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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 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 🙂

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comeback | @comeback | Oct 1 2:29pm

Hi,

Definitely let us know if/when you have an update!
There aren't many people on this thread. I never got any response to my posts once I discovered this forum half a year ago, so it can feel lonely having this rare condition.

The back brace made me stand maybe an inch more upright, which was semi-pointless. Also, I lost weight, so it no longer fit anyway. But I really hope it will help you! We're all different.

I confess that I'm still shy about going out walking in my neighborhood with my "cool" red byACRE, but I'm trying to get over myself. So I can relate to what you're saying. (And btw, I'm older. Nothing like an old fool?) I think a big part of my problem is being afraid that I'll look vulnerable and weak. Phooey on that. But it's a bummer dealing with recognizing you have an obvious disability, probably especially if you remember a time when you looked more "normal".

Walking is really important to our health and feeling of independence, etc. So I hope you'll be able to get out and do that.

Having your face facing the floor/ground can limit your social interactions. That's no good! So use whatever you need to to pull yourself a bit more erect, so you won't become a hermit.

Do take care of your wrists.

Wishing you all the best!

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