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Sealy
22nd July 2009, 04:11 PM
*** Hello chaps, I've split the debate that was starting up off into this thread here as it was going off-topic from Sarah North's original question in the thread she started. The surgery vs non-surgical treatment debate is an interesting one and there are good arguments for both modes of treatment. Let's have a good hearty debate, but please keep it respectful or I might have to get all Jane-Austen on your asses like I did with Simon :joke: Cheers, Toni xx ***


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.

I'm not aware of any orthopaedic surgeon winning the Nobel prize for surgery. :D But while on the topic of non-operative treatments I nominate Dr. Min Mehta for the prize

Pancake
22nd July 2009, 08:53 PM
I'm not aware of any orthopaedic surgeon winning the Nobel prize for surgery. :D But while on the topic of non-operative treatments I nominate Dr. Min Mehta for the prize

Did the guy who invented setting arm bones deserve a Nobel?

Fusion isn't remarkable like a conservative treatment avoiding surgery would be remarkable just given the history of each.

Pancake
23rd July 2009, 03:44 AM
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.


The problem with PT and bracing is that it is just so hard to study in a controlled design. Compliance is a huge issue especially with bracing which is far from a benign treatment. Also, there are remarkably high rates of spontaneous correction. For example, some 90% of JUVENILE IS (I mistakenly wrote infantile at first) cases never require surgery as I understand. Also, a fair number of older kids have spontaneous improvements and even total correction just doing nothing. If a kid happens to be in a brace, the correction is automatically attributed to the brace but that may not be the case at all.

The bracing literature is a miasma wrapped in a train wreck. This is being recognized now in the form of the BRAIST study which got the go ahead from the ethicists to have a control group that isn't braced. That is a big red flag admission that bracing is still an open question, largely because of the lack of controlled studies.

Bracing and PT might be effective but we may never know.

Sealy
23rd July 2009, 01:12 PM
~ For new parents embarking on this journey, your statements are irresponsible and cause for concern. Veteran parents know better. Many doctors, including the SOSORT, a group of professionals and doctors dedicated to the non operative treatment of scoliosis, have come out against the Braist study and stated that its unequivocally - unethical. I’m sure the Ethics Committee would never allow a control group for infantile or juvenile scoliosis because for these children, scoliosis can become very quickly in the absence of non-operative treatments, a life threatening condition.


I don’t know what your motives are in discouraging parents or putting doubt in parents minds as to how they should proceed with their child’s care. The only alternative to non-operative treatments is surgery and I have read in other boards that you consider your one daughter, who has undergone spinal fusion, to be CURED! This kind of thinking is naďve especially coming from someone who appears to have done her research. Spinal fusion in growing children is accompanied by a myriad of complications and it's reckless for you to be so dismissive about this condition.

Pancake
23rd July 2009, 01:26 PM
My daughter's surgeon told me she is back in the general population for risk of all future back issues (because of where the fusion ended - L1). She is NOT predisposed to back issues over and above the general population.

Now in practice, at vast majority of people without scoliosis get back problems over their life, at least 85%. So it doesn't mean she is out of the woods on back problems. She just won't have a higher incidence than non-scoliotics at this point.

That's what the surgeon tells me. But I think you are suggesting lay mothers on here know better?

When an experienced orthopedic surgeon tells me my kid is back in the general population I consider her cured. What do you call it?

The problem with bracing studies is that there are no controls and we separately know there are spontaneous corrections. Bracing is NOT a benign treatment so it is important to know if it is doing anything at all or if it only helps a small percentage of folks or whatever. There is some indication that at least 70% of braced kids don't benefit either because their curve would not have progressed or that no brace could have helped them. That's a wacking high percentage if true.

Maybe medical studies are intrinsically harder to do but there is no way the folks in my field would get away with publishing the poor quality studies that I have seen in the bracing literature. No chance.

Have you looked at the bracing literature? There are several threads on NSF dissecting certain papers in great detail. I remain perplexed at how some of that stuff is publishable. The ethicists have come to a different conclusion than you because of this obvious miasma. Perhaps the problem is that the folks over at SOSORTS (and you) don't understand why the literature is a mess. Maybe you can get the reasoning from the BRAIST researchers to understand this issue.

Bracing might work. But you can't just "know" it. You have to "show" it given it is a hard treatment.

ETA: My kid was almost done growing at the time of her fusion. She had no problems due to crankshafting because of it. I suggest YOU are scaring parents (especially yourself) with incorrect facts about surgery.

Pancake
23rd July 2009, 01:45 PM
In re my daughter...

Reduced from 58* to 5* as of a few days after surgery. Almost all rotation removed.

Still at 5* at the 8th month mark. In other words, no change at all.

We are at 16 months, and she appears the same. No complaints. No complications so far. She is immensely glad to get the surgery as she would be dead by now without it I suspect. Her curve moved ~5 degress a month for at least 5 months.

So I guess we haven't seen the "myriads" of complications yet. Nor does the surgeon expect them as you apparently do for unknown reasons.

I have noticed a tendency of folks who are against surgery to seek out less than top shelf information on it. I'm not saying you are doing that. I'm saying it is a pattern at this point that folks who are against surgery for whatever reason look to groups like SOSORTS rather than SRS let's say. Weiss in particular has made some counterfactual and highly misleading statements in print.

It's important to get the facts and not constantly scare yourself with bad information.

Pancake
23rd July 2009, 01:58 PM
Spinal fusion in growing children is accompanied by a myriad of complications and it's reckless for you to be so dismissive about this condition.

I think you are referring to IIS and JIS here, not AIS (or scoliosis associated witrh a connective tissue disorder).

I don't know about IIS but if I had a JIS child, I would consider VBS over bracing at this point based on the respective evidence cases amassed to date.

More research is needed for all treatments but in my opinion, even though VBS has been around many less years compared to bracing, they have more high quality evidence of efficacy in hand.

A while ago, I saw you make a comment that you thought VBS was viewed as a temporary fix to get kids to a point where they can be fused. I started a thread on NSF about it because I thought it was wrong. Essentially, you are saying that you think all VBS kids are expected to need fusion at some point.

That is bad information. The idea of VBS is and has always been to AVOID fusion per folks who actually know about these things as opposed to you and me. Thus I find your accusation of me spreading bad information a bit ironic.

Again, I can't overemphasize the importance of getting good information.

mark
23rd July 2009, 05:38 PM
I understand what Pancake is saying, i know i am going to feel when i do eventually get my 2 titanium rods and 20 odd screws i will feel cured because this is what i have strived for throughout my life, this is why i had to go through 2 nervous break downs, this is why i had problem with alcohol and weed throughout my life, this is why i have an addictive personality, this is why i have managed to maintain a proffesional career througout all my highs and lows because i know this surgery is my cure, i don't care if someone says i'm incurable medically, i will take issue with the most eminent, but no one is going to tell me once i am straight and standing proud and tall i'm not cured, no way i'm not having that, i gone through too many near death experiences to be told i'm not cured

mark

Sealy
23rd July 2009, 05:44 PM
When an experienced orthopedic surgeon tells me my kid is back in the general population I consider her cured. What do you call it?

I would call that delusional thinking!

And how very fortunate for you that your daughter underwent spinal fusion once she was skeletally mature! Many are not so lucky. What alternatives do you propose to parents whose children who are still growing (adolescent growth spurt included) and are at risk of developing large deformities without non-operative treatments?

With respect to VBS and other emerging surgical procedures, parents should be very careful when sifting through the studies on clinical trials:


http://www.amjorthopedics.com/pdfs/037120205e.pdf


The roles of funding source, clinical trial outcome, and quality of reporting in orthopedic surgery literature

Authors: Safdar N Khan (https://www.researchgate.net/author/Safdar+N+Khan), Matthew J Mermer (https://www.researchgate.net/author/Matthew+J+Mermer), Elizabeth Myers (https://www.researchgate.net/author/Elizabeth+Myers), Harvinder S Sandhu (https://www.researchgate.net/author/Harvinder+S+Sandhu)

Journal: American journal of orthopedics (Belle Mead, N.J.) (https://www.researchgate.net/journal/1934-3418_American_journal_of_orthopedics_(Belle_Mead,_ N.J.))

