spinecor

[MJB]

I'm just curious about this... why is he worried about being out of brace more than two hours at a time versus more than one or three or five hours at a time? It seems arbitrary unless based on some data.

If there is some study out there showing this, could you point me towards it?

Thanks in advance.

He just always says "we are not the doctors" and if Dr. Rivard thought that being out of the brace for more than 2 hours at once was ok, then he would've said so.... I will tell him that there are other people that wear the spinecor brace that make exceptions and he says that he would prefer to go with what the doctor has said. It's frustrating because it even makes it hard to do fun outings that involve swimming.

One day I had her out of it for 3 hours for dancing pictures and he was calling me at the studio and was quite disappointed in me.

[MJB]

MJB,

My daughter feels the same way (about being the only one...she knows there are others from seeing them at Dr. Rivard's office, but with the exception of one boy, they were usually much older than her so it didn't help her) I'm not comfortable posting my daughter's pics on the internet, but if you want to PM me your email I could email you some pictures of my daughter - she'll turn 8 next month so they are similar in age. Is Halle going into 3rd or 4th grade next year?

Thank you! I understand about posting pics online. Halle is going in the 4th grade in Sept. What about your daughter? I agree, Halle has only seen older children there at her visits.

[MJB]

Oh and...

Too right BUT I don't think Marlowe's husband is doing this - he is actually wanting stick to the instructions of the medical professional that they have chosen to treat their daughter.

Edited to add, Marlowe - I would be more than happy to send photos of Immy if you pm me your email address. I also know that Celia (old member with daughter of similar age) is putting together a video for you tube. I'll keep you posted.

Laura

Laura that is exactly it! He is just thinking that if more than 2 hours at a time was ok, then Dr. Rivard would've said so... When we asked if swimming could be counted as "in brace" time, he said no, it had to be counted in the 2 hours.

[MJB]

It is reasonable to say that the in brace (Spinecor) xray will show progression of the curve only if the xray is taken before any adjustments are made to it.

For example: If I walk into the office and the doctor checks the brace, readjusts the brace, and then takes an xray. That xray will show the in brace curve after the brace has been corrected, that doesn't mean that the child has necessarily been getting that same correction for the months prior.

.

That is exactly my concern as Dr. Rivard does the xrays AFTER the adjustments have been made, so I have no idea how the brace has really worked during the 5 months between the appointments.

[mariaf]

Thank you for your response!!! I really would like to do this but I don't know how I could get away with it without him getting upset about it. Maybe once she has been in the brace for close to a year he'll understand more and think it's important too, hopefully he just thinks it's too early right now to have her out so long.

Thank you again, you are right!

Hi MJB,

I'm relieved and very glad that you understood I meant no harm, but rather my intent was exactly the the opposite.

Perhaps when you feel the time is right, you can have a talk with him (I'm sure you have tried before), but have him read here or elsewhere about the protocol for out-of-brace x-rays and the 24 hour period being quite standard and how in the grand scheme of things that one "timeout" won't harm her. I don't know if you have a doctor in mind that you would bring her to for an out-of-brace x-ray but if you do, then perhaps he or she could explain as well how they have all these kids take their braces off for 24 hours prior to x-ray and it does no harm.

Absent that, I guess just try to keep an eye on her - maybe not as good or as accurate as an x-ray but moms often can "see" when something is off or wrong. Look at her both when she is wearing the brace and when she's not. If she looks like she might be progressing to you, then you know it'll be time to take action.

By the way, and maybe someone else can answer this, but has anyone ever asked Dr. Rivard if an OCCASIONAL out-of-brace xray with no brace for 24 hours would cause harm in his opinion? He sounds like a good guy and a reasonable man so perhaps he'd agree to it if it puts a parent's mind at ease. Just curious if the topic has ever been discussed with him.

I've learned that sometimes it is a good thing to question doctors. Even among themselves there is not always agreement on treatment options and sometimes as the parents we need to weigh in.

My son had been seeing an ortho with a very good reputation in NY but she was very conservative and only believed in bracing or rods (fusion or growth rods). She did not embrace VBS when I mentioned it five years ago because she felt it was too new. I felt I needed to find a better alternative than her plan to "brace David for his entire childhood and then probably fuse him anyway". So I spoke with other doctors, then with parents of kids who had VBS, then I read whatever info was out there at the time and my husband decided that while there were no guarantees, we'd go ahead with VBS as it made more sense to us - both in the treatment of his scoliosis and for his quality of life.

Now I am NOT comparing your situation to mine because this is the plan you have chosen NOR am I questioning that plan. I'm simply saying that you should NOT be afraid to ask whatever questions are on your mind. They are the doctors but WE are the parents. Even now when I see Dr. Betz, I always have one or two questions for him if I don't understand why he is doing something a certain way. Most good orthos will not mind at all but rather appreciate a parent who is so involved and informed.

MJB, I wish you all the best - and keep us posted,

[Pooka1]

He just always says "we are not the doctors" and if Dr. Rivard thought that being out of the brace for more than 2 hours at once was ok, then he would've said so.... I will tell him that there are other people that wear the spinecor brace that make exceptions and he says that he would prefer to go with what the doctor has said. It's frustrating because it even makes it hard to do fun outings that involve swimming.

