seen ORthopedic today :)

[Bigbluefrog]

The Orthopedic was very nice and informative.....we learned so much today...finally have some answers....

They took more radiographs, from the pictures her lower lumbar curve improved from 28.5 degrees to 25 degrees. The Ortho stated that her left leg is same length as right...good news. She is borderline for a brace....he rec waiting 3 months since she improved.

Then get a brace. I feel relieved to have some answers. She is still growing so change can happen.

I feel good that we have been doing those core exercises, it may have helped correct the hips alignment....anyway pictures look better.

ITs not a perfect angle...and so we will continue to do core exercises with balance. I also use an invert back board to help lengthen the back.

I still want to look into PT for her, leaning toward Schroth therapy.

[Ballet Mom]

Hi Bigbluefrog,

I'd love to know how you came up with your handle. Very cute.

I'm sorry to hear that your daughter has been diagnosed with scoliosis along with diabetes. My daughter has been trying to deal with serious acne along with scoliosis....really annoying to have two disfiguring conditions to deal with, especially when she loves ballet and needs to look lovely for it. :eek: It really is hard to deal with two serious medical conditions at the same time.

I just saw your posts and just wanted to suggest that since your daughter is thirteen she could very easily be in a large growth spurt and her curves could be increasing very quickly. It is very odd in my book for these doctors to wait to document progression and have these curves increase than to just do a left hand x-ray and determine if your daughter has significant growth left (did he or she do that x-ray)?. If your daughter is pre-menarchal she would probably have lots of growth left with which the curve can become much worse. I believe that if you are diagnosed with a 25 degree curve you are supposed to be prescribed a brace, not just wait to see if there's progression. There are too many kids on these boards whose curves get much larger because they are told to wait and watch. It is sad to see.

Your daughter is still in the range to be braced with a providence brace and if you wait, she might be out of the range for that. My daughter has been in a Charleston Bending Brace and has been very successful with it, she only wears it at night. And it really hasn't been that much of a problem after she got used to it the first few nights. She even takes it on sleepovers. Perhaps you could get a second opinion with a different doctor, or ask this doctor whether a nighttime brace would be okay for her, or whether he could do a hand x-ray to determine physical maturity. As I tell everyone with a scoliosis diagnosis, time is of the essence.

[Bigbluefrog]

Hi Bigbluefrog,

if your daughter has significant growth left (did he or she do that x-ray)?. If your daughter is pre-menarchal she would probably have lots of growth left with which the curve can become much worse. I believe that if you are diagnosed with a 25 degree curve you are supposed to be prescribed a brace, not just wait to see if there's progression. There are too many kids on these boards whose curves get much larger because they are told to wait and watch. It is sad to see.

As I tell everyone with a scoliosis diagnosis, time is of the essence.
He did do a special xray measurement for growth, basicly she will grow more she hasn't started her menses yet.

I know that it can change suddenly, he stated it could only change a degree a month at most...is that true? followup in Jan.

Something worked...for now, crossing my fingers and praying we made the right decision. Lots of tears and prayers over here.

[Pooka1]

I know that it can change suddenly, he stated it could only change a degree a month at most...is that true? followup in Jan.

No.

My one daughter's curve moved on average 5* a month for at least five months. It was never documented to stop until her surgery of course.

My other daughter has a start and stop curve, both in and out of brace. In other words, the curve was stable in and out of brace and moved in and out of brace. Clearly the brace wasn't working despite the excellent correction in brace.

Ask you surgeon about the evidence case for bracing. Given the issue with the pump, if she were my daughter I wouldn't consider a brace at all. But please ask you surgeon about the evidence in hand for bracing rather than read the various opinions from lay folks on this site.

Also you might consider vertebral body stapling in lieu of bracing.

Good luck.

[Ballet Mom]

I'm very happy to hear that your doctor actually performed an x-ray to determine if your daughter still has growth to occur. It sounds like your daughter is under the care of a good ortho. Did the doctor explain how to manage the diabetes with a scoliosis brace, or does it come down to not being able to use the insulin pump? You are facing some tough choices. I feel for you.

Yes, scoliosis curves can progress much faster than one degree a month during the adolescent growth spurt. I have heard of many cases increasing extremely quickly, including my own daughter, and several others on this site and other sites. I think that typically curves are slower in order to explain the orthopedists saying that one degree a month is a maximum, but they certainly can and do move fast in some kids. And you have to be aware that your daughter is now at the point where the disfigurement can become much more noticeable with additional growth.

It is my belief that exercise will not hold a curve in the adolescent growth spurt without a brace. (Until evidence on torso rotation exercises is actually available and valid). I believe that Schroth also uses braces during the growth spurt. My daughter was in ballet 6-7 days a week and it certainly did not hold the curve and many other ballet students are diagnosed with scoliosis also, and ballet definitely works the spine muscles. And this is two hours every day.

