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Beanstalk
10th June 2009, 10:32 AM
I'd love to hear about some positive outcomes from non-surgical treatment of scoliosis. My daughter was diagnosed by chance six months ago and seeing her x-ray shocked me a lot. Her upper curve has progressed seven degrees in seven weeks and surgery is the only thing I ever hear about.

We do yoga daily and go to the osteopathic centre for children. The yoga is tailored to her, and designed to strengthen weak muscles and stretch tight muscles. She's determined to do Schroth intensive, starting soon. The attitude is that she has to be an athlete, racing her curve, strength and straightening being the goal.

The consultant dismisses all of this, and I know the conventional wisdom says a curve over 45' continue to progress. It has so far. I'm hoping my kid will buck this trend with hard work and focus.

So, anyone able to tell me about positive outcomes from sheer hard work? I was interested to read this:
http://www.nytimes.com/2004/03/14/arts/dance-the-paradox-of-the-self-effacing-diva.html

thanks

BeckyH
10th June 2009, 11:24 AM
hi beanstalk, welcome to SSO.

i noticed in one of your other posts that your daughter's under Mr Tucker - a few of our members have been treated by him now, including myself.

your daughter's case sounds similar to mine and it is alarming when curves progress fairly quickly but unfortunately that's what tends to happen in adolescence as progression usually co-incides with a growth spurt. when i was diagnosed at the age of 14, i'd have done most things to avoid surgery but unfortunately given the degrees of curvature at the point of diagnosis, surgery was always inevitable.

one of the huge positives in this is that i had a consultant who was happy to go with what i wanted in terms of timing the surgery, and this in turn gave me the chance to get used to the idea and mentally prepare myself for it. i also know that in such a young patient, such an aggressive move as surgery can seem extreme, but decades of previous cases have shown that untreated scoliosis has long term detrimental affects on the patient's health.

a lot of non-surgical techniques are largely unproven, because they are tried by a smaller number and their efficacy is in doubt. this is a sensitive subject for many people, because there have been accusations in the past of therapists taking advantage both emotionally and financially. bracing and schroth haven't suffered from this (bracing is frequently used as a temporary measure as well as a corrective device) but the major problem seen with non-surgical therapies is that once the patient is into adolescence, the effects are very easily reversed.

i am by no means criticising your approach: i think it is admirable, because it is by no means easy. having been through it, surgery is not a quick fix either, but the difference is that it has a higher success rate. a lot of people get freaked out because they read about loss of flexibility and that you are forever banned from doing this, that and the other. these things are no longer true. our members alone are proof that anything is possible: between us (post-surgically) we have completed abseils, skydives, skiing holidays, equestrian competitions and many more physically-demanding activities.

the doctor you are being seen by is one of the best in the country, and scoliosis is all that he does. i wish you all the luck in the world, i hope that you are successful in your goal. but whatever happens to your daughter, we'll be able to support you and offer advice.

France & Amelia
10th June 2009, 06:10 PM
Hi just out of curiosity how old is your daughter??? Mine is 13 and has been waiting over ten weeks for a brace. One of my concerns is that the curve could have potentially increased whilst waiting. And obviously this could then put her into the surgery bracket.

Kind regards

frances

Beanstalk
10th June 2009, 07:17 PM
my daughter is 13y6m, and I was told bracing was not an option

best

Amazed Jean
10th June 2009, 08:18 PM
Hello Beanstalk - I just wanted to send a hug.

greenhouse12
10th June 2009, 10:46 PM
;) Hi Beanstalk !

Firstly , you should be proud of yourself supporting and seaching the best treatment options for her care .Normally there are only three options in scoliosis treatment
1)Observation 10-25 degrees
2)Bracing 25-40degrees
3)Surgery 40 degrees and upwards

Your daughters talk about becoming a very fit athlete "yes" probably will improve her core muscles which can help support the spine.There are unusual treatments over the internet which might be worth a shot , but i wouldn't recommend a chiropractor at this degree because this actually can damage spine more than it can do good .

She should try sports that are not straining her spine more like swimming , yoga , pilaties and walking which works most muscles in body .