Compared with nonfunded or peer-reviewed funded projects, industry-sponsored clinical trials have traditionally been associated with more positive results. This relationship has been extensively studied in the nonsurgical literature. Although a few authors have addressed specialties, little has been reported on orthopedic clinical trials and their association with funding, study outcome, and efforts to reduce bias after randomization across journals of multiple subspecialties. For the study reported here, we selected 5 major orthopedic subspecialty journals: Journal of Bone and Joint Surgery (American Volume), Spine, Journal of Arthroplasty, Journal of Orthopaedic Trauma, and American Journal of Sports Medicine. We chose a 2-year limit for investigation (2002-2004); included all original randomized clinical trials reported in these 5 journals; and examined these trials for their study design, funding source, outcome, bias potential, and conclusion reached. Support for the 100 eligible orthopedic clinical trials was stated as coming from industry (26 trials, 26%), nonprofit sources (19 trials, 19%), and mixed sources (5 trials, 5%); no support was stated in 46 trials (46%), and support was not reported in 4 trials (4%). Of the 26 trials reporting industry support, 22 (85%) were graded as indicating an outcome favorable to the new treatment. The association between industry funding and favorable outcome was strong and significant (P<.001). In almost half of the studies reported in Journal of Bone and Joint Surgery and Spine, measures taken to reduce bias were not documented.
American journal of orthopedics (Belle Mead, N.J.). 01/01/2009; 37(12):E205-12; discussion E212.
ISSN: 1934-3418

Pancake
23rd July 2009, 05:51 PM
I understand what Pancake is saying, i know i am going to feel when i do eventually get my 2 titanium rods and 20 odd screws i will feel cured because this is what i have strived for throughout my life, this is why i had to go through 2 nervous break downs, this is why i had problem with alcohol and weed throughout my life, this is why i have an addictive personality, this is why i have managed to maintain a proffesional career througout all my highs and lows because i know this surgery is my cure, i don't care if someone says i'm incurable medically, i will take issue with the most eminent, but no one is going to tell me once i am straight and standing proud and tall i'm not cured, no way i'm not having that, i gone through too many near death experiences to be told i'm not cured

mark

Wow.

If contributing your knowledge and experience here has in any way helped you overcome those issues, I'm glad you are posting.

And I specifically want to congratulate you on maintaining your career through all that. That is something.

In re feeling cured, I suspect you will not only feel that way but might even be back in the general population on all future back issues. I don't know anything about Sheuermann's (sp?) kyphosis but I've seen some radiographs including Simon's that look pretty darn great.

I would not be surprised if you were back in the population on risk for all future back issues after your surgery. And I will raise a glass to you on that day!

Last, I am ostensibly in the general population and yet have a natural fusion in my lumbar which is almost certainly due to a sports injury (bad technique riding dressage). And I am coming to understand why folks who are fused into the lumbar sometimes need extensions of their fusions... I think my two level fusion seems to be propagating to other levels based on the pain I feel at times. Luckily, I never have pain while riding, usually only at night so that's lucky.

If the 85% figure is right for "normal" people to have back issues in their lifetime, even if fused folks had a 100% chance, that is really not that more more.

Perspective always.

Pancake
23rd July 2009, 05:59 PM
I would call that delusional thinking!

What is that based on? Your years of training and experience as an orthopedic surgeon?

ETA: Take a deep breath and consider what you are saying. You are saying you know more than an experienced orthopedic surgeon. And note I did NOT say he said she was cured. I said I don't see a difference between what he told me and sayng she is cured.

If an experienced orthopedic surgeon told you your daughter, after treatment, was back in the general population on risk for ALL futute back issues, would you consider her "cured?" Yes or no and why or why not.

Here's what I think he based the statement on that my daughter is back in the general population...

Even with the older generation hardware such as the Harrington rods, the folks fused in the thoracic region had few if any problems. Most, if not all the problems were seen in the lumbar fusions. I think most/all revisions are done for flatback which is a lumbar issue as far as I know.

My daughter had a thoracic curve and was fused using instrumentation that is even better than the previous generation. It is so good that 95% of kids need no physical restrictions whatsoever to get a good fusion. They restrict all kids because they don't know ahead of time who the 5% are. Based on that, I can see why our surgeon can claim my daughter is back in the general population on risk for all future back issues.

I see some of the same issues that popped up on NSF are still occurring with you here. It's important to not only get good information but also to understand it.

Also, you have to qualify your comments. If all your comments only apply to IIS and not to AIS then you have to be clear. It is obvious some of your statements ONLY apply to IIS and do NOT apply to AIS. I don't blame you for not knowing about AIS but you need to be clear.

tonibunny
23rd July 2009, 06:07 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 :)

Pancake
23rd July 2009, 06:09 PM
http://www.amjorthopedics.com/pdfs/037120205e.pdf


The roles of funding source, clinical trial outcome, and quality of reporting in orthopedic surgery literature

Authors: Safdar N Khan (https://www.researchgate.net/author/Safdar+N+Khan), Matthew J Mermer (https://www.researchgate.net/author/Matthew+J+Mermer), Elizabeth Myers (https://www.researchgate.net/author/Elizabeth+Myers), Harvinder S Sandhu (https://www.researchgate.net/author/Harvinder+S+Sandhu)

Journal: American journal of orthopedics (Belle Mead, N.J.) (https://www.researchgate.net/journal/1934-3418_American_journal_of_orthopedics_(Belle_Mead,_ N.J.))

Compared with nonfunded or peer-reviewed funded projects, industry-sponsored clinical trials have traditionally been associated with more positive results. This relationship has been extensively studied in the nonsurgical literature. Although a few authors have addressed specialties, little has been reported on orthopedic clinical trials and their association with funding, study outcome, and efforts to reduce bias after randomization across journals of multiple subspecialties. For the study reported here, we selected 5 major orthopedic subspecialty journals: Journal of Bone and Joint Surgery (American Volume), Spine, Journal of Arthroplasty, Journal of Orthopaedic Trauma, and American Journal of Sports Medicine. We chose a 2-year limit for investigation (2002-2004); included all original randomized clinical trials reported in these 5 journals; and examined these trials for their study design, funding source, outcome, bias potential, and conclusion reached. Support for the 100 eligible orthopedic clinical trials was stated as coming from industry (26 trials, 26%), nonprofit sources (19 trials, 19%), and mixed sources (5 trials, 5%); no support was stated in 46 trials (46%), and support was not reported in 4 trials (4%). Of the 26 trials reporting industry support, 22 (85%) were graded as indicating an outcome favorable to the new treatment. The association between industry funding and favorable outcome was strong and significant (P<.001). In almost half of the studies reported in Journal of Bone and Joint Surgery and Spine, measures taken to reduce bias were not documented.
American journal of orthopedics (Belle Mead, N.J.). 01/01/2009; 37(12):E205-12; discussion E212.
ISSN: 1934-3418


A few comments...

1. This is a penetrating glimpse into the obvious and is likely one of the reasons why many surgeons dismiss the Spinecor papers. There are other reasons I can suspect as we have seen at least one case of "irrational exhuberance" of reading an in-brace radiograph by the Montreal folks documented on NSF.

2. Most published research results are false. There are good reasons for this.

tonibunny
23rd July 2009, 06:48 PM
Hi, here's where I am on this:

I'm pleased that I had surgery and for me personally I think it was the best course of treatment. I'd had serial casting as a toddler but unfortunately it didn't work to correct my curve; this was probably because they didn't start the corrective casts until I was over 2 - up until then I had basic risser casts which held but didn't try to aggressively correct the curves. I was diagnosed in 1976 and Min Mehta started serial casting kids in 1978, so I was born just a couple of years too early. Serial casting is an amazing nonsurgical treatment if you can treat an infant early enough, when its bones are still soft enough to be moulded by the casts, and it is wonderful that Sealy's daughter has been able to see such amazing results from being cast.

Although I had surgery at ten, I did have an anterior procedure as well as a posterior one, which is essential to prevent crankshafting happening in children who still have a lot of growth left to do.

I still have curves of 45 and 35 degrees following all of my surgery, so I do not consider myself to be "cured". I have suffered from problems at the base of my fusion which led to me having the fusion extended a couple of months ago. However, I don't count this as a massive problem - I am already back to being as active as I was pre-surgery :) I know that I would have suffered from prematurely degenerated discs had I not had surgery anyway, simply because of the uneven loads on them.

I believe bracing can work to hold curves and prevent them from progressing at the rate they otherwise would, because I started off with a 62 degree curve at 6 months old and strict bracing helped to keep progression to a minimum right up until the age of 10. It was a very progressive curve too; when I spent a couple of weeks out of the brace, it deteriorated by over 5 degrees! I can also compare myself to friends here who had smaller IIS/JIS curves to start off with, didn't have bracing, and ended up with massive curvatures. I do agree that bracing is much, much harder for teenagers to tolerate though, so ideally I'd like to see it only used where kids really need to grow more before they are fused. Had I had the choice as a kid I would have wanted growth rods or VEPTR instead.

If you define scoliosis simply as a lateral curvature of the spine, and surgery removes that curvature back to under 10 degrees, then it certainly could be said that surgery "cured" that scoliosis - especially if a doctor considers that the patient is unlikely to suffer further back problems any more than someone without scoliosis. BUT.....if you view idiopathic scoliosis as a condition with an underlying cause, then even if you remove the deformity, it is problematic to say that it has been "cured" because you haven't been able to identify and cure that underlying cause. Sealy's daughter's curve is one degree following the serial casting, I believe? Yet I assume she is unwilling to say her daughter is cured, because she doesn't yet know if the underlying cause is going to make the curvature return when her daughter is an adolescent.

