Does anyone know anything about this?

[Pooka1]

So, no, I don't have what you think Pooka1's agenda is to lead everyone to the operating table. Even she tried bracing in one of her girls. She became disillusioned with bracing when it did nothing to keep her daughter off of the operating table. I believe that is why she attacks the statistics about the efficacy of bracing long term.

No that is incorrect.

I don't "attack" the stats, I question them from a point of scientific skepticism as everyone who is trained in science would do. I question the stats because the literature in this area of bracing and PT to avoid surgery for life is a train wreck. It is such a train wreck that even someone outside this field can easily find the issues. That is not the case in say my field of science in my opinion. This is not the fault of the surgeons/researchers... the field is much more difficult than in other fields.

I do NOT question bracing because it failed my one daughter. Bracing is known to have a poor track record in certain connective tissue disorders. My daughter has something, hopefully not Marfans but something. So bracing in her case was probably not useful and therefore doesn't inform my opinion of general bracing efficacy.

If only the literature wasn't such train wreck we might advance the ball down the field. But when the gold standard paper declares bracing a success in a child with a 49* curve and up to 25% growth remaining, and then doesn't post the curve measurements at the end of the study, how does that not add to the train wreck? Does anyone believe the cases who ended above 40* aren't likely to need fusion in the future if only due to pain and damage from being out of alignment? Yet they are still "successes". And we have had cases on the forum where bracing appeared to hold the curve to the point of skeletal maturity and then they later needed surgery as adults.

The bracing literature does not, or maybe cannot, address the one issue patients want to know... does bracing (or PT) let them avoid surgery for life. That is why I question these treatments.

[LindaRacine]

Flerc,
I will address a few things in your post.
1. I'm very glad that your daughter is doing well and has moved on with her life without obsessing about her scoliosis. I did the same thing when I turned 18. I was put through so many exercises, traction, electrical stimulation, shoe lifts, etc. I was sick of it all. Whatever your daughter is doing is keeping her stable for seven years with a 50+ degree curve. That is great! I'm sorry to hear that she fell. I have heard that the fused part of the spine is very strong, stronger than the non-fused spine. With that in mind, her back would have probably been fine with her fall unless she hurt the non-fused portion. I am not fused and have been hurt very badly from falls.

2. I'm not familiar with VBt. I've read about VBS and tethering, both of which are for growing youngsters and are still surgery.

3. I have never met Pooka1, therefore I can't call her my "friend" as you say. We disagree on some very major things but still manage to get along quite well. You can agree to disagree and still be nice to people. I don't have what you think is an agenda to lead people to surgery. My agenda is to learn options of treating scoliosis. I learned that there are things that can be done such as VBT and tethering while a child is growing. I never knew that. Had I not come here, I would have never known that. I have learned that in certain cases, PT can help alleviate the pain of scoliosis and help increase breath volume. There are many things I've learned here. Unfortunately, I haven't learned anything that can help my weird and untouchable curve that no one has ever seen before. So, no, I don't have what you think Pooka1's agenda is to lead everyone to the operating table. Even she tried bracing in one of her girls. She became disillusioned with bracing when it did nothing to keep her daughter off of the operating table. I believe that is why she attacks the statistics about the efficacy of bracing long term. But, I do know that if someone I know has a child with scoliosis that I can direct them to less invasive and dangerous techniques as fusion. But fusion is necessary sometimes. I actually got reprimanded on the surgical forum for posting a paper on the complications and mortality rates of fusion. So do you call that a surgical agenda?

4. Maybe in YOUR language "evidence" means proof. In English it does not. If someone were to tell me that there was evidence that my loved one is dead, I would not accept that as proof especially if they were on life-support. The doctor would have to show me evidence that there was absolutely no brain activity and they could not breathe on their own to prove to me they are dead. Of course, if they were cold, blue, stiff, and not breathing and had no heartbeat, that would be enough evidence to show me they were dead. There is still evidence and proof which is fact. There was "evidence" that was accepted for a long time that showed that maggots and flies came from rotting things. Someone challenged that evidence by putting a cloth over a jar of rotting meat where the flies lay their eggs and maggots appeared no, not from the meat but from the flies. That experiment disproved "evidence" that there was spontaneous generation. In mathematics logic is used to prove statements and equations. Example: The water is polluted and green. A=polluted water and B=green water. In this case A==>B but B=\=>A because not all green water is polluted, which is what B to A infers. The evidence is that the green water is polluted which is true in this case but not true in all cases of green water.

