Dad and daughter faced terrifying brain diagnoses. This surgeon saved both.

The Sanchez family’s medical odyssey started with a headache. Then it turned horrific. The father faced potential paralysis. Their daughter, they learned, could die.

The same Novant Health surgeon would save them both. This is their story.

A feeling of pressure

Isaias Sanchez and his wife, Toney, met at Grand Forks Air Force Base where they were stationed in North Dakota. Toney was an analyst while Isaias worked in finance for the U.S. Air Force.

Isaias received a physical as he was leaving the Air Force in 2007 and decided to mention some strange symptoms. “I’ve been having really intense headaches,” he told the doctor. “I’ve had them my whole life.” He couldn’t lift anything over his head or he might start to pass out. He also couldn’t laugh too much or a feeling of pressure would build inside his head.

Isaias was diagnosed with a Chiari malformation. People born with this brain condition have a “smaller volume of the lower skull that contains the cerebellum,” explained Dr. Ziad Hage, a neurosurgeon with Novant Health Brain & Spine Surgery - Cotswold. As a result, Hage said, “there’s not enough space for that area of the brain.” The cerebellum is partly responsible for controlling balance and coordination.

Some people with a Chiari malformation show no symptoms and never need treatment. Others, like Isaias, develop serious issues years after diagnosis.

Surgery to prevent complete paralysis

After their time in the Air Force, Isaias and Toney moved to North Carolina, where Toney had grown up. Their family flourished in Statesville with daughter Selah, now 14, and sons Gideon, 10; Solomon, 4; and Ephraim, 1.

Isaias lived relatively normally with his condition for years, using pain medications and avoiding triggers for headaches. A few times, he picked up one of his children and got an immediate, intense headache. His eyes would roll back and Toney had to shake him and call out, “Come back, come back.” He never fainted, though.

In 2020, the headaches grew more frequent. Staff at a veterans medical center did an MRI, found fluid building in Isaias’s spine, and referred him to Hage, who is head of cranial neurosurgery for Novant Health in the greater Charlotte region.

Following further tests, Hage was blunt: Structures in Isaias’s brain were compressed because of the Chiari malformation. Fluid which typically circulates through the spine and brain had backed up. Isaias had a fluid cyst in his neck.

Without surgery to reestablish normal flow of fluid, Isaias would be paralyzed within years as fluid accumulated. Though he hadn’t realized it, the fluid build-up had already slowed his reflexes.

The couple was shocked. Isaias knew how to avoid headaches. “But I don't want you pushing me around in a wheelchair in 20 or 30 years if I can help it,” he told his wife.

The surgery at Novant Health Presbyterian Medical Center involved removing a small portion of Isaias’s skull to increase the space for the brain and relieve the fluid build-up. When it was successful, the couple thought that frightening medical issues were past them.

There was more to come.

“I can’t get my food to my mouth”

In January 2021, Selah, then 10, slept over at friend’s house. The next day, her vision was a little blurry. “I can’t get my food to my mouth,” she complained to her parents. Toney and Isaias weren’t sure what to make of her comment.

Selah tripped later that day. She took a nap, which was out of character. “Something’s just not right,” Toney realized. The next morning, their pediatrician saw Selah and observed that her left eye was wandering. The pediatrician arranged an assessment that afternoon with an ophthalmologist. After the two physicians conferred, the pediatrician ordered an MRI.

The family was enjoying dinner and shopping at a mall when the doctor’s office called. The family needed to meet with a neurosurgeon right away. Selah had an arteriovenous malformation, or AVM, in the right occipital lobe of the brain. Toney heard the words “extremely serious” and started crying.

The ophthalmologist had called neurosurgeons around Charlotte to see who had an immediate appointment available. Hage’s office was the first to respond. Early the next morning, the family learned about AVMs from Dr. Erin Kiehna, Hage’s colleague and a pediatric neurosurgeon with Novant Health Pediatric Neurosurgery – Cotswold.

“Normally, the heart will pump blood through arteries. The organs will return the used blood to replenish it with oxygen and nutrients through veins,” Hage said. In people with an AVM, the arteries and veins are directly connected to each other. “That should never happen,” Hage emphasized. It’s dangerous because arteries are designed to handle pressure while veins are not. When subjected to high pressure, veins can bleed or form an aneurysm, a weakened area of the artery.

Selah’s AVM was located in the vision center of her brain. An AVM can steal blood from the brain around it, which in Selah’s case was creating her symptoms. There were not one but two aneurysms forming in her brain. These weakened areas can balloon out and burst.

“You don’t find them in children,” Isaias noted. But on the rare occasions when an aneurysm is present, it’s discovered when “you find the children on the floor having a seizure, or they pass away just out of nowhere.”

Saving her life and her sight

All the treatment options sounded scary for a 10-year-old. Surgery could remove the AVM, but Selah might go blind. The second choice, embolization, involved inserting a special type of glue to shut down errant blood vessels. Or they could use radiation. Embolization and radiation are sometimes deployed together. Isaias and Toney chose that course.

Hage performed Selah’s embolization. He compared the process to fixing a leak in your house. “What is the plumber going to do first? They’ll shut down the main pipe. Then they’ll fix the problem. That’s what we’re trying to do - shut down the main lead into the AVM,” he said. In Selah’s case, there were two main arteries feeding the AVM, so two embolizations were required.

Hage reduced the AVM by 75%, a highly successful outcome. Two months later, Selah had five rounds of precise radiation in the brain, known as stereotactic radiosurgery, to shrink the AVM further. She lost the left side of her peripheral vision. But three years after treatment, Hage considered her cured.

During this ordeal, Selah discovered a passion for drawing. Make-A-Wish sent the entire family to Universal Studios Hollywood in California. Selah was overjoyed when they got to have lunch with directors of the latest “Spider-Man” movie at Sony Animation Studios. She loved taking an animation drawing class and recording a voiceover there.

She’s involved in Civil Air Patrol, an auxiliary branch of the United States Air Force that teaches youth leadership, aerospace, fitness and character building. Her peripheral vision didn't stop her from earning a pro marksman designation during training this summer, as well as training to be a medic.

The family has developed a close relationship with Hage. “It’s cool when you’ve got a doctor that doesn’t just care about the condition, but actually cares about the person,” Isaias said. Toney jokes that she doesn’t want Hage to meet their other children, though.

Astoundingly, Isaias’s Chiari malformation did not make Selah more prone to an AVM. The diseases are unrelated. Gideon has been diagnosed with a Chiari malformation but doesn’t currently need treatment. The couple will monitor their younger children closely for any brain-related concerns.

Isaias is grateful for what medical care has given him and his family. He urges men who want to be “tough and macho” to get any symptoms checked, if not for themselves, then for their children and grandchildren. Because he spoke up about his own symptoms, he can now pick up his children and tuck them into bed without worrying about passing out.