These last few months have flown by and we’ve had some exciting things happening!
Back in February, I decided to start the process of starting to receive the newest and ONLY FDA approved treatment for Spinal Muscular Atrophy (SMA) called Spinraza. Spinraza slows the disease’s progression and in many cases, improves the strength of individuals with SMA. It is injected into the fluid surrounding the spinal cord (spinal fluid) through a needle which is inserted into the lower back every 4 months for the rest of the persons life.
There was a lot of “red tape” to get around but the biggest being how would I get the injections because I have rods and a spinal fusion. I had to do a CT scan which showed no opening for a needle to get to my spinal cord. Because there was no access I had to go see a neurosurgeon, he told my parents and I that the best option was to do a Reservoir. A reservoir is placing a catheter in my spine that wraps around my ribcage for port access to receive spinraza. There is not a whole lot of information on doing reservoirs with spinraza especially in South Dakota, I am the first patient in the state who will be doing spinraza through the reservoir.
Tuesday was the day that we had the reservoir placed. I spent Tuesday and Wednesday in the hospital just trying to get my pain managed. Luckily the stay wasn’t too terrible because I had Kalin, my sister Ashley and my parents there to keep me company and to help care for me! I came home on Thursday and am still working on getting my pain under control.
As of right now we are unsure when the injections will start because I need to let my incisions heal. But once we start, I will let you all know! We are excited for the journey ahead and can’t wait to see what Spinraza can do for me!