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  #76  
Old 23rd March 2011, 09:26 AM
modimaclac modimaclac is offline
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

When we discovered that our daughter, who was then 14 going on 15, had a severe double scoliosis, she was devastated, as she didn't want to have an operation to put a rod in her back, which would give her a rigid back for the rest of her life.

She is a very keen climber, at competition level, and didn't want to have to stop this sport, which she would have had to do if she had had the operation.


She looked for advice and help or at least comfort on various internet forums, and they only made her more depressed and panicky about the future.


The orthopedic specialist we saw was in "wait and see" mode, wanting to see her every six months, but without recommending physiotherapy or anything else to ease the pain and discomfort. Meanwhile, the worst curve, in the lumbar region, worsened, and the other one, higher up, lessened somewhat.


So I searched the internet, and found Scoliosis SOS; I contacted them on the website, and subsequently had a very detailed conversation with someone from the Clinic in Suffolk. Despite the cost (very high), we decided to take our daughter for a two-week treatment in August 2010, and then for another two weeks in December.


It was a heavy schedule, 5-6 hours a day, five days a week, but her back had begun to show improvement by the time we left.


Our daughter's perseverance (fuelled by her determination not to have an operation) has paid off : her posture has greatly improved, and she doesn't experience pain any more. We haven't yet had new x-rays done, but whether the actual curvature has diminished or not, her improved posture and the confidence she now has are most encouraging.


She is aware that she will probably have to do the exercises for many years to come, but she herself feels the improvement is worth the trouble and effort.


Because we had gone over to Suffolk from France, we couldn't bring back the most expensive and bulkiest equipment, the espalier, but we brought back the rest of the equipment, and we have made an arrangement with a physiotherapist nearby, where she goes to do her exercises four days a week, for 45 minutes to an hour. She has continued with her climbing, which exercises her muscles in a symmetrical way, and she recently won a trophy in a regional competition!


We really feel the results have been worth the expense, and our daughter is pleased and encouraged, and determined to persevere, though admittedly she sometimes has to force herself to go and do the exercise session.


We found the Staff at the Suffolk clinic, in particular the therapists, very warm, friendly, and helpful, and our daughter formed friendships with some of the youngsters under treatment with her.


We will be returning for a check-up in June, by which time shen will have had new x-rays done, and will have seen the orthopedic surgeon again too.


I would recommend this treatment, though it is very expensive, but only if the child or adult is personally motivated to follow through with the exercise programme.


Otherwise it would be like consulting a doctor for a serious problem, and then not taking the medicine he prescribes. In that case, if the illness doesn't improve, one can't blame the doctor. If one had a chronic illness, which required taking medication for the rest of one's life, one would do that, not so? Well, this is the same kind of thing, only the prescribed remedy is regular exercise, and not some kind of pill to swallow.
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  #77  
Old 23rd March 2011, 10:08 AM
jnt jnt is offline
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

What is the minimum age for treatment does anyone know? Can a child be treated while wearing a cast?
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  #78  
Old 23rd March 2011, 10:18 AM
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

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Originally Posted by modimaclac View Post
She is a very keen climber, at competition level, and didn't want to have to stop this sport, which she would have had to do if she had had the operation.

.

As you say grit and determination is needed to undertake this course of therapy as is the case with surgical intervention

having the operation does not preclude you from climbing or an other out door sport for that matter, i'm just getting back into climbing, walking, mountaineering and football, hopefully next year i'll be back to the alps ready to tackle the Matterhorn and the Giants Tooth.

It may take a while to get to over the op, but if you have the grit and determination anything is possible

Welcome to the site and i'm pleased you had a positive experience

Please feel free to post the exercise regime your daughter has to complete, it would be interesting to read

Mark
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  #79  
Old 23rd March 2011, 10:45 AM
modimaclac modimaclac is offline
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

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Originally Posted by mark View Post
having the operation does not preclude you from climbing or an other out door sport for that matter,
Perhaps it doesn't in the long run, but she certainly would have to interrupt the momentum she had gained in her competition schedule, been out of commission for a number of months, and would have had to make a big effort to get back up to speed again.
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  #80  
Old 23rd March 2011, 11:04 AM
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Yes thats true, it takes a long time to recover from surgery, i'm pleased you found something that works for your daughter, i would imagine the exercises would also help to strengthen her core muscles so that can only benefit her climbing.

My point, probably not very well put, was having surgery would not prevent her from climbing
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  #81  
Old 23rd March 2011, 11:10 AM
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Hi Modimaclac, welcome to SSO

Please could you tell us more about the exercises that your daughter does? A description of what this technique involves would be helpful to a lot of people

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.
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  #82  
Old 23rd March 2011, 12:21 PM
modimaclac modimaclac is offline
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

I'll have to get my daughter to describe the exercises, because I don't know the routine myself.
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  #83  
Old 23rd March 2011, 12:24 PM
Angela Angela is offline
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Hi and welcome to the forum Modimaclac from another family living in France.
We are in central france, our daughter is being seen at the childrens hosp in Tours.

