scoliosis is a blight - please sympathise or advise

[scoliworrier]

My darling daughter has scoliosis. She is beautiful and smart and has a great job. But she is a mess mentally and physically because of this awful condition. Body dysmorphia, pain. Now an eating disorder and general depression and feeling that she is worth nothing. I hate it and feel there's nothing I can do. The last time it was checked (privately) about 4 years ago the surgeon thought it wasnt right for surgery. Daughter is scared to go back and tbh would rather swerve surgery.
But it's blighting her life. She is in her mid twenties and lives hundreds of miles away from us in London. It's just so hard when they're adults. But my heart is breaking for her.
Her spine has an S curve and is twisted too. Clothed you cannot see it.
Just reaching out really with a cry of anguish.

My DD also has scoliosis - I fully empathise with you on all of this, honestly when she was diagnosed (at 16) it wrecked her life and now 3 years on things are finally getting back on track. Her curve developed very suddenly and with little warning. In a matter of months my happy, confident, successful, social girl turned into a shell of her former self.

She suffered awfully with pain and could barely make it through a day of school as it was so intense, forcing her to resit a year of A levels. She was incredibly self conscious of her curve and went from a girl who loved wearing dresses, crop tops etc to hiding away in baggy clothes. Even refused to go to her prom which she’d been looking forward to for years as she didn’t want anybody to see her back😞 All of this had massive direct implications on her mental health - she developed severe anxiety and depression and there was a point where she barely left the house for months, not even to see friends. Genuinely she didn’t recognise herself and neither did I. She used to be the life of the party and all of a sudden she wasn’t even ‘living’, just existing.

She was borderline for surgery (48 degrees), her consultant said it was 50/50 but we decided to go for it as she felt that it was the only hope of getting her life back. Thankfully this was the right decision as 6 months later by the time she had her operation it had already worsened to 56 degrees. Honestly it was the best thing that she’s ever done - almost 2 years post op and she’s pain free + perfectly straight, you’d never even know she ever had scoliosis. Absolutely no regrets, we are eternally grateful for the surgeons giving her a new lease of life. Recovery is tough but quicker than you’d expect and so worth it for the end results.

DD is currently away in Canada working a season as a ski instructor before she heads to uni in September - with her ‘new’ back she is absolutely unstoppable. The change in confidence and happiness levels has been amazing to see

Name changed for this. My dd has scoliosis, she has a curvature and a rotation, diagnosed when she was about 12. It looks very obvious on xray, but not that noticable when dressed. She was looked after at the Royal National Orthopaedic Hospital in Stanmore and attended outpatients in central London. If your dd lives in London she can ask her gp to refer her there.
I was very impressed by the standard of care. She used to have her scans on Sunday mornings and her consultant check ups early mornings before school. She didn't progress to surgery in the end and her pain is manageable with exercises and chiropractic, for which she pays. I would urge your dd to get a referral to RNOH.

Seconding the RNOH recommendation - DD had her surgery there and we couldn’t have asked for better care or treatment. The spinal surgeons there are all at the very top of their field. RNOH is the centre of excellence for scoliosis in the UK and ranks very highly on a global basis, no better place to be.

I'd see if sgescniw eligible for surgery OP, I've only known success stories for that.

Thank you all - especially @clipclop5 - the mental toll is worse than the physical isnt it? I think I will urge DD to get a Stanmore referral. But she's a typical 25 year old and not very good at going to the GP bc she has moved around so much in London. I suppose a private GP could refer for an NHS apt?

I’m not sure that a private GP would be able to do an NHS referral to be honest. You can book a private spinal consultant appointment though without a referral if that would be an option? We went private for her initial consultations and scans, from there the consultant was able to add her on to his NHS surgery list which saved a lot of time and waiting around. Alex Gibson was my daughter’s surgeon - he was absolutely fantastic and a lovely man. Would really recommend

Oh thank you @clipclop5 for that explanation. I honestly think it would have been simpler if 7 years ago when she was diagnosed the consultant had just said 'yup let's operate'. But he didn't. And he was private, so I assume he really meant it!
In the meantime, guys, since you've all been so helpful, can any of you recommend any excellent t Physios in the London area? Thanks x

My DS had really severe scoliosis and had a full spinal fusion at 15. It has changed his life. He was severe though.

We’ve never used her as we’re actually in Ireland instead of London (just flew over for surgery + appointments!) but Debs Turnbull is specially trained in scoliosis and gets a lot of recommendations + good reviews on the various scoliosis groups

Yes, I get what you mean - it’s for easier to have the consultant make the decision for you. It was awful when my daughter was at a degree where she could go either way, it’s such a difficult decision and we just wanted someone to say yes or no!

Yep - DD was around 45 degrees with her worst curve when diagnosed, then went up to around 48 but hasn't been measured since pre pandemic. Mainly because she's graduated and busy with her job and life (which isn't happy because of this horrible condition. The consultant said because of the compensatory curve her hips and shoulders were leave, which was good. But she has a rotation too. And is now reporting pain. I think RNOH is the way to go.