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My husband, David, contracted Trigeminal Neuralgia in 1997, on the left-side of his face.

In 1999, in order to relieve this condition, he had a microvascular decompression along with a partial rhizotomy of the left trigeminal nerve. As a result, he was left entirely numb on the side of his face where the surgery had been done--among other side effects, including a palsied eye, tinnitus, and hearing loss--and several months later he began to have shooting, burning, throbbing, and itching pain on that side as well. He was diagnosed with Anesthesia Dolorosa(AD), an extremely rare condition similar to phantom limb pain, except that it is in the face and that the face obviously is still there, but numb.

He tried many different drugs and drug combinations for the condition. The most successful way of controlling this intense pain was for him to take Neurontin, which had such a soporific effect that he would counteract it with stimulants, including caffeine, methylphenidate, (Ritalin) and Dexedrine. He quickly developed tolerance to these stimulants, and they eventually caused severe cardiac problems, as well as substance abuse. He was disabled by his condition much of the time; even with maximum doses of Neurontin, and even when taking it with Nortriptyline, he would often have pain in the 8-9 range (out of ten) and he could not work or even provide childcare for our son on a consistent basis since we never knew when he would be awake. Torodol helped when he had severe pain, but it often did not last long enough and he could not safely have enough injections to keep the pain under control. Topical Lidocane also helped take the edge off, but was rarely very effective.

He continued in this manner until 2007 when he received a series of sympathetic nerve blocks, which reduced the pain significantly, but only for a few days at a time, and they worked for shorter and shorter periods each time they were repeated. In January of 2008, David underwent a gamma knife procedure to ablate the sphenopalentine nerve bundle. Before the procedure, we were told that 16 other patients had had the procedure, and that all of them had experienced either complete recovery without drugs or an 80% reduction in pain. So we were optimistic going in. It was only after they had done the surgery that the doctors admitted that they had never done it on someone with AD before and that all those other patients had had atypical facial pain.

The surgery had no effect as far as we could tell. It was supposed to have an effect after as little as 2-3 weeks and as much as three months. Three months after the operation, although he did not feel any differently, David tried cutting back on his meds to see if he could do with less, but even to simply mitigate the pain, he was forced to go back to his original doses after a month or so. About six months after the operation, he was in the hospital with cardiac problems and the cardiologist was concerned that the Neurontin could be contributing to the cardiological problems and reduced his Neurontin to 2400 mgs a day, which left David in so much pain that it had to be controlled with daily injections of Torodol--a solution that only worked as long as he was in the hospital.

So it seemed to us that the gamma knife had not helped. At that point, we were more or less at the end of our rope. As long as he was on the high doses of Neurontin (3200 mg) without any stimulants--which the cardiologist forbade--David was incapacitated, but also often in pain. It did not seem like we had many other options. Furthermore, the cardiologist was urging us to get him off the Neurontin in case it was contributing to the heart problems, but it seemed clear that reducing the amount of Neurontin would send his pain levels through the roof.

1 comment:

uwfotogal - said...

I've suffered from TN for about 7 yeasr when I had a Stereotactic RadioSurgery, similar, I think to Gamma Knife, but more linear. Difficult to explain, but it did nothing really. I continued to have pain for months and they said it may take some time. I didn't think I really had much time for this quality of life. About 7 mos. later I had the Microvascular Decompression surgery by a dr. in Tampa who is said to be the "best" in this area. I left there, addicted to 240 mg. oxycontine a day. I was chemically dependent. I was dizzy had to walk with a cane for 6 months. Finally I went to detox hospital on the advice of my psychiatrist and he took good care to get my baseline down; we could not, however, get me completely when the AD kicked in. Aggrevated also by a two cavities that were on the upper right. The pain was so bad, but I always told myself that this was temporary and I was a "steel Magnolia" that's at least what my niece, Amanda was calling me.

My dr. sent me to a pain specialist and for several months we tryied oral medication. When the insurance decided I could no longer take that medication we decided to put a Medtronics Pain Pump. It has been about 6 weeks and Finally I am receiving a dose that is taking care of the pain.
I have had a week without pain.
A week in about 10 years!!!
I don't understand how high doses of Neurontin has helped people. I took high doeses at once but I always need an opiate based medication to go with that.

I just have to say, however, you do it, just keep living and in my case in was the pain pump with sufentanyl and clonodine. I still take a break thru pain med if needed, but for the most part, my life is finally good. So, I am going to Grand Cayman for a couple days while the husband, works.
Thanks for allowing me the reply.