Yes, I too have AN, exactly as you describe for the same reasons. My Neurosurgeon was planning to install a Pain Stimulator and I need to call him and set it up, like yesterday. Been up with no sleep for the past 48 hours. I had 2 rounds of Gamma Knife and 2 rounds of MVD. So, now I too have Anesthesia Delorosa. The pain is caused by the TN nerve that has been 'over-worked' is the explanation given to me. In other words, 'You had too much work done" I trust my Neurosurgeon, but he has yet to call me to install one which is not a picnic. I need to reach him today to find out if his new method has worked on his 2 other patients before I was used as a ginna pig. I feel like I am now being ignored because there is no more money to be made by this procedure. I added up the cost of everything done so far and it tops at 1/2 Million bucks! Not sure, but I certainly will address the subject. I've suffered with TN for about 8 years and the way the he explained it is: imagine losing a leg. Your brain still thinks the limb is still there and you still receive and transmit pain signals to that limb. That is how AN was explained to me. I have hot sharp knife stabs into my ear, eye, and face and ants running along my face, lips and eyes most of the day. I have chewed my teeth down to knobs because TN also granted me with TMJ. I rarely talk to people, only from a distance because of my ugly teeth. My husband has been a trooper thru it all, I'd be dead otherwise. Even when I threw every wine glass into the fireplace out of the anger & frustration from the constant unrelenting HOT pain I've endured. I'm at the edge again this morning having not slept in the past 48 hours from the pain. I'm sorry for all of you, and I'm sorry that I also suffer with you all. The pain is just the worst ever, I cannot even suck on butterscotch candies as they are the best tasting morsels in the world! Blessed be to everyone this morning. somehow, someway with GOD'S guidance, I will make a decision very soon.

Hi Kewlbutterfly,
I am coming out out of the closet to let you know that I am living with A.D.
I take a multitude of pills each day but I am proud to say that I am off the narcotics such as methodone and oxycontin.
After the nightmare of severe T.N., I would choose the pain of A.D. over T.N.
any day. Those lightening like bolts of T.N. reduced me to a skinny, neurotic,
hopeless shell of a person who couldn't or wouldn't speak or eat. I had an MVD in Kansas city that totally failed . I had three balloon compressions, where they put a needle through my cheek to the base of the skull in hopes they can
destroy the trigeminal nerve. Those failed, so we were headed to Mayo clinic in Minnesota. They said that I had the worst case of T.N. they ever saw. I was scheduled for surgery where they partially cut the trigeminal nerve. This threw me into so much pain that they put me in the pain unit. Two days later they took me back into surgery where the last option played it's hand. They severed the Trigeminal nerve. I was in Mayo for three weeks where the pain of A.D. had just begun. No one would give me a straight answer about this.
You know I spent four years not knowing what this pain was called (A.D). I hated anything and everything about T.N. and never wanted to hear about it, read about it or see anything about it. These few years past and one day I went to the computer and typed in "T-r-i-g-e-m-i-n-a-l n-e-u-r-a-l-g-i-a
I then somehow got sent to Neuro Talk and and found other people dealing with T.N. and I was NOT ALONE. I felt like I was ready to heal. The dreaded complication was called Anesthesia Delorosa and there was people out there
( although not many ) living with it.
I know I have come a long way. Each month, my husband drives me to K.C. to see my psychologist whose practice is for people living with chronic pain.
Take care and let me know how things are going OK? The support of Neuro Talk will be with you every step (even baby steps) of the way.
Truely a believer, Doodle bug7

Hello, Everyone,
I found this thread when I googled Anesthesia Dolorosa.
My husband has had AD for the last nine years. He has tried gamma knife and had no luck. Otherwise, after trying various drugs and drug combinations he used such high doses of Neurontin that he was asleep or on stimulants all of the time. (Much bad cardiological fall out from that. Don't try it.) And he was still in pain a lot.
At any rate, in July my brother-in-law sent me this article from the New Yorker about sensor syndromes and mirror therapy. At the end of it, this docotor, V.S. Ramachandran suggests a kind of mirror therapy for a woman who was suffering from numbness in her scalp due to shingles. We realized that the same therapy might work for AD, as long as it was done on the face. It involves using a non-reversed mirror and having someone else touch your face while you are watching them do it for 10-15 minutes several times a day. I know this sounds wacky, but we figured, "what the heck?"
Even wackier is that it seems to have worked. My husband was pain free within 2-3 days and Neurontin-free within five weeks. We are hoping this might help others and want to spread the word. to anyone you know who is living with AD or treating it who might be open to it. Let us know if it works for you.
We still can't believe it!
Thanks and Blessings.

We have a blog that describes what we did for his face.

Hello Taylorschott, I have a question. Did you say that your husband had a Gammaknife after he had A.D.?
My neurosurgeon never made any contact with me after the surgery where they severed the trigeminal nerve. He dismissed me from Mayo clinic after three weeks and that is the last time I had contact with him. I was never
informed about A.D.possibilities. When I started having pain and burning,
my husband would try to get some kind of answer, calling his office. I guess
what happens after the surgery, they don't want to hear it! That was five yrs. ago and the A.D. pain is relentless, everyday, every hour, every minute, every second. What a nightmare! Truely a believer, Doodle bug7

hi doodlebug. we had a similar experience with my husband's neurosurgeon, who was horrible afterwards. the gamma knife was for the sphenopalentine nerve bundle and we found it through a pain center. as far as we know, he was the only person ever to have it for AD, at least as of last January. And it did no good whatsoever. The others who had had it successfully had atypical facial pain. if you read the Gawande article, though it makes sense as to why it would not work for AD, assuming that AD is a sensor syndrome as he calls it. Not sure if that answers your question...

How can find anyone who had Tn from shingles. And then had gamma knife surgery and developed Ad. Such a bummer...going to mass general to try help.my prayers to you, zizzy

taylorschott,

I hope you're still on this forum because I'm responding to a post you wrote in 2008.

I have anesthesia dolorosa on the right side of my face as a result of the surgeon permanently damaging my trigeminal nerve during microvascular decompression surgery. No meds help with the pain. I want to try the non-reversing mirror that you mentioned.

My questions are - which side of the face does someone need to touch? The normal feeling side or the painful side? Also, can I touch my own face or does it need to be another person for this therapy to work?

Has it continued to work since the first success in 2008??

Desparate for help,
Frank

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