Also, please realize that the process to make the brace can be a long process also, so once you make the decision to brace, if you do...add in quite a bit of time before your daughter actually receives the brace.

Anyhow, just things to think about. Good luck to you and your daughter, and remember that she will cue off your response to bracing. If you are against the bracing, she will most likely not accept wearing the brace for long or enough to allow it to work.

Sending hugs to you and your daughter!

[concerned dad]

BalletMom, we dont know that he did a hand xray. SHe said he "did a special xray for growth". That might imply just assessing her Risser sign.
Bigbluefrog, Here are my two cents:
I think everyone will agree that the doctors assessment of a maximum curve increase of 1 degree/month is not correct.
Attached is a figure from Sanders 2007 showing individual curve changes for a cohort of girls. Some are fairly stable and others show very rapid progression. The thrust of the paper was trying to determine just WHEN does the rate of increase for curves start (and what are reliable indicators for timing this (menses, age, Risser sign, skeletal maturity from hand xrays, etc). This figure is illustrative of the huge variability in curve progression however it pretty clearly shows your doctors statement as being somewhat, shall I say, misleading.
Both BalletMom and Pooka make valid points.
BalletMom notes that your daughter is at an age when curves are likely to progress rapidly (if she happens to fall in the category of having an advancing curve – she may not). IF your daughter falls into the category of having an advancing curve, in a very short time her curve could progress such that you loose the option of night bracing (or VBS). These two techniques seem to work best on smaller curves.
Pooka notes that the evidence for bracing efficacy is weak and our understanding of the natural history of scoliosis is incomplete. She is pretty much saying that you may subject her to bracing unnecessarily or, even if you do brace, she may progress to require surgery anyway.
That leaves you in a conundrum. You have two smart people, both experienced with dealing with children with scoliosis and aware of the strengths and weaknesses of the literature giving you somewhat opposing advice. It is going to come down to a personal decision, and, although you might second guess yourself in the future, you can not know now if there is a “right” decision. Do some soul searching but don’t beat yourself up over whatever you decide.
Now, if I were you, this is what I would do (and it leans towards BalletMom’s advice).
I would consider getting a second opinion. Does the doctor you saw specialize in scoliosis? Is he a member of the Scoliosis Research Society (SRS) – while not a litmus test for a good doctor, it does give you some indication of his experience in treating scoliosis.
I would educate myself about scoliosis. You have obviously started to do this. Try to understand both sides of the debates about bracing and exercise therapy.
Try to get that new genetic test from Axial Biotech. It might provide an additional data point to help you make a decision.
IF you are inclined to brace your daughter, give some serious thought to a night brace. It seems like a reasonable compromise (Note that both BalletMom and Pooka choose that route after weighing their options).
If you are considering a night brace, try to determine if that is an option your doctor (either the existing one or the second opinion one) offers. If you are considering VBS, try to get an appointment with one of the doctors who specialize in that.
There is no right or wrong answer. This whole thing is a crap shoot. You can go to different doctors, each equally informed, and get different advice.
And remember, no one on these forums are qualified to give medical advice. We are just offering our opinions and these should be taken with a grain of salt.
Good luck and keep us informed.

[Ballet Mom]

There is no right or wrong answer. This whole thing is a crap shoot. You can go to different doctors, each equally informed, and get different advice.

Doesn't that just sum it all up right there! Thanks CD, good post.


Actually, on thinking about it, that's not quite true. I think you can increase your odds of success quite a bit by bracing with a good brace, but of course, nothing is guaranteed.

[concerned dad]

“Never heard of the SpineCor”? That suggests to me that this person is not current with the medical literature. I mean, come on. You can’t help but “hear” about the SpineCor if scoliosis is your speciality. You might not believe in it, but you would have at least heard about it.

If you’re going to try conservative treatments (bracing or exercise) you should find someone who is on top of their game. A good “surgeon” does not necessarily equate to a good “bracer”. Yes, you want an orthopaedic doctor/surgeon, but be SURE he specializes in scoliosis not knee replacements.

When you say your daughter is Risser 1, is that what you were referring to when you said the doctor did a special xray to assess her skeletal maturity? What BalletMom was referring to was an xray of the hand. Recent credible medical research has shown that to be a superior indication of skeletal maturity. HOWEVER, the fact that she is pre-menarchal affirms the suggestion that she still has significant growth remaining.

I would go to SRS.org and see if the doctor you saw was listed as a member. I would also see what other doctors in your area are members.

I am sorry to plant doubts in your mind about your doctor. I do not intend to offend. But, I’ll through this one other thought out there for what it is worth.

