Craig Dornte's seizures were taking a punishing toll on his life. The sudden bursts of electrical activity in his brain often left him unconscious, and they could strike at any time. He'd gotten seizures in the shower; at his children's sporting and cheerleading activities. He feared that he'd lose his job.
"I was getting to the point where it was just driving me nuts. My standard of life wasn't anywhere near that I wanted it to be," says Dornte, a 55-year-old accounting manager in Fort Wayne, Indiana. "My parents, wife, kids, and friends were always scared for another event to come."
The husband and father of three has epilepsy, a brain condition that causes seizures. His seizures started in his early 20s after the end of a boat lift accidentally fell on the back of his head. Then around age 25, he had a seizure while driving and crashed his car.
Anti-seizure medicines helped Dornte manage his epilepsy for a time, but he dealt with side effects like memory loss, shaking, and mood swings.
By his mid-40s, medication wasn't enough. Seizure warning signs like slurred words and a feeling of "not really being there" hounded him, often at work, where Dornte sometimes hid to conceal the symptoms from his boss and colleagues. And the risk of having another seizure behind the wheel loomed so large that he stopped driving.
"That was horrible," he says. "I was at the point where I was willing to try anything just to get some sort of quality of life back."
Dornte had developed "drug-resistant epilepsy" – when medications are no longer able to prevent epileptic seizures. His doctor said it was time to consider surgery. But Dornte soon learned he wasn't a candidate for traditional surgery because his seizures came from a part of the brain that was too close to the area responsible for speech.
That's when Dornte first learned about a different kind of surgery called deep brain stimulation, or DBS, that uses carefully placed electrical pulses to prevent seizures or interrupt them when they start.
When Epilepsy Medicine Isn't Enough
Treatment for epilepsy usually starts with anti-seizure medicine. Some people take one, and others take more. Overall, these drugs control seizures in up to 7 in 10 people with epilepsy. But it can take time to find the right type of anti-seizure medicine or dosage. The right choice depends on things like the type of epilepsy you have, the kind of seizures it causes, and any other health conditions you have.
Some anti-seizure medicines can cause side effects like tiredness, trouble with memory and thinking, rashes, weak and brittle bones, and even a higher risk of suicidal thoughts. And over time, these medications may not work as well, as happened with Dornte.
A doctor can diagnose drug-resistant epilepsy after you've tried at least two appropriate anti-seizure medicines that didn't work even though you took them properly. Dornte says he wouldn't be surprised if over he'd tried 30 or more anti-seizure medicines while under the care of his past doctors through the years.
So he was hopeful about neuromodulation therapies like DBS that use electrical pulses in the brain to treat neurological conditions. His doctor told him that DBS "had done wonders" with another neurological condition – Parkinson's disease. Dornte was intrigued.
"I just wanted to
have something done because I was having the seizures, the slurring of words, just not comfortable being around people."
Taking a Chance on Deep Brain Stimulation
In early 2021, Dornte had his first surgery to get DBS.
Cleveland Clinic neurosurgeon Richard Rammo, MD, did the two-part surgery. During the first of the two operations, small openings were drilled into Dornte's skull and thin, insulated wires called electrodes were placed into his thalamus. That's an area in the middle of the brain that works like a relay station for incoming information about movement, hearing, taste, sight, and touch.
A week later, Dornte got the second operation. A device called a pulse generator was placed in his upper chest, below his collarbone. The device would send continuous electrical pulses, or "stimulation," to the thalamus by way of extension wires running under his skin to the ends of the electrodes.
Experts think that stimulating the thalamus works because the electrical pulses then travel though the brain's network of connections to the areas that cause seizures, Rammo says.
With the DBS device in place, Dornte took a few weeks to heal. Then his Cleveland Clinic neurologist, Dileep Nair, MD, turned the device on and programmed it from the outside of Dornte's body, adjusting and fine-tuning the device's settings over time.
Nair, the section head of adult epilepsy and director of intraoperative neurophysiologic monitoring at the Cleveland Clinic, says Dornte struck him as a highly skilled person who was determined to stay gainfully employed.
Dornte waited, eager to find out if his treatment would work.
Other Neuromodulation Treatments for Epilepsy
DBS isn't the only neuromodulation treatment option for epilepsy (sometimes called neurostimulation treatment).
Another type, called responsive stimulation (sometimes called responsive neurostimulation, or RNS), uses a device to track brain activity patterns to spot an oncoming seizure, and then sends electrical signals to prevent the seizure.
A third type is called vagus nerve stimulation in which a device placed in your chest sends continuous electrical signals to your brainstem through the vagus nerve in your neck.
In general, neuromodulation treatment isn't quite as effective as traditional surgery at reducing seizures. But not everyone is a candidate for traditional surgery, in which surgeons remove part of the brain. And traditional surgery also carries higher risks, such as physical disabilities and changes in thinking-related skills or personality.
Risks of Deep Brain Stimulation
DBS surgery carries relatively minor risks, says Derek Southwell, MD, PhD. He's an associate professor of neurosurgery at Duke University School of Medicine and the surgical director of the Duke Comprehensive Epilepsy Center.
Unless there's an unexpected problem when a surgeon implants a DBS device, deep brain stimulation typically doesn't pose a significant risk to mental processes, movement, or the senses, Southwell says. Still, no surgery or procedure is completely without risk. For DBS, these include bleeding in the brain, which he says happens about 1% to 2% of the time; and infections, which happen about 2% to 4% of the time, usually in the first few months after surgery.
Once you get DBS, typically the only other surgery you need later on is a procedure to replace the generator's battery. Standard batteries last about three to five years, while rechargeable batteries can last up to nine years. Surgery to replace the battery is typically outpatient, which means you'll be able to go home the same day.
A New Lease on Life
Deep brain stimulation has helped Craig Dornte get his life back on track. He hasn't had a seizure since June 2022.
"I don't have the fear anymore of having something happen in front of my kids or driving or at work," he says. "That was always there in the back of my head: Something could happen – it was going to happen."
He's back to driving his truck, and he feels secure at work with support from his employer and manager.
He still takes medicines to prevent seizures, as do most people who get epilepsy surgery. And he still gets side effects, like shaking and memory loss. Someday, he and his neurologist might decide to try lowering the dosages of medicines he takes.
Now that he's seizure-free, Dornte has readjusted well to managing his everyday responsibilities. But not everyone does. Some people have trouble getting used to the greater independence that successful epilepsy surgery can bring. "Seeking guidance from a mental health provider is very important if a person has difficulty adjusting," says Nair, Dornte's neurologist at Cleveland Clinic.
Mental health care also is crucial if you have depression, which is common among people with epilepsy, Nair says. "It is true that treatment of seizures can improve depression, but the opposite is also true – treatment of depression can improve seizure control," he says.
Looking back on his darkest days before DBS surgery, Dornte is certain he was depressed. He says the four years before his surgery were "filled with seizures, severe mood swings, loss of memory, [and] loss of abilities. Stress was prevalent in my family."
"Now," he says, "I feel we all have our lives back to enjoy."