Hope i helped
Good Luck !

Dingo
12th June 2009, 09:40 PM
Beanstalk

Check out this thread and watch the video.

Torso Rotation Strength Training for Scoliosis (http://www.scoliosis-support.org/showthread.php?t=7791)

Studies find torso rotation to be a consistent home run. It's easy, it's quick and it's effective. In five or ten years it will be the way mainstream doctors around the world treat all but the most severe Scoliosis.

Beanstalk
13th June 2009, 12:40 PM
thanks for that dingo

It seems to me that what scoliosis gives you is an awareness of the body that most people don't consciously have. It focuses you on how the body is working. Of course, this can become a focus on how the body is 'wrong'. What appeals to me is the rethinking about the power of the body, and about what is beauty, what is 'normal'.

Exercise regimes can clearly help, and they allow people to have control and input into their own wellbeing - scoliosis is just a platform. This is of course true of everyone. a positive and active attitude to maintaining physical health is a good idea. For some reason not taking this attitude seems to be considered a luxury, so being obliged to take it due to a condition such as scoliosis can feel like it's just too much, almost as though the right to slob out is truly desirable, that laziness is an objective in itself. Perhaps this comes from indolence and wealth being linked.

Surgery can effect great beneficial change for those with scoliosis. However, it's possible that an interventionist and paternalistic attitude can reduce those living with scoliosis to a passive role, and this is likely to be unwise. I've been told that physio is not necessary after surgery for scoliosis, and so far have been told that there is no point attempting to address my kid's condition through exercise. I realise that I can find it hard to take instruction, still, yet informing me and my daughter that there is nothing that can be done for her condition outside the surgical theatre can only have a negative impact. In addition it's likely to increase the burden of responsibility on medical staff who are already overstretched.

I could go on, and probably will, I am waging an ongoing internal debate...

tonibunny
13th June 2009, 04:05 PM
Hi Beanstalk,

In my experience, physio isn't necessary after surgery (beyond the initial post-op period) because we're able to take part in normal sports and activities, which keeps us healthy and our backs strong. I guess it could be argued that physio itself is interventionalist, because then you're dependant on a physio to tell you what to do. Surely it's much more empowering to get out there and keep yourself fit yourself, doing things you enjoy?

Beyond bungee jumping, I haven't heard of anything that post-op people haven't been able to do. My friends with scoliosis have been doing such things as paragliding, abseiling, ballet dancing, competitive gymnastics, rock climbing, horse riding, cycling, and weight lifting. It's all very encouraging to people facing surgery now! :)

Anyway, good luck! Obviously an unfused spine is better to have than a fused one, so it will be amazing if your daughter can avoid surgery.

Toni xx

titch
13th June 2009, 04:39 PM
I'd add to that to point out that actually, aggressive physio is not only unnecessary, but actually undesirable following surgery. It is no coincidence that the top revision surgeons in the US, who used to routinely refer their patients on to physiotherapy at the earliest opportunity after surgery no longer do so, and in fact are generally opposed to physiotherapy before the spine is thoroughly healed - at which point most people no longer feel like they need it, because as you say they've started to get back to sports and other things and are generally leading a fairly normal life.

It can certainly do no harm (other than to your wallet) to attempt a non-surgical route, and it may be effective in some cases. However, I woul always recommend to anyone who follows this route, to remain under the care of an orthopaedic scoliosis specialit and have regular follow up to assess any changes to the curvature. Good luck wih it all :)

Eve's Mum
17th June 2009, 01:50 PM
I can give you good news and bad. Eve, who's ten, was diagnosed with a 45 degree curve almost exactly a year ago and surgery was the only option. I know there are loads of people on this site who've had surgery and it's been a good outcome and I take my hat off to them for facing what is undoubtedly a major operation, but we didn't want this for Eve and more importantly, neither did she. I had an operation when I was thirty on my knee after a horse-riding accident and had screws put in - for five years it was great and then the pain set in and some days I couldn't even walk downstairs. Actually the only thing that keeps my body (and mind) right is exercise and pilates, and lots of it, but God I have had to work at it.

