Anyone in here with Anesthesia Dolorosa post MVD? - Page 6

BethO2L · 06-11-2012, 02:45 AM

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...

*Dena · 06-11-2012, 09:11 AM

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!

Burntmarshmallow · 06-16-2012, 10:52 AM

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

Quote:

Originally Posted by *Dena

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!

BethO2L · 09-05-2012, 02:53 AM

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

trainwreck · 09-05-2012, 08:12 PM

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

trainwreck · 09-05-2012, 08:21 PM

Quote:

Originally Posted by BethO2L

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

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