Had my daughter not been fused...

[Pooka1]

Sharon
I am curious as to whether your daughter has finished growing, as many girls have by age 14. If not how much has she grown since her surgery?
Ramona

At her ~8 month check up, the surgeon said she was done growing. He said something about closed growth plates. I don't know which growth plates. We know the different bone indices can differ wildly in some cases.

I can't say if she has grown since surgery or not... both my girls are about 5' 9" now. Her sister may be taller as she is not done growing per the last radiograph w/ Risser this spring. I look up to them... literally.

[titaniumed]

Sharon
Better a late post than never,

It sure sounds like Weiss is a confident individual. Overconfidence can produce mistakes and there are a few mistakes with that statement for sure. Frank Zappa wrote a song called "flakes" years ago, It was a great song.....not overly commercial, I might point out.LOL Growing up in a musical family drove me to listen to all types of music......

It just goes to show that decision making really needs the "whole picture" brought to view. That whole picture can be realized by reading a few books, reading on this forum, researching on the internet, and talking to a few scoliosis trained surgeons. Only after this is done, can one make an educated decision on treatment.

Its like saying that the Golden Gate bridge needs paint for cosmetic reasons only, and when a section of it falls due to rust and lack of inspection by multiple qualified personal, do you realize that that was wrong.

Unfortunately, it takes some effort to grasp that whole picture but at least that info is readily available now. The "dark ages" have past, the days when there were limited resources.

Now its the research that's work!!! You did the work. I never thought of having scoliosis as being work per say. Its an affliction, a tribulation, a misfortune that we learn to adapt to in time... and it takes time, the rest of our lives.... surgery or not.

Scoli kids(future surgical candidates) need to ponder the surgical decision. I did many years ago, and its scary and unknown territory at those young ages. I think back now about those days and I think that not knowing what I know now led me to back away from surgery back in 1974. For a child, scoliosis is an overwhelming topic that needs understanding and acceptance on a personal level and at their own speed.

Scoli kids also need parents that can understand what it is that we go through.Going through high school with all the competitiveness, peer pressure, academics, girls, boys, parties, football, yes I played,thoughts of college can really be overwhelming at times. Trying to absorb all of this leaves little time for surgical research and that's where good parents come in.

Surgical decision for some, 2 months. For me, it took 34 years. 2 months sounds awfully fast doesn't it? Maybe its me, I like to think about things for a while.

Your daughters will thank you for being a good parent.... if they don't, they will, in time......You said they were only 14 right?
Ed

[Pooka1]

Sharon
Better a late post than never,

It sure sounds like Weiss is a confident individual. Overconfidence can produce mistakes and there are a few mistakes with that statement for sure. Frank Zappa wrote a song called "flakes" years ago, It was a great song.....not overly commercial, I might point out.LOL Growing up in a musical family drove me to listen to all types of music......

It just goes to show that decision making really needs the "whole picture" brought to view. That whole picture can be realized by reading a few books, reading on this forum, researching on the internet, and talking to a few scoliosis trained surgeons. Only after this is done, can one make an educated decision on treatment.

Its like saying that the Golden Gate bridge needs paint for cosmetic reasons only, and when a section of it falls due to rust and lack of inspection by multiple qualified personal, do you realize that that was wrong.

That's a great analogy for many folks. For us, the time frame was much more compressed and the answer was far more obvious.

Unfortunately, it takes some effort to grasp that whole picture but at least that info is readily available now. The "dark ages" have past, the days when there were limited resources.

This is an important point. I think it was the right decision to avoid surgery with the older instrumentation. I suppose people with rapid, relentless curves either had no choice but to try with those techniques or avoid it and end up with high triple digit curves. I realize how lucky we are that my daughter was diagnosed at a time when there are surgical techniques that work.

Now its the research that's work!!! You did the work. I never thought of having scoliosis as being work per say. Its an affliction, a tribulation, a misfortune that we learn to adapt to in time... and it takes time, the rest of our lives.... surgery or not.

