Last year Tom and Terri Hughes sat in a tidy hospital waiting room while their 13 year old son Troy underwent brain surgery. Hours later, when Troy’s surgeon, Dr. Neil A. Feldstein from the Pediatric Neurosurgery Center emerged from the operating room and asked Tom and Terri into a small side room, Tom remembers, “that was the longest ten feet I ever walked.”
Troy’s parents were still reeling from the sudden diagnosis of Hydrocephalus and Chiari Malformation given to their son just a few weeks earlier. Conditions that were only discovered after he and another kid butted heads in a football game, he got a headache that would not go away, and he finally had an MRI.
With a Chiari Malformation, part of the brain, the cerebellum, actually protrudes down into the spinal canal. Hydrocephalus, also called water on the brain, is a condition where there is a buildup of cerebrospinal fluid and pressure in the brain, one sign of which may be a larger than average-sized head.
Tom says, “Before surgery we didn’t know anything was wrong with Troy. He always had a kind of big head. We had a hard time finding hats and helmets that fit him, but I have a big head too and so does my dad, so we didn’t worry about it. He did occasionally get headaches, but lots of people do. His grades were dipping lately, also, but we thought it was because he was getting more interested in sports.”
Dr. Feldstein said that the Chiari Troy was diagnosed with was mild enough that surgery wasn’t necessary. He said, though, that he did need to surgically address the hydrocephalus because of the pressure it put on Troy’s brain. He also wanted to make sure that his football injury hadn’t caused any bleeding.
Dr. Feldstein was able to perform a newer procedure called an endoscopic third ventriculostomy for Troy. In this minimally invasive surgery, surgeons work with tiny instruments, endoscopes, and a sophisticated computer and CT scanner to precisely map the patient’s brain. They are able to locate the third ventricle and insert a small narrow scope directly there with minimal disruption to surrounding brain tissue.
The ventricles (there are four of them) are cavities deep in the brain where the cerebrospinal fluid is produced. Once Dr. Feldstein reached the third ventricle, he made a small hole in its floor, essentially creating a drain for the cerebrospinal fluid to keep it from building up in his head.
After surgery, in that small side room at Columbia Presbyterian Hospital, Dr. Feldstein told Tom and Terri, “Troy did great. He’s a strong boy. Just remember, no more contact sports.”
Fortunately, Troy loves all sports, not just football. He was, in fact, a pretty good basketball player and just one week after his surgery, with a still-bald head and stitches, Troy entered a local free-throw contest.
“It was amazing. There he was at the free throw line,” his dad said, “showing incredible focus and agility when a week before he was having brain surgery.” Troy went all the way to the New Jersey State Free Throw Championships and took second place.
That wasn’t good enough for Troy, though, so he kept practicing. Over the next year, not only did his free-throw get better, his headaches went away, and his grades started to come up. His dad said, “Where he was getting C’s and D’s before surgery, he started getting A’s and B’s.”
Troy started high school in the fall of last year, with a renewed sense of purpose. He joined the cross country and basketball teams and according to his dad, he started doing something uncharacteristic of the average teenager, he started to give back.
A little background: Troy had a personal hero, a minor league baseball player named Joel Stevens. Joel had been a local high-school athlete like Troy who did so well that after high school he was recruited by the Baltimore Orioles. His career was cut short though, when, at the age of 22, Joel died of colon cancer. After he died, his teammates set up a charity for sick kids called Joel’s Kids.
When Troy’s illness was discovered, his dad called Joel Stevens’ old high-school coach who was also a personal friend of the family. Coach Mike sent Troy a commemorative wrist band with Joel’s old number 24 on it and said the whole school was rooting for him.
Troy continues to wear that wristband and this year he decided that for every point he scored in basketball, he’d give one dollar of his own chore money to Joel’s Kids.
By mid March, Troy had earned a ton of points, his parents matched the money, and at the end-of-season banquet, the basketball booster club presented Troy with a check that matched the money once more.
That banquet, coincidentally, was held the night before this year’s New Jersey State Free Throw Championships. Once again, Troy had won his way to a place at States and this time he was determined to come in first.
In the end, Troy and another kid were tied, both with 23 out of 25 shots. They called a “shoot out” and Troy won it (3/5 to his opponent’s 1/5). Keep up the great shots, Troy! We’re rooting for you!
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