Hello I am new to this

[Guest guest]

Just wanted to introduce myself. My name is Sue. I am 36 years old. A

social worker in NJ, but live in Eastern PA. I've had what I thought

was one VERY long (12 years now) migraine. I've had neck pain on and

off since I was about 18 but had a car accident around that time and

contributed it all to that. I've also been on topomax, pretty high

doses, so deal with the side effects of that.

It all started to come together just recently when someone I know in

another group mentioned someone SHE knows with Chiari. I'd never heard

of it. When I looked, the list of symptoms is ME! I was floored. I

even went off of my topomax to see if they symptoms stayed. I had

suspected they would since I'd been tapering the dose already with no

effect.

Last year, I started with serious back issues out of the blue and had

an L4-5 discectomy. More recently, I've had an entirely different,

searing neck/shoulder pain unlike anything I've experienced before.

I've also been so dizzy I've driven my car off the road twice I

went back to my neuro surgeon who did an MRI. He said I had some bad

discs, but nothing surgical and suggested Pain Management. I had to

pick up my own MRI results for pain management and there - clear as

day it says " cerebellar tonsillar ectopia " !! and mentions a possible

syrinx.

I had a pulmonary function test just today because I've been so short

of breath. That was just fine. But yet I'm still short of breath and

my chest hurts.

I'm sure you've all heard it before. Neuro surgeon saw nothing.

Regular MD said take it up with surgeon. Pain management sees neck

pain and wants to do an epidural. My cardiologist (i was persuing a

PFO for the migraine) says Chiari and deal with that. Pulmonologist

says neurological basis for breathing issues.

AAAAAARGH!!!!!!!!!!!!!!!!!!!!! I shouldn't have to figure this out

myself! I don't have an MD!