Scoliosis

[Natsku]

Does anyone have any experience in this? The school nurse just emailed me to say that she has referred DD (10yrs) to the physiotherapist because the curve in her back has got worse since it was noticed at her check up 6 months ago. She didn't say how much worse though, or what degree it is now, just said it has increased slightly but must be enough to be a concern if she's referring her straight away to the physio rather than to the doctor first.

She doesn't complain of back pain or anything, was only picked up because they check all children at school every year where I am.

not at her age, but much younger (3-4 years old)
does she ride scooters?
wear school bags other than backpacks?

consultant & physio advised us to ditch scooters and use bikes instead. also ergonomic backpack.
general core strength exercises (monkey bars, climbing) were recommended.

She uses a backpack, not any other kind of bag and hasn't used a scooter in a few years. DD just got back from school and she says she thinks the nurse said it was 6 or 7 degrees (was 5 degrees in the Spring)

Probably different with a younger child not in puberty but what kind of follow up are they doing, how often etc.?

It's a concerning because it's increasing. Although it's currently very small they can rapidly change during puberty

we were discharged from consultant after two years as back improved with simple measures.
physio will help immensely.

another thing: does she play an assymetrical sport or musical instrument?
make sure to mention it to the physio as they might have good exercises for that.

Physio here. It's good she has noticed abs has referred your daughter so she can learn early on how to manage her back and keep a strong core which will really help her.

I would also suggest that she needs to have the curve assessed and possibly x-rayed by the specialist team so that progression can be suitably monitored prior to her growth spurt in puberty

That's good @purplesequins fingers crossed physio will help DD similarly.
Doesn't do anything particularly assymetrical, she does circus school which is mostly cartwheels, skipping and walking on barrels and balls (the latter probably being good for her core as she has to keep a straight back to balance). She does go on the trampoline a lot, dunno if that's good or bad but I'll mention that to the physio. Hopefully its the same physio I had for my back as she speaks English.

@physwizz I'll ask about x-rays when we see the physio, if its the same one I had before she is very good at getting referrals for x-rays and orthopedics sorted out quickly

It is good that she has been referred. Scoliosis is usually not even classed as scoliosis until it reaches 10 degrees so please try not to worry in the meantime. My son was diagnosed at the age of 10 and his angle was around 10. It was monitored for around 4 years and then he was discharged ( he should never have been! ) right before a huge growth spurt and puberty. Now it is 20.8. It deteriorated quite quickly, He has physio and exercises to try and slow the progression and check ups every 6 months. It's good to keep an eye on it.

Definitely push for a specialist referral for an X-ray. It's so important to have baseline scans.

Oh dear, not good that he was discharged too early. DD is in the throes of puberty right now and I expect she'll hit a big growth spurt soon because her appetite has increased tremendously so its a good time for it to be spotted. From what I can gather, they refer at 6 or 7 degrees here rather than wait until it reaches 10. Hard not to worry, I've had back problems since that age so I dread that she might have problems too but hopefully not if they are so proactive here.

Hi Natsku. A mum of 2 recently diagnosed girls age 11 and 13. Just wondering how you got on? Watching and waiting isn't always the only option x

Hi there, my daughter has scoliosis and she was diagnosed at 13. Usually with scoliosis, the reason is unknown (idiopathic) and happens to girls more often than boys. It is especially common during puberty (my daughters case). My advice would be to get an xray for your child and the doctors will measure the angle of your childs curve. Curves can progress rapidly when your child is growing. She was diagnosed in august. My daughter had a curve of 35° in her first xray (December 2020) and because of the covid restrictions, getting treatment was much slower. So she didn't get a brace (one of the treatments) until 5 months later. Her curve had progressed by 5°. Because her curve was getting bigger, it became harder for the brace to slow it down. It is now around 45°. We've been told that surgery is now an option and we're still deciding. So physiotherapy is definitely good.