Exactly who read your daughters xray? Was it from a single film of her spine or was it across 2 films? The reason I ask is that the original doctor (radiologist) who read my daughters xrays did NOT use the standard full spine xray but rather taped together two (upper and lower) spine xrays and read her curve to be significantly LESS than what it actually was. Your daughter has a double curve. They are more challenging to measure. Maybe, just maybe, you are in a similar situation (hopefully opposite) and your daughters curve was read incorrectly. At your daughters age, big difference between 25 degrees and 20 degrees. Big difference.

[Pooka1]

The Pediatrician never heard of Spinecor, but she was very supportive of Schroth and has seen good results. I scheduled an evaluation there. And trying to get insurance coverage.

Note to Concerned Dad who misread this... the PEDIATRICIAN never heard of Spinecor. There was no statement about an orthopedic surgeon not hearing about it which would have been unbelievable frankly.

Interesting that you state a 5* change in a month....ouch. We will have to definitely get a second opinion. Who would you see? besides an Orthopedic surgeons.

I find it jaw-dropping that a pediatric orthopedic surgeon told you that a curve couldn't move more than one degree a month. I am guessing this guy doesn't work on spines AT ALL. This is not the most uncommon finding out there. Is it possible you misunderstood him? Maybe he said if your daughter stayed under 50* at maturity that her curve would only be expected to move a degree a year on average? I've heard that one.

Correct me if I am wrong, it appears some will get better some progress no matter what and others stay stable...is it a YSMV kinda deal?
YSMV= your scoliosis may vary....everyone is unique and you could do everything right and still need surgery.

You got it in one. Absolutely nailed it. Good work. :)

I wanted to bring up the issue of the BRAIST Study wherein there is an honest admission up front that the bracing literature (i.e., evidence) does NOT support the use of bracing as the standard of care. This is a very curious situation indeed. Because of this lack of evidence, they are recruiting now for a large controlled trial... kids are randomly assigned to either brace or observation. This is the first study that has some hope of finally answering the question of whether or not bracing is effective.

http://braiststudy.com/

About 20 institutions have signed up to participate. That is more than a few surgeons who are doubtful enough about bracing such that they think having an observation group is ethical.

Food for thought.

[Pooka1]

IF you are inclined to brace your daughter, give some serious thought to a night brace. It seems like a reasonable compromise (Note that both BalletMom and Pooka choose that route after weighing their options).


It is not accurate to say I "chose" a brace. The surgeon suggested it and I went along, not knowing at the time the miasma of uncontrolled studies that constitutes bracing "research" to date.

When you look at the relatively few papers that deal with the abysmally low efficacy of bracing with connective tissue disorders, it is okay to tell you daughter she can stop wearing it. At the time my daughter was prescribed the brace, she didn't have the hypermobility diagnosis. That, in conjunction with the small literature would have caused me to push back a bit and question the bracing more.

At the time, my daughter wanted to try the Charleston though. Given that, I would have gotten it for her even if I was 1,000 percent convinced it would be a waste of time. She gets to try whatever she wants in my book (except overtly quacky stuff which I will not pay for).

[Ballet Mom]

I wanted to bring up the issue of the BRAIST Study wherein there is an honest admission up front that the bracing literature (i.e., evidence) does NOT support the use of bracing as the standard of care.



I'm not so sure that is an accurate portrayal. Most bracing studies DO support bracing as the standard of care. Braist study researchers pretty much stated that not everyone agreed on bracing, and voila, equipoise, and voila our study is ethical, even though most of the doctor's opinions showed that the doctors do agree that bracing helps, they just disagree on how much, if I recall correctly.

My daughter's curve didn't just magically stop on its own.

Bigbluefrog,

If you get a second opinion, you definitely need to have her seen by an orthopedic surgeon, preferably in the Scoliosis Research Society, as her curve is at a critical point and with her only at Risser 1, she can progress substantially very quickly. She shouldn't be being seen by anyone other than an orthopedic surgeon.

It's just my opinion, but I would stay away from the Spinecore since your daughter is in her adolescent growth spurt. We have not seen anyone successfully get through this tremendous and forceful growth spurt using the Spinecor on this forum. We are still looking though and hoping that someone might possibly do so, however, I wouldn't want my daughter being the umpteenth to fail this critical growth stage.

At least your doctor must think your daughter can use a Boston brace with the pump. I'm quite sure your daughter is not the only one that's been in that situation. They can hopefully make cutouts in the brace to help her with her pump. Your orthotist and doctor will be the best to advise you on those issues. Hopefully your daughter could try out the Providence brace. It is useful on smaller double curves, however, it's not available in all parts of the country. You can always ask your current surgeon who sounds highly recommended if a nighttime brace is an option for her. She just needs to have a flexible spine and curves under 35 degrees, I believe.

