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Thread: How patients overestimate the predicted success of surgery

  1. #16
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    I'm in agreement that surgical patients are overall glad that they had the surgery, I thought Linda summed that up well - did not regret surgery, but still, as the paper suggests, were overly optimistic about exactly how much better they'd feel.

    I'm hesitant to call out any single group of scoliosis patients as guaranteed free from any further pain, revisions, complications, etc. I think any surgeon setting those expectations is doing a disservice to their patients. The Asher paper was really elucidating in this regard. What he said was that even a 20 year followup for these adolescent patients meant that you were looking at people in their 30s and 40s. That's not where the bulk of the problems happen - they happen to people in their 50s and above. Pedicle screws don't have patients who had the surgery in their teens and are now 50 or older. So, the long term outcome is silent. The hardware is certainly designed to address problems seen in previous hardware, but, I think the increasing rate of PJK (also called out by Asher) in these patients suggests that the newer hardware may have properties of it's own that we simply do not yet understand. I think we're all *hopeful* that these kids will go on and live their lives without ever having to visit a forum like this, but I'd be very circumspect about suggesting that there is a known outcome.

    But the question of classification and expected outcome for different types of teen patients raises another question - what are teen surgical patients with a curve that extends into their lumbar spine told is their expected outcome? I had the sense that this was one of those "pediatric surgeon blindness" that we hear of so often on the forum. There's a whole lot of information and concern about where these kids will be when they hit their 18th birthday, but radio silence after that. We had that with my son - all his doctor talked about was keeping his curve below 50 at maturity. Nobody said boo about what might happen after that. Is the same thing happening with teen patients fused into their lumbar spine? Or are they told that they might expect to have additional surgeries down the road?
    Last edited by hdugger; 05-21-2013 at 12:59 PM.

  2. #17
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    Quote Originally Posted by LindaRacine View Post
    See the next sentence of my post (thoracolumbar).
    Oh, I've been using that word wrong all this time. I thought that thoracolumbar referred to a single curve that spanned the thoracic and lumbar areas, and that an S shaped curve with a curve in the thoracic region and another in the lumbar was called a double curve.

  3. #18
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    Quote Originally Posted by LindaRacine View Post
    I believe the vast majority of patients would emphatically say yes. We see this in outcome scores, especially from the SRS questionnaire, where the questions are broken up into categories like pain, function, appearance, etc. Surgery patients routinely have better scores in all domains after surgery. But, only a small percentage of people have perfect outcome scores. And, I suspect that if we could actually question patients that have perfect scores, we'd find there was at least one little thing that would bother most patients.
    This is cognitive dissonance in effect. Specifically, a type called 'effort justification.' When patients undergo a lengthy, difficult, initiation for their outcome, they are more likely to judge that outcome as more positive. This is a widely studied and accepted 'error' in human reasoning. It would be interesting to see if post operative questionnaires showed the same levels of pain, function, and appearance values post op if the surgery was not as invasive.


    http://en.wikipedia.org/wiki/Effort_justification

  4. #19
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    Oh, that's interesting. I knew generally about the idea of cognitive dissonance, but I'd totally forgotten it in this case.

    I googled on "effort justification surgery" to see what came up, and the first thing I came across was a thesis the Institute of Medical Science specifically looking at this in lumbar surgery.

    https://tspace.library.utoronto.ca/b...MSc_thesis.pdf

    Here's a snippet:

    "This study is the first to demonstrate that response shift is present in a cohort of patients
    following spinal surgery. In the properly selected patient, outcomes following surgery for spinal
    stenosis and disc herniation generally show significant improvements at 6 weeks and at 3
    months. This study has shown that response shift can influence the effect size of treatment and
    has implications in the interpretation of outcomes of treatment.

    When looking at the overall cohort, the ODI and SF-36- PCS did have a significant response
    shift. The pattern of response shift in this study was for the majority of patients having a
    retrospective overestimation of their preoperative disability compared to having an
    underestimation of their preoperative disability."

    Basically, you run into problems asking people how much surgery has improved their life, because patients after surgery recall their condition before surgery as being much worse than it actually was.
    Last edited by hdugger; 05-21-2013 at 02:29 PM.

