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View Full Version : Interesting thread on FixScoliosis's blog



Pooka1
06-16-2009, 03:46 PM
Scoliosis surgery - is it a cure? (http://www.fixscoliosis.com/forum/showthread.php?t=38&highlight=cure)

First and as usual, I want to say I like Fix's blog site. I am a bit worried that he might be taking some comments personally. I just hope that isn't the case.

Second, I would like to discuss this issue... is surgery a cure?

Fix disagrees with calling surgery a cure and equates fusion surgery with multiple daily insulin injections for Type I diabetes. Thus he is saying fusion surgery is a treatment as opposed to a cure.

I disagree with this equation for a few reasons.

First, there is NO equivalence between multiple daily insulin injections for Diabetes and a single surgical fusion. If only one injection was required in one's life, then the comparison might be relevant.

Second, if fusion surgery in fact:

1. returns some patients to a state where there curve is stabilized over their lifetime (see item 2),

2. they have the same incidence of ALL back issues as a person without scoliosis over their life (this of course assumes no pseudoarthrosis which is of course rare with the new instrumentation and in fact so rare that 95% of kids need no physical restrictions whatsoever to avoid a pseudoarthrosis),

and

3. they don't have to do a thing more or less than anyone without scoliosis to maintain it,

would that be better described as a "treatment" or a "cure?"

While hairs can be split, I think when you are at the point where the claim at least is that a patient is expected to have no higher incidence of ANY back problem over and above the general population, then I call that a "cure" and can still claim intellectual honesty.

So I guess I'm left with the question... if this pans out (same incidence of all future back issues as the general population which we learn from Linda is ~85%) then would you consider that a "cure?"

Or is the problem that nobody believes that could possibly be the case and so don't want to label it a "cure?"

The latter has some ground to stand on as we do not have long-term studies with the modern instrumentation. But the former does not have any ground to stand on as far as I can tell.

PNUTTRO
06-16-2009, 04:12 PM
Maybe it is only a cure if you are cured.

For those that need revisions, maybe the surgery wasn't a cure. For those that do as well as the general population, maybe it it.

As is true for most things, there is no "one size fits all".

MissEmmyF
06-16-2009, 04:51 PM
Hmmm, good question...I see what you mean. I think that it can be considered a "cure" for many people. I view a cure as anything where it's a one time fix and then you're basically good to go for the rest of your life. So, if you get fusion and then have no future problems at all aside from normal back pain (that anyone might experience even with a "normal" spine), it is considered a "cure" for you. If you need future treatment, it wasn't really a true "cure."

We "cure" a lot of things like cancer that then come back. We "cure" crooked teeth with braces, but then they can become crooked again. We "cure" a cold with antibiotics, but then you're guaranteed to have more colds in your life. So, we kind of use the term loosely, and I think there's many different ways to word stuff accurately so that it can be considered a "cure" or a "treatment" - just depends how good you are with words!

I don't think it's like Type 1 Diabetes though (which my mom has) because that's truly daily maintenance. My mom has a pump attached to her at all times and is constantly monitoring her blood sugar, giving herself insulin when needed, etc. all day long.

Pooka1
06-16-2009, 04:57 PM
Maybe it is only a cure if you are cured.

For those that need revisions, maybe the surgery wasn't a cure. For those that do as well as the general population, maybe it it.

As is true for most things, there is no "one size fits all".

Yes I see that point.

But I think Fix is saying surgery cannot be a cure in any instance IN PRINCIPLE.

I hope he will correct me on that if I am mischaracterizing his position.

Last, I think rather than fusion surgery, exercise, Clear, Schroth, etc. are a PERFECT analogy to ongoing daily insulin shots for Type I diabetes. You stop, you lose everything. Exercise is clearly a treatment and NOT a cure nor is it claimed to be a cure as far as I know.

MissEmmyF
06-16-2009, 05:15 PM
Last, I think rather than fusion surgery, exercise, Clear, Schroth, etc. are a PERFECT analogy to ongoing daily insulin shots for Type I diabetes. You stop, you lose everything. Exercise is clearly a treatment and NOT a cure nor is it claimed to be a cure as far as I know.

