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  • #91
    AND what about all the information that would be deleted?? Isn't that why folks come on here in the first place??

    Hopefully, everyone will now be a bit more sensitive in their posts going forward.
    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


    • #92
      Gerbo,

      what does cancel a thread mean?? Why would you ask for that?? I think the first few pages of this thread is very informative. Occasionally, on all the pages, if you read through the ugly stuff, you can find good information.( OK maybe not all the pages ) I have read other threads where things have gotten ugly. But the post seems to go on and reach a better place. I would not want to see good information deleted?? Why should the moderator get involved and ban people?? These people, myself included, keep coming to this thread to see what people are saying. If they don't like it, stop coming, stop posting!! I think the thread has become repetitive and ugly, and anybody reading it from the beginning is sure to realize where everyone stands.


      Why do you keep reading the thread (and posting on it) if you are so disgusted by it??

      I have only seen the "reporting you to Joe O'Brien" thing once before... No shock...it was Celia then too. I wonder why Celia evokes such anger from people that words spiral to an ugly place and then she claims "persecution". Seems that is becoming her theme song. Perhaps the moderator should review that?!?

      I think a thread about vertebral stapling is important to the NSF!! It is another option parents can research. The spine cor thread is like 160 pages now. That's great. People give and take information almost daily on that thread. Why can't we have that with stapling?? A lot of people have questions about stapling. Some people on this forum have really helpful information to give on VBS. Let them give it.

      I hope anybody on this forum new or not new will ask their questions. The VBS moms are very thick skinned. We will continue to read and post on this forum looking to help others and be helped!!

      Respectfully,
      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


      • #93
        I have no intention of deleting anything I have said!! I stand behind myself and every remark I have posted. Let's just go forward from here

        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


        • #94
          May I ask one teensy little question since I have been accused of posting "outdated misleading information"???? How are the studies "outdated" when the article was published 2 years ago?

          Having had endless "discussions" with Structural75, nothing can faze me!
          Last edited by Celia; 11-26-2007, 12:44 PM. Reason: typo

          Canadian eh
          Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

          Comment


          • #95
            Nice, Celia ... try to play off asking "a teensy innocent question", and finish it with a "sticking tongue out" emoticon.

            Gerbo, YOUR buddy has NO intention of changing her tone, and she's made that *quite* obvious.
            Fusion is NOT the end of the world.
            AIDS Walk Houston 2008 5K @ 33 days post op!


            41, dx'd JIS & Boston braced @ 10
            Pre-op ±53°, Post-op < 20°
            Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


            VIEW MY X-RAYS
            EMAIL ME

            Comment


            • #96
              Two years almost 3 is a long time when it comes to "medical" studies ~ much of the criteria has changed.

              I agree there is much relevent info for the entire thread to be deleted and aside from my "sarcastic remarks" stand behind everything I have said certain things were said/typed in anger and prior to my first cup of coffee.

              ~A
              Amanda

              Mom to Lorena 7 yrs old
              Diagnosed 8/2005 ~ 26 Degree Curve
              Progressed to 42 Degrees by Dec 05
              Milwakee Brace 1/16/06 - 6/26/06
              Vertebral Stapling on 6/26/06 @ Shriners in Philadelphia
              26 Degree Post Op Curve
              Last X-Rays December 07 ~ 26 Degree Curve
              Email: domingo_amandapompa@msn.com
              Website: www.vertebralstapling.com
              YouTube Video: http://www.youtube.com/watch?v=n6GmX3K7FIs

              Comment


              • #97
                From my very basic understanding of stapling - 2 years has provided the time for many more children to benefit from vbs - so there is a lot more recent data. The stats from 2 years ago have been updated, as now about 200 kids have had the surgery.

                Celia- why are you posting about VBS still? Is it something you are considering for your daughter? It doesn't sound like it, so why don't you spend your time in posts that you are interested in - spinecor and serial casting. I don't spend my time on serial casting because it is not an option for my child - if vbs is not an option you are going to consider why do you post here? Your negativity is not helpful. You are not trying to have an honest conversation, you are simply trying to scare people away from learning about a procedure which may be very helpful for some kids.