Hmmm, I hope that makes sense. I'm firmly of the opinion that surgery is useful and is needed in a lot of cases. I also would love to see a non-surgical technique for AIS that can be proven (with independent clinical trials) to work. Also, if someone wants to try Schroth or other exercise treatments to try to avoid surgery, I wish them the best of luck and will support them in their choice - I'll just try to make sure that they get factual advice, and strongly advise them to make sure they are also monitored by a medically qualified professional.

Pancake
23rd July 2009, 07:44 PM
Tonibunny,

That is a well-reasoned position.

I can't say I disagree with any of it.

I think bracing, PT, etc. might work but it is not correct to say it has been shown to work because of the problems with the literature, both specific to bracing and PT studies and general that apply to all research studies.

WRT "curing" scoliosis, I can see there is likely a range of definitions. I hadn't considered what you wrote so I'm glad you wrote it and hope others chime in with what they consider a "cure."

It seems to me at least one defensible definition is as follows...

Anyone who goes through any treatment for a condition where the treatment eventually ends and the person is not expected to need any further treatment for the condition or any sequelae specific to that condition in their lifetime is CURED.

That is the case with at least some, if not most thoracic fusions on mature or nearly mature spines that end at or above L1 as far as I know. Moreover I think it is also the case with older, previous generation instrumentation, not just pedicle screws. Therefore it isn't "delusional thinking" to folks who know what they are talking about.

Furthermore, an adult patient on NSF with the identical fusion my daughter had was told the SAME THING by a DIFFERENT surgeon... that she is back in the general population on risk of all future back issues (presumably because her fusion also ends at L1). Given how small the NSF sandbox is, if we have two different surgeons telling an adult and an adolescent the same thing, I suggestion it is not a fringe claim.

The JIS and IIS cases are far different and much, much dicey unfortunately compared to AIS. I have virtually no knowledge of IIS and a only small bit about JIS... enough that I would try VBS over bracing if my kid qualified.

The point is the conditions, although all scoliosis, need to be managed differently and you can't blithely map IIS knowledge onto AIS.

Sealy
23rd July 2009, 08:10 PM
A few comments...

1. This is a penetrating glimpse into the obvious and is likely one of the reasons why many surgeons dismiss the Spinecor papers. There are other reasons I can suspect as we have seen at least one case of "irrational exhuberance" of reading an in-brace radiograph by the Montreal folks documented on NSF.

2. Most published research results are false. There are good reasons for this.

....My daughter had a thoracic curve and was fused using instrumentation that is even better than the previous generation.

If as you say most published research is false, isn't it premature to believe that your daughter is "cured" with the new instrumentation??! I don't think you even read the study, did you. They are not referring to non operative treatments but rather surgery. Here is the very first paragraph in the article in case you missed it: ;)

Since the early 1980s, specific attention through various studies has been given to the relationship between industry and science. These studies have evaluated both medical–industry and academic– industry research collaborations.1-5 The medical/surgical research community has identified financial conflict of interest as a pressing issue. The medical literature provides several examples in which physicians with financial ties to manufacturers were significantly less likely to criticize the safety or efficacy of a particular product or intervention.6,7 Friedberg and colleagues8 found that pharmaceutical company– sponsored studies were less likely than nonprofit sponsored studies to report unfavorable qualitative conclusions.

Conversely, industry sponsorship often carries the burden of perceived bias and lack of credibility simply because the research has direct, transparent linkages with implant/device marketing activities.9 An estimated 70% of all clinical trials performed in the United States are industry-supported.10 Over the past several years, advances in orthopedic surgery have led to closer links with multiple commercial industries. This development reflects the fact that government funding in orthopedic surgery has diminished and that commercial funding has in many cases become a necessary if not attractive option for orthopedic surgeon-scientists. The prevalence and impact of industry sponsorship within orthopedic research have only recently been evaluated.

Considering that much of this commercially supported work is used by practicing orthopedic surgeons and scientists, making an informed decision based on such studies is challenging......

....The goal of this study was to examine how funding sources relate to orthopedic surgery randomized clinical trial outcomes across 5 journals in orthopedic surgery specialties and, more specifically, whether industry-funded studies report more positive clinical trial results than do studies with other funding sources. Previous investigators have examined the spectrum of research in a single subspecialty journal (inclusive of basic science, case series, biomechanics studies)11 or across medical and surgical journals of several specialties (including medicine, general surgery, plastic surgery, neurosurgery and orthopedic surgery). 18 Our results indicate that there is a significant positive association between reported clinical trial outcome and funding source in the orthopedic surgery literature. There also appears to be a trend toward journal-dependent association between study outcome and funding source. Of the 26 industry-supported trials, 22 (85%) showed outcomes favorable to the new treatment (P<.001). These results are consistent with previous results in other fields of medical research, as noted earlier.

Pancake
23rd July 2009, 08:23 PM
Yes I read it but it applies equally to brace inventors and that explains why the group in Hong Kong could not match the glowing reports from the Spinecor manufacturers.

WRT surgical instrumentation, either folks with longstanding thoracic fusions that end at or above L1 have further problems or they don't. Apparently they don't. (Not to be confused with lumbar fusions and flatback syndrome) When you layer on superior instrumentation that decreases the pseudoarthrosis rate to near zero if not zero, then you are in a position to make some educated claims about the future of these T fusions.

At least that's the only way I can figure surgeons can make the claims that they do about these T fusions that end at or above L1.

mark
23rd July 2009, 08:30 PM
Sorry to harp back to the human angle again but to be honest i don't give a monkeys doo daa about any or all so called scientific studies, should it be for or against surgery, i'm a humanist, i feel for the person, the individual who always seems to get caught up in all this debate. I could not care less whether someone is cured (in very big invertide commas) through surgery, manipulation, conservative even bloody aliens, all i want to see is people, folks, humans, man, woman, child, boy, girl be at peace with there bodies, be at peace with who they are, don't go through the psycho torment us adults went through, live there lives and be free to be themselves

I'm sure if we can put a man/women/dog on the moon we can help the next generation not be tormented by the crud and crap we had to endure.

Feck, i'm sorry i have completly forget where this post was going. I thin what i want to say is we have to deal with so much crap with the condition we have in our daily lives, lets be at peace and be at one here, in this sanctuary that we call SSO.

I think i've waffled for far too long

Stay strong people

I wish i could

Mark

Lucy7
23rd July 2009, 09:05 PM
I agree that in many cases, surgery is the only viable option. Coming from a family of physicians, I suppose I will always be slightly biased to the surgical approach. However, unlike many members of my family, I am completelely non scientific and struggle to plough through some of the research material that is often quoted on the scoliosis forums. Give me a business report any day but my eyes glaze over with some of the surgical vs non surgical data. (This could be why I didn’t last very long working as a researcher for the CNN Health Unit many moons ago – fuzzy on facts!….). What I do find very useful is hearing people’s stories regarding their (or their child’s) treatment thus far. What helped, what didn’t? Any regrets?
Recently I have been looking into Schroth and am pretty sure I’m going to try it. I have been communicating all week with many people that have tried the two clinics I have considered and, so far, most people have found their Schroth experiences very helpful in reducing pain. Only 5 people out of the 17 that responded to me, feel that their curves have remained steady. To be honest that doesn’t surprise me. I didn’t expect to hear that 75% of the people I asked found their curves had stopped dead in their tracks (!) But I was very happy to hear that so many are experiencing much better quality of lives. Pain management is very important to me so I will try Schroth with more than a dash of hope.
The thing that upset me is that several people told me that they really wanted to share their positive experiences of Schroth but felt that their comments would be shot down or ridiculed by “pro surgery” members of the NSF forum and even this site. I think this is highly regrettable because we could all benefit from their input. I personally find SSO a heck of a lot friendlier than NSF which can be like a shark tank at times. There are people out there that just don’t want to hear about any non surgical approaches. Yes, I know there are some treatments that are about as crazy as placing hungry leeches on your back but, people,lets all have a little more respect for each other.

And if anyone who emailed or spoke to me about their experiences with Schroth this week reads this post, please join in our now more friendly debate. We want to hear from you. xx

Pancake
23rd July 2009, 11:28 PM
I have been reading NSF for about a year and a half and haven't seen anyone who is "pro surgery."

Nobody wants surgery for themsleves or their kids.

But I have seen that charge leveled at folks on NSF. Rather than being pro-surgery, they are simply pro-evidence.

It is unfortunate that the field of conservative treatments is festooned with so many claims with little to no evidence. It is hard to find the rare legitimate claims in the huge haystack of nonsense.

