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Beanstalk
14th July 2009, 12:42 AM
My daughter is in week three of schroth, we had a second opinion consultation last week and the x-ray shows a reduction of over 20 degrees. Everyone said it couldn't be done. I met another mother while at Guys who was interested in our result - her daugher had had the op, and I felt she would have at least liked to have had the option of physio.

I'm not kidding myself, I don't think physio would work for everyone, but it's working for my girl. Since her diagnosis last December all I've heard is that there is only one treatment and it is surgery. I would like to know who else on this forum would be interested in focused physio if it gives a chance to avoid surgery.

I hope I'm going to be able to add a poll to this posting. I would like to know if other parents would like to be offered the non-surgical route for their AIS children, as a first step - surgery would still be a back up. I'm not brilliant at this techy stuff and I'm not sure how to add a poll...

This is by no means a reproach to anyone who has taken the surgical route.

BeckyH
14th July 2009, 02:25 AM
i genuinely think your poll is interesting, and i try to keep an open mind about non-surgical approaches. it's over 7 years since i was diagnosed and i know a lot has changed in that time. i heard once that orthopaedics is far behind many other medical fields and is only just developing truly modern techniques. stumbling blocks along the way are inevitable.

i remember when spinecor was first widely publicised and there was a huge amount of suspicion (scoliosis patients have been taken advantage of in the past and many are wary of it happening again, particularly when the results can be as devastating as doing nothing and then losing quality of life at a young age as surgery no longer becomes an option). spinecor is starting to prove itself now, but i still think that bracing and exercise therapies carry a lower success rate, and as with surgeries this may be due to a lack of understanding of the underlying cause of the problem (because some people fail even if they follow all the instructions etc, this makes me think that unfortunately some of us are destined for surgery, and i don't just mean infantile or juvenile patients).

i'll be completely honest and admit that i hold a stronger hope for bracing than i do for exercise therapies in terms of correcting a curve and maintaining correction. i don't doubt that physio can help to increase mobility and decrease pain. when i was first diagnosed, i hoped that bracing would fix me. now, i look back and realise that it was too late for me and i was braced for a different reason.

i also think my perspective is different to yours: i made my decisions, i coped with them and i've come out the other side. i try to think about it if i were a mother to a child with scoliosis but i still don't know what i'd do. i think i'd do what everyone does and try to do what is best. with infantiles and juveniles, that is clearly to take an aggressive approach immediately, because not much else can be done. the temptation i think if i had a daughter whose pattern echoed mine would be to follow the route i took, because i'd know about magnitude of curves and what is realistic.

i'm in no way condemning what you do, but i don't think i would pressure my child to undertake a lifelong exercise therapy. i would allow them to be fully informed on all the options, but i think committing to these exercises for the rest of your life when you're only in your teens is something that most people wouldn't fully comprehend. it's like getting married at that sort of age, but more physically restrictive (in another thread i posed the question of what would happen if a patient were pregnant and so far this has remained unanswered).

i know it's very difficult to be a parent of a teen: they are mature in body and most think they are mature in mind too but aren't. plus legally you are responsible for them until they are 16, so technically you can force them into a lot of medical decisions, but emotionally it may not be so wise! i think i'm having a bit of an argument with myself here.

i think the conclusion to draw is that there is no quick fix to scoliosis, and for curves which aren't going to go away on their own or remain stable unassisted, there is a lifelong committment to make somewhere (either by having a fusion surgery or doing an exercise programme). both have pros and cons.

GloomCookie
14th July 2009, 08:27 AM
I tried absolutely everything I could in the way of physio etc when I was first diagnosed as I was in pain but because both curves were under 40 degrees I wasn't offered surgery, it wasn't even discussed as an option. There does seem to be this idea that consultants are scalpel happy and the first thing they do is recommend surgery but in my case that simply wasn't true.
I couldn't afford SOS, but I tried a whole host of other things over the years following my diagnosis. My curve went up over twenty degrees in the space of four years so I didn't really have a choice about surgery in the end!
I guess if you find something that works then avoiding surgery is great, but if I had had my op when they first diagnosed me things would be a lot better now in terms of both pain and cosmetic issues so I wish I hadn't let them send me away to do physio.