Assuming Eve lives to be 70, that rod has got to stay in her spine for 60 years. Sure, she'll have a straighter spine but what about her flexibility when she's 30, 50, 70?

So we did this instead. She's braced (a cheneau brace) for 22 hours a day which sounds brutal but is infact nowhere near as bad as I thought it would be. She also does Schroth exercises five days a week for an hour before she goes to school. When she gets home from school, off comes her brace and she goes swimming, dances, plays tennis - gets moving.

Is it easy? No. Do I sometimes cave in when I see her sleeping soundly at 7am when she needs to be getting up and doing her Schroth exercises? Yes, but less so now. I exercise with her (pilates) and we encourage eachother.

Is it working? Yes, for now. Her curve's reduced to 30 degrees, her rib hump has stabilised and her pelvis, which was out of alignment, has also stabilised. But I'm aware that she hasn't yet hit her puberty growth spurt although in the past year since she was diagnosed she has grown 8cms. If the curve proves so aggressive that the brace/exercising cannot hold it then I guess she'll have to have surgery. But when she's 40 I want to be able to look her in the eye and say, well, we tried.

If you go down this route then be prepared for lots of hard work, both for yourself and your daughter but you may also find unexpected things which give you great joy. I watched Eve climb up a rock face the other day and encouraged another girl to do the same. She is so strong both physically and mentally and I know she has turned her scoliosis into something she manages rather than something which manages her.

See if you can get hold of Matha Hawes' book 'Scoliosis and the Human Spine' - it changed the way I thought about the condition.

Good luck.

Beanstalk
17th June 2009, 07:16 PM
Hey Eve's mum

first diagnosis was 48 for us, increasing to 54, I am really impressed at Eve's reduction and your hard work

we're also going to the osteopathic centre for children, fantastic people

we're already up and at it every morning - you too - brilliant. I decided to get fit and sort my bad knee last December, and had no idea I'd get this kind of motivation... it's working. As for my daughter she has just said to me 'I can do it you know' in response to my saying the schroth course she's about to start is going to be tough. It is a lifetime challenge. I am so with you on the attitude.

It seems like my lovely is probably at the end of her rapid growth, and she's been positive from the first viewing of her x ray. These kids are brilliant.

I'll check out that book, thank you very much for your response.

violasmith
17th June 2009, 07:53 PM
Hi Beanstalk,
I'm finding this thread fascinating. I was diagnosed with Ideopathic Scoliosis when I was 11. The thoracic curve was in the late 50/early 60 degrees (it was a long time ago, and I cant remember exactly).
Anyhow, in the depths of darkest Devon in the early 1970's, there wasn't anyone able to do such surgery, and Rods etc hadn't got this far. I had traction/plaster cast twice and a Milwaukee Brace for 3 years. The curve was not reduced, but it stabalised and didn't get worse.


The nub of my story is; although I have a significant curve and rib hump, I have also had a really fabulous life. OK I've never been on a roller coaster (thank heaven, I would only throw up!) but I went to uni, got my degree, lived life to the very fullest in my 20's when I was young, free and single!!, got married, had a son, have had a thoroughly fulfilling career and have been emotionally and financially independent all my life. I have kept fit, and although now in my late 40's I am having problems (see my threads in General discussions) I have had a lot of good times as well.

No one can tell you how to live your life. If your daughter wants to have a go at dealing with her back without surgery, then you're right to support her every step of the way. If later in life she changes her mind, there are surgeons who will operate on adults (there are plenty of people on this site). What's important is that she understands she has the right to change her mind, and that the support will still be there for her. She should also be able to have regular checks.

I hope I've given you some options. Good luck to you both
Nicola

mark
17th June 2009, 08:46 PM
Hi Nicola

I read your post with interest, it seems some kind of interventions did make its way down the South West (although its shame the rod did not). Neither managed to make it north of the Watford gap so i remain an unfused, in pain with a twisted train wreck of a body. Both physically, psychologically and mentally scared.

To me, i will never forget the first time i went to see a consultant at the age of 14, it was 1984, i had just been picked up from another morning of merciless bullying to be driven to the consultants to be told by him to grow up, chin up, your not having surgery, i wasn't even told what i had, to then be driven back to school for bullying round 2.

