Hello, my name is Shae Sobottke
I am 24 years old and live in the Pacific Northwest. I am a follower of Christ who loves music and reading. I was studying 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. At first I thought I would be able to go back to school reasonably quickly. But, I quickly leaned that would would not be the case.
For about 7-8 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, but just could not identify exactly what is was. I have no reflexes and a nerve conductivity test showed dull senses on the left side of my body, and bloodwork showed somethings were elevated, but not enough to be a cause of concern. I was told it was anxiety and depression and to deal with that, by going on meds. I said that I didn’t believe that I was depressed. I was treated as attention seeking. I was around 16 at the time and had my mom with me. The neurologist turned to my mom and said that she needed to make me admit that I had anxiety and that there was nothing she could do. She stood up and opened the door with a gesture for us to leave. I stopped seeking out doctors after that.
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 that ENT office, googling that phrase. I read things like, “Chiari Malformation” and “rare brain condition with no cure”. 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 other 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.
Now, almost three year later, my symptoms are back to how they were pre-surgery, plus a ton of new ones that I did not have before. It was a battle to find a good care team. My neurologist ordered an MRI of my neck and brain to make sure that everything was still healing as it should be.
The MRI came back with a collection of fluid, my neurologist referred me back to the neurosurgeon.
In October 2023, I woke up one morning because my nausea and head pain woke me up from sleep. My blankets and clothes hurt my skin and my brain felt like it was spasming. It quickly progressed to me violently throwing up nonstop. We called my primary care, neurologist and neurosurgeon and finally ended up at the ER.
The ER doctor had never heard of a CINE MRI, a special MRI that shows the movement of Cerebral Spinal Fluid (CSF) in the brain, (it looks like a short MRI video) but he was willing to order it. That CINE MRI showed Pseudomeningocele, an abnormal collection of CSF caused by a defect in the dura, the thick lining around your brain. The scan also showed the CSF flow is diminished, I think the fluid collection is blocking part of the flow and that is what is making me feel so sick. the ER doctor consulted with the hospital’s neurosurgery team and they determined my case was too complex for them to handle. They said it is a serious issue, but not acute and that they just weren’t equipped to treat me. The said if I got sick again to go to the ER at UW in Seattle or OHSU in Portland, but not to go back there. The ER doctor was very apologetic. I just went home that night.
I met with the neurosurgeon in Colorado virtually and he told me he saw the fluid in the first scan but not the second one that was done. He believes the reason the fluid collection is not showing is because the leak is active. The CSF is flowing in and out of the pocket. It’s basically a spinal leak that doesn’t leak through the skin. There also is an effacement (pressing on nerves) that is probably from adhesions in the dura (the thick lining around our brains), which could be the cause of the blockage that is causing the decrease of CSF flow.
The surgery will be to drain the fluid and repair the dura. There is also an element of exploratory surgery to look for any adhesions, and anything else that could be causing problems.
I’m using a cane now because I have developed some mobility and balance issues. I’m losing the fine motor skills in my hands too and barely able to write with a pen. My ability to do math and keep track of time is gone right now, adding 2+5 is beyond me and time is confusing. There is short term memory loss also. The headaches are nonstop because of the fluid blockage in my brain. Hopefully, this surgery will heal and restore those things or at least stop the progression and will greatly improve my quality of life.
I stated this blog to raise awareness for this often misunderstood, complex, neurological disorder and to connect with others who may be on on a similar journey.
God Bless,
Shae
“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
Weathering Chiari 