Why I’m seeking spinal fusion surgery at age 25, despite the risks

I’ll confess: When I wished for a spinal fusion in my teens, it was for cosmetic reasons. This was before kyphoscoliosis — an abnormal curvature of the spine both sideways and forward — had caused me severe pain and numbness that spread throughout my body.

I hated how I looked. I’d mask this hatred with jokes about being like Quasimodo. But inside, I loathed it so much that I’d refuse to have my picture taken.

I eventually got over this after a few years, when my desire to capture memories of my life trumped the dysphoria. I let people take pictures of me again. I stopped making terrible jokes about my appearance and learned to be OK with it, even if it looks like my spine hates being inside a body with SMA so much that it’s trying to escape.

But that doesn’t mean I’m OK with having extreme kyphoscoliosis and don’t want it fixed.

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Managing expectations

The first time I consulted a surgeon about having a spinal fusion, I was about 12. I was told that because of my lung capacity, I had a 50-50 chance of survival if he performed the surgery. If he didn’t, my life span would be about 30 years instead of 40, because the curvature would eventually compress my lungs. We couldn’t predict whether it would cause chronic neuropathy or not. So I opted out.

It wasn’t until a couple months ago that I got a second, then a third, opinion from other surgeons. My chronic neuropathy had become unbearable, and I spent almost three weeks in the hospital in August for pain management. I hadn’t sat upright for a month by that point.

The second surgeon was also worried about my lung capacity. Another area of concern was that the surgery might push pressure up to my neck. My curvature has worsened significantly in the past 10 years, and my thoracic spine (the middle section) is now rigid. The overhaul, he said, would be significant and might do more harm than good.

The third surgeon, however, who is the head of the hospital’s orthopedic surgery department, came up with a plan. He was handpicked by my brother, Gabriel, who had been gathering information for me at the hospital while he shadowed the staff there. This surgeon cautioned, though, that the procedure might not eliminate the neuropathy, and its feasibility depended on the degree of osteoporosis that I have. Also, an entire team of experts — from cardiology to plastic surgery and everything in between — had to give the go-ahead and support my care.

Then he asked me: “What are your reasons for surgery if it might not help your pain?”

How do you quantify quality of life?

I’ve thought long and hard about why I’m pursuing spinal surgery. The risks have skyrocketed now that I’m nearly 26 years old. It’s highly likely I’d need additional surgery for a tracheostomy and a gastrostomy tube if my lungs collapse during the procedure — if I survive.

The reactions from the people around me are mixed. My parents don’t think I should have the surgery. Gabriel thinks I should. My friends echoed the third surgeon I consulted, asking me about my goals. My healthcare team is deeply concerned about the risks.

My mum has said to me, “I don’t want you to see everyone else eating what you love while you’re unable to, once you have a hole in your throat.”

After much thought, I’ve decided that I’m OK with never tasting food again if it means I can have the life I want. (My SMA News Today colleagues with tracheostomies and gastrostomy tubes assure me they can consume the soft diet I already have.)

I’m OK with momentarily intense post-op pain if it means my curvature won’t worsen and cause further issues.

I’m OK with complications if my healthcare team has enough confidence that they’ve got me.

What I’m not OK with is my spine causing me to miss out on incredible career opportunities (like an invitation to fly from Singapore to San Francisco for the Game Developers Conference, for example).

I’m not OK with constantly canceling plans to go out with loved ones because my condition is unpredictable.

I’m not OK with increasingly struggling to breathe and to tolerate liquids when I sit upright, due to my ribs compressing my lungs and digging into my abdomen.

I’m not OK with my posture numbing my legs.

I’m not OK with my caregivers struggling in a losing battle to keep my spine as “straight” as it can be.

I’m not OK with how I can’t pay forward the compassion and effort my healthcare team has put into me because I’m struggling to do my disability advocacy, research, and journalism in my current condition.

It’s about more than appearances and pain now. It’s about whether the life I’ve put effort into building will slip away.

Nothing is confirmed yet. I’m still consulting with my doctors. But if anyone asks why I would risk my life for a spinal fusion, these are my reasons.

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.