Why I decided to blog about my scoliosis journey

All information in this blog post is based on my own experiences and is not meant to replace medical or professional advice. Always seek the advice of medical professionals after reading anything on this blog. For more, please read my disclaimers page.

Hi, I’m Turtle. Yeah, it’s a pen name. But that doesn’t mean I’ll hold back, in fact I’ll probably share more details about my life because I have the pen name. If you’re here, you probably have scoliosis. There’s actually quite a lot of people with the condition, but we don’t really talk about it.

But why? Scoliosis affects a ton of people, and it’s also largely misunderstood. More than 80% of cases are idiopathic, meaning the person who has it didn’t do anything to get it, it just happened. Doctors don’t know why most of us have scoliosis.

And then if you look at the treatments, there’s a lot of options: bracing, schroth, PT (physical therapy), spinal fusion surgery, and then a swamp of scammy people claiming they have the cure.

I personally had the spinal fusion surgery. And my fusion is long, it’s from T4-L5. I have two titanium rods and around 20 screws in my spine (hence the blog name, turtles + titanium = turtanium. I thought it was cute). I had the surgery at 13. My scoliosis progressed so quickly that I didn’t have the option to brace, and no one had heard of schroth when I was a kid.

If you’re a parent of a scoliosis kid, take this next part with a grain of salt: but I now have a lot of chronic pain from my fusion. It’s so long that I’ve lost my entire ability to twist and move in different ways, which forces some muscles to work overtime to complete tasks, and others don’t really fire up at all. There’s more to it too; some non-scoliosis conditions are causing me issues as well (I’ll get to that in later posts). But this is considered a-typical for a spinal fusion patient, and scoliosis surgeries (for minors) have gotten less invasive since 2009.

I know I’m not the only one navigating post-fusion complications. Nor will I be the last. And I know there will be lots of different people looking for information on the condition as well.

I’m launching this blog on June 26th: International Scoliosis Awareness Day. I want to be able to advocate for early intervention if possible. Try bracing, try schroth first. See if you can prevent the need for a spinal fusion surgery.

And if you do have a really really big curve and need spinal fusion surgery, I don’t want this blog to scare you. Rather I want it to be a bit realistic on what recovery looks like, and also what I would’ve done differently if I could go back to my 13-year-old self and give myself some advice (like go to physical therapy post-op).

Eventually I want to start a reference section of places you can go to learn more about scoliosis, and safe methods to treat it.

There is no cure for this condition, just treatments and management. But there’s a lot of people looking to prey on our misfortunes. I’ve seen lots of cult-like followings for braces without science behind them. Eating ‘hacks’ to prevent scoliosis from happening. And of course, every chiropractor ever claims they can cure scoliosis. Spoiler: they can’t. Listen to your doctors, ask a ton of questions, and choose the path you think is best for you.

But yeah, I hope you like my little blog and my little story. Drop me a line and say hi if you want to!

With much love,

Turtle