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

Spine Health | Last Active: Oct 21 9:16am | Replies (127)
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@charlie2020

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!

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Replies to "Thanks for your reply :) I completely agree - I’ve never seen anyone walk/stand how I..."
comeback | @comeback | Sep 30 11:35pm

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!

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