re: Trigeminal neuralgia - dealing with severe nerve pain - 15 month Update pg3

Just for an update

She got her MRI’s done and there was no sign of regrowth from the tumor. This was great news!

The pain is coming from a blood vessel that’s resting on top of her left TN nerve. It’s in the exact spot where the surgery occured, but our doctor wouldn’t confirm the surgery caused it.

Originally she was prescribed gapopentin and recently he wrote her a script for tegretal (sp?). She has yet to take either.... as I have stated numerous times in the thread, we are hesitant to be on pharmaceuticals. However, she is considering starting to take the medicine just to clear her head (pain) long enough to figure out what she wants to do

It seems this will be a lifelong battle.

The other options were surgery. One was to reopen incision (behind left ear), remove the piece of skull to access site, and put a buffer between blood vessel and nerve. 70% success rate - she said no

Second was to put a needle in her cheek (going up towards eye) and injecting alcohol or inflating a balloon of sorts to kill the nerve. 50% success rate. But it would make half her face numb and she’d lose her smile - the only thing she has right now.

Just wanted to keep y’all updated and hopefully have an ongoing discussion here. I appreciate all the feedback and stories.