My First Shot (Almost)

Today I was scheduled to get my first Spinraza treatment. I’ve been told that I am the first Medicare recipient to get treated. Because of a weird Medicare regulation, I couldn’t get treated in the new building at Stanford. Something about a requirement that wouldn’t allow me to be treated more than 200 or 300 yards from the hospital. So Connie needed to schedule a room in the old building, which wasn’t familiar or really set up properly for the lumbar puncture. I was put on a small examination table that was fairly uncomfortable. Connie really wanted to do the puncture with me sitting up, but I haven’t been able to set up on my own since I was about 20. They had people to help but it was ultimately decided to do the procedure with me laying on my side.

They had sonar imaging system to locate the space in my vertebrae, but the  machine couldn’t seem to help visualize my spine properly. They tried using a few places that looked promising from the image, but none of the possible sites worked. Connie attempted several more times, but never succeeded. They called in a neurologist who had assisted Connie with other SMA folk. The neurologist was no more successful. After 3 1/2 hours of trying to get a lumbar puncture, I couldn’t take the discomfort of being in the position I needed to be in for them to do their work. I’m very disappointed, and still feel like if they had tried one more time, it would’ve worked. Of course, I felt that way at after every attempt. I’m pretty exhausted, disappointed, frustrated and angry.

It’s important to note that the staff were just great, every one of them.
Apparently my spine is just a little more tricky, plus my vertebrae are
fairly compressed. Next step is radiology, to assist Connie in getting the
Spinraza into me. It’s problematic to use radiology with Medicare, but
Connie said, “There are at least two doses of Spinraza with your name on
them.” She’s determined to find a way. All the staff was clearly unhappy
that they couldn’t help me today, but they assured me that I had done
everything that could have been expected of me. So, the schedule they gave
me is canceled for now. Connie seemed to think there might be some
regulation changes in July that would make it easier for me to be treated in
the new building that they are used to doing these treatments in. I’ll need
to wait a little longer.

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