Changing the Warrior Culture: Concussion and UW Medicine
By Delia Ward
By the time Zackery Lystedt left the football field on Oct. 12, 2006, his life had been irrevocably changed. The 13-year-old from Maple Valley, Wash., took a blow to the head near the end of the first half, and though he sat out for several plays, he was returned to the game at the start of the third quarter.
Zack played fullback on offense and outside linebacker on defense for most of the second half. But at the end of the game, he was stumbling and having trouble seeing, says his dad, Victor Lystedt. Then Zack collapsed. “He was having convulsions, and I was trying to talk to him,” says Lystedt. “I knew it was really bad.”
Zack was airlifted to Harborview Medical Center. When his parents arrived, he was already in surgery to relieve the massive blood build-up in his brain.
The teenager would eventually spend 33 days in a coma at Harborview, more time in a nursing home for children with severe brain injury, then 60 days at Seattle Children’s — all the result of a concussion that became a more severe brain injury.
Concussion: traumatic brain injury
The Centers for Disease Control and Prevention define concussion as a traumatic brain injury or TBI, and as many as 3.8 million people sustain sports- or recreation-related concussions every year. Like other TBIs brought on by blows to the head, jolts to the body or shock waves, concussions can range from mild to severe.
All brain injuries are potentially serious, and concussion is definitely being taken more seriously these days, says Richard G. Ellenbogen, M.D., UW professor and chair in the Department of Neurological Surgery, Theodore S. Roberts Endowed Chair in Pediatric Neurosurgery, and newly appointed co-chair of the National Football League’s Head, Neck and Spine Medical Committee. Why? “Our imaging is better, our knowledge of medicine is better,” he says.
More specifically, medicine shows that continuing to play after an initial concussion, as in Zack’s case, can be devastating. “In the brain, at least in a short interval, one plus one equal five,” says Randall M. Chesnut, M.D. ’84, Intern ’84–’85, UW professor in the Department of Neurological Surgery, Integra Foundation Endowed Professor in Neurotrauma, and Zackery’s surgeon. “It’s a bad combination. You can’t add up brain injuries, particularly close together.”
It seems that repeated TBIs, even mild ones, may have long-term consequences for youth athletes. Researchers are now learning that there are also long-term consequences to other groups, such as professional football players and veterans returning from Iraq and Afghanistan.
At UW Medicine, physicians and researchers are investigating the effects of traumatic brain injury on athletes and veterans, as well as providing treatment and advocacy for TBI. Two recent, effective efforts include the passage of the Zackery Lystedt Law and the creation of the Seattle Sports Concussion Program.
The Lystedt Law and the Seattle Sports Concussion Program
Stanley A. Herring, M.D., UW clinical professor in the Department of Rehabilitation Medicine and one of the team physicians for the Seattle Seahawks and Seattle Mariners, remembers the first time he met Zack Lystedt. When he saw a boy in a wheelchair at a Seahawks practice — accompanied by Richard H. Adler, a prominent injury lawyer and then-president of the Brain Injury Association of Washington — he went over to have a chat.
“The Seahawks fell in love with the family,” says Herring, who has worked in sports medicine for almost 30 years. “The next thing I know, Richard, the Seahawks and I were working on a statewide education program [with school districts, athletic associations and others]...I spoke to 1,000 coaches over the course of a year; we had newspaper articles, and the Seahawks and KING 5 TV produced a public service announcement.”
At the time, there was a standard for how to treat student athletes with suspected head injuries. Unfortunately, it wasn’t applied evenly. Some school districts knew about it —“when in doubt, sit them out” — but many did not. Adler, Herring and the Lystedt family realized they had to do more than educate. They had to make the standard into a law.
“We’re providing a service that no one else in the state really provides.”
— Richard G. Ellenbogen
When Adler is asked about taking on the legislative process, he laughs. “It’s not for the meek or mild,” he says. Still, with his guidance and development of key stakeholders, such as Washington State Youth Soccer, the Washington Interscholastic Activities Association, the Washington State Athletic Trainers Association and the Washington State Insurance Risk Pool, the House and the Senate voted unanimously in favor of the Zackery Lystedt Law, and it was signed by Gov. Chris Gregoire on May 14, 2009. In addition to requiring that youth athletes be removed from play after a potential head injury or concussion, the law has two other key provisions: that healthcare providers must clear students to return to sport, and that both athletes and parents must sign an information sheet about concussion prior to the start of each season.
Then came the next step: the July 2009 opening of the Harborview-based Seattle Sports Concussion Program, a collaboration between UW Medicine and Seattle Children’s. Herring and Ellenbogen are the program’s co-medical directors.
