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Canary
25th May 2007, 02:42 PM
Hi, I have just discovered your excellent site and have read several interesting comments regarding non-invasive treatments for Scoliosis. My son, Jon, was diagnosed in November last year when he was 14. At the end of April he completed 4 weeks of treatment at Scoliosis SOS, near Ipswich, and I thought it might be useful to add a few comments from a parent who has seen the Clinic and its treatment at first hand.
The exercises Jon has been taught, and now follows, are definitely Schroth exercises. The principle and practice of them are as described in the book 'Dreidimensionale Skoliosebehandlung' written by Christa Lehnert-Schroth. Unfortunately this book is only available in German or Spanish but has hundreds of illustrations and photographs (including before & after x rays).
Various measurements and tests were carried out before, during and after his treatment. There was a measurable improvement in lung function, a marked reduction in his Thoracolumbar prominence (measured by Scoliometer) and improvements were also shown on Formetric and Pedoscans. Jon's back looks so much better particularly as his muscular strength has greatly increased and his posture is also much improved.
The main benefit Jon has seen from the treatment is a reduction in his back pain. Whilst the NHS was happy to monitor Jon for surgery they were unable to offer help for the pain. Jon had stopped virtually all sports activity and was getting pain in every day normal life. Since following the programme he is virtually pain free, experiencing no pain in daily life and only a very occasional pain when playing sport 'flat out'.
As Jon was not an immediate candidate for surgery I am really happy we have found a way for him to pro-actively manage his Scoliosis and have given him a better quality of life as the pain is so reduced.
Jon will continue to be monitored by both Scoliosis SOS and his Orthopaedic Surgeon.
I could go on but fear I would be rambling! However, if anyone would like to know more about our experience I will happily try and answer any questions.

mark
25th May 2007, 03:19 PM
Hi Canary welcome to scoliosis support. I read with interest your post about scoliosis sos we have discussed the treatments offered by that paticular clinic. Heres a link to that discussion.

http://www.scoliosis-support.org/modules/i...&showtopic=4060 (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=4060)

I hope you enjoy the site and find it a useful resource

Please let us know more about the experiences you had

mark

tonibunny
25th May 2007, 03:46 PM
Hi Canary, welcome to SSO :welcome2:

Do you know by what degree (Cobb angle) Jon's curvature has reduced? It would be good to know this. We've been quite cynical about the correction of curves at Scoliosis SOS because they do not make use of x-rays (see Mark's post above), but you will hopefully be able to let us know - and hopefully post pictures of - the before and after effects of the treatment. So far we have only seen photographs, and these seem to show a change in musculature and sometimes a loss of balance of the head over the sacrum.

It's a shame that Jon could not have been seen at an NHS pain management clinic. I do think that physical therapies can be very useful for helping stabilise small curvatures (ie those that do not require surgery) and for pain, so I'm glad that this has worked for Jon. Good luck! Please keep us posted as to how he gets on :D

Canary
25th May 2007, 05:47 PM
In order to get Jon diagnosed as quickly as possible he saw an Orthopaedic surgeon privately in November 06 and was diagnosed with an angle of 30 degrees. This Consultant then arranged for Jon to be seen within the NHS in January. I am sure that during these 2 months his curve increased significantly as his prominence became far more obvious even to my untrained eye. The surgeon also said that his back did not match the xray but he did not want to perform another xray as he likes to keep them to a minimum and that he would see Jon in a further 3 months. In the meantime Jon completed his Schroth therapy. A week after finishing the treatment Jon was seen by the hospital and a further xray was taken. The surgeon was happy with the xray and did not even measure an angle. I therefore cannot state by what degree the Cobb angle changed as an xray was not taken at the time the curve was at its worse. I can however say with certainty that lung function improved and the Thoracolumbar prominence decreased.
Being a 3 dimensional deformity it is difficult to judge by xray alone the changes that have taken place to the rotation of the spine. I can only assume that there has been some de-rotation as the pain which was caused by the muscular imbalance has significantly improved. Jon's exercises work on de-rotation as well as elongation, he also does rotational breathing.

I can understand your concerns regarding the appearance on some of the photographs, I can only say that my sons head is balanced and that his hip alignment has been improved. I would comment that from meeting others also being treated I did not notice this as a problem when seeing them face to face.

When I decided to explore this line of treatment I researched it as much as I could but have to say information on it is pretty limited. I think it would really have helped to see the exercises in action, as once seen they make alot more sense as to how they work. Has anyone ever come across a film of them?

Thanks for your interest, never done this kind of thing before, must admit i wish I had known you were about when it was first diagnosed, that felt an incredibly lonely time.

