Hello, I have a case of TN brought on by my having MS. I've had MS for 17 years now and this is a byproduct. I recently had an attempt at a Gylercol injection but I awoke from my procedure to the Dr telling me it could not be done due to a vein blocking his path and he referred me to the University of Minnesota hospital to talk about doing the Gamma Knife procedure. I currently take 12-14 pills per day to keep the TN away from acting up. Trilipel & Gabapentin. Oh fyi, his attempt made my face both numb on the right side and I hear a constant swooshing in my right ear, the other branches of the nerve near my mouth are starting to act up a little now.
I would love to know if there are others that have TN and have MS. I cannot do an MVD procedure as this does nothing with the MS.
I have MVD 2 years ago that didn't work now I am having Gamma Knife this coming friday am I scared ohhhhh yeahhhhh! I feel for you I have it bad myself. I live in VA where are you?
Jeff, I have heard that some people with MS actually have had success with MVD as they had a compression on their nerve unrelated to their ms. Maybe something to ask your neuro ?
I’m not familiar with the gamma knife procedure. But I wish you luck and hope you get some pain relief soon!
We do have a group of MSers here on the site, just hit the group tab on your upper left.
Mimi
I have MS and TN ... lucky us, huh? I agree with Mimi that people with MS can also have a nerve compression not related to MS. My neurosurgeon thinks it's possible that I have both (MS related TN and a nerve compression). I haven't had surgery because Neurontin is managing the pain well and they don't want to rock the boat.
So sorry for your numbness and ear issues. Take care!
Hi Vicki, I take both Neurontin/Gabapentin & Triliptal ( spelled wrong..LOL ). I asked my neuro and he said it was MS. I know things could be way way worse. I just miss being able to take a vacation. I don't anymore for fear of having a facial nerve pain attack... Oh well, such is life. Just keep on trudging along!! LOL