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Back-out
06-10-2010, 09:03 PM
This is a bit like rohrer's article only the focus is on things that can go wrong, specifically. It is also based on a survey of PubMed reports published.

http://www.scoliosisjournal.com/content/3/1/9

As I said elsewhere, I've been sitting on it for fear of being too discouraging (for a good while, in fact).

I know those who, like me, suffer intractable pain and severe dysfunction, may not be able to be as conservative as these authors might be indirectly advocating, However, this study DOES give one pause. Note, the results studied date largely from ~2000.

I think the primary point is incontrovertible, whatever the authors' motives may be - that such research is much under-reported, that reporting is fairly random and that to a large extent, no one really knows the long term complication rates. Looking far out, is virtually impossible (certainly, no one has been trying either!), as older patients especially, fall prey to other ills and it's easy to forget what contributory role their major surgery may have played.

Doesn't mean it's not worth having a go at it, but it's worth knowing the uncertainty factor. I have great hopes that Lawrence Lenke's six year tenure as in-coming head of the SRS will change this dearth of stats, It was leadership such as his (for all I know he initiated this change too) that led the SRS to require its members to report on DEATHS among their patients. Meaning, at first surgery, as I understand this article,

Up until a few years ago, surgeons didn't have to report on mortality rates and most (I gather) did NOT - not, pubicly!

This is a point I was arguing in a different thread (from one angle) - that in the field of spinal surgery, especially complex spinal surgery, there is a strong motive NOT to report openly. This is, after all, THE most lucrative field in surgery and there is a lot of ego and jockeying for turf.

Not that aren't more modest, dedicated physicians in the field! However, looking as a psychologist, at who chooses this branch of medicine (and surgery, more broadly), I'd have to say the pre-selection bias favors ego and agressiveness.

Also (NOT related to the points of this article) - sadly - there is a great deal of corruption in this field, specifically in regards to marketing surgical parts, especially those that are in effect, inventions.

Don't be thrown by the elderly textbooks citedl; they are only there to give background. Having glanced around Amazon today at Scoli bks, I see the newest textbooks cost many hundreds of dollars - some up to $800. That's a drop in the bucket for a scoliosis surgeon (and tax-deductible to boot) but certainly beyond the budget of most researchers who need to rely on PubMed.

That in itself, says the authors are outliers, as otherwise they'd have had access to symposium notes and restricted publications such as are found on for pay reference sites like Elsevier. Disconfirmations welcome, especialy ones looking at detail and body of the arguments or at statistical weakness, if any.

Pooka1
06-10-2010, 09:10 PM
That in itself, says the authors are outliers, as otherwise they'd have had access to symposium notes and restreicted publications such as are found on for pay reference sites like Elsevier. Disconfirmations welcome, especialy ones looking at detail and body of the arguments or at statistical weakness, if any.

This is gray literature which is even more questionable (not even peer-reviewed) than the peer-reviewed journal articles of which a majority are false themselves. So at this point, gray literature isn't really worth reading and nor is much of the peer-reviewed literature because it isn't controlled.

Here's my response to that article that I posted on the other thread also...

This is garbage. :D

It deals mostly, if not exclusively, with historical use instrumentation. I scanned the dates and titles of the references and that's what seems to dominate though I didn't do an exhaustive review.

It is irrelevant to modern instrumentation and techniques.

This journal is notorious for publishing misleading articles because they have an agenda of attacking surgery in place of providing positive evidence for conservative and alternative treatments.

And the record for the older instrumentation is still far better than for any conservative and certainly for any alternative treatment. It's easy to lose sight of that.

hdugger
06-10-2010, 09:12 PM
Weiss makes decent money - he can afford to research the topic thoroughly.

Pooka1
06-10-2010, 09:18 PM
Weiss makes decent money - he can afford to research the topic thoroughly.

And yet he doesn't. Quite clearly.

He declares no conflict but I think at this time he was employed at the Schroth institute. That is a huge conflict, no? And he is still in the field now despite leaving the Schroth institute so there is still a conflict he should have declared. I mean unless he has taken to riding his reiners full time. :D

He should busy himself with ponying up POSITIVE evidence for PT and bracing. Publishing nonsense about historical instrumentation is transparently a "Look at the Wookie" maneuver to hide the lack of evidence for the treatments that he profits from. Recall Schroth is a still a fringe treatment even in Germany. There is a reason for that.

Pooka1
06-10-2010, 09:19 PM
Weiss uses the same tactics that evolution deniers use. So he is not in good company.

Back-out
06-10-2010, 09:20 PM
One cannot help noting that even Linda Racine and David Wolpert need or have had revision surgery. Personally, I was much taken aback after my first (and so far, only) surgical consults at being told by rwo of three surgeons to expect more surgery - and probably within ten years, likely much sooner...

It is perhaps unfair of me that I am looking farther and temporarily, at least, rejecting those surgeons. They may actually only be the virtuous bearers of bad tidings! Perhaps they thought "she seems like a grown-up; she can take the Truth". If so, how wrong they were! :rolleyes: I'm a weenie and moreover I'm a broke weenie without a good social support network (even if - haha - the thought of more surgery, at worst, a frank revision - didn't scare me S*LESS!)

But it DOES!

Maybe I just have to come to terms with this, though, especially considering my demographic - namely: long fusion (14+ segments), lumbar area the worst and over 60. Also (I suspect), I'm in a worse prognostic category because of severe complicating spinal conditions such as DDD, flatback and spondylothistesis. Oh crap! :(

Anyhow, please take potshots at the article, and I hope your aim is good as it's been a real downer for me. I just HATE the degree of uncertainty that appears to attach to outcomes, as I make decisions probabilistically including an estimated margin or error attached to that prediction. The error rating alone, seems to be so high here, I hardly dare proceed!

Back-out
06-10-2010, 09:29 PM
Bring 'em on, Sharon. I'm an apologist for neither article nor authors.

However, what I got out of it, unmistakeably, is that based on publicly available research, NO ONE CAN STATE WITH CONFIDENCE THAT COMPLICATIONS ARE NOT EXPECTABLE. That is, complications serious enough to result in the (eventual, at least) need for more surgery.

MAN, do I hope I'm wrong! Conflict of interest, I'm afraid, is not enough of an argument, though, nor is "Bad reputation" for the journal. That's ad hominem "corporatizing" the individual of the journal too. Please attack their arguments, especially that "unknowability" one. That's the killer. Now, maybe surgeons know more - I dare say they do.

But what can we little worms of patients know?:(

Pooka1
06-10-2010, 09:38 PM
I hope Linda comments.

And if pointing out conflict of interest is somehow wrong then why do all the journals require it?

Some things are wrong by their nature. Evolution denial, holocaust denial, etc., etc. It is CORRECT to attack them though not to silence them. The open criticism is what matters.

Everyone is entitled to their own opinions. They are not entitled to their own facts. The perennial struggle.

Back-out
06-10-2010, 10:07 PM
I hope Linda comments.

And if pointing out conflict of interest is somehow wrong then why do all the journals require it?
No, it's not wrong, It's simply inadequate as a rebuttal. This is not a double blind study, but a literature review. Did they eliminate any sources, improperly characterize them, or make mistakes in either statistical analysis or conclusions?


