Does anyone know of expert in Chiari 1 with possible cfs leak and meningeal diverticulum?

My daughter has seen all the supposed experts in Phoenix only to be told she has option of getting surgery if another doctor recommends it or paying $40,000 to to enter a doctor's new study. She has had every test imagineable but lumbar puncture and understanding that it is dangerous with a known chiari. No doctor has run the Cine (sp?) test and don't seem to want to do it. She has horrible pressure headaches which are non stop, dizziness, paresthesias, and fatigue. The 'top expert' in Phoenix says she has unrelenting headaches and it probably is related to a CSF leak but will not pursue without lumbar puncture. It is like she has to have a brain disaster before these 'experts' will act. She cannot take pain meds due to spincter of odi disease. She has lost her business and seems to be giving up her usually 'can do' attitude. Is there a center or group known to deal with a Chiari 1 with cfs leak and meningeal diverticulum? Is this just too complicated for doctors, especially in Phoenix? Please give any suggestions for help. This is going downward quickly . She does have a PPO and has paid all her bills so I am lost as to why the doctors seem so detached and disinterested unless they can bill for an extensive surgery. Please help.


I’m so sorry your daughter is going through this:( She is very lucky to have you advocating for her:) I’m not from the Phoenix area, so I don’t have personal experience with the doctors down there. There are lists of patient recommended doctors…You can find links on our resources page and doctors page. You may need to travel a ways to see a specialist, but from what I’ve heard it’s worth it. I hope this helps and that your daughter gets the care she needs soon:)


Im sorry for what you are going through. If you arent against traveling to Colorado, I will go see Dr Oro. While I was there the last time, I met a lady that had a lot more problems then I did, had surgery far away from Colorado, it was messed up and she traveled all the way to Colorado for Dr Oro and he had done wonders for her. Send me a message if you would like more info.