GillyG
25th May 2007, 07:09 PM
Hi Canary :welcome:

This is really interesting. I too would love to see any photos/x-rays of your son, if you would be willing to post them. Am I correct in assuming that the main goal of the exercises he has been given is to balance the musculature that supports the spine? I have to admit to being one of the sceptics after looking at the 'before and after' photos on the scoliosis SOS website, as Toni mentioned, they seemed to be less balanced in the 'after' shots in some cases.

I'm really pleased he has been given some respite from his pain and has managed to resume his sports. What really matters is that this seems to be working for your son, well done and good luck for the future.

Gilly xx

tonibunny
25th May 2007, 09:57 PM
Hi Canary,

Thanks for your reply. It's very interesting! It's generally found that lung function isn't noticeably affected by scoliosis until it reaches 70 or 80 degrees at the very least, and not worryingly so until the curve is about 100. Someone with a 30 degree scoliosis wouldn't usually show up any real lung function limitations at all. Were Jon's lung function tests done at the NHS hospital or by his GP? It would be interesting to see what they say. Of course, breathing exercises can help maximise lung function even in healthy individuals.

It's a shame that Jon hasn't had the Cobb angle from his latest x-ray taken. It would be very helpful to know - maybe you could ask Jon's specialist next time you see him?

With alternative therapies such as this, we have been mainly worried about people needing surgery for severe scoliosis being put off by a treatment that may cause more problems further down the line, especially when they may not be getting up to date information on what the surgery involves (some clinics have been sending out information that is extremely irresponsible and refers to studies and methods of treatment that are decades out of date, making it sound a lot more dangerous and horrific than it is today). I'm very glad that Jon isn't in this position, and that his main problem - his pain - has been controlled :-)

Toni xx

Amazed Jean
25th May 2007, 11:42 PM
Canary and Jon, Hello and welcome. Can you tell us more about where you are and who you have seen as well as actual curve numbers -surely the clinic where you went for Schroth method will be able to tell you both before and after Cobb measurements. If you don't mind can you tell us if you were a private patient or did your insurance cover the treatment? Also I've heard that is fairly expensive - is it? And please have Jon join SSO. Lots of young people here that want to hear the details from a patient's point of view.

Canary
26th May 2007, 12:41 PM
Hi

Thanks for the replies, I will try and answer some of the questions raised, please accept that they are my understanding and I may not explain them as well as I would like!

The exercises are highly specific and are modified according to a personís individual curve. I can understand why they have to be taught by someone fully trained in the Schroth method. They also require some specific equipment and need to be practised daily.

They appear to work on a number of areas. Some exercises elongate the spine, when Jon performs these I can see his spine straighten as if it were being pulled at both ends. The exercises also activate the muscles that attach to the vertebra. As the spine has rotated, these muscles have become imbalanced i.e on one side they are constantly pulled and tightened, on the other side they are loose and weak. This muscular imbalance is corrected by the exercises targeting those muscles that need to be relaxed and those that need to be activated. It is this which I believe has reduced Jonís pain. By actively working the muscles and de-rotating the spine the ribs will also move back towards a correct position which is why a rib hump/prominence will also be reduced. Core stability muscles are also worked and once strengthened will support the spine and take some of the load away from the outer muscles. Since doing the exercises Jonís balance has improved, he also distributes his weight more evenly (this was shown on the Pedoscan). Furthermore Jon has learnt the technique of rotational breathing, something that takes some learning and needs to be taught by a specialist. Again to me this makes physiological sense as this targets Jonís weak point. Opposite to a prominence there is the corresponding Ďdipíor weak point. While breathing out, Jon has learnt how to hold the inflation of the rib cage, not allowing this to collapse, while still being able to expire the air. Hope I am doing an OK job of explaining this as it is really obvious when you see it in action but not too easy to put into words.

I should point out that it is really important that Jon maintains his corrections during the day and he does have to think about his posture, it is really important that the brain accepts the corrections as the normal posture. If Jon were to slump back into his scoliotic position as soon as the exercises were completed then his brain will not recognise the changes. People actually comment on how straight Jonís posture is and some people think he has grown a lot taller. Jon himself says that he now feels taller, straighter and more flexible. As Jon plays sport at a high level, he is also seen separately by a specialist sports physio who is impressed by the nature of the exercises and the improvements they have made.

The lung function tests were performed by the clinic and showed an improvement. I am not suggesting that Jonís lung function pre-treatment was an issue, as it was not, however it now falls into the expected range for his height and weight which it did not before. I think it has improved because of changes to his posture and the exercises. Jon has only noticed a difference when he is under extreme pressure during sport.

