New Here, Facing Long Fusion

[Pooka1]

Are people still being told that?

I was and I don't think bracing can be justified in the 25* to 50* range if that wasn't the paradigm. So based just on the bracing range, I would say that is the prevailing paradigm.

The claim as I understand it is if you can keep a curve below 50* at maturity you will likely not see progression enough to warrant fusion for progression in a normal lifetime. Maybe other parents can comment. That was the target while my one kid was braced. In fact it is the only number I had in my head that entire time.

But, even when he was diagnosed at 35 degrees, we were told that he would likely continue to show some progression through his adult years but that they didn't expect him to progress into the surgical range.

Yes this and up to 50* is the paradigm I am claiming is out there.

I don't think even fused teenagers can be promised that they'll avoid surgery for life.

No surgeon is promising anything. All they can go with is the published odds (and their own odds). They can also state if no case of something exists to their knowledge. Saying something like that won't happen might come closest to a promise but still isn't one.

IMO, once you're over 30 degrees and unfused, or at any degree but fused, I think you're looking at a big chance of having spinal surgery in your adult years. So, I'd almost say "Once you pass the 30 degree threshold (whether you get fused or not) you have a high chance of facing surgery/more surgery in your future."

That doesn't hold too well for T fusions even with H rods. Those are holding up in the out years for the most part per Linda.

[hdugger]

I was and I don't think bracing can be justified in the 25* to 50* range if that wasn't the paradigm. So based just on the bracing range, I would say that is the prevailing paradigm.

Do they brace adolescents who present close to 50 degrees? I always thought of bracing as being offered to kids in the 25 to 35 degree range, although they *kept* them in brace even if they went above that.

We certainly got a very different vibe from our doc between when my son was diagnosed at 35 degrees and when he progressed to 47 degrees 6 months later. In the first visit, we had a sense that we were off the hook because he had a "small enough" curve at almost maturity. By the next visit, although the doc still didn't feel like he was in surgical range (his cutoff was 60 degrees), he talked more about "enjoy your years in college" and then some about how far he could progress without serious organ damage. We never got the sense, once he was over 35 degrees, that he was *permanently* avoiding surgery. I think the sense was that it was a crapshoot after that - you might avoid it and you might not, so have fun while you could.

[Pooka1]

Do they brace adolescents who present close to 50 degrees? I always thought of bracing as being offered to kids in the 25 to 35 degree range, although they *kept* them in brace even if they went above that.

I'll let other parents answer that but I think we have seen just recently a surgeon brace a kid in the 40s*. So I think the paradigm is out there still.

The treatment window is ~20* or 25* to ~50* per everything I recall hearing and reading. If the treatment window was instead ~20* or 25* to ~35* then we wouldn't see so much bracing. That was my point... it wouldn't be justified if the actual threshold where bracing won't likely work is ~35* and not 50*. Or at least the natural progression seems to have a threshold at ~30* apart from the bracing efficacy question.

We certainly got a very different vibe from our doc between when my son was diagnosed at 35 degrees and when he progressed to 47 degrees 6 months later. In the first visit, we had a sense that we were off the hook because he had a "small enough" curve at almost maturity. By the next visit, although the doc still didn't feel like he was in surgical range (his cutoff was 60 degrees), he talked more about "enjoy your years in college" and then some about how far he could progress without serious organ damage. We never got the sense, once he was over 35 degrees, that he was *permanently* avoiding surgery. I think the sense was that it was a crapshoot after that - you might avoid it and you might not, so have fun while you could.

Can't speak to your sense other than to say my sense from talking to the surgeon was incorrect at first and I had to subsequently get it clarified. I just know there wouldn't be a single reason for my kid to wear the brace after she passed 35* if your sense is correct for the same reason there is not a single reason why they don't brace kids over 50*. How is it different?

[hdugger]

The treatment window is ~20* or 25* to ~50* per everything I recall hearing and reading. If the treatment window was instead ~20* or 25* to ~35* then we wouldn't see so much bracing. That was my point... it wouldn't be justified if the actual threshold where bracing won't likely work is ~35* and not 50*. Or at least the natural progression seems to have a threshold at ~30* apart from the bracing efficacy question.

