Refractory Epilepsy Patient Calls Barrow Neurologist ‘Superman’

Imagine yourself on a rickety wooden rollercoaster. Your car has just left the station and is gradually climbing the first slope, click-clacking its way up the track. “Here it comes; here it comes,” you think to yourself in anticipation as you reach the crest.

Then, you drop.

That’s what a focal seizure feels like for Randy Ehlers. “Like a ride on Colossus at Magic Mountain but not quite as fun,” the 51-year-old said.

For nearly 20 years, Randy mistook these partial seizures for anxiety attacks. They mostly went unnoticed by others, as the signs were subtle: goosebumps, sweat on his forehead, and maybe a blank stare. It wasn’t until he started experiencing tonic-clonic seizures that he learned he has epilepsy.

The diagnosis ultimately led him to the clinic of Vladimir Shvarts, MD, FACNS, at Barrow Neurological Institute. Dr. Shvarts is a neurologist and the director of the Barrow Epilepsy Center, but Randy thinks of him as his “Superman.”

“He has stepped in and saved my life on numerous occasions,” explained Randy, who describes the term “refractory epilepsy” as an understatement for his complex case. “My life, while still difficult, has been given hope again because of Dr. Shvarts.”

An Epilepsy Diagnosis and a Search for Solutions

About 10 years ago, while working as a master planning analyst, Randy returned to his desk after his lunch break, turned on his fan, and made a comment about the summer heat. “The next thing I know, I’m being wheeled out of the place on a stretcher and watching the HR guy run behind me with my work bag,” Randy recalled.

He had just experienced his first tonic-clonic seizure. Formerly known as grand mal seizures, tonic-clonic seizures consist of violent muscle contractions and a loss of consciousness.

The fifth-generation Arizonan underwent observation on an epilepsy monitoring unit at a Phoenix-area hospital, where he then experienced one of those “anxiety attacks.” Electroencephalography (EEG) confirmed that the attack was actually a sudden electrical disturbance in the brain, also known as a seizure.

“My life, while still difficult, has been given hope again because of Dr. Shvarts.”

Randy Ehlers, Barrow Patient

Randy was then diagnosed with epilepsy, a condition characterized by spontaneous, repeated seizures. While he worked with a neurologist to try to manage his epilepsy with medications, not only did the seizures keep coming, but Randy felt an uncharacteristic fatigue set in. He went from maintaining a full-time job and side hustle, a bustling social life, and a consistent exercise regimen to wanting to do nothing but sleep. His employer eventually let him go, and Randy struggled to find the energy for his chamber choir—a group the bass II singer had helped establish many years prior.

The neurologist recommended Randy consult a psychiatrist, but Randy suspected the anti-seizure medications were responsible for his fatigue. Plus, they weren’t effectively treating his seizures. He decided to seek opinions from other neurologists and received a recommendation for Barrow Neurological Institute.

The National Association of Epilepsy Centers recognizes Barrow as a Level 4 Comprehensive Epilepsy Center, meaning the Center is equipped with the expertise and facilities necessary to provide the highest level of medical and surgical evaluation and treatment for patients with complex epilepsy.

“That’s what Barrow specializes in: the refractory seizures,” Dr. Shvarts said. “For about 25 to 30 percent of the epilepsy population, medications don’t really work well. They might decrease the number or the intensity of seizures, but they don’t really stop them.”

Cut Out for Surgery?

Not long after Dr. Shvarts and Randy first met in 2017, the two started discussing treatment options besides medication, offering Randy sparks of newfound hope. “We’d tried a number of medications, and either we were having side effects or they weren’t working,” Dr. Shvarts said. “The next step is to evaluate whether somebody is a candidate for resective surgery or an approved stimulation device.”

Randy spent a little over a week in the Epilepsy Monitoring Unit at Barrow, undergoing continuous video recording and EEG monitoring of his brainwave activity while off his anti-seizure medications in an attempt to pinpoint the source of his seizures.

The testing pointed to the right side of Randy’s brain as the culprit for most of his seizures, indicating he might be a good candidate for a surgical procedure known as a resection to remove that particular area. However, something gave Dr. Shvarts pause: During Randy’s hospital stay, the video recording captured a seizure that did not correlate with EEG findings.

Portrait of Barrow Epilepsy Center Director Dr. Vladimir Shvarts
Vladimir Shvarts, MD, FACNS, Director, Barrow Epilepsy Center

“I definitely knew that we missed it,” Dr. Shvarts said. “We had no idea where that one was; the electrodes were not in the right place for that.”

Additionally, neuropsychological testing showed that the right side of Randy’s brain was supporting his memory and language functions, meaning resection could result in some deficits. There was also a possibility that removing that part of Randy’s brain could negatively impact his mood and behavior. Dr. Shvarts felt that the benefits of surgical resection, an invasive and irreversible procedure, did not outweigh the risks in Randy’s case.

When Dr. Shvarts consulted with multidisciplinary experts at a routine surgical conference, the group didn’t reach a consensus on the best course of treatment for Randy. Dr. Shvarts shared the news with Randy at their next visit, explaining the different perspectives. “We always want to respect the patient’s autonomy,” Dr. Shvarts said. “We want to make sure that the patient has the final say and that they’re participating in the decision making.”

