Help with Tonic-Clonic Seizures: Alejandra Gaehd
Epilepsy affects 50 to 60 million individuals worldwide, and while the majority lead normal, seizure-free lives, one-third live with recurrent, often disabling seizures. Among them was Mexico City resident Alejandra Gaehd, who was 19 and asleep when she had her first tonic-clonic seizure. 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,” she 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.”
Gaehd suffered a tonic-clonic seizure about every three months and partial seizures that presented every day as strange feelings in her left hand and arm. “Life became very stressful because I didn’t know when one of the partial seizures would become a big one in the classroom or when I was driving, or at a party with friends,” she says. “My life had to go on, so I finished college, went to work, and got married – all of the things people without epilepsy do.”
After beginning treatment with anti-convulsive medication, she remained stable for 11 years, with only partial seizures in her left arm. “It wasn’t much of an issue until we had kids,” says her husband, Andres Tortoriello.
The couple’s first child, Andres, now 5 years old, was delivered by C-section as a precaution. After the birth of their second child, Juan Pablo, two years later, Gaehd began having more frequent and stronger partial seizures. In February 2019, the couple was watching TV at home when she had a full tonic-clonic seizure, her first since the age of 25.
“Alejandra was hospitalized for five days, and the day she was discharged, we went back to the hospital because she felt like she was going to have another seizure,” Tortoriello recalls. “The neurologist she saw changed her medications, and from then on, it was very hard. She had major seizures in different situations. It was a significant difference from previous years, when our lives were pretty much under control. She couldn’t do anything with the kids alone. We had to hire a driver and a companion for her. She spent 40 nights going in and out of the hospital, and even in the hospital she kept having seizures.”
Tortoriello repeatedly left work to accompany his wife to the hospital. “At some point the doctors said there was nothing else they could do,” he says. “This would be our new reality, which was very hard to hear.”
Gaehd felt drowsy and distracted from her medication, and spoke slowly. “I was a 33-year-old mother, and from one day to the next, I was no longer Alejandra. I was anxious, stressed, and scared all the time. I only felt secure in the hospital and at home with Andres,” she says. “If he had to travel for business, my mother-in-law stayed over with me.”
Then Gaehd had the seizure that would lead them to Nitin Tandon, MD, in Houston. Tandon is a neurosurgeon at UTHealth Houston Neurosciences and professor, chair ad interim, and director of epilepsy surgery in the Vivian L. Smith Department of Neurosurgery at McGovern Medical School at UTHealth.
“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 Houston Neurosciences who completed fellowship training in epilepsy surgery under Tandon. Esquenazi, who is originally from Mexico City and is an associate professor of neurosurgery at McGovern Medical School, helped arrange an appointment with Tandon and neurologist Samden Lhatoo, MD, FRCP (Lon), Distinguished University Professor of Neurology at UTHealth 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. “I felt really calm because I knew I was in good hands,” Gaehd says.
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.
“He was confident that he could remove the areas of the brain that were causing the seizures,” Tortoriello says. “There are always risks, but we didn’t even question it because we trusted Dr. Tandon. It was extremely brave of Ale to go through the process.”
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 in 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.”
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