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  • #61
    Celia can have her opinion and EVERYONE knows what it is
    I think there might be some misunderstanding here which seems to have an inflammatory effect

    one way round this would be for you to define what you think Celia's opinion is, and for Celia to say what her opinion is, and compare notes.

    re other "methods" being subjected to "critical appraisal" (or "attack" as you put it, and feel it I suppose); chiropracters and SI practitioners usually have a very hard time here, anything more alternative than those don't seem to have a chance at all, most forms of bracing (including spinecor) have been and are still looked at critically. (for that matter, my "chosen" method, spinecor, is the one I look at most critially of all)

    and for the record; i think this stapling is fascinating and will follow further developments with regards to this technique with interest. Suppose it really needs a spine with lots of growth left to work? Ofcourse, nobody in the UK is doing this anyway, so interest will have to remain academic......

    Comment


    • #62
      Originally posted by gerbo
      Suppose it really needs a spine with lots of growth left to work?
      Yes, Gerbo, one of the criteria in order to be a candidate for the stapling is that the child must have a considerable amount of growth left to do. I know several children who were told they were not candidates because they were almost done growing.

      And I agree with you that we, as parents, tend to look most critically at our own method of choice. After all, that's where the stakes are the highest. Before we decided on the stapling for David, I played devil's advocate in our house, questioning, researching, talking to other parents and just agonizing about the decision over and over again. (Ultimately, we decided it was the best option available to us.)

      That's why I say that I don't think parents need to hear someone bringing up what THEY feel are the negatives about it over and over on this forum - Believe me, as someone who has been there, before you put your child on the operating table, the decision weighs VERY, VERY heavy on you. Nobody makes that decision lightly.

      As far as doctors in the UK doing it, it will happen eventually - I'm just not sure when. Within the past year or two, stapling went from being primarily done in Philadelphia to now being done in Los Angeles, Atlanta, Boston, etc. AND several folks have said their insurance companies covered it!
      Last edited by mariaf; 11-22-2007, 03:23 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


      • #63
        Hi Folks,

        I don't want to step into the middle of this one, ...been there before and it's not pleasant.

        I do want to say a couple of things though seeing as I have been on the receiving end of constant opposition and such.

        I wish all the families involved in this vertebral stapling discussion the best in whatever they choose. These folks, and others in similar shoes, are surely thinking long and hard about their options. And they're considering something that doesn't have as widespread acceptance as other surgical methods. Those are people that really need the support right now. They don't get the automatic reassurance that there are thousands of others who have been there and gotten through it OK. They are potentially making a brave decision to do something 'new'. I think we owe them 100% of our support for that.

        The same should ring true for other anatomically and physiologically sound approaches, surgical or otherwise.

        Mariaf - I can relate to a very small degree, as I've been bombarded by opposition with almost every post I've put up on non-surgical approaches. Although I don't compare it to you're situation by any means, I realize it's difficult. And I too wish that people can come onto this forum and learn about and ask questions regarding both surgical and non-surgical approaches.

        Gerbo- I would obviously agree with your comment on chiro or SI having a hard time here... But I hope that somehow doesn't justify the hard time they receive. Being critical is important, but that means going well beyond the studies when evaluating their potentially relative application. If there is no room on this forum for "Non-Surgical" approaches besides bracing for instance, then why not just remove the category altogether and leave "Bracing" as the only non-surgical option?

        Vertebral stapling began with an idea based on sound anatomical understanding and technology... . I think the Doctors are the only ones at this point capable of debating its potential viability or success for each individual.

        Best to you all.
        Structural

        Comment


        • #64
          Originally posted by structural75
          Vertebral stapling began with an idea based on sound anatomical understanding and technology... . I think the Doctors are the only ones at this point capable of debating its potential viability or success for each individual.
          That's very true, Structural. That is why every parent considering the vertebral stapling goes for a consult, usually in Philadelphia where they've done the vast majority of these procedures (although as I posted, it is now being done in several major cities by some very prominent orthos). The parents I've spoken to are extremely well-informed and ask the doctors some very tough questions (a few that I hadn't even thought of!).

          Some kids are turned down and are not stapling candidates (not enough growth left, too large a curve, etc.). But if, after looking at x-rays and taking the child's complete medical history, Dr. Betz and his colleagues believe a child has a very good chance of success, then they are offered the stapling. Thus far, the results have been excellent. Is it for everybody? No. Is it a great option for many? IMHO, yes.

          If one's child is a candidate, the next thing the doctors say is "talk to some other parents whose kids have been through it". To me, that's a very good sign. I find it comforting when a doctor wants you to talk to their former patients. They don't sugarcoat anything about the procedure and have nothing to hide.

          Bottom line - every parent should be entitled, after careful consideration, to make their own decision for their child (whether they decide on stapling or another method) free from excess negativity or scare tactics. I can tell you from personal experience, these are not decisions that anyone is making lightly.

          Thanks for your support.
          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


          • #65
            You're welcome... . Well said by the way.

            Comment


            • #66
              Hi Structural,

              I had started a thread a couple of days ago and am still looking for some information regarding alternative therapies.

