It had gotten to the point my meds were causing more side effects then I wanted to deal with. (3000mg daily of Gabapentin, 400mg daily of Tegretol.)My wife was driving me to work. My employer realized my productivity was down, but was willing to put up with it for now until I got something figured out. I couldn't speak long sentences without slurring my speech. Hand dexterity was way off, as was my memory and thought processes.

All this and I was still having breakthrough pain.

I had surgery at Mayo Minnesota on 8/21. They performed a right retromastoid suboccipital craniectomy and then a microvascular decompression of the trigeminal nerve root. My neurosurgeon, Dr. Piepgras, was 80% certain a loop of artery was causing the problem, and that this procedure was the resolution.

Dr. Peipgras found where the artery was laying across the nerve, with 2 or 3millimeters of contact. I didn't think that sounded like much, but I had it explained to me since that is a significant amount. They have been separated, with a cushion placed between.

I'm reducing the amount of Tegretol I'm taking. Currently it's been cut in half to 200mg daily.

The surgery was Thursday, and I came home Sunday. I'm still trying to get a consistent daily routine established regarding sleep patterns, etc.

I have been told that in 2 or 3 weeks, I'll begin to notice relief from the TN pain. I also have some headache pain I'm dealing with, but Tylenol seems to be able to control that.

I'm tired right now. (It's taken me a half hour to type this.) If people are interested, I'll keep updating this thread and let you know how it goes.

I'm interested. It sounds like the surgeon found the culprit and hopefully put an end to your suffering. Its hard to visualize the amount of area involved and the significance of it in relation to the nerve so if the doc says its significant, then I'm sure he/they know best. I wouldn't worry about getting your daily routine straight right now. You've got a lot of healing to do and your system will be a mess coming off of your meds so be patient with yourself. It sounds like there are better days ahead of you. Take care, Ellena

It's been 18 days since the surgery. In that time, I tried reducing the Tegretol by half. After 8 days of trying that, the original pain was returning as the meds left my system. I was advised to return to the original dosage, and give it more time. I have done that, and am back to where I can tolerate the pain to brush my teeth and chew my food.

Of course, the side effects returned as well, so I'm back to being driven everywhere and stumbling around the house.

My question: those of you who have had successful MVD's performed, how long was it before you noticed relief?

I also have been diagnosed with Charcot-Marie-Tooth, and am wondering if that can possibly slow down the nerve healing.

These questions are on the list I'll be asking my neurologist tomorrow. I'm just curious to hear from others too.

Thanks for listening.

Okay, it's been awhile, thought I would provide an update.

As mentioned in my first post, I had an MVD performed on my right side at Mayo on 8/21. At that point I was taking 3000mg of Gabapentin and 400mg of Tegretol daily, still had considerable pain and was unable to work/drive.

During that surgery, the doctor noted another possible location where the nerve and artery were near one another but were not touching. As they were in no closer proximity than a location on the left side (when examining my MRI) he decided not to act on that location.

I tried backing off the meds at the two week point, starting with the Tegretol. I was never able to reduce it successfully. After six weeks, there was still no improvement.

The decision was made to perform another MVD on 10/21, exactly two months after the first. The second location noted during the first surgery was now touching, but only slightly. The nerve and artery were separated and padded with teflon, just like the first time. The surgeon also divided/sectioned the trigeminal nerve itself.

The nausea from the second MVD was MUCH worse than the first. I had spoken with the anestethiologist before the second surgery (I'd also had nausea the first time around) and asked what they could do different. They did what they could, but on the second surgery they were pushing/pulling stuff around for quite awhile, and so attributed my nausea to the effects on my inner ear.

One month later, I am still having equilibrium problems, so I have to keep my cane handy. The right side of my face is numb from my right temple down to the bottom of my jaw, from my ear to just past my cheekbone, and then right down the middle of my mouth to my chin. I can't taste on the right side of my mouth. (I take that back, I have taste there all right, but it all tastes like a rusty cast iron spoon.) None of the muscles in my face are drooping, and I still can control them all.

On the other hand, I have been able to slowly reduce my meds to the point I have quit the Tegretol altogether, and am only taking 1200mg Gabapentin daily. Once in awhile I'll have a slight twinge of pain in one of my teeth. It's nothing compared to what it was, but I have to admit I'm pretty gun shy, so it really gets my attention when it happens.

I have good days-bad days. It's hard to predict what day I'll have my balance, or be stumbling and bouncing off walls. What day I'll have energy or feel exhausted. What night I'll get rested, or be tossing and turning all night.

The current plan is to keep reducing the meds to zero, and then proceed from there.

I still can't work or drive, but the short term disability is in place. I'm approaching the point where I have to accumulate enough documentation from my doctor to roll over to the long term disability.

Thanks for listening.

Wow, has the doctor told you why the second MVD was necessary? I hope your pain eases up this time. Nausea following general anesthesia is the worst feeling. I hope the taste in your mouth isn't permanent as well. Sorry if I'm full of questions. I treat with a neuro at Mayo and he tried to get me to see another neuro surgeon during this last visit. I declined as this surgery scares the *$^& out of me. Take care.

EE03,

Sent you a PM