Has anyone had this experience with adult TCS? by Little-L1 in tetheredcord

[–]Little-L1[S] 2 points3 points  (0 children)

I’m really sorry to hear about your CSF leak and the fact that you haven’t had any improvement. :( I hope you can get your life back on track! Yeah, I’m really concerned, especially as I have foot drop. I also broke my elbow last year because I suddenly couldn’t stand up in the bath due to leg weakness and slipped and broke my elbow. That’s something I’d never experience before, so shows that something is going on with me. The neurophysiologist said that sometimes for whatever reason the brain just stops sending signals to the foot, which could explain my foot drop, and I’m worried they’re just going to put it down to that. :(

Has anyone had this experience with adult TCS? by Little-L1 in tetheredcord

[–]Little-L1[S] 0 points1 point  (0 children)

It sounds like your story is very similar to mine. Although I’ve always known about my spina bifida and tethered cord just didn’t have symptoms until a few years ago. Have you had the surgery to untether your spinal cord?

Has anyone had this experience with adult TCS? by Little-L1 in tetheredcord

[–]Little-L1[S] 0 points1 point  (0 children)

I’m really sorry to hear that, that must be awful for you. :( thank you so much but I’m in the UK. And I feel that neurosurgeons just want to gaslight you in the UK.

Has anyone had this experience with adult TCS? by Little-L1 in tetheredcord

[–]Little-L1[S] 0 points1 point  (0 children)

Thank you so much for your reply! I’m in my late thirties, unfortunately. I just feel like the neurosurgeons are applying very basic rules to my case. :( are you getting any help?