Anyone in here with Anesthesia Dolorosa post MVD?
 

Hey all,

Long time since I last posted in here but, I finally got the official diagnosis. Anesthesia Dolorosa.

I don't know if you all remember that I had an MVD procedure done in Aug of 2006 and it had failed leaving me in more pain. My Neurologist now is Neuropathic Pain Management Specialist, he told me that this was caused from my Neurosurgeon damaging my trigeminal nerve during the MVD procedure. Now, I am in constant pain like when you go to the dentist and the numbing stuff starts to wear off but this never does, it feels like pins and needles yet it never ends. My Neurosurgeon wanted nothing to do with me after the surgery and now I know why! He kept telling me to "give it more time to heal". The bad thing is I have no "physical" way to prove it because you can't physically see the damage. (It's not like he cut the wrong arm off, it is worse no one can see my pain) Anyways, I am posting to see if there are any other people out there that have had the same thing happen to them.

Anyone else out there that is suffering from Anesthesia Dolorosa after a MVD procedure? I would love to know that I am not alone!!!:Sob:

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 sucessfull 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 diffrent they toss ya to the curb like trash then when ya try to make things better ..find a diffrent 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 permante dammage.:( but i have to truthfully and honestly say that geting 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 wil be more then glad to help with ANYTHING!! :hug:
I am so sorry you have to live with this horrible monster pain eveyrday. 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 :hug: :hug: :hug: :hug: :hug:
:grouphug: :grouphug:
Low pain wishes Kewl
PEACE
BMW

Hi Kewlbutterfly, Love the name:)
Take my hand, you are no longer alone:hug:

BMW had it half right, I had the MVD and 2 gamma knives, (I have bilateral TN- so gamma on each side) ALL the surgeries failed and left me with AD too.
I have the same sensations you do, but the other thing I have is this sensation that hundreds of bees are stinging me from the upper lip to the bottom eye lid. Like you say, it is a 24/7 unrelenting pain.

I am sorry your neurosurgeon didn't care enough to help you through this. It is a risk factor, I was told before the surgery. But, well -when you are in enough pain, you will try just about anything. I thought the slim chance of getting AD was worth the risk. Even knowing what I do now, and suffering with the AD on top of the TN, I would still do it all over again..... I HAD to try!

So many have found relief with the MVD , I am truly sorry you were not among them. I am glad you have found a neurologist who is helping you.
A good supportive doctor is key. I am so sorry for your pain, but again, know that you are not alone:hug: Anything I can do to help, just let me know~Nikki

Nikiki~
Thanks about the name. It is really a good feeling to know that you are not the only one out there with this horrible pain.:grouphug: Although, I would never wish it on anyone, not even my worst enemy.:( I know that this happened for a reason but I know I would not have the surgery if I had known what my outcome would have been. Yet, if I did not know the outcome and being in the state of mind that I was at before the MVD procedure especially if there was a chance for everything to be back to normal, I would have done it because I was so desperate to stop the pain. I am sorry to hear that you suffer from this as well.

Is there anything that you have found to help stop the relenting pain? My Neurologist has me on Dilantin 300mg, Nortriptyline 200mg, OxyContin 10mg every 12 hours, Zoloft 100mg and Ambien 10mg to help me sleep. As of Yesterday he changed my OxyContin, due to there no longer a generic being made, to Methadone 5-10mg a day. I am really having a rough day! I think it is from me stopping the Oxy. Anyways, I hope it will get better. I am trying to stay strong for my 3 children. :grouphug:

Keep in touch,
Rachel :Thanx:

Thank you for all your support! I did ask my doctor about the neurostimulator and he said that nobody that he knows does the implant of this in the Northwest. It is a great thought though. :hug: I really am glad I am not alone!

As with you, the docs are all afraid to do anything else to help with the pain except for changing meds as needed. I have come to grip with reality and realize I am in this for the long haul. My work is a big help for therapy since I am too busy to think of the pain, which is awesome until I leave work and then when I get home from work the pain hits me hard. I am glad that I can still keep up with my three children and keep active in daily chores but there are times it just doesn't help and you need that extra support! Thank you!:hug:

I just replied to Nik-key yesterday and noted that I had a med change from OxyContin to Methadone, three days ago. Well, last night at around 2:30am I woke up to this terrible itching all over. I guess there is another thing to add to the Allergy list!!! This sucks, I am so sensitive to all the meds and end up with horrible reactions. I called the doc and now am waiting around the house til he calls back I hope it is soon! I can't stand the itching.

