I hear you.
I don't understand why more doctor's don't treat the whole body. It's not all separate parts. It all works together! I also have ACM and was luckily diagnosed after it seemed I suffered a stroke. My doctor had me undergo a brain MRI and thankfully the radilogist knew what ACM was. Luckily, I do not have the associated spinal cord isses. I'm sorry your dd will need surgery. I can emphasize with your frustration and anger with the medical community.
I completely agree!