From epilepsy nightmare to ‘neuro ninja’

Not only did this young man’s brain surgeries stop his epileptic seizures. They also made him happier.
February 25th, 2019
A strong guy carries a big log in a Tough Mudder compeition.
Kyle Parker loves the outdoors and challenging himself in competitions. Seizures threatened to sideline him until he had two brain surgeries. Photo courtesy of Kyle Parker.

Kyle Parker lived steps from the Animas River as a college student in Durango.

After classes, he’d grab a kayak or raft and some buddies and plunge into the river.

Parker was equally fearless on rocky cliffs, scaling granite walls and working as a climbing instructor.

Then, out of the blue, when Parker was 25, he had a devastating seizure. He was home in his bathroom and the seizure sent him crashing into the tub. The convulsions were so violent that they broke his spine in four places.

The only good news was that Parker wasn’t dangling in the air on a rock face or alone on the river when the seizure struck. Had he been in the wrong place, he easily could have died.

As a baby, Parker had had seizures related to high fevers and ear infections, but he hadn’t had a violent one since then. He assumed he’d outgrown them. Unfortunately, after the brutal seizure in April of 2015, he was diagnosed with epilepsy and he began having violent seizures monthly, then weekly, and at his lowest point, nearly every day.

New surgery offers hope

Unfortunately, the first doctors Parker saw said there was little they could do since he wasn’t responding well to epilepsy medications.

Then, he found a team at the UCHealth Neurosciences Center at the Anschutz Medical Campus in Aurora, where doctors used a laser to destroy the parts of his brain that were causing the seizures. UCHealth University of Colorado Hospital is the only center in the region that offers what’s known as laser ablation surgery. The technique is still relatively new, and Colorado doctors have offered it only since 2015.

a man is rock climbing outdoors. We see him from below with a big cliff, pine trees and blue sky.
Kyle Parker loves climbing both outdoors, in places like Boulder Canyon, and indoors at a Denver climbing gym, where he and his fiancé train several times a week. Photo courtesy of Kyle Parker.

For Parker, the thought of succumbing to any kind of brain surgery, much less procedures that would destroy parts of his brain, was far scarier than any outdoor challenge he had ever tackled. But, as his seizures worsened, he decided to try the laser surgery. During his first surgery, doctors were conservative and burned away only the scars from his previous seizures. That surgery tamed Parker’s seizures for a couple of months, but they returned. During a second surgery, doctors removed a larger portion of Parker’s brain.

And the results were stunning.

‘I have lost nothing’

Now, more than 18 months since his second surgery, Parker has not had a single additional seizure. Despite losing parts of his brain, he’s functioning better than ever and emerged from his ordeal a happier person who is determined to live in service to others.

“I have lost nothing except for the seizures,” Parker said.

Weeks after his second surgery, when he got the OK from his doctors, Parker started training to make it onto the TV show, American Ninja Warrior. He hasn’t won a spot in the competition yet, but hopes to make it in 2020.

“I want to share my experience and help others who are diagnosed,” Parker said.

(Click here to watch Parker’s tryout video for American Ninja Warrior.)

Prior to his surgeries, Parker felt ashamed of his illness and his seizures. He was worried that he wouldn’t be able to live a full life, enjoying the outdoors. But, he had a strange and wonderful surprise after the second surgery.

Sara Horrocks, left, and Kyle Parker, right kiss in an engagement photo. They're leaning over two sides of a big boulder.
Kyle Parker with his fiancé, Sara Horrocks. The two met and started dating soon after Parker started suffering from violent seizures for the first time since he was a toddler. Horrocks supported Parker and the couple plans to marry this summer. Photo courtesy of Kyle Parker.

“It was the weirdest thing,” Parker said. “They burned the entire right hippocampus and 80 percent of my right amygdala. But I came out happier. I felt extremely positive and inspired to share my experience with others who have been diagnosed.”

Parker hopes that a spot on American Ninja Warrior would show kids with epilepsy or other adults who experience seizures that they can overcome their difficulties.

