brookline

I posted on this thread in November 2009 and want to give everyone an update.

After having my TN pain return in November, I went back on the full regiment of 1600mg Tegretol and 60mg of Baclafin a day, spread out over 4 evenly spaced doses. I was so frustrated at this time by my neurologist. He was obviously a very religious man, which I normally admire in a person, but he took his religion to the point of not working on holy days (even when he was "on call"). Twice I felt I needed to get my medicines changed and was unable to talk to him when I needed to, and since he was the doctor "on call" none of the other neurologists in the practice would answer their phones either. My wife actually had to threaten him, through the medical society telephone referal system, to get him to respond, and then he was very very hostile for bothering him on his sabath or holy day. I wisely found another neurologist at a different practice who was able to see me and take over my case.

There was no give or take in my medications, I needed every mg I was prescribed. Missing a single dose by even an hour would cause the pains to return. I would need to plan days in advance if I needed to change the times I took medicines, so I could shift my schedule not more than 30 minutes each day. My liver enzimes were skyrocketing and finally a third medicine, gabapentin was added. I was a total zombie by this point, fortunately free of my TN pain, but barely able to stay awake. I was also very clumbsy, fell easilly, and eventually needed to use a cane to help when I needed to walk. Even simple tasks like typing or loading the dishwasher were major in my diminished capacity.

On a typical day I would get up, eat breakfast, then take a nap. When I woke again, it was lunch time. I generally was able to stay awake a couple of hours after lunch and usually watched TV or read a little before my afternoon nap. When I got up again, it was evening and I would eat dinner, watch a little TV or read, then go to bed again. I would need to get up at least once in the night to take my medicines. I wouldn't remember what I read or saw by the next day, and sometimes re-read things. TV show that were reruns which I had seen before seemed only vaugely familiar in a deja vu type way.

The Christmas holiday just sort of slipped by -- I know I opened a few presents from my wife and family, and watched others open their presents, but I can not remember much else about it. I was unable to shop for anyone but had a relative pick up presents for my wife and others. I do remember getting up to see the ball drop for the new year (2010), but I can remember few other events that winter. Eventually, my neurologist started backing down on the Tegretol, and I started to gain some short term memory and be able to think more clearly again. When I got back to 800mg of tegretol, I was still very tired, but at least able to think.

I started to study, in earnest the various surgical options (the neurologist felt I should wait and see if medications could control the pain, but after already spending 6 months of zombie like life, and never knowing if an attack was about to occur, I was ready to try something else). I spoke with my family doctor (who reccomended Gamma knife done locally), a family friend who was a vascular/general surgeon who had performed several surgeries on my wife (who voted for Microvascular Decompression or MVD) and I studied everything I could find on the internet. I also took out the TN books from the local medical school library. The more I read, the more I thought MVD was the best approach for me. I checked the local surgeons. All said they could do a MVD but only one had actually done one before. Pittsburg was a possibility, but my insurance would not cover a trip to an out-of-state clinic even though it was closer that where I finally went for the surgery.

I was particularly impressed by the Cleveland Clinic and the work of Dr. Lee. His practice was limited to brain stem and other "lower brain" surgeries, and he had an impressive resume of research papers and two text books he had written on surgeries in that area of the brain. I got copies of his books and papers and read them cover to cover -- over 1000 pages in all, and started to understand the process of the MVD surgery, along with the risks and complications. I was sold -- MVD it would be, and Dr. Lee was who I wanted to do the work.

It took until June for me to get my MVD surgery. There were many issues which prevented me from going earlier. First was getting my liver enzymes in check -- Dr. Lee did not want to do the surgery (and my primary care provider did not think it was wise to have the surgery) until the liver enzymes we back to a more normal level. Then there were scheduling issues and issues with insurance (complicated when my group coverage changed from one insurace company to another).

Finally I got my surgery on June 25th. I actually had improved on the medications with the reduction of tegretol and addition of gabapentin, but was still tired much of the time. I did return to work for a month or so before the surgery, putting in 6-8 hours a day in an office environment.

Everyone was surprised at how calm I was about my surgery. The clinic scheduled a day for testing, blood work, etc. before the surgery and everything was fine. They told me to get to the hospital at 8:30 AM the next morning. I was prescribed a sedative I could take the evening before, but I was very comfortable and fell asleep and slept well.

