Originally Posted by leejcaroll

My Tn started in 77. I have V1, V2 (L). The spontaneous pains are now gone, for 10 years, but the eye movement and usage pain remains with light sensitvty, soreness, etc.
My docs first said, and then some after the Dx and surgical proof, that I needed a shrink (my father did too but that's another story.)
I have a birth defect that resulted in dozens of extra blood vesseks in my brain. Some vessels were wrapped around a part of the brain. That caused the pain. Unfortunately, after the first surgery, a decompression, not an MVD, which worked, including stopping the eye pain, the pain returned 3 months later. (The vessels had apparently grown back.)
I have had many surgeries including an MVD done by Peter Jannetta, My face was paralyzed as a result of that surgery. I am currently with an experimental brain implant.
Please exhaust your medical options before turning to surgery. If you do decide to go that route please read everything you can, and talk to a lot of people about their experiences with the various procedures, before making any decisions.
(The first chapter of my book is online. It gives a good description of the onset and what happened after in trying to get a dx. It won;t let me put the link but if you would like you can find the first chapter excerpted at Amazon or Xlibris, Google A PAINED LIFE, a chronic pain journey and you will come up with a click for the book.)

Many of the people I have talked with over the years do not have what is considered the "typical" symptoms. At one meeting I attended a few of the docs talked about changing the definition so that it was a continuum from trigeminal neuralgia to atypical facial pain to anaesthesia dolorosa (phantom pain - secondary to surgery. I actually have all 3, typical tic, atypical and the AD from other surgical intervention.)
leej

Originally Posted by jryanlarson

Hey,
I have been diagnosed with atypical trigeminal neuralgia. I am 34 now and have had this condition for 17 years. The majority of my pain is in and around my left eye. There is even visible evidence of this because of the dark circles surrounding the left eye. My left eye is extremely sensitive to wind, light and lack of sleep. The pain is never ending. Sometimes the pain is stabbing. Sometimes the pain is burning. I am currently taking nothing for the pain. I am sick and tired of medications and have decided to "gut it out." I have not taken a medication that actually takes the pain away. I have surgery scheduled with Dr. JHO within the next few months. Wish me luck. They actually did find a compressed blood vessel that is probably causing the pain. I will keep you posted to tell you if the surgery is sucessful or not.

Originally Posted by Burntmarshmallow

((((((Shelley))))))
and you too((((( EE ))))))
I feel like poo poo at the moment and dont have much to say but wanted ya all to know I care and am reading the forums.
Are the meds helping with the pain Shelley??
EE how are things with you??
PEACE
BMW

Originally Posted by EE03

Shelley, we always hate to welcome people to this club, but there are a lot of caring people here willing to listen and share what they can, when they can. At least you are lucky enough to know what caused your TN. In my case, I don't have any idea and neither do the doctors. Are you treating with meds and are you seeing a neurologist? EE