Concerned Dad,

We did not choose my daughter's brace either. That is what the surgeon recomended for her. He told me that is what he'd put his daughter in if she had scoliosis. I think that's actually a proper method, at some point, a patient needs to rely on the doctor's expertise. I think most surgeons tend to want to use a TLSO brace as a first choice and then those children or parents that balk at the brace might be given a nighttime brace. I think that may vary in warm climates where the surgeons tend to prescribe nighttime braces because due to experience, when the kids get too hot, they won't wear their braces and therefore the bracing fails.

[Ballet Mom]

Okay, I have no idea where that super smiley face came from at the top of my last post and I can find no way to delete it! :confused:

[Ballet Mom]

When you look at the relatively few papers that deal with the abysmally low efficacy of bracing with connective tissue disorders, it is okay to tell you daughter she can stop wearing it. At the time my daughter was prescribed the brace, she didn't have the hypermobility diagnosis. That, in conjunction with the small literature would have caused me to push back a bit and question the bracing more.


I don't believe being hypermobile is considered a connective tissue disorder in terms of bracing either working or not working because of it. It's really not considered a disorder at all unless someone's joints start hurting or dislocating from it.

[Pooka1]

My daughter's curve didn't just magically stop on its own.


Actually, you have no good evidence it didn't stop on its own. The only change in measurement occurred between two different offices (the first one not an orthopedic surgeon IIRC) and we know the inter-operator variability has been documented at +/- 10*.

That plus if the difference in measurements is real, it is unprecedented (over 16* in less than a month). That may in fact be impossible, pointing back to the variability between offices.

Since you don't have any measurement done in the same office that shows any change, the most conservative conclusion that is also consistent with know maximal rates of curve movement is that the curve stopped BEFORE you started bracing.

I think if you are going to make these statements to new mothers trying to figure this out, you should just post the measurements, dates, and offices where they were done and let others make their conclusions.

It is very misleading to state your conclusion that the brace worked when you really have no good evidence for that statement.

Bigbluefrog, please look at Balletmom's data and make your own conclusions. Always do that with everyone's posts, mine included (except Ti Ed who is wise beyond his years).

[Ballet Mom]

Pooka,

I think it's shameful that you are trying to convince every new parent on these forums to go directly to surgery. Shame on you. :mad:

My daughter was twelve, premenarchal by almost a year, and Risser zero when she was diagnosed and was progressing in front of my eyes. I was able to watch her spine doing battle with her brace during the bracing period. She has grown three to four inches since she got her brace and her curve has not progressed at all. I think it's ridiculous for you to be drawing any kind of conclusion other than the brace stopped the curve in its tracks.

[Pooka1]

Pooka,

I think it's shameful that you are trying to convince every new parent on these forums to go directly to surgery. Shame on you. :mad:

Again an ignorant conclusion.

I think your conclusions can be shown to be faulty on any number of topics, not just this one.

My daughter was twelve, premenarchal by almost a year, and Risser zero when she was diagnosed and was progressing in front of my eyes. I was able to watch her spine doing battle with her brace during the bracing period. She has grown three to four inches since she got her brace and her curve has not progressed at all. I think it's ridiculous for you to be drawing any kind of conclusion other than the brace stopped the curve in its tracks.

Post the dates, measurements and offices. Let others make their own conclusions. Your conclusion is not supported by your data.

[Ballet Mom]

Again an ignorant conclusion.

I think your conclusions can be shown to be faulty on any number of topics, not just this one.


Post the dates, measurements and offices. Let others make their own conclusions. Your conclusion is not supported by your data.



I think it's shameful that you are trying to convince every new parent on these forums to go directly to surgery. Shame on you. :mad: And I still think you need to come clean as to whether you're associated with the Braist study, any orthopedist's office, or medical device company or any other group that would be promoting spine surgery.

[Pooka1]

I think it's shameful that you are trying to convince every new parent on these forums to go directly to surgery. Shame on you. :mad: And I still think you need to come clean as to whether you're associated with the Braist study, any orthopedist's office, or medical device company or any other group that would be promoting spine surgery.

I am now adding "conspiracy theorist" under your column.

Unbeknowst to you, it is actually painfully obvious that I know ZIP about medicine. Pnuttro will vouch for me here I hope. :)

It is only because you know less than ZIP and don't do research that this isn't obvious to you.

It's all of a piece.

Post the data. Why not? It's in some thread that I can't remember at the moment so it's posted to the group. Given that, why not repost it?

[Ballet Mom]

Screw you.



For those who may not understand my response, I am pointing out that Pooka has deleted her most abusive comments as you can tell by the editing times shown on her prior post.

Last edited by Pooka1; 10-15-2009 at 07:08 PM.

She edited out the most abusive comments two minutes after this comment of mine in order to try to look innocent.

[Pooka1]

Screw you.

Lovely.

I am asking you to post the data you have previously posted and you are refusing. There is a reason for that.

