After neurosurgery for an arteriovenous malformation at UPMC Children’s Hospital of Pittsburgh, Mick Caspar can now look forward to a headache-free future.

Joel “Mick” Caspar of Erie, Pa., will never forget his first headache.

“I was at the movies with my parents watching the final credits for Big Hero 6,” he recalls. “I suddenly had a full-on headache. I wasn’t quite 8 years old. Nothing like that had ever happened to me.”

It was just the first of hundreds of painful headaches to follow. Mick, now 15, often endured two or more a week.

“I became very light sensitive so I wore sunglasses whenever I was out of the house,” he explains. “Some of my friends never saw me without them for years.”

Fighting through the pain

Remarkably, Mick would fight through the pain.

“I got to the point where I would get a visual aura and one part of my vision would begin losing sight. It was like a little blind spot that would start to spread,” he explains. “When that happened, I’d mentally prepare myself for what was to come.”

Many of the headaches occurred at school. Mick would let his teacher know what was happening and then lie down for an hour or so until it passed.

“It would take about 15 minutes for the aura to build up, then up to an hour of actual pain. Things would start to die down over the course of the next 30 minutes,” explains Mick.

His parents, Heather and Jim Caspar, devoted themselves to learning more about what they could do to help.

“Our pediatrician followed his condition very carefully. She said it was unusual, but not impossible, for headaches like this to happen to someone so young,” says Heather. And it was comforting to know that as a teacher at Mick’s school, Jim could be at his side within minutes if needed. “But Mick really soldiered through these,” he says. “There were only a few times he asked to go home.”

Mick also found that playing video games could be a good distraction when he felt a headache approaching.

“If I could start playing video games when one was kicking in, the headache often wouldn’t hurt nearly as much,” he says. Distraction is a well-recognized pain management tactic.

Frightening vision loss

But in September 2020, Mick temporarily lost all sight while having a headache. The experience was a game changer.

“It lasted more than an hour and hurt significantly more than my usual headaches. It was pretty terrifying,” recalls Mick.

His pediatrician referred Mick to an adult neurologist who immediately ordered an MRI. The test revealed a 5-centimeter large arteriovenous malformation (AVM) in the back of his head on the left side. Both doctors agreed that Mick needed to see to Stephanie Greene, MD, a pediatric neurosurgeon with a special interest in AVMs at UPMC Children’s Hospital of Pittsburgh, where she serves as director of both vascular and perinatal neurosurgery.

“Mick’s always been a firm believer that knowledge is power so he probably handled the news about having an AVM better than Heather and I did,” says Jim. “He loves science and started researching it on his own. I think the more he learned, the more therapeutic it was for him.”

AVMs are abnormal tangles of blood vessels that can occur anywhere in the body, including the brain and spine. Mick’s AVM developed in his brain’s occipital lobe, which is responsible for visual processing. Pediatric AVMs like his are relatively rare and differ from those in adults. They develop in the womb and can go undetected for years — even well into adulthood — until symptoms appear or a rupture occurs.

Mick was diagnosed with a complex grade III Spetzler-Martin occipital AVM. Because of its size and location, Dr. Greene advised Mick and his parents that he would likely experience some vision loss after surgery.

Surgery and a fast recovery

The gold standard of care for AVMs is microsurgery or radiation treatment, depending upon the size and location. Embolization — a minimally invasive procedure to reduce the blood supply — is often utilized to reduce the amount of bleeding during surgery, followed by microsurgery to remove the AVM. A specialist in neuroradiology at UPMC Children's performed four embolizations on MIck over a three-month period, followed by surgery with Dr. Greene on June 15.

“My surgery was a Wednesday, and I went home Saturday,” says Mick. “Dr. Greene came by after the operation and told me I’d probably be released Sunday — unless I made a superstar recovery. I knew I’d go home early.

“About an hour before leaving the hospital, I called one of my friends and asked if he wanted to play some video games when I got home. And he's like, ‘didn’t you just have brain surgery?’”

“Early on, Jim and I said to each other that Mick was handling things so well that we needed to make sure that we didn't also put on him the requirement to manage our emotions, too,” says Heather. “More than a year later, we still find ourselves processing everything that happened. The brilliant thing is that he hasn't had a single headache since the surgery — and there’s no sign of the AVM.”

“Dr. Greene told us to prepare for a lengthy recovery,” says Jim. “But we got home and Mick sat down and played some video games with his friends. Heather and I looked at each other and I said, ‘I guess we’ll take our cues from him again. He seems OK.’”

As Dr. Greene predicted, Mick did experience a significant cut in his right field of vision after surgery.

“About five months after the operation, I started to get flashing colors in the blind spot. After continuing for a period, the flashes eventually slowed down — and the blind spot decreased,” says Mick. “This summer we drove to Florida for vacation, and while riding in the car I had another color burst, and the blind spot shrank some more. My peripheral vision also has cleared up a lot. It's almost completely back.”

A grateful family

“I don’t think we’ll ever find the words to thank Dr. Greene for all she’s done for Mick and our family,” says Heather. “She’s a gifted, amazing neurosurgeon. Most of all, she connected with us on a personal level as the parent of a daughter around Mick’s age who recently had surgery. And she always spoke directly to Mick, answering his questions and never speaking down to him.”

“We always felt she understood what we all were going through,” adds Jim. “There really wasn’t a time that we had any reason to believe that this wouldn't be successful — and that was because of the way she worked with us and was so relatable and so approachable. She was fantastic.”

“When I first heard about my AVM, I thought, ‘Oh, God, I really hope I get someone good,’” says Mick. “While Dr. Greene explained the risks, we all knew she was going to do everything — literally everything — in her power to make sure my surgery went perfectly. And she did.”

Mick’s treatment and results may not be representative of all similar cases.