First off don't feel like you're alone, there are a lot of us out there who have developed AD because of procedures trying to help the TN.

I had a failed MVD and it increased the pain so dramatically the following month I had an RF. By then we found out that the MD had partially severed the TN nerve because he could not find any interaction with a blood vessel. The RF made my face feel numb but it was a deep numbness like putting your hand in a bucket of ice water and waiting for it to go numb..a painful numbness,, but it was better than the TN so I persevered.

I later learned that it was really AD but the treatment was the same as for the TN so I just moved on. I have a neurostimulator now as well,,the pain became uncontrollable after about a decade. It has changed my life,,well I have my life back.

Although there are no places where you are that are doing them yet (it's still experimental for TN) there is someplace in Colorado (BM probably knows where) I went to the Cleveland Clinic. The procedure will probably be approved in the next year or so, there are some great Doc's out there really fighting to get it approved.

If you have the opportunity to get on done PLEASE read the thread on PNS systems and do your homework,,don't be a guinea pig just because it become available!! There's a lot more to it that in looks.

I know that going to an out of state hospital can be costly,,it was for us but the balance was what was my health worth?? I borrowed airline miles and hotel points from family and friends and we went into (more) debt but it was worth every dime.

Alternative therapies can be the same because normally they will not be covered by medical insurance, where if you go to the right hospital insurance will usually approve a PNS system,,I got medicare to cover mine and they don't cover anything!!

So, don't loose hope,,there are a lot of us out there living with AD and managing..you are not alone. Are you taking enough vitamin B complex, vit D and something that has enough selenium?? They all help as does getting rid of aspartame, MSG, caffeine, sugars (if you can!!) and avoiding all tooth whitening toothpastes...they can all increase the pain...

Hope you can find the right MD, alternative or regular that can help you find someone or somewhere that can help...
Feel free to contact me if you would like more info on the PNS system and how it might help you...

Hey, I appreciate the tips. As a direct result, I've vowed to cut out caffeine and take those Vits. I've also read the neurostimulator thread.

I must say at the PNS thread I found it tough going to glean useful information from all the hugs-n-fluff I can do without. (One instance where a poster pleads with the other posters not to call with their sympathy, as that only makes it worse ... heh, now, THAT I can relate to.) Officiousness, mothering, and a general descent into "misery loves company" on these threads all but chokes out the matter of value. I propose that cozying up and coddling makes one LESS able to deal with "the dreaded anesthesia dolorosa." Hugs and angels and prayer -- and especially dancing, kissing emoticons -- only distract from the real objective: an end to the pain.

Anyhow, I waded through the goo there till I found my answer: neurostimulation's not for me. When you have to try so hard to convince yourself it's working, and bend to peer pressure and confess it's working, and bow to the neurosurgeon's ego and testify it's working ... it ain't working. It's, like, Gaslight meets the Inquisition.

But posts that share detailed and accurate descriptions of procedures, direct you to online resources, and name the medical institutions and professionals who might make a difference -- THOSE posts I'm all over.

Anyhow, thanks for the hard information. I appreciate it!

I agree the PNS thread has many support type of posts this is a support forum.. BUT PLEASE feel free to post your questions about PNS. We will be more then happy to answer them ..and possible save you or others the wading and sifting threw the long thread. .by the way I myself do not believe there is a cure or way to totally end this pain YET . also what helps reduce pain for one person may not work for the next.
I MYSELF DO NOT TRY TO PUT PRESSURE ON ANY FELLOW POSTER TO HAVE THEM CONFESS . I ALSO DO NOT FORCE ANYONE TO POST and I have plenty of contacts that do not post in this forum. I chose not to post doc names as it can look like I favor one doc or am promoting a doc or hosp and I AM NOT. so by others just asking questions they have ..be it what doc or state... you will get a reply and save the time of reading threw the PNS thread.
avoiding the hand holding and hugs here ... sending peace
BMW

Dear Dena,

As I lay here plugged into a wall and charging my battery/control unit,,I read your posting and i do see some validity to it.....but as BM says this is a support group and each of us needs different support....

Do I Favor a certain MD or clinic...Damn Straight,,I've talked to too ,many people who had the same procedure done and because the Md didn't really have a grasp on an experimental procedure and because the support staff was not trained properly you now have a TN patient that has hardware that should be helping rhe pain and all they have is hardware.....

It sounds like you have been through the mill with this,,,haven't we all !?!?! That doesn't mean we act like life is over...I think it's the opposite...I think we take every day,,good or bad,, with gratitude because we fought hard enough to be here...we've all looked at that closet full of pills and though what if?? but we're still here.....I'm not a cheering section,,just calls em' like I sees em'.....

It sounds like you have too much going on to cover here,, I qualified for disability with my TN but ,,,by the grace of god (sorry) the judges husband was a neurosurgeon......go figure the luck,, so she understood it,, saw that I had been very aggressive in treating it and saw that it continued to get worse,,,that was about a decade ago,,,,,,,

If you'd like to chat with someone who may not agree with everything you believe but is well versed in what you believe you might want to give me a call or private message me.....
My TN/AD is viral based and I have proof,,so many of the regular paths didn't work for me,, I'm 54 and know what it's like to feel like life is leaving me behind.....these were supposed t be my good years damn it!!!

I have been in some of the placed you have been and are,,,,maybe I can help,,if you're open to it...

Either way hang in there,,, we really do care here so the best way we ca show that it by hugs,,,I will refrain,,,,private message me and maybe we can help and you won't even have to see an Indian shaman,,,,,,Beth

I've had 6 PNS units over the last eight years and 1 SCS. I now have a intrathecal pain pump and I am down to a 7 on the pain scales most days. I have my life back and wish I had never gone through the other units. It's nice not being plugged in to a wall outlet anymore and although one unit is still implanted and "dead" it will not be removed. I just gave my battery charger pack to someone across the country who needs it. I'd be happy to answer any questions also. I've had 69 surgeries so I'm pretty knowledgeable lol

Univ of CO hospital no longer does these and the doc in the Springs quit so we are all trying to find docs in other states

This could be me. Please get in touch with me. I feel crazy at this point, all the doctor did was cover it up, and tell me to wait. It is a living hell that is not getting better. I need to connect with other people who have what I have. if you look at me you think I'm fine, when it is indescribable what I am feeling. And it never goes aWAY!!!!! ** Thank you, Linda **

teacher61

I am new to group. Nov 2014 Have Anes Dolor after MVD for TN. No success with blocks, constant cold/burning/problems eating. No doctor has answer. Any suggestions.
teacher 61

Welcome teacher61.

I have had two different nerve blocks - neither one helps. Sometimes I feel like gasoline has been poured on the side of my face, and lit with a match! I've even used my dog's skin cream for hot spots. The worst is the coldness when I can barely feel my lips and tongue. Had to have the heimleich maneuver several times from choking - cannot feel myself eat. I'm becoming a "not so nice" person. All I want to do is try to take something to make myself sleep, and stay away from everyone. I no longer join in conversations, or volunteer to help with anything. It is so hard to explain this situation to people because there isn't anything to "see". Also, my eye has really been giving me problems. After the surgery for TN, a nerve was accidentally moved, and I had have botox injections into my eye to bring it up into place. It looks normal, but I see normal many times. I am a senior citizen, raising a teenager all by myself on Social Security. I make too much money, (ha) to get additional financial assistance. This is the first time I've really been able to get out my feelings - sorry if I sound sorry for myself. Been living with this for three years and only getting worse.