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Children's health

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Original poster

Worried dd has scoliosis

49 replies

Bananarama3star · 14/02/2021 18:50

Dd is 12 and had a major growth spurt last year. She mentioned her waist goes in on one side so I asked to look and could see what she meant, it was almost straight on one side and went in on the other. I immediately googled ( I know it's not advised) and scoliosis came up. I couldn't see her spine looked curved when I asked her to do the bending over test.

I haven't wanted to make her feel self conscious by mentioning it or asking to look anymore but I can tell now that her clothes don't sit quite right. I don't think anyone else would notice, it's because I'm looking for it.

She is very nervous of dr's etc so I had a battle but I took her to the gp this week and she has referred her to the hospital. She said her hips bones were not level and when she done the bending over test she could see a curve .

I'm worried sick. We have made a private appointment to see a specialist on Tuesday as I know it will be a long wait with the current situation with the NHS. After the initial consultation though I'm not sure we could continue to afford anymore appointments privately.

Does anyone have experience of this and can advise what to expect at the appointment? Will they do an x-ray there and then or will that be another appointment?

I'm so worried about her future. She is a lively happy 12 year old who loves her sport and I'd hate that to be jeoporadised. She cried when she came out the gp's and I'm finding it hard to not do the same and be upbeat for her.

Thanks

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Copperblack · 14/02/2021 20:12

You can get seamless vests to wear under the brace which can help, and a lot of them are 3D printed now and much more comfortable ( and bright colours). I find Pilates better than yoga if you are looking for good exercises. Try not to worry though , there are clear pathways and services to support you x

Original poster

Bananarama3star · 14/02/2021 20:13

Thankyou Crackerofdoom that's so reassuring. I know there are so many awful things people go through and scoliosis certainly isn't life threatening or anything, it's just a bit of a shock to suddenly realise there might be something wrong with your child I suppose.

That's great your son doesn't suffer any issues with it. My dd is thin too, I would hate her to become self conscious of her body, it's a tough age re body image anyway isn't it! I'm hoping if she does have it, it will be a case of having regular check ups and doing exercises, I'd worry it would get worse as she grows though? She has lots more growing to do.

OP posts:

Original poster

Bananarama3star · 16/02/2021 18:11

Just an update incase this helps anyone else searching MN...we had the private appointment today. He asked her to bend over and twist to the side etc. He saw her waist as she lifted her top up but it wasn't until I got home and spoke to DH that it seemed odd he never got up from his chair and actually look at her spine, ribs etc. She had a t-shirt on the entire time.

Anyway he confirmed scoliosis She obviously needs an xray which is scheduled for 2 weeks time with the NHS anyway. He said he will review it and probably phone us with the results of that.

I feel happier as he was quite reassuring and had a sense of humour with dd which helped put her at ease. He mentioned the wait and see approach, a brace and an op and said how it is managed is completely up to her, she is in control etc. She has burst into tears since we've been home though and mentioned the young girl on Britains Got Talent that couldn't dance anymore after her op. From what I can remember hers was definitely more pronounced so I'm guessing quite severe. DD's isn't really that noticeable at all.

It's horrible not knowing how this will progress as she grows.

OP posts:

Sexnotgender · 16/02/2021 18:45

Sorry to hear you’ve had it confirmed. Hopefully the X-ray will give you more clarity on the severity of the curve.

Original poster

Bananarama3star · 16/02/2021 18:50

Yes, very anxious to actually find out for sure though.

I asked him based on his experience what degree curvature did he think it was, he said 'oh definitely no more than 40' 😬 I was presuming he would say much less than that. I suppose he doesn't know until the xray.

OP posts:

Sexnotgender · 16/02/2021 18:55

Under 40 is not terrible, scary as I’m sure it sounds. Hopefully it can be managed with bracing and if not it should be a single operation.
I’ve got a 17 year old who was born with scoliosis and hemivertebrae. She had her final fusion about 4 years ago. It’s difficult but you get through it. She’s had about 25 operations for it

RandomMess · 16/02/2021 19:01

The X-rays are amazing as you stand up and it gives a full 3D image.

I suspect today he was just checking that she does have one before putting her through an X-ray.

emeraldcity2000 · 16/02/2021 19:07

I have scoliosis too. I didn't need treatment. I get occasional back pain but manageable with exercises. As a previous poster said it did mean problems citing an epidural for me in childbirth but that's really been the only issue I've had.gl good luck xx

Original poster

Bananarama3star · 16/02/2021 21:26

Ah thankyou for your replies. It's calming me down! It's made me realise how different everyone's experience is so it's not possible to compare at all. Hard not knowing how things will be for her in the future but maybe that's a good thing🤷‍♀️

It is really good to hear others experiences so thankyou for sharing. Sexnotgender that sounds tough for your dd, 25 operations☹️
emeraldcity2000 do you mind me asking how old you were when you were diagnosed?

OP posts:

emeraldcity2000 · 18/02/2021 21:29

@Bananarama3star

I was 12 I think. X

Original poster

Bananarama3star · 12/03/2021 18:09

Just updating this thread incase it helps anyone else. We've had a letter from the private specialist who has had a look at her xray and decided she has a 34 degree curvature. It's more than I thought 😬 They want to see her in 6 months time to re-xray. He mentioned a brace but I know she won't opt for that. All a bit scary. Would be interested to hear of anyone else's experiences with a similar degree curvature... were there any specific exercises that helped she could be getting on with? Thanks.