Some things are wrong by their nature. Evolution denial, holocaust denial, etc., etc. It is CORRECT to attack them though not to silence them. The open criticism is what matters.

Everyone is entitled to their own opinions. They are not entitled to their own facts. The perennial struggle.

"Wrong" as used above sounds like a judgmental word, though I suppose you could claim that you are using it in the sense of "incorrect". Perhaps it is your inclusion of the claims of Holocaust deniers, which are demonstrably morally wrong, in addition to being factually inaccurate. However, factual inaccuracy seems to qualitatively under-characterize the mistakes underlying Holocaust denial. You are flirting with "Godwin's Law". :o

I do not think we dare put merely contesting the knowability of outcomes in scoliosis surgery in that category. What exactly do we have to counter the claim that they ARE, in fact, unknowable, except for two NIH studies conducted in only TWO institutions?

And, of course, the anecdotal evidence on this site, which is wholly unexplored in any measurable fashion (and which has been shown to be subject to enormous response bias).

I wish this were NOT so! :(

Back-out
06-10-2010, 10:09 PM
Pooka
It deals mostly, if not exclusively, with historical use instrumentation. I scanned the dates and titles of the references and that's what seems to dominate though I didn't do an exhaustive review.
No, it doesn't.

hdugger
06-10-2010, 10:11 PM
One cannot help noting that even Linda Racine and David Wolpert need or have had revision surgery. Personally, I was much taken aback after my first (and so far, only) surgical consults at being told by rwo of three surgeons to expect more surgery - and probably within ten years, likely much sooner...

I'm no surgery fan, but 2 out of 3 revisions within 10 years sounds *very* high to me. I haven't seen anything nearly that high in the research - even the worst numbers were more like 25%.

Back-out
06-10-2010, 10:18 PM
I'm no surgery fan, but 2 out of 3 revisions within 10 years sounds *very* high to me. I haven't seen anything nearly that high in the research - even the worst numbers were more like 25%.
They didn't say "revisions". Could be they meant "touch-ups". And besides, as I pointed out above, my demographic's prognostics are probably the worst.

Note, I AM looking else-where for now too. One might uncharitably call that "doctor-shopping". I do not plan to advertise how many surgeons I've consulted from here on out - besides on this site. ;)

Anyhow, as far I'm concerned "from your lips to God's ears", etc! :)

LindaRacine
06-10-2010, 10:40 PM
Spine surgeons have never hidden their high rates of complications. They publish them so that patients are informed about their treatment options, and can therefore make fully informed decisions. On the other hand, Weiss has never published a long-term follow-up to Schroth. Why is he spending all his time trying to convince people that surgery is so bad instead of trying to prove that Schroth is good? I can guess the answer to that, so no need to answer.

Yes, I'm going to have to have more surgery, as will a bunch of other people. I've never seen the medical community try to hide that fact. Have you?

Did Dave Wolpert say he needed more surgery? He didn't mention it to me, and I don't recall seeing it here.

--Linda

LindaRacine
06-10-2010, 10:43 PM
And, by the way, why do we have to start a new thread for something like this? There's another thread in which this would have fit. PLEASE try to find a thread to continue instead of starting half a dozen new threads daily.

Back-out
06-10-2010, 11:17 PM
Linda, I DID link this article there, However, different authors , different methodologies and different publications need to be addressed separately. I hope they can be debunked, at least in part, based on statistics and conclusions.

They are far from identical even if (IF!) their authors share an element of cheap sensationalism in their intrinsic motivation. They cannot be tarred with the same brush.

However, perhaps both articles belong in the research sub-forum, Perhaps you could move them there, so they can be debated, but without demoralizing new patients. I believe we need to address the issue of lack of outcomes research and the impossibility of informed decision-making such as exists in cancer treatment (a comparison, I explore in the other thread)

I think they should be moved and, in fact, I request it.

LindaRacine
06-10-2010, 11:33 PM
I believe we need to address the issue of lack of outcomes research and the impossibility of informed decision-making such as exists in cancer treatment (a comparison, I explore in the other thread)


A PubMed search of scoliosis surgery brings up 7,357 citations. In what universe is that a lack of outcomes research? Scoliosis surgeons, at least the ones I know, are not afraid to publish their outcomes. When someone publishes a long-term follow-up of an alternative treatment, with a statistically significant sample size, in a peer-reviewed journal, perhaps there will be something to compare. Until then, scoliosis surgeons will continue to publish their outcomes.

At UCSF, the orthopaedic spine service, which has 5 surgeons, has 3 full-time researchers, as well as about a dozen part-time employees and volunteers. We are not unique. Do a PubMed search for scoliosis, from the following institutions: Hospital for Special Surgery, Washington University St. Louis, Leatherman, & UCSF. That's just a few off the top of my head. What do you think they're hiding?

Back-out
06-10-2010, 11:58 PM
A PubMed search of scoliosis surgery brings up 7,357 citations. In what universe is that a lack of outcomes research? Scoliosis surgeons, at least the ones I know, are not afraid to publish their outcomes. When someone publishes a long-term follow-up of an alternative treatment, with a statistically significant sample size, in a peer-reviewed journal, perhaps there will be something to compare. Until then, scoliosis surgeons will continue to publish their outcomes.

I'm very glad to hear this journal is not peer-reviewed (who would the peers be?). As I said at first go, my fondest wish is that these painful contentions can be WELL debunked. Mere name-calling of the authors and publication do not (unfortunately) cut it.

We live in an age of lying often called ironically "The Age of Information" . Facts have multiplied like rats in plague times, while truth has become only more elusive.

Why? Because those with an interest in obfuscation. USE facts to hide. Pooka claims charlatans invent facts. I say doctors invent conclusions and certainty, substituting "doctored" opinion for real information to which patients are entitled. (Who can plausibly claim that doctors today - in the USA - are scientists more than they are businessmen/women? )

Facts, and indeed statistics (this is as old as Twain's aphorism, if not older), are employed in the service of deception. Lay-persons defer to "experts" in every field, because they cannot process the excess of confetti-like information. It's the same with the near infinity of online scrolled contracts, there to catch the unwary, by providing more information than anyone can handle. This is lying by excess information. I long for a "simple language law" on the Internet!

The same goes for scoliosis outcomes research. The fact that there are over 7,000 published surgeons reports rather than being encouraging, is discouraging,

Where are the summary studies linking all this detail in meaningful generalizations to aid patients in decision-making? Again, I make the comparison to oncology research. As numerous as patient complaints are about decision-making for cancer treatment (and they are!), it is NOTHING compared to scoliosis decisions where everything meaningful is left to trust and anecdote.

Unless, of course, one is a trained scientist-physician able to sift through these studies (God knows how) and separate the wheat from the chaff. That includes recognizing who and what are missing!

Compared to decision-making in cancer, scoliosis patients are left rudderless in a sea of "information" which, in fact, amounts to burial of the truths we need to know. That means: summaries of results from centers and different surgeons, broken down and cross-referenced by years of practice, patient satisfaction (ALL OF THEM; this includes how many pts were lost to follow-up and why) and more.

