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Old 10-20-2006, 12:16 PM #1
csabia csabia is offline
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Default can anyone suffering from anethesia dolorosa describe it?

I'm interested in knowing your experience.
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Old 06-02-2008, 06:12 PM #2
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Default Anesthesia Delorosa

Hello. I can't believe that some other person has said those words. Anesthesia
Delorosa. I have had AD for 5 yrs. The reason is that I have it is because I had one Microvascular Decompression in K.C. that failed and two more brain surgeries at Mayo clinic in Rochester Minn. As a last resort,they severed the trigeminal nerve. Now the left side of my face is numb but yet I have pain 24/7. This pain is not a scary pain like T.N. but gets pretty severe at times. I still see different Doctors for the various problems that A.D. has caused. My eye is numb so I still have to go to my Ophthalmologist as my eye no longer produced tears. He has put plugs in and out and finally we got it as right as he could.
My ear now has a tube in it as I get fluid laying in it occassionaly. My left nostril
is dry and I get sinus infections every few months.
My ear has also lost some hearing.
To be truthfully honest, this has been a nightmare. A very devastating event in my life that came out of the blue. If I had a choice to make between A.D. and T.N., I would absolutely choose the A.D. It has no lightening strikes in my face that made me petrified like T.N.
The A.D. pain is , at times, like the little nerves move around in a kind of burning fashion. Sometimes it is like grabbing and tightening. At first it would
hit my lip like the nerve jumped. It is really painful when the nerves behind my eye start hurting.
I take Neurontin, Lyrica, hydroxizine, Paxil, Amytriptiline. I used to be on narcotics like Methodone and Oxycontin.
If you have questions, feel free to ask.
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Old 06-04-2008, 07:09 AM #3
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I too have AD caused by surgeries and damage to the nerves.
AD can be just as painful as TN in it's own right. It doesn't have the electric shocks, but it is a constant never relenting pain. It just wears you down.

My AD pain of course encludes numbness, but along with that my eyes has excruciating pain and from just below my eye to the top of my lip it feels like hundreds of bees are stinging me, all day, every day. I also have sensations like pulling and heaviness. Like TN, certain things can "trigger" these sensations to increase. Cold and wind

hope this helps you? Nikki
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Old 06-06-2008, 01:18 PM #4
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Default The constant pain of AD.

Nik-Key,
You are absolutely right about the pain from AD. The worst part is knowing that it will be like that the rest of your life. I was never told that this may happen .
The left side of my face is numb and it is hard to get use to it. When I first came home from Mayo I woke up in the morning and had the feeling that the side of my face was gone. I screamed in disbelief and told my husband that I didn't think I could live like this. He held me and I screamed with tears rolling down my face. It was devastating to end up like this. I feel for you and hope very much you don't hurt anymore.
Little Angels will be looking over you. Truely a Believer,
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Old 06-06-2008, 02:45 PM #5
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Default Dreaded pain-quite rare.

Csabia, Would you tell me what your interest is with us describing Anesthesia Delorosa? Do you or some one you know have it? Boy Howdy, I hope not.
Truely a Believer,
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Old 06-06-2008, 10:04 PM #6
Mylastnerve Mylastnerve is offline
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I am following this thread as well....I am considering an MVD, and cannot find decent, thorough, first person descriptions of if, just understated PHD-speak, for what sounds like a confounding and very difficult disorder.
If you don't mind, I, for one, could really benefit from what you have to say, as I try to make my own critical decision regarding surgery.
Thank you for anything you can share. It could really help.
Gratefully,
Mylastnerve
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Old 06-08-2008, 09:53 PM #7
Kewlbutterfly Kewlbutterfly is offline
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Default My Anesthesia Dolorosa story

Quote:
Originally Posted by csabia View Post
I'm interested in knowing your experience.
I have had ATN and TN since 07/06/06 at 6 am. I was officially diagnosed on 07/18/06 and was in so much pain from this monster pain I was desperate for a cure, an answer, anything that would help. The neurologist I first when to tried me on all the usual meds and med after med I had allergic reactions to. I was getting depressed and thought that I would never have a pain free life again. I got online and found a local Neurosurgeon that does hundreds of this procedure called a MVD. The doctor pressed to me that this was my only option. I read the risks (it did not say anything about AD) and knew that the procedure would keep me pain free for months to years. I signed up right away and my surgery was scheduled for 08/2006. I figured like you are probably now, why aren't people signing up for this potential cure?

Well, my surgery was supposed to be 4 hours long and I was to stay a few hours in ICU and 3 days in recovery. My surgery was 5 hours and I almost lost my life on that table. I was told later that my main artery wrapped several times around that 5th cranial nerve. He had to "make" a tool to get back to the end of the artery. I lost a lot of blood and was in ICU 36 hours and stayed in the hospital 7 days.

When I woke up from surgery I had a numbing feeling, but still felt the pain on my left side of my face, gums and tongue. It was weird like I went to the dentist and the Lidocaine was wearing off kind of feeling. I cried and cried but had hope in what the doctor had told me was true. I couldn't have been more wrong. The surgeon had told me that it was normal to feel this but to give it two weeks before going away, after two months visit he said give it 6 months. I will tell you to this day I have that and know now what it is called Anesthesia Dolorosa.

