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Sarah North
21st July 2009, 01:38 PM
I am new to this discussion list and it looks very helpful. My 12 year old daughter has scoliosis. I have been reading and learning about exercise treatments such as Schroth, and have been in touch with Joanna Slup and 'Scoliosis SOS'. I have seen fleeting references to them in your discussions. Do many members have experiences of exercise treatments, or of the practitioners mentioned? (or others?) What are your views of them?
Many thanks

mark
21st July 2009, 02:59 PM
Hi Sarah welcome to SSO

If you have a look in the non surgical forum there is an abundance of threads discussing Schroth, Alexander Technique and whole other plethora of like treatments.

If you go down the conservative route i would always advice you remain under a consultant if only to monitor the degree of curvature.

They are pro's and cons to both

Mark

cherrybird
21st July 2009, 03:12 PM
I agree completely with Mark, it's so important for kids to be monitored espically through key growth stages where curves can progress within the blink of an eye (figuratively speaking)
Claire

BeckyH
21st July 2009, 03:51 PM
hi sarah,

sorry for the circumstances which have brought you here, but welcome to SSO.

there have been several debates on non-surgical therapies (bracing and exercise therapies in particular), the most recent of which can be found here: http://www.scoliosis-support.org/showthread.php?t=7770

many of us are biased based on our own personal experiences and we can be quite passionate about it! scoliosis treatments are still developing and one of the primary concerns about particularly exercise therapies is the lack of long term proof that they not only work but that the results are sustained for the rest of the patient's life. my opinion is that this is a huge commitment to undertake and that this may affect the patient's life in a negative way. although surgery has a permanence to it, this is good and bad, however in my opinion the good outweighs the bad as most of us don't miss the flexibility we lose and live perfectly happily about it.

decisions should of course be made on an individual basis, but the thing i will stress is that if you choose to undertake an exercise therapy it is vitally important that your daughter remains under the observation of an experienced scoliosis consultant in case they need to step in.

Pancake
22nd July 2009, 01:24 AM
I associate myself with the remarks of Mark, Claire and Becky which are well taken.

And with respect to Schroth at least, they have been at that for over 90 years. And the world is still waiting for proof of permanent curve reduction or even halting of progression in growing kids.

I don't feel I have to monitor the PT (and bracing) scene in real time for proof of efficacy of these conservative treatments.

I just check who wins the Nobel in physiology or medicine as I think the person who invents a conservative treatment that allows folks to avoid (versus just delay) surgery will not only deserve the Nobel but win it.

Just my opinion.

Amazed Jean
22nd July 2009, 05:32 AM
Hello and welcome. Your question is best answered with an "it depends." Every one of us has fairly strong leanings. That's what I find so stimulating at SSO. There are no two cases of scoliosis that are identical and so there are options for everyone that differ here and there. None of us would march you off to an exercise plan, a PT, a Chiro or a surgeon in lock step. Many of us have leanings but that's what makes us so supportive. We can answer many questions from experiences or research. I don't think anyone here is a surgeon or other type of specialist. Hopefully they have their own practice and/or site to keep them busy. We do however all like to feel like you can come here and ask questions, share hopes, whine if you want, tell jokes,cry, laugh, get together or whatever it takes to be supported. Lest we forget we don't want you to ask one question and go away - we welcome your input all through your scoliosis.

Beanstalk
22nd July 2009, 07:36 AM
Hi Sarah

Becky has given you a link to a thread I started. My 13 year old daughter has just completed four week intensive Schroth. It definitely requires application by the young person and strong support from family and friends. It's possible that the reduction in my daughter's curve will be permanent, we shan't know for sure until she reaches 25. By that time she will be skeletally mature and independent. She will continue to see Joanna once a month for the foreseeable future - it seems sesnsible and they have a strong connection now. She'll also meet up with others who are doing Schroth.

