Rick’s Story: After 45 Years, He Got the Help He Needed

Rick

Rick’s strategy for managing his epilepsy wasn’t perfect, but it had worked well enough for most of his career as a theme park project manager who traveled the world. Whether he worked in Australia, Malaysia, Singapore or Germany, his routine was always the same. After arriving in a new city, he would find a local doctor, schedule a CT scan of his brain, show the doctor his previous scans, get a new prescription, and inform his co-workers that he had epilepsy. He wanted people to understand that, “If I do something weird, you’ll know what it is.”

Even with his medication, Rick would have occasional seizures, which manifested as temporary blackouts with no dramatic symptoms. Considered “high-functioning” during his seizures, Rick would stare, drifting away mentally, while continuing whatever he was doing. People noticed but shrugged if off, figuring their intensely cerebral colleague was “Rick being Rick.”

Then came the seizure that changed everything. Rick was driving home from a visit to the veterinarian in Cincinnati, his wife, Sharyn, in the back seat trying to comfort their cat, when it struck suddenly. As Sharyn desperately tried to communicate with him, Rick drove in complete silence, turning right off a highway exit ramp from the far left lane. “I drove about half a mile down the road and pulled into a parking lot, and I didn’t remember any of it,” Rick said.

He and Sharyn knew they had reached a turning point. “We knew there had to be something better,” Sharyn said. “We knew that what we were being told couldn’t possibly be right.” At the computer that day Rick searched for “epilepsy” and “Cincinnati” and found the Epilepsy Center at the University of Cincinnati Neuroscience Institute. They took the first appointment they could get with David Ficker, MD, a neurologist and the center’s Associate Director.

Sharyn told Ficker that her goal was to get Rick off his current medication, which made him “hermit-like,” and onto something new. Ficker’s goal, she continued, “was to get to the bottom of the problem. He left Rick on the medication and then did a battery of tests.”

Thus began the last phase of Rick’s 45-year coexistence with epilepsy. At the conclusion of Ficker’s testing, it was clear that Rick was a candidate for epilepsy surgery. The surgical procedure, performed by the late Hwa-shain Yeh, MD, a neurosurgeon with the Epilepsy Center, removed the source of Rick’s seizures – a benign tumor in his right temporal lobe — effectively eliminating them.

*   *   *

Rick’s experience with epilepsy began when he was a young man. He first began having undiagnosed “spells,” in the mid-1960s, while working in electronics maintenance for the Air Force in Charleston, S.C. He had regular EEGs, but was never given a diagnosis of epilepsy. “I subsequently learned that they were classic complex partial seizures,” he reflected. “I would have these sensations of muscle tension, déjà vu, and I could feel it coming on, and if I was driving, I would stop and sit there and wait until they went away, maybe for 5 to 10 minutes. If I was at home, then I was immediately sleepy afterwards, but all in all they weren’t particularly disturbing, other than no one was telling me what they were.”

A few times, while walking 6-inch-wide beams on a major roller coaster in Toronto, Rick sat down on the beams and held on. It was a dangerous way to live, but at the time no one advised Rick against it. Indeed, it was a self-care strategy that sends chills down the spines of his doctors today.

“He was lucky that he suffered no injuries while having seizures in these potentially dangerous situations,” Ficker said. “Because seizures often impact a person’s ability to respond normally, working in dangerous situations or driving should be avoided until the individual is seizure-free for a period of time.”

In 1985, while working in Australia, Rick suffered his first grand mal seizure, also known as a tonic clonic seizure. “After a particularly long, hot day and way too much wine and port at dinner, I had a grand mal seizure in the middle of the night,” he recalled. “The rescue squad came and took me to the hospital, where I had an arteriogram, and they found a mass at the base of the right hemisphere.”

A doctor told Rick that the tumor was probably causing his epilepsy but that it was inoperable. He prescribed the anti-seizure medication phenytoin, which Rick took for nearly 10 years. Over the years Rick spent time on three other medications as well and, despite multiple seizures, thrived in his demanding, globe-trotting profession. During an 18-month stint managing the early attraction construction at Ferrari World theme park, he spent at least one week a month in Abu Dhabi or Dubai.

Rick was fortunate in that he never felt the need to hide his epilepsy. “Because I traveled so much, it was important for people to know that I had epilepsy, in case anything happened while we were on the road,” he said.

Indeed, while medications had reduced his seizures, they had also taken away his ability to sense when a seizure was coming. And when the pivotal, left-lane-right-turn seizure occurred, he had no warning of what was about to happen.

Thus, after coping with epilepsy for 45 years with the help of physicians who were not epilepsy specialists, Rick finally arrived at a comprehensive epilepsy center. And this time, he would not simply go away with a prescription.

*   *   *

Undergoing tests with Ficker meant spending time as an inpatient in the Epilepsy Monitoring Unit, or EMU.

“They hooked me up to 25 wires and a long tether,” Rick said. “And they said you are on a video 24 hours a day and if you need to go off camera you need to call someone to come help you. When I went in they stopped my medication, and I started seizing within four to five hours. The goal was for me to have enough seizures for them to be able to tell for sure where they were being generated. And it took a surprisingly short period of time – one to two days – and then they put me back on my medications. I probably had 10 to 15 seizures in that period. And I got to see myself on videotape having a seizure, which was a new experience. It was a scary one.”

“I had seen them, of course,” Sharyn said, “and I really wanted him to see them also. I came at the video with a practiced eye, and when he saw the video, it hit him hard. I thought something he had done was funny and I looked at him with a big smile on my face, and he looked ashen.”

“Unchecked, and without medication,” Rick said, “I could be sitting on the sidewalk with a cup. That’s how drastic it is.”

Following his time in the EMU, Rick underwent further testing with functional MRI, so that Ficker could confirm that the “seizure focus,” the origin of Rick’s seizures, was not close to any of his control centers for language, movement, or memory and therefore could be safely removed.

In retrospect, it seemed almost improbable that Rick’s difficulties could be eradicated so thoroughly and safely. “In 25 years they had made lots of progress, and his tumor was operable,” Sharyn said. “We never thought that it would not always be inoperable. It never occurred to us to ask.”

The brain surgery required a craniotomy, the opening of the skull, and left Rick in more pain in the days immediately following than he was anticipating. But the results have been good. Rick was able to cut his medication in half; he has been free of seizures for an extended period of time; he has returned to his normal, frenetic workload, traveling to all corners of the planet; and he has been given medical clearance to drive.

“There are thousands of people who, like Rick, are living and coping with epilepsy and may not realize that there are potential cures for their epilepsy,” Ficker said. “About one in three people with epilepsy have seizures that are not adequately controlled with medications, and about 100,000 Americans with epilepsy are candidates for surgery. Yet only a few thousand a year actually have surgery.

“At the UC Epilepsy Center,” Ficker added, “we have been perfecting our ability to localize and safely remove the brain area triggering seizures for more than 25 years.”

Meanwhile, Rick continues to walk on the brilliant side, occupied with problem-solving and, in Sharyn’s words, “an active, inner-mental life.”

“I’ve always had an extremely good memory and still have a pretty good memory,” Rick notes. “In high school or college, if I heard it once, I didn’t need to study it again. Sometimes I wonder whether the seizures held me back and, if so, what might have been possible.”

That is one question that neither Rick, nor any doctor, can answer.

— Cindy Starr

This entry was posted in Hope Stories and tagged , , . Bookmark the permalink. Both comments and trackbacks are currently closed.