Hello, Allfor,
This is my first time ever to write on a forum. Maybe you will get this message after the screening process is done.

There is hope. I had TN for 13-1/2 years until microvascular decompression (MVD) this past April. It started out as just a twinge of pain one Fall day in 1995, which I thought was my wisdom tooth. I had started working at a very stressful job about 6 months before this episode. No more pain after that until about 6-8 months later when there was a short attack of about 10 seconds in the same place. Subsequently, I had short attacks every now and then, so I had my wisdom teeth removed in 1996 or 1997. The attacks seemed to improve, and I lost track of timing, but at some point I began having pain again, and thought again it was a tooth. I went to the dentist who was going to put a crown on one of my molars in the same area, but before that was accomplished I had very severe attacks and went back emergently, and the dentist decided to just pull the tooth, since my pain was so acute. But that didn't solve the problem; only made it worse, and I was writhing in pain after the numbness wore off.

That was when he realized I had something more than a tooth problem, and I was diagnosed with TN. My primary care doctor started me on Tegretol, which took care of the pain, but I didn't like the side effects, so went to a pain specialist who started my on Neurontin instead. I did very well on a low dose of that for several years.

My high-stress job just got worse and worse, along with stress of raising teenagers, and loss of sleep due to both, which added to my stress. Consequently, my TN pain came back. About four years ago I sought help for the TN, read a lot of literature since I worked for a neurosurgeon, and came to the conclusion that the MVD would be the way to go--if there was an artery or vein compressing the trigeminal nerve in the brain, then it could be decompressed and patient would end up pain-free (at that time they said for life--but now they say not necessarily), and no side effects such as numbness would happen.

But due to a suggestion from the neurosurgeon that I worked for I went to another neurosurgeon who specialized in balloon compressions who said that the balloon compression was a good way to go initially because it was a less invasive procedure. He said the balloon compression, gamma knife, and MVD were all "interchangable"--that after you had one of the procedures, you could have the same one again if the TN came back, or choose one of the other options, etc. . . He said about 85% of his patients who chose balloon compression did not have side effects such as numbness (which is probably the most severe side effect).

So I thought I should surely be in that 85%, so I agreed to have the balloon compression. When I woke up after the procedure, in the recovery room I moved my jaw and immediately had an attack. It was an outpatient procedure, and after going home I had the worst pain that evening that I had ever had--even the wind blowing across my face caused attacks. Every movement of any kind caused attacks. So I went back on Tegretol and called my surgeon the next day. He begged me to come back and have a second procedure--that he would not charge me for it--so I did after two weeks. Well, that did work pretty well for a year and a half, but then the niggly pains began coming back, and I had to go back on Neurontin, and took small doses for another couple of years. But I had irritating numbness on that side of my face from there on out. It got worse in hot weather, and sometimes itched.

In December of 2008 I had a terrible, severe attack one weekend when I was away from home. I had only taken enough of my Neurontins with me for the weekend, so could not double up, and since I hadn't seen a neurosurgeon for almost a year (since my pain was controlled very well), the neurosurgeon on call would not help by ordering a Rx of a few pills until I could get back home. This time it was like a continuous attack--never let up. It hurt so badly that I could not even speak through my teeth, I could not move my jaw, and could not bear to swallow my saliva. I had to blot the saliva as it seeped out, which hurt to have kleenex against my skin. I truly had the "tic dolorosa (sp?) --mad dog disease!

So I went to see a neurosurgeon in the same group the next day I got back to town (the balloon compression guy had retired) --who specialized in the MVDs. He started me on Tegretol, which in the past I had to take when it got real bad, because Neurontin is good for pain, but not for a LOT of pain, and we got the pain under control.

Then I deliberated with myself for four months to decide if I wanted to go through with the MVD. Finally I did, and that is another whole story, but the short of it is that my pain is gone.

However, due to my former balloon compressions and numbness and itching following that, the neurosurgeon had to manipulate the trigeminal nerve so much that I still have terrible numbness and itching, much worse than before the MVD. (But no pain!). I wish so much that I had just had the MVD first, since in the neurosurgery books it is stated that the MVD is the "gold standard" procedure for TN. I would not have had this numbness and itching most likely AT ALL.

In the balloon compression they go in and damage the nerve so that it will quit having symptoms. That damage is evidently what caused the numbness and itching. In the MVD they get the offending vessel off of the nerve and clear out things in there so that hopefully there will be no more rubbing of veins or arteries against it.

In my case it was a vein lying against it, and it was so tightly against it that they just cut the vein at either end and stripped it out (said it was one I didn't have to have).

The reason that I got on this forum last night was to find out it anyone else had numbness and itching that was driving them crazy? The Neurontin controls it a lot, but one reason I had the MVD was so that I could discontinue Medicines! Yesterday, I decided to just quit taking it and see if the symptoms were all that much worse than when I am on the Neurontin. So far, it is worse, but I'm going to ride it out for a few days and see what happens. When the medication wore off after my MVD, my whole right side of my face and head, including my scalp was very numb. Half my lips, nose, teeth, tongue, one eye and right up the middle of my face is numb. Now it has been six months, and the only part that has let up is the bottom part of my chin and bottom lip. Even half of my nose and half of my tongue are numb, my eyes are numb and itch all the time, and sometimes I cannot sleep at night because just breathing causes my nose to itch terribly!

My recommendation to you is that whenever you decide to have a procedure, consider just having the MVD first. There are many people, however, who say that one of those "minor" procedures took care of their problem with no side effects. I was not one of these lucky ones. But there are many who have their TN come back. It is hard to tell how one given person will respond to a procedure. The neurosurgeons can only go on what we tell them--no way yet, it seems, for them to get this down to a science, since it is mostly subjective.

Another recommendation: Get rid of the stress in your life. I have been under terrible stress until the past year, and I think that is what caused my TN. I would love to help in a research project that studies the relationship of stress to TN.

My neurosurgeon was very good, but saw me only one time (two weeks) after my surgery. I told him about my numbness and itching, etc, but he told me when he left the room that I didn't need to come back to see him. I guess he can't do anything about it, and so what is the use of following up? Does anyone else have this infernal numbness and itching?