r/scoliosis

As a person with severe scoliosis it is really painful for me to see countless posts by people with no noticeable curvature coming into this group to ask us to diagnose whether they have scoliosis or not. We also aren’t medical professionals so it doesn’t seem appropriate. I understand that people want to get others’ opinions but it just doesn’t seem appropriate. Wondering if anyone else feels similarly.

I’m not convinced dysphoria is the accurate description of this feeling, but it’s how I described it to my peer support worker so I’m going with that.

27F. In January of next year, it’ll have been 14 years since I had my fusion surgery. At that point, I’ll have lived with this fusion for half my life (had my surgery at 14). Despite all that time, I’m still emotionally not really at the acceptance stage of all of this (even if I accepted it intellectually years ago), and find it really hard to connect with other people who have scoliosis. I can’t stop myself from comparing curvatures and being either bitter if their curvature isn’t as severe as mine (which unfortunately includes my younger brother) or feeling horrifically guilty about my own issues if their curvature is worse than mine. Coming into communities like this, support groups, or even just reading posts in the scoliosis tag on tumblr all end up feeling more like I’m putting myself through some form of psychological self-harm rather than joining a group of people who can understand what I’ve been through who can support me and who I can support in turn.

I don’t like living like this. I’m going to have this fusion and all the metal accoutrements it came with for the rest of my life, and the idea of spending the next 60+ years being so isolated and miserable about it makes me want to cry. But at the same time, I’m not sure what to do. I don’t really feel much connection to my body, it’s kinda just where I have to live in my mind (though it is no longer something I call “flesh prison”, which is an improvement! I use “Eva-Unit 98” to refer to my body now). This condition could have killed me, and actually came pretty close (my lung capacity was just above 30% at its lowest, and I was told that if my curvature continued to progress as it was, my ribcage would likely crush my lungs and kill me by age 25. This is also the biggest reason for the disconnect between “myself” and “my body”: “my body” tried to kill “me”, so even getting to a more neutral state from active hatred took a long time and a lot of effort). There is still a decent amount of curvature even post surgery, because I was at risk for paralysis if the surgeon moved it any more than he did. The support group I briefly attended was filled with people much older than me who had very different experiences to mine, several of whom even resented having had their surgeries, and had the metal removed later in life. While it was an interesting experience, talking with them didn’t give me confidence that I’d get to that emotional acceptance about my fusion they said would come with time.

Even when considering something like media representation, since being seen can help people feel more normal, I can’t imagine any sort of representation of scoliosis in something I’d actually read or watch; all my brain can conjure is children’s or middle grade books explicitly about explaining scoliosis, or something that practically shoehorns it in for anything aimed at adults. Having scoliosis affects my day to day life as an adult, in multiple ways, I should know better than to think it would be something that could only be shoehorned into media I could reasonably be the target audience for. Hell, if my biggest hang up about it was that I didn’t think that the writers would do a good job of accurately representing the day to day life of an adult with a fusion, I could write something myself! But I don’t even want that somehow. It’s like it has to be the focal point of the character or story in my brain, despite the fact that myself, the rest of y’all, and many, MANY others live full and complete lives where the scoliosis is most likely not even in the top 50 most interesting things about our lives. The closest I’ve found to representation as an adult that I actually like is a plush toy, a rabbit by a company called plushie dreadfuls that is specifically designed to represent scoliosis (I have one, his name is Oliver and I love him). And while expensive plushies can be argued as something of an adult market, it’s still a plushie, which are seen as childish broadly speaking, and the focal point of the plushie is still the scoliosis.

Scoliosis is a disability, I know this. I’m going to live with it for the rest of my life no matter how much that thought, frankly, horrifies me. It’s not something one gets over emotionally the same way one would get over falling out with a friend or getting fired. But I don’t want to spend the rest of my life isolated from anyone else who can understand my experiences, or feeling like my existence is just a constant loop of retraumatizing myself whenever I try to consciously exist in my body for any length of time. Any advice is appreciated, though if it costs money I may not be able to take it for a while at least, as I am a university student and thus poor. Thanks for reading.

I wasn't successful but my friend of a friend has been successful and is autistic... but yet I wasn't successful for it and have scoliosis with a 80 degree curve and a rib hump and unable to work due to being in pain everyday and night. Not just when standing but also sitting. I know it's not based on the condition itself and it's based on what you can do and things to help you but it's not fair. I have a disabled badge and access card and doctors letters with attached x-rays but i guess it wasn't enough. I do struggle with daily tasks also, should i apply again or is it a complete waste of time? Thank you :)

When I was deciding about scoliosis surgery, I found myself looking for people whose situation felt similar to mine, similar age, curve severity, location, or treatment/surgery, because their experiences felt more relevant to the questions I had.
Now I’m really curious whether other people did this too.
Before making a treatment decision for yourself (or your child), did you actively try to find people in a similar situation and learn from their experiences?

If you have 30 seconds, please tell me in the comments what you actually did. Where did you look? What made someone feel “similar enough” to you?
And if you voted No, I’m especially curious why. That answer is just as useful — no right answer here. 🙂

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I’m 47 and my scoliosis is really starting to catch up with me. My right hip isn’t in constant pain but hurts after long walks and sleeping. I was diagnosed at 12 I think and really never thought about my scoliosis except for my protruding rib and upper back. Do I go to a dr? A scoliosis specialist?

I'm a young guy with severe scoliosis and I'm currently planning spinal fusion surgery.

My current X-ray measurements are approximately:

• PTC: 55°
• Main thoracic curve: 67°
• TLC: 35°

My surgeon hasn't finalized the fusion levels yet. He said he needs bending X-rays first and said it will probably be L4, with L5 not being fused. So the current possible plan is roughly T2–L4, but this isn't confirmed yet.

One of my biggest goals in life is bodybuilding/building a very muscular physique. I'm not expecting to train exactly like someone without a fusion, but I want to know whether I can still build a seriously muscular body after I have fully recovered.

I'd especially like to hear from people who have had long thoracic-to-lumbar fusions, particularly fusions ending around L3/L4:

• Were you able to go to the gym after recovery?
• Were you able to progressively increase weights?
• Can you build significant muscle after fusion?
• What exercises did you have to avoid or modify?
• Can you squat/deadlift or do other compound movements?
• Did the fusion significantly affect your ability to train?
• How do you feel about your physical abilities years after surgery?

I'm looking for real experiences from people who have actually had spinal fusion, not just general medical advice.

This is super far fetched, but I’m starting to wonder if my severe and chronic emotional neglect as an infant onward had an impact on my skeletal and muscle development. I know it sounds crazy, but I’ve been really diving into my childhood and am starting to understand how much it affected me. Not just mentally, but physiologically as well. There isn’t a direct link, but I have done some research and there is definitely an indirect link. I would like to do more research. I am definitely not saying it caused it, but it may have played a role. I may be completely wrong, but 80% of scoliosis is idiopathic, meaning they don’t know the cause. I’m curious who else out there with scoliosis also experienced significant early childhood abuse.

I have heard a lot of stories that scoliosis progresses even after hitting maturity. Is here people who s scoliosis stayed the same during years? women? maybe to stop being so afraid of? Even after pregnancies? I have mild i think thorachic- and cervico thoracal scoliosis, i am 22.