Unrelenting teamwork stops the electrical storm of one man’s epilepsy
A Portsmouth man with debilitating epilepsy is beating the odds because of the unwavering dedication of the medical professionals at VCU Health.
November 20, 2024
At one point, Kevontae Smith was having more than 200 seizures a day. After having a procedure called responsive neurostimulation (RNS), he has seen a significant reduction in seizures and has a better quality of life. (Joe Kuttenkuler and Taylor MacKillop, Enterprise Marketing and Communications)
By Leigh Farmer
Imagine searching for a magic needle in a haystack. Every now and again, the needle shimmers in the light so you can see it between all of the pieces of hay. But then it goes dark again.
That’s the game that epilepsy plays with neurologists and neurosurgeons who are attempting to pinpoint an electrical storm occurring in the brain of a person who isn’t responding to traditional epilepsy medication. They must find the “needle,” the electrical current that is malfunctioning, before they can determine how to fix it.
Epilepsy is a chronic neurological disorder that causes electrical misfires in the brain. People suffering from the disorder have unpredictable seizures. They can be dangerous and, many times, deadly, if not appropriately cared for and monitored.
The Center for Disease Control and Prevention estimates 3 million adults in the United States have epilepsy with 1 in 26 having a diagnosis of epilepsy in their lifetime. Of that number, about one-third of patients don’t respond to medication, according to the Epilepsy Foundation.
Video by Joe Kuttenkuler and Taylor MacKillop, Enterprise Marketing and Communications
Discovering the location of a misfire in the brain is a challenging job. You have to be precise. Christine Baca, M.D., chief of the epilepsy program for VCU Health, puts it to her patients this way: “Picture a map, and we need to narrow it down. And we’ve now narrowed it down to the state of Virginia, but we don’t want to target something in Alexandria when we’re really in Richmond.”
The whole process of finding and treating a medication resistant misfire in the brain can sometimes take up to a year with numerous specialized diagnostic tests.
At VCU Health, this type of journey typically starts with a few days stay in the epilepsy monitoring unit, then months of outpatient testing to come up with a comprehensive clinical course of action.
“If we figure out the ‘where’ then we can figure out if there is a surgical option for these patients,” Baca said.
But what if you don’t have time?
Hidden seizures take time to discover
Kevontae Smith is a character. In this case, he’s our metaphorical “haystack.”
The 34-year-old Portsmouth man is described by many as unstoppable. He has a sparkle in his eyes when he talks about his nights dancing with friends. As he walks around his neighborhood, assisted by a walker, Kevontae exudes an optimism that many credit for getting him through one of the roughest years of his life.
In 2023, he was on the waiting list for testing at VCU Health’s epilepsy monitoring unit. He was living with seizures that made his face and leg twitch. It didn’t look life threatening but the medicine to stop the seizures didn’t seem to be working.
Little did he know his seizures were silently ravaging his whole body.
His mother, Dawn, saw things getting worse, fast.
“He would call me at night and say ‘ma, I fell,’” she said, explaining how his legs had become so weak from the seizures that he would have to crawl to the phone to make that call. “We didn’t know what to expect from night to night.”
When Kevontae Smith came to VCU Medical Center, he couldn’t walk and barely spoke. About a year after the RNS procedure, he is all smiles as he walks around the neighborhood with his walker. (Joe Kuttenkuler and Taylor MacKillop, Enterprise Marketing and Communications)
He was also beginning to lose the ability to swallow, and he was losing pounds off his already slim frame. His quick progression was unexpected. He went to local hospitals when he felt he couldn’t deal with it on his own. Then, one day, the seizures just didn’t stop. He was put in a medically induced coma to stop them, a technique often used by neurologists.
It didn’t work.
Dawn and the doctors in Portsmouth consulted with Ken Ono, D.O., Kevontae’s epilepsy neurologist at VCU Medical Center. Ono saw Kevontae periodically and the long-term plan was to have him evaluated in the epilepsy monitoring unit. But testing takes months.
“I had a sense that things were escalating quickly,” Ono said. He asked Dawn and Kevontae to come to Richmond immediately.
“Kevontae didn’t have six months. He had maybe six days,” Ono said.
He knew his team had very little time to find the needle in the haystack.
Completing a year’s worth of work in seven days
By the time Kevontae made it to VCU Medical Center he couldn’t walk, he could barely talk, and he had a feeding tube.
