Last week I had an appointment with the neurosurgeon. He went over the MRI spectroscopy and the recent MRI I had as well. He also had reviewed the results of the long term video monitoring, PET scan, and MEG test. He said he was concerned about some enhancement on the recent MRI that hadn't been seen on previous MRI's. He said that could be a sign that the tumor is growing and effecting the blood brain barrier. He said that I probably do have a low grade glioma. He explained that the most common glioma is an astrocytoma, so that is probably what I have.
He recommended that we proceed to surgery without completing the visual fields test or WADA test. A surgery date has been scheduled for the middle of December. With less than a month to go it seems there are many things yet to be done. It's also the Holiday Season
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.
Clip Holverson Jr. began having seizures at the age of 30, and was diagnosed with epilepsy. Follow this blog to read his story.