Scoliosis SOS Clinic

Hi Lesley

Welcome!  Your story is very similar to mine in that I too kept any problems at bay with yoga and swimming.  Unfortunately for me other health issues meant I had to give both up a few years ago and with increasing age and a degenerative condition things suddenly deteriorated.  

Your docotor should be able to provide you with your records.  I was able to get my 1960 records from Canada and later  UK records from the 1980's so you shouldn't have any problems.  It is very helpful to have a base line to start from and as this is a degenerative condition it would be useful for you to know where you are.

It is imortant that patients with scoliosis see a consultant who speciaises in scoliosis or other spinal conditioins rather than a general orthopaedic surgeon and I would advise you get in touch with the Scoliosis Association UK.  sauk.org.uk and ask for a list of consultants in your area.  They will provide you with details of consultants in your area who specialise in scoliosis and then when you see your GP you will have a name of someone you want to be referred to.  SAUK provided me with a list of three and then I was able to do some research and decide which one I was happiest with.  Although he can't do anything for me at the moment he saw me twice over a year and gave me an enormous amount of his time to discuss my particular problems and his door is always open should I want to go and see him again. Can't praise him enough! If you live in the Bristol/Bath area let me know and I can tell you about two of the specialists that will be recommended.

With regard to Schroth, it's ongoing though as I see him every three/four months for an hour and go through my exercises to make sure I'm doing them correctly.  This I think is important as you can easily pick up bad habits.  It does mean there is an ongoing cost but it'll be years of appointments before I spend anywhere near what the SOS Clinic in London would have cost and there's no follow up with them.

My curves are pretty much set in stone but it has helped so much with the pain that I just get up and go in the mornings now without worrying about how I'm going to get through the day.  It's been very beneficial for me and I'd recommend an osteopath to anyone who's thinking about Schroth.

Let us know how you're getting on.

Take care.

Curvey

 

Well, it's over a year since I posted in this discussion, and I am doing well, without doing the SOS programme (though in panic, I parted with a £500 deposit...). I was very worried about my back, having increasing left-side pain and having lost 2.5 inches of height, but I wasn't convinced that I would benefit sufficiently from SOS (I'm now 61) to justify the cost, and huge subsequent commitment. But I was really worried about whether my scoliosis would be an increasing problem. SOS had told me that in the worst case, if I didn't do their programme, I could end up needing a wheelchair, etc. (I now look back and feel quite shocked that they said this, and that this was scaremongering...) SOS do NOT do proper x-rays etc, or CT/MRI scans. I joined the Scoliosis Association and went to a very useful day workshop for adults with scoliosis, with some great speakers from the Royal National Orthopaedic Hospital. I did some more research and asked my GP to refer me there. They did x-rays, an MRI and CT scan, and offered to monitor my spine over a year to see if the curve is progressing - though they felt that I was doing well with my curve, and that there could be other reasons for the height loss - the discs lose some of their bulk as you age, and my posture could be changing for other reasons. Generally people lose height as they age. I also took up Alexander Technique, which I have done at different stages of my life, with a really very good teacher, who has encouraged me to see that actually my scoliosis doesn't have to be a barrier to ease and good movement.   And I've continued with Pilates, with a teacher who is very interested in rehab and who adapted the exercises for my spine, and also to ensure that the exercises work to reduce rather than worsen my (borderline) osteoporosis. So,  more than a year on, how am I doing? Much better!  I have a lot less pain, and I'm less worried by the pain (which actually alleviates it!). Because of the Alexander technique, I generally move and use my body in a much more aware and easy way.  The RNOH says that my spine curve is NOT progressing and that I don't need to worry about it, and that being active and doing lots of exercise is the best thing I can do. One of the doctors I saw says that Schroth is probably great, but so are other kinds of exercise. Generally I feel much more confident in my body. I spent a month of the summer hiking and mountain-walking in the US and have just started to tackle a newly acquired and very overgrown allotment. Alexander technique means that I am thoughtful about how to dig and bend, and I haven't suffered. In fact I would say that I have less back pain than many people who don't have scoliosis!  So... of course all our backs are different, and we make different decisions at different stages in our lives (I'm 60) but the lesson for me was that I shouldn't assume the worst, that I should take the advice of outfits that need to make a profit with a pinch of salt, (however good they may very well be for some people, of course) and that we should look at all options before diving in to the SOS type approach. But of course that's just me! Good luck to you and everyone on this interesting journey!

I have removed the specific details of an individual practitioner in this discussion as this is classed as advertising. If users want the specific information please use the private message service to exchange.

Regards,

Alan

Alan

Apologies.  Not done intentionally.  I'll take more care in future.

