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Thread: Vertebral Stapling ~ 1 Yr Post Op

  1. #61
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    Quote Originally Posted by Celia Vogel
    The fact that you and Maria would prefer to privately e-mail prospective parents information on vertebral stapling does appear to be very "cloak and dagger".
    As I think Amanda mentioned in a previous post, a lot of people (and many have emailed me to this effect over the past few days) would rather correspond by e-mail so they don't have to deal with this nonsense. They heard you already - and now they want to talk to people with personal experience about a procedure that they are ALREADY looking into on their own.

    You also asked who this person is that does not come on the forum anymore because of your posts? Of course, we are not going to say who it is - it's not our place to do so. I told you a lot of folks aren't as thick-skinned as Amanda and I are and, unfortunately, you've scared off a very valuable member of our group. Rest assured, this person does still participate in discussions by e-mail - very cloak and dagger, I know.
    Last edited by mariaf; 07-11-2007 at 06:40 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/

  2. #62
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    Quote Originally Posted by mariaf
    You also asked who this person is that does not come on the forum anymore because of your posts? Of course, we are not going to say who it is - it's not our place to do so.....

    You are unbelievable!!!! With the exception of Structural75 I have *never* had a confrontation with another member on this forum! Structural75 has had many confrontations with other members! HOWEVER.....it's nice to know that you and Amanda have a very strong dislike for me and I will try to avoid your posts in the future! You are no friend of mine!
    Last edited by Celia; 07-11-2007 at 07:50 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

  3. #63
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    Zoe/Zoe's Mom,

    Thank you for sharing your thoughts about your experiences. I wish Lorena was old enough to express her thoughts.

    Isn't it amazing what the docs at Shriners can do for our children.

    I am eternally grateful to them.

    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


  4. #64
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    Celia,

    Somehow both you and Maria consider my views on vertebral stapling as a personal attack when in fact nothing could be further from the truth! Only time will tell if this surgical procedure is the right thing. If it isn't.... what then ???? Will you both rest easy at night knowing all the people you sought and managed to convince?!
    I don't consider your views a personal attack just as I don't consider them to be the TRUTH either; they are only your opinions. Which is what our problem is you respond to these parents as if you were an expert and know everything there is to know when in fact you know little to nothing and your opinions are sadly misguiding them.

    We have no option but to reply via email because every single time a discussion regarding vertebral stapling does pop up you have to have your say and you don't leave it at your 1 post you continue to do preciously what you are doing now and will not give up trying to discredit this procedure. The parent you scared of the forums was actually this exact same debate on SpineKids awhile back.

    I rest easy each and every night because I know that I made the best possible decision regarding my child and I know that if I can help one parent become more informed I've managed to help a child by making sure their parent has ALL the information needed to made an educated decision regarding their care.

    And I don't dislike you I said this earlier I feel you are a tremendous help to parents asking about spinecor or casting; however I do dislike the fact that you turn every stapling post into a personal mission that will turn people away from a valuable alternative to BRACING. Now will you rest easy each night knowing you scared some parent away from a viable alternative that could have possibly saved their child from fusion down the line?

    I said this in a previous post ~ post only to those parents asking for advise on the issues you know of. If you feel you must post on the stapling procedure leave it at your 1 post opinion and don't turn it into this personal mission/debate attacking those of us who are only trying to inform people.

    Amanda
    Last edited by amandap; 07-11-2007 at 08:33 AM.
    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


  5. #65
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    Quote Originally Posted by amandap
    [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.
    Only your opinion counts???? I have never claimed to be an expert as you did above.... I simply voice my opinions which I believe I'm entitled to do! Would you rather I keep my mouth shut? Got it!

    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

  6. #66
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    Quote Originally Posted by Celia Vogel
    With the exception of Structural75 I have *never* had a confrontation with another member on this forum! Structural75 has had many confrontations with other members!
    I am NOT referring to Structural75. I am referring to someone else who did not get into it with you, which is why there was no confrontation - she kept her mouth shut - but after a while she could not take it anymore when every time somebody asked about, or mentioned, the word "stapling" you went on the attack with your one-sided negativity and scare tactics.

    She said it gave her a headache.
    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/

  7. #67
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    Quote Originally Posted by amandap
    Celia,

    Now will you rest easy each night knowing you scared some parent away from a viable alternative that could have possibly saved their child from fusion down the line?

