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
I have scoliosis (I'm 45) and spent a month at the Scoliosis SOS clinic when it was still in Suffolk in 2008
The education that you receive about your scoliosis and how to protect it is invaluable.
The exercises did improve the appearance of my back and my posture but I found them painful - I persevered for 6 months going the exercises everyday but still in pain and eventually I tore an intercostal and had to stop.
The equipment does take up a lot of suave so you need to be aware of that as you need wall bars at home.
I would say if you're younger and have a not too severe scoliosis then this is a must step to try if you can afford it. Some primary care trusts will fund your treatment, but mine did not.
You need to commit financially, time wise and space wise but if you can it is beneficial and can help.
Zoey
Hi Zoey,
Thank you for your reply. It's very informative. No one mentioned equipment when I was speaking with them! I'm guessing that will be another financial outlay as well as the course itself and then accommodation while staying in London? Can you sell the equipment back to them on on to someone else?
I'm 64 but am assured they can still help even though I now have osteoporosis as well which is what has made my kyphoscoliosis so much worse recently.
I've also been in touch with an osteopath in Tetbury who teaches the Scroth method as well. He hasn't mentioned equipment yet either but I guess he will when I see him. Not sure what I'm going to do yet but feel I need to take some control before it controls me!
Take care and thanks again for the reply.
Curvey
If I remember correctly the SOS clinic price included the equipment.
They teach you how to protect your back, things to avoid doing and exercises to do after something asymmetrical like hoovering etc. to counter the effect on the spine.
It's a lot of postural corrections if you like I can send you my before and after photos.
As I say though you need to commit to exercises everyday forever to keep up the benefits/ corrections. I was given a 30 minute a day programme to follow.
Good luck.
Zoey
That's really helpful Zoey, thanks.
Photos would be brilliant or just the change in degree of the curves from "before" and "after" to give me an idea of what I might be able to achieve, although i appreciate we're all different, I'm considerably older and it will depend on how much effort I put in! i have recently gone from an evenly balanced 40 degree on both upper and lower curves to 60 on the upper and 70 on the lower. Not good!!
How are you now that you're not doing the exercises?
Curvey
Email me and i'll send you the photos.
I am far better able to protect myself because of the knowledge I gained. I still maintain better posture and try to avoid bending, lifting (even a kettle) and twisting which does seem to help. I am sure my curve will progress with age, but at the moment I'm unable to work and my choices is total spinal fusion or see how I go.
Before the SOS clinic I was in a terrible state - so much pain. It is more bearable now.
I wouldn't go back, but I'm glad I went!
The corrections are not necessarily of the spine more postural at our later stage I think if we'd gine as teenagers it would have been far better. But didn't have a UK clinic then. It's all based on the Schroth method.
If you can get your primary care trust to fund it or if you can afford it I'd recommend it.
Zoey
Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service . You can upload images directly to this site in a reply if this helps, see second link below.
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
http://patient.uservoice.com/knowledgebase/articles/402861-how-do-i-add-an-image-to-my-post
Hi Zoey,
You'll see the Moderator's comments about emails and photos. I'll send PM to you.
Curvey
Hi Curvey
I have just joined this forum and seen your message - I am in the same position,looking at the clinic and wondering if it's worth the money. I've decided to go for the initial consultaiton at £75 (next week) and see what they have to say - the price they quoted me was £3675 so it's a huge outlay. On the other hand, I have spent a fortune over the years on physio, Alexander Technique etc. From reading up on chat forums, it seems that the clinic may benefit those with mild curves than more serious ones. Mine is mild but it causes anything from discomfort to quite strong pain just about every day - I can't remember what it feels like to be pain-free. Now I'm 49 it's starting to get worse, my hip often gives way and my shoulder is starting to hurt - I thought the consultation might be worth doing just to see if these issues are linked to the curve, my physio who I see for monthly maintenance, thinks they are.
Let me know what you decide to do and I'll let you know if the consultation seemed worthwhile.
Mandy
Hi Mandy,
The London Clinic quoted me £3,450 for the treatment but that was probably four months ago, plus the £75 for the consultation. Then there was £1,976 for accommodation if I wanted to use their flat, plus food and train fares home and back on weekends. That's the best part of £6,000 plus whatever equipment is required. I researched further and decided to try an osteopath in Tetbury who teaches the Schroth Method. I can drive there and back on a daily basis so the whole thing is much better for me and less expensive. He was trained in Germany and became interested in this as his son has scoliosis. He charges £600 for a course of treatment which is 4 hours a day for a week and then regular follow up appointments to check on your progress to make sure you are continuing to do the exercises correctly. From what I undersatnd there is no follow up from the London SOS Clinic.
