Is this scoliosis ? DD 17

[doormatrevolution]

I feel awful that I've never noticed this before , but DD mentioned she thinks her "back isn't straight" and when I've had a good look and feel her alone seems to have quite a pronounced curve - I've tracked her spine with a felt tip and shocked at the curve in it

I will ring the doctors on Monday but wondered if anyone can put my mind at ease !

Not an expert by any means but I believe scoliosis is characterised by rotation of the spine as well as the curve(s).

When they use a scoliometer, they are assessing the rotation. The SOS therapists talked a lot about my daughter's rotation during her first few appointments. Over time, we have managed to decrease it from degrees of 3 and 4 in some places (I think anything over 5 is considered significant at our clinic) to 0 and 1.

I don't entirely understand it though either, despite having been doing this nearly 4 years!

@doormatrevolutionits crucial that you’re referred to a spinal specialist NOT a general orthopaedic doctor. There are seven spinal surgery centres in the UK for children including GOSH, Bristol and Alder Hey.

you need an MRI, cobb angle all of which are through the spinal team. Most surgeons agree over 50degrees require surgery.

My daughter was diagnosed at 11 and had surgery at 12. Luckily her surgeon agreed to operate at just 40 degrees before it worsened. A week in hospital, three weeks of basic painkillers, a year of restrictions and now you’d never know.

This is what is mentioned on report - as well as “hyperkyphosis” and curves in both thoracic and lumber region

Fingers crossed you get a clearer picture tomorrow. 🙏🏼 how’s your daughter doing?

I'm so glad your daughter's has been diagnosed now. I was 66 before mine was confirmed.

Make sure she sees a spinal surgeon. Not a generic orthopaedic surgeon. ( The ward I worked on used to take post op scoliosis patients)

It’s a spinal surgeon we’re seeing tomorrow x

Not sure if paediatric hospitals go to 16 or 18 but if the latter, if you’re near London ask to be referred to the team at Great Ormond Street. They’re incredible. The very very best. We investigated private too but you need a hospital with ICU/HDU and most private hospitals don’t have these.

I’m glad you’re getting it sorted. Mine was kyphoscoliosis too.Very severe and had to wait until I had carried children before fusion surgery. It was more aggressively progressive after I had children though, my curve was 106 degrees and I was on the operating table for 12 hours while they fixed me to the best they could.
The photos I’ve posted were taken 15 years ago. Now I’m older I’ve had to accept my limitation sometimes, only thing I can’t really do it lift things high up and go running due to the impact.

Take plenty of snacks and drinks to appointments, I don’t know if it’s any different but sometimes I was waiting a long time between different tests and would be there the whole day. My Dad was with me the whole time and would treat me to kfc on the way home.

Listen and be understanding with your daughter, try not to say things like “oh it looks fine” we know you mean well but we also know it’s a lie! Best thing my mum did was agree with me when I threw tantrums over clothing (teenage hormones and orthopaedic deformity are not a good mix!) and helped me make alterations to the clothing so they looked better. I was lucky because she was an excellent seamstress and she really worked magic.

Good luck to your daughter today - and to you.
and don’t feel bad for not noticing it - my very wonderful mother who I love to bits blamed my mild crookedness when I complained about it aged 10 at not sitting at the table to eat my breakfast (I liked to lie on the floor in front of the fire!) so you’re already better than her!

Just to say, this is almost always adolescent idiopathic scoliosis.

At 17, the chances of the curve progressing will be fairly small, but they will do x-rays and some observation to work out what the likelihood of the curve progressing.

Scoliosis always has a rotational element, so I wouldn't worry about that being worse or extra, just because it's reported on an x-ray.

I'd start by having a look at British Scoliosis Society for some basic info.

Remember, most scoliosis doesn't cause pain, and doesn't cause problems with the spinal cord, or need any type of surgery, or even intervention, but always best to see an expert.

My mother was diagnosed with scoliosis at the age of 81. She has complained of back pain ever since I can remember! Op definitely get your dd checked out.

She has already reported pain. Scoliosis is painful, sometimes mild, sometimes severe. Let’s stop perpetuating the myth that it isn’t painful. I grew up being told scoliosis shouldn’t be painful and felt pretty shamed for the pain I felt as a young adult.

It was painful for you, it isn't for everyone.

I'm sorry that your symptoms weren't believed or were minimised, I would hope that we've moved on as a profession.

It’s individual. My daughter never had any pain pre or post op. The day of her surgery she had a 40 degree curve.

I have no doubt you do an excellent job at what you do and you have helped countless people. but the OP’s daughter has already spoken of pain so you did minimise it, most likely unintentionally, but you did. I just wish that the first things most medical people, and indeed non medically trained people say about scoliosis is “remember, most people don’t feel pain”

There's also lots of people without scoliosis with back pain. 33% in the general population compared to 42% of people with adolescent idiopathic scoliosis.

I actually missed the paragraph where she mentioned pain. But I stand by my comments that most people dont. And indeed that 3/4 of people with scoliosis would, statistically, still have had back pain withiut the scoliosis.

This is one of the things that's really important to understand when considering treatment options, as correcting the curve doesn't guarentee improving pain.

I have this and only realised in my 20’s. My mum felt and still feels awful that she never noticed. The only symptom I had was back ache and the feeling like I couldn’t get comfy, had a chest x-Ray and it was picked up. I was referred to an orthopaedic surgeon and he said that because it wasn’t causing major issues and because of my age (unlikely to get any worse) they wouldn’t do surgery and referred
for physio. I also do lots of exercise and weight training as he said keeping the back strong will help.

he did say it runs it family and particularly the eldest girl the family, I have a young daughter and I am
constantly looking, without her knowing.

there are lots of support groups on Facebook

@doormatrevolution How did the consultation go?

How did it go OP?

RVI Newcastle does lots of paediatric and adolescence scoliosis surgery and surgeons are very good

We had the consultation last week and she actually has three scoliosis curves in her spine , one of them is over 60 degrees so she will be having spinal fusion surgery in the next 6-9 months.

Just wanted to update for those kind enough to share their experiences when we first discovered it.

Thank you so much for updating us. My she's a brave lass, but it's worth doing at this age . I wish I'd known as a girl.

Lots of TLC for her post op.

I had three curves but was not operated on as a teenager. By the time I was in my fifties two of them had progressed to 70 degrees and I also had age related degeneration.

My surgery, a very long fusion, was nearly three years ago and now my spine is virtually straight. I absolutely love the result. My spine also feels strong and supported and my torso is no longer squashed. I grew two inches!

Because of my age when I had surgery my recovery has been long and not without issues. I know that teenagers typically bounce back amazingly well after surgery and am slightly envious that your daughter will live her adult life with a strong straight spine but excited for her that she has this opportunity and so grateful for the amazing surgeons that specialise in, and perform this surgery.

Can I suggest that she has a look at Curvaspine on Instagram. So much info there from Emily who had spinal fusion surgery in her teens, then taught Pilates for scoliosis, and now is a physiotherapist specialising in scoliosis.

Lots of good wishes for you too, I think it was easier for me to have the surgery myself than it would have been to know my daughter was having it!