Shae has Chiari (Key-R-E) Malformation Type I, a rare complex deformity in which her brain is compressed in her skull causing brain tissue to have herniated into the upper portion of her spinal canal. That has caused serious pain and neurological symptoms. She will undergo brain decompression surgery on March 23, 2021 at the Colorado Chiari Institute in Aurora, Co. The goal of the surgery is to relieve the crowding in her brain by permanently removing a portion of her skull and the top arch of C1 to make more room for her brain and they will screw a titanium plate onto her skull. Additionally, the surgery will relieve her headaches and may relieve most of her neurological symptoms [hearing loss, numbness, shocks, burning, brain fog, vertigo, spotty vision, mimicking strokes and insomnia] and keep them from progressing.
Over the last five years, she has seen multiple doctors, ENTs, neurologists, neurosurgeons, physical therapists, chiropractors, and other specialists, but Chiari Malformation is not that well known, so that’s why it took five years for her to be diagnosed. She has had a number of trips to the ER in which doctors believed she was having a stroke. Tests had proved she was not having a stroke. It is believed the Chiari mimicked stroke symptoms.
There are many theories but not many answers. They think it’s a birth defect of the lower part of the skull. The extra brain tissue growing into the spinal canal can be triggered by a trauma, but they aren’t sure. There is a lot that still isn’t known about Chiari.
Due to increased neurological pain, brain fog, headaches, insomnia, trips to the emergency room, and numerous doctor visits and referrals; Shae formally withdrew from Great Northern University. Because of the lack of medical knowledge of Chiari Malformation it has been difficult to find neurosurgeons skilled and comfortable to treat Shae. Fortunately, after months of prayer and waiting Shae was directed to a neurosurgeon in CO at the Colorado Chiari Institute at the Aurora Medical Center, who will operate on Shae. The neurosurgeon said that they do a ton of these surgeries, so the staff is all familiar with it.
Shae and family will travel to Colorado from Washington State for a minimum of a week for surgery. Shae will have a follow up appointment 2 months post-surgery. Regretfully, the insurance will not cover 100% of the procedure and medical bills. Additional financial hardships include travel expenses, hotel expenses, medical accommodations, COVID restrictions, sustenance and additional supplies that will aid in her recovery. Oddly enough, Shae will also need specially ordered pillows and button up tops to allow her incisions to properly heal.
In-depth description: The lower part of Shae’s brain dropped and tissue from the cerebellum (called tonsils) is herniating into her spinal canal. The right tonsil is completely blocking her CSF (cerebral spinal fluid) flow from passing down into her spinal canal. The back of her skull was formed a little too small for her brain, this is causing her brain stem to be compressed.