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  #16  
Old 4th March 2010, 06:51 PM
aqz aqz is offline
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Default Re: Went To Scoliosis Sos Today

yes defo i think today was just to see how they work
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  #17  
Old 4th March 2010, 11:49 PM
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Default Re: Went To Scoliosis Sos Today

Nice one you sound like you have it all under control, as well as scoliosis sos i would also look at Schroth (true schroth not a hybrid) a clinic has opened in London and the Alexander Technique you can find AT if you google it

If you are thinking of going down the alternative therapy route then you do have a number of options available to you

Take your time before deciding, about the only good thing this curse we all have is the ability to take a little time to decide what we want and what is best for us

Mind dont take months deciding but you do not have to make any decisions over night and if we can save you a few pennies then in this current financial climate, well that has be good doesn't it

If you want my advice i would not look into claims about how good a treatment is i would look for published documents supporting those claims and try to get it on the NHS that will save you even more pounds

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  #18  
Old 5th March 2010, 12:11 AM
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Default Re: Went To Scoliosis Sos Today

Am going to be a bit blunt mate ... if you have the cash for a lets say a clinic that we have strong threads on ...SOS .. why spend the money on that first if you have the money go down the route that toni and mark and every other member has said and i will say it also phone up mr tuckers sec and self refreal to see him .. hes the best in the ountry in my eyes and he will tell you actuall whats next .. byall means ask about the clinic but at least you will get your cobb angled mesured probally have the best advice in the up .... paying money to them is a waste of time belive me .. do you really want to do excisies 23 hours a day .. or see some that knows best and will be cheper that going the clinic i know what i and a lot of member would choose .. good luck anyway
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  #19  
Old 5th March 2010, 12:37 AM
angie123 angie123 is offline
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Default Re: Went To Scoliosis Sos Today

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Originally Posted by Simon View Post
Am going to be a bit blunt mate ... if you have the cash for a lets say a clinic that we have strong threads on ...SOS .. why spend the money on that first if you have the money go down the route that toni and mark and every other member has said and i will say it also phone up mr tuckers sec and self refreal to see him .. hes the best in the ountry in my eyes and he will tell you actuall whats next .. byall means ask about the clinic but at least you will get your cobb angled mesured probally have the best advice in the up .... paying money to them is a waste of time belive me .. do you really want to do excisies 23 hours a day .. or see some that knows best and will be cheper that going the clinic i know what i and a lot of member would choose .. good luck anyway
I don't want to interfere, but for someone who has a curve that is not large enough for surgery but is in a lot of pain - what other options are there besides alternative therapies? What will a scoliosis surgeon do for someone who doesn't need surgery? In Canada a scoliosis surgeon won't even see an adult whose curve is less than 50 degrees - because all they do is surgery.

Is it just this Scoliosis SOS that is so terrible, or all alternative therapies? I don't know anything about SOS because I am fairly certain we don't have it here.

I'm just asking because I'm in a similar boat - moderate curve, lots of pain, absolutely NO medical options.
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  #20  
Old 5th March 2010, 01:26 AM
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Default Re: Went To Scoliosis Sos Today

Hi Angie

I don't think anyone is getting at one paticular clinic, in fact far from it every form of therapy has its place and i would not knock anyone for what ever way they choose to go

In this horrible painful life we lead we need to explore all options, i don't know whether Simon has had a bad experience of this clinic or not, or he knows someone who has i have heard mixed reviews and would not like to comment on them. I have had my say in the past and reading back my comments is hard because i was less than gracious.

in my post i just wanted to bring to aqz attention that there are many other alternative clinics out there alongside the traditional NHS route

Pain is a horrible thing to have to deal with, i don't know where about in the world you are (sorry i should have looked) but here in the UK we have the NHS which is free at point of contact (i know we pay for it in taxes) but at point of contact it is free

Now these alternative clinics cost a lot of money and its great to read reports from people who use them because it could save someone a small fortune' I know some of these therapies cost upward of 4 thousand pounds, now that kind of money is hard for the most stable of households to find so it is nice to read experiences from people who have used these clinics

The paticular clinic referred to has had some mixed reviews so maybe Simon has had or knows someone who has had a bad experience

