I ran into a friend who has TN. Yes, I actually already knew him, and he is in my town! He mentioned that he just had a treatment done, and that radiation was applied to his face at the point where pain occurs. He said that there was no down time, no recovery time, and that he has not felt any pain at all since. He was part of a study…
I am having trouble getting in touch with him to find out more. We could not talk more then, as we were at a funeral. Does anyone know anything about a treatment like this? Sounds wonderful so far.
I had a radiation treatment called Gamma Knife.
Was it successful? Are you still in pain? What was the recovery time, etc.?
It worked for awhile, like 8 months. I had it done a second time and it worked only for a few months. I went for MVD and it didn’t work. The only thing that works is 200mg Carbamazepine x 3, sertraline 50 mg x 1, and amtriptyline 10mg x1. This combination works for me. I have had TN for about 15 years, so I have experimented with other drugs my doctor prescribed, these work most of the time. My triggers are winters wind and low barometric pressure. I can tell when a storm is coming, call me crazy but I can feel it…most of my pain, electric shocks are around my right side of my mouth. Pretty sure it was caused by a dental procedure (root canal)15 years ago. I hope this helps. Gamma Knife is an easy procedure, go for it.
Sorry I didn’t answer all your questions. With Gamma Knife, there’s no down time.
Thanks for taking time to reply. Yes, Gamma Knife does sound pretty good. I will consider it more carefully.
I myself am 10 years in the TN struggle. I take 3x200 mg. tegretol a day. Usually that is enough to catch most of my pain; except when it is late summer. Heat is more of a trigger for me. I absolutely believe that you can tell when a storm is coming. It is the same for me. I can sometimes even tell the direction from which it is coming. There was a tornado warning in the area Saturday, and I could tell from a sudden drop in my pain that the storm had ended.
Grace and peace to you! Many pain free days.
I had cyberknife. I assume it’s similar or the same as gamma knife. it wasn’t intended to help with my everpresent pain that feels like you have the flu every minute of every day on one side of my face, with random surges of extreme pain. after the surgery, it does seem as if the lightning-strike tazers to my brain have seriously decreased, but I don’t realistically know if it was the surgery or the carbamazepine. the rest of my tooth pains and constant pain is still there, and I’ve started to feel like someone is burning my face with cigarettes, and my ears have started to feel like they’re on fire.
it’s supposed to have about a 70% success rate, but I just don’t know if it was worth all that money. WITH insurance, it cost me about 3K, mostly because it was considered a 2nd tier service provider
So very sorry for your extreme pain. Doubly sorry that the surgery did not work out for you, and that it was so expensive in spite of insurance. Hang in there. The game is not over yet.