By Brooke Holley
You can feel pressure behind your eyes and in your temples. The familiar butterflies are in your stomach and the prickly feeling on your skin begins. You begin to panic, immediately recognizing the signs of an upcoming seizure. Trying to keep yourself from going into it, you look for patterns on the floor or ceiling or maybe even your clothing; it doesn't matter what. You need something. This pattern could send you over the edge into a seizure, the very thing you're hoping to avoid, or it could keep you from having one. You don't know but you always hope for the best.
Sound familiar? Probably not. Only those with photosensitive epilepsy would be able to relate, and even if you were photosensitive, you would need to be able to sense your seizures; both of those qualities are extremely rare. Photosensitive epilepsy, that is seizures triggered by visual stimuli such as flashing lights or patterns, makes up only one to five percent of the 65 million epileptics in the world.
Although you may not relate, I certainly could. I was diagnosed with epilepsy at the age of three. To obtain that diagnosis, I had to have at least two seizures with no known cause. Unfortunately, that means you have to rule out all other possibilities. I was forced to undergo two spinal taps without anesthesia and numerous other painful procedures at that young age.
With the diagnosis came an overload of information. Some information gave us hope; like how most children diagnosed with epilepsy outgrew their seizures once they got to puberty. They no longer had to take any sort of medication and carried out normal lives. This was because the hormones introduced during puberty changed the chemistry of the brain and stopped the seizures completely.
Unfortunately, we came to find out that a very small portion of children weren’t so lucky. In the children who didn’t outgrow their epilepsy at puberty, their seizures took a different turn. Instead of outgrowing them, they worsened dramatically. The hormones aggravated the epilepsy and their seizures became severe and sometimes even uncontrollable.
After I was diagnosed with epilepsy, they put me on medication to control the seizures. It worked well. I was only having a seizure every other month or so. Unfortunately, at the age of eleven my seizures made that dramatic turn. That little episode I was telling you about earlier was the bane of my existence. I was living with intractable epilepsy, so my seizures were completely uncontrollable. When most epileptics lived seizure-free lives on medication, I was living on the maximum amount of medication and still having multiple seizures a day.
Most epileptics with intractable epilepsy don’t live. They usually end up dying from hitting their head, or they die from ‘going static.’ Going static basically means their brain goes into a seizure and never comes out. Eventually, their brain gets fried from the overloading amount of electrical impulses going through it, and they die.
I was living with this. Taking the maximum amount of medicine I possibly could without my liver shutting down didn’t make a bit of difference. I was still having multiple seizures a day. It was then that the doctors told me I had a five percent chance of survival. There was no other option.
I had to have brain surgery.
But, my mother didn’t agree. My stepfather at the time, a horrible man, could have told her the sky was white and she would have believed him. Unfortunately for me, he managed to convince her that I was only having seizures because I was eating too much pasta. Though it is true that children with epilepsy can have improvements from cutting certain foods such as pasta out of their diet, I was too far gone for that to have any impact on my seizures.
My father on the other hand, was convinced that my surgery would ‘fix’ me. He thought it would cure my epilepsy. My mother would have nothing to do with the surgery. So, he took my mother to court. He won.
In early April of 2009 we drove the four hours to Denver, CO. We checked into The Children's Hospital and I was on my way into surgery.
My parents and I were asked a lot of questions, most of which I don’t remember. All I remember is thinking how pointless most of those questions were and how I just wanted this day to be over. The surgeon wasn’t even asking me the questions, only my parents. That was annoying me to no end.
They used sharpie to mark which side of my head they would be operating on, which seriously worried me. I mean, did they not know for sure?
Soon enough, I picked my flavor of anesthesia and we were on our way into surgery. Dr. Handler, my surgeon, talked to my parents for a few minutes as I laid down and got comfortable.
Then, my parents stood next to me telling me how much they loved me as the anesthesia was slowly being increased. The surgeon was also telling me a story as I went under, something about boats. It was nice and strangely comforting.
That surgery lasted for eight hours, I believe. They placed 82 electrodes on the surface of my brain. The purpose for which was to see where my seizures were originating from. They had a vague idea, but you couldn’t remove someone’s brain with only a vague idea of what to take.
My mother told me after I came out of the first surgery they wheeled me into the ICU and she and my Nana were waiting for someone to come plug in the cords. It was then that I had a huge seizure. She refuses to tell me what exactly that seizure was like, though. All she’ll say is that she had never seen me seize like that before, a look of horror decorating her face as she recalls it.
But, because I wasn’t plugged in, The electrodes didn’t record any of it. We had to wait for a seizure to occur while they were actually recording information.
We waited a few days and I didn’t have any seizures. The doctors started weaning me off of my medicine.
I don’t remember much about the time after the first surgery and between the second. I remember the ponytail of colorful cords that was protruding from my skull. They were attached to the electrodes on my brain and made it excessively difficult to move or walk around.
I also remember being extremely sick. I was allergic to the type of anesthesia they gave me, which had been pumped into my system for about eight hours. So, I was horribly, horribly sick.
We had to wait two weeks for another seizure. It was absolutely miserable. My head was leaking from where the cords were. We have no idea what the fluid was, but we decided to call it brain ooze. It smelled absolutely disgusting.
One thing I did like about my epilepsy, though, was the fact that I had some control over my seizures. I could look at my brain waves on the screen and induce a tiny seizure to make the brain waves on the screen spike. It was awesome and great entertainment if I couldn’t find anything better to do.
After I finally had another seizure, they simply wouldn’t stop. I wasn’t too worried, though. I was used to having seizures. The only thing I was worried about was yanking on my ponytail of cords.
After the neurologists were confident that they’d mapped out the area my seizures were coming from, they began testing. They came in and began testing the area they needed to remove. They had to be sure that the parts they were going to remove weren’t controlling vital functions.
The doctors would send electrical impulses through the electrodes to the various areas of my brain to see what they did. I remember my arm and leg twitching as they did this. It scared me, so they stopped and never did finish it.
They figured out that the parts of my brain that they needed to remove weren’t any major areas. So, on April 29th we went back in for the second surgery. During this surgery, the surgeon had to remove the 82 electrodes and then the area of my brain that was causing the seizures.
During the surgery, I had a grand mal seizure, which is the kind that sends the body into full blown convulsions. Luckily, it didn’t disturb them in any serious way, and the surgery continued after the seizure ended.
It wasn’t until my surgeon noticed that part of my brain was deformed that he had to halt the entire surgery to talk to my parents.
“If I don’t remove the deformed part, there’s chance she’ll still have seizures even after recovery,” Dr. Handler told my parents. Of course, my parents told him to remove it. They didn’t want to risk it. Eleven hours later, I was coming out of the surgery.
I for one am so grateful that I don’t remember waking up from either of the surgeries, but especially the last one. I awoke paralyzed on the left side of my body and 45% blind.
I didn’t notice the missing vision at first, but the paralysis I definitely noticed. I was terrified and my parents were panicking. They immediately took me in for a CAT scan. They said that it was likely I would get the function of my left side and my eyesight back with time.
I hated wheelchairs. When I went in for the surgery I was an active kid. I was always outside playing and running races. Suddenly, I was unable to walk or even use the toilet by myself. Of course, I became extremely depressed. I managed to make it through, though.
A few weeks later I regained the function of my hand and arm. It took nearly twice as long to get my leg back. I began occupational therapy and physical therapy in the hospital. I made it my goal to walk out of that hospital and I did. I walked with a walker, but I walked out after two months of hell.