5. These arguments are petty and unproductive. They don't help anyone looking for scoliosis help. Your original post was a bunch of chiropractic stuff that they call "Boot Camp". There have been people on here complaining of this treatment. So what has this thread contributed? Nothing but arguing. The "Boot Camp" is discussed in other threads. Please quit picking fights and saying mean things about people, including me. At least you admit your OCD behavior. That is a step in the right direction. Please redirect it in actually doing research and not fighting on forums. Offer what you find and leave it alone, please.

I could not agree more. Thanks for such a thoughtful post.

--Linda

[rohrer01]

No that is incorrect.

I don't "attack" the stats, I question them from a point of scientific skepticism as everyone who is trained in science would do. I question the stats because the literature in this area of bracing and PT to avoid surgery for life is a train wreck. It is such a train wreck that even someone outside this field can easily find the issues. That is not the case in say my field of science in my opinion. This is not the fault of the surgeons/researchers... the field is much more difficult than in other fields.

I do NOT question bracing because it failed my one daughter. Bracing is known to have a poor track record in certain connective tissue disorders. My daughter has something, hopefully not Marfans but something. So bracing in her case was probably not useful and therefore doesn't inform my opinion of general bracing efficacy.

If only the literature wasn't such train wreck we might advance the ball down the field. But when the gold standard paper declares bracing a success in a child with a 49* curve and up to 25% growth remaining, and then doesn't post the curve measurements at the end of the study, how does that not add to the train wreck? Does anyone believe the cases who ended above 40* aren't likely to need fusion in the future if only due to pain and damage from being out of alignment? Yet they are still "successes". And we have had cases on the forum where bracing appeared to hold the curve to the point of skeletal maturity and then they later needed surgery as adults.

The bracing literature does not, or maybe cannot, address the one issue patients want to know... does bracing (or PT) let them avoid surgery for life. That is why I question these treatments.

My apologies. It was an honest mistake to infer that your daughter's bracing failure got you looking at the bracing statistics. To Flerc, this mean "attack" in every line of reasoning that I've seen from him. I made an inference that the failure caused you to look more deeply into this treatment because it sure would have made me look deeper into it.

Regardless of "why" you looked into it, you have found some astounding articles that would probably steer me away from bracing my child. My DIL had a brace failure and she was diagnosed at 12 years old with an 11^o curve and needed spinal fusion at age 16! She isn't hyper mobile to any extent that I have seen. She does have very long thin fingers, though.

[susancook]

Please stop!!!!!!!!!!!!!!!!!!!!!!!!!!!!?

I enjoy the forum because it provides me with helpful strategies for recovery, emotional support from people who "have been there done that", personal accounts of experiences with different therapies, as well as some new treatments/surgical techniques/medical articles concerning treatments.

I have looked at the forum on and off for the past week or so and the "what's new" screen is filled with mostly 2 people countering back and forth on this thread and 2 others, neither person seeming to make any headway. Of the past approx 40 entries, 36 or so deal with constant/incessant long entries that do not appear to ever make any headway. When can you stop this thread AND not start another? Maybe take it off line? Enough! Enough!

Susan

[Pooka1]

I enjoy the forum because it provides me with helpful strategies for recovery, emotional support from people who "have been there done that", personal accounts of experiences with different therapies, as well as some new treatments/surgical techniques/medical articles concerning treatments.

I have looked at the forum on and off for the past week or so and the "what's new" screen is filled with mostly 2 people countering back and forth on this thread and another neither person seeming to make any headway. When can you stop this thread AND not start another? Maybe take it off line? Enough! Enough!

Susan

Susan I completely agree this back and forth is not productive. But that said, I don't see how you can possibly make a case that it is worse than no new posts which is exactly what would have happened absent these exchanges. This forum very VERY slow and would be even slower if the nonsense back and forths ceased. People might conclude it was abandoned given the slow posting rate.

I assume you aren't going to argue there would be more legit posting absent the nonsense. There is no evidence or even reason to support "driving people away" and especially "driving people away who have something real to contribute." It would be good if people who are not contributing would be driven away but nobody has cracked that nut yet. LOL.

[Pooka1]

My apologies. It was an honest mistake to infer that your daughter's bracing failure got you looking at the bracing statistics. To Flerc, this mean "attack" in every line of reasoning that I've seen from him. I made an inference that the failure caused you to look more deeply into this treatment because it sure would have made me look deeper into it.

