Hello all (especially SCI nurses!),
I’m facing a tough problem and hopeful that someone might have an idea that offers me a way out.
I have massive heterotopic ossification in my right hip, it has been growing there nonstop since November 2019. In July 2021. I thought it had reached a point where it could not get any worse, and on the advice of my orthopedic surgeon I chose to have the ossification removed surgically. In contrast to advice I received here she felt certain that surgery would not cause it to “return with a vengeance,“ despite the fact that it was still growing at the time. I wanted to believe that was the truth, and I have suffered the consequences of being wrong.
The ossification is now substantially worse, and has reached a point where I don’t think I can continue. It has been steadily getting worse over the three-year period, but the last two weeks have developed into an untenable situation and the last couple of days have felt like I’m slipping away fast. The constant pain is indescribable. The torque on my body from the hip has now made transferring all but impossible, and it feels exceptionally dangerous. I can’t get anything like lift from my right buttock / sit bone… the torques drives it and my right thigh hard into any sitting surface, and even though every transfer is aggressively downhill (thank gosh for my adjustable height bed) I can barely make it. There is no doubt in my mind that I will absolutely end up on the floor at some point soon, likely naked after showering since the transfer from shower chair to bed is by far the worst.
Meanwhile, the ossification has also grown into my GI tract and the pressure has produced a chronic bowel obstruction. As this situation worsened over the past three years I took steps to mitigate it, including getting a colostomy in 2020 when I stopped being able to execute successful bowel programs while sitting in my shower chair. That worked well until February 2022, at which point further growth in the ossification worsened the condition and I have not produced solid stool since. I am currently using a highly restrictive diet (actually just liquid as of yesterday… yum, bone broth!), and nevertheless am chronically constipated. I use magnesium citrate every evening (occasionally a stronger bowel prep agent like Suprep) to force overnight bowel activity in the form of explosive diarrhea that also has the happy side effect of releasing what I call “gravel,” small chunks of obstruction that all food and liquids seem to get stuck behind every day. Very little of my water intake ends up in my bladder, as most gets jammed up behind the obstruction in my bowel. Mag Citrate seems the only way to induce any movement, but inevitably contributes to the backed up diarrhea at the same time. A Catch 22.
So now I am nearly unable to transfer, and walking a razor’s edge trying to outpace this bowel obstruction each day. I produce ~3 liters of diarrhea every night, and am always distended. I fear that the slightest further growth in the ossification will be an end game for me. I desperately need help, but my doctors have had no ideas beyond simply waiting it out until the ossification stops growing. It has been three years, and still shows no signs of slowing. I fear that waiting is not actually in the cards.
I have come to the conclusion that my only option is to once again get surgery to remove the ossification, But I realize full well that this is a terrible choice in that it will almost certainly lead to further ossification, possibly, somehow even worse than this. Is there anything else, anything at all, that I can do? Frankly, the surgeon from my July 2021 surgery Refuses to do another one because it was so complex, so challenging, and so ineffective. I haven’t been able to find another orthopedic surgeon willing to do a surgery for this second time, which is a further complication.
Please let me know if there are any ideas that I haven’t yet considered. I am desperate and at the end of my rope.
Thank you all so much,
Emmett
3 images: 1) Most recent x-ray (11/3/22), 2) x-ray before surgery (7/12/21), 3) what was resected in July 2021.
I’m facing a tough problem and hopeful that someone might have an idea that offers me a way out.
I have massive heterotopic ossification in my right hip, it has been growing there nonstop since November 2019. In July 2021. I thought it had reached a point where it could not get any worse, and on the advice of my orthopedic surgeon I chose to have the ossification removed surgically. In contrast to advice I received here she felt certain that surgery would not cause it to “return with a vengeance,“ despite the fact that it was still growing at the time. I wanted to believe that was the truth, and I have suffered the consequences of being wrong.
The ossification is now substantially worse, and has reached a point where I don’t think I can continue. It has been steadily getting worse over the three-year period, but the last two weeks have developed into an untenable situation and the last couple of days have felt like I’m slipping away fast. The constant pain is indescribable. The torque on my body from the hip has now made transferring all but impossible, and it feels exceptionally dangerous. I can’t get anything like lift from my right buttock / sit bone… the torques drives it and my right thigh hard into any sitting surface, and even though every transfer is aggressively downhill (thank gosh for my adjustable height bed) I can barely make it. There is no doubt in my mind that I will absolutely end up on the floor at some point soon, likely naked after showering since the transfer from shower chair to bed is by far the worst.
Meanwhile, the ossification has also grown into my GI tract and the pressure has produced a chronic bowel obstruction. As this situation worsened over the past three years I took steps to mitigate it, including getting a colostomy in 2020 when I stopped being able to execute successful bowel programs while sitting in my shower chair. That worked well until February 2022, at which point further growth in the ossification worsened the condition and I have not produced solid stool since. I am currently using a highly restrictive diet (actually just liquid as of yesterday… yum, bone broth!), and nevertheless am chronically constipated. I use magnesium citrate every evening (occasionally a stronger bowel prep agent like Suprep) to force overnight bowel activity in the form of explosive diarrhea that also has the happy side effect of releasing what I call “gravel,” small chunks of obstruction that all food and liquids seem to get stuck behind every day. Very little of my water intake ends up in my bladder, as most gets jammed up behind the obstruction in my bowel. Mag Citrate seems the only way to induce any movement, but inevitably contributes to the backed up diarrhea at the same time. A Catch 22.
So now I am nearly unable to transfer, and walking a razor’s edge trying to outpace this bowel obstruction each day. I produce ~3 liters of diarrhea every night, and am always distended. I fear that the slightest further growth in the ossification will be an end game for me. I desperately need help, but my doctors have had no ideas beyond simply waiting it out until the ossification stops growing. It has been three years, and still shows no signs of slowing. I fear that waiting is not actually in the cards.
I have come to the conclusion that my only option is to once again get surgery to remove the ossification, But I realize full well that this is a terrible choice in that it will almost certainly lead to further ossification, possibly, somehow even worse than this. Is there anything else, anything at all, that I can do? Frankly, the surgeon from my July 2021 surgery Refuses to do another one because it was so complex, so challenging, and so ineffective. I haven’t been able to find another orthopedic surgeon willing to do a surgery for this second time, which is a further complication.
Please let me know if there are any ideas that I haven’t yet considered. I am desperate and at the end of my rope.
Thank you all so much,
Emmett
3 images: 1) Most recent x-ray (11/3/22), 2) x-ray before surgery (7/12/21), 3) what was resected in July 2021.
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