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

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@JustinMcClanahan, will share all that I can or that I know about. Might be similar but different. Think mine is more muscle than bone but at this point I am open to finding out about everything. It started back in 2005 I began using a cane and then later on it ( bending forward ) became more intense and had to go to a walker to keep up with everyone. So that became a crutch also and probably let my muscles get weaker. They (doctors) say my hip flexors are weaker in the back or stronger in the front so therefore I am walking bent over as a result. With my CP it adds more of a problem to the walking. I have never had a problem walking or running as I have played football, basketball and soccer and coached and played with my players. Little awkward to most people but participated. I have tried regular physical therapy and sports therapy but did not have any results. Tried back braces but they did not support my hips and back together so I still was bent over. Found a brace system that might work but it's not available. ( https://www.youtube.com/watch?v=JxhXZb6xJi0&feature=em-comments ) I am also finding that I must be the only one in this whole wide world that has this, lol

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Replies to "@JustinMcClanahan, will share all that I can or that I know about. Might be similar but..."

No you are not alone... I would love to try this brace , Any idea where it is available???

We need it NOW. I'm afraid it will be very expensive. I wonder if it must be removed to use the toilet. You are the first person I've corresponded with that has "it". I went from walker to wheelchair rather quickly. I'm still in shock. My walking days are numbered. Do you ever feel like there is a bulge inside your rib cage about the size of a fist? Have you ever felt like you were in labor in your upper body or feel like there is a fetus inside your rib cage moving around?