My ending comment on above post Does NOT mean I think MVD are bad they DO HELP MANY others and are very good if they can see the offending blood vessels and the compressions on the nerve. I just have seen plenty have to have 2 or more MVD then end up with ad. so I have mixed views . we are all different and what helps one may not help the next. thats why we all have to share .. keep the hope alive.:grouphug:
PEACE
BMW

Neuro Pain Stimulator
 

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.

help
 

new here......anyone know tricks for burning outter lips???? and anyone tried lyrica and what dose?? please help......scared and in pain

Hi- new here, anyone know of a good support forum? alson any help for buring lips(outer) to get some relief? anyone tried lyrica?? thanks so much....very worried!!

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

ad
 

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

My heart goes out to you and I hope you find some relief. I think all you can do is post your experience and see if anyone responds. Also, you can check threads under "post herpetic neuralgia" to see if anyone posts there as well as any post with "shingles" in the title. And, you might want to start a thread here titled as such so it doesn't get lost in another thread.

Take care, ee

I have ad after decompression surgery. Has anyone figured out how to explain it to family. They keep comparing to a pain they have had in the past, and think I can just forget it and go one.. Any helpful suggestions I am at the end of my rope if it was not for the fear of hell I would have pulled the trigger last night.:hissyfit:

AD
 

Hey Everyone,

I had a failed MVD where he cut the nerve because he could not find any interaction between a nerve and a blood vessel. That increased the pain so drastically that the next month we did an RF (radiofrequency rhizodomy) which cause more pain but kind of a more controllable pain.

Over the years my pain mgmt MD and I have discussed if this is more AD than TN but his attitude was nerve pain is nerve pain and we need to treat it. In the end I ended up with a PNS system as well,,a life saver. The nerve can only interpret one sensation at a time so instead of pain I now have a mild tingling which is far more preferable.

It may be too difficult for you but there is a major hosp in Colorado that does these as well. The hard part is not the unit the hard part is getting the right programming done. However within the next few years these will be FDA approved and perhaps at that point it may become more of a viable option for you.

What I will say is that while low dose methadone is wonderful for nerve pain, I found that adding more narcotic made it drastically worse. Please be careful and really monitor if you are getting any relief from the oxicontin. (Please note I am not against using opiates in the treatment of TN) I found the worse my pain got the worse the added opiates made it. So it was like doubled.
It may be different for you,,just an FYI.

I agree with a previous post, get a good MD (at this point I would suggest a pain mgmt MD) and make sure they are listening to your concerns,, if not find another one. Your MD along with your meds is an important part of the the partnership of tools you need to keep going.

If you can hang on,,I think you may be looking at a PNS for your long term answer. Just know that there are many of us out there that have faced what you are facing and we get it,,,and we are always here for you.

Maybe BM knows the facility in Colorado and can pass that along to you,,it may be worth just going (I know it's hard to do, I live near St.louis and I have to go to Cleveland) to get an opinion about whether or not you'd be a candidate for it...something to think about..
Good Luck and keep coming back,,we'll do anything we can to help :grouphug: Beth

Trigeminal Neuropathic Pain
 

Greetings, all. Anyone have this? My left upper lip feels like it's being gripped, twisted, and pulled in a pliers. Sometimes it feels like duct tape was just ripped off it or bees are stinging it. If I brush my lip I get electrical sensations up to the eye.

The V2 branch of the trigeminal nerve was damaged (apparently demyelinated, because it is now like a live wire without insulation) when I slipped on driveway ice and landed on my left ear in 2009. Since that moment it has hurt to talk or smile. One tooth immediately turned gray and has since required a root canal. A molar in the affected area crumbled after the nerve died, and needed extracting. (Am signed on for an implant next week.) Flossing is painful.

Neurologists, dentists, GPs, and the director of the Facial Paralysis Institute in Beverly Hills all told me to take a wait-and-see approach, as the nerve would almost surely regenerate, albeit slowly. Today it is much worse.

Anyhow, shortly after my incident my employer of nine years ditched me in a corporate downsizing from my position in marketing communications in the PR department of an international not-for-profit. Then they tricked me out of my COBRA, so I'm without coverage to this day.

For the next 20 months I applied for every opening out there, but no one will hire a woman of 55 who is no longer comfortable in her own skin. I've filed for SS Disability, but help is not at all assured--how convince a judge of this invisible pain?

The financial challenge on top of the inescapable torment has me struggling to find motivation to go on. I avoid people because I can't express myself without intensifying the pain. My boyfriend of six years recently downgraded me to "just friends"; I can't much blame him: the sick must not be allowed to infect the healthy, so my quarantine is for the good of all.

The temptation is to simply trust Nature, go back into the bardo, and get a new body. Life is not meant to be so thoroughly infused with suffering. It hurts to smile, so the happier I am, the more miserable. Try to remain positive all you like--that feels like just faking it. If life is no longer good, then it's bad. Keeping it real, if there's no fix for this, there's only one way out.

I've tried but can't tolerate Neurontin, Tegretol, Lyrica, and tri-phasic antidepressants. Vicodin doesn't touch the pain. Sunday I thought I'd keep popping them until I reached the threshold, but it never arrived; next morning when I got in the shower the water on my face felt like a scalding iron. Chalk up yet another failed strategy ...

