Hello, my name is Shae Sobottke
I am 22 years old and live in the Pacific Northwest. I am a follower of Christ who loves music and reading. I was study for a degree in Biblical and Theological Studies at Great Northern University, in Spokane, WA, before I had to withdraw and move back home due to my health. I am planning on returning as soon as I am able to.
For about 5-6 years now, I’ve been struggling with all kinds of random symptoms that the multiple doctors and specialist I saw couldn’t diagnose. They could tell something was going on with my nervous system. I have no reflexes and a nerve conductivity test showed dull senses on the left side of my body. I was told it was anxiety and depression and to deal with that. I was treated as attention seeking.
While I was attending a university in Spokane, about seven hours from home, I ended up in the ER for a possible stroke. I will forever remember sitting in a hospital, in a still unfamiliar city, by myself with the ER doctor telling me that he was ordering an MRI because he wanted to look for a stroke or MS. The MRI came back clear and I was treated for a migraine that mimicked a stroke. I was given fluid and medication and sent home to rest. The doctor told me to come back to the ER if my symptoms progressed.
Another ER trip and about four doctor appointments later an ENT told me that I had “cerebellar tonsillar ectopia extending 5mm below the foramen magnum.” She said I needed go back to my hometown and discuss it with my primary doctor and gave me very little information, so I had absolutely no idea what that meant. I remember sitting in the passenger seat next to my mom, in the parking lot at ENT office, googling that phrase. I read things like, “Chiari Malformation” and “rare brain condition”. I just cried.
I was in disbelief. I thought for sure this was one of those examples of getting medical advice from the web, a worst case scenario. Something far away. That night though, as I read every article and watched every YouTube video I could find, everything seemed to be clicking in place. It was all my symptoms and all the things people were diagnosed with, were what some of my doctors had thought. I so clearly remember that sinking feeling and the realization that my life wasn’t going to be the same.
Chiari (pronounced key-AR-ee) malformation is a condition in which the lower part of the brain, called the cerebellar tonsil, herniates down through the skull and into the spinal canal. The herniated tissue blocks the normal flow of cerebrospinal fluid (CSF). Instead of moving in an easy, pulsating movement through this opening, the fluid begins to force its way through – like a water hammer – pushing the tonsils down even farther. The blockage can cause a buildup of fluid in the spinal cord (syringomyelia) or in the brain (hydrocephalus).
This is a condition that was once considered rare, but now considered to be “uncommon.” So, not that many doctors really know that much about it. This blog is a place for me to share my journey and raise awareness for Chiari Malformation. I want to create a place for discussion and a place to see the human side and cost of Chiari Malformation.
“God is our refuge and our strength, an ever-present help in times of trouble. Therefore, we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging.” ~ Psalm 46: 1-3