The “urgent” referral to the neurosurgeon Chiari specialist in Seattle, sat on the schedulers desk here for three weeks. Our insurance doesn’t require referrals, so they didn’t send the referral out, not realizing the neurosurgeon requires a referral. They also didn’t contact me directly. It was finally sent out Wednesday afternoon. Seattle asks for five days to process, after they get it.
I called them Friday anyway. They said they had it, but scheduling was on hold because they needed more details. They are requesting my images and more records. We’re faxing more records up tomorrow. I reviewed my back/ head MRIs and sinus CT records from Vancouver Clinic from 8/2017. The radiologist noted on my back MRI that he suspected development of Syringomyelia (CSF filled cavities (called syrinx) in my spine) He noted they were unusual for my age and suggested follow up questions. Neither my primary (then) nor my neurologist (then) mentioned that to me.
There were a few other clues, but that was the big one. Chiari Malformations and Syringomyelia are both incurable conditions that go hand in hand. The syrinx causes many neurological symptoms. They can’t be removed, but after decompression surgery most may shrink by 80%, causing a big improvement in symptoms. We learned this by watching videos on YouTube by the neurosurgeon in Seattle. That is how I recognized the word Syringomyelia in the report. I formally withdrew from school for this semester. Great Northern University, my friends and church community in Spokane have been a wonderful support. It’s important that I’m home right now, but I miss my life there. Our prayer request now is to get in with a knowledgeable neurosurgeon, either in Seattle or somewhere else. I am feeling overwhelmed and some of my symptoms are escalating. For example, Friday night three of my fingers on my left hand went numb and I couldn’t feel them at all.
Please pray for peace and comfort for me as I journey through this valley.
Weathering Chiari 