I hate this AD it really really bad and of course today it is 102 degrees F outside.:yikes: Too hot for me! I am too young for all this (28) LOL! Hope your day goes well and at least somewhat painfree!

~Rachel

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

My Husband has AD, and I think we've actually found something that works--for him
 

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.

Why do the neurosurgeons dissapear?
 

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

gamma knife for AD
 

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...

Hi all, I'm so sorry to here about everyone's pains.
I myself had the MVD surgery back in 2004 to remove a tumor that was basicallly connected to my trigeminal nerve. The Neurosurgeon removed part of the tumor, but was unable to remove all of it due to the damage that would be caused to the nerve. Unfortunately the nerve was damaged and since the surgery I have been numb on the entire left side of my face. I also am having the electric shocks on my face and the feeling of several bees stinging my face in several locations.
Can anyone tell me if this sounds like AD, I really would like to know so that I can figure out how to deal with this.
I am INCREDIBLY happy to know that there is other's that I can talk to about this.
If anyone has any advice for me I would truly appreciate it.
Thanks and God Bless!

p.s.
 

If I had AD, I would try mirror therapy before anything else. No drugs, no surgery risk. And it controls pain better than anything else we've tried.

A.D.
 

Taylorschott, I have never had anything done for my A.D. because I read that it could actually make the pain worse. I cannot imagine having worse pain than I do now. I'm going to try to get the mirror thingy going. My problem is getting my husband pinned down. He is the only one around. He works hard and when he comes home he is tired and wants to rest. I have 7 dogs.............maybe...
No, they are too busy eating and sleeping. The cat got offended when I kept
complaining about his claws. Bless you and your husband,
Truely a believer, Doodle bug7

I know of a member here that did mirror therapy for phantom limb pain it went very very well for her. I also watched a video of mirror therapy I would do it in a heart beat!!!!! Both of you are in my prayers!

cltmet70 yours dose sound like A.D. . I have A.D. but I also have a neuro stim implant to help controll the pain.
Bless you all and many low pain prayers too. :grouphug:
PEACE
BMW

doodlebug, you are not the only person who has had a hard time figuring out how to work this in. i think we are lucky in that regard. we started doing it while we were on vacation. my husband is retired (partly due to disability, of course.) i only work part time since our son is still young. so i think we have an easier time than most. even so, it is hard for us to get it in more than twice a day now that we are back and school is in session. and there are people who have written to me who don't have anyone to do it. so we need to figure out some creative solution. some day, maybe PT's will be trained in this and someone will come to your home or work and it will be covered by insurance, (OK, OK, I am seriously fantasizing here...) but until then, we're all just figuring it out. I love the dog idea. Maybe a specially trained mirror-therapy dog?:wink:

AD From Gamma Knife
 

I got AD a year and a half after the GK, the DR told me there was nothing he could do. I just try to hang on day by day. metal1:(

AD from GK?
 

I must admit, I am a little confused. I seem to keep running across people who get AD from GK. They were trying to treat my husband's AD with GK. And they told us there were absolutely no side effects. Maybe it depends on where the GK is? As far as we were told, he was the only person with AD who had had GK to ablate the sphenopalentine nerve bundle. All the rest (about 16 or 17 as of last January) had had it for atypical facial pain. It did not work, but it also didn't seem to have any side effects--for him.

I was always lead to believe and most everything I have researched about A.D. This includes my neuros and pain doctors over the last 9 years... that once you have A.D. any surgery is pretty much out of the question such as gamma or m.v.d. I see more often that people get A.D. from those types surgeries failing or from complications from those surgeries . I myself am in a corner as my leads have slipped with my neuro stim and I am told no one should work on me ..I meen no one should attempt to adjust my leads as it will make more permant dammage ,make things worse. It is hard to even find a neuro that will see me a second time once they find out I have a neuro stim and the leads have slipped. even doc who put it in says he wont go in and fix as more dammage will be done and things will be way worse then they are now. so I am stuck .
Which is a big issue with those of us who have A.D. and why mirror therapy looks so dang wonderful and gives hope when there doesnt seem to be any.
I am curious why a doctor told you and or your hub that gamma would help a.d.?????? I am actuly kinda of suprised to say the least to hear a doctor would say any surgery like gamma would help A.D. ????

