Embracing the unexpected after my 30th Spinraza injection
This column describes the author’s own experience with a Spinraza (nusinersen) injection. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
I thought it’d be different. I thought I’d be celebrating my 30th Spinraza injection with excitement and awe at the journey I’ve been on for the past seven years. But living with spinal muscular atrophy (SMA), I’ve also learned to expect the unexpected. My body calls the shots, so I’m always prepared for any challenges that come my way.
However, I recently entered new territory with health issues that took me by surprise.
Spinraza is a disease-modifying therapy for SMA that’s administered through a procedure that includes a lumbar puncture. While the process is straightforward, my scoliosis makes it complicated. More radiology equipment needs to be used. Positioning my body is more difficult, and I experience more pain. Most recently, a new challenge made matters worse: I have vestibular migraines.
These migraines are essentially severe vertigo that’s not easily treated. They are exacerbated during allergy season, and this year has been more debilitating than ever. Since March, I’ve been feeling as though I’m sailing on a life raft in the open ocean during the middle of a hurricane while intoxicated. Some days are calmer than others, but after my lumbar puncture, my symptoms took a turn for the worse.
After my injection
Following what was supposed to be an exciting Spinraza injection, I developed regular migraines on top of my vertigo. Though the risks were low, I faced the possibility of having a spinal headache, which occurs when spinal fluid leaks. So I brushed my symptoms aside. I assumed I was feeling a post-lumbar puncture headache that would heal in a few days.
However, as the days passed, my symptoms became more intense. I was growing more agitated and helpless. That’s when I knew something wasn’t right.
The following weeks were spent consulting doctors, getting ample rest, and ultimately seeking treatment. My incredible team of doctors understood all of my medical complexities and meticulously developed a plan they felt would best alleviate my new symptoms. After all, they’ve traveled into the unknown with me many times before.
I was prescribed a day at the infusion center to receive four medications intravenously that would hopefully kick-start my migraine recovery, then a weeklong pack of steroids to take at home.
As I’m writing this column, I’m still in the midst of treatment. I’m tired and weak, but fortunately, I’ve had only minor side effects.
Even so, many questions remain unanswered about how I got here in the first place. Were my symptoms induced by allergies? Did my lumbar puncture cause the migraines? Though I’m beginning to feel better, will this problem happen again?
This long battle has made me realize that no matter how equipped I feel to face the unknown, sometimes life happens. Sometimes I’m thrust into situations that all the preparedness in the world couldn’t prepare me for. In those times, I must not rely on the darkness of the unknown but my inner light to guide me. In all situations, I’ve always found a way.
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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