Randy and Dr. Shvarts agreed to explore a more conservative option: a responsive neurostimulation (RNS) device. “Devices can give you that middle ground,” Dr. Shvarts said. “It’s an invasive procedure, but it’s not exactly resection.” 

Finding ‘Middle Ground’ with Responsive Neurostimulation

RNS involves implanting electrodes in the parts of the brain where seizures arise. After three months of passively recording brainwaves, the device is programmed to detect and regulate the brain’s abnormal electrical activity—similar to the way a pacemaker corrects abnormal heart rhythms.

Dr. Shvarts and Randy Ehlers review data from his responsive neurostimulation device.

“The device can be extremely effective if you put it in the right place and if you let it learn over time what a seizure looks like, and obviously it’s individualized,” Dr. Shvarts explained. “So fast forward: The device worked, but it became very apparent—because we have electrodes sitting on the right and left—that we had seizures coming from both sides of the brain.”

That’s when Randy began referring to his neurologist as “Superman,” a nickname Dr. Shvarts humbly describes as generous.

While the device offers the acute component of stopping a seizure in its tracks, the ongoing stimulation can benefit patients in the long term by actually inducing rewiring of the brain’s electrical network. “So we see both effects: We have less big seizures and, over time, we start seeing less and less seizures in general,” Dr. Shvarts said.

Most notably, Randy hasn’t experienced any tonic-clonic seizure symptoms since the activation of his device in 2019.

A Work in Progress

At about 6 feet, 4 inches tall, Randy is likely to collide with something when falling to the ground and thrashing about during a tonic-clonic seizure. In fact, he’s broken ribs, blacked out both of his eyes, and cut up his legs and feet during seizure episodes.

Once, while recovering from a seizure, Randy accidentally flooded his and his neighbor’s condos. He doesn’t remember exactly what happened—memory loss and disorientation are common during the “post-ictal” phase—but he does remember waking up to his neighbor pounding on his door, stepping out of his bed and into water, and realizing he had left a faucet running.

The longer Randy goes without a big seizure, the more comfortable Dr. Shvarts feels with Randy’s decision to live alone. He also feels reassured by Randy’s strong support system, which includes a network of loyal friends who check in on Randy daily and help with anything he needs. One of them is a friend from junior high school who still sings with him in his chamber choir. She often drives him to appointments, as Randy is unable to drive himself due to his medication side effects and seizure activity.

“We want to make sure that the patient has the final say and that they’re participating in the decision making.”

Vladimir Shvarts, MD, FACNS, Director, Barrow Epilepsy Center

Driving is the thing Randy longs for the most from his life before his diagnosis. He also misses having a hearty appetite, joking that he used to make Chinese buffets quiver in fear, and being in the workforce. “I call myself a poverty-stricken gentleman of leisure, and that’s with a bit of salt, because I would rather work,” he said. “I’m just tired of being tired.”

Still, Randy describes himself as the luckiest man in the world—expressing gratitude for his friendships, his comfortable (albeit quiet) life, and his personal Superman.

Randy and Dr. Shvarts both remain hopeful they can gradually peel away some of Randy’s medications over time with help from the device and that Randy will feel less like a self-proclaimed “hungover zombie.” When it comes to epilepsy treatment, Dr. Shvarts said, there’s often a trade-off: balancing quality of life versus quantity of seizures. “For every individual, that calculus differs,” he added.

They’re learning more about Randy’s seizures all the time and the way seizures behave in general, thanks to the fact that RNS devices collect valuable EEG data from patients’ brains 24 hours a day, seven days a week. When Randy first provided his medical history to Dr. Shvarts, he noted that his big seizures seemed to occur about every three months. The EEG data from his device correlates with his estimate, revealing a cyclical pattern in Randy’s seizure activity.  

“That gives us yet another target to go after,” Dr. Shvarts said. “Around that time, we can potentially increase the stimulation or give more medications. And as time has progressed, that peak, even though you still recognize it to some degree, is flatter and flatter.”

Like Family, But With ‘Superpowers’

Dr. Shvarts said complex cases like Randy’s make him a better physician, but he admits he sometimes feels frustrated that he can’t offer every patient a cure. “When you’re a generalist, there’s always somebody who knows a little more, but when you become a subspecialist, you either know or you figure it out,” he explained. “You are the neurology consult; you are the epilepsy consult. So there’s always this pressure of, OK, what’s next? What’s the plan B?”

But Dr. Shvarts reminds himself and his trainees that even when they reach the edge of what they can do for someone medically speaking, that doesn’t mean they’ve reached the edge of what they can do as a human being for another human being.

That philosophy resonates with Randy, who chokes back tears as he remembers a time when he was in the hospital and found comfort in simply having Dr. Shvarts hold his hand. Randy also looks forward to his visits at the Barrow Epilepsy Center, where he and Dr. Shvarts share life updates and laughter.

“There’s a connection there that I don’t have with other doctors,” Randy said. “I trust this man. There’s a reason why I call him Superman.”

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