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Scoliosis SOS Clinic

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valory
valory

Hi All,

Does anyone with scoliosis/kyphoscoliosis know anything about, or tried, the non-surgical treatment for scoliosis and postural correction at the Scoliosis SOS Clinic in London?  I'm giving this some serious consideration but it's expensive and is a huge commitment.  Just thought it would be useful if there was anyone out there who had knowledge of it/tried it.

Curvey

0 likes, 83 replies

83 Replies

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  • sokuwan
    sokuwan valory

    Posted

    Hi Mandy,

    Thanks so much for that info.  I've just stumbled across this really but it sounds great.  I live in Yorkshire but my brother's near Tetbury so it's a possiblity.  Did you do 4 hours a day for a week? How much did it cost? Glad you think it was worth it.  How are you finding the daily exercise?

    • Stevie13
      Stevie13 sokuwan

      Posted

      Hi, the initial consultation was £50, the week cost £600.

      The wall bars are the most expensive thing to buy, with the mats etc , it's around £300.i think you can get bars that you put across a doorframe at different heights if wallboard are too expensive , hope that helps

  • Armorer
    Armorer valory

    Posted

    I'd love to know how those of you who contribute to this discussion are getting on now. Have your efforts with Schroth exercises in Tetbury or at the SOS clinic in London paid off? Are you continuing with the exercises? I've just seen an orthopod about my scoliosis and he says that some of his patients rate Schroth exercises because they help with pain, but he doesn't think that they could prevent further deterioration in the curve in my spine (which Scoliosis SOS suggests would be possible in my case - I'm 59 and my scoliosis is now about 60 degrees). I manage to keep pretty flexible and am very active, do Pilates and Alexander Technique, lots of walking and swim, and pain is not a big issue right now - but I am of course wondering about the future!  Is Schroth really sufficiently different and better than these other kinds of bodywork, I wonder, to be worth the outlay?  Hope to hear your thoughts!
    • valory
      valory Armorer

      Posted

      Hi Armorer

      Sorry for the delay in answering your post, I've been away and ignoring emails/posts etc.

      I first visited Tetbury in January this year and although I found the course quite difficult mentally and physically I personally feel it was worth the time, effort and money although, having said that,  I have not put in the required time on a daily basis to make a significant difference to my curves.  However, even with the amount of exercising I am doing it has helped a great deal with the pain issue and I also feel stronger and more able to stand upright for the day.  The exercises clearly are strengthing the muscles in a way so as to be able to support the spine more effectively.  It has made small differences in my daily life which don't seem significant but they are, such as lifting a kettle full of water, being able to blow dry my hair and not have to stop every two minutes, I can mash the potatoes again, make the bed etc. etc, small things, but they have made a big difference for me.   

      In my case I'm 65 and my spine is very rigid due to osteoporosis, and probably age, and until a couple of years ago I always kept everyting in check with yoga, swimming and walking but other health issues stopped me from continuing these exercises and kyphoscoliosis soon deteroriated  (curves 40/40 to 60/70) which is why I started Schroth. He has suggested that I will not see a huge change in my curve  as it is so rigid but the object now  is to prevent it from deteriorating further.  So, if you are very active and not in any pain you've probably got a regime that's working reasonaly well but Schroth exercises are specifically tailored to the individual and as far as I can see/understand it can only be of benefit to you in the long run.  

      I'm not clear from you post whether or not you have actually been to see Scoliosis SOS or not but it might be worth an initial consultation with them, or someone trained in the Schroth method that's nearer to where you live just to get another opinion.  You'd have to pay a consultation fee but there's no obligation to sign up for it.

      In short, it's been beneficial for me, I'n glad I've done it and I'll continue with the programme and I'd recommend it to anyone.

      Best wishes

      Curvey

       

