MUSC Health neurologist shares his epilepsy experience to advocate for others

MUSC Health neurologist Danuel Snelgrove, M.D., was the keynote speaker at the Feb. 1 symposium hosted by the South Carolina Advocates for Epilepsy in Columbia. But he wasn’t just talking about epilepsy from a doctor’s point of view. He knows about the condition that affects about 3.5 million Americans from personal experience.

“I got a really bad case of mono when I was 12 years old. And in the weeks after I had mono, I started telling my family in the morning, ‘Hey, I feel like I'm choking in my sleep. Something doesn't feel right.’ And then, after a few months of this, my parents finally heard me one night. I had this huge, violent seizure in my sleep –  landed on a lava lamp that exploded everywhere.”

After that shocking event, plus some trial-and-error exploration of treatment options, Snelgrove’s parents brought him to MUSC Health, about an hour and a half away from their home in Columbia. They needed the multidisciplinary options the academic medical center could offer their son.

“I had medically intractable, drug-resistant epilepsy,” he said. “My seizures were frequent. They were violent. They got worse as I got older.”

Snelgrove was one of the first pediatric patients at MUSC Health to get a vagus nerve stimulator. The device, which goes under the skin of the chest, sends electrical pulses to the brain through the vagus nerve. The goal is to change how areas of the brain involved in seizures work, reducing the number and severity of seizures. 

Snelgrove’s team at MUSC Health also helped his family research other options beyond South Carolina. “My senior year, I had three brain surgeries. I have been seizure-free since Aug. 12, 2003 – my last surgery.”

It was a huge relief. So is knowing that these days, MUSC Health has the only Level 4 epilepsy center in South Carolina, with surgery among its treatment options. The top-level designation comes from the National Association of Epilepsy Centers.

Once he was seizure-free, Snelgrove knew he wanted to become a doctor like the ones who helped him through the years. But first, he had to make up for lost time. His seizures had taken a toll on his grades. “I was barely a C student.”

Snelgrove found a college that was a good fit. He was off and running, earning grades that reflected his intelligence and abilities, grades that carried him into medical school and, ultimately, residency and a fellowship at the Medical University of South Carolina. He now works as a neurointensivist at MUSC Health and is an assistant professor of Neurosurgery in MUSC’s College of Medicine.

But Snelgrove never lost his passion for helping kids dealing with epilepsy. He and a friend who also had epilepsy, Drew Dixon, started the Electric Minds Foundation to raise money for pediatric neurology research. That foundation works with South Carolina Advocates for Epilepsy, the group that held the Feb. 1 epilepsy symposium where Snelgrove gave a talk called “Seize the day: How epilepsy shaped my life.”

By sharing his story, he’s doing what he can to help children and adults suffering from a condition that affects one in 26 people.

“Most epilepsy patients fall into two treatment paradigms. They're medically controlled on medication. And that's the vast majority of people with epilepsy. But about 30% of people with epilepsy are going to be in this drug-refractory epilepsy or medically resistant epilepsy.”

People like him. “Getting out in front of them and showing them what is available from a surgical standpoint, whether that's a brain surgery, like I had, or a vagus nerve stimulator or other possible surgical interventions at MUSC. There are lots of options now, and lots of people with epilepsy can benefit –  it might reduce the amount of drugs that they're taking,” Snelgrove said.

“It really is all about getting them in front of an epilepsy specialist, an epilepsy surgeon at a level 4 epilepsy center like MUSC, so they have all the tools to make an informed decision.”