Doctors wait too long to brace for JIS?

[Dingo]

From what I read online many doctors won't brace a Juvenile curve until it reaches 25 degrees. However research has shown that curves less than 20 degrees at puberty are associated with a very low risk of fusion.

From the study link
Curves less than 20 degrees at puberty progressed to fusion in 15% of cases.
Curves that measured 21 to 30 degrees were fused in 75% of cases.
Curves over 30 degrees were fused in 100% of cases.

Why are doctors waiting to brace until after a curve is 25 degrees and has a 75% chance of fusion?

In addition take a look at how a brace is constructed.

Scroll to page 16 for a great photo. Every brace is different but they all operate on force. The larger the curve is the more the brace has to push to achieve correction. Wouldn't you guess that a brace designed for a 15 degree curve would be several times more comfortable than a brace designed for a 25 degree curve? No brace is particularly comfortable but a smaller curve requires less force to correct and is probably more pleasant to sleep in.

And finally Some research and plenty of anecdotal stories on this board suggest that bracing a Juvenile can permanently improve a curve.

Another positive aspect of nighttime bracing involves an aesthetic consideration: because the patient does not need to wear the brace during the daytime, it has less of an impact on his or her everyday life. Feeling less constrained and inconvenienced by their treatment than he or she might with a full-time brace, the patient may be more likely to achieve a higher degree of compliance. This, in turn, helps boost the chances of success.

In the case of juvenile scoliosis, orthotists can take advantage of the tendency of younger children to sleep more hours than their teenaged counterparts. An ongoing study involving 60 patients with juvenile scoliosis (aged 3.5 years to 9.5 years) indicates an average in-brace correction of 101% for major curves, and 96% for compensatory curves. The average curve improved by five degrees in all treated patients.

This study also revealed that more than one third of the participants improved to the point that they were able to spend time (up to a couple of years) out of the brace.

[hope404]

Dingo..amen!!!

Dingo, Amen to that...

Always wondered, once my daughter was diagnosed, what the heck we were told to wait for????

Once the feed forward mechanism of scoliosis kicks into gear, good luck stopping it.

Hmmm... massive rotation..lateral flexion..compression..sound like smart things to wait for.

[hope404]

But

But, to brace a child for years ..until all growth has stopped UGH !!!

unfortunately, to me, waiting or bracing, NEITHER are great options

[Pooka1]

From what I read online many doctors won't brace a Juvenile curve until it reaches 25 degrees.

There is a good reason for that. Do you know why they do this?

However research has shown that curves less than 20 degrees at puberty are associated with a very low risk of fusion.

From the study link
Curves less than 20 degrees at puberty progressed to fusion in 15% of cases.
Curves that measured 21 to 30 degrees were fused in 75% of cases.
Curves over 30 degrees were fused in 100% of cases.

Why are doctors waiting to brace until after a curve is 25 degrees and has a 75% chance of fusion?

Because there is no good evidence that the curves that didn't progress were stopped by bracing and that the curves that did progress were halted by bracing. FULL STOP

In addition take a look at how a brace is constructed.

Scroll to page 16 for a great photo. Every brace is different but they all operate on force. The larger the curve is the more the brace has to push to achieve correction. Wouldn't you guess that a brace designed for a 15 degree curve would be several times more comfortable than a brace designed for a 25 degree curve? No brace is particularly comfortable but a smaller curve requires less force to correct and is probably more pleasant to sleep in.

Some large percentage of 15* curves won't progress anyway. Why make a kid wear a brace if the curve is not likely to progress?

And finally Some research and plenty of anecdotal stories on this board suggest that bracing a Juvenile can permanently improve a curve.

Why the doubt among the experts then?

[Dingo]

Pooka1

I agree that bracing for years sounds dreadful. But if a small curve is progressing I believe doctors should brace long before it hits 25 degrees.

If bracing isn't effective why prescribe it at 25 degrees?

[Dingo]

Bracing

hope404

But, to brace a child for years ..until all growth has stopped UGH !!!

unfortunately, to me, waiting or bracing, NEITHER are great options

I agree.

But 10 years of night bracing is a lot better than being self conscious and living through 50 years of back pain.

Of course this assumes that bracing works. But if it doesn't work why do doctors prescribe it at all?

[Pooka1]

Pooka1

If bracing isn't effective why prescribe it at 25 degrees?