I agree - if you do indeed get any curve reduction while doing Schroth, Clear, or other exercises, they will definitely have to be continued over one's life...which is fine...they are scoliosis management programs; not one stop cures. But, they are definitely not "cures"

Pooka1
06-16-2009, 05:29 PM
I agree - if you do indeed get any curve reduction while doing Schroth, Clear, or other exercises, they will definitely have to be continued over one's life...which is fine...they are scoliosis management programs; not one stop cures. But, they are definitely not "cures"

I, of course, agree with that but let's see what Fix says in re if he thinks surgery can't be a cure IN PRINCIPLE and whether he agrees with you that exercise can't be a cure IN PRINCIPLE.

CHRIS WBS
06-17-2009, 12:33 PM
I have yet to come across any publication or study by a scoliosis surgeon referring to surgery as a cure, even in principle. If I did, Id think him a quack.

Pooka1
06-17-2009, 01:52 PM
I have yet to come across any publication or study by a scoliosis surgeon referring to surgery as a cure, even in principle. If I did, I’d think him a quack.

I have never claimed surgeons say fusion is a cure.

What I don't understand is why they don't.

If a surgeon told you your surgery placed you back in the general population on risk of ALL manner of future back problems, and you didn't have to do anything special over and above an unfused person to have the same risk, would you consider surgery a "treatment" or a "cure" at that point?

If that isn't a cure then I don't know what the word means.

Singer
06-17-2009, 02:32 PM
But we (at least adults who are fused) DO have to maintain our backs in a way that's different than the general population. Maybe kids don't, but adults certainly do. It's my understanding from my surgeon that if I engage in activities that might stress my fusion, like the kind of repetitive, thoracic bending one typically does while gardening, I will put myself at increased risk of developing problems.

I don't think that spinal fusion puts you on the same playing field as the general population because most of us have at least SOME restrictions -- either suggested by the surgeon or self-imposed.

If I could have gone back to the things I could do before I was fused without new and additional risk, I would consider myself cured. But I definitely consider myself treated. The progression of my scoliosis was arrested, but scoliosis as a condition is still very much with me.

Pooka1
06-17-2009, 02:55 PM
But we (at least adults who are fused) DO have to maintain our backs in a way that's different than the general population.

Ah, my understanding is this is entirely a function of where the fusion ends, NOT whether you are a kid or an adult.

I specifically asked if my daughter had to do anything special to avoid problems above and below and he said no, there was nothing special she should do.

He said she was back in the general population on risk for all future back issues. I am assuming he said this based on respecting the temporary restrictions (therefore no pseudoarthrosis likely) and where her fusion ended (L1) but I don't really know exactly what he thinks it.

Pam's fusion ended at L1 also and I think her surgeon told her something similar.

I am wondering if my one daughter shouldn't be fused at less than the magic 50* if it means not going past L1.


Maybe kids don't, but adults certainly do. It's my understanding from my surgeon that if I engage in activities that might stress my fusion, like the kind of repetitive, thoracic bending one typically does while gardening, I will put myself at increased risk of developing problems.

Your fusion ends at L5. Based on what our surgeon said about why my daughter is back in the general population, it sounded like it is almost completely a function of where the fusion ends but I don't know that. I suspect if my daughter's fusion ended at L5 he might not have said what he said though.

CHRIS WBS
06-17-2009, 03:21 PM
Linda Racine,

Does this apply to adults only or adolescents as well?

http://scoliosis.org/forum/showpost.php?p=76890&postcount=2

LindaRacine
06-17-2009, 03:37 PM
Hi...

I'm guessing that it applies to adolescents, but probably not as much as adults. Adolescents usually have really good core muscle strength, and so therefore could probably withstand a lot more stress on their spines than adults. I haven't heard a lot of surgeons addressing their adolescent patients, but I can't remember ever hearing a surgeon warn an adolescent about adjacent disc deterioration.

Regards,
Linda

Pooka1
06-17-2009, 05:22 PM
Hi...

I'm guessing that it applies to adolescents, but probably not as much as adults. Adolescents usually have really good core muscle strength, and so therefore could probably withstand a lot more stress on their spines than adults. I haven't heard a lot of surgeons addressing their adolescent patients, but I can't remember ever hearing a surgeon warn an adolescent about adjacent disc deterioration.