I believe there are two available longitudinal studies - for MO and UCDavis (UCSF? Other?). If meta-analyses exist, they are meaningless unless they are actually available to the general public, to us. What about our "Right to Know?"

Again, I have great hopes that this is about to undergo a sea change under Lenke's leadership. But to protest as I am, ought not be regarded as blasphemy! Disappointing? Yes, it is! But it is the available information that is disappointing, not the messenger who points out it's not really meaningful. And once more, I define information qualitatively rather than quantitatively. Without organization, it is DIS-information

Back-out
06-11-2010, 01:10 AM
All comments about doctors are to be understood as generalizations applying to group norms and NOT to individuals; many may differ significantly - even heroically. I have numerous heros in the field of medicine.

Pooka1
06-11-2010, 05:20 AM
Pooka
No, it doesn't.

Break out the data for modern use instrumentation. Is it clearly delineated from the historical use instrumentation? If it is lumped together and not clearly separated is that honest? What percentage of the entire paper is it? I only scanned the article but it seems like none.

Weiss can't complain on the one hand about the surgical statistics looking bad and on the other with lack of surgical statistics (for modern use instrumentation).

The article is self refuting though I will have to read it carefully to confirm.

And it's bad form to criticize the only game in town when you know you have no better option to offer the bunnies.

Pooka1
06-11-2010, 05:26 AM
I believe we need to address the issue of lack of outcomes research and the impossibility of informed decision-making such as exists in cancer treatment (a comparison, I explore in the other thread)


The new instrumentation is designed to address the shortcomings of the old instrumentation. It is still too new to have long term outcomes. Even the old instrumentation is better than any conservative or alternative treatment ever devised and Weiss knows it. He is being churlish. He is scaring the bunnies while not having a effective alternative to offer them. If surgery is worse than no surgery for most people who get it then they wouldn't be getting it. QED. This isn't hard.

Surgery is the only game in town for many folks. And Weiss won't admit it perhaps because he is pushing a brace and PT.

There you go.

Reality. More than just a good idea.

Pooka1
06-11-2010, 05:37 AM
Because those with an interest in obfuscation. USE facts to hide.

Are you alleging a huge conspiracy involving all surgeons to hide facts about surgical outcomes?

Is that rational?

Pooka1
06-11-2010, 05:44 AM
As I said at first go, my fondest wish is that these painful contentions can be WELL debunked.

They have been.

Pooka1
06-11-2010, 05:53 AM
But to protest as I am, ought not be regarded as blasphemy!

Blasphemy is an imaginary crime. If you were accused of that I would defend you.

I think at some point you have to realize that the surgeons have the expertise and you (and your insurance company) are paying them for it. You canNOT hope to come up to speed with them on this. I suggest you stop trying.

What you can expect is that they know the score on the ground NOW and relate it to you in an honest and understandable way. Like others who have come on here, you seem to expect blood from a stone. If the surgeons aren't telling you something you want to know then they don't know it themselves. The good surgeons have waiting lists out to months and don't need your business. Really. Get over the conspiracy aspect.

Thirty years ago with the old instrumentation I would still be making identical comments about surgery vice the other treatments. Whatever shortcomings it had then are still better than the alternatives.

And 30 years from now the surgery will look better than what we have now. I think there will be fusionless surgery devised to stabilize spines before they solve scoliosis at the molecular level. And the Weisses will STILL be bellyaching no doubt. We can't choose when we are born and which surgical options are available. All we can do is be realistic. This is beyond some folks here but I don't think it is beyond you.

Back-out
06-11-2010, 10:27 PM
Sharon, patient information can be and needs to be better, much better. There are reasons it's not, but not excuses.
You look to a golden age when scoliosis will be a disease managed at inception; I look to a day when medical information is not proprietary and patients are regarded as having rights to know, which supersede the current business model. It's unsuited to medicine.

The information IS out there. It isn't being collected and made public - yet. This is NOT OK. However, none of this speaks ill of individual talented, dedicated surgeons such as Melissa described who was visibly over-joyed at her good results. Made me tear up.

The system itself is at fault. Seems to be one of many blind spots in our society. Hopefully, this one will be overcome. Meanwhile, my soap box stand would be remiss if I didn't give credit to those doing their utmost to remedy deficiencies. I don't know who may be working behind the scenes, but I know who's working before my eyes.

None can compare to Linda Racine! She has turned her misfortune into an lifetime of dedication to pre-and post-operative patients. I can't imagine her day. I learned recently she's active on at least one other site, and I suspect there's much more. She says she's happy to have gained eight pain-free years from her first operation. As far as I can tell, they've been donated to relieve the pain of others.
She's rendered me priceless assistance in public and private, and the thought that I have caused her distress, hurts.

I fervently hope the flaws of the current record keeping system will be remedied. I feel sure they will soon be much ameliorated. Either way, Linda deserves the immeasurable gratitude of the whole suffering universe of scoliosis patients. I am tilting at windmills but she is in the trenches actively doing something, patient by patient.

And you, Pooka are another, as are so many here - the big voices and the little. This sea of compassion runs deep. My appreciation and admiration for what you all do, is completely separate from my indignation at the "System". I know your hearts are in the right places and you do great good.

I don't want anyone to feel I'm putting down their adored surgeon, nor to rain on anyone's parade. I wish our rights were acknowledged and respected more, but this is a systemic flaw. With few exceptions, most of the doctors described, seem to be doing well. Their best is often nearly miraculous and I hope I can someday join the chorus of personally grateful patients. Meanwhile, I salute all who have been helped and all who have helped them!

This site has probably saved my life. It's provided information I couldn't have otherwise gotten. It's provided support I needed and helped me feel others' pain, thus reducing my own (and without side effects! :p).

I joined the day I found I was unable to travel to my only High School Reunion because of pain. (Old friends had even found a place at the first dinner, where I could stretch after a long trip). Being here, helped overcome denial so deep, I drowned it the last 4 years in pain-killers instead of seeking solutions. My situation seemed hopeless. Now it looks bad but possibly remediable, if only for a while. Hope had to come first. I might never have found it. I don't want to dampen anyone else's - only crossing fingers that they don't depend on permanence.

This article highlighted for me the poverty of information about (serious) outcomes and their uncertainty. Doesn't mean good things are impossible! Just that knowing - even making good predictions - IS impossible, as things stand. It also persuasively (to me) suggests that bad outcomes are far more frequent than we have been led to believe, especially given the total pool of surgeons operating.

I was about to go post by post with replies but it seemed a waste of your time and mine. I don't know where this argument originated, really, as I think we see things much the same. Continuing it seems to be giving the wrong message to "the bunnies". My points stand, except that I am NOT going to defend any specific conclusions in the article. Only the unknowability of grave outcomes/complications which they proved for me, and which led me to my own conclusions.

LindaRacine
06-11-2010, 10:54 PM
The information IS out there. It isn't being collected and made public - yet. This is NOT OK.

Can you expand on this? I'm unclear what you're looking for.