[Ballet Mom]

Lovely.

I am asking you to post the data you have previously posted and you are refusing. There is a reason for that.

There is no reason other than you are too lazy to find it yourself. It is quite obvious you know nothing about medicine and how dare you try to send every child to major spine surgery. You are dangerous. I won't waste my time on the likes of you.

[Mom_15]

I understand that I may be interrupting a possibly interesting argument between BalletMom and Pooka, but just in case someone on here doesn't know ... We have had success with the Spinecor brace in idiopathic AIS. My (now 15 year old) daughter's curve has decreased from 48 (out of brace) to 24 (out of brace). And she experienced a growth spurt. (We also do exercises and see a chiropractor regularly.) We experience the opposit results in the Boston Brace.

I agree completely with YSMV and think that this may be the truest statement that I have ever seen anywhere on this forum!

[Ballet Mom]

I understand that I may be interrupting a possibly interesting argument between BalletMom and Pooka, but just in case someone on here doesn't know ... We have had success with the Spinecor brace in idiopathic AIS. My (now 15 year old) daughter's curve has decreased from 48 (out of brace) to 24 (out of brace). And she experienced a growth spurt. (We also do exercises and see a chiropractor regularly.) We experience the opposit results in the Boston Brace.

I agree completely with YSMV and think that this may be the truest statement that I have ever seen anywhere on this forum!



That is wonderful news. I would love to hear more about it! It would be wonderful to see some success stores of the spinecore and the adolescent growth spurt. Perhaps you could start a new thread?

Thanks.

[Pooka1]

There is no reason other than you are too lazy to find it yourself.

You have the data in your head and won't repost it. There is a reason.

I would have to sort back though loads of nonsense. I did look just now and didn't find it. Did you delete it to avoid this issue?

I won't waste my time on the likes of you.

Look, you have said that before and even decided to leave, writing a "good bye" letter to the group that was so out of bounds it was deleted by the moderator.

I don't think you should leave. But it would be nice if you tried to understand the data and not make comments that are unsupported by evidence without qualification, especially to new folks trying to figure this out.

And the conspiracy theories just make you look nutty when in fact you mentioned your career (I won't repeat it) and it is not nutty. Why undermine your credibility in this way?

CD knows what I do. Perhaps he might confirm, without details, I am not in any way shape or form associated with the medical community other than as a consumer. Or not. I don't want to obligate him to do anything associated with this ridiculous discussion.

If you told me you weren't associated with the medical community I would believe you. Despite all the nonsense, I don't think you are a liar. You can't afford the same consideration to me.

Why get so mad that you write "screw you"?

Life is very short.

[Ballet Mom]

You have the data in your head and won't repost it. There is a reason.

I would have to sort back though loads of nonsense. I did look just now and didn't find it. Did you delete it to avoid this issue?



I think you need to look in the mirror at who's the conspiracy theorist.

But it would be nice if you tried to understand the data and not make comments that are unsupported by evidence without qualification, especially to new folks trying to figure this out.

Exactly when did personal observation not become part of the scientific method?

Why get so mad that you write "screw you"?

Why do you intentionally belittle and provoke, incite, intimidate, bully, you name it? Do you get bored and like to get in fights with everyone? What makes you right about anything? I don't see much in the way of you providing any insight into this forum other than trying to get kids into major spine surgery ....why do you do that? Answer please. I'd like to know. Just because you can't come to grips with you daughters wearing a brace, you think everyone else is as traumatized as you about it? I don't believe you know anything about medicine, that is clear to me anyway, however, lots of non-medical people work for firms that can promote things without medical knowledge. I think you owe an explanation for your antagonism towards anyone who doesn't think surgery should be the first option for anyone. If you don't want people to get angry, stop provoking them. You know you do it all the time, I have to assume for fun. Can you actually read your posts and find that they are not absolutely antagonistic and demeaning? What a joke.

[Pooka1]

I don't see much in the way of you providing any insight into this forum other than trying to get kids into major spine surgery ....why do you do that? Answer please.


I ask the jury... is this my intention in any way, shape or form?

I'll sit back and read any answers that might be forthcoming.

I might ask you to post evidence for this statement but you and I have different definitions of "evidence." Mine are scientific.

[Ballet Mom]

I ask the jury... is this my intention in any way, shape or form?

I'll sit back and read any answers that might be forthcoming.

I might ask you to post evidence for this statement but you and I have different definitions of "evidence." Mine are scientific.

Step right up folks. This is your opportunity. And please don't ignore the other aspects of my posts when you respond. And I'm still waiting for an answer from you, Pooka, regarding the other comments on my post.

[Pooka1]

Bigbluefrog,

Post #40

http://www.scoliosis.org/forum/showthread.php?t=8895

[Ballet Mom]

You have the data in your head and won't repost it. There is a reason.




