Thomas' Journey with Epilepsy

In the heart of Texas, 21-year-old Thomas Friesenhahn is living an exhilarating chapter of his life as a student at Texas A&M University. He is in the Squadron 17 Corps of Cadets, active in social organizations, working towards a degree in accounting, and just received his Aggie ring—a cherished tradition at the university.

But Thomas’ journey to the present day was not without challenges.

In January 2018, when Thomas was just 15 years old, he began experiencing debilitating migraines, which gradually worsened over time. Finally, in April 2019, after diagnostic testing and review by pediatric neurologist, Melissa Svoboda, MD, who is division chief in the department of neurology at CHRISTUS Children’s, he was given a diagnosis: Thomas had epilepsy, and his headaches were, in fact, seizures.

The active teen who played high school basketball and worked a part-time job was forced to give up much of his independence, including the opportunity to drive on his own. He tried numerous medications, but none of them seemed to help

Path to Finding Treatment

In fact, his seizures, which began as absence seizures and presented as brief, sudden lapses of consciousness, were gradually evolving to include grand mal seizures.

After five years between pediatric and adult epilepsy care, Thomas and his family met with Mark Lee, MD, PhD, section chief of pediatric neurosurgery and Epileptologist Gustavo Charria-Ortiz, MD, at CHRISTUS Children’s.

“Dr. Lee and Dr. Charria evaluated Thomas’ medical record and tests and felt they could provide a real solution,” recalled Thomas’ mother, Shelly. “Both doctors met with us individually and gave us their undivided attention, answered our questions and equipped us with the knowledge necessary to make an informed decision.”

When the topic of surgery was presented to Thomas, it was immediately clear that Dr. Lee was the best choice. “Based on his ability, credentials and bedside manner, we knew we wanted him to perform our son’s surgery.” Shelly said.

Dr. Lee also carefully explained in detail the type of surgery Thomas would undergo, as well as the expected prognosis. Although Thomas’ epilepsy was not very responsive to medication, the family understood there was an 85% success rate with surgery.

“We knew we had to try, and we were confident in Dr. Lee’s ability,” Shelly said.

Life-changing Surgery

And so, on May 11, 2023, at 20 years old, Thomas underwent a surgery that he hoped would change the course of his life.

“We performed a right-temporal lobectomy, which involved removing approximately three inches of brain tissue at the epicenter of the seizures,” Dr. Lee explained. “A temporal lobectomy is the most common type of surgery for patients with temporal lobe epilepsy, and it can be effective in leading to a significant reduction or full control of the seizures.”

Thomas’ mother, Shelly, his father, Tom, and grandmother, Mickie, were all in the waiting room—anxious for news throughout the procedure.

It was a scene Shelly had seen numerous times before, but she was always playing another role; Shelly herself works at CHRISTUS Children’s as the Clinical Director for Perioperative Services Day Surgery, PACU, and Sedation Services.

“It was truly special to know that the people I interact with every day were the ones making this life-changing difference for my son,” Shelly said. “It provided this incredible insight into what our patients go through and really emphasized the difference compassionate care can make.”

Shelly recalled how everyone had been so kind, and how the entire day had flowed seamlessly.

“The teams guided us every step of the way, and the OR nurse kept us in the loop, calling my phone every hour to provide updates,” Shelly said. “Those touchpoints kept our nerves at bay, and they meant the world to us.”

"Thomas 2.0"

Finally, after approximately four hours, the family was informed that the surgery was over and it had gone well.

“We were so nervous because you never know the outcome,” Shelly said. “When he woke up and said, ‘Hi, mom,’ it was just the most incredible feeling.”

Thomas’ recovery was swift. He remained in the hospital for three days and was discharged on Mother’s Day—the best gift Shelly could have asked for.

Even better, however, is that the surgery was a resounding success: Thomas has been seizure-free since.

“The fact that the surgical team was able to act when they did and ultimately grant him a seizure-free life is nothing short of amazing,” Shelly said.

Thomas’ family has noticed a remarkable improvement now that he no longer struggles with unexpected seizures, with his dad nicknaming him, “Thomas 2.0.”

"Helping patients gain control over their seizures and return to normal life is the essence of what we do,” Dr. Charria said. “Epilepsy can profoundly disrupt daily existence, but our work as epileptologists offers a path back to independence.

By carefully diagnosing, treating, and providing continuous support, we aim to transform lives and empower our patients to embrace a future free from the burden of seizures. It's an incredibly rewarding journey that reminds us of the importance of our mission each day."

A Seizure-Free Life

As for Thomas, he’s thrilled to gain a newfound sense of independence at Texas A&M, as he was finally cleared to drive for the first time since he turned 16.

“I’m so grateful for Dr. Charria and Dr. Lee for everything they’ve done for me,” Thomas said. “Over the many doctor’s appointments I had, they were always pleasant and never something I dreaded, and they did everything they said they would, and more.”

Thomas will continue to see both doctors periodically for routine visits, but he is expected to have a full recovery and live a life without limitations.

“We couldn’t have had a better experience,” Shelly said. “We’re overjoyed with Thomas’ progress and forever grateful to the team of professionals who cared for him—my own co-workers! We never expected to be on this journey, but now that we are living through it, I want to tell people to never give up hope. Take the little wins along the way, build your support network because setbacks do occur, and have faith.”

To learn more about pediatric neurology services at CHRISTUS Children’s, visit https://www.christushealth.org/locations/childrens-hospital/neurosciences-center