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Thread: Scoliosis SOS Clinic, Suffolk, Ipswich

  1. #61
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    Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

    Hello everyone and thanks a lot for all your speedy replies. I've never spoken to anyone about it before or posted on a forum!

    I did actually go back (after many years of nothing!) to the Royal National Orthopaedic Hospital in London, Bolsover street a couple of years ago after finally getting a referral from my GP and because I had started to feel more pain and difficulty. During my childhood and teens that was where I had gone once a year for a check up. I did not see the 'main guy' there - the consultant that does the surgery that is, but another doctor and he just had a look and basically told me i'm ok and sent me off. I mentioned the scoliosis sos clinic as I had come across it then and he told me that he had heard of it and thought it wasn't worth it and overpriced. So I forgot about it until I went for the consultation the other day to find out for myself. (I am a bit annoyed though as a kid that I didn't get braces or more advice.) At the sos clinic they did tell me some more info about my back that I didn't know - they do a contour plot of your back from a photograph, they said the rotation was 8 degrees and some other measurements that I don't really understand.

    Are there any scoliosis specialists anyone recommends? I think I will go back to my GP and ask to see another specialist doctor perhaps and see if they can get me some physio/alexander technique on the NHS? Or does anyone know a good alex technician in london? I've started yoga and pilates which helps but obviously they are general exercises. I am sure it is because of the scoliosis I also have so many knots on the trapezius', at the moment I feel like I need some support around the part that sticks out on my back, obviously I also have one rib more out than another and hip.

    Thanks for your help again and I will take in to account what you have all said.

  2. #62
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    Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

    Braces are generally only prescribed once a curve reaches 20 degrees, though there are lots of people who think that treatment should be started before then. It's difficult really as braces are hard to tolerate, and they are usually designed just to hold your curves rather than correct them permanently, with the goal being to prevent the curve progressing to 40 degrees (which is when surgery starts to be thought about).

    If you get referred back to a scoliosis surgeon, do ask them if they can recommend to your GP that you get some physio or pain management on the NHS (there are special pain management clinics which you can be referred to; they can offer more options than the GPs can). The consultants themselves are mostly concerned with monitoring kids with scoliosis and doing surgeries, so if you're an adult with a subsurgical curve there is little they themselves can do. However, your GP will probably be more willing to refer you for physio or to a pain clinic with a letter from the consultant.

    I had myofascial release work done by an NHS physio, specifically for spasmed-up trapezius muscles (quite a few of us here have that problem). It works well, though you need to keep up with stretching exercises to strengthen the muscle and keep it supple once it has been released. There are also certain drugs that work as gentle muscle relaxants, which a pain clinic may be able to prescribe.

    Carolad is the member who you should speak to about the Alexander Technique, as she's had success with this. I'll let her know about this thread
    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.

  3. #63
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    Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

    Oh thanks toni for this info, I will definitely do what you suggest and speak to my GP, You have made me understand a lot more about scoliosis than anyone else! I will get in touch with Carold also. And if anyone knows anymore about the scoliosis sos pls let me know.

    Ciao

  4. #64
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    Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

    I thought I heard my name mentioned - glad it wasn't anything bad

    Hi Sarajs - really sorry to hear of the problems you've been having, and even more upsetting when you feel you have no-one to turn to

    As some of the others have said, I've found the Alexander Technique to be really helpful, both in improving my posture, and in helping me deal with the pain. My curves aren't bad enough for surgery so my GP just packed me off with a load of painkillers and that was the end of the story as far as he was concerned. I was determined to try to do something to help myself so started looking into alternative therapies.

    The Alexander Technique was recommended to me by a friend who has the same condition - she also found it to be very beneficial. I've been doing it for over 2 years now and its probably the single most beneficial thing I've done to manage my condition (I also take prescription painkillers and have regular physio).

    But because of AT, I have completely changed how I stand, sit and move so am now much more balanced. I've actually gained an inch in height because I stand taller and don't compress my spine the way I used to - so this is factual proof that it works!

    Unfortunately, its not available on the NHS and its not cheap - I pay 40 for an hour's session. It takes time too, it certainly isn't a quick fix - and you need to be committed to it and think about it ALL THE TIME, at least initially. There is no point going to the lessons and then just reverting back to all your old bad habits. Of course in time, you will 'unlearn' your bad habits and develop new good ones so it does start to come more naturally after a while. But its not something you just learn for a year and then have 'got it' - its really a lifetime commitment to follow Alexander Technique principles.

    The basic idea behind AT is that we all (non-scolis too) develop bad postural habits and tense muscles without even realising we are doing it. And it is these tense muscles which pull us out of alignment and then create all sorts of problems. So by learning to 'let go' of the muscle tension, your body will naturally come into a more balanced alignment. This is the difficult bit in a way, because you are not consciously DOING anything - its more a case of learning NOT to do things, if that makes sense? I know it sounds a bit airy-fairy, but I promise you it works!

    An additional side-effect I've found is that it has increased my general wellbeing and makes me feel more in control of my situation - I believe this is quite a common effect, it definitely has an effect on your mind as well as your body.

    If you want more information, or want to find an AT teacher in your area, check out this site:
    http://www.stat.org.uk/

    And this is a good article on AT and scoliosis:
    http://www.stat.org.uk/pages/kyphoscoliosisstory.htm

    If you have any questions, or want more information, please don't hesitate to ask on here or send me a PM - I'm only too happy to go on about it, as everyone else on here knows!!