  5. #20
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    Quote Originally Posted by ScoliPrognosis View Post
    Specifically, a type called 'effort justification.' When patients undergo a lengthy, difficult, initiation for their outcome, they are more likely to judge that outcome as more positive.http://en.wikipedia.org/wiki/Effort_justification
    Something similar I thought when I entered in a scoliosis forum for first time years ago. There was not surgical and not surgical sections, so everybody talk about their cases and as almost all of them had surgery I have read tons of posts and I was absolutely astonished reading really dramatic stories of people who always finished saying something as ‘What a good decision I have taken’.
    Last edited by flerc; 05-21-2013 at 02:49 PM.

  6. #21
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    Linda....that is what i thought about adult scoli patients...
    there are just SO many lower back problems in adults...i remember
    Lonner telling me it was common...the nature of aging and all...

    i am sure i had scoli at least as a teen, maybe earlier...though not officially
    diagnosed til age 31, a doctor mentioned it to me at age 18....and i had
    problems in ballet early, i think from balance thrown off from scoli...
    but my problems had always been worst in lower spine....
    current lower curve is 70, while upper is 42.
    diagnosis at 31, though, was brought on by pain in upper spine that
    i described to doctor at time as a "gorilla on my (upper) back"

    jess

  7. #22
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    Well here is for kids... slightly more than half are T curves.

    All 606 cases...

    Type 1, main thoracic (n = 305, 51%)
    Type 2, double thoracic (n = 118, 20%)
    Type 3, double major (n = 69, 11%)
    Type 4, triple major (n = 19, 3%)
    Type 5, thoracolumbar/lumbar (n = 74, 12%)
    Type 6, thoracolumbar/lumbar-main thoracic (n = 17, 3%)

    I found numbers for each curve type for adults in a Lenke paper and posted it to the group several years ago. It was also a many hundred consecutive case study. It may have only included adult AIS and not any other form like degenerative which is mostly lumbar and would account for Linda's observations. My recollection was T curves were still most prevalent but double majors came in second, not fourth as in kids. That's why I think there is a case to be made for untreated T curves involving the lumbar eventually.

    I'll try to find it.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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  8. #23
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    Quote Originally Posted by LindaRacine View Post
    The truth is that the list of potential complications is so long that it's totally unrealistic to cover it all.
    Yowza! Yes, I can see how it would be hard to get through that.

    So, what do they doctors do to set expectations? One thing I noticed with my son's jaw surgery, is that there was a huge amount of realistic information about the near near term (what you'll feel like in the few days after the surgery), then a far less detailed list of a few things you might note in the weeks after that, and then maybe one thing longer term. What I see in the forums is that people are pretty much prepared for a very rough road immediately following the surgery, somewhat prepared for the next few weeks of recovery, and then kind of surprised both at how long the recovery takes and what long term issues they end up with. I suspect that kind of indicates where they got the most info from their doctors (the days immediately after) and where they got the least (how long the recovery is, and where you might realistically end up).

  9. #24
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    Quote Originally Posted by LindaRacine View Post
    I'm surprised about the seeming incidence of thoracic curves. The vast majority of the adult curves at UCSF are lumbar curves. The next largest classification is thoracolumbar. We do know, however, that the patient population at Wash U is about 20 degrees younger on average, than UCSF. I would say that it's rare that adults with thoracic only curves present for surgery.
    I think the numbers I had posted were consecutive surgical fusion cases for kids and adults with AIS. So the issue is what is the curve prevalence among the surgical cases.

    Now it could be that the number of untreated AIS in adults that are finally fused is less than the number of de novo adult degenerative. That could explain why lumbar and TL fusions might be more prevalent in adults than T fusions.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  10. #25
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    Quote Originally Posted by hdugger View Post
    Yowza! Yes, I can see how it would be hard to get through that.