There are small, infrequent points of light... PT can help with pain, honest chiros exist, Spinecor appears to help with pain in adults, etc..

The world is still waiting on evidence any conservative treatment permanently halts progression or permanently decreases curves. It might do those things but some modalities like Schroth have been around for over 90 years and still have no proof.

Good luck.

Sarah North
24th July 2009, 12:51 AM
One review I have read is by Negrini and colleagues (2008)in Disability and Rehabilitation. 30, 10. Is anyone familiar with this research?

Beanstalk
24th July 2009, 06:57 AM
I have been glad to have surgery as a back up position for my daughter, who, no doubt influenced by me, has opted vehemently for the non-surgical route, so far with some success. She has AIS.

I spent yesterday morning with her doing the final session of her intensive Schroth physio. I was reminded of the dedication of the people who work in this way, both practitioners and patients. It was a picture of cooperation and education. Noone was looking for a miracle.

Apart from the anxiety associated with having a child whose skeleton seemed to be making her vulnerable to all sorts of problems, the greatest distress I have experienced through this condition has been the lack of information and discussion 'allowed'. This seems likely to be a barrier to useful discussion on this forum too.

The idea that there is only one route to treating this condition or that it a one-off action is a once and for all solution seems to me absurd and potentially a cause of likely problems. We are all responsible for our own physical wellbeing, the medical profession are there for support. If I have heart surgery and then don't address underlying problems that are likely to contribute to heart problems it undermines the benefit of the surgery, in addition surgery carries risk and recovery from surgery requires understanding of healing, and I would need to be aware of this to make it a useful treatment.

I feel that the absolute conviction that surgery is the only route for all undermines the patient in many cases. It seems to remove the patient's responsibility for their own wellbeing. My experience has been that not automatically agreeing to surgery has set up an almost adversarial relationship both with the trained experts and those who have had surgery. This is a shame and I reiterate I believe it undermines the effectiveness of both routes of treatment.

So far my daughter's progress is nothing short of a miracle, according to expert conventional medical opinion. I don't believe in miracles. I am thrilled that she seems to be en route to avoiding surgery, and I am completely aware that she has a lifetime of responsibilty for ongoing maintenance. However so do we all, she just has a special focus.

This could be a very interesting discussion thread, there is a lot to discuss.

mark
24th July 2009, 08:30 AM
I have been glad to have surgery as a back up position for my daughter, who, no doubt influenced by me, has opted vehemently for the non-surgical route, so far with some success. She has AIS.

I spent yesterday morning with her doing the final session of her intensive Schroth physio. I was reminded of the dedication of the people who work in this way, both practitioners and patients. It was a picture of cooperation and education. Noone was looking for a miracle.

Apart from the anxiety associated with having a child whose skeleton seemed to be making her vulnerable to all sorts of problems, the greatest distress I have experienced through this condition has been the lack of information and discussion 'allowed'. This seems likely to be a barrier to useful discussion on this forum too.

The idea that there is only one route to treating this condition or that it a one-off action is a once and for all solution seems to me absurd and potentially a cause of likely problems. We are all responsible for our own physical wellbeing, the medical profession are there for support. If I have heart surgery and then don't address underlying problems that are likely to contribute to heart problems it undermines the benefit of the surgery, in addition surgery carries risk and recovery from surgery requires understanding of healing, and I would need to be aware of this to make it a useful treatment.

I feel that the absolute conviction that surgery is the only route for all undermines the patient in many cases. It seems to remove the patient's responsibility for their own wellbeing. My experience has been that not automatically agreeing to surgery has set up an almost adversarial relationship both with the trained experts and those who have had surgery. This is a shame and I reiterate I believe it undermines the effectiveness of both routes of treatment.

So far my daughter's progress is nothing short of a miracle, according to expert conventional medical opinion. I don't believe in miracles. I am thrilled that she seems to be en route to avoiding surgery, and I am completely aware that she has a lifetime of responsibilty for ongoing maintenance. However so do we all, she just has a special focus.

This could be a very interesting discussion thread, there is a lot to discuss.

The thing about this forum is no one is an expert and everyone has an opinion. Most people who come to this site have curves that were so great that surgical intervention was the only possible outcome, others like myself were left on the scrap heap by this wonderful thing we call the nhs years ago and are living proof that non surgical intervention was both morally and medically wrong, others go the conservative route i can not recall anyone having a go at anyones decision on a conservertive route. However we have questioned those who come advertising there services and to be honest i have never read a straight answer to any question posed to them (politicians springs to mind).

People get very defensive when someone comes and questions them for having had to go down the surgical route. 8 hours in surgery and 6 months to a year reabilitation is nothing anyone takes lightly and to be honest in the 20 years i have spent only one surgeon has said he would perform the operation (take a look at my back its not an unstubstansial curve its 100 degrees) so from my personal experience operations appear to be the last resort with surgeons being especially loathe to undertake procedures on adults.

Freedom to debate is fantastic and the internet is a wonderful resource to debate. This site was set up as a support forum where like minded people can come for some sort of sanctuary. It has grown in the 5 or so years from a place where a very few came and everyone knew one another and it was a place where we could come to laugh and cry generally talk about anything we wanted to. It has grown into a valuable resource tool for people to come and find out about the various treatment options whether they be surgical or non surgical. But as a site it is not pro surgical intervention or negative conservative treatments. Its the members who are the most valuable resource we have and it is through there experiences that we can learn from. So if a member posts that they feel they have been cheated from paying for a conservative treatment that is there opinion. If a member says they are so much pain that they wish they never had gone down the surgical route that is there opinion and like wise for the positives.

I am so pleased for you and your daughter that she has been able to correct her curve through non surgical means it really heartens me to read such stories and i bet it has not been easy for either you or your daughter. I admire her guts and courage in saying no i don't want surgery i'm going to do the exercises it is really heartening to read such posts. I really do hope that she can maintain the correction and does not need to have surgery at any time through out her life and she should be an inspiration to others seeking a non surgical treatment.

take care

Mark

tonibunny
24th July 2009, 10:41 AM
Apart from the anxiety associated with having a child whose skeleton seemed to be making her vulnerable to all sorts of problems, the greatest distress I have experienced through this condition has been the lack of information and discussion 'allowed'. This seems likely to be a barrier to useful discussion on this forum too.




We absolutely do not want to hinder discussions on non-surgical treatments. It's always been a subject where opinions are strongly divided, but hopefully we will be able to keep things peaceful and respectful even where people strongly disagree.

A lot of people are not against the idea of nonsurgical treatments, but are very much against the idea of people being exploited financially and having their hopes raised falsely. We have in the past had problems with people from nonsurgical clinics posting to advertise their treatments as miracle cures, or even pretending to be patients themselves in order to promote their treatment or scare people about surgery. Obviously this makes the whole thing even more emotive, and this small handful of unethical nonsurgical practitioners are also giving the dedicated, ethical ones a bad name.

Usually our members will ask hard questions about nonsurgical treatments simply because they don't want to see other people get ripped off and have their scoliosis worsen. I think this is fair, again so long as it is done respectfully.

Also, I think it's good to remember that most of us are patients ourselves and as such, some of us might be going through difficult times which can lead to us feeling angry and frustrated and we might post things which seem argumentative or disrespectful. The mods are always keeping an eye out for such posts and will deal with them and talk to the person involved, but if someone does post like this, please try to be patient. SSO is a support forum, after all :)

Feedback from real, actual, trusted SSO members about nonsurgical treatments is incredibly valuable. What works for one person might not work for another (just as with surgery) but in the absence of independent clinical trials, they are the most useful information we have about nonsurgical treatments. I think Beanstalk's daughter's experiences with Schroth and Dingo's reports about his son's experiments with torso rotations are very, very encouraging. Obviously time will tell, but both are going into this with their eyes open, not expecting a miracle cure and ensuring that their children are continuing to be monitored by medically qualified scoliosis doctors.

mark
24th July 2009, 11:08 AM
Thanks for that post Toni

You have said everything i wanted to say but could only post ham fisted and unelequantly.

You have an immense appreciation and grasp of the English language that i can only dream of :D. Maybe its because i'm from wilds of the uneducated 'up north' (having dyslexia doesn't help either)

thanks once again

Mark

BeckyH
24th July 2009, 11:56 AM
i've hated having scoliosis from day one (that must sound obvious, i can't imagine anyone enjoys it) and it's always upset me that everything that's happened has affected those around me too: whether it's something simple like my parents taking time off work to take me for an x-ray to me being in hospital for a week and them having to put their lives on hold to support me.

i'll also hold my hands up and admit that i'm like lucy: my eyes completely glaze over when people post chunks of research and i skip it altogether, which i know makes me lazy and uninformed, but there is one piece of research on this planet that i would willingly read, even if it were a million pages long - a paper defining the cause of all the different types of scoliosis.

and to me, that's the most important thing. medicine all seems very short term: for example, there's a swine flu pandemic, so let's make a vaccine NOW is a current thing. non-surgical treatments and their development are progressive, which of course we want. the changing of surgical techniques is all progressive too (if i'd been offered the same fusion style as one of my school teachers had in the 60s, i'd have run screaming from the hospital) and that is just as necessary, because i sincerely doubt (sadly) that surgery will not be needed for some patients.

but i would love to see the cause determined. i think it's very important, because then treatments altogether can be more effective. and proven, permanent efficacy is what we want, i don't think that's an impossible goal.