Thanks

Pooka1
06-12-2010, 09:11 AM
Back-out, the world of surgical statistics is not relevant to your case. The world of your particular surgeon's statistics is not relevant to your case. These worlds of statistics are just not relevant.

Adults with EDS and a large curve are not likely to have the same outcome as a 13 yo with AIS and a somewhat smaller curve nor a middle-aged Marfan's patient with two curves nor etc. etc. etc. Also, it is very clear from that one POSNA video that some curves are more challenging that others for a variety of reasons. For those it's a crapshoot no matter which surgeon you see.

I think you need to hone in on something close to your situation. This is my point about how the patient presents driving the outcome in some way, irrespective of the surgeon. It is why patient types tend to group (old versus young, etc.) in terms of complications. It isn't random. The one exception is I think infection rate is related to the particular hospital to some extent.

What is relevant is the likely outcome for a person with EDS with your curve type and magnitude. I would search out a surgeon who has done many cases like yours. They, and not the average statistics for all surgeons and all cases, will best inform you of your potential outcome. I suggest you will be waiting a long time to see statistics that relate best to your case. The rest are somewhat irrelevant.

Now for adults with AIS, I think summary stats are available because that is the largest group out there. People in that group can expect some relevant stats I think and there are out there.

The last thing is the ever changing instrumentation. It is improved on a time scale and at a rate that precludes long-term stats before they move on to better instrumentation. So most of the literature is always dealing with historical use instrumentation which is not necessarily relevant to those with new instrumentation. Weiss and the chiro crowd exploit this by eliding that critical point. They have no shame and it makes it look like they don't know what the hell they are talking about. Weiss knows better but the chiros may or may not.

Good luck.

LindaRacine
06-12-2010, 11:38 AM
Here's an abstract that should be of interest:

Spine (Phila Pa 1976). 2010 Jan 15;35(2):219-26.
Revision rates following primary adult spinal deformity surgery: six hundred forty-three consecutive patients followed-up to twenty-two years postoperative.

Pichelmann MA, Lenke LG, Bridwell KH, Good CR, O'Leary PT, Sides BA.

Department of Orthopaedic Surgery, Washington University School of Medicine, St. Louis, MO, USA.
Abstract

STUDY DESIGN: Retrospective study. OBJECTIVE: To analyze the prevalence of and reasons for unanticipated revision surgery in an adult spinal deformity population treated at one institution. SUMMARY OF BACKGROUND DATA: No recent studies exist that analyze the rate or reason for unanticipated revision surgery for adult spinal deformity patients over a long period. METHODS: All patients presenting for primary instrumented spinal fusion with a diagnosis of adult deformity at a single institution from 1985 to 2008 were reviewed using a prospectively acquired database. All surgical patients with instrumented fusion of > or =5 levels using hooks, hybrid, or screw-only constructs were identified. Patient charts and radiographs were reviewed to provide information as to the indication for initial and any subsequent reoperation. A total of 643 patients underwent primary instrumented fusion for a diagnosis of adult idiopathic scoliosis (n = 432), de novo degenerative scoliosis (n = 104), adult kyphotic disease (n = 63), or neuromuscular scoliosis (n = 45). The mean age was 37.9 years (range, 18-84). Mean follow-up for the entire cohort was 4.7 years, and 8.2 years for the subset of the cohort requiring reoperation (range, 1 month-22.3 years). RESULTS: A total of 58 of 643 patients (9.0%) underwent at least one revision surgery and 15 of 643 (2.3%) had more than one revision (mean 1.3; range, 1-3). The mean time to the first revision was 4.0 years (range, 1 week-19.7 years). The most common reasons for revision were pseudarthrosis (24/643 = 3.7%; 24/58 = 41.4%), curve progression (13/643 = 2.0%; 13/58 = 20.7%), infection (9/643 = 1.4%; 9/58 = 15.5%), and painful/prominent implants (4/643 = 0.6%; 4/58 = 6.9%). Uncommon reasons consisted of adjacent segment degeneration (3), implant failure (3), neurologic deficit (1), and coronal imbalance (1). Revision rates over the follow-up period were: 0 to 2 years (26/58 = 44.8%), 2 to 5 years (17/58 = 29.3%), 5 to 10 years (7/58 = 12.1%), >10 years (8/58 = 13.8%). CONCLUSION: Repeat surgical intervention following definitive spinal instrumented fusion for primary adult deformity performed at a single institution demonstrated a relatively low rate of 9.0%. The most common reasons for revision were predictable and included pseudarthrosis, proximal or distal curve progression, and infection.

PMID: 20038867 [PubMed - indexed for MEDLINE]

titaniumed
06-12-2010, 12:11 PM
http://www.researchchannel.org/prog/displayevent.aspx?rID=31081&fID=345
This might be of some interest.
Enjoy
Ed

Back-out
06-12-2010, 12:46 PM
Here's an abstract that should be of interest:

Spine (Phila Pa 1976). 2010 Jan 15;35(2):219-26.
Revision rates following primary adult spinal deformity surgery: six hundred forty-three consecutive patients followed-up to twenty-two years postoperative.

Pichelmann MA, Lenke LG, Bridwell KH, Good CR, O'Leary PT, Sides BA.

Department of Orthopaedic Surgery, Washington University School of Medicine, St. Louis, MO, USA.
Abstract....

PMID: 20038867 [PubMed - indexed for MEDLINE]
Right. I've studied that research backward and forward, beginning from where you linked it in the Revisions sub-forum.

I referred to it several times in rxes to these two threads. It's an example of what I'd like to see much more of, along with meta studies linking many institutions.

from article intro:

To analyze the prevalence of and reasons for unanticipated revision surgery in an adult spinal deformity population treated at one institution.

This is conspicuous in its onliness (except AFAIK the CA study) highlighting the absence of similar ones.
And not only similar, but as I said, we need meta-studies giving a national overview BY DEMOGRAPHIC AND OTHER SCRIPTORS.

There's no other way we can predict and understand. I refer to Lenke all the time. This is one of the reasons I have great hopes of what he will do with his SRS presidency.

I remember too, that the meaning of this article and its "companion" piece the longitudinal CA study were compared a good deal earlier - the meaning of age, etc., in LT results. This piece is one of the reasons I have fears abt my paticular demographic modified by individual factors. That's especially so since this is one of/the best places to go (OTOH Lenke takes a more problematic patient group. Don't know abt Bridwell)

PS Didn't answer your earlier Q yet as my PC is dying and reviving periodically. Banged on the CTRL key a good deal (as I've seen my son do! hehehe expertise is great) and got it to respond for now...FWIW my rx is entirely a matter of excerpting earlier posts as I answer that question several times, more or less concisely, throughout.

mamamax
06-12-2010, 01:24 PM
http://www.researchchannel.org/prog/displayevent.aspx?rID=31081&fID=345
This might be of some interest.
Enjoy
Ed


Excellent find Ed .. just excellent. Thank you!

Back-out
06-12-2010, 04:37 PM
http://www.researchchannel.org/prog/displayevent.aspx?rID=31081&fID=345
This might be of some interest.
Enjoy
Ed
Looks very interesting. As it is close to an hour, I haven't had time to watch it though I read all descriptive notes. I am struck by the fact that it appears to deal with spinal surgery, as a type.

