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Local doctor saves teen from rare condition

December 23, 2009 12:00:00 AM PST
A 17-year-old from Canada is so sensitive to the light he couldn't even come forward to be interviewed on camera. Dylan Nielsen suffers from a rare condition following a fall. In Canada, his family suffered years of heartache after numerous doctors failed to diagnose his condition. Soon, Dylan may have the chance to feel the warmth of the sun thanks to the generosity of a local doctor.For the past five years, 17-year-old Dylan Nielsen lived his life in the dark. A hint of light would send him into seizures and fits of pain. Doctors told this outdoor living boy the whole thing was in his head.

"We're just living in the dark every day for so long and suffering. And nobody believed us. The doctors, I mean," said Penny Nielsen, Dylan's mom.

The problem was in Dylan's head. All this time, Dylan had a pineal cyst in his brain stem. The problems started the day after he fell snowboarding.

"The lights were bothering him. He hated to go to school because the fluorescent lights in school were just driving him nuts," said Tyler Nielsen, Dylan's dad.

He lost his short term memory. Doctors in Canada called his symptoms depression or cries for attention.

After hours of painstaking Internet research, Dylan's mother discovered Dr. Harar Shahinian of L.A.'s Skull Base Surgery Institute. Not only did the doctor determine the exact cause, he said he could remove the cyst through a minimally invasive technique. And he offered to perform the surgery for free.

"We can't describe the feeling of elation," said Mrs. Nielsen.

When the surgery was done in the past they used to pull back a large section of skin behind the ear and cutting through a lot of tissue to get to the brain. Now Dr. Shahinian's uses smaller endoscopic tools that fit through dime-size hole.

"His tools fit through the natural crevices in the brain. So he's not shifting anything around he is in and out basically," said Mr. Nielsen.

Dr. Shahinian discovered two cysts in his brain. He removed both of them. He says in three to six months, Dylan's parents will see their son return to normal. It'll be a happy ending to their long and lonely struggle.

"You've got to go through. You've got to get to the bottom of it. It's like peeling an onion, taking the layers off and you need to get to the center and find out what's is going on," said Mr. Nielsen.

Even though, it'll take several months for Dylan to fully recover. Dr. Shahinian says Dylan should be able to see some benefit right away. He might be able to handle a little sunlight in the next two weeks.


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