This is my first post. I hope I am doing it right--I find it a little difficult as to how I am to navigate here. Re: surgery/anesthesia--I have CMT Type IIC and I know with this you have to be very careful not to get too much oxygen given to you as you can get Carbon Dioxide build up. I have seen this in my Mother, Brother, and daughter. My Mother died after he lungs "thought they were ok because of the oxygen and wasn't; my brother almost died and had to be intibated. My daughter became like an uncontrollable zombie and I managed to shake, pat, etc. enough to get to woke back up. With my Mother, she was in the hospital and I told the nurse what I thought was happening and she basically ignored me and said she didn't think so. The second time I told her she said we will check it and sure enough I was right and she admitted it but it was too late because when they turned the oxygen down Mother's lungs couldn't readjust. We warned them about this with my Brother but it happened anyway=--again I think they pretty much ignored us.
We, as patients know a lot more about some of this stuff that the Doctors or nurses because it is a rare disease and we have seen or experience more that what they have read.
Bobbie