After 24 years of persistent and debilitating seizures that made sleep near impossible, Chris Murto — an Arizona resident — is pursuing the independent life he always dreamed of thanks to the surgeons at Barrow Neurological Institute at St. Joseph’s Hospital and Medical Center. Up until two months ago, a tumor in the area of his brain considered too risky for surgery was causing up to 250 seizures a month.
“At one point, I was having a seizure every few minutes,” said Murto. “It’s impossible to explain the amount of pain I was experiencing.”
Around one out of every 200,000 people is affected by hypothalamic hamartoma (HH) tumors. While they are considered benign, HH tumors can lead to extensive cognitive damage due to years of gelastic seizures.
"The cells are like a little pacemaker that fires abnormal signals and cause a rare kind of gelastic seizure," Peter Nakaji, M.D., Chris’ neurosurgeon at Barrow, told ABC News. "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.”
At the age of 13, Chris’ seizures were starting to have life-altering effects, including a drop in his IQ from 120 to 70. Antiepileptic medication and a strict diet that called for more fat and less carbohydrates failed to cure his constant seizure episodes. The tumor’s presence in the area of the brain known as the hypothalamus made surgery a risk.
"We put him in the hospital because he would not stop seizing. He had a seizure every three minutes. And they became painful, he would grab his chest and roll on the floor and say it hurts, it hurts," explained Chris’ mother, Maura Murto. "And he even asked why doesn't God just let me die? At thirteen."
Finally, in November, a glimmer of hope shined through when Chris and his family found out that he been selected to undergo a minimally invasive form of surgery that utilizes MRI-guided laser technology.
Following an approximate two-millimeter incision, surgeons at Barrow were able to locate and radiate the tumor mass. Once the hamartoma is heated up and broken down, the body absorbs the cells.
“Before this type of technology, patients with HH had to undergo invasive surgery to remove the mass,” said Dr. Nakaji. “The new laser surgery is minimally invasive, usually requires a single stitch, and one night’s stay in the hospital.”
Two months later, Chris is seizure-free and enjoying life. He plans on pursuing a career in computer programming and hopes to share his story with other people affected by HH tumors.