r/scoliosis

I'm wondering about how often these diseases run together, which one you were diagnosed with first, and what your symptoms were.

I had my first spinal fusion when I was 15, and then a revision last year when I was 38 that fused me t4-sacrum with iliac screws.

I've been wondering for about 10 years if I could possibly have ehlers danlos syndrome. But a recent surgery complication has really had me looking into it. I don't have the skin symptoms, my skin has always run towards dry. But I have about every other symptom. I first started questioning it when I was late term pregnant with my 11 year old, and developed public symphysis dysfunction. A midwife asked if I had ehlers danlos because of the that and my spine. I kind of looked into then, but I've looked into it more in recent years as my back started getting worse again. Then in April of this year, a year out from my revision surgery, I slightly slipped with my right leg going sideways and it broke one of iliac screws. Just like that. My neurosurgeon has said he believes me sacroiliac joints are more pliable than normal. I aslo have bad knees including instability and osteoarthritis. Only 40 and my left knee grinds so loud my 11 year gets grossed out.

Pic for attention. It's after my last surgery in June 2026 where thet took my ilaic 0screws out. You can see they had to leave part of thr broken bit at my SI joint because they it would cause more problems to try to remove.

Hi guys I have severe scoliosis and I already fused my lower upper back recently I seeing my doctor since my last surgery I had neck pain I told my doctor and he said it's normal because my neck is still crooked and he said he can do surgery in my neck but I will lost lots of my mobility I can't turn my head fully I really wanna do surgery because I'm already so grateful about my back fusion I had 100+ degrees before but I'm still very insecure about my crooked neck I want straight neck should I do it what are you guys thinking???

please let me know your opinions on this im 20 years old

Hi friends. I noticed in August my daughters shoulders were pretty uneven. Took her to the pediatrician who said Yes let’s get her over to a spine dr and xrayed for scoliosis. 2 weeks later I’m in an office while my daughter is fitted for a back brace with a 37 degree thoracic curve and two compensatory curves.

It’s crazy - she’s been a dancer for 7 years, and a competitive dancer for the last 3 years. She’s been in tumbling for 4 years. She is in zero pain.

She has a hemivertebrae at her neck that the dr explained can’t be braced. I’ve been reading about all of this, and our options, since that appt. We get the brace Oct 15, as well as her full MRI. But everything I’m reading states surgery to have the Hemivertebra removed needs to be done between ages 5 and 10…we are at 10… Is this what most people do? Is this the right path? I know they would have to fuse it at her neck, but as she goes through puberty, the rest of her spine can straighten out naturally. I feel like this makes the most sense and offers her the best long-term comfort with her spine. I am surprised the dr didn’t suggest that, but i also know they may make different decisions once they’ve done the MRI.

I would love to hear from anyone who had a thoracic hemivertebrae removed as a kid and how they were affected by that. This is all so shocking and new to us.

I’m trying to understand why the specialist won’t do fusion surgery on me when my pain has been steadily increasing since I was 12 years old. I went to an orthopedist nurse practitioner Thursday. He sent my x-rays to the actual specialist and had a talk with him. He doesn’t want to do the surgery because it’s not causing any issues or whatever. Just besides the crippling back pain and the ramp up in nerve issues in my legs and arms. He said I’m going to go get an MRI done to check for nerve issues and to start physical therapy somewhere again. I was given 8 days of steroids to help with things. I’m really hoping they find nerve issues so I can make a case that fusion would be the best idea for me. I was told when I was 16 it was up to me if I wanted surgery done because I was on the surgery border. I was scared so I said no. I am in so much pain now that it’s making all of my mental health issues worse. I can’t work at all. My best friend just moved in with me to pay all of the bills. Has anyone dealt with a specialist saying no to fusion? I’m at a loss. 25 and 48 degree s curve.

My cousin asked me if he has scoliosis but I don’t know so I’m asking people who actually know what they talk about. He can’t really seek professional help without like REAL evidence (my uncle doesn’t make appointments on a wim) he’s 13-15ish.

First picture is viewed from his front, and the second one is from his back.

I had to crop the image for privacy reasons.
He’s also told me he’s been having a lot of back pain on his right side lately but I think that’s unrelated.

Just wanted to share a litttle of my story 😊

I was born w kyphoscoliosis. I have spent years ashamed of my body & its condition. I am slowly learning to accept the body that has carried me for 28 years. I was told by my ortho dr that I will need spinal fusion surgery. I have no plan for it, as I suspect I have a form of Ehlers Danlos syndrome. I do not have a true diagnosis for EDs, so without that I am not going to be looking into surgery unless I know for a fact if I have EDS. I am so use to being twisted & crooked that I fear the surgery may leave me off in worse condition but there is no true way of telling. The photo on the left is me standing straight. The second photo on the right is me trying to force my shoulders up to be even & “straighten out “ as you can see my arms go crooked lol.
One of my ortho drs in 2020 told me my scoliosis would not get worse as I was already an adult. He measured my cob angle to be 28 degrees in the thoracic. I just had new X-rays done in April of this year, my thoracic curve is now 40 degrees.
I’m trying my best to cope w having this spinal deformity & embrace it. The human body amazes me & im surprised at how strong it is 💪🏼 they don’t call us warriors for nothing!

I’m a 22-year-old male with S-shaped scoliosis, around 32 degrees. I’ve been consistently working out at the gym for almost a year now. I’ve built some decent back muscles, and my overall back strength and stability feel pretty good ( see the pics) . However, I still get occasional mild back pain. It’s mostly a pulling sensation that comes and goes in the area where the bend is . Nothing severe, but it’s been getting slightly worse lately. I’m wondering if anyone here has dealt with something similar. Are there specific exercises, stretches, or routines that have helped you reduce or eliminate this type of pain? I’d especially appreciate tips from people who lift while managing scoliosis. Thanks in advance.

Hello!! I’ve been having a blast with my scoliosis for nearly 20 years now. Braced for three years around middle school. Got my usual two year checkup a couple of days ago and now she’s twinning at 41 degrees and 41 degrees. Two years ago she was at 45 and 41. Every checkup shows this, gets worse then evens out and gets worse then evens out again. The tilt is new though. That wasn’t present two years ago.

I am 30 now and this kind of surgery would get harder and longer to recover from with age, and the angles are steadily progressing. Should I consider getting surgery done earlier rather than later? Or at all? I’m in no rush unless I should consider it. The pain is livable for now (PT + exercising) but it has slowly been getting worse. I think as I get older that will speed up.

I had asked my doc the same question and I didn’t get a clear answer. I have Pure O so unfortunately my mind has been on repeat about this 🫪