No mentions of physio, no mention of braces, no mention of see you in 6 months (found out 20 years later that the entire consultation was recorded on a post it note size piece of paper).

Went through entire high school and college years thinking i was the only freak on the planet.

Physical pain, i've read some interesting posts by people who have had rods and fusions talking about the pain later on in life. Well from an untreated spine i can tell you the pain is no less. I've had two nervous breakdowns in part due to the chronic and acute pain i have suffered from daily for the last 30 odd years.

Just wanted to put the unfused, untreated nearly 40 something point of view

I guess what im trying to say is as well as the psychological pain the physical makes the trauma double. I know i have issues, several suicide attempts and two six months of work after breakdowns, i wouldnt wish em on any one. I would just like to ay to parents, don't just think about the physical aspects of this condition the mental scars last just as long and in my experience run a lot deeper

I hope that makes sense, i know what iwant to say but im struggling to make the words come out

mark

violasmith
22nd June 2009, 04:17 PM
I fully understand what you're saying Mark. I'm certainly not saying that having the unfused spine is a breeze, and to be honest, I left out info about the very dark times in my life:cry:. I am all too aware that life is extremely hard for us, but I think if the young lady concerned has a choice, she should be allowed to make it. I've spent years asking for a surgical solution, but there isn't one for me now. I've also spent years going to various orthopaedic specialists I thought understood my condition, only to discover they do knees and hip replacements. There is certainly a lot to grumble about; like why don't these people say they're not qualified to make judgements and send us to people that can?:rant: I know what you mean by nervous breakdowns and pain; like you I've had two (probably three if honest), and been really low (I now take Prozac). Having said that I was not expected to do anything with my life and was told I would be in a wheelchair by the time I was 30. I'm 47 and still walking (just), have taught music for over 20 years and had pupils go on and really achieve great things, and I found a man who accepts me the way I am. :violin:I just wanted people to know that there can also be really great times as well.
Big hug to you Mark:squeeze:- you are a very special guy, and I think we're all fortunate you are on this site.
Viola
xx

mark
22nd June 2009, 04:32 PM
Hi Nicola

What a lovely positive post, i wish i was so elequant. What you have just said is more or less what i was trying to say. Your life sounds its kind of run so like mine in many ways. I wish i was as strong as you

Mark

Big hugs to you too:squeeze:

nef
22nd June 2009, 05:54 PM
I'm in same position, 16 year old daughter with 44 degree and 34 degree curves I have booked at the Scoliosis (with Erica Maude's team) centre in london, after researching that an intensive treatment with the Scroth method is likeliest to optimise results. Is there anyone who has done it and made a difference that is sustained? I would love to hear

nef

mark
22nd June 2009, 09:34 PM
Hello nef, if you search this forum there are loads of threads and posts about that clinic. Some are good experiences some are bad experiences.

Welcome to SSO, i'm sorry to read of the reasons why have had to find this little community but know you
have a hope we can help.

A couple of things about scoliosis sos, the clinic does not practice the Schroth method in its entirity, it uses a method they call Scoliosis Gold, which seems to be a new method and therefore does not have any published data on its success or failure rates.

You have to continue to do the exercises every day for the rest of your life to maintain any correction they can attain. They don't measure the cobb angle so if you are thinking of going down this route then you should still stay under an scoliosis surgeon at least for yearly check ups to monitor the curve.

The last issue maybe the cost, its not available on the nhs so it will cost you approx 4 grand for the treatment. Like i say search this forum there are loads of posts by members old and new on this clinic.

I wouldn't want to influence you either way as i have kyphosis which is structurally different to scoliosis and at my stage in life 4 grands a hell of lot money to shell out.

To be honest i couldn't be bothered what with everything i have got going on im my life (family, pressures of work etc) to do the daily exercises, even if it was for only 1/2 an hour a day. I get my endorphins from other forms of exercise

violasmith
23rd June 2009, 07:13 PM
I think you are as strong, if not stronger. :niceone:

Beanstalk
25th June 2009, 05:19 PM
thanks viola smith and mark

I'm not trying to cock a snook at anyone, and I am pleased the option of surgery is there. It's one my child would rather avoid and so that's the route we're taking right now.

