When then 11-year-old Tallahassee fifth grader Katie Upton complained of bad headaches after school two to three times a week, her mother Jennifer assumed she wasn’t eating enough, drinking enough water, or that perhaps she had a vision problem.
She scheduled an appointment with a Tallahassee optometrist for an eye exam. “When the doctor dilated Katie’s eyes, he noticed that her optic nerves were enlarged,” said Jennifer. “He said, ‘I would see a pediatric ophthalmologist if it were my daughter.’” After an exam, a local ophthalmologist referred Katie to a neurologist in Tallahassee, who ordered an MRI.
“When we walked in, the MRI image was on this huge screen in his office and that’s when panic set in,” remembered Jennifer. “It looked like the entire left side of her brain was missing and that her brain was off center, pushed over to the right. He told us it was an arachnoid cyst and referred us to an ophthalmologic neurologist, who was so comforting and helpful. After a series of eye tests, he was adamant that we had to get the pressure off of her eyes or it would cause blindness.”
She continued, “He referred us to a neurosurgeon in Tallahassee, who wanted to put in a permanent shunt in her brain to drain fluid into her abdomen. My husband, Steve, researched other treatment options, referred to as fenestration.”
Jennifer’s insurance plan, Capital Health, told her that not only could she get a second opinion, but that they absolutely recommended it. “The nurse with Capital Health Plan researched the condition and the fenestration method, a surgical option that allows the neurosurgeon to relieve the pressure in the brain without a shunt, and she found Dr. [Philipp] Aldana. Not only that, but on the day the nurse called to recommend Dr. Aldana, my gynecologist said, ‘You need to go to Wolfson’ and my mother’s doctor said the same thing!’”
University of Florida College of Medicine—Jacksonville pediatric neurosurgeon Philipp Aldana, MD, medical director of the Lucy Gooding Children’s Neurosurgery Center at Wolfson Children’s Hospital, saw Katie for the first time in May 2012. Jennifer recalled, “He said that a shunt was one option, but he didn’t recommend it. He talked to us about two types of fenestration, one with an endoscope and one as an open procedure. He said that because of the cyst’s location in the brain, he suggested doing the open procedure.”
Dr. Aldana told the family that if the pressure of the cyst wasn’t relieved, it could cause permanent damage to the nerves of her eyes and to her brain.
Katie’s surgery was scheduled for June 7 at Wolfson Children’s Hospital. “It is a very delicate surgery because the inner walls of the cyst are near the brain stem and carotid artery,” explained Dr. Aldana. “I made an incision in her skull the size of a silver dollar to access the cyst, and made ‘holes’ in the inner walls of the cyst to drain the fluid and relieve the pressure on the brain. The fluid in the cyst is what causes the pressure, and although Katie will always have the cyst in her brain, this is a permanent solution.”
Jennifer said, “When Dr. Aldana came out of surgery, he told us that he had opened the cyst up and that he was able to see the spinal fluid traveling into the normal path, just like it was supposed to, which was very reassuring.”
Jennifer said they had the best experience at Wolfson Children’s Hospital during Katie’s stay, which included a three-day stay in the Pediatric Intensive Care Unit and on the neuroscience unit. “Katie was frightened, of course, and they let me hold her hand right up until surgery,” she said. “The staff treated Katie like an adult, telling her everything they were going to do ahead of time, while being very comforting to her. The staff was amazing and so gentle with Katie. And Dr. Aldana was so wonderful with Katie.”
Katie no longer has chronic headaches and continues to be an excellent student, dancer and actress in a local theater company in Tallahassee.
Katie said, "I really like Dr. Aldana and the way he treated me. I felt like he really cared about me. I was touched that he cared enough not to take a ton of my hair and made sure I could cover up where I was shaved and my scar.”
In gratitude to Dr. Aldana and Wolfson Children’s Hospital, Katie’s grandmother, with the help of Jennifer, Katie and her sister Madison, have created a large wall quilt that will be presented to Dr. Aldana on the afternoon of August 13 and displayed in the Lucy Gooding Children’s Neurosurgery Center affiliated with Wolfson Children’s Hospital and the University of Florida College of Medicine--Jacksonville.
“Katie picked out a pattern of three bears on a picnic with purple mountains in the background,” said Jennifer. “Katie laid out the pattern pieces and selected the fabric for each piece. On Mother’s Day, we laid out the quilt so my mother could start putting it together. It’s finally finished!”