That's another good analogy. I am hopeful our surgeon is correct about my daughter being back in the population on future back issues. We will see.

Scoli kids(future surgical candidates) need to ponder the surgical decision. I did many years ago, and its scary and unknown territory at those young ages. I think back now about those days and I think that not knowing what I know now led me to back away from surgery back in 1974. For a child, scoliosis is an overwhelming topic that needs understanding and acceptance on a personal level and at their own speed.

It is arguable that folks diagnosed when you were made the right decision to delay surgery. I think Gerry's mother made the right decision for her. She was lucky to not have a curve like my daughter's curve though.

Scoli kids also need parents that can understand what it is that we go through.Going through high school with all the competitiveness, peer pressure, academics, girls, boys, parties, football, yes I played,thoughts of college can really be overwhelming at times. Trying to absorb all of this leaves little time for surgical research and that's where good parents come in.

The issues are numerous and complex. Getting a handle on the state of the literature is the biggest thing. It took me a few years to get a sense of the literature in my research field. And then I had to keep up with it! I haven't spent nearly that much time on scoliosis articles and may be missing some things that I should consider but I think I have most of the relevant paradigms down.

Surgical decision for some, 2 months. For me, it took 34 years. 2 months sounds awfully fast doesn't it? Maybe its me, I like to think about things for a while.

Actually, we decided immediately. There was no pondering period. I had two surgeons telling me she needed surgery very soon. I could see for myself that she was twisting up into a pretzel almost in real time. The surgeons didn't elaborate on why she needed surgery soon but I think they knew that when a curve moves that fast and is never stable, surgery is the only option. I have since crunched her curvature rates and compared them to some other testimonials. That's why I think they both said surgery soon. The one who just started bracing didn't even try to brace her.

Your daughters will thank you for being a good parent.... if they don't, they will, in time......You said they were only 14 right?
Ed

Yes they are 14 but will be 15 this fall.

Ideally they should understand the issues and make their own decisions. For my fused daughter, there was no option so no analysis required.

For my fused daughter, I have given her the synopsis on the literature and discussed strategies for brace wear. I have shared with her the data on stability versus brace wear. Then I dropped it. She finally understood the issue and stopped wearing the brace.

Information is imperfect. All we can do is try to make sense.

sharon

[Pooka1]

Unfortunately, it takes some effort to grasp that whole picture but at least that info is readily available now. The "dark ages" have past, the days when there were limited resources.

I think someone needs to send a telegram to Weiss that we are no longer in the dark ages. That paper I quoted from was published in 2008. He sounds like an idiot.

I am guessing that is a non-peer-reviewed journal.

[Ballet Mom]

Given that, there is no reason to expect her 58* curve would have stabilized for any length of time given that it moved 10* in the previous 2 months.

Sharon,

I don't know the background of your daughters, was your fused daughter diagnosed at 48 degrees? Because if so, the bracing is much less likely to be effective at that point and is already to the surgical point and I can certainly understand why doctors wouldn't have braced her at that point considering the rapid progression.

However, and I'm really trying to understand your thought process here as it applies to other scoliosis patients, my daughter sounds very much like your daughters. She has also been checked out for Marfan's and has been told by the geneticist at a major children's hospital that she would be given a diagnosis of Hypermobility Syndrome IF she ever developed any pain associated with it. Until that time, she is simply hypermobile due to her hyperextended joints. And she can very easily place her hands on the ground with room to spare, unlike your daughter.

My daughter also progressed ten degrees in less than two months and using your assumptions, she would also be over a hundred degrees by the end of her growth and yet her curve was stopped in its tracks by utilizing the Charleston brace. I also was able to see my daughter deforming in front of my eyes in the last month before she got her brace. How would an orthopedic surgeon, at this point in time, know whether bracing would work or not without trying it?

I'm not debating that the bracing may not have worked in your daughter's cases, obviously these cases can move extremely rapidly. I am simply questioning whether your assumptions as it relates to the rest of the scoliosis population are actually valid.