Regards,
Linda

I suspect my daughter is not alone in being told this.

I specifically asked if she should do anything to avoid problems above and below the fusion and the answer was she didn't need to do anything to avoid problems specific to the fusion. I went in there assuming she would need an extension at some point and he said he did not expect her to need one, that it was "one-stop shopping" for surgery for her (his phrase) and that she needn't do anything special (except avoid bungee jumping).

mamamax
06-17-2009, 06:40 PM
What DrFix actually said was:

I believe saying that surgery is a cure for scoliosis is equivalent to saying that insulin is a cure for Type 1diabetes.

He then went on to explain why he didn't think insulin was a cure for Type 1 diabetes (obviously) - then asked what others thought (i.e, is surgery a cure for scoliosis).

My take is that surgery like insulin is a treatment. Likewise any non surgical methods that achieve any success - are also treatments.

Sadly - there are no cures.

Pooka1
06-17-2009, 06:49 PM
What DrFix actually said was:

I believe saying that surgery is a cure for scoliosis is equivalent to saying that insulin is a cure for Type 1diabetes.

He then went on to explain why he didn't think insulin was a cure for Type 1 diabetes (obviously) - then asked what others thought (i.e, is surgery a cure for scoliosis).

My take is that surgery like insulin is a treatment. Likewise any non surgical methods that achieve any success - are also treatments.

Sadly - there are no cures.

What SPECIFICALLY do daily insulin injections and fusion surgery have in common? I can't think of a single thing.

If a surgeon told you your surgery placed you back in the general population on risk of ALL manner of future back problems, and you didn't have to do anything special over and above an unfused person to have the same risk, would you consider surgery a "treatment" or a "cure" at that point?

mamamax
06-17-2009, 07:56 PM
If a surgeon told you your surgery placed you back in the general population on risk of ALL manner of future back problems, and you didn't have to do anything special over and above an unfused person to have the same risk, would you consider surgery a "treatment" or a "cure" at that point?

If a surgeon told me that my surgery placed me back in the general population regarding risk of future back problems and that i could live my life without any restrictions (including bungee jumping) .. I would want to consider it a cure - i would also want to know what he based those statements upon (i.e. studies and/or what evidence).

Pooka1
06-17-2009, 08:05 PM
If a surgeon told me that my surgery placed me back in the general population regarding risk of future back problems and that i could live my life without any restrictions (including bungee jumping) .. I would want to consider it a cure - i would also want to know what he based those statements upon (i.e. studies and/or what evidence).


That's wise. I want to now what they are based on also.

Based on comments he told me, I am guessing he is basing that on:

1. where her fusion ended (L1) (this is the overarching one as far as I can tell... I would not be surprised if this turned out to be the ONLY reason he said she is back in the population)

2. her adherence to the 8-month physical restrictions

3. the ability of the new instrumentation to completely address the major (only?) concern of the previous generation instrumentation (sagittal balance).

mamamax
06-17-2009, 08:18 PM
Can you tell me what instrumentation was used? Looks very promising .. and like information i may want to keep in my back pocket ;-)

Pooka1
06-17-2009, 08:47 PM
Can you tell me what instrumentation was used? Looks very promising .. and like information i may want to keep in my back pocket ;-)

Pedicle screws.

I'm now wondering if virtually all the cases of problems with the previous instrumentation involved non-thoracic curves. It is my understanding that there are people with Harrington rods who still have no problems. I wonder if there is a pattern in who had problems.

If it is the case that even the previous instrumentation was essentially a cure for certain curves then I could see our surgeon telling us surgery with the new instrumentation is one-stop shopping for my kid.

Pooka1
06-17-2009, 09:31 PM
Just in case my memory is going, here is what I wrote at the time of Savannah's 7.5 month appointment...

NSF thread (http://www.scoliosis.org/forum/showthread.php?t=8002)

4. I asked about what Savannah can do to avoid stress/strain/whatever on the spine and discs above and below the fusion to minimize injury and the need for future revision/extension. I had assumed that maybe 30, 40, 50 years from now she might need a revision or extension of the fusion.

