Wednesday, May 16, 2012

Appointment with the PCP

Today I met with my PCP for pre-op stuff. She had to sign a bunch of papers, do some bloodwork, and basically evaluate me to make sure I'm not really nuts and stuff. I'm pretty sure I passed but you never know.

We have to find me a good neurologist to monitor me after the surgery and a rheumatologist to deal with the Ehlers-Danlos Syndrome. It's not going to be easy since most doctors have limited knowledge of Chiari and some haven't even heard of the EDS. To make things easier, though, my PCP shares in my frustration with the lack of knowledge on these things and has threatened to go back to school to specialize in Chiari herself. I think she should. There is clearly a market for a knowledgeable specialist who can monitor things after surgery. The forums are filled with people looking for this very thing.

I saw my family over the weekend and tried explaining this thing to them. They were confused (aren't we all!) because they thought this surgery would "cure" me. It's hard to explain that this isn't going to cure me, it's just going to stop the progression of the condition. It might not even help my symptoms at all. We actually don't know WHAT it's going to do until after I get out of it and start recovering.

In the meantime, I am busy taking pictures of everyone and making notes, just in case they clip something while they're in there and I forget who everyone is. Incidentally, I am doing the same thing for the cast of CRIMINAL MINDS. 

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