“Are you comfortable, Alyssa?” my surgeon asked while gently leaning over me as I lay on my left side.
My quick-witted response assured her there was nothing comforting about a needle in my spine. But with clenched fists and deep breaths, I was managing. After all, I had been in this position before. The team of doctors and nurses crammed into a tiny procedural room, my mother sat on a stool by my head, and a fluoroscopy machine took pictures of a needle slowly entering my spinal canal, millimeter by millimeter. It was all part of a process I have become all too familiar with: Spinraza (nusinersen) injections.
Jan. 14 marked my 10th injection. When I began my Spinraza journey in December 2016, I was one of the first adults to begin treatment. Aside from recent findings on children and infants, there was no prior experience for me to take notes from, no research on the efficacy of this medication for adults, and no one guiding me on what to expect for the future. This was brand new ground about to be broken, an opportunity I was diving headfirst into with a blindfold on. However, it was one giant leap I was willing to take.
Recapping the last two years and 10 doses would require more than a single column, but throughout this journey, I’ve noted important takeaways people are searching for when it comes to their own Spinraza experiences. Following are some frequently asked questions I’ve received:
What improvements have you noticed?
I wish I could say I’m back to feeding myself and scratching that itch I had on my arm the other day, but I’m not quite there. My improvements have been small to the naked eye but have truly made a world of a difference in my quality of life. Mainly, I’ve noticed changes in my respiratory function. Before starting these treatments, I could barely get out a full sentence before tuckering out. It was incredibly disheartening to my spirit.
After the first four doses, I began to notice minimal changes. I no longer needed to take a deep breath before speaking only three words. I no longer felt physically exhausted after having a conversation, and I no longer shied away from participating in conversations in fear of not being able to keep up. Ten doses in, there is a noticeable difference in my voice (and even my cough).
Do you experience any pain during the procedure?
Despite the local anesthetic I receive, I still experience pain and pressure. At times, it can become unbearable before more of the local anesthetic is injected. Needles have nicked nerves, sparking shocks down my leg, but that has been the extent of my woes to date. The stress can be overwhelming, but when I think back to where my health was two years ago, I am reassured I am doing the right thing.
How do you manage the stress of an upcoming treatment?
I am the biggest bundle of nerves heading into a procedure, and I was sure that would dissipate with time, but it hasn’t. The old adage tells me things get easier over time, but what it doesn’t tell me is the fine, microscopic print underneath that reads: “Except when it comes to lumbar punctures.”
There are risks involved with this procedure, and with every successful treatment I get, my warped way of thinking says I’m “overdue” for something to go wrong. Yes, I am my own worst enemy. However, as I’m transferred onto the operating table and positioned into place, I take a deep breath and remind myself of this:
There has never been a feat too challenging for me to overcome. When I reflect on the challenges I’ve endured, I’m reminded of the strength that has carried me this far — the same strength that will carry me even further. So, if something goes wrong, I do what I’ve always done: fight.
The same goes for you, too. SMA may knock us down, but what matters is the fact that we choose to get back up. Even in our toughest battles, we’ve found the strength to keep moving forward, and it’s time we give ourselves a little more credit for that. When I take the time to look at each injection objectively, I remember this is just another challenge molding me into someone even stronger than before. I can do this, and so can you.
While my advice is simply based on personal experience, everyone is different, and everyone will have varying opinions and experiences. I have great hope that my words will provide some insight into your own journeys. But first and foremost, I’m here to support your own decisions regardless of what they may be.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.