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Thread: HO getting worse, can't sit up anymore!

  1. #1

    Angry HO getting worse, can't sit up anymore!

    I have had Heterotopic Ossification in my left hip since my T7-T10 injury three years ago. In that time my range has gotten slowly but steadily more limited. Now I'm at the point where I can't really sit up anymore. When I'm in my chair, I have to lean way back with my butt on the front edge of the seat, which is very uncomfortable. So I spend much of the day either in bed or on the couch, occasionally I'm in a recliner.

    I suspect that surgery is the only option at this point, but I'm not excited about it. Since the growth seems to be still going I suspect it's not even an option. (I haven't had any recent tests on the HO so I don't know for sure that it is growing.)

    Do I have any options at this point?

  2. #2
    Moderator jody's Avatar
    Join Date
    Jan 2004
    east o the southern warren
    I did a little reading on this. they can help it with surgery, but sometimes use radiation to prevent more ossification. I hope you are able to get help with this. there is a lot of info if you google treatment of heterotopic ossification. bone scan is the best for seeing its progress. and hip replacement seems to be common treatment.

  3. #3
    Ya gotta get out there and move. Of course it's going to hurt, you haven't been moving it. Docs have been saying that about my shoulders for years. It hurts sure, but if I don't keep 'em moving, they are going to freeze up. Are you stretching the legs or anything.

    Surgery should be your last option. Once you are cut, there's no going back. Talk to your doc, get some Ultra sound or SCENAR on it to break up some of the adhesions and to free it up a bit. Then get to work on stretching, getting stronger and getting out there and enjoying life.

    There's a guy here in my home town that had a pressure sore for years that wouldn't close. His hip started doing the same thing as yours. He had his leg taken off rather than being plagued with the life situation it was putting him in. I thought it was a rather drastic approach, but he hasn't had any problems since and is enjoying a full life for the first time since his injury.

    Jody has some great ideas. But once you start down that road of surgeries and all the bs that goes with it, there's no turning back. Do all you can first to turn this around.

    Good luck Lazlo, we're here to support you with whatever you choose to go with.

  4. #4
    Lazlo, I'm really sorry to hear this.

    Would you please share your story about getting HO -- how it started, how you first noticed something was wrong, what kind of pain you had and where (e.g. sharp or dull, intermittent or constant, stabbing/burning/electric etc.), whether there were any visual changes or changes you could feel if you ran your hands over the area, how it's progressed, and so on.

    There are a lot of posts here from people who have HO, but almost none that tell the story of how they discovered it, details about the kind of pain it causes. Info like that -- that goes beyond the clkinical descriptions and info available on HO -- would be invaluable in helping others keep an eye out for it.

    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar

  5. #5
    Sure THC: The HO started immediately after my SCI. One of my physical therapists noticed it when I was having trouble with some range of motion exercises. This was just a few weeks after my injury.

    At the time I was given Didronel, but it didn't seem to do anything to stop the progression. Then, a couple months after my injury, I broke my left femur and had a rod installed to repair it. This really kicked the HO into high gear. I was given radiation treatment to try to stop it but it didn't help. That's when I started having trouble sitting up properly. Now it's three years later and though the growth slowed it never stopped.

    The left hip is visibly larger then the right. It looks and feels like a softball in there, just below my hip bone. There's absolutely no pain, but then I snapped my femur in two with no pain so I guess that's not saying much! I bet it would hurt quite a bit if I could feel it.

    I guess for the time being I'm mostly looking for suggestions on how to sit comfortably, transfer easier, etc. That, and to hear about any options I might have overlooked.

    Quote Originally Posted by Patrick Madsen View Post
    Talk to your doc, get some Ultra sound or SCENAR on it to break up some of the adhesions and to free it up a bit.
    That's the first I've ever heard of this, thanks.

  6. #6
    Moderator jody's Avatar
    Join Date
    Jan 2004
    east o the southern warren
    hope you are feeling better soon lazlo, have you seen the doc, and gone over options? I know nothing about this kind of thing other than what I have read on line. It is not uncommon in sci patients apparently.

  7. #7
    Senior Member
    Join Date
    Mar 2006
    Sorry to hear it has gotten so bad. Mine did respond to the Didronel, and stopped at that point. I know they can't operate until it stops growing. If you are considering that route, what is their plan to get it to stop? Just keep waiting?
    T7-8 since Feb 2005

  8. #8
    Senior Member Big Tuna's Avatar
    Join Date
    Feb 2009
    Souderton, PA
    I had mild HO at my hips. They gave me Didronel & took Xrays to monitor it. It cleared up eventually. Have you gotten it xray-ed at all??

    That sucks that you have that much pain & discomfort!! Hope the docs fix it fast!
    Inc C4 since Oct 07

    "Fate rarely calls upon us at a moment of our choosing" - Optimus Prime

  9. #9
    I've had several xrays and a bone scan but these were a couple years ago. The bone scan showed a lot of active growth at that time. I only know it has gotten worse because my range is decreasing.

  10. #10
    Before opting for surgery, another bone scan is needed to be sure it has matured and is no longer growing. Surgical options would include excision (which can be bloody and risky) or a girdlestone procedure. I too have had a couple of patients opt for hip disarticulation (amputation at the pelvis) but the skin problems and problems with seating and balance this causes should make this an absolute last resort.

    If you do have surgery, it is critical that it be done by an orthopedic surgeon who is very familiar with HO in those with SCI, not just in general orthopedic or TBI patients.

    I am curious....did you have a prolonged ICU stay or period of bedrest when you were first injured (more than 1-2 weeks)? Did you also have a TBI at the time of your accident? Have you had pressure ulcers? All are associated with higher rates and worse cases of HO in those with SCI.


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