Surgery Update: A Very Unexpected Week

If you’ve been following along, you know that the past two weeks have been  a wild ride.

Originally, my tethered cord surgery was scheduled for July 14. After my Fourth of July emergency room visit ,  my primary care doctor and my ME/CFS/Long COVID/EDS dr decided it would be safest to ask for a delay while we sorted out several new medical concerns.

Then everything changed.

Last Friday, my neurosurgeon, Dr. Paolo Bolognese, called me personally—out of the blue. After reviewing everything, he felt that my worsening mobility and neurological symptoms (gas station smell, weird numb face)were most likely progression of my tethered cord rather than the other issues we had been investigating. His advice was clear: don’t wait.

So Rose and I completely changed our plans, packed in a hurry, and flew to New York on a red-eye so we could move forward with surgery.

Yesterday brought another surprise.

We learned that my insurance appeared to be inactive because of a transition related to my long-term disability status. I spent the entire day on the phone trying to untangle it. By the end of the day, although everyone believed the problem would ultimately be fixed, there was still enough uncertainty that my surgical coordinator and I agreed it would be too risky to proceed. With a surgery of this complexity, I simply couldn’t gamble on the possibility of being left responsible for a bill as high as up to 200,000.  

So we made the difficult decision to reschedule.

About thirty minutes later—because if course it did—the insurance approval arrived in my inbox.

At that point, though, the decision had already been made, and changing everything back again wasn’t realistic.

So now my surgery is scheduled for July 21.

I’m choosing to see this unexpected week as a gift. Instead of rushing straight into the operating room, Rose and I have a little time together in New York. We’ll still be attending appointments, preparing for surgery, and pacing carefully, but we also get the chance to visit a few favorite places, celebrate her birthday a little longer, and simply enjoy being together before the next chapter begins.

The surgery is still happening. The underlying neurological problems are still there. But for now, I’m taking this extra week as an unexpected blessing rather than another setback.

Thank you to everyone who has checked in, prayed, donated, shared encouragement, or offered practical help. Your support has carried us through every twist and turn, and it means more than I can say. And we still
 need you. Thank you. 

Next stop: July 21.