My 22 year old daughter, who lives at home and is partially disabled due to EDS/POTS, may be facing surgery for Chiari Malformation. Based on the standard neck MRI and neck instability, the neurologist suspects Chiari Zero while admitting that C. Zero is "up for debate" within the Chiari research community. My daughter is still waiting for the standing MRI appointment but her neurologist and cardiologist are already telling her to expect surgery. She'll definitely need pins for her neck instability but it seems early to determine what else is needed. Her newest symptoms are debilitating so she was excited about the prospect of surgery giving her relief. Her cardiologist said he'd want none other than Dr. Rotake at The Chiari Institute to do the surgery. I know there was a scandal, years ago, but it seems as reputable a place as any (no more, no less). I've also read wonderful things about Dr. Oro in Colorado. Has anyone had personal experience with either? We live in northern Virginia but would be willing to travel. Thanks for any insight or experiences shared!