I developed TN in 2001 when I was 49 years old. It started with minor shocks on the top of my head especially when I was in the shower washing my hair. It quickly escalated to full blown cascading electrical shocks when I would wash my face and rub my left eye. The first major episode left me on the bathroom floor scared to death. After a few more episodes I saw a neurologist who put me on Tegretol. I took Tegretol on and off as needed and my conditioned seemed to be in control. However in late 2015, the episodes came back with a vengeance. I got back on Tegretol (up to 1600 mg/day) and then also Gabapentin (600 mg/day) but it didn’t help. After doing some research on the internet I decided I wanted to have the MVD procedure done. Unfortunately the neurosurgeon I went to only specialized in gamma knife. He convinced me to try the gamma knife procedure (obviously) explaining the results were just as good the MVD. I was in so much pain I agreed and had the procedure in April 2016. Well 6 weeks after the gamma knife I was still experiencing the same debilitating episodes I had been prior. I wasn’t able to return to work (on a construction site). I couldn’t wait for results any longer. so I set up the MVD procedure.That was May 2016 that I had the MVD and I haven’t had an episode since. I did experience some twitching in my hands a couple months later but that disappeared. I am currently experiencing a slight sensation on the left side of my head/face (“feather touch”?) like I need to wipe someone off but nothing is there. I’m hoping this disappears as I get off the Tegretol/Gabapentin (my primary doctor is weaning me off very slowly). I can actually live with it if I have to. My neurosurgeon said I shouldn’t experience any more pain & that the surgery corrected the problem (blood vessel wrapped around the trigeminal nerve). I understand the horrible pain people are going through with TN. It’s the worst pain I have ever suffered. I only wish I had the MVD procedure sooner. Just curious if anyone else has a similar story.
I have had lots of different symptoms after MVD but none really like TN pain so I live with them. MVD may have done a fabulous job but not 100% so a few branches on your face get a mixed message. I get a ugh burning for 15 minutes sometimes or full numbness for 5 minutes but I have gotten used to these. They do not turn into TN shocks and if I get busy and not talking, they disappear. I wish you continued recovery from TN!
Thanks for sharing. Good luck to you too!