I've lived with TN for 23 years now. I first had "episodes" when I was 20 and literally thought I was going to die. I was a young woman with a young child and no one knew what was wrong with me. It was horrible.

I've been offered the surgery, but I've put it off. I'm scared of the potential complications and meds do help me work through my days pretty well.

The source of my initial TN was a large cyst in my right maxiallary sinus cavity...pressing on the trigeminal (and other) nerves. I was pain free for almost 4 years, but the pain returned after the reconstructive sinus surgery which removed "the largest cyst" the doctor had ever seen. I had subsequent surgeries, but the pain never went away. It took 16 yrs. to be dx'ed with TN. Doctors just wanted to continue surgeries, pull teeth, think it was in my head because they were clueless, etc.

It was explained by my neuro that the initial cyst created TN. The surgery helped, but then scar tissue grew creating again TN...but to a lesser degree thankfully! The TN I have now is not as bad as it was with the cyst, but is increasing the last few years.

Just as a precaution, I would like to suggest that everyone have CT's of the sinus on the side of the TN to rule out cysts, masses, scar tissue there that might be pressing on the nerve...well, if the cause is not already known. Of course, my sinuses to this day affect my TN, but the cyst was what started this for me. I was pain free for about 4 years...and still the pain is not what it was then and is managed pretty well with milder meds. Prior to the surgery, nothing helped. Looking back, the surgery (to remove the cyst) probably saved my life, even though four years after the surgery I began dealing with a milder form of TN due to the massive work done to remove the cyst.

I wish everyone so well. It's so much to even try to manage at times.

Peace & love,

KD