I'm drawing a distinction between *starting* treatment at over 35 degrees and *continuing* treatment at over 35. I think the first is somewhat uncommon, but I'm no expert on bracing.

Can't speak to your sense other than to say my sense from talking to the surgeon was incorrect at first and I had to subsequently get it clarified. I just know there wouldn't be a single reason for my kid to wear the brace after she passed 35* if your sense is correct for the same reason there is not a single reason why they don't brace kids over 50*. How is it different?

Well, I think the reason they don't brace kids over 50 is that simply being over 50 degrees *while still growing* is a surgical trigger.

However, being over 50 as an adult is *not* a surgical trigger. Depending on which doctor one chooses, you also have to be 1) progressing, 2) in pain, or 3) both.

So, if my son had advanced the 12 degrees (from 35 to 47) and my doctor had suspected he had any chance of having any significant growth remaining, he probably would have been recommended for surgery. It's only that the doctor was (mistakenly, it turned out) pretty sure that he had stopped growing that kept him off the surgical table at 18.

That's a completely different assessment from from his (now adult and stable-ish) curve of around 55. Noone is demanding that he have surgery - they're ready to release him for 5 years *because they can't tell how much he'll progress.*

You don't fuse kids to keep them from having surgery as an adult. You fuse them to keep their curve from getting substantially bigger in a small amount of time. OTOH, you fuse adults because they're in pain. Totally different decision processes. That's why there was no decision involved in sending your daughters' to surgery, while there *is* a decision involved in sending my son.

[Pooka1]

I'm drawing a distinction between *starting* treatment at over 35 degrees and *continuing* treatment at over 35. I think the first is somewhat uncommon, but I'm no expert on bracing.

I don't think that distinction exists in the real world. Or at least I haven't encountered it in real life nor in a single testimonial on any scoliosis web site. Not saying you can't be right though! But there are any number of kids who are diagnosed at 35+* who are braced. Any number. Many (most?) smaller curves simply aren't noticed before then.

Well, I think the reason they don't brace kids over 50 is that simply being over 50 degrees *while still growing* is a surgical trigger.

Yes but the question is why is it a surgical trigger?

However, being over 50 as an adult is *not* a surgical trigger. Depending on which doctor one chooses, you also have to be 1) progressing, 2) in pain, or 3) both.

Correct as far as I know.

(snip)

You don't fuse kids to keep them from having surgery as an adult. You fuse them to keep their curve from getting substantially bigger in a small amount of time. OTOH, you fuse adults because they're in pain. Totally different decision processes. That's why there was no decision involved in sending your daughters' to surgery, while there *is* a decision involved in sending my son.

Not following. Adults are fused for progression routinely, sometimes without pain. There are testimonials on here about that. Large curves progress on average 1-2* per year but can go higher.

The decision involved with your son is that there is no obvious progression as I understand his case. And no pain. It doesn't matter what his angle is if one or both of those are missing. If either one occurs I think the decision will become clearer.

[hdugger]

Yes but the question is why is it a surgical trigger?

sorry, I obviously misspoke about rapid progression not being a trigger for adult surgery. So, doctors perform surgery on rapidly progressing curves above a certain size because they want to halt the progression which doesn't seem to be halting on its own.

So, if a surgeon knew with 100% certainty that a child (or adult's) rapid progression would end at 52 degrees, I doubt they'd do surgery. They do surgery because it's clearly getting bad very quickly and they can't tell where it will stop.

[Pooka1]

So, if a surgeon knew with 100% certainty that a child (or adult's) rapid progression would end at 52 degrees, I doubt they'd do surgery. They do surgery because it's clearly getting bad very quickly and they can't tell where it will stop.

Yes. I would certainly hope and expect that no surgeon would operate on a curve that will stop and stay at 52* without pain in a kid or an adult.

Fifty degrees is a surgical trigger angle in both kids and adults because it correlates on average with a progression rate that will result in a large curve, whether that is rapid in kids or more slow in adults. That's on average... we have several exceptions in this little sandbox going both ways... ~50* curves in adolescence that hung there for decades and 25* lumbar curves at maturity that reach surgery territory in young adult adulthood. The variability is the message with the averages being less instructive.

[LindaRacine]

I think it's pretty clear that anyone with scoliosis (and even those without scoliosis) have a risk of scoliosis progression as they age, including those already fused. Nothing is set in stone.

