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  • #16
    Originally posted by Pooka1 View Post

    Yes and how does that compare to younger age groups with idiopathic scoliosis? Does a higher percentage of people with untreated scoliosis also develop degenerative scoliosis earlier and worse than in people without scoliosis due to the imbalance over time? I wonder what really happens to the people who have curves in the 30s and even 20s over time w.r.t. development of degenerative changes. That might impact treatment decisions.
    As far as I know, there's no really good natural history paper. This is what comes closest:

    Spine (Phila Pa 1976). 1992 Sep;17(9):1091-6.
    Long-term follow-up of patients with untreated scoliosis. A study of mortality, causes of death, and symptoms.

    Pehrsson K, Larsson S, Oden A, Nachemson A.

    Department of Lung Medicine, Renströmska Hospital, Göteborg, Sweden.
    Abstract

    The mortality and causes of death in 115 patients (80 women), born 1902-1937, with untreated scoliosis were compared to the expected according to official Swedish statistics. Subgrouping for cause and onset of scoliosis was done. Fifty-five patients had died; 21 of respiratory failure and 17 of cardiovascular diseases. The mortality was significantly (P less than 0.001) increased. The increased risk was apparent at 40-50 years of age. The mortality was significantly increased in infantile (P less than 0.001) and juvenile (P less than 0.01) scoliosis but not in adolescent scoliosis. The mortality was also increased in post-polio scoliosis, scoliosis combined with rickets and scoliosis of unknown etiology indicating an increased mortality in idiopathic scoliosis. Among the surviving patients anti-hypertensive treatment was frequent (23 of 50).

    PMID: 1411763 [PubMed - indexed for MEDLINE]

    I'll have to check the full paper out and see if they mention the % of people in the control group who ended up with scoliosis. (I just had the thought that some number of people in the control would have had undiagnosed scoliosis when they were young.) There's no great way to know who had no scoliosis when they were younger, unless they have scoliosis films taken as a teenager.

    --Linda
    Last edited by LindaRacine; 07-04-2010, 04:03 PM.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

    Comment


    • #17
      That's a good one for mortality. I wonder what the deal is w.r.t. morbidity. That is, maybe there would be less mincing around with adult cases if it was known that even moderate cases at relatively young ages would all be destined for degenerative scoliosis on top of idiopathic absent fusion surgery. So maybe a case can be made to do fusion earlier on smaller curves if it is known that most/all of these people will need it later for degeneration when they are older and the surgery is dicier.

      And on this general subject of when to fuse due to morbidity if not mortality, I wish there was some way to determine if earlier fusion on less vertebrae will avoid later fusion on more vertebrae. I am haunted by the thought that maybe my kids could have had 4-6 vertebrae around the apex fused instead of 10 vertebrae each. Has anyone ever tried to study this? Maybe they have and maybe the answer is known. Maybe the reason they don't fuse smaller curves is not just the likelihood they won't progress but also because early fusion doesn't often stop progression. Also crankshaft is an issue.

      Fusing less vertebra doesn't seem like as much an issue in T curves as in L curves where you really want to limit the number of vertebrae.

      (edited for clarity)
      Last edited by Pooka1; 07-04-2010, 04:30 PM.
      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."

      Comment


      • #18
        Originally posted by Pooka1 View Post
        That's a good one for mortality. I wonder what he deal is w.r.t. morbidity. That is, maybe there would be less mincing around with adult cases if it was known that even moderate cases at relatively young ages would all be destined for degenerative scoliosis on top of idiopathic absent fusion surgery. So maybe a case can be made to do fusion earlier on smaller curves if it is known that most/all of these people will need it later for degeneration when they are older and the surgery is dicier.
        I totally agree. It would be so helpful to know what happens with each group (scoliosis v. straight) in 50-70 years. We do, however, see a lot of people with degenerative scoliosis who don't require surgery, or who choose not to have surgery. So, I don't think fusing everyone with scoliosis would ever be appropriate.
        Originally posted by Pooka1 View Post
        And on this general subject of when to fuse due to morbidity if not mortality, I wish there was some way to determine if earlier fusion on less vertebrae will avoid later fusion on more vertebrae. I am haunted by the thought that maybe my kids could have had 4-6 vertebrae around the apex fused instead of 10 vertebrae each. Has anyone ever tried to study this? Maybe they have and maybe the answer is known. Maybe the reason they don't fuse smaller curves is not just the likelihood they won't progress but also because early fusion doesn't often stop progression. Also crankshaft is an issue. It doesn't seem like as much an issue in T curves as in L curves where you really want to limit the number of vertebrae.
        There have been studies on this, although I couldn't easily find them. Sine it has been studied, and has not been adopted by the masses, I'm guessing that it wasn't all that successful in the long term. What immediately came to mind is the Robert Gaines bone-on-bone technique (as mentioned in Dave Wolpert's book).

