Braving Surgery: My Journey with SMA and Kidney Stones

Living with spinal muscular atrophy (SMA) Type 2 brings a unique set of challenges into my everyday life, but nothing has tested me quite like my current battle with kidney stones. As a 29-year-old woman managing both SMA and recurring kidney stones, I’m reminded once again of how much my body demands my attention and resilience.

This journey began last October when I felt a familiar pain that took me back to my previous experiences with kidney stones. My suspicion about their return grew stronger with each wave of discomfort. I’d had kidney stones removed years ago. That was an ordeal that left me both physically drained and, unexpectedly, emotionally scarred. So, realizing that these stones might be back filled me with dread.

Discovering the cause of my pain

A few weeks later, my suspicions were confirmed. My urologist found a 10mm staghorn stone lodged in my right kidney. A staghorn kidney stone is named for its antler-like shape and is notorious for being both large and complicated to treat.

As if the stone’s size and shape weren’t intimidating enough, it has been causing recurring urinary tract infections (UTIs), likely due to the bacteria it harbors. Initially, my doctor tried a conservative approach: antibiotics to clear the infection and hopefully buy us time to avoid surgery. Given my SMA, surgery comes with significant risks, so the goal was to avoid it if possible.

However, after finishing this last round of antibiotics, the infection remains, and the pain persists. I realize now that surgery is unavoidable, and I feel an all-too-familiar anxiety rising within me. My mind keeps returning to my last experience with kidney stone removal and the complications that came with it.

My last experience with a kidney stone

Around five years ago, I underwent anesthesia for a similar kidney stone procedure, and that experience has haunted me ever since. When I awoke in the recovery room, I felt trapped within my own body. The anesthesia and muscle relaxants left me so weak that I could barely move. My body wouldn’t respond, my chest felt heavy, and I could only manage to flick my eyes back and forth in desperation.

In that moment, I was isolated, relying solely on the medical staff around me who couldn’t fully understand the nuances of my SMA or the specific needs my body has because of it.

As I lay there, surrounded by doctors and nurses who initially didn’t realize anything was wrong, panic surged through me. Finally, a nurse caught the movement in my eyes and my quiet moans. I struggled to form the words, “can’t move my arms and can’t breathe,” each word a lifeline, pulling me closer to someone’s understanding.

Realizing my reaction to the muscle relaxants, the anesthesiologist quickly administered a reversal agent, which slowly allowed me to regain strength and breath. While my body recovered, the emotional trauma embedded itself deeply within me.

A lingering fear of anesthesia

That terrifying experience left me with a lingering fear of anesthesia and an acute awareness of how vulnerable I am in medical situations. Facing another surgery now feels like reliving a nightmare. Knowing how rare SMA is and how few medical professionals are familiar with its intricacies only heightens my anxiety. With SMA, complications can arise simply because my body doesn’t respond like others do, and being treated with a “standard” approach can lead to serious issues.

Remembering the concerned look on the anesthesiologist’s face as he spoke to my parents after that surgery brings a chill. He wasn’t just reporting a complication; he was facing a situation he hadn’t fully anticipated—a stark reminder that even medical professionals aren’t always prepared for the unique challenges SMA brings.

Facing my fear of surgery

Now, with surgery imminent, I’m trying to face my fear and take control where I can. This time, I want a different experience, one where I feel confident in the plan and understood by the team caring for me. I’m diving into research on SMA and anesthesia, talking to specialists, and crafting a specific care plan that includes avoiding muscle relaxants or finding alternative anesthesia options. Advocating for myself has become a priority because I’ve learned that in these situations, self-advocacy can literally mean the difference between life and death.

It’s daunting, and I can’t pretend I’m not terrified. But being informed, speaking up, and involving my family and specialists in every decision gives me a sense of agency in a process that often feels out of my hands. Going into this surgery, I carry with me the strength of having survived a frightening experience and the determination to avoid a repeat. I want others who share similar challenges to know that it’s okay to feel scared, to ask questions, and to demand the care we need.

Facing surgery for kidney stones while living with SMA is a journey filled with fear, but it’s also one that reminds me of my resilience. And when I emerge from this, I hope to be stronger, with another hard-earned lesson in advocating for my health.