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

[Pooka1]

but I believe

This is faith. You have to switch to science and evidence to get anywhere. Your failure to do this is why you are struggling with understanding this material.

[flerc]

This is faith. You have to switch to science and evidence to get anywhere. Your failure to do this is why you are struggling with understanding this material.

mm.. It would have been more correct to say 'I understand'. But if I was wrong (I ever assumed this possibility) I hear you. I'm interested in this issue.

[leahdragonfly]

As I know is used up today. Anyway you should to understand what I said, that certainly is different to promote the use of Milwaukee.

Also if you were sure that in this way she/he may avoid fusion? Do you want I copy a photo of the back during surgery? Again, I don't promoting his use.. I don't know if other braces are better and no so hard.

Hi flerc,

as I mentioned previously, I do not intent to engage in arguing with you about bracing.

That said, I would NEVER put my child in a Milwaukee brace EVEN IF it was guaranteed to avoid surgery. If you read my signature you will see that I have been fused T8-sacrum. I also wore a brace in junior high so I have a unique perspective on bracing and surgery that many others don't have. It is really easy to be cavalier about the difficulty of bracing when you haven't worn one yourself. I wore a brace. I ended up my growth with two 20-degree curves. I should not have needed surgery. But my curves increased rapidly after age 40 with my lumbar curve ending at 47 degrees, highly degenerated and collapsing. I had surgery and now I can say my back is for the most part pain-free. I certainly don't love being fused, but I do love that my severe daily back pain is gone. Am I glad I wore the brace, no, I wish I never had to, because it did not save me from surgery.

Fast forward to my child, who at age 6 was diagnosed with scoliosis. I would have had to commit to keeping her in a brace for approx 8-10 YEARS. Years. Half of her childhood, 24/7. I elected to take her out of the brace after less than one miserable year because her heart was broken in it, and it was negatively affecting our relationship. Is that worth it to avoid surgery? Not at my house it's not. So she had stapling, and she has never looked back. To her it was wonderful. She describes 3 days of not feeling well, then there was no stopping her. There is no way she would have worn that brace to Kindergarten, much less elementary school or middle school. Surgery was the best option for her. True, it was only VBS, a much more minimal surgery than fusion, but it was still the best choice by far. And I am a nurse so I am fully aware of what the back looks like during surgery.

My young son has a curve currently around 15 degrees. We were offered bracing, which we declined, knowing full well he may need surgery. If/when his curve progresses he will have VBS if it is appropriate.

So to answer your question, would I make my child endure years of bracing to avoid surgery, no, absolutely not.

I hope my unique experience can add to your understanding of bracing and surgery.

[Pooka1]

Beautifully stated. Completely child-centered.

I also would NEVER put my child in a Milwaukee brace even with a guarantee of avoiding fusion for life. Life is very short. Of course there is no guarantee with that or any brace so this is a moot point.

Bracing, other than night-time bending braces which are pretty well tolerated, is worse than the disease to many children. Unless and until they isolate any group of children who will avoid surgery for life, and then be able to tell the child they will avoid surgery for life if they wear a brace, this treatment will never be humane.

There are lots of parents who seem to be operating under an incomplete set of facts. And that goes double for the children. It's cruel.

Sharon

Hi flerc,

as I mentioned previously, I do not intent to engage in arguing with you about bracing.

That said, I would NEVER put my child in a Milwaukee brace EVEN IF it was guaranteed to avoid surgery. If you read my signature you will see that I have been fused T8-sacrum. I also wore a brace in junior high so I have a unique perspective on bracing and surgery that many others don't have. It is really easy to be cavalier about the difficulty of bracing when you haven't worn one yourself. I wore a brace. I ended up my growth with two 20-degree curves. I should not have needed surgery. But my curves increased rapidly after age 40 with my lumbar curve ending at 47 degrees, highly degenerated and collapsing. I had surgery and now I can say my back is for the most part pain-free. I certainly don't love being fused, but I do love that my severe daily back pain is gone. Am I glad I wore the brace, no, I wish I never had to, because it did not save me from surgery.

Fast forward to my child, who at age 6 was diagnosed with scoliosis. I would have had to commit to keeping her in a brace for approx 8-10 YEARS. Years. Half of her childhood, 24/7. I elected to take her out of the brace after less than one miserable year because her heart was broken in it, and it was negatively affecting our relationship. Is that worth it to avoid surgery? Not at my house it's not. So she had stapling, and she has never looked back. To her it was wonderful. She describes 3 days of not feeling well, then there was no stopping her. There is no way she would have worn that brace to Kindergarten, much less elementary school or middle school. Surgery was the best option for her. True, it was only VBS, a much more minimal surgery than fusion, but it was still the best choice by far. And I am a nurse so I am fully aware of what the back looks like during surgery.

