Went to consult with NS today. He spoke to me about all the options I have. He told me he thinks I have TN and ATN. Says I am more complicated case because of the sinus stuff. After explaining all of the treatments, he said what he suggests is an MVD. Not the severing of the nerves the other doc. said. And he also did'nt turn down any of the other options. He said he has probably done 200 MVD's Only 3 patients had CSF leaks. A handful have had some nerve issues as a result. No lost patients. He is very up on our website and TNA. Seemed like a likeable guy. He said it's all up to me. He did say the meds would eventually stop working. Since I am not supposed to be under stress, this sure stinks. Everyone who does not have TN says they would never have brain surgery electively. Try everything else first. Pain management etc. I spoke to him about keyhole approach stuff too. He said it's very dangerous and he would never do it. Asked him about stimulators, he said he felt that they were overstimulating nerves and eventually they may be a problem too. My mind is on overlaod so I need to absorb and digest. At least he gave me some options. He did disagree with complete severing of the nerve. So I like him for that. He's going to consult with my Ent and Neurologist. Ball in my court. But I don't want to play this game, it's to physical. Barometer change and stress causing the dull ache in my temple, eye and stupid eyebrow twitch. Must get sleep. JEN

Glad I saw this before I zip outta here for a few days,and shut off all my junk
Oh I feel right along with you Jen on the weather deal surely not as cold as you but 80s and then 40s is still a kick in the face and head for all of us I believe.
You sound like you have found a pretty understanding good doc. I hope so that is a blessing by itself.
Well the try everything statement is pretty much what most have to do. I had to and know of many others and as you have been getting to know others yourself you know all the different options.
On the neuro stim I may be wrong and that be cool if I am but it is not approved by the gov yet for facial pain … because it is so experimental. I am not to have mine on all the time or when sleeping at night. As far as stimulating the nerve too much and it becoming a problem .?. ?? … I guess having one in for ummm July of 02 that’s almost 5 years right? I have been doing better then I have been in a long time dare I say that . And I can turn my stim off and on low and up to the top like a volume button on the remote control. It is set at certain range. I am just waiting until my battery runs low then I will have to take it out and put in new one. It is under my arm by bra line. I think in about 3 more years it will need to be done that is just a guess .
And on pain management I GOT THE MOST HELP FROM PAIN MANAGEMENT DOC!!!!!!!!!!!!!!!!!!!!!! NOT ANY NEURO DOC!!!!!!!!!! Sorry I screamed that but my pain doc is the first who cared and he never gave up on me threw all the meds. My pain doc is the one who suggested his idea of trying a neuro stim. He did this at the very last minute after he had said cutting nerve was my only thing. A pain doc went searching that far just for me when I was at the end of the road… So PLEASE do not wipe pain management out of your options. There was a neuro doc present and working with my pain doc during the operation. I am saying none of the neuro doc helped much at all for me except to throw new meds my way and test test test. Well I like this test with my neuro stim way better. Maybe I can get that answer for you about to much over stimulation after awhile becoming a problem also but for now and the last 4and half years it has been my biggest blessing besides my family and my friends.
Okay I know I just over loaded you Jen, forgive me on that. I will have to make you a cuppa via vitural cyber space and send a bunch of sunflowers.
hope you were able to sleep or at least make your mind ...still enough to relax. I know it is impossible sometimes .You are in my prayers Jen. take time for you and dont rush yourself with what you decide, YOU KNOW YOUR BODY THE BEST and you will figure out what feels best for you to do. many blessings and keep us posted. sending a blanket of comfort and good health for you Jen with this post.

one thing I know I wrote to you , that I forgot to mention . I got to try my Neuro stim for a week before it was implanted. I got to try it first and decide if I wanted it ,did it help , can I do things couldnt before I tryed this..... and a zillion other questions happen . I know one cant TRY an m.v.d. before they decide for real if they want one or TRY gamma knife.. or TRY severing a nerve ... I couldnt try out what it would be like with my nerves severed then decide I do not like it take the opperation back..
I know you will sort threw all of the conversations and input you have gotten.. I bet it is all flying non stop in your mind right now. make sure you eat and get sleep... you figure things out better when you sleep good. God and you will find the right next move to do. Many blessings.

wait one minute only a few cfs leaks you need to look around the us and find a dr who's done like 11 years worth of this mvd, lots can go wrong. sorry to jump but this is life changing stuff. i just don't want to see you end up with a dr. who can't find the nerve. i saw this one dr. he said yeah i've had a few pt i couldn't find the offending blood veassle. so i read this book and it states that if a dr cant'd find the blood vessle it's brecause he/she is not trained enough to do the surg (mvd) meaning the blood vessles are really there. the book was striking back by petter jenneta. i got it from the tna association thets trigeminal neuralgia association. i have been doing reshearch on this hole mvd thing for about 2 years. i thought about thre gamma knife but dr white said it only works in like 20% of the cases. sorry to be so long. shelly

Hey guys, I'm new here. Just found this tonight. In short, I've had severe, unrelenting pain X 3.5 yrs. Tried: Botox, accupuncture, nerve blocks, and last Sept 2006 I had the "keyhole" approach surgery. Didn't work. But it didn't harm my facial movement. This is the first place I've heard my "endoscopic neurectomy of the 5th trigeminal nerve" called the keyhole approach. Has anybody else had this? Thanks.

If you look at skull base institute at cedars sinai it explains it all. Not too many docs doin it yet only a few. Jen

Hey, just an insert, although Im new, I have had Gamma Knife and it didnt work!!! Have been sick with TN for a year and have been trying to decide what to do for the pain.