The UW neurosurgeon reviewed the special MRI today, from last week. Based on the results, he scheduled the consultation to discuss surgery for Nov 16th. We are on standby to go up earlier if there is a cancellation. Prayers are being answered!

I am grateful to finally get in with this specialized neurosurgeon, . We are waiting for a call, before then, to share the findings of the MRI with us. Over the last few days, I have had increasing abdominal and back pain along with neurological symptoms like numbness in my face and arms, head, neck, shoulder and back pain, slurring words, brain fog, and swelling on the left side of my face. My mom and I discuss going to the ER often, but we don’t think they can do much to help me, it’s very confusing.

Last night seemed different, so my mom took me to the ER for abdominal pain and they diagnosed me with pancreatitis. I don’t drink, smoke or use drugs, so it doesn’t make sense. There could be other causes of pancreatitis, but the doctors are puzzled. I will be rechecked on Wednesday. I feel so sick and very stressed.

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.

Last August, I was diagnosed with Chiari Malformation, that means that my brain dropped in the back herniated into my spinal canal and it is causing many neurological problems.

We now know the full picture of what is happening in my brain. Cerebral spinal fluid is supposed to flow freely all around your brain and into your spinal canal. My CSF flow is completely blocked on the right side. My skull is also a little too small for my brain, so my skull is squishing my brain and my brain stem is very compressed.

This is adapted from one of my mom’s Facebook posts from Fall 2020:

I am being referred to a neurosurgeon in Seattle, who specializes in Chiari Malformation, to come up with a treatment plan. My doctor here thinks I will need a decompression surgery, unless they can find another cause for my symptoms. That means they will do brain surgery to remove a portion of my skull, in the back of my head, to make more room for the extra brain tissue. The neurosurgeon I saw on Monday is concerned that I may also have a carotid artery dissection that is leaking and may be causing my stroke like symptoms.

He ordered MRI/MRAs of my neck and brain. I am still waiting to schedule for those. Right now, my five week, high level migraine and vomiting has passed. My neck and the back of my head are stiff and sore with pressure and my face and neck are numb. My doctor said that won’t go away until the potential surgery. I feel a deep tiredness and it is often hard to put my thoughts together. I am home from school, resting a lot and trying to process all of this.

Thank you all so much for your love and prayers!