heterotopic ossification and effects of medications (Didronel, etc.) on progression.

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  • I have HO. The medication has not changed anything.

    7 25.00%
  • I have HO. The medication is preventing progression.

    2 7.14%
  • I have HO. The medication may be reversing the condition.

    0 0%
  • I have HO. The medication is definitely reversing the condition.

    1 3.57%
  • I have SCI but don't have HO.

    18 64.29%
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Thread: Heterotopic Ossification

  1. #11
    Senior Member cali's Avatar
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    i have burning in my hip but i was told it is from my arthritis. i also have some extra fluid in the joint but i was told that it doesn't pose a problem.

    i have some HO in my muscle on the inside of my left leg. they said it happened probably when i had damaged the muscle. (i had tiny lacerations in the muscle along with little fluid sacs in them) my body left behind the calcium after healing it. it isn't much and they said if it got bad, they could give me meds with a patch i could put over that area to dissolve it.
    Never take life seriously, nobody gets out alive anyway

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  2. #12
    Senior Member cali's Avatar
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    Quote Originally Posted by Jeepin
    Worse part of Didronel was that you have to take it on a empty stomach. No food 2 hours before or after. I was taking it twice a day.....meaning no eating for 8 hours.

    Didronel isn't proven to actually help HO. But the theory is it lowers the Calcium Phosphates which would then lower the chance of HO spreading.
    wouldn't that increase your chance for osteoporosis?
    Never take life seriously, nobody gets out alive anyway

    Frank's blog:
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  3. #13
    Hey guys. For those using Didronel:

    Has Didronel helped to slow HO growth?
    Side effects and anything specific related due to SCI?

  4. #14
    I started my Didronel script In November. Four pills a day for two weeks, now two pills a day for ten weeks. I noticed pain relief being on four pills but I felt sick to my stomach a lot. The nurse told me to eat when taking the pill; at least milk. Now, two pills, I hardly notice any relief. This H.O. crap is getting old and feels like its growing, n leg sticking out. Zanaflex n bachlophen helps provides a little relief in my hip if my spasms are tight. Still use a heating pad at night on it and ROM in AM b4 dressing. I saw all my arthritis on the bone scan (dark spots). No wonder why my hips hurt so bad some days its aweful. Its my understanding Didronel is on of the "first" steps in treatment?

  5. #15
    I was really touched by what i read about your story it sounds a bit like myself i have H.O of the hip and is presently in a nursing rehab center where i have been for the last 3 years. my story is very long but i would have to send it to you oneday if you are interested. i woke up from a coma 3yrs ago and was in this rehab. to make a long story short i have a 12yr old son i want to get back to and take care of and i meet a wonder woman whom i believe i really am in love with . i am to have this surgery soon but first i most have another sugery to close a ulcer on my back from where i was poorly taken care of in my coma i live here in atlant,ga and this is the first year i see glimmers of hope of moving on with my life or get my life back. am only 31.and i am greatful to have read your story i can only pray that they do the H.O sugery on both of my hips at the same time.and i regain my ability to walk again i so much want to walk to my son again.i would love more information on the doctor who you mention you can email me.
    Last edited by SCI-Nurse; 06-09-2009 at 10:57 PM. Reason: Remove personal e-mail address

  6. #16
    J. Burney, welcome to our forums. I removed your personal e-mail address as it is unwise to post this on a public forum. It leaves you open to spam-bots and cyberstalkers. Members can send you a PM or e-mail through the site without seeing your e-mail address.

    Have you had tests to determine that your HO is actually mature? Surgery should not be done before then.

    If you are also having a flap for a pressure ulcer, you have a lot on your plate right now. It might not be the best time to consider getting married, esp. as this can adversely effect your benefits and medical coverage (unless you have private insurance).

    Did you have a formal SCI rehab program at all or did you only go to a nursing home with some therapy?

    (KLD)

  7. #17

    Hello over there in Metarie, Jerry - Are you still active on this Forum?

    Quote Originally Posted by JerryF504 View Post
    I had HO also, but mine was more in the knee area. My doctor is in New Orleans so it took awhile for me to get to see him. He put me on Didronel & so far the bone has stopped growing. I'm sure my ROM was affected because when I bend at the knee it doesn't come up as high as it did before the HO, but they do straighten out all the way.
    --------------------------------------------------------------------------------------
    May I ask, who is a HO *knowledgeable*/experienced doctor in New Orleans, please? We are 'desperately seeking' a knowledgeable physician to treat HO. Over here on Gulf Coast East, most docs respond: "Never heard of it." End of discussion.

    Many thanks for any suggestions, please!

  8. #18
    From a previous post, "Kyle Dickson who use to work in New Orleans and was a great
    orthapedic surgon". I don't know his address or phone number, or honestly if he is still practicing, but the people who have used him have been very impressed with him.

    CKF

  9. #19

    Hetrotopic Ossification

    Oh my gosh I am so happy I have found people talking about this condition. I am 33 years old, and had to have to hip surgery's last year due to a genetic growth on my femur that tore my labrum's. Now, only about 1 year post op I have HO, in both my hips. I live in Northern California, and doctors here don't really see it. I have been looking all over for a good doctor, that know how and when to treat it. I have constant pain, my hip sticks out a little bit and bending over is becoming a challenge. I am a mother of a beautiful 3 year old and running is his game! This, is limiting me but I try not to think about it. I just got referred to UCSF, does anyone know of a good doctor there or somewhere near here? Any help will be greatly appreciated!

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