Regardless of "why" you looked into it, you have found some astounding articles that would probably steer me away from bracing my child. My DIL had a brace failure and she was diagnosed at 12 years old with an 11^o curve and needed spinal fusion at age 16! She isn't hyper mobile to any extent that I have seen. She does have very long thin fingers, though.

No need to apologize!

Concerned Dad credited my posting those papers with taking his daughter out of brace. And indeed her curve held until WELL past skeletal maturity and then moved. She was spared brace treatment and made it to skeletal maturity at a"safe" curve level. That would have been considered a brace failure if she had been wearing the brace but in fact it was not a brace failure since she wan't wearing one! This is how dicey the situation is and how the literature can't be other than a train wreck in my opinion.

Actually as I recall, I started reading the bracing literature when my daughter was first put in one because I wanted to know the fact case. I think I realized it was a train wreck WHILE she was wearing it and BEFORE I knew the outcome of her case. The history of my thinking on this is probably memorialized in the forum so whatever that shows is what went down w.r.t. timing of my thinking about bracing. Maybe I started looking at the bracing literature only after her brace failure as you suggest but I don't think so. That may be went I became more vocal about it but until I found the paper on the refractory nature of Marfans (and perhaps other connective tissue disorders) to brace treatment, I would not have realized that my daughter was not typical and was probably doomed to fail brace treatment.

I have mentioned at least a few times that I think the case for bracing would be somewhat better if they excluded the connective tissue disorder patients. This area of research is rocket surgery when it is hard to exclude certain conditions from brace studies for some reason.

[rohrer01]

I agree that this particular thread should have been closed after the personal attack. But, I have contributed things about myself and logic that some may find useful when they come across absurd statements. I hate the arguing. I guess that's why I quit the forum for nearly a year and find myself sucked back into these threads. I feel I need to defend irrationality. This thread had no integrity from post #1 as it was a repeat of a discussion that had been discussed and argued to death already.

[Pooka1]

Paradoxically, I think both the bracing success rate and bracing failure rate are too high.

The success rate is too high for at least three reasons:

1. point of skeletal maturity is known to be an inadequate time point for declaring success/failure
2. the focus in bracing studies solely on Cobb angle in avoiding fusion as opposed to acknowledging pain from damage from a curve over the years driving people to fusion
3. the gold standard study counts as a success when a child has a 49* curve and up to 25% growth remaining.

The failure rate is too high at least due to the failure to exclude patients who are known to be likely refractory to brace treatment.

How can this not jump the tracks? How can this fail to be a train wreck?

[rohrer01]

No need to apologize!

Concerned Dad credited my posting those papers with taking his daughter out of brace. And indeed her curve held until WELL past skeletal maturity and then moved. She was spared brace treatment and made it to skeletal maturity at a"safe" curve level. That would have been considered a brace failure if she had been wearing the brace but in fact it was not a brace failure since she wan't wearing one! This is how dicey the situation is and how the literature can't be other than a train wreck in my opinion.

Actually as I recall, I started reading the bracing literature when my daughter was first put in one because I wanted to know the fact case. I think I realized it was a train wreck WHILE she was wearing it and BEFORE I knew the outcome of her case. The history of my thinking on this is probably memorialized in the forum so whatever that shows is what went down w.r.t. timing of my thinking about bracing. Maybe I started looking at the bracing literature only after her brace failure as you suggest but I don't think so. That may be went I became more vocal about it but until I found the paper on the refractory nature of Marfans (and perhaps other connective tissue disorders) to brace treatment, I would not have realized that my daughter was not typical and was probably doomed to fail brace treatment.

I have mentioned at least a few times that I think the case for bracing would be somewhat better if they excluded the connective tissue disorder patients. This area of research is rocket surgery when it is hard to exclude certain conditions from brace studies for some reason.

I would have been put in a brace if they had one that would touch my curve. They talked about a Milwaukee brace for me and decided it couldn't get to that area just at the tip of my shoulder blade where the apex of my curve is. I'm ever so thankful, especially since I learned on the forum what a Milwaukee brace was! We didn't have internet back in those days...

I was also diagnosed with AIS when we know now that I have a neuromuscular degenerative disease. I also probably had the curve before age 8 which is about the age I can remember first having back pain. I was also included in the Scoliscore research as AIS, which makes me wonder how many of us are really AIS or some other disease process. That makes Scoliscore unreliable in my book. I was one of its biggest advocates and really, REALLY excited when they came out with it!

[rohrer01]

Paradoxically, I think both the bracing success rate and bracing failure rate are too high.

