After my diagnosis, my neurologist told me she would not recommend any surgery of any kind unless it was extremely necessary. I've often wondered about thymectomy surgery since I hear that is recommendation too many. I sort of felt like that was a contradiction.

Faye recently had surgery for a broken leg bone, and ended up back in the hospital afterwards for breathing issues. Thankfully, we didn’t reach Crisis stage, but if we didn’t have such an awesome neurologist we may have. Definitely talk to everyone involved in the surgery beforehand. Take the chance of being labeled a ‘know-it-all’ and advocate beforehand for your loved on. Contact your Neurologist and discuss all your concerns ahead of time. I wish I had known before what I know now.

The surgery team used an anesthesia that was supposed to be ‘better’ for MG because it didn’t affect the neuro-muscular junction, but Faye still ended up with post anesthesia shakes which caused her oxygen to drop to the upper 80’s afterwards. The recovery nurse thought it was ‘normal’ and just taking a bit for her to fully wake up. She sent her home on canister oxygen on Friday, in spite of our concerns.

I left a message with Faye’s Neurologist’s office and kept her on 2 Liters of oxygen over the weekend and was able to keep her oxygen in the low 90’s. The neuro called Monday morning and told me to get her back to the hospital. After extensive testing and a few days in the hospital, we were told that the combination of anesthesia and the pain meds had caused the lower part of her lungs to get really weak. A med change fixed the problem within a couple days and we were able to return home with a lesson hard-learned, but no permanent damage, thank the Lord! I cringe to think what would have happened if I hd not called her neurologist, or had Dr. Lee not been so conscientious. Be proactive, and involve your neurologist in EVERY medical decision!

Other doctors are very intelligent and full of knowledge, but MG is not their specialty. And it’s rare. There are some excellent doctors out there who just don’t know about MG. I had a wonderful hospitalist tell me, ‘You know more about MG than I do because you live with her every day. You tell me what your concerns are, and we will discuss them with Dr. Lee

Goodness Geoff and Michael, I am so sorry this happened to both of you. I know now, and that's only thanks to the anesthesiologist that I must let my neurologist know ahead of surgery.

I was ok with the anesthesia, but i noticed my symptoms worsened for 3 days or so. Im sorry you had to go through that.

I am very lucky as I have 5 surgeries this year ,different anaesthetist on 3 of the occasions and consultation with them each time and I had consultations prior to surgery each time and my Doctors were very good as I have other conditions as well as MG , each time I was kept in icu overnight and the next day for the smaller. Ops and longer for the 2 more complex surger.I had all surgeries in the same hospital and also have my infusions there so my doctors fortunately knew about MG which is better than my GP who had no idea at all and then was quite excited because I’m a really complex patient and is now well educated in MG
I think it was the time spent in ICU really helped because I was under close observation and then time spent in a general ward in hospital kept me safe