    Take care and let us know how you get on x

  5. #65
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    Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

    Quote Originally Posted by carolad View Post
    I thought I heard my name mentioned - glad it wasn't anything bad

    Carol, Carol, Carol, i'm wounded how could you even think bad thoughts, you destroyed my illusion

    lol

    Dr Marky
    Latitude: 54 57' 34" N Longitude: 1 25' 16" W


    Mark's a groovin an a movin

  6. #66
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    Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

    Quote Originally Posted by mark View Post
    Carol, Carol, Carol, i'm wounded how could you even think bad thoughts, you destroyed my illusion

    lol

    Dr Marky
    LOL...of course I wouldn't think bad thoughts...maybe just a wee bit naughty though ;-)

  7. #67
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    Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

    Phewwwwwwwwwwwwwwwww, hows Carol tonight i hope your not in too much pain, i know being on your feet all day can be hell for your back
    Latitude: 54 57' 34" N Longitude: 1 25' 16" W


    Mark's a groovin an a movin

  8. #68
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    Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

    HI Carolad, thanks so much for your advice. I'm definitely willing to the put the hours in and commit to AT if it's going to make a difference but yes I do see it's pricey. I will do some research but at the moment I'd prefer to spend the money on AT rather than at the Scoliosis SOS centre. So I'll see how it goes. So what is your degree of curve etc? You can PM me if you like? I'd like to know if you are similar to me?

  9. #69
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    Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

    Quote Originally Posted by Sarajs View Post
    HI Carolad, thanks so much for your advice. I'm definitely willing to the put the hours in and commit to AT if it's going to make a difference but yes I do see it's pricey. I will do some research but at the moment I'd prefer to spend the money on AT rather than at the Scoliosis SOS centre. So I'll see how it goes. So what is your degree of curve etc? You can PM me if you like? I'd like to know if you are similar to me?
    Oh thats great, its definitely worth a go - and I really hope you will find it as helpful as I have One of the things I really liked about the Alexander Technique is that teachers don't make wild claims about curing your problem. In fact, improvements in posture and pain relief are almost a side effect of following AT principles - its not seen as the primary purpose. I'm always wary of places like the SOS centre that make all these claims - sure if it really was that easy to fix the problem, it would be much more widespread and scoliosis would be a thing of the past?

    I've never actually seen a Scoliosis Consultant (usual story of being fobbed off by doctors...) so I don't have an exact measurement. I've had x rays taken though and its been estimated to be around 35ish (very vague!) Anyhow, its well below the levels that would be considered for surgery, so its just a case of learn to live with it...

    I'm guessing you've been told the same thing, so ANYTHING you can do to help yourself has to be a good thing. I think even the fact that you are doing something to help yourself is empowering - it gives you back some control over your life.

    Any other questions, just ask!

  10. #70
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    Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

    Quote Originally Posted by mark View Post
    Phewwwwwwwwwwwwwwwww, hows Carol tonight i hope your not in too much pain, i know being on your feet all day can be hell for your back
    Hi Mark

    Strangely I find sitting gives me more bother than standing - I find if I vary my position frequently I can cope better. So it looks like I'm a very nervous person because I don't sit still and just continually pace up and down - luckily my colleagues are used to me!!

  11. #71
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    Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

    Hi Carold, you've made me really excited about doing AT now! Just the thought of these 'side effects' makes me feel better. I'll let you know the results. Interesting to hear also about how you cope with your back too. Thanks again, Sara

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    Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

    Quote Originally Posted by Sarajs View Post
    Hi Carold, you've made me really excited about doing AT now! Just the thought of these 'side effects' makes me feel better. I'll let you know the results. Interesting to hear also about how you cope with your back too. Thanks again, Sara
    Oh good, I'm really pleased! I just know it has helped me a lot and I really want other people to be able to benefit too! Just do bear in mind what I said about it not being a quick fix - so please don't get disheartened if it seems like nothing is changing initially - I promise you, you WILL feel the benefit if you stick with it.

    I'll be really interested to hear how you get on, so please come back and tell us! And don't hesitate to get in contact with me if you have any questions or want more information.

  13. #73
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    Thumbs up Re: Scoliosis SOS Clinic, Suffolk, Ipswich

    Dear Sarajs,
    sorry to hear you have problems.
    I am on my third week at the Scoliosis SOS London and I can tell you that it is very useful.
    I have found out that I can do things that I thought I couldn't and also I have no pain and I have improve my posture, I had pain in sitting and standing. Although I have the fusion and a lot of my muscles were collapsed now I work my muscles and I feel much better. I think that it is different from any other physiotherapy because you work a lot of hours and you learn the exercises that you have to continue them at home 30 minutes a day.
    Maybe you came for a consultation the time I was there and I saw you.
    You can ask me more if you want to.
    Stavroula

  14. #74
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    Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

    Quote Originally Posted by stavroula View Post
    Dear Sarajs,
    sorry to hear you have problems.
    I am on my third week at the Scoliosis SOS London and I can tell you that it is very useful.
    I have found out that I can do things that I thought I couldn't and also I have no pain and I have improve my posture, I had pain in sitting and standing. Although I have the fusion and a lot of my muscles were collapsed now I work my muscles and I feel much better. I think that it is different from any other physiotherapy because you work a lot of hours and you learn the exercises that you have to continue them at home 30 minutes a day.
    Maybe you came for a consultation the time I was there and I saw you.
    You can ask me more if you want to.
    Stavroula
    a bit silly question, but what type of exercise is it and what do you have to do
    went there in june or july but can't afford it yet
    I Have A Dream

  15. #75
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    Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

    Hello, sorry only just saw this message, do you have a number stavroula? So I could ask you some specific questions.

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