Weathering Chiari

I finally got the date for brain surgery. I will be having brain surgery on January 15 in Colorado.

There are a few issues, one is that scar tissue is growing like a weed and blocking the space where cerebral spinal fluid (CSF) is supposed to flow, around my brain and up and down my spine. There is also a CSF leak at the original surgery site. Both are rare complications, especially 2 1/2 years after surgery. It’s probably been developing over the last year.

This is causing the same symptoms I had before the first surgery, like being very weak and having a lot of pain in my head and neck.

The surgery will be about 4-6 hours. If everything goes the way they expect I will spend 4 days in the hospital, the first 2 will be in the ICU. They are doing things differently this time and having me stay in CO until the 10 day post-op, before they clear me for travel back home. Then I go back to Colorado for a two month follow up.

I like this plan. Last time I had a reaction to a medication that caused my blood pressure to drop really low. They kept me in the ICU for an extra day, so we ended up flying home four days after surgery. That was too hard on me. We had that crazy flight home with horrible turbulence and a diverted landing. I hit my head a few times during the flight and had to spend a few hours in the ER. It was very scary. This new plan, that keeps me close to the Chiari team in CO, feels safer. Especially when the ER doctors in my area are so unfamiliar and uncomfortable with any complications.

Going through brain surgery once was shocking and surreal. Going through it again is different. Me and my family are so much more aware of what it means and we’re stunned. Stunned in the sense that it’s almost hard to move. It takes your breath away and everything feels heavy. It’s like a type of grieving. Getting new MRI scans and all of the consultation process felt more real. Now that I understand I have to do this, another part of my mind keeps asking if there might have been a mistake. We are sad and overwhelmed.

The surgeon said that this is a rare complication to a rare surgery and it is very statistically unlikely for it to happen again. I feel a strange sense of relief in knowing what is happening in my body and causing these symptoms, but I am terrified of having to go through this again. I don’t even know how to put it into words.

I’m thankful for the friends and family that have been such a support on this journey.

I know I’ve only made it this far because God’s been carrying me through the dark places.