CINCINNATI—Recovery from a brain aneurysm can be a long, difficult process, fraught with misunderstanding and frustration on the part of survivors and caregivers alike.
That’s why events such as the annual Brain Aneurysm Symposium scheduled for this month on the University of Cincinnati (UC) medical campus are important to both groups, says Laura Sauerbeck, a registered nurse and adjunct assistant professor in the UC Department of Neurology and Rehabilitation Medicine.
"You don’t necessary see the physical disabilities with brain aneurysm patients, and their families sometimes get frustrated with them because while they may look like they are back to normal, they’re not acting normal. Then the survivors get upset because nobody understands their situation and they have nobody to talk to about it.”
That’s where the Tri-State Brain Aneurysm Support Group, Inc., steps in. Now in its 11th year of existence, it was begun by Sauerbeck, who coordinates and manages neurological research at UC, at the request of Mario Zuccarello, MD, who now is professor and chairman of the UC Department of Neurosurgery and holds the Frank H. Mayfield Chair for Neurological Surgery.
"The group’s mission is to support both the survivor and the family to understand what is going on in the recovery process,” Sauerbeck says.
This year’s symposium is called "Quest for the New You” and will focus on self-care and the recovery phase for brain aneurysm survivors. The free program will offer formal presentations by UC Neuroscience Institute experts and informational displays. Survivors, caregivers and health care professionals are welcome to attend.
The program will take place from 8 a.m. to noon Saturday, April 20, at the Vontz Center for Molecular Studies on the corner of Eden Avenue and Martin Luther King Drive. Parking will be available at the nearby UC Health Physicians Office.
A brain aneurysm is a weak, bulging spot on the wall of a brain artery. The aneurysm may eventually rupture, allowing blood to escape into the area around the brain (subarachnoid hemorrhage). When that happens, advanced surgical treatment is often required. Treatment options include surgical clipping, coiling and bypass.
Chillingly, unruptured brain aneurysms often have no symptoms. The Brain Aneurysm Foundation estimates that 6 million Americans have an unruptured brain aneurysm that has gone undiagnosed. When an aneurysm does rupture, the foundation says, about 15 percent of the victims die before reaching a hospital. Overall, the foundation says, ruptured brain aneurysms are fatal in about 40 percent of cases. Of those who survive, about 66 percent suffer some permanent neurological defect.
"There’s often not a support system once a patient is discharged from the hospital,” Sauerbeck says. "They go through a myriad of recovery steps, and we hear common complaints that include severe depression, fatigue, memory loss and headaches.”
Large unruptured aneurysms can press on the brain or the nerves stemming out of the brain and cause symptoms, including localized headache, blurred or double vision, pain in the vicinity of the eye and difficulty speaking. The foundation suggests that anyone experiencing such symptoms should undergo immediate evaluation by a physician. Diagnostic tests include X-ray, angiogram and magnetic resonance imaging (MRI) scan. With some unruptured aneurysms, the physician—in consultation with the patient—may choose to observe the aneurysm over time, assessing the risk of hemorrhage vs. the risk of surgery.
Sauerbeck says it’s important to know your family medical history, as family history of brain aneurysm is among the top indicators of future aneurysms.
The No. 1 risk factor, she says, is cigarette smoking, followed by hypertension and gender—women, more than men, suffer from brain aneurysms at a ratio of 3:2.
In addition to the annual symposium, the Tri-State Brain Aneurysm Support Group meets on the first Wednesday of every month at 6:30 p.m. in the cafeteria of UC Medical Center. Meetings typically include a speaker and time for socializing.
"The feedback we get from not only the survivors but also the family members is that they are so relieved that they have somebody to talk to who has experienced this," Sauerbeck says. "They have formed a family type of support system."