MVD Progress Report - 258 days after surgery

Hi Everybody...It has been almost 9 months since MVD surgery at USC in L.A.. I had zero pain for almost six months and in late May I started getting funny twinges...and by early June TN was back...but surprisingly enough the pain jolts did not feel as bad or as deep as before the MVD. I visited my brain surgeon and he put me on 4 to 6 hundred mgs a day of tegretol...this helps but I still have to deal with many facial pain strikes everyday...Soon after I visited the doctor I broke out in shingles..I didn't know what shingles were but I later learned that it is related to chicken pox and a virus that attacks the rash was on the left side of my lower back and very whole body ached...for six weeks or takes a long time to heal from shingles...The shingles are gone now and the TN shocks are almost gone too...I'm praying that it was the shingles that fired off my worn out old trigeminal nerve...Anybody out there heard of such a thing?....I will keep you all posted...Life is Good....I am going to try and play a round of golf this week with my buddies...but Im staying on the tegretol just in case.

When i was first diagnosed, the doctor told me he had seen someone just that morning with shingles and atypical facial pain. He said that the virus can cause nerve pain. He said that in the case of shingles causing nerve pain there is a different type of medication - antiviral medication needed - maybe you should ask about this just in case it is causing your pain and you need to treat the virus. In my case it was not shingles - a pity as I think if the virus recedes, so may the pain sometimes.

Hi LucyLucy,

My family doctor prescribed an anti viral medication, I cant remember the name, but I had bubbles on the rash and he said that I needed to take the meds right away or it would not help...I took the meds for 10 days. I still have a very small rash left...and very little pain if any from the shingles...but shingles attacks the nerve system and TN is a nerve condition...I'm hoping that it was the shingles that set the TN off again and perhaps the TN will fade away with the shingles....

It’s called Post Herpetic Neuralgia and it’s very likely that the shingles caused your current TN. You might want to talk to your doctor about how you should handle a future attack, because it could happen again. The key is to keep the virus at bay. I don’t know much more about it than that. I do know that the standard meds are prescribed for it - Neurontin, Tri-cyclics, etc. Hope you feel better already!

Hi I’m a newbie here. Just dx’d w TN last week after an ungodly attack on the 13th. Due to having itchy rashes from lupus and cutaneous porphyria I MISSED THE SHINGLES on my back and arm. I DID take a pic of them though since I thought the rash was unusual. Go Figure. So I MIGHT be in post herpetic neuralgia boat as well. My rheumie and neuro told me to expect a return of symptoms and put me on tegretol. It’s almost three weeks since the fiasco and my left face has a twitch and occasional pain but not NEARLY as bad as it was. Thanks to all, Julie