Article for adults considering surgery

[Back-out]

Additionally, what exactly are the measures of success? Cancer really has only two: are you still alive, and have you had another occurrence of cancer.

Disagree. Remission is the key! Very few cancers are cured outright. Cancer is increasingly considered a chronic disease, much like scoliosis. "Remission" - of pain and disability - is what spinal pts want to know too. It's very comparable. In fact, that's how I'm trying to construe this surgery now! Helps me accept.

What would be the equivalent, clear measures for a scoliosis patient? Neither the surgery or the disorder is likely to kill them, and it would just be a judgement call when you measured an "occurrence" after the original surgery. Is an occurrence the onset of pain? Is it some additional curving? How much? Is it the need for revision surgery.

All the above and more.

[Back-out]

I don't mean to let orthopedic surgeons off the hook - their literature is a real mess. But, they're also dealing with a very messy area for which crystal clear measures simply don't seem to be available.

We need and deserve more information. It's out there. It's just not being rigorously collected and presented in meta-form OR by surgeon/facility (and sorry, docs, we have a right to know your track record!). That's all still in fairyland with the current proprietary business model, though that's not where it belongs. Who wants to be operated on P/A at a facility with double the national average for MRSAs? I figure those days between procedures, the patient is THE most vulnerable to infection. (Not to mention, if the hospital has a propensity to hygiene lapses).

This is a "no excuses" area, where the problem is that the current acceptable norms (doctor's privacy rights) supersede patients right to know for self-protection. Does not help that the well-known medical cabal protects even egregious offenders in all fields. My area suffered for years from the apocryphal alcoholic anesthetist no one turned in!

Anyhow, I believe the comparison to CA protocols is more valid than not and besides, such available outcomes research exists in ALL area but this. The reason is not that this is an "ineffable" area of Medicine. Au contraire, we're being "effed" because unacceptable discretion is regarded as normal. We're just used to it, and so we don't protest. We must! But first we need to realize we're being screwed - and not just our spines.

[Pooka1]

I'm not sure you can make this kind of comparison. Cancer treatment can be measured in a way that spinal surgery simply cannot. That's clearly true of chemotherapy, which can be precisely reported as to medicines/amounts/dates, etc. And it's largely true even of surgical procedures, where they can get a pretty good sense whether or not they've removed the mass of a tumor.

But . . . orthopedic surgeons are still struggling to figure out exactly how to precisely describe their procedure and measure immediate post-op success. "Fusing the spine" means completely different things, based on the surgeon, patient, tools, exact size and location of curve, etc. Measuring success after surgery, how do you know if you've fused the correct number of vertebrae? How do you know if the sagittal balance is correct? None of those things are immediately measurable immediately after surgery. You only know if it's really right many months or even years down the road.

Additionally, what exactly are the measures of success? Cancer really has only two: are you still alive, and have you had another occurrence of cancer.

What would be the equivalent, clear measures for a scoliosis patient? Neither the surgery or the disorder is likely to kill them, and it would just be a judgement call when you measured an "occurrence" after the original surgery. Is an occurrence the onset of pain? Is it some additional curving? How much? Is it the need for revision surgery.

I don't mean to let orthopedic surgeons off the hook - their literature is a real mess. But, they're also dealing with a very messy area for which crystal clear measures simply don't seem to be available.

Nice post, well reasoned.

[mamamax]

Rohrer01 - Personally, I do not think the information you shared with us is garbage. Surgery is a serious decision and the more information anyone has about it prior to going into it - the better. Certainly not everyone will experience serious complications, but some will - the literature supports that .. and as patients we should be aware of things that could possibly be avoided - or to quickly identify when something has gone wrong and needs immediate attention. Like this: http://jmedicalcasereports.com/content/2/1/9

[Pooka1]

It's true that chemotherapy and radiation have easier scriptors than spinal surgery. However, there is little more measurable than the a architecture of scoliosis! We have specific angles for the lateral and sagittal curvature as well as degrees (grades?) of kyphosis, spondylosthesis , and other degenerative conditions.

Radiographic findings often don't correlate with patient satisfaction or pain levels or anything availble to the patient's conscience.

Patients could be described and grouped medically by these factors as well as age, fusion length, and the location of their their primary curve (e.g. mine, being lumbar, seems harder to deal with especially with DDD)

Likewise, degree of correction achieved, degree of correction maintained and complications, could all be quantified and described by category and severity. Also, was the problem corrected non-surgically, was repeat surgery necessary, if so, after what interval? Surgical mortality and estimated contribution to later mortality could all be factored in, along with ratings for quality of life improvement. (There's a disability scale and I'm sure there are others).

Among the top guys, the outcome is likely largely if not completely driven by the presenting condition on the table. The evidence for this is the difference in complication rate between young AIS patients and older ones. Kids tend to sail through this and are comfortably back in the swing of things in a few weeks. Adults, not so much. Also the neuromuscular cases have more complications because they come to the surgeon with more issues.

It's an argument for earlier surgery on younger healthier patients though of course that is not an option for adults now. And yes these kids have to live most of their lives with a fused spine and yes the long term is unknown. But some kids don't have a choice. I think some folks here approach this like everyone has a choice and can rationally refuse surgery. Those people don't tend to have kids whose spine never moved less than 5* a month for several months and who looked like a pretzel.

[Pooka1]

True. And that's exactly what we need to know! As for sagittal balance, I think that's eminently quantifiable. Two pts on this site had a poor outcome there - one underwent successful revision; one is contemplating it. Both knew soon after their first op. I want to avoid their surgeons, especially it they're repeat offenders! Having flatback, I am looking for a surgeon with a good track record on lordosis creation - likewise, good at degenerative disease.

You might at least consider that NO surgeon can fix certain patients. They are not magical. The outcome among the top guys is probably largely predicted by the state of the patient's spine, not anything specific to the surgeon.

Food for thought about delaying surgery.

[Pooka1]

The reason is not that this is an "ineffable" area of Medicine. Au contraire, we're being "effed" because unacceptable discretion is regarded as normal.

That is an extremely clever turn of phrase. I congratulate you.

[rohrer01]

Rohrer01 - Personally, I do not think the information you shared with us is garbage. Surgery is a serious decision and the more information anyone has about it prior to going into it - the better. Certainly not everyone will experience serious complications, but some will - the literature supports that .. and as patients we should be aware of things that could possibly be avoided - or to quickly identify when something has gone wrong and needs immediate attention. Like this: http://jmedicalcasereports.com/content/2/1/9

Thank you, Mamamax. This isn't "my" article, but I know what you meant. The article you shared is scary stuff. I guess for people who read this, it is intended more for those of us in the "elective" category for scoliosis surgery. My curve surely isn't significant enough to be life threatening. I do, however, suffer from pain. Weighing the risk/benefit ratio for people like me is what I intended this thread to be about. Pain can drive a person to insanity!

[Pooka1]

I guess for people who read this, it is intended more for those of us in the "elective" category for scoliosis surgery.

Exactly so. The people who refuse necessary surgery are either dead or extremely debilitated and probably aren't reading fora on this topic.

I think for the most part the elective and necessary groups are well identified by the surgeons. And it is up to the surgeons to convey the necessity of any operation in honest terms along with the likely outcome.

An exception is Weiss who seems to be out there away from the bulk of the top surgeons on these matters. I wonder if he ever did a fusion.