One help in getting what I want will naturally be the government itself.

This reminds me to mention this important issue. I said elsewhere I was "tilting at windmills". Not really. Since spinal surgery - the more complex, the truer - is the most expensive single health problem facing the health-care industry, the govt. has a STRONG interest in addressing its efficacy for cost control. (Alzheimer's and long-term care cost more, but they don't involve a single treatment choice).

Why should they want to pay for surgery which is not only massively expensive, but which may lead to disability and further surgery down the line? Even if it leads to aggravated need only a significant percentage of the time, it will still be cause for govt. concern and probable intervention.

Except for people enabled by surgery to remain in the taxpaying workforce (the higher the bracket, the more worthwhile) - outcome research showing net increased cost, could, probably WILL - mean approving far fewer operations under Medicare, maybe even for younger adults covered by govt. programs. I wonder what the "Minimal H-care standards" list will eventually include re covered spinal treatments and what the criteria for qualification will be!

Outcome-based treatment research is a two-edged sword.

Even with Medi-gap coverage ("Advantage" plans appear on the point of being phased out), those who depend on Medicare and other plans, are likely to be faced with having coverage for a growing list of procedures DENIED! Depending on what such quantitative rsx reveals, patients risk having treatment/surgery denied if and when the total cost to the System proves to be "not worth it" - and not according to the pt's preference!

With spinal surgery this will necessarily mean examining the total cost, including over time. The cost of more surgery or pt disability, must be factored into the equation - not merely the initial high outlay. This research is bound to happen because of cost factors, not to please patients like me. Besides, it is largely a matter of data collection and organization (i.e., cheap) rather than actual clinical research.

If patients DO turn out to fare worse globally, bad things will happen to our choices! This is truest, of course, of older patients like me who may not be deemed to be worth "fixing" temporarily, especially, if it looks like we will need more surgery when we are even older and less able to withstand the rigors.

I argue the need for "meta-studies", to facilitate OUR most informed choices - not those of the actual payers, govt or not. :cool: Nevertheless, this research and the figures emerging from it, are certain to be used as rationales to remove choice from our hands, especially for seniors. :(

UGH. But after all, the value of complex spinal surgery is really THE classic issue of possibly "wasted" late-life care, in the utilitarian sense that appears to be the guiding principle of Obama's savings plan. To reiterate, I don't refer, of course, to children/adolescents nor to younger adults, but to older adults; moreover, as Pooka points out elsewhere, their medical outcomes are qualitatively better than those of older adults who have complex problems in correction and recovery.

Back-out
06-12-2010, 04:39 PM
Quality of life measures are well and good, but if the life at stake is not still paying into the system, it is bound to be discounted especially if the enhancement is temporary - worse, if it leads to more costs later on. :(

I care about experienced pain and disability. The govt cares about what that pain and disability costs. As I remarked elsewhere, it's a good thing that narcotic pain relief is still fairly taboo in Medicine (ye old Puritan Ethic), but I predict sorrowfully that this will become a hotly debated topic as time goes on. Just as lower class mental health patients are increasingly medicated - even forcibly - with powerful drugs to control symptoms (instead of costly talking therapy and residential programs), so I predict, there will be an "enlightenment" at the top about the wonders and worthwhileness of permanent narcotic pain relief for spinal problems.

Perhaps this will coincide with legalization of numerous presently controlled substances, thus leading to almost unimaginable savings in the federal /state budgets by eliminating the problem of prosecuting and housing drug offenders. At the same time, the government may be able to take over drug sales including a sales tax! "Follow the money" would predict this as a certainty, following the Scandinavian model , and necessitated by the Deficit. Popularization of this approach is also predicted by the coming of Age of Gen X-ers as they're confronted by the cost of Elder Care and a to-them outdated Ethos against illicit drugs, especially when the cost factor for them is fully grasped.

This also fits in with the so-called increased choice model about end of life treatments which are already in force de facto, whereby morphine is used to provide an accelerated "death with dignity". I've seen this first hand twice already and read abt its use much more, in connection with an elderly friend.

Here too, the issue for individuals is choice; for the System, the issue is cost. If "the price of liberty is eternal vigilance", perhaps I need to look ahead to the unintended consequences of what I advocate!

The need for more outcome based research is not just of interest to patients, but society/the govt., because of the cost factor. If indeed, this MOST expensive operation proves to have, on balance (economically) a negative value, it will be out the window, at least for older adults. When I asked whether given surgeons accept Medicare, all those participating underlined their affirmative reply, with a resounding: "FOR NOW!"

Back-out
06-12-2010, 04:42 PM
The alliance between interested patients and govt seems unconflicted when it comes to data collection, but I fear it will split when the question of application/implementation arises. Rational? Sure. Good? I say no, at least, not morally - but then, I have a more than vested interest.

I may end up "sorry for what I wished for", as the saying goes, because I may well get it - with unintended consequences. Then, I won't be able to do individual cost:benefit analyses, and decide accordingly, as it will already have been done for me based on my demographic. My ability to impact my treatment outcomes favorably by my personal skills and ingenuity (such as they are) won't count for anything! :eek:

There's no way to avoid this risk except to try to insure you have good supplementary coverage as you age - nearly impossible, as even top employers switch increasingly to HDSPs (High Deductible Savings Plans) instead of employee health plans. I am afraid approval of scoliosis/complex spinal surgery on older and/or disabled patients, will increasingly be declined even when they are healthy enough for surgery and stand to gain years of increased quality of life. That's because the "QUALIs" (familiar with this term? BRRR) calculus will not favor the expense, taken as a treatment whole.

This study, at a guess, much favors spinal surgery. That's because I see that Washington U plays host, and a keynote speaker is Swedish. What's more, spinal surgery per se, is far cheaper than the subset of complex spinal surgery, especially with instrumentation as in scoliosis surgery. Recovery and complications I expect are qualitatively different too (better), for the larger set.

Let's see what happens later, with further studies. All our debates here will be moot when the cost factor - THE major social driver - replaces our personal calculi! However, we WILL get answers.

LindaRacine
06-12-2010, 06:13 PM
Right. I've studied that research backward and forward, beginning from where you linked it in the Revisions sub-forum.

I referred to it several times in rxes to these two threads. It's an example of what I'd like to see much more of, along with meta studies linking many institutions.

from article intro:


This is conspicuous in its onliness (except AFAIK the CA study) highlighting the absence of similar ones.
And not only similar, but as I said, we need meta-studies giving a national overview BY DEMOGRAPHIC AND OTHER SCRIPTORS.



Would you feel comfortable with the cancer research you refer to if it contained treatments going back to the 60's?

If you want a cross section, do a PubMed search on "Spinal Deformity Study Group." There are 31 centers around the world contributing data.

LindaRacine
06-12-2010, 06:28 PM
This study, at a guess, much favors spinal surgery. That's because I see that Washington U plays host,

Just an observation... there's a world of difference between the University of Washington (from Ed's link) to Washington University (think Larry Lenke and Keith Bridwell).

