Stop trying to convince that official western medical community is the only option..

[mariaf]

Both bracing and staplling have cured some patients - reducing a curve to below the scoliosis threshold and leaving the patient with a normal (unfused) spine.

If you are referring to AIS cases, I was under the impression that most orthos do not believe that bracing will permanently correct a curve in these cases, AND hold that correction after the patient stops wearing the brace. Maybe I'm wrong.

As for stapling, it can accomplish this, although of course, that’s not the case for everyone.

One example comes to mind (probably because I remain in touch with the mom) of a 12 year-old boy stapled for a 40ish curve. He is now 16 ½ and his curve is in the teens. Mom believes he has already gone through his rapid growth spurt. IMHO, I don’t see how this could have been achieved with bracing (even forgetting the fact that, according to mom, the child would probably not have been overly compliant).

Again, everyone’s results will be different but the above case is far from the only example of this – as I said, it came to mind because I’ve been closely following this child.

In addition, there have been patients whose correction from stapling has held past skeletal maturity. The first patients were 'stapled' about 11 years ago so many are now well past the end of growth.

I certainly cannot say that my son has been ‘cured’ because he still has a good amount of growth remaining. However, to me his case is another example of VBS achieving what bracing could not. My son wore a brace full time for about 3 years as a young child and while it basically held his curve, we saw no improvement at all in his curve. (See my signature for stapling results). I also will never know (although I have strong beliefs) if he would have avoided multiple surgeries (i.e., growing rods) had we stayed the course with bracing.

So, personally, I don’t put bracing and VBS in the same category (again, that’s just MY opinion based on what I’ve seen over the years).

I believe that tethering holds even more promise based on the results so far and the wider patient base that can benefit from it.

[flerc]

Fusion cannot cure, because it does not return the spine to a normal state and it creates its own set of problems.

The goal, one would think, would be to increase the types of patients for whom a cure is possible and to do away with fusion altogether, since it is the only current treatment with permanently uncures the spine. It's the only known dead-end.

Yes Hdugger.. if it was not be a sad fact as it is, it would not be so perverse what is happening in this forum and probably would have not sense to demand what I'm demanding.

First of all, do you agree with my assertion []

[the categorical assertion
'There is no evidence any conservative treatment has prevented any surgery' and hundreds meaning the same

is at least a so much convincing argument to believe what follows in those posts:

‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’]

or not?

I'm waiting for the answer (Y/N) .. or the updating/deleting of all those posts.

[mariaf]

On bracing, I believe bracing has cured scoliosis in some JIS patients (the same patients for whom stapling is also most effective).

Yes, I would not find it surprising if, in some cases, bracing 'cured' scoliosis in a JIS patient.

The difference comes with regard to AIS cases. While stapling may not be quite as effective for AIS patients, as compared to JIS patients (if for no other reason because of the amount of growth remaining), it has 'cured' scoliosis in some AIS cases, as referenced above, including some who have reached skeletal maturity.

Whereas, to my knowledge, bracing has never cured scoliosis in an AIS patient.

p.s. I do agree that in a lot of cases (not all), a curve that would respond well to bracing would respond well to VBS and vice versa. However, that is not always the case, for example with my son. I also know of other patients whose curves were progressing despite bracing but who responded well to stapling.

I, however, personally don't think that a curve that was too aggressive and did not respond well to VBS would have ever been held (let alone corrected) with bracing.

So while VBS and bracing are similar in some respects; in other ways they are very different.

[mariaf]

I think our knowledge is too asymmetric to make sense of that information.

There are a limited number of stapling patients, and you're in a pretty good position to be able to acquire information on most of them. In particular, you're likely to hear about any unusual result (such as stapling curing an AIS patient). We don't have any way of getting the same kind of feedback from bracing patients. Unless we happened to know one personally, or unless a doctor published a case study, it would be like the tree in the forest. That doesn't mean that it has happened, it just means that it could easily have happened without either of us being any the wiser for it

I agree with some of what you said, but I would not necessarily call the case I sited of stapling curing an AIS patient unusual; nor do I feel that I am more likely to hear more about any one particular outcome. I spend a considerable amount of time following a lot of these VBS kids and I think (or at least hope) that I have developed somewhat of a feel regarding various types of cases, outcomes, etc.

I also think that if there have been cases of bracing curing AIS we would have heard about it, although nobody can prove it or ever know for sure. But I think the fact that most orthos would not say that bracing can cure AIS would bear this out.

[Pooka1]

I also think that if there have been cases of bracing curing AIS we would have heard about it, although nobody can prove it or ever know for sure. But I think the fact that most orthos would not say that bracing can cure AIS would bear this out.

