It’s been a long few days. We were supposed to fly out yesterday, 8/22/25, to head to CO and I was supposed to have surgery on Monday, 8/25/25. However, the Upright MRI that we drove to San Jose for came back with some new findings that have changed and delayed the surgery. We were able to change all of our flights and are shifting all of our other arrangements.
The Upright MRI shows that my upper cervical neck is instable and C2 is compressed, also when my skull and neck meet (CCJ-cranial cervical junction) is instable too. The surgeon read the scans and says my neck needs to be fused for stability.
This all goes back to my first surgery and how under researched Chiari Malformation is and all the commodities that come with it and how they play into each other. My first surgery was in March of 2021, they removed C1 to create additional space (that was needed), but didn’t fuse it. Now, because of new research done in the last two years and released last month, we know I have hEDS and the surgery should’ve been done differently. They should’ve fused my neck the first time.
The instability in my neck is what led to Dysautonomia (POTS and all of my other automatic systems going offline). Post surgery, with a lot of physical therapy there is hope we can retrain my system to work out of much of that.
The neck fusion just added on a whole lot more recovery and pain in this next surgery. But, hopefully now with the correct diagnosis and the updated research and studies I have a solid chance of recovery after this surgery.
My neck is definitely getting worse. There’s now a spot on my upper neck near my scar where there a fluid pocket. It’s very tender. If I’m upright for a while it grows and it gets smaller if I am laying flat. I’m supposed to be resting and staying as flat as I can from now until the 8th now.
My family and I appreciate all of your prayers and support. 💜
Thank you,
Shae
Weathering Chiari 