Beanstalk
14th July 2009, 09:28 AM
I tried absolutely everything I could in the way of physio etc when I was first diagnosed as I was in pain but because both curves were under 40 degrees I wasn't offered surgery, it wasn't even discussed as an option. There does seem to be this idea that consultants are scalpel happy and the first thing they do is recommend surgery but in my case that simply wasn't true.
I couldn't afford SOS, but I tried a whole host of other things over the years following my diagnosis. My curve went up over twenty degrees in the space of four years so I didn't really have a choice about surgery in the end!
I guess if you find something that works then avoiding surgery is great, but if I had had my op when they first diagnosed me things would be a lot better now in terms of both pain and cosmetic issues so I wish I hadn't let them send me away to do physio.

Hi there

Thanks for telling me about your experience.

It is obviously important to ensure that all cases are closely monitored, and that physio if used is tailored to the individual and effective. It seems that an important element of what my daughter is doing is learning about her own anatomy. In fact she has now started to correct my posture too.

Should tailored and informed physio have a positive effect on scoliosis it could offer a cost reduction in treatment and therefore be something the NHS would offer, which would stop financial considerations being a barrier. In addition, should it not be a complete answer, it's likely that there would be a benefit in terms of patient fitness pre- and post- surgery.

best wishes

titch
14th July 2009, 09:28 AM
I really, desperately, want to see proper studies of non-surgical therapies. If surgery can be avoided, that can only be to the good! And while things become increasingly complex as you get older (having surgery as an adult with a job to juggle and a family to consider is not something you can undertake as easily as being a teenager with no commitments), the surgical option remains there. It's only going to disappear in the very worst and most progressive of cases, and those are ones which should not be treated non-surgically without surgery already booked.

However, as I've stated in many places, I absolutely do not believe that for a child or teen non-surgical therapies should be pursued in isolation. It is *essential* to remain under the care of a surgical specialist as well - over the years I have seen too many cases of children ending up with truly massive curvatures, all while being told by the non-surgical practicioner that they've gone to in fear after being asked to consider surgery that the curvature is improving, even that "it has to get worse first before it can get better" or that "it's only getting worse as all the negative emotion leaves the body, it'll get better once all that is out, it's positive for it to increase at this stage". While the more reputable therapies will obviously be unlikely to behave like this, they are almost universally not measured by xray. It is undoubtedly possible to get an idea of the state of the back with non-radiographic images, but it's still limited.

It's entirely possible for an exercise therapy to teach a person to stand and carry themselves in such a way that for example they no longer lean to the side, but this does not necessarily mean that there has been a reduction in curvature. Don't get me wrong, if that results in better spinal balance, that's great, reduction in pain is fantastic, and a better balanced borderline spine is less likely to need surgery than a poorly balanced borderline spine. I'm not saying that no reduction = lack of success. But, I still believe that objective assessment alongside the more subjective assessment is essential.

I also remain bemused by the fact that the majority of non-surgical and exercise based therapies just don't do studies!! I actually find it deeply upsetting - there are cases we hear about, such as your daughter, where there clearly has been significant benefit. But we also hear about other cases where even residential therapy has utterly failed, and all too often it seems that the practicioners blame the patient! To listen to the claims made by so many of them, you'd think that there were no actual failures, and that extreme levels of success were actually the norm. I remain unconvinced, and the thing that makes me saddest about that is that the very valid scepticism that so many of us feel could well prevent people who would be likely to have success from undergoing the therapies. I also know that from a moral standpoint, if I truly had something which was widely successful in preventing the need for surgery, I would feel it absolutely necessary to ensure that everything was done that possibly could be in order to prove the level of success. I know that the vast majority of UK surgeons would be delighted if they could refer people for exercise based therapies in the knowledge that it would fix many of them. Considering the waiting lists, and that they are paid irrespective of whether they do a huge number of surgeries or a small number, they've no financial interest in maintaining a large population of surgical patients. A good idea of what sort of curvatures that are most benefitted by different therapies would also allow them to fast track those who are likely to get best results into the therapy as soon as possible.

As far as I can see, it is a moral imperative to demonstrate adequately the effectiveness of your therapy and endeavour to make it widely available, rather than only available to those who are the lucky few able to afford it. (Please note that I don't know what studies are planned by any of the non-surgical therapy providers currently!! What I have written is based on 10 years on forums where non-surgical therapists have consistently refused to do studies, for example Copes was regularly and publically asked to do studies and publically refused, despite the fact that STRS practicioners *did* actually take xrays, and thus could have done an objective study of the natural history of curvatures treated by them. It could well be that the current non-surgical practicioners of major systems *are* planning to do them - I very much hope so at any rate!)

