More Info On Waiting & ER Visit – October 23, 2020

The UW neurosurgeon reviewed the special MRI from last week. Based on the results, we scheduled the consultation to discuss surgery for November 16th. I am on standby to go up earlier if there is a cancellation. Prayers are being answered! I am grateful to finally get in with this specialist neurosurgeon, in Seattle at UW. He is one of the top ten specialist in the world, for this uncommon noncommon condition.  He is the third neurosurgeon I have been referred to, because the first two were not comfortable working with my condition. It is very surreal to shop for your own neurosurgeon for your own potential brain surgery!

Last week, we traveled to Seattle for the CINE MRI. It is used to measure the amount of CSF flowing through my body with each heartbeat. My extra brain tissue can act like a plug in a drain, blocking CSF fluid and causing my symptoms. We do not understand all of the report yet, but we read that there is “diminished CSF flow” around my brain or neck. (Now we know that he never ordered a brain MRI. We don’t understand why he didn’t.)

If I had the surgery, they would remove part of my skull and make more room for the fluid to flow around my extra brain tissue. Sometimes they cauterize the tail of the brain tissue and sometimes they need to remove C1/C2 from the patient’s neck to make additional room.  I will find out what the plan is for me soon.

Over the last several days, I have had increasing abdominal pain and back pain along with neurological symptoms like numbness and sharp pains in my face, arms and legs, head, neck, shoulder, and back pain, slurring my words, brain fog and swelling on the left side of my face. I discuss going to the ER with my mom, but we do not think they can do much to help me, it is very confusing.

After I went to the ER for my abdominal pain and was told it was pancreatitis, I had a follow up with my primary care doctor. He rechecked my bloodwork and ordered an abdominal CT. My bloodwork looked good and the CT should be scheduled soon. The pancreatitis diagnosis is puzzling and my doctor thinks my body may just be misfiring because of the Chiari.

My twin sister came home from the Army on Emergency Leave and my other sister came home from school. It was nice to have all four of us sisters together. We made the most of it!

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