I am sorry to read that you have so much pain, i can truly sympathise with you

I hope all that makes some kind of sense i am doped up on painkillers and its late
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  #21  
Old 5th March 2010, 05:41 AM
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Default Re: Went To Scoliosis Sos Today

Remember that no two cases of scoliosis are ever identical. Remember also to do what feels right to YOU. Do your homework first... asking lots of questions AND getting more than one opinion. Anyone worth their salt in scoliosis will be able to do an xray and measure your Cobb angle and might want to do a lung function series with a pulmonologist. They do what YOU think is right - You have to live with it. Keep us posted!
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I am 61 years old and the resident SSO fossil. I live in Oklahoma,USA with my husband Allen. We have one daughter Jae and she has three kids.Our grandkids are: Aidan is8. He's the one pictured in my current avatar. Jenna Jean is 7 and Ryan Allen is just 4 It's full time chaos here! I was diagnosed in 1965 at 14 years with Kyphoscoliosis and 2 curves measuring 68 and 63 degrees. My last measurements were in 2004 at 155, 88 and 55+ degrees. I have never had surgery or bracing so I now am on full time oxygen and use a Non Invasive Ventilator at night. at night.
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  #22  
Old 5th March 2010, 11:59 AM
carolad carolad is offline
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Default Re: Went To Scoliosis Sos Today

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Originally Posted by mark View Post
If you are thinking of going down the alternative therapy route then you do have a number of options available to you

Take your time before deciding, about the only good thing this curse we all have is the ability to take a little time to decide what we want and what is best for us


Mark
Thats exactly the advice I would give! By all means explore the SOS route, but please don't rush into anything. Explore your options first before you commit yourself - these things are always expensive as Mark says, so you want to spend your money wisely.

I've had great results in using the Alexander Technique for pain relief - it doesn't promise to cure the problem (which is one of the things that appealed to me - you will find out there are lots of dodgy people out there promising miracle cures that never materialise!)but it has really helped with my posture and my pain levels. This is a really good website which gives more information and details of teachers in the uk: http://www.stat.org.uk/

Good luck with whatever you decide to go for, but please don't rush into parting with your hard earned cash!
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  #23  
Old 8th March 2010, 04:05 PM
curvyclaire curvyclaire is offline
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I went for a consultation at Scoliosis SOS in London a couple of weeks back and also had one with Joanna Slup the same day to compare. They were both very professional, but I chose SOS as they are larger and seem to have more experience. While I was there I got chatting to some of the other patients. One woman has been doing treatment for 2years and goes back every six months for a checkup, she said that she is now painfree and her curve is 10 degrees less. Really hoping this treatment is going to work for me as I would love to get rid of my pain. Has anyone else tried it?
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  #24  
Old 8th March 2010, 04:22 PM
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Default Re: Went To Scoliosis Sos Today

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".

Welcome again,

Toni xx
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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.

Last edited by tonibunny; 16th March 2010 at 03:49 PM.
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  #25  
Old 8th March 2010, 05:54 PM
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Default Re: Went To Scoliosis Sos Today

Welcome to SSO, i hope you enjoy our site and get as much out of it as i do, i'm sorry for the reasons that have brought you here but know you are i am looking forward to reading all about this scoliogold treatment. I have to say that we are hearing a lot of mighty good things about this clinic lately

Wow your friend is painfree and down to 10 degrees, what was she before, is that 10 degrees cobb angle or 10 degrees of there own measurements

I should have looked them up prior to my surgery for a 100 degree plus curve. I don't think even at his optamistic best my surgeon could have hoped to get me down to anywhere near 10 degrees and pain free,

sounds more like a miracle than treatment

Once again welcome to out slightly wonky world

Mark
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  #26  
Old 8th March 2010, 07:24 PM
Sue T Sue T is offline
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Originally Posted by aqz View Post
Hi all,

