I had my first seizure when I was a junior in college, but it was years before I sought a neurologist who specializes in epilepsy, also known as an epileptologist. And I have my mother to thank for that. She spotted a poster in a hospital that described an epilepsy unit and the specialists who work there.
Under the care of an epileptologist, I finally began to understand the full scope of my condition. The first thing he did was admit me to the hospital’s epilepsy monitoring unit, where I underwent an electroencephalogram (EEG) during which staff tracked my seizures to locate where they originated in my brain. This helped my doctor determine which treatment would be best for my seizure type.
After six years with an epileptologist, I tell everyone with epilepsy to seek out a specialist. Here are my reasons why.
In general, epileptologists have access to more diagnostic tools such as an epilepsy monitoring unit to pinpoint seizures and prescribe treatment options accordingly. A common test is the EEG; electrodes placed on the scalp send signals about electrical activity in the brain to a computer recorder. I was tested at a center in Michigan and another in Minnesota. Since my triggers were sleep deprivation and exercise, nurses kept me up late and put me on a stationary bike. I had a seizure immediately. Another time I had a seizure while eating. As my doctor in Michigan told me, “You did a good job. You gave us the data.”
My epileptologist worked closely with me as we tried out several different anti-seizure medications to see which one, if any, worked. He explained how the first medication he prescribed might not be effective and we’d try others. That helped me manage my expectations. Eventually, though, I kept getting seizures and none of the medications helped.
An epileptologist can sit down with you and discuss all your treatment options, including following a high-fat ketogenic diet, implanting a vagus nerve stimulator, and surgery. From my EEG, my doctors said my seizures were likely coming from my right temporal lobe and spreading to my frontal lobe because my behaviors mimicked both. Since people with temporal lobe epilepsy tend to do well after surgery, my doctors suggested a lobectomy, an operation during which a portion of the temporal lobe is removed.
Before I could schedule a surgery, my team conducted more tests including a CT scan, an MRI, and an all-day neuropsychological test, during which I had to draw figures, remember words and shapes, and count backward.
Before my lobectomy, surgeons performed a craniotomy to map my brain to locate the exact source of my seizures and their relationship to speech and movement. They opened up my head by lifting a flap from my skull to put a small grid directly on the surface of my brain with electrodes that connected to a monitor and closed up my head with staples. After watching me have seizures for a week and confirming their location, the surgeons opened up my skull again, removed the grid, and proceeded to cut out part of my temporal lobe where the seizures were coming from.
Surgery was the best decision of my life. I’ve had no full-blown seizures since and only occasionally experience auras.
Stacia Kalinoski is an award-winning journalist and creator of the documentary Brainstorm. The film aired on several PBS stations in November 2017 and is now available for free streaming. Through her movie, Kalinoski hopes to reduce the stigma around the condition. Learn more and watch the film at brainstormdocumentary.com. To learn about how epilepsy affected Kalinoski’s running, read Run Down, her Speak Up essay.