It Was Just A Little Brain Surgery
It was late October 1999. The weather was just starting to get a bit chilly. My friend Becca and I were driving back from her sister’s apartment in Oro Valley. We were about to make a left hand turn to take the back roads home. I remember accelerating. Then the next thing I remember is having my foot jammed on the gas and the car being imbedded in a mound of dirt in a construction site that just moments before, had been in front of us. I was a bit confused and had no recollection of what just happened.
After making sure Becca was okay, I asked her what had happened. She told me I had gotten a dazed look on my face and accelerated but never turned the steering wheel to make my turn. We called her father so he could use his truck and a tow strap to pull my car out of the dirt. Becca hardly said a word to me and kept looking at me strangely. I was too embarrassed and worried about potential damage to my car to think about what her behavior meant or what had really happened. I just wanted to get home.
The next day I knew I had to see a doctor. I had somehow lost consciousness long enough to wreck my car. Thankfully there was no real damage to the car but I had no idea what these events could mean. Since I didn’t have a regular doctor, I began called various physicians, asking if they accepted my insurance and if they were taking new patients. After several calls, I came across Dr. Suzie Chi-Parks. Her office advised me she was, in fact, taking new patients. After describing my situation, they made an appointment for the next day.
Later that night Becca came over. After asking me about the car and making small talk, she told me she needed to tell me something. She said after I wrecked the car, I had said some “weird” things. I had no idea what she was talking about. I still couldn’t remember anything about the accident. She finally told me that right after we wrecked, I had told her that “the bad man” made me do it. At first I laughed. I thought she was kidding. Who would say something so ridiculous? I quickly realized she was serious. That was why she had been acting so strange around me after the accident. Now I was not only more embarrassed, but I was growing very worried. I didn’t like not remembering things I had done or said.
The next day was my doctor’s appointment. After again detailing everything that happened, my doctor told me she would have to do some tests, but that she thought she knew what was going on. She told me there was a good chance that I had suffered a partial complex seizure and that I was more than likely epileptic. She made an appointment for an EEG or Electroencephalogram for the following week. She explained this would confirm if I had had a seizure or not. She prescribed me a medication called Dilantin and ordered some blood samples. She told me to keep her informed if I had any more episodes that could be seizures.
During the next month, everything deteriorated quickly. The EEG came back positive for seizures. I began having multiple seizures daily. I went back to the doctor several times a week to have my blood drawn. Since the number of seizures per day was increasing rapidly, so was the amount of medication prescribed to me. The Dilantin made me so tired and lethargic. All I wanted to do was sleep. I quickly gained 20 lbs over the next month. It was depressing to think that I was going to have to deal with this for the rest of my life. My doctor had assured me that we would eventually find the right amount of medication and get some control over the seizures, but I was losing hope fast. Things seemed to only be getting worse with no hope of slowing down. I couldn’t drive and had to be dropped off everywhere. I was a full time student but barely had the energy for school anymore. Each day was filled with embarrassing episodes of me having a seizure, making odd statements and looking dazed. It was hard to even go out in public after awhile.
My doctor had told me during the first week of treatment that I would need an MRI or magnetic resonance imaging scan just to make sure there was nothing else causing the seizures. However there was currently a waiting list. Mid-December Dr. Chi-Parks called. She was concerned my seizures were happening so frequently despite the high dose of medication I was on. She had a colleague who owed her a favor at University Medical Center. Her colleague agreed to get me in for an MRI sooner than expected. My appointment was for the last week in December. I just saw it as another formality. At least it was during Winter Break at school.
The house phone rang on New Year’s Eve at about 4:30pm. I was surprised that my doctor was calling me. She stated the MRI had shown an abnormal mass on the left temporal lobe of my brain. She said a neurosurgeon from UMC would call me the next day. I am not sure what I had expected her to tell me but it definitely wasn’t this. I was in shock. I dropped the phone, started crying and went for a walk to compose myself. I was 19 years old and had a brain tumor.
By the time I had gotten back from my walk, the shock had worn off. So they wanted to cut into my brain? That’s ok, I would deal with it, just like I had dealt with everything that had come my way before now. When I got to the house, my mother was outside talking with Becca’s mother, who was also our next door neighbor. Apparently she had picked up the phone after I dropped it and my doctor had filled her in. To her credit, I get much of my survivor attitude from my mother. She had lost my father to brain injuries he suffered in a motorcycle accident while working undercover with the Sheriff’s Department when I was only 5 years old. She approached this situation much as she had approached life in general since that day. She told me we would take it a day at a time and figure it out.