Before we started on this route everyone told us it was impossible to achieve a reduction without surgery. I got a call from a friend of a friend whose daughter had ended up having surgery, explaining that it was the only option, they had tried everything. Since the improvement I have discovered that they had never heard of Schroth and were unfamiliar with the AIS (adolescent idiopathic scoliosis) acronym. My understanding of this is that they were underinformed, that the information offered by experts was effectively incomplete. My requests for information from the NHS were repeatedly rejected. At one point I was told by a customer support person that they had no more time for me because 'we're looking after sick people here'. I should thank that person. As a result I made a formal complaint and got a second appointment within two months and discovered my daughter's condition had deteriorated and there was no time to waste. I considered we had a six month window to see change: an operation was the only outcome on offer. I was repeatedly told I was 'overinforming myself' and it was made clear that my pursuing more information for myself and future patients was considered to be a barrier to my daughter getting proper treatment for her condition.

There is no way I can be sure that physical therapy will work for everyone. What I feel is true is that there is no way of knowing until such therapies are part of what's on offer to all. At the moment such an approach costs money, not a huge amount, but this is another barrier to many. The cost is about the same as having braces. My daughter understood all the options, and was determined to avoid having an op. I started to weaken, other than in my support for her.

I intend to research further and find out more, in order to get a broader offer available on the NHS.

best wishes to you and your daughter

tonibunny
22nd July 2009, 11:07 AM
Interestingly, Dr Hans Weiss told me himself that Schroth exercises alone cannot halt curves during the adolescent growth spurts, and that strict bracing regimes are needed too. Beanstalk, does Joanna Slup recommend the use of braces? I know Stana's daughter has a Cheneau, which is one of the braces recommended by Dr Weiss.

Pancake
22nd July 2009, 12:12 PM
Interestingly, Dr Hans Weiss told me himself that Schroth exercises alone cannot halt curves during the adolescent growth spurts, and that strict bracing regimes are needed too.

That is a startling admission that I haven't heard mentioned before. Have you contributed that to NSF?

Does he also admit it doesn't reduce curves permanently in either kids or adults?

tonibunny
22nd July 2009, 12:35 PM
I thought I had mentioned it, but I'll certainly mention it again Sharon. I was in touch with Dr Weiss a couple of years ago when a lot of people here started asked about Scoliosis SOS and Schroth. There's a lot of confusion because Scoliosis SOS started out as a Schroth clinic and gained a lot of publicity as such, but Dr Weiss distanced himself from them and they now teach their own brand of physio called Scoliogold.

Strict bracing is a very important part of conservative scoliosis treatment in Germany, according to a German member of ours (also called Toni!). They insist on a huge amount of in-brace correction, which means that the braces are harder to tolerate wearing but are probably more efficient.

Pancake
22nd July 2009, 12:42 PM
I see.

I suggest it is far from clear with many folks that PT alone can work. I'm not saying Weiss is hiding that admission. I'm saying I'm not sure it is widely known.

Also, someone in Germany said that even there Schroth is a very fringe treatment. Do you know if that is true? That would be interesting to know.

They also said there are plenty of middle aged and elderly folks who clearly have scoliosis. Schroth has been around over 90 years. At this point, the fact that it has been around that long doesn't appear to be a point in their favor given the meager evidence case they have amassed to date.

tonibunny
22nd July 2009, 12:51 PM
The impression I got was that although physio is used a lot more in Germany than here in the UK, Schroth is definitely still seen as a fringe treatment, yes. It is far from being "the standard treatment in Europe" as I have heard it described in the American forum.

Beanstalk
22nd July 2009, 01:49 PM
Interestingly, Dr Hans Weiss told me himself that Schroth exercises alone cannot halt curves during the adolescent growth spurts, and that strict bracing regimes are needed too. Beanstalk, does Joanna Slup recommend the use of braces? I know Stana's daughter has a Cheneau, which is one of the braces recommended by Dr Weiss.
Ok people tell me who Dr Hans Weiss is please.

