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For years, Keeley Allen and her family lived in fear that a seizure would strike and render the teen helpless. Unresponsive to medication, the seizures were unusual and ambiguous. Worse than the unpredictability of the seizures was the uncertainty about how to make them stop. At Mayo Clinic, however, the family's concerns about Keeley's seizures finally were put to rest.
Like most new drivers, Keeley Allen was elated when she got her license. But for Keeley, getting a driver's license signified more than it does for many teens. It marked a new phase in her life — one where she's no longer at risk for epileptic seizures.
In October 2018, after years of searching for effective treatment for seizures that didn't respond to medication, Keeley underwent a specialized brain surgery at Mayo Clinic that targeted the area in her brain triggering the events. Since then, Keeley, who lives with her family in Aurora, Nebraska, has been seizure-free and leading a typical teenage life.
"We went around the table at Thanksgiving and talked about the things we're thankful for, and Keeley said freedom and independence," says Keeley's mom, Suzanne. "We're finally seeing her do things that most teenagers are doing. To see her tackle those things and not have the constant fear of when she'll have the next seizure — it's been amazing to see how her life and perspective have changed."
The change in Keeley was made possible through the dedication of epilepsy specialists in Mayo Clinic's Department of Neurology. Careful monitoring allowed Keeley's team, which is headed by Lily Wong-Kisiel, M.D., to provide treatment tailored to the teen's condition.
"We'd never seen so much care taken with Keeley," Suzanne says. "Because of our location, there just aren't the resources available that Mayo Clinic has. I'm not sure we'd be in a position to say we were a year seizure-free if it hadn't been for them."
Long road to a medical home
Keeley's path to Mayo Clinic spanned several years and states. After her first seizure at age 10 in her fifth grade classroom, she received care from a neurologist in Omaha, Nebraska. That neurologist diagnosed Keeley with confusional migraines — a rare kind of migraine that can cause headache, memory loss, blurred vision, speech impairment, agitation and anxiety.
Although Keeley's episodes involved some of those symptoms, the medication she was prescribed for the migraines didn't work. "Things kept getting worse," Suzanne says. "These episodes — we didn't know what to call them. They weren't grand mal-type events. A lot of times, she would stare off into space, and her right side would get real stiff and rigid. She would scream, and it was like she was super stiff and just not with it."
Keeley never remembered the events, but she recalls that each of them was preceded by double vision. "The best way to describe it is when you cross your eyes. That's the sort of double vision I had," Keeley explains.
"I just kept longing and hoping we could get to somewhere that could help us navigate through this journey."
Suzanne Allen
As Keeley's seizure activity escalated and the time between them decreased, the family sought a second opinion with another neurologist in Omaha. He diagnosed Keeley with epilepsy. "No one wants to hear their child has to deal with something like that, but it was a huge relief," Suzanne says. "We had a name for it."
When that neurologist unexpectedly resigned, the Allens sought care for Keeley from a neurologist in Iowa City, Iowa, but it wasn't a good fit. "There wasn't a lot of follow-up," Suzanne says. "When you're in the throes of consistent seizure activity, all you want is to be able to talk to someone. I just kept longing and hoping we could get to somewhere that could help us navigate through this journey."
That place turned out to be Mayo Clinic, where the Allens went at the urging of Keeley's hometown pediatrician. "I wrote a letter to Mayo that was basically me pleading, saying: 'I don't know what to do anymore. Would you please see her?'" Suzanne says.
Mayo responded with an appointment itinerary for Keeley, and in April 2016, the family drove to Mayo Clinic in Rochester.
Brain mapping pinpoints unusual activity
The Allens knew immediately that Mayo Clinic was the medical home they'd been seeking. "The first time we went there, we were met in the waiting room by three doctors who said they were part of Keeley's team," says Keeley's dad, John. "That initial feeling is like: 'Holy cow. They are serious about what they are doing there.' After that, it didn't go anywhere but up."
Among the first doctors Keeley met was Dr. Wong-Kisiel, who recognized Keeley's case was not cut and dry. "Her seizures had been thought to be psychogenic or nonepileptic because she was having these intense screaming components and some convulsions," Dr. Wong-Kisiel says. "It was quite challenging to see if it was behavioral or all seizure. But with careful evaluation, we were able to show the events — which might look suspicious to be mimickers of seizures — were in fact seizures coming from the parietal region."
The brain's parietal lobe is responsible for processing sensory information, such as warmth and pain. It's not usually an area associated with seizure activity. Keeley's parietal lobe, however, had been damaged before she was born by trauma she suffered in utero that resulted in a hemorrhage.
