CMT and anesthesia

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.


Hi, Bobbie! I hope you are well and looking forward to the holidays with family and friends!

IT does seem like ptients with rare conditions often know more than the doctors do sometimes. That can be okay, as long as the doctors realiize that and listen to their patients. As patients, we need to protect ourselves, and one way to do that is to carry documentation that supports those rare things; an article, a note from a specialist...something that will carry weight with another doctor. We have to realise that docs that we encounter in an ER know a little bit about a lot of diferetn conditionss, but simply can't know everything. Hopefully, they know this too!

this is interesting, I've had a brain tumour removed before I was diagnosed with CMT, and wisdom teeth. No ill effects, the only weird part is I don't go under with the first dose, i seem to need more or metabolize very quickly. I've woken up and surprised the nurses who thought I'd be out much longer. No nausea at all.

knowing CMT'ers need to be careful is something all of us should know, good or bad.

Be careful and keeping plugging along!