Taylor check your message box here ...top right directly under your name ;)

FAILED MVD aug 2006
 

Hi, Same thing, cuties, give it time, what time to figure out how to survive?
My insurance company says I can't take fentanyl cause it is an off label use.
Can we petition the drug company to take the word cancer out or add brain injuries in? I'm so upset today... I can't cope anymore. I lost all my friends.
My family is mad at me; my husband of 27 years resents me or maybe it is himself, because the first 6 years the neurosurgeons were telling me not to get the surgery and then my husband found one who would.
I am so sorry for all of you in here that share this disease. This should be a disease they do on people who molest children -- now wouldn't that make criminals think thrice? AW, I don't mean to come in on my first time and be balling like a baby cause I realize finally I get it, no one wants me, loves me, but u know they do, they just can't cope either. I say we write our congressmen; write to Obama, these doctors take an oath that they will do no harm. What I understood is that if there are a-typical symptoms MVD is not recommended. I just had a pain pump put in, for what? so I could have another scar? I'm venting and please I don't want anyone to hurt. But I hope it is safe to vent. At least no one in here will scream at me b/c I'm crying or in pain. The new pain doctor I am seeing, well his PA called me an addict a few weeks ago. What? It still bothers me. The doctor said he would see me and not she. When I called in for a refill of my pain meds. Instead of 1-2 every 4-6 she gave me 1 every 8 hours. why? I'll have problems getting a refill with my insurance company this month at least. She just graduated this past May. She put Clonodine in my pump and I went from 130 lbs. to 190. in a month or six weeks. My husband had to take me to Kohls to get pants bigger and bigger. Now I read that it is a topical. Has this happened to any of you? Tegretol worked for me when I had TN, I only lost short term memory and most of my expensive jewelry what hotel I was staying in what room, it was horrible. ok, this is the end of my own little pity party. I'm sorry if I offended anyone, but I would be happy to hear from anyone. I know I am not alone and tho it is little comfort, it is when I am not so pitful as I am today. I got this when I was 40; lost my underwater dive career in film and photography, my friends and some family and now my 76 year old mother is complaining of the same symptoms. Drs. told me I was too young to have it. Now my research tells me infants can get it. So drs. don't know everything. But it would be nice if they would treat us better.

:hug:I am taking Dilaudid 8mg 1-2 every 4-6; 2 ambien; and I have a pain pump that has Dilaudid in it apparently set to maximum with balcofen in it (muscle relaxer). At one pt. I was taking 240mg Oxycontin then I had MVD; did a 6 days in rehab (per my psychiatrist); walked out of there with NORCO; within a month I was back to 40mg Oxy 3x per day. I understand that oxycontin is best taken every 8 hrs. based on the bell curve. It starts wearing off after 8.
Ask ur doc about it. He may agree and I know it will likely make u feel lots better. God Bless;

I understand your pain, and your frustration. I ended up with ON and AD trying to find a cure for TN. Now, I have all 3. I did everything that was asked of me, and yet, I ended up in worse pain. It was hard to comes to terms with.

My husband use to say, Doctors only practice medicine... then when he was angry he would say, and I am sick of them practicing on you! It is so hard on those who love us isn't it? *sigh

Are you going to a pain clinic? I have always found more compassion there. It is vital to have a doctor you can talk with openly and honestly with about your pain, and how it is effecting your life. They are out there. I have two wonderful doctors who have helped me over the past 11 years.

WOW, that just hit me, typing that out... 11 years! Back in year one, I remember thinking I couldn't survive the day..... amazing what one can adjust to.

Keep talking ((Julz)) we understand :hug: Nikki

Trying to survive AD
 

Thank u Nikki. I'm so sorry you have to suffer too. Tell me what r u doing for pain? And yes, read below about my pain doc.
I can't begin to tell u that it's ashame I am not the only one except that I feel this doc knew I would end up with AD. I am not the first. His comments that "O, my wife has it" makes u think he knows... he can cure me. Then later, after surgery you hear him talking to one of his India interns and say, "o, my x has that, why do you think she got the house?"

This doctor has a reputation for this as I was told by another Neurosurgeon. If only my husband would have taken 5-6 other Neurosurgeon's opinion; but no, he looked until he could find someone to do an MVD thinking it would help me. I came home; went to detox off Oxycontin and that's when my life was changed by the pain of AD. Now over a year later, I have problems with anger.

