Camptocormia (bent spine syndrome or BSS): Looking for others

Posted by WiserRanter @wiserranter, Jan 29, 2018

I have been diagnosed with Camptocormia ( bent back syndrome ) recently and having a hard time doing what I used to do caring around a rollator and a cane. Finding information and people besides medical terms has been difficult if not impossible. Only found two people and neither one will talk about it. I have a mild case of CP but that has never really been an issue until now and it gets in the way since being diagnosed with Camptocormia. I also have venous statious in my legs and have to be careful not to even brush them up against anything. Add to that being diabetic also with a weight problem because of inactivity. I am looking for solutions to the Camptocormia as meds have not worked and trying the botox injections again coming up in a few weeks with a new Doctor. Also looking or starting to look for some kind of brace that might hold me up if the botox doesn't work or does not work fully. Found a brace support system but they have not found a producer for the manufacture of them yet so hanging in there for that to happen. Suggestions or comments welcome..........

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@laurie386

I do have a physical therapist who really has no knowledge beyond what I have provided for her through emailing her articles that I was given by my Utah doctor. She does support my exercising and provides me with input about how I exercise based on her knowledge from her usual clients and education. Personal experience for my particular BSS has been working to build up the secondary muscles to provide some support. I was told that the atrophied muscles won't rebuild much. As I said, I work out my entire muscles sets (there are 9) through body pump, cardio sculpt (much like jazzercise or aerobics with the addition of light hand weights and yoga-style classes. I would be interested in finding a doctor who had real knowledge about Camptocormia (BSS) and help me discover if mine is caused by something other than what has been considered.

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I appreciate your continued response, @laurie386. I have read with interest your posts and I'm especially interested in a descriptive phrase you used of feeling like you were "falling forward." Could you explain this a bit more?

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Teresa, the "falling forward" I referred to was my back muscles being unable to hold the torso part of my body up. I found that when I walked, my torso would fold over as those back muscles couldn't do the job. My workouts have been useful in slightly addressing that problem. But it still happens when I walk around my house or am doing chores out in my yard.

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