The Neurosurgeon, Dr. Weinand called me on New Year’s Day. He was very blunt and direct. He told me he was one of the best in his field. He said he had a cancellation on January 4th, and offered to give me the appointment but I had to let him know right then. I asked him if there was a chance the seizures would go away once the brain tumor was removed. He told me there was a chance. He advised me he couldn’t be sure whether I would need chemotherapy or radiation until after the tumor was removed and they were able to confirm whether it was cancerous or not. Even though I had no time to research Dr. Weinand, his training, or his past surgeries, I decided he had to be extremely confident for a reason and told him to “count me in”. In a span of 5 days I went from believing I was epileptic, to finding out I had a brain tumor, to having a craniotomy. I filled those few days before surgery convincing myself that I would be seizure free after the craniotomy. The possibility excited me and kept me from being scared. That is until I was signing the release paperwork the day before surgery, promising my family wouldn’t sue the hospital should I die on the operating table. Talk about a lot for a 19 year old to handle!
My brain surgery took about six and a half hours. The tumor removed was one inch by three quarters of an inch in size. I looked ridiculous with half my hair shaved off and 52 staples in my head. I had a constant headache for the first 3 months after surgery. But I was happy. My tumor was benign or non-cancerous. Dr. Weinand didn’t feel I would benefit from chemotherapy or radiation at this time. I returned to school as soon as winter break was over, against doctor’s orders, since I was tired of laying around at home. I was told to stay on my anti-seizure medication for 2 months after surgery. At this time another EEG was performed and it was determined my last seizure had been the day prior to surgery. I was given the option to get off Dilantin. However I was told if I had another seizure, it would be 3 months before I could drive again. I choose to stop taking the medicine as soon as they offered me the chance. I am proud to say I have remained seizure free ever since. I obtain a new MRI scan every 3 years to make sure the tumor hasn’t returned. I was told the type of tumor I had, a polycytic astrocytoma is known to come back and each time it does, it’s usually more cancerous. I am not too worried about this possibility. I refuse to ever live my life in fear or dwelling on “what if”.
I find two things troubling about my story. The first is that I had complained of chronic headaches ever since I was a little kid. When I was very young they told me it was sinus pressure. As I became a teenager, they told me I suffered from migraines. None of my doctor ever did an MRI to make sure it wasn't something else. They could have prevented so much drama in my life by doing so. Now the most troubling part of this story for me is that despite all I have overcome, despite how lucky I was, I am still dealing with repercussions of having a brain tumor. The military refuses to enlist me due to a history of seizures. I have been discriminated against in various career fields as well. My last seizure, as well as my brain surgery occurred almost 11 years ago. Yet, I am still punished for something beyond my control. But I know what I was put here on Earth to do and nothing, not even a little brain surgery will hold me back.
After making sure Becca was okay, I asked her what had happened. She told me I had gotten a dazed look on my face and accelerated but never turned the steering wheel to make my turn. We called her father so he could use his truck and a tow strap to pull my car out of the dirt. Becca hardly said a word to me and kept looking at me strangely. I was too embarrassed and worried about potential damage to my car to think about what her behavior meant or what had really happened. I just wanted to get home.
The next day I knew I had to see a doctor. I had somehow lost consciousness long enough to wreck my car. Thankfully there was no real damage to the car but I had no idea what these events could mean. Since I didn’t have a regular doctor, I began called various physicians, asking if they accepted my insurance and if they were taking new patients. After several calls, I came across Dr. Suzie Chi-Parks. Her office advised me she was, in fact, taking new patients. After describing my situation, they made an appointment for the next day.
Later that night Becca came over. After asking me about the car and making small talk, she told me she needed to tell me something. She said after I wrecked the car, I had said some “weird” things. I had no idea what she was talking about. I still couldn’t remember anything about the accident. She finally told me that right after we wrecked, I had told her that “the bad man” made me do it. At first I laughed. I thought she was kidding. Who would say something so ridiculous? I quickly realized she was serious. That was why she had been acting so strange around me after the accident. Now I was not only more embarrassed, but I was growing very worried. I didn’t like not remembering things I had done or said.
The next day was my doctor’s appointment. After again detailing everything that happened, my doctor told me she would have to do some tests, but that she thought she knew what was going on. She told me there was a good chance that I had suffered a partial complex seizure and that I was more than likely epileptic. She made an appointment for an EEG or Electroencephalogram for the following week. She explained this would confirm if I had had a seizure or not. She prescribed me a medication called Dilantin and ordered some blood samples. She told me to keep her informed if I had any more episodes that could be seizures.
