I think that those of us with Chiari have going so many years with our symptoms that our body has adapted and we've learned to work around them.

Boy, it seems like a lot of us have gone through hell just to get a diagnosis.

I still don't have a diagnosis (besides Fibromyalgia), but I've been experiencing all these strange Chiari symptoms for years. The neurologist refuses to send me for a brain MRI. He insists that my headaches are migraines (although the pain is in the back of my head not the side) and that the neck spasms are spasmodic torticollis. I asked him about Chiari malformation. He said that he's only seen two cases of Chiari in his 30 years of practice, so it couldn't be that. I guess that he has X-ray vision!

I am very frustrated and scared but I won't back down until I found a doctor who will help me. No one should have to live with such pain.