My brother in law just had surgery at a VA hospital and they took the wrong kidney and sliced his spleen and had to remove it. He has the kidney with two tumors in it. And, to make things worse, they have an immunity to prosecution.

We pay $30,000 for both of us to have health insurance and my pain doc says
with 7mg/day of Dilaudad per interthecal pain pump and 1.5 of miracaine (this is again a new med they are trying) that this is the best they can do. I have no more options. Nada, Bupkiss, nothing more anyone can do. I welcome any suggestions b/c i have a very large family who loves me. Please help me.

My mother has TN and has had two cyber knife surgeries (kind of the same as gamma). She went to the Mayo Clinic and they suggested a stimulator, but this kind had only been done 15 times with 5 successes. Went to another neuro who partially severed the nerve. Now has AD on her face and especially in her eye. Did your eye give you much trouble. Has needle and pulling pains. Doctors are finally talking about using a stimulator. Can you tell me where you got yours and who did it. Also can you let me know a little more about the types of sensations you had with your AD?

Hi kaemansmom :hug:
I sent you an email did you get it???

Understanding and Being Judgemental
 

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:

hello
 

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-:hug: great info to share :) and t.y. for those nice words of me.right back at you :)
:grouphug:

linnie Hi and welcome to NeuroTalks T.N. forum :hug:
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

Post MVD problems
 

Hi, I thought to share my post-MVD nightmare :eek: I was diagnosed with AD & I tried to deal with it the best that I could obviously as well as the surgery pain in general. What worked best for me was cold/ice which is totally against my usual train of thought as heat is my main comfort. I used a gel bag, I let it defrost a while before putting onto my face so that I could mould it better. Once I got past the first 5 minutes it was fine because my face was numb and I found that my AD gradually subsided.

However I did have 'other things' going on at the same time, unfortunately permanent, as my hearing never returned. AND, since the op I had Tinnitus which has never left me. My surgeon didn't really want to know either, it was like he'd 'done his job' that is to say he'd performed the mvd.

The 4 months following he maintained that the hearing would return & I'd believed this but at the same time was concerned for myself. I asked to be referred to the ENT, which I was. After a consult and tests, I was told that the ear was damaged & that the hearing would never return. And yeah I pretty much lost it for a while.

bump up for some readers in search of ....

Just an update
 

how can I find your blog?
 

You mentioned in a different thread that you describe your success in your blog. Where is it located? Thank you for the bit of hope you've given me.

Hello painpaul and welcome to NeuroTalk.

I don't know if you noticed, but taylorschott posted about his blog back on 09-09-2008.

I did look, but the last time they signed into NT was the next day. Just letting you know because they quite probably will not see your question.

Hopefully you will get replies from others, however.... so I hope you soon get some answers to your concerns.

I am new to this forum but have seen many of you on the TNA web site forums. God bless you for posting and giving the rest of us some clues on how to find help- especially calewark and BMW who have pointed me to PNS/SCS. After four sinus surgeries before successful diagnosis of TN Type 2 at OHSU in 2006, 3 years of many meds including trileptal and Lyrica, SRS at UCLA in 2008 with zero success, MVD in L.A. in 2009 that cleared the original pain but created all new deafferention pain (aka, Anesthesia Dolorosa) and started Fentanyl plus hydrocodone in 2010, I am searching for doctors who perform PNS/SCS. Found many doctors who do PNS/SCS on the Medtronic, Boston Scieentific, etc. web sites but they all use it only below the neck (mainly spinal pain). My pain doctor is going to ask the Boston Scientific sales rep and I have sent questions to all the manufacturers web sites about doctors who use these devices for face pain. Now to the point, with the correct words in the search engine today, here is a new online TN diagnostic questionnaire from where I got my original diagnosis after MRI and physical
examine by Dr. Kim Burchiel and Dr. Andrew Zecast at Oregon Health & Science University (OHSU). These doctors are the west coast leaders like Dr. Peter Janetta is an east coast leader in treating TN. And, Burchiel makes presentations and publishes at the TNA conferences.
I am new to this forum but have seen many of you on the TNA web site forums. God bless you for posting and giving the rest of us some clues on how to find help- especially calewark and BMW who have pointed me to PNS/SCS. After four sinus surgeries before successful diagnosis of TN Type 2 at OHSU in 2006, 3 years of many meds including trileptal and Lyrica, SRS at UCLA in 2008 with zero success, MVD in L.A. in 2009 that cleared the original pain but created all new deafferention pain (aka Anesthesia Dolorosa) and started Fentanyl plus hydrocodone in 2010, I am searching for doctors who perform PNS/SCS. Found

