spinecor

[gerbo]

good question and indeed one always need to keep an open mind about these things.

a few pointers

* not all of us use dr rivard (too far when you live in the UK) (saying that, the orthotist attached to the orthopaedic surgeon my daughter sees happens to be the manufacturer of the brace, so he got personal interests)

* not all of us have universally excellent results, so if you are going to falsify, why not falsify all (conspiracy theorist; they do that deliberately to distract from their true devious nature)

* they are "proper" spinal doctors and have to much to loose if they are "found out" (but george bush was meaned to be a "proper" politician with much too loose if he would get things wrong or deliberately give incorrect information, see what happened there)

* most of us will actually have seen the actual before and after x-rays and "witnessed" the improvement (conspiracy theorist; yeah, and we all witnessed the apollo moon landing, whilst clearly this was all set up in a hangar in the nevada desert)

* we all have looked at our children, seen that they looked straighter, felt more comfortable...(ok,just wishful thinking)

So, yes on reflection, I think that all the other doctors are very sensible to continue to use their "savebet choice" of a hardbrace which we know often doesn't work and makes life hell for the children who have to wear them waiting for their inevitable surgery.

Still, good question (mean it, considered this myself early on)

[MATJESNIC]

Gerbo,

I GOT ALL YOUR HUMOR AND WIT TODAY!!!! Well done!!! Except that crack about my President, but I am sure it was said with great love!!!!

Now, about the Spinecor results. Of course, we are not all getting amazing results. My daughter's curve has not gone down at all out of brace.

Also, nobody has ever promised me great results. Every orthopedic we have seen has said that nobody knows how this is all going to turn out. Well, maybe God does. But none of us humans do.

There are a few kids who have small curves who are doing great with Spinecor. But the rest of us are struggling just like anyone else in any brace.

Nobody has come on and said this is an amazing miracle that has happened.

The reason the brace has not "caught on" in the U.S. is a complex one. Some of the factors include money, training, etc. The orthopedics I know here are not going to prescribe a brace that is relatively new and has not shown amazing results for kids with large curves like my daughter's. I can understand that. That is why we chose to do this on our own.

Melissa

[Celia]

Gerbo,

I GOT ALL YOUR HUMOR AND WIT TODAY!!!! Well done!!! Except that crack about my President, but I am sure it was said with great love!!!!

Didn't we resolve not to discuss matters relating to sex, politics, religion or the "V" word - Vestibular testing





********

[gerbo]

you think it is a sexual problem? Now that explains a lot.....

[cherylplinder]

Computerdown.RachelgotagoodreportThursday.22T20LYe ah.

[desheah]

congrats cheryl and rachel! can't wait to hear more once your computer is up.

deshea

[desheah]

Since you all see Dr. Rivard and you all seem to get similar results (which are outstanding , yet rather unusual in the field of scoli) do you ever wonder/worry if he could be bending (no pun intended) his facts and figures to 'sell' the success of an otherwise new-to-the-field brace?

I mean, it literally sounds too good to be true! And you know what they say about 'when it sounds too good to be true...it probably IS.' Why isn't absolutely every doctor prescribing this brace if it consistently gets these wonderful results? Why does anyone have to endure the other kinds out there.....?

I am just thinkin, here.....

i think it is great to question and think things through.

as for our situation, my son was really treated with serial plaster casting for 2 years. that is what got his curves down. (look at my signature) instead of hard bracing after that, i wanted to make sure his trunk muscles could support his straighter spine. that is the reason that we decided on the spinecor brace. we have not gotten his #s down really any further than they were after his last cast, but we can definitely live with 19o/13o. we are not a usual case so i can't speak for everyone. progressive infantile scoliosis usually is not a happy diagnosis so i am very pleased with the way that things have turned out for lucas. hopefully he will agree once he's older!

deshea

[Celia]

you think it is a sexual problem?

Gerbo,

Leading question if I ever saw one! LOL!!!


MyBabyGirl,

We also did serial casting for a few years with Deirdre and her stand up curve in the cast was brought down to the mid teens from 60 degrees. After being cast free for about three weeks before going into the Spinecor brace, her out of cast stand up curve was about 20 degrees. There is no doubt in my mind that her curve would continued to progress with time. She has been wearing the Spinecor brace for about a year and a half and her in-brace curve is 1 degree.

Personally, I think the reason why the spinecor brace is working so well for us is compliance and the fact that Dr. Rivard and Dr. Coillard are dedicated to see this whole thing work unlike most doctors/orthotists who have a couldn't care less attitude.


******

[mariaf]

I'm just curious as to why x-rays are taken IN the spinecor brace, not out of it. I only ask this because when David wore a hard brace for about three years, his doctor at Hospital for Special Surgery in NY always took an x-ray without his brace on. That was clearly the number she was more concerned with - his out of brace measurement.

Hence, my curiosity. Does anyone know the answer? I've just always wondered about it.

Thanks.

p.s. for those who wear, or did wear, a hard brace, did your orthos routinely take out-of-brace x-rays as well?

