
March 12 , 2003
FOR IMMEDIATE RELEASE
CONTACT: Tom Rosenberger, APR, Communications Department (513) 569-5260
CONTACT: Cindy Starr, MSJ, Communications Department (513) 584-2214 |
New Tri-State Brain Aneurysm Support Group Fills a critical void for survivors and their caregivers
CINCINNATI - Trying to resume a normal life after experiencing a ruptured brain aneurysm has been likened to coming home after a long trip and finding that everything has changed. The house is still there and the furniture is still there, an aneurysm survivor said recently, but everything looks and feels different. Tragically, the brain may no longer process information in quite the same way.
Mario Zuccarello, M.D., a neurosurgeon with the Mayfield Clinic & Spine Institute, and Laura Sauerbeck, a registered nurse and stroke researcher at the University of Cincinnati College of Medicine, have launched a new support group for aneurysm survivors and their families. The Tri-State Brain Aneurysm Support Group, which meets on the first Wednesday of every month, is believed to be only the second of its kind in the United States.
"The support group is wonderful for those people who just want to say, do you ever feel like this?" one of the group's members said. "You can't put a price on that. I'm finally with my own kind of people."
An aneurysm is an abnormal, balloon-shaped bulge on the wall of an artery. Aneurysms can occur anywhere in the body; but those that occur in the brain are often deadly. If they rupture, they can cause a bleeding stroke, a condition in which blood flows into the brain or into a protective membrane known as the subarachnoid space. Of the 30,000 Americans who experience a ruptured brain aneurysm each year, more than half die within 30 days, according to the National Stroke Association. Many who survive the rupture are left with significant deficits. Medical costs and lost productivity associated with aneurysms totaled $1.7 billion in 1992.
The primary risk factors for aneurysm, in order of importance, are smoking, hypertension and genetic predisposition. Ruptures occur most often in people between 40 and 60 years of age.
Support groups for aneurysm survivors are rare because many survivors are unable, or unwilling, to become part of a support group, experts say. "Unfortunately, patients are not necessarily willing to open up about their difficulties and problems," Dr. Zuccarello said. "Unless you find someone who triggers and nurtures this interest, frequently patients do not get together. They tend to be isolated."
Survivors, who tend to look very normal, face difficult issues in the workplace and with family and friends. Memory loss and depression are two common complaints.
"People in the workplace and government agencies need to be aware that even though these people are physically able to walk, run and use their hands, that doesn't mean they are ready to go back to work or resume their former activities," Dr. Zuccarello said. "You can recover from an aneurysm, but there's a period of time - sometimes a long period of time - when things aren't right. You may look good, but you don't feel good."
Ms. Sauerbeck said the Tristate aneurysm support group was formed as a result of frustration expressed by survivors and caregivers who were taking part in aneurysm research trials at UC. Participants in the aneurysm trials complained that they lacked a network for discussing issues related to everyday recovery.
UC researchers currently are involved in two major National Institutes of Health studies investigating the genetics of ruptured aneurysms. UC will receive $15 million over a five-year period to lead the Familial Intracranial Aneurysm (FIA) study, which is designed to identify the genes that cause the development and rupture of brain aneurysms. UC also has received a five-year, $5.2 million extension of the Genetics and Environmental Risk Factors for Hemorrhagic Stroke (GERFHS) study, which is examining the relationship between environmental causes (e.g. smoking) and genetic causes of ruptured aneurysms.
People who have a family history of aneurysm rupture should never smoke, Ms. Sauerbeck said. If they do smoke, they can reduce their risk of aneurysm rupture by quitting. Those at risk also should monitor their blood pressure.
Screening is advisable for those at high risk, because aneurysms often can be clipped surgically or neutralized with endovascular techniques before they rupture. Screening of the entire population would be unaffordable, Dr. Zuccarello said. "But I think we should promote screening for those at high risk. Anyone who is at least 30 and has a history of cigarette smoking and hypertension is at high risk."
The Tri-State Brain Aneurysm Support Group, which is seeking non-profit status and a permanent home, holds its monthly meetings at the UC Medical Sciences Building (room 3551), 231 Albert Sabin Way. Anyone wanting additional information about the support group can call (513) 558-1742.
The Mayfield Clinic & Spine Institute is recognized as one of the nation's leading physician organizations for clinical care, education, and research of the spine and brain. With 14 neurosurgeons and a neuro-oncologist, Mayfield treats 20,000 patients from 35 states and 13 countries in a typical year. Mayfield's physicians have pioneered surgical procedures and instrumentation that have revolutionized the medical art of neurosurgery for brain tumors and neurovascular diseases and disorders.
Mayfield is affiliated with the UC Department of Neurosurgery and The Neuroscience Institute, a neuroscience center of excellence located at The University Hospital in Cincinnati. Mayfield has offices throughout Greater Cincinnati and Northern Kentucky. |