Casey Schorr’s first seizure happened as he was helping a friend do chores. All of a sudden, the Cheney High School freshman started feeling dizzy.
“When I came to, there were five EMTs standing around my head,” Schorr said.
It was the beginning of a high school experience marked deeply by epilepsy. Schorr’s seizures became more frequent, and he didn’t respond well to medication. His friends helped him through seizures in class, and he missed school for medical appointments.
“It just progressively got worse and worse,” he said. He’d have to be home from school earlier so he had time to take the anti-seizure drugs, which made him feel loopy.
“My time that I was able to spend with friends lowered drastically,” he said.
His mother, Melani Schorr, said she felt helpless and on edge constantly.
“Every time my phone rang with an unknown number I always had to answer because I didn’t know if it was some EMT,” she said.
Before Schorr went out with friends, she’d sit them down and make sure they knew what do to if he had a seizure.
“The seizures themselves were super traumatic, but just knowing there was nothing I could do to prevent them or stop them was really, really hard,” she said.
Less than a year after his diagnosis, Schorr learned he might have another option: brain surgery.
About two-thirds of people with epilepsy are able to stop seizures with medications. But another third, like Schorr, don’t respond well.
Andrew Ko, head of the UW Medicine Functional and Restorative Neurosurgery Program in Seattle, said patients who have failed two tests of good medication are called “refractory,” and are usually brought in for more testing to figure out where the epilepsy is coming from.
“If you’ve been on two drugs and they haven’t controlled your epilepsy, the chances of finding a combination that does control it is about five percent,” Ko said.
In some of those cases, neurologists and neurosurgeons can work together to pinpoint the part of the brain causing seizures and remove it, often restoring function with minimal side effects.
“I jumped right on it. I was like, ‘Do it, I want to do the testing, I want to get it done,’ ” Schorr said. The family started preparing for a June 2017 surgery at the end of Schorr’s senior year of high school. He’s already missed about half the school year because of epilepsy, but was able to graduate on time.
Schorr went to Seattle with Melani for a two-week trip, where he had a battery of tests to see whether he qualified for surgery.
Ko isolated the seizures to the right side of Schorr’s brain. The teenager passed the tests and was scheduled for surgery on June 20. Melani Schorr waited anxiously in the hospital while her son was in the operating room, a day she described as “the longest five hours of my entire life.”
During surgery, Ko removed portions of Schorr’s lateral temporal lobe, parahippocampus, hippocampus and amygdala in a procedure called an anterior temporal lobectomy.
Schorr woke up with 47 staples in his head, but was released from the hospital just two days later.
“For a lot of people I think the process is kind of an anticlimactic one,” Ko said of receiving surgery. “It seems like people try to avoid it as as long as you can, even though we have really good evidence that it’s a better treatment than medication.”
Recovery is a long process. Schorr will have to take anti-seizure medication for the next two years as his brain recovers, and his short-term memory is “horrible,” he said. He sometimes stutters and has trouble finding the words he wants to say. But his seizures are gone.
“I haven’t seen an episode or even small seizure since the surgery,” he said. “I’m ecstatic. I’m so happy.”
Schorr is now checking off milestones many of his classmates hit before graduation. He’s allowed to drive and is set to buy a Yamaha Raptor four-wheeler soon. He moved to Lewiston, Idaho, on his own and is working at a fabrication shop in Clarkston, Washington.
He’s enrolled at Walla Walla Community College’s welding technology program on the Clarkston campus and plans to be welder, just like his father and grandfather.
“It’s exciting to see him excited to get a car and excited to be able to work and excited to do things that everybody else gets to do,” Melani Schorr said. Her worries about her son are now the ones most parents of teenagers face: “Will he crash my car?” not “Will I get a middle of the night call from an EMT?”
Schorr said after years of medical worry, he feels like he can finally start his own life.
“It’s a horrible situation to go through, but I’m very happy I’m persevering through it,” he said.
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