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?

Welcome @kendallmcneely, although this is a club that no one wants to be a part of, there are a lot of great people with lots to share from their experiences. I’ve learned so much from this site and find comfort knowing that we are not alone in this struggle. I encourage you to read as much as possible and ask questions. My daughter was diagnosed in August 2019 and suffers from many of the same symptoms that are reported by other members here. I will suggest to you to have patience— it is definitely a longer process than any of us would like. Finding the right doctors/surgeons take time and learning to cope with all the “jumping through hoops” to prove or disprove what may be causing symptoms is often frustrating. Patience is your best friend! Praying for you and all the others represented here each day!
With love and prayers, Angel