Okay, now please tell me what the reason is that I am hiding this from the world for some reason. How nefarious.

[Ballet Mom]

Please note number 42 also:

March 2008, upper curve 35 degrees.

April 2009, upper curve 32 degrees - out of brace for approximately thirty hours.

I presume that would be considered a rate of zero.


Best evidence there is, Risser Zero, premenarchal, and three to four inches of rapid growth. Please explain how the brace didn't work Pooka. Scientifically.

[Bigbluefrog]

“Never heard of the SpineCor”? That suggests to me that this person is not current with the medical literature. I mean, come on. You can’t help but “hear” about the SpineCor if scoliosis is your speciality. You might not believe in it, but you would have at least heard about it.



sorry for the confusion, I jumbled my post...its her pediatrician that didn't hear of spinecor not the orthopedic surgeon.

The orthopedic surgeon is top dog at Children's hospital, and I consulted with several of his patients. They all say he is the best in his field with Scoliosis.
I talked with those who have had surgery and had great results with his treatment. in other words he comes highly recommended.

[Bigbluefrog]

I understand that I may be interrupting a possibly interesting argument between BalletMom and Pooka, but just in case someone on here doesn't know ... We have had success with the Spinecor brace in idiopathic AIS. My (now 15 year old) daughter's curve has decreased from 48 (out of brace) to 24 (out of brace). And she experienced a growth spurt. (We also do exercises and see a chiropractor regularly.) We experience the opposit results in the Boston Brace.

I agree completely with YSMV and think that this may be the truest statement that I have ever seen anywhere on this forum!



Hey which one did you go to for fitting...we are looking at spinecor too

And concerned dad...thanks for the site and the doc is listed under it...he took several radiographs and it was a solid profile...boy you all know your stuff.

Curious~why did her lumbar curve go down 3.5 degrees? and her thoracic curve reduced .5...so basically the top curve stayed the same...the lower curve improved...how does that happen?

[Bigbluefrog]

Please note number 42 also:




Best evidence there is, Risser Zero, premenarchal, and three to four inches of rapid growth. Please explain how the brace didn't work Pooka. Scientifically.

So out of brace with spinecor...it was reduced? Really :D:D:D:D:D

that is the kind of evidence I need to see more of!!!

[Ballet Mom]

So out of brace with spinecor...it was reduced? Really :D:D:D:D:D

that is the kind of evidence I need to see more of!!!


Hi Bigbluefrog, sorry that your thread got hijacked a bit.

Anyhow, my daughter wore the Charleston Bending brace and is currently in a custom night time brace that is similar to a Providence brace. She has never been in a Spinecore brace and I have to say I don't believe the Spinecore could have possibly held my daughter's curves.

Any reduction in small amounts of these Cobb angles measurements could be due just to the different measurements. For instance, your curves were first read by one person, and then by the orthopedist, I assume with new x-rays. Those are all within the margin of error due to just positioning during the x-ray, or the person choosing the points from which to measure. Anything within five degrees could possibly be due to measurement error...possible, perhaps probable, but not necessarily so. So it could be that your daughter's and my daughter's spine didn't actually change at all.

[hdugger]

I'm never sure this kind of thing is helpful . . . but, yes, I do feel that you have the same kind of "believer" intensity towards non-surgical methods *not* working that you suggested the Dingo has towards them working. I find most of your posts on other topics very helpful, but in this arena your passion often seems to be cloudying the waters.

More importantly, as they mentioned during the last dust up over at the Scoliosis Support forum, when someone has this kind of heat against certain topics, it makes it very intimidating for new parents to come in and talk about their experiences. That's a shame. This is a critical time in those parents' lives, and the constant heat on these topics may be keeping a child from methods that could help them.

I don't intend this as a slap. I find most of your posts helpful and informative. But, you asked for some feedback, and I thought it would be helpful to offer it.

I ask the jury... is this my intention in any way, shape or form?

I'll sit back and read any answers that might be forthcoming.

I might ask you to post evidence for this statement but you and I have different definitions of "evidence." Mine are scientific.

[Pooka1]

I'm never sure this kind of thing is helpful . . . but, yes, I do feel that you have the same kind of "believer" intensity towards non-surgical methods *not* working that you suggested the Dingo has towards them working. I find most of your posts on other topics very helpful, but in this arena your passion often seems to be cloudying the waters.

More importantly, as they mentioned during the last dust up over at the Scoliosis Support forum, when someone has this kind of heat against certain topics, it makes it very intimidating for new parents to come in and talk about their experiences. That's a shame. This is a critical time in those parents' lives, and the constant heat on these topics may be keeping a child from methods that could help them.

I don't intend this as a slap. I find most of your posts helpful and informative. But, you asked for some feedback, and I thought it would be helpful to offer it.

Okay thanks for the feedback.