OP posts:

Itsjustaride8w737 · 12/03/2021 18:16

Hi op, my mum had scoliosis as a teen.

In regards to the brace, she may NEED to have one. My mum was told if she didn't she would eventually be in a wheelchair, unable to carry children in the future etc. Her case was severe.

Anyway she had a steel rod inserted in her spine from top to tail, she then had a brace for around 6 months.

This was when she was just 16, she was in hospital for around 8 months, teacher's used to send her work etc.

Anyway she is now almost 60, she gets some pain but mainly manages on paracetamol, most days she is fine.

She always says she is grateful for the operation as she had me and can run around after her grandkids etc.

Best of luck to your dd.

Itsjustaride8w737 · 12/03/2021 18:18

Her angle was 49° curvature btw.

Sexnotgender · 12/03/2021 18:46

@Bananarama3star

Great that you got the X-ray and now know what they’re dealing with.

Anything that strengthens the core is good. Pilates, yoga etc.

MargaretThursday · 12/03/2021 19:43

I know two girls who had this operation at about her year. It did give for a tough few months while they recovered, and both missed around a term of school. But both would tell you that it made a huge difference to them and would advise others to have it done if the consultants advise.

AmazingBouncingFerret · 12/03/2021 20:06

I have progressive congenital kyphoscoliosis.
I was finally diagnosed at 12 years old after about a year and a half of thinking I looked weird but never mentioning it to my parents.
I never had a brace but was offered surgery at 15. Wish I’d accepted it but it didn’t bother me as much back then.
After having my eldest, pregnancy kicked it into action and the curve got worse.
After many consultations I was told I ought to get any more children ‘over and done with’ before my operation!
Because it was so progressive specialists were worried it would start to effect my lungs. I was on the operating table for 11 hours total my entire thoracic spine is pinned but not fused due to complications. I grew 2.5 inches in height.
Recovery was hard due to the complications but it hasn’t stopped me from doing anything I want to do. I’m on my feet all day in a demanding job.

The reason I wish I had it when younger is because my curve got more severe, it was over 100 degrees. It would have been easier to fix when it was ‘only’ 60. Also, I’m suffering with my lungs as they predicted.

Please try to gently talk to her about the importance of prevention procedures such as braces and surgery. They are scary ideas but so worth it. I’d hate for her to live with the regret that I do.

Screwcorona · 12/03/2021 20:16

Definitly dont panic..I have scoliosis at a 26° curve and although it definitly affects me I've been lucky enough to have a 5 year career as a professional sportsperson, pre children. It's not going to totally write off things she wants to do. Early intervention is the best thing so push for treatment as soon as you can.

I find the worst thing for me is being self conscious of my neck bending to one side a bit and not looking straight when I wear a bikini but honestly people get surprised if I say I have it as no one noticed.

Original poster

Bananarama3star · 14/03/2021 19:16

Thanks for the replies, a few of you have really been through it 😬😔 good to hear of a positive outcome though, although tough at the time.

It's the not knowing how things are going to be for her in the future, I like to be informed and prepared for things and I suppose this is something that is out of my control. I don't like it! I'd rather it was me than my baby ☹️

OP posts:

AmazingBouncingFerret · 15/03/2021 15:47

My daughter is reaching the age I was when I discovered it and I’m so hyper aware of her back and watching how she stands and how her clothes fit. I can’t begin to imagine how it must feel for you.
One thing I can guarantee though, with your wariness of not knowing how things will be. One thing that it certain, if surgery is recommended, your daughter WILL recover from it and will feel so much better for it. It’s very rare that someone who has had the spinal fusion surgery ever regrets it!

Original poster

Bananarama3star · 15/03/2021 17:04

Thankyou @AmazingBouncingFerret that's really reassuring and what I need to hear!

OP posts:

AmazingBouncingFerret · 15/03/2021 18:26

I thought the surgery would mean I’d become a delicate flower and I was so nervous about hurting myself whereas before, yes my back was curved but it was so strong!
I attended slam dunk festival in Leeds a few months after my surgery and miserably avoided the mosh pit. To my shame it was a few years later when I slipped on some rogue chocolate cake on a dance floor after watching a brucie bogtrotter cake eating contest at a nightclub in Liverpool and landed flat on my back that made me realise it was fine. I could still do all the stuff I wanted to do and I should stop being so nervous.
I even managed a cartwheel at my last Christmas works do.
I only regretted that the next morning due to the fact I’m 37, quite unfit, and have no upper body strength!

Original poster

Bananarama3star · 15/03/2021 22:28

😂 I knew cake was good for us really! Only natural to be nervous I should imagine after surgery.

My dad fell and broke his neck last year. He was very nervous after surgery too but the surgeon said it is stronger than ever now with the metal pins etc. Pleased things are all good for you now😊

OP posts:

perfectfacepaint · 31/03/2021 18:32

I have scoliosis, although I only found out in my 20's - picked up on a chest X-ray for something unrelated. Mine is at the top. Gp didn't want to refer at the time as wasn't causing pain so I went private and at initial
Consultation the surgeon said as it was a mild curve (26 degrees) then they wouldn't do anything and just leave it. I do have a bit of pain now I'm in my 40's but nothing I can't cope with. It is noticeable if you really look but if you didn't know I don't think anyone could tell. Hope you and torn daughter are okay

Ferny123 · 22/12/2021 07:35

Hi bananarama. Just been reading this thread and wondering how you ve got on. Also have two daughters recently diagnosed x

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