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Anyone in here with Anesthesia Dolorosa post MVD?

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Unread 01-26-2011, 05:19 PM   #41
Burntmarshmallow
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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.
PEACE
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Unread 01-27-2011, 10:08 AM   #42
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Originally Posted by Burntmarshmallow View Post
I know of at the least 3 people that have A.D.
I being one of them Mine came from an auto accident . Doodlebugs sadly hers came from failed surgery ... well surgeries more then one if i recall. and I believe Nikki was hit with A.D. from successfully brain surgery not positive but I think so.
You are not alone . I can not have any surgeries any more and I have a neuro stimulator implanted for my pain. as NO MEDS helpped with pain.and like you no doctors or neuros wants anything to do with me . Kinda stinks when they do their work and things turn out different they toss ya to the curb like trash then when ya try to make things better ..find a different doc and fill them in on your medical history... they act like you have cooties or something ( cant get to rude here) they are afraid to do any work on you. or in my case they cant because it will leave more permanent damage. but i have to truthfully and honestly say that getting my neuro stimulator has given back part of my life. It dose not take away all my pain but it takes the ugly edge off it. I have been reading the Neuro stimulator is being used to treat A.D. so maybe you could inquire about that as a possible option for you. And if i can help do not hesitate to private message me or post here. I will be more then glad to help with ANYTHING!!
I am so sorry you have to live with this horrible monster pain everyday. But you are not alone not in the least not one bit. I will see if i can round up the others I mentioned so they can reply also. but first my pain pal I need to give ya lots of
:group hug: :group hug:
Low pain wishes Kewl
PEACE
BMW
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.
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Unread 01-27-2011, 09:40 PM   #43
kristina1998
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new here......anyone know tricks for burning outter lips???? and anyone tried lyrica and what dose?? please help......scared and in pain
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Unread 01-28-2011, 10:47 AM   #44
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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!!
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Unread 04-14-2011, 02:13 PM   #45
frank18944
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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
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Unread 09-23-2011, 12:13 PM   #46
ZIZZY
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Originally Posted by Doodle bug7 View Post
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
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
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Unread 09-26-2011, 07:06 AM   #47
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Originally Posted by ZIZZY View Post
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
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Unread 05-03-2012, 10:02 AM   #48
Rae Lyn
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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.
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Unread 05-05-2012, 01:24 AM   #49
BethO2L
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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 Beth
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Unread 06-07-2012, 07:38 AM   #50
*Dena
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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.
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