One day I had her out of it for 3 hours for dancing pictures and he was calling me at the studio and was quite disappointed in me.

I would bet my bottom dollar Dr. Rivard has NO DATA showing that 2 hours is okay and 24 hours is not okay in terms of outcome.

He pulled the number out of a bodily orifice. Ask him next time you see him. Because your husband doesn't understand this, he isn't making an informed decision w.r.t. your daughter though he thinks his position is informed. I think Rivard will admit he has no data and made the number up out of thin air.

If I was dealing with that, I would have my husband talk to the doctor.

[Pooka1]

Variables, constants, and publishing data

Dr. Rivard is engaged in trying to show that his brace, Spinecor, is efficacious.

The way to prove that is to publish in the refereed medical journals with clear results.

The way to have the clearest results is to hold as many things constant as you can.

In this case, Dr. Rivard has decided on a protocol that includes 22 hours a day in brace. This is almost certainly ARBITRARY at this early time in the research on Spinecor. If he doesn't stress this to parents then he risks muddying his data. So he tells them 22 hours a day and lets them think less per day, or a day or two out of brace, will matter in the end. I doubt he actually utters those words (unless he is a nutball and I don't think he is). Still he will have to get a feel for compliance rate and report that as a caveat to the protocol.

So the 22 hours per day figure is not based on any data but is important in evaluating the protocol. Twenty years from now it might become clear that only wearing it 12 hours a day is just as effective as wearing it 22 hours per day. I don't know and neither does Dr. Rivard.

The bottom line is the 2 hours out of brace is just a number that Rivard picked that is untethered by any data showing that it is at all relevant to a positive outcome. Given that, being strict about not taking a child out of brace for a day or two for an x-ray or a few days for a vacation is not rational.

Doctors know best about what they know. They do NOT know best when they are doing research to figure out what is best and trying to standardize the protocol where they can. That is an important distinction that some folks apparently miss.

In my opinion, a child's well-being is more important than Rivard's resume.

On the other hand, if he was PAYING folks to participate rather than the other way around, things might be different. But he is not paying folks but rather charging them A LOT. In that case, when there is no data, the parent should use their best judgment and not pretend the doctor knows stuff he doesn't know.

[mariaf]

Well said, Sharon.

I have never heard any ortho ever say that allowing a child to be out of brace once in a while, say for a special occasion, is going to be detrimental in the long run. But more importantly, that theory just doesn't make sense - if you have a child braced 20-22 hours a day EVERY day and you give them a few extra hours over the course of a year, what is that percentage-wise? A VERY small percentage of time.

Even when David was braced full time by our former ortho (who was quite pro-bracing) she did say that on occasion I could allow David extra time out of the brace so long as it did not become a habit and that it would not alter the ultimate outcome.

To think otherwise, I agree, is not rational.

[MJB]

Hi MJB,

I'm relieved and very glad that you understood I meant no harm, but rather my intent was exactly the the opposite.

Perhaps when you feel the time is right, you can have a talk with him (I'm sure you have tried before), but have him read here or elsewhere about the protocol for out-of-brace x-rays and the 24 hour period being quite standard and how in the grand scheme of things that one "timeout" won't harm her. I don't know if you have a doctor in mind that you would bring her to for an out-of-brace x-ray but if you do, then perhaps he or she could explain as well how they have all these kids take their braces off for 24 hours prior to x-ray and it does no harm.

Absent that, I guess just try to keep an eye on her - maybe not as good or as accurate as an x-ray but moms often can "see" when something is off or wrong. Look at her both when she is wearing the brace and when she's not. If she looks like she might be progressing to you, then you know it'll be time to take action.

By the way, and maybe someone else can answer this, but has anyone ever asked Dr. Rivard if an OCCASIONAL out-of-brace xray with no brace for 24 hours would cause harm in his opinion? He sounds like a good guy and a reasonable man so perhaps he'd agree to it if it puts a parent's mind at ease. Just curious if the topic has ever been discussed with him.

I've learned that sometimes it is a good thing to question doctors. Even among themselves there is not always agreement on treatment options and sometimes as the parents we need to weigh in.

My son had been seeing an ortho with a very good reputation in NY but she was very conservative and only believed in bracing or rods (fusion or growth rods). She did not embrace VBS when I mentioned it five years ago because she felt it was too new. I felt I needed to find a better alternative than her plan to "brace David for his entire childhood and then probably fuse him anyway". So I spoke with other doctors, then with parents of kids who had VBS, then I read whatever info was out there at the time and my husband decided that while there were no guarantees, we'd go ahead with VBS as it made more sense to us - both in the treatment of his scoliosis and for his quality of life.

Now I am NOT comparing your situation to mine because this is the plan you have chosen NOR am I questioning that plan. I'm simply saying that you should NOT be afraid to ask whatever questions are on your mind. They are the doctors but WE are the parents. Even now when I see Dr. Betz, I always have one or two questions for him if I don't understand why he is doing something a certain way. Most good orthos will not mind at all but rather appreciate a parent who is so involved and informed.

