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Anyone in here with Anesthesia Dolorosa post MVD?

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Old 08-13-2008, 12:31 AM   #1
Kewlbutterfly
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Default 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!!!
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Old 08-13-2008, 06:52 AM   #2
Burntmarshmallow
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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!!
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

Low pain wishes Kewl
PEACE
BMW
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Old 08-13-2008, 09:16 AM   #3
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Hi Kewlbutterfly, Love the name
Take my hand, you are no longer alone

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 Anything I can do to help, just let me know~Nikki
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Old 08-14-2008, 06:59 PM   #4
Kewlbutterfly
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Quote:
Originally Posted by Nik-key View Post
Hi Kewlbutterfly, Love the name
Take my hand, you are no longer alone

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 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. 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.

Keep in touch,
Rachel
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Old 08-15-2008, 03:22 PM   #5
Kewlbutterfly
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Quote:
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 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!!
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

Low pain wishes Kewl
PEACE
BMW
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. 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!

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. Too hot for me! I am too young for all this (28) LOL! Hope your day goes well and at least somewhat painfree!

~Rachel
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Old 09-07-2008, 07:56 AM   #6
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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
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Old 09-08-2008, 09:27 PM   #7
taylorschott
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Default 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.
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Old 09-09-2008, 06:20 AM   #8
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Quote:
Originally Posted by taylorschott View Post
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.

Last edited by Curious; 09-09-2008 at 07:14 AM.
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Old 09-23-2008, 05:16 PM   #9
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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
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Old 09-24-2008, 07:56 PM   #10
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Default 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...
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