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Camptocormia (bent spine syndrome or BSS): Looking for others
Spine Health | Last Active: Oct 21 9:16am | Replies (127)Comment receiving replies
Hello, @dmorri9421 !
I am keenly interested in hearing about the therapy that helped you.
I have idiopathic camptocormia, which means that no doctor knows what caused it. A spine specialist I saw last month told me that, in 17 years of practice, he's only seen 4 patients with camptocormia. Two of those had Parkinson's, which I don't have. I also do not have myopathy, according to the neurologist I've seen several times.
I do have diffuse idiopathic skeletal hyperostosis (DISH) in my lumbar and cervical spine. The hyperkyphosis caused by the DISH certainly doesn't help the camptocormia, but several doctors have told me nonetheless that the two conditions are separate from each other. (And they're both idiopathic.)
For years, I tried PT, to pretty much no avail. A year ago, I also tried a TLSO brace, which did almost nothing for me and was quite awkward.
I've been using two "3rd foot" canes when I need to walk somewhere but minimize using them due to strain on my hands/wrists/arms/shoulders. I've been diagnosed with bilateral carpal tunnel syndrome, and a hand surgeon says he should operate. I'm a musician by profession and fear both the risks associated with surgery as well as the possible damage from not addressing the CTS.
I would be very interested to hear about the laser therapy. I may be ready for a walker, too, if it would not further strain my hands, arms, and shoulders.
Thank you for any information. I've been feeling very isolated, with no support.
Replies to "Hello, @dmorri9421 ! I am keenly interested in hearing about the therapy that helped you. I..."
Hi there,
I have this condition and find the only way to get about is with a pair of nordic walking poles: adjust to the correct height ; I also use a low frequency vibration plate and find this has helped over the past year. Leki and Black Diamond make good walking poles.
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Hello!
I'm still hoping someone out there will see the comment immediately above, which I posted on March 3rd (2024). The person who had commented right before me is the only person I've heard of who was "cured" (?) of this condition, but apparently he/she is no longer following this site.
I have idiopathic camptocormia, which means I don't have any of the conditions commonly associated with camptocormia (no PD or other neurological condition, no myopathy, no myelopathy).
It's a rare and isolating condition that has led to further problems for me: bilateral carpal tunnel syndrome due to the use of canes meant to help me push myself upright. I'm a musician, so the CTS has been very difficult for me. I've recently had surgery on one hand, and the other hand will undergo the same later this month.
I long to go out walking as I used to do, but I'm bent over such that seeing ahead of me means that I'm craning my neck way back. And I feel vulnerable.
I now have a very nice U-Step upright/platform walker (that is, it has armrests enabling me to stand almost upright) for use inside, but it's too heavy and large for me to be able to take it outside or transport it.
Can anyone recommend a decent all-terrain upright/platform walker light enough that an older person could fold it and fit it into a smaller car?
Is there anyone else out there with idiopathic camptocormia?
Thanks, and best of health to anyone dealing with this.