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Vertebral Stapling ~ 1 Yr Post Op

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  • #31
    Compared to growth rods, vertebral stapling sounds like a great option for children with early onset scoliosis if it means they can avoid repeated surgeries until the final spinal fusion during adolescence, not to mention those children where vertebral stapling is a success and they avoid spinal fusion altogether! I'm not anti vertebral stapling, I just don't believe that a kid with a 25 degree curve is malignant to warrant subjecting him/her to a very experimental surgical procedure that enables doctors to "test theories" for the greater good of future generations. Who knows what the long term implications on the health of these children is?

    I can see how vertebral stapling would be a very attractive alternative to spinal fusion and stapling curves when they're at 40 degrees or more when bracing won't do much good for a lot of children anyway but I don't agree with putting a child through the trauma of surgery when their curves are still at 20 degrees! It's ironic that most doctors are against bracing curves when they're 20 degrees but it's okay for surgery? Another major worry for me is that they're still testing these staples on goats and other live animals!!!

    Given my layman's interpretation of the studies pasted below, I can't see much difference between the 2003 and 2005 study except for time lapse. I did notice the criteria for failure increased for curves progressing greater/equal to 6 degrees in the 2003 study to curves progressing greater/equal to 10 degrees in the 2005 study. The two articles in question are therefore very misleading. It states that no child with a curve under 30 degrees progressed.... what they mean to say is that no child with a curve under 30 progressed more than 10 degrees! Curves that progressed less than 10 degrees say 8 degrees were not considered in the criteria for failure or progression. Given the short followup period, a curve that started at 28 degrees and is now 36 degrees would be in the success group!!! Another major difference between vertebral stapling statistics and brace studies statistics is that bracing studies followed patients until the *end* of skeletal maturity and compiled ALL the statistics at that point in time. The vertebral stapling study compiles results after a few years of growth - it's my understanding that curves remain relatively stable for a period of time, which would account for the *apparent* 80% success recorded with stapling.

    http://www.scoliosis-support.org/uploads/stapling1.pdf

    http://www.scoliosis-support.org/uploads/stapling2.pdf
    Last edited by Celia; 11-20-2007, 10:45 PM.

    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


    • #32
      I realize there really isn't much point in posting because you never ever ever give up ~ this is not a debate forum but I must point out to you AGAIN that per your comment

      I could see how vertebral stapling would be very attractive as an alternative to spinal fusion
      stapling is NOT an alternative for spinal fusion I reapeat stapling is NOT an alternative for spinal fusion. Vertebral stapling is only an alternative to bracing.

      Everyone here has their opinions and everyone here already knows your opinion regarding stapling please put it to rest already. Allow those of us who do trust in this procedure to continue to educate those who are asking for the info. Trust me when I say that Maria nor I give false hope or false information to these parents.

      However giving them only the negative does scare people. Please just stop!

      Amanda
      Last edited by amandap; 07-09-2007, 04:19 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


      • #33
        I don't know why you are both getting so upset????! Do you both have some vested interest in recruiting patients for dr. Betz ???? Because looking through all the posts on vertebral stapling it *really* appears that way! Yes, vertebral stapling would be a very attractive alternative to spinal fusion but it is not. I agree! I also don't believe in misleading unsuspecting parents into an experimental surgical procedure with unknown results and consequences which they may later regret!
        Last edited by Celia; 07-09-2007, 06:03 PM.

        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


        • #34
          Celia,

          I agree totally with what Amanda said - that there is no point in posting because you never give up. It seems you just love to argue. Didn't you have another heated "debate" with another member recently? Can't anyone have an opinion other than yours????

          Amanda and I have no more vested interest in recruiting patients for Dr. Betz than you do recruiting patients for Dr. Rivard or for any of the doctors who do serial casting. You share that list often and nobody has ever challenged you for making these suggestions nor have they accused you of having a vested interest in recruiting patients for these doctors. Maybe they should - so you'd see what it feels like and stop attacking others who are simply trying to help other parents by sharing what we know from OUR experiences. I have never said that stapling is right for every child. My suggestion is always to "get a consult". Intelligent parents can then make their own decisions. Or don't you think they are capable?

          I refer patients to Dr. Betz because I've been going to Shriners for nearly four years and have seen and met dozens and dozens of patients he has helped, some when others could not. Every time I am there I meet another grateful parent with another amazing story. I send patients to him because I know they'll be seeing one of the most highly regarded spinal surgeons in the country. As I mentioned earlier, your very own Dr. Rivard listed Dr. Betz as one of the two U.S. surgeons he'd recommend. Speaks volumes, doesn't it???