        --Linda
        Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
        ---------------------------------------------------------------------------------------------------------------------------------------------------
        Surgery 2/10/93 A/P fusion T4-L3
        Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

        Comment


        • #19
          hi Linda
          thanks for the reply concerning early scoli..and all the information you gave us in this thread!

          i'd be willing to bet that there are lots of folks out there who had undiagnosed scoli when teens and went on to develop degeneration later on, as you said...though i didnt notice the skirt/dress thing til i was in my 30's (mostly wore jeans as a teenager)...and it wasn't til my 40's that i noticed my pants needed hemming differently for each leg!

          also, when i went to school, there was NO screening for scoli...that easy test when kids bend over and the school nurse can spot problems...i realize i am dating myself... but that is how it used to be...

          i was also not diagnosed until age 31, when my back bothered me...i remember telling the doctor that it felt like a gorilla was on my back...though nothing close to as bad as it bothers me now!!!

          jess
          Last edited by jrnyc; 07-04-2010, 04:52 PM.

          Comment


          • #20
            Originally posted by jrnyc View Post
            hi Linda
            thanks for the reply concerning early scoli..and all the information you gave us in this thread!

            i'd be willing to bet that there are lots of folks out there who had undiagnosed scoli when teens and went on to develop degeneration later on, as you said...though i didnt notice the skirt/dress thing til i was in my 30's (mostly wore jeans as a teenager)...and it wasn't til my 40's that i noticed my pants needed hemming differently for each leg!

            also, when i went to school, there was NO screening for scoli...that easy test when kids bend over and the school nurse can spot problems...i realize i am dating myself... but that is how it used to be...

            i was also not diagnosed until age 31, when my back bothered me...i remember telling the doctor that it felt like a gorilla was on my back...though nothing close to as bad as it bothers me now!!!

            jess
            I also did not have school screening.
            Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
            ---------------------------------------------------------------------------------------------------------------------------------------------------
            Surgery 2/10/93 A/P fusion T4-L3
            Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

            Comment


            • #21
              Originally posted by Pooka1 View Post
              That's a good one for mortality. I wonder what the deal is w.r.t. morbidity. That is, maybe there would be less mincing around with adult cases if it was known that even moderate cases at relatively young ages would all be destined for degenerative scoliosis on top of idiopathic absent fusion surgery. So maybe a case can be made to do fusion earlier on smaller curves if it is known that most/all of these people will need it later for degeneration when they are older and the surgery is dicier.

              And on this general subject of when to fuse due to morbidity if not mortality, I wish there was some way to determine if earlier fusion on less vertebrae will avoid later fusion on more vertebrae. I am haunted by the thought that maybe my kids could have had 4-6 vertebrae around the apex fused instead of 10 vertebrae each. Has anyone ever tried to study this? Maybe they have and maybe the answer is known. Maybe the reason they don't fuse smaller curves is not just the likelihood they won't progress but also because early fusion doesn't often stop progression. Also crankshaft is an issue.


              (edited for clarity)
              These are some very good points. I have often wondered if they would have done my fusion at 39* as a teen when my lower curve was in the teens if the lower curve would have progressed anyway. It would have only been a few vertebrae back then. Now I'm looking at maybe 12 or so. Also, I never understood the mentality of wait until you are 50 or 60 degrees when the curves are progressing and painful. It seems like asking for other health problems to develop which would inevitably lead to complications, especially in those of us that are middle aged or older. It is very frustrating.
              Be happy!
              We don't know what tomorrow brings,
              but we are alive today!

              Comment


              • #22
                Originally posted by rohrer01 View Post
                These are some very good points. I have often wondered if they would have done my fusion at 39* as a teen when my lower curve was in the teens if the lower curve would have progressed anyway. It would have only been a few vertebrae back then. Now I'm looking at maybe 12 or so. Also, I never understood the mentality of wait until you are 50 or 60 degrees when the curves are progressing and painful. It seems like asking for other health problems to develop which would inevitably lead to complications, especially in those of us that are middle aged or older. It is very frustrating.
                I think it is a balancing act.

                They have to balance earlier surgical issues on the one hand:

                1. inherent surgical risk
                2. failure of fusion to stop progression
                3. crankshaft (young kids)

                with issues associated with not doing surgery:

                1. risk of progression
                2. pain which may not be resolvable with fusion
                3. bone density which may make fusion problematic
                4. longer recovery time
                5. degenerative scoliosis on top of idiopathic scoliosis.

