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 | @laurie386 | 3 days ago

What a wonderful group to find! All of us dealing with this camptocormia (also suggested to be named Bent Spine Syndrome when not associated with MS or MD or Parkinson's) and sharing our experiences in trying to be active in our lives. My BSS wasn't clearly diagnosed until 2022, but I noticed the trunk of my body "falling" forward in 2017. According to my physician, my BSS is probably inherited. She did a DNA sample and found some "rogue" genes that were probably the cause, but she wasn't 100% sure. I do have one of the genes needed for MD to be either passed on to my offspring (I do not have those) or to affect me. Two of those genes are needed for that condition to appear. The whole thing is very hard for my self-concept as I used to have great posture...well, I still do when I stand perfectly still. I started working out in group exercise at a local fitness center by lifting weights (Les Mills Body Pump) twice a week. Then I retired in 2021 and chose to ratchet up those workouts and added 3 more workout sessions during each week. I currently work out 55 minutes 5 days a week. A second opinion physician I saw in 2022 told me the working out was great because it will keep me from being confined to a wheelchair when I am 75 (I am 68). I also added in using hiking/trekking poles when I walk distances as I cannot walk for long in a posture that is friendly to getting air into my lungs. I live in Colorado so the hiking poles are a thing.