Finding Seizure Freedom: One Man's Epilepsy Journey

For more than a decade, Eric Bivens had seizures that struck with little warning—once, twice, up to 10 times a day. “The world started spinning,” says Bivens, 43, a graphic designer, guitarist and former youth pastor. “My mind turned upside down.” 

Bivens even had a seizure while leading a worship band at church. Suddenly, he couldn’t sing. But somehow he kept strumming the chords “as drool ran down my shirt onto my guitar.” The symptoms faded in less than a minute, but Bivens never knew when his next seizure was going to happen.

Now that’s all in his past. Bivens has been seizure-free since 2016, when neurosurgeon Lee Selznick, MD, of Valley Health Virginia Brain and Spine, carefully removed the cause—a popcorn-shaped clump of abnormal blood vessels in his brain called a cavernoma, along with the thin margin of irritated tissue around it.

“Eric was tough and determined,” Dr. Selznick says. “He’s a role model for patients with seizures. That anyone can be empowered to find seizure freedom and take paths they haven’t envisioned before.”

Bivens’ journey illustrates the challenges faced by the 3 million Americans with epilepsy. And it highlights the effectiveness of surgery, a research-proven treatment with a long track record that’s often overlooked for the one in three people whose seizures are not controlled with medication. “When medications are no longer working, 50 to 70 percent of epileptic seizures can be cured with surgery, with minimal risk,” says neurologist Paul D. Lyons, MD, PhD, an epilepsy specialist at Winchester Neurological Consultants | Valley Health and co-founder and co-director, with Dr. Selznick, of the Virginia Comprehensive Epilepsy Program at Winchester Medical Center. “There are decades of research demonstrating safety, yet there’s hesitancy from many doctors about taking patients to the operating room.”

HOPE FOR EPILEPSY

Epilepsy can have many causes, including genetics, infections, autoimmune reactions, metabolism issues, a brain injury or, as in Bivens’ case, an abnormal blood vessel in the brain. Epilepsy is the fourth most common brain disorder in the world, yet people with the disorder can wait months or years before receiving an accurate diagnosis and treatment.

Even then, many live with ineffective treatments and ongoing seizures. “Epilepsy can impact your whole life,” Dr. Lyons says. “Seizures are frightening, but epilepsy is more than seizures. It can mean problems with mood, attention, concentration, personality, and information processing, like memory and recall. A third of all patients with epilepsy can have depression.”

Drs. Lyons and Selznick started the Virginia Comprehensive Epilepsy Program and work alongside neurologist and epilepsy specialist J. Craig Henry, MD, to address the needs of people with this seizure disorder. The program is one of just five epilepsy centers in Virginia to achieve the National Association of Epilepsy Centers’ highest designation—Level 4—for evaluation and treatment. “Epilepsy can impact your whole life,” Dr. Lyons says. “I was drawn to it because it’s one of the fields in neurology where we can make a difference. There are treatment options to help people achieve their greatest capacity.”

The Virginia Comprehensive Epilepsy Program uses advanced techniques for evaluating and treating epilepsy—including medications, vagus nerve stimulation (VNS), responsive neurostimulation (NeuroPace), diet modifications and surgery. “We remain in contact with all our patients,” Dr. Selznick says. “The vast majority of our patients have remained seizure-free, and all have had significant reduction in their seizures. We’ve had people take new jobs, go to college, have a baby for the first time. It can be transformative. One recent patient had surgery after more than 40 years of drug-resistant epilepsy. He was able to get a driver’s license for the first time in decades.”

Dr. Lyons notes that patients should not expect to come off all anti-seizure medications after surgery. “Our success rate is based upon patients remaining on some anti-seizure medication,” he says. “Certainly, we can reduce the number and doses of medications, but the goal is not medication freedom but rather seizure freedom.”

Less-invasive surgical options for treating epilepsy are also improving and expanding as the technology evolves, notes Dr. Selznick. “The newer options are allowing smaller surgeries and more targets such that we will be able to offer a surgical option for almost everyone with poorly controlled seizures,” he says.

A LIFESAVING MOVE

Bivens had his first seizure in 2005 when he was working as a youth pastor in his hometown of Owensboro, Kentucky. A few months after contracting an infection on a mission trip to Central America, he blacked out during a meeting at church. “I was stuttering,” he says. “I couldn’t get the words out of my mouth.” After several more seizures, he had a brain MRI. A neurologist in Kentucky told Bivens the scan was normal and suggested the problem might be low blood sugar.

Seizures continued. When Bivens and his family moved to Georgia a few years later, Bivens consulted with another physician and began taking an anti-seizure medication. But the dose was too low. “I had seizures continually for the next five and a half years,” he says. Then a childhood friend asked him to come work at a small church in Martinsburg, West Virginia. A new family doctor ordered another brain scan, spotted a dime-sized abnormality and referred Bivens to Dr. Lyons. “If we had not moved to Martinsburg, I don’t know that I would have had another MRI,” Bivens says. “I don’t know that I would have discovered that 30 minutes away in Winchester there was a Level 4 epilepsy center.”

Dr. Lyons identified the malformation in Bivens’ brain as a cavernoma. The abnormal cluster of bulging blood vessels was irritating brain tissue in his left temporal lobe, triggering seizures. Bivens tried several anti-seizure drugs at different doses. “Dr. Lyons was confident we were going to figure out what we could do,” Bivens says. “That’s what I loved about him.”

But seizures continued once or twice a month despite drug treatment. In consultation with Drs. Lyons and Selznick, Bivens decided to have surgery. “Joy and expectation, the possibility I may never have to deal with seizures again, came to life,” he says.

A TWO-PART PROCESS

Epilepsy surgery is a two-step process. First, Dr. Selznick needed to confirm that Bivens’ cavernoma and the tissue around it were really the culprit behind his seizures. So, Bivens spent nearly a week in the intensive care unit at Winchester Medical Center (WMC) with dozens of electrical contacts attached to his brain. He stopped his seizure medications in order for the epilepsy program team to determine where his seizures emanated from and if they came from one location or several.

“We wanted to see three to six seizures, to make sure they were coming from the area of the cavernoma,” Dr. Selznick explains.

They were. Bivens returned to WMC in July 2016. “The cavernoma was sitting deep in the left temporal lobe, two to three inches from the surface,” Dr. Selznick says. Bivens received anesthesia but was awake for part of the operation so Dr. Selznick could identify areas to avoid—such as nearby memory and language pathways—before removing brain tissue. Using a probe with a mild electric current, he stimulated spots near the cavernoma while a nurse asked Bivens questions to test his language and memory skills. “We map all those functions to make sure surgery is as safe as possible with extremely low risk for complications,” Dr. Selznick says.

The procedure was a success. Bivens returned home a few days later. “After six to eight weeks, I felt like myself again,” he says. “My hair grew back, and the swelling [of the brain] went down.”

The seizures have never returned.