Announcement

Collapse
No announcement yet.

Surgery is no cure.

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #46
    My 2 cents/experience

    Progression of 1-3 degrees a year: Do the math.

    A significantly curved spine brings all the internal organs along with it.

    I never even think of cosmesis being an indication for surgery; if it looks that bad it will only get worse.

    60deg curves can result in lung impairment-I cited several studies in an earlier post. This happened to me and I actually lost lung tissue. Lost lung tissue does not come back.

    Regarding pedicle screws in older persons-like me(67). I am 6 years post revision with Isola rods, pedicle screws, laminar wires, and cages. Guess what! I am pain free, still able to work and have a normal life. Without the surgery I would be disabled and a burden on my dear husband and family. I give significant help to my 92 year old mom--who is bent and twisted. Her curve was barely noticeable when I was a child--and it still progressed!!!

    Alternative methods helped me reduce pain but did not stop the progression and loss of lung capacity. At age 52 my major curve was 62 degrees by age 59 it was 80 deg.

    If a curve is significant at skeletal maturity wishing, hoping and arguing will not stop it. Surgery has definitely shown to reduce curves permanently most of the time. Before the advent of surgery traction was tried along with exercises and braces. That was all they had. I had a patient a few months ago whose scoliosis was so bad she needed a ventilator. She was 74. She has no other medical problems and her scoliosis was going to kill her.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

    Comment


    • #47
      Originally posted by Karen Ocker View Post
      Progression of 1-3 degrees a year: Do the math.

      A significantly curved spine brings all the internal organs along with it.

      I never even think of cosmesis being an indication for surgery; if it looks that bad it will only get worse.

      60deg curves can result in lung impairment-I cited several studies in an earlier post. This happened to me and I actually lost lung tissue. Lost lung tissue does not come back.

      Regarding pedicle screws in older persons-like me(67). I am 6 years post revision with Isola rods, pedicle screws, laminar wires, and cages. Guess what! I am pain free, still able to work and have a normal life. Without the surgery I would be disabled and a burden on my dear husband and family. I give significant help to my 92 year old mom--who is bent and twisted. Her curve was barely noticeable when I was a child--and it still progressed!!!

      Alternative methods helped me reduce pain but did not stop the progression and loss of lung capacity. At age 52 my major curve was 62 degrees by age 59 it was 80 deg.

      If a curve is significant at skeletal maturity wishing, hoping and arguing will not stop it. Surgery has definitely shown to reduce curves permanently most of the time. Before the advent of surgery traction was tried along with exercises and braces. That was all they had. I had a patient a few months ago whose scoliosis was so bad she needed a ventilator. She was 74. She has no other medical problems and her scoliosis was going to kill her.
      What I wouldn't give to hear a comment from Weiss on your post.
      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


      • #48
        One more observation

        I travel to Germany almost every year on vacation. I always see, on every visit, native, adult Germans with severe scoliosis. If Schroth has been used there for 40 years I wonder why these persons haven't been helped since they have universal health insurance.

        I have read many abstracts written by Weiss. Some of his patients still need surgery. Then the issue arises if his "successes" had the gene for non-progressive scoliosis. Is there a long term follow-up? His protocol uses a brace(nothing new there) and intensive PT.

        I am 6 years in a follow-up study by Dr. Boachie. Some long term studies might be difficult to pull off. Successes don't always bother to go back; they go on with their lives, don't go back because of the cost of travel, lack of insurance or move away.
        Last edited by Karen Ocker; 06-13-2009, 08:13 AM.
        Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
        Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

        Comment


        • #49
          Originally posted by Karen Ocker View Post
          Regarding pedicle screws in older persons-like me(67). I am 6 years post revision with Isola rods, pedicle screws, laminar wires, and cages. Guess what! I am pain free, still able to work and have a normal life.
          Hi Karen,

          Folks often bring up the potential problems down the line from the nitanol (sp?) staples used in VBS. While the staples themselves are relatively new, I have oftened thought about all of the other different types of hardware used in spinal surgery and about all the people walking around with rods, screws, hooks, wires, etc. On the whole, it seems to me that (while I'm sure there are some folks who experience problems) most folks don't have major problems from the hardware.

          Hearing that you have all this hardware in you and are doing so well at age 67 is great to hear - and I wish you continued health and happiness!!