What I do know is that my daughter's curve and rotation has diminished, not halted. focused exercising will continue into her mid 20s and beyond.

Joanna Slup has not recommended a brace. Noone has recommended a brace for my kid. She is adolescent btw.

tonibunny
22nd July 2009, 02:06 PM
Dr Weiss is the son of Christa Lehnhert Schroth, and grandson of Katherina Schroth. He runs the two German Schroth clinics (or did, I think he's handed over the management of the clinics to someone else now).

Please don't panic, Joanna Slup is Schroth certified and there are pics of her on her website with Christa Lehnhert Schroth! It sounds like your daughter is doing fine and she is being monitored by her consultant so there's no need to worry :)

ETA: looking back at the notes I made at the time, Dr Weiss said that strict bracing was necessary with Schroth exercises in SOME cases, not all. I'm so sorry to have worried you Beanstalk.

mark
22nd July 2009, 02:32 PM
Quote And with respect to Schroth at least, they have been at that for over 90 years. And the world is still waiting for proof of permanent curve reduction or even halting of progression in growing kids. Quote

Could not agree more, the other thing to realise which i don't believe has been mentioned is scoliosis sos (scoligold) and other new treatments have only been around a couple of years. In my humble opinion a lot of facts and figures banded around are done so with very little scientific proof of the long term benefits.

I have read posts from people suggesting that surgeons play god with our bodies. I would suggest that these practitioners are also playing god only their god has no meaningful scientific evidence to base those results on (i.e. longterm studies, except true Schroth). Now i am a devout atheist and don't have one religeous bone in my body but if i was a 'believer' I know which one i would follow into the promised land.


And just so everyone knows which camp my foot is firmly placed in i don't think many working families have 4 thousand pounds to burn in the current financial climate.

Sarah North
22nd July 2009, 11:08 PM
Many thanks for your thoughts and comments. I learned a bit about the Schroth method from web searches and found Joanna Slup's name as a 'registered' UK specialist; and came across a (BBC web) Woman's Hour interview with Erika Maude (Scoliosis SOS). It is very helpful to read what you say about them. I have done some more reading about the techniques, and seen some reviews of their efficacy. There is quite a bit of academic literature on all this but it is under-researched. In a nutshell there is some evidence that conservative, exercise based treatments work for certain things. I think probably the science arrives at a similar picture to the one you are all conveying - there is no single right course of action, and so much depends on the specifics of individuals' needs and circumstances. Anyway thanks again.
Sarah.

Pancake
23rd July 2009, 06:17 PM
Hmmm, shall I split the last few posts off so we can have a discussion on the pros and cons of surgery vs nonsurgical treatments? Sealy and Pancake seem to be at each end of the spectrum and many others of us have views on this. So long as we keep it respectful it could be a good debate :)

Good idea.

This thread was hijacked. :D

Beanstalk
24th July 2009, 07:05 AM
for info the cost was less than four thousand pounds, and as mentioned was similar to the price for bracing a child's teeth

thanks for the background info

mark
24th July 2009, 08:08 AM
Hi Beanstalk

Sorry i will make my post a bit clearer (i always know what i want to say but my fingers never seem to do what my brain is telling them lol) when i quoted 4 thousand pounds that was the price that scoliosis sos charged. If it has come down in price then great, (sorry i can't rmember whether it is scoliosis sos or the true Schroth your daughter is doing). Fortunately for me i never had to have my teeth braced so i wouldn't have the first clue what the comparative price is :D.

Mark

tonibunny
24th July 2009, 10:57 AM
Hi Mark,

Beanstalk is learning Schroth under Joanna Slup at ScoliosisInLondon, I have no idea how much she charges but she is a certified Schroth practitioner and possibly the most experienced Schroth physio in the UK at the moment. Beanstalk, would you be happy to post how much the treatment costs?

mark
24th July 2009, 11:02 AM
Thanks Toni, ahh i know which practitioner you are talking about now, like you i have only heard good things of the work she does. If we had more practitioners like her perhaps the conservative treatment options would not be seen as an exercise in making money rather than looking after the patients well being.

