Whenever parents Danielle and Douglas Myers need help for their son, Aiden, Cincinnati Children’s is there for them.
Aiden began having seizures when he was only a few months old. He became a patient in our Tuberous Sclerosis (TS) Clinic when he was 3, where he receives treatment for tuberous sclerosis complex (TSC) and intractable epilepsy—meaning that medication cannot bring Aiden’s seizures under control.
As a result, Aiden has required multiple surgeries over the years to remove tumors on his brain in hopes of stopping his seizures or decreasing their frequency. These included laser ablation surgery in 2016 and open cranial surgery in 2017, both of which took place at another hospital. A less-invasive surgical approach, laser ablation destroys the brain tissue causing the seizures rather than removing it.
In 2020 during the COVID-19 pandemic, Aiden’s seizures returned and the family sought further testing, including an evaluation to determine if another surgery was an option.
Once again, Cincinnati Children's was there for them and Aiden was seen by Hansel M. Greiner, MD, co-director of our Epilepsy Surgery Program, in July 2020.
“A big part of the stress for my husband and I was leaving our other three kids at home to go [to a hospital farther away],” said Danielle. She noted that it was much easier to drive two hours to Cincinnati from their home in Versailles, OH.
“In Cincinnati, we already knew the team at the TS Clinic, and I know we can always count on them. They explained everything to make sure [our] questions were answered.”
Aiden went through phase one testing and evaluation in August. The Epilepsy Surgery Team, a multi-specialty, comprehensive medical team that employs state-of-the-art medical and surgical technology to treat patients with epilepsy, reviewed Aiden’s data and recommended a stereo electroencephalogram (EEG) to get an accurate recording of the electrical activity of his brain. In January 2021, Aiden underwent a stereo EEG.
“We map the networks of the brain that are causing seizures and then map the networks of the brain that are functionally important,” explained Dr. Greiner. “Then we work with our colleagues in the Epilepsy Center, including neuroradiology and, obviously, neurosurgery, to develop a plan of attack.”
In an effort to remove the specific area of the brain that was causing Aiden’s seizures, the surgical team, led by neurosurgeon Francesco T. Mangano, DO, performed resection surgery in March 2021.
“Our goal is to be as minimally invasive as possible and remove as little brain tissue as might be necessary,” explained Dr. Mangano. “[Aiden’s] plan involved a fairly small tuber resection in the left frontal lobe, which was promising. Unfortunately, the location was very close to his motor system—the part of his brain that controls his right-sided movements.
“This was challenging, but our team provided Dr. Mangano with the functional maps generated from [Aiden’s] evaluation, and he did a wonderful job removing the target tuber without affecting the nearby motor system,” said Dr. Greiner.
“The entire [surgical] team was fantastic,” said Danielle. “The surgery process was shorter, which is great because the biggest thing for me is that he wasn’t under anesthesia as long.”
While there is no way to tell how long Aiden, 13, will be seizure-free, he will continue to receive yearly scalp EEGs.
“[The EEGs] will give us some sense as to how his brain is functioning and provide information about waveforms that could potentially lead to seizures in the future—at this time, we don’t see any,” said Dr. Greiner.
Tough times are a reality, though, and the family knows firsthand that treating epilepsy and TS can be like “trying to hit a moving target.” This is especially true for Aiden, who is severely impacted by the disease, autistic and has a behavioral disorder that prompts occasional outbursts, which can be hard to manage.
“I love him just the way he was made. I know that there is always hope that Aiden will someday be seizure-free, but I’m also a realist,” said Danielle.
“He could have a relapse, and if that happens, then we deal with it. I mean, it’s just like everything else in our daily life. It is not easy. It’s a challenge every single day, but we just take every day as it is. And we know we have the support system of the Cincinnati Children’s.”
Over the years, Danielle has made many strong connections with our nurses and other staff members, and she is thankful for their ongoing support and care. Besides the hospital, Aiden also has a support system inside his classroom, where he receives in-school therapies as a student with multiple disabilities.
“We try to streamline things at home and at school to make it easier for him,” said Danielle.
Danielle and Douglas want other parents of epilepsy patients, whether they are local or traveling to Cincinnati Children’s from out of town, to know that they are not alone.
“If they’re going to take my advice, having neurosurgery at Cincinnati Children’s is an easy decision,” said Danielle. “Talk to [the team], and you’ll know they have your best interest at heart. They’re going to take really good care of your child. They really are there to change the outcome of these kids.”
(Published June 2022)