Exactly so, Maria. Like a broken record... braces are not claimed to reduce AIS curves. They are only claimed to hopefully prevent progression.

The only trained people I have heard come anywhere close to claiming a brace can permanently reduce an AIS curve is the Montreal crowd but their literature is widely disregarded by their peers as far as I know. Indeed we have seen evidence on this forum for why their peers widely disregard this literature.

[mariaf]

On a related note, I know that tethering is very new but I am finding it more and more difficult not to get really excited about it.

I just got a text from a mom who was in Philly today for her daughter's 3 month checkup. Her daughter (age 13, I believe) had a 47 degree curve before her tethering surgery - and today mom said she cried when she saw the x-ray. The curve was at 13 degrees!!!!! It had been somewhere around 20 at the last checkup (probably either 1 month or 6 weeks postop).

There is another child I know of who started out in the 40's as well and is in the teens now after having tethering last November. And still a few others who I don't know personally but whose parents have reported very good results so far. Some of these kids see Dr. Newton as well, who is also finding tethering to yield excellent results.

As I said, it's very new but the results are so promising.

[Pooka1]

Very exciting! It sounds like tethering had a real chance of obviating many and hopefully most fusions. Maybe someone will get a Nobel.

[flerc]

On bracing, I believe bracing has cured scoliosis in some JIS patients (the same patients for whom stapling is also most effective).

Hdugger I don’t know if you have seen this article http://europepmc.org/articles/PMC308...Sf7fxWA0MwTD.0
It seems to enlarge the window of people that may be cured.

I share your puzzlement. In my previous experience with medicine-based forums (for cancer, for example) the emphasis was always on the cure. Non-cure treatments were accepted as a necessary evil, but no more.

I cannot figure out why in this forum there is a feverish defense of standard practice (which wouldn't seem to need a defense, since it's the customary treatment), instead of the normal frustration patients usually feel about a non-cure treatment.

You seem to be the only one in the world who also thinks the same. But not of course.. many people around the world knowing this forum think the same, but prefer to keep silence.
I perfectly know of course I’m not the only one in the world absolutely convinced that this feverish defense of standard practice in the biggest scoliosis forum of the world, contributes to make it a perpetual practice.. Spinal fusion is already a CENTENNIAL practice!

I’m sure that all the evil of the world is not only because the bad people provoking it, but mainly because the good people not doing anything to not allow it.
That ‘good’ people probably may be seen as good anyway, but at least they are accomplices.
And certainly I don’t want feel as an accomplice of the perversion I’m seeing here since long time ago.

If in this forum as you said, instead of expressing frustation, they prefer to defend the standard practice (which really not seem to need any defense as you said).. but.. AT LEAST, it should to be enough clear for everyone here the influence provoked in someone facing an extremely difficult decision and 'new' in theese issues to read categorical assertions as I quoted in this thread and may be seen at least hundreds of times in this forum, trying to convince everyone to think as a member of that club. And it should be enough clear also for them that is something perverse and should to reacts to it do something as I’m doing, but not..

[rohrer01]

Someone correct me if I'm wrong. But in keeping on topic with this thread, don't stapling and tethering fall into the "official western medical community" category as methods for treating scoliosis?

Flerc, is the real problem you are having with the western medical community the fact that spinal fusions are regularly done as a dominant form of treatment?

I haven't heard you object to stapling or tethering. Those are also surgical methods of treating scoliosis as I said in an earlier post. These surgical methods have to be done on much smaller curves (usually) than most kids that are fused. These kids are therefore undergoing "surgery" (albeit less invasive surgery) at much younger ages.

In any case, I also agree that a fusionless way to correct scoliosis is ideal. Right now these new and exciting procedures hold promise. Since the oldest techniques are only 11 years old, we have no way of knowing long term outcomes at this point. Yes, some of these kids are now adults. What we don't know is what will happen during middle age and beyond. Even with this lack of knowledge, I would still opt for this treatment, if at all possible, before consenting to a fusion. But for some people, not all, fusion is their only choice, especially for kids with very large curves (such as Elias) and adults.

The good thing about fusionless correction is that if problems do arise later on, other methods of treatment may still be viable. Once a person is fused, it's permanent.

I also agree with Jess, that for many of us, finding a therapy to alleviate the pain is cure enough for us. Spinal fusion often causes much more pain in some people while alleviating it in others. No one knows why this is true, either.

I personally would hold off on saying that anyone has been "cured" of scoliosis at this point, even if the curve has been brought down to less than 10* (the criteria for being considered scoliosis). The reason I say this is because no one knows what will happen later on and the underlying problem that caused the scoliosis is/may still be present. Also, they still carry the genes and can pass along. I would feel more comfortable in saying there is a treatment that will resolve the spinal curvature.