                I think as surgical risk comes down with real-time nerve signal monitoring and such, and more data is collected about maybe the inevitability of earlier and worse degenerative changes due to an idiopathic curve over time, that earlier fusion may occur.

                That one testimonial about that doctor clearing his calendar to fusion a TL curve in the 40s in the hope of sparing some lumbar vertebrae might be indicative of where the thinking might be heading. I wonder if my kids could have been fused when they were diagnosed like that. Until someone ponies up evidence that a conservative modality avoids surgery, this will remain a live question.

                It might be the case than many cases of scoliosis require surgery if not when the patient is younger then when they are older. The surgical rates for each curve magnitude we hear about are due to progression I think. When you count in surgical rates for degenerative changers, I wonder just how much of the scoliosis population is included.
                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."

                Comment


                • #23
                  I had no scoli screening at school in Ireland either. I only found out about my scoli when I was 32.
                  Lynette - 44 years old.

                  Pre-surgery thoracic 55 degrees
                  Pre-surgery lumbar 85 degrees

                  Post-surgery thoracic 19 degrees
                  Post-surgery lumbar 27 degrees

                  Surgery April 1st 2010.

                  Posterior spinal fusion from T9 to sacrum.
                  Dr. Cronen at University Community Hospital - Tampa, FL.

                  Comment


                  • #24
                    Okay idiopathic and degenerative are clearly two different things...

                    http://drlloydhey.blogspot.com/2010/...oliosis-w.html
                    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."

                    Comment


                    • #25
                      Originally posted by Pooka1 View Post
                      Okay idiopathic and degenerative are clearly two different things...

                      http://drlloydhey.blogspot.com/2010/...oliosis-w.html
                      It's possible that she knew that she had scoliosis when she was younger. We see a lot of older patients with scoliosis who don't know if they had scoliosis when they were younger, and as far as I can tell, it's not always easy to know which it is.
                      Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                      ---------------------------------------------------------------------------------------------------------------------------------------------------
                      Surgery 2/10/93 A/P fusion T4-L3
                      Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                      Comment


                      • #26
                        "Conservative" in scoliosis surgery. Defined, SVP...

                        Here's a basic question I've been grappling with, reminded of by the discussion here. Somehow, it calls to mind my struggle to figure out what is politically "Left" versus "Right" in Communist or former Communist countries. (Well, it WAS my original college major!)
                        What is the meaning of "CONSERVATIVE" in scoliosis surgery (other than avoiding surgery altogether)?

                        Two of my consulting surgeons so far want to start my fusion at T10 (to the sacrum - with pelvic fixation) and two want to start at T4 with the same endpoint.

                        Clearly, the ones who advocate starting lower want to avoid, if possible, more loss of mobility and greater surgical time, the latter leading to a a more difficult recovery and a greater likelihood of complications. I guess all are figuring roughly that difficulty and risk are increased linearly (though not exponentially) with the number of segments fused.

                        Likewise, the ones who want to fuse from a higher level, believe they are sparing me what they regard as the certainty of more surgery later (to extend the fusion).

                        Interestingly, though, both these "T4" surgeons spontaneously warned me to expect more surgery down the road - type non explicit. Got the impression from one that it was just the nature of the Beast, the Beast being such complex surgery.

                        Maybe, maybe not, the warning was a function of my demographic.

                        OR was it a function of their OWN DEMOGRAPHIC? The two "T10" surgeons are fortiesh, and seem to know each other well. Likewise, both "T4" are contemporaries, about my age - i.e., early to mid 60s.

                        Is it more "conservative" to start with a longer fusion to avoid the greater risk of an extended fusion - maybe also "lordosis failure" - i.e., flatback?

                        Or is it more "conservative" to fuse less and subject me to less surgery - NOW? Again, in their minds, they're sparing me the consequent risks. Maybe the younger surgeons think I might die of other causes before needing the fusion extension (I think in their hearts, they expect it to be needed if I live long enough).
                        Last edited by Back-out; 07-05-2010, 07:43 PM.
                        Not all diagnosed (still having tests and consults) but so far:
                        Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
                        main curve L Cobb 60, compensating T curve ~ 30
                        Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

                        Comment


                        • #27
                          Making the question more complicated

                          I've simplified, above. There seems to be a carry-over of planning whereby the pair who want to start the fusion higher, also are planning to do more anterior strengthening to reinforce the re-created lordosis. This too corresponds to more surgical time/risk etc., in return for more assuredly avoiding later failure of the correction.