... because I've tried nerve block, Botox injections, acupuncture, upper cervical chiropractic, a TENS unit, magnets, capsaicin cream. Plus a session with a medical intuitive, a Cherokee healer in Washington State who told me to avoid liquor, juice fresh lemons and limes over everything, inhale peppermint oil, walk outside slowly while repeating to myself "I never fell; it never happened!" in order to reprogram the pain centers of my brain. She asked "What are you GETTING out of this? Who is treating you SPECIAL because of your condition?" (I wish!)

Last year I flew to Long Island and saw an eminent neurologist. He looked at the MRI and said I needed an MVD. By luck, while I was pricing the same procedure if done in India, I stumbled on Frank Vertosick's Why We Hurt: A Brief History of Pain. Vertosick studied under Dr. Jannetta, pioneer of MVD. One of the book's anecdotes features a woman with trigeminal neuropathic pain (a.k.a. anesthesia dolorosa), chronic pain like I have. She's waking up from MVD and starts in bitching because the pain is still there. MVD does not work on trigeminal neuropathic pain. The lesson here is, never ask a barber if you need a haircut. His surgeon's fee alone was going to be $102,000.

Last week I cancelled a consultation with Mayfield Clinic in Cincinnati. I was set to pre-pay for a Percutaneous Stereotactic Rhizotomy the day following the consult so I would only have to make one trip. Then I watched some DVDs from the TNA conference. One had all the docs up front nodding like bobbleheads in agreement that with trigeminal neuropathic pain, further destruction of the nerve does not help, and may make it worse. Yet everyone's poised to take my scarce dollars to do just that.

Trigeminal nerve conditions are associated with high blood pressure, cold sores, shingles, and stroke, according to a presenter at the 2010 TNA Conference. I've had all but the latter, and now I frequently wake up with my left arm tingling ominously. More fun to come.

Trigeminal nerve conditions are disproportionately frequented on older women. Menopause deprives you of 90% of your hormones. Progesterone protects the nervous system; since 2007 some ERs have been administering progesterone by injection for head trauma patients. My accident occurred after menopause and before I had figured out bio-identical hormone replacement therapy. Bad timing. Fatal error.

I am not religious; I am a Nietzschean. So G. K. Chesterton's "Ecclesiastes" does not convince as it otherwise might:

There is one sin: to call a green leaf gray,
Whereat the sun in Heaven shuddereth.
There is one blasphemy: for death to pray,
For God alone knoweth the praise of death. [& etc.]

Does any of this resonate with you? This is my first post here, and to know that others are going through the same thing is not particularly comforting. Support groups with everyone sharing their sad story mostly make me ... sad. The only thing that works at all is to spend time with happy, healthy people who still find something in me to love despite my having been singled out for a terrible fate. I can riff off their joie de vivre. But even then it's vicarious joy and so I'm wondering: Do they love me for what I was BEFORE?--a hale companion? If so, their patience must at some point run out. And then the quandary over what to do about this will be a no-brainer.

AD
 

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...:)

Thanks for the tips
 

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

6 PNS units
 

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

need support
 

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 **

No help for Anes Dolor - very worried
 

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. :Wave-Hello:

After "successful" MVD - no more pain, then THIS!
 

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.

I have AD from a botched root canal where the dentist overfilled my tooth and wrapped the filling (that had formaldehyde as the active ingredient) around my nerve. They aren't supposed to use that crap so they lied to me right past my chance to get it out before it became what it is.

I hear way too many stories about people who come out worse from MVD. PLEASE - if your pain came from a dental procedure please do not let a doctor do an MVD on you. You WILL get worse.

Not sure if this is the case with anyone in this thread. I saw it countless number of times on another site where people don't know the difference between dental injuries and the TN disease/syndrome. I had a neurosurgeon say that he could do one on me and when I asked him what a blood vessel pressing on my nerve in my brain had to do with a chemically burned nerve in my jaw, he changed the subject. I almost plowed him over getting out of his office. BEWARE.

I think that's what happened to me I was having a root canal and the song of Macy Gray came on this was about 11 years ago the dentist started dancing. I was laying there thinking what is going on. That started my nighmare. I now have anesthesia dolorosa also due to a bad surgery. That brunt my nerves beyond repair Lost my cornea that night also because they didn't patch my eye

Sent from my HTC One using Tapatalk

Pns
 

My wife was recently diagnosed with AD. The Neurologist says there is nothing else that can be tried but medications which don't seem to be working. I've read a lot about PNS and it seems to have helped a lot of people. Does anyone on this thread have any experience with this? Who are the best candidates? Side effects?

Thanks.

Anesthesia dolorosa post mvd
 

Yes I had mvd in 2013 and have had Anesthesia Dolorosa ever since. I have tried the following WITHOUT ANY IMPROVEMENT!
Acupuncture
Deep brain stimulation
Cannabis under MD specializing in
Cannabis therapy
Ketamine IVs
Sphenopalatine ganglion blocks by MD and also self-administered
I have been taking Gabapentin 2400 mg a day but still have alot of pain. l do not want to take opiods.