Well, I had a Neuro-Psych eval a few months prior to surgery, when I had been off medication for about 2 months. About 15 months after surgery I had the follow up evaluation. I got the results last week.  

The main highlights are: 

My overall I.Q. increased slightly - we suspect this is due to not having interference from seizure activity.

My problem solving went down 0.5 Standard Deviations, but is still above average.

My visual memory went down 1.5 Standard Deviations, and is now near the low end of normal.  

The fact that my visual memory declined so sharply is not surprising, given the fact that I have markedly increased prosopagnosia compared to before surgery. I can learn new faces to an extent, but it is much more difficult. I also can't just picture somebody's face at will. For most people, all I can visualize is a the corner of the mouth with a small amount of cheek, and/or an eyebrow with some forehead. At times I've noticed a more complete face, and they nearly always are smiling. That being the case, I try to picture people smiling when trying to recall a face. Has anybody else noticed such a connection? If you have prosopagnosia perhaps you can try picturing people smiling and see if it helps.

So, I had my annual MRI and then visited with the neurosurgeon the other day. He told me I was doing so well that I don't need an annual MRI, I only need one every two years for right now. He said they still are unsure what caused the abnormal cells in my brain, but that the worst case scenario was that they were a slow-growing, pre-cancerous bunch of cells. The types he referred to he said take about 15 years to recur generally. He said if I start having a bunch of seizures I need to get checked out, but otherwise not to worry. He pointed out rather nonchalantly that if that area starts to grow or become a problem, he could go back and take twice as much out as last time - and that I would probably not notice any problems and would be back to work right away. Seems funny to me that he talks about brain surgery like it's no big deal. Great news though. I'm really happy to be so much more active and not on any medication. Hadn't been like this for years prior to right medial temporal lobectomy.

Back in high school I remember so many people saying they were bad with names, but they never would forget a face. I thought, hmm wouldn't that be nice to remember faces so easily. When I was younger I think I remembered them more easily, but as I got older I had more and more problems remembering faces. After my surgery I noticed the problem was much worse than before. People I had known for several months, I could still recognize. People that I had known only a couple weeks before surgery, or anytime after the surgery, I could not recognize. I am good with voices, so I would quickly memorize a person's voice and use that to help recognize a person. I also make an effort to remember a person's body type and height, hair color, and things like that to help me remember them.

So many people's faces just look the same to me, until I know them for several months. It turns out that there is an area called the fusiform gyrus in the temporal lobes of the brain. Since my right medial temporal lobe was removed with the lobectomy (to correct seizures), I am missing the right fusiform gyrus. Somehow I am still able to learn faces, it just takes a really long time. Another difference is that I can't mentally picture a face. I remember as a child being able to picture a face whenever I wished, but I no longer have that ability. So, for example, I recognize my wife when I see her, but am unable to visualize her face even though we have been married for several years. 

Anybody out there have experience with facial blindness? Post a comment about it.

Yesterday as I was driving down the interstate, during my commute home.  I suddenly smelled a very strong odor.  It was the smell of something electrical getting very hot - like it was burning.  This is a type of aura that I sometimes had in the past when I was getting close to having seizures.  That type of aura is known as an olfactory hallucination.  (It's a smell that isn't really there.)  The smell was very strong this time.  I was nervous.  I didn't know why I was experiencing this smell - I had been well-hydrated and had been sleeping well too.  

Then the radio quit working.  What a relief!  It wasn't just in my brain, it was actually something electrical getting very hot.  Brought back memories of seizures, but luckily, this was just the real smell.  I guess I'll have to get used to really smelling things now.

Happy 4th of July everyone.  I'm especially grateful to all who have served our great country in the armed services.  Thank-you for your service!

Things are still going great post-surgery.  It's been over 6 months now.  Still no seizures, so I am hopeful that I may never have them again.  The other day I worked in an area of the hospital that required me to wear an OR cap.  For those that don't know what that is, it's the blue cap that looks almost like a hair net.  It's held on by a small elastic band.  Wearing it gave me a headache, even though it's a very small, weak elastic band.  Strange how such a small amount of pressure can affect the area my skull was cut open.  It wasn't the worst headache in the world, so no big deal really.  The occasional small headache is much better than the frequent seizures I was having before brain surgery.

Here's the latest on my seizures and brain surgery:
I've started jogging the last couple weeks.  The most I've done was about 17 minutes, but it's a start.  After all, I hadn't been jogging in nearly 2 years.  It feels good to have the energy to do aerobic exercise and not wonder if I'll end up getting a seizure from it.  I only got a small headache on one run.  Other than that the headaches are nearly gone.  It seems I can go a week or so without a headache and then I'll get a few during the day.  The good thing is that they usually last from just a few seconds to a couple minutes.  The headaches that lasted several hours don't seem to have been around for awhile.  Of course, I am remaining seizure free.  I am very happy with the outcome of my right medial temporal lobectomy.