[titaniumed]

We live in a progressive world. People that do not advocate progress will be limited in the future. I think that some of us, as we age will exhaust our interests and fatigue..... Sounds like he might be there. Its natural. There is also the anti surgical factor of the older generation coming to play here.

I had the difficult decision of weighing the older more experienced surgeon with thousands of surgeries under his belt or, the younger freshly trained in new techniques type of surgeon with plenty of spark. I chose the latter. Of course I had plenty of time to think about this and I'm lucky to have had that time. My twin 50s at age 16 held for years and agree with Linda that curve progression is not linear. There are periods of rapid curve progression that can happen very quickly. Like wildfire sometimes. If its unpredictable, then its logical to expect the worst and prepare the fire hoses.

Its this kind of situation especially in a child that makes it so difficult. The psychological ramifications are overwhelming. I basically learned to block out any negativities within my mind, and forge on. "Damn the torpedoes" I learned while at school at Farragut. It was my military mindset that I used for this.......

Anyone remember the Civil War? I do. Everyday of my life.
Ed

[Qikdraw]

Sharon,

I'm really happy you talk with your girls about this stuff, give them as much info as you can, and allow them to make decisions. During the run up to my surgery my parents were making all the decisions and not talking to me about it at all. My mother said that I was not my normal happy self, that I was withdrawn and clearly something was up, although my parents didn't know what was wrong. Finally one day my parents were talking about the surgery and I happened to walk by and blew up at them. (which in my parents home is shocking, and I am still amazed I did that) They were talking about MY life without including me in the discussion, yes I was 12, but that doesn't mean I should have been ignored. So my parents sat me down and explained what was going on, the risks involved, the recovery, the year out of school, the whole bit. After that I was back to being my normal happy self. All I wanted was information and to be a part of my own treatment.

So mucho props to you Sharon for actually discussing things with your girls.

As for me I am glad I did the surgery cause I would be dead 15-20 years ago. My progression was so bad they couldn't wait until after puberty, which was their original intent. (I need to see if I can get copies of my old xrays, if they are still around, it was a while ago. lol)

Brad

[Pooka1]

Sharon,

I don't know the background of your daughters, was your fused daughter diagnosed at 48 degrees? Because if so, the bracing is much less likely to be effective at that point and is already to the surgical point and I can certainly understand why doctors wouldn't have braced her at that point considering the rapid progression.

She was diagnosed at ~27 if I recall correctly. Not too far off that number anyway.

However, and I'm really trying to understand your thought process here as it applies to other scoliosis patients, my daughter sounds very much like your daughters. She has also been checked out for Marfan's and has been told by the geneticist at a major children's hospital that she would be given a diagnosis of Hypermobility Syndrome IF she ever developed any pain associated with it. Until that time, she is simply hypermobile due to her hyperextended joints. And she can very easily place her hands on the ground with room to spare, unlike your daughter.

My braced daughter has a diagnosis of Hypermobility syndrome although she can't do the hallmark extensions. (I can lay my hands flat on the ground but I don't meet any other criteria.) I asked why not a diagnosis of Marfan's habitus and the answer was that the geneticist didn't think it had a code. (!)

ETA: My fused daughter "failed" too many tests for Hypermobility syndrome and has no diagnosis. They are identical... I strongly suspect what one has or doesn't have, the other has or doesn't have. And I don't get how my braced daughter was diagnosed with it since she can't even come close to doing the hallmark extensions.

My daughter also progressed ten degrees in less than two months and using your assumptions, she would also be over a hundred degrees by the end of her growth and yet her curve was stopped in its tracks by utilizing the Charleston brace. I also was able to see my daughter deforming in front of my eyes in the last month before she got her brace. How would an orthopedic surgeon, at this point in time, know whether bracing would work or not without trying it?

1. Did your daughter have any documented stable periods or periods where the curve moved much slower?

2. You can't know that the brace stopped the curve until she comes out of it.

In re how a surgeon would know if it would work or not, I don't know. I just know some rightly claim there is no robust evidence bracing works.