Since she was diagnosed I have discovered I know eight people with scoliosis, two adults who haven't had treatment and are suffering, three AIS and three who live with it without too much problem as long as they exercise. I knew about the condition before, but imagined it was rare.

Right now my kid is working her guts out doing physical therapy, day three, seventeen days work to go. I'll let you know how she gets on, right now I'm feeling optimistic, not only because of the therapy, but because she is very serious about making it work. She's talking about how she'll manage in situations outside the gym, what various forms of exercise will help through her life. That is a 13 year old talking (in between being a big slob and living on facebook).

She's also keeping hospital appointments and listening to opinions of people who have much more experience of scoliosis than she has. She is listening and she will be fine.

I am so grateful for all the responses. Brilliant. Thanks.

GillyG
25th June 2009, 10:45 PM
Sounds like you have a sensible and wise daughter there Beanstalk, I wish her all the very best in managing her scoliosis with exercise, but I'm relieved to hear she is still happy to be monitored 'just in case' :)

mark
26th June 2009, 12:12 AM
Hi Beanstalk, i know you are'nt, and my heart goes out to you, i don't what i would be like if my daughter was afflicted with my curse, your a good mum, your doing the best by your child, i can see that, what renshes my heart is these private clinics who promise the earth and deliver nothing, my heart goes out to you, i mean just look at my sig picture, thats what happens when things get left, i spent my life wishing it away. I really think you parents who say no and push and push are wonerful, i some times wish my parents did but they didnt and i dont blame them, i just hope and wish that all th efforts you put in work but i have a nagging thought that i hope you stay under a specialist who can monitor the curve and if your best effotrs dont work they can help.

If you want to read about a fucked up dude, read my sig, i'm a great example of what happens when you get left on the scrap heap, and i'm sorry for having a go in a previous post. it wasn't anyhting against you its just me i'm fragile

take care

mark

crkcallie
28th June 2009, 01:31 AM
I have severe scoliosis and I cannot have any surgical intervention. I have to do yoga stretches every day and I also use The Miracle Ball Method in conjunction with the stretches, to get the best stretches possible. I have had luck with it so far and am continuing to do so to straighten my back.

Beanstalk
11th July 2009, 12:24 PM
Hey
update on wonderful child is that her curve has reduced by over 21 degrees. She is completing her third week of Schroth at ScoliosisinLondon. I will post the x-rays in a while, I'm not brilliant with that stuff.

She will be monitored at Guys and we hope they will see that help can be given in this way. At least people should have the chance. Our amazing bodies are not hard, unchanging structures.

Everyone says it: my kid's motivation to change has been instrumental in this outcome. It's been powered by the series of shocking bits of information received, about the possibility of continuing deterioration in her spine. She is hugely fortunate that her AIS was spotted at a visit to the GP, as the timing has been key.

She is clear that she needs to be an active part of the solution.

Best wishes to everyone. I am a very happy mum.

tonibunny
11th July 2009, 12:30 PM
Congrats Beanstalk, that is great news! Good luck to your daughter, I hope she can maintain her fab correction. Has she been learning under Joanna Slup? I don't know much about her but she sounds very experienced in Schroth.

Beanstalk
11th July 2009, 12:42 PM
Yes, Joanna is our gal. She is very dedicated and matter of fact as well as caring. We're hugely grateful.

stana29
19th July 2009, 11:09 PM
Hello,
Beanstalk's and my daughter exercise under Joanna Slup and she is great.
You should see Jessie (7) and Beanstalk's daughter (13) exercising together on wooden wall bars (both having curves different direction), what an inspiration to us all!
Those girls rock and I am so happy that your daughter's curve decreased, her back certainly looks fantastic!
Jessie loves working out with you daughter!
Good luck to you!
And in regards to Joanna, she is highly recommended by me. Schroth method to me looks like the most logical method I have seen for scoliosis.
Stana