                Comment


                • #98
                  because the results are very different now!! because the criteria is stricter now!! because more children, like 2-4 a month for the last two1/2 years, have been added to the mix!! because the percentage of successful situations including correction of the curve have increased!!

                  Perhaps you should have a consult with Dr Betz and ask your questions to him. Then you might offer some credibility to yourself!!

                  Respectfully,
                  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


                  • #99
                    Stephanie is absolutely correct.

                    If we are going to delete the stapling posts, which - if you read through all the clutter - contain some excellent information, then why don't we just delete the Spinecor thread, and all the other so-called "ugly" threads. Heck, just delete the entire forum for that matter.

                    I think a much better approach is, as Stephanie said, to ALL just move forward in a better manner. Doesn't that make more sense? How can we not respect Stephanie's feelings on this when not long ago, she WAS the newcomer, scared and seeking information - and I know she's glad she found it. Isn't that why the forum exists?

                    As Amanda stated, deleting posts will do nothing anyway unless folks agree to be more sensitive in the future. I'm for this approach instead and have no intention of deleting anything because I think it is just wrong and would be a HUGE disservice to many parents who come on here seeking information. My main goal is to be sure they get it (and support as well).

                    Regards to all,
                    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 didn't realize the emoticon had a tongue He just looks very happy to me.

                      Canadian eh
                      Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

                      Comment


                      • Originally posted by stephanieC
                        because the results are very different now!! because the criteria is stricter now!! because more children, like 2-4 a month for the last two1/2 years, have been added to the mix!! because the percentage of successful situations including correction of the curve have increased!!

                        Perhaps you should have a consult with Dr Betz and ask your questions to him. Then you might offer some credibility to yourself!!

                        Respectfully,
                        Stephanie
                        Thanks for clarifying some of that, Stephanie. Since I know you spent nearly an HOUR on the phone with one of Dr. Betz's colleagues from Shriners recently discussing the procedure, I consider this very VALID information.

                        Again, as I suggested above, anyone who is considering this procedure for their child should not hesitate to call Janet Cerrone. This way you will be assured of the most accurate and up-to-date information.
                        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


                        • Just to add a little something ~

                          There is a young lady who has come onto our VBS support site she was the 19th person ever stapled when she was in the 6th grade and is now a SR in high school I am copying her post to show everyone here how much of an impact this has had on a real person who has actually lived it ~ not a parent but a patient of Dr. Betz.


                          About five and a half years ago, when I was in 6th grade, I was
                          screened at school for scoliosis. Unfortunitley, they found a curve.
                          Luckily my grandfather is a Shriner and they were able to take me
                          right away down at Shriner's Hospital in Philadelphia. I was kept on
                          close watch by Dr. Betz because my x-rays were showing my curve as
                          increasing at least 3 degrees each month. He and Janet left me with a
                          decision: to wear a brace that there was only a 75% chance would
                          help, or have the stapling done and only have to wear the brace after
                          for one month and could be back in the full swing of things one month
                          later. After a long and hard decision, I decided to go with it. I am
                          an active, outgoing, and perservering girl, i could do it. So the day
                          of my 6th grade graduation I had my surgery. Although I went through
                          a lot of pain those first three days after surgery, the nurses at
                          Shriner's hospital were more than I could've ever asked for. I was
                          back to playing soccer and doing all activities at camp within a
                          month...So how was my curve after surgery? Just three days after
                          surgery my curve DECREASED from 25 degrees to seven. At that time I
                          was Dr. Betz best success. The staples were only meant to stop the
                          curve from progressing but instead, helped correct it as well. Dr.
                          Betz even had a documentary and a collage of pictures done on me!