It would be great if hers and other Schroth practitioners (note i'm talking pure Schroth here) treatments would be available on the nhs so those less financially able would have access to this kind of treatment and proper scientific studies could be done to assess the effectiveness of such interventions

Beanstalk
27th July 2009, 12:35 PM
Hi Mark,

Beanstalk is learning Schroth under Joanna Slup at ScoliosisInLondon, I have no idea how much she charges but she is a certified Schroth practitioner and possibly the most experienced Schroth physio in the UK at the moment. Beanstalk, would you be happy to post how much the treatment costs?

The cost of four week intensive was £2,200, 100 hours. Joanna's commitment is incredible and I can't describe how grateful I feel. She was incredibly adaptable, so my daughter was able to attend some lessons at school. At no point did she make claims of a miracle cure, it's education about the condition and about what the exercise is doing, self-awarenss and sheer hard work on an ongoing basis.

If this treatment was available on the NHS it would cost the NHS less than this.

mark
27th July 2009, 07:55 PM
The cost of four week intensive was £2,200, 100 hours. Joanna's commitment is incredible and I can't describe how grateful I feel. She was incredibly adaptable, so my daughter was able to attend some lessons at school. At no point did she make claims of a miracle cure, it's education about the condition and about what the exercise is doing, self-awarenss and sheer hard work on an ongoing basis.

If this treatment was available on the NHS it would cost the NHS less than this.

That seems such a drop in the ocean for this massive beamoth that we call the NHS, i think its time that we started getting a leftfield in our treatment plans. I think it should be offered to those who the medical guru's deem it an option, if surgery costs roughly 30 grand there are big savings to be made

Beanstalk, i can see the love you have for your daughter, it is truly inspirational and beautiful to read the passion you have for your daughter

mark

mark

BeckyH
28th July 2009, 12:11 AM
That seems such a drop in the ocean for this massive beamoth that we call the NHS, i think its time that we started getting a leftfield in our treatment plans. I think it should be offered to those who the medical guru's deem it an option, if surgery costs roughly 30 grand there are big savings to be made

Beanstalk, i can see the love you have for your daughter, it is truly inspirational and beautiful to read the passion you have for your daughter

mark

mark

for what it's worth, i think £30K is a bit wide of the mark for a standard fusion. all in (this is including HDU time, theatre time, equipment, OT, physio, anaesthetist, 24 hour nursing, drugs, x-rays etc) my week in hospital and surgery cost £12,000 (well, it cost BUPA that much), so like beanstalk said, it's probably cheaper on the NHS. bearing in mind that was a straightforward fusion on an 18 year old who spent minimal time in HDU and hospital in general.

i don't know what the costs in the US are, or in fact for any other surgeon in the UK at different hospitals, it'd be interesting to know.

and just as a disclaimer, i'm not trying to pick a fight or insinuate that cost is the main factor in deciding what's the best route of medical care, just sharing my experience :)

tonibunny
28th July 2009, 01:05 AM
I spoke to Debbie Goodall a while ago, she's another registered Schroth therapist - she works within the NHS as a physio and is hoping to help introduce Schroth exercises to the NHS. She told me that one of the main problems she faces is that physios in the UK are only supposed to use evidence-based techniques and there aren't enough independent clinical studies yet for Schroth to be taken seriously, hence it's not available yet, and physios who want to get Schroth certification have to fund their study themselves.

