I have had ATN and TN since 07/06/06 at 6 am. I was officially diagnosed on 07/18/06 and was in so much pain from this monster pain I was desperate for a cure, an answer, anything that would help. The neurologist I first when to tried me on all the usual meds and med after med I had allergic reactions to. I was getting depressed and thought that I would never have a pain free life again. I got online and found a local Neurosurgeon that does hundreds of this procedure called a MVD. The doctor pressed to me that this was my only option. I read the risks (it did not say anything about AD) and knew that the procedure would keep me pain free for months to years. I signed up right away and my surgery was scheduled for 08/2006. I figured like you are probably now, why aren't people signing up for this potential cure?

Well, my surgery was supposed to be 4 hours long and I was to stay a few hours in ICU and 3 days in recovery. My surgery was 5 hours and I almost lost my life on that table. I was told later that my main artery wrapped several times around that 5th cranial nerve. He had to "make" a tool to get back to the end of the artery. I lost a lot of blood and was in ICU 36 hours and stayed in the hospital 7 days.

When I woke up from surgery I had a numbing feeling, but still felt the pain on my left side of my face, gums and tongue. It was weird like I went to the dentist and the Lidocaine was wearing off kind of feeling. I cried and cried but had hope in what the doctor had told me was true. I couldn't have been more wrong. The surgeon had told me that it was normal to feel this but to give it two weeks before going away, after two months visit he said give it 6 months. I will tell you to this day I have that and know now what it is called Anesthesia Dolorosa.

After all that I still had to go through lots of different meds and ended up on taking: Nortriptyline, Dilantin and a small dose of OxyContin (10mg). I am still not pain free but I am at a level of pain I can deal with. I believe that if you can keep your mind busy then it will bet better in the long run. I find that at my work I am so busy in a day that I tend to not notice the pain until I get off work, am bored or trying to go to sleep. You definitely need good support and lots of optimism as this is a long road ahead.

For me the AD pain is constant, varies with stress, cold, wind and just touching or brushing up against my face. Warmth doesn't really bother me that much. I do feel tingly prickliness all the time. It is frustrating because I know now that this will NEVER end. I have anxiety attacks at night and have to take sleep aids to get to sleep. The worse thing is that I am still having the TN shocking pains. The doctor I see believes that the nerve was only partially damaged but was enough that it will not go away.

I think people should research MVD route because of the risks of surgery, the recovery and the fact that the surgery is not a guarantee as the surgeons will tell you for ATN it is 50% and TN 85%. This is a brain surgery and that alone is scary. I could have died on that table leaving my husband and three kids ages 7 years, 4 years and 8 months. That scares me just thinking of how close it was.

If asked if I would do it again? I would have, knowing how desperate I was to get rid of the pain. However, knowing the outcome of the surgery, I would not have chosen this route. I hope that through my experience that I can help just one person and they can help someone else. Remember we are together and not alone. Good luck in whatever you decide. Sorry, so long and wordy.