Hello!

I only posted a few times before I had the MVD surgery. I only had TN for 10 months and that was 10 months toooooo long. I had atypical and typical pain presenting itself. I was diagnosed almost immediately. I read a survey of approx. 1400 or so of those suffering with TN. Only 5% were diagnosed as fast as I was. The meds did a good job of controlling the TN for awhile and then the TN would jump over the meds. Of course I would have to up them. TN was very aggressive. The atypical pain concerned the surgeon. It presented itself in attack form that lasted for 30 minutes or so then went away. The typical pain was controlled well by Carbatrol. My body was starting to give me dizzy spells, blurred and double vision. My neurologist linked it to the Carbatrol so I looked at alternative means of help.

I had the MVD surgery on Oct. 7, 2010. The surgeon found 2 significant blood vessels wrapped around the nerve. He said one of the blood vessels was next to the brain where the nerve came out. He said one surgeon in Oregon contended that this caused atypical pain.

Today I am completely free from TN pain - both atypical and typical! Unfortunately the surgeon's instruments caused an electrical charge that damaged the nerve. I have had a constant burning on the right side of my tongue (as if scalded) and sensitivity in my front bottom teeth and bottom right lip and the right side of my chin. It was a nightmare after the surgery for months. I also had a very negative experience with the hospital's staff for the 6 days that I stayed there. They didn't know how to handle someone suffering with level 8 plus pain from a damaged nerve from surgery. I have this strong negative adversion to hospitals now.

For the first 5 months after the surgery, I couldn't talk more than 10 percent with out strong pain in my tongue for days after. Just recently, I can talk 60 to 70% without repercussions. The nerve has been slowly but surely healing over the last 6 months. I have slow but constant improvements. I am on 600mg of Lyrica and 400mg of Carbatrol. I hope to get off more of these meds soon.

The net is that I am currently function at 70%. I am in constant pain now but it is pain that I can easily be distracted from. It has taken time, but it is under a level 4 and normally a 1 or 2. I have Dilaud if it gets above a 5. The best part is that I have no TN pain!!!!!!! I can garden, clean my house, cook, raise my daughter well, enjoy holidays, all the normal things that were snatched from my hands when TN reared it's ugly head. I may have to do things slower because the meds make me tired but I am ok with that. I also expect the nerve to heal completely.

I would definitely do the MVD again with out question . . . I would not use the same surgeon though! Hindsight is 20/20 (huge smile!!)

The main reason that I am posting my experience is that I had atypical pain and it was completely eradicated from the surgery. Also, there is a theory that where the blood vessel is located around the nerve (i.e. next to the brain) that it can cause atypical pain. I thought this information may be helpful. I have absolutely no atypical pain now.

If you have questions, I will try and answer them as best I can.

My best to you and yours!
Rae of Hope