He explained the procedure he wanted to do - a lumbar peritoneal shunt. He showed me a thin tube connected to a small bubble-like port. He explained that he would drill a hole through my fused vertebrae, to access the spinal chord, then insert the tube there, and fix the port just under my skin on my back. He said that because of the way my vertebrae are fused, there was no other way they could see to access my spinal chord. But in placing this shunt, my doctor would have easy access to the port, to draw spinal fluid and inject the Spinraza drug, sort of like an IV. This surgeon has done the LP shunt placement for many patients with similar scoliosis and fusion issues, so he felt confident that he could do this for me, even though I am the first patient at this hospital to receive this drug in this way.
The two things I was most concerned and anxious about actually had nothing to do with the shunt itself. The first thing was that I'd have to lay prone on my stomach for the procedure (which I haven't done in about 20 years) and that I would need to be intubated (which I've not had good experiences with in the past). Of course, the surgery wasn't completely risk-free either, what with risk of infection and loss of spinal fluid.
This all felt a bit like when my friends put me in a backpack to carry me up a fire tower in a park in Indiana. I wasn't a bit afraid, just excited to do something new people I trusted. What I didn't write in that post (for legal and family purposes) is that when we arrived at the fire tower, just before sunset, we found that there was an 8-foot high fence topped with barbed wire that surrounded the tower and was locked. Before we could climb the tower, we would have to figure out a way over that fence. That's when I began to feel fear and dread, and second guess my ambition.
When I first started on this Spinraza journey, the stakes were low, and I felt no fear or worry. All that was required was a few minutes of discomfort, a few times a year. But this surgery felt like that 8-foot fence - it was something I hadn't planned on, and was more risk than I bargained for. But in order to experience the adventure, I'm going to have to experience the risk...