“What the center has permitted us to do is to see patients quickly and appropriately, get them the correct therapy, get them the diagnosis,” says Ellenbogen. “A lot of times, the diagnosis is not clear.” And, with the center’s ability to make “return-to-play” decisions, he says, “we’re providing a service that no one else in the state really provides.”
No shortcut to recovery
What services does the Seattle Sports Concussion Program provide? Herring says it does a great deal of outreach and advocacy in addition to patient care. “The great majority of concussions don’t go to the hospital, but we work with coaches and athletic trainers to have a plan in place…when they see a potential concussion, their job is to take the player out,” he says. The program also provides diagnostic testing and treatment options.
Andrew Little, a certified athletic trainer for Seattle Children’s at Roosevelt High School, says the “when in doubt, sit them out” policy is working. At Roosevelt, Little makes the call about returning kids to play. “The coaches understand the importance of the policy and have embraced it,” he says. In addition, Little keeps student athletes — who sometimes think they’re invincible — honest. Little sends kids with complex concussions to the Seattle Sports Concussion Program. At the hospital, “they may deny [their symptoms],” says Little. But it’s harder to deny a symptom, he says, when the doctor and the athletic trainer are comparing notes.
All concussions, even minor ones, require physical (and often cognitive) rest, and rest is an essential part of each treatment plan put in place by the program’s physiatrists, pediatricians, sports medicine physicians, neurosurgical consultants, licensed athletic trainers, nurses and neuropsychologist. These plans include modified activities at school and at home: less homework, texting and video games, and a cautious and gradual return to sports. “There’s no shortcut,” according to Herring, who says recovery time may span a few days, a few weeks, even a few months. If the episode was significant — if it was a severe concussion, the last in a series of concussions, or if there were long-lasting symptoms — the Seattle Sports Concussion Program might recommend a different sport for the student.
The program focuses on student athletes, says Herring, because children and young adults need special care; they may be more vulnerable to concussions and take longer to heal than adults. “[Children’s] brains seem to be different in terms of recovery time,” Herring says, “but also they have a unique disruption of autoregulation of blood flow to the brain that makes the brain swell massively if two blows are taken together.” This is a rare occurrence, but often fatal when it happens.
Then, too, there’s a lot at stake academically. “There’s an adjective that comes before the word ‘athlete’ and it is ‘student,’” says Herring. “It’s one thing to miss three weeks of lacrosse or soccer or football, but they’re also missing algebra and driver’s ed and social development.”
Rehabilitation and the “orphan” disease
For some children, like Zack Lystedt, head trauma requires comprehensive rehabilitative therapy, sometimes years of it. That’s where UW Medicine’s Department of Rehabilitation Medicine and UW Medical Center’s Brain Injury Rehabilitation Program come into the picture. Kathleen R. Bell, M.D., Res. ’84, UW professor in the Department of Rehabilitation Medicine, is the program’s physician and the project director for UW Medicine’s Traumatic Brain Injury Model System.
“Lives often change rather drastically after TBI, and there’s a lot of learning how to deal with your new life and your new abilities.”
— Kathleen R. Bell
Bell is also Zackery’s attending physician for rehabilitation. What you often hear, she says, is that severely injured patients have a one-year window in which to make progress. After that, the patient won’t get better. “Zackery is certainly putting the lie to that,” says Bell.
It took nine months after his injury for Zack to say his first word — now he’s rhyming with his favorite rap stars. It took 20 months for him to hold up his body, a milestone also marked by the removal of his feeding tube. Now, four years after the injury, his dad reports that Zack can get out of his wheelchair and stand; he uses a walker and is learning how to use stairs. The Lystedt family has worked together on these achievements. Mercedes Lystedt, Zack’s mom, is a full-time caregiver, and she manages the 40 hours a week Zack spends in therapy at various facilities.
At UW Medical Center, says Bell, they work on walking and strength, and on cognitive and intellectual skills: reading, writing, memory. Zack also gets counseling. “One of the things that people have to deal with is that their lives often change rather drastically after TBI, and there’s a lot of learning how to deal with your new life and your new abilities,” she says.
Not everyone with TBI has the support of a loving family and comprehensive medical care. In part, says Bell, this is a feature of the medical system, geared to pay for short-term issues. “That acute attention is there, but brain injury isn’t something that gets better in 12 weeks, like a fracture does,” Bell says. And given the cohort of people who sustain TBI — young men between 15 and 24 are the largest group — that’s an unfortunate situation.