To better understand the origin of Keeley's seizure activity, in late June 2018, she underwent a brain mapping procedure called stereoelectroencephalography, or stereo EEG, which was performed by Mayo neurosurgeon Jamie Van Gompel, M.D. During the procedure, several electrodes were implanted into Keeley's brain. After that, when a seizure struck, the electrodes would record the activity. To increase the chance of a seizure, so it could be recorded, Keeley's care team had her stop taking all anti-seizure medication.
"You think they're going to pull her off the medication, and it's going to be quick because she had a seizure every other day while on the medication," Suzanne says. "We get there and take her off the medication, and then we sat and waited."
Waiting for a seizure to strike can be difficult for patients who undergo stereoelectroencephalography because they are tethered to machines. But the nurses who watched over Keeley made the wait — all 28 days of it — bearable. "We developed some really great relationships with the nurses while we were there," John says.
Laser surgery preserves function
When Keeley finally had a seizure, the electrodes generated data that created a detailed image of her brain. That information helped her team of neurologists, neuroradiologists and neurosurgeons assess how vital pathways in the brain lined up with the seizure focus — the region in the brain where the abnormal activity originated. From there, they could create a treatment plan that would minimize damage to Keeley's vision and language function, Dr. Wong-Kisiel says.
"Keeley's is a case I keep in mind because she was not thought to be a surgical candidate when she was first discussed at the (surgical) conference," Dr. Wong-Kisiel says. "But we regrouped and thought more about it."
Ultimately, members of the surgical conference agreed that the best option for Keeley would be laser ablation, a minimally invasive approach that would preserve Keeley's speech and vision, while disrupting the network of abnormal electrical signals that was triggering her seizures. Dr. Van Gompel performed the laser ablation in October 2018. During the procedure, Dr. Van Gompel drilled a single 1-millimeter hole into Keeley's skull and inserted a laser fiber into the seizure focus.
"What is really cool about Keeley's surgery is we effectively did her whole treatment without ever really making a true incision."
Jamie Van Gompel, M.D.
Because Keeley's seizure focus was in an atypical area, her team was somewhat apprehensive that treating the tissue not by removing it but by injuring the healthy brain over it could cause unanticipated problems. However, since Keeley's treatment was performed using lasers, without needing to remove the skull, the misbehaving tissue was treated with low risk to Keeley.
"What is really cool about Keeley's surgery is we effectively did her whole treatment without ever really making a true incision," Dr. Van Gompel says. "The monitoring and treatment were all done with less than 2-millimeter incisions, which sped recovery, virtually eliminated pain and reduced complications."
Following the procedure, Keeley was moved to her hospital room, which her dad had arranged for a lengthy stay. But that evening as Keeley's team examined her, the family got some stunning news. "They said: 'We'll check her out tomorrow. If everything looks OK, we'll send her home,'" John recalls. "When they said that, it was like my jaw was on the floor. But Keeley was doing great." The following day, Keeley was discharged from the hospital, and the family returned home.
Living fearlessly with gratitude
Since surgery, Keeley has been seizure-free — a result of most of the tissue involved in the seizures being treated. Because the section of Keeley's brain where the seizures originated involved areas that control critical brain function, a fraction of the abnormal tissue had to be left behind after surgery. As a result, to counter any potential abnormal activity, Keeley continues to take anti-seizure medication.
"Our emphasis and counsel to the family was that we were going to preserve function," Dr. Wong-Kisiel says. "We knew the seizure focus overlapped with language function, so Dr. Van Gompel ablated as much as could safely be done to make sure she could leave the operating room as a functioning teenager taking AP (Advanced Placement) classes. That was a priority, and we were able to achieve that."
"We're starting to see the life come back. She radiates a little bit more, and she stands a little bit taller."
Suzanne Allen
Keeley, a high school senior planning to go to college in the fall, is relishing her renewed ability to actively take part in life. And her parents can see a marked difference in her. "She's not napping during school. She's not going to bed at eight," Suzanne says. "We're starting to see the life come back. She radiates a little bit more, and she stands a little bit taller."
In place of the fear that used to be a daily part of life, gratitude has grown — for good health, a bright future and the people who made it all possible.
"When we went back in October, Dr. Wong-Kisiel asked us if there was anything she could do, and Keeley said, 'I just want to say thank you to Dr. Van Gompel,'" Suzanne says. "So Dr. Wong-Kisiel paged him, and Dr. Wong-Kisiel, Dr. Van Gompel and Keeley all got on the phone. It was important to her to be able to express that gratitude to those two people who were just so instrumental in making this happen."
HELPFUL LINKS
- Learn more about epilepsy.
- Read about minimally invasive epilepsy treatment options.
- Check out the Department of Neurology.
- Explore Mayo Clinic.
- Request an appointment.
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