I hope I do not come across as someone who is anti surgery as I am not. I can see the enormous benefits that this brings to people and for many it is absolutely the right course of action. I worked in the NHS for several years and support the work they do. To me Jon fell into that huge grey area. He has Scoliosis which is considered significant enough to be monitored by an Orthopaedic surgeon but he cannot offer Jon a way of preventing its possible progression (both the Dr at Scoliosis SOS and his surgeon did not consider bracing as an option as he is already well into his growth phase). I really wanted to try and find something that would stop the progression and if possible avoid major surgery. Jon was also in pain, something I found difficult to make the surgeon understand as his comment was that it is rare for teenagers with Scoliosis to have pain. I have no doubt that by following the Schroth exercises his pain has virtually disappeared Ė the exercises are the only change that Jon has made.

The question of costÖ..We paid for the treatment at Scoliosis SOS as we do not have private health insurance, which is a pity as the clinic is registered with most major PHI companies. The treatment cost was £2,400. Whether this is considered expensive probably depends on an individualís financial situation. I viewed it as £20/hour and as I have paid this for sports coaching, piano lessons etc I actually thought it was reasonable. As a family we were certainly willing to give up a major holiday this year.

The clinic does offer a free consultation at which, I have to say, I learnt far more than at the NHS clinic. The Dr was extremely approachable and answered a lot of questions and I certainly felt under no pressure to continue. The Dr and Physios are highly professional and supportive. It was also good for Jon to work alongside other people with Scoliosis and I think the clinic helped Jon come to terms with his condition. It was also good for him to meet older people who had managed their lives with Scoliosis. Some ladies were in their sixties, had not had surgery, and for the first time had someone actively caring for them and making real changes to their lives.

I hope you do not mind me writing what seems like a lot, but I am actually finding this good for my soul.

Canary x

GillyG
26th May 2007, 11:34 PM
Hi Canary,

I think it's fantastic to get this first-hand feedback about the clinic and its' methods, thanks for taking the time to share this with us. As you say, falling into that 'grey' area is always very difficult and, since bracing wasn't really an option for your son, at least you are willing to go the extra mile and try other methods which seem to be helping him. I have to say though, I'm relieved to know he is still being monitored by an orthopaedic surgeon as I think it's important to be aware of his actual curve progression (should this happen), since surgery may well be necessary in the future and this would be better tolerated and give a better correction the younger he is.

All the best for the future.

Gilly xx

stana29
8th June 2007, 09:28 PM
Hi Canary and others,

Thank you for telling us about this clinic. I have also looked at their website few weeks ago but have found out that they only accept people aged 8-80. I keep asking my daughter's orthopeadic surgeon if any scoliosis exercises work and they keep telling me that there is no evidence it does.

I took Jessica to Czech republic (that's where I come from) and they have very similar rehabilitation centres to the SOS scoliosis centre. There is so many centres to choose from in the Czech republic. I picked Hamzova Lecebna rehab. centre where they follow K. Schroth method and other methods. We went in april for 10 days to learn some new methods to practise at home despite doctors in the UK telling us is doesn't work. The doctors in Czech are telling us it does work but you have to be dedicated to it.

They send children there for 4-6 weeks twice a year (paid for by the National health insurance) and they see the difference. I spoken to many parents there and they have proven to me that all those exercises accually help. Jessie had a routine every day : hydrotherapy pool, hippotherapy (horse riding whilst laying down), Schroth exercises, massage, swimming and ergotherapy. She loved it there and enjoyed doing the exercises. Sadly 10 day is not enough and her scoliosis got worse. I, however believe that it works and would if we stayed there for longer. We couldn't as we paid for it and 10 day cost us £600.

Anybody esle with such an experience,

Stana

Please visit the rehabilitation centre website on
http://www.hamzova-lecebna.cz/eng/index.html

caro
10th September 2007, 06:55 PM
Hi - I am new to this webiste. I have been considering the Shroth treatment in East Anglia and think that I'll go for the initial consultation. I'm 37 and have a Cobb of 30 degrees. It seems that O fall into that grey area. I have always been advised not to go for surgery by the specialists over the years. But my backache really is getting so much worse.
I'd love to hear more first hand experiences of the SOS clinic before committing myself as I can't really afford it - but am willing to do it as the pain is so bad at times.

Thanks

nutmeg
11th September 2007, 01:51 AM
Hi Caro

Yuo might want to consider some lessons in Alexander Technique. Don't expect it to straighten your spine, but it can be useful to reduce pain.