“We’re still hoping somewhere out there, somebody will recognize how much of a need there is to support research.”
— Randall M. Chesnut
“These are not people who have jobs, these often are not people who have established relationships, they’re still learning how to be adults,” says Bell. “And now they’re given an injury which makes it even harder for them to get a job, to find relationships.” There are only four daytime treatment programs in the state for people with TBI, she says. “If you can’t go to work, but you’re not developmentally delayed, you fall between the cracks,” says Bell. (For more on this topic, please see the related story.)
Other researchers echo the sentiment — that not enough attention or funding has been directed toward brain injury. “Brain injury is the greatest ‘orphan’ disease there is,” says Chesnut, even though it’s the No. 1 cause of death and disability for Americans 45 and under. “We’re still hoping somewhere out there, somebody will recognize how much of a need there is to support research.”
Brain-injury repercussions: short- and long-term
Scientists agree; brain injury research is a young field, as is treatment. “Brain injury management isn’t that old,” says Chesnut. Even in the mid-twentieth century, brain injury was mostly treated by in-hospital observation.
“A lot of the fundamental physiological derangements that occur at the time of trauma are only poorly recognized and poorly understood,” Chesnut says. Take intracranial pressure — the swelling of an injured brain against the skull. In many institutions (but far from all of them), patients are treated based on their intracranial pressure level. But, says Chesnut, there’s no randomized control data to prove that treating based on pressure improves patient outcomes, which leads to wide variations in care.
He and his colleagues, however, are collecting such data, and the results should be back in a little over two years, giving physicians the tools to improve their practice.
For her part, Elaine Peskind, M.D. ’86, Res. ’90, UW professor in the Department of Psychiatry and Behavioral Sciences and the UW Friends of Alzheimer’s Research Endowed Professor, would say that many of the long-term physiological repercussions of brain injury aren’t well-understood, either. Peskind studies veterans from Iraq and Afghanistan at the VA Puget Sound Health Care System in Seattle. They present with a whole host of chronic symptoms — forgetfulness, anxiety, slowed thinking and dizziness among them — all symptoms in evidence two to seven years after their last exposure to blast-induced shock waves.
She and her colleagues, including Donna Cross, Ph.D., UW research assistant professor in the Department of Radiology, recently made a significant breakthrough. They used sophisticated imaging techniques to show that these vets’ brains were different — both functionally and structurally — than the brains of vets without symptoms. “This is the first demonstration, with more objective evidence, that there are changes in the brain,” says Peskind. (For more on this topic, please see the related story.)
Much remains to be discovered about head injuries and long-term cognitive health for veterans and for athletes. For instance, Peskind notes that head injury is a risk factor for Alzheimer’s disease, a condition often acquired later in life. In addition, repeated head trauma, including sports-related repetitive concussion (like that experienced by boxers, football players, soccer players and hockey players) appears to be a risk factor for a type of dementia that strikes in mid-life: chronic traumatic encephalopathy (CTE).
Unfortunately, signs of CTE have been found in the brains of younger athletes — like that of late Cincinnati Bengal Chris Henry (age 26). It might be, says Peskind, that veterans and athletes have similar brain injuries, and thus similar risks for cognitive impairment. Work regarding the etiology, prevalence and diagnosis of CTE — as well as treatment options for the condition — is ongoing.
Sports and (not versus) safety
Herring, Ellenbogen and their colleagues know that the next few years will bring new research discoveries related to concussion and traumatic brain injury. Together, they hope to be able to predict who’s most susceptible to TBI, how to better identify levels of injury and how to focus treatment, especially for the young athletes in their care.
Right now, though, they’re seeing a change in the “no pain, no gain” culture of sports, one brought about, in part, by the Lystedt Law.
“[Concussion] is really a public safety issue,” says Herring. Injury should not be confused with bravery, he says; coaches, parents, players and fans shouldn’t admire the athlete “who got clocked in the head, got right back up, and continued playing.” Instead, they need to make sure he or she isn’t hurt.
According to Little and Herring, and with the help of the Lystedt Law and the advocacy of the Seattle Sports Concussion Program, this “warrior” culture is changing in Washington. Teammates are looking out for fellow players. Parents understand the risks. Coaches are relieved, because they are no longer responsible for making return-to-play decisions. Instead, those decisions are made by medical personnel.
Victor Lystedt knows that tragic accidents still happen, but he also knows that the Lystedt family — along with Richard Adler, UW Medicine and Seattle Children’s — are helping save children’s lives.“What better gift can you give in this life?” asks Lystedt.
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