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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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Hello I has camptocormia from April 2008 -July 2022.
I had seen over 16 doctor specializing in Orthopedics,
Neurology, spine specialist, movement disorders specialist, chiropractors and physical therapists.
Not one did anything to improve my posture. Finally, I tried a new Physical therapist,after 6 weeks I was able to walk over 50 yards without a walker. After9 weeks I was going over 200 yards. Long story short I now walk the golf course every weekday playing 18 holes. A big part of my treatment was a new walker that held me up straight and Lasertherapy.
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
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.