Her mother came into her bedroom and witnessed the stiffened muscles and jerking movements characteristic of a convulsion. Gaehd remained unconscious for a minute or two and when the seizure passed, she awakened dizzy and unaware of what had happened.
“At the hospital, a doctor told us I had had a seizure,” Gaehd says. “Three months later, I had another one that my brother witnessed. The next one came three months after that when I was on a trip with my sister. After that, I was diagnosed with epilepsy.”
Epilepsy affects 50 to 60 million individuals worldwide, and while the majority lead normal, seizure-free lives, Gaehd is among the one in three who live with recurrent, often disabling seizures. The type of seizure she had is considered a tonic-clonic seizure, which includes both stiffening (tonic) and jerking (clonic).
After beginning treatment with anti-convulsive medication, she remained stable for 11 years, with only partial seizures in her left arm. But following the births of her two sons – Andres, 5, and Juan Pablo, 3 – Gaehd began having more frequent and stronger partial seizures, and in February 2019, she had her first full tonic-clonic seizure since the age of 25, leaving her hospitalized for five days. Once her neurologist changed her medications, Gaehd spent 40 nights going in and out of the hospital due to major seizures.
“At some point the doctors said there was nothing else they could do,” says Gaehd’s husband, Andres Tortoriello. “This would be our new reality, which was very hard to hear.”
Then Gaehd had the seizure that would lead them to neurosurgeon Nitin Tandon, MD, professor, chair ad interim, and director of the epilepsy surgery program in the Vivian L. Smith Department of Neurosurgery at McGovern Medical School at The University of Texas Health Science Center at Houston (UTHealth). Tandon sees patients at UTHealth Neurosciences.
“Ale was sitting on the couch feeding Juan Pablo and suddenly she stood up, pushed the baby out of the way, and had a full tonic-clonic seizure that was captured by our security cameras,” Tortoriello says. “We now had a video we could share with any doctor. I have good health insurance in the U.S. through my company, so we decided we would get a second opinion.”
Tortoriello’s brother works at The University of Texas MD Anderson Cancer Center and his wife is a friend of Yoshua Esquenazi, MD, a neurosurgeon at UTHealth Neurosciences who completed fellowship training in epilepsy surgery under Tandon. Esquenazi, who is originally from Mexico City and is an assistant professor of neurosurgery at McGovern Medical School, helped arrange an appointment with Tandon and neurologist Samden Lhatoo, MD, FRCP (Lon), professor and John P. and Kathrine G. McGovern Distinguished Chair at McGovern Medical School and director of the Texas Comprehensive Epilepsy Program, the leading program in the southwestern United States for the diagnosis and treatment of epilepsy in patients of all ages.
Gaehd and Tortoriello traveled to Houston in September 2019 to meet with the two physicians. After testing that included a high-resolution 3-Tesla MRI, functional MRI, and a PET scan, Gaehd was admitted to the adult Epilepsy Monitoring Unit at Memorial Hermann-Texas Medical Center for a video-EEG evaluation to record her seizures.
“Alejandra had brain polymicrogyria in the right perirolandic region, a malformation of brain development with excessive folding of the brain and an abnormally thick cortex,” Tandon says. “The video they sent of her seizure was very compelling, illustrating the psychosocial impact of the epilepsy. From the video-EEG and the imaging we were able to tell that she was a good candidate for surgery.”
The couple returned home to Mexico City and started planning for the procedure. “Dr. Tandon was amazing. After all we’d been through, it was unbelievable to us that something could actually be done to help,” Tortoriello says. “We said, OK, let’s do what we have to do.”
They traveled to Houston in January 2020 for the surgery.
Tandon, who has performed over 230 robotic stereoencephalography (SEEG) implantations, surgically implanted electrodes into her brain tissue to map the area causing the seizures and determine which parts were essential for movement. The minimally invasive procedure is optimal in patients with deep-seated lesions like Gaehd’s. Usually the procedure is done in two steps: SEEG followed by laser ablation a month or two later. “Because they came from Mexico City, we planned the surgery so that we could use the same entry points into the brain for malformation testing and then later for inserting laser probes to destroy the malformation with laser-guided interstitial thermal therapy,” Tandon says.
After the SEEG implantation, Gaehd stayed in the Epilepsy Monitoring Unit for a week, until Tandon captured enough data to perform the second surgery.
While she was hospitalized, her brother and sisters came from Mexico to provide support. After her discharge, the couple stayed in Houston for a week and a half. “My left arm looked like a dead fish. It was just hanging there, and Andres helped me sit, stand up, and dress,” says Gaehd, who used a walker for six days and donated it before leaving Houston. “He was always very encouraging. Like in sickness and in health, he was always there for me.”
People who see her today would never know that Gaehd had epilepsy and neurosurgery. She has use of her arm again and now rides a bike, jumps rope, drives, chases after the kids, and works out at the gym. She saw Tandon in April 2021 for a follow-up and is reducing her anti-convulsive medication under the watchful care of Lhatoo, whom she sees once a year.
“It’s been a year without seizures, and we’re completely back to a normal life,” Tortoriello says. “People say there’s a stigma attached to epilepsy but when someone asks, we share everything because we hope we can help others. We never questioned having surgery because we were in a very bad place. We did what we had to do for the family. The second reason was Dr. Tandon. Everyone we met told us we were in very good hands. We thought we were really lucky, and we thank God for these opportunities.”