Sealy
24th July 2009, 12:02 PM
...Also, there are remarkably high rates of spontaneous correction. For example, some 90% of JUVENILE IS (I mistakenly wrote infantile at first) cases never require surgery as I understand. Also, a fair number of older kids have spontaneous improvements and even total correction just doing nothing.

I just noticed Pancake made some changes to her post. What a bunch of B.S.!!!! She is trying to disseminate false information. I'm especially concerned for new parents embarking on this journey and believing this crap and their children not getting timely appropriate treatment.

Pancake
24th July 2009, 12:14 PM
I just noticed Pancake made some changes to her post. What a bunch of B.S.!!!! She is trying to disseminate false information. I'm especially concerned for new parents embarking on this journey and believing this crap and their children not getting timely appropriate treatment.

????

I edited typos mostly.

I stand by what I wrote.

What nefarious purpose did you think was behind my editing???

Pancake
24th July 2009, 12:15 PM
She is trying to disseminate false information.

No YOU disseminated FALSE information about VBS and should be ashamed of yourself for not researching it before misleading people. >:|

Pancake
24th July 2009, 12:20 PM
@Sealy

I question the following:

1. that you know there are real differences between IIS, JIS and AIS (and connective tissue scolioses) in terms of treatments.

2. that you know there is a difference between T fusions and L fusions long term.

Sealy
24th July 2009, 12:27 PM
No YOU disseminated FALSE information about VBS and should be ashamed of yourself for not researching it before misleading people. >:|

What statements did I ever make about VBS that isn't already in the literature?????! You are the one that is making false statements and I suggest that the moderators wipe those statements from thread because innocent children may suffer.

tonibunny
24th July 2009, 12:59 PM
I did ask that you keep it respectful please chaps :)

Sealy and Pancake, perhaps you could post links or info to show how you have come to form your opinions? Then we can all have a discussion. That would be miles more helpful than accusing each other of trying to spread false information.

Sorry, don't want to sound patronising, but DO want to keep it peaceful here! :D

Sealy
24th July 2009, 01:26 PM
I’m at a loss as to why Pancake would fabricate the following statistics:
Also, there are remarkably high rates of spontaneous correction. For example, some 90% of JUVENILE IS (I mistakenly wrote infantile at first) cases never require surgery as I understand. Also, a fair number of older kids have spontaneous improvements and even total correction just doing nothing.
With respect to adolescent idiopathic scoliosis, here is a research chart developed by the Scoliosis Research Society. Normally children with curves under 20 degrees are not treated because the risk of progression is 25% in the 10-12 age bracket:


http://www.scoliosis-australia.org/images/doc_table.gif



Hopefully I'm not boring everyone with studies, but here are a few relevant abstracts with regards to infantile and juvenile scoliosis (not to be confused with adolescent idiopathic scoliosis ;)):

1: J Pediatr Orthop. (http://javascript<b></b>:AL_get(this, 'jour', 'J Pediatr Orthop.');) 2002 May-Jun;22(3):279-84.http://www.ncbi.nlm.nih.gov/corehtml/query/egifs/http:--www.lwwonline.com-pt-pt-core-template-journal-lwwgateway-images-pmlogo.gif (http://www.scoliosis-support.org/entrez/utils/fref.fcgi?PrId=3159&itool=AbstractPlus-def&uid=11961439&db=pubmed&url=http://meta.wkhealth.com/pt/pt-core/template-journal/lwwgateway/media/landingpage.htm?issn=0271-6798&volume=22&issue=3&spage=279) Links (http://javascript<b></b>:PopUpMenu2_Set(Menu11961439);)

Juvenile-onset scoliosis followed up to adulthood: orthopaedic and functional outcomes.

Masso PD (http://www.scoliosis-support.org/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Masso%20PD%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Meeropol E (http://www.scoliosis-support.org/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Meeropol%20E%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Lennon E (http://www.scoliosis-support.org/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Lennon%20E%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus).
Shriners Hospital for Children, Springfield, Massachusetts 01104, USA.

This retrospective review describes 52 children with juvenile-onset scoliosis followed up for at least 2 years after skeletal maturity and completion of treatment. The purpose was to compare clinical and radiographic characteristics and curve progression, as well as orthopaedic, functional, and psychosocial outcomes in children treated by observation, bracing, or surgery. Seventeen percent of patients were treated with observation and 33% with bracing; and 50% required surgery. Median rib-vertebral angle difference and mean level of apical vertebra differed by treatment group. Neither brace nor surgical treatment negatively affected self-esteem. Results suggest that juvenile scoliosis is more likely to progress, less likely to respond to bracing, and more likely to require surgical treatment than adolescent idiopathic scoliosis.


Orthop Clin North Am. (http://javascript<b></b>:AL_get(this,%20'jour',%20'Orthop%20Clin%20North%2 0Am.');) 1999 Jul;30(3):331-41, vii. Links (http://javascript<b></b>:PopUpMenu2_Set(Menu10393759);)


Infantile and juvenile scoliosis.

Dobbs MB (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Dobbs%20MB%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Weinstein SL (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Weinstein%20SL%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus).




Department of Orthopaedic Surgery, University of Iowa Hospitals and Clinics, Iowa City, Iowa 52242, USA.

The diagnosis and treatment of scoliosis in the infantile and juvenile age groups is a challenging and demanding endeavor. The diagnosis must be firmly established. Once a deformity has proven to be progressive, surgical intervention will likely be necessary because orthotic treatment is less effective in these cases. The surgeon is then faced with the dilemma of deciding on the most appropriate surgical treatment.

mark
24th July 2009, 03:48 PM
I may be a little thick here but pancake is talking about Juvenile Idiopathic Scoliosis your results refer to Adolescent Idiopathic Scoliosis.

Are these the same conditions or are they significantly different.

Again sorry for being a bit thick but i suffer from Scheuermann's.

mark

Sealy
24th July 2009, 04:05 PM
Mark,

I separated the categories. The last two abstracts apply to infantile and juvenile scoliosis. It stands to reason that a child with infantile or juvenile scoliosis will eventually reach the adolescent growth spurt at some point in their lives. The prognosis for these children is actually worse than AIS. Early treatment is critical. I belong to another support group and there are many children with infantile and juvenile scoliosis who are being successfully treated with non operative treatments such as night time bracing, spinecor, tlso and even exercise treatments. By sharing experiences, we learn from one another and our children receive better quality care. One of the mission statements of the group is that: The prognosis for infantile and juvenile scoliosis does not have to be bleak.

Dismissing this condition as trivial is a disservice to these children and their future. Here is a blurb taken from the scoliosis research society:

http://www.srs.org/professionals/education/juvenile/

Prognosis
Juvenile curves that reach 30° tend to continue to worsen without treatment. Bracing is often used to manage these curves, but nearly 95% of children in the juvenile age range go on to require surgical treatment.

tonibunny
24th July 2009, 04:29 PM
IIS and JIS are definitely more worrying in general than AIS.

I know that it's actually quite common for mild cases of IIS to spontaneously correct, but those cases that DO progress are a very grave concern.

There's a great danger than a doctor will identify IIS and then tell the parents to just watch and wait "because these curves usually go away by themselves" when they don't realise that moderate or severe curves (which are very rare) will usually progress rapidly - and for an infant, this is very dangerous!

I've no idea about how common it is for JIS to spontaneously correct though.

mark
24th July 2009, 05:39 PM
Mark,

I separated the categories. The last two abstracts apply to infantile and juvenile scoliosis. It stands to reason that a child with infantile or juvenile scoliosis will eventually reach the adolescent growth spurt at some point in their lives. The prognosis for these children is actually worse than AIS. Early treatment is critical. I belong to another support group and there are many children with infantile and juvenile scoliosis who are being successfully treated with non operative treatments such as night time bracing, spinecor, tlso and even exercise treatments. By sharing experiences, we learn from one another and our children receive better quality care. One of the mission statements of the group is that: The prognosis for infantile and juvenile scoliosis does not have to be bleak.