He said she has nothing to do... she is back in the general population and will have no higher likelihood of spine/disc/whatever pathology/pain/whatever than an unfused person. I had to have this repeated because I couldn't believe it. He was insistent that because of where the fusion ended (L1), she is back in the general population in every respect with the same odds of back issues.

So I guess the ONLY reason he feels she is back in the population is because the fusion ended at L1 based on what I wrote at the time of the appointment. Those other two reasons I listed I guess don't come into it as far as I can tell from what I wrote then.

That post also reminds me I still don't have the digital radiographs. I want Savannah to have those. I'll ask for those again.

LindaRacine
06-17-2009, 11:12 PM
Just in case my memory is going, here is what I wrote at the time of Savannah's 7.5 month appointment...

NSF thread (http://www.scoliosis.org/forum/showthread.php?t=8002)

4. I asked about what Savannah can do to avoid stress/strain/whatever on the spine and discs above and below the fusion to minimize injury and the need for future revision/extension. I had assumed that maybe 30, 40, 50 years from now she might need a revision or extension of the fusion.

He said she has nothing to do... she is back in the general population and will have no higher likelihood of spine/disc/whatever pathology/pain/whatever than an unfused person. I had to have this repeated because I couldn't believe it. He was insistent that because of where the fusion ended (L1), she is back in the general population in every respect with the same odds of back issues.

So I guess the ONLY reason he feels she is back in the population is because the fusion ended at L1 based on what I wrote at the time of the appointment. Those other two reasons I listed I guess don't come into it as far as I can tell from what I wrote then.

That post also reminds me I still don't have the digital radiographs. I want Savannah to have those. I'll ask for those again.
Sharon...

I'm fairly certain that the majority of people who have had revisions after scoliosis surgery, had lumbar fusions. At least, that's what it seems like to me anecdotally. I do, however, know some people with thoracic fusions, who have had revisions, particularly in terms of proximal junctional kyphosis. I think there was one study that showed that about 25% of thoracic fusions had this issue, although I'm guessing these people are far less likely to report pain, and therefore have revision surgery. I also think that just knowing about this issue has helped specialists do a better job of selecting fusion levels to avoid the problem.

Regards,
Linda

Pooka1
06-18-2009, 12:57 PM
Sharon...

I'm fairly certain that the majority of people who have had revisions after scoliosis surgery, had lumbar fusions. At least, that's what it seems like to be anecdotally. I do, however, know some people with thoracic fusions, who have had revisions, particularly in terms of proximal junctional kyphosis. I think there was one study that showed that about 25% of thoracic fusions had this issue, although I'm guessing these people are far less likely to report pain, and therefore have revision surgery. I also think that just knowing about this issue has helped specialists do a better job of selecting fusion levels to avoid the problem.

Regards,
Linda

Okay I didn't know that.

But again, that is with older instrumentation that caused known problems. I'm betting with the new instrumentation that gets sagittal balance correct, maybe lumbar revisions will be rare also.

And I can't get your comment out of my mind that earlier fusion may save some levels. If that is true, I don't know why they don't operate at much lower angles if it means not fusing the lumbar area. For example, my one daughter is at 36* - 40*. If I thought there was some chance that her fusion would extend into the lumbar by waiting until she gets to 50*, I would start asking many more questions about the "magic" 50* angle.

I am starting to question the ethics of 50* if it means longer fusions in some, actually ANY cases. How is that ethical? What am I missing?

I'm not saying a second revision/extension down the line is unthinkable. I was under the assumption my daughter would need to do that at some point until I was edified. I'm just saying I think I must be missing something here.

PNUTTRO
06-19-2009, 01:29 PM
In Bridwell's paper that I read for the other thread (http://www.scoliosis.org/forum/showthread.php?t=8960), he stated that there is evidence that fusion at a younger age means less pain and better healing.

If you put off fusion until your 30s or 40s, then you usually opt for surgery because of pain and usually the pain isn't completely resolved. (I admit. I am too lazy to go back it read it for the numbers--and the paper is 10 years old.) Maybe not fusing leads to more lumbar complications, but he doesn't explicitly say that.

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