Chiari malformations
 

I woke one morning and the back of my neck was very sore. 2 days later,my shoulder got sore,then down my forearm,then my index and middle finger got numb.had an ( mri ). the page that came with my mri disc said, low- lying cerebellar tonsils 11 mm.I looked it up and the site said this was Chiari malformations. I couldn't find too much that didn't require surgery on the BRAIN!!!...Is there anyone who has this,knows anyone who has it, or heard about it. is it life threatening? it's very painful.
I have an appointment with a neurosurgeon 2-24.
I'm anxious to know what I'm up against. I know one thing,time and rest doesn't do much. It's getting worse. I have tried to get a sooner appointment, but their booked. Their booked.
I would so much appreciate anyone's input. This seems to be rare. My primary care doctor never had a patient with this.I have all but 2 symptoms out of quite a few.
Thank you so much.
Kimy

we have a forum for chiari here at neuro talk.....go down the alphabetic listings to Arnold chiari malformation.....not too busy, but worth a try....you can try the gluten sensitivity forum, one of the more knowledgeable chiari folk posts there as well, and you might get her attention.....post to Lizard....good luck

Well hi, My name is Jessica, and i was diagnosed when i was 15 years old. i was in the library at school and lost all peripheral vision. so after that it was mri after mri. my doctor had never seen it either and told my poor mother that he thought that i had a brain tumor. but it turned out to be chiari. i have the pain and soreness quite often, and quite frequently have the migranes, but would much rather have pain and migraines than brain surgery. i am currently writing a research paper, and i would love to ask you a few questions if you wouldnt mind. if not its ok, and i would still like to talk to u about the disorder, as i am going to be a nurse practioner and am quite interested.

been diagnosed with this since 1999
 

Hi all I have been diagnosed with acm type 1 since 1999 i have been decompressed in 1999 and in 2002 I have done much research into chiari and I have a double syrinx in my spinal canal for the added fun after my first surgery was fine for 3 years then symptoms started a slow come back and by oct 2002 i was in JHU hospital having the 2nd decompression done and now my symptoms are barely stable what helps is i have a lot of great support with and around me and i do not ley others dictate how i feel and what i do if they where in my body then hey it would be a different story also i have a good dr who amazingly knew what chiari is and gives me referals to the right people my one problem is i cannot get an mri done because i shunt on lower spine and because i do not know the type no one in Pa will give me one and anne arrundel hospital in Maryland won't fax my dr the paper stating the type of shunt so i have to do the legwork so to speak.so just hanging in there as best i cam for now will post again soon if anyone needs to talk about things or needfs help contact me be glad to help if i can:):Wave-Hello: ok i am :OuttaHere: for now