Dismissing this condition as trivial is a disservice to these children and their future. Here is a blurb taken from the scoliosis research society:

http://www.srs.org/professionals/education/juvenile/

Prognosis
Juvenile curves that reach 30° tend to continue to worsen without treatment. Bracing is often used to manage these curves, but nearly 95% of children in the juvenile age range go on to require surgical treatment.

Have i missed a post here, i don't recall reading anything in this thread by anyone dismissing anything scoliosis related as trivial.

Sealy
24th July 2009, 06:40 PM
Also, there are remarkably high rates of spontaneous correction. For example, some 90% of JUVENILE IS (I mistakenly wrote infantile at first) cases never require surgery as I understand. .

I would say that the above quote by Pancake is trivializing the condition and misleading people into doing nothing; but that's just my opinion! It is also at odds with the following statement by the Scoliosis Research Society:

"nearly 95% of children in the juvenile age range go on to require surgical treatment."

Pancake
24th July 2009, 07:05 PM
Communication is impossible when folks don't understand:

1. the limitations of literature
2. the points made in the literature
3. the intention of certain non-fusion surgical procedures
4. the reasons why ethicists okay certain studies
5. why ethicists are in a better position to say if a study is ethical than untrained mothers
6. why orthopedic surgeons know more than untrained mothers about surgical outcomes.

I find I can't even begin a conversation on any of these subjects without being blasted by a barrage of hysterical ignorance.

Sealy
24th July 2009, 07:08 PM
Communication is impossible when folks don't understand:

1. the limitations of literature
2. the points made in the literature
3. the intention of certain non-fusion surgical procedures
4. the reasons why ethicists okay certain studies
5. why ethicists are in a better position to say if a study is ethical than untrained mothers
6. why orthopedic surgeons know more than untrained mothers about surgical outcomes.

I find I can't even begin a conversation on any of these subjects without being blasted by a barrage of hysterical ignorance.


What an absolute pompous ass response!!!!!

mark
24th July 2009, 07:13 PM
Are right Sealy, just my opinion here, i don't think that anyone reading just one persons view point will make an individual decide on a course any course of action that is going to affect either them or there child the rest of there lives

To no one in paticulaqr and everyone who reads this thread i want to reiterate that each and every person on this site has an opinion and that opinion is valied everyone has the right to express views in as logical a fashion as they choose.

In this mine field of a curse we have all been dealt a crappy hand in who knows who is right and who is wrong, who is peddling false hope and who is the messiah

There is a whole plethera of research and written papers out there in the ether, who knows who is right and who is wrong, just because we belong to an eminent society it does not mean that what we produce is any better or worse than the biggest money grabbing snake oil selling charlatan out there

Its up to the individual person, parent, guardian whatever to decide which bit of evidence they choose to believe in that is why i am sceptical of any study who ever it has been done by.

All i want is for me not to have a hunchback, not to be called a hunchback and be proud of my body, be proud to walk down the street with my head held high

I am not taking sides in this debate i can see both sides of the argument what upsets me is when the debate becomes personal and that is not what sso is about, i have been guilty about this in the past and i have learned from my mistakes. I am a moderator on this site and i have offered my resignation a number of times because i have felt i have let the site and the site owner down.

Thankfully she has never accepted she knows what i am like, like toni said in her post we are passionate and we all have bad days after all we are not experts we are victims (some may argue with that view point but its how i feel). Humans being humans do go through bad times and like i said i for one have posted things that in hindsight i am ashamed of. I have to live with that and for someone with the mind that i have its hard, i can never let things go, i fret and i worry and it all plays on my mind until it becomes an obsession.

I have to live with and understand my own personality and for some one who has loathed himself most of his life and felt like a worthless piece of dog turd that is a hard cycle to break.

I think i have strayed too much of topic so i will stop. All i want is for people what ever there view, what ever there angle is who ever they are to have a peaceful debate

Sermon over

mark

Pancake
24th July 2009, 07:17 PM
Thread on JIS outcomes:

http://www.scoliosis.org/forum/showthread.php?t=9148

Note especially Post #8 by someone who actually knows what she is talking about.

-----

Thread I started in response to the FALSE information posted on SSO about VBS. (N.B. I didn't name names as I thought that would be too embarrassing for the person who made the claim on SSO but we know who it is.)

http://www.scoliosis.org/forum/showthread.php?t=8558

Note the responses by folks who actually know what they are talking about.

Also note the last post in that thread which is me voicing shock that you, Sealy, would post false information when my impression up to that time was that you were generally knowledgeable. I have since revised my impression after seeing your responses in this thread and reading the comments made to you on NSF when you were still posting there. You may know about IIS (I don't know either way) but I havent' yet identified another subject area where you are knowledgeable and haven't posted ignorant comments.

mark
24th July 2009, 07:19 PM
Pancake/Sealy please don't feel you can not post and be heard, your both passionate people about what you believe in and your views should be heard

I do admire the passion and love in both of you for your children

Sealy
24th July 2009, 07:21 PM
Thread on JIS outcomes:

http://www.scoliosis.org/forum/showthread.php?t=9148

Note especially Post #8 by someone who actually knows what she is talking about.

-----

Thread I started in response to the FALSE information posted on SSO about VBS. (N.B. I didn't name names as I thought that would be too embarrassing for the person who made the claim on SSO but we know who it is.)

http://www.scoliosis.org/forum/showthread.php?t=8558

Note the responses by folks who actually know what they are talking about.

Also note the last post in that thread which is me voicing shock that you, Sealy, would post false information when my impression up to that time was that you were generally knowledgeable. I have since revised my impression after seeing your responses in this thread and reading the comments made to you on NSF when you were still posting there. You may know about IIS (I don't know either way) but I havent' yet identified another subject area where you are knowledgeable and haven't posted ignorant comments.


Sorry, your point is ????

Pancake
24th July 2009, 07:23 PM
Sorry, your point is ????

Exactly.

Sealy
24th July 2009, 07:28 PM
I wasn't aware that the opinions of Dr. Lehey and the results of one child who was braced for three years followed by curve resolution constitutes a study or proves your point in any way.

Pancake
24th July 2009, 07:30 PM
I wasn't aware that the opinions of Dr. Lehey and the results of one child who was braced for three years followed by curve resolution constitutes a study.

That, of course, misses the point (again).

You should avoid commenting on VBS also.

Sealy
24th July 2009, 07:31 PM
Who gives you the right to say what I can or cannot comment on?????!

Pancake
24th July 2009, 07:31 PM
Who gives you the right to say what I can or cannot comment on?????!

Well, you keep going on and on about folks being mislead.

Sealy
24th July 2009, 07:33 PM
Just trying to keep folks like you in check! ;)

Pancake
24th July 2009, 07:34 PM
And the thing about VBS is very important and you completely mislead folks 180 degrees away from the truth on that. In other words, you weren't even a little bit correct.

I have no kid in line for VBS but I was so appalled at the misinformation you posted that I started that thread.

mark
24th July 2009, 07:48 PM
Judging by the posts on this thread i'm sure this debate is going to run and run and run and run.

I ask just one thing, please can we all respect one anothers view points, i would hate to have to start moderating anyones posts

Sealy
24th July 2009, 07:51 PM
Judging by the posts on this thread i'm sure this debate is going to run and run and run and run.

I ask just one thing, please can we all respect one anothers view points, i would hate to have to start moderating anyones posts

Mark,

You're such a sweetie!! I think a hug is in order. Here you go :D :squeeze:

Pancake
24th July 2009, 08:00 PM
Judging by the posts on this thread i'm sure this debate is going to run and run and run and run.

I ask just one thing, please can we all respect one anothers view points, i would hate to have to start moderating anyones posts

Mark,

Thanks for that.

Sealy came out swinging at me and I reacted in kind.

I regret that.

1,000 apologies to all.

sharon

Sealy
24th July 2009, 08:03 PM
And the thing about VBS is very important and you completely mislead folks 180 degrees away from the truth on that. In other words, you weren't even a little bit correct.

I have no kid in line for VBS but I was so appalled at the misinformation you posted that I started that thread.

With respect to VBS, are you referring to this thread? What misinformation are you talking about?

http://www.scoliosis-support.org/showthread.php?t=7279

mark
24th July 2009, 08:06 PM
No need for any one to apologise, i love healthy debate :D and i'm not trying to stifull it ;);) we all have opinions and that is very healthy, i just want everyones views to be aired

I know both you and Sealy only want the best for your children and you are both mind blowingly beautiful parents, i wish i had half the fight you two have

I raise a glass to both of you and long may you post and contribute the significant wealth of knowledge and passion you display for years to come

Mind i feel like the referee in a Casius Clay and George Forman fight lol and i say that with my tongue firmly in my cheek

Pancake
24th July 2009, 08:17 PM
This is the statement that compelled me to start the NSF thread...

"I’m quite certain every single child who undergoes vertebral stapling will have their spines fused at a later date."

