Finally finding answers for cavernous malformation

treatment for cavernous malformation

It was early morning and Tiffany and Joe Palowski were worried. Their son, Michael, was undergoing a magnetic resonance imaging (MRI) scan to determine the cause of his excruciating headache. The test — only expected to take about 45 minutes — now approached the two-hour mark. “They had to have found something,” Tiffany said as her panic rose. “I know they did.”

About 10 days earlier, Michael had gotten sick, vomiting so intensely that he began throwing up blood. The 6-year-old had spent a week in a local hospital with a suspected case of norovirus before being sent home. But then he’d developed a headache that wouldn’t clear up. Thinking he might have a migraine, the family returned to the same hospital in Connecticut. But now they wondered if more than a migraine was in play.

after surgery for cavernous malformation

More than a migraine

Tiffany’s fears were confirmed when doctors explained that the MRI had revealed a pea-sized hemorrhage from a mass in Michael’s brain. The good news, they said, was that these masses of small blood vessels — known as cavernous malformations — don’t usually bleed again right away. But two days later, the pattern of illness started all over again. The malformation had bled again in just 48 hours.

Although Michael’s physicians initially recommended surgery within a few days, they soon changed their minds. Now it was unclear what the treatment would be. “It was like living in a Peanuts cartoon where you can’t understand what the adults are saying,” says Tiffany. “We had so many questions: ‘Does he need surgery or not? Will he live a normal life?’ I didn’t know if I was overreacting.”

cavernous malformation surgery

Concern and confusion

Although his doctors assured her that Michael would be fine, Tiffany’s gut told her something was amiss. Now, she wasn’t just concerned about taking him on a planned trip to Disneyworld in a couple of months. She was terrified to leave the hospital with him at all. And for good reason — just a couple of days later, Michael was lying on the couch at home when he stared into space, lost in what appeared to be a seizure. Still, his doctors suggested just waiting things out. “I felt helpless,” says Tiffany. “I couldn’t help my son because I couldn’t get answers myself.”

Equally frustrated, the family’s pediatrician recommended that they get a second opinion from the Cerebrovascular Surgery and Interventions Center at Boston Children’s Hospital. They were understandably nervous when they arrived to meet with Dr. Edward Smith, but were relieved when he instantly put Michael at ease with some jokes. “He kidded around with Michael and is very down-to-earth, but it was clear that he’s also very professional and took everything really seriously,” says Tiffany. “We were comfortable because Michael was comfortable.”

life after cavernous malformation surgery

Trusting her gut

The Palowskis were further heartened when Dr. Smith confirmed that Michael would need surgery — and that he would recommend it if his own child was in the same situation. “We finally had answers. I knew I wasn’t crazy,” says Tiffany. “We are forever indebted to him.” Once Dr. Smith had reassured Michael that he would not have to cut his head off to perform the procedure — a natural concern for any little kid — it was time to take the next step.

In the months following his successful surgery, Michael is getting back his spark. About to enter first grade, he’s eager to get back to playing baseball and being a NASCAR super-fan. When asked what he did over his summer vacation, he proudly answers, “I had brain surgery.” And his little brother, Will, thinks his scar is “the coolest boo-boo.”

As his parents reflect on their journey, one message stands out to them. “It’s about intuition and the belief that if you keep looking for answers, you’ll find them,” explains Tiffany. For her family, Boston Children’s had the answers they needed. “I hope I never have to refer anyone else to a pediatric neurosurgeon,” she says. “But if I have to, I know an amazing one.”

Learn about the Cerebrovascular Surgery and Interventions Center.