  • Armorer
    Armorer valory

    Posted

    Dear Curvey, please don't apologise for delaying in getting in touch - look how long it has taken me to get back to you! I really appreciate your detailed response - and it's great that the exercises have helped so much with the pain. I also have just entered osteoporosis territory - though it has taken two years to get a good answer on quite how badly affected I am, as the DEXA scans are unreliable for people with scoliosis. I've been irritated by the rheumatologists being prepared to prescribe on the basis of unreliable scans, but seeing the team under Sean Molloy at the Royal national orthopaedic hospital has helped me get to the bottom of it - they did a CT scan and an MRI scan of my back and showed me that the L3 vertebra - usually a good indicator or osteoporosis - is in my case unreliable, as it's hidden by my ribs, and that I should go on the L4 vertebra instead, which isn't usually used. This was a bit of a breakthrough: my L4 DEXA scan result is reasonable, whereas the L3 result has always been much higher than the others. Anyway, this is an aside, but I thought it might be helpful! It's quite complex when we have both scoliosis and osteoporosis... Back to Schroth! It's interesting that you were able to keep on top of the pain with yoga etc before other health issues intervened, as I am managing. And that your kyposis/scoliosis deteriorated. I'm not surprised  - I notice that I do less well even if I don't exercise or do Alexander technique for a couple of weeks. I am daunted by the cost of the SOS treatment month - but I think I'll keep it in reserve. But thanks again for your thoughtful response, and I do hope things continue to go well for you! Best wishes, Armorer
  • nicky76836
    nicky76836 valory

    Posted

    Hey!! 

    My 9 year old daughter was diagnosed with scoliosis a year and a half ago. Up till last month her curve was steady at 20 and 15 degrees so Doc said wait and see, but last month's xray shows it's progressed, so it's getting worse. Doc says come back in Janaury to start with a brace.

    My daughter does yoga and swimming and we put wall bars in the house and monkey bars outside. She is an energetic little mouse and she knows a strong back is good for her, so getting her to do exercise is not an issue. 

    I'm REALLY intersted in the Scroth Method. I'm giving real thought to either the SOS Scoliosis Clinic or the osteopath in Telford.

    I'd really like to know if anyone has any experience of the Scroth Method with young children.

    Thank you!!!

    Nicky

     

    • Stevie13
      Stevie13 nicky76836

      Posted

      Hi

      My daughter has just turned 11, we went to see an osteopath in February, he spent a week with my daughter, 4 hours each day, teaching her the excercises she needed.

      She was also fitted with an RSC brace in March, she is doing both as well as core excercises and swimming. Her follow up appointment was in June, her curve had not progressed , it is still early days though, her next X-ray is in December. I think we did four days with him, the SOS clinic was two weeks or four weeks and much more costly, I think you will get the same results with an osteopath , it just takes a bit longer. Schroth is a fairly difficult concept to understand for kids , we are going in December for a refresher, just a couple of hours. Hope that helps , anything else , please ask

    • nicky76836
      nicky76836 Stevie13

      Posted

      Hi,

      Thank you so much for writing.

      It's so helpful to hear that you are in a similar position and to hear your experience. It's the first time I've heard any feedback of a parent of a child with Scoliosis. 

      I'm really thinking the best for us would be to see an osteopath. The expense matters of course, but I think a week may well be enough for my 9 year old.I like the idea of being able to go back for a refresher too.

      Has your daughter adjusted to the brace okay? Does she wear it most of the day?  Has her scoliosis progressed since diagnosis or has it stayed the same?  Sorry for the questions - it's just so good to talk to to someone in a similar position to ourselves. I feel afraid of the years of growth my girl has ahead of her. Does your daughter have any pain from her scoliosis? Mine doesn't. 

      Thank you so much again for answering.  It reall really helps to hear your experience.

      Nicky

    • Stevie13
      Stevie13 nicky76836

      Posted

      Hi

      She has no pain and wears her brace between 20-22 hours a day, she did have to have it adjusted a few times. Her scoliosis had not progressed at her last X-ray in June which was good. Her next X-ray is in December, I'll be honest , it has been an emotional roller coaster for her, a lot tears every now and then about the exercises. She still has a lot of growing to do , so the next few years are going to be a worrying time. Is your daughter going to wear a brace?

      Anything else , please ask. It is great to talk to someone in a similar position, unfortunately we feel that we have not had the best advise through the NHS.

    • nicky76836
      nicky76836 Stevie13

      Posted

      Hey,

      Thank you again for taking the time - it's so good to talk to someone with the same challenge!!!

      Yes, my girl will have a brace in January. Doc says nighttime to start with, but I expect it to go to daytime soon after. Does your daughter find wearing the brace easier now that at the start?  i totally hear that all the exercises and everything is an emotional rollercoaster. It's such a big thing for a child to take on board. For the parents too..

       

      It is postive your daughter's curve hasn't progressed. I kind of think each day that goes by where the curve doesn't progress is a mini milestone. It seems like the brace is doing its job of holding the curve too which is encouraging.

      I live in France so can't compare experiences with NHS. On the plus side for UK medics, at least there are Scroth practitioners - there are none here. 

      Do you know the angles on the Cobb scale of your daughter's curve? We've fouind that between what the xray clinic say and what the specialist says, there's a difference of around 5 degrees, which is alot.  

