An accident, then an unexpected diagnosis

When Nicholas collided with another hockey player during practice two years ago, the family worried that he had a concussion.

The hit was hard enough that Nicholas, 11 at the time, blacked out for a few seconds. But then he got up and seemed fine. His parents, Mary and Peter, kept him off the ice for several days after the collision as a precaution. Because Nicholas had no symptoms of a concussion, his pediatrician told his parents to monitor him, but that Nicholas was okay.

A few weeks before the hit, Nicholas had been complaining that his helmet felt tight after hockey practice. This continued in the two months after his accident. On a Friday afternoon in June, he also told his mom he had a headache, which was unlike him.

“He usually doesn’t have headaches unless he has a fever,” Mary said.

Before he went to bed, Nicholas said he felt nauseous. Around 3 a.m., he woke up with more pain, so his parents drove him to the Advocate Children’s Hospital Emergency Department in Park Ridge, Ill. Doctors performed neurological tests and a CT scan. The scan revealed a mass on Nicholas’ brain.

“Of course, you think the worst,” Mary said. “They told me it could be a mass or bleeding in the brain, but they weren’t sure.”

Dr. Robert Kellogg, a pediatric neurosurgeon with Advocate Children’s Hospital, immediately ordered an MRI to learn more about Nicholas’ condition. The MRI revealed that Nicholas had an arachnoid cyst, which had been present since birth.

“Arachnoid cysts are expansions of normal spinal fluid containing spaces in the brain.,” says Dr. Kellogg. “They occur in less than 3 percent of children and are more common in boys than girls.”

Nicholas’ cyst had ruptured, causing heavy bleeding on the right side of the brain. The cause of the rupture is unknown, but Dr. Kellogg says it’s possible the hit had caused the cyst to start leaking. The leak was small, but leaking daily and causing a large amount of blood to build up in Nicholas’ brain. That ultimately led to the headaches he experienced.

“We had no idea he had a cyst,” Mary said. “Growing up he was perfectly fine. He met all of his developmental milestones and had no delays. There was no indication there could be something wrong.”

Once the diagnosis was made, Nicholas was immediately prepped for surgery. Dr. Kellogg drilled a burr hole into the skull over the area of the hemorrhage to allow the blood to drain. The cyst could not be removed because of its location in the brain, but by draining the cyst, Nicholas was no longer in immediate danger.

Dr. Kellogg said Nicholas did great with the surgery and is now back to his normal self. The urgency and critical nature of Nicholas’ condition was terrifying for his family, but Mary says Dr. Kellogg and his physician assistant, Laura Hunnell, were very reassuring throughout the whole process.

“I can’t say enough about the doctors and everyone taking care of him,” Mary said.

Nicholas had an MRI every three months for a year post-surgery to monitor the cyst. The scans showed no change in the cyst, and he now only needs a scan once a year. He cannot play contact sports and must be careful to avoid activities where he could hit his head, but he is back in school, participating in more activities and doing well. Although he must be careful, Nicholas was cleared to participate in gym class and is starting to ride his bike and ski again. Mary says her son loves to be active and enjoys spending time outdoors.

“There is nothing he doesn’t love when it comes to the outside – horseback riding, sledding, ice skating – he still loves it,” says Mary.