Idiopathic Scoliosis

[Treaclex]

Hi there just looking for any info on idiopathic scoliosis from symptoms, diagnosis and treatment. 4 yrs ago I took my son to the Drs as his hip looked out of place Dr was in agreement that it didn't look right and off we went for an X-ray no breaks or fractures told to go home. Now it looks worse and I'm concerned as his shoulder on the same side is lower than the other side. We do have an appointment today and will no doubt end up in the X-ray department too but I don't know of anyone who suffers with scoliosis so any advice/ info welcome

I was diagnosed with scoliosis at about 11, monitored through my teens but they were reluctant to operate as they thought it was more dangerous than leaving it alone

A lot depends on where the curve is - mine is thoracic/lumbar, which is the worst place, the higher up the better, and they may be able to treat it with fairly minimal intervention

I had major stabilising surgery in my 40s with rods and pins but not everyone needs this

Ouch did you have to wear a brace at all or have any sort of physio ? I cannot see a curve to his spine so he may not have it but the indicators are there if that makes sense. I'm quite worried if it's not that then what is it. My DH had back surgery in 2015 so I can imagine how much pain you must've been in.

No I was never given a brace, I've had Physio, done yoga and pilates and had chiropractic treatment over the years

Have you stood behind him and got him to bend forward? Sometimes it's more obvious like that?

I won't lie, my operation was major surgery, and I have constant pain when I'm upright - but the alternative was my spine snapping as the curve had got so severe - so as my surgeon says 'I didn't operate to take away your pain, but to stabilise your spine, and you're on your own two feet' he's a sympathetic sort BUT mine is the absolute worst case scenario, my surgeon had never done a similar op and he's one of the top neurosurgeons here (I live in Portugal now)

Good luck

I haven't I'll try that now though. Will update you after we've been Drs as the last time they saw him the only 2 causes were dismissed straight away as he didn't fit the bill and the hospital consultant without seeing him thought I'd abused my boy but clearly no evidence and not something I would do. I really feel for you as anything to do with your back is absolutely awful and like you my DH still suffers but can stand up straight and walk which is something he really struggled with before his op

Update he has mild scoliosis and is being referred to physio obviously they said they won't be able to say how / of it will worsen but they've told me to get DH to show him his back exercises to strengthen the muscles in his back. His curves to the left and has developed that since 2013

Did they say which vertebrae are affected?

Absolutely, it is really important he keeps his back as strong and supported as possible, which means keeping his core as strong as he can

No they didn't but it seems to be middle of his back ?

As I said, the higher the better, if it's within his rib cage he may well find it barely affects him at all - lots of people have a slight curvature and don't find out until they're in their 30s or 40s as it doesn't cause them too many problems. Hopefully your son will be one of those

Ds was diagnosed late at 17 with AIS.

Ds start to complain of lower back pain not long after taking up regular running and weight training. Initially i put the pain down to overtrainimg but when ds continue to complain I took a look at his back. I was shocked hips and shoulders were out of alignment and when I got ds to do a ?adams bend the humping was very prominent.

GP was initially poopooing scoliosis but quickly changed his mind following examination and referred ds for an X-ray. Ds has a 23 degree bend and significant distortion of his ribs on his right side where is spine has twisted and it has bent.

Physio has had an enormous beneficial impact and ds has virtually no pain so would really encourage you get your son to try this.

I didn't find that much online I think generally when things are idiopathic this is the case. Your ds should be monitored, I would be asking the GP what degree of curvature your ds has, he should also be offered regular X-rays until he stops growing to monitor.

I think it is worth thinking about the emotional impact that this diagnosis can have. Ds is still processing this, he had been very focussed on having a military career and this is now not possible. We had a lot of I wish I had never went to the GP type statements and denial.

Time is helping with this.

Thank you so much for all the info you've both given. Your right about the emotional side as he's been really quiet since leaving the Drs and so have I. I will push to find out degrees and get him to exercise with dad till physio is available.