I hope that doesn't come across wrongly - basically it's a long way of saying I am absolutely in favour of the idea of non-surgical therapies. I am positive that they work for at least *some* people. I want them to be more widely available, and for studies to be done to determine who they work best for - as it stands, we hear from utter failures, and from major successes. We have no idea what lies in the middle! I think we need to know that, and I think we need to get to a position (hence the studies) where the NHS can in confidence provide the therapies to patients without charge.

Beanstalk
14th July 2009, 09:55 AM
Hi Becky

My daughter isn't on this site, at the moment, however you may be interested to know that she was clearer than me that she wanted to avoid surgery. At no point have I excluded the possibility of surgery. She is 13 and an internet user, she researched independently, without telling me. I just tried to work alongside her to explore all the options, including exercise. What I did say to her was that nothing was impossible and she would be fine, and how proud I was of her. We got up and exercised daily together and went to appointments together. I don't have scoliosis, she does. As a parent I do my best, I don't claim to be a perfect mother, I donít need the pressure and I donít like to make false claims!

It is possible that my kid has made a change to her curve that will be permanent. I belive this due to her age and the speed of the change. The two consultants weíve seen have differing opinions about where she is at in her growth. If she is still in a period of rapid growth her vertebrae may develop more symmetrically, not so wedged. If her curve remains below 30 degrees there is a real possibility it will maintain at that level Ė statistics are that progress is inevitable with curves over 45, in my understanding. I think that she may keep it at a lower level through exercise. Is committing to a lifetime of maintaining fitness really a hardship? It differs from marriage and pregnancy as it only involves the individual themselves.

At no point was bracing proposed, so I haven't explored this.

Regarding pregnancy, my daughter asked if she would be able to have children, she understood that this could compromise her spine. She is 13. In fact pregnancy compromises the skeleton of any woman carrying a child, any risks can be reduced during pregnancy through understanding of anatomy and physical fitness.

Iím six months into researching this condition. I have been shocked at the lack of awareness, about my ignorance and the lack of information available through usual channels (GPs/hospitals/specialist clinics) even to those who have scoliosis. I want to explore ways to increase awareness and other ways to support those with scoliosis and the possibility of a range of supportive and effective treatments.

Thanks for your response.

GloomCookie
14th July 2009, 10:04 AM
Hi there

Thanks for telling me about your experience.

It is obviously important to ensure that all cases are closely monitored, and that physio if used is tailored to the individual and effective. It seems that an important element of what my daughter is doing is learning about her own anatomy. In fact she has now started to correct my posture too.

Should tailored and informed physio have a positive effect on scoliosis it could offer a cost reduction in treatment and therefore be something the NHS would offer, which would stop financial considerations being a barrier. In addition, should it not be a complete answer, it's likely that there would be a benefit in terms of patient fitness pre- and post- surgery.

best wishes

It's not that I think surgery is the only answer, and I agree totally about pre and post op fitness (I do a huge range of activities to keep my spine in good shape!) but as Titch pointed out there's just so little evidence that it's hard not to be sceptical when faced with the miraculous claims of places like SOS :(

Sealy
14th July 2009, 03:19 PM
i'm in no way condemning what you do, but i don't think i would pressure my child to undertake a lifelong exercise therapy. i would allow them to be fully informed on all the options, but i think committing to these exercises for the rest of your life when you're only in your teens is something that most people wouldn't fully comprehend.

Of course everyone would love to avoid surgery. Who wouldn't? But sometimes it's necessary. Personally, I'm thrilled/over the moon/ thank my lucky stars that we've avoided surgery. :D

Unlike adults, I honestly don't believe that for a growing child, exercise would have to be a life long commitment. Specific physio as an adjunct to bracing could be very effective as has been shown by doctors in Italy under the SEAS program. Like bracing, physio would come to a halt once skeletal maturity is reached. Growth should lock any correction into place -- at least that's the theory and its been my experience with casting and bracing. Physio is absolutely crucial with rigid bracing because of muscle atrophy ( not so much with Spinecor or night time bracing ).

I think the problem with the current system is that nothing is done until its too late. I don't blame the patients but rather the doctors who should know better. >:| It's a recurrent theme and change is absolutely necessary. I don't know how this change will come about -- lawsuits ???

