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

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. 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 ...

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

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.

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.

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