    So, what do they doctors do to set expectations? One thing I noticed with my son's jaw surgery, is that there was a huge amount of realistic information about the near near term (what you'll feel like in the few days after the surgery), then a far less detailed list of a few things you might note in the weeks after that, and then maybe one thing longer term. What I see in the forums is that people are pretty much prepared for a very rough road immediately following the surgery, somewhat prepared for the next few weeks of recovery, and then kind of surprised both at how long the recovery takes and what long term issues they end up with. I suspect that kind of indicates where they got the most info from their doctors (the days immediately after) and where they got the least (how long the recovery is, and where you might realistically end up).
    I'm sure it's different for every patient and every surgeon. I've heard patients say that their doctors promised that they would have reduced pain or that they'd be back at work in x weeks, etc. I've never, however, heard a surgeon actually promise anything. I think we actually do a very poor job of taking in all of the details, so perhaps the complication discussion is fairly worthless in general.

    In regard to recovery rates, we actually know how average adult patients recover from deformity surgery. At 6 weeks they're about the same as they were preop. At 3 months, they're somewhat better than preop. At 6 months, they're a lot better than preop. And, at 12 months, they're actually a tiny bit worse than they were at 6 months. (That's when, I believe, the realization that they're not perfect comes into play.) At 24 months, they're fairly close to where they were at 6 and 12 months. I often talk about the recovery curve to patients, but that can be a double edged sword. Patients who aren't average, can really start to feel hopeless when they realize their recovery is slower than most.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
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  11. #26
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    This is a great discussion and so many valid points made. Having given consent to patients on procedures, yes, as Linda said, clinicians usually talk about the high points or the most problematic outcomes.

    As patients, depending on our stress and pain level, we hear and remember about 10-20% of what was said.

    I have postop problems never listed by my doctor [Left sciatic pain buttocks stabbing pain probably related to my R pelvis being slightly lower than my L]. I am also MUCH better at 6 weeks/2months pain wise than I was preop as I was in A LOT of pain preop.

    Yes, as so many have said, I am impatient to feel 100%....that is what I expect, but that is not reasonable.

    One analogy that I have said: you cannot know BOTH what you would feel like if you had surgery and DID NOT have surgery. For me, with adult degenerative scoliosis, it was certainly looking like a downhill, progressively debilitating direction. I couldn't walk far and had to sit or lay down frequently preop. Who knows, maybe that would not have been true that I would be progressively worse, but the past 2 years have seen me rapidly degenerating. Dr. Hu said that if I waited, that I would have more risk in correction [I am 66] and she could not achieve as good a correction as she could now.

    I don't have any solutions to the questions posed on understanding risk/outcome/expected pain for surgery, but I do believe that it needs more evidence based research. It would be interesting to ask patients preop about their postop expectations on pain and outcomes. This forum has been helpful to me in realizing the very slow rate of recovery that occurs with large spinal fusions.

    So, right now at 2 months postop, I am impatient. I am ready to get on with my active life and not be tied to meds and that awful brace. I want the endurance that I used to have. I am tired of restrictions. I am tired of going to physical therapy. I want to be an active ME, not handicapped Susan with my brace and handicapped parking permit. Thanks for listening to my pity party.

    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  12. #27
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    Well I still can't find the original paper I posted a while ago but I found this which comports with my memory although I have to assume here that the rate of surgery scales with progression...

    Emphasis added

    Natural history/deformity
    At an average of 40.5 years after skeletal maturity 68% of the 133 curves in 102 patients in the Iowa series progressed [23]. Curves initially 30°or less tended not to progress whereas curves more than 30° usually progressed. Single thoracic curves between 50° and 75° were the most likely to progress, an average of 29.4° or about 0.73°/year (29.4°/40.5 years). Others have noted that thoracic curves were the most likely to progress [34]. Additional risk factors for progression of single thoracic curves were those with apical vertebral rotation of more than 30 per-cent and Mehta-angle, a measure developed to differentiate resolving and progressing infantile idiopathic scoliosis [35], of more than 20° [23]. The lumbar components of double major curves were more likely to progress than the thoracic component. Right lumbar apex curves were twice as likely to progress as left apex lumbar curves. Lack of L5 deep seating and greater than 33% apex rotation were risk factors for progression [23].
    http://www.scoliosisjournal.com/content/1/1/2

    Basically we know T curves are most prevalent in kids AND they are most likely to progress. Therefore they are likely the most prevalent curve that is likely to be fused in adult AIS unless the lumbars are just way more painful or something in adult and they therefore jump ahead of T curves in fusion ranks. Also the lumbars increased in the double majors so that may be what puts that curve type higher on the fusion prevalence than it was in kids.

