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

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@dmorri9421

I might be able to help. I had camptocormia from 2008-2022. Laser therapy and a walker that keep you supported upright. If still interested let me know. Botox doesn't work on large muscles

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Replies to "I might be able to help. I had camptocormia from 2008-2022. Laser therapy and a walker..."

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.