Many doctors do PNS/SCS on the Medtronic, Boston Scieentific, etc. web sites but they all use it only below the neck (mainly spinal pain). My pain doctor is going to ask the Boston Scientific sales rep and I have sent questions to all the manufacturers web sites about doctors who use these devices for face pain. Now to the point, with the correct words in the search engine today, here is a new online TN diagnostic questionnaire from where I got my original diagnosis after MRI and physical examine by Dr. Kim Burchiel and Dr. Andrew Zecast at Oregon Health & Science University (OHSU).

These doctors are the west coast leaders like Dr. Peter Janetta is an east coast leader in treating TN. And, he makes presentations and publishes at the TNA conferences. Since I am a new member I caqnnot post the web sites but you can find them with a search on *** then school-of-medicine then neurosurgery or neurological-conditions for info about electrical stimulation and other treatments for TN. Definitely try the very informative online TN diagnostic questionnaire (you have to submit the questionaire to get excellent explanations of the types of TN and suggested treatments of each).

Will post again if or as I find more doctors who perform PNS/SCS for face pain.

Anesthesia Dolorosa
 

In answer to some posts. I am new here. I started having Trigeminal Neuralgia pain when I was 52. I am now 60. I suffered and was on all kinds of medication. I was then set up for a Gamma Knife surgery. This worked for 18 months and then the pain returned. My neurosurgeon in all of his omnipotent wisdom determined that the best course of action was a microvascular decompression. He failed to mention, that since I had already had Gamma Knife, this might damage my nerve. Well it did. For three years now I have suffered with Anesthesia Dolorosa. I have been in pain management all of that time. The surgery left me deaf in my left ear, with immense tongue pain on the left side. I am fortunate that I have found a wonderfully compassionate and skilled pain managment doctor. I have recently gone through a trial of having a wire run along my lower jaw and attached to a control device that stimulates the nerve, thereby giving me relief. It is working so well that next Tuesday I will have the permanent implant put in my chest. I am detoxing from morphine and I find that I want to live again. I had given up and wished I would die. My suggestion to anybody with this, is to find a good pain managment doctor. If they don't help you, find another. And most of all; do not ever let another neurosurgeon PRACTICE on you. My best to all who suffer with this disease.
p.s. this device is made by St. Judes

WELCOME Crandies :hug:

I was wondering if you would share your story on my thread above ..it is about stimulation and anything your share would be helpful to so many others. here is the link
http://neurotalk.psychcentral.com/thread124048.html
Thank You and please know you are in my prayers for everything to be successfully with your final implant and healing process.
PEACE
BMW ...Tina

Re:anesthesia dolorosa
 

I can relate SOOOOOO well to just about all of you. I am new to the forum, so this is my first post. I have trigeminal neuralgia which was treated over the past few years with nerve blocks (pain had returned before I got home from pain mgmt clinic),gamma knife surgery, also known as stereotactic something(can't remember),twice.Each time it worked for about 2-3 months, then returned in another branch of the nerve. After that I had radiofrequency lesioning to the nerve, which worked right after the surgery and into the next day. After that it crescendoed quickly and violently to a level I had not known prior to that. Went to see the anesthesiologist(!!!) that put the huge needle in my face and dug it around in my cheek during which I was awake off and on,(it had hurt so badly it was like sheer terror), and he told me I had anesthesia dolorosa.Since then I have only had infusions of lidocaine, now every 2-3 mos., and I have not heard anyone else here say they have had that.He has suggested that nerve stimulator you have talked about, Burntmarshmallow. I have finally decided to try it. Initially, stimulating that area was the LAST thing I wanted to do, but after reading all this, I understand better about how it can work, and I want my life back more than I can say.I am a registered nurse who cannot work because of the pain and med effects. I love what I do and miss it so much.I am taking Lyrica, among many other things, but it is the one that has taken my ability to think well away. My memory is awful, I can't concentrate well, can't process information as quickly or as well in general,I don't have any sense of the passage of time, can't make decisions well, and am in a fog sometimes. I do take a stimulant drug to counteract these things, Vyvanse. My question to you is: does Medicare pay for the surgery and the stimulator, since it is an off-label area in which to use the device?