I did find it helpful.

ETA: BTW, I don't disagree with your characterization of my "zeal" in pointing out the lack of high quality evidence for non-surgical methods. I think it is obvious that most new folks and even many experienced folks don't understand the extreme difference in the level of evidence. And so we have open charges that the BRAIST researchers are unethical. That is a symptom of the lack of understanding of the various evidence cases and is unfair.

I am a researcher though not in a medical field and I do take great exception to people who don't know the evidence cases accusing honest researchers of nefarious acts. And I really take exception to lay people coming on here claiming this is simple and that they have solved key medical dilemmas simply by quote mining from near-random papers. The inescapable implication of those posts is that these researchers are clearly too dumb to see the answer right under their nose. I find those comments extremely irritating and ignorant about how research works. And medical research, where you are so restricted in being able to do controlled studies, is an order of magnitude harder than other fields. I have learned to cut these people some slack and I think others need to learn the same thing.

[Bigbluefrog]

Ok I understand the difference in measurements may be the one reading and measuring...but the visual of the two were definitely different....

I would post her xrays online...but I am not sure how to do that...anyone?

the first you can see the lumbar is more curve and the hips were off....now granted I really don't want to get to confident...because I was not in the room with the first xray and it may be inaccurate.

[Pooka1]

Ok I understand the difference in measurements may be the one reading and measuring...but the visual of the two were definitely different....

I would post her xrays online...but I am not sure how to do that...anyone?

the first you can see the lumbar is more curve and the hips were off....now granted I really don't want to get to confident...because I was not in the room with the first xray and it may be inaccurate.

There was a Spinecor article that showed a kid could produce an 11* reduction in her measured Cobb angle simply by standing funny.

If you shot a radiograph, told the kid to walk up and down the hallway, and then shot another radiograph in less than 5 minutes, and had the same person measure both curves, I would not bet even $100 the two measurements would be within 5* necessarily.

This isn't an exact science by a long shot.

[Pooka1]

so according to you surgery is the only way?

Surgery is the only proven way to do certain things. It is not the only proven way to do other things.

What about the success of those who chose braces and exercise and have seen improvements?

Bracing, as in Spinecor for pain in adults and PT for the same has been shown to be effective. The orthopedic community, on the whole outside of the inventors, doesn't not appear to accept the efficacy of Spinecor bracing to permanently stop curve progression in AIS or adults as far as I know. There are now at least two studies that show Spinecor is not effective in the AIS crowd. Thus the ONLY papers at present that shown efficacy of Spinecor are all written by the Spinecor inventors as far as I know... someone correct me if I'm wrong. Until people without a financial stake start replicating their results, I don't think the orthopedic community will adopt Spinecor in any great numbers.

Some in the orthopedic community think and believe bracing is effective for some segment of the AIS population but I don't think you will find anyone who says the literature contains good evidence for that.

The jury is still out on bracing...hence the BRAIST study with an observation group is considered ethical by those familiar with the literature. Those who are unfamiliar with the literature falsely accuse the BRAIST researchers of being unethical.

I have read through this forum, and I get the feeling there is no right way...sometimes it works sometimes it doesn't..

Totally agree.

It is what it is...I imagine most of us would be honest and say no to surgery if we had a choice...the more conservative route would be brace and exercise.

Totally agree. My one kid tried bracing and I would have supported her in that no matter what I thought because bracing isn't quacky like some other things I could name. It might work and I think it will eventually be shown to work in some relatively small fraction of AIS cases.

I had a friend tell me chiropractor care could heal my dd of diabetes type 1 and scoliosis...mmm can I get that in writing with a money back guarantee?:p

That's really a shame how some chiros give all of them a back name.

Quackwatch has a huge section on chiros (Chirobase) as you can well imagine but they also say some are ethical. There is a group of "evidence-based" chiros that are the only hope going forward for that profession.

[Pooka1]

Please note number 42 also:

Best evidence there is, Risser Zero, premenarchal, and three to four inches of rapid growth. Please explain how the brace didn't work Pooka. Scientifically.

Check this out. It might answer your question.

http://www.scoliosis.org/forum/attachment.php?attachmentid=518&d=1255882592

Clearly you can't go by Risser. Note the jump form 0+ to 4.

How old was she when you got the first reading from the orthopedic surgeon (NOT the clinic or whatever)? I think you said she was older compared to some other kid here.

Also most of the rapid growth could have been in her legs. There is no set pattern. Her spine may not have grown much during that period.

Last, recall Pam made it to 50 as a JIS case and STAYED there until her surgery at 39. Given that, it is not shocking to suggest your daughter reached the 35* (or whatever) any time before that first data point from the surgeon. You can't tell from the data in hand when the curve stopped. Like CD's daughter, it may not have moved at all whether or not your daughter was wearing a brace. Just because she was wearing one, you automatically attribute the stability to the brace.