BeckyH
14th July 2009, 04:42 PM
Of course everyone would love to avoid surgery. Who wouldn't? But sometimes it's necessary. Personally, I'm thrilled/over the moon/ thank my lucky stars that we've avoided surgery. :D

Unlike adults, I honestly don't believe that for a growing child, exercise would have to be a life long commitment. Specific physio as an adjunct to bracing could be very effective as has been shown by doctors in Italy under the SEAS program. Like bracing, physio would come to a halt once skeletal maturity is reached. Growth should lock any correction into place -- at least that's the theory and its been my experience with casting and bracing. Physio is absolutely crucial with rigid bracing because of muscle atrophy ( not so much with Spinecor or night time bracing ).

I think the problem with the current system is that nothing is done until its too late. I don't blame the patients but rather the doctors who should know better. >:| It's a recurrent theme and change is absolutely necessary. I don't know how this change will come about -- lawsuits ???

i think you're kind of right, sealy. however i still think that the huge problem with scoliosis is not knowing the cause of most cases, because that's how diagnosis gets missed a lot of the time. there's probably a clever term for it, but it's one of those things which can go totally unchecked, whereas a lot of conditions are more visible (i was going to say "orthopaedic conditions" but that's too much of an umbrella term because, for instance, it's impossible to miss leg or arm joint deformities which occur from birth or in childhood). i don't think i'm articulating myself very well today!

what i'm trying to say is that treatment and diagnosis are hampered by not knowing a cause: although congenital, infantile and juvenile scoliosis can be easily missed due to magnitude of curvature or it not manifesting itself to the naked eye, i think it's much more commonly missed in adolescents chiefly because either the teen lives in an environment whereby their body is not often on show, and because parents no longer wash and dress them (or also because people assume that a bit of asymmetry is normal!) it's a huge combination of factors when you begin to chip away with it. if it were ever discovered that it's as simple as all scoliosis has a genetic cause and kids can be tested when they're tiny, then i'd be more optimistic that all cases could be resolved non-surgically (of course the next step would then be to find something which completely cures the problem non-surgically, a proven method). all of this would be wonderful, but it's years off yet even if it does all come true!

i think you're right, in that there will always be scoliosis patients who need fusions, either because their curve(s) are so aggressive or because it goes undiagnosed into adulthood.

what i'm also saying is that it's not necessarily a problem with the system: i know the trend in the US (this is from reading people's experiences on NSF) is that the doctors are very scalpel happy and reluctant to brace a curve of any magnitude in an adolescent (i know you and many other parents have had to fight very hard to have children braced and/or cast) but i see that VEPTR is coming into use more too, but here in the UK if you get seen at the right hospital (mainly stanmore, i'm not sure about the other places) then bracing and casting (as well as growth rods) are used to good effect. some hospitals are still either ignorant or reluctant (possibly through lack of experience or expertise) of bracing so don't recommend it, but it's certainly not impossible to get here. in the UK, the chief problems in my mind are diagnosis being missed and lack of awareness amongst parents and GPs. that may sound overly critical, after all parents can't possibly be expected to know every single medical condition and watch their kids like hawks, that's not what i expect. but scoliosis is pretty common, especially in caucasians so organisations like the SAUK i think should be doing more to promote awareness of scoliosis and encourage parents to screen their kids.

maybe another difference between here and the US is down to kids here not having annual medicals - i don't know if i'm right but that seems to be fairly common in the US? we go to the GP here if we're sick, but you guys seem to take your kids for routine checkups? of course, we go for vaccinations too, but they don't come very frequently after infancy.

sorry for the long ramble, i started thinking aloud!

Beanstalk
14th July 2009, 05:27 PM
Interestingly I contacted SEAS and they advised that with a curve of the size of my daughter's she would most likely require five years in a brace, and the outcome would still be uncertain.

I have to agree about the doing nothing until it's too late. We were told to come back in six months, they called it 'observation', fortunately I am very bolshy and kept pestering, which resulted in a second appointment, and crucially this showed a rapid deterioration.

I am glad to see it spelled out about bracing, physio should be part of a bracing programme to avoid muscle atrophy.

Great debate going on, very stimulating.

mark
15th July 2009, 01:49 PM
I agree this is a very interesting thread and some excellent points have been raised. Talking exclusively from a schueremann's kyphosis point of view, because that is what i suffer from. I believe because my vertabrae are wedge shaped no amount of physical manipulation will reduce the curve i have to any significant degree, in my laymans view the vertebrae is structured in such a way that the only way to straighten and maintain that straightness is to shore it up and fuse.