              I would really appreciate your opininon, as well as the opinion of others who have had some experience with any type of alternative therapy. (when I say alternative, I simply mean no surgery and no bracing)

              I am looking for info regarding my second daughters current situation.

              I really do not wish to post on this thread anymore. Would you mind answering in the thread I had started? I would really appreciate it. The thread is under idiopathic, juvenile,and is titled, Have alternative therapies shown effectiveness?

              Thank you,
              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


              • #67
                thoughts

                Hi

                After perusing this VBS thread, I had some thoughts to share. Maria F brings to the table some very real points regarding the importance of being sure that comments made here do not sway or scare those who are new here, scared, unsure, and looking for support and advice.
                Let me backtrack to my first visit (and only other than this) visit here. It was a few days post my son's diagnoses. I had not yet begun my own research--and came here for support and advice. We were preparing to put our then 15 month old into a brace. I posted, and below is an exerpt from Celia Vogels reply. (The entire post can be referenced in archives):

                ***"Actually, bracing has been proven ineffective for infantile scoliosis. There was a study by Dr. Min Mehta which showed that children who were braced instead of casted for benign progressive infantile scoliosis during the first three years of life - eventually *ALL* progressed to surgery levels and required spinal fusion at some point during their growth. The article is entitled "Infantile Idiopathic Scoliosis" by Dr. Min Mehta"**** (end quote)

                Although the abstract which this was taken from exists, it is dated and biased, as Mehta specializes in serial casting.Bracing typically is a starting point for all scoliosis patients and to reference an abstract which suggests that it does not work is absurd. Cases vary, of course but to make those your welcoming words? Another personality type may have taken this seriously and not followed through with it, or become convinced that serial casting would be the only course of treatment. The bottom line is that the choice of responding words from Ms. Vogel indeed scared us as parents, and confused us as to the role of the "support forum". I never returned, and thankfully found a group of parents who better provide simple, unbiased SUPPORT. I agree with the poster who stated that clinical speak, and procedure debates are best left to the professionals, and at least the parents who have actual experience with any said procedure. It is unfair and selfish to demean a viable option simply because it may not be the right answer for your particular situation. In summary, yes..overheated and underthought opinions can indeed scare newbies away from a site meant to help them.
                I would like to also address the debate regarding VBS being experimental. Lets go with new. It is a relatively new procedure. Bypass surgery..organ transplants..even plastic surgery were all once new, but can we all not take a moment to reflect on someone close to us who these procedures have saved or dramatically increased the life quality of? Likely. I'll suppose that within the last year, anyone reading this has tried either a prescription or OTC medicine which has been new to the market, and gained cure, control, or relief from it. These examples pale in comparison to the weight of parents deciding on VBS for their child. That is my point. There is no room for anyone to discredit such a viable procedure, then to use the excuse of being "strongly opinionated" when they dont like the feedback from parents who have lived it, and whose children's lives were improved because of it.
                In close, I was sorely disappointed to see that anyone would find "humor" or "comedy" in the situation of scoliosis, or any conversations regarding it. I must say that speak such as that makes a mockery of a site where I see others doing there best to advise and support one another. There is often "that person" in any given situation, who takes pleasure in eluding that they know something about everything. What they do not seem to see is that, to others...it really shows.I can only hope that no family new to this would go soley on the advice of one who, while ON here alot...may offer limited, dated and opinionated advice, and that they do scores of their own research, as well as consult with top professionals.
                I commend the posters like Maria, Deshea, Amanda and Stephanie..who bring experience, caring and compassion to this, and other ( less combative) support forums. Keep doing what you are doing ladies, as you have touched the lives of others is such positive ways. Thank you, and well wishes to all.

                Best,
                Adele
                mother of Miles (2)
                35* curve----26* after BRACING
                VBS tentative for 2008, with DR BETZ
                Mom of Allie(12) and Ben (10)
                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


                • #68
                  I think it is clear that different parents have different needs at different times of the whole journey we all have to get through. Some people want their own opinion confirmed and enforced, and who can blame them as at least it provides a bit of security in this whole territory where the only certainty is that nothing is certain. Others will want an as wide as possible range of opinions as only with those in hand one can really come to an as balanced and realistic position as possible.

                  Some people need serious and very considered posts, whilst others are happy to share some happy events and at times have a bit of fun, as a bit of humor makes it easier to cope with what at times is a heavy burden. Nobody here will take scoliosis lightly, we all have come through too much, but at times we do try to take ourselves and our life with a pinch of salt and even dare to smile.

                  some people want and need to put themselves completely in the hands of their doctors, and fortunately that is often valid, whilst others have discocered through experience that their doctors were just not interested, not up to date, dismissive andfelt that the only way of achieving treatment to a hhigh enough standard for their child was by really getting involved themselves, study, learn and challenge, just to try to push the bounderies of what can and cannot be done a bit forward.

