Chiari Online Support Group

Newly Diagnosed, Lots to Learn

Hey everybody. So I just got the call about Chiari from my neurologist a couple weeks ago and have been at a loss for information since. I have epilepsy, so I went in for a routine MRI back in December. When my neurologist didn’t call me for a while I assumed no news was good news. Eventually she called and said she found something and would be referring me to a neurosurgeon. Since then, it’s been an endless process of jumping through loops to get more tests ordered before this neurosurgeon will even see me. Until then, I have only the information I can find online, which is really scary. When I asked my neurologist for more info, she told me she couldn’t really tell me more about it. Comforting, right? So I guess I’m just looking at other’s experiences and looking for any helpful tips of advice as I come to grips with this. Right now my biggest problems are the headaches and pain in my neck. Any ideas?