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Old 9th March 2010, 02:55 PM
stana29 stana29 is offline
Stana and Jessie
 
Join Date: Jan 1970
Location: London
Posts: 322
Default Re: Went To Scoliosis Sos Today

Hello,

I would like to add my opinion about the Scoliosis SOS clinic and Joanna Slup.

As some of you know, my daughter Jessie has neuromuscular 59 degree thoracic curve a and a tumour wrapped around her spine and inside of her spinal canal. Because of this complexity, a surgery to insert the spinal growth rods in order to straighten her spine cannot be done without actually removing the tumour which in this combination (tumour resection + rods) never been done in the UK.

This complexity made me to explore alternative treatments and I am glad for it.

My daughter has been wearing Cheneau back brace for the last 14 months and her scoliosis has been stable, prior to this she wore Boston brace (measured for not casted) and her scoliosis progressed from 23 degrees to 59 degrees in 18 months. So I can say that every penny was worth spending on the Cheneau brace which unfortunately is not available on the NHS.

Needless to add that Cheneau brace in combination with visiting rehabilitation centres for children as well as adults is a norm in mainland Europe (Germany, Spain, France, Czech Republic, Slovakia, and Poland).

Children visit scoliosis rehab centres for 6 weeks every year and work hard on strengthening their tummy and back muscles weakened by wearing their back braces, where they swim, relax in Jacuzzi, receive massage, do yoga, Pilates etc. In addition, most of those centres follow methods such as Katharina Schroth, Vojta, Kubat etc.

Can somebody please direct me to a centre that offers something similar in the UK paid for by the NHS? Well, I haven't found any.

Anyway, to cut the story short, I do believe that Schroth method is an amazing method and anyone having an insight into how this method actually works will agree with me. The exercises are logical as well as thoroughly thought through.

My daughter is lucky enough to be taught this method by Joanna Slup in London and I cannot praise Joanna's dedication to my daughter’s physio regime highly enough. She regularly visits Germany and K. Schroth centre where she updates her knowledge. Anyone considering learning of this method, visit her and see it for yourself. Joanna is dedicated and her true motive behind her business is making you feel better not make money out of you.

We also visited the Scoliosis SOS centre in Ipswich and my honest opinion and feeling about this centre in not that great. I felt the pressure for signing up and all my questions were not answered, however when I spoke to the ladies exercising there, they could not praise this centre more.

It is difficult to make a choice, especially when high costs are involved but at least the choice is here and I am sorry some might not like this but what is NHS doing for children with scoliosis apart from a surgery? Not much, really! I asked numerous of times about physio for children with scoliosis (not suffering from pain) and the answer was that exercises don't help!!! Well, in my opinion (yes, I am not an expert and doctor by any means), exercise work in a way of strengtening you muscles that hold your back in tact, but the very limited NHS budget does not give our children much choice, does it? You tell me, why on earth would all those mainland countries send all scoliosis children to scoliosis rehab children to exercise and possibly avoid or postpone surgery if they believed it doesn't work???



Stana






Hi Curvyclaire, welcome to SSO

We have had members in the past who have been to both Joanna Slup and to Scoliosis SOS. They offer different treatments, in that Joanna Slup is a certified Schroth physiotherapist and thus teaches the Katherina Schroth Method, and Scoliosis SOS provide their own brand of physio called "Scoliogold".

Joanna Slup's clinic is registered with the CareQuality Commission, which regulates private healthcare clinics in the UK to ensure that patients are safe and get good treatment. From this year, all clinics must be registered with them.

Welcome again,

Toni xx

Last edited by stana29; 9th March 2010 at 03:04 PM. Reason: spelling
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