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  #46  
Old 12th March 2010, 12:51 PM
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Default Re: Went To Scoliosis Sos Today

Nice one Carol

I knew this little old brain of mine works sometimes

I know how passionate you are and i love reading your posts on it becasue it really shows that surgery is not always the answer

Thanks once again, now i am of to check out the links you provided

Take care

Mark
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  #47  
Old 22nd June 2010, 11:22 PM
Dahne Dahne is offline
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Hi Sean,

I am planning to go to SOS in Suffolk in October. I've been doing a lot of research on the clinic and the area -- it seems lovely. How are you doing in maintaining your progress?

Tucker
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  #48  
Old 1st July 2010, 05:02 PM
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Quote:
Originally Posted by Sealy View Post
....but some doubt has crept in?
i was thinking the same
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  #49  
Old 21st July 2010, 11:52 PM
AmandaS AmandaS is offline
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

My daughter went to Scoliosis SOS a few years ago. She kept up with the exercises for a couple of weeks then she gave up. I feel the whole thing was a waste of money and we are now left with hundreds of pounds worth of unwanted equipment.
You have to really believe and be dedicated to do the exercises everyday for the rest of your life!!
Amanda
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  #50  
Old 22nd July 2010, 12:31 AM
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Hi Amanda

Welcome to the forum, sorry to read about your daughter, do you have any thoughts on what you are going to do know, are you under a NHS consultant, if not i strongly recommend that you ask your doctor to refer you to a specialist spinalist surgeon, it won't cost you anything and he/may be able to recommend some more managable exercises or refer you to a NHS physio

Sorry for what has brought you to the site but now your here i hope we can support you and your family on your scoliosis journey

Is there any chance of selling the stuff back to the place you bought it from, you may, at least be able to recoup some of your out lay

If i am not being too nosey, can you let us know the experiences that you had at the clinic and describe some of the exercises that your daughter needed to do to maintain the correction that she achieved

Once again welcome to the wonky world of SSO

Take care

Mark
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  #51  
Old 15th August 2010, 10:49 PM
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Does anyone of you who have had an operation for scoliosis before had any experience with physiotherpy with the scoliogold method?
Thanks
stavroula
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  #52  
Old 15th August 2010, 11:15 PM
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Only what i have read on the internet
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  #53  
Old 15th August 2010, 11:33 PM
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Does anyone of you who have been previously fused has any experience with the scoliosis SOS?
thanks
Stavroula
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  #54  
Old 15th August 2010, 11:53 PM
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

i can't think of any of our members off the top of my head who have had surgery and then done this treatment. it certainly wouldn't be advisable in the early post op stages. i think your best bet is to phone the clinic or a practitioner and ask if they've treated any fused patients, and whether it would be possible to speak to them about their experiences.

the only thing which can anatomically and permanently alter a fusion for the better is further surgery, unfortunately (it is, of course, possible to break the fusion unintentionally through an accident or injury) but of course physiotherapies and alternative therapies can offer pain relief and coping strategies for some patients. if you're experiencing problems with an existing fusion, i would urge you to in the first instance seek the advice of an experienced scoliosis surgeon. and, especially if your fusion is damaged/compromised, i would steer clear of exercise therapies until the fusion is stabilised. at all times whilst undergoing alternative treatment, it is important to continue to be monitored by a conventional practitioner.
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Diagnosed in March 2001 by family GP after my mum noticed an asymmetry in my spine. Referred to a consultant at the RNOH, Stanmore and started attending consultations for x-rays twice a year. Prescribed a TLSO brace to be worn 16 hours per day. Began with double major curves at approx 48 degrees. Offered surgery in 2003 aged 16 and declined to continue with school. Requested surgery in 2005 instead. Had T11-L3 fused on 16th July 2005 and haven't looked back! Released for all activities in March 2006, having been driving and riding horses with consultant's permission since 7 weeks post op.
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  #55  
Old 19th August 2010, 08:44 PM
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

I hope this works out for you, I would try anything if I thought it would help regardless of cost, Goodluck
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  #56  
Old 19th August 2010, 10:25 PM
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Red face Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Thank you very much. The first week is almost over. My muscles are collapsed but I think they start working now. I am a little bit afraid because I have the fusion and I am not in the same position with other patients but my fusion was 26 years ago and it is not damaged.
Hope it works out for me.
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  #57  
Old 25th August 2010, 09:14 PM
Sarajs Sarajs is offline
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Hi there, I'm really glad I found this post because I have just joined to ask precisely about the SOS clinic and whether it is worth the money.

I am a 29 year old woman, diagnosed with scoliosis but i think the curve is not too bad 17 degrees or so, I don't know all the details, I suppose because I've not had problems up until now. I used to go once a year until 18 to have xrays but the doctors wouldn't suggest anything and just sent me on my way. Now I have pain, I'm uncomfortable sitting, standing, sleeping and doing any kind of domestic chore and self-conscious because of the career I am pursuing. Doing a google search to find out what I can do to reduce this pain and improve my posture I found the scoliosis sos clinic and went to consultation in london - which cost 25. Yes the meeting was interesting but I can't help thinking at 3900 for a four week course it is stealing money! And I don't have it. I was wondering if I found a good Alexander Technique teacher and had one on one classes it might be cheaper and more beneficial? I really need to do something as I feel so uncomfortable now.

What do people suggest? Thanks , I'm grateful of any info and will continue to read the posts already here as just found there are more!
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  #58  
Old 25th August 2010, 09:21 PM
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BeckyH BeckyH is offline
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

hi sara, welcome to the forum

which hospital were you previously under the care of? i'm sorry you're having problems now, but i think it's worth you getting a referral to a scoliosis specialist for a number of reasons: firstly, so that you can learn more about the magnitude of your curve(s) - this is vital going forward, so that any progression can be assessed; secondly, a different doctor's opinion may help you; thirdly - it's important to be seen by a scoliosis specialist whilst undergoing any alternative treatment, as these are the only people qualified to measure your curve.

if you need help on where to seek a referral, we can provide that sort of information. seeing a surgeon doesn't mean you'll be having surgery, but it does mean you'll be accurately assessed.
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Diagnosed in March 2001 by family GP after my mum noticed an asymmetry in my spine. Referred to a consultant at the RNOH, Stanmore and started attending consultations for x-rays twice a year. Prescribed a TLSO brace to be worn 16 hours per day. Began with double major curves at approx 48 degrees. Offered surgery in 2003 aged 16 and declined to continue with school. Requested surgery in 2005 instead. Had T11-L3 fused on 16th July 2005 and haven't looked back! Released for all activities in March 2006, having been driving and riding horses with consultant's permission since 7 weeks post op.
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  #59  
Old 25th August 2010, 09:22 PM
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Hi Sara, welcome to SSO

I'm really sorry to hear you're having these troubles. I think it would be worth your while seeing your GP to get a referral to a scoliosis consultant (a doctor, not a physio or chiropractor) who can assess your back as it is now, just in case it has progressed at all since you last had an x-ray. It isn't likely, given that it was 17 degrees when you were a teenager, but it's worth making sure - especially if you decide to spend a lot of money having treatment!

All sorts of physio can help improve pain and posture, and you may be able to get referred on the NHS for this. Some of our members have found the Alexander Technique really helpful, so hopefully they'll be able to tell you about that.

Welcome again,

Toni xx

ETA Snap, Becky
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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.
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  #60  
Old 25th August 2010, 10:38 PM
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

You might want to pm carold, she is really into Alexanda Technique and knows loads about it, plus she's a really nice women as well

Mark
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