Because the only alternative presently is experimental non-fusion surgery for the JIS crowd and some folks want to do something short of experimental surgery and hope it works.

If I had a JIS kid, I would go with the experimental surgery over years of bracing (no question in my mind whatsoever) but that's just me.

[Pooka1]

Of course this assumes that bracing works. But if it doesn't work why do doctors prescribe it at all?

I'm guessing they are hopeful there is some subset of kids for which it will work.

Again, we don't know that bracing doesn't work. It certainly might work for some kids. Unfortunately, if that's the case, nobody has yet shown it rigorously. And bracing is too extreme compared to surgery in my opinion. Even if it can be shown to work in some cases, I would still consider surgery over even effective bracing if it is likely to produce a more definitive treatment and a less uncertain future.

My fused daughter is done with scoliosis. My braced daughter has a very uncertain future even if the brace "works." Night and day.

[leahdragonfly]

when to brace JIS

Hi Dingo,

I'm not sure where you got your data about most orthos waiting to brace JIS kids until their curves are over 25 degrees. If you read the SRS Bracing Manual and SRS Guidelines, they clearly say that children who are Risser 0-1 with curves equal to/greater than 20 degrees are recommended for bracing. Further, the guidelines go on to say that juveniles with curves of 15 degrees or greater that have shown progression are recommended for bracing.

Also, there are published studies that show about 70% of JIS cases progress, and 30% don't. I really doubt orthos have any nefarious motives for waiting to brace a young child until such point that it becomes clearly needed. I have read at least one published study where the data suggests that a staggering 70% of children braced for scoliosis wouldn't have progressed anyway. As an adult who wore a Boston brace for two years as an adolescent, this bothers me terribly! Unless you have personally worn a brace, it is impossible to truly understand what it is like. This is just one reason some of us are looking for alternatives to upwards of 9-10 years of bracing for our young JIS children.

p.s. I guess my spine never read the study that showed 100% of children with curves over 30 degrees at adolescence would go on to fusion surgery! I was diagnosed with AIS and had a double curve of 33L/32T. I avoided fusion for scoliosis, but now have a 36-degree lumbar curve and very significant degenerative arthritis in my spine. If I had been able to choose bracing or fusion as a child, I wouldn't have chosen bracing.

Take care,

[Pooka1]

Hi Dingo,

I'm not sure where you got your data about most orthos waiting to brace JIS kids until their curves are over 25 degrees. If you read the SRS Bracing Manual and SRS Guidelines, they clearly say that children who are Risser 0-1 with curves equal to/greater than 20 degrees are recommended for bracing. Further, the guidelines go on to say that juveniles with curves of 15 degrees or greater that have shown progression are recommended for bracing.

Also, there are published studies that show about 70% of JIS cases progress, and 30% don't. I really doubt orthos have any nefarious motives for waiting to brace a young child until such point that it becomes clearly needed. I have read at least one published study where the data suggests that a staggering 70% of children braced for scoliosis wouldn't have progressed anyway. As an adult who wore a Boston brace for two years as an adolescent, this bothers me terribly! Unless you have personally worn a brace, it is impossible to truly understand what it is like. This is just one reason some of us are looking for alternatives to upwards of 9-10 years of bracing for our young JIS children.

p.s. I guess my spine never read the study that showed 100% of children with curves over 30 degrees at adolescence would go on to fusion surgery! I was diagnosed with AIS and had a double curve of 33L/32T. I avoided fusion for scoliosis, but now have a 36-degree lumbar curve and very significant degenerative arthritis in my spine. If I had been able to choose bracing or fusion as a child, I wouldn't have chosen bracing.

Take care,

Excellent post, Gayle.

In re your last line, I think the time is drawing to a close when it was a rational decision not to be fused. I think it was rational to avoid fusion with the pre-modern hardware. With the new hardware, and what may or may not be the case about surgery down the line even if bracing works, I suspect bracing will decrease and most kids will be fused when they become eligible.

I don't know why our surgeon seems to think my fused daughter is back in the general population for back issues but he must have some reason to suspect it. I think it maps to the new hardware and her being done at the earliest possible time. I'll ask him this fall when I see him again.

