I have recently been diagnosed after two long months of specialists, tests, and being told its all in my head with Chiari Malformation 1. I am scheduled for decompression surgery next week, after 1 day of learning of my diagnosis. I do not know my herniation number, but the surgeon stated it is fairly severe and we needed to schedule asap.

After my entire life of living as a clutzy, sickly child, it is wonderful to know all these years, it has not been me, but the CM1 that has caused this. I am looking for any advice for after surgery, what made you most comfortable, is there anything your support caregivers could do to help with the recovery process etc.

I have been experiencing burning sensations (neck & back), headaches, muscle weakness (left side), eye drooping, balance issues, motor skill reduction, just to list a few. Looking forward to communicating with anyone who has or has had CM1 to better understand this debilitating disease.