    I am speculating wildly here until I find that article.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  13. #28
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    Quote Originally Posted by jrnyc View Post
    Linda....that is what i thought about adult scoli patients...
    there are just SO many lower back problems in adults...i remember
    Lonner telling me it was common...the nature of aging and all...

    i am sure i had scoli at least as a teen, maybe earlier...though not officially
    diagnosed til age 31, a doctor mentioned it to me at age 18....and i had
    problems in ballet early, i think from balance thrown off from scoli...
    but my problems had always been worst in lower spine....
    current lower curve is 70, while upper is 42.
    diagnosis at 31, though, was brought on by pain in upper spine that
    i described to doctor at time as a "gorilla on my (upper) back"

    jess
    Jess,
    From an anatomical perspective, I would venture to say that the lumbar wears out first (as Lonner, who is infinitely more qualified than me, said) whether a person has scoliosis or not. So for that reason alone, there may be more lumbar fusions. Many of the nonscoliotic lumbar spines that wear out develop degenerative scoliosis, Susan Cook for example. So, while there is scoliosis present, these are not the typical kinds of cases that seem to be targeted by this forum community (although I have seen some cases).

    Another example, my ex developed moderate DDD in his early 30's which led to a mild scoliosis. If he ever had surgery, which was discussed when I was married to him, the term scoliosis NEVER came into the picture at all. We just saw it in an x-ray report.

    So in these cases, is scoliosis the real issue? No. Can it become an issue if the DDD, listhesis, etc. go untreated? Yes. It's my opinion that people that already have lumbar scoliosis would wear out sooner and progress faster simply because the lumbar takes the brunt of our body weight and does a lot of twisting and bending. But I think the two classes, those with no prior scoliosis and those with prior scoliosis, should be separated in terms of progression/surgical outcomes simply because they have different modes of action on them despite natural aging.

    I was told by my surgeon that thoracic cases tend not to progress as fast because they have the support of the rib cage. I hope he was referring to adult cases, otherwise I'd say I would disagree with him based on what I know from actual people with scoliosis.

    I personally know two people with scoliosis who had surgery. Both were left in more pain than before the surgery. Both say that they don't regret having the surgery. One was a severe congenital case, where surgery saved her life because her internal organs were being crushed. They used Harrington rods and I believe she had one revision surgery but despite that is still progressing. She can NOT have another surgery because her lung function is so poor that it would kill her. The other, my DIL, was a typical case of rapidly progressing AIS (like Sharon's daughters). She went from 10* at age 12 to 48* at age 16 despite wearing a brace 23 hours a day for three years. She is in significant pain now, whereas prior to fusion had only minor backache and the sensation to crack her back a lot. Now she may be looking at a revision surgery down the road because one of the lower rods is digging into her lower back muscle making it red and inflamed most of the time. Her neck hurts constantly. So even though she is "happy she had the surgery", she is terrified of going through it again (even for strictly hardware removal), even if there is indication that she will have a better outcome.

    So how do cases like this figure into patient expectations and willingness to go through spinal surgery?
    Be happy!
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  14. #29
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    Quote Originally Posted by rohrer01 View Post
    Jess,I personally know two people with scoliosis who had surgery. Both were left in more pain than before the surgery. Both say that they don't regret having the surgery.
    I might say I have read about hundreds of cases like those. Even people having many surgeries or thinking in having another one. Of course I never criticized them.. what could they say? What they did is done.

  15. #30
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    Quote Originally Posted by rohrer01 View Post

    So how do cases like this figure into patient expectations and willingness to go through spinal surgery?
    I think surgeons have to carefully delineate what is known and unknown about fusion of specific curve types. Problems might be expected for specific curves. The cases you mention may not be surprising to the surgeons. Who knows.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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