spinecor

[CAmomof2]

Christine,
Congratulations on the wonderful news!!! Better than any lottery! Stacy

[Pooka1]

That's probably the largest decrease of a curve I have read about yet outside of surgery.

Congratulations!

[leahdragonfly]

Curve 1 degree!

Wow, you must be so happy about the one degree report! Was that in-brace or out-of-brace? Does that mean your daughter gets to throw away the brace, or is she too close to the pre-adolescent growth spurt (sorry, I'm not familiar with the spinecor protocols)?

Congratulations,

[emarismom]

Christine,

That is AMAZING!! Congratulations!

[mariaf]

Congratulations Christine!!

I, too, was wondering if this means no more brace - or a reduction in hours. I mean one degree is not only amazing, but it isn't even considered scoliosis!!!

[christine2]

The x rays are in brace. I don't anticipate an out of brace x ray at all. From what I understand the in brace will be the same as the out of brace. I don't know what the scoliometer reading started at. That was over 2 years ago and I had no idea of the importance of it. We are going to keep her in brace straight thru to puberty (perhaps a bit more relaxed about it until her growth spurt). My daughter has no problem wearing it so we are not going to mess with success right now. I am anticipating the curve increasing during her growth sput. My goal is to keep it below 20.

[2kids]

Christine,
Congratualtions on the tremendous results for your daughter!

You said the in-brace and out of brace x-rays would be the same with spinecor. Why? Is there something different about the spinecor brace that the curve holds with the same measurement in or out?

Just wondering how it works.

-Brenda

[christine2]

I am not 100% sure of the reasoning behind the in/out of brace x rays. My understanding is that because it is a 3 dimensional, dynamic brace the muscles around the corrected curve are able to stenghthen and therefore hold the correction. With some of the braces the muscles actually atrophy.

Perhaps someone else can shed some more light on this subject.

[mariaf]

My understanding is that because it is a 3 dimensional, dynamic brace the muscles around the corrected curve are able to stenghthen and therefore hold the correction.

Thanks for that additional information, Christine.

I guess what some of us are still trying to understand is - even if the muscles "in theory" are supposed to strengthen enough to hold any correction, wouldn't an occasional out-of-brace x-ray (just to be sure that this in fact was happening for a particular patient) make sense?

For example, with VBS the staples "in theory" should hold any correction over time. But x-rays are still performed because as we all know, with ANY form of treatment, there is never a 100% success rate - and the doctors would want to catch those few cases (those that might progress regardless of any treatment) sooner rather than later.

I'm sure that in your daughter's case, with such a small (non-existent!) curve, it would be very UNlikely for her to progress - but I'm talking in general and about larger curves. Perhaps, as you say, someone else can shed more light on this. I'm sure those parents who have experience with the Spinecor would probably understand it better than I do - and I would really love to understand how it works.

Thanks.

[jillw]

MJB, How did things go at the appointment last week?

Christine, that's interesting about the in brace and out of brace curve being the same. My understanding had been to expect a higher out of brace curve than in brace - maybe it's different because your daughter has been braced for the full 2 years they say is required at a minimum?
My understanding was that with hard braces, in most cases whatever correction was obtained in brace goes away over time once brace wearing is stopped. Therefore a "success" would be anyone whose curve after a year or so out of brace is within 5 degrees of the initial pre-brace curve. With spinecor, the same parameters are also considered a success, but they have been finding that additionally, there have been people who after a full 2 years out of brace had been maintaining a correction. Not everyone, but enough to give us all hope!

Also, I wanted to comment on the Dr. Wong study that was discussed earlier. When I was in Montreal I asked Dr. Rivard about it (and actually more about the rebuttal which to me seemed to have some valid points but to be a little over the top in other areas). Too summarize, when preparing research for publication, the researchers will obviously put together the best package they can. However, when you look at the actual research report, the picture of the girl they put in spinecor shows that a major piece of the brace is missing=>The thigh bands which are important for stabilizing the brace weren't used. One wouldn't expect good results without a stabilized base. As far as some of the things in the rebuttal which suggested if you don't wear the spinecor bodysuit or if the bands aren't replaced every 6 months or so than results will suffer, Dr. Rivard doesn't agree. The bodysuit is not a part of the brace, just meant to make it easier for those who choose to wear it. Regarding replacement of straps, he feels every 6 months (and even 12) generally isn't necessary (depending on the specific case of course) and would only drive the cost of bracing up. There is more - but that's the main idea for those of you who were wondering... (keep in mind I am paraphrasing what was said to me...and while I believe I"ve got the main ideas correctly, it's not a direct quote. so caveat!)

[jillw]

I started the previous post earlier in the morning before the other posts and then got called away on phone calls and such (thankfully nsf doesn't time you out). I see the subsequent posts....