Debbie has a small number of private patients who she teaches the technique to outside of her NHS work. Apart from Debbie and Joanna Slup, I only know of two other registered Schroth therapists in the UK: Isabelle Grote, who works at the Foxburgh Clinic in Norfolk and offers Schroth amongst a host of other therapies and treatments, and Kris Godzinksi, who is at Scoliosis SOS and therefore teaches Scoliogold instead. Joanna Slup is the only full-time Schroth therapist in the UK as far as I know.

mark
28th July 2009, 02:05 PM
for what it's worth, i think £30K is a bit wide of the mark for a standard fusion. all in (this is including HDU time, theatre time, equipment, OT, physio, anaesthetist, 24 hour nursing, drugs, x-rays etc) my week in hospital and surgery cost £12,000 (well, it cost BUPA that much), so like beanstalk said, it's probably cheaper on the NHS. bearing in mind that was a straightforward fusion on an 18 year old who spent minimal time in HDU and hospital in general.

i don't know what the costs in the US are, or in fact for any other surgeon in the UK at different hospitals, it'd be interesting to know.

and just as a disclaimer, i'm not trying to pick a fight or insinuate that cost is the main factor in deciding what's the best route of medical care, just sharing my experience :)

Thanks for that Becky i base the figure i quoted on the conversation i had with my surgeon, i am going to have 17 grands worth of scaffolding, 18 hours of 2 eminent surgeons (my surgeon always likes to work with a colleague) and their teams time and the rest would be in 10 days (yes he said i would be in HDU for a number of days then it would at least a week on top of that) of hospital care he told me i would be having.

Beanstalk
28th July 2009, 03:58 PM
I have been told a single fusion costs around £10k for a young person. Healing is quicker of course.

I haven't heard of what cost might be involved in maintaining - anyone know? I mean such as rods breaking etc

BeckyH
28th July 2009, 04:47 PM
I have been told a single fusion costs around £10k for a young person. Healing is quicker of course.

I haven't heard of what cost might be involved in maintaining - anyone know? I mean such as rods breaking etc

hi beanstalk,

i don't have any statistics on rod breakage but these days it's incredibly rare. this is mainly due to the instrumentation being different now compared to when harringtons were used: harringtons involved a pin at the top of the rod and one at the bottom, meaning that the rod was "free" between the verts involved (depending on length of fusion, that obviously can be a lot of spine!). instrumentation nowadays is such that patients have a pin/screw/hook in each vertebrae of the fusion (i have five myself) which means the instrumentation is far more stable.

the reason that harringtons broke (accidents aside, as impact can obviously cause breakage) is that bone is stronger than metal (the metalwork in all fusions becomes redundant once the fusion is solid and could technically be removed, but most patients don't bother as the additional physical trauma of the surgery is not worthwhile as we can live happily with it), so with harringtons, the spine can work against the metalwork and pull on the rod, causing sagittal imbalance (also referred to as flatback) and potentially rod damage.

however, as i said, breakage these days is rare. materials used are those such as titanium, which don't corrode of their own accord. without being too dramatic, i think fusions and instrumentation can withstand a lot and i think it'd take a huge amount to damage most fusions... such as an accident involving major injuries.

i've said to some people before that people often mistake cosmetic surgeries (such as breast augmentation) as a one-off event, when really they do need to be changed every 20 years or so. this (hopefully!) shouldn't be the case with spinal fusions. obviously none of us would do this with the intention of having more surgery, and it is a bit of a leap of faith, but fingers crossed those having standard fusions shouldn't be facing further surgery.

sorry that got a bit long! scoli surgery doesn't make patients immune from other back problems - we are at risk of damaged discs lower down just as other people are, it's an age-related deterioration in which case patients may be offered a disc replacement/repair or an extension of their fusion by one or two levels. hope that helps.

for what it's worth, i was surprised that my surgery cost so little, i thought it'd be a lot more than that! it may also be worth noting that i had my surgery 4 years and two weeks ago :D so things may have become a bit more expensive since then.

MOB
28th July 2009, 05:09 PM
my op cost IR£800 28 years ago

mark
28th July 2009, 05:35 PM
:glee: I'm worth something like £20,000 - makes me want to melt me down!! The whole op was worth £35,000, so glad we have the NHS over here.

Found this post which was by Gloom Cookie early last year which just demonstrates how much surgery can and does cost