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Thread: Anyone with experience of bracing?

  1. #1
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    Default Anyone with experience of bracing?

    Hi my daughter aged 13 has just been referred to the Stanmore under Mr Lehovsky, we are due to see him on 20th March. The doctor that referred her said that due to the increase in her curves ( last measured in December at 33 degrees) she will need to be braced within the next few months.
    I wonder if anyone can offer any advice regards bracing and what to expect at her first appointment with Mr Lehovsky. Also if anyone can suggest questions that would be useful to ask at this appointment. My daughter stands very straight at the moment and her back muscles are pretty strong due to her training between 5 and 8 hours per week in gymnastics. Does anyone know if it will be ok for her to continue with this as she would be extremely upset if she had to give it up as a result.
    Any help or advice would be great, thanks.

  2. #2
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    Default Re: Anyone with experience of bracing?

    Hi,
    I have the same questions to ask, also I don't know which is the best brace for my daughter. I also appreciate any help
    Thank you

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    Default Re: Anyone with experience of bracing?

    Hi, it's been many years since I was braced so I'll wait for other people to chime in with more up-to-date info, but please don't worry about your daughter's gymnastics Karis. She will almost certainly be able to continue with this and will be allowed to remove the brace whilst doing so. Having a strong back is a very very good thing

    As to which brace is best - there are many, many different opinions on this. I would simply advise that you follow the advice of your daughter's consultant. There are a handful of charlatans out there who sell braces privately, so be careful of this. The "standard" type of brace prescribed in the UK is a custom-made TLSO; this is a hard-plastic corset-style brace. It is similar to the Boston Brace, which is also commonly prescribed; the difference between the two is that the Boston is constructed from prefabricated parts rather than being custom-made from a plaster cast of your child's body.

    You may also hear about the Spinecor brace, which only a few NHS hospitals provide; this is made from fabric bands so it is more comfortable to wear and allows for more movement, but the jury is out as to whether or not it is an effective brace.

    The Milwaukee brace is still used very occasionally for children with very high thoracic curves. Modern designs are much nicer than the old style Milwaukees but this is still seen as a tough brace to tolerate and so it has fallen out of favour with most consultants.
    37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.

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    Default Re: Anyone with experience of bracing?

    Is it better to take measurements for brace by casting or by laser?

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    Default Re: Anyone with experience of bracing?

    I have no experience of taking measurements by laser. It sounds wonderfully high-tech but making a brace directly from a plaster mould of the patient's body usually results in a very well-fitting brace.
    37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.

  6. #6
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    Default Re: Anyone with experience of bracing?

    My son Nicol has had a brace for 2 years and has continued with his karate during this time, even competing in a world championship overseas, he just takes it off to train. The first two weeks were really bad tbh, but after that, once he was in it for 20 hours, he adapted to it very quickly as it helped so much with his pain. We have been on holiday with it too. With his clothes on, you can't see it, especially if he is wearing school uniform. It has been a positive experience for him as it has allowed him to grow before having his operation (he has a growth deficiency problem), which was a major issue for him. His was done with a plaster cast and he is on to his second one. Hope this helps. XX

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    Default Re: Anyone with experience of bracing?

    Thanks for your reply its nice to hear of a positive about bracing, my daughter is very concerned about the being able to see it part and worried about being teased at school, so its nice to hear its not to noticable.
    We are going to the Stanmore to see Mr Lehovsky in the morning so will hopefully know a lot more then as to the next plan of action.
    Her consultant at the hospital where she was being monitored said he felt a brace was now necessary, that was 3 months ago, so it will be helpful to see if the curve has increased in the last 3 months, as the previous 6 months it had increased by 8* hopefully it hasn't increased to much.
    Has the brace helped to stabilize your sons curve or at least slowed it down?
    I wish you both well and hope that his surgery will help him, and with a quick recovery.

  8. #8
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    Default Re: Anyone with experience of bracing?

