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Thread: Heterotopic Ossification ---RARE!!! HELP!

  1. #1
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    Heterotopic Ossification ---RARE!!! HELP!

    Hello there,This is my first post on this site, and I hope that I am not out of line posting here. With that said, I am at a loss finding the answers and from what I have learned after hours and hours of research online is that I am one of 2 cases reported, me being the 2nd person that is unofficially reported so its 1 case in reality. I do not have a SCI, or have any ailments that seem to be the cause of this condition. To cut to the chase. The last orthopedic surgeon that saw me took xrays, then took CT scans. The results of the scan showed the formation of a bone on my wrist just above the distal end of my ulna bone in the pocket. He said I had HETEROTOPIC OSSIFICATION in my wrist, usually caused from an injury, or surgery or Spinal Cord Injury however he mentioned he had never see one on the wrist. The interesting thing is I have never broken a single bone in my body or never had any major injuries so it didn't make sense to me.Before you jump and say ganglion.. please read.I am a healthy 42 year old female currently living in Northern Saskatchewan, Canada, so yes I have access to free health care and in addition I have an amazing health plan with my employer. However, no Doctor will even take a second glance at me, and I think it is more along the reason that they just dont know what to do. I have seen 3 GP's, and 4 orthopedic surgeons, 1 of which laughed at me and said I was confused, 1 that nearly tore my wrist apart, and one that actually listened, took xrays and CT's and shook his head and said I dont know, then wouldn't return another phone call. It was a very strange experience because when he first told me what it was, he was excited, excited like I have never seen a Dr.. He was clapping his hands and rubbing them excitedly saying he couldn't wait to cut into that and look at it up close. I probably would leave this alone if it didnt cause me so much pain and affect my life as much as it does. The first Orthopedic Dr I saw felt the bump on my wrist and laughed at me and told me it was my ulna bone, proceeded to show me his, and informed me everyone has this and its all in my head and dismissed me. NO KIDDING! The 2nd one said I had a ganglion cyst which made sense to me, and given the fact it was causing me pain he would aspirate it. He administered a local, got this HUGE scary looking needle and poked at this bump for 45 minutes. It bled.. a lot, but zero fluid so he referred me to another Dr. The next Dr had the scans done and as I mentioned he was purely amazed at his find in my wrist telling me its a bone that grew there for the hell of it. I felt special for a moment. The pain I can rate at a constant 4 to 5 out of 10 daily, at all times. The dull aching pain never goes away. If I hit it, bump it, move it the wrong way, fall on it, try to do a push up, or use it to prop myself up, or if someone grabs that wrist.. its an explosion of a 9 or 10 level and usually makes me scream out. It passes quickly and aches around the 6 -8 range and within 30 minutes settles back to the dull ache. I feel like gnawing my wrist off. I feel I am losing my sanity and I just am at the point that I would rather just cut my hand off then have to deal with this pain any more. I have lost most of the ROM in my wrist, and if I do push it.. its excruciating. I just am desperate... hence this post. Can this bone not be surgically removed to give me some relief?? Do I have to live in this pain for the rest of my life? My career requires a great deal of typing and it hurts, and its ugly. Now it seems a new bump has formed on my bone bump, this new growth seems like my extra bone has a ganglion cyst? is this even possible? If any one out there can help me.. or direct me to someone who can. If any one knows what is happening here or have experienced this.. I am begging for help. Please get into contact with me. No one around here will help me and I dont know what to do anymore. I have searched and searched the internet and the only thing I ever find is HO related to SPI or Ganglion Cyst information. Thank you for letting me post here.God Bless

  2. #2
    Senior Member lynnifer's Avatar
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    Just out of curiousity, have they seen this 'extra bone growth' on xrays? Have you?
    Make America Sane Again. lol

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  3. #3
    I hope that if you search some of the following terms online, you'll find a more common clinical condition in persons without SCI that might explain your symptoms and X-ray findings:

    Triangular Fibrocartilage Complex ( TFCC ) injuries.
    Triangular Fibrocartilage Complex ( TFCC ) tears
    Triangular Fibrocartilage Complex ( TFCC ) calcification
    Triangular Fibrocartilage Complex ( TFCC ) Calcium Pyrophosphate Dihydrate Crystal Deposition.
    Triangular Fibrocartilage Complex Chondrocalcinosis.

    And if this-- "He was clapping his hands and rubbing them excitedly saying he couldn't wait to cut into that and look at it up close" ever happens again-- run out of that clinic like Forrest Gump!!
    Last edited by 2drwhofans; 04-04-2017 at 07:32 PM.

  4. #4
    Have they ruled out more scary causes such as osteosarcoma?

  5. #5
    I am not sure that you have Heterotopic Ossification, but then again, you could. I would certainly consider going to an academic medical setting and seeing what they say. You should not have to live with this pain, but it could be caused by something else. and since no one will touch you - what have you got to lose?

    I would take all my medical information including the scans, etc with you -

    I am sorry that I can not be of more help.

    ckf

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