After all that I still had to go through lots of different meds and ended up on taking: Nortriptyline, Dilantin and a small dose of OxyContin (10mg). I am still not pain free but I am at a level of pain I can deal with. I believe that if you can keep your mind busy then it will bet better in the long run. I find that at my work I am so busy in a day that I tend to not notice the pain until I get off work, am bored or trying to go to sleep. You definitely need good support and lots of optimism as this is a long road ahead.

For me the AD pain is constant, varies with stress, cold, wind and just touching or brushing up against my face. Warmth doesn't really bother me that much. I do feel tingly prickliness all the time. It is frustrating because I know now that this will NEVER end. I have anxiety attacks at night and have to take sleep aids to get to sleep. The worse thing is that I am still having the TN shocking pains. The doctor I see believes that the nerve was only partially damaged but was enough that it will not go away.

I think people should research MVD route because of the risks of surgery, the recovery and the fact that the surgery is not a guarantee as the surgeons will tell you for ATN it is 50% and TN 85%. This is a brain surgery and that alone is scary. I could have died on that table leaving my husband and three kids ages 7 years, 4 years and 8 months. That scares me just thinking of how close it was.

If asked if I would do it again? I would have, knowing how desperate I was to get rid of the pain. However, knowing the outcome of the surgery, I would not have chosen this route. I hope that through my experience that I can help just one person and they can help someone else. Remember we are together and not alone. Good luck in whatever you decide. Sorry, so long and wordy.
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Old 06-09-2008, 07:13 PM #8
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Kewlbutterfly,

Thanks for posting your story. I post on another forum and it seemed that for a short time, everyone was deciding to go for an MVD. Some had good outcomes, some not. I'm not considering one, but I'm always thankful to hear everyone's story because we are all so different and the information available, I feel, doesn't always paint the most objective picture.

I'm sorry that you ended up with AD. I have a small dose of it due to repeated foot surgeries and its no fun. I can't imagine having it from failed MVD. It is one of the major reasons I won't consider an MVD.

Take care, Ellena
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Old 09-23-2009, 10:28 PM #9
findingjulz findingjulz is offline
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Default A better way to treat TN, perhaps

Quote:
Originally Posted by Mylastnerve View Post
I am following this thread as well....I am considering an MVD, and cannot find decent, thorough, first person descriptions of if, just understated PHD-speak, for what sounds like a confounding and very difficult disorder.
If you don't mind, I, for one, could really benefit from what you have to say, as I try to make my own critical decision regarding surgery.
Thank you for anything you can share. It could really help.
Gratefully,
Mylastnerve
MaryBird Perkins in Baton Rouge, La does Stereotactic Radiosurgery which like Gamma Knife is a bit more precise. I've heard several people who had one treatment and never were pain free. I tried that first, but I had more a-typical symptoms than clearly TN; but the doc I saw in FL swore that the MVD would get rid of all my pain. So, if you are sure it is TN, please call Dr. Waguespack in BTR and/or oncologist Dr. Rene Levine. There was also a news article done about it on their local television. I got to talk to a woman named Susan who had the surgery about 5 or 6 months prior and was still pain free. Non invasive, you have to have about an 8 lb. halo connected to the skull so that they can get precise measurements. If anyone with TN has a chance, try this before you have an MVD and discover next you have AD.
My life is a living hell because of an MVD; I hope this gives you some more ideas.
All three branches of my face right side are constant pain 24/7. It is very difficult to live this way and I ask the Lord to take me, but I think he has another purpose. He hasn't revealed it to me yet.
God Bless, I hope you can have this much more simple procedure, a bit of swelling in your eyes but no long term scaring or anything like AD.
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Old 09-24-2009, 01:50 PM #10
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[QUOTE=I just wanted to respond to you in regards to the mvd surgery. I had mine on June 16th of this year. So far it has been the best thing that I have done. I had the gamma knife radiation surgery first in May. I felt great for 2 weeks and then the pain came back. It changed a little after the gamma knife because now I also had the burning searing pain in my cheek that I never had before. By June I was so miserable that I was in bed every day afraid to even get up and walk for fear of making the pain worse. I felt out of options and was faced with having the mvd surgery or living like this the rest of my life. I was on 4 different medications and swallowing 30 pills a day. I was truly depressed and felt like a prisoner from this disease. I decided to have the surgery and hoped for the best outcome possible. My surgery was difficult according to my surgeon. I had large veins that were pushing on my nerve and he had to remove them. I was in surgery for about 5 hours and lost a lot of blood. From the moment I woke up from the surgery my tn pain was gone, however. Of course it was difficult to recover from the surgery itself, but my surgeon told me exactly what to expect. The incision in the back of my head only really hurt the first few days. I was bothered by the loss of hearing in my ear for the first few weeks. I could hear out of it but it sounded very muffled. I was ecstatic that I could finally eat whatever I wanted again, as I had lost almost 20 pounds and was thin to begin with. I started weaning myself off of my medication a little too quickly and at week 8 I started to experience some pain but nothing like it was pre-surgery. So I increased my medication until it stopped and I haven't had any pain since. I am now at week 14 since my surgery and very happy with the results. No numbness or residual effects. I know this surgery is not for everyone but I just wanted to share my experience with you. Best wishes to you and to everyone suffering with this horrible ailment.
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