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  • Originally posted by Celia Vogel
    The moderators at the vertebral stapling site should also add to the above sales pitch:

    operators are standing by to take your call and if you call Janet right now to make an appointment with dr. Betz a lovely fruit basket with a decorative floral arrangement will be sent to you as our thanks!

    How kind, and relevant to anything regarding treatment options for our children. There you go, Celia supporters...more ugly, sarcastic, sour, unrelated drivvel in place of adult, reasonable, factual discussion, when debated. Beside the above quote missing any scrap of intelligence or substance, Im a tad surprised at the lack of emoticons used to fill in dead space as usual.

    Your afterthought was correct though, Celia. The original discussion was on spinecor. No one jumped in and brought up VBS "quotes" other than yourself, and the info was yet another mash up of words, again misleading readers.

    There are no "stapling mums"....."casting mums"....or "spinecor mums"...we are all however, "children with scoliosis mums" and must simply offer one another relevant, researched information and advice from personal experience. Statements like the above quote is EXACTLY what sparks angry retorts. What goes ON in the brain of one who attempts to make a joke out of the mention of another support forum?.. which I indeed maintain--includes none of this nonesense. For shame.
    Mom of Miles (2 1/2 )
    Diagnosed at 14 mo.
    start curve 30*/Prog. to 37*/26*CURRENT
    TLSO braced. VBS tentative for 2008
    Patient of Dr. Betz, PA.
    mom to Allie (12) and Ben (10)

    Comment


    • Celia,

      What on earth is wrong with you? NOBODY else on this forum acts so childish and irrational.

      You know what they say about comedians who have to use vulgar language to get laughs - that they are not talented enough to entertain an audience with their wit.

      That seems to clearly be the case here - you can't make your case against stapling logically and rationally so you resort to stuff like this which makes you sound like a total nut case.
      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


      • I think "Mum of Miles" (hopefully our children will never read these posts, now or in the future, as it gives a very bad impression of "adult" behaviour), i think that once the tone is set and the attack is launched (as happened in post 2460) and other "mothers with great knowledge and passion about stapling" join, things go pear-shaped and downhills very easily, and it becomes very difficult not to retort to very serious and un-warranted personal attacks with a degree of sarcasm, however unwise this might be.

        dad of l
        Last edited by gerbo; 03-24-2012, 04:35 AM.

        Comment


        • OK, getting back to what sparked all of this (not that I want to continue this "debate" but the following is something I think parents should read because it SPEAKS VOLUMES).

          I just copied this from the VBS support site. Laura is the mom of that 11-year old male patient of Dr. D'Andrea that I spoke of:


          "Maria,

          You are absolutely correct! We saw Dr. D'Andrea and Brian's curve had gone from 25 degrees to 23, she said that it seemed that the brace was correcting and that if it was her child she would NOT perform surgery. She even explained to Brian that it was not a minor surgery and that if they could aviod it and keep the correction by bracing they would. She came to an agreement with him to only wear it at night. We went back 1 1/2 years later when he increased to 28 degree. We actually wanted the surgery and were really upset she felt so strongly about not doing it.
          I am not the only one with a good memory!

          Laura
          Mom to Brian Age 12
          Braced 2+ years
          VBS performed on Sept. 24,2007 by Dr. Asghar Shriner's Philly
          curve 30*/15* pre-op
          post-op 6*/not measurable"


          Does that sound like Dr. D'Andrea would EVER staple a 15 degree curve?

          I'm talking about in reality - NOT when the question is posed hypothetically and in futuristic terms where she would absolutely know FOR SURE (97%) that a curve would progress. As Stephanie posted, under those conditions it WOULD make sense, but that is not what she was "misquoted" as saying.