Maria, I'm not entirely sure, but I believe the reason out of brace xrays aren't regularly taken is for a couple reasons....The protocol states that it takes 2 years for the brace to complete it's cycle (many still would have to wear the brace longer based on age and years of growth, but approx. 2 years would be the minimum the brace would be worn by most in order to try and get the in brace correction to actually hold after bracing stops). In order to get an accurate out of brace xray, the child would have to go a while out of brace....don't quote me, but I think someone posted that the doctors said a full week or so would be necessary to get a meaningful measurement. it may be that since the brace is softer and engages the muscles more, that it takes longer than the 48hours protocol used for hard braces to "relax" the curve enough to get a true idea of what the out of brace xray measurement is. While we've only been a year in brace, others have posted that they did or would be getting out of brace xrays after 2 years. I suspect that they don't want the children going without a brace for a full week before the 2 years is up. in their experience a curve progression is accompanied by an in brace progression. When patients so significant in brace progression, they WILL have out of brace xrays taken. I think they are also trying to manage radiation exposure (maybe that's not their concern, but I know it's mine!) They do need in brace xrays as part of the proper fitting and knowing if it's holding the spine in the position they want. I don't think that 2 sets of xrays every 5 months would be ideal - especially since they also seem to get many of the JIS patients who are facing way more years of xrays than AIS kids. Just my theory based upon patching together things I've read, been told by the drs., heard that others were told by the doctors. I am not an expert!!!!!!! But next time I'll ask that question specifically.

I think that the issue of getting periodic out of brace xrays might be more critical for those with larger curves and/or for those who would change their course of treatment. In other words, if somebody plans to continue to use spinecor even the curve is progressing and until fusion surgery is required (with the hopes that it never is required) than knowing the exact out of brace measurement isn't as critical(which is the case for some...for example some of those with larger curves had already tried "mainstream" hard braces without success and are using spinecor as a last defense). Or if a child had relatively small curves to begin with, say 20 degrees, and is getting an inbrace correction that is pretty stable, then out of brace xrays aren't as critical. On the other hand, if somebody plans to switch from spinecor to a hard brace or other treatment BEFORE it gets to the point of fusion, then occasional out of brace xrays would be more important. ESPECIALLY if they are experiencing a trend of increasing curves in brace. In that case, it would make sense to go brace free for a couple days and get an xray for one's own knowledge and decision making progress.

Just my 2 sense.... (again, I'll ask specifically about that issue next visit...although, God willing, that won't be for a while)

[mariaf]

I think that the issue of getting periodic out of brace xrays might be more critical for those with larger curves and/or for those who would change their course of treatment. In other words, if somebody plans to continue to use spinecor even the curve is progressing and until fusion surgery is required (with the hopes that it never is required) than knowing the exact out of brace measurement isn't as critical(which is the case for some...for example some of those with larger curves had already tried "mainstream" hard braces without success and are using spinecor as a last defense). Or if a child had relatively small curves to begin with, say 20 degrees, and is getting an inbrace correction that is pretty stable, then out of brace xrays aren't as critical. On the other hand, if somebody plans to switch from spinecor to a hard brace or other treatment BEFORE it gets to the point of fusion, then occasional out of brace xrays would be more important. ESPECIALLY if they are experiencing a trend of increasing curves in brace. In that case, it would make sense to go brace free for a couple days and get an xray for one's own knowledge and decision making progress.

Thanks, Jill!!

That makes a lot of sense - I definitely can understand and agree with your statement that out-of-brace x-rays become less critical in cases where someone does not plan to change their course of treatment regardless - or in cases where the curve is relatively small.

I was actually thinking of those with larger curves, and cases where, as you say, one may consider taking other action should an out-of-brace x-ray indicate progression. As you stated, there are times when knowing what the out-of-brace x-ray showed might play a role in the decision-making process.

To state the obvious - it's always best to catch progression early. For example, in a case that is progressing towards fusion levels, one would prefer having fusion before the curve reaches the 50's or 60's where correction would be more difficult.

I'm sure the doctors take all this into consideration and monitor each child accordingly. As in all things, common sense plays a role I'm sure.

And I CERTAINLY agree with you about limiting radiation exposure whenever possible!

[christine2]

Thanks Jillw

Well said. I would also like to make it clear that the docs in Montreal are very open and honest with parents about the abilitys of the Spinecor. They will be the first to say the the brace works best on young, small curves.

[RugbyLaura]

To state the obvious - it's always best to catch progression early. For example, in a case that is progressing towards fusion levels, one would prefer having fusion before the curve reaches the 50's or 60's where correction would be more difficult.

For anyone who's not 'heard' me say this before...

Imogen's consultant was very upfront with us regarding the likelihood of her progressing to surgery (statistically not far off 100%). His main motivation for using Spinecor is to maintain flexibilty of the spine. He believes that rigid braces actually encourage the curve to become fixed therefore making surgical correction more difficult. He said that he would be happy (Ok, bad choice of word, but he used it!) for her curve to get into the 60s or even 70s before he operates, just as long as it remains flexible thus enabling him to achieve a good correction. He believes it to be very important that she is as close to fully grown as possible before he operates.

I still find it hard to understand why people are so hung up about out of brace xrays. The children are wearing the brace for 20 hours a day. What the curve would do without it is irrelevant. How long would you leave it off? 5 hours, 3 days, 2 weeks, 6 months??

I trust our consultant to do the right thing for Imogen and feel very fortunate - to be constantly doubting and worrying must be awful!

[Pooka1]

The protocol states that it takes 2 years for the brace to complete it's cycle

Does the protocol state what this is based on??

sharon