During the next month, everything deteriorated quickly. The EEG came back positive for seizures. I began having multiple seizures daily. I went back to the doctor several times a week to have my blood drawn. Since the number of seizures per day was increasing rapidly, so was the amount of medication prescribed to me. The Dilantin made me so tired and lethargic. All I wanted to do was sleep. I quickly gained 20 lbs over the next month. It was depressing to think that I was going to have to deal with this for the rest of my life. My doctor had assured me that we would eventually find the right amount of medication and get some control over the seizures, but I was losing hope fast. Things seemed to only be getting worse with no hope of slowing down. I couldn’t drive and had to be dropped off everywhere. I was a full time student but barely had the energy for school anymore. Each day was filled with embarrassing episodes of me having a seizure, making odd statements and looking dazed. It was hard to even go out in public after awhile.
My doctor had told me during the first week of treatment that I would need an MRI or magnetic resonance imaging scan just to make sure there was nothing else causing the seizures. However there was currently a waiting list. Mid-December Dr. Chi-Parks called. She was concerned my seizures were happening so frequently despite the high dose of medication I was on. She had a colleague who owed her a favor at University Medical Center. Her colleague agreed to get me in for an MRI sooner than expected. My appointment was for the last week in December. I just saw it as another formality. At least it was during Winter Break at school.
The house phone rang on New Year’s Eve at about 4:30pm. I was surprised that my doctor was calling me. She stated the MRI had shown an abnormal mass on the left temporal lobe of my brain. She said a neurosurgeon from UMC would call me the next day. I am not sure what I had expected her to tell me but it definitely wasn’t this. I was in shock. I dropped the phone, started crying and went for a walk to compose myself. I was 19 years old and had a brain tumor.
By the time I had gotten back from my walk, the shock had worn off. So they wanted to cut into my brain? That’s ok, I would deal with it, just like I had dealt with everything that had come my way before now. When I got to the house, my mother was outside talking with Becca’s mother, who was also our next door neighbor. Apparently she had picked up the phone after I dropped it and my doctor had filled her in. To her credit, I get much of my survivor attitude from my mother. She had lost my father to brain injuries he suffered in a motorcycle accident while working undercover with the Sheriff’s Department when I was only 5 years old. She approached this situation much as she had approached life in general since that day. She told me we would take it a day at a time and figure it out.
The Neurosurgeon, Dr. Weinand called me on New Year’s Day. He was very blunt and direct. He told me he was one of the best in his field. He said he had a cancellation on January 4th, and offered to give me the appointment but I had to let him know right then. I asked him if there was a chance the seizures would go away once the brain tumor was removed. He told me there was a chance. He advised me he couldn’t be sure whether I would need chemotherapy or radiation until after the tumor was removed and they were able to confirm whether it was cancerous or not. Even though I had no time to research Dr. Weinand, his training, or his past surgeries, I decided he had to be extremely confident for a reason and told him to “count me in”. In a span of 5 days I went from believing I was epileptic, to finding out I had a brain tumor, to having a craniotomy. I filled those few days before surgery convincing myself that I would be seizure free after the craniotomy. The possibility excited me and kept me from being scared. That is until I was signing the release paperwork the day before surgery, promising my family wouldn’t sue the hospital should I die on the operating table. Talk about a lot for a 19 year old to handle!
My brain surgery took about six and a half hours. The tumor removed was one inch by three quarters of an inch in size. I looked ridiculous with half my hair shaved off and 52 staples in my head. I had a constant headache for the first 3 months after surgery. But I was happy. My tumor was benign or non-cancerous. Dr. Weinand didn’t feel I would benefit from chemotherapy or radiation at this time. I returned to school as soon as winter break was over, against doctor’s orders, since I was tired of laying around at home. I was told to stay on my anti-seizure medication for 2 months after surgery. At this time another EEG was performed and it was determined my last seizure had been the day prior to surgery. I was given the option to get off Dilantin. However I was told if I had another seizure, it would be 3 months before I could drive again. I choose to stop taking the medicine as soon as they offered me the chance. I am proud to say I have remained seizure free ever since. I obtain a new MRI scan every 3 years to make sure the tumor hasn’t returned. I was told the type of tumor I had, a polycytic astrocytoma is known to come back and each time it does, it’s usually more cancerous. I am not too worried about this possibility. I refuse to ever live my life in fear or dwelling on “what if”.
I find two things troubling about my story. The first is that I had complained of chronic headaches ever since I was a little kid. When I was very young they told me it was sinus pressure. As I became a teenager, they told me I suffered from migraines. None of my doctor ever did an MRI to make sure it wasn't something else. They could have prevented so much drama in my life by doing so. Now the most troubling part of this story for me is that despite all I have overcome, despite how lucky I was, I am still dealing with repercussions of having a brain tumor. The military refuses to enlist me due to a history of seizures. I have been discriminated against in various career fields as well. My last seizure, as well as my brain surgery occurred almost 11 years ago. Yet, I am still punished for something beyond my control. But I know what I was put here on Earth to do and nothing, not even a little brain surgery will hold me back.