          Regards,
          Last edited by mariaf; 06-13-2009, 01:06 PM. Reason: spelling
          mariaf305@yahoo.com
          Mom to David, age 17, braced June 2000 to March 2004
          Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

          https://www.facebook.com/groups/ScoliosisTethering/

          http://pediatricspinefoundation.org/

          Comment


          • #50
            Maria...

            Of all the research papers I've read on scoliosis, and that's pretty numerous, the one linked below has been my absolute favorite. The moral of the story is that implants in the hands of a hack can be disastrous, but perfectly safe in the hands of a master.

            Interestingly, it also addresses the issue of "control" groups in terms of scoliosis surgery.

            http://www.scoliosislinks.com/RobertWinterArticle.htm

            Regards,
            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


            • #51
              Originally posted by mariaf View Post
              Hi Karen,

              Folks often bring up the potential problems down the line from the nitanol (sp?) staples used in VBS. While the staples themselves are relatively new, I have often thought about all of the other different types of hardware used in spinal surgery and about all the people walking around with rods, screws, hooks, wires, etc. On the whole, it seems to me that (while I'm sure there are some folks who experience problems) most folks don't have major problems from the hardware.

              Hearing that you have all this hardware in you and are doing so well at age 67 is great to hear - and I wish you continued health and happiness!!

              Regards,
              Not that I have researched to death but I haven't heard about problems with the new staples. Old ones, yes. The new ones have a very good track record, no? Like almost perfect I thought.

              In re fusion and new generation of surgery, I think the main issue with the previous fusion instrumentation was flatback syndrome. Not everyone got flatback but I think everyone who did had the old instrumentation. I suspect the new instrumentation was specifically designed to address that problem; based on the one study Linda posted recently, the new instrumentation brings sagittal balance to correct. If that pans out, based on that, I think some new problem is going to have to crop up in the out years that hasn't been seen for the new fusion instrumentation to fail. Not impossible but maybe unlikely. I suspect that is why our surgeon can claim my fused daughter is back in the population for the rest of her life but I don't know that.
              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


              • #52
                Originally posted by Pooka1 View Post
                Not that I have researched to death but I haven't heard about problems with the new staples. Old ones, yes. The new ones have a very good track record, no? Like almost perfect I thought.
                Sharon,

                I haven't heard about any problems with any of the staples used in the past 7- 8 years (that's not to say there aren't any - but I probably have talked to more parents of VBS patients than just about anyone - LOL!)

                I think anyone who brings up the subject is referring to "potential" problems down the road, NOT because there is any reason to think that there will necessarily BE any problems, but because nobody is 10, 20 or 30 years post-op.

                So, just as there COULD be problems - it could also turn out that there are none. I hope that makes sense - here's an excerpt from the article Linda posted which I hope explains it better:

                "Dr. Harrington did not just begin inserting metal rods into patients. He studied the anatomy carefully; he worked for 10 years with engineers from Baylor University, and did not release the rods for general use until he had spent all those years perfecting them. His patients who were treated early were well informed that this was a new idea. They were proud to be part of history."

                Linda,

                That was a great - and VERY interesting article - thanks!!! It's funny, but when I read the quote above, I realized I was once told the same thing about VBS by someone - he said that the doctors didn't just one day decide to start inserting staples into patients, but that they had worked for years on it, etc. Also, as stated above, those who have inquired about VBS were told going in that it was relatively new and there were no long-term (i.e., 10-20 years or more) results.

                Bottom line - just because something is new doesn't mean it won't work. Weren't ALL procedures used today "new" at one time?
                Last edited by mariaf; 06-13-2009, 09:50 PM.
                mariaf305@yahoo.com
                Mom to David, age 17, braced June 2000 to March 2004
                Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                https://www.facebook.com/groups/ScoliosisTethering/

                http://pediatricspinefoundation.org/

                Comment


                • #53
                  Originally posted by LindaRacine View Post
                  CD...

                  I know you love the underdog, but occasionally you go around the bend.

                  If RCTs are the only valid studies, then technically there is no proof that scoliosis surgery is effective. However, there are long-term studies galore, which is a lot more than one can say about any of the alternative studies.

                  And, so when your kid's curve reaches say 70-80 degrees, I assume you'll allow them to be put in a control group and not have surgery. Right? ;-)

                  --Linda


                  Sometime’s the underdog deserves a good look. Why I didn’t place that $100 bet on Mine That Bird to win the Derby I’ll never know.

