Journal article focusing on surgical complications

[LindaRacine]

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]

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I'm very glad to hear this journal is not peer-reviewed (who would the peers be?).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]

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]

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]

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]

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]

As I said at first go, my fondest wish is that these painful contentions can be WELL debunked.

They have been.

[Pooka1]

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]

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! ).

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]

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]

Cutting to the chase

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]

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]

Perspectives on Evidence-Based Medicine in Spine Surgery

http://www.researchchannel.org/prog/...=31081&fID=345
This might be of some interest.
Enjoy
Ed

[Back-out]

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]

http://www.researchchannel.org/prog/...=31081&fID=345
This might be of some interest.
Enjoy
Ed

Excellent find Ed .. just excellent. Thank you!