Originally Posted by A.ee

Hi, I live in Phoenix, AZ. I really need help understanding this and finding a doctor.

My cerebullar tonsils hang 4 mm, so I believe this is CM1?. As crazy as this sounds, I was actually happy to put a name on what I'm experiencing. I unfortunately had no idea the uphill battle of finding a good doctor.

Today went to a neurologist, who told me "there is no such thing, it's nothing" in regards to Chiari Malformations, and further commented that I'm "an anxious person is all," regarding my arm numbness, lack of concentration, etc. I cannot explain how much my head hurts. I feel as though I'm starting to get depressed, I feel as though there is no hope. I'm 35. I shouldn't feel this way, but I do. I need help, anything, in finding someone who will treat this.

Does anyone live in Phoenix or in AZ and can you provide your drs name? If not, what kind of dr. treats you? I talked to a dr today, but also said he bills patients directly and does not accept insurance of any kind. his first session is $560. I cannot afford this. Is this typical?
Should I attempt a neurosurgeon, or is that too high of a specialist?
Does anyone know of a list of providers (note: I found some lists per 2011, but I've called and the drs are retired, no longer treating CM, etc)?

I should also add, I called Mayo to find out if they are accepting new patients, but their first available is Feb 2013. God help me if I'm not feeling better by then, I can't wait this long.