When her daughter was diagnosed with a Chiari one malformation, a potentially serious brain condition, Cassie Wilson and her family wanted to know everything they could about the topic. So, they looked it up online.
The information they found helped explain a lot of the seemingly random and unrelated symptoms Cassie’s daughter, Cadance, had been experiencing most of her life. It also set them on edge.
“We had never heard of it before, but once we searched it online it all made sense,” Cassie said. “But the internet is not very positive, so it was kind of scary.”
Thankfully, a referral to OSF HealthCare Illinois Neurological Institute (OSF INI) led them to care providers who eased their fears and changed their lives.
A mystery solved
Cadance had shown symptoms her whole life, but they all seemed unrelated to each other. She had sleep apnea and snored. She would sometimes choke on food. Painful scoliosis started when she was about 10. A grating cough and migraines started around age 12. During eighth grade volleyball, she kept having strange sensations in her arms and hands. She would play through it until her coach forced her to sit.
The Wilsons took Cadance to see an orthopedist for the scoliosis. She had an MRI and on May 28, 2017, Cadance’s 14th birthday, the Wilsons received a call telling them the MRI had revealed a Chiari one malformation and referred them to the OSF INI. That’s when the family turned to the internet for answers that only served to scare them more.
A Chiari malformation is when part of the brain bulges through the opening at the base of the skull, putting pressure on part of the brain and the spinal cord. Common symptoms include severe headaches, trouble swallowing, sleep apnea, weakness, balance issues and scoliosis.
On June 16, the Wilsons had an appointment with Julie Deibel, CNP, a pediatric neurosurgery specialist at OSF INI, that really turned things around for the worried family. Julie provided recommendations for trustworthy, helpful online informational resources. She also talked to them about the option of having neurosurgeon Tony Avellino, MD, MBA – the CEO of OSF INI – perform a surgical procedure to fix the issue.
“We went in there having read terrible things on the internet, so Julie made recommendations for actually helpful sites to visit for information,” Cassie said. “It turns out, a Chiari one malformation is not as rare as people think. She talked to us like a mom would – very matter of fact, but also very thoughtful with her words. My daughter was scared out of her mind. Julie spoke directly to her, making sure the point got across to Cadance. Julie talked at her level, and at one point Cadance looked at Julie and asked, ‘If you had a daughter my age, would you let Dr. Avellino do surgery on her?’ Julie said she absolutely would trust him with her own life and her child’s.
The Wilsons met with Dr. Avellino on July 18. He said Cadance should go through with the surgery. Dr. Avellino performed the 2.5-hour surgical procedure one week later.
“Cadance was all about doing it,” Cassie said. “The way Julie talked to her, she wasn’t scared.”
Better than ever
Months after the surgery, Cadance, according to her mother, has never been better.
She’s still playing volleyball and softball and, according to Cassie, she’s throwing harder than ever. Cadance sleeps better. Her hands and toes are now at 100 percent strength, where before surgery they were functioning at maybe 30 percent strength.
“She’s doing incredible,” Cassie said. “She can do everything better now with no pain. It’s amazing. She’s like a new kid. I don’t think we knew how much pain she was in for so long. She was so used to pain, she didn’t know how bad she had it. It didn’t occur to her before that certain things don’t need to hurt. She went to put a necklace on the other day, and she could never get the clasp by herself before. Between medical science and God there have been so many blessings.”
Cassie and her husband, Sean, were told once that they would never have children, so their daughter is a miracle to them and they’re very protective of her. It made all the difference to them to have somebody like Julie help them out during a time when they were so scared for their daughter.
“We emailed Julie a ton of times, and she would always respond right away or call,” Cassie said. “She didn’t make me feel like a nuisance for asking. I think if I had felt like we were annoying her with all the questions, I would have been more apprehensive, less trusting. You don’t expect to be treated like family when going in for surgery, but we felt like she was our aunt or something.”