Shae's Chari Malformation brain revision surgery
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"I am still processing that I am having brain surgery again. My thoughts and feelings are all over the place. I feel relieved to finally have an answer to why I feel so sick. I am also terrified and feel the dread of having to go through brain surgery again because the surgery and recovery are brutal. One moment I might feel absolutely terrified, angry and resentful, and the next I feel a strange kind of peace. I knew there was something wrong. I couldn’t put it into words, but I knew I didn’t feel right. There’s peace in finally having an answer and a solution. Not the answer I wanted at all, but I’m hopeful that this surgery could help me" - Shae Sobottke
Shae has Chiari Malformation (kee-AH-ree mal-for-MAY-shun) Type I; a condition where brain tissue extends into the spinal canal, causing the skull to press the brain downwards. She underwent brain decompression surgery on March 23, 2021 at the Colorado Chiari Institute in Aurora, CO to remove a portion of her skull and the top arch of C1, adding a patch to the lining around her brain, to make room for her brain and screw a titanium plate onto her skull. Unfortunately, for the last year, Shae has been progressively falling ill without proper explanation as to why. After multiple MRI scans and ongoing, debilitating symptoms following over 2 years of weekly infusions, physical therapy, and cognitive therapy, there have been complications with the initial decompression surgery that require a revision brain decompression surgery which is scheduled for January 15th, 2024. The goal of this 3 part surgery is to remove scar tissue and replace the initial duraplasty, resolving a cerebral spinal fluid stoppage and leak in the dura, and exploratory surgery to identify and prevent additional complications that cannot be found through scans or other external tests.
The first surgery created more space around her brain for cerebrospinal fluid (CSF) to flow. Currently, scar tissue is growing in that space and CSF flow is blocked again. This surgery will restore the flow of CSF through her brain, which will improve debilitating symptoms such as headaches, neck pain, balance issues, fatigue, vision and hearing issues, numbness, short term memory loss, loss of concentration, and neuro-fatigue.
The purpose of going to Colorado for this surgery is that there are not many specialized surgeons for this type of procedure in the Northwest. Shae had consultations with multiple neurosurgeons in the Portland and Seattle area and was told that her case was too complex for any available surgeon in the area. Chiari is a rare condition which requires specialized knowledge; Shae’s complications are very rare amongst the population of those who do have Chiari. Dr. Oro, creator of the Colorado Chiari Institute, is a world renowned expert with decades of experience in this field. The neurosurgeons at this institute have specialized knowledge relevant to Shae’s needs for her condition.
Shae, along with her family, will travel to Colorado from Washington State for a minimum of 2 weeks for her surgery and a 10 day recovery period until she is clear to travel back home. Shae will need to return to Colorado for a 2 month follow-up appointment. Unfortunately, insurance will not completely cover the procedure and medical bills. In addition to bridging the financial gap that health insurance will not cover, other financial hardships include travel expenses, lodging for her and the family, various medical accommodations, sustenance, and additional miscellaneous supplies that will aid her in her recovery. To ensure a full and proper recovery, Shae will also need to attend long term physical and cognitive therapy following this revision surgery.
Organizer and beneficiary
Karol Gagulski
Organizer
Bon Air, VA
Stephanie Sobottke
Beneficiary