Our daughter, Paisley Willow, was diagnosed with Chiari Malformation at the age of 10 months after an accidently fall where she suffered a skull fracture. For the next 8 months, we felt it was simply a diagnoses and hoped she would be one of the lucky ones that wouldn’t be impacted by it. Within months, symptoms began presenting themselves but we remained in denial. We blamed it on her chronic ear infections, teething or just becoming a picky eater. At 22 months, Paisley had a swallow study done which showed her 12th cranial nerve was being restricted. She was diagnosed with Hypoglossal Nerve Disorder. Within 2 weeks, Paisley had her 1st Brain Decompression surgery on June 13th, 2017. She spent 6 days in the hospital only to be readmitted on the 22nd with Chemical(Aseptic) Meningitis. Recovery was harder than we had ever imagined.
Paisley began feeding therapy shortly after her 1st surgery to regain skills and to work on many fears she had developed with feeding. Something still didn’t seem right even though her 3 month post op MRI looked good. We became concerned with her breathing therefore we had a sleep study done. Paisley was then diagnosed with Obstructive Sleep Apnea in January 2018. Over the next few months, she began getting worse again. Her behaviors before her 1st surgery were all coming back. She was holding her head, her neck, very irritable, withdrawing and starting to gag on her food. On April 16th she had a CTL Spine MRI which gave us the worst news… Paisley had developed 3 syrinxes in her spine. She now has Syringomyelia. On April 26th, 2018, Paisley had her 2nd Brain Decompression Surgery. It was discovered that scar tissue had formed a blockage. This recovery was even harder than the first. She developed Chemical Meningitis again and this time it took 3 months to fight that beast. Meanwhile, we were so worried about what the Meningitis was causing to her healing process.
Again, Paisley never seemed to get much relief. Her post op MRI in August showed the syrinxes were still present. We were becoming concerned with her left leg. It appeared to be weak when she would bear weight on it. Her right eye had developed a “wink” or squint before the 2nd surgery and it had only gotten worse. Paisley had another MRI in October but this time a CTL Spine. This showed, the syrinxes appeared to have slightly increased. There were many different discussions and approaches we attempted (We discussed a low level of hydrocephalus occurring and she began a medication to decrease her CSF production). We discussed a VP (Brain) Shunt or a Syrinx Shunt. We have taken the time to do as much research as we can. A major problem with Chiari is the lack of research available. The lack of funding towards Chiari limits the amount of research. We felt at a loss as parents and only wanted to help our daughter. We reached out to a Chiari specialist who consulted with Paisley’s Neurosurgeon and it was decided that Paisley needs her 3rd Brain Decompression surgery. We are heart broken but know Paisley needs some much needed relief so she can live life like a typical 3 year old. Her 3rd surgery will be on February 5th, 2019.
We feel blessed to have a wonderful medical team taking care of Paisley. We feel fortunate.
After Paisley’s 1st surgery, we decided to remain positive and turn our journey into a mission; to help make change. So much more research is needed. More funding is needed. This is how Cans for Chiari was born.