Kids diagnosed with epilepsy today have far more treatment options available to them, once they’re diagnosed correctly. This month I read about Isaac Klapper, an 18-year-old boy from Toledo, Ohio. When he was ten, Isaac began having daily episodes that caused his head to twitch, and his eyes to roll sideways. Isaac’s neurologist diagnosed him with a movement disorder and prescribed medication. For five years, that kept the episodes at bay, but they returned during his sophomore year in high school, interrupting daily life and throwing his prior diagnosis into question. Over the next two years, his neurologist tried multiple medications that didn’t stop the episodes. Isaac found himself missing out on milestones. He couldn’t drive, because of the chance he’d have an episode behind the wheel. The condition affected his social life and his ability to focus, because he always wondered when the next episode might strike. Isaac described the experience as devastating. “It was hard to handle. I just didn’t want to go anywhere because I was afraid of one happening.”
Eventually, a movement specialist diagnosed Isaac’s frequent erratic twitching as seizures. Determined to find answers, Isaac’s family took him to the Cleveland Clinic, an Epilepsy Center about 115 miles away, where he was diagnosed with epilepsy. Isaac had focal impairment awareness seizures (aka complex partials). When Cleveland Clinic’s neurosurgeon Dr. William Bingaman suggested a surgical treatment approach, Isaac said yes, calling it one of the easiest decisions of his life. “It was really a relief to just make a call, without hesitation. I was like, ‘I can’t live like this anymore.'” In March 2024, a neurosurgeon removed the grape-sized, seizure-triggering portion of Isaac’s brain, which was in his left cingulate gyrus. Although the doctor said his brain’s abnormality might have been due to a brain tumor, once they removed it, they determined it was due to cortical dysplasia, which means cells migrated unusually during his brain’s development. Now that the abnormality has been removed, chances are good that Isaac won’t have seizures.
Reading Isaac’s story, I was awed, empathetic and enthusiastic. I was amazed at how quickly Isaac agreed to take the surgical treatment approach. When my neurologist first suggested brain surgery in 1992, the prospect terrified me. I didn’t explore the option for over 20 years, after my seizures’ severity increased. In 2014 I had a temporal lobectomy where the neurosurgeon removed the kiwi-sized seizure-triggering portion of my brain. The procedure was glitchy—a story I describe in my book, Seizing Control—but like Isaac, I was ultimately seizure-free.
I identified with Isaac’s sense of loss and fear during his high school career. Like Isaac, I couldn’t drive during my teen years. I also wondered what my peers thought about me when I had seizures during the school day. The experience instilled ongoing self-doubt, exacerbated by the fact that I switched schools several times, so I was already an outlier as the new kid in town. I understand Isaac’s longing to get the seizures behind him, so he could stop worrying and wondering about when the next one would come. Teenage years are challenging enough without that question perpetually hanging over your head.
But more than sympathy and amazement, I feel joy and elation about Isaac’s story. I am thrilled that today, young people with epilepsy have access to surgical options and Epilepsy Centers like the Cleveland Clinic. Epilepsy Centers provide comprehensive care for those with epilepsy. They are equipped with the most up-to-date technologies and testing machines and staffed with epileptologists and neurosurgeons who specialize in epilepsy treatment. Epilepsy Canters are accredited by the National Association of Epilepsy Centers, a nonprofit that develops standards and guidelines for best epilepsy care practices.
Last January, I blogged about a young woman with epilepsy, Gabi Sable, and her successful brain surgery experience at Cleveland Clinic. Like Isaac, Gabi also had to travel over 100 miles to access the facility’s cutting-edge pretesting and imaging technologies, and a neurosurgeon who stopped her seizures by removing a lesion, using robotic laser ablation therapy. Both Gabi and Isaac have positive lifechanging stories because they had access to the Cleveland Clinic’s innovative technologies, techniques, and trained neurosurgeons.
According to Isaac’s neurosurgeon Dr. Bingaman, although there are “a million people that are candidates for [brain] surgery right now,” only “two to three thousand” operations are done per year. He described the treatment option as “incredibly underutilized.” Lack of access to Epilepsy Centers is one reason for this. There have been numerous neuroscientific equipment upgrades and research advancements since my own somewhat glitchy 2014 brain surgery experience. With the new technologies, today’s brain surgery candidates will likely avoid the setbacks I experienced, if they get to an accredited Epilepsy Center. Unfortunately, only 44 out of 50 states have them, and in the larger states, patients sometimes still travel hundreds of miles to access them. We need increased accredited Epilepsy Centers in the U.S., so that all people with uncontrollable seizures can explore surgery as treatment option, if they want to.
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