Glad to hear the course in Suffolk is working for your daughter, shame there isn't anything like that in France.

You said your daughters specialist was reluctant to recommend physio. We were planning to ask for some for our daughter at her next visit did you have to go private or did you get a referral from someone else?

Best wishes
Angela
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Daughter diagnosed with scoliosis in 2008 age 11. Thoracic curve 40, lumber curve 30. Wore a brace at night for 18 months. Growth now complete.
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  #84  
Old 23rd March 2011, 02:53 PM
modimaclac modimaclac is offline
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Hi Angela,

We are in La Rochelle, and it was our GP who recommended a pediatric orthopedic specialist at the hospital. The specialist didn't suggest any treatment at all. The first two times, he just said to come back in six months, with a new x-ray, and the last time, he said to come back in a year's time, which will be in June.


Our physiotherapist, when I showed him her first x-rays, said that such a severe scoliosis could only be treated by an operation. He didn't suggest any exercises or massages or anything.


When someone suggested that we take our daughter to a chiropractor, I asked the specialist's opinion, and he said it couldn't do any harm. But this chiropractor turned out to be a real quack, who did some mumbo-jumbo while waving his hands over her, so we didn't go back.


I also asked the specialist what he thought about the Scoliosis SOS treatment, printed out a lot of stuff from the website, and he said "go ahead, and if it's good, maybe we can introduce it in France" (!).


Our physiotherapist, when I called him from England to ask him if we could arrange for our daughter to use his equipment, said "but why didn't you talk to me about what you were going to do? There's a centre in Lyons which specialises in treatment of scoliosis!"


However, when I looked on that centre's website, there was a lot about evolution, and how we shouldn't be surprised that we have scolioses, because fish have them too, and as we are descended from fish, blablabla.... But apart from that, it talked only of braces and operations, nothing about exercises or physiotherapy.


So none of the treatment or travelling or anything has been reimbursable by the CPAM. However, once our daughter started going to the physiotherapist's rooms to do her exercises (for which he didn't charge us, since he wasn't working with her as a patient), he found out that with a curvature as severe as hers, she could be eligible for a 100% reimbursement of medical expenses... except it doesn't work for Scoliosis SOS treatments, but for any treatment, physio or anything she has in France.


Strangely enough, the orthopedic specialist at the hospital didn't even mention this possibility!


All the best!
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  #85  
Old 23rd March 2011, 04:23 PM
Angela Angela is offline
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Hi again, thanks for the reply.

Our daughters treatment including brace is all covered too by the CPAM, I'm assuming physio would be too if they agree to it.

She had regular 6 month check-ups and x-rays and now goes yearly as her growth is complete.

It sounds like your daughter is doing really well with her exercises, it will be interesting to see the improvement in the next x-rays. I'm surprised though no treatment was offered to you by the specialist, do you mean surgery as well?

I'll have a look at the scoliosis treatment centre in Lyon, sounds interesting.

Angela
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Daughter diagnosed with scoliosis in 2008 age 11. Thoracic curve 40, lumber curve 30. Wore a brace at night for 18 months. Growth now complete.
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  #86  
Old 23rd March 2011, 04:38 PM
modimaclac modimaclac is offline
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

The surgeon was just waiting from one visit to the next, to see if the curve worsened, but always with the sword of Damocles of the operation hanging over her head!

The CPAM accepted the application for 100% reimbursements without a quibble, so anything we do from now on will be fully reimbursed. Pity we didn't know about that before we went to Suffolk, because we could have applied for that to be at least partly taken care of.
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  #87  
Old 25th March 2011, 09:13 AM
modimaclac modimaclac is offline
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Default Re: Went To Scoliosis Sos Today

Quote:
Originally Posted by curvyclaire View Post
she said that she is now painfree and her curve is 10 degrees less.
@Mark: I think you read this too quickly: curvyclaire didn't say her curve was down TO 10, but that it was down 10, which I take to mean "10 less than before"...
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  #88  
Old 25th March 2011, 01:23 PM
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Default Re: Went To Scoliosis Sos Today

Can i ask why are resurrecting a post i made over a year ago. I noted the other day you were spending a lot of time searching on my name
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  #89  
Old 28th March 2011, 01:07 AM
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Default Re: Scoliosis SOS Clinic, Suffolk, Ipswich

two threads merged as they both discuss the same business
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  #90  
Old 30th March 2011, 10:19 AM
modimaclac modimaclac is offline
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Default Re: Went To Scoliosis Sos Today

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Originally Posted by mark View Post
Can i ask why are resurrecting a post i made over a year ago. I noted the other day you were spending a lot of time searching on my name
Sorry, I didn't notice the dates.

I'm not researching on your name, you just happen to have contributed to the threads I'm interested in...
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