                          FWIW I suppose the degree of correction expected/sought ought by rights to figure in with the nomenclature question. Answer: I was left with the impression that all four expected correction to be "about half" - at least, that's what they SAID. I felt this was a politic answer, though - designed to lower my expectations and avoid commitment. Then they could pleasantly surprise me, if it turned out to be possible. I don't know what they REALLY thought or intend to shoot for, given the same presentation once I'm open on the table.

                          I'm still waiting for the results of my bending X-rays to get a more informed reply. I'm sure all four will welcome the imaging to set their surgical bar, whether or not they tell me what they really hope for!

                          I'm very curious about what this grouping means in terms of training, their personal expectations of themselves, what warnings or shared experience they are responding to apparently in a generational fashion. Basically, I see the surgeons themselves as two cohorts and want to understand them.

                          I sort of see Lenke/Bridwell as representing a similar breakdown and in that pairing, I definitely regard Dr. Lenke (trained by Bridwell) as reflecting greater self-confidence in his more radical corrections. But here I ask a broader question. Not merely, which is the more "conservative" of those two but is this term really defined by the intended fusion length? If the surgeon is choosing that length according to his own well-founded self confidence about what he can achieve, is he less conservative or is he simply realistic given his skills?
                          Last edited by Back-out; 07-05-2010, 07:40 PM.
                          Not all diagnosed (still having tests and consults) but so far:
                          Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
                          main curve L Cobb 60, compensating T curve ~ 30
                          Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

                          Comment


                          • #28
                            I think "conservative" = less surgery now and a willingness to possibly forego some correction to obtain an acceptable result with a shorter and less traumatic surgery (i.e. Dr. Gupta who wants to fuse me T8-L5 all posterior).

                            The opposite, which I'm labeling "aggressive" = more surgery now with the aim of a better correction and possibly avoiding additional future surgeries (i.e. Dr. Dietz who wants to do a 12-hour A/P fusion on me from T4-L4).

                            So, in your case, Amanda, I think the T-10 group would be the ones considered more "conservative."

                            Evelyn
                            age 48
                            80* thoracolumbar; 40* thoracic
                            Reduced to ~16* thoracolumbar; ~0* thoracic
                            Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
                            Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
                            Not "confused" anymore, but don't know how to change my username.

                            Comment


                            • #29
                              Originally posted by Confusedmom View Post
                              I think "conservative" = less surgery now and a willingness to possibly forego some correction to obtain an acceptable result with a shorter and less traumatic surgery (i.e. Dr. Gupta who wants to fuse me T8-L5 all posterior).

                              The opposite, which I'm labeling "aggressive" = more surgery now with the aim of a better correction and possibly avoiding additional future surgeries (i.e. Dr. Dietz who wants to do a 12-hour A/P fusion on me from T4-L4).

                              So, in your case, Amanda, I think the T-10 group would be the ones considered more "conservative."

                              Evelyn
                              Thanks, Evelyn. I'd kind of answered my own question once I realized anew that NO surgery is the most conservative of all (in Pooka context). I got both "surgical cohorts" mislabeled above (since corrected) but it doesn't matter.

                              Still wonder in a general way how to label the Lenke/Bridwell duo in this conservative-aggressive continuum, though I suppose the definitions are pretty cut and dried in a professional sense; i.e. here, anyhow - more surgery = more aggressive. That's so even if taken over time. it might be considered more conservative to avoid a second surgery.

                              Again, I regard the "T10s" as actually staging the surgery over the long haul. It's just that they're delaying the second stage figuring it may never be reached, and meanwhile the patient is more comfortable.

                              This is ala Baron Lonner, who in a way represents the mid-point in age and rationale. Funny, that by now I can pretty much predict what he will recommend for me based on what we've heard of him on this forum, c/o Jess especially. Also her curves are much the same as mine, as is our demographic and DDD.

                              One " T4" particularly pointed out that even with a longer fusion, there are "no guarantees". Thanks to Linda Racine's links on the subject (PJK and kyphosis) I knew just what he was referring to.
                              Last edited by Back-out; 07-05-2010, 10:04 PM.
                              Not all diagnosed (still having tests and consults) but so far:
                              Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
                              main curve L Cobb 60, compensating T curve ~ 30
                              Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

                              Comment


                              • #30
                                no one's back is identical to another's...so i would not predict what ANY surgeon will advise one patient based on what that surgeon advises another patient...no patient's overall health is the same as another's...nor their weight, nutritional profile, number of discs degenerated, degree of rotation, amount of stenosis, degree of arthritis, or anything else...nor is a prediction of how the patient will tolerate the surgery, the liklihood that patient will need revision in the future, their lifestyles, or anything else!

                                jess

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