Hi, everyone! For the past few weeks, I've been receiving so many awesome questions about Spinraza and my experience with it. So, I thought I'd take this opportunity to write a blog about your frequently asked questions in hopes of providing more insight into this treatment.
Another day, another spinal tap. I think that's how the saying goes, right? The ride to Boston Children's was anything but peaceful yesterday. Bumper-to-bumper traffic on I-95 hit and, suddenly, I was most definitely going to be absurdly late to my third spinal tap procedure. Although only an hour away, smooth cruising en route to the city has never been a guarantee. Throw in a Monday morning and rush hour commute, my parents and I had basically set ourselves up for failure.
I knew going into this treatment opportunity that I would have to make some sacrifices. Not the kind where you feel bitter and resentment towards whatever it is you made that sacrifice for. No, not that kind at all. It was the kind of thing where you understood the fine print of said opportunity and were still willing to sacrifice just about anything anyway. But, I digress.
"I'm so sorry, Alyssa," my surgeon said for the umpteenth time. "I'm so sorry that was more difficult than the last time." Although my first procedure went incredibly well, that didn't guarantee the second time around would be the same. Unfortunately, I learned this the hard way, and that there were definitely some pros and cons to a lumbar puncture procedure when you have a ridiculously curved and twisted spine like mine.
"Okay, I'd like to call for a time-out," the attending announced in the operating room. "The patient's name is Alyssa Silva..." Okay, breathe, Alyssa. "...she is here for a lumbar puncture..." Deep breaths. "...we have consent..." Inhale. "...the injection is here..." Exhale. "...okay, then. I think we're ready to start." You can absolutely do this.
Sunday, December 4th. 5:47pm. It was another lazy Sunday evening at the Silva's when my mother's cell phone rang. On the other end of the call was my neurologist.