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Camptocormia (bent spine syndrome or BSS): Looking for others
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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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?
I tried two braces and neither would work. Bracing the hips and upper torso is hard and haven't been able to find anything else that works. People come and post and don't come back so you are the first person to make comments. I am getting worse but fighting it off as long as I can. Check your inbox I am sending you indo
Thank you for sharing your experience with "it". I feel that if I had a brace to hold me erect, I could walk easily. My legs work fine. I'm going to check Hanger and see what they can do for me. I'm a 72yo female living in Lexington, SC.
Been there done that but see what they can do for you
@caprice123. I am newly diagnosed but I've had "it" over a year. I thought it was caused from back surgery. I kept doing PT with no improvement. Now that I realize I can't improve with exercise I've pretty much given up hope. I haven't heard anyone talk about the flutter movements inside the rib cage. I think I may have a second dx: diaphragmatic myoclonus. I have an appointment to see neurologist next week. I hope he can sift through all the symptoms and tell me what I have and if a brace would help.When I stand up the muscles between my bra and my waist tighten pulling my upper back forward. That squashes my chest and I can't get my breath. One night I was in bed, awake. There were movements in my rib area as if there was a fetus moving around inside the rib cage. And there were wave-like movements. I wanted to call 911 for help but didn't think they would come because my symptoms sounded so bizarre. Then I began to doubt myself. Was this really happening or am I crazy and imagining it? More research described my symptoms as d. myoclonus. Of course it's possible to have 2 diagnoses.
I posted these pix August 2018 after I was diagnosed with Camptocormia. The VA supplied me with a great walker and handicapped parking permit and Medicare covered the back supplied by Hangar Clinic. Google Hangar for one nearby and visit them along with these pictures. This brace will easily and fully support you in an upright posture. Not easy to sit down for any length of time.. when the strap is passed around the back and attached you then close the latch. If you need to sit for a rest while on a walk, you would unlatch the lever which allows you to ease down to a sitting, in a slightly leaning back position. Once rested push up to standing position and relatch.
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2 Reactions@rjmcb. I've got questions. What testing did you do to get that diagnosis? Is the cause of yours dopamine depletion of PD?How long did you have it before being diagnosed? How many docs did you see before you got the diagnosis? Is it getting worse or staying the same? That's a dumb question. If you already have the diagnosis, it already is WORSE. Do you also have diaphragmatic or respiratory myoclonus? I'm going to check into the brace. I feel that if I could just get the support I need, I could be ambulatory again. I'm very grateful for your help. Nancy from SC.
This “lower back fatigue”, as I referred to it was the best description I could come up with, came on rather suddenly while out on a daily walk of about 3 miles. We were a group of employees who walked during lunch. Nearing the end of the walk I suddenly felt the need to sit on a big rock to “recover”. I was 62 at the time. This was the beginning of a 15 year journey that wound through numerous medical specialists and tests: epidurals, facet blocks, neurostimulator implant(4 years, then removed), laminectomy, chiropractors, acupuncturist, neurosurgeon, neurologists, Mayo Clinic-Jacksonville, FL, X-ray, MRI, CScans, numerous blood tests. The one common opinion shared by just about all was: “You have signs of arthritis in your back but not more than someone your age should have”. I was at the point where I felt like I had tried every avenue and just accepted it. My 4 year older sister had been walking bent over for at least 4 years before me. She never seriously investigated the symptoms and refused to go in public with a walker, choosing to move from handhold to handhold. Now when she is in the kitchen the breakfast bar prevents seeking her. Point is: don’t let pride interfere in your lifestyle. I was finally referred to a neurologist in Savannah, GA Dr. Victor Rosenfeld (912)691-4100, 1326 Eisenhower Drive, Savannah, Georgia 31406, and on August 3, 2017 I had an appointment, meeting first with the nurse who performed a few neurological tests and asked for my symptoms. I have found the best analogy is to say that it is like carrying a food tray with arms fully extended and a light weight and walking. After a number of yards you feel fatigue (not real pain) in your lower back causing you to feel the need to sit down and rest before continuing. After her exam, Dr. Rosenfeld came in and also asked for my symptoms. Again I described it as before. He said that I had Camptocormia. This took all of 1 1/2 minutes, and 15 previous years of failures. He printed out a computer search for Camptocormia and it fully describes my conditions. He said that I would find that 99% of doctors, nurses and clinics would have never heard of it. So true. I have been checked for Parkinson’s and I don’t have that, thank God, nor does my sister. There are some indications that it can be inherited in some (I think my father showed some symptoms, much less than my sister and me). Please explore the back brace with Hangar. I have a great walker called The Drive, available through Walmart and Amazon and they make a model that has raised handles that are designed for walking with your forearms resting in arm brackets. Look it up on Google. Keep on looking, there’s too much life left, and things for us to do.
Bob
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2 ReactionsThank you for sharing your story. I'll be seeing my movement disorder doc on Tuesday. I don't have back issues. The muscle spasms occur in the front. I wonder if there are subgroups of Camptocormia? Or maybe it's like PD - every pt experiences it differently.