Originally posted by flerc
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Stop trying to convince that official western medical community is the only option..
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Instead of trying to guess what I was saying recently, why you don't reply what I asked days before or does what you should to do?
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Originally posted by rohrer01 View PostI think we are all hoping that fusion will someday be a thing of the past, like the iron lung. But for "right now" it's what we have for those desperate, in pain, and dying, or those with that looming in their future.
And in re "western medicine", I don't think he is trying to draw a geographical distinction between the west and the east. I think he is trying to draw a distinction between evidence- and science-based approaches ("western") on the one hand and non-evidence-, non-science-, faith-based approaches (alternative "treatments") on the other.
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Originally posted by flerc View PostIt is a confused statement since I’m doing a denounce about something PERVERSE happening here.
What I may believe or not about stapling or tethering (certainly I never objected) or VEPTR, vertebral wedge ostetomies or any other non fusion surgery and others I‘m not sure what are, as Daytona or external fixator, has nothing to do with my denounce here.
I think we are all hoping that fusion will someday be a thing of the past, like the iron lung. But for "right now" it's what we have for those desperate, in pain, and dying, or those with that looming in their future. For those that are able and willing to hold out, there are probably great things waiting in their future.
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Originally posted by hduggerI think the words people are looking for are "effective" and "ineffective".
I have my own views about the FDA as they have 'approved' so many things that later had to be pulled from the market and as with anything to do with the government, I don't necessarily trust that their motives don't have more to do with money than with doing what's right. But these are STRICTLY my personal views and opinions.
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Originally posted by hduggerBasically, fusion surgery and certain braces are standard. Everything else (including VBS, SpineCor, and exercise) are considered experimental.
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Originally posted by rohrer01 View PostSo were they in the 40-45 degree range after tethering or were they in the 20-25 degree range? Either way this is amazing stuff.
With curves that start in the 40's, it is not unusual for these to end up in the teens post-tethering (even before growth, which can bring additional correction).
I think in the case of the larger curves, the patients/parents wanted to try something to avoid fusion, so they are rolling the dice. If I were in that situation, I'm not sure I'd do anything differently than they are.
Sorry if I was unclear by the way.
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Originally posted by rohrer01 View PostI mentioned what I did to Flerc because he has a problem with anyone who promotes Western Medicine as being the only source of help.
What I may believe or not about stapling or tethering (certainly I never objected) or VEPTR, vertebral wedge ostetomies or any other non fusion surgery and others I‘m not sure what are, as Daytona or external fixator, has nothing to do with my denounce here.
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thanks for clarifying that, rohr...
i am sorry for the pain it causes you....
jess
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Originally posted by mariaf View PostRohrer,
Just to make a distinction, with regard to VBS it is definitely true that it is generally done on smaller curves than one would fuse. The cutoff used to be 40, now it's 35 degrees.
However, tethering is a different story. While the last paper I saw on it stated the general cutoff at 55 degrees, I know of a few cases in California where larger curves were tethered (in the 60's). Like VBS, I'm guessing the best results will be on the smaller curves (the ones tethered in the 40's vs. the 60') but time will tell. I believe right now the 2 patients I know of who had tethering for 60-65 degree curves each got an initial correction of about 20-25 degrees with the hope that growth will bring further correction. As I said, only time will tell.
I'm kind of wondering what would happen if a staple or cable broke under the stress of holding these curves for so long. Would the spine progress or would it stabilize due to the fact that bone remodelling would cause the vertebrae to take on a more normal shape? I ask this because rods break under the stress. Staples and cables can't be as strong as rods. I think this would be more of a problem in adults because it takes SO much longer for bone remodelling to take place. But, as you say, 11 years with no problems. Hopefully, it stays that way!
I mentioned what I did to Flerc because he has a problem with anyone who promotes Western Medicine as being the only source of help. He has also indicated a belief that Scoliscore will result in children being operated on at a younger age. With that said, these methods fall pretty much into both categories AND they are surgical.
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Originally posted by jrnyc View Postrohr, i don't understand what "super high deformities" means...
do you mean high up on the spine, like by the neck?
because when i first read the phrase, i thought it meant
"super high" as in "very large"...
??????
jess
It boils down to IF a surgeon has been doing these surgeries for 20 years, s/he will see maybe 10 to 15 cases of a very high thoracic curve with a small percentace of those being lefties. That accounts to NO experience in my book.
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Originally posted by rohrer01 View PostI 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..
Just to make a distinction, with regard to VBS it is definitely true that it is generally done on smaller curves than one would fuse. The cutoff used to be 40, now it's 35 degrees.
However, tethering is a different story. While the last paper I saw on it stated the general cutoff at 55 degrees, I know of a few cases in California where larger curves were tethered (in the 60's). Like VBS, I'm guessing the best results will be on the smaller curves (the ones tethered in the 40's vs. the 60') but time will tell. I believe right now the 2 patients I know of who had tethering for 60-65 degree curves each got an initial correction of about 20-25 degrees with the hope that growth will bring further correction. As I said, only time will tell.
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Originally posted by Pooka1 View PostIf 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.
And I agree with you and Rohrer about why a lot of doctors prescribe bracing - it brings in a lot of money, doesn't expose them to malpractice suits and insurance covers it. It's just EASY for them (and yes that's very sad).
I also wonder how long folks will refer to VBS as 'experimental' - it's been around over a decade now and while I understand we don't know the effects when these kids turn 30 or 40, many have now reached skeletal maturity and what we DO know is that absent VBS, many would have been fused OR had growing rods and we know those can cause problems. In the 11+ years that VBS has been in existence there have been no adverse effects thus far so that's the only time frame we can look at.
And I agree with you that while I don't care for the word because I think it's overused, bracing deserves the tag of being 'experimental' if any treatment does.Last edited by mariaf; 02-28-2013, 09:49 PM.
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rohr, i don't understand what "super high deformities" means...
do you mean high up on the spine, like by the neck?
because when i first read the phrase, i thought it meant
"super high" as in "very large"...
??????
jess
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Originally posted by rohrer01 View PostI 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. =(
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.
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Originally posted by rohrer01 View PostI 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. =(
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.
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