[jrnyc]

how is bracing "standard medicine"??
standard for whom? for kids?
it is certainly not "standard medicine" for adults...
and it's success has not been proven long term....
also, i am not sure what "bread and butter" tx is...
not fusion...fusion is not a basic tx, since it involves a radical
surgical procedure...quite different from an injection that will
wear off in a few months, if the injection even makes a difference
at all...
maybe some day, all scoli can be stopped, or reversed, or prevented
from progressing for children, so the adult population of scoli patients
becomes something in the distant past....
maybe after decades, that will come to be true...
perhaps some other tx will be found during that same time period.
but it is not always about "returning" the spine to it's
"normal straight" position...some patients have no memory of their
spines ever being "normal" or "straight"

jess

[Pooka1]

but it is not always about "returning" the spine to it's
"normal straight" position...some patients have no memory of their
spines ever being "normal" or "straight"

jess

Jess,

That is a very interesting and valid point. I suspect my daughters do not remember life before fusion. When I asked my one daughter to see how far to the side she could bend, she couldn't remember if it was different from before she was fused. This is normal to her. It would be hard to convince my daughters that they are not cured although they realize there are no out-year patients with this instrumentation. They look and feel normal from their perspective.

For many adults, returning to a non-pan state would be the prize I imagine.

Thanks for that post.

Sharon

[rohrer01]

It's too bad that the Cobb angle has become such an obsession, when clearly it's pain, mobility or deformity that actually get to people, and none of these are adequately reflected in the Cobb angle measurement. That leave us measuring success in degrees, which clearly is not the real measure of success.

Hdugger,
I agree on all of your above post, but especially this part. There are so few people with super high deformities, like myself and your son (realize different causes), that there really aren't any doctors out there who see enough of us to make me feel secure in seeing them. I am not a cobb angle. I am a person with painful scoliosis, no matter the degree of the cobb. Do I want to be fused, no. I want pain relief NOT in the form of pills. If I can't take it anymore and fusion is the last option, will I do it? I don't know. If it's botched, it's permanent. On the other hand, if all the other treatments fail to alleviate my pain and I'm stuck on pills anyway, who knows what I would decide.

I know of others on this forum with very small curves, <30*, who are/were in a tremendous amount of pain. Remember Davis? I think he opted for fusion. We (meaning forum members) all treated him like he was nuts and he's not here anymore. But really, who are any of us to say how much pain he was in? I hope his fusion helped him. I wish he would come back and let us know. It makes me wonder if tethering an adult with a curve that size would work. I realize the premise behind tethering is that they kind of "tie" the vertebrae totether and as the person grows, the tied side can't grow thus straightening the spine. During growth there has to be a tremendous amount of tension on that tether line, so why not try in adults that don't have a lot of other problems like arthritis, DDD, stenosis, and the lot that comes with age. Surely they have a ratcheting system that would make it not so difficult for the surgeon. There is a LONG way to go with this research.


Flerc,
I honestly would try most things out there. The problem for me is that I live in the "Medical West" and my insurance will NOT pay for most alternative treatments. I had to pay for accupuncture out of my own pocket. I can't afford to try so many things because of the system I live in. Almost half my husbands wages go to pay for insurance and my other medical expenses, which makes us poor moneywise.

[rohrer01]

I think bracing is a standard "bread and butter" treatment because it is done frequently AND brings in a lot of money. It's sad for the kids, though. =(

[Pooka1]

I think bracing is a standard "bread and butter" treatment because it is done frequently AND brings in a lot of money. It's sad for the kids, though. =(

Bracing is very unusual as far as I know in that it is the standard of care despite being obviously experimental. This throws people because they cannot reconcile it. It can't be reconciled logically. As I type, surgeons from at least 26 institutions agree that it is ethical to randomize kids to a no-brace control group. If that isn't experimental, I don't know what is.

The scandal is I suspect there are people on this group would would withhold the very fact of the BrAIST study from kids if the surgeon who prescribed the brace didn't mention it to them. I think there are people here who actually think some people are not entitled to information. Well I think parents and kids need to know things like this because they can't accumulate a collective thousand years of experience like the BrAIST surgeons. They don't have the time.

[Pooka1]

I think bracing is a standard "bread and butter" treatment because it is done frequently AND brings in a lot of money. It's sad for the kids, though. =(

Actually, I think because it is the standard of care, surgeons expose themselves to malpractice lawsuits if they don't prescribe it. It is purely defensive. The designation of standard of care needs to change if kids are going to be treated humanely. It won't happen before then.

If you think about it, VBS and tethering, as surgical procedures, would be unethical per se if there was good evidence bracing worked. And yet here they are.

If it doesn't make sense then it probably isn't true. As in everything.