For weeks after Tyson Engel overshot a jump on his snowboard, hit his head and cracked his helmet, everything seemed relatively normal.
There were headaches, to be sure, and he had a hard time sleeping. He also got moody and took to talking back to his parents.
That was three years ago. The then-15-year-old had been snowboarding at Mt. Bachelor with a coach, who was training him to compete. After the crash, Tyson blacked out for a few minutes, took a breather in the lodge, then bought a new helmet and hit the slopes again.
“Every crash is like that,” he said. “‘Oh, I’m done for the day.’ And then five minutes later …”
More than a month after the fall, the high school freshman was back in classes when he realized something was very wrong. He had trouble paying attention and processing information, and it was hard to see out of the bottom of his left eye.
That’s when Tyson saw a doctor, who told the Bend teenager he had sustained a traumatic brain injury — TBI, in medical parlance — a head injury that damages the brain, causing everything from headaches and vision problems to concentration and attention troubles and mood problems.
Although the U.S. Centers for Disease Control and Prevention says Americans sustained 2.5 million TBIs in 2010, experts say TBIs are severely underdiagnosed, as many people don’t connect their symptoms to their injuries.
Tyson’s mother, Jennifer Engel, called the Center on Brain Injury Research and Training in Eugene, which has organized a statewide network of TBI educators. The center connected the Engels with Sue Hayes, the High Desert Education Service District’s TBI liaison and program supervisor. Hayes helps educate school districts and families on caring for students with TBIs.
Often, teachers don’t understand how a TBI affects a student’s ability to learn in a classroom, Hayes said. These students’ thinking is delayed, and they have trouble processing information.
“Every other student is running a mile every day, and this student is running a marathon,” she said.
In Tyson’s case, staff members with Bend-La Pine Schools organized a team that included teachers, medical experts, Tyson and his family to assess his unique needs. For the past three years, the group has monitored his special education coursework, tutoring, neurological testing, physical therapy and class schedule.
For Tyson, now 18, all of that work paid off. He’s about to graduate from high school and is moving to Steamboat Springs, Colo., this summer to attend Colorado Mountain College.
It was an especially important learning experience for the teachers, especially Tyson’s math teacher, Brad Soto, who is also a football coach at Mountain View High School, Jennifer Engel said.
“He received, for the first time, information on how to recognize students who have sustained a concussion — let alone a brain injury — and how to support them in the classroom,” she said.
Talking about TBIs
To illustrate just how underdiagnosed TBIs are, Hayes paints this picture: Some estimates say there are enough people with TBIs in the U.S. to fill Texas Memorial Stadium in Austin — which seats roughly 100,000 people — three times each year.
“We can’t even fill it once nationally,” she said, referring to the number of TBIs diagnosed annually in the U.S. “Here in Central Oregon, we’re a microcosm of that. It’s an invisible disability at some level. People can’t always see it.”
James Chesnutt, medical director at Oregon Health & Science University’s concussion program, said some estimates put the number of people with TBIs at more like 3.3 million, more than 10 times Hayes’ example.
Even so, the visual illustrates how important it is to have people like Hayes helping school districts recognize the signs of TBIs and teaching the districts to accommodate students dealing with TBI symptoms.
Symptoms show up differently in every person, which makes TBIs even more difficult to recognize, Hayes said. Some students might complain of headaches. Maybe they put their heads down in class because they’re tired. They might go from being an A student to a B or C student. They could look depressed, stop doing their homework or become impulsive.
“Maybe they’re lacking in attendance, not coming as often,” Hayes said. “You have to find out why. You have to dig deeper to find out why. Those are some things teachers might recognize in school, and parents.”
In some cases, teachers may think students are trying to be dishonest or deceptive with respect to their homework, attendance or behavior in class, Chesnutt said.
“A lot of times students are accused of either faking it or dramatizing it,” he said.
Tyson’s situation is common in that he didn’t realize he had a TBI until he was back in school and taking on the responsibilities and challenges of being in the classroom, Hayes said.
Kids with TBIs who are even younger than Tyson might do fine in, say, elementary school.
“But then they hit middle school where the demands get greater, and then that incident that happened when they were younger becomes more apparent,” she said.
Hayes’ organization, the High Desert Education Service District, provides services to school districts that aren’t in their budgets — speech and language therapy, education technology and legal services. It has offered TBI services for nearly 20 years, but still relatively few people are aware students can take advantage of such services, Hayes said.
The number of students with TBIs identified by the organization is constantly increasing, she said.
‘The big crash’
In their quest to learn more about TBIs, one fact forced Tyson and his parents to look back on the boy’s active 15 years of life.
“Concussions are cumulative,” his mother, Jennifer Engel, said, “and every time you get a concussion, the symptoms will get worse the more you have. … This was the big crash.”
When Tyson was just 5 years old, he was thrown off a horse at a birthday party. Around the same age, he hit his forehead on the side of the bed he was jumping on with his siblings, an injury that required stitches.
At around 10 years old, Tyson was laughing in the back row of the school bus and accidentally banged the back of his head against the window. That one needed staples.
Beginning in the fourth grade, he played three years of tackle football, an activity that, in hindsight, his mom said she regrets allowing him to do.
In middle school, someone’s out-of-control skateboard flew up the ramp Tyson was standing on and struck him just below the eye.
TBIs are elusive in that there isn’t always a specific blow to the head — like Tyson’s snowboarding accident — that ultimately triggers the symptoms, Chesnutt said. In some cases, a young person has been playing a rough sport for years and the symptoms seem to happen out of the blue, he said.
In those cases, “you have to think of other things in life that could be causing those symptoms other than just the fact that you’ve been hit every day for a whole season versus ‘I got knocked to the ground and had a headache after that,’” Chesnutt said.
Doctors don’t have a test that definitively diagnoses a TBI, said Chesnutt, also the co-director of the Oregon Concussion Awareness and Management Program. For now, the diagnosis is based off a list of biomarkers for TBIs that include physical symptoms such as headache, nausea and vomiting, behavioral symptoms such as mood and a patient’s sleep patterns.
Researchers, however, are trying to develop blood tests or brain wave patterns that would provide a clear answer, Chesnutt said. Such studies are painfully underfunded, he said. About $20 per person with a TBI is being spent on TBI research, compared with about $2,000 per person with Parkinson’s disease and multiple sclerosis, he said.
“It’s about 100 times less in terms of per person with injuries,” Chesnutt said. “That’s one reason that the research is so lagging because there hasn’t been as much invested in it, both in funding but also in personnel.”
Sitting in his living room with his parents, Jennifer and Dave Engel, Tyson, with chin-length hair and a hooded sweatshirt, looks and sounds like any high school student. To the casual observer, it’d be almost impossible to tell he suffered a TBI three years ago.
In fact, he still makes it to Mt. Bachelor to snowboard at least once a week, even though doctors told him he wouldn’t be able to after the TBI. For Tyson, snowboarding puts his mind at ease.
“I’m mentally and physically at peace,” he said. “I just feel more a part of nature than a part of the human species.”
— Reporter: 541-383-0304, firstname.lastname@example.org