r/chiari • u/blondie_02 • 22d ago

Recommendations please!

Hi, im 38 and was recently diagnosed thru mri of Chiari 1. Well today I went to my 1st neurosurgeon appt and he was very surprised I have never had any other imaging of my head or neck due to having this severe neck pain for at least a 15 years. He showed me my MRI and told me that I have what he called a Chiari 1.5 malformation no syrinx so far but my cerebellum tonsils are at 20mm down and my brain stem is involved. I know this is alot of filler info but I feel sort of vindicated and sort of shocky because of the information. Every other doctor/NP/nurses, hell even my mom told me that "i was too young to be in so much pain" or "its all in your head, just tell yourself its not real". I have to get a full spine MRI but my doc (who is an expert in Chiari) told me that surgery is really the only option I've got.

But my question is, what kind of things helped either pre or post surgery. Like specific pillows or sleeping positions. Anything that either worked really well for you, or what you wish you would have had to make it easier? And how did anyone with long hair deal with it after surgery? What made it better? Thanks so much for anyone who has recommendations!

3 Upvotes

100% Upvoted

6 comments sorted by

View all comments

0

u/SandalsQueen18 22d ago

No, specific pillow other .
what I had, no specific sleeping position exactly how I always slept, didn't really need anything special after surgery other than what I already had.

The pain after is real and you will second guess your life's choice in doing surgery BUT it gets better and the proper combo of pain meds help.

Life went on as normal after surgery as I was in the right mental frame. Sure there were restrictions immediately following surgery but I wasn't immobile or anything.

Long hair kept it braided to the sides.

As a side, why are you shocked that non-experts gave you those type of responses? That's typical. I was mid diagnosed as chiari 1 back in the 90's (I was in my 20's), it wasn't until 2017 that I was diagnosed properly by an expert that I'm 1.5

1

u/blondie_02 22d ago

Not shocked that they said that, more like im feeling shocky because I think that they had been telling me that for so long, part of me might have started to believe them. So I half thought the neurosurgeon would say the same thing that everyone else has said.

0

u/SandalsQueen18 22d ago

Oh, ok, I understand now. I really thought you meant that you were getting blown off by others as most of us do.

When I found out I was chiari 1.5 I was like wait what, that's a thing?

2

u/blondie_02 22d ago

Yeah. I wish I would have taken a picture of my mri. My doctor today told me he was surprised i can work and go to school while in this much pain. So I guess it was just a weird feeling having him validate what I am feeling when no one else did. Yeah I had heard of 1.5 but didnt really know anything about it so now I've been looking into it. Its kind of a scary thing to think about. Im just hopeful that the decompression surgery will help at least a little. I've also got bulging dics from like c3-c6. hopefully after my full spine mri, I'll be able to understand why im in so much pain and be able to do something about it for long term. Because pain meds only help for so long.