Have you tried to contact Dr. David Frim in Chicago, IL? I have heard of him, and that he is a Chiari specialist.
HTH!
Dr. Jon Weingart in Maryland. He's out of Johns Hopkins, our country and worlds best hospitals. He did my sisters Chiari decompression in May and now I am a patient with him, just being diagnosed last week. He is "the best neurosurgeon for Chiari malformation in the country". Do the research on him, you'll be glad you did. You'll find that his experience and success is 10x greater then that of his collegues. And his bedside manners are absolutely genuine, very polite and good hearted. I know it would be some travel for you, but well, well worth it.