spinecor

[Pooka1]

I totally agree Sharon, if my hubby did anything that I felt was wrong for my children I would be down on him like a ton of bricks.

My point was that I really don't consider the out of brace xray to be worth the argument. I don't think it will be a source of meaningful information & is just more exposure to radiation.

That's a reasonable point. I don't have a bead on this question of out-of-brace versus in-brace x-ray. What is the state of the data relating the in-brace to the out of brace curvature? Do we know 24-48 hours is even enough? It seems like the recently out-of-brace is measuring "something" and the in-brace is measuring "something" but it isn't clear which one, if either, is related to the final outcome. They can't even relate unbraced to final outcome so I doubt either of those x-rays can be related to final outcome. It could very well turn out that somehow the in-brace numbers are a better predictor of the final outcome. Who knows?

I would not be worried about the additional time out of brace, I just think it's a pointless exercise. I agree with you that the prescribed hours out of brace appear to be fairly arbitrary. There have not been enough (if any?) studies to pin it down, we therefore take them with a pinch of salt & make the brace fit our way of life rather than the other way around

I suspect the limits on out-of-brace time are more related to staying used to the brace and avoiding multiple break-in periods than they are in terms of influencing outcome.

I mean when you add up the total number of in-brace hours and then look at relatively small numbers of out-of-brace hours in that time period, it is hard to imagine that could ever affect outcome. But what the hell do I know!

[RugbyLaura]

Do we know 24-48 hours is even enough? It seems like the recently out-of-brace is measuring "something" and the in-brace is measuring "something" but it isn't clear which one, if either, is related to the final outcome. They can't even relate unbraced to final outcome so I doubt either of those x-rays can be related to final outcome. It could very well turn out that somehow the in-brace numbers are a better predictor of the final outcome. Who knows?

Perfectly put Sharon. Both our consultant and orthotist did explain why out of brace xrays were a waste of time but I'm afraid I can't remember their exact words. Yours are better than anything I have been able to come up with and I think the fact that you have distance from the issue helps you be more rational. (Not that I think I'm irrational, just that others may feel I'm being influenced by my subconcious desire to bury my head in the sand)

x

[Pooka1]

My gut on this issue is that I'm keeping my daughter out of the brace for at least a week before she goes back for the next set of x-rays. Maybe two weeks.

sharon

[emarismom]

I do think that an out of brace xray is needed. There is no more exposure to radiation, because I did the out of brace xray instead of the in brace xray. I will be waiting until Sept/Oct to get another xray. That one will probably be in brace as it will be with the Spinecor doctor.

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.

Further, if there is progression, at that point the true amount of progression could be masked by the readjustment of the brace.

I have my daughter in a Spinecor, and as I have said before, I do feel it is my best option at this time to offer some sort of prevention of curve progression. However, I also feel that two years without an out of brace xray is too long.

In my case the situation is complicated as I am not able to travel to Montreal and am seeing a chiropractor for the brace. I also see my regular ortho, as I am not willing completely forgo the medical establishment. I'm trying to balance to sides that have very differing views on treatment and follow very different protocols.

[Pooka1]

Emarismom,

I think you are doing an admirable job balancing the two approaches!

That's an excellent point about the in-brace x-ray taken before the adjustment. Makes sense.

Is that the protocol? Or do they only do the in-brace after the adjustment?

What is the rationale for doing the in-brace x-raying by the way? Do they have data relating what their protocol is to eventual outcomes? Or are they still gathering data to answer this question?

In re my daughter, because she is in a bending brace, an in-brace film seems to have a high chance of being irrelevant. That's why I think I'm taking her out for at least a week before the next x-ray. It will be interesting to see what the surgeon says. Whatever he says, I'll get the rationale.

[emarismom]

I'm not sure if there is a protocol on the order of which to do things when a patient comes in for a follow up. But every time I go in, it is done in that order, check the brace (ask questions, etc), readjust the brace, take the xray. Thus we are only given the curve degree once the brace has been adjusted.

I don't know if any studies are being done in relation to the use of only in brace xrays. But dare I say, that the use of in brace xrays to determine the effectiveness of the brace does not seem appropriate. If I remember correctly, the use of out of brace xrays is irrelevant because the patient is remaining braced and progression can be recognized in both types of xrays. But again, because the the readjustment of the brace, I think progression could be masked.

I'm not sure if a week or two out of brace is necessary (although I'm sure your daughter will be thrilled!) I think I would contact the doctor and just do what he says.

[RugbyLaura]

Michelle,

Oddly enough, our xray procedure is the other way around:

Arrive
Xray
Chat & brace adjustment
Go home

I always wonder what the measurement would have been post adjustment!

Laura

[mariaf]

Hi,

I know I'm going to regret this but...

I don't understand why everyone is so hung up on this out of brace xray issue. If the curve is progressing it will show up in an inbrace xray - read back over this thread & see. As I understand it the brace is supposed to prevent progression, not correct the curve. It doesn't always work and we won't know whether it has until we come out of the other side and maybe not even then.

Sorry Maria but can't we just leave this in the hands of the medical professionals? Should I start recomending that staples are removed periodically to see whether VBS patients are 'really' stable?