                  This is the thing about the RCT, you’re absolutely right. I wouldn’t put her in a control group, we would opt for surgery (long before 70-80 degrees if possible). But, Neither would I put her in a control group for the SRS bracing study.

                  The SRS doctors challenged the method of treatment SOSORT believes in. They did this (in part) by way of a metanalysis showing that a REVIEW of the literature did not rise to the level of strong evidence that bracing reduces the need for surgery. There was some shenanagins involved (designing the study such that published research involving BOTH bracing and exercise was NOT included).

                  Then SOSORT says, “two can play by this game”. They do a metanalysis that shows there is a lack of evidence surgery improves things in the long term. Their shenanagins involved designing their study (in the same way SRS did “tit for tat”) such that certain papers where excluded (using only those old studies that provided LONG term evidence).

                  You cant be outraged by the Weiss quote in this context without being outraged by the Dolan quote as well. Personally, I’m not outraged by either (OK, maybe I HAD been outraged in the past about Dolan and confused about Weiss). When viewed in the context of the scientific debate we are able to understand what is transpiring.

                  You also have to remember that, at the time this paper was written, the bracing RCT criteria included curves 25-40 degrees. The likelihood of progression of these curves in premenarchal girls is very high. SOSORT believes in earlier intervention (before 25-40 degrees), they likely viewed this RCT as being “loaded” to show a high incidence of bracing failure (they have since modified it to include curves above 20 degrees, rather than 25).

                  So, all the comments above and elsewhere in this forum about how ridiculous it is to suggest there is no reason to have surgery are valid. But the SOSORT views about bracing and excericse may also be valid.

                  Again, just my 2 cents and I could be wrong.

                  Comment


                  • #54
                    Originally posted by concerned dad View Post
                    The SRS doctors challenged the method of treatment SOSORT believes in. They did this (in part) by way of a metanalysis showing that a REVIEW of the literature did not rise to the level of strong evidence that bracing reduces the need for surgery. There was some shenanagins involved (designing the study such that published research involving BOTH bracing and exercise was NOT included).
                    I would not call those shenanigans at all. I think it would have been okay in effect to include brace+exercise studies but then you would have pouting and bellyaching from the PT crowd that the SRS are effectively "assuming" PT doesn't work in including those studies. Now I think we have decades of information to think PT has yet to show permanent reduction of curves so they could have included those studies in my opinion. But since we can't prove PT doesn't work at this time, they had to exclude them.

                    Then SOSORT says, “two can play by this game”. They do a metanalysis that shows there is a lack of evidence surgery improves things in the long term. Their shenanagins involved designing their study (in the same way SRS did “tit for tat”) such that certain papers where excluded (using only those old studies that provided LONG term evidence).
                    That's not shenanigans... that intellectually dishonest. Nobody gives a hoot about outcome of instrumentation that hasn't been in use for years. Lay folks reading these papers are sometimes/often not clear that they are irrelevant. We have seen examples of this confusion.

                    You cant be outraged by the Weiss quote in this context without being outraged by the Dolan quote as well. Personally, I’m not outraged by either (OK, maybe I HAD been outraged in the past about Dolan and confused about Weiss). When viewed in the context of the scientific debate we are able to understand what is transpiring.
                    The context is mainstream thought identifies at least four indicators for spinal fusion for scoliosis and Weiss only recognizes one of these. Yes/no?

                    So, all the comments above and elsewhere in this forum about how ridiculous it is to suggest there is no reason to have surgery are valid. But the SOSORT views about bracing and excericse may also be valid.

                    Again, just my 2 cents and I could be wrong.
                    Folks who demand evidence for the validity of spinal fusion need to first pony up evidence of the validity of setting broken arm bones. Otherwise, they are not being consistent.
                    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


                    • #55
                      What, no comment on Mine That Bird?


                      Lay folks reading these papers are sometimes/often not clear that they are irrelevant. We have seen examples of this confusion
                      Dont forget, these papers are not meant for lay folks like you and I.

                      I guess we have a difference of opinion on the whole topic. That's OK.
                      Gimme a few weeks and I'll probably change my mind anyway.
                      But for now, I like my "take" on the issue.

                      Comment


                      • #56
                        Originally posted by concerned dad View Post
                        What, no comment on Mine That Bird?
                        I don't believe 3-year olds should be raced and I certainly don't believe 2-year olds should be in under saddle training.

                        Don't forget, these papers are not meant for lay folks like you and I.

