Scoliosis Gym

[Pooka1]

But I wonder what happens with these kids as they mature? What happens if or when they decide to stop using the brace? I could imagine the spine returning over some time....Chances are the majority of the correction has to do with the brace.

The spine will return to where it was assuming successful bracing. Bracing does not correct curves and nobody claims they do. The best hope is that they arrest progression.

The $64,000 question about bracing, even given the BrAIST study, is does it allow some patients who would otherwise need surgery to avoid surgery for life? We can say with some certainly that in many brace cases, because the curve after even "successful" bracing was > 30*, that these patients cannot be assured their efforts let them avoid surgery. Bracing likely only delays surgery for these larger "successful" bracing cases. Recall that in BrAIST, a 49* curve with up to 25% growth remaining was scored as a "success". I think we know for a fact that some of these "successes" will be failures at some point in the not too distant future.

There is a reason they didn't publish the Cobbs for the "successful" curves. And I think it is the same reason one of the authors ignored my direct question about this issue.

[burdle]

The spine will return to where it was assuming successful bracing. Bracing does not correct curves and nobody claims they do. The best hope is that they arrest progression.

The $64,000 question about bracing, even given the BrAIST study, is does it allow some patients who would otherwise need surgery to avoid surgery for life? We can say with some certainly that in many brace cases, because the curve after even "successful" bracing was > 30*, that these patients cannot be assured their efforts let them avoid surgery. Bracing likely only delays surgery for these larger "successful" bracing cases. Recall that in BrAIST, a 49* curve with up to 25% growth remaining was scored as a "success". I think we know for a fact that some of these "successes" will be failures at some point in the not too distant future.

There is a reason they didn't publish the Cobbs for the "successful" curves. And I think it is the same reason one of the authors ignored my direct question about this issue.

Yes - I guess that the aim is to prevent surgery for as long as possible. The downside is that surgery done when you are older is always more difficult and in UK you run the risk of never getting it done at all.

[LindaRacine]

Braces in adolescents are meant to hold the curves, not correct them. While some kids get some permanent correction, the vast majority of braced curves go back to their original level once brace treatment is discontinued.

[titaniumed]

Avoiding spine surgery "for life" is not an easy thing with scoliosis, or at least for those with large curves.... Non-Scoliosis patients also have to worry about spine surgery. Degeneration happens and most likely happens faster with big curves. There might be a study on this.

Bracing delays for the kids, and scolis with large curves as adults, age 50 with 50 Cobb's need to think a little harder about things. Address the pain and ask, can I make it a few more decades with my curves? Discussing these things with a scoliosis surgeon is a good idea not only for the spine, but they look at everything else. They thought I had cancer that's why I say this. My surgeries had to happen at some point, by who, I didn't know, but I was ready to make major changes to make it happen, my life depended on it.

On the subject of Schroth, I found a historical article written by Dr Weiss. This goes back around 100 years to 1921, when Katherina had a steel brace that she wore. A steel brace sounds like torture, so I can see why she put in so much effort into doing something when little was known. She was basically on her own and even with being untrained she deserves a huge pat on the back for her efforts. There are some amazing photos in this article. Weiss talks about studies in later years....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3180431/

I never paid attention to Schroth since years ago, it wasn't around in the US. After trying all sorts of things through the years and submitting to surgery, alternatives become a thing of the past for elder fusion patients. I don't have an exercise ball anymore.....I had one most of my life. My stretching chair and arch table are gone now....Looking at the historical photos brings back memories of my un-fused life.

Ed

[Pooka1]

Avoiding spine surgery "for life" is not an easy thing with scoliosis, or at least for those with large curves....

That's why BrAIST and other studies where probably the majority of patients ended up with a curve> 30* and in some cases much larger than 30* are giving people false hope in my opinion. Kids are motivated to wear a brace because they think it will let them avoid surgery for life. No wonder some show up in orthopedic offices years later mad as hell when they need surgery.

She was basically on her own and even with being untrained she deserves a huge pat on the back for her efforts.

I think of all money wasted and all the dashed hopes of people who pay through the nose for Schroth. That is a scandal and I don't see her as doing anyone any favors through her efforts. I don't think she intended this but that is what happened. If trained researcher with ~30,000 people over ~10 years couldn't show it worked then people need to know that.

[burdle]

Braces in adolescents are meant to hold the curves, not correct them. While some kids get some permanent correction, the vast majority of braced curves go back to their original level once brace treatment is discontinued.

Its the level the curve progresses to when bracing is stopped that is the issue.

[burdle]

Avoiding spine surgery "for life" is not an easy thing with scoliosis, or at least for those with large curves.... Non-Scoliosis patients also have to worry about spine surgery. Degeneration happens and most likely happens faster with big curves. There might be a study on this.

