Stories about: cavernous malformations

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.

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Brain surgery for a cavernous malformation gets Timmy back to being a kid

surgery for cavernous malformation

Eight-year-old Timmy LaCorcia was having a bad day. He didn’t feel well and had to leave school early. It was frustrating — he usually had perfect attendance — but not alarming. After all, it was March, a time when children often struggle with colds and other illnesses. “We just thought he had a stomach bug,” says his mother, Gina.

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Cavernous malformations: What parents need to know

They’re among the more common cerebrovascular problems in kids. But few parents have heard of cavernous malformations until their own child is diagnosed. These small masses are comprised of abnormal, thin-walled blood vessels. While they can occur anywhere in the body, they’re most likely to cause problems when they form in the brain and spinal cord.

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Father and son find unexpected connection

cavernous malformationMatty Siegrist and his dad Tim share the same thick brown hair and ready smile. They also share a trait that’s not so visible — a mutation in the CCM3 gene that causes cavernous malformations, abnormal blood vessels that form in the brain and spinal cord. When these blood vessels leak, they can cause seizures, headaches and a host of other problems.

A lively and high-spirited 2-year-old, it’s hard to believe Matty recently had brain surgery or that before the surgery he was struggling to walk because his balance was so poor. Matty’s surgery, performed by neurosurgeon Dr. Edward Smith, of the Boston Children’s Hospital Cerebrovascular Surgery and Interventions Center, had removed one of the larger malformations from his brain.

Tim also had brain surgery as a child, but at that time his doctors didn’t fully understand his condition or realize it was genetic. Tim rarely thought about it again until Matty started having strange symptoms, at around 13 months.

“He had been saying a few words, and then he just stopped,” says Matty’s mom, Jessie. “Then he started sleeping a lot. His doctor tested his thyroid and ran a couple of other tests, but they couldn’t find anything wrong.”

Concerned about these symptoms, Matty’s pediatrician recommended they see a neurologist near their home in Connecticut. The neurologist ordered an MRI and diagnosed the cavernous malformations, but she assured them that they often remained stable and didn’t require treatment.

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