I just got diagnosed with Chiari type1. I’ve never had any major medical problems so I’m scared to death! I’ve had multiple MRI’s in the past 2 yrs and nothing abnormal was ever found. So has anyone else had that happen? I’m worried when I go to the neurosurgeon he will tell me I have some kind of tumor and its not Chiari. My doctor told me people are born with Chiari and I don’t understand how it was never caught on any of my previous MRI’s. Am I being silly??
Lindsay,
It's often missed or discounted by radiologists and dr's. If you haven't already I would get all your MRI reports and films and look at them.Some times they will write "Low lying cerebral tonsils" and not use Chiari. Mine was missed and it took 2 1/2 more years to be diagnosed. Like Emmaline said it can be very overwhelming when you first get the diagnosis. Everyone is different and some people have very serious symptoms and others very little. Just know we are here for you and that you can come here anytime to get support and help.
Definitely check out the Resources page like Emmaline suggested. There is a post "Preparing for your appointment" that is very helpful. Let us know how you make out.
Wendy
Thank you guys so much! I will def check those websites out.
I was just talking this evening to my husband and friend about this very thing!!! I have had sooooooo many doctors and at least 4 other MRI’s. It made me question the dx but researching has made me realize that it must be right. I thank you for your comment and once again making me know I’m not alone.