1. What do you base that certainty on?

2. Why don't expert surgeons agree with you?

3. Are you as certain about that as you are about the (lack of) ethics involved in the BRAIST study which allows unbraced controls? (Hint: This is trick question... I'm telling you that because I like you. :))

Note Tonibunny's comments to you in that thread. She demonstrates a better understanding of the literature in this area.

I am guessing you get much of your information from SOSORT and their members. Is that correct? Some of those folks have made counterfactual statements in print.

It is not honest to START with a dogmatic position such as there must be an efficacious conservative treatment and then look for, or fashion, the evidence to support that. The honest approach is to look where the evidence is going and try to falsify it. What is left standing is likely though not definitely true. That is how science works best.

Sealy
24th July 2009, 08:25 PM
This is the statement that compelled me to start the NSF thread...

"I’m quite certain every single child who undergoes vertebral stapling will have their spines fused at a later date."

1. What do you base that certainty on?


I base that statement on a discussion between dr. Braun and colleagues when he presented his findings at the SRS meeting. That webcast is no longer available for public viewing.

Pancake
24th July 2009, 08:33 PM
I base that statement on a discussion between dr. Braun and colleagues when he presented his findings at the SRS meeting. That webcast is no longer available for public viewing.

Was Braun doing VBS? Do his findings agree with those who are (or others doing it)?

I suggest you need to consider that you misunderstood.

I further suggest you get the facts as that are (or were) when you wrote that.

Many, if not most, of your comments in the VBS thread are counterfactual or at least misleading.

Again, I have no dog in the VBS fight. I have been following along with the VBS stuff out of a casual interest. If I can detect counterfactual statements given only a casual interest, I suggest you consider researching the area more before commenting again.

Pancake
25th July 2009, 01:22 PM
The "famous" Dr. Braun and his webcast...

Okay I think I managed to track down what you are talking about. This was a presentation at a meeting that dealt with an animal model for VBS. But contrary to YOUR understanding and conclusion, here is a statement about the work that was included in an article by Betz et al. (2003)

http://journals.lww.com/spinejournal/pages/articleviewer.aspx?year=2003&issue=10151&article=00023&type=abstract

"The newly developed Nitinol staple has been tested in a goat model by Braun et al33-35 and was shown to be safe and have utility for arresting the iatrogenic curves of less than 70° in the goat."

Now have you ever seen or heard anyone say or write that all stapled children are a priori expected to be fused based on ONE presentation (not even a published study) on stapling iatrogenically-induced scoliosises in goats (or based on anything else)? You clearly misunderstood and yet your repeat this misunderstanding even years later. It doesn't even appear rational at this point. I think if we got the webcast you would be able to see where you misunderstood.

Now I see from exchanges on NSF that you have been accused of "bizarre" ideas with respect to VBS. Here is one thread where you aired these obviously bizarre ideas:

http://www.scoliosis.org/forum/archive/index.php/t-6437.html

I think this is an example of an obvious misunderstanding on your part that comes across as bizarre. Also, you make the same inscrutable claim against someone there about "editing posts." Your focus on this is also bizarre and likely reflects your own reasons for editing your posts.

You viewed an exchange, not even a peer-reviewed pub, between Braun and other researchers that happened several years ago and you think they concluded that all children who are stapled will need fusion. Some questions:

1. How sure are you that you understood what was being said?

2. Are you as sure of that as you are that the BRAIST study is unethical?

3. Why do ethicists disagree with you on the ethics of watching/waiting?

4. Why are there experienced board-certified pediatric orthopedic surgeons who admit the bracing literature is a mess?

5. Why do surgeons disagree with things you write.

6. Do you know how to vet statements?

7. How do you know if you understand something?

8. Do you understand why most published reseach results are false?

With respect to VBS:

1. Why do people who actually know what they are talking about disagree with you down the line?

2. Why do you appear to be the only person making the claims w.r.t. VBS that you are?

3. Do you think surgeons doing VBS know more than both you and the SOSORT types who just throw ignorant stones from the sidelines?

4. Why is the number of surgeons who are doing VBS going up?

5. Why is there at least one case so far where the girl avoided fusion and is done growing?

6. Why are some insurance companies now covering VBS thereby implying it is moving out of the "experimental" surgery category?

I don't expect you to answer anything here. I am trying to get you to realize that the way you have arrived at conclusions at least w.r.t. to VBS and likely with respect to many, many other matters is reckless and results in spreading bad information. I am trying to get you to consider you may not have mastered the fact case here.

Remember, there are honest ways to approach research and not so honest ways. You have to be able to tell the difference. SOSORT is not necessarily a good source of quality information and I fear that is your prime source based on what you write.

Sealy
25th July 2009, 02:22 PM
The "famous" Dr. Braun and his webcast...

Okay I think I managed to track down what you are talking about. This was a presentation at a meeting that dealt with an animal model for VBS. But contrary to YOUR understanding and conclusion, here is a statement about the work that was included in an article by Betz et al. (2003)

http://journals.lww.com/spinejournal/pages/articleviewer.aspx?year=2003&issue=10151&article=00023&type=abstract

"The newly developed Nitinol staple has been tested in a goat model by Braun et al33-35 and was shown to be safe and have utility for arresting the iatrogenic curves of less than 70° in the goat."


That's not the one! They were discussing children. Unless you're a member of the SRS, you will not see the webcast I'm referring to. The webcasts were available to the public at one time. But anyway.... I think this discussion has run its course and I have no desire to bicker with you any further.

I do plan to file a grievance with the SRS with respect to Dr. Lehey's blog.

BeckyH
25th July 2009, 02:27 PM
pancake, sealy is entitled to her opinion. speaking purely for myself, i have opinions which are backed up by nothing scientific, things i have judged on feeling and common sense in the absence of fact. nobody has to justify anything and i certainly have never read anything on this forum where i could accuse sealy of scaremongering other patients. on the contrary, she is very supportive. i am not bothered by what sealy says on other forums: i do not moderate those, they are not my responsibility and a lot of our member choose not to visit them. they are not of our concern unless we wish them to be.

i think it's unfair to shoot someone down as being ignorant, and to accuse them of not being able to "understand" things. i think that sealy has been very brave in her approach of putting her daughter in a spinecor brace for the last few years when they have a very limited pool of users. she has been rewarded with success, and yes unfortunately others have been unlucky, but spinecor is a treatment that i myself doubted several years ago and i seem to be being proven wrong. similarly in the last few years, we have seen the emergence and disappearance (after problems occurred) of keyhole fusion surgery.

without some bravery by patients and their carers, we will not move forward and criticisms of people making decisions based on anything other than cold hard facts could mean we go backwards.

i am all for healthy debate but i would appreciate it if things were kept civil and polite, rather than insults being batted around like two children fighting in a playground.

Sealy
25th July 2009, 02:29 PM
Thanks Becky! :squeeze:

Pancake
25th July 2009, 02:35 PM
I do plan to file a grievance with the SRS with respect to Dr. Lehey's blog.

Well, if you do that, make sure you use is actual name, "Hey" not "lehey."

Normally, I would never point out someone getting a name wrong. But in your particular case, it is of a piece with a casual, untrained approach to the literature that is common among lay folks.

So now I'm going to keep track of folks you have "grievances" with:

1. the ethicists for the BRAIST study

2. experienced board-certified pediatric and adult orthopedic surgeons doing fusions.

3. Dr. Hey who is an experienced board-certified orthopedic SRS surgeon.

As the list grows, I suggest you take a deep breath and try to appreciate the spectacle of one untrained mother who is a lone voice of counterfactual information writing ignorant rants to professional medical societies. They are going to see you coming from a mile away.

Sealy
25th July 2009, 02:39 PM
I'll take my chances. :tiphat: Good day to you!

Pancake
25th July 2009, 02:46 PM
pancake, sealy is entitled to her opinion. speaking purely for myself, i have opinions which are backed up by nothing scientific, things i have judged on feeling and common sense in the absence of fact. nobody has to justify anything and i certainly have never read anything on this forum where i could accuse sealy of scaremongering other patients. on the contrary, she is very supportive.

That would be fine if Sealy admitted she based her opinions on nothing factual. But she doesn't admit that.

i think it's unfair to shoot someone down as being ignorant, and to accuse them of not being able to "understand" things. i think that sealy has been very brave in her approach of putting her daughter in a spinecor brace for the last few years when they have a very limited pool of users. she has been rewarded with success, and yes unfortunately others have been unlucky, but spinecor is a treatment that i myself doubted several years ago and i seem to be being proven wrong. See here you can't say she was "rewarded" because there are no quality studies of Spincecor to date and what is out there is disbelieved by at least some surgeons. Spontaneous corrections are known to occur. Also we have an actual case of a misreading in-brace radiograph documented on NSF. I'm guessing this has been documented before and that likely drives the dismissal of the Spinecor literature by some surgeons with no dog in the fight.

without some bravery by patients and their carers, we will not move forward and criticisms of people making decisions based on anything other than cold hard facts could mean we go backwards.Bravery is one thing. Not understanding why the bracing literature is a miasma is another.

i am all for healthy debate but i would appreciate it if things were kept civil and polite, rather than insults being batted around like two children fighting in a playground.Ignorance is not a crime. But continually misleading folks with counterfactual material becomes reckless at some point. Do you also think it's wrong to criticize other counterfactual positions like creationism? Can't we correct counterfactual postions without being accused of insulting folks? Isn't that the correct thing to do?

