Riding his motorcycle used to be the ultimate feeling of freedom for Scott Anderson. He never imagined his longtime passion would leave him feeling trapped in his own body.
In June 2012, Scott was out for a ride when a car suddenly pulled in front of him. His bike slammed into the car, sending Scott flying 40 feet in the air. He wasn’t wearing a helmet at the time.
The next thing he remembers is waking up in the hospital more than a week later. In addition to fracturing his arm and leg, Scott had fractured his skull, resulting in a severe traumatic brain injury. Doctors had placed him in a medically induced coma, which is used to temporarily shut down the brain to protect it from further damage.
While unconscious, Scott had suffered multiple seizures. Immediately following a traumatic brain injury as significant as his – one requiring several emergency surgeries – it’s fairly common for seizures to occur. But months later, as the rest of his body showed signs of recovery, his seizures worsened.
Soon, he received life-changing news: As a result of scar tissue on his brain, Scott had developed epilepsy.
Feeling scared – and stuck
Before his accident, Scott was an adventurous person. But after being diagnosed with epilepsy, he felt like life as he knew it was “on hold.” He was only 26 at the time.
Seizures are unpredictable, and even a small one at the wrong time can be incredibly dangerous. At his worst, Scott suffered a seizure every single day. He was forced to stop driving and had to leave his career as an electrical duty lineman.
The first type of seizure he experienced, known as a focal aware seizure or an “aura,” left him in a deeply uncomfortable trance-like state for 20 to 25 seconds.
“When I had an aura, I’d get an incredibly nauseating stomachache. I’d get a bad smell, almost like garbage, and a bloody, metal taste,” Scott says. “While it was going on, I could hear everything going on around me, but I couldn’t respond until I came out of it.”
Sometimes, an aura is a warning that a stronger seizure is coming. This was often the case for Scott, who also experienced convulsive seizures.
During a convulsive seizure, Scott would blackout, fall to the ground and shake uncontrollably. Once, he recalls, he fell during a convulsive seizure and hit his head so badly that he ended up needing 8 stitches.
Scott noticed that stress and a lack of sleep triggered his seizures, so he did everything he could to stay relaxed and well-rested. But he could never completely control his environment, and the pressure of trying made him more anxious.
“The fact that a seizure could happen at any moment, no matter what I did, was incredibly nerve-wracking,” he says.
Finding the right care
In 2017, Scott moved from Ohio to Lake Wylie, SC. Soon after, he began seeing Dan-Andrei Dimitriu, MD, an epileptologist at Atrium Health’s Neurosciences Institute.
With the largest team of epilepsy providers in the Charlotte area, Atrium Health offers comprehensive, expert treatment at several locations.
Scott went to Atrium Health’s Carolinas Medical Center (CMC), a Level 4 epilepsy center recognized by the National Association of Epilepsy Centers. Level 4 epilepsy centers provide the highest level of specialized care.
With medication, Scott had gone from having one seizure a day to having one a month. And after years spent trying to control them, he was settled on the idea that this might be the best possible outcome. Dr. Dimitriu, however, wasn’t satisfied.
Not only was Scott living in fear of his next seizure, but he was also in danger. Having even one uncontrolled convulsive seizure per year increases the risk for SUDEP, which stands for Sudden, Unexpected Death in Epilepsy.
“There’s no number of seizures that we’re satisfied with,” Dr. Dimitriu says. “We always try to do something more to improve seizure control when the patient is not seizure-free, period.”
From their very first meeting, Scott was encouraged by how invested Dr. Dimitriu was in helping him.
“I saw three different neurologists after my accident, and they just didn’t go into as much detail or make me feel as comfortable,” Scott says.
A surprising discovery
While brain surgery is an effective treatment for some cases of epilepsy, Scott didn’t think it was an option for him.
Given that he’d fractured the front left part of his skull, his previous doctors believed his seizures were coming from the same area. According to Scott, they said it was too risky to operate because it was very close to the area of the brain that controls speech.
And while it’s true that there are risks involved with any brain surgery, Dr. Dimitriu had reason to believe this assessment wasn’t entirely accurate. Scott’s symptoms and initial test results suggested his seizures may come from the right temporal region of the brain, rather than the left frontal region.
The underlying cause: A phenomenon known as a coup-contrecoup injury.
“Your brain is floating in a fluid inside of the skull. When you hit your head, the brain moves around in the fluid,” he explains. “When someone has significant head trauma, they get an injury to the brain right under the area where they got hit, and then an injury at the exact opposite area of the brain.”
This meant it was possible that Scott had an undiscovered injury on the right side of his brain that caused his seizures. To precisely pinpoint the source, Dr. Dimitriu recommended advanced testing. Depending on what they found, Scott might be eligible for surgery after all.
The best chance of recovery
As a first step, Scott was admitted to a highly specialized unit at CMC known as the epilepsy monitoring unit. CMC was the first Level 4 epilepsy center in Charlotte region to offer cutting-edge epilepsy evaluation and treatment options, including surgery.
There, he was taken off his medications so that his seizures could be monitored in a controlled environment. He had small discs called electrodes attached to his scalp to record his brain activity and a video camera recording his seizures as they occurred.
During this test, known as continuous video electroencephalogram (EEG) monitoring, all of the recorded seizures came from the right side of Scott’s brain. Further advanced imaging, including MRI and PET scans, confirmed these findings.
Based on Scott’s testing, Dr. Dimitriu and neurosurgeon Mark Van Poppel, MD, believed that surgically removing the exact part of his brain where the seizures started – known as the “seizure focus” – would give Scott the best chance at a seizure-free life. After consulting with his family, Scott agreed to move forward.
“Any surgery is scary, and especially brain surgery,” Scott says. “But I couldn’t have been in better hands.”
A new sense of freedom
In February 2019, Scott underwent an intracranial EEG at CMC. Dr. Van Poppel placed electrodes directly on to Scott’s brain to pinpoint his seizure focus even more accurately.
After monitoring his brain activity for several days, Scott’s care team offered a surgical option to attempt to cure his seizures. During the procedure, known as a right temporal lobectomy, Dr. Van Poppel removed the seizure focus.
Scott hasn’t had a seizure since his surgery – a fact that both he and Dr. Dimitriu are celebrating.
“That’s not something that he’s had in many years,” Dr. Dimitriu says. “And that’s a good sign that he might stay seizure-free for a long time after the surgery.”
For Scott, freedom from seizures has meant freedom to live life on his terms. He’s started driving again and does high-intensity, CrossFit-style workouts. He’s newly engaged and planning a wedding. He still thinks about his experience with epilepsy every day, but he’s not controlled by fear anymore.
“I feel amazing, just as I did before the accident,” he says. “I don’t have to worry about having a seizure. Now, I have peace of mind.”
To learn more about our epilepsy care, visit AtriumHealth.org/Epilepsy, or call 704-512-2802 to schedule an appointment.
