Samantha H., 36, of Gibsonia, Pa., was only 9 years old when her health issues began. Diagnosed with type 1 diabetes in elementary school, Sam became used to the extra steps needed to keep herself healthy, even at a young age.
Then, toward the end of elementary school, Sam started experiencing “spells.”
“I would sit there and stare off into the distance and shake a little bit,” she explains. “My body knew something was up — I could feel this sense of fear that something bad was going to happen — then I would go right back to where I was, like normal.”
Her primary care provider and endocrinologist did not see any signs of seizure activity, but Sam's occasional spells continued through middle school.
Enduring More Seizures in School
At 15, during her freshman year of high school, Sam was walking out of class with two friends. The next thing she remembers is waking up while being transported to the hospital.
She’d had a grand mal seizure.
Sam was referred to a neurologist at UPMC Children’s Hospital of Pittsburgh. There, she was diagnosed with epilepsy — specifically frontotemporal epilepsy, sometimes referred to as frontal lobe epilepsy. She was put on an antiseizure medication and went back to school.
Because of the scope of her seizure, Sam also lost access to the quintessential symbol of newly acquired teen freedom: her driver’s license.
“It still makes me emotional thinking back to how hard it was to adjust,” Sam says. “I had to rely on my friends and siblings to take me everywhere, which I am so grateful for.”
Thankfully, Sam’s epilepsy diagnosis didn’t affect her other regular high school activities as much. She was still able to run track, play basketball, finish her classes, and hang out with her friends.
“It was always in the back of my mind — the idea that I could have a seizure at any time,” Sam says. “I could live my life normally, but sometimes I would have small spells and think, ‘What if I had been driving?’”
Sam graduated from high school and was looking forward to a new experience as a college student at Indiana University of Pennsylvania (IUP). When she'd reached college age, Sam had been referred to UPMC adult neurologist Valerie Suski, DO.
During her first semester of college, Sam had a setback. She was hanging out with new friends in the dorm, and the next thing she knew, she was waking up on the way to an Indiana hospital.
She had suffered another big seizure.
This pattern continued over and over for the next few years. Sam would suffer a seizure, Dr. Suski would change her meds, and she'd be monitored for seizure activity. Still, she managed to graduate from IUP on time with her peers and start working.
A Recurrence in Symptoms
Eventually, Sam started having breakthrough seizures. She was on two medications already, one of them at the highest possible dose.
In 2020, following another electroencephalogram (EEG), Dr. Suski told Sam that she might have to undergo surgery to treat her seizures. Sam was then referred to James Castellano, MD, PhD, UPMC neurologist and epileptologist.
Sam underwent magnetic resonance imaging (MRI), which showed scar tissue on her brain. She was diagnosed with intractable epilepsy, a condition in which seizures continue despite trying at least two appropriate, maximally tolerated antiseizure medications.
That’s when Dr. Castellano referred Sam to neurosurgeon Jorge Alvaro González-Martínez, MD, PhD.
Dr. González-Martínez, a UPMC epilepsy surgery expert, explained to Sam that the scar tissue was the source of her seizures.
He proposed a two-part brain surgery. The first surgery would implant electrodes to monitor the seizure activity in her brain. If results showed a lot of activity, he would perform a second surgery to remove the scar tissue from her brain.
“I remember I just lost it; I called my mom crying,” Sam says. “I couldn’t believe I was facing brain surgery.”
Dr. González-Martínez was the perfect person to share this information with Sam.
“Something about him was comforting from the very beginning,” she says. “Every detail, every question, I just trusted him right away.”
Dr. Castellano worked together with Dr. González-Martínez to plan the surgeries.
In May 2021, Sam stayed in UPMC's Epilepsy Monitoring Unit (EMU) for two nights to have her seizure activity studied using stereoelectroencephalography (SEEG). SEEG includes the surgical implantation of electrodes in the brain to better localize the seizure focus.
During her time in the EMU, 62 seizures were detected in the amygdala and hippocampus areas of Sam’s brain. Her team recommended moving forward with the second surgery.
“When I was waiting for anesthesia before surgery, a nurse caught me crying and asked what was wrong,” she says. “I told her I was terrified about surgery, and she said, ‘Dr. González-Martínez is a world-renowned surgeon.’
"That really stuck with me. It was so reassuring. He is the best of the best.”
In early July 2021, Dr. González-Martínez removed the scar tissue from Sam’s brain at UPMC Presbyterian. She spent two nights in the hospital and was then discharged to recover at home.
A Seizure-Free Life
By the end of August, Sam was back at work, seizure-free.
To this day, Sam remains seizure-free. She no longer sees Dr. González-Martínez but has yearly follow-up appointments with Dr. Castellano. He plans to wean her off all remaining medications.
Sam credits her strong support system of friends and family and her care team for her health today.
“UPMC was so collaborative with my care; they worked with the endocrinology department for my diabetes and worked well as a team," she says.
Today, Sam enjoys the freedom of living alone, driving herself around, and being physically active. She enjoys paddleboarding, pickleball, and her community-oriented gym. An avid sports fan, she loves watching Pitt football and Duquesne basketball and traveling with her loved ones.
“I don’t think about it as much anymore; I just enjoy my life,” she says.
Still, Dr. González-Martínez’s words stay with her.
“When I had my last follow-up with him, he said, ‘I never want to see you again because I don’t want you to have a seizure. But I do want a holiday card from you every year,’” Sam recalls. “That says everything you need to know!”
Samantha’s treatment and results may not be representative of all similar cases.
