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

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.

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.

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 have this condition and have found the only way I can get about is with a pair of trekking poles, this really impacts on the arm muscles most notably the triceps; I also use a low - frequency vibration plate and other isometric and stretching exercises. There has been an improvement this year, so I am keeping up with more of the same. I had never heard of
Camptocormia until about 2 years ago, but was determined to try anything. Now aged 79 and the same weight and height approximately 5' 9'' and 168 lbs

Hi, I’ve just been diagnosed after developing what I now know to be Camptocormia at about 24 years old. I’m now 30, does anyone else my age have this problem? Regardless of age, it is a comfort to know I’m not suffering alone (as much as I don’t want anyone else to suffer!)