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Old 04-12-2011, 09:32 PM   #44
Join Date: Apr 2011
Location: Raleigh, NC
Posts: 1
AnitaFlood HB User
Re: Trigeminal neuralgia

Hi ya'll. I have had TN for about 6 years. It started out with just a few "twinges" now and then but got progressively worse in a year's time. Started out with Tegretol which worked for about 2 years, then my doctor increased the dosage. Also took Baclefen and Gabapentine. When the medicine quit working altogether in the winter of '09, I found a surgeon in Winston-Salem, NC who had treated a lot of patients with TN. I made an appointment and within 2 weeks I had the microvascular decompression surgery. I woke up from the surgery and had no pain. A little numbing around my mouth but that I could deal with. I was in the hospital from Monday to Thursday. On Friday, I went to work for a few hours. I was pain free until May of 2010. The surgery I thought was a failure. Only lasted 5 months. Put back on Tegretol. I went to see my surgeon Jan. 2011 for a yearly follow-up. I asked him "Why did it not work?". His answer was that something was putting pressure on my trigeminal nerve. He said that looking back at my MRI he noticed that I had a severe sinus disease. I also had polyps up my nose. He said that we would try to control the "flare-up" with medicine and when that stopped working we could try the Gamma Knife. Talk about depressed! Just last week when my prescription ran out, I called him to renew it, he said he would but that I would have to go back to my Family Doctor. My family doctor had written the previous prescription but said I would have to go back to the surgeon. Now I am getting bounced back and forth and don't know where to turn. I am currently unemployed and how in the world do you go to job interviews when you can't talk half the time or stay awake? Anyone out there know if you can get put on permanent disability because of this condition?