I know what i am trying to say (but it might appear i don't)

I think that the spine may be able to manipulated to certain degree but if it is not continued then the spine will naturally move back to a position that it see's its self as being comfortable with and the only way to maintain any long term correctness you need to shore it up with some form of scaffolding

Sealy
15th July 2009, 02:31 PM
... i know the trend in the US (this is from reading people's experiences on NSF) is that the doctors are very scalpel happy and reluctant to brace a curve of any magnitude in an adolescent !


When one looks at scoliosis treatment in the U.S. itís almost impossible not to see the influence corporate America has in the operating rooms. Itís a billion dollar industry! Once you get past the image of a kindly doctor - the kind that you would find on a rerun of ĎLittle House on the Prairieí then everything becomes crystal clear. There is no incentive to treat scoliosis non-operatively because the money simply isnít there; at least not when juicy corporate dollars are funding research into novel surgical techniques such as non fusion surgery and others. Medical institutions are benefiting from these research dollars. Clearly, there has to be a demand for these surgical techniques and that simply cannot happen if patients are treated early and non-operatively.

titch
15th July 2009, 04:52 PM
I'm still unconvinced that it is as simple as many people would have it believed though - anywhere that the doctors do not work completely privately, and where they are run off their feet trying to keep up with people has a vested interest in working out non-surgical solutions. And yet, those solutions just haven't become apparent. Don't get me wrong, as ever I will stress that I am certain that the various therapies available *do* work for some people, and I am certain that they could work for more if things were better understood, or others could be devised that did. Nevertheless, given the amount of doctors we have across here, and the specialist centres that brace and cast including RNOH, GOSH and QMC and which have done studies on e-stim and the like, I honestly do not believe that the apparently scalpel happy nature of US surgeons is driven entirely by the corporate nature of medicine. People like Dr Boachie, Dr Errico (whose wife I have understood has ongoing problems from Harrington fusion and subsequent flatback) and many others at the top of their field would I'm certain be very glad to see the back of so much requirement for surgery. Bear in mind that for these top surgeons, it would have no effect on their income in any case!

The top docs are routinely having to pass simpler cases to much more junior surgeons - even with the best insurance, it takes weeks through to months to get to see any of them. Dr Hu is exceptionally difficult to get to see, there have been people complaining about it - of course as a UK person you're tempted to sniff at an American who is complaining because it takes 10-12 weeks to see someone when we wait at least 17 and just as likely see a minion, but nevertheless, it's still the case that they have far more than they can handle, just dealing with the really complex stuff.

I tend to feel that where the corporate aspect comes in is with the lesser known surgeons who are likely to churn out many, many short fusions for injuries. I was told in correspondence with a top US surgeon back in 2000, that "there are too many spine surgeons in the US". It's no surprise that there is such a history of "failed back", but even then it was by no means just the surgeons. Insurance wanted people up and about as soon as possible, so even when a surgery had been done perfectly well - and a single level fusion for a herniation, while delicate surgery, is *relatively* easy as far as healing goes - it was often undone by the person then being put into aggressive physioa nd far too early.

Basically, I'm by no means denying that the profitability and corporate nature of medicine plays its part, but I think in the case of scoliosis there is a lot more to it than that. What I'm continually driven to distraction by is the fact that it seems that even when significant money is thrown at studies of non-surgical treatment, those studies are not designed to answer what I would consider basic questions - that could well just be my layperson's ignorant view, as it may be there are good reasons for not trying to control for too many factors, but with bracing studies for example, I wonder why it seems that they never review the results to see if the successes came with particular types of curve, and whether there were others that were more or less guaranteed to fail - surely this can be retrospectively checked? There may not be any conclusive answers, but I'd feel better if I knew they were checking, whereas it seems all they look at is total percentage failure or success. It strikes me that if a bracing study showed, say, a 75% failure rate, that would be very off putting in terms of whether to bother with the stress and grief, but if it turned out that actually almost all of the 25% successes were from single thoracolumbar curves, you could feel much more confident in trying bracing if that was your curve type, and not need to worry "what if" by turning it down if you had a different curve type.

