6 month checkup

So we went to New York for the 6 month follow up. Exhausting as anything is. We flew JetBlue to JFK. Direct flight was nice. Enterprise Rent-a-Car not having a hand control vehicle was not. The Enterprise trauma was long and boring, I'll limit the retelling to the fact that it took them 4 cars over 3 days to sort things out properly.

Had a new MRI at MDI on the 3rd and then saw the new neuro @ TCI on Friday and saw Dr. Bolognese. Got to see Lisa & Theresa and a few other people and talked on the phone to Denise when she called Dr. B during my appointment. Everyone is really happy about my progress.

The general attitude is that I hit the lottery as far as results go. Best possible and then some. I am trying to just celebrate that. I am happy about it really. Can't help but be frustrated about the continuing symptoms tho.

But back to the appointment. I'm going to have a few more tests and there are some things still going on, but they are really happy with how the surgery went and how I have healed up from it. My neck is still in spasm and they're having me up the Flexeril, which the pain clinic took me off. Pituitary gland hasn't gone back to normal shape, but won't worry about that for another 6 months. At that point if I'm still having headaches and nausea we'll do another CSF compliance test and take steps if necessary. They want me to continue following the Infectious Disease path, seeing if it is the cause of some of my symptoms.

Their initial presentation of the connection of EDS (Ehlers-Danlos Syndrome) and Chiari Malformation is available on the TCI site now.

I got to meet Eliza finally, which was cool. We went to dinner in the lower east side and got to catch up a bit in person. It was really fab to get to meet her!

Our docs are in heavy rotation on the Discovery Health Channel's 'Mystery Diagnosis' talking about Chiari Malformations, Ehlers-Danlos Syndrome and the like.

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