Back-out
06-12-2010, 06:47 PM
Just an observation... there's a world of difference between the University of Washington (from Ed's link) to Washington University (think Larry Lenke and Keith Bridwell).
ARGH!

I briefly wondered abt that but after a session of re-pounding CTRL, forgot to check!

:p

Back-out
06-12-2010, 07:09 PM
Would you feel comfortable with the cancer research you refer to if it contained treatments going back to the 60's?
You know the answer. But somehow they come up with good prediction charts including reasonable probability of error figures.

Maybe because the numbers are greater.

However, they DO look at older mortality figures when (as all too often) it hasn't substantially changed as in certain cancers - eg., adv. lung cancers (depends cell type) and pancreatic cancer.


If you want a cross section, do a PubMed search on "Spinal Deformity Study Group." There are 31 centers around the world contributing data.
Thank you! Will do!! :)

Pooka1
06-12-2010, 07:54 PM
http://www.researchchannel.org/prog/displayevent.aspx?rID=31081&fID=345
This might be of some interest.
Enjoy
Ed

Excellent post, Ti Ed. Very apt.

Pooka1
06-12-2010, 08:03 PM
If patients DO turn out to fare worse globally, bad things will happen to our choices! This is truest, of course, of older patients like me who may not be deemed to be worth "fixing" temporarily, if it looks like we will need more surgery when we are even older and less able to withstand the rigors of revision surgery.

Non-scoliosis-related fusion may well go that way. Fusions for scoliosis in adults and children will never not be covered because they are the only game in town that has shown any efficacy whatsoever.

If they start limiting fusions for scoliosis patients in certain categories (progressive, painful, etc.) you are going to break the bank with torts for malpractice, wrongful death, etc.. Fusion is the only game in town and it is unconscionable to deny people the only hope out there.

Back-out
06-12-2010, 09:20 PM
Non-scoliosis-related fusion may well go that way. Fusions for scoliosis in adults and children will never not be covered because they are the only game in town that has shown any efficacy whatsoever.

If they start limiting fusions for scoliosis patients in certain categories (progressive, painful, etc.) you are going to break the bank with torts for malpractice, wrongful death, etc.. Fusion is the only game in town and it is unconscionable to deny people the only hope out there.

The age bit, the age bit, Sharon...It's only for seniors (except for Congresspersons and families, etc.) See? "No one" gets hurt :rolleyes:

hdugger
06-12-2010, 10:18 PM
Old people are a reliable (and vocal) voting block. They're in no risk of having their access to medical procedures reduced.

Poor and young are the people who have reduced access. For scoliosis, the young have Shriners as a safety net. That leaves the poor and uninsured.

leahdragonfly
06-12-2010, 10:56 PM
[QUOTE=Back-out;101302]. Since spinal surgery - the more complex, the truer - is the most expensive single health problem facing the health-care industry, the govt. has a STRONG interest in addressing its efficacy for cost control.

Hi Back-out,

Do you have a reference for this statement? I work in interventional cardiology, and with heart disease the number one killer of Americans, I would argue that cardiac care adds up to a much greater expense each year than spine surgery. And don't forget diabetes...and smoking-related illnesses, etc.

I bet spine surgery for scoliosis is a drop in the bucket compared to some of these.

Just something to keep in mind.

hdugger
06-12-2010, 11:30 PM
I *think* she means the most expensive single event. So, not the biggest slice of medical expenditures (it couldn't be - too few people), but the most expensive single procedure.

I don't know if that's true, btw, but I think that's what she meant.

LindaRacine
06-12-2010, 11:36 PM
This thread has gone off track, but the healthcare cost issue is definitely interesting. At UCSF, we routinely do deformity surgeries that probably cost in the neighborhood of $300,000-$500,000, on 70 and 80 year olds. Without these surgeries, these people would probably have no quality of life. But, the cost per quality adjusted life-year is huge. With the aging of the population, the government is looking very hard at expensive treatments.

Back-out
06-13-2010, 12:26 AM
This thread has gone off track, but the healthcare cost issue is definitely interesting. At UCSF, we routinely do deformity surgeries that probably cost in the neighborhood of $300,000-$500,000, on 70 and 80 year olds. Without these surgeries, these people would probably have no quality of life. But, the cost per quality adjusted life-year is huge. With the aging of the population, the government is looking very hard at expensive treatments.
egzackly. :cool:

And I misspelled the key term.

A "Qaly" IS a "quality adjusted life-year " as Linda wrote it out. Even though Daschle didn't win approval, the term he introduced to the conversation is IN. Scoli surgery for seniors is unlikely to fly for much longer - not through govt-sponsored plans, anyhow.

It will be terrible also for younger pts like me too, if outcomes research shows that revisions are a built in expectation, especially for elders. If the govt Healthcare Commission (to be established) approves an initial surgery for "young seniors" (~ early to mid sixties), they may be seen as obligating themselves for a later revision; thus endangering approval for ALL. It's also worrying what may happen to ANYONE subject to a government plan, when seeking primary OR revision surgery.

Maybe others too, depending on what is included in the yet-to-be-drafted minimum procedure/treatment coverage list, to be required of all insurance plans. Again, it may be a multiple procedures cost calculation with a probability coefficient attached to the second one. Let's suppose ( I suspect it's so) that scoli ops for anyone surviving long enough, are basically temporizing, especially for elders with multiple complicating conditions. That would mean approving an op known to cost at present 1/3 to 1/2 million per Linda's report which corresponds to figures I've been given. Doubling that would make a person's life cost close to a cool million, and if that person is already older...

These are the "unintended consequences" of which I speak. But this was really built into Obama's plan. Rationing is a given, long in force (think organ transplants),

Per same model, Avastin for macular degeneration (thanks to which my mom is still able to illustrate books and putter around alone), is proven efficacious. However until a four year hue and cry reversed the Brit ruling - modeled after the same QALY concept - Avastin was only approved after one eye had already gone blind!

This medicine "only" costs a few hundred a month. Luckily (for those unlucky enough to already have it), macular degeneration is relatively common. Just how common are major spinal deformities and what is the per/patient cost for surgery - including recovery? What is the mortality rate of pt. and/or correction? We don't have much of a lobby, based on sheer numbers and "other people's pain" is always easier to bear. Get ready to picket - walkers and all!

jrnyc
06-13-2010, 12:01 PM
i think folks are making much ado about little...

revision surgery is not a given...those who have first surgeries to sacrum seem less likely to need revision at all......and alarming predictions that are unlikely to come true are not useful...the sky is not falling! :rolleyes:

jess

Back-out
06-13-2010, 12:15 PM
To Pooka, re thoughts abt practitioner/industry interest in cost:benefit and other outcomes research on complex spinal surgery.