“I remember looking at him and thinking there is no way he can leave the hospital unless we do something really urgently in terms of surgical options because the medicines had not been working,” Baca said.
The team at VCU Medical Center quickly discovered something alarming.
Kevontae had two spots in his brain where seizures were occurring and the type of seizure, epilepsia partialis continua (EPC), meant that his brain was continuously enduring electrical malfunction. Kevontae was having more than 200 seizures each day - way more than anyone could have imagined. They had to operate quickly to save him.
Kevontae Smith’s VCU Health care team knew that they needed to act fast to help the 34-year-old. Left to right: Sandra Dewar, Ph.D., RN, FAES, FAAN, epilepsy program manager at VCU Health, and Ken Ono, D.O., epilepsy neurologist at VCU Health. (Joe Kuttenkuler and Taylor MacKillop, Enterprise Marketing and Communications)
Despite everything going on in his brain, Kevontae remembers it all well. “They said, ‘do you want this procedure?’ and I was like ‘yes!’”
Dawn said she was comforted by the knowledge and confidence in the team. “I cried, he cried. We were scared...They really explained it in details and that was like phew.”
The treatment proposed by the VCU Medical Center team was called responsive neurostimulation (RNS).
“In our minds, after talking, it seemed like the exact therapy we would need for this case,” said Paul Koch, M.D., surgical director of the epilepsy program at VCU Medical Center.
In the first surgery electrodes were implanted in Kevontae’s brain to map out the seizures and record his brain waves to identify the “signature” of his seizures. Using this advanced technology, the doctors searched for the needle in the haystack.
Once the precise location of his seizures was identified, permanent electrodes were placed in that exact location and connected to a small, implanted device during a second surgery the next day. This system, called responsive neurostimulation, listens for the beginning of a seizure and then provides stimulation to stop it.
I’m proud of [Kevontae]. We did all the surgery and the fancy stuff, but for a year he worked. There were up times, there were down times. He just kept going.
Paul Koch, M.D., surgical director of the epilepsy program at VCU Medical Center
Led by neurologists and neurological surgeons, this team has taken on some of the toughest and most remarkable cases to provide help and hope to patients. Kevontae’s case was the most remarkable yet.
“Using RNS as an emergency therapy is a new thing. It’s pretty novel,” Baca said.
Despite the timeline, they knew it was Kevontae’s best chance at life.
RNS takes incredible teamwork and an interdisciplinary approach. From nuclear medicine to nurses, the symphonic collaboration between teams is beautiful to watch at VCU Medical Center. The team of more than seventy professionals worked to find where the seizures were happening (surgery number one) and implant the RNS device in Kevontae’s brain (surgery number two) within 48 hours.
“For a surgeon to get operative time, and a huge amount of operative time with a huge team, that quickly on two successive days was more than a minor miracle,” Koch said, astounded by the teamwork.
How the unwavering dedication of Kevontae’s care team and support system are helping him thrive
Dawn never left her son’s side.
“I had my bags packed for a week. We ended up staying about a month,” she said.
Kevontae had to learn to walk, talk, and eat again.
“We stopped the seizures but that doesn’t mean he suddenly regains his strength or all his nutrition,” Koch said.
From VCU Medical Center, Kevontae went to a rehabilitation center where he received the therapy he needed to live at home again.
Kevontae Smith’s care team credit his support system, especially his mom and main caregiver, Dawn Smith, for helping him get through one of the hardest years of his life. (Joe Kuttenkuler and Taylor MacKillop, Enterprise Marketing and Communications)
Meanwhile, the RNS device was working – dramatically decreasing his seizures within just a few months. And at the six-month mark they were gone. After a year, he was walking again.
“I’m proud of him. We did all the surgery and the fancy stuff, but for a year he worked. There were up times, there were down times. He just kept going,” Koch said.
The entire team, while confident they did their best, were most impressed by Kevontae and his support team.
“When I think of Kevontae now, I think about bravery. I think about trust. I think about resilience. Mom never quit,” Ono said.
Although Kevontae is using a walker, he is determined to walk unassisted again.
His mom, his full-time caretaker, said she is grateful that the team at VCU Health didn’t give up on her son.
"He will probably never be 100 percent, but as long as he has a better quality of life, I’m satisfied. Absolutely satisfied,” Dawn said.
“Oh, I’m going to get to 100,” Kevontae chimes in.