                        I guess we have a difference of opinion on the whole topic. That's OK.
                        Gimme a few weeks and I'll probably change my mind anyway.
                        But for now, I like my "take" on the issue.
                        Alrighty then!

                        BTW, I haven't yet had time to wade through you email. I will.
                        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


                        • #57
                          Bridwell KH. Surgical treatment of idiopathic adolescent scoliosis. Spine.
                          1999 Dec 15;24(24):2607-16. Review.

                          ---

                          Does anyone know if this article is available on-line? I want to make sure that blurb wasn't inadvertently quote-mined. Not claiming Fix did that.
                          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


                          • #58
                            Originally posted by Pooka1 View Post
                            Bridwell KH. Surgical treatment of idiopathic adolescent scoliosis. Spine.
                            1999 Dec 15;24(24):2607-16. Review.

                            ---

                            Does anyone know if this article is available on-line? I want to make sure that blurb wasn't inadvertently quote-mined. Not claiming Fix did that.
                            I looked on the day Fix posted it, but couldn't fine the full text online.
                            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


                            • #59
                              Originally posted by LindaRacine View Post
                              I looked on the day Fix posted it, but couldn't fine the full text online.
                              Darn. I couldn't find it online either. That's why I asked.
                              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


                              • #60
                                Originally posted by FixScoliosis View Post
                                “It is very difficult to know precisely what the natural history of untreated surgical idiopathic scoliosis is, because most patients have surgical treatment of their curves when the Cobb measurement exceeds 50°. The only way of definitively proving that the natural history of surgical treatment of idiopathic scoliosis is better than untreated scoliosis would be to undertake a study involving a prospective, randomized group of patients with curves more than 50°, treated surgically with modern-day instrumentation and then compare the results with those of a similar group of untreated patients matched for age, deformity, and other parameters. Those two groups of patients would then have to be followed up in 10-year intervals to determine their relative function, pain and cosmetic appearance. No such study exists. If it were possible, it would take between 20 and 40 years to obtain a definitive answer.”
                                This is a verbatim quotation from the article. I don't see how anyone can ague about Bridwell's statements so far. He is saying what ya'll have been saying for weeks. There is NO study out there that says that any intervention (surgery/bracing/exercise) is better than doing nothing because it would take 20-40 years to complete such a study.


                                Originally posted by FixScoliosis View Post
                                He also stated:
                                "Many surgeons feel that 50° is the surgical tidemark for treating idiopathic scoliosis … This “magic number” comes in part as an extrapolation from … studies of natural history and in part that most 50° curves are very visible cosmetically.”
                                Yes. Here is the part left out of the quotation.

                                "This “magic number” comes in part as an extrapolation from the Edgar and Mehta and Weinstein studies of natural history and in part that most 50° curves are very visible cosmetically. However, there are other factors to consider."

                                Table 3. Goals of Surgery for Thoracic Curves
                                Deformity correction; preserve sagittal balance
                                Preservation or improvement of pulmonary function
                                Positive influence on the lumbar spine
                                Minimal morbidity/pain for the patient
                                Maximize patient return to full function



                                Another quote:

                                "Idiopathic adolescent scoliosis has an extremely varied spectrum of clinical features of severity, curve pattern, and progression. Prospective randomized studies are most appropriate with homogeneous disorders, which idiopathic adolescent scoliosis is not. This makes comparison of surgically treated versus untreated idiopathic scoliosis very complex. There are studies in which investigators have prospectively analyzed the natural history of idiopathic scoliosis in a longitudinal manner. In this author’s opinion, such studies would be more helpful if they analyzed only curves considered surgical or at risk for progression (i.e., only curves more than 50° by Cobb measurement). Granted, using that tidemark is debatable, because a Cobb measurement is a one-dimensional analysis of a three-dimensional deformity."

                                Bridwell KH. Surgical treatment of idiopathic adolescent scoliosis. Spine.
                                1999 Dec 15;24(24):2607-16. Review.

                                Edgar M, Mehta M. Long-term follow-up of fused and unfused idiopathic
                                scoliosis. J Bone Joint Surg 1988;70B:712–6.

                                Weinstein SL. Idiopathic scoliosis. Natural history. Spine 1986;11:780–3.

                                Does that help?

                                I want to note that this paper is ten years old. None of these patients had pedicle screws.

                                Comment

                                Working...
                                X