          By the way, please note Brian's FANTASTIC results. (sorry if that bothers you Celia, but we are all very happy for the boy).
          Last edited by mariaf; 11-30-2007, 10:28 AM.
          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


          • Originally posted by WNCmom
            Gerbo:

            So given this definition, intense physical therapy methods like Schroth relieve the force of gravity from the spine by/during the actual exercise, and that's one way the method works? Or does it rebalance the gravity load (during the exercise or as a result of strengthened or retrained muscles)? I've heard gravity spoken of several times in discussions of Schroth. One would guess that a spinecor brace is attempting to rebalance the load and retrain muscles. Just trying to wrap my brain around what all this means.....

            Mary Ellen
            first of all, although Schroth has many followers, the actual evidence that it "works" seems very limited (hasten to add, would seriously consider trying as not much better available), as evidence for most methods is ever so limited (like osteopathy, SI and even re our beloved Spinecor)

            What I gather is that there are so many factors to take into account, but gravity on an unnatural upright spine (spine isn't designed to be upright, apparantly there is no scoliosis in mammals walking on 4 legs), really makes it all worse and isn't our friend.

            Whatever causes the initial curve, I think it is commonly agreed that in many cases a vicious cycle sets into motion, where many factors contribute to an near inevitable worsening, this include assymetrical bone growth, assymetrical muscle action/ tension, changing movement patterns, and ofcourse progressive changes in various ligaments, and all of this exacerbated by the force of gravity pulling on the spine.

            This then would mean that what you do in the way of treatment needs to be aimed at one or more of these factors to have a chance to be succesful, i.e. keep the spine as straight as possible (brACING/ POSTURE) to keep the assymmetrical pressure off the growth plates, and stop ligaments etc contracting assymmetrically, exercises to prevent or deal with abnormal/ assymmetrical muscle action and exercises to improve posture, all with the aim to try to keep the spine as straight as possible for all these factors to have as little influence as possible. Spinecor is meaned to do various things, i.e counterbending and twisting the spine in such a way that it is straighter, but also it is meaned to encourage a more natural movement pattern and help in that way.

            I am sure structural will either correct me or give further detail, I think we agree broadly though

            Comment


            • Originally posted by gerbo
              I think "Mum of Miles" (hopefully our children will never read these posts, now or in the future, as it gives a very bad impression of "adult" behaviour), i think that once the tone is set and the attack is launched (as happened in post 2460) and other "mothers with great knowledge and passion about stapling" join, things go pear-shaped and downhills very easily, and it becomes very difficult not to retort to very serious and un-warranted personal attacks with a degree of sarcasm, however unwise this might be.

              dad of lisanna
              Agreed. But, the original commentaries make the rest of the posts defeating to what this is all about. To debate the validity of a statement, in honor of providing accurate info ( we DO all agree that we want the info on the forum to BE accurate, correct? Yes.) is one issue.

              To purposely stray from the subject at hand and move into odd speak referencing "sunny days at lakes".... "only seeing the upside of VBS"...and lastly, " selling Shriners for free gifts"...is simply an adult who is not able to control their behaviour, and feels ok with shifting into that cruel downward spiral. Yes, some of the moms get heated, but if you look back it is ALL in reference to the SUBJECT AT HAND...I see no other speak of fairies, unicorns and useless oddities like that from them. Good grief, Celia is an *adult*...surley if she felt so horribly victimized she'd leave the discussion, but no she forges ahead with sly confronation.

              Personally, my child would never see recounts of this, and I've not had experience with such behaviours with friends, family, or my other support group. Agreed, it is shameful, and either way, Miles is 2...and already well above some of the demeanors I see here.

              The bottom line is that we wish that Celia would just stop bashing and misinforming, on some desperate quest to constantly feel "right". I do not see where anyone else has done so. Then, the subject matters could return to what they should be.
              Mom of Miles (2 1/2 )
              Diagnosed at 14 mo.
              start curve 30*/Prog. to 37*/26*CURRENT
              TLSO braced. VBS tentative for 2008
              Patient of Dr. Betz, PA.
              mom to Allie (12) and Ben (10)

              Comment


              • By the way, please note Brian's FANTASTIC results. (sorry if that bothers you Celia, but we are all very happy for the boy).
                i think there is an element here of putting "words in mouth", which doesn't help a rational discussion, and again, making critical remarks (which i would do myself re spinecor) does not equate to being against a method. (i do not think celia has argued against stapling, just has different opinions about its place in the therapeutic arsenal)

                saying that; the mentioned result is fascinating; how is this explained? I can understand that growth inhibition by a staple on one side of a vertebra can have an effect in the long term, but how does one explain such a sudden improvement, what is actually done to the spine duringthe surgery for it to straighten out so much? This cannot be explained by the direct effect of the staple, or can it?