If someone has a solid fusion, backed up by rods, their curves will not progress within the fusion mass. They may curve above or below the original fusion, but that would not be considered progression.

[Ballet Mom]

If someone has a solid fusion, backed up by rods, their curves will not progress within the fusion mass. They may curve above or below the original fusion, but that would not be considered progression.

Oh, I would have considered that progression. It was certainly what I meant. What do the surgeons call it when the curves progress above or below the fusion, out of curiosity?

[Ballet Mom]

Oh, I would have considered that progression. It was certainly what I meant. What do the surgeons call it when the curves progress above or below the fusion, out of curiosity?

The research articles I've looked at call the progression of curves above and below the fusion either "uninstrumented curve progression", or "curvature progression around the fusion site". Junctional kyphosis is always called out on its own and sometimes degeneration of discs is called out on its own, but not always. I assume when it's not, it must be included in the curve progression category.

[LindaRacine]

The research articles I've looked at call the progression of curves above and below the fusion either "uninstrumented curve progression", or "curvature progression around the fusion site". Junctional kyphosis is always called out on its own and sometimes degeneration of discs is called out on its own, but not always. I assume when it's not, it must be included in the curve progression category.

I have no idea what you're trying to say. Curves solidly fused with implants do not progress. Curves can develop above or below the original fusion and that is usually classified in the broad category of adjacent segment disease.

[Ballet Mom]

I have no idea what you're trying to say. Curves solidly fused with implants do not progress. Curves can develop above or below the original fusion and that is usually classified in the broad category of adjacent segment disease.

I am aware that solidly fused bone does not curve. I am talking about the curves that develop above and below the original fusion. And apparently that can and is called by the terminology I stated, so apparently that is terminology that is used by people in the "industry". They may very well call it adjacent segment disease, but in the articles I pulled up, it was not stated in that terminology. They called it progression.

Anyhow, it doesn't matter, I was just trying to find out what that process was called since I was called on it. Apparently it must be called different things by different people...or it's changed over the years.

[LindaRacine]

I am aware that solidly fused bone does not curve. I am talking about the curves that develop above and below the original fusion. And apparently that can and is called by the terminology I stated, so apparently that is terminology that is used by people in the "industry". They may very well call it adjacent segment disease, but in the articles I pulled up, it was not stated in that terminology. They called it progression.

Anyhow, it doesn't matter, I was just trying to find out what that process was called since I was called on it. Apparently it must be called different things by different people...or it's changed over the years.

I did some searches on the phrases you mentioned above, and did not find specific examples of anyone calling something like "uninstrumented curve progression" progression of a fused curve. I believe "uninstrumented curve progression" refers to progression of a compensatory curve that was not fused.

I could not find any citations with the phrase "curvature progression around the fusion site".

Lastly, I have no idea what "Junctional kyphosis is always called out on its own and sometimes degeneration of discs is called out on its own, but not always. I assume when it's not, it must be included in the curve progression category." means.

[Pooka1]

Linda, do curves develop outside the original fusion ever?

I mean develop apart from:

1. not fusing a structural curve such as only fusing the top curve of a double major.

2. junctional kyphosis which seems more like bending around a point at the top or bottom of a curve and not a new curve developing. I think junctional kyphosis is a type of ALD.

Rather than causing the development of other curves, fusion as I understand it can "drive" other parts of the spine with compensatory curves straight(er) as was the case with both my kids. And as I understand one of those POSNA talks (and I may not), the straighter you get the T curve, the straighter you drive the lumbar for T curves*. I think that would be exactly opposite to the claim fusion causes curves to develop elsewhere.

* This may be limited to certain types of Lenke curves... can't quite remember. But I believe it given both my kids were straightened to 5* or less through the thorax but only one has a small L curve remaining and she's the one with the ~0* T curve now. This seems controlled by particulars of the position of the spine and not under control of the surgeon because you can't get straighter than 0*.

[hdugger]

There was someone on the scoliosis support forum who talked about her curve "traveling up her back." So, when they fused her in the mid-thoracic spine, she developed a curve in the upper thoracic spine. And, when they fused that, she developed on in her cervical spine.

I don't think she was talking about PJK, but I can't be certain.