2024
We would like to cover January 15, 2024 in prayer for Shae as she goes in for her 2nd brain surgery. Please join us in praying for Shae: every part of her procedure and recovery, the doctors and nurses, hospital staff, hospital, operating room, recovery room, and Shae’s family. Let us pray that in all things God’s will be done.
Shae had brain decompression surgery in March 2021 for a rare condition called Chiari Malformation (kee-AH-ree mal-for-MAY-shun) Type I. Since then, Shae has experienced complications, including a leak and scar tissue that is growing like a weed at the site of the previous surgery.
Last year Shae had over 135 medical appointments which does not include the ER and urgent care visits. There have also been dozens of trips to the pharmacy and calls to doctors and insurance, not to mention all of the scheduling. It’s overwhelming!
Shae is going to a specialist in Colorado who is familiar with this rare complication. Shae hasn’t been able to work or return to school and needs support for travel to Denver and upcoming medical bills.
Shae’s 2nd surgery is scheduled for January 15th, 2024. The goal of this surgery is to remove the scar tissue and replace the initial duraplasty (the outer covering of the brain). The hope is to stop the cerebral spinal fluid leak. In addition, exploratory surgery will look for additional complications. After surgery Shae will need to stay in Colorado for ten days. At her ten-day follow-up exam, the doctors will assess her recovery and remove the staples before releasing her for travel home. Shae will also need to go back to Colorado for a follow up in two months.
Please consider helping Shae and her family financially as they navigate this extraordinary medical journey.
https://www.gofundme.com/f/support-shaes-brain-surgery-and-recovery
2021
“The neurosurgeon said he thinks with surgery he can improve my quality of life by 87%. He went over all of my scans with me and explained what is going on in my brain. The lower part of my brain has dropped and is compressing my brainstem and the CSF fluid flow is completely blocked on one side of my brain and diminished on the other. I’m going to have the brain decompression surgery on March 23rd in Colorado! I am relieved, excited, and terrified at the same time. I am thankful for God for directing me to the right neurosurgeon and am grateful for all the family and friends who have prayed for me and supported me all this way” – Shae Sobottke
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.
Weathering Chiari 