Garrett and dad enjoying the beach.
By Erica Gadbois
“Mrs. Chase, Mrs. Chase! I think Garrett had a seizure!” As Kathy Chase arrived to pick up her son from school in November 2016, two of his friends frantically rushed to her car with the jarring announcement. Just hours later, Garrett, then 16, had another episode at their Escondido home, his body moving out of his control. His family had seen something unusual in Garrett’s behavior once before — “we thought he might have had low blood sugar; he just walked around and seemed confused,” Kathy recalls — but nothing like this. Where was this coming from?
Looking for answers, Kathy and Garrett’s father, Dan, made an appointment for Garrett to see Michael Zimbric, M.D., a Rady Children’s neurologist and an associate clinical professor at UC San Diego School of Medicine. Garrett was diagnosed with epilepsy, a seizure-inducing brain disorder, and was prescribed medication. Learning that people with epilepsy can experience different types of seizures, which are often tricky to identify, the pieces began to come together — in hindsight, Garrett feels he had probably had the condition for a large portion of his life. “I had ‘stare seizures’ when I was younger,” he says, “[but] I thought everyone had [them].” This type of seizure, called a complex partial seizure, can cause the individual experiencing them to stare blankly for a minute or two, and can often mimic the appearance of daydreaming.
“We didn’t know he was having seizures,” Kathy adds, explaining there was no outward evidence and it was difficult for a little boy to quantify such an unusual, fleeting feeling. “What do you say, ‘I feel weird’?” Sometimes, complex partial seizures can also involve involuntary, repetitive movements of the mouth or hands, explaining what Garrett’s friends witnessed at school and his parents observed later that night.
A Turn for the Worse
Garrett felt an improvement with his medication, but his epilepsy took a frightening turn in October 2017. Some of his complex partial seizures began progressing to generalized tonic-clonic activity, characterized by several minutes of loss of consciousness and jerking and stiffening of the entire body. Within a month, Garrett had a seizure so intense, he broke four vertebrae — and not because of the reason one might think. “It wasn’t because I fell, it was because my muscles contracted to the point where they fractured my vertebrae,” he clarifies.
Garrett was referred to Olivia Kim-McManus, M.D., a Rady Children’s neurologist and an assistant clinical professor of neurosciences at UC San Diego School of Medicine. Dr. Kim-McManus specializes in medically refractory epilepsy, meaning epilepsy that does not respond to medication, as well as clinical neurophysiology and epilepsy surgery. “That’s when we started going down the path of doing VEEG/SEEG,” Kathy says.
These neurodiagnostic tests — video electroencephalogram and invasive stereoelectroencephalography, respectively — are often employed when first-line therapies for epilepsy are not fully controlling symptoms and patients are being evaluated for epilepsy surgery. Although Garrett had a traditional EEG to diagnose his condition, SEEG can provide care teams with deeper, more targeted insights into seizure onset zones.
Under his doctor’s supervision, Garrett ceased taking medication during his study to get the most accurate data possible. David Gonda, M.D., a Rady Children’s pediatric neurosurgeon, placed intracranial electrodes in the operating room, and Dr. Kim-McManus read results. Findings showed that he was having a large number of seizures within a 24-hour period, many that were not outwardly apparent, and that they were stemming predominantly from the right of his brain. It was apparent he needed additional intervention, a fact compounded when he had a seizure in the shower. “This was life-threatening,” says Kathy. It was time to talk surgery.
Successful Surgery
In collaboration with Shifteh Sattar, M.D., medical director of epilepsy surgery at Rady Children’s and associate clinical professor of neurosciences and pediatrics at UC San Diego School of Medicine, and Dr. Gonda, Garrett and his family weighed the options. Given that nearly all of his seizures arose from the right temporal region, Garrett’s options included a right temporal lobectomy, a procedure that removes the amygdala, the hippocampus and a portion of the anterior temporal lobe; as well as laser ablation, which precisely eliminates affected areas of brain using laser technology and magnetic resonance imaging. Although less clinically tested and proven than temporal lobectomy, Garrett opted for laser ablation, which is minimally invasive and does not present the same risk of language and memory complications. In June 2018, his surgical team, who Kathy calls “amazing,” completed ablation on his right medial temporal lobe. This procedure can only be carried out on one side of the brain, but can benefit both sides.
“I was in a lot of pain for a while,” Garrett chronicles, “[but] I think it was worth it. I’ve only had three seizures since the surgery — that’s a major improvement. I would’ve had 100 by now.” Garrett’s physicians are continuing to evaluate him and work toward getting that number down to zero. He will undergo additional neuroimaging procedures to determine which side of the brain is still contributing to seizures. If the right, laser ablation can be repeated or traditional temporal lobectomy can be performed. If the left, he will likely get a responsive neurostimulation (RNS® Therapy) device. Implanted in the skull, the RNS® device is similar to a pacemaker for the heart, and uses small wires to track brain waves for unusual activity. If it detects a seizure, it emits pulses that can help stop it from spreading, or from occurring at all. The pulses are painless, and the technology can be placed, adjusted, and even reversed or removed based on a recipient’s unique needs.
Garrett is looking forward to the day he can do a few simple things many teens never think twice about. “I’m getting to the age where my friends are all driving and they have jobs. I want to be independent and make my own money.” In addition to allowing him to be “a normal high school student,” his desire to work is rooted in gratitude for his parents’ support. “My parents offered to give me brain surgery. I know that’s a really intense thing, and I would [have] struggled to pay for it later [as an adult]. That’s amazing.”
He also plans on attending college once he finishes high school — with his epilepsy so significantly affecting his day-to-day routine for so long, he left traditional school, and is hard at work making up for lost time. But whatever is next, in treatment or in reaching milestones, one thing will remain a constant in Garrett’s life — his guitar. “I love to play guitar,” he says, a smile reaching even his voice. Although he lists “more relaxing music,” such as softer alternative and reggae, as his favorites to listen to and play, he keeps an open ear. “I love music in general — just nothing like ‘screamo.’”
Rock on, Garrett.
Published September 2018