Before Brain Surgery side view.

Before Brain Surgery Front View

After Brain Surgery, head dressing.

After Brain Surgery, head dressing.

After Brain Surgery, head dressing

After Surgery, Side View without bandage.  I'm thinking the scar will start to look more defined with time.  I'm considering growing a beard and having it longer than the hair on my head.  The neurosurgeon said he put two small plates in my head.  I was upset to learn that they aren't magnetic.  I was thinking of neat tricks I could show my kids if the plates were magnetic.

After Surgery, Front View without bandage.  The black eye is from blood pooling.  It's funny to say that my wife beats me though.  The mark in the front of my forehead is from a brace that held my head still during surgery.  There are 2 more such marks on the back of my head.

Maybe I forgot to mention the name of my brain surgeon.  It's Doctor House.  No joke, that's his real name.  It always makes people laugh when I tell them that.  He doesn't seem nearly as heartless or sarcastic as the t.v. character.  In fact his bedside manner and professionalism make him not at all like the t.v. character.  

We are proceeding to surgery without the WADA test.  I was wondering why that is and I asked my neurosurgeon's nurse practitioner.  She told me it isn't necessary since they already know exactly where they are going in my brain and they won't mess with the areas that could involve speech.  The WADA test is typically done prior to brain surgeries partially to verify which side of the brain involves speech.  If the wrong areas are damaged a person could be unable to speak or even understand written or spoken words.  What a scary prospect that would be.  It is assuring knowing that they won't mess with that area, even though my speech is likely on the left and they are operating on the right side of my brain.

Being a pianist and violinist, I am wondering what affect the surgery will have on my playing abilities.  I would be interested to find other musicians that have had a right medial temporal lobectomy.  At this point I am willing to proceed to surgery even at risk of harming my musical abilities.  It just wouldn't make sense not to cut out what is likely a low grade glioma.  The risks of leaving it intact would be too great.

My family has decided to celebrate Christmas early this year, since I will get out of the hospital only a few days before Christmas and probably not in any shape to enjoy the holidays.  When I had my colectomy in 2007, I specifically waited until after the holidays to schedule surgery, but ulcerative colitis was more of a great inconvenience, and not cancerous.

I am anxious to return to work as soon as possible after surgery.  With any luck I could be seizure free the rest of my life.  Wouldn't it be nice to make more money next year than I ever have before, and not have to spend much of it on medical bills?

Not driving was no fun.  I didn't enjoy being the passenger.  A person I worked with lived nearby and so I paid him, and we car pooled.  On the days he wasn't available, my wife dropped me off at work.  When people I worked with asked why I couldn't drive, I joked that I had gotten another DUI.  This was a way for me to break the ice.  They all knew I didn't drink alcohol at all.  It was kind of embarrassing telling people I had seizures.  I was worried they might treat me different.  At the same time I wanted to be safe, so I made sure to tell my managers and other people I was around a lot; such as other Boy Scout volunteers.

Since I don't lose consciousness during my seizures, or fall, they aren't likely to be unsafe for me.  When people would ask me what they should do for me during a seizure, I would ask that there isn't a large crowd gathered around me, as that would make it more embarrassing for me.

My seizures continued from the fall of 2005 without improvement, even on Keppra (Levetiracetam).  They all started the same - with a deja vu feeling.  Their intensity varied.  Most often I was aware it was a seizure the entire time.  Only rarely did I have one with jamais vu, the opposite of deja vu.  Often during my seizures I had various hallucinations.  Some of these were gustatory or olfactory, meaning I tasted or smelled things that weren't really there.  Sometimes I even saw things that weren't there.  This was generally people, who might even talk.  These hallucinations weren't of such intensity as to seem normal or real.  It was more like a person, or group of people had just flashed through the scene and maybe said something when they were there.  I could still recall their faces during the seizure, but afterwards couldn't remember what they looked like.  During the seizure I sometimes felt like it was the same faces I would see each time.  I'm not sure if it really was, or if that was just the deja vu feeling.

I insisted my neurologist discover the reason for my seizures.  Each time he insisted it didn't matter what was causing them, but that we get them under control.  I understood the need to control them, but felt if we knew the cause that might be easier to do.  I continually argued with my neurologist and gastroenterologist about the Asacol I was taking for ulcerative colitis.  I strongly felt that it was the cause of my seizures.  They continually reassured me that such was not the case.

