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

Hi, @charlie2020 - I'm not your age, but, in my experience, having camptocormia can make you feel isolated. So I'm glad you're here and wish you all the best. Are you trying PT or any other treatment?
(BTW, my own doctor had never even heard of camptocormia. Apparently, most doctors haven't.)

Thanks for your reply 🙂 I completely agree - I’ve never seen anyone walk/stand how I do here in the UK! I’ve had PT in the past but I really struggled due to the pain (as I was working full time through it for a number of years) and it didn’t help with my posture - I’ve been told for years it was kyphoscoliosis but I could lay (mostly) flat so I was just left floating with painkillers and pain management courses. After my first x Ray (which took 10 years!) the ortho consult diagnosed me with Camptocormia as he’s seen it before. Currently awaiting a referral to neurology to rule out any underlying issues and waiting for a brace to be fitted! So that’s good news. I was shocked that the diagnosis ticks all the boxes for once. I find it a bit odd that I developed this so young, though. I’m hoping it’s nothing serious underlying either.

Unfortunately it was a massive struggle getting here, being told it’s all in my head, I’m feigning for painkillers - pretty horrid. I’m just happy to put a name to it and hopefully get some sort of treatment. I’d love to be able to stand up straight again and be able to live again. I’m not surprised Drs have no clue about this - I’ve seen many and I think I got lucky!

Hi, @charlie2020 -

Good that you'll be seeing a neurologist. How long do you have to wait to see a specialist like that in the UK? Here in the USA it's several months, unfortunately.

I tried PT for quite a while to pretty much no avail, both before I was finally diagnosed and afterward. I have camptocormia and also DISH (diffuse idiopathic skeletal hyperostosis which has caused hyperkyphosis in my upper spine and neck) -- quite the combo. It's frustrating. My core is weak, and they don't know why.

I also was fitted for a TLSO back brace about 1.5 years ago. It did almost no good, alas, so the physiatrist told me it was useless and to stop trying it.

Before that, I'd bought two special canes to try to pull myself upright, but they wound up causing me to need surgery in each hand for carpal tunnel syndrome. Sigh...

Earlier this year, I was prescribed a platform walker (rollator) to use in my home, so at least I get the occasional experience of standing upright-ish for a short burst here and there. The "platform" lingo means that it's high, with armrests. It's not easy to get to the point where you're happy you got such a monster (mine is big and bulky), but that's what camptocormia has brought me to.

I also recently dipped into savings and bought an expensive Danish-made rollator that's not meant for camptocormia but is very lightweight and compact and rather cool-looking (as these things go). It fits easily in the trunk/boot of a car and is good for outdoors and indoors. It doesn't look like something your grandma would use. So far, so good. If you want to check it out, look up "byACRE rollators." There are several kinds.

BTW, I'm a rare bird in that I have truly idiopathic camptocormia, meaning no associated neurological disorder or myopathy or myelopathy.

Good luck, Charlie. I hope you get some answers and help!

Thanks so much for your reply comeback! I can relate to how you feel - I sprain my wrist frequently due to the pressure I have to put on my cane!

Neuro is about 22 weeks as an estimate - I won’t get allocated an appointment until closer to the time. It sucks - but I’m very appreciative it’s free. It sounds about the same amount of time tbh!

I’m sorry to hear about the DISH - I’ve reread this entire thread multiple times as it’s good to see other people’s perspectives with this. Having Camptocormia is difficult enough!

I think the TLSO is what they are planning to try on me - I was told I was on the waiting list for some sort of brace. I’m hoping it will help. What was the issue it didn’t work with you if you don’t mind me asking? Did it straighten you up at all?

Thanks to this thread I did discover rollators - it’s more psychological why I don’t want one, I feel very self conscious when out and about (which is rare) but when I do I get enough people staring just because of my posture and cane. If it helps though, I really need to get over the way I’m feeling towards any aid more than a cane. Have you experienced anything like this btw? I find some people can be quite rude. Thanks so much for providing the link though - those Swedish ones do look a lot more better than the typical ones you usually see online.

I’ve read a lot of papers about this recently since I’ve been diagnosed, I have heard of idiopathic camp. I really feel for you - it can suck not getting any answers. I can fully relate there! I’m just hoping I’m finally getting somewhere, thank you so much for your well wishes. If I do have any updates I will be sure to let you know 🙂

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.

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.

Hi,
Thanks for your reply!
The walking-pole idea would have been me a few years ago. I also used two "3rd foot canes" to pull myself quasi-upright for a while. Unfortunately this strained my wrists and hands, to the point where I had to have surgery on both hands earlier this year.
I'm now using a couple of rollators, one a U-step platform one (inside the house), and the other a byACRE Carbon Ultralight.
Or I just walk quite bent over.
Anyway, please tell me more about the low-frequency vibration plate. I haven't heard of this before.
Thanks!