      In all I've read the thing I see most is that it's good to strengthen the back,  ( especially with brace wearing as the back muscles don't work so much ) so in seeking out good physiotherapy like Scroth and encouraging helpful sport like swimming I guess we are doing what we can.  My doc says yoga's really good too as it keeps the back flexible. 

      So good to talk to you.

      Nicky

       

    • Stevie13
      Stevie13 nicky76836

      Posted

      Hi

      It was a bit of a challenge to start with, wearing the brace at night was not the problem, it was wearing it during the day and at school without any of her classmates finding out. She didn't want them to find out.

      I think the brace and Schroth are a good combination, do you know what type of brace she will be getting?

      I think exercise is definately good for her back and core .

    • nicky76836
      nicky76836 Stevie13

      Posted

      Hey,

      We don't know yet what kind of brace it will be, though we're quite sure it'll be an improvement on the Milwaulkee Brace the first doc we saw wanted to put her in. The Milwaulkee Brace is an old fashioned brace and seeing it scared me into getting a second opinion. Fortunately our doc now is far more modern and she told us the braces she uses are easier to wear.   Couldn't be harder....    .I imagine though that my daughter will react in a similar way to your own little girl and try to hide it. It's understandable. It's tough being a kid. 

      I too think brace and Scroth are good together. I feel happy that the Scroth Method doesn't claim to eliminate the need for bracing as some of the dodgy French physiotherapy techniques claim to. I feel I can trust Scroth as a real help alongside classic bracing methods.

      Maybe - if you don't mind- we could exchange email adresses via the private messages on the forum?  

      Nicky

  • Hepclan
    Hepclan valory

    Posted

    Hello.  My 15 year old daughter was diagnosed with a double curve about 6 weeks ago.  She is now wearing a Boston brace for approx 23 hours/day.  She is booked into a 4 day session at the London Scoliosis SOS clinic next week.  The clinic is not cheap but I do have a friend with a daughter the same age who has attended for 2 weeks.  They are pleased overall with the treatment despite the costs.  Will keep you posted. Regards. 
    • louise12837
      louise12837 Hepclan

      Posted

      Hi Hepclan,

      I was wondering how your daughter got on at Scoliosis SOS? Did she just do the one 4 day session? 

      My daughter is 17 and has scoliosis and we were thinking about going and whether it is worth the cost? 

      Many thanks,

      Lou

    • Hepclan
      Hepclan louise12837

      Posted

      Hello

      The 4 days at Scoliosis SOS were fine - trekking into London each day was tiring but without incident fortunately. Our daughter found the whole experience tiring and not very exciting but not painful. We had one physio for the whole week which worked well. There was no heavy sell to book again or indeed to buy equipment and we bought the basics.

      Difficulty has been in incorporating a 40 minute exercise session into her daily routine - and do far we are largely unsuccessful. She manages approx 10 -15 mins most days which is disappointing and makes me feel very guilty.

      However I've found a local physiotherapist who is willing to essentially supervise her doing the full 40 mins session . We shall try this on a weekly basis for a few weeks in the hope that this will provide the impetus and motivation to embed the exercise regime - fingers crossed!

      Next xray scheduled for March so am hoping that will show an improvement, or at least no deterioration.

      Hope this helps.

    • louise12837
      louise12837 Hepclan

      Posted

      Hi Hepclan, 

      Many thanks tor your reply. Hope you don't mind a few more questions. How many hours a day was it? What type of exercises are they? Is it breathing/schroth type exercises or are they physical? What type of equipment did you buy? It is interesting that a local physio has the training to be able to supervise your daughter as I thought Scoliosis SOS methods were unique to them?

      Sorry to to be so questioning but I am really torn as to whether to pursue this route or not and other reviews of the clinic have been not so good.

      Hope things go well for you daughter ,

      best wishes,

      Lou

    • Hepclan
      Hepclan louise12837

      Posted

      Hello

      The clinic day was 10am to 5pm . The exercises were a mixture of relatively standard core exercises along with the breathing and shroth exercises the clinic promotes. But essentially nothing outlandish and therefore nothing that another physio couldn't help her with now.

      We bought elastic bands for resistance from the clinic. We then bought an inflatable gym ball from a sports shop and we already had a chin up bar (from when she used to do gymnastics ). These are the only pieces of equipment she needs/uses.

      Thinking back we do not regret the time at the clinic despite the cost and time and effort. However we have not booked another session (Feb half term was a possibility ) and won't do so unless/until we have cracked the daily exercise regime.

      Regards

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