Anesthesia Dolorosa
 

You are not alone. I have anesthesia dolorosa. I've had Gamma Knife and a failed MVD for treatment trigeminal neuralgia. My neurosurgeon told me the nerve just needed to heal. That was ten years ago. They really dont want to be reminded of their failures. So the sooner you disappear the better they feel. I have seen several neurologists since then who love to prescribe drugs. Many of them I had already tried but to be a compliant patient I tried again. I keep hoping a new treatment will appear. I have never been officially given the diagnosis of anesthesia dolorosa. Its like they don't want to say it. Why is that? Why did I have to read about it in a forum and figure it out myself? More than anything I want validation. That what happened to me was awful. That life is unfair. Would I feel better? Maybe......maybe not.
Im sorry you have AD. I wish you the best of luck.

QUOTE=Kewlbutterfly;345657]Hey all,

Long time since I last posted in here but, I finally got the official diagnosis. Anesthesia Dolorosa.

I don't know if you all remember that I had an MVD procedure done in Aug of 2006 and it had failed leaving me in more pain. My Neurologist now is Neuropathic Pain Management Specialist, he told me that this was caused from my Neurosurgeon damaging my trigeminal nerve during the MVD procedure. Now, I am in constant pain like when you go to the dentist and the numbing stuff starts to wear off but this never does, it feels like pins and needles yet it never ends. My Neurosurgeon wanted nothing to do with me after the surgery and now I know why! He kept telling me to "give it more time to heal". The bad thing is I have no "physical" way to prove it because you can't physically see the damage. (It's not like he cut the wrong arm off, it is worse no one can see my pain) Anyways, I am posting to see if there are any other people out there that have had the same thing happen to them.

Anyone else out there that is suffering from Anesthesia Dolorosa after a MVD procedure? I would love to know that I am not alone!!!:Sob:[/QUOTE]

Hold your Head up! I have AD as well - we can be strong
 

I had mine - MVD done in the year 2000 - they assured me that they knew what they were doing NOT!! Nothing showed in 4 CT scans, 5 MRIs and an Angiogram and they still did it!! After the operation was over I woke with the right side of my face severly paralized - to the point were I was drooling and couldn't close my eye. I kept doing the work out that the gave me and eventually most of it came back you can still see some of the problem. Because of the damage the doctor did no one will touch me syrgically anymore and my only option is pain killers - YEAH! And I am being sarcastic on that. My regular GP retired so I've been through a series of three who are all convinced that I either don't hurt as much as I say I do or I'm a drug addict looking for my next score. Nobody will take the time to LISTEN to me and help me - all they see is the drugs that we all take and it just frustrates me to know end!!! You are not alone - you AD was more than likely caused my your surgeon and if you can I would advice you to sue for mal-practice. Good luck - and the BEST piece of advice is find a great General doctor so you don't get further screwed over like I am right now.

@saidesmom Yes I know a few who have gotten the PNS paid for by Medicare . If it is last resort and helps it is less costly in the long run then meds. You ALWAYS have to go threw psyc testing and stuff before your are approved for trial weather insurance or Medicare or you yourself pays.. EVERYONE has to have that testing done.
Mine was from trailer truck hitting me from behind I had to sue the company and went threw trial by jury.. but The stim gave me my life back.

@Cat Parlee Are you saying that you have no other options ie no other surgeries
so your at end of line and meds are the only way to mannage the pain monster?? Me too My right lower was snapped in half and the plates to hold each side of jaw the one on the right side way to close to the break.. so MVD Gamma all that were no longer an option then once any of the meds stopped or didnt help at all... I was first to Try the PNS ... you should think about looking int it yourself. I am NOT pain free but it helps lower my pain and just bringing it down a notch or two is a blessing.
if ya read the stickies up top here you will see it isnt such a big operation not like mvd or anything. perhaps ask your doc about it. it is used for ad atypical bi lat etc... just a thought. I want to give you hope as you need that So DONT GIVE UP!!!! your not alone we are here for you and will help you any way we can.
endless Low pain to you all.
PEACE
BMW

P.S. it is next to impossible to sue even if it was the mvd surgery that caused the permante damage and the AD.. as you sign that damn paper before any surgery sayin you understand the possibility of risks including death. my heart goes out to you guys.:( Hugs and my prayers.
that just bring me back to my thoughts I have had FOR YEARS NOW of having the PNS out there more available to others BEFORE having MVD. ugh some day some day I wont give up on that not ever .