I just wanted to comment on some of the posts I read and to say that I sure do share the pain and frustration of living with trigeminal neuralgia. I was diagnosed 4 years ago and things got progressively worse. Like so many of you out there I have a very tough time tolerating medications. Then--combine that with doctors that can't seem to think outside the box. Well---to get good pain management should not have to be a fight. There is too much great going on with medications and treatments for doctors to just wash their hands of patients. I also am tired of doctors worrying about addiction. With true pain it is very difficult to get addicted. Its far worse for the body to be constantly bombarded by untreated pain. (I know a bit about meds and addiction---I was a nurse for 26 years) I say---treat the pain and then worry about the other things. I agree with those that have been kicked to the curb by their surgeons or doctors. Isn't it sad when a doctor looses interest---of course, I guess we all thought they decided to be doctors to help people---guess their egos get the best of them. They don't want to be reminded of the ones that don't have the expected outcome. Well, then I say---they shouldn't be doctors. All patients are different---and not everyone will have the expected outcome. I had the MVD surgery and am sorry I did. My pain is way worse. Relentless! I really sympathize with all of you that share a similar situation. Pain is truly a life altering experience. It has been 5 months since my surgery and I just keep being told I will get better. My facial numbness is still there and hasn't changed one bit. I am being told by the end of 6 months it should be gone. Anyone else with a similar situation---and did your numbness go away? I am glad that I found this forum----it is somewhat comforting to not feel like you are the only one going through something like this. So many people with such horrible pain---and some with no good answers to treat it. SAD
Has anyone had burning pain after their surgery that wasn't there before the surgery? How about horrible eye pain? Thanks:

I am so sorry for your pain. I understand, I have the same pain. Mine was caused by my gamma knife surgery last June. I had the pain prior to my mvd surgery ( 5 weeks ago ) and the pain is worse since the mvd. The mvd did take all of my horrible attacks away. Your pain sounds like anasthia dolorosa or ad. I do want to say that I am sorry for the docs that are not helping you. My son is a surgeon and he always says the the bad docs make it difficult for him. When he finds a patient like that, he stays with them in the first visit to confince them that he is not like the rest. Ask your surgeon if he has heard of ad. If he has not....then go to a different doc. Also, buy the book Stricking Back written by the Trigeminal Neuralgia Association. You can go to there site and learn a lot from them. You can get the book from them or from Amazon. A member of this site is a huge help with ad. Her blog name is Burntmarshmellow. She is very kind and will help you so much with what you are going through. Hang in there. Here is hope, believe me. I went to my first pain management doc today, and already I am seeing some results. Don't give up on the docs. You will find a good one that will help you.The association can also help you find a good one in the state where you live. Take care of yourself
Cheryl

Calewark- great info to share and t.y. for those nice words of me.right back at you


linnie Hi and welcome to NeuroTalks T.N. forum
I am sorry you are dealing with this pain all day and night and sorry you have to be for that reason.
I have a.d. mine is from an accident . a trailer truck hit me from behind while i was stopped behind other cars and school xing zone. My lower jaw broke on each side I have plates and screws on each side of lower jaw and right lower side the nerve snapped.. a.d. is what they told me.
I got the most help from my pain management doctor . I have a P.E.N.S implanted and it zaps my nerve mixing the signal before it reaches my brain .
none of the meds worked even a morphine i.v. drip . It is a last option only and not yet approved by gov. as treatment for face pain yet and that my dear t.n. sister is SAD!!! to think of all who could find relief from this yet they are stuck on meds and the dammage meds do to inside... crazy!!!!!! Anyways if I can help you with anything let me know you can click on my screen name here and send me a message or just post here we will help, listen support and try to make ya laugh now and then. Just do not give up !! you are NOT alone. The t.n.a. site has a list of doc state by state if you need link let me know.
I am keeping you in my positive thoughts for finding some good wise doctors that will help you get the bad pain under control.
Low pain and prayers to you Linnie. Stay in touch and let us know how you are doing.
PEACE
BMW... BurntMarshmalloW