Bracing delays for the kids, and scolis with large curves as adults, age 50 with 50 Cobb's need to think a little harder about things. Address the pain and ask, can I make it a few more decades with my curves? Discussing these things with a scoliosis surgeon is a good idea not only for the spine, but they look at everything else. They thought I had cancer that's why I say this. My surgeries had to happen at some point, by who, I didn't know, but I was ready to make major changes to make it happen, my life depended on it.

On the subject of Schroth, I found a historical article written by Dr Weiss. This goes back around 100 years to 1921, when Katherina had a steel brace that she wore. A steel brace sounds like torture, so I can see why she put in so much effort into doing something when little was known. She was basically on her own and even with being untrained she deserves a huge pat on the back for her efforts. There are some amazing photos in this article. Weiss talks about studies in later years....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3180431/

I never paid attention to Schroth since years ago, it wasn't around in the US. After trying all sorts of things through the years and submitting to surgery, alternatives become a thing of the past for elder fusion patients. I don't have an exercise ball anymore.....I had one most of my life. My stretching chair and arch table are gone now....Looking at the historical photos brings back memories of my un-fused life.

Ed

Once you get to your 50s surgeons are less keen to do surgery. They prefer to try to address the pain without surgical intervention.

[LindaRacine]

Once you get to your 50s surgeons are less keen to do surgery. They prefer to try to address the pain without surgical intervention.

That makes absolutely no sense.

[titaniumed]

That's why BrAIST and other studies where probably the majority of patients ended up with a curve> 30* and in some cases much larger than 30* are giving people false hope in my opinion. Kids are motivated to wear a brace because they think it will let them avoid surgery for life. No wonder some show up in orthopedic offices years later mad as hell when they need surgery.



I think of all money wasted and all the dashed hopes of people who pay through the nose for Schroth. That is a scandal and I don't see her as doing anyone any favors through her efforts. I don't think she intended this but that is what happened. If trained researcher with ~30,000 people over ~10 years couldn't show it worked then people need to know that.

False hope no matter who does it, is just wrong, and it doesn't matter what its about....

"It is always better to have no ideas than false ones, to believe nothing, than to believe what is wrong" Thomas Jefferson

With Katherina Schroth's situation at the end of WW1, Germany was destroyed and defeated. On top of that, the influenza (Flu) pandemic took a foothold and killed millions all over the world. Having scoliosis wearing a metal brace during that time period, was a triple whammy. I don't think that during that period, there was much interest and knowledge with scoliosis, she basically was on her own. People became survivalists....Her original intent was to help with the disease no matter what it took.

Scoliosis is never cheap, that's for sure. I don't know what she charged back in the old days for her help, I believe that it was reasonable if someone had the money. Plenty of people were broke after the war, I would bet that most of her original scoliosis patients didn't pay at all...and she had a heart of gold.

Now, after some time, the business model is established, and lemonade prices rise beyond 10 cents......Corporate GREED always takes over! You know, Dr Evil....(See attachment below) I have a feeling there is a business textbook in circulation with a chapter on Dr Evil business tactics....

BTW, in England, its Mr Evil. (Scoliosis forum humor)

Ed

[Pooka1]

False hope no matter who does it, is just wrong, and it doesn't matter what its about....

"It is always better to have no ideas than false ones, to believe nothing, than to believe what is wrong" Thomas Jefferson

Excellent! Didn't know he said that.

BTW, in England, its Mr Evil. (Scoliosis forum humor)

Ed

Perfect!

This post was extremely clever, Ed.

[titaniumed]

Once you get to your 50s surgeons are less keen to do surgery. They prefer to try to address the pain without surgical intervention.

Burdle, You mean in England....Adult scoliosis surgeries can be brutally expensive....more than the cost of therapy depending on age and how complex one is and if there are multiple procedures. They do scoliosis surgeries on elders here in the States. Linda would know, I believe up to the mid 80's. depending on medical condition.

I have said in the past that if I had to do it all over again, age 40 would have been easier. I had 60's at age 40.

For adult scoliosis surgical candidates who skipped fusion in their younger years, (There are many of us) It would be nice if there was a simple rule or formula for decision making. 40:40 meaning age 40, with a 40 degree Cobb might not work since 40 degrees might not be enough to warrant surgery. 50:50 meaning age 50 with a 50 degree Cobb might be too old for some.

45:45 seems better......At age 45, with a 45 degree curve, its time to start thinking about things. Sort of like a gas gage in a car, we start with a full tank and have plenty of time until the yellow low warning light flashes. Then its time to start thinking about gas...

If you are a surgical candidate, and want surgery that you cant get in England, you might consider coming to the US.

