I had successful MVD this May at a major hospital, with a neurosurgeon who has worked with me for 11 years.
He treated me twice with Gamma Knife, then with gabapantin (up to 12 mg four times a day). Before that, I had struggled for 10 years (1987-1997) to get the proper diagnosis, then relied on Tegretol for two years. I hated it, and was on and off it. Finally, I was hopitalized because the levels were dangerously high. Then the Head of a major pain clinic, who often performed rhizotomy, tried twice to operate but could not because of the structure of my face. He then sent me to a new Gamma Knife facility, and thanks to that procedure was painfree immediately. With no meds, I remained painfree for 5 years. By then, I had moved to another city with excellent medical facillities.
When the pain returned, I saw my current neurosurgeon and asked for Gamma Knife again. Again it succeeded, and I was painfree with no meds and no side-effects. The pain returned five years later, the same procedure produced the same excellent results. Last December, the TN returned. This time, the neurosurgeon said Gamma Knife was no longer an option. The nerve had atrophied, and was too fragile to permit zapping itagain. He put me on neurontin (gabapantin). I survived until May, taking up to a maximum of 1200 mg 3 times a day. I was working in Europe, and relied on getting a prescription from a wonderful doctor there when I told him what I needed. When I got back to the US, the neurosurgeon recommended MVC, so I had the procedure done on Thursday at the end of May.
When I woke up, I was painfree. I had some nausea the first day (no medication for that), and a slight headache (controlled by 1 Tylenol each day). I was up and walking (and climbing stairs) the Friday after surgery; no nausea or pain. Some feeling of fluid in my right ear, but I was told that would pass--and it has. On the Saturday after surgery I went home at noon. I have been given a great prescription: no lifting, driving, housework, or cooking for one month; just "loafing around." I am still painfree, with no headache, no hearing loss, and no sense of fluid in my right ear.
I still take a smaller dose of gabapentin (900 mg 3 times a day) to prevent seizures that might result from immediate cessation. I tire easily, but have no pain, no headache, no hearing problem, no sense of fluid in my ear. I m fortunate to b a teacher, so I don't have to return to work until August. However, I am cleared to participate in a conference in my city late in June.
I hope everyone has the good experience I had. I would say that it is best to choose a neurosurgeon or hospital with a good website about their treatment options for TN. Then you can be sure they have the necessary experience to help you.
Like any academic, when TN hit I began to do research--not just to get help, but to understand how this disease was treated years ago. I found a casebook for an important 17th c physician, in which he describes what could only have been his own attack of TN. He "treated" it with "warm flannills" in a warm room. Very conservative. I also found a 19th c book in which a physician claimed success in treating TN with "ferrous sulfate powder." His book is full of patient narratives and is heartbreakiing to read. I hope to publish these historical results, along with others. My neurosurgeon tells me that Jefferson Davis also suffered from TN.