Sorry, seem to have gone off on one there! Hope it's readable anyway, and that you can tell I'm not disagreeing that there are big problems, just that I'm not sure that's enough of the story.

GillyG
15th July 2009, 04:53 PM
I agree this is a very interesting thread and some excellent points have been raised. Talking exclusively from a schueremann's kyphosis point of view, because that is what i suffer from. I believe because my vertabrae are wedge shaped no amount of physical manipulation will reduce the curve i have to any significant degree, in my laymans view the vertebrae is structured in such a way that the only way to straighten and maintain that straightness is to shore it up and fuse.

I know what i am trying to say (but it might appear i don't)

I think that the spine may be able to manipulated to certain degree but if it is not continued then the spine will naturally move back to a position that it see's its self as being comfortable with and the only way to maintain any long term correctness you need to shore it up with some form of scaffolding


I agree entirely Mark, on all points, and I think your post reads very clearly.

The irony of it is, even after surgery (during the relatively short time it takes the spine to fuse) the spine still continues to try and get to where 'it' thinks it should be, hence the initial loss of correction which often happens. A good analogy would be a roll of carpet or wallpaper, which always tries to roll back when you unroll it :p

I really don't know what I'd do if I had a young child with scoliosis ... if it was a relatively small curve I think I'd plump for trying the Spinecor brace in the first instance, since it holds the curve (even corrects it in some instances eg Sealy's daughter) yet still allows the muscles to maintain their strength (unlike the rigid braces).

mark
16th July 2009, 12:12 AM
Hi Gilly thanks for that, i was a bit nervous about posting kyphosis when the poll was specifically talking about AIS. I just wanted to give a different perspective, i mean after all its all spinal related.

To be honest one area that needs looking at is the psychological issues from non invasive techniques, surgical intervention and those who were left on scrap heep having been offered neither. You can only do that by talking to the patient. I think sometimes our feelings (i.e. the sufferer's) feelings are completly ignored at best and steam rollered over at worst.

I suppose i'm rambling of topic here

mark

lesleyr
2nd August 2009, 11:51 AM
hi becky, our 12 year old daughters recently been diagnosed with scoliosis, and ive just joined this site to get sum more info......i'm so confused and obv want to be sure we're taking the right course of action for her (which i doubt we'll ever be 100% certain about to be honest!), but after reading your post i at least have lost a bit of the guilt about it!.....the doctors have said that she'll need surgery in 6 months time, and in the mean time have to wear the brace for 23 hours each day (although he's not sure that'll make any difference whatsoever!), although she's only 12, shes quite mature for her age, and has point blankly said that she wants the op a.s.a.p ( although i'm sure this is just so that her constant pain will stop)....shes also said that theres no way shes wearing the brace for school so there poses another dilema for us!....do i encourage her to wear it knowing its going to make her uncomfortable and unhappy, (thats without the cruel jibes of many 12/13 year olds i expect!) and thinking it may not even help her at all, or just let her wear it at home?....keeping her relaxed, and avoiding embarrasment n ridicule with the possibilty that it may indeed have had SOME effect after all?......SO MANY QUESTIONS!!! thanks for your insight, so glad your op went well and your happy now in your recovery, heres hoping that our precious little girl will have such a successfull outcome!

Pancake
2nd August 2009, 09:55 PM
I voted yes to all options.

Research is needed on everything... surgery, bracing, PT, etc.

The evidence case in hand to date differs markedly for each of these but research is always ongoing. And just because certain treatment modalities have not been shown to work in controlled studies, that doesn't mean they don't work. And sometimes, there is a reason that studies aren't done.

Mark, kyphosis is NOT irrelevant here in my opinion. Your experience is just as relevant as are those for IS, connective tissue disorder scoliosis, etc. I think.

mark
2nd August 2009, 11:57 PM
I voted yes to all options.

Research is needed on everything... surgery, bracing, PT, etc.

The evidence case in hand to date differs markedly for each of these but research is always ongoing. And just because certain treatment modalities have not been shown to work in controlled studies, that doesn't mean they don't work. And sometimes, there is a reason that studies aren't done.

Mark, kyphosis is NOT irrelevant here in my opinion. Your experience is just as relevant as are those for IS, connective tissue disorder scoliosis, etc. I think.

