Struggling

General
1

Hi all! I’ve only just joined here and have been lurking for a few days.

I was diagnosed with chiari 1 a month ago, and I am really struggling. I haven’t had much in the way of intense pain until yesterday I woke with a sore back. I’ve had the daily head and neck aches but the intensity is increasing. I’ve already seen a neurologist (who says its all migraine) and a neurosurgeon ( who says my chiari is small and insignificant). I’m struggling to find a specialist who will listen.

To me, my MRI shows how squishy it is in there and I’m hoping there is no csf blockage. There no syrinx, though I have only had my neck and head scanned.

I guess I’m just sick of it all already. I’m sick of the pain bringing tears, I’m sick of no one helping around the house and I’m sick of so called specialists not helping me.

I really don’t know what more I can do.

2

Thanks Abby. I think I’ve just been having a bad few days, and no one seems to understand because you look ok.

I’m not sure on the size of the herniation so can’t comment on that, though in my report it says its a ‘modest’ size and is at the same level as C1. I don’t even know if this is a good thing or not. The neurologist just seems to want me on medications and to try Physio to rule out cervicogenic headaches.

sigh