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?

My seizures continued without much change for several years.  They had started in 2005.  I was told that one EEG showed left parietal lobe activity.  No other EEG's ever showed seizure activity.  In 2009, following an MRI at the VA Medical Center in Salt Lake City, Utah, I was told that there was a "spot" on my brain they were watching.  Not one that's easily excited or prone to worry about medical problems, I didn't think much of it.  In fact, I didn't even tell my wife.  A doctor had also correctly (as I would later learn) hypothesized that my seizures were temporal lobe in nature, rather than parietal lobe, based on my symptoms.

Two years later, in August 2011, at the VA Medical Center in Kansas City, Missouri I was told that I had an astrocytoma.  I wasn't even sure what an astrocytoma was, just that it must have to do with the brain cells known as astrocytes.  I was told after an EEG that there was some slowing seen in that same area as the astrocytoma, the right medial temporal lobe.  I was told that the astrocytoma hadn't grown in 2 years.  I asked how they knew.  The doctors said they looked at my scan from 2 years earlier and it was the same size.  A little frustrated I told them I was told it was a "spot" that they were watching, not an astrocytoma.  The neurologist sent me to see a neurosurgeon.  

I was told by the neurosurgeon that since this spot hadn't grown he thought is wasn't likely to be an astrocytoma, but more likely some type of lesion or scar tissue that I was born with.  He told me that I couldn't drive.  I reminded him that I had never had a grand-mal seizure or loss of consciousness during any of my seizures.  He pointed out that the frequency of my seizures had increased the last several months.  He also said that due to the location of concern in my brain, the seizures could easily spread and become generalized seizures.  In the end I quit my job as I lived 42.5 miles from work and there was not bus route.  We then moved from Kansas to Idaho and later to Salt Lake City, Utah so that I could have a job that I could get to without driving.  An MRI-Spectroscopy was ordered.  I was told that they would know for sure if this was an astrocytoma based on the results of this test.  By the time we got the results, we had already moved.  The doctor called and told my wife that he was very sorry, but I did indeed have an astrocytoma.

I began seeing doctors at the Salt Lake City, Utah VA Medical Center again.  An attempt was made to better control the seizures by changing medications.  They began by adding Topamax (topiramate) to my current regimen of Keppra (levetiracetam) and Trileptal (oxcarbazepine).  At first I was a little less drowsy during the day.  I think this may be due to a small dose of the medication controlling seizures at night.  Eventually I was again at least as drowsy as I had been before.  As they increased the Topamax, I was tapered off of the Keppra.  I experienced neuropathy in my feet, and tingling in my hands and forearms when pushing shopping carts.  My seizures intensified and became more frequent during adjustments of my medication.  I sometimes woke at night with a tingling sensation around my lips, which spread to my nose and left face.  I would then wake every 2-3 hours during the night with seizures.  This was the most frequent they had ever been.  I was referred to the University of Utah in May of 2012.

I saw a neurosurgeon at the University of Utah.  He did not seem to think that I had an astrocytoma, but his office lost the copy of the MRI-Spectroscopy I left for him to review prior to the appointment.  He ordered a long-term video monitoring EEG.  For that test, I spent 8 days in the hospital connected to EEG wires.  My head got sores from the pressure of the wires on my scalp. They tried many tricks to get me to have seizures, including severe sleep deprivation, high amounts of caffeine intake (I usually don't drink any caffeine), reducing and then stopping my medications.  I only had a handful of seizures while in the hospital.  What was worse, they didn't see any seizure activity on the monitors.  Each time I had a seizure I had to press a button.  I sounded about as urgent as a fire alarm and several people would come running in the room.  It's kind of embarrassing, when you are awake for your seizures to have so many people come in as if it's some emergency.  After I got out of the hospital other tests were ordered.

I had another MRI.  They requested another MRI-spectroscopy, but I told them I didn't see the point, since I had one less than a year prior.  They ordered a PET scan.  I read the result of that and it said I had signs of early dementia.  They ordered an MEG scan.  They ordered Neuro-psychological testing.  Tests, tests and more tests.  They wanted me to get video monitoring again with sphenoid electrodes placed nearly on my brain by placing needles in through my temples.  I told them I didn't want to do that.  I'm sure some of the doctors have gotten tired of dealing with me, but I'm tired of just doing tests.

If this really is an Astrocytoma, why is it taking so long to do surgery?  If it isn't then I'm not so sure I want a chunk of my brain removed.  On one hand they have told me that it is very safe.  On the other hand one doctor said she couldn't guarantee the surgery would have no adverse effects since I also play musical instruments and have seen the effects of medication on my playing.  At the current time, I have not gone back on my medications.  I have more seizures than I had in the past, but they are not more intense.  I'm unable to drive, which sometimes makes me feel like a junior high kid again.  I have an appointment with the neurosurgeon again this week and we'll see what that brings.

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.