Ed

[LindaRacine]

Burdle, You mean in England....Adult scoliosis surgeries can be brutally expensive....more than the cost of therapy depending on age and how complex one is and if there are multiple procedures. They do scoliosis surgeries on elders here in the States. Linda would know, I believe up to the mid 80's. depending on medical condition.

If they didn't do scoliosis surgery on anyone over 49, UCSF would probably have to dump a few surgeons, as there clearly would not be enough work for all of them. Though not routine, I know a dozen or more patients who have undergone long scoliosis fusions at 80yo+. I personally am unsure if that makes sense (long fusions on 80-100 year olds), but people in their 50's and 60's tend to have good outcomes. It's generally believed that's mostly because they have far more to gain in terms of improvement, than those under 50.

[titaniumed]

Having an interest in spine as a scoliosis patient, I cant help not noticing spinal deformities. These sightings generally happen with seniors, and its the huge kyphosis patients that stand out. I usually engage if I have the time, but I saw this woman last month that just stopped me in my tracks it was that bad. It was shocking. Her hump was almost higher than her head and her neck was horizontal. I cant imagine the pain she was in. She was probably beyond surgical help....So I wonder why and how this happened?

In England and Canada, we know that waiting and delaying seems to be part of their logistics. Is this due to a shortage of surgeons, or is this strictly a financial issue? Accountants and insurance people making Dr Evil type medical decisions. If there is an abundance of surgeons in the US without work, perhaps something can be worked out to help out our friends in England or Canada.

Or is this the "false information" that was instilled by (Untrained alternative types) who are usually against surgery? The good ones will belly up, and send the surgical candidates off to be checked out by a scoliosis surgeon. That's the right thing to do. This is why I mentioned adopting the simple surgical decision formula in my prior post. Something like this would have to be reviewed by SRS. A set of numbers, an easier AGE-COBB classification for mandatory referral...

Age and largest Cobb. Both planes. Perhaps a Kyphosis value should be added...???

Something like this.....rough draft. A simple 2 or 3 value deformity system.

Any congenital or early onset regardless of Cobb under age 10, immediate referral

10:30 10Yr old, 30 Degree largest Cobb
15:50 15Yr old, 50 Degree largest Cobb
40:40 40Yr old, 40 Degree largest Cobb (Adult)
50:50 50 Yr old, 50 Degree largest Cobb (Senior value)

Anyone and all radiologists shooting x-rays should report Cobb findings to a database. This should be mandatory.

Anyone who is against surgery has the right to refuse surgery

Dr Boachie set up FOCUS in Ghana to help with deformity. He has spotters looking at kids to try to catch them early.

Here we have people that misinform with false data. Why do we have these extreme cases?

These cases can be avoided.

Ed

[LindaRacine]

Ed...

Not everyone wants surgery, and there are people who have other issues that might keep them from having surgery.

Also, just a warning about approaching people. I had a friend who approached a woman at a party many years ago. She took her aside and said that she noticed the woman had scoliosis, and wanted the woman to know that she (my friend) had surgery for scoliosis as an adult. The woman became very distraught and embarrassed and left the party in tears. Not everyone wants to talk about it, and having people notice that they have a deformity may cause extreme embarrassment. Because of that story, the only place I've ever approached anyone is at scoliosis support events.

--Linda

[titaniumed]

Ed...

Not everyone wants surgery, and there are people who have other issues that might keep them from having surgery.

Also, just a warning about approaching people. I had a friend who approached a woman at a party many years ago. She took her aside and said that she noticed the woman had scoliosis, and wanted the woman to know that she (my friend) had surgery for scoliosis as an adult. The woman became very distraught and embarrassed and left the party in tears. Not everyone wants to talk about it, and having people notice that they have a deformity may cause extreme embarrassment. Because of that story, the only place I've ever approached anyone is at scoliosis support events.

--Linda

This is true. I have a non-blood relative that refuses surgery. When we talk, I let her lead and she has not brought up the subject in a long time. She always asks how I am doing, but we never talk about "her" scoliosis. She doesn't have the major pain. She also doesn't do any therapy at all, but stays quite active. She has an 80 S curve, age 66. She hides it well....Some of us do, and some of us don't.

For engaging people in public, the situation has to be right, and yes, its delicate....and it does take time since it usually comes later in the discussion. Its always a testimonial, always about me, these days its about my neck pain, if that person opens up, then we talk. I have never had any tricky outcomes...I have had husbands want me to talk with their wives.

I will never recommend surgery since I cant make that call, I am not trained to make this decision.

I do recommend being seen by a scoliosis surgeon first for an evaluation. Knowing ones situation is important.

Ed