Average Progression rates

[hdugger]

Because of this, surgery is simply more tractable and therefore more can be known outside controlled studies.

I'm going to leave this at "agree to disagree." I don't believe surgeons "know" any more about the outcome (in terms of quality of life) of adult surgery then they "know" about bracing in children, and I'd trust their intuition equally in both cases.

[Pooka1]

I'm going to leave this at "agree to disagree." I don't believe surgeons "know" any more about the outcome (in terms of quality of life) of adult surgery then they "know" about bracing in children, and I'd trust their intuition equally in both cases.

Okay but what would you say about what surgeons know about fusion in adolescents? Would you say more or less is known about that compared to bracing?

[hdugger]

But in retrospect, I think the surgeon was simply highly skilled and attuned to my daughter's physical traits. He knew she was very thin, and was a ballerina and therefore likely very flexible, which he probably could figure out in the exam anyway, and he encouraged her to continue with the ballet. He also told me it was the brace he would use on his daughter if she had scoliosis, so he had obviously had good experience with it, at least for kids with the same physical attributes, and felt it had a good risk/reward trade-off.

Yes, exactly. I think that's the thing about informed intuition (ala the "Blink" book). As a surgeon who sees patients, you have this huge amount of information coming in all the time. Even if you don't track it empirically, you track it subconsciously. So, you just kind of "know" things which can't be parsed out scientifically.

Hence the importance of finding a really, really good doctor. A good doctor who's paying attention is just going to intuit stuff that makes sense of everything they've seen and read. I'd run like hell from anyone who was relying on the research to make decisions. With the way the research disagrees with itself, they'd be changing their surgical decisions mid-surgery.

[hdugger]

Okay but what would you say about what surgeons know about fusion in adolescents? Would you say more or less is known about that compared to bracing?

We haven't really had a pediatric surgeon, so I'm not sure I'd know.

But . . . given the outcome points of the two treatments, I think I'd say they know equally little.

So, the outcome point of bracing is to hold a curve until the end of the growth spurt. Pediatric surgeons are actually there for their point, so I'd guess that they have some sense about what kinds of braces work for what kinds of patients.

The outcome point for surgery is quite different. Its goal is to provide long-term quality of life. (I'm throwing this out there, you're welcome to disagree.) Given that outcome, I'd say that pediatric surgeons don't have much sense about how the surgical decisions they made affect that long-term quality of life. I'm not arguing that they don't know that surgery itself is effective - I think that case has been clearly made. I'm saying that they don't know how the *specific* surgical decisions they make turn out in the long-run.

For adult patients, it's even more of a crap shoot. I've seen lots of people on this forum come out of surgery with terrific correction but terrible pain. I have no idea how a surgeon of adult patients can "know" much of anything.

[hdugger]

As an example of the crap shoot - I've been focusing on PJK (because I believe my son is at some risk of it.) Have you read that literature? They might as well be picking causes out of a hat. One study says hooks, the other says screws, and another says mixed. One thinks its the gender, another thinks it's the age. If *one* of those studies is correct, I wish it would stand up and announce itself, because I can't make heads or tails of it.

But . . . if I just follow the stories of everyone going in for surgery who sounds a bit like my son, the pattern I see is that people with kyphosis (whether with scoliosis or not) going into surgery almost always come out with some kind of neck problem. Maybe that's an anomaly over the last year on the two forums I participate on, but that's the data I'm pulling out. So, that's how I'm making sense of the research. I'm paying attention to what I see, and I'm looking at my son, and I'm asking "Is he like the people that end up with that problem." Only after that do I see if the research confirms that at all.

I suspect his surgeon is doing the same thing. He may be reading the research, but I can't imagine he's relying on it. Mostly he's relying on what he's seen and what he's heard. I can only help its gelling in his head better than it is in mine.

[Ballet Mom]

From my reading of PJK, I think it's the people with some kyphosis who, due to the strength of the new hardware systems, are able to obtain "too great" a correction. The change in the kyphotic curve is too drastic and leads to neck problems. Hopefully their use of hooks at the top of the fusion will help.

But what do I know....I could be completely wrong!

[Ballet Mom]

As an example of the crap shoot - I've been focusing on PJK (because I believe my son is at some risk of it.) Have you read that literature? They might as well be picking causes out of a hat. One study says hooks, the other says screws, and another says mixed. One thinks its the gender, another thinks it's the age. If *one* of those studies is correct, I wish it would stand up and announce itself, because I can't make heads or tails of it.

You're right hdugger. I just found a research study that absolutely rejects what I just said in the post above.

a larger magnitude of kyphosis both before surgery and at final follow-up tended to be associated with the development of PJK. A comparison of those patients who developed PJK with those who did not is contained in Table 6 . Those patients that developed PJK had a lower kyphosis percentage correction compared with those patients that did not develop PJK.

Also:

There was no apparent correlation of proximal anchor type (hook or screw) with the development of PJK

(Operative Management of Scheuermann's Kyphosis in 78 Patients: Results
http://www.medscape.com/viewarticle/566467_3 )

It really is a crap shoot. This study says that 39% of their studied fusions developed PJK (most cases are not that big a problem) ...so there's something going on with the new hardware that these surgeons are searching around to solve.

The prevalence of PJK at 7.8 years postoperation was 39% (62/161 patients).

This study thinks the risks are: Older age at surgery >55 years (vs. < or =55 years) and combined anterior and posterior spinal fusion (vs. posterior only) demonstrated significantly higher PJK prevalence.

(Proximal junctional kyphosis in adult spinal deformity after segmental posterior spinal instrumentation and fusion: minimum five-year follow-up.
http://www.ncbi.nlm.nih.gov/pubmed/18794759 )

So what the heck? You're right, every study seems to contradict the other. At least the surgeons are hunting around trying to find the causes and solutions.

