no i havent...i didn't know about it.
i guess im waiting to see how this pre surgery stuff goes.
ill bring it up though with the next dr i see.

I'm a new user. Trigeminal Neuropathic pain X 4 yrs. I'm sending you a web link. The latest info straight from doctors who know and understand our REAL medical diagnosis. Click here: http://www.texastna.org/NC_Review_fo...ort_Groups.pdf
You probably know more than all your doctors - most important: BE SURE YOU ASK THEM WHAT THEY WILL DO FOR YOU IF THE PROCEDURE FAILS.
Also, appoint somebody RIGHT NOW to be an advocate for you. please listen to me - I've made so many mistakes over the past 4 years. I know it sounds like I'm preaching, but I believe you, I believe your pain. Keep a daily journal, esp. meds and pain level. I'll check on you later. God bless. Janet

Hi Janet and welcome! Thanks for the tips and it's great to see a new face here.

I hope everyone here knows they're not alone.

My TN has been acting up in a bizarre way, I normally have these unholy spasms and electric-shock type of pains on my right side. But now, it's actually gotten to where it hurts to touch the right side of my forehead. It kind of makes my nightly relaxing girl time a PITA (pain in the ***). I like to end my day with this self heating face mask, ohhh, it feels so nice. But now, I shock the crap out of myself when I apply it because I have to touch that side of my face.

To heck with that vile nerve, I tell ya!

My heart goes out to you. I had trigeminal neuralgia for 5 years before I opted for a MVD. I inew at the time I was atypical (because I had constant burning pain with intermittent electric shocks), no meds worked for me. I was extremely depressed. So long as you have no other significant health probs (autoimmune, clotting) your surgery will be a success. Mine was not because it turned out I had a clotting disorder sending clots to the jaw bone and the bone cells pressed on the nerve causing pain. nancydstephens@yahoo.com. e-mail me if you feel you need details.

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

If I do this wrong, I'm sorry - first time responding to a thread here, and it looks a bit odd I just found this site and read your post and went, "There it is! Someone like me!" My husband is a full-time student and works thirty hours per week, and we have three kids - he ain't the one holding the homestead together, you know? But lately, well, he's having to try. I'm exhausted. I'm angry at all I feel has been taken from me so suddenly - and I'm overwhelmed by anything that isn't just getting through the pain. I'm taking Tegretol and Neurontin and I haven't had a pain-free day in over a month - 38 days, to be precise. I can't wrestle with my kiddos or go ride a sled with them, I can't eat and I don't WANT to drink but my guy insists. I feel robbed, I feel angry, and I feel too overwhelmed to do anything about it. And right now, I feel lightening on the left side of my face that makes me want to scream. Who decided we should have this, and what the HECK did we do to make them mad?!