The success rate is too high for at least three reasons:

1. point of skeletal maturity is known to be an inadequate time point for declaring success/failure
2. the focus in bracing studies solely on Cobb angle in avoiding fusion as opposed to acknowledging pain from damage from a curve over the years driving people to fusion
3. the gold standard study counts as a success when a child has a 49* curve and up to 25% growth remaining.

The failure rate is too high at least due to the failure to exclude patients who are known to be likely refractory to brace treatment.

How can this not jump the tracks? How can this fail to be a train wreck?

Back in the day, 40^o was considered the trigger level for spinal fusion. I was diagnosed with 39^o and had records saying 37^o but they were always taken laying down...??? That was at a scoliosis treatment program at Phoenix Children's Hospital. That's why I was a surgical candidate then and am not now. It makes no sense. They are too focused on the Cobb angle which tells you NOTHING about rotation or degree of kyphosis. Bracing falls into the same mentality and actually forces hypokyphosis on kids! That's a dangerous thing...

[Pooka1]

Back in the day, 40^o was considered the trigger level for spinal fusion. I was diagnosed with 39^o and had records saying 37^o but they were always taken laying down...??? That was at a scoliosis treatment program at Phoenix Children's Hospital. That's why I was a surgical candidate then and am not now. It makes no sense. They are too focused on the Cobb angle which tells you NOTHING about rotation or degree of kyphosis. Bracing falls into the same mentality and actually forces hypokyphosis on kids! That's a dangerous thing...

Excellent points, Rohrer.

[susancook]

Stop, stop, stop! Enough!

I assume you aren't going to argue there would be more legit posting absent the nonsense. There is no evidence or even reason to support "driving people away" and especially "driving people away who have something real to contribute." L.

This "nonsense" is driving ME away. I need a forum with support, helpful suggestions in dealing with pre and post op issues, and updates on new research on spinal cord surgery. This forum used to fit my needs, so i actively participated. This forum does not currently does not fit my needs. Sad for me and maybe others.

Susan

[Pooka1]

This "nonsense" is driving ME away. I need a forum with support, helpful suggestions in dealing with pre and post op issues, and updates on new research on spinal cord surgery. This forum used to fit my needs, so i actively participated. This forum does not currently does not fit my needs. Sad for me and maybe others.

Susan

Yes but the posts you do want to see aren't magically going to come into existence just because the nonsense stops. So you'll still be out of luck on that score.

[flerc]

4. Maybe in YOUR language "evidence" means proof. In English it does not. If someone were to tell me that there was evidence that my loved one is dead, I would not accept that as proof especially if they were on life-support. The doctor would have to show me evidence that there was absolutely no brain activity and they could not breathe on their own to prove to me they are dead. Of course, if they were cold, blue, stiff, and not breathing and had no heartbeat, that would be enough evidence to show me they were dead. There is still evidence and proof which is fact. There was "evidence" that was accepted for a long time that showed that maggots and flies came from rotting things. Someone challenged that evidence by putting a cloth over a jar of rotting meat where the flies lay their eggs and maggots appeared no, not from the meat but from the flies. That experiment disproved "evidence" that there was spontaneous generation. In mathematics logic is used to prove statements and equations. Example: The water is polluted and green. A=polluted water and B=green water. In this case A==>B but B=\=>A because not all green water is polluted, which is what B to A infers. The evidence is that the green water is polluted which is true in this case but not true in all cases of green water.

I agree is unproductive this discussion but you began it when you said me that I have not a Mathematical thinking because you thought I was using a wrong definition.. a matter of definition, not thinking as I have had to said you. So even I know is unproductive I can ask you why do you believe you may teach me about logic and logic in Maths? Because Pooka1 says I'm a lay in science so I have not a rational mind and then what I say have no sense? I challenge you too to quote an example from my posts if that is the case, if not, stop to talk with me as if I were an ignorant please.

[flerc]

Please quit picking fights and saying mean things about people, including me.

Please don't say me what I should to do or not and certainly you are who are saying mean things about people here, and this show it. Evidence! Or proof, call it as you want, but the worst is that is not true. You are saying I'm picking fights when I'm only defending from attacks.. probably it means the same for you, who knows? And if I'm saying mean things about Pooka1 I can prove it, certainly I can prove it in a judgment! I have more than enough evidence. And what mean thing I said about you? That Pooka1 is your friend? I would be really very much upset if someone would say me this but nobody here could think that it would upset also you.