Think DS has scoliosis. Please help me not to panic

[WorriedPleaseTalkToMe]

DS is 12. I've thought for a while that one of his shoulders is higher than the other. The GP looked a couple of years ago and said it was just "one of those things". It looked postural. So I ignored it.
This evening, I asked him to do the bending over scoliosis test, and he's definitely uneven (albeit not dramatically so). I'll make him a GP appointment next week, but just need a hand hold. I know it's not the end of the world, but sport is absolutely his thing, and he's also quite anxious and scared of hospitals. Can anyone tell me some positive things/stories? Thank you x

I was diagnosed at 10, it didn't progress and while I have it I don't think about it at all and it has no bearing on my life.
When they diagnosed me, they looked at my mum and diagnosed her too (she'd made it to her 30s without knowing).
We both have it very mild.

Dp has always had one shoulder noticably higher than the other since childhood. He's also been told several times by various health professionals that's it's just one of those things. It's never stopped him doing anything.

Push for a diagnosis ASAP. Scoliosis can develop extremely fast. I was diagnosed in the January and had to have surgery in the December because my curvatures developed too fast for bracing.
Better some doctoring now, than a lifetime of wishing he'd gone. Early diagnosis can help avoid surgery, and though mine was life-changing for the better, it's still a massive event.

Thank you all. I'm worried it's been there a while. Is 12 quite old for a diagnosis?

I don't think so. I was 15 and remember being told I was old, but that may have been in terms of bone density.

Hello - sorry to hear this. I'm not sure if this will help but my exH was diagnosed with Scheuermann's disease when he was 11. He had a back brace/cast for 2 years to correct his posture - it went across his torso and down one of his thighs. They'd periodically fit him with a new one that went down the other thigh. He had to sit on a stool in the classroom during this time as he couldn't get into a sitting position but said that his friends were cool about it and even though it was inconvenient and sometimes uncomfortable, being a kid he just carried on. Anyway, that cured it. Ever since he's been entirely normal and strong. And very physically fit, it never stopped him doing a thing.

Fingers crossed for you and your DS... everyone has their cross to bear but I hope this is fixable and will only make your DS more determined to pursue his sports.

Thank you all. I'm worried it's been there a while. Is 12 quite old for a diagnosis

I'm 58 and was diagnosed only last year, so no, not quite old at all. Mine is mild and was only found during an examination for something else. Am fine with it though.

I was diagnosed age 13, very common to be picked up during teenage years. I was monitored until 21/22 and it has actually settled down with very little aches and pains since then. Has had no bearing on my life since! It could end up being very mild like most cases OP try not to worry

Thank you all so much. This is so calming

My daughter was diagnosed at 15/16.

It looked quite pronounced when she first told me she was worried and I checked her with no top on. However, it really hasn't affected her and doesn't really show unless you look for it.

She had regular checks for about 3 years before the hospital discharged her. Gives her no problems at all.

Hope it will be the same for your DS

I was diagnosed at 11, very rapid progression, surgery at 13.

I live a very normal life, and have been skydiving, skiing, scuba diving, did DofE, various manual and non-manual jobs etc. No pain now, unless I do lots of repetitive heavy lifting and twisting. Main difference is a distinct preference for soft mattresses - I had to sleep on an air mattress for about 4 years after surgery (despite being normal in other respects after a year) and continue to take a "the softer the better" attitude to these things.

The scarring did fuck with my self confidence when I was a teen though

My ds has muscular scoliosis. It's postural and caused by his neuromuscular disorder.

However on an mri of his spine it's fine! It's only a concern if the spine itself is curving rather than muscles causing it and it can go into correct position.

Paediatric nurse here. We do probably about 10 scoliosis repairs a month. Some weeks we've had five! Most kids have a really good result. Recovery is usually 6 days in hospital and 6 weeks off school. Physios get them up and going pretty quickly. And we have a good protocol for pain management.
There are sometimes other options such as bracing that can be tried first but surgery is usually the way forward.

12 is about average for diagnosis. Most girls present around puberty. It is mainly girls we see but occasionally have boys.

Diagnosed at birth with four different forms, surgery at four, potentially another before I'm 30, deffo before I'm 40. My spine is crooked and hunched but I'm living fine and having a good life. Been on several theme park holidays and going on another this year, currently looking into completing a skydiving experience. I'm sure he'll be fine

My daughter was diagnosed at age 9, various braces followed by spinal fusion surgery at 14. She’s fine, happy, beautiful, successful. Skis, sails, runs (and loves showing her scar off). She’s 21 now.

It is very scary at the time for parents but best to know.

Please ignore the "surgery is usually the way forward" comment above. Have Look on the scoliosis UK website and read up before your doctors appointments.

As some people have said - the vast majority of adolescent scoliosis is mild, benign, and needs no surgery.

You're all amazing - thank you so much for the info and stories. I am reading, re-reading and digesting every post.

I was diagnosed at about 11, monitored through my teens then discharged. 10 years ago this month I had fusion surgery after the scoliosis worsened and I developed spondylolisthesis. My outcome is the best they could hope for but I’m still pretty disabled although my case is unusual and my fusion is from T10 to L5 so I can’t bend or stretch/twist at all

The likelihood is that your son will be mildly affected and possibly not really notice it at all. The higher the curve up the spine, the better imho

I was diagnosed at 11, surgery at 12. I have had no problems since, whatsoever. I believe I was advised that extreme sports weren't a good idea, simply because any back injury would be more complicated on a fused spine. I also have less flexibility in my back than most people. But if I was inclined to play football, hockey, athletics etc it wouldn't be a problem.

Hi *WorridPleaseTalkToMe..
I am in the position as you ..and nearly posyed the same thing

Ds (14) has diagnosed scoliosis at 30 degree. Spotted by me at 13 .he has a dip0/pbit missing from his hip area.

MRI i0s good but x ray is curved.
We go back in june for another x ray and wait.
Massive hand hold from me x

Just another anecdote. My mother has severe curvature, a full s-bend in her spine. She was diagnosed in her 20s, long after she'd finished growing. There was nothing they could do for her, possibly because of the era and that she was based in rural Australia. She's since found that one leg is about an inch shorter than the other, no wonder she's crooked!

She retired earlier this year at 69, having worked her whole life. She was active into her 50s, played netball, did physical culture and still gets to deep water running and aqua classes every week. She can walk for miles and miles, thankfully because she doesn't like to drive.

Physios wince when they see her xrays, astounded she is mobile and (for the most part) pain free. Never medicated for pain. Now she is shrinking with age, it's getting harder to breathe deep breaths, but she also admits she needs to lose a good 10-15kg to take some pressure off her torso.

My brother and I were very closely observed but that didn't start until we were 12. So you aren't late! Wishing you all the best.

I was diagnosed at 13. I did have corrective surgery but I swear you toy it wasn’t as bad as I had feared. It’s so worrying when it’s your child but get on to the GP for a diagnosis. The fear of the in known is just horrid but if you have some information to work from it will feel easier. There is so much that can be done to help scoliosis and since my treatment it barely bothers me apart from occasional, mild, back ache. I’m 36 now and after recovery I could just get on with a normal life.

Should say unknown not in known sorry!

A friend's daughter was diagnosed and operated on aged 13. Not a pleasant operation but she. And through it really well and is 100% recovered. Do your research on who does the procedure as there are some serious experts in this country who you can access on the NHS.