‘I don’t have seizures anymore!’
11-year-old Indiana boy with severe epilepsy undergoes rare operation to disconnect two sides of his brain
All his life, 11-year-old Zach Kurek had suffered from multiple debilitating seizures a day, often triggered by being startled. A sudden noise like a dog barking could cause his body to lock up, and he’d suffer dangerous falls, causing severe bruising, in some cases breaking teeth and even bones.
But recently, as Zach got out of his mother’s car, a gust of wind flung the door against him and he braced himself for a convulsion. This time, nothing happened.
“Oh, yeah,” he told his mom. “I don’t have seizures anymore!”
Zach’s newfound freedom followed a rare and risky surgery at University of Chicago Medicine to disconnect the two sides of his brain. While such a disconnection can be debilitating in a healthy brain, Zach had suffered a stroke at birth that severely damaged the left hemisphere of his brain, creating a storm of electrical impulses that arced to his right brain and caused his problems.
Living with his mom in northwest Indiana, Zach had been on medications to control his epilepsy, but he was still plagued by seizures, which coupled with his stroke had delayed his development. On top of that, the powerful medications at times caused severe side effects.
Zach suffered severe mood swings, occasionally flying into fits of rage. His mother, Amanda Morey, said she had to sometimes grab his arms and legs and carry him to his room and hold the door shut for a few minutes. He would emerge feeling terrible, apologizing and saying he didn’t know what happened. He became depressed and had trouble sleeping,
Eventually, his mom realized, “We can’t do this anymore.”
While Zach’s surgical treatment was unusual, his condition was not. Epilepsy affects somewhere around 2 million people in the United States, and 50 million worldwide, and can be caused by a variety of factors, according to the Epilepsy Foundation. While most cases can be managed with medication, it’s thought that about one out of three can’t be adequately treated. In those intractable or “refractory” cases, patients may choose to try surgery.
In Zach’s case, his neurologist and epileptologist, Dr. Julia Henry, realized the changing and increasing medications no longer appeared to be helping him, and his condition was getting worse, with dozens of seizures a day. While in many cases the cause of seizures is uncertain, in Zach’s case it was clear that it was caused by the damaged portion of his brain, which made him a good candidate for surgery.
The operation to unplug the two sides of the brain is rare, but not unheard of. Previously, the disconnection often was accomplished by removing half the brain — called a hemispherectomy. One study of such surgeries found that 80% were seizure free or had major improvements. A recent review of research on the subject found the benefits generally were long-lasting.
But cutting open the skull for the procedure is fraught with risks, such as infection and inflammation, and possible partial paralysis. So after consulting with a team of doctors at University of Chicago, neurosurgeon Dr. Peter Warnke recommended a minimally invasive laser hemispherectomy, a surgery that medical literature indicated had been done only once before.
Instead of a large incision, Warnke would make five small holes, the diameter of raw spaghetti, and insert laser fibers to burn off the connections between Zach’s hemispheres and from the left hemisphere to the rest of his body.
Because of Zach’s prior brain injury, doctors believe that the right side of his brain had already learned to take over much of its duties, so any negative impacts from the operation would be minimal.
Still, the decision on whether to try brain surgery was terrifying for Zach’s mother.
“If something bad happened, I would never forgive myself,” she thought. Rather than impose her decision, she left it up to Zach. He initially resisted, with his favorite refrain, “I’m just a kid you know.”
Until one day, after not being able to go anywhere without his mother in case he suffered an attack, and exhausted by the barrage of attacks on his body, Zach said, “I don’t want to have seizures anymore.”
In February, at the Center for Care and Discovery in Hyde Park, Warnke mapped Zach’s brain with special imaging and then performed the laser surgery, using a constant CT scan to guide him.
The surgery took eight hours. For the next week, Zach lay in bed, waking up only briefly to say a few words and go back to sleep. Eventually, he fully recovered, and has had no seizures since the operation.
Now Zach is “a different child,” Warnke said. He called the new type of surgery a major breakthrough, and said he would perform future surgeries with the help of a robot to insert the lasers more quickly and precisely, potentially reducing the time in surgery by hours.
If this approach gets the same long-lasting results as traditional methods, with fewer side effects, Warnke said, that would be game-changing.
“That’s one of the most rewarding procedures you have in neurosurgery,” he said. It’s especially gratifying when a patient’s seizures cease, and their mental development progresses.
Dr. Henry shared that sense of optimism.
“It is heartwarming, because we’ve seen these children and their families suffer,” she said. “The whole family’s life revolves around these seizures. It’s really like having a new child … Now they can go out and do things, and their functioning just blossoms.”
Zach is attending classes by Zoom, and looks forward to returning to school in person this fall.
His mother, a single mom and former FedEx driver, feels a huge sense of relief and elation.
“Now, I haven’t seen this kid in a bad mood,” Morey said. “We let him go out in the backyard when he wants to now. Just being able to have that independence, he loves it.”
Her son is more focused and can give answers to questions in school that he knew before, but it took him too long to get the answer from his brain to his mouth, she said. Zach still speaks with a heavy stutter that makes it difficult for strangers to understand, but his mother understands him.
“I feel good,” he said while taking a break from his school work. “Surgery fixed me right up.”