Regards

Curvey

Hi Curvey

I can't find the private message facility on here but would be interested in the names of the specialists you mention as I also live in Bristol and am looking to see someone, can you provide names?

Many thanks

Shaun

Sent you a private message, it's the envelope on the top right of the message bar

Hi Shaun

Check youre PM's.  I've sent details there.

Curvey

It's been three months (at least) since I posted and you replied to my post, I'M

Hi, I'm sorry it's taken me so long to reply after you replied to my post on here!  It was really interesting to read your update from when you'd originally posted on this forum.  I have to say I have since been active in trying to find a way to ease the pain I get from my scoliosis through my own efforts.  I have found a local restorative yoga class, which is not like the yoga I have been used to practising but in fact suits me much better as it's more about holding certain asanas for minutes at a time to work at reducing tension.  It's very, very relaxing too!  And I have noticed an improvement, not after every session but certain of the sessions I've been to the next few days following when I've got up in the morning I have actually been pain free.  I have also been going to a personal trainer recommended by my deep tissue therapist (and previous yoga teacher, who has lordosis).  She was seeing the personal trainer herself and suggested it could benefit me as an alternative way to build up my muscles (age unfortunately and lack of regular yoga practice means they are withering!!) therefore helping to support my body again.  I have had 8 sessions with the PT and have also now signed up to a gym so that I can carry on after my course with him finishes.  It's really enjoyable and there is already a differnce in muscle tone - not that I'm trying to become Miss Universe, far from it!!  And I'm very conscious of not using heavy weights, that's of no interest to me, lighter weights but more repetitions.  It's good to do some different things.  I'm also walking 2 miles every day, again this has also helped enormously.  I can now do longer walks again and it's not so much of an issue for me, I really feel so much better for doing this.  I've also purchased a couple of books, one is yoga for scoliosis and the other is pilates based and I intend to work through those too, one of the books in particular I think I'm going to get a lot from.  I did some gardening the other day and was very pleased that the next day I felt fine!  The thing that seems to be worse now is if I'm standing for a length of time so I just have to manage that and be aware.  I think I had got swept away on a wave of panic for a time but I've gone through that and now feel good that I'm doing different things to help myself.  I am very glad I didn't rush off and book on to the SOS programme. 

Hi, apolgies for not replying to your post sooner, I don't know where the time goes!  I was interested to read your story.  I have embarked on a new regime of exercise which seems to be having a positive effect on my back/body overall.  I go to a restorative yoga class which is really good, plus I've started going to the gym - something I could never have seen myself doing before but having had sessions with a personal trainer who was recommended to me by my yoga teacher who thought it would help me to strengthen my muscles (which have weakened considerably since I stopped regular yoga) which in turn will better support my body and more importantly help my back issues.  And I walk every day, 2 miles which i can do in 30 minutes so that's easy to fit in most days.  I feel much better overall and especially in my back, so I'm feeling much less panicking about my condition deteroriating at the moment, it all feels good.  I'm hoping it will continue as I get more and more muscle strength back.

Dear Lesley, my turn to apologise to you for not responding! It sounds like you too have found that it works to find different ways to exercise gently / and moderately have made a big difference. I hope that's still the case! This is what I was advised by the RNOH and at first I thought, oh well, that's because they haven't come up with anything better, but I now trust that there is weight to what they say, particularly after they took such care to make sure my spine curve wasn't progressing. I am still doing really well, but keeping on with Alexander and pilates, and gardening, and almost entirely pain-free. Of course it may not stay this way, but there are plenty of people around me who have really serious back pain and don't have scoliosis, and who perhaps have not taken the kind of care that we have of their backs. Perhaps the lesson is not to panic, and to be careful with claims made by anyone who has a financial interest in what they are proposing. 

Hi, did you get my message?

Hi 

No  I cannot find any message from you.

 

It should be in the message envelope next to your name , if not I will send it again.

look for other alternatives search for schroth therapists in Google.. there are a couple in London kingston and UK.

Hi. If you could send it again, I have checked the inbox but is empty. Thanks

Hi Grzegorz, 

I think you're right to try to get as much information as possible - I was really impressed by RNOH, though of course they are very stretched. Your GP might be reluctant to try to refer you as they are a tertiary service. I phoned the secretary of the Consultant I saw - can't give you his name as this constitutes advertising on this site, but the Scoliosis Association can give you details of their consultants and when you look them up, it will be clear who is best for your daughter to see.  I told the secretary about my issues and she said said that the consultant would see me, which helped me move things with the GP. I think Scoliosis SOS is mainly geared to children, and perhaps more appropriate for them, but I would get best possible RNOH advice first. Good luck!

