I had my MVD on October 30th and am happily weaning off Tegretol. I was on 1200mg/day (6 pills) and am now down to 400mg/day and will be all the way off by next week. The pain has nearly disappeared. I have been pain free on my lower trigeminal nerve path since the surgery but I was left with one spot (one tooth and the gum/cheek area over) that is still bothersome at times. I would not call it "pain". It is more of a sensation or pressure that comes and goes. I know that my nerve probably still needs to heal a bit more but the healing seems to have stalled at this point and I'm left with about 5% of what I had before surgery. It seems like it will be totally OK without the meds but I still have 2 more pills to go until I wean off all the way. Mostly that pressure sensation is just a reminder of what I had before and quickly disappears but sometimes it is a bit more and scary of course.
I am visiting my neurologist next week (possibly for the last time) and want to ask the right questions, ask for the right tools if I need to deal with that leftover "pain". I know that there are lindocaine patches/creams that I think need a prescription so I will ask for that possibly. The advice I need though is what else have all of you out there used for that extra little bit of relief - lindocaine or other creams, supplements, dietary measures, acupuncture, or other approaches? I just want a little toolbox that I can access when needed. Also, for those that had an MVD, how do you get over the fear? I am headed on an 8-night cruise soon and am scared to be out there in the world (other countries) and having my TN come back full force with no access to meds. I know that is not going to happen but I'm still afraid.