Chiari Malformation Surgery Ends 15 Years of Pain for Patient at OU Health

Will Kennedy was 15 when the pain started. He was playing tennis and ready to serve. He tossed the ball into the air, swung and his head felt like it might split open.

“It literally felt like my head was expanding,” Will said. The pain hit hard and fast. For about five seconds, he couldn’t see the ball coming back across the net.

He was a talented player — good enough for the varsity team — but he turned down a spot in the state tournament because the headaches grew so severe. He was scared, and no one could tell him what was wrong.

That was 2012. A real answer wouldn’t come for nearly 15 years, when Will turned to OU Health, the University of Oklahoma’s academic health system.

A Pain No One Could Name

For years, the search for answers led nowhere. Eye doctors checked his vision and found nothing. Will changed his diet, drank more water, and took pain pills before tennis matches. Some people even thought he was making it up to avoid losing.

“I’m not making this up,” Will remembered thinking. “I know it sounds unbelievable.”

Then the pain changed. One day on a golf course, Will swung his club and dropped to the grass. A shock ripped from the back of his neck, past his ear, all the way to his eye.

“It felt like I stuck a fork in a toaster,” he said.

After that, almost anything could set it off. Bending over became agonizing. He learned to hold in his sneezes to avoid feeling like his face was being shocked. His left arm had gone numb.

A scan in 2019 finally showed something. Part of Will’s brain was pressing down through the base of his skull. But the scan showed one more thing that no one explained: a fluid-filled cyst was growing inside his spinal cord (a condition that can compress nerves and cause lasting damage).

“I did not know I had a cyst in my spinal cord,” Will said.

Despite the cyst and not having surgery, he kept moving forward. He got injections to dull the pain. Finished college and became a lawyer. Met his love, Payton Bell — someone who would later become one of his fiercest advocates. He believed the worst was behind him.

For a few years, he almost believed it.

The Crisis That Finally Forced Answers

But the worst was still ahead. In March 2025, while Will played golf, the shock-like facial pain came roaring back. Then one Monday, he woke up and couldn’t see straight. The room spun and the dizziness would not stop for 100 days.

He hid it from Payton at first. He kept thinking he could power through it without worrying his girlfriend or family.

“I’m super medically anxious,” Payton said. “He knew that if he told me, I’d say, ‘Let’s take you to the ER right now.’”

An ear specialist finally found a clue. A balance test showed lasting weakness in a nerve in Will’s left ear. Then she pulled up his scan from 2019 and froze.

“You need to go to a neurosurgeon yesterday,” she told him.

The Surgeon Who Had Seen It Before

A handful of doctors pointed Will, now 30, toward OU Health. An OU Health neurosurgeon studied the scan. He understood the complexity immediately and referred Will to a colleague: OU Health neurosurgeon Dr. Andrew Jea, M.D., professor in the Department of Neurosurgery at the University of Oklahoma College of Medicine. Dr. Jea specializes in Will’s rare problem and gave that problem a name: Chiari malformation.

Chiari malformation occurs when part of the brain sits too low and presses through the base of the skull. That blockage traps the fluid that should flow freely around the brain and spinal cord.

“The fluid is forced inside the spinal cord, creating a cyst,” Dr. Jea said. “That’s what we call a syrinx.”

A spinal cord under that kind of pressure stops working the way it should. That one problem explained all the headaches, the shocks, the dizziness, and even the numb left arm Will had lived with since at least 2019.

Dr. Jea said patients with rare conditions like Will’s often find their way to OU Health.

“We’re an academic referral center, so we get the most difficult cases,” Dr. Jea said. “We get used to treating these complex conditions.”

OU Health has built a program specifically for adults with Chiari malformations, drawing patients from across Oklahoma and neighboring states. Patient care, research, and teaching all happen under one roof. That integration is what allows the team to take on problems most hospitals rarely see.

Brain Surgery and a Calm Voice

When Will and Payton met Dr. Jea, the fear in the room lifted.

“If you know him, he has a disarming nature,” Payton said. “His voice is soft. He’s super kind.”

Will, a lawyer, had typed a long, detailed history of every symptom. Dr. Jea sat down and read every word. He answered every hard question and even offered Will his personal cell number.

Payton asked the hardest question of all: Should they fly to a big-name hospital instead? Dr. Jea told them that some hospitals run the same surgery the same way for every patient. At OU Health, the plan is built around the person. The couple walked to the parking lot and made up their minds.

“Dr. Jea is our guy,” Will said.

The repair Will needed is called a Chiari decompression. Dr. Jea would remove a small piece of bone from the base of the skull and upper spine to relieve pressure on the crowded brain tissue, then stitch in a patch so the trapped fluid could flow again. The goal was for the cyst to drain on its own.

The brain surgery carried significant risk, and Dr. Jea didn’t hide that.

“There are big blood vessels in the neck, very close to where we’re operating,” he explained. He would also work close to the brainstem, which controls breathing and heartbeat, and close to the spinal cord itself. One wrong move could cause a stroke or even paralysis.

Will went into surgery at 6 a.m. on Aug. 20, 2025. Once inside, Dr. Jea found two blood vessels tangled in the brain tissue, right where a single slip could cause a stroke. He knew how to move them safely.

“Thank God we went with Dr. Jea,” Will said, “and not just some random neurosurgeon.”

While the family waited near the hospital coffee shop, text messages from the operating room staff kept them steady. Every 30 to 45 minutes, a new update arrived. Five minutes after the final message, Dr. Jea personally called Payton, then came downstairs in his scrubs to explain how the surgery had gone.

He checked on Will every day during his hospital stay. When a bandage slipped loose early one Saturday, Payton texted him in a panic before 8 a.m. He wrote back within 10 minutes, calm and clear, and put her mind at ease.

The Moment They Had Prayed For

Recovery was slow. Brain decompression surgery is major. Even a successful procedure can mean weeks of relearning basic functions. Will spent two months at home. The first six weeks were hard.

Then, late that fall, came the moment they had prayed for. After Will’s follow-up scan three months after surgery, Dr. Jea pulled up the images and texted Payton a side-by-side comparison. The note read, “near complete resolution of the syrinx.”

Payton showed Will the phone. The two of them sat in their bedroom and cried.

“Dr. Jea gave Will his life back,” Payton said.

Today, Will is back to the things he loves, like golf, tennis, long walks with their dog, and trips with Payton. The dizziness and facial shocks are gone, as are the headaches. He has regained most of the feeling in his left arm.

“This feels like closing the chapter on 15 years of pain,” Will said.

Dr. Jea said outcomes like this follow when the right patient is matched with the right plan and steady hands.

“If we pick our patients properly and use good surgical skill, they have excellent outcomes,” Dr. Jea said. “Like Mr. Kennedy.” 

For Will and his family, the healing didn’t stop in the operating room. They’ve wished Dr. Jea a happy birthday, sat with him at a Thunder game, and even became friends on Facebook.

That kind of bond is rare between a patient and a surgeon. For Will, it means something simple and true. At OU Health, Will was never just another case. He was a person someone finally took the time to hear — and help.

For more information about diagnosis, treatment, and rehabilitation of neurologic conditions affecting the brain, nerves, and spine, contact OU Health or call (405) 271-4700.