I got up the day of the surgery relaxed and walked with my wife and daughter the two blocks from our hotel to the building where the operation was to occur. I checked in, and was promptly prepared. The nurses and anesthesiologists were amazed that I did not need any pre-surgery drugs to calm me down. They rolled me to the surgical suite where I was able to meet members of the surgical team as we waited for my surgeon to complete another operation. They showed me some of the equipment they would be using and we discussed other topics. My surgeon had insisted on having the best of the anestheiologists work with him, and we talked quite a bit about how things had changed for him over the last 25 years. Other members of the surgery team seemed equally top-notch, and surprisingly friendly and all commented on my being one of only a few brain surgery patients who could make it this far without the need for any sedatives.

Eventually the doctor showed up, and after discussing things with me a little longer, I was ask if I was ready to be put under. I was, and within a minute drifted off into some type of "sleep". I don't remember anything until a nurse called my name and told me to wake up. I was in the recovery room. I knew I had been under the knife, and ask what time it was 2:30. I had been in surgery since 9:30. I had a very dry mouth so they brought a stick with a wet sponge on it to moisten my mouth. Almost immediately, they brought me a lemmon lime soft drink and some ice. I was feeling no pain.

After an hour or so, they sent me up to a room where I would spend a couple of nights. My family was there, but soon after I arrived the nurses kicked them out telling them to get some rest. I think the surgery was harder on them than it was on me. I had few symptons other than a "Crick" in my neck that would not go away. It took almost 6 weeks before I finally got rid of it. I do think that they should have tried harder to solve this problem which is common to many lower brain surgery patients. Perhaps heating pads, massages, or other means could be used to help.

They also had wrapped my whole head with a turbin like bandage, which was uncomfortable and hot. I was hot to start with since my roommate was always cold and the turbin just made things worse. I was having some double vision, which they said to expect.

The nurses propped me up in a sitting position and I ate some dinner -- soft stuff that didn't appeal to me that much (it was after all hospital food!) I did feel a little sick to my stomach, and they gave me something to help with that. I watched some TV, feeling proud that I was guessing the correct answers on the quiz shows. "I guess my brain is still working," I remember thinking as I answered the questions. The nurses tried to get me to go to sleep, but I was too uncomfortable to sleep. They would not let me lay flat on the bed, but made me sleep half sitting up -- they wanted to keep my head above my heart, but nobody explained that to me until the early hours of the morning. I also had a noisy roommate who was in a lot of pain and kept making noises which kept me awake. At the same time, he seemed hyper sensitive and would complain through his parents if I had the sound on the TV too high. I did listen to some CD's using ear phones. I wonder why the hospital could not have an earphones compatible outlet on the bed? Eventually the nurse gave me some morphine which helped me with the neck pain and to get some sleep.

The first day after the surgery, I ask to have the urinary cathitor removed and was able to sit up and spend part of my time in a chair. Food was looking better, but I still ate lightly. I was able to go to the bathroom, and by evening was wandering the halls with my wife in tow. I has some numbness in my face which was predicted before the surgery, but it was manageable -- much like a shot of novacaine after dental work. The next morning, they took the bandages off my head then released me from the hospital. I was back at the hotel room with my wife by noon. We had decided to spend the first night at the hotel rather than try to make the drive home the same day I was released. We ate at the hospital dinning room (better than patient food) and also got food from the hotel restaurant.

I still had double vision the next morning when we drove 4 hours back home. At first it bothered me and I tired to cover one eye or the other to stop it, but then I realized how much fun it was to see cars driving through semi trucks and other optical illusions associated with the double vision. The double vision lasted to some extend for a couple more days, and I sometimes would wear an eye patch which made reading or watching TV more enjoyable.

The fourth day after the surgery, I was feeling well enough to go out to dinner, and the fifth day, I was up to doing a couple of little odd jobs around the house. My wife and I went to the building supply store where I got some new locks we had wanted to put on for some time, and I completed the job in short order. I was still somewhat tired but my medications had been immediately reduced to 1/2 of what I had been taking before, and over the next month or so, reduced to no medications for the TN.

A week after going to the hospital, I was able to return to work on the same 6-8 hours a day schedule I had been on previously. Everyone said I looked good, and maybe I did, but I know I was more alert and able to concentrate better.

It has been 7 months now since the surgery. I still have some numbness, and still tire easilly if very active, but have no other side-effect and no TN pain. I am back on a more or less normal sleep-wake schedule, am able to eat normally, and am basically enjoying life again. I have been told that the numbness may never go away entirely, but being numb is not as bad as putting up with the trigeminal pains.

Scott