By January my neurologist had wanted me to take a second medication for some time.  I was reluctant to do so. I felt that one medication, Asacol, had caused my seizures and was fearful of side effects.  He finally got me to agree to add another medication if a new EEG showed seizure activity.  An EEG was scheduled in about a week and a half.  I went home and stopped taking the Asacol.  Within a few days my head felt better.  The tingling feeling was gone.  I could estimate what time it was.  I remembered people I met throughout the day.  I had the EEG.  No seizure activity was detected.  

When the neurologist reviewed the findings of the latest EEG I told him how I felt and that I had stopped taking Asacol.  He was finally convinced.  He agreed I should never take that medicine again.  My seizures decreased after stopping the Asacol, but never went away.  The intensity of my seizures also changed.  I no longer had visual hallucinations with them.  I never had the jamais vu feeling.  In addition to the Keppra, I was eventually given Trileptal (Oxcarbazepine) for seizures as well.  I immediately noticed that I felt more tired from the Trileptal.  Each time the dose was increased, I felt more tired for several days.  If I lay down I could quickly fall asleep.  After about 8.5 months of no driving, I was finally allowed to drive.

The gastroenterologist was not amused that I had stopped taking the Asacol.  He tried me on another mesalamine medication, Colazal.  After about a week my head started feeling like it had on the Asacol.  I stopped taking it and was reassured by my neurologist that that was the right thing to do.

As far as my seizure activity, not much changed the next several years.  On average I had seizures every 2-3 weeks.  I would have a few of them over about a 2 day period each time.  After I had my colon removed (see the colitis blog) I had a seizure the same day or the following day.  Then I did not have any seizures for over a month.  That was probably the largest single break in my seizure activity.

I was scheduled for an EEG, an electroencephalogram.  Preparation involved being up most of the night, the night before, since sleep deprivation lowers the seizure threshold.  The morning of the procedure we went to the hospital and checked in.  My wife and I were taken to an EEG technician to a small room where the test was to be performed.  A couple dozen electrodes were attached to my skin.  The process was painless.  To further induce sleepiness I was given chloral hydrate to drink.  This didn't taste like something you would want to drink, but it wasn't the worst tasting thing in the world either.  

I lay down on the stretcher with a pillow under my head.  This was an unusual position for me to sleep in.  I sleep on my side or belly, so as I get tired I get the impulse to roll over.  Before I was allowed to try to sleep they first did other tests.  I'm not an EEG expert, but I understand some of these tests help make sure the wires are attached and reading correctly.  I was instructed to open my eyes and close them several times.  I was instructed to hyperventilate for a couple minutes.  A strobe light was placed in front of my face.  With my eyes closed, the light flickered at various frequencies.  None of these seemed to have any real effect on me, and finally the time to sleep arrived.

It was difficult to fall asleep on command, in an unusual environment, lying on my back.  I could hear somebody vacuuming in the next room.  Is the really the quietest place Eastern Idaho Regional Medical Center had for doing EEG's?  It seemed the harder I tried to fall asleep the harder it was to fall asleep.  Finally I settled on the idea of playing Chopin piano pieces in my head.  I did this for a few minutes.  The next thing I knew, I was being told to wake up.  I said I hadn't been asleep yet.  They said I had fallen asleep, just not into a very deep sleep.  When I tried to get up I realized how powerful of an affect the chloral hydrate had on me.  I was unable to walk without assistance.  Although I tried my best to walk down the center of the hallway, I kept bumping into the walls.  My wife took me home, where I took a nap.

A few days later the doctor told me the results.  He stated that I had 3 episodes of seizure activity during the EEG in the left parietal lobe of the brain.  That sort of made sense, since my right arm did sometimes twitch during my seizures.  I was started in Keppra.  It seemed ineffective, and I didn't notice any effects from it when I first started on it.  I wouldn't notice its effects until years later when I was taken off of it.  The doses were increased on a regular basis, until I was taking the maximum dosage, 1500mg twice daily.  This took several months to accomplish, and my seizures never got better during this time period.  This was due, at least in part, to another medication I was taking.  The Asacol I was taking for Ulcerative Colitis had instigated my seizures.  It was many months before any of my doctors would agree with that statement.