          You can post whatever you like, but my son - as well as Amanda's daughter -both look and feel great and are brace free and happy. I'm sorry if stapling success stories upset you - why don't you just stop reading them?
          Last edited by mariaf; 07-12-2007, 08:27 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


          • #35
            The other member you are referring to is an agitator and argues with anyone and everyone! I obviously said something about vertebral stapling that hit a nerve, would you or Amanda please tell me what I said that is inaccurate or misleading?

            As for serial casting, it's proven in numerous articles to reverse progressive infantile scoliosis and many many doctors world wide have been practicing this gentle non operative treatment for countless years, which was until recently unheard of in the U.S. I guess you would rather parents be in the dark about this treatment and subject their infant children to numerous surgeries? I don't go out of my way to sing the praise of one specific doctor because if I did I would be talking non stop about Dr. Hedden and how everyone should travel hundreds of miles to see him!!!! I also don't jump on threads where people are obviously considering a non surgical alternative and suggest a surgical one. It's quite presumptuous of you to encourage parents whose children have curves in the 20 degree range and have *never* tried bracing to undergo an experimental sugery which doctors know very little about! I share information with other parents in the Spinecor thread about dr. Rivard because they are seeing him well and it's nice to compare notes.
            Last edited by Celia; 07-09-2007, 10:26 PM.

            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


            • #36
              Originally posted by gillste
              hi can you explain to me what this stapling is and how it is done please, sorry if i sound a bit uneducated but my daughter only got her diagnosis in march so we are still learning.
              many thanks
              +
              good luck
              gill
              Celia,

              You said I jump on threads where people are obviously considering a non-surgical alternative and suggest a surgical one.

              Again, you are incorrect. Read the post above - the parent was asking for information.

              Parents hear of the stapling on their own and then want to know - from those of us who have been through it personally - what our experiences have been. I know that Amanda and I - and others - will continue to share our information with these parents. You obviously don't care for the fact that we do this - and you've made that clear - so can you please let us get back to sharing OUR EXPERIENCES with these other parents - which is what they are asking us to do.

              Please also try to understand that the reason I often mention the stapling option is that I WISH SOMEONE HAD TOLD ME SOONER- I guess that's the nerve you hit - Trying to prevent me from doing for another parent what I wish someone had done for me!!!

              You also often share incorrect information (I guess since you don't have personal experience with any of the doctors who do the stapling) such as that they staple 20 degree curves. If you walked in with a 20 degree curve, they would NOT routinely staple it. But you'd criticize that too - because I have often heard you criticize doctors who "watch and wait" with regard to smaller curves. Then you criticize other doctors for performing, according to you, unnecessary surgeries. (Nobody likes surgery - but it has its place.) You criticize yet other doctors for being in it for the money (which, as everyone knows, isn't the case at Shriners because they don't charge for their services).

              Again, can't anyone have an opinion or alternative that isn't yours?????
              Last edited by mariaf; 07-12-2007, 08:35 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


              • #37
                p.s. To anyone who would like the most up-to-date stats on the staplings, I just got an email in response to my request to Shriners for this information - and they are sending it to me on a CD. It's actually a copy of a talk given just last week I believe, by the doctor(s) who perform these procedures and it will answer many of the questions folks may have.

                Once I receive the CD, and can figure out how to transfer that information from the CD into a post on the forum (I'm a bit technologically challenged), I will share it with all of you

                I'm glad something good has come out of our lively debate here!
                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


                • #38
                  Do you really want me to go through every single thread where you have tried to convince a parent looking at nonsurgical alternatives to consider stapling? I have a moral conscience!


                  Please refer to Page 6 Table 1 Saftey Data in the following article:

                  http://www.scoliosis-support.org/uploads/stapling1.pdf

                  The following preop curves were reported for 6 children undergoing spinal stapling:

                  Patient #9 Pre-Op curve: 28 degrees


                  Patient # 11 Pre-Op curve: 22 degrees

                  Patient # 13 Pre-Op curve: 21 degrees

                  Patient #15 Pre-Op curve: 24 degrees

                  Patient #17 Pre-Op curve: 18 degrees

                  Patient #20 Pre-Op curve: 28/27 degrees
                  Last edited by Celia; 07-10-2007, 06:28 AM.

                  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


                  • #39
                    Originally posted by Celia Vogel
                    Do you really want me to go through every single thread where you have tried to convince a parent looking at a nonsurgical alternatives to consider stapling?
                    Feel free to do so - you seem to have a lot of time on your hands.

