It’s been 14 years and six surgeries since the Korcal family learned the phrase “Chiari malformation.”
The anomaly of the brain is characterized by a protrusion of a small part of the brain through the bottom of the skull and into the spinal canal.
First, eldest son Andrew Korcal was diagnosed at age 14, and then they realized it was also the reason for teen daughter Amanda’s lifelong struggle with headaches. Once her children were stable, mom Layna went to get her diagnosis, but her Chiari likely won’t require a surgery. She’s hoping her youngest son continues not to display any symptoms.
“Andrew and Amanda had different complications, but they both had really good outcomes,” Layna said.
Last week, the family from Lansing came to Ann Arbor to join the University of Michigan Health System’s Department of Neurosurgery at the 2015 American Syringomyelia & Chiari Alliance Project conference.
“We’re bringing together the leaders of thought in Chiari malformation and syringomyelia with patients who are eager to stay connected and informed,” said Karin Muraszko, M.D., U-M’s chair of neurosurgery, who performed Andrew’s surgery and then Amanda’s first surgery.
U-M pediatric neurosurgeon Cormac Maher, M.D., performed Amanda’s second surgery, giving her a VP shunt for the hydrocephalus, or a buildup of fluid on the brain. Dr. Maher has done a substantial amount of Chiari research and served as this year’s conference leader.
“The meeting had over 120 participants, including other researchers from around the country as well as patients that are affected by these conditions,” Maher said.
“The one big thing we took out of the conference was how great it was to see the research being done and the hope for families and patients in the future,” said Layna Korcal.
Layna and Amanda Korcal attend the 2015 American Syringomyelia and Chiari Alliance Project conference in Ann Arbor.
Patients like the Korcals not only took the opportunity to stay informed about the condition that affects their families, but also to meet others dealing with Chiari malformation and syringomyelia.
“I don’t remember a day when I was a kid that I didn’t have a headache,” says Amanda Korcal, now 21. After trying physical therapy, glasses, braces and headache medicine, Amanda got an MRI after they learned multiple people in one family could have a Chiari.
She had an idea of what to expect because her brother had already gone through surgeries years earlier, but Amanda imagined what other teens must be feeling after the diagnosis. She took the opportunity last weekend to meet young Chiari patients, even offering to stay in touch after the conference with one young teenager.
“I think it’s cool that she can see me now, because I have a good outcome. I’m in college, I’m living independently, I even studied abroad for a semester, and I still have headaches but they’re not debilitating,” Amanda said.
Their experiences with Chiari (and syringomyelia, for Andrew) have impacted both of the Korcal children’s career plans. Andrew is a pediatric resident at a children’s hospital, planning to work with children who have complex chronic health conditions. Amanda is studying child psychology at Aquinas College in Grand Rapids, in order to work with children with chronic pain.
“I wouldn’t have chosen this path if I hadn’t gone through what I did,” Amanda said.
Take the next steps:
Find out more about Neurosciences at UMHS
Read about the Pediatric Chiari Malformation Program at C.S. Mott Children’s Hospital
Karin Muraszko, M.D., is the chair of Neurosurgery at the University of Michigan Health System. She received her medical degree and completed her residency and fellowships at Columbia University in New York, then served as a researcher at the National Institutes of Health before joining the UMHS team. Dr. Muraszko specializes in pediatric neurosurgery, and her research interests include Chiari malformations, hydrocephalus, immunotoxin therapy for brain tumors, the biology of brain tumors, craniofacial anomalies and congenital anomalies of the brain and spine.
University of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.
The University of Michigan’s multidisciplinary neuroscience team is made up of more than 70 nationally recognized neurologists and neurosurgeons. Leading the way in brain, spine and nervous system care for close to 100 years, patients have access to services that can be found at only a handful of places as well as cutting-edge treatments with the latest research. Neurology and Neurosurgery at the University of Michigan Health System have been recognized by U.S. News & World Report numerous times for excellence in patient care.