[hdugger]

Yeah, it would be almost funny if it didn't actually matter.

And the likely cause that Linda suggests - that PJK is often the result of surgeons choosing the wrong level - is unlikely to undergo scientific scrutiny. I don't think I've ever seen a study examining what might be considered "surgical misjudgements" for scoliosis surgery and their long-term effects.

[Ballet Mom]

Yeah, it would be almost funny if it didn't actually matter.

And the likely cause that Linda suggests - that PJK is often the result of surgeons choosing the wrong level - is unlikely to undergo scientific scrutiny. I don't think I've ever seen a study examining what might be considered "surgical misjudgements" for scoliosis surgery and their long-term effects.

Lol! No and I doubt you will either! That's what revision surgery is for.

[Pooka1]

And the likely cause that Linda suggests - that PJK is often the result of surgeons choosing the wrong level - is unlikely to undergo scientific scrutiny.

Well, if by "wrong" level you mean surgeons trying to save levels and not just fusing the entire way up the thorax then maybe that is correct. Maybe it is a joint risk determination between the patient and surgeon about how much chance they will take by not fusing up to T1. If so then it might be analogous to the trade-off at the distal end where surgeons want to go as short as possible for the sake of preserving flexibility but then they might miss fusing some of the structural curve. If folks just threw their hands up and said, "Fuse the entire length down to S1" then there would be no adjacent level disease at the distal end. The risk would be ZERO.

Also, it may be the case that no matter what a surgeon does, the intrinsic bone issues will not allow a successful fusion with any conceivable combination of instrumentation and choice of levels. It may be some folks are just SOL. That would not then be the surgeon's fault, yes? I'm just concerned that a "shoot the messenger" note might creep into this discussion and I want to head it off.

[hdugger]

Well, if by "wrong" level you mean surgeons trying to save levels and not just fusing the entire way up the thorax then maybe that is correct. Maybe it is a joint risk determination between the patient and surgeon about how much chance they will take by not fusing up to T1. If so then it might be analogous to the trade-off at the distal end where surgeons want to go as short as possible for the sake of preserving flexibility but then they might miss fusing some of the structural curve. If folks just threw their hands up and said, "Fuse the entire length down to S1" then there would be no adjacent level disease at the distal end. The risk would be ZERO.

I'll leave it to Linda to correct, but my sense is that she meant "the wrong vertebra" and not just "a conservative strategy."

If I can make any sense of the literature, it seems as if the problem shows up within the first two years. I'm hard-pressed to imagine a conservative strategy which only protects you for a few years at most.

[Pooka1]

I'll leave it to Linda to correct, but my sense is that she meant "the wrong vertebra" and not just "a conservative strategy."

I'll look forward to what she says but I can't imagine how "wrong vertebra" could possibly mean anything different than going short when they should have gone longer. I mean the only other choice for "wrong vertebra" is to miss the curve which I assume never happens. So the choices are go long and lose more flexibility or gamble and go shorter.

If I can make any sense of the literature, it seems as if the problem shows up within the first two years. I'm hard-pressed to imagine a conservative strategy which only protects you for a few years at most.

Not sure I'm following but the conservative strategies (i.e., not accepting risk) at least at the distal end protect the patients for EVER. There is no disc below an SI fusion. Perhaps it is the same with the top at T1 although maybe the cervical vertebra can kyphose (verb?) when T1 is included.

[hdugger]

I'll look forward to what she says but I can't imagine how "wrong vertebra" could possibly mean anything different than going short when they should have gone longer. I mean the only other choice for "wrong vertebra" is to miss the curve which I assume never happens. So the choices are go long and lose more flexibility or gamble and go shorter.

In the example she gave, it sounded like they missed the curve and didn't include the correct proximal end. But, again, I'm just remembering what I recall.

I'm not sure exactly what flexibility they'd hope to retain in the thoracic spine, but I'm not sure a vertebrae or two one way or the other is going to make much difference.

Not sure I'm following but the conservative strategies (i.e., not accepting risk) at least at the distal end protect the patients for EVER. There is no disc below an SI fusion. Perhaps it is the same with the top at T1 although maybe the cervical vertebra can kyphose (verb?) when T1 is included.

Sorry, I flipped the definition of conservative

I meant that, if it was a decision to spare a vertebrae in order to preserve flexibility, that seems like an odd trade off if you pay the price in PJK within at most a few years. I assume that the "spared" lumbar vertebrae last a little longer than that.

And, yes, as far as I can make out, the PJK can go up into the cervical vertebra. So, you can see why, as the parent of a kid whose curve starts at T2, I'd be pretty concerned about how they'd deal with PJK if he ends up with it. Fuse the neck? Sounds pretty bad to me.

[hdugger]

This isn't exactly the right post - there's one I remember where she addressed it more generally - but this is kind of what I recall Linda saying:

http://www.scoliosis.org/forum/showp...0&postcount=10

you can scroll up a little to get the context.

[Pooka1]

This isn't exactly the right post - there's one I remember where she addressed it more generally - but this is kind of what I recall Linda saying:

http://www.scoliosis.org/forum/showp...0&postcount=10

you can scroll up a little to get the context.

Okay Linda will dope slap me but I think adjacent level disease at the distal end is caused by not fusing part of the structural curve and(or) not achieving good balance. Additionally, if the distal end is in the lumbar then adjacent level disease may not be preventable no matter what you do because of the state of the art w.r.t. lumbar fusions.

Not sure what causes adjacent level disease at the proximal end.

I think what Linda means by wrong is that they didn't fuse high enough to avoid the kyphosis. They took a risk by going shorter.

At he distal end, adjacent level disease can be avoided completely by fusing to S1.