Hi Grzegorz,

I have just joined this forum, as I have just recently found out that my teenage daughter has scoliosis and was searching the web for help.  Like you, I.am awaiting to see a consultant for my daughter, after seeking the help of the Scoliosis association who forwarded me a list of Spinal Scoliosis consultants for my daughter's condition.

Similarly, I came across Scoliosis SOS and contacted them.  However, I was not impressed, and am now wary, due to their trying to get me to commit immediately, it is a lot of money.  I was informed that the cost would be almost £4,000, however this is apparently only to the end of the month, and that from 1st October it would increase a further £200 and another £200 if I did not pay for a 4 week course and instead opted for 2 x 2 week course.  I cannot afford this kind of money, it appears to be reserved only for the wealthy,  Not only do the costs apoear excessive, you also have to fork out additional costs for travel, food (which they do not provide) and hotel costs, as I am a distance from London.  There is also the important fact that my daughter will be missing school and I cannot allow this to happen during study for her GCSEs, and even if my daughter were younger, unless the course were held through the school summer holidays, I believe it would be impractical to do so for such a long period of time.  Furthermore, when I said that I would have to first discuss this with my husband, I received a message the following day to say that the courses are now full.

I have now taken the decision to err on the side of caution, and to refer my daughter to a physiotherapist to see if they can help my daughter with exercises that may help her, whilst awaiting to see a spinal scoliosis consultant first, and to seek their professional views, before making any further decisions.  

I would be grateful if anyone on this forum is able to recommend any physiotherapists who may practice the Schroth method or other Scoliisis exercises in the Kent region.

I wish you all the best of luck in receiving help for your daughter; please keep in touch and let me know how your journey progresses.

Yep. ScoliosisSOS charges more...My daughter is undergoing 4 weeks course there...Its lot of exercise 10 AM to 5PM.  Also, the equipment and other things costs additional £500

But they wont commit on how mcuh curve can be reduced...They measure using scoliometer..Need to go for xray to check actual result

My daughter has been using an Osteopath in Tetbury , it is a bit further than London for you , however it is only 3 to four days long . He is very good and really understands Schroth. He charges a fraction of the price too. Let me know if you need any more info

Hi Tina,

I am so sorry to hear about your daughter condition. 

We also did not decide to use SOS as it is really expensive. We found a LOC clinic located very close to our home in Kingston with Schroth physiotherapist. They have also clinic in London so it probably  would be more  convenient for you. Please find the link below:

http://www.londonorthotics.co.uk/clinics/kingston-upon-thames-orthotic-and-plagiocephaly-treatment-clinic/

So far we had a 2 appointments where we were shown a few Schroth exercises and for the last 3 weeks we try to  do it almost every day. It is early stage for us and we have to wait another 3-4 months before the next x ray. What they do is all depends on the curve size. If it is below 25 degree they recommend only exercises if between 25-35 they do specially customized brace which is made in Germany plus exercises. In my opinion it is worth to try and it doesn't cost that much as SOS.

I would also definitely recommend you to join a facebook  group: Scoliosis UK ASC/VBT (Non Fusion Surgery) Support Group. This group is more about VBT procedure unfortunately not provided in UK ( I hope it will happen soon) which compare to spinal fusion is less invasive and does not immobilize the spine. There is so many people from UK and from all over the world on this forum with theirs scoliosis story.

I hope you can find this information helpful and If you need to ask me about anything else please do.

I wish your daughter all the best.

Regards 

Greg

Greg

 

Thanks for the information  and how is your daughter getting on ? 

Out 15 year old daughter has just been diagnosed and is to be braced . We live in Ireland 

I am interested in the exercise therapy and wondered if anyone went to Germany to the scroth Center ? 

If so how was it and how expensive ? Did you stay there   ?  

We have a visit with a physiotherapist next week so I am keen to see what exercise we can do ourselves also 

Look forward d to hearing anything 

My daughter does Schroth since September. She does it at home, we only visited physiotherapist 3 times since then. Overall we noticed that the exercises improved her posture but I cannot tell if it also had any impact on her curve. We have next x-ray scheduled on June so I will be able to tell more after that. With regards to exercises they need to be tailored to the individual but you will need to install a wooden exercising bar at home. It is a necessary equipment  and most of the exercises are performed on that. 

I cannot say anything about Germany Schroth centre, but you can definitely find some information on the UK ASC/VBT (Non Fusion Surgery) Support Group on Facebook. Please join this group because you will find a lots of useful information about scoliosis.

I hope that helps and please let me know if you have any other questions.

I wish your daughter all the best. 

Regards

Greg