Thanks Nikki! I love when I get replies from you guys! I have a smart phone I get notified right away.
I think I did read that on your bio page, or another discussion blog, and thanks so much for the information. Maybe I will look him up in the future.
I was thinking FOR SURE now I have a tumor inside my neck or something! This pain is horrible, and much more so since I went off the Neurontin! Neurontin was keeping it at bay, but I cannot keep gaining and gaining!! So I will live in real pain for a few months until I can't stand it anymore and decide to go back on it.....LOL!
Today I took a Topamax and I supplemented with half a Vicodin..and it still hurts!
I hope you have a good weekend yourself. Happy Mother's Day weekend!!! Kara
Hi Kara,
I had all the same pain variations as well. It’s just that the majority of the pain was in the form of a shocking swallowing pain or the pain in the ear. I had my surgery in vancouver. My neuro surgeon does the MVD for trigeminal neuralgia as that nerve carries far more critical facial & swallowing functions. But for GPN he feels that leaving sponge & teflon behInd is riskier than severing the specific pain roots of the GPN nerve. From what i’ve read on here & elsewhere, i can see his point as i keep hearing from people who didn’t have a successful MVD or it didn’t last or they’ve had a variety of negative after effects like meningitis. I’m suprised though that no one else has come across a surgeon who does the procedure this way.
BothLyrica & trileptal were effective for me for a good chunk of time. Of course they’d all lose their effectiveness over time.
Hope u get some relief.
Ron
Hi Amy, I’m trying to see what happened to you with Dr.Alksne but lost the comment thread, did you end up seeing him for surgery? I’m scheduled to meet him for the first time in a couple weeks. I was curious to know your experience with him?
Thanks!