I am scheduled for surgey on the 6 of Jan, and after reading all the post about how it didn't work and how it only worked for some for several month, i am scared now. I am on carbatrol 4 times daily, 200 mg each time. I have to constantly be on my guard and not wake up the sleeping giant. I guess everyone knows how that feels. It pretty much in remission cause the drugs are working so well. My surgeon has been doing this type of procedures for over 9 years, and swears by it. His success rate is very good and he didn't recommended the alternative because he says i am plenty young and this procedure would last for a long time if not forever. please help me in this decision..i have already been prepped for surgery, registered and all...thanks for any info.
I have never had an MVD, but one thing i would bear in mind when reading these posts, is that you are more likely to hear from people who have not had a positive result then those who have.
I had MVD on December 7 and am slowly cutting back on Tergretol. I was up to 1200 mg a day and am now at 600 mg a day. I have little "twinges" in my head but no facial pain episodes. The surgeon found two compressions, one a vein and one an artery, and placed two sponges in addition to cleaning up some scar tissue. I was told it may take a few months for the nerve to "settle down" again. To love without the horrible stabbing, electric pain anymore is a blessing and I'll take every day as a blessing!!!
My MVD was in 2009, after the recovery phase, I was realitivly pain free. I still had aches, little reminders, but did well until this winter, have have some return of the electrical, stabbing pain, but nothing as bad as before. It did still worry me each time I had pain that the whole kit and kaboodle was coming back. But I take things easier these days, I normally would be outside with my husband raking leaves etc., preparing the yard for winter, but have had to limit mtself to the front porch cleaning and decorating. The cold really affects my face pain. I have had to go back on low dose meds at times this winter. But I still highly reccomend MVD. I hope a day will come when I don't have to worry about how cold it is outside (or in!).... kg
Dont be scared. I know that its terrifying, but there are a LOT of people, including myself, that have pulled through this surgery just fine. You will find most people on here, are here because they are still in pain. I think most people that have had success, wouldn’t need a support group. So take that for what its worth. I’ll be thinking about you
I really appreciate all the comments and words of encouragement on here. I am looking forward to the surgery and hoping that it takes the first time around. The weird thing right now is that i feel like my TN has gone into remission...i have never gone this long without having some sort of pain, even while on the medication. I am on 1000mg of carbitrol sometimes more. I hope i will be able to get off of them completely. I suffer all the side affects including suicide ?.. I am a strong Christian and i pray daily for the strenght that God wil get me through it. Stress has been very high on my plate this Christmas and i have had to really try to not let it get to me. I will keep everyone posted..I really hope that all of you will at sometime find some relief and or get rid of it completely cause i feel your pain...literally...peace and love to you all in the name of Jesus...
I guess I don't want to put a damper on this but I had MVD and it lasted only 2 weeks!!! Not long after I had a Glycerol Rhizotomy and that has lasted the longest. Right now I am on Tegretol and Neurontin and that's keeping the BIG pain at bay. I still worry about getting that SHOCK!! I am trying to learn to live with it and not isolate as much. I wish you well. Sheila
well gang, here it is 8 days post op. i am still having some twinges in the lower lip and taking carbotrol twice a day. I am still recovering at home for i hope only another week. the surgery went great according to the surgeon and he said i had a main artery wrapped around a nerve and had to place a spacer?....well according to him it was good. when i first left the hospital after 3 days my vision was very doubled and i had a lot of trouble focusing. Now this date i do have little bouts, only if i am real tired and have not rested as i should. I get so tired of just laying in bed. I don't hardly feel anything from the incision and my stitches will just melt away. I don't know what else to say, was it worth it? I don't know yet...it was a very hard surgery and i was very sick from the anesthesiology for 2 whole days and was in ICU because of it. Would i do it again? Of course if it meant getting the results i have right now. If anyone has any questions pls feel free to ask. I don't know if i have answered all of them...thanks and have a pain free day!