Hi Treaclex, sorry to hear about your son's back. How old is he? A lot depends on how much growing he has done and how much there's still left to do. My curve was detected a routine medical when I was 13 - as pps have said, leaning forward to touch my toes detected it. I was just monitored and had annual x rays on my spine until they were confident I had stopped growing and discharged me for good. It gets more noticeable in the adolescent growth spurt. Given that I only grew 2 or 3 inches more after age 13, there was no big drama. I have no idea what degree curve I have. I am very bony and skinny anyway, so it is quite noticeable when I am in swimwear or naked, but I suspect if I had more fat on my bones it would be less obvious! My curve is quite high up between my shoulder blades. It does often give me a bit of discomfort - I wouldn't say pain - but it has never stopped me doing anything at all apart from wearing certain clothes. Having a strong core helps, so yoga and Pilates are recommended I don't do either My friends never noticed really, though I had my charming brother calling my hunchback etc.

You sound like you are doing all the right things Treaclex I was quietly devastated for ds and still feel very worried about how he is adjusting to the whole thing.

From ds pov it I think is hard to come to terms with as it is virtually invisible to detect when he is clothed. I took photos for ds so that he could see for himself, we are also luck that where we are we get a cd of the X-rays .

It takes time and that is what I focus on and have also encouraged ds to explore new options in terms of careers.

I hope it doesn't take too long for your ds to get his physio referral.

He's 13 so still growing I think as he grows it will become more prominent but the focus now is to strengthen those back muscles

I found the following website really helpful.
www.sauk.org.uk/frequently-asked-questions/faqs-adolescent-idiopathic-scoliosis

This one too

www.britscoliosissoc.org.uk/patient-information/AIS

I developed scoliosis at 14 and at 16 had an operation to fuse 75% of my spine. If you want to pm me feel free.

My Dd has idiopathic scoliosis. She was diagnosed at 15 with a 38 degree curve. She been in a brace for 18 months. It's been really tough for her at such a difficult age but she's about to come out of her brace and her curve has reduced to 20. We're so pleased she's avoided surgery and I'm so proud of her attitude and for putting up with it for so long.
As a pp said it's the growth spurt years where there can be trouble but I'm sure your consultant will keep a close eye on things now you're in the system. But if you notice it getting worse let them know. My DD went from perfectly straight to 38 degrees in less than 8 months.

Idefix Thank you so much for those links will have a good read tonight.
John I don't know how to pm on here as I'm using the chat app on my phone but if you could pm me or let me know how to do it that would be great

Rory That's a great reduction it must've been really tough for her at that age too. I'm growing quite concerned as he is due a growth spurt soon, he's a very slim boy shorter than average for his age but I'm expecting him to sprout in the next year like his brother did. My eldest again very slim grew that quickly that he's been left with stretch marks on his lower back but with all the advice I've had here I now know what to look out for.

Treaclex, My son is 9 years old, he was complaining of hip pain over Christmas and when I looked one hip was further out than the other, he just looked slightly 'bent'. We took him to the out of hours Doctor who took one look and said he has Scoliosis. We then visited our GP 2 weeks ago who agreed and referred us to a specialist. We are now waiting to be seen on 6th February.

Hotpink I take it you've caught it early ? That's swift that he's being seen. I first took my son when he was 10 about his hip and nothing, the GP read the notes and X-ray report which stated his spine was in line back then. TBH I'm thinking about taking him back as there was no talk about degrees and no talk about specialists only the referral for physio and that they'll make a plan of action to suit my boy and see what monitoring he will need ? So actually a bit puzzled. Can you see the curve in your son's back ? Is there the difference in his shoulders too ?

It's a lot more common than you would think. Please try not to worry too much which is easier said than done. From what I understand most smaller curves are just monitored until growing has finished. I was desperately worried for my DD as her curve was really quite noticeable but following bracing she's pretty straight! But most importantly she shouldn't have any problems with her back as an adult.

I know I'm probably overthinking things but it's brought back the painful memories of DH suffering and although the surgery absolutely helped he still suffers now but it's more managed. My boy has now started joking about it but think he's just masking his own little worries

We haven't had x rays yet, his shoulders look fine, The gp said we were lucky it's been caught early. His hip sticks out slightly on the right side and he looks like he bends to the left. I've never noticed before so it must have come on slowly. I guess we will find out on 6th x