I need some advice!
 

Hi I am a 25 year old and I was recently diagnosed "borderline" Chiari 1 Malformation with a 4mm herniation. I started to have bad headaches when I was in junior high about 13 or so. They blamed it on allergies and they eventually went away. Then about 5 years ago I started having them again after I had my son, and this past year they got significantly worse! These last 3 months I have been experiencing dizziness, nausea, blurred vision, ringing in my ears, R knee buckling, tingling in my toes and hands and face (mainly R side), headaches beyond tolerance (like my head is going to pop off, and difficulty trying to say what I want to. The hadaches start in the base of my scull and radiate to the top of my head into my eyes and down my neck and they are usually mainly on my right side too. I went to see a Dr. Spetzler (he has no bedside manner at all!) and I first spoke with his "resident for most of the visit and explained everything to him and he went and talked to the Dr. They came back and as soon as he walked in he said I wont do the surgery and the symtoms you are having you will just have to live with it and try some medicines with your neurologist (mind you I have tried pretty much everything out there and have had nothing work, or it did and it stopped working.) I'm so upset and frustrated! Because my herniation is't "that bad" the symtoms I'm having "must be caused from something else." It sounds to me like I'm a classic case except that my actual herniation doesn't meet the standards. If it was 5mm, he might have actually taken the time to listen to me. I don't know what to do next and I need help! Should I get another opinion? Should I just try to get on with my life and be a guinea pig and try more meds? He told me to come back in a year for another MRI and see if it progressed, but then he also told me it doesn't progress! Is anyone else in this boat? HELP!!!!!!!!!!

Sounds to me like you might just need to look for a new Doctor. I don't believe the herniation in mm has any direct or absolute bearing on what symptoms you have, or how bad they are. I am a perfect example. I am at 15mm, but I really am only having headaches. I have had vision weirdness in the past, a little bit of swallowing trouble, some fatigue, but definitely no loss of feeling anywhere, tingling, or any balance issues.

Seek out another neurosurgeon. What part of the country do you live in?

I live in arizona. Yeah its funny cuz I have all the classic symtoms but he just shrugged me off and said that he doesn't want to turn me into a "surgery cripple" and that i would still have the same symtoms on top of haveing surgery symtoms. He was a total jerk, he's supposed to be world reknown for his work, but he doesn't have very good bedside manner!

from everything I have read and heard from my friend who is a neurosurgeon is that the mm has absolutely NOTHING to do with your symptoms. You can have as little as 1mm and have major symptoms or you can have a 15mm with no symptoms. I would get another doctor. My friend also said they would do surgery based on your symptoms--I was worried if I was less then 5 they wouldnt do it (ended up being 10) but he said if my quality of life was affected they would do it