[desheah]

hi maria,

lucas did wear 2 hard braces concurrently (a tlso and charleston) for the 1st year (18mos-24 mos). he was only x-rayed in brace at the follow-up appt for the tlso after a month of wearing it. the rest of the year, he was x-rayed out of brace. he never had an in brace x-ray with the charleston.

i actually had a major problem with this since if lucas' #s were getting worse (which they eventually did), how do you know how the brace is affecting the curve. is the brace not pushing in the right area? i would prefer to have in brace x-rays during the routine visits, and then perhaps have an out of brace x-ray once every year. i know that you would like to know what the out of brace x-ray is, but if the brace is ineffective and your cobb is increasing, how will you know this without an in brace x-ray. i had many "discussions" with our first ortho about this. the orthotist and orthopaedist always said that they could tell where the brace was pushing based on where skin was red. needless to say, we went elsewhere after a year since we felt like they were not committed to bracing conservatively and were essentially waiting to perform grow rod surgery.

i feel like i'm rambling, but hopefully this makes sense.

deshea

p.s. good question!

[LindaRacine]

Hi Maria...

With hard braces, I believe xrays are taken with the brace on, once the child has worked up to the maximum number of hours that the brace is to be worn. That xray tells the physician if they're getting enough correction. (I believe that research has shown that if they don't get at least 50% correction, there is little chance that the brace will be effective in the long term.) After that, xrays are taken out of the brace, to monitor the child for progression.

Regards,
Linda

[desheah]

linda,

that is true that after a month when lucas was wearing the brace for the prescribed # of hours, we went back and had an in brace x-ray after a bit of tightening prior. lucas was corrected 50% and that was the magic #.

again, i know this isn't the normal case since lucas is so young, but he was growing quite rapidly during this time (which is true in adolescent cases as well although perhaps less so in the trunk area). i was really unsure that the brace was holding him in the right position. even when he outgrew his first tlso after 6 months, we did not get an in brace x-ray in the new tlso. i was quite flabbergasted. -- i will stop here because it's taken years of therapy for me to talk calmly about our first ortho! just kidding, therapy in terms of chocolate (right, celia ) and wine!

deshea

[christine2]

Mybabygirl

I am going to put my 2 cents in. I do not know if spinecor will work. I do not know if Dr Rivard and Dr. Colliard are being 100 % honest about their results. I do know that this is our only chance to avoid surgery. My daughter is only 6 and had a 33 degree curve (not good) If we had chosen a hard brace it would have be damaged her muscles, lungs and mind. I am a great judge of character and get the feeling that the docs in Montreal are truley in it for the kids!! We have seen a few other orthos and have gotten the feeling from them that they do not care, we were just another # and there is nothing they can do but wait for surgery. I did not accept that and neither will the docs in Montreal.
I have said it before it is all a crap shoot!!


Maria

I think that out of brace x rays in spinecor are useless until the muscles in the body are retrained to hold the in brace curve.

We just made our mnext appt. in Montreal March 1 2007. I can't wait.


Christine

[MATJESNIC]

Maria,

That is a good question and lucky for you I asked that question to the doctors in Montreal during one of our visits. Basically, they said that out-of-brace x-rays before the child is almost done with bracing (at least a 3 risser) is basically unimportant because it does not mean much. The back and the spine are going to go through changes and measuring it now without the brace is not any indicator as to how it will end up. I am not sure if they believe this for the hard, as well. Someone can ask next time they go.

Remember, an in-brace x-ray in a Spinecor is totally different from an in-brace x-ray in a hard brace. The hard brace is pushing the spine straight and hoping for a 50 percent correction that is temporary. The Spinecor is helping the body to begin moving a different way. The doctors are pleased with a 10 degree correction in-brace. Two totally different philosophies. Most orthotists will keep making changes until they get the 50% decrease. On the other hand, there is not much that can be done to the Spinecor to make more of a decrease. It gives you a more accurate view of what your final correction may be.

What makes me concerned is when I hear parents being given false hopes by being told that their child's curve went down out-of -hard brace, and their child was not out of the brace for any length of time before the x-ray was taken. That is a very inaccurate out-of-brace x-ray.

I have rambled long enough. I hope I answered everyone's questions.

[mariaf]

Thanks everyone for answering my question. I think I understand now that the Spinecor in-brace x-rays are supposed to be a reflection, or rough prediction, of how the curve will end up. Makes sense then to only be concerned with the in-brace number to see if the muscles are being trained properly. The theories behind the Spinecor, in my opinion, certainly make at least as much sense as those behind hard bracing. Hopefully, in the future it will be more widely available.

Desheah,

I totally agree with you that many orthos are just waiting to perform growing rod or other surgery. Our old ortho once said something to the effect that in some cases the brace was just buying time for some more growth. I knew what she was implying and it did not sit well with me. It's time for more alternatives like the Spinecor and the stapling to be offered to more of these kids - they may not be for everyone but there certainly are many kids who could benefit from them.