can anyone suffering from anethesia dolorosa describe it?
 

I'm interested in knowing your experience.

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.
Truely a Believer
D. bug7

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 :eek:

hope this helps you? Nikki

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,
Doodle bug7

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,
D bug7

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

My Anesthesia Dolorosa story
 

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.:yikes: 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.:hissyfit: 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.:grouphug: Good luck in whatever you decide. Sorry, so long and wordy.:Good-Luck:

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

A better way to treat TN, perhaps
 

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.

[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.

What a ride I had..........
 

After the failure of my first MVD when The lightening strikes continued to hit, I was in a state of such panic. I wouldn't eat, speak and went to the bathroom as seldom as possible.Two balloon compressions followed, with no luck.We drove to Mayo clinic in Rochester Minn. which is about 8 hrs. away. I lay down in the back seat with a heated rice bag.
I ended up having two more surgeries there and was there for three weeks. I was never told anything about A.D. Before we left My cheek started burning. I had not a clue what was to develop in the hours, weeks ahead. Never, never told a thing. I did not even have a name for it until this last two yrs. after finding NeuroTalk. I went to the computer and typed in TRIGEMINAL NEURALGIA after 4 or so yrs. later. I didn't even want to know anything about it,
because it had made me into a dehydrated, neurotic shell of a person. I gotta go, maybe write more later.
Bless, Doodle bug

AD
 

I had an MVD in 2003 after dealing with TN for 6 yrs. I had about 6 marvellous painfree months before it came back (although with a slightly different profile). I couldnt bear the thought of going through it again and managed with a steadily increasing dose of tegretol. By this summer I was up to 14 tegretol per day and just couldnt cope anymore. About a month ago I had a Radio Frequency Rhizotomy. I read everything I could get my hands on in advance and so was aware of the dangers. Now I have AD (partial numbness and severe itchiness on the TN side of the face) but, after the real pain of TN - I wouldnt call it "pain" - it's one heck of an annoyance but I would take this anytime over the 'little devil' I lived with for so long that gave me those shocks.

A.D. on the other end
 

A.D. is the dreaded complication from a failed M.V.D.
I never heard that it was from foot surgery. Where did you get the info? I had 6 foot surgeries and the only long term effects are chronic pain off and on, but A.D. is on the other end.
Bless, Doodle bug7

Bumping up ...

The pain described for those with AD
 

My AD pain started after Gamma Knife Surgery for trigeminal neuralgia.
First of all I would like to comment on my tn. It was the worst 12 to 15 horrible attacks that would last for 5 minutes to 35 minutes.....non stop pain.....every single day.
Now to AD...I would take the tn attacks back any day compared to what I have now. This pain is 24 hours a day, 7 days a week. It never stops. At least I had some pain free minutes in between attacks with tn.
THE PAIN:
BURNING. BURNING. BURNING. BURNING. BURNING. SOMEONE IS PUTTING A TORCH INSIDE OF MY MOUTH, AND OUTSIDE OF MY FACE.

HEAVY
PULLING
ELECTRIC JABS
SWOLLEN FEELING
PAINFUL NUMBNESS
HURTS TO TALK
HURTS TO EAT
HURTS TO BRUSH TEETH
VISE ON UPPER AND LOWER TEETH
RELENTLESS
SEVERE EYE PAIN
LACK OF CONCENTRATION
MEMORY LOSS
ITCHING

Pain starts on top of head,moving to forehead,nose,eye,cheeks,lips,chin,jaw,ear.

Inside of mouth: pallet,tongue,cheeks,upper and lower teeth,gums,lips

PROCEDURES: MVD JANUARY 2010: successful, got rid of TN PAIN

MAY 2010: Trial PENS.....stimulator for facial pain. Read threads on this site for stimulators
Successful.... Pain reduced at least 60%. Still on pain meds.

PRESENT...WAITING APPROVAL FROM INSURANCE COMPANY FOR PERMANENT PLACEMENT OF THE STIMULATOR

If you would like some information about the stimulator for facial pain, please email me at calewark@me.com. Also you can contact Tina ( burntmarshmello)
on this site.

