Planning His Future
After neurosurgeons corrected complications from congenital hydrocephalus, Dan Kricke is headache-free and ready to get married.
Brain surgery isn't a typical test for a new relationship. Yet just a few months after they started dating, Gayle Shier found herself by Dan Kricke's side as he underwent the most critical brain operation in his life.
Both music lovers, the couple was introduced by mutual friends in July 2012 at the Pitchfork Music Festival, an annual event in Chicago featuring new and emerging bands. "We hit it off right away and spent the day together," Kricke said. After chatting online for a few weeks, Kricke asked Shier to meet for a drink, and their courtship began.
Less than six months later, Kricke underwent surgery at the University of Chicago Medicine to address complications from hydrocephalus. "Gayle played a huge role in helping me get through the operation and recovery," he said.
Looking for Help
Kricke, 27, was born with obstructive hydrocephalus -- a blockage in his brain that interferes with the normal flow of cerebral spinal fluid and raises pressure in the brain's ventricles. Just after his birth, doctors inserted a shunt to divert excess fluid away from his brain into another part of his body where it could be absorbed. Shunting devices are usually permanent, but they require lifelong monitoring and maintenance.
Although Kricke had many revision surgeries to maintain his shunt in his first dozen years, he only recalls the experience when he was 12. "I remember the headaches and vomiting," he said of the symptoms he had before pediatric neurosurgeons replaced malfunctioning parts in his shunt.
For the next 13 years, the shunt performed well. Kricke didn't think much about the device he had in his head. "I knew I had one and it was keeping me alive, but that was about it," said the corporate communications specialist. But when he was 25, he noticed worrisome symptoms including lethargy, consistent pressure in his head and "feeling strange overall."
Kricke contacted the children's hospital where he was initially treated only to learn that pediatric neurosurgeons there did not provide care for adults with his condition. During his search for an adult specialist in Chicago he discovered that most neurosurgeons do not treat older patients who have hydrocephalus or related nervous system disorders, such as Chiari malformation, spina bifida and syringomyelia.
Eventually, Kricke found University of Chicago Medicine neurosurgeon David Frim, MD, PhD. Frim leads one of the few programs in the nation that provide lifetime comprehensive care for patients who have congenital anomalies of the nervous system. "Our specialists understand the complex nature of congenital anomalies as well as the challenges these patients face as children and as adults," Frim said. The program includes experts in neurosurgery, neurology, orthopaedic surgery, urology, rehabilitation medicine and genetics.
Kricke says he felt comfortable with Frim from the beginning. "Dr. Frim sat down with me and went through everything," Kricke said. "He explained how hydrocephalus changes during adult stages and gave me options for my treatment."
Frim's neurosurgical team performed two revision procedures, each time modifying the shunt. "We did as little as possible to make improvements without causing too much trauma to the brain," he said. For example, the team upgraded the valve in Dan's shunt to one that could be programmed without surgery. Frim pointed out that the design and materials for shunts are technologically better than they were when Kricke was born.
With the likelihood of ongoing problems (e.g., scar tissue from multiple procedures can clog the shunt), Frim suggested Kricke consider a procedure called endoscopic third ventriculocisternostomy (ETV). During this minimally invasive operation, neurosurgeons create an internal bypass in the brain to reroute excess cerebrospinal fluid. In some cases, this procedure helps the shunt work better; in other instances, the patient no longer needs the device.
Solving the Problem
On February 3, 2013, Kricke woke up with a splitting headache. Tests at the medical center revealed the shunt tubing was clogged. Frim told Kricke the time was right for the internal bypass.
"We could continue to make him more comfortable with revisions, but without ETV, the headaches probably would have persisted," Frim explained. While he does not call the procedure a cure, Frim told Kricke that ETV would provide a long-term solution to hydrocephalus. Kricke responded with, "Let's do it."
Three days later, Frim performed the surgery. Using a neurosurgical endoscope, he created a tiny opening in the bottom of the third ventricle in Kricke's brain, allowing the cerebrospinal fluid to escape into the natural pathway in the area outside of his brain.
During Kricke's recovery, his mother and Shier took turns staying with him in the hospital. Shier says the experience resulted in a lot of soul searching for the couple. "When you are young and in a relationship, you don't think that you will have to deal with something so heavy," she said. "But when you have something so serious going on, little things start to seem much less important. By the time it was over, we felt like we'd been together much longer."
Today, Kricke's headaches are gone. The shunt is no longer needed and could be surgically removed. "Growing up with hydrocephalus, I never thought that getting rid of my shunt would ever be a possibility," he said. "To know that it is actually turned off in my brain right now is like a great dream. It's amazing."
Kricke isn't anxious to undergo the operation to remove the shunt anytime soon. "I'm ready to have a little fun," he said. Part of that plan: propose to Shier, which he did at the 2013 Pitchfork Music Festival. Now, he said, "I'll concentrate on getting married."
This story originally ran in the Fall 2013 issue of Imagine, a quarterly magazine published by the University of Chicago Medicine.
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