A Seizure, a Misdiagnosis, and a Brand New Truck: How One Five-Year-Old Found Her Way to Houston for Specialized Surgery for a Rare Brain Mass

By Alexandra Becker

Tony Dingler’s voice still shakes in disbelief when he begins to tell the story. His daughter, Victoria, had just turned five—a big milestone for a little girl. Full of energy and sass, she spent her days coloring, dancing, speeding up and down the driveway on her scooter, and begrudgingly going to her brother’s baseball games.

She also attended a daycare in her hometown of Bossier City, LA, where she loved learning sight words and spending time with her friends. But on a chilly day in February, as she was talking with one of her teachers, her expression suddenly went blank. Then, her arm started twitching ever so slightly. It was subtle, but her teachers knew to call 9-1-1.

Victoria was having a seizure.

At the local hospital, her parents authorized every test imaginable. But to their surprise—and relief—everything came back normal.

“It was like there was nothing wrong,” her father, Tony, recalled. “They said the next step was to schedule an MRI, but they couldn’t do it until the following week.”

Discouraged and nervous, the Dinglers went home and held their breath—and their daughter tighter. Tony, who manages a car dealership, reported to work the next day, hoping to distract himself from worry until the scheduled MRI. He focused on sales calls, invoicing and emails. Looking back, one particular phone call would seem like a kind of divine intervention.

“These new RAM 1500 TRX trucks just came out and you couldn’t get them anywhere, and we had one show up on our lot,” Tony recalled. “A man out of Houston called up saying he wanted to buy it, so we drew up the paperwork, which is when I saw that he worked at a place called THINK Neurology for Kids in The Woodlands. I almost fell out of my chair when I read that.”

The potential buyer was Dr. Shaun S. Varghese, a pediatric neurologist and the CEO of THINK Neurology for Kids.

“I called him right back and I was like, ‘Listen, I don’t know if it’s going to be a big deal or not, but I have to tell you what happened with my daughter,’” Tony said.

He recounted the story, explaining that she had an MRI scheduled for the following week.

“I remember we spoke for a while and he explained that he felt that God wanted us to meet,” said Varghese. “We spoke as if we had been friends for years, and I told him to call me as soon as the MRI report was available.”

Tony did just that. The local hospital that performed the MRI had diagnosed Victoria with an arteriovenous malformation, known as an AVM, which are tangles of blood vessels that can cause irregular connections between the arteries and veins.

“Dr. Varghese called me as soon as he got the results and he said, ‘I don’t know how you feel about the hospital there, but I would really rather get you over here in front of one of the best pediatric brain surgeons in the country,’” Tony recalled.

Varghese made some phone calls and the next morning at 11 a.m., Tony and his wife, Jennifer, were in Houston with their daughter sitting in the clinic of Dr. David Sandberg, professor and director in the Division of Pediatric Neurosurgery who holds the Dr. Marnie Rose Professorship in Pediatric Neurosurgery at UTHealth.

“It was a crazy chain of events after that,” Tony said. “Dr. Sandberg took one look at the MRI and knew immediately that it wasn’t an AVM. But he also said he couldn’t be sure exactly what it was based on the imaging alone—that it looked like something he maybe hadn’t seen before.”

Sandberg, who is part of UTHealth Neurosciences and is also the director of Pediatric Neurosurgery at Children’s Memorial Hermann Hospital, sat down with Tony and Jennifer and explained that the MRI showed a mass that could not be characterized without a pathologist having access to the tissue. His recommendation was surgery to remove the entire mass, both to make a definitive diagnosis and to hopefully prevent further seizures.

“He said we would want to remove it either way to control the seizures, and we agreed,” Tony said. “It was an easy decision.”

Jennifer added that a coincidence put her even more at ease with their decision.

“It was a small sign for me that Dr. Sandberg was the right person, rather than the neurosurgeon in our hometown, because his name is David,” Jennifer said. “My father’s name was David. He passed away when I was 10, but it was like he was telling me that David Sandberg was the person for the job—that he was watching over our little girl.”

The family went home to Louisiana and a few short weeks later, they were back in Houston, and Victoria was in the operating room. The surgery was scheduled to take approximately three to four hours, but at hour five, Sandberg sent a member of his surgical team into the waiting room to reassure Tony and Jennifer that everything was going well, but that the mass was much bigger than they could have predicted.

After more than 10 hours, Sandberg finally finished removing every bit of it.

“In the end, Victoria had a very interesting and rare lesion in the brain which turned out to be meningiomatosis, which is a benign, tumor-like entity typically found in individuals much older than she,” Sandberg said, explaining part of the mystery surrounding the mass. “We were able to completely remove the tumor from her brain, and I am happy to report she has been seizure-free since.”

Knowing what they know now, Tony said it was a miracle Victoria had only had that one seizure.

“The mass was about five times the size they originally thought it was, and as hard as a rock,” he said. “But she was up and walking the very next day after surgery. Now she’s one hundred percent, like nothing ever happened.”

Two weeks after surgery, Victoria was happily back at school—with her friends, her reading lessons, and the teacher who may have saved her from a serious, debilitating seizure down the road. The soon-to-be kindergartner is thriving thanks to a small group of helpers—and perhaps a little something more.

“What a crazy circumstance that Victoria’s father happened to encounter Dr. Varghese, an extraordinary pediatric neurologist who leads the THINK Neurology team in Houston, right when he needed help for his daughter,” Sandberg said. “Typical of Dr. Varghese, he went out of his way to help this child without ever billing for his services.”

As for Varghese, he was more than happy to do it. 

“Tony and I knew that we were meant to meet, at this time and moment, so that his daughter could see the best pediatric neurosurgeon and team,” said Varghese. “This is why we all do what we do. Our goal is to help everyone regardless of where they come from, what their financial status is, or who they are. This was compassionate, quality and efficient neurosurgical and neurological medical care because we all cared as one team for this one patient.”

Comments

  1. AMAZING! ❤️ I grew up with Jennifer and they are great people! Angels in the MIST-

Leave a Reply

Your email address will not be published.

Ali Vise