                Comment


                • Gerbo,

                  In watching the SRS presentation, I did see it mentioned that with regard to stapling, the best results occur when good correction is achieved on the operating table. This seems to hold true with regard to the dozens and dozens of parents I've spoken to as well.

                  I am not able to explain it adequately in medical terms, but the spine is gently moved into position and then the staple is inserted. The theory is twofold: (1) to achieve some initial correction right then and there; and (2) to achieve additional possible correction as the child grows and the growth on the one side of the vertebrae is inhibited.

                  One of our VBS members (in fact she's the longest out of surgery - nearly 6 years post-op) said that Dr. Betz told her at first the goal of the VBS, as with bracing, was mainly to hold or maintain the curve. The correction has just been, as we say "gravy".

                  I wish I could explain what happens in the OR in more technical, medical terms. Maybe Amanda, Stephanie or someone else has had it explained to them by Dr. Betz or Dr. Ashgar. I know that Stephanie spoke AT LENGTH to Dr. Ashgar about the procedure recently.
                  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


                  • I found another e-mail from the parent of one of Dr. D'Andrea's patients (actually BOTH of her kids are currently being braced by Dr. D):

                    (I took the first names out and just inserted "my son" and "my daughter" instead to protect privacy).

                    Here's the e-mail:

                    "[My daughter] is 8 years old. Dr. D'Andrea was great. I absolutely loved the way she handled the kids and our questions. She would like us to wait as far as surgery goes on both children ([our son] is 13 with a 27 degree curve up top).

                    What she said made a lot of sense. I have scoli, my mom had scoli and my
                    sister also has scoli. None of us ever needed surgery. Dr. D'Andrea said
                    it is quite possible that our childrens curve may never get to the point of
                    needing surgery either based on our genes. We will however keep bracing
                    both children and watch closely and call Dr. D'Andrea when and if they start
                    approaching 40 degrees. She said they don't like to do the stapling after
                    50 degrees. I feel bad for the kids that they have to wear the brace but in
                    some ways relieved that they don't need surgery right now. [Our daughter] (8) has done really well wearing the brace. [My son] (13) is getting his brace
                    tomorrow. I think he will have a tougher time simply because of his age.
                    I loved Dr. D'Andrea and would recommend her to anyone!"


                    This is NOT meant to stir anything up. I think it just shows the thought process that takes place and ALL THE VARIABLES involved when a doctor decides whether or not to recommend stapling.
                    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


                    • intruiging....... one wonders whether they are doing completely different then they think they are doing, because strictly speaking, putting a staple on one body of a vertebra (and not between 2) should not make any difference in the short term.

                      what is the oldest they tend to take on, either in connection to age or growthspurt??

                      Comment


                      • Again, perhaps, Stepanie or someone else will address your first point. I'd like to hear the answer myself to satisfy my curiousity.

                        With regard to the second question, I have a young son so we obviously didn't discuss Risser, but many parents have said they were told that one has to be either Risser 0 or 1 to be considered.

                        In terms of age, or let's say, amount of growth left for a male which can't be measured by Risser, I would reiterate what I stated earlier that many variables (including family history, flexibility, etc.) are taken into consideration.

                        That being said, the oldest they seem to take on GENERALLY (there could of course be exceptions) is about 12 or 13 years of age. They are looking for a child with "considerable" growth left to do. Given, for example, that boys often don't have their big growth spurt until 15 or 16 years of age, there's probably no reason why a 13 (or even 14) year old boy who has not yet had that growth spurt wouldn't at least be considered or looked at for the procedure.