Thanks for sharing your story. Sounds very similar to us. Pleased you now have your daughter braced. Hopefully she's coping with all that brings ok - and you too. Our girls are both in a gensingham brace and are doing lots of schroth physiotherapy so hoping to use their growth (both Risser 0) to keep progression to a minimum. Suppose we can only try our best and keep everything crossed tightly to stay away from spinal surgery 🤞🤞🤞

I know two teenage girls who had operations aged about 16yo for this.

It's not a nice time, they missed a certain amount of school, and was very stressful while they recovered.

BUT a year later they were different children, standing tall and much happier in themselves too. Both of them had been in a bit of pain but hadn't really connected it with their back, and were much more active afterwards.

We've been told that surgery is now an option and we're still deciding. So physiotherapy is definitely good

I know two women who were operated on for scoliosis at around 13/14. One is 38, fine and leads an active, healthy life. For the other, now about 42, the operation "went wrong" and she's been in a wheel chair ever since. She's paralysed from the waist down.
I'm sure medical science and technology have come on a lot in the last 30 years, but I thought you should be aware that this is a possibility.

@tez67 it's such a hard decision. I thought I'd share my story that might help in some way.

We noticed my daughter's shoulder blade was sticking out in a swimsuit a bit over summer (she's aged 12, we first noticed the end of July). But it wasn't that obvious to be honest. We saw the GP early August and she said she suspected mild scoliosis, and referred us to a spinal specialist. We had that appointment mid-September, and we felt it was progressing in that time just from looking at her but couldn't be sure. We had x-rays that day which confirmed she had a double curve, top 53 deg and bottom 42 deg - so the only option was surgery - it was too late for bracing. It was progressing very quickly as she was just at the start of her growth.

Just 5 weeks later she had spinal fusion, fusing the spine L4 to T3, with metal rods and screws in place. I won't pretend that it wasn't incredibly stressful and challenging, from waiting for her to come out of surgery to those first days in hospital. However, less than 24 hours after surgery she stood up and took her first steps with support; she was home 6 days after surgery and started doing 2km walks daily; off any painkillers 2.5 weeks later and walking 6-8km a day; back at school 4 weeks later. She is now 10 weeks post op and it's hard for us to think about this major surgery she had as she seems completely back to normal and is so happy. She has some background aches that come & go but nothing that needs meds, and this is while her body continues to adjust to it's new structure. She can't do sport or twist/bend/turn for 4-6 months post-op to ensure the fusion has been successful, but that's a nuisance more than anything - and we wouldn't risk anything as we want it to be a successful fusion.

I would say a few things:

1. All of the doctors are very firm about the fact that backpacks, slouching, etc does not cause scoliosis. It might cause back pain etc but scoliosis is a medical condition. You can't do anything yourself to twist your spine in this manner. Even though it just appears as it did for my daughter with no family history, it is most likely there is some genetic history of it - maybe a mild case that was never picked up. And, with two younger children, doctors make it clear that they need to be monitored closely - they are at an increased risk but, likewise, might not get it.

2. I know two people who had it in the 80s and, other than usual aches & pains like many 40 year olds experience, they are absolutely fine. The procedure has changed vastly in these years too, so much more straightforward and a much faster recovery time.

3. We of course had worries but you need to weigh them up for your own circumstance. Our only option was surgery - it was progressing before our eyes and, if it continued, the curve would start to impact her lungs leading to pulmonary complications. That's the main worry with bigger curves at the top (thoracic). So it almost took the decision out of our hands. We still have some worries... could the hardware fail still?; Will her limited movement be an issue for her in life?; Will she have problems/pain later in life? But for us, we still decided on the surgery and we have no regrets.

I hope this has been of some help.

@ms4066 thank you for sharing your story. We are considering fusion since VBT has such a high rate for re-operation.

@tez67 yes we looked into VBT too. We were also worried about the high rate for re-operation and just that it is still a fairly new procedure so there's not that much long term evidence. We found this webinar really interesting and it helped some of our decision process - .