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Anyone in here with Anesthesia Dolorosa post MVD?

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Old 08-19-2009, 07:15 PM   #21
findingjulz
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Originally Posted by Kewlbutterfly View Post
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
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;
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Old 08-21-2009, 01:28 AM   #22
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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 Nikki
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Old 09-23-2009, 09:54 PM   #23
findingjulz
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Angry 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.

Last edited by findingjulz; 09-23-2009 at 09:55 PM. Reason: To add a thank you
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Old 01-19-2010, 09:50 PM   #24
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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 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
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?
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Old 01-22-2010, 07:37 AM   #25
Burntmarshmallow
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Hi kaemansmom
I sent you an email did you get it???
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Old 03-05-2010, 12:59 AM   #26
linnie
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Heart 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:
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Old 03-05-2010, 03:01 AM   #27
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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
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Old 03-05-2010, 05:27 PM   #28
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Calewark- great info to share and t.y. for those nice words of me.right back at you


linnie Hi and welcome to NeuroTalks T.N. forum
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
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Old 04-15-2010, 04:47 AM   #29
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Hi, I thought to share my post-MVD nightmare 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.
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Old 06-13-2010, 11:50 AM   #30
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bump up for some readers in search of ....
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