In the meantime, Parker is climbing again and is slated to marry his fiancé, Sara Horrocks, this summer.

A man crosses a white water on a churning river. He's sliding on a rope to get across.
Kyle Parker ropes up to cross white water. Photo courtesy of Kyle Parker.

On social media, Parker calls himself the “neuro ninja” and lives by the mantra: “simply live each day” or SLED. In addition to his job working for the Denver nonprofit, Wish for Wheels, which provides bikes and helmets to low-income kids, Parker has an event planning company called SLED Outdoors.

“I am extremely lucky,” he said, acknowledging that it may sound crazy to say he feels blessed. Yet, he does.

“I am happy that I was given the challenge of epilepsy. It has caused me to find a person inside myself that I didn’t know existed. It has showed me how strong I am.”

Stopping the seizures

Dr. Cornelia Drees, an epileptologist and an associate professor of neurology at University of Colorado, has overseen Parker’s care.

She said he was a great candidate for the laser surgery because scans of his brain showed doctors exactly where he had scarring from his childhood seizures. Those scars, in turn, provided Drees with a probable roadmap for Parker’s seizure pathways. Still, Drees had to do extensive pre-surgical testing.

Headshot of Dr. Cornelia Drees.
Dr. Cornelia Drees.

“We see a scar somewhere in the brain and have to make sure that the seizures match up with the scar. All of the brain, in theory, is capable of causing a seizure,” Drees said.

She also tested Parker’s memory.

“We put one side of the brain to sleep in order to test memory,” Drees said. “His scars were in the part of the temporal lobe that is called hippocampus, on the right side of the brain. The hippocampus is an important memory center and helps with short-term memory.”

The tests showed that Parker’s brain already had adapted to the earlier damage he had suffered by transferring his memory functions to the left side of his brain. Drees said it’s common to see this type of adaptation in epilepsy patients. And the results confirmed that Parker would be able to function well even after losing part of his brain.

“He had good memory function on that left side and didn’t have good function on the right side. When the hippocampus is scarred, it doesn’t function anymore,” Drees said.

“The main concern for him was memory loss,” Drees said. “All the tests confirmed he would not have major losses.”

Laser surgery is far less invasive and relatively painless compared to traditional brain surgery, Drees said. Traditional surgery for epilepsy requires doctors to crack open the skull and cut out parts of the brain. Pain and recovery time are greater.

With the laser surgery, doctors enter the brain through a small opening. Then, using real-time MRIs to guide them, they burn away parts of the brain, destroying tissue and pathways that cause seizures.

Parker had his first laser surgery in February of 2017.

Head shot of Dr. Steven Ojemann.
Dr. Steven Ojemann.

Drees coordinates all the care for patients and does the pre-surgical testing, while her colleague, Dr. Steven Ojemann, performs the laser surgery.

“Parker was seizure-free for a while, but the seizures came back,” Drees said.

That was not a surprise since the laser surgery is completely successful the first time only for about 50 percent of patients. The team opted for a second surgery in August of 2017 to remove a larger section of the hippocampus and Parker’s seizures stopped.

‘Happy and in love’

Drees recently saw Parker for a follow-up visit and marveled at how well he’s doing both physically and emotionally. She said it’s common for people who have had seizures to become much more content once the seizures stop.

Kyle Parker recovers in a hospital bed after brain surgery.
Kyle Parker had to endure two brain surgeries. Doctors were able to burn away the parts of his brain where scarring was causing seizures. The seizures have stopped. Photo courtesy of Kyle Parker.

“He’s now very happy,” Drees said. “Seizures are associated with a higher rate of depression and anxiety. They change the brain chemistry when they happen. It’s not unusual for people to be profoundly depressed after a seizure. Stopping the seizures and possibly removing part of the amygdala that is responsible for fear sensations has made him happier.”

Kyle Parker found himself feeling euphoric after surgeries that stopped violent seizures. He’s committed to a life of helping others and now works for a Denver non-profit called Wish for Wheels. Photo courtesy of Kyle Parker.