[jillw]

Gayle, just to clarify, the study dingo was referring to pertained to JIS not AIS. They looked at children who were diagnosed with JIS and then looked at the size of the curve, not at diagnosis, but as they were entering their peak velocity growth. The stats in that study shows what ultimately happened. With AIS, it is generally the onset of peak velocity growth that brings on the scoliotic curve - in other words with AIS the kids are entering peak velocity growth without a curve - so AIS children are entering peak velocity growth in the below 20 degree curve category-technically below 10 degrees. (for the most part. as discussed elsewhere there is always the chance that a curve might have been undiagnosed and an AIS child might technically have JIS-for example Pam and her doctor have come to the conclusion that she probably had JIS)

[jillw]

Sharon, I like to hear what your surgeon says regarding your daughter being back in the general population. I would like to think that is true and that newer instrumentation provides better results than what they were using several decades ago. However, I haven't been able to find any scientific evidence or studies for this - could you point me in the right direction?

And a general question for anyone out there who knows: I have frequently read in these boards about how much better instrumentation is today compared to days of old (Harrington rods? other rods also?). How long have these "newer" instrumentation options been around? Have the early recipients of it had it for a couple decades or more yet so we can see the long term results?

Just curious - I haven't researched fusion a whole lot yet (we're so early in this scoliosis journey), so I'd love to learn from those of you who have.

[Pooka1]

Sharon, I like to hear what your surgeon says regarding your daughter being back in the general population. I would like to think that is true and that newer instrumentation provides better results than what they were using several decades ago. However, I haven't been able to find any scientific evidence or studies for this - could you point me in the right direction?

All I have at present is his comment. It came up when I asked if she will need surgery in the future to extend or revise the fusion and he said she will not (assuming a good fusion) and used the phrase "one-stop shopping" for surgery for her. He went on to say that she was not predisposed to back issues over and above an unfused person.

Here's what I wrote right after the 7.5 month visit... this will be more correct than anything I write now if it differs...

http://www.scoliosis.org/forum/showthread.php?t=8002

Note that that means she has an 85% chance of having back problems like the rest of us per that reference Linda posted. I don't have scoliosis and have had back problems including a naturally-fused level in my lumbar which is very likely a riding injury (repetitive, not catastrophic). And there are days when it feels like it is propagating elsewhere in my lumber.

And a general question for anyone out there who knows: I have frequently read in these boards about how much better instrumentation is today compared to days of old (Harrington rods? other rods also?). How long have these "newer" instrumentation options been around? Have the early recipients of it had it for a couple decades or more yet so we can see the long term results?

It's a good question.

I am guessing that since a certain percentage of Harrington rod patients have no problems, they are extrapolating from that to what is the likely average scenario given the better hardware. I really don't know but got the distinct impression he feels if the fusion ends at L1 or above, he really really REALLY doesn't expect the kid to ever need an extension or revision. Like the bottom of the fusion is some type of master variable/predictor for future surgery. I would like to see the evidence for it though despite his certainty.

Just curious - I haven't researched fusion a whole lot yet (we're so early in this scoliosis journey), so I'd love to learn from those of you who have.

I would also.

[Pooka1]

p.s. I guess my spine never read the study that showed 100% of children with curves over 30 degrees at adolescence would go on to fusion surgery!

Do you mean at maturity? If so, can you please give me that citation? I want to show it to our surgeon. He claims few people with a curve <50% at maturity will ever progress in their lifetime.

Based on the testimonials here, I think at least some or at least more than a few progress despite being <50* at maturity.

Thanks in advance.

[mmm2001]

I think that the data from the JIS article is interesting but there is info missing and results can be interpreted in different ways...

1. The institution had 444 cases of JIS, only half were used. it was unclear to me why the other half were excluded. I assume missing data?

2. They braced kids >20 (not >25)... so the 75% progression in the 21-30 degree group was in spite of bracing. The 15% progression in the <20 degree group was in spite of NOT bracing. Personally, if someone told me my child had only a 15% risk of progression, I would not put them in an orthotic for 6-9 years to avoid something that would not occur 85% of the time anyway.

3. When you do an OVID search of juvenile scoliosis, only 39 articles are returned, many of which are case reports or only tangentially related to JIS, not very impressive numbers on the research front.

4. Imagine how many kids out there have curves (especially under 20 degrees or so), that are simply unrecognized and never go on to progress. Not all kids go to docs, and not all docs check for scoli in 7 year olds. Of course some of the AIS is JIS unrecognized as well. The point is, we don't know for sure what to make of very small curves in young children, and the treatment is not exactly benign.

Just some thoughts.

Lisa