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

@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

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 am currently 79 years old, white, male and about 5' 10", 170 lbs. I was a daily, rapid walker (2-3 miles in 50-55 minutes) when suddenly toward the end of the walk I needed to sit down as my back suddenly felt tired/worn out, but no pain. I was 63 at the time. Since then I've tried: Chiropractor, physical therapy, facet blocks, epidurals, lamanectomy, neurostimulator implant, acupuncture, heat, cold, rubs, think I covered about all. I have met with neurologist, neurosurgeon, internist, chiropractor, physical therapist, psychologist. I visited Mayo Clinic, Jackson, FL. I have had X-rays, MRIs, Cat scans, blood work, urinalysis. The one common "conclusion" shared by all, including Mayo, was that I had apparent arthritis, BUT NOTHING UNUSUAL FOR MY AGE. It wasn't until December of 2017, that I visited a neurologist (the third one) in Savannah, GA, and he asked for my symptoms, which I described as lower back fatigue (like carrying a lightly loaded food tray with outstretched arms). He diagnosed me within 1 1/2 minutes and said: "You have Camptocormia. I haven't read anything about it for 15 years, but that's what you have". He printed out a Google information sheet for me and I felt like I was reading a diary entry. Upon re-reviewing my MRI it is easy to see the atrophy of the small muscles at the bases of individual vertabrae. I have never been diagnosed with Parkinson's, which almost all who suffer from also have Camptocormia. I have gotten a very good walker, and with my back brace, can walk 2 miles. Without the brace, about a mile. With neither I can only walk about 100 yards and then need to sit. When I lie down or sit, everything is as normal as it had been my entire life. The brace was supplied by Hanger Clinic Prosthetics, in Bluffton, SC, but I believe they are a national firm. Sorry for the length but I do hope it helps.

I was diagnosed with camotocormina three years ago. If I try to walk without sticks, the rollator or use my mobility scooter, I have terriblellwer back pain. The more I bend over the more mobile I am, even though at a very slow pace and not being able to see where I am going. If I try to look up then I get severe neck pain. The only relief I have from this condition is for a very brief spell when I first get up in the morning or when I am sitting down. though the more I walk the more I suffer from pain and discomfort. I had two MRIs which showed my para spinal muscles have wasted away. Nobody knows why this has happened. I tried physio, but the physiotherapist discharged me as there was nothing they could do for me. Exercise or movement makes the condition worse. Camptocormia has disabled me as I need wheels to get me around. Even the rollator now is of little help. I’ve been told by the neurologist that there is no cure. I have no choice but to live with this disabilitating condition. I do sympathise with you.

@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