November is National Epilepsy Awareness Month. If you or someone you know is living with seizures, Atrium Health Neurosciences Institute can help. Find out more about our comprehensive epilepsy care here.
These days, Matt Burke, CRNA, finds himself thankful when things feel “normal.” As a nurse anesthetist at Atrium Health Cabarrus, he’s been on the front lines of the COVID-19 pandemic, working hard to ensure patients get the care they need.
“It's a blessing that normalcy and relaxation are present for me – these things aren't taken for granted,” he says.
But it’s not just the mayhem of 2020 that spurred Burke’s deepened appreciation for the simple things. Rather, it dates back to 2012, when he experienced something that would change the course of his life forever: his first seizure.
A lifechanging diagnosis
It happened while Burke was working at the hospital. He was walking a patient into the post-anesthesia care unit, and as he prepared to give his report, he found himself unable to speak.
“The words that were coming out of my mouth were absolutely garbled. There was no sentence structure. There was no pronunciation,” Burke recalls. “And I was standing there looking at my teammate, and she was looking at me, and we were both in a panic.”
Burke’s teammates quickly rushed him to the emergency room, where he underwent several tests to find out what caused his frightening symptoms. On his MRI, doctors found evidence of Mesial Temporal Sclerosis (MTS), or scarring in a deep part of his left temporal lobe. While the exact cause of MTS is unclear, MTS is a common cause of epilepsy, or seizure disorder.
Burke had never heard of MTS before, and he certainly never expected to be diagnosed with epilepsy at age 42. He was active, had a young family and a career he was passionate about – and the diagnosis quickly turned his life upside down.
Sinking into a hole
After his first seizure, Burke began experiencing regular focal seizures with impaired awareness, sometimes referred to as auras. At his worst, he had one every two hours.
“My auras were similar to sinking into a hole,” he explains. “It becomes very dark, and you start shaking and you can't talk. It gets really dim around your eyes and you feel like you're completely going to die.”
As a nurse anesthetist, he provided anesthesia, or medication that prevents a patient from feeling pain during a surgery or procedure. And as with any clinical profession, patient safety is a top priority in anesthesiology. Given Burke’s condition, he was forced to step away from the job he loved and work non-clinical roles. It was too risky that he’d experience a seizure while caring for a patient.
“When something in life that you're used to, something that seems ordinary, gets taken away – that’s what epilepsy did to me,” says Burke. “I was terrified.”
Finding the right care
After his seizures began, Burke saw a neurologist who prescribed him anticonvulsants (anti-seizure medications) but ultimately couldn’t help him get his seizures under control. Burke wasn’t ready to give up and pushed for a second opinion.
In 2015, he connected with his colleague, Jeffrey Bodle, MD, a neurologist at Atrium Health Cabarrus, who sent him to Ilona Humes, MD, an epileptologist at the same facility. Atrium Health Cabarrus is one of Atrium Health’s two Level 4 epilepsy centers designated by the National Association of Epilepsy Centers. Level 4 epilepsy centers provide the highest level of specialized care.
“Seeking care from a designated epilepsy center is very important, just like it’s important to see a specialist for any other disorder,” says Dr. Humes. “Patients shouldn’t settle for whatever number of seizures they have in a month, or even a year. It should be zero seizures – that should be the goal. In Mr. Burke’s case of MTS, although it manifests often as refractory epilepsy (or epilepsy that can’t be controlled with medication), it is amenable to surgery with very favorable outcomes.”
In some cases, a patient or their loved ones may not even realize they’re having seizures. While people often picture violent, uncontrollable body shakes when they think of seizures, there are actually many different types, some of which are a rather subtle behavioral change or even undetectable to the untrained eye. According to Dr. Humes, this means epilepsy can go undiagnosed or under-treated for a long time – and the sooner a patient can get to a specialist, the better to achieve the best seizure control possible.
“We have a really comprehensive, multidisciplinary approach, which allows us to move patients through the epilepsy evaluation process in a timely, and disciplined manner,” says Dr. Humes. “And with our virtual capabilities, we can provide epilepsy care for patients in remote areas where they may not have access to epilepsy specialists.”
As a team, Burke and Dr. Humes were determined to get his seizures under control. And based on his history, Dr. Humes knew they needed to be more aggressive with his treatment in order to achieve total seizure freedom and recommended an evaluation for epilepsy surgery.
Working toward a full recovery
To determine if surgery was a treatment option, Burke underwent monitoring at the highly specialized epilepsy monitoring unit at Atrium Health Cabarrus. Next, his case was discussed at a multidisciplinary epilepsy surgery conference, including epileptologists, neurosurgeons, radiologists, psychologists and psychiatrists. The conference is used to ensure the whole team agrees on the outcome of the monitoring and the next steps in the plan for surgery.
Mark Van Poppel, MD, a neurosurgeon with Carolina Neurosurgery & Spine Associates, was part of the epilepsy surgery conference that discussed Burke’s case.
“The partnership between Carolina Neurosurgery & Spine Associates and Atrium Health has really been very beneficial to the community and patients, like Matt, in general,” says Dr. Van Poppel. “Together, we've had the opportunity to advance epilepsy care in the Charlotte region, not only with respect to the diagnostic implications or the diagnostic procedures that we have for our epilepsy patients but also from a therapeutic standpoint.”
The epilepsy conference agreed that Burke could move forward with surgery. “On further evaluation of Burke’s epilepsy, it was found that he actually was suffering from a type of epilepsy that could often be cured with a surgical procedure,” says Dr. Van Poppel.
Burke was scheduled for a mesial temporal lobectomy with Dr. Van Poppel in October 2016. During the procedure, which took place at Atrium Health Carolinas Medical Center, Dr. Van Poppel carefully removed the precise part of Burke’s brain that caused his seizures.
As was expected, following his surgery, Burke required rehabilitation to help his speech and memory make a full recovery. But he says it was all worth it. Since his surgery four years ago, Burke has been seizure-free, and he hasn’t experienced any lasting side effects. He’s back at work at Atrium Health Cabarrus as a CRNA and relishes the opportunity to give back to his community.
“Dr. Van Poppel told me the recovery would be tough, and he was right. But the end product of all the toughness has turned me into somebody who continues to proudly devote their life to healthcare,” says Burke.
Never quit trying
In the darkest days of his epilepsy, Burke felt hopeless. But since meeting Dr. Humes and undergoing his surgery, Burke has a new appreciation for each day and urges others in his shoes not to give up. “When you’re aware of how bad things can get, you keep going forward step by step and you never quit trying,” he says.
According to Dr. Humes, patients with epilepsy should see an epileptologist even if they’ve already seen a neurologist and gotten medication for their seizures.
“It’s always important to have a specialist to review the case and make sure patients are on the right medicine and will continue to do well,” she says. “If a patient continues to have seizures, even infrequently, we have to look at other options to control it, including epilepsy surgery and devices such as VNS, RNS, DBS, etcetera. Seizure-freedom without any side effects from medication should be the ultimate goal for all patients.”
Reflecting on his experience, Burke agrees that seeking care from a specialist is the best thing someone with epilepsy can do.
“The biggest thing that helped me was hope. Hope is finding a doctor who is able to educate you in the simplest terms, even if you're not a medical person – a doctor that can explain what’s occurring, what they're going to look for and the things they can do to help,” he says. “I really think that it saved my life.”
To find an epileptologist or learn more about Atrium Health’s comprehensive epilepsy care, visit AtriumHealth.org/Epilepsy
To support epilepsy care at the Atrium Health Neurosciences Institute, please click here and select the Carolinas Epilepsy Fund. Your donation will support vital patient services and research.