My young son has a curve currently around 15 degrees. We were offered bracing, which we declined, knowing full well he may need surgery. If/when his curve progresses he will have VBS if it is appropriate.

So to answer your question, would I make my child endure years of bracing to avoid surgery, no, absolutely not.

I hope my unique experience can add to your understanding of bracing and surgery.

[leahdragonfly]

Vbs is not following a somewhat different principle and much more direct than bracing as you said, it should to be a totally different principle.
Correct me please but I believe the direct pressure on the growth plates has to do with doing more symmetryc the asymmetric vertebral growth, governed by Wolff’s law. A brace used under the right conditions also do the same, (but as I said in not a so much direct way as Vbs) because decompress the concave side, so the pressure is more even in both sides and if it is used under the right conditions, as Vbs works all the time. So I don't see a so great difference in the principles..

Hi flerc,

I will try to help you understand VBS as you are not quite on the right track yet. The staples directly squeeze the growth plates on the convex side of the curve. They apply constant pressure to compress the growth plates themselves to slow down their overgrowth. That is the principle that causes VBS to work. The effect is not, as you had thought, that it straightens and thus unloads the spine. It is the direct pressure on the growth plates that works. Have you seen an x-ray of staples in place? It is helpful to see and I can post one if you are not familiar with how the staples are applied to the spine.

Bracing holds the spine in a straightened position which unloads the spine and simply hopes to keep the spine from curving further based on the Heuter-Volkman principle (which says pressure/compression on the growth plates causes growth to slow down, whereas traction or lack of pressure on the growth plates causes growth to speed up). Does that make sense? The physiologic difference in VBS vs bracing is somewhat subtle to the lay person, but very significant. Yes, VBS is frequently referred to as an "internal brace" because that makes sense to people. Nobody really wants to hear much about the Heuter-Volkman principle!

[flerc]

Leahdragonfly, Thanks for your Vbs lesson. Certainly this is the kind of chat I want to have here. Really I hate so much the war against surgical and non surgical fans, brace fans and brace detractors.. I believe we have a problem in common, someone in much dramatic way than others, but we are in the same boat. And nobody here and probably in all the world may say to everyone, what is the best to do or not to do in each particualr case.

Certainly is a brillant idea compresing the convex side to slow down their overgrowth. I don’t know if I know about other case (probably thetering) of a solution (mainly a surgery one) not following the predominant paradigm of the official western medical community.. is an inteligent way to use the H-W principle. Certainly I have heard about cases of (surely) mild curves and a very much flexible spine, where the curve was reversed (form right to left) and holded with a brace, so the same mechanism was achieved. But even not talking about something so extreme, I understand braces (used under..) is also following the same principle since decopressing the concave side leads to more growth, but also compress more the convex side.. the mechanism is different and of course the procedure, but what I wanted to say is that Vbs (I remains conscious I may be wrong in what I’m saying) is the evidence known by everyone that the principle works! so if it may be used in a best way in braces than up today is used, they should to be more effectives.

I'll continue soon

[flerc]

Not soon, sorry..
I perfectly understand your rejection for brace and thanks for share your story. You were lucky to get an alternative as Vbs for your daughter.. millons of people around the world has not this option in their country, and brace are shown as the only option in order to avoid fusion. I understand brace not worked for you and how traumatic was for your daughter. Certainly if not works has not any good side of course.. except delaying fusion, something not ever happening.

I absolutely respect your point of view, but I don’t agree brace even avoiding surgery is worse than fusion. Maybe comparing the worst, the more traumatic brace case against the best fusion case. But since brace is only for some years, I don`t believe many parents may decide for fusion. It's really what I think and of course I may be wrong.

But I’m not claiming that fusion has not to be used. I claim for replacing it for something better, since at least for me is impossible to imagine a way to improve it.. only replacing the bone for a variable consistency ‘bone’..
I think we should not claim to substract resources, we should claim to add resources, improve current resources or replace it for something better and Vbs cannot replace at least up to now braces.

And I’m sure braces may be improved.. without any doubt the protocol should to be updated. What kind of principle may act if it is used without a curve reduction? in a stiff spine? Only some hours per day? Which could be the sense? Maybe I has not enough imagination or knowledge, but I cannot understand it. Certainly not holding a reduction in a stiff spine I understand should to be something really dangerous, deforming the rib cage, making increase the curve inside the trunk..
Is the same for me to a protocol saying to jump with a heavy weight over the shoulders in a way that spine be collapsed. Which could be the sense? If would be done without collapsing the spine could have much sense. Few differences may lead to absolutely different outcomes.