I don't want to start a huge argument again but I do feel that Marlowe could do with support & reassurance rather than incitement to marital disharmony!

x

Hi Rugby Laura,

I tried VERY hard to word my post so it would sound the way I meant it - to cover all bases in the BEST INTEREST of the child, not to start any marital disharmony. I'm sorry you misintrepreted it.

The medical professionals (at least the vast majority, here in the U.S. anyway) DO FEEL THAT XRAYS WITHOUT THE BRACE FOR AT LEAST 24 HOURS ARE NECESSARY. That's not MY recommendation - it is theirs.

Comparing the staples to the Spinecor in the way you did is silly. The staples are in there permanently and kids ARE monitored to be sure everything is stable and holding. You wouldn't remove a rod from a post-fusion patient to see what their curve was, would you? But the Spinecor (or ANY brace) is not permanent but rather just something that is worn so it NEEDS to be removed in order to see how the curve truly is doing.

I personally KNOW of cases where the x-rays taken in the Spinecor were masking progression and by the time it was discovered the curves were quite large.

I guess we'll just have to agree to disagree on this one. I really was not trying to start any debates and I truly want the best for ALL these kids.

I just can't see what the harm could be in getting an out-of-brace x-ray - can you? If you can, I truly wish you would explain it to me.

[RugbyLaura]

But the Spinecor (or ANY brace) is not permanent but rather just something that is worn so it NEEDS to be removed in order to see how the body really is.

Why??

Laura

[mariaf]

Because it is NOT a part of their body. When it is removed the body will surely shift and change, no?

And I'm sure there are other reasons why nearly ALL the orthos in the U.S. only consider x-rays taken with the brace off at least 24 hours to be valid.

If you like, next time I see our ortho (Dr. Betz) I will ask for an explanation in more medical/scientific terms. But when I asked him once why he requires the brace to be off for 24 hours prior to an x-ray he said "because it takes at least that long for the spine to return to its natural shape - otherwise we could get an incorrect reading that is masking progression".

I don't know if they were his EXACT words but pretty close.

[RugbyLaura]

I tried VERY hard to word my post so it would sound the way I meant it - to cover all bases in the BEST INTEREST of the child, not to start any marital disharmony. I'm sorry you misintrepreted it.

Bound to be my fault

Comparing the staples to the Spinecor in the way you did is silly.

It was meant to be silly! I obviously was not seriously suggesting such a thing!!

I personally KNOW of cases where the x-rays taken in the Spinecor were masking progression and by the time it was discovered the curves were quite large.

Really - what do you have against Spinecor??? We are all here trying to do the best for our kids. Your way is NOT the only way.

[mariaf]

Again, you put words in my mouth.

I have NOTHING against Spinecor. I just think it is much safer to occasionally subsitute an out-of-brace x-ray for one taken IN the Spinecor. I really don't see the harm in that? Do you?

If you fail to see that my intentions are good (i.e., making suggestions to help others, just like we all do), then I don't know what to say to convince you - in fact, I won't even try. As a matter of fact, I have no problem posting something that may bring some heat on myself if I think I can help even one child. I'm pretty thick-skinned.

I believe, though, that I am allowed to post MY opinions which, believe it or not, are based on a LOT of research, reading, talking to those in the medical profession, following a large number of scoli kids, talking to their parents about their experiences, etc.

I am NOT saying that I know any more than the next person - but I won't stop trying to share what I have learned either.

I would hope that everyone would do the same.

[emarismom]

Laura,

That is really interesting that your doctor does it differently. I guess that for every doctor out there, there is a little variation. Just like every doctor will have a different opinion. It really is just a personal decision as to what the best way to care for our children is.

I have done ALOT of research over the past several years and there is no RIGHT treatment for scoliosis. There are many options and ideas about things we can do to help our kids. Those range from nothing to yoga to staples and everything in between. We as parents have to look at our UNIQUE situation and make determinations based on that. What is right or appropriate for one, is NOT necessarily what is right or appropriate for another.

As odd as what I'm about to say may sound, I find solace in knowing that fusion surgery is available for my daughter should that be the end result of all of this. My daughter has a condition, that at least there is something out there that can resolve it. The condition that caused her scoli is 10 times worse than the scoli, and at this point it appears to be resolved. There are a great many children with conditions for which there is nothing that can be done.

[Pooka1]

As odd as what I'm about to say may sound, I find solace in knowing that fusion surgery is available for my daughter should that be the end result of all of this. My daughter has a condition, that at least there is something out there that can resolve it. The condition that caused her scoli is 10 times worse than the scoli, and at this point it appears to be resolved. There are a great many children with conditions for which there is nothing that can be done.

Exactly so. Fusion gave my daughter's life back to her from becoming an ever-increasing pretzel. We are lucky there is a successful procedure out there for these children. It could be worse. A lot worse.

[MJB]

Hi MJB,

Please don't take this the wrong way, but as her mom, if you feel it is in your daughter's best interests to get an out-of-brace x-ray, then perhaps you need to consider going against her dad's wishes and put your daughter's best interest ahead of what HE wants. Isn't that (what's best for her) what should come first?

Again, I apologize - I am not trying to chastise you or give you a hard time - and I tried to find the words to say this as gently as possible - but I am thinking of your daughter here and what is best for her. If it were my child, I would do what I thought was best for HER and let the chips fall where they may.

Good luck and I truly hope you don't mind my candor.

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!