In re my daughter, I am guessing that they knew that cases that never were stable and(or) moved at or above a particular rate are known to not be held by a brace. But I don't know that. All I can do is report what the two surgeons said and did (or didn't do).

I'm not debating that the bracing may not have worked in your daughter's cases, obviously these cases can move extremely rapidly. I am simply questioning whether your assumptions as it relates to the rest of the scoliosis population are actually valid.

All I can do is report what happened and didn't happen with the two surgeons and my daughter. I have tried to be clear when I'm guessing the reasons why they did and didn't do various things. There is some reason neither surgeon braced her. Maybe it is different reasons for each guy, I don't know. And the second guy did brace my other daughter so the reason isn't because he doesn't brace.

[Pooka1]

Sharon,

I'm really happy you talk with your girls about this stuff, give them as much info as you can, and allow them to make decisions. During the run up to my surgery my parents were making all the decisions and not talking to me about it at all. My mother said that I was not my normal happy self, that I was withdrawn and clearly something was up, although my parents didn't know what was wrong. Finally one day my parents were talking about the surgery and I happened to walk by and blew up at them. (which in my parents home is shocking, and I am still amazed I did that) They were talking about MY life without including me in the discussion, yes I was 12, but that doesn't mean I should have been ignored. So my parents sat me down and explained what was going on, the risks involved, the recovery, the year out of school, the whole bit. After that I was back to being my normal happy self. All I wanted was information and to be a part of my own treatment.

Wow that is incredible to read, Brad. I agree it would have been easier on you to be included but I can also see your parent's wanting to spare you any fear.

My kids were diagnosed at 12 like you and were old enough to be included quite a bit. They have years of science and me asking them to make logical arguments under their belts so I think they had a sort of leg up on trying to see these points. Not sure how much they got then but they get most of it now. All I ask is that they think independently and not just believe me. I could be wrong. Now that they are 14.5 yo, all this independent thinking backfires occasionally () but so far, so good.

So mucho props to you Sharon for actually discussing things with your girls.

Thanks. This is my first parenting gig and I'm winging it. I happened to hit this one right I think.

As for me I am glad I did the surgery cause I would be dead 15-20 years ago. My progression was so bad they couldn't wait until after puberty, which was their original intent. (I need to see if I can get copies of my old xrays, if they are still around, it was a while ago. lol)

Yeah I think that's the point... people like Weiss ignore the rapidly progressing kids in his massively logical and up-to-date "arguments."

[titaniumed]

This should be a new thread in an adult area, but a good question would be,

How much info should be conveyed, and at what age?

There is a big difference in maturity levels from age 12 to 15. Also boys and girls differ greatly during those periods.

My parents conveyed all their input for 1974, but the Docs will contribute on a minimal level, especially when young.

There is also a big difference between mandatory surgeries like Brads and myself where weighing the odds and deciding is elective.

Maybe it was a good thing I didn't know too much back then........

Ed

[Pooka1]

This should be a new thread in an adult area, but a good question would be,

How much info should be conveyed, and at what age?

I agree that would be a good thread. I'd like to hear others' opinions on it.

There is a big difference in maturity levels from age 12 to 15. Also boys and girls differ greatly during those periods.

"Girls are good and boys are bad, naughty babies." -- Angelica Pickles, Rugrats

My parents conveyed all their input for 1974, but the Docs will contribute on a minimal level, especially when young.

That's great that your parents kept you in teh loop as much as possible. I think that's the way to go.

There is also a big difference between mandatory surgeries like Brads and myself where weighing the odds and deciding is elective.

This will be included in the Weiss telegram. He doesn't seem to be aware of it.

Maybe it was a good thing I didn't know too much back then........

Ed

Nah. Knowledge is power.

[Pooka1]

Our buddy Weiss

ps. Is Weiss a board-certified orthopedic surgeon?

Anyone know?

