Chris Murto’s silent seizures started when he was a baby, and his doctors thought he was just having night terrors.
“He rarely slept more than two hours at a time,” mom Maura Murto, 59, of Sedona, Ariz., said. “He would wake up and look startled, then begin to cry.”
By the time he was in kindergarten, he would get tense and stiffen up and look terrified, but it always happened when he was asleep.
“His face would grimace and a slight tear would roll down his cheek,” she said.
Doctors diagnosed a rare type of benign tumor — a hypothalamic hamartoma (HH) — that would eventually cause up to 350 seizures a month by the time he was 13, and put him on medication, sometimes 25 pills a day.
WHAT TO KNOW
Hypothalamic hamartomas are an abnormal collection of cells in the brain.
The tumor acts like a pacemaker that fires abnormal signals that cause a seizure.
In gelastic seizures, a child can explode with crying or laughter.
Only one in 200,000 are affected by this rare condition.
But today, at 29, Murto is seizure-free, thanks to Barrow Neurological Institute at St. Joseph’s Hospital and Medical Center in Phoenix, the first in the country to treat HH tumors. The surgeons used new, minimally invasive laser-surgery techniques to burn out the tumor in his brain.
These gelastic seizures involved a sudden burst of energy, usually in the form of laughing or crying and can be uncomfortable. They can damage the brain and lead to progressive cognitive impairment.
“When someone said seizures, I thought grand mal with someone on the floor,” his mother said. “Innocently, I didn’t know what we were dealing with.”
Beginning when he was 5, Chris’ parents logged his daily seizures on a chart, but they began to worsen as he grew older, disrupting his thought process and ability to learn. His IQ even dropped to 79 from 120 and his parents were told he would never live independently.
“He had tremors in his hand, his eyes rolled up in his head so you could see the whites, he slept a lot and his drool was out of control,” Maura Murto said. “He was losing ground mentally and physically.”
Chris Murto had thousands of seizures every year by the time he was 13.
“It’s impossible to explain the amount of pain I was experiencing,” said Chris, who’s father, Bill, co-founded the the Compaq Computer Corp.
“A small child can explode with laughter even when you look in their eyes and can tell they are not happy; it’s quite creepy.” — Neurosurgeon Dr. Peter Nakaji
Chris’ latest seizure chart has had all zeroes since he had surgery in August 2012.
Courtesy Maura Murto
Since having MRI-guided laser surgery, Chris Murto has had all zeroes on his seizure chart..
“Oh, my gosh, what a miracle for our family,” his mother said. “It was absolutely amazing. Now we have all zeroes on his chart.”
HH tumors are an abnormal collection of cells that sit at the base of the brain near the hypothalamus, affecting only about 1 in 200,000 individuals — only about 100 cases at any one time, according his neurosurgeon, Dr. Peter Nakaji.
“The cells are like a little pacemaker that fires abnormal signals and cause a rare kind of gelastic seizure,” he said. “A small child can explode with laughter even when you look in their eyes and can tell they are not happy; it’s quite creepy.
“They are basically like a computer that keeps resetting,” he said. “You can imagine how disruptive that is and what their life is like.”
Murto describes the seizures that lasted about 15 or 20 seconds each: “Did you ever have a dream where you feel like you are supposed to be somewhere and you wake up? You still feel kind of out of place, but it’s not the right place.
“I feel displaced for a little bit and I have a pulsing feeling in my left ear.”
In 1997, Maura Murto gave her then 13-year-old son a bucket of marbles so he could count his own nightly seizures. He placed one in a bag by his bed each time he had one.
“He had over 1,000 a month. The bag was overflowing with marbles everywhere,” she said. “I asked if he’d spilled the bag and he said, ‘No I lost count.'”