MJB, I wish you all the best - and keep us posted,

You make a good point, when we go back to Dr. Rivard I am going to question him on having an out of brace and her being out for 24 hours. Last time I asked him if he would do one but he said not for 2 years.

[Pooka1]

I think the issue here is overestimating what Rivard knows. I can understand how a parent who is unfamiliar with how research is done might misunderstand instructions from a doctor particularly in reference to a relatively new approach like Spinecor and think it's all based on hard data. In fact very, very, very, very, little of what Rivard tells folks can possibility be based on hard data because he doesn't have much but is gathering some.

I hope MJB's husband can see this point for the sake of his daughter. There is nothing MAGIC about 22 hours. There is nothing MAGIC about avoiding being out of brace for a day or two. All you have to do is imagine that you started the bracing a week later. This seems obvious.

I am also getting the impression that MJB's husband might think the brace is guaranteed to work if they follow the instructions to the letter. I really hope someone disabuses him of that if he thinks that.

Last, this stage of the Spinecor research seems more akin to a clinical trial. He really should be providing the brace free until he shows it is effective. I'm a bit morally outraged that not only does he not provide it free but charges an arm and a leg for it. So desperate folks are essentially taking a chance and funding his research on this. I find that somewhat offensive but that's just the hair pin I am.

[MJB]

I would bet my bottom dollar Dr. Rivard has NO DATA showing that 2 hours is okay and 24 hours is not okay in terms of outcome.

He pulled the number out of a bodily orifice. Ask him next time you see him. Because your husband doesn't understand this, he isn't making an informed decision w.r.t. your daughter though he thinks his position is informed. I think Rivard will admit he has no data and made the number up out of thin air.

If I was dealing with that, I would have my husband talk to the doctor.

I guess my hubby is just going by when I asked about swimming and considering it "in brace" time and Dr. Rivard and Dr. Coillard said no, she could not go longer than 2 hours at any given time. So now my H is worried about that, I guess i understand where he is coming from but I feel like there has to be times that you bend the rules a little, like when you are at a waterpark or something.

[Pooka1]

I guess my hubby is just going by when I asked about swimming and considering it "in brace" time and Dr. Rivard and Dr. Coillard said no, she could not go longer than 2 hours at any given time. So now my H is worried about that, I guess i understand where he is coming from but I feel like there has to be times that you bend the rules a little, like when you are at a waterpark or something.

Yes but it seems that your husband thinks the reason to avoid being out of brace more than 2 hours a day is because there is HARD DATA SHOWING it will have a deleterious effect on outcome. There is no data, soft or hard, showing that to my knowledge. It is an arbitrary number and I think if you buttonhole Rivard he will admit it.

Does your husband understand that the ACTUAL reason Rivard and Coillard said to stick to the 22 hours per day is so they can publish their data more easily???

[MJB]

Yes but it seems that your husband thinks the reason to avoid being out of brace more than 2 hours a day is because there is HARD DATA SHOWING it will have a deleterious effect on outcome. There is no data, soft or hard, showing that to my knowledge. It is an arbitrary number and I think if you buttonhole Rivard he will admit it.

Does your husband understand that the ACTUAL reason Rivard and Coillard said to stick to the 22 hours per day is so they can publish their data more easily???

no I understand what you mean... like to me, what will an extra hour do if we are out swimming, when it takes like 24 hours for the curve to be accurate, if that's even true? I guess he just feels that Dr. Rivard is the Dr. and I am not, so he would rather just go with his medical advice.

[Pooka1]

I see what you are saying but I disagree with calling what Rivard is telling you on this matter

"medical advice."

That is not medical advice. It is more accurately described as

"picking an arbitrary number so we can standardize the protocol so we can publish our data and add to our resume."

Rivard will admit this I'm sure. If he admits this in front of your husband then I think you and your daughter will have an easier time with the brace at no known cost to a positive outcome.

Good luck.

[MJB]

I see what you are saying but I disagree with calling what Rivard is telling you on this matter

"medical advice."

That is not medical advice. It is more accurately described as

"picking an arbitrary number so we can standardize the protocol so we can publish our data and add to our resume."

Rivard will admit this I'm sure. If he admits this in front of your husband then I think you and your daughter will have an easier time with the brace at no known cost to a positive outcome.

Good luck.

I don't know, I will not be able to convince my H that our daughters doctors advice is not medical advice. He figures that Dr. Rivard knows way more than we do, people that didn't know anything about Scoliosis until January of this year.

I am not sure that I can go to Dr. Rivard and question him in these ways without coming across harsh, Dr. Rivard has been amazing to us, if I have any questions I just e-mail him and guaranteed within 30 minutes he calls me on the phone. I guess I will just take his advice for now because I don't think he or my H would appreciate me questioning him. I mean I do ask questions, don't get me wrong. I have e-mailed Dr. Rivard so many times with questions and he's always happy to answer and quick to respond.

I guess we will get through this summer being strict and then when we have our visit next year (after our October visit) that will be around April I would think, I will see if he will give us more freedom during next summer.

I do appreciate all your advice though, so please don't take my response the wrong way.