                  The trick here really is to take account of the fact that 100's of people with different backgrounds and experiences will post answers to replies and somehow you need to work out what helps you and what doesn't, but also realise that a bit of information that doesn't suit you at this stage might be very useful for somebody else, and even could be useful to yourself at a later stage, and that the person you feel you cannot stand at the moment might give you the key bit of information later on which could make all the difference to yourself or your child.

                  Comment


                  • #69
                    Originally posted by milesmom
                    ... ....In close, I was sorely disappointed to see that anyone would find "humor" or "comedy" in the situation of scoliosis, or any conversations regarding it. I must say that speak such as that makes a mockery of a site where I see others doing there best to advise and support one another

                    Why don't we just start a separate thread entitled "What we don't like about Celia Vogel"?


                    What I found humorous was Amanda's post juxtaposed with the one I had made immediately before that! My plea to question authority and not put blind faith in the medical profession because as we know it's a prescription for disaster as is evident by so many children with progressive infantile scoliosis whose lives have been destroyed by well meaning/uncaring misinformed doctors!!!! It's a tragedy! Don't get me wrong, I'm not saying Dr. Betz is uncaring and misinformed. He's an AMAZING doctor! Amanda retorted by attacking the spinecor brace and the doctors in Montreal! UNBELIEVABLE!!!!! This I found hilarious!

                    I also noticed A LOT of editing going on days after some of the posts were made and these personal attacks directed at me and my daughter are unwarranted and hurtful! It basically amounts a to lynch mob mentality with Amanda, Pam and Maria leading the posse with the proverbial pitchforks in hand. It's shameful and a disgrace!
                    Last edited by Celia; 11-24-2007, 05:07 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


                    • #70
                      I agree personal attacks have no place - just like misinformation - on this board.

                      Neither does warped "humor", righteous indignation, accusing someone of being someone else, or a victim mentality from someone who claims persecution - yet wields a very large spoon of their own.

                      (And, BTW, if I see if left out a comma or didn't adequately express what I wanted to convey, I *might* edit this post. That's neither here nor there.)

                      I happened upon this thread because the science - and the concept - of Spinecor, VBS and what might be available NOW for children was of interest. Some of you don't understand how many more choices you have - and what a Godsend my *mother* would have found in being able to discuss what was happening to MY body without blindly following what my ortho dictated for treatment.

                      What it boils down to is this: Every parent gathers every bit of *factual* info they can to help THEIR child (very different options than MY parents had ... would you like Milwaukee, Charleston, Boston or Harrington?); and no different than I'm doing for myself as an adult.

                      Someone called me a pioneer: I don't see it that way. Your children are the true pioneers.

                      My case is nothing more than the result of conventional treatments that failed in the 70's for some. I will say adult surgical techniques have progressed tremendously in the last 10, 20 and 30 years. Someone told me in a way I was fortunate I didn't *have* surgery years ago ... and I'm very inclined to agree.

                      It's my fervent wish the long term efficacy of Spinecor, VBS, and other new treatments will prove out. I hope the choices for treatment grow ~exponentially~ in the near term.

                      Even better would be continued gene identification and possible earlier detection/prevention of scoliosis.

                      I've lived with this condition for 30 years (I don't remember my back not hurting since I was 10), and I'd like nothing more than this board to someday be without reason to exist.

                      Regards,
                      Pam
                      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


                      • #71
                        Celia, could you edit your post again? I believe that last "adjustment" makes THREE times.

                        Every revision from you has eliminated a refererence (that immediately followed yours) in my post to what you originally wrote. Pretty ironic, I'd say, coming from someone who was recently screaming "people are editing their posts!".

                        Write the words, be an adult, live with them ... no matter how silly they make you look later.

                        Or just carry on ... anyone who's been following this thread knows you've changed the *entire* content of your original words.

                        Note ~mine~ *hasn't* been edited. And it stands in response to your *first* pass.

                        Transparency is SO unbecoming.

                        Regards,
                        Pam (who's spine may be crooked, but at least I HAVE one)
                        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


                        • #72
                          Originally posted by Celia Vogel
                          I also noticed A LOT of editing going on days after some of the posts were made and these personal attacks directed at me and my daughter are unwarranted and hurtful! It basically amounts a to lynch mob mentality with Amanda, Pam and Maria leading the posse with the proverbial pitchforks in hand. It's shameful and a disgrace!
                          Celia,

                          Can you point out one instance where ANYONE EVER attacked (or even mentioned) your daughter???

                          Are you so desparate to make some of us look bad that you are simply making stuff up?

                          I really had no desire to return to this discussion, but seeing you falsely accuse members of verbally attacking your daughter was a bit much for me. Someone asked you earlier in this thread if you actually read what other members said - or if you just posted. After this false accusation you made, I am inclined to think it is the latter.
                          Last edited by mariaf; 11-26-2007, 05:41 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


                          • #73
                            Oh, hell ... does this mean I have to go edit a post so she has proof? I'm really busy right now ...
                            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


                            • #74
                              ... additionally, I'm short on funds ... and a pitchfork is NOT in the budget. Will a serving fork suffice?
                              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


                              • #75
                                The content of my post is exactly the same as before. I edited for spelling.

                                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

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