[Qikdraw]

Wow that is incredible to read, Brad. I agree it would have been easier on you to be included but I can also see your parent's wanting to spare you any fear.

Actually it was the fear of not knowing that set me out of sorts. But Thats the risk of parents in what do you tell your children, specially when they need surgery.

My kids were diagnosed at 12 like you and were old enough to be included quite a bit.

Actually I was diagnosed a few months after birth with problems. My mother had worked with children with disabilities before and knew something was not right. She had to convince the doctors to do some looking. When they found out my spine was deformed and not one vertebrae were the same, they started telling my mom all kinds of things. Stuff like I would be severely mentally handicapped, I would never speak, I would never walk, all kinds of really wacked out stuff. My poor mother.

They have years of science and me asking them to make logical arguments under their belts so I think they had a sort of leg up on trying to see these points. Not sure how much they got then but they get most of it now. All I ask is that they think independently and not just believe me. I could be wrong. Now that they are 14.5 yo, all this independent thinking backfires occasionally () but so far, so good.

LOL Yeah, it backfired on my parents a bit, but my parents were smart enough to let us fail on our own, but to help us back up. They always have been supportive that way.

Thanks. This is my first parenting gig and I'm winging it. I happened to hit this one right I think.

I do not envy you the whole 'boys' bit. Being a guy I kinda know how much testosterone is coursing through our veins at a young age, I do not envy parents of young women with guys drooling at them.

Yeah I think that's the point... people like Weiss ignore the rapidly progressing kids in his massively logical and up-to-date "arguments."

I think thats the problem of anyone with something to sell. They do not take the whole arguement, not even to say that surgery is needed at times. Thats just silly. For some people the issue with scoliosis isn't with the curve, but with pain, and if exercises get rid of the pain, then that is your solution, but for me it wasn't pain I was in, I was just rapidly curving over, and was running out of breath quickly, so it was surgery for me. I fully believe that each case is unique and what works for one may not work for another.

Brad

[Qikdraw]

This should be a new thread in an adult area, but a good question would be,

How much info should be conveyed, and at what age?

There is a big difference in maturity levels from age 12 to 15. Also boys and girls differ greatly during those periods.

I don't think it has anything to do with age really, but individual maturity. Each child matures at different rates. I think I matured early because of dealing with my scoliosis for my whole life, I was ready to sit down and discuss things with my parents about surgery. Some 12 year old children aren't capable of dealing with it, specially if they haven't been dealing with scoliosis that long. Its a bit of a shock to all of a sudden have issues you never really had before.

For me a messed up back 'was' normal and if I didn't start having to deal with scoliosis until age 12 my life would be comepletely different, so would my maturity level.

So in general terms I suppose you're right in maturity ages for children, but for people dealing with their children should probably take them on a case by case basis.

Just my humble opinion.

Brad

[Pooka1]

(snip excellent points)

I think thats the problem of anyone with something to sell. They do not take the whole arguement, not even to say that surgery is needed at times. Thats just silly. For some people the issue with scoliosis isn't with the curve, but with pain, and if exercises get rid of the pain, then that is your solution, but for me it wasn't pain I was in, I was just rapidly curving over, and was running out of breath quickly, so it was surgery for me. I fully believe that each case is unique and what works for one may not work for another.

Brad

Yes exactly. I think Weiss could choose to be entirely credible if he wasn't up to his neck in trying to push Schroth and the Cheneau brace. We already know that most cases do not progress to surgery territory. So that "landmark" article should SPECIFICALLY be discussing the relatively few cases that do progress and if they can be stopped in time to avoid surgery. And he has to do it in a data-rich format.

We don't get that.

Instead we get Weiss discussing decades old references like they were hot off the presses. We get no clear understanding from him how many of the kids he is bracing and exercising likely would not progress anyway. Yet he will declare victory for the brace and/or exercise. We also get no acknowledgment that at least some of these progressive kids will need surgery despite the bracing and exercise and that is isn't for cosmetic reasons.

I wonder if most other surgeons consider him a quack.