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

[jrnyc]

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

[mariaf]

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.

Exactly, Sharon.

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.

[mariaf]

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..

Rohrer,

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.

[rohrer01]

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

High up on the spine. In particular "lefties". My surgeon says he sees a curve as high as mine every one or two YEARS. That includes both righties and lefties. Lefties are a whole different monster, as people with leftie curves stand a 40% chance of having a Chiari 1 Malformation, according to a website I read. For those curious, type in Chiari in your search and you will find the website in the thread I started about it.

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.

[rohrer01]

Rohrer,

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.

So 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. I'm all for it. If I have grandkids with scoli, I'd much rather see them get a treatment that will reduce curves like this without fusion.

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.

[jrnyc]

thanks for clarifying that, rohr...
i am sorry for the pain it causes you....

jess

[flerc]

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.

It 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.

[mariaf]

So 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.

The patients who started out with very big curves (in the 60's) initially had their curves reduced by about 20-25 degrees and are now somewhere around 40 degrees following tethering. Of course, the hope is they correct more with growth.

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.

[mariaf]

Basically, fusion surgery and certain braces are standard. Everything else (including VBS, SpineCor, and exercise) are considered experimental.

Then IMHO the standard forms of treatment leave a lot to be desired, maybe even moreso for the JIS crowd.

[mariaf]

I think the words people are looking for are "effective" and "ineffective".

Agreed. I'd be more concerned with the distinction here than, say, whether or not something is FDA approved.

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.

[rohrer01]

It 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.

What does? Is it sweeping generalized statements? It seems to me that the leading technological advances are being made by the western medical community. It has nothing to do with thinking western medicine is better and more to do with money for research. I'm sure if some of the poorer countries had the funding, they would be at the cutting edge. In fact, as I see it, it's not a United States thing, since many European countries seem to be on board with this stuff. Not all studies are done here, grante many are, but a lot goes on in Europe. You can't really call that the "western medical community". I'm guessing that Japan is probably on board with this technology, too. I don't have any evidence of that, but they seem to be very technologically savvy over there. I don't know what's going on in China, since no one ever talks about China. So, if you take the politics out and look at the world as a whole, we seem to all want the same things, right? We want good living conditions, peace, health, security, no? So, if it's the categorically sweeping statements that bother you, then these new and exciting treatments fall into your category. I'd say that phrase "western medical community" is a very categorically sweeping statement, no offense.

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.

[Pooka1]

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.

I think he is objecting to simply stating this despite it being factual/reality. Recall that some people are NOT interested in factual material.

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.

[flerc]

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?

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.

If it is difficult for you to understand the question, let me know.

[rohrer01]

Flerc,
You are the only one who said this: ‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’]

I can't redact what YOU said. And, yes, what you are asking is very confusing since you yourself are the one making the sweeping categorical claims about the "western medical community". You MUST DEFINE what you mean by that before any of this makes sense. You agree to the nonfusion surgeries made by this group and deny the fusion surgery part. Is that what you mean? To me, you have to work with what you have. You can accept or refuse any treatment you wish, but what you can't do is lump treatments into a category and then deny the whole category. What is the other side? Is it Western Medicine vs. Eastern Medicine?

You find me the post where I said EXACTLY what you quoted and I'll delete it. Fair?

[flerc]

Flerc,
You are the only one who said this: ‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’]

I can't redact what YOU said. And, yes, what you are asking is very confusing since you yourself are the one making the sweeping categorical claims about the "western medical community". You MUST DEFINE what you mean by that before any of this makes sense. You agree to the nonfusion surgeries made by this group and deny the fusion surgery part. Is that what you mean? To me, you have to work with what you have. You can accept or refuse any treatment you wish, but what you can't do is lump treatments into a category and then deny the whole category. What is the other side? Is it Western Medicine vs. Eastern Medicine?

You find me the post where I said EXACTLY what you quoted and I'll delete it. Fair?

Do you are replying by Pooka1? ? I said it to her.