Finally saw the required neurologist today. I decided to not pre-judge this doctor and see what he had to say, before I told him what I felt. I am happy I did. This neurologist is new to my local hospital but did his clinicals at the Mayo Institute. That gave me some hope. He took the time to first, diagnose what causes my headaches, which is his specialty, pain management. He listened to me and diagnosed me as being "over-shunted". He took the time to not only tell me what he saw, but he showed me and my husband the scans and explained what he saw.
Anyway, he says I am a complicated case, but he feels a programmable shunt is the solution. He did give me the names of 3 of the top surgeons who handle my type of situation, but since one is in OH, one in MN, and one in CA, I could probably get my PA insurance to pay for it, I just can't afford to travel that far. So, my alternate is to go back to the neurosurgeon I recently saw. I'll call him tomorrow and hope he does not make me go back for another consultation before setting up surgery, but I'm sure I'll have to make that extra trip.
At least my ball is finally rolling.