While Parker and his parents thought his seizures had stopped in childhood, Drees thinks it’s likely that he had continued to experience subtler forms of seizures for many years.

“During convulsive seizures, you stiffen and jerk,” Drees said.

But people can suffer temporal lobe seizures without the convulsions, she said.

“They might not fall. But they can have bizarre movements, like lip smacking,” Drees said. “Parker had what’s called an aura, a funny feeling that is triggered by the onset of a seizure. Symptoms of déjà vu are relatively common in temporal lobe epilepsy which is related to the temporal lobe being part of the limbic system, which controls emotion and memory.”

Since about first grade, Parker had had episodes of nausea during which he always smelled a familiar scent.

“It smelled like summer, like fresh cut grass,” Parker said.

Parker struggled with dyslexia and he remembers feeling nauseous when he was struggling to read. Seizures can worsen when people are tired or feeling stressed.

Drees said it makes perfect sense that Parker associated the nausea with a particular scent because the hippocampus is linked to the sense of smell.

“I actually think that he had had seizures for much longer. When these seizures happen (even the non-violent ones) they can add to scarring and can continue damaging the hippocampus,” Drees said.

Since Parker has experienced strange symptoms with his brain nearly all his life, finally getting rid of them could very well make him happier.

“I think it’s fantastic,” Drees said. “It’s the best outcome. He feels free.”

She said it’s common for epilepsy patients to live with a sense of dread since they can experience seizures at any time.

“They lead to embarrassment and a sense of caution. You’re not allowed to drive. You worry you can’t have a job. They cause humiliation and restrictions.

“He got rid of all his chains. He is happy and in love,” Drees said.

‘I was reborn’

Parker and Horrocks met during the summer of 2016 when both were working in Boulder at a camp for kids called Avid4 Adventure.

He taught climbing and survival skills while Horrocks worked with younger children.

They met when Horrocks spread the word among counselors that she wanted to learn to climb. Parker offered to take her. The two cemented a strong friendship before dating. Parker shared his history of seizures, but he wasn’t having many at first. Then, as the two became closer, Parker’s seizures worsened.

“His eyes rolled back in his head. It was really scary and very violent,” Horrocks said. “Once he turned blue.”

During one seizure, Parker had been in the bathroom with the door locked when Horrocks heard him crash to the floor. She booted the door down to tend to him.

Although the two were newly dating as the seizures worsened, Horrocks said she never thought of bailing on the relationship.

“I love him. If someone I love is having trouble, I can’t just run away,” she said.

A young man stands in a river with his arms outstretched. He's celebrating life after seizures.
Kyle Parker celebrates after brain surgeries that halted violent seizures. Photo courtesy of Kyle Parker.

Now, the couple is planning their wedding for July in the Colorado mountains. They enjoy snowboarding and backcountry adventures. And, they climb together nearly every day at a Denver gym called Movement Climbing + Fitness. They always wear helmets and use special safety gear that locks in case Parker has another seizure.

The wedding will be the culmination of many celebrations since Parker emerged from his second surgery. In August 2017, once he had his staples removed about two weeks after his second surgery, he headed out to celebrate his new life.

“I ran straight to the river, the North Fork of the South Platte River outside of Conifer, Colorado. The objective? To dunk my head in the fresh mountain river!” Parker wrote on his blog.

“The water felt amazing. Joy poured over my face as the frigid water reminded me that I was alive. Standing there in the sun, I was reborn, my sense of positivity renewed and my ambitions set to full throttle.”

The couple held another celebration in August, his first anniversary of being seizure-free. They joined friends in Boulder Canyon to climb and celebrate life. That day, Parker climbed the toughest route he’s ever done outdoors.

“The whole experience felt like I had finally made it to a landmark,” Parker said. “I’m 100 percent seizure-free. That’s such a weight off my shoulders.

“I can drive. I’ve got a job I love and a wedding to plan for,” Parker said. “It’s all incredible.”