Cheryl Lewark

There are options other than SRS or MVD such as PENS/SCS
 

I had successful Micro Vascular Decompression surgery in CA in July 2009 to clear my original constant and shooting pains but it caused a new constant left cheekbone pain (Anesthesia Dolorosa reported by other MVD surgery patients on the TNA and Neurotalk web sites). The left cheekbone pain is my main pain marker but its pain is accompanied by all left side upper and lower teeth , left side of tongue and left side lips in aching, burning pain. The pain has never gone below level 4 and increases every day to level 6 in mid morning and goes up to level 8 if I don't go to bed and either sleep or achieve some relaxation which is very difficult after the pain has increased. This new pain after MVD is really terrible but not as bad as the pre-MVD electric shock like pain. It is a tough decision to make on having the surgery. For me, it came down to when I could no longer stand the pain (measured by how many days I could get out of bed in a week). Neurologists still ask me why I had the surgery and it is clear they do not understand the pain.
I had SRS surgery in March 2008 with zero success. SRS, Gamma Knife, Cyber Knife and others are all similar methods for destroying the trigeminal nerve and they tend to tout the accuracy of pointing the beam of one machine versus another and forget to mention that they don't know precisely where to point the beam. Each doctor will point out the advantages of the machine that he has access to.

Recommend you go to the Oregon Health and Science University web site to get some excellent information on treatment options on TN Type 1, TN Type 2and AD (they call it deafferentiation pain). OHSU publishes neurological articles and presents at the TNA conferences as well. Wish I had better info to provide and can only say this site and the TNA site ** are the best sources of info. Fumbling through the medical sites was less useful for me other than to find the very low success rate reports of ablative sugery (SRS, Gamma Knife, Cyber Knife, etc.) then finding that MVD success rates are not much better. The good news is that the nerve damage causing the pain is unique to each individual and you may be in the lucky 70 percent success group.
My pain management doctor in CA is trying various pain drugs and the only relief has been with Fentanyl and hydrocodone which create equally bad side effects such as nausea, irregular heartbeat, muscle cramps in legs and arms and constipation without relief of the constant pain. 50 mcg/hr Fentanyl patch is not sufficient to prevent daily pain increases but 75 mcg patch causes a new, additional forehead and occiputal pain with nausea that is worse than the left cheekbone pain.
Also on the bright side, this web site and the TNA web site ** have grown tremendously in the past few years and now include optional treatments like PENS/SCS that were not even mentioned (or, more likely, I missed the posting(s) that expire).
Another suggestion that cannot be over-emphasized is to have family or friends search for specific items like the treatment options for you because searches are so fragile or dependent on searching on the right word or words or asking the right question. My brother searched on words that never occurred to me and found some awesome info. But, even more important, he learned something about my problem rather than continually quoting media and sales bites on treatments for me to try. You can't describe your pain to someone else but they gain a general understanding by helping you do research on what is best for you.
Best of luck in finding your answers.

Pain Management for Trigeminal Pain
 

I just posted about my experience with TN and AD. I would suggest to anybody that has TN to not go the traditional route of the MVD. Try pain management first. My pain management doctor has told me time and again that he wished I had come to him first with my TN. Just saying.

Pain Management before any surgery
 

Crandies,
You are 100% correct that pain management should be tried prior to any surgery such as Gamma Knife, Cyber Knife, SRS or MVD. I did not think that any neurosurgeon would consider you for surgery without going through the pain management med trials. For example, Oregon Health and Science University diagnosed my ATN in 2006 but would not perform the surgery even at my request until I went through a second round of pain management and even then I had to go to UCLA Medical Center 2.5 years after trying many different meds with very bad side effects. But, everyone is different and some meds work for some people and not others - just like the surgeries. In addition, doctors are learning about TN and trying combinations of drugs. I'm glad that you have had some success with your meds because all the surgeries are truly major and have significant risks. After my MVD surgery completely resoving my original pain but causing new, constant burning pain in new locations (AD or deaffrent pain), I am in pain mangement again and have been on opiates for months just to get partial relief. Finding a good pain management doctor is almost as difficult as finding a good neurologist with TN experience. TNA has gradually built a recommended list of doctors or neurologists recommended by us patients but has not published a similar pain magement doctor list that I know about. Believe me when I tell you that finding a pain management doctor really familiar with TN is difficult because I have been to several over the few years. Most don't know that there is Type 1 and Type 2 TN and either start you on Tegretol or vicoden. Here is a trivia point that three pain management doctors have discovered independently on me - Tegrotol makes me dizzy, drowsy to the point of not waking without help and causes severe migraine headache. On the other hand, Lyrica worked for the shock-like pains but not the constant pain. Reading on this forum shows that every individual seems to respond differently to the meds and we have to keep trying to find what works for us.
I tried to say that I agree with you that pain management should be the first approach before surgery of any kind and that the great majority of doctors (especially family doctors) will initiate pain management before discussing or referring you to a neurosurgeon.Thanks for reminding everyone that pain management is the first line of defense for TN pain because new comers need this guidance.
Ron