About 2 million Americans are walking around with undetected brain aneurysms, and researchers have launched an effort to better identify and treat these blood-vessel “blisters” before they rupture and cause severe damage or death.
Dr. Hunt Batjer, a neurosurgeon at Northwestern Memorial Hospital and a principal investigator for the study, says aneurysm ruptures appear to cluster in particular families, affecting a parent and children or multiple siblings. Researchers at Northwestern and 23 other sites around the country are studying DNA samples from brain-hemorrhage sufferers and their family members to see if they have a telltale genetic marker in common. If so, an inexpensive blood test for that marker would reveal which patients should undergo further screening.
Currently, aneurysms are identified with brain-imaging scans that cost up to $1,500 per patient, a price not covered by insurance for preventive care. A low-cost prescreening method would allow more focus on patients most likely to benefit from the costlier scan. “That becomes something affordable to our healthcare system as opposed to a shotgun approach,” says Batjer.
A brain aneurysm develops when a weak spot on the wall of an artery balloons out, creating a sac that fills with blood. When the aneurysm ruptures, it spills blood into the brain causing a hemorrhagic stroke. Although only a small percentage of aneurysms cause problems, the outcomes for those victims are devastating.
“There is something terrifying about [brain aneurysms],” says Batjer. “You can be perfect one second and dead in the next heartbeat.”
Although hemorrhagic strokes account for 20 percent of all strokes suffered each year, they cause nearly half of stroke deaths. Of the 20,000 to 35,000 people in the U.S. who experience a ruptured aneurysm each year, half die within the first month and a third survive but are left with severe disabilities.
“Once an aneurysm bleeds, the risk of death is about 50 percent.” Batjer says. “You have already lost the ballgame.”
That’s why his goal is to identify high-risk patients and treat them before a stroke occurs. But this aggressive approach has led to heated debate among neurologists.
Critics claim that the risk of hemorrhage is low in the average person with a small aneurysm, while the risk of injury during preventive surgery is high. “There is good evidence that most unruptured aneurysms don’t rupture,” says Dr. David Wiebers, a neurologist at the Mayo Clinic in Rochester, Minn. “They are not necessarily the ticking time bombs that patients worry about.”
He agrees that some unruptured aneurysms need to be surgically repaired, but that others are better left alone. “I think the answer is somewhere in the middle.”
Wiebers and his colleagues recently published findings from their study of more than 4,000 patients with unruptured aneurysms who received varying types of care, ranging from surgery to no treatment. After following the participants for nine years, the researchers found that aneurysms in patients that were smaller than 7 millimeters–about 1/4 inch–were not likely to burst. They also found that the risk for complications in surgery rose with patients over 50. Both findings suggested conservative strategies were best in dealing with many aneurysms.
Batjer, who has performed hundreds of aneurysm operations, counters by noting that surgeries done on any part of the body carry some risk of death. And the potential benefit of aneurysm surgery can justify the risk, he says. “If you find [patients with aneurysms] and select the ones that can be safely treated, you have protected those people for life.”
Ultimately, it’s up to the patient. Many who face the decision on treatment have personal experiences that color their choices. Those who have witnessed the pain of a loved one suddenly debilitated or killed from a ruptured brain artery may not be willing to risk the same uncertain fate.
Diane Roloff, 49, and her sister, Kathy Willert, 46, were 9 and 6 years old when their grandmother lay in a coma on Good Friday and died on Easter Sunday after a massive stroke. Forty years later, in April 2002, Diane suffered a similar attack and was in a coma for six weeks. After she awoke, she had to relearn how to walk, talk and bathe herself.
On her doctors’ recommendation, Kathy underwent a precautionary brain scan that revealed two aneurysms, 3.5 millimeters and 4 millimeters in size–about half of the typical size for rupturing aneurysms, according to Batjer. Kathy, who had witnessed her sister’s ordeal firsthand, chose the surgery even though the risk of hemorrhage was small. “I was scared,” says Kathy, who lives in Glendale Heights. “Watch and see, or surgery. It was my choice.” The operation was a success, and both she and her sister have recovered.
Willert’s challenging decision is one that many more patients will have to make in the next five years if the Northwestern study produces a blood test that can predict those at risk for brain aneurysms.
The study, funded by the U.S. National Institute of Neurological Disorders and Stroke, hopes to enroll 400 families–about 3,200 people–over the next five years from the U. S., Canada, Australia and New Zealand.
Sharon O’Koren, 63, whose mother and two sisters had brain aneurysms, knows how suddenly a rupture can change lives. “One day the phone rings and nothing is really the same,” says O’Koren, who lives in Chicago.
Sharon’s mother, Beulah Nulf, retired in 1982 with plans to travel with her husband, Edwin. Six months later, she suffered a fatal aneurysm at age 66.
In April 2002, her oldest daughter, Denice Peeples, 65, suffered a brain hemorrhage. Her only warning had been a terrible headache and extreme fatigue. Denice’s rupture was not as massive as her mother’s and she lives in a nursing home, able to walk with assistance but still suffering from brain damage caused by the rupture.
“Now you have the question in your mind,” O’Koren says. “Is it going to affect another of my family members?”
Doctors suggested that she and her other sister, Marsha Stark, 61, be scanned as a precaution. Sharon was told she had nothing to worry about, but Marsha had four brain aneurysms. Her doctors told her that the two on her brain stem were within a few years of rupture. She decided to have surgery, and Batjer sealed off the aneurysms with tiny clamps.
“I am very tickled that my mother was able to have her surgery and came out so well,” says daughter Brooke Hockett, 37, of Little Rock, Ark. Hockett believes that without the surgery, her mother may have lived only a few more years.
Beulah Nulf’s daughters and granddaughter are participating in the Familial Intercranial Aneurysm Study. For more information, call Northwestern Memorial Hospital at 312-695-8143.