This is a summary of a recent story and lead editorial in the AMA Journal on the subject (here it is specifically abt surgery with instrumentation for spinal stenosis, but being much cheaper, the points hold even more strongly abt scoliosis surgery):

What, you might ask, is positive* about that story? What is positive is that it is the lead article in the JAMA and that there is an editorial by Jay Lemery which neither apologizes for or rationalizes the findings. The conclusions, in fact, of the editorial are that patients and surgeons and payors need to carefully assess the value and risks of new technologies, and that market forces, such as they are, do not favor careful assessment

http://whyisamericanhealthcaresoexpensive.blogspot.com/2010/04/more-indications-of-positive-change.html

* Note, "positive" is from the POV of the site making the comment - dedicated to cost-containment in medicine. It's NOT "positive" by me!

LindaRacine
06-13-2010, 12:28 PM
To Pooka, re thoughts abt practitioner/industry interest in cost:benefit and other outcomes research on complex spinal surgery.

This is a summary of a recent story and lead editorial in the AMA Journal on the subject (here it is specifically abt surgery with instrumentation for spinal stenosis, but being much cheaper, the points hold even more strongly abt scoliosis surgery):

What, you might ask, is positive about that story? What is positive is that it is the lead article in the JAMA and that there is an editorial by Jay Lemery which neither apologizes for or rationalizes the findings. The conclusions, in fact, of the editorial are that patients and surgeons and payors need to carefully assess the value and risks of new technologies, and that market forces, such as they are, do not favor careful assessment

http://whyisamericanhealthcaresoexpensive.blogspot.com/2010/04/more-indications-of-positive-change.html

The issue of decompression vs. fusion has been hot for at least the last year. I don't know which side is right, but I can tell you that a large percentage of the revision surgeries done at UCSF have had previous decompressions. I'm sure that decompressions work for many situations, but unfortunately not every surgeon is capable of knowing when it's better to do a fusion.

--Linda

Confusedmom
06-14-2010, 10:33 PM
revision surgery is not a given...those who have first surgeries to sacrum seem less likely to need revision at all......

Jess,

I'm curious about this issue of fusion to the sacrum. I am getting told by my docs that fusion to the sacrum actually carries a higher risk of need for revision for me (age 38). They would expect the fusion to fracture at some point in my life. They are saying it's better to go to L5 and hope that I don't ever have to fuse below that (although it's a real possibility that I might). Have you been told differently?

Evelyn

LindaRacine
06-14-2010, 11:18 PM
revision surgery is not a given...those who have first surgeries to sacrum seem less likely to need revision at all......

Jess,

I'm curious about this issue of fusion to the sacrum. I am getting told by my docs that fusion to the sacrum actually carries a higher risk of need for revision for me (age 38). They would expect the fusion to fracture at some point in my life. They are saying it's better to go to L5 and hope that I don't ever have to fuse below that (although it's a real possibility that I might). Have you been told differently?

Evelyn
Hi Evelyn....

I don't think I've heard that. There's no shortage of research on the subject. Here are some of the references:

Spine (Phila Pa 1976). 2010 Apr 9. [Epub ahead of print]
Risk Factors of Sagittal Decompensation After Long Posterior Instrumentation and Fusion for Degenerative Lumbar Scoliosis.

Cho KJ, Suk SI, Park SR, Kim JH, Kang SB, Kim HS, Oh SJ.

From the *Department of Orthopaedic Surgery, Inha University Hospital, Incheon, Republic of Korea; and daggerSeoul Spine Institute, Inje University Sanggye-Paik Hospital, Seoul, Republic of Korea.
Abstract

CONCLUSION.: Sagittal decompensation is common after long posterior instrumentation and fusion for degenerative lumbar scoliosis. It is mostly associated with complications at the distal segments, including pseudarthrosis and implant failure at the lumbosacral junction. Restoration of optimal lumbar lordosis and secure lumbosacral fixation is necessary especially in patients with preoperative sagittal imbalance and high pelvic incidence in order to prevent sagittal decompensation after surgery.

PMID: 20386505 [PubMed - as supplied by publisher]

Eur Spine J. 2009 Apr;18(4):531-7. Epub 2009 Jan 23.
Arthrodesis to L5 versus S1 in long instrumentation and fusion for degenerative lumbar scoliosis.

Cho KJ, Suk SI, Park SR, Kim JH, Choi SW, Yoon YH, Won MH.

Department of Orthopaedic Surgery, Inha University Hospital, Inha University, 7-206, 3-Ga, Sinheung-Dong, Jung-Gu, Incheon 400-130, Korea.
Abstract

For the patients with sagittal imbalance and lumbar hypolordosis, L5-S1 should be included in the fusion even if L5-S1 disc was minimal degeneration.

PMID: 19165507 [PubMed - indexed for MEDLINE]

Spine (Phila Pa 1976). 2007 Nov 15;32(24):2771-6.
Thoracolumbar deformity arthrodesis stopping at L5: fate of the L5-S1 disc, minimum 5-year follow-up.

Kuhns CA, Bridwell KH, Lenke LG, Amor C, Lehman RA, Buchowski JM, Edwards C 2nd, Christine B.

Department of Orthopaedic Surgery, University of Missouri, Columbia, Missouri, USA.
Abstract

CONCLUSION: Advanced L5-S1 DDD developed in 69% of deformity patients after long fusions to L5 with 5 to 15 year follow-up. SAD frequently results in significant positive sagittal balance at a minimum 5-year follow-up. Long fusions to the upper thoracic spine down to L5 and circumferential fusion may further promote subsequent L5-S1 disc degeneration.

PMID: 18007259 [PubMed - indexed for MEDLINE]

Neurosurg Clin N Am. 2007 Apr;18(2):281-8.
The selection of L5 versus S1 in long fusions for adult idiopathic scoliosis.

Swamy G, Berven SH, Bradford DS.

Department of Orthopaedic Surgery, University of Calgary, Foothills Hospital, Calgary, Alberta, Canada. gswamy@ucalgary.ca <gswamy@ucalgary.ca>
Abstract

Complications with fusion to L5 include possible loss of fixation and subsequent disc degeneration at L5-S1, however, leading to possible pain and loss of sagittal balance and the need for revision surgery. To date, the functional consequences of an open disc space beneath long constructs remain poorly defined, and there is no firm evidence in the literature guiding the surgeon's choice. The issues and evidence guiding the decision to fuse to L5 or S1 are examined in this article.

PMID: 17556129 [PubMed - indexed for MEDLINE]

jrnyc
06-14-2010, 11:28 PM
ummmmm...hey Ev...was told by several surgeons that i need fusion to pelvis...that fusion to sacrum wouldnt even be solid enough for me..

also...have seen on forum and was told by surgeons as well that when in doubt about going to L5 or sacrum, they weigh
several factors, including disc problems, etc...but if there is doubt, often the fusion to sacrum is chosen as safer for the future of the individual's spine...

jess

diane2628
06-15-2010, 09:12 PM
I will just add a few points, from my humble perspective as someone who a) had fusion surgery 10 years ago and am fine, and b) works as my state's director of patient safety and has done a fair amount of research on available data related to clinical outcomes:

1) any article in a non-peer reviewed journal is immediately slightly suspect (or at least not to be as highly regarded as that in a peer-reviewed publication)
2) any article by someone who advocates for and is employed by a company that specializes in a different treatment for a condition, then writes about why the competing treatment modality is bad, is immediately much more suspect. Just a little conflict of interest there!
3) many of the complications they cite (UTI, blood loss, infection, death) are complications/risks for ALL surgeries. In addition, in many cases they mention a type of complication as though it is common, without discussing rates or sample sizes in the studies they reference, nor do they provide any reference to complication rates for other types of surgery as a benchmark.
4) Given that many people don't seek surgery until their scoli is pretty far advanced and they are already having lots of pain, post-op pain is an unsurprising complication.
5) These complications are exactly what my surgeon told me about 10 years ago, before my surgery. He even said that 20% of patients need some sort of follow-up procedure within 10 years. Given that and the wealth of research (of varying quality), I don't think anyone is trying to hide any of this information.
6) Their recommendation is that people only try surgery after trying other, non-surgical methods first. But are there many of us who have NOT done exactly that?

