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.
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.
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