As I had promised to keep you all up with my progress I thought this was a good time to post. It’s been 70 days, my surgery was on June 9th, lasted about 4.5 hours and was successful. My MRI only showed 2 compressions but once inside they found that my brain was wired up abnormally so it was easy to locate the problem. The pain from TN was gone from the moment I woke up and still hasn’t been back. My last flare up started over two years ago and never stopped. I’d been on lyrica and tegratol for it but even that wasn’t working well for those two years. It would reduce the pain long enough for me to eat and the side effects were insane. I had many side effects from the surgery in the beginning that have cleared up in the last two months. I still get the odd sharp stabbing pain in my head at least a few times a day, I have pins and needles, burning and pressure on a large area of my head because they had to sever a nerve. I take 150 mg lyrica for that. They say it might go away and it might be permanent, either way it’s really no big deal compared to TN. I’m still getting pain around the scar and it feels like there’s a wire along its length, my head feels very soft in the area as well. I still get tired easily and If I’m over tired or stressed out I get a headache. I haven’t gone back to work yet, they said I could rest until September 15. It seems like a long time but I’m thankful. The last problem is my memory. It’s horrible. I can’t remember what things are called, I forget having watched movies, read books etc, I forget people’s names. The Dr says this has nothing to do with the brain surgery but may be a brain chemistry issue from the drugs I’d taken for so long. This sounds a bit odd to me and if anyone has had this experience please let me know about it and what your results may have been. The top thing of course is that I generally feel good, I’m off the tegratol and down to 2 lyrica so I’m 9 pills less per day!!! I’m no longer a walking doped up zombie! I haven’t felt the lightning since early afternoon June 9 2014 and I wish I’d done this year’s ago. There’s always the possibility this will return but I can’t think about that or at least I try not to. Often when I wake up I expect it, oddly also when I go to brush my teeth. So if any of you are considering MVD it’s not as scary a procedure as you may think. Trust me, I’m a wimp.
Thank you for posting, Pierre, and I am glad you are doing well. You may want to open a discussion about the memory issues, if you would like feedback from other members.
I don't know Jamie, the dr tried to explain it to me but I don't understand it.
I am considering it. I am see the Neurologist next Wed. I have been taking Tegretol since early Feb it worked at first then I was told to double the dose still getting electrocuted actually worse that in the beginning sometimes I get hit in rapid succession like a strobe light it puts me on the floor. Now I am told to triple 600 mg a day I can't concentrate I am experiencing memory loss and I also can't think of what things are called. I don't want to take this medication anymore I am worried the memory loss is permanent. After reading your blog I just might not go up to a triple dose until after I see the Neurologist. An Oral Surgeon has been treating me up to this point. I work from my home computer mostly I can't imagine not being able to work for more than a week. Do you think you would have been able to handle working at a computer a week or so after surgery? Thank you for updates I just joined this group and your information is fresh and pertinent!