NEW YORK (CBSNewYork) – A Connecticut boy started falling asleep in class, which led him to learn that he had a lethal brain problem.
As CBS2’s Dr. Max Gomez reported, surgery wasn’t an option, but an experimental brain glue saved the boy.
The problem was a massive blood vessel malformation in his brain, called an arterio-venous malformation, or AVM for short. World renowned neuro-radiologist Dr. Alex Bernstein routinely treats AVMs with medical-grade superglue. But this malformation was so big, he turned to the experimental brain glue.
“I just remember that I was falling asleep in the class,” said Shawn Svoboda.
That along with headaches were the first signs he might have a problem. His mother thought he was probably going through puberty, but his eighth grade teacher didn’t believe that explained it.
“The way she described it was that he was falling asleep, and she was having trouble waking him up. When she did wake him up, he almost couldn’t remember that he had actually fallen asleep,” his mom, Bonnie, said.
A sleep study followed by MRIs led to an unexpected and devastating diagnosis – Shawn had a huge AVM.
“That takes away blood from the normal brain. That congests the brain, it cannot drain. And it produces a series of neurological manifestations… from cognitive, mental, to skills of thinking,” said Dr. Bernstein.
Shawn would likely bleed to death with brain surgery. Dr. Bernstein is a pioneer of using a cross between superglue and epoxy to step-by-step block off the abnormal blood vessels in the AVM. But the usual glue is so dense, he would have to use so much of it.
“Not only we cannot tell what we accomplish, but more important, if it goes to the wrong place, we won’t see it until it’s too late,” he explained.
So Dr. Bernstein asked the Food and Drug Administration to allow him to use an experimental brain glue that would show up on X-rays but that’s partially transparent.
Six eight-hour procedures later, Shawn’s AVM is almost completely closed off – no more headaches, staying away, and grateful to a teacher who knew something was wrong.
“My teacher pretty much saved my life,” he said. “If it wasn’t for her, I’d probably not be here right now.”
The reason it took so many procedures is that after each one, Shawn’s brain and heart had to get used to new blood-flow demands and patterns, Gomez reported. The brain has to gradually adjust to its new normal.
He’s now back in school and hoping that his brain ordeal is over.