spine-cor vs. Boston brace

[gerbo]

good question..... maybe you could ask them; "some parents seem to be seeing very good results, in line with published study, any idea how that's possible??". I would be interested in their replies. (and maybe at the same time ask them how good their results are with hardbracing (if they know, lots of hospitals will not keep a systematic record I would guess)) Another question could be what they actually thought of the article describing the results (which was published in 2003). If they genuinely are interested in treatment of scoliosis they should at least have read that, which would go in their favour. If they haven't read it, well, I would not take much notice of their views than....

I am happy with constructive critisism, I do however sometimes think that lots of clinicians are not particularly interested in the nonsurgical treatment of scoliosis, and will therefore not put much effort or thought into it, possibly contributing to less than good results, resulting in further strengthening of negative attitude, etc, etc. Anything what doesn't fit in with this negative image/ attitude must by definition be "too good to be true, or even fraudulent....."

[mariaf]

mylittleangel,

thanks so much for the kind words!! I think it is true of everyone on this great forum that we take pleasure in sharing what we have learned with others and helping kids with scoliosis whenever we can. Nonetheless, it was very sweet of you to say those things

best,

[Celia]

...As for my opinion on the spine cor debate going on,I truley dont know.I do know it truley intense.

Who's intense? Gerbo...yes. I'm thinking back to his variations on enigma LOL!! Very smooth! We have to follow our own path, where ever it may lead. I'm cool and relaxed despite the fact that we have our followup next week. Nervous ? Yes. I am planning to enjoy our week in Montreal.


*****

[gerbo]

it is indeed very much about finding, choosing, being comfortable with the path we choose, as (mostly) there is no going back on decisions taken. We all need to be prepared that in so many years we could well be looking back and having to say, no, it hasn't worked out as I expected, but at least I did the best i could, given the circumstances and information available.

I don't think there are many absolutes in this game (well, i can think of a few, I suppose, but i won't mention vestibular testing), it is really, whatever you feel comfortable with, and whoever you feel you can trust.

[mariaf]

gerbo,

I don't think anyone could have said it better!

[gerbo]

two compliments on one page, starting to glow now.

[mylittleangel]

Just to calrify I wasnt calling a particular person intense,just the topic of spinecor as there are so many differences of opinion.It can make your outlook on the brace a little confusing at times.I understand and respect everyones opinion.We do have to find our own way,and pray it was the right one and realize that every scoli patient is different so not everything will work for everyone.
Gerbo my appologies if it seemed that comment was directed at you,it certainly was not.

[mariaf]

mylittleangel,

I can, of course, only speak for myself - but I don't think you have anything to apologize for - nor do I believe that you offended anyone

[gerbo]

honestly MLA, I did not think one moment you were aiming at me personally, no worries there.

[Celia]

I definitely think Gerbo is intense and full of passion! LOL!!!


******

[gerbo]

although I do know that I can get intense (as I have been told by people in the know) (edit; did not know celia was going to state this as well in previous post). But then in search of "the best way forward" or the elusive "magical bullet", you do have to be intense, critical, inquisitive, as you often find that the professionals who are supposed to know and advice, base their opinions on habit, prejudices, intellectual laziness and plainly sloppy science. And in this game you cannot rely on that.

I am genuinly interested to know whether the 3 doctors you have spoken to base their opinion on careful consideration of the facts or whether it is down to plain lack of knowledge and prejudice

In the end, we are all in the same boat, the wind is blowing, sea is rocky and a calm sheltered bay is hard to find.....

[mylittleangel]

Gerbo,
To be completely honest all three Drs didnt talk much at all on the topic.I asked about it and they pretty much had the same responce.Two of the Drs are in AR and told me the is no convincing evidence that it works,and they do not suggest it at all.The other in Mo told me NO way !! Was also pretty concerned about from who and where I even heard about it and to stay away from it.The discussion went no further.So as you stated it could be lack of knowledge,predjudice or any other reason.What concerns me is the intensity that they declined to even discuss it as an option.It felt as if the conversation of spinecor brace was the plague

[gerbo]

in a way, "no convincing evidence" is strictly speaking correct, as there is only one large scale but unconfirmed study and this could be seen as a reasonably informed viewpoint. The "absolute no" person most likely has no facts or evidence to base that opinion on (in a way has "no convincing evidence" ), so a bit of lack of knowledge or prejudice could be at play there.

What did it for me was; lack of benefit from hardbrace (we tried it for a year), the absolute hate lisanna developped for the hardbrace, a fair amount of medical support (partially as consultant thought that there is little evidence for anything at all, so you might as well try...), and the experiences of people posting on these forums, which are reasonable consistent and in line with the published results.

no certainties though (whatever you do)

[Celia]

Gerbo,

I wouldn't put too much weight in what these idiot doctors have to say! We're trailblazers to certain extent and forge our own way. I've read enough about scoliosis to know the difference between right and wrong. As for Deirdre... we're doing remarkably well, thank you very much! If I had listened to conventional wisdom five years ago, my daughter would have had surgery by now. Last time we checked, her curve was "1" degree in the Spinecor brace.


*****

[christine2]

Celia

Good luck next week. I hope you have the same exhilerating feeling as I did when you walk in to Dr. Rivards office for results.

I also feel as though we are trailblazers. Dr Rivard and Coillard are our guides. I am so impressed when Dr. Rivard is as excited about results as we are. I truley feel he is doing all his work for our childrens future.

As for Orthos not recommending Spinecor. I think that these doctors are over worked and have a hard time finding time to look into alternatives. I spoke to a friend today and she pointed out that the docs in the USA are afraid of alternative medicine. They are taught a certain way and to deviate from that is difficult. Our Ortho at Childrens Hospital in Connecticut told us to stay with spinecor that he did not have anything that would be more effective. I really think that he may see it as a possible treatment for some of these children. We all need to keep informing our orthos in the states of results so that some day the brace will be accepted. We also have to try to steer parents away from doctors that are not using tha brace properly and damaging its integrity.

As far as I am concerned spinecor has been the ONLY possible treatment for my daughter. I will be forever gratefull to the parents on this forum for informing me about it!!!
Christine