Dose anyone live close to Ky an have Chiari 1 Malformation .

I am new to all of this an i was told i have C 1 M  yesterday after my brain scan was read an i am looking for help in how to dill with this so please if any one can just help me out an tell me what i need to do my dr. dont know much about an i have been trying to find alot on line from these sites so if you can help please drop me a line ..... thank you  kimhall009.

[Shane99]

Okay, first I don't claim to be a medical expert - just a chiarian that's had the surgery. :) And this can be very scary sounding, but it's important that you have an understanding. With that said, here are the basics;

Chiari is a malformation of the brain. It's not really considered a life-threatening disorder, but it is a life-altering one. In essence, your cerebellur tonsils (the back of your brain :) ) is sliding out past your skull into you spinal column! Not to scare you, but this by itself can cause a plethora of symptoms - severe headaches, memory loss, difficulties storing new memories, vision problems etc. It often leads to Syringomyelia (or syrnix) this is a condition where your spinal fluid doesn't flow right. This can lead to paralysis and in many ways is the more dangerous of the two conditions.

Generally, when your tonsil hernation reaches around 8 mm doctors start considering surgery (this can happen before or after 8mm, but that's a pretty good average). Surgery usually consists of them opening a section of the skull, giving your brain a place to expand without damaging the spine. then they patch it to keep it safe.

You said you had  "C 1 M". I'm not 100% sure what that means - the M is whats throwing me there. Chiari is refered to by a number 0 - 5. Therefore, "C 1 M" could mean a hernation of 1mm or just Chiari 1 (which is the lesser of the Chiari - It's what I have, but mine was 20mm, so they had to operate quickly. So, I for instance am; Chiari 1 20mm).  Each level of Chiari is basically the more noticable or extreme the case is. There's a Chiari 0 which is even rare among Chiari, basically that's Chiari that doesn't show on an MRI, but causes symptoms. You and I have Chiari 1. 2 and on show up as birth defects. The higher numbers being pretty bad.

The first thing you need to do is get a Neurosurgeon who is a Chiari specialist. You live in eastern Ky?  I'm in Tennessee. There are 2 specialist in Tennessee, I don't know about Ky, but there's one in Knoxville.

Dr. Lewis Harris 2100 Clinch Ave Knoxville TN [phone]

Karl Hampf, MD 2410 Patterson St Ste 500, Nashville, TN 37203 615-327-9543

Dr Hampf is my doctor and I like him, but you are a little closer to Knoxville.

This is a good site to gte info on. Just read the threads and they'll answer a lot of questions. And let is know what's going on. We're a big happy family around here :).

Good luck.