You can find more information here
Alexander Technique (http://www.stat.org.uk/index.htm)

I'm not sure how much lessons would cost in the UK, but you should be able to find a teacher much nearer to you than East Anglia

Meg

tonibunny
11th September 2007, 02:11 PM
Hey Isabelle,

Maybe you should talk to Isabelle (Foxburgh) if you are interested in Schroth? She says that she has a pay-as-you-go system, so you don't have to pay a huge lump sum up front.

I'm so sorry you're having so much pain :( The right exercise can work wonders though. Good luck with finding something that works for you!

Toni xx

caro
12th September 2007, 08:25 PM
Thanks Tonibunny and Nutmeg. I've posted Isabelle Foxburgh on another thread but no reply as yet. Back killing me this afternoon having had to lug my laptop around at work and then sit through a meeting.Grrrrrrrrr....

RugbyLaura
15th September 2007, 03:39 PM
Caro,

I sent Isabelle a PM and she responded VERY quickly. You could try emailing her at foxburgh@btconnect.com or isabelle@foxburgh.co.uk.

Good luck,

Laura

caro
16th September 2007, 07:55 PM
Thanks Laura! Isabelle has now replied on the other thread. Unfortunately she doesn't know of any where nearer to home that could help.

I really don't know what to do. Taking 4 weeks in East Anglia - the other end of the country from here would not be easy. I have a little boy who is 2 so would have to rent a cottage or something. Its going to cost a fortune......and will it work?

RugbyLaura
17th September 2007, 12:10 PM
Caro,

What has your consultant said about your pain?

Laura

tonibunny
17th September 2007, 01:25 PM
Caro, there are many options for you on the NHS which it would probably be best to look at before considering spending a huge amount of money. If you do decide to look at Schroth though, if I were you I'd go and try it out at Isabelle's clinic for a weekend.

What does your GP say about your pain? Do you swim and walk regularly? Have you tried various types of painkillers (there are different sorts, that work in different ways, and some may work where others have failed). Have you been referred for physiotherapy? If so, have you been referred to a pain clinic?

I second Nutmeg's suggestion - the Alexander Technique can work brilliantly for reducing pain in people with unfused scoliosis, and there are practitioners all over the country :-)

caro
17th September 2007, 07:56 PM
The specialist I saw could offer me nothing on the NHS and in fact I have been discharged from his surgery!!!!!! 30 degrees - they are just not interested.

I swim a mile at least twice a week, go to the gym twice a week and walk alot although that hurts.

Tonibunny - why do you suggest Isabelle's place above SOS? (no offence Isabelle - just wondering that's all)

I am holding off painkillers. I'm afraid that once I start on them I'll be on them for life.

I am waiting for a referral to the physio.

tonibunny
17th September 2007, 08:23 PM
The specialist might not be able to offer you anything to correct your scoliosis, but if you are in pain then your GP will be able to refer you to a pain clinic. Mind you, if you are managing without painkillers then I doubt they will do that.

Having heard from both the girl who runs Scoliosis SOS and Isabelle here on SSO, I personally prefer the sound of Isabelle's approach, especially as she has been totally straightforward with us about everything and she will allow patients to see her only as and when they need to.

Canary
18th September 2007, 05:56 PM
Hi Caro,

I thought you might be interested to know that my son has continued to follow the Schroth method since I originally posted this thread and he remains virtually pain free. At the beginning of the year he had stopped all sports and exercise and is now back competing at a high level.
Whilst attending the clinic many of the other patients, with ages probably ranging from 12 to 65 years, appeared to experience some real benefit and therefore I would think it might be worth you attending the initial free consultation and asking as many questions as you feel necessary.
I can only speak from my personal experience of Scoliosis SOS and I found (and continue to find) everyone there extremely professional and helpful; without their expertise and support I am sure my son's quality of life would not be what it is today.

Canary

caro
18th September 2007, 07:40 PM
Thank you Canary & ToniBunny for your replies - I appreciate both of them. It is very difficult to know what to do for the best as nothing is really very practical. However, I have to do something as I am getting lower and lower about the state of my back and how I look.

sins
18th September 2007, 08:10 PM
Hi all,
It is important to point out here that this website doesn't endorse or recommend any particular clinic, healthcare professional or type of treatment.If any person is considering pursuing any form of alternative treatment, then it is best to satisfy yourself that you are making the most informed choice possible and weigh up the risks and costs involved.
It has been my experience that some alternative practitioners have simply taken the money from well meaning parents and made ridiculous promises, when all the time their child's curve has progressed to an uncorrectable deformity.
Anyone associated with a clinic (schroth or otherwise) is welcome to post and add information to the public domain.Please refrain from canvassing SSO members for their custom as this is not acceptable.
If a scoliosis patient has experience with any non surgical therapy, it would be good if they could share their experiences with the group.
Sins