But as someone else so wisely said... at this point you can't ever show when a brace is working... you can only show when it isn't. This goes to the large error bars on this stuff, sometimes encompassing nearly the entire range.

I just hope you consider these points when telling new folks you have proof the brace halted your daughter's curve. It's potentially misleading otherwise.

[Ballet Mom]

Pooka-

Clearly you can't go by Risser

I have talked about the need for orthopedic surgeons to use the hand x-rays instead of Risser. It is, however, the measurement used by all three of the highly distinguished orthopedic surgeons my daughter has been evaluated by and so I posted it. It does tell you that it didn't read at a higher Risser number than zero.

How old was she when you got the first reading from the orthopedic surgeon (NOT the clinic or whatever)?

Twelve, a very normal age to be diagnosed with scoliosis, and by the way, the first measurement from the school clinic was from an orthopedic surgeon.

I think you said she was older compared to some other kid here.

Really, what the heck does that have to do with anything? And no, I said no such thing...you're making things up again.

Also most of the rapid growth could have been in her legs. There is no set pattern. Her spine may not have grown much during that period.

My daughter has had very long legs for a long time...that's why she's still in ballet. If my daughter's torso hadn't grown in the last three to four inches of growth, she would now look very odd...and she doesn't. In fact, I have been noticing in the past month that her torso is actually relatively longer than what it has been in the past...very typical from what I've seen of ballet dancers reaching their high school years. They have long legs and then with their final growth in high school, some suddenly don't have a professional ballet body anymore because their torso is suddenly longer in relation to their legs. It's amazing to watch. Fortunately for her, so far her legs are still long enough compared to her body to still be in the running....but we'll see.

Last, recall Pam made it to 50 as a JIS case and STAYED there until her surgery at 39.

Exactly what does Pam's case have to do with my daughter? Really.

Given that, it is not shocking to suggest your daughter reached the 35* (or whatever) any time before that first data point from the surgeon. You can't tell from the data in hand when the curve stopped. Like CD's daughter, it may not have moved at all whether or not your daughter was wearing a brace. Just because she was wearing one, you automatically attribute the stability to the brace.

I think it's pretty obvious that the size of scoliosis curves are a function of growth in kids. I seriously doubt the curves just stop out of the blue, unless they aren't growing at that moment. The fact that my daughter grew three to four inches rapidly suggests that the brace did indeed stop the curve from increasing in size. All studies point to the fact that my daughter was indeed likely to have progressed to surgery without a brace...and I truly believe that to be the case.

I just hope you consider these points when telling new folks you have proof the brace halted your daughter's curve. It's potentially misleading otherwise.

Those are your words.....and I truly believe that it is you that is trying to mislead people.

And by the way, the only reason I am still reading and responding to these comments of yours is to make sure that you aren't misleading people with every single post that you make.

[Ballet Mom]

By the way, I noticed someone on this board recently that I believe experienced an increase in curve in the double digits, within a two month time frame according to their signature. Perhaps this person could share their experience with a curve that progressed so signifcantly and so quickly.

[Ballet Mom]

Also most of the rapid growth could have been in her legs. There is no set pattern. Her spine may not have grown much during that period.



I think that is incorrect, both from my experience observing ballet students, and in the information I have managed to collect in my own "research".

I am posting a quote out of the Journal of Pediatric Orthopedics entitled Growth in Pediatric Orthopaedics by Alain Dimeglio, M.D.:

Journal of Pediatric Orthopaedics
21:549–555 © 2001 Lippincott Williams & Wilkins, Inc., Philadelphia

During puberty, standing height increases by approximately
1 cm per month. At the onset of puberty, boys
have 14% (± 1%) of their remaining standing height to
grow. This is approximately 22.5 cm (± 1 cm) made up
of 13 cm in sitting height and 9.5 cm in subischial leg
length. Girls have 12% (± 1%) of their standing height to
grow. This is approximately 20.5 cm (± 1 cm) made up
of 12 cm in sitting height and 8.5 cm in subischial leg
length (12,34–36) (Figs. 2,3).

Growth rate peaks during puberty between 13 and 15
years of bone age in boys and 11 and 13 years of bone
age in girls. By the time girls and boys pass bone ages of
13 and 15, respectively, lower limb growth comes virtually
to a standstill, with all remaining growth (4.5 cm)
taking place in sitting height (12,34–36).

I can't post the whole article because it is a PDF file and I can't find a link anymore to the article...who knows where I picked it up. But I think this clearly shows what I have seen in the ballet students, i.e. in the ninth grade some of the ballet students suddenly look longer in the torso relative to their legs.

I wish I could post the whole file because it's extremely interesting and has a couple of great charts. If you can get hold of it somehow, it is a good find.