Hi all! So i'm getting a second opinion on Wednesday morning. My original neurologist said that my cerebellar tonsils are a little low lying, his exact words, that it's not a problem. He even said it wasn't causing my symptoms. Upon googling what that means I found out it's Chiari 1 Malformation and saw I have over half of the symptoms. I wasn't satisfied with his answers, and sought a second opinion. I pick up the copy of my MRI report from my first doctor tomorrow and am anxious to see the new doctor. I don't think mine is very bad, it isn't too far below the line, but I just want the diagnoses, for someone to just call it like it is and give it to me strait. My symptoms aren't too debilitating, and I don't want the surgery (for now). But i'm wondering, what kind of questions do I need to ask my new doctor??
One thing you need if you are not getting the surgery is follow up. You need someone to watch over your chiari and know that if there is a change that they will do something about it. Have you got a complete spinal MRI? This will tell you if you have any other conditions in your spine. If you do have a syrinx they will need to monitor you even closer. I would ask what measurements of your chiari is, if you haven't had a full MRI ask about getting one, ask how often he suggests you get an MRI, tell him/her all of your symptoms and see what they say about them.
I've had the MRI of my head done a few weeks ago. Unfortunately, the only reason i'm able to do all of this now is with the medicaid I got while being pregnant, just had my baby 9 weeks ago and my medicaid will expire by the 27th. After that I won't be able to afford any more MRI's, doctor visits, or treatments. I have no other insurance and pretty much can't afford insurance. My symptoms aren't too bad, really just annoying, and I have a lot of good days, like today. I did write down a list of my symptoms though, that way I have them all right there and don't forget one.