Too much wonderful brain, for an adorable little skull

Go ahead and have a seat, internet… we need to talk.

We’ve got some big, and not so awesome news. We’ve had a service made available to us as a Firefighter Union. Full body MRI scan, primarily aimed at cancer screening but obviously more comprehensive and not just limited to cancer. This service was offered with a sizable discount for first responders and their family.

Both Amanda and I got them done. I was fortunate in that my results came back with nothing other than benign incidental findings.

However, Amanda’s scan did reveal some concerning news. We discovered that Amanda has a Chiari malformation (not enough room in her adorable skull for her big wonderful brain, so it’s caused her cerebellar tonsils to herniate into her foramen magnum) that’s caused a massive syrinx (cyst in the middle of her spinal cord) that runs from C1 all the way to T5 and is over 1cm in diameter.

Amanda has been dealing with neuropathic symptoms for a LONG time that have likely been related and misdiagnosed as a musculoskeletal issue, allowing this to go on for some time. In the last several months she has begun to experience severe headaches, “zingers” into her right eye and right ear with coughs and sneezes, and persistent throbbing and ear pain. Also, misdiagnosed as possible inner ear stuff, or as being related to musculoskeletal issues.

So now we know… and as much as this is absolutely shitty news, we’re thankful for the scan. We just met with neurosurgery last Thursday and went over everything.

On June 30th, Amanda is going to undergo a very invasive and serious surgery that involves removing a portion of her skull at the base of her neck, as well as some of her C1 vertebrae. In addition they will be cutting open her dura to place a graft. This is all in an effort to create more space for her cerebellum and allow for normal CSF flow and hopefully allow the syrinx to reduce on its own.

I’m sure y’all can imagine… We’re anxious and really fucking scared. But we’re also trying to focus on the things we can control and not rot ourselves by thinking of all the terrible what-ifs.

We’ve been met with so much kindness and offers for help. Our family as well as our fire department family has rallied hard around us.

Neither Amanda, or myself have been good at asking for help… but with the outpouring of support we’ve had a meal train page set up, and I’ve created this gofundme… Neither are things we’ve EVER thought we would find ourselves doing. Unfortunately, my ability to keep up on OT and keep classes on the books for my company is impacted. But being HERE at home, is where I NEED to be. All of this support really stands to lighten the immense pressure of just our everyday living, extra childcare, and the looming medical expenses beyond our insurance coverage.

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