Thanks for that Pancake, i guess your right, it doesnt matter which way the curve bends, if the curve is going to want to bend it will bend, its just when it bends and gets wedged like Scheuermanns does it poses the surgeon with an added problem, but then again all curves pose our surgeons with a dilemma, what is the best course of action, and what is best for the patient

my view is get the drill out, get the rods out, prepare the pedicule screws and start drilling and if you hit gold then i'm cured, if you hit oil then i'm going to be rich, if you hit dirt, well then at least you tried and if you advanced surgical techniques by experimenting on me then great, the ones behind me will have a head start, if you put me in a wheel chair, well that was my choice at least i gave myself a chance

Poo, poo, poo, i would not hold any messed up surgical intervention with me i would embrace it and if it meant one person following me got a better quality of life then my life would have been worth living

mark

tonibunny
3rd August 2009, 01:02 AM
Aye Mark, scoliosis can result in wedged vertebrae too, as you can see here on this x-ray from when I was 16, before I had my fusion extended (look at my L2 and L3 vertebrae):

http://img.photobucket.com/albums/v28/tonibunny/X_ray_aged_10_smaller.jpg

My lumbar curve wasn't even very huge either, it's only 55 degrees here.

Francis
2nd October 2009, 12:45 PM
My daughter is in week three of schroth, we had a second opinion consultation last week and the x-ray shows a reduction of over 20 degrees. Everyone said it couldn't be done. I met another mother while at Guys who was interested in our result - her daugher had had the op, and I felt she would have at least liked to have had the option of physio.

I'm not kidding myself, I don't think physio would work for everyone, but it's working for my girl. Since her diagnosis last December all I've heard is that there is only one treatment and it is surgery. I would like to know who else on this forum would be interested in focused physio if it gives a chance to avoid surgery.

I hope I'm going to be able to add a poll to this posting. I would like to know if other parents would like to be offered the non-surgical route for their AIS children, as a first step - surgery would still be a back up. I'm not brilliant at this techy stuff and I'm not sure how to add a poll...

This is by no means a reproach to anyone who has taken the surgical route.
Hi Beanstalk- Can you tell me where your daughter is going for the Schroth? Were you referred by a consultant at Guys? How long is the Schroth course and how much does it cost?
My daughter (13)has a 42 degree curve and our consultant is recommending we see him again in 6 months, with a view to considering surgery if there is a significant progression. While I am staying open-minded to the possibility to surgery I'd like to see if there's anything we can try in the meantime to stabilise the progression....Thanks

mark
5th October 2009, 04:25 PM
Hi Francis welcome to SSO, i hope you can find an answer to your daughters scoliosis that doesn't involve too much disruption to your lives.

SCP
3rd December 2009, 05:15 PM
I agree with everyone on this topic. The truth is, there is too much conflicting information out there, and it is too difficult to know what works and what does not work. One thing is certain however, and that is, bracing has been around for decades, and there seems to be little evidence of its effectiveness. One could even argue that bracing could make the scoliosis worse by deconditioning the spine. It's almost like wearing a lumbar support 23 hours a day...how would that affect your postural muscles?? There is a study that shows that bracing and non-bracing scoliosis patients did not alter the number of patients that eventually had to go in for surgery. Having said that, I am open minded, and I do not totally discount the possible effectiveness of braces if perhaps it is combined with some other sort of therapy ie Schroth. Even then, I still have my reservations.

Becky is right. Scoliosis is in 80% of the cases, idiopathic. That means that no one knows the cause of the scoliosis. There is new research to suggest that it is due to a problem originating in the brain. But nonetheless, all these treatments and therapies are addressing the "symptoms" of the scoliosis (the curves) and not the cause. That's why it is so difficult to treat scoliosis.

Different alternative therapies will help "some" individuals, but it may not help everyone. Why?? Because every individual's scoliosis is different. Two people with the exact same Cobb angle will have different outcomes to the same, exact treatment.

However, the earlier you seek care for the scoliosis, the better the possible outcome. Why? The larger the curve, the more difficult it is to correct it with alternative therapies.

What should be the protocol if you have scoliosis?

First try something non-invasive. I personally would not consider brace, because an extensive review of literature shows that it is ineffective, but that's my personal opinion. Also, the psychological effects of braces on a child is sometimes worse than the scoliosis itself.

Surgery should only be the last resort.

Everyone should be well-informed no matter what they pursue. The specialist, whoever he/she may be, should take the time to inform you and educate you every step of the way. All your questions should be answered. It is your right as a patient.

Keep up the good fight!