I recently had surgery to correct scoliosis that I’ve had since, and because of, my spinal cord injury (SCI). I’m writing this blog because I’ve talked to lots of people with disabilities about this, because it’s a common complication, and lots of people in the able-bodied community who are curious and have so many questions. I want to write about the surgery to share my experience to help others going through something similar, educate people about this common complication of SCI, and share an update on this big happening in my life generally.

Scoliosis is a very common complication or condition after an SCI because the muscles that hold and stabilize my spine no longer work, so my lower spine just collapses under the weight of my upper body. My spine starts to look like a C.

I have known I have scoliosis since about 6 months after my injury when x-rays were done to check on the rods and screws that were put in my back after my accident and they saw a curve beginning. I have been followed since then, and the curve has progressively gotten worse – which is what my doctors have all said is normal and to be expected for someone like me with paralysis. The larger the curve got, the clearer it became that I would need surgery eventually. The questions then just became when and what surgery.

(Photo on the right: This picture was taken about 4 months after my injury. You can see that I’m already sitting off to the left of my chair which is because of the scoliosis.)

I will spare all of the nuance and detail about when, but suffice to say that I wanted to get the surgery when (1) the curve was big enough that it was definitely needed, (2) the curve wasn’t so big that it couldn’t easily be corrected back to a straight spine (in other words, the curve was still flexible), and (3) I didn’t have other complications that came from the curve that were not correctable. While I didn’t have pain in my back from the scoliosis, I did have pain in my neck because, while my body was curving one way, I needed to compensate to hold my head straight, which put more strain on the left side of my neck. The longer I waited to have the surgery, the worse my neck pain became and the more likely that I could potentially develop irreversible damage, such as nerve impingement or disc changes.

And then what surgery to get? The most common surgery for scoliosis is a fusion, rod and screws in your back to keep you straight. The downside of this surgery is that it severely limits your mobility. For me, the movement I have in my back to bend and twist is a huge amount of the mobility for my body. Limiting that is not ideal.

I was lucky that I learned about a surgery called tethering, which is newer, developed in the last 15 years, and, as far as I’ve been able to tell, I’m the first person with a spinal cord injury to get it. This surgery puts tethers, or basically synthetic rope, between each vertebra on one side, and they tension them while I’m on the operating table so that I stay straight. The benefits compared to a fusion are (1) I maintain about 90% of the flexibility of my spine (I’ve noticed no change here), (2) my recovery is about half the time – 3 months vs. 6 months with a fusion – and (3) if this doesn’t work it doesn’t preclude me from getting a fusion in the future. The downside, and risk, is that the tethers can break – not all at once, but usually one at a time. My surgeon believes they won’t break soon and this will work well, but that is always a risk. If they all break in the next few months, I’d go back to the same curve I had before – this is most unlikely. If they break one at a time slowly over the next 5-10 years – this is more likely – my body will have compensated, and my curve won’t go back to how big it was right before my surgery. And if they do break, they can always replace the tethers or do a fusion surgery in the future if that’s really necessary.

I have been thinking about this surgery, researching, talking to people, and getting second (and third) opinions for years now. It felt good to finally pull the trigger and get the surgery!

The actual surgery went well for me, and my surgeon was happy with the outcome. The initial recovery was pretty rough, and I was thrown back into a lot of the issues that I had right after having my spinal cord injury (lightheadedness when sitting upright, so not tolerating being in my chair for long periods, nausea, constipation, etc.). When I got home after 8 days in the hospital, I started to feel better and more like myself. I needed to take time to rest (my body was exhausted) and take it easy as my body recovered from surgery.

At this point, a little more than a month post-surgery, I’m feeling pretty good. I have pain occasionally, but it’s not bad. I’m able to move around my house and do everything I need to in my daily life (transfer to and from bed, the couch, the toilet, etc., cook meals, get dressed, etc.). The hardest part for me now is that my surgeon wants me to do pretty much nothing for 3 months – that’s not typically how my summer months are spent!

The good news is that I will be cleared for activity 2 weeks before the 20th Annual Kelly Brush Ride! I may not be in the best shape for the ride, but I guarantee I’ll be there and happier than ever to be out on my bike!

So now you know more than you ever thought you would about scoliosis in someone with a spinal cord injury! Pulling the curtain back on spinal cord injuries is something I’ve been doing since I got hurt. I hope this provides you with a little more understanding of what I, and so many others with SCI, think about and deal with. Not so you will pity us but so there is greater understanding and empathy in the world. And, although not everyone is an open book, I am, so ask me questions! I’m always open to sharing more and creating greater understanding in the world.