The difference between the London SOS Clinic and this is the length of the course which means after 4 weeks of 5hrs a day you will see a noticable difference, whereas with this shortened course (the exercises are the same) it will take longer to see the progress but the final outcome will be the same it will just take a little longer. Either way for this to have a lasting effect you will have to do the exercises for at least half an hour a day for the rest of your life.
I actually started the programme this week. Today was day three. I'm finding it difficult to take it all in but with time and practice I'm sure it will all get easier. It's quite intense. I'll let you know how the rest of the week goes and I'll be really interested in how you get on and what you decide to do.
Take care
Curvey
Curvey
That's helpful - it is such a big outlay and also time - I have two teenage boys who need ferrying around and taking a month out will not be easy. I like your idea much better. Do let me know how you feel at the end of the week and best of luck with it xx
I've just been looking this up and it sounds like a great compromise - it would take me 2 hours to drive there but then it takes an hour and a half to get into London by train and a week of family disruption would be a lot easier than a month. Is it the guy from the website who is doing the exercises with you? I wonder if you would mind if we had a chat at the weekend when you have done the week ? It's extremely difficult to find real tesimonials on line. I'd really appreciate it. I'm 50 this year and have been living with back pain and throwing money at it since my early 20s. I feel i need to take control now but equally don't want to waste time and money...has he said what kit you will need at home? THank you!
Mandy
Emis Moderator comment: I have removed the phone numbers as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service to exchange them. It is not a very good idea posting personal details like phone numbers on the open internet.
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
Hi Mandy,
No problem, am happy to speak to you over the weekend, however, you will see the Moderator;s comments. I didn't make a note of the numbers before they were removed. Please send PM with numbers and I'll ring over the weekend.
Curvey
Hi
I am thinking of taking my daughter to Tetbury , how did you get on with your treatment?
Hi Stevie,
I found the week quite a challenge both physically and mentally but definitely worth it and am looking forward to getting started on my exercise programme. There's quite bit of kit to purchase and I haven't got all mine together yet so haven't had a chance to practice properly.
I'm sure your daughter will benefit from the Schroth Programme. She's young and therefore supple and will find the exercises easier to perform than I do as my bones are pretty much set fast at 65! Your daughter is also more likely to pick up the instructions more quickly just because she's younger! It is a huge commitment though and the exercises must be done at least 5 days a week forever, so not something to be entered into lightly.
The real test will be to see how I'm getting on in six month's time.
Good luck and let me know if you decide to go ahead with this.
Curvey
Hi Curvey,
Just read this thread and wondered how you got on in Tetbury and since then. I am thinking of doing the same course so it woud be great to know how you found it and the follow up exercises. I'm 43 and have a 40 degree curve but would like to prevent it getting worse.
Hi Sokuwan
I've also done the Tetbury course - my curve is 35 degree and I'm 49. I found it very inspiring and empowering. However you have to commit to about 45 mins per day once you leave to continue the exercises. I've been doing the exercises for about 2 weeks now. I actually look straighter from the front but have altered my shape - developed more of a waist on one side and not the other. I had a physio come round today who confrimed she thinks I have been doing a few of the exercises wrong. They are very subtle so you will need to follow up afterwards. I am going back in June but I live a few hours away - the ideal would be to get some feedback every week for a while until you absolutley know what you're doing. Curvey is very helpful (she inspired me to try it) and I am also happy to have a chat to you over the phone about the prinicple of it and the course in practice if you want. I think it's worth a shot.
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?
Hi, my daughter is 10, it was a lot to take in for her, she is also wearing a brace, she has her next appointment in a couple of weeks time to see if her curve has progressed, He is a nice guy who seems to know what he is talking about, the breathing excercises are fairly complex, so I would advice you too to take notes. It certainly will help strengthen your muscles around your spine, hope that helps , anything else, please just ask
That's really helpful, thanks. How's your daughter managing the daily exercises (I'm a little worried about this, but can see the need for them).
Oh, I see I replied in the wrong place! Thanks for your info. How are you finding the daily exercise routine? And did you have to buy any equipment?
Thanks