i went to the clinic today in london,i must say it seems very positive.I know even though they cannot give exact measuremet,but they do have some experience obviously.According to him my curve does not seem severe but hey i still wanna know for sure from an expert.Has anyone tried this clinic and how was it for them.
Hello aqz
I've only just joined sso today (I'm a bit of a techniphobe so hope you'll all bear with me) It's probably due to being an 'oldie'.
I wanted to let you know that I have idopathic scoliosis- discovered when I was about 8years old- I am now 61years
of age(but a VERY young 61 year old!!!)
I've had all sorts of treatment throughtout my life- I have not allowed it to stop me from doing whatever I have set my mind at doing. I am married to a wonderful husband - who has been extremely patient when I've moaned about my back.
I discovered the SOS clinic in Suffolk (they've since opened up in London) and I really wished I had discovered the place when I was younger!
I have got my life back- 'though it's not without it's problems, I still have a few aches and pains but I am able to deal with them in my own way.
The exercises I was taught to do were 'bazaar' to say the least, but, what a difference, what an investment for me. Hard work, wonderful physios and on my return home (I was away for 4 weeks) so many people noticed such a transformation in my posture, I felt heaps better in myself- my breathing has improved, I was told I looked younger(I need that at my age) My mum proclaimed it a 'miracle'.
I now have my own little gym and have to exercise for 35mins everyday. Yes, it cost a lot of money and equipment had to be bought etc - but it was about the price people pay for a membership for joining a gym and I have my own private one at homefor the rest of my life!
I made new friends who understand exactly how I feel, I discovered a 'new' understanding of my condition- even after all these years, I actually gained a new found confidence and I am able to stand far straighter than I've been able to for years and for longer (without pain).
I am in control of my back instead of it controlling me!
I would also like to add that I think that all the advice that is and has been offered to you is wonderful and so supportive and I would say don't close any doors, there is so much more information out there, wish I'd had the opportunities when my scoliosis was discovered.
Would like to think that I've been of some help to you and perhaps somebody else out there!
By the way I've been offered operations on several occasion and I 'm really pleased that I've always turned it them down- I've worn plaster jackets-plastic jackets and a milwalkee(hated them).As I 've got older my pain was getting worse SOoo for me the BEST remedy has been the SOS clinic Erica Maude the founder (only about 21yrs now?) has scoliosis!
Good Luck
and remember you are not alone- it seems there are loads of us Su T x
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  #27  
Old 8th March 2010, 08:16 PM
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Default Re: Went To Scoliosis Sos Today

Hello Sue

Thank you for posting your story and experience, I'm sure it will be of great help to others who are considering following the non-surgical route. I'm very pleased to hear how positively the exercises impacted on your posture and quality of life.

We would always advocate that members remain under the care of a scoliosis specialist, even if they follow a non-surgical route, since often they are young people at risk of rapid progression during adolescence - I think you might be out of that bracket now though
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  #28  
Old 8th March 2010, 08:16 PM
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Default Re: Went To Scoliosis Sos Today

i'm glad that there are positive outcomes from the treatment. We took our son to see both the clinic's in london. we did like Scoliosis SOS and seriously thinking of taking my son there. (only problem was they were very pushy for signing up even after explaining the situation school/work etc). has anyone had bracing with the treatment?
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  #29  
Old 8th March 2010, 09:20 PM
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Default Re: Went To Scoliosis Sos Today

Sounds like Nirvana

My eye sight seems to be failing me these days so if i missed it i apologise, how much did you say it costs for this treatment

You see the last gym i joined was free to be a member and was then pay as you go

Cheers

Mark
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  #30  
Old 9th March 2010, 11:16 AM
Sue T Sue T is offline
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Red face Re: Went To Scoliosis Sos Today

Quote:
Originally Posted by mark View Post
Sounds like Nirvana

My eye sight seems to be failing me these days so if i missed it i apologise, how much did you say it costs for this treatment

You see the last gym i joined was free to be a member and was then pay as you go

Cheers

Mark
Sorry Mark I had no intention of 'misleading' anyone regarding the cost of the treatment at the SOS Clinic- I suppose I got rather carried away, I justify the cost to the price of an annual subcription to a gym to myself(I've actually never joined one! (SO what do I know?) too embarassed about my back!) I just wanted to put things in perspective, as I feel I now have an investment for the rest of my life.
I was just so thrilled at finding something that was so amazing for me after years of progressive pain I wanted to share my discovery with others who unfortunately have a similar condition! YES! it is expensive BUT for me I'm more in control of my life than I've been for years.
Regards Su T x
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