For Chiari Surgery, Jack’s Family Traveled to Find Their “Home Team”

Jack Cacace Story

Jack

Jack Cacace’s journey to pediatric neurosurgeon Dr. Richard Anderson started, of all things, with a shoulder injury. When Jack got checked into the boards (thrown into the side of the rink) during an ice hockey game, he received a visit to urgent care, a diagnosis of a mild shoulder separation and a recommendation to take an over-the-counter pain reliever as needed.

But, says his mom, Josephine, over the next week or so Jack was just kind of “off.” The 12-year-old was tired a lot—he would go to sleep in the afternoon when he got home from school—and he was having headaches, headaches that seemed to be getting worse. Jack’s mom began to wonder if there was something going on besides a shoulder injury.

There was.

Jack’s pediatrician was concerned that Jack might have a concussion—and that if he did, the particular pain reliever he had been taking for his shoulder injury might have increased his risk of bleeding in the brain. So out of an abundance of caution, she ordered a CT scan to check for bleeds.

That scan revealed no bleeds, but it did show something totally unexpected: Jack had been born with a Chiari malformation, a condition in which the shape of the back of the skull compresses part of the brain. His was Chiari I, the mildest type. (To find out more about the types of Chiari malformation, see the information page on the condition here.) Chiari I often causes no problems in a young child but can begin to cause symptoms as the child grows into adolescence and young adulthood. Jack’s Chiari had also caused syringomyelia, a pocket of fluid trapped inside the spinal cord. Both conditions, Chiari and syringomyelia, can compress and damage delicate brain or spinal cord tissue if they worsen over time.

On one hand, the ice hockey injury turned out to be a piece of luck. The Chiari and syringomyelia had been discovered before they caused any damage at all to Jack’s brain or spinal cord. On the other hand, it was hard for Jack and his family to feel lucky. They were suddenly faced with learning about two conditions they had never heard of before—conditions that required Jack to see a neurosurgeon.

So Jack’s parents began researching online. They met with three different neurosurgeons in their home state, Pennsylvania, as well as New York. “We wanted to go to a surgeon who was very seasoned and very comfortable with the procedure,” says Josephine.

It was clear that Dr. Anderson fit that bill. “[He] had done research on Chiari, and it seemed like he had worked with a lot of patients over the years,” recalls Josephine. His office in Manhattan was about a 90-minute trip from the Cacaces’ home. And his hospital, Columbia University Irving Medical Center/NewYork-Presbyterian Hospital, was an enormous institution, especially when compared with their hometown hospital. But, says Josephine, “we knew that if we could get in to see Dr. Anderson, then we definitely wanted to meet him.”

So they set up an appointment and made the trip from their home in Pennsylvania into Manhattan. “The experience was amazing,” says Josephine. “For such a large hospital system, it was also very intimate. Even though NewYork-Presbyterian and Columbia have a lot of new and advanced ways of caring for people, it just seemed… homey, almost. We were shocked to see that Dr. Anderson himself came out and called Jack in for the consultation. We’d never seen that anywhere! That made us feel very at home.”

And the feeling didn’t stop there. Dr. Anderson himself “is very warm and welcoming,” says Josephine. “Sometimes when you’re meeting someone like a surgeon, you would expect not to have it feel so comfortable. But he was definitely easy to speak to.”

Dr. Anderson spent some time covering the type of surgery he would recommend for Jack. Dr. Anderson is known for his research into making Chiari surgery less invasive, whenever possible, by not opening the dura (the protective membrane around the brain and spinal cord). “He was confident that there was a very good chance Jack’s Chiari would be treated well by the less invasive surgery,” says Josephine. Once the Chiari is treated, the syringomyelia gradually resolves on its own.

Although Josephine and her husband still had two more doctors to meet, by the end of that appointment, they had made their decision. “We knew when we left there. My husband and I just looked at each other and said, ‘We definitely want to come here for the surgery.’ There was no question.”

The surgery was scheduled for less than six weeks later. The night before surgery, Jack and his family stayed in a hotel near the hospital. The next morning, a Monday, they arrived at the hospital bright and early for a 7 a.m. check-in. Jack’s mom recalls, “We all had the game-day jitters. We knew we had to do this, but at the same time, it’s just nerve-racking.”

But, she says, “the pre-op nurses were very warm and welcoming to Jack. They definitely tried to explain everything that was going to happen so that he was prepared. They did everything they could to make him feel comfortable.”

Jack also appreciated Dr. Anderson’s experience and manner. “He’s very nice, and he definitely knows what he’s doing,” says Jack. “I think he knows how to deal with kids and keep them from worrying [leading up to] a big surgery like that. He kind of relates to you and can kind of just cheer you up before you go in.”

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Around 8 a.m., Jack’s parents walked him down to surgery. And right around noon, they were reunited with their son in recovery. Everything had gone perfectly.

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By that evening, Jack was able to have soft foods. (Naturally, he opted for a milkshake.) He spent Tuesday recovering in the hospital, and Wednesday morning he paid a visit to the on-site teacher who is available for lessons. “Part of it is just showing the kids that even though you’ve had surgery, you can get back to normal things,” says Josephine. By Wednesday afternoon, he was discharged to go home.

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Jack recovered at home for a few weeks and returned to school after winter break. Six weeks after surgery, he had a follow-up appointment with Dr. Anderson and was cleared to get back on the ice. Today he is playing in full games with no restrictions.

Jack will have one more MRI to confirm that the syringomyelia has resolved, and then… that’s it. “As much as we love Dr. Anderson, we hope we don’t have to see him too often,” Josephine says with a smile.

Jack, now 13, has some words for kids who might be facing surgery. “It’s not nearly as bad as you’d think it would be,” he says. “Before surgery you think it’s such a big deal, but afterward you kind of feel like, ‘Oh, that was it?’ ” Josephine agrees. “It was really almost unbelievable how it seemed so simple for something that’s so serious,” she says.

And Josephine has a few words to pass on from her experience, too. “When you’re faced with surgery, especially a major surgery, sometimes you go to your comfort zone, and your local hospital might be your comfort zone,” she says. “But we went to a big city because we wanted the expertise. It turned out we were overwhelmingly surprised by how warm and considerate and inviting the hospital was.

This_is_Jack_in_June_2017_atop_the_Lemon_Squeeze_in_Mohonk,_NY.JPG“Everyone at NewYork-Presbyterian, from beginning to end—the nurses, the doctors, the support staff, even the security—everyone was just wonderful, they really were,” she says.

Now Columbia Neurosurgery is part of the family’s “home team.”


Find out more about Dr. Anderson on his bio page here.

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