I really agree with this I have read few days ago
‘The majority of studies on bracing acknowledge that compliance with brace wear is a major problem. A study on part-time bracing for AIS reported that although the average correction with part-time brace wear was less than that with full-time, compliance was better compared with studies involving full-time bracing (5). Perhaps the improved results of derotational casting compared with bracing, is because the cast cannot be removed so the corrective forces are applied 24 hours per day. If a brace was socially and cosmetically accepted so the patient would were it 24 hours per day, bracing may be a solution for the nonfusion treatment of AIS.’

If I’m wrong in what I think I wish to know it.. in the meantime I’ll continue thinking that people here should not continues trying to abolish braces but for

Something like that:

1) They should to advertise parents about the discomfort and probably traumatic situation that brace could provoke.
2) They should to advertise parents, that seems to be contradictory or not so much convincing studies about the high or low effectiveness of braces to avoid surgery.. and at least many of them not clearly says if they were used in the right way or not.. something that seems to not be clear what means for all.
3) They should to say parents that for everyone with a minimal rational mind and knowledge about physics laws and a basic knowledge about what scoliosis is, braces seems to be something so much important in an effective non surgical treatment trying to avoid surgery, if they are used under the right conditions.
4) They should to say parents that for everyone with a minimal rational mind and knowledge about physics laws and a basic knowledge about what scoliosis is, that the right conditions under which braces should be used are high compliance and reduction in brace and the best should to be combining it with other methods.
5) They should to advertise parents that surgeons seems to not include those conditions in the protocol and they are not giving any logic reason for that, except perhaps, what they may conclude assuming as a fact what they could have read in some of that studies, so is logic to suppose that the best would be to be sure that those conditions will be satisfied before beginning to use it.
6) They should to explain parents how they can have a good idea about that by themselves, if they measure the flexibility, that is, the lenght difference between being stand up and lying down.
7) They should to say parents about non surgical methods to gain flexibility if it is not enough.
8) They should to advertise parents that are not evidence of something good until end of life with fusion.
9) They should to advertise parents that there are absolute guarantees of bad and irreversible effects with fusion (it seems to not be any interest in reversing that fact).
10) And then, they should to leave parents to decide what could be the best for their sons, instead of eliminating options for them.

Thanks for hear me.

[rohrer01]

As I said you many times before, you will never understand what I said here, which was my purpose and it have not any sense we continues talking at least in this thread. But anyway as you insist I must to say that in this thread I was not questioning the OFFICIAL (traditional is better?) Western Medicine COMUNITY (you forgot 2 words). If you have read the large thread I quoted you, it should to be really clear for you at least what I think it is.. and certainly the ‘definition’ I gave you of the OWMC in this thread should be enough to understand what I was saying and why I opened this thread, but again, you will never understand it and even if would have time to try it, I’m not able to explain you in a way different of all I explained you before.
You may believe I’m waiting for demands to be met if you want. Certainly for me is now mainly a brace thread. So I will talk about braces, ok?

First of all, you are questioning my intelligence by stating that I will never understand... What you are saying here in your thread is not consistent. You want people (Sharon) to quit insisting that the "Official Western Medicine Community" is the only option... It is a straight forward question to ask WHO the "Official Western Medicine Community" is. Define it an state what you are comparing it to. Alternative therapy is too vague of a term because many "alternative" therapies are within the "Official Western Medicine Community". I have read the whole thread. You admitted NOT reading posts before answering. If you don't believe me then go back and re-read your own thread. It is NOT my belief that you are making demands. This is what YOU said:

If you believe something as Pooka1 is suggesting that I don’t want to talk about that because I want to promote that some alternatives methods really works although not worked for me or something like that, I have nothing to talk with you any more, as I have not with her. It not imply I will not continue demanding what I’m demanding in this thread, where I will not talk about nothing not having to do with my demand, and of course what I believe or not about alternative treatments my knowledge or experiences with them and so on has absolutely nothing to do. This remember me the dark times of my country when people denounced of doing atrocities never was investigated, but yes who did the denouncement (in fact tortured and killed).

Now you claim that this thread is about bracing? You have said several times that you have nothing to talk with me anymore. Your reason? Is it because I keep steering your thread back to the original topic that you now seem to be avoiding? Is bracing the "alternative" treatment that you are angry about being denounced? If so, would it have not been so much easier to state that from the beginning? Oops, bracing is accepted in the "Official Western Medicine Community", notice I didn't leave out any words. I'm still waiting for you to clarify your demands (besides the one where you want Sharon to redact her statement) and clarify what the "Official Western Medicine Community" means to you. If you can't do that, this whole thread is pointless.

bold mine

[flerc]

Something like that:

1) They should to advertise parents about the discomfort and probably traumatic situation that brace could provoke.
2) They should to advertise parents, that seems to be contradictory or not so much convincing studies about the high or low effectiveness of braces to avoid surgery.. and at least many of them not clearly says if they were used in the right way or not.. something that seems to not be clear what means for all.
3) They should to say parents that for everyone with a minimal rational mind and knowledge about physics laws and a basic knowledge about what scoliosis is, braces seems to be something so much important in an effective non surgical treatment trying to avoid surgery, if they are used under the right conditions.
4) They should to say parents that for everyone with a minimal rational mind and knowledge about physics laws and a basic knowledge about what scoliosis is, that the right conditions under which braces should be used are high compliance and reduction in brace and the best should to be combining it with other methods.
5) They should to advertise parents that surgeons seems to not include those conditions in the protocol and they are not giving any logic reason for that, except perhaps, what they may conclude assuming as a fact what they could have read in some of that studies, so is logic to suppose that the best would be to be sure that those conditions will be satisfied before beginning to use it.
6) They should to explain parents how they can have a good idea about that by themselves, if they measure the flexibility, that is, the lenght difference between being stand up and lying down.
7) They should to say parents about non surgical methods to gain flexibility if it is not enough.
8) They should to advertise parents that are not evidence of something good until end of life with fusion.
9) They should to advertise parents that there are absolute guarantees of bad and irreversible effects with fusion (it seems to not be any interest in reversing that fact).
10) And then, they should to leave parents to decide what could be the best for their sons, instead of eliminating options for them.

Certainly I should to update this.. probably in that way..

11) They should to advertise parents, that negatives factors of (rigid) braces as muscular weakeness seems to be a fact .
12) They should to advertise parents, that probably is inevitable with current braces some deformation of the rib cage.
13) They should to advertise parents, that probably with current braces is inevitable an increase of the curve, so a follow up is absolutely necessary and if this is the case, surely the best would be remove it inmediately.
14) They should to advertise parents, that traumatic situations, bad emotions may turn worst the situation.

[Pooka1]

I absolutely respect your point of view, but I don’t agree brace even avoiding surgery is worse than fusion.

Maybe you don't agree because you don't have to wear the brace. Just spit-balling here.

But since brace is only for some years, I don`t believe many parents may decide for fusion.

This makes no sense. Deciding not to brace does NOT mean choosing fusion. That would only make sense if braces were guaranteed to work which they are NOT.

Deciding not to brace means acknowledging that the evidence just isn't there to justify the effort. That's not to say a child could not still choose to brace after being informed of the evidence case. But I seriously doubt many kids who were told about the situation would wear a 23 hour/day hard brace for years.

[Pooka1]

As regards BrAIST, I do not know how they will get much compliance. The kids KNOW that half will be given no brace and they would not do that if the treatment was effective. If the treatment was effective, everyone would be getting a brace. It just seems like such a hard study to do.

[flerc]

Maybe you don't agree because you don't have to wear the brace. Just spit-balling here.

Or maybe you don't agree because you have not a great percentaje of vertebras fixed for ever or you never was facing that possibility. Just spit-balling here? Now I agree.

This makes no sense. Deciding not to brace does NOT mean choosing fusion. That would only make sense if braces were guaranteed to work which they are NOT.

I was refering I don't believe parent may decides (if they might) as the less evil, fusion than brace, of course assuming brace will avoid surgery.

Deciding not to brace means acknowledging that the evidence just isn't there to justify the effort. That's not to say a child could not still choose to brace after being informed of the evidence case. But I seriously doubt many kids who were told about the situation would wear a 23 hour/day hard brace for years.

Do you want to say something as 'not found an evidence'?.. really different to say 'there is no evidence'.
In this case I cannot say I not agree at all with all you said.

[mariaf]

Also if you were sure that in this way she/he may avoid fusion?

The operative word here is MAY avoid fusion.

But nobody seems to know what the odds are on that being the case - or not.

[Pooka1]

Or maybe you don't agree because you have not a great percentaje of vertebras fixed for ever or you never was facing that possibility. Just spit-balling here? Now I agree.

What is the evidence a fusion can be avoided by bracing? It is therefore irrelevant whether I know or don't know what that is like. All I can do is accept reality. Just because we want there to be an effective treatment to avoid fusion does't magic it into existence.

[mariaf]

[QUOTE=Pooka1;147859]I also would NEVER put my child in a Milwaukee brace even with a guarantee of avoiding fusion for life. Life is very short. /QUOTE]

Life is very short indeed - and for a child who is braced all during childhood (as would have been the case for my son without VBS) they don't get any do-overs.

Kids only get one childhood.

For many children, adolescents and their parents, spending one's childhood in a brace in the hopes it MAY avoid surgery just isn't worth it.