                          So where am I today??? Since my surgery, I have accomplished more
                          things than probably the average teenager does. About six months
                          after my surgery I took up cheerleading, but had to relearn all my
                          gymnastics that I had already known before. It didnt take long
                          though, it was like riding a bike! Later that year, I wound up making
                          Varsity Cheerleading at my middle school and played soccer as well
                          through eighth grade. In ninth grade, I continued with Cheerleading
                          and decided that I wanted to do a pageant. In November 2005, I
                          entered in the Miss PA Teen USA pageant. I wound up being 4th runner
                          up of 186 girls!! And the next year, I met someone else in the
                          pageant who had the same surgery done!! Now, almost 6 years later I
                          am a senior in high school, preparing myself for the long hall of the
                          real world. I cant even imagine if I decided to go with the brace,
                          where I would be today. Would it have affected my school work from
                          pain? Would i have been able to even carry a book bag? Would I have
                          accomplished anywhere near the amount that I have up until now? In my
                          mind, I dont think so.

                          For anyone whose/whose child is considering getting the stapling, I
                          stand behind it 110%. Although it can be very painful, somethings in
                          life are worth enduring. It will be well, well worth it after that
                          first month. No having to worry about the pain of still having
                          scoliosis, not being able to play sports like other kids, or how this
                          may effect you in school. This procedure is absolutely phenomenal in
                          every way possible. If you are really considering this surgery, DO
                          NOT BE SCARED! There is absolutley nothing to worry about!

                          If anyone has any questions, please feel free to email me at
                          [deleted for security purposes] . I would LOVE to help anyone who is on this
                          same quest I was on nearly 6 years ago.
                          This is just to show that although there may be failures even with one success it makes it worth taking a shot ~ I have said this many times should my daughter go on to need fusion then stapling was successful because she reached that point brace free.

                          ~A
                          Last edited by amandap; 11-26-2007, 01:28 PM.
                          Amanda

                          Mom to Lorena 7 yrs old
                          Diagnosed 8/2005 ~ 26 Degree Curve
                          Progressed to 42 Degrees by Dec 05
                          Milwakee Brace 1/16/06 - 6/26/06
                          Vertebral Stapling on 6/26/06 @ Shriners in Philadelphia
                          26 Degree Post Op Curve
                          Last X-Rays December 07 ~ 26 Degree Curve
                          Email: domingo_amandapompa@msn.com
                          Website: www.vertebralstapling.com
                          YouTube Video: http://www.youtube.com/watch?v=n6GmX3K7FIs

                          Comment


                          • Stapling info

                            See! Sans Celias blurbs, the forum seems able to recollect nicely!

                            Since I had mentioned that some info was outdated, I maintain that statement. SO much has changed in two years. These are two years that have meant so very much to Miles' prognosis, and our family's hopes. Rewind to a year and a half ago, when we decided we were not satisfied with Miles living out his youth in a brace. At the time, even Dr. Betz and his colleagues sadly informed us that he would not be a candidate until about age 5 or 6, at best. Then, as of last year, the procedure was performed successfully on a 4 year old girl..who thrives! Since then, other 4 and 5 year old children have recieved this procedure, and staple sizes have been reconfigured to fit smaller bodies. As it goes right now, Dr Betz, Ashgar, and Cerrone have informed us that indeed..the procedure only betters by the minute and by this time next year, Miles shall be big enough ( and the nickel staples small enough) to make him eligible for this amazing, quality of life changing procedure.
                            This is firsthand information from the pioneers of the procedure. It is amazing and wonderful that continuing research lends to even younger children qualifying for this procedure--thus saving them from the fear, anxiety and stress that I know some of the older children must endure. The success rates of the cases I follow, and the long term cases all fare so incredible well. I too, advise any new parents here interested in the procedure to contact Janet Cerrone at Shriners, and to Google ( or GOODSEARCH!) VBS and include Dr Betz' name in the search. ( just be careful of the materials dates)
                            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


                            • well, in the spirit of cooperation and openness; which published studies/ articles give more up to date information then the ones quoted by celia??

                              Comment


                              • Oh, I forgot to add this (and I don't want to edit my post)...but in addition to contacting Janet at Shriners, if anyone would like to visit our Vertebral Support site, here's the link:

                                http://health.groups.yahoo.com/group/staplingsupport/

                                There are over 40 members, mostly parents of kids who've had the stapling (or are waiting for a surgery date) and we just got a new member, an actual patient, now 17, who had the stapling when she was 11 or 12 and is doing wonderfully. There are also links, articles, first-hand accounts of the surgery, recovery, etc.
                                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

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