BeckyH
25th July 2009, 02:50 PM
See here you can't say she was "rewarded" because there are no quality studies of Spincecor to date and what is out there is disbelieved by at least some surgeons.

i believe i just did say she was rewarded, because she has been: sealy made a choice about her child's care. this choice has proven successful. therefore, this cannot be termed as a failure or a mistake, it's quite the opposite.

as i said before, sealy has not misled anyone around here. your purpose seems to have been to come here and change our opinion of someone's character, which i neither understand nor like.

Pancake
25th July 2009, 02:58 PM
i believe i just did say she was rewarded, because she has been: sealy made a choice about her child's care. this choice has proven successful. therefore, this cannot be termed as a failure or a mistake, it's quite the opposite.

Perhaps I wasn't clear.

There is no evidence the brace did anything just because her daughter's curve didn't progress. There are surprisingly large rates of not only spontaneous halting of curves but also complete correction. They are not fringe cases. Someone just posted (Post #14) to this thread that I started that their daughter's JIS curve spontaneously resolved completely just with watching and watching...

http://www.scoliosis.org/forum/showthread.php?t=9148

Now had she been in a Spinecor or any brace, isn't it obvious you and Sealy would have INCORRECTLY ASSUMED it was the brace? And yet this child resolved withOUT a brace. Do you see the problem with your analysis and how easily you would have been fooled? The point of science is to AVOID being fooled like this through the use of large controlled studies.

There is no evidence any brace is more effective than watching and watching. The proof of that statement is the very existence of the BRAIST study.... no need to take my word for it.

Pancake
25th July 2009, 03:03 PM
Conservative treatments don't automatically become efficacious just because people think they must be so. That is a faith position. Ignorantly lashing out at people who are evidenced based like Dr. Hey isn't going to help anything.

Science is the ONLY way we can ever know anything real.

Science is a way of knowing. Faith is a way of pretending to know.

BeckyH
25th July 2009, 03:05 PM
Perhaps I wasn't clear.

There is no evidence the brace did anything just because her daughter's curve didn't progress. There are surprisingly large rates of not only spontaneous halting of curves but also complete correction. They are not fringe cases. Someone just posted (Post #14) to this thread that I started that their daughter's JIS curve spontaneously resolved completely just with watching and watching...

http://www.scoliosis.org/forum/showthread.php?t=9148

Now had she been in a Spinecor or any brace, isn't it obvious you and Sealy would have INCORRECTLY ASSUMED it was the brace? And yet this child resolved withOUT a brace. Do you see the problem with your analysis and how easily you would have been fooled? The point of science is to AVOID being fooled like this through the use of large controlled studies.

There is no evidence any brace is more effective than watching and watching. The proof of that statement is the very existence of the BRAIST study.... no need to take my word for it.

thanks for the clarification but i understood the inference of your post perfectly. unfortunately, we will never know why one child or another resolves, whether braced or not - this is impossible to prove and i don't know why you seek the impossible.

i myself don't believe in miracles, but i know that a lot of parents fight hard for their children whether they seek to take a surgical or non-surgical approach. as you seem to care so much about proving things, the one thing which has been proven about scoliosis is that it's a progressive condition and doing nothing is, in most cases, a very very dangerous option.

i find it incredibly hard to believe that a curve such as the one sealy's daughter presented with would have resolved completely on its own: there are people still today who go undiagnosed and don't get any better by themselves, and suffer the consequences. no massive worldwide authenticated study will make me believe that significant numbers of curvatures self-resolve, and i think it's as irresponsible of you as you claim other people to be in perpetuating this belief.

Pancake
25th July 2009, 03:09 PM
That's not the one! They were discussing children.

Okay can you point me to a single pub in a peer-reviewed journal by a "Braun" on VBS in children?

I can't find it but I'd like to be edified on that if these pubs exist.

If there are no published studies in the peer-reviewed literature from Braun on VBS in children then your statements are reckless BY definition. Statements made at scientific meetings that are overheard by untrained mothers are a recipe for misunderstanding.

Pancake
25th July 2009, 03:18 PM
thanks for the clarification but i understood the inference of your post perfectly. unfortunately, we will never know why one child or another resolves, whether braced or not - this is impossible to prove and i don't know why you seek the impossible.

If we can't know then why did you assume it was the Spinecor brace that worked and that Sealy was rewarded?

i myself don't believe in miracles, but i know that a lot of parents fight hard for their children whether they seek to take a surgical or non-surgical approach. as you seem to care so much about proving things, the one thing which has been proven about scoliosis is that it's a progressive condition and doing nothing is, in most cases, a very very dangerous option.Actually, only a VERY small percentage of all scoilosis cases ever progress to surgery territory. So I don't know where you get that claim.

And if more folks were interested in "proving things," society wouldn't be plagued by:

astrology
most of chiro
homeopathy
other medical quackery
creationism
UFO belief
religion
Elvis sightings
etc.
etc.
etc.
etc.

i find it incredibly hard to believe that a curve such as the one sealy's daughter presented with would have resolved completely on its own: there are people still today who go undiagnosed and don't get any better by themselves, and suffer the consequences. no massive worldwide authenticated study will make me believe that significant numbers of curvatures self-resolve, and i think it's as irresponsible of you as you claim other people to be in perpetuating this belief.Arguments from personal incredulity are not evidence.

I posted some statistics I found from a large screening of ~14,000 kids as I recall where a surprising number spontaneous showed halting of progression and about 10% as I recall corrected completely spontaneously. It's on the NSF site for folks interested.

Science is the ONLY way of knowing anything. Data. Evidence.

Pancake
25th July 2009, 03:25 PM
Okay I found that post... it was a 5 year prospective study of ~85,000 kids which found ~1,400 cases. More than one quarter spontaneously regressed with about 10% completely resolved.

http://www.scoliosis.org/forum/showpost.php?p=69520&postcount=21

----

I stumbled across this when looking for some progression curves...

Heary and Albert, p.95 (http://books.google.com/books?id=cZu3_EezS_wC&pg=PA95&lpg=PA95&dq=graph+ais+risk+of+progression&source=bl&ots=JrfIzlun-W&sig=yMO2NXTKIZNeviIQdyGMXZrsYO4&hl=en&sa=X&oi=book_result&resnum=1&ct=result) (bottom right)

http://books.google.com/books?id=cZu3_EezS_wC&pg=PA95&lpg=PA95&dq=graph+ais+risk+of+progression&source=bl&ots=JrfIzlun-W&sig=yMO2NXTKIZNeviIQdyGMXZrsYO4&hl=en&sa=X&oi=book_result&resnum=1&ct=result

A 5-year prospective study of 85,622 kids found 1,436 kids with scoliosis.

Results over an average observation of 3.2 years:

Progression - 14.7%
Spontaneous improvement of at least 5* - 27.4%
Complete spontaneous resolution - 9.5%

Here is yet another reason why controls are needed. About twice as many kids improved compared to the kids who got worse. And significantly, almost 10% of the kids in this study had a complete spontaneous resolution of the scoliosis.

Had they happened to be enrolled in a Spinecor study at the time, these spontaneous improvement and resolutions would have be chalked up to the efficacy of the Spinecor brace. The bracing literature that doesn't address controls is clearly part of the reason why most published research results are false.

We can't assume that any child in a Spinecor brace would not have completely resolved on their own absent the brace.

This literature has to be cleaned up quickly in my opinion.

-------

That's my post from 10 January 2009.

titch
25th July 2009, 03:26 PM
OK. This is getting out of hand. The discussion, the subject of it, is fine - it's stuff that it's very valuable for us to discuss. However, this particular thread has descended from discussion into bickering and also tended to take on a rather personal tone. As such, I'm going to lock it for a few days, and suggest that participants take a deep breath and let it out slowly, and then leave it be for a couple of days.

I will be very happy to review the thread again, and start some new ones based on the main points of contention which have arisen here, and hopefully start a more constructive discussion on these things. Again, this will not be for a couple of days because I think actually we all need a break here. Feel free to PM me or otherwise nudge me if it doesn't get done soon enough by me or another mod, but otherwise consider it an end to this particular thread, ok?

And, because I think we need one, here's a group hug :ghug: :D