    Good luck with your appointment. The brace has definitely slowed down the curve's progression, which has been a good thing for him, and apart from the first two weeks, he has coped incredibly well with it. No-one has made fun of him, and it has actually had its hilarious moments - he was on a school trip in Germany on a roller coaster and the attendant was trying to get his attention and tapped him on his back, feeling the brace. He jumped back in shock - he though Nicol was a suicide bomber! It really amused his friends. Poor attendant! The language barrier didn't help either, lol. He's been allowed to leave it off for important things, such as weddings, and also for longer when on holiday, as they stressed the important thing was to live your life as normally as possible. And as we live in Scotland, it has kept him warm! XX

  9. #9
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    Default Re: Anyone with experience of bracing?

    Thanks for the advice. Unfortunately the appointment didn't go so well and we got the shock news that my daughter has a break in the lower part of her back and will require surgery to correct it using a metal plate. Mr Lehovsky said it was the only option and that it couldn't heal any other way. We have to have another type of scan to look at bones in more detail and see him again in 3 months.
    He will still brace her but can't do this until she's had the corrective surgery for the break which he says needs to be done sooner rather than later, and that she will not be able to do any sport for 6 months following surgery. This has come as a huge blow as she is very sporty and has chosen PE as an option at school. We were advised that she may have to rethink this.

    She is adamant that she will still take it and I have a meeting with the school next week to discuss if this is still likely to be a possibility as she will have to refrain from the practical side of lessons for up to 6 months.
    Mr Lehovsky is hopeful that the operation may offer some improvement in curve and may help to stop its progression as he is sure that the break has added to the increase in curve, but not the cause of it.
    I'm now worried that whilst we wait it might be getting worse, I hope not to a degree where they can't brace it.
    Mr Lehovsky seemed very positive and said he will be bracing her once the break is dealt with, so just have to wait and see now I guess.

  10. #10
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    Default Re: Anyone with experience of bracing?

    I am so sorry to hear your news, what a terrible shock for you all. Your daughter seems to have a fantastic positive attitude, so I really hope that she is able to continue with gymnastics and sport in general after she has healed. My own daughter, although she has no scoliosis fortunately, is a competitive highland dancer and over the years has had to keep stopping due to injuries which have kept her away from dancing for long periods (longest was about 9 months) but nothing obviously as serious as this. However I really do understand how devastating it is when they have to stop doing something they love and are good at. It was very hurtful for her when well meaning people told her that there were other things she could do, when her heart was set on dancing. However, the only positive is that she now has an incredibly strong character which is standing her in good stead now she is at uni, and she is still dancing at 19! I hope this happens for your daughter too. Nicol fortunately, has been able to keep training at karate, although he can't manage a whole class these days, so they let him do what he can which is so important as he was told that the more supple his back, the better correction he would get when he has his op. Thinking of you and sending hugs to you all. XX

  11. #11
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    Default Re: Anyone with experience of bracing?

    Hi, thanks for your encouraging words. I have had a meeting with my daughters school PE department today, and the great news is that they have said that they know how important the PE option is to my daughter and that she is very talented and that they have no problem in allowing her to take the GCSE option and that if necessary they have enough evidence already of her commitment and skills that they could use this information to get her through the practical side of the qualification and they will give her the criteria for filming her doing her gymnastics before she has surgery so if necessary she can take part in practical lessons in a different way and concentrate on the academic side of the qualification and they have every confidence that she will pass with no problems, so a huge sigh of relief for her, she is very pleased about it and now all she's worried about is having to have a canular put in! not the operation as she said well I won't be aware of it I'll be asleep to I'm not worried about that.
    Several years ago she had to undergo surgery for appendix and then a second operation due to complications to remove an abscess and she hated the needles for the numerous canulars she had to have to the point her veins were collapsing. So that's all she's worried about at the moment and the fact that when she has her CT scan they will have to inject a dye into her spine.
    I have spoken to Mr Lehovsky's secretary to clarify a few points and she has kindly offered to send me a copy of the notes in the post, which will also be helpful for the school and her gym coaches. Also said I can call and speak to Mr Lehovsky's assistant (Charlie) on Friday if I have any further queries, which is great as now I am full of questions and it nice to know I can speak with someone who can answer them.

    It's good to hear that your son's Karate instructor's are understanding about his needing to continue as much as possible, I think it's so important for them to carry on as normal as much as possible. How soon will he have his operation?
    Take care and thanks again for the support its much appreciated.

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