Standing in the kitchen of his family’s farmhouse, Paul Herzog had an experience that would end up defining much of his life.
“I was standing in front of the stove, looking at the spice rack,” Paul recalls. “I could not make out the wording on the spices. That was the first seizure I remember.”
This small, seemingly insignificant event happened in 1979, when Paul was in high school. It would be years, though, before a diagnosis of epilepsy would be made. During that time, the severity of Paul’s seizures—and their impact on his life—would increase in intensity.
Paul started blacking out during his seizures and would awake to find that he had vomited with such force that it had broken blood vessels in his face. “I would come to and there would be vomit, but I wouldn’t remember anything,” Paul says.
Even a small seizure which he had in front of the high school nurse did not lead to a diagnosis. Paul was having a standard eye test when the seizure hit. He told the nurse that he could not make out the letters.
“It never dawned on her that I might have a problem,” Paul says. “She thought there was something wrong with her machine!”
For Paul, the idea that he might have a neurological disorder like epilepsy was far from his mind. He associated epilepsy with grand mal seizures, something he was certain he had never experienced. Years after his first small seizure, though, Paul would finally have an episode that provided the clues that both he and his doctors needed.
“I had a friend over at my apartment, and I was lying down watching TV,” Paul recalls. “I thought I had just passed out on the couch. But when I woke up, I was in the hospital.”
Paul’s friend had witnessed a grand mal seizure and called an ambulance. With the information gleaned from this episode, Paul and his doctors were able to start putting the pieces together.
When Paul awoke in the hospital, he felt a strange sensation—the aftereffects of the grand mal seizure.
“I realized that I had had these before,” says Paul. “But no one had been around to see it.”
It was now certain that Paul had epilepsy. Unfortunately, he still faced a long and challenging road.
In 1993, Paul was referred to the Strong Epilepsy Center. On three separate occasions, Paul would be hospitalized for about a week while doctors and technologists performed EEG examinations in an attempt to locate the source of his seizures.
The EEG, or electroencephalogram, traced out a series of lines that corresponded to different parts of Paul’s brain. His first two tests recorded seizures, but did not show precisely where they started—even when the EEG electrodes were placed directly on his brain. Finally, when the test was done a third time, the source of Paul’s seizures became apparent.
Dr. Giuseppe Erba, Paul’s neurologist and one of the founders of the Strong Epilepsy Center, told Paul that they had found a very small spot on his brain. Dr. Erba called it an interior birth mark. This birth mark had caused scar tissue to form on his brain which led to his seizures.
Unfortunately, because of its location, the birth mark could not be safely removed by surgery: The tiny abnormality was in Paul’s right temporal lobe, where short term memory functions are located. (This helped explain why, when Paul had a seizure, he would have no memory of it.) Doctors were concerned about surgery’s possible effect on Paul’s memory as well as on his motor and speech abilities. Paul is left-handed, meaning that the right side of his brain is dominant and controls his language.
With no surgical solution, Paul’s epilepsy had to be treated with medications. For the most part, they proved ineffective. At times, he would have a flurry of seizures over the course of three or four days, an experience that would leave him feeling like his brain was shutting down.
“One time, I was walking to my job at Wegmans,” Paul recalls. “The next thing I knew, I was on the other side of the street and walking back home. I had no recollection of how I got there.”
“I should have just continued walking home,” Paul says. “Because there were more seizures the rest of the day.”
Paul gave up driving and even bike-riding because of the constant threat of a seizure. Then, about two years ago, Paul received an unexpected call from Dr. Erba. “He told me about a new procedure that was still in the experimental stage,” Paul says. “It sounded like it could be a breakthrough. I said, ‘Where do I sign?’”
Paul spent the next several months carefully documenting his seizures in order to qualify for the clinical trial. After that process was finished, Paul had a device called the NeuroPace Responsive Neurostimulator implanted in his skull. Wires that extended from the device were implanted into the seizure focus in Paul’s brain to constantly monitor the electrical activity. When the start of a seizure is detected, a small, imperceptible shock “resets” his brain before any seizure symptoms arise.
Since this was a clinical trial, Paul didn’t know if the device was turned on or remained off for the first four months. But thereafter, Paul was informed that the device was now officially “on”. He noticed a difference almost immediately. “I saw considerable improvements,” Paul says. “I started experiencing fewer seizures, and the ones I had were less severe. I would no longer lose consciousness. And if I did have a seizure I would remember things and be aware of what was going on.”
Paul continued to take his medications, as the device was designed to work along with them. After years of difficulty, though, all the pieces of an effective treatment plan seemed to finally be in place.
The benefits to Paul seemed to increase the longer he lived with the NeuroPace device. “The more time I went with fewer seizures, the more confident I felt,” he says. “A lot of people have commented on how there’s been a whole change in my disposition,” Paul relates. “Many of my co-workers have commented on how my work has improved.”
With the drastic improvements in his health, Paul has been able to enjoy more aspects of life, including woodworking. He recently built his 20-year-old son a corner desk that Paul designed himself. Another is being planned for his 15-year-old daughter.
“I love the Epilepsy Center,” says Paul. “They’ve been very good in dealing with me and all my problems. I’m very pleased.”
“I’m just a lot better, a lot better,” Paul continues. “I ran into a friend of mine the other day. He said my whole demeanor was different, that I was so much more uplifted. It was good to hear that.”
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