It was just two years since my operation (Vats surgery done at Columbia in NYC) and I'm happy to say I'm off all mestinon, still going for the IVIG but have moved it out to every 10 weeks.
The first year after my operation I did not notice any change, was taking 60mg of mestinon every 4-5 hours. Even the firt 8 months of the second year I noticed little change, but the start of 2012 I felt a big change. I slowly started only taking mestinon before a meal,about 3 pills a day, then two and in Jan stopped all mestinon (I never took any other medication).
I had the operation at 66 years of age, some doctors don't recommend it in the later years but lucky for me the surgeon was a believer in the treatment.
Not sure about the weed, I do drink and that has never seemed to bother my condition which was mainly in my eyes (no double vision) and mouth, eating, talking etc. So good luck and it may take longer than You had hoped, but eventually it should help.
Originally Posted by kimmyF
I'm now 6 days post Thymectomy and I'm feeling great, I'm probably doing WAY to much, but I seem to be handling it okay.
My neurologist said that in a month the thymus antibodies should be out of my system and I could start to wean myself off of the Mestinon and suggestions of what the best way to do this would be?
He has also said that I won't need IVIG anymore.... Which kind of scares me, I relied on this every month and would be fairly weak by the time my 28 days was up, I'm very pessimistic about this whole situation.
Also, please don't judge me on this, I smoke marijuna and I'm wondering if anyone knows when it is safe to smoke again after them collapsing my lung???
I did the Thymectomy in hopes it will put me into remission although I'm not holding my breath.