                        Hope this helps.
                        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


                        • It is all interesting Maria, and so many facets to it. The concept of "lots of growth" is what compells us to address Miles' surgery at such a s young age. I will certainly have more concrete answers on the 17th, as to the status of the newer staples being developed ( size wise). I plan to make this the main focus of this appt, since the curve is holding so well. If they are ready next year, then so are we. I feel that with Miles' pliability and the huge amount of growth left to do, that we should have really positive results.
                          A consultant joins us in each appointment, as they are tracking Miles whole experience due to his young age. I am under the assumption that he will be the youngest patient to date ( maybe not by next year) to have the procedure,as the youngest I know of is four. Rank by age is the very least important to us--but also am looking for any younger patients between now and our tentative date to track as well.
                          I read of so many parents who have had the procedure with fantastic results, saying "I wish we'd have opted for this sooner" and this is what makes me feel good about having this option for Miles at such an early stage, so that he can put it behind him.
                          I received your package today, absolutely wonderful, thanks for the contribution-- I know the entire Shriners staff will be so pleased by what we all have together. I maintain, that through the rough spots...so much GOOD can come of this situation.
                          talk to you soon-
                          Mom of Miles (2 1/2 )
                          Diagnosed at 14 mo.
                          start curve 30*/Prog. to 37*/26*CURRENT
                          TLSO braced. VBS tentative for 2008
                          Patient of Dr. Betz, PA.
                          mom to Allie (12) and Ben (10)

                          Comment


                          • still holding at a "6"

                            hello! Had our appt. in Montreal last week, she's still holding in brace at a "6," seems like she's had a lot of growth also (I'll have to check past records.) And her x-ray looks improved from our last appointment.

                            The weather was beautiful, we ended up spending a couple nites at Mont Tremblanc, all snow covered!
                            p

                            Comment


                            • Gerbo,

                              Since you asked, as Maria said, during the VBS surgery the surgeon, prior to putting the staples in, manipulates the spine into a more "correct" position. Not so much the curve, as the rotation of the spine. (but since these go hand in hand perhaps the curve sees some immediate correction too??) The manipulation of the spine is what takes the majority of the time.

                              After the spine is in a positon that the surgeon is happy with, he places the staples. The procedure is usually done thoroscopically with 4 to 6 small incisions. The staples are placed into each affected vertebra. To be honest, I am not sure if this immediately affects the curve. (Good question and I will ask it on Dec 14th when I see Dr Asghar again for Michela's pre op visit!!) The child is then in the hospital 4-5 days on average. Then they go home with a brace. This is not a scoliosis brace as it does not apply tension. It is a brace they use simply to "remind" the child that they just had surgery and keeps them from doing too much activity. These children return to school generally within 4 weeks, some sooner, some later. The child has a follow up visit with the surgeon 6 weeks later. An x ray is taken and that is when the results of the stapling is first seen!!

                              The surgeons will tell you that the goal of stapling is to prevent progression. Getting correction, however, seems to me very common, and of course delights the parents and surgeons alike!! Their are children who do not get correction. Why this is, I do not know. Most of the children that I follow have indeed had correction

                              As the child grows, the staples hold the curve by altering the performance of growth plates at the site. Many times, this leads to even more correction.

                              After the 6 week post op visit, the child can return to a full activity.

                              Stephanie
                              Mom to Michela ~age 12 ~VBS @ age 9 - 12/19/07 26* to 1*
                              10/8/08 ~ curve is immeasurable!!
                              07/16/09 ~ a few degrees overcorrected... being monitored
                              12/28/09 ~ 14* overcorrected to the right
                              2/23/10 ~ 12* overcorrected
                              3/12/10 ~ Boston Brace at night to prevent further overcorrection. In brace corrects to -8*

                              Comment


                              • Pat:
                                Great news. It is wonderful to read that the brace is working.
                                Mont Tremblant is beautiful isn't it? If you ever want a great vacation experience I'd recommend a visit to Quebec City too.
                                Ruth
                                Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

                                Comment

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