I have been reading and following all yr comments. Am in the same troubles as u and dont know which is the right solution. Was pain free for two weeks and right now the pain is going to deep in my ear starting from the throat, but is mild and i know it will become stronger with time. I just wish i could open my head and see whats wrong? I just want to inform u that to get relief I use a combination of accupunture/accupressure and tablets - Lyrica and Amipritlene. But am scare if one day it dont work anymore and want to prepare myself what surgery and where to go????
My only suggestion if surgery is needed to try and go to a major medical facility with a lot of neurosurgeons and expertise, especially in trigeminal neuralgia (chances of finding surgeons with GPN experience will probably be limited). And keep in mind that some will do MVD, others only rhizotomy. which is better seems to be up in the air and probably just a difference in doctors. Definitely talk to them about it. Obviously MVD keeps the nerve alive; rhizotomy destroys it, but from personal experience, it did stop my pain. Good luck and hang in there. I know i just got tired of all the drugs and was to the point they no longer worked that well, which took quite a few years and episodes to get to that, but i was at the endpoint with them. maybe could have tried others (had been on Tegretol, Neurotin (both at extremely high doses) and also Elavil). i was just sick and tired of it and wanted to try a permanent fix.
After reading some of your post, I may need this same surgery. My pain is a sharp stabbing pain deep in my right ear (no infections found by ENT's over many years of my life). At times the pain will be below the ear and down the backside of the neck. The reason I am posting here today is because for the first time in my life this pain has been ongoing now for over two months (typically leaves in a couple weeks). Without strong med's I can not function.
Now that your pain has stopped, can you please tell me what else you feel with the 9th & 10th cranial nerve cut? Do you have numbness in your face, tongue, throat, etc.? Could you end up like some Bell's Palsy patients and one side of the face droops? I'm just trying to get an understanding of the risk involved with this Rhizotomy. Thanks so much for your information on this forum!
I have absolutely nothing happening that suggests I had surgery. At most, sometimesit might feel like the skin is slightly stretched as if I had surgery, like any surgery sometimes feel. I have had many and it is common in all. But in terms of the GNP nerve, nothing. No pain, no lack of feeling or taste, no droopyness. For the first time in a long time, feeling thebest I ever had except for. All my other aches and pains from being old and out of shape. But they all feel like a hang-nail by comparison. Good luck!
Just wanted to find out if you are still pain and meds free after your Rhizotomy. I see from you post that it will be 4 years in August since you had the op.