LindaRacine
06-15-2010, 10:09 PM
I will just add a few points, from my humble perspective as someone who a) had fusion surgery 10 years ago and am fine, and b) works as my state's director of patient safety and has done a fair amount of research on available data related to clinical outcomes:

1) any article in a non-peer reviewed journal is immediately slightly suspect (or at least not to be as highly regarded as that in a peer-reviewed publication)
2) any article by someone who advocates for and is employed by a company that specializes in a different treatment for a condition, then writes about why the competing treatment modality is bad, is immediately much more suspect. Just a little conflict of interest there!
3) many of the complications they cite (UTI, blood loss, infection, death) are complications/risks for ALL surgeries. In addition, in many cases they mention a type of complication as though it is common, without discussing rates or sample sizes in the studies they reference, nor do they provide any reference to complication rates for other types of surgery as a benchmark.
4) Given that many people don't seek surgery until their scoli is pretty far advanced and they are already having lots of pain, post-op pain is an unsurprising complication.
5) These complications are exactly what my surgeon told me about 10 years ago, before my surgery. He even said that 20% of patients need some sort of follow-up procedure within 10 years. Given that and the wealth of research (of varying quality), I don't think anyone is trying to hide any of this information.
6) Their recommendation is that people only try surgery after trying other, non-surgical methods first. But are there many of us who have NOT done exactly that?

Well done Diane.

Confusedmom
06-15-2010, 10:46 PM
Linda, Jess,

Thank you. This is excellent info. that I will definitely transform into some kind of question(s) for Dr. Bridwell later this month.

Dr. Pernendu Gupta in Chicago definitely told me last week that the biggest point of debate in my surgery would be fusion to L5 vs. sacrum. He said in the case of younger(ish!) age and healthy L5 disk, he would highly recommend fusion to L5 because of likelihood of breaking the fusion to sacrum throughout the course of my life. "You're still young; you're active." He did say there's a reasonable likelihood of disk degeneration at L5 that would necessitate extending the fusion later in life. My Indy doc also recommended stopping at L5 because of concern of fracture as well as greater tendency toward pseudoarthrosis if it was extended to sacrum. That seems to be contradicted by the studies Linda cites, so I will definitely get more opinions on this.

Thanks again for the info.; I'll let you know what I find.

Evelyn

jrnyc
06-15-2010, 10:59 PM
hi Ev
do you have disc problems that would necessitate going to sacrum?

jess

Confusedmom
06-15-2010, 11:04 PM
Jess,

L5 disk is healthy; L3 & L4 not so much. So apparently, no, disk problems don't necessitate going to sacrum.

Is a bad L5 disk typically the determining factor as to whether you fuse to the sacrum?

Evelyn

jrnyc
06-16-2010, 12:08 AM
several surgeons have told me that...said my spine would not be stable without going all the way down...my L's are bad 1-5...just a mess back there...listhesis, rotation, but worst is stenosis, arthritis, and degenerative discs...all in lower lumbar!
:rolleyes:

jess

CHRIS WBS
06-16-2010, 12:24 PM
Dr. Pernendu Gupta in Chicago definitely told me last week that the biggest point of debate in my surgery would be fusion to L5 vs. sacrum. He said in the case of younger(ish!) age and healthy L5 disk, he would highly recommend fusion to L5 because of likelihood of breaking the fusion to sacrum throughout the course of my life. "You're still young; you're active." He did say there's a reasonable likelihood of disk degeneration at L5 that would necessitate extending the fusion later in life. My Indy doc also recommended stopping at L5 because of concern of fracture as well as greater tendency toward pseudoarthrosis if it was extended to sacrum. That seems to be contradicted by the studies Linda cites, so I will definitely get more opinions on this.

This surprises me. Before my surgery, through a co-worker I was put in touch with a woman a few years younger than me who had surgery back in the early 70s by Dr. Ronald DeWald (the big Chicago scoli doc at that time; Dr. Neuwirth acknowledges him in his book). I spoke to this woman and was astonished to hear that despite an older surgery with Harrington rod instrumentation and a long fusion to the sacrum, she led a very active lifestyle including roller-blading and long-distance cycling. She’s had a few bad falls over the years but nothing that disturbed her fusion until recently. About the time of my surgery, she was hit by a car while cycling and thrown from her bike. She suffered a broken knee cap and 9 fractures to her fusion. Her spine was re-instrumented and last I heard, after a long rehab, she’s ready to resume cycling against her doctor’s orders. It took quite a whammy to crack her old fusion with older instrumentation. If anything, I would think it would be us older broads with thinning bones that are at higher risk for cracks to our sacrum fusions.

Confusedmom
06-16-2010, 09:30 PM
The only explanation I can think of for the discrepancy is just the number of decades that would wear on that fusion to sacrum. Maybe this is why they keep telling me they might do it later.

Plus the (perhaps incorrect) assumption that at 38 I will be more active than someone a couple of decades older. (What's up with all you 50 and 60 somethings that dance, rollerskate, skydive, etc., anyway? I'm so impressed--I consider it a good day if I can get myself on an exercise bike!!)

What an awful accident that happened to your acquaintance, Chris. I'm glad she made it through okay!!

Evelyn

Lorraine 1966
06-17-2010, 04:12 AM
Well, hey I am patting myself on the back here.I am 60 next year, am now 44 years post op, someone should do a study on me. (Joking) I think most of my pain is DDD from below fusion and a touch of osteoarthritis thrown in probably a bit of compression too. But I have a had such a full life, you would not believe it. Moved house by myself 22 times, packed it all the lot. Have worked for 30 years, blah blah blah. Count myself one of the lucky ones.

Lorraine.

LynetteG
06-17-2010, 06:30 AM
Fantastic Lorraine - that's the kind of post I LOVE to read :)

Confusedmom
06-17-2010, 09:36 PM
That's awesome! Lorraine, you should definitely post this on the jouvenile thread so some parents can see how well someone who had surgery at 15 (if I'm doing my math right) is doing 44 years later!

Evelyn

Lorraine 1966
06-21-2010, 11:43 PM
Thank you all so much, wow I just feel great now, this forum is just so wonderful. The people on here are pretty much that way as well.

It does help all of us I think to hear from all types of people all over the world . That is how we learn and help to make our decisions as far as our scoliosis is concerned.

All the very best
Lorraine. xx