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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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Please explain........
When I am lying down I am not bent over so I figure if tape is applied to my back when I stand up the tape will stop me bending forward . No idea if it would work and would only be a short term fix but who knows
I do encourage you to give a serious review of the brace that I included pictures of in my earlier reply. The design specifically addresses what we are trying to counter: bending at the waist. The lower band is adjusted to press against your lower body, below the belt line and above the cervix, I would guess it would be about 1/4 the way down the zipper of a man’s trousers. The upper band rides directly on the sternum but below the throat. The strap goes around the back above the belt line, I think that would be L5-7. The results are very similar to having someone stand next to you, facing you, with one of their hands pressing just below your sternum while their other hand presses against your lower back, just as one would do when trying to position you for an upright posture.
I am investigating where I could purchase and get fitted a brace like this in the UK
Hi, my name is Valerie from South Africa. I am 71 years old but look 50, except for the posture. I was diagnosed with Camptocormia about 10 years ago. I have never felt so hopeless in my life but this disease is so debilitating.,But I wont give up! I want my life back!
I think that I have talked to you before, did the bio stuff not work out ?
I have recently been diagnosed with camptocormia. In my research I learned it has been given an updated name - Bent Back Syndrome (BBS). The name change was done to get rid of the stigma of it being a psychiatric disorder. During WWI, it was thought of like shell shock or battle fatigue. That is no longer the case. Besides BBS, I have Parkinsonism, type undecided. Three to 18% of PDers have BBS but I'm not finding it in PD books. Two years ago I had extensive back surgery which failed. A year ago I had all the hardware replaced. Now my back is fine; no more back pain. The reason I mention the back surgery is a hunch that it had something to do with BBS. If I can figure out the "whys" maybe I can figure out what to do about it and reduce the severity of symptoms.
Hi @sadnancy and welcome to Connect. You may have noticed that I moved your post to this existing discussion on camptocormia so that you can connect with other Connect members like @wiserranter and @lotsofpain as they have experience with camptocormia and may be able to share their experience with you. Simply click VIEW & REPLY in your email notification to get to your post.
That is great that you've had no back pain since your last back surgery. What other symptoms are you or were you experiencing?
@ethanmcconkey Thank you for placing me in the correct category. Before the back surgery I had sciatica and numbness in my left leg. I also had butt pain. I was pretty much bedridden. After the first surgery my left foot didn't land where my brain was expecting it to. The surgeon said it wasn't from surgery, the cause is higher up the spine. As months went by pain got worse. I went to Dr. #2 and he did a great job. The other day I met up with someone who also needed a second surgery. His #1 doc was my #2 doc. His #2 doc was my #1 doc. Interesting.My current PD symptoms include apathy, inertia, akinesia, tremors, dry eyes, rigid and/or curling toes/fingers, impaired balance, slow speech, handwriting changes,jerky gait, drooling, clumsy, muscle spasms, difficulty getting in and out of vehicles or getting up from a chair. BBS symptoms:I can stand up with no aids for about 3 minutes. If I lean on something like the kitchen counter or a grocery cart, I can stand longer. After 3 minutes of unassisted standing the muscles above my waist and the diaphragm go into spasms pulling my upper body forward, making it difficult to breathe. I've been complaining about this since January. The surgeon says it isn't from the surgery. PT couldn't help me. Muscle relaxants haven't helped, neither has alcohol (I was desperate one evening!) If I'm at home not using the walker, eventually I become stooped over as if I'm bowing. Tylenol with codeine puts me to sleep. When I'm asleep nothing hurts. Addictive drugs are not a satisfactory treatment. It's a shame that my legs are strong for walking but this syndrome prevents me from doing that.
Read all that I have put on here and see what you think..........