Susan Rioff, a 51-year-old mother in Lexington, was enjoying her last ride at a Wyoming dude ranch four years ago when her horse bolted, tossing her onto her (helmetless) head.
For 24 hours, she hovered near death. For another 24, she slipped in and out of consciousness. Slowly, amazingly, she recovered, and today she is once again performing with her choral group and caring for her kids. But she’s upfront about her daily struggles with depression, suicidal thoughts, memory problems and the “invisibility” of her injury.
“I have numbness in one leg and I can’t taste or smell, but nobody can see that. I feel very upset about that. People talk about what they eat and smell all the time,” she says.
Dr. Claudia Osborn, 43, was an osteopathic physician in Michigan 10 years ago, when she got hit by a car while riding – also helmetless – on her bike. Her brain was severely injured.
She, too, recovered enough to write a book about it. But she can’t practice medicine – though she can teach – and needs beepers to stay focused on basic tasks like cooking and driving.
By comparison, Diane Stoler, 51, a North Shore psychologist, is lucky: She can practice part-time, despite her brain injury eight years ago, when she suffered a stroke while driving and had a head-on collision. But she’s had to re-learn everything: “I had no idea what money was – I had just green paper and metal coins. There was no such thing as time.”
Every year in this country, 2 million people suffer a traumatic brain injury. More than 373,000, perhaps half a million, need hospitalization; an estimated 60,000 die.
In fact, accidents are the leading cause of death in people under 24, and brain injuries account for the lion’s share of those fatalities. Many such injuries are caused by car crashes, assaults, and riding bikes, including motorcycles, without helmets.
But treatment is improving dramatically and should get even better as hospitals adopt guidelines promulgated two years ago, especially if new therapies now being tested pan out. Many hospitals, including the major Boston medical centers, are now following these guidelines.
In the 1970s, 55 percent of brain-injured patients died, says Dr. Jam Ghajar, president of the Aitken Neuroscience Center in New York. In the 1980s, as doctors learned to monitor brain pressure caused by swelling after injury, the death rate dropped to 35 percent, he says.
Now that they’ve also learned to keep systemic blood pressure high enough to further counteract brain damage from oxygen deprivation, deaths are down to 20 percent or less – at least at major trauma centers.
And new treatments, including hypothermia – chilling patients to 89 degrees Fahrenheit to reduce brain damage – may help more.
In a study of 82 patients published last year, a team led by Dr. Donald W. Marion, director of the brain trauma research center at the University of Pittsburgh, found hypothermia speeds neurological recovery and doubles the chance of a good outcome, apparently because it decreases brain metabolism and therefore its need for oxygen.
Several weeks ago, a hypothermia study of about 400 patients sponsored by the National Institutes of Health was stopped early by reviewers. NIH won’t say why yet, but in general, reviewers do this only if they think the outcome is already so obvious it would be unethical to deny patients access to a clearly effective treatment, or to expose them further to a dangerous or useless one.
With many brain injuries, the most devastating problems are caused not by the initial blow but by the bruising and swelling that occurs after the brain has been bounced harshly inside the skull. Usually, bruising happens right away, but swelling increase for several days.
When bleeding occurs, blood vessels go into spasm, which reduces blood flow, causing parts of the brain to become oxygen-deprived. Blood clots, which often need to be removed surgically, can also develop, often between the brain and the meninges, the covering surrounding the brain.
Even where there is no bleeding, brain injury can disrupt a delicate system called the blood-brain barrier. Normally, the walls of blood vessels keep large molecules from seeping into the brain. After a brain injury, the walls become more porous, allowing substances that cause no harm in the blood to leak in to the brain, where they become toxic.
The biggest culprit is cytokines, products made by white blood cells that can be toxic to nerve cells. White blood cells themselves also rush into injured areas of the brain, where they help mop up dead cells but also contribute to swelling.
Making matters worse, damaged brain cells also secrete glutamate, a neurotransmitter that, at normal levels, is essential for brain function. But glutamate can soar to 100 times normal after a brain injury, says Dr. Ross Bullock, a neurosurgeon at Virginia Commonwealth University.
At those levels, glutamate is a bad actor indeed. It lands on NMDA receptors on brain cells, causing calcium to rush into the cell, which triggers swelling and cell death. Despite numerous studies, drugs designed to block NMDA receptors have failed to stop this deadly glutamate cascade, though a study is now under way to see if magnesium will work.
Several years ago, alarmed by a string of disappointing results from clinical trials and inconsistencies in treatment among medical centers, a dozen leading neurosurgeons gathered to pore over the studies and come up with treatment guidelines for people with brain injuries.
They found solid data showing that three common treatments were of no value: routine hyperventillation (mechanically forced respiration); steroids (which had been thought to reduce brain swelling); and long-term use of anticonvulsants (which don’t prevent epilepsy after more than a week of use).
Based on somewhat less solid data, they did find reasons to recommend other treatments – inserting a tube into the brain to monitor intracranial pressure, keeping systemic blood pressure high enough to get oxygen into the brain and, if necessary, using barbiturates to reduce the brain’s demand for oxygen.
In 1996, the group sent its recommendations – free – to all members of the American Association of Neurological Surgeons and the Congress of Neurological Surgeons, and they have been widely accepted as authoritative.
Recently, other treatments have come under intense study.
Because the injured brain is hyperexcited, researchers are trying to see if they can block the excessive firing of neurons with drugs that act on GABA receptors on the cells.
They’re also exploring ways to block genes that trigger cell death and methods to find special progenitor stem cells in the brain that can be nudged to grow into healthy neurons to help the brain regenerate.
Even if all these advances help, recovery from a devastating brain injury will still take months, sometimes years, of rehabilitation as the brain “starts rewiring and healing itself,” says Mary Ellen Cheung, an NIH neuroscientist.
Rehabilitation is necessary for milder injuries, too, which can be frustrating precisely because they are so subtle.
A brain-injured person may look and sound normal, says Howard Noe, a psychologist at Health South New England Rehabilitation Center in Woburn, but still have to work hard to remember things and fight against the tendency to become distracted.
Noe recalls one patient who was driving when she was distracted by something rolling on the floor on the passenger side. She forgot she was driving and crashed into a tree.
But perhaps the most basic key to recovery from any kind of brain injury is to acknowledge the deficits. “Don’t be afraid to talk about it to other people, even though they can’t see it,” says Rioff of Lexington. “It’s a part of you that matters a lot.”
1. THE TOLL BRAIN INJURIES TAKE
PLEASE SEE MICROFILM FOR CHART DATA GLOBE STAFF CHART
2. To learn more
For more information, call:
- Brain Injury Association, 1-800-444-6443.
- Massachusetts Brain Injury Association, 1-800-242-0030.
On the Internet, look at www.ninds.nih.gov
You might also want to read the following books:
- “Over my Head,” by Claudia L. Osborn, Andrews McMeel Publishing, Kansas City.
- “Coping with Mild Traumatic Brain Injury,” by Diane Roberts Stoler and Barbara Albers Hills, Avery Publishing Group, Garden City Park, N.Y.