                    As stated above, I only wish someone had told me about the stapling sooner! As I stated above, that is the nerve you hit with me on the stapling - that you are trying to prevent me from doing what I wish someone had done for me - I wish someone had just told me about the other options and then let ME make the decision that I felt was right for MY child.

                    It seems like you don't think folks are intelligent enough to gather information about ALL of the options out there - be it surgical or non-surgical - and then make an informed decision that is right for THEIR child. Don't you think parents are generally smart enough to do that?
                    Last edited by mariaf; 07-12-2007, 08:41 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


                    • #40
                      For the sake of not repeating my self I'll paste what I stated above:

                      "It's quite presumptuous of you to encourage parents whose children have curves in the 20 degree range and have *never* tried bracing to undergo an experimental sugery which doctors know very little about!"

                      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


                      • #41
                        Originally posted by mariaf
                        Feel free to do so - you seem to have a lot of time on your hands.

                        Sorry, I don't have that much time! You and I both know I speak the truth!

                        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


                        • #42
                          Originally posted by Celia Vogel
                          "It's quite presumptuous of you to encourage parents whose children have curves in the 20 degree range and have *never* tried bracing to undergo an experimental sugery which doctors know very little about!"
                          Again, you compel me to repeat what I said because apparently you are not listening to me.

                          I wish someone had let me know about ALL of the options available to my son at the time - and then my husband and I could have done our homework and made our own intelligent, informed decision as his parents. I think everyone is entitled to do that. Apparently you disagree so let's just leave it at that.
                          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


                          • #43
                            Celia,

                            I'm done debating this issue with you because you don't listen.

                            Again you've stated:
                            Yes, vertebral stapling would be a very attractive alternative to spinal fusion but it is not.
                            It is not an alternative to spinal fusion and not once has Maria nor I ever told parents it is so you are fighting with us based on your own assumptions. The docs at Shriners never told me that stapling was an alternative for spinal fusion. What I was told was that IF the staples were successful she would ultimately avoid spinal fusion but never were we told this was an alternative to spinal fusion.

                            Stapling is only an alternative to bracing

                            You keep saying it would be an attractive alternative to spinal fusion when clearly this is not what it is ~ IMHO you somehow built this procedure up to be somthing it was not and then you were let down.

                            Most parents are intelligent enough to understand exactly what this procedure is and is not.

                            Please don't continue to give false information which is what you are doing by making that statement. By making that statment you are leading people to believe that stapling might be an alternative to fusion and then when they find out what it really is their hopes are completely smashed.

                            I'm sure you'll come back with some smart remark because that is what you do trying to prove your point and always having to have the last word it's very sad because I know of one parent (Maria knows who I'm referring to) who actually quit coming on these boards because of you. And I really wish she'd stayed on because she would be a tremendous asset to these boards.

                            I don't respond to people asking about spinecor because I know little to nothing of it, I don't respond to anyone asking questions I know little to nothing of. I do however respond to people asking questions about the stapling because I have personal experience with the procedure and know all about it.

                            Quit bashing something you know little to nothing of; and keep helping people who ask about what have experiences with and know all about.

                            And by the way I do not have a vested intrest in Dr. Betz or Shriners I'm just here to help others become aware of all the options out there.
                            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


                            • #44
                              Hi folks,

                              I thought long and hard about posting in this thread. I do not wish to get involved in an arguement.... However, as someone who is new to all this, I am grateful for all information and personal experiences posted on this site, and I mean all . What I don't understand is this hostility, particularly towards Celia. Having spent many hours reading threads on this forum, I can't see what she has done to annoy you so much. She is just sharing her knowledge and views, surely what these forums are all about. And exactly what everyone else is doing. It's all getting a bit personal for my liking.
                              UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
                              10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
                              Surgery due to take place early December 2011 at the RNOH, England.

                              Comment


                              • #45
                                I agree and do not want to argue or debate anything with anyone.

                                And I too have spent many hours reading many many posts and find that Ceclia really does help many other people with her knowlege and expertise regarding spinecore and casting.

                                However a few of us parents who have much more experience with the stapling procedure often times find us defending the procedure to her because anytime anyone asks about it she automatically responds with negativitiy. We just feel that she scares people off before they become fully aware of what it is.

                                Maria nor I have ever gotten into any real debates with her we usually tend to just turn the other cheek however yesterday I think we'd both just had enough of her negative comments.

                                My apologies to you if I have offended you in any way it was not my intention.

                                We are all here to support one another and offer advise if we have it.

                                Amanda
                                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

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