    An excellent point!

    There are surely SOME, not all but SOME children who will be spared fusion for having had the stapling. I believe that at least a few - if not more - of the first stapling patients (whose surgeries were performed about 5-6 years ago) have already passed their major growth spurt and have avoided fusion. However, when I get the CD from Shriners, this information - as well as a lot of other data that is CURRENT - will be on there, and I will share it with those considering the procedure to give them yet more valuable information so they can make an informed decision.

    Some parents have already asked me to send them copies (they did this by email - very cloak and dagger, I know).
    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/

  8. #68
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    Only your opinion counts???? I have never claimed to be an expert as you did above.... I simply voice my opinions which I believe I'm entitled to do! Would you rather I keep my mouth shut? Got it!
    There is nothing wrong with voicing your/our opinions but leave it at that ~ don't drag it on and on and on and on as you have with this as well as other stapling posts.

    You just see your side of things and don't try see the whole picture of what we are trying to say to you. Trust me when a parent asks me about stapling I do not sugar coat anything I tell them the facts, the risks involved, etc. My first sentence to any parent I have responded to is always "please understand that although this is considered minimally invasive surgery it is still very invasive".

    Can you at least try to understand that for a new parent asking for info your comments can scare someone off before getting all the info ~ this is the only point I've been trying to make you understand.

    Which validates my point that you never ever ever give up ~ your opinion regarding stapling has been noted - thank you, I'd ask that you let it rest but I know you won't.

    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


  9. #69
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    Quote Originally Posted by mariaf
    I am NOT referring to Structural75. I am referring to someone else who did not get into it with you, which is why there was no confrontation - she kept her mouth shut - but after a while she could not take it anymore when every time somebody asked about, or mentioned, the word "stapling" you went on the attack with your one-sided negativity and scare tactics.

    She said it gave her a headache.

    There are many threads on Spinekids where vertebral stapling is discussed and I don't think I'm in *any* of those discussions with the exception of ONE!!!! Was that ONE too many for you I think I know now who you are referring to! I believe her daughter subsequently suffered a major complication from the procedure which required a second emergency surgery to replace staples which had not stayed in place and she stopped posting. Anyone who would call this a *minor* complication has got to be kidding!!!!! But enough said..... I'll just keep my mouth shut!
    Last edited by Celia; 07-12-2007 at 12:08 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

  10. #70
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    I believe her daughter subsequently suffered a major complication from the procedure and stopped posting! But I'll just keep my mouth shut!
    That would be incorrect ~ there were no major complications with the procedure. There was one minor issue which was corrected and she is doing wonderful!

    With each case the doctors learn something new. If she still posted she'd tell you how happy they are with their decision because had they not gone through with the stapling she is certain that her daughter would have had to have fusion by now.

    Please get your facts straight before posting inaccurate information.

    Amanda
    Last edited by amandap; 07-11-2007 at 10:49 AM.
    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


  11. #71
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    Quote Originally Posted by amandap
    ....With each case the doctors learn something new.

    This is the point I have been trying to make all along! Do we really want countless children undergoing an experimental surgical procedure which doctors have yet to perfect and with unknown results? A lot of these children have curves which many orthopaedic doctors would not even consider treating or could be treated in a less invasive way. I know none of you value my opinions but that's my final word on this!

    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

  12. #72
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    Quote Originally Posted by amandap


    If she still posted she'd tell you how happy they are with their decision because had they not gone through with the stapling she is certain that her daughter would have had to have fusion by now.
    Amanda
    That is exactly what this mom has said to me as well. She stopped posting because she didn't want to get into an argument. She is still a strong advocate for the stapling - for kids who can benefit the most - namely those who would most likely otherwise face fusion and those kids facing many years of bracing. She shares information and her experiences freely on the subject with parents all the time - just not on this forum because she doesn't want to argue and defend everything she says over and over again.

    She said she would do it all over again in a heartbeat because her daughter is brace free and it's looking more and more like she may very well avoid fusion because her curve has decreased from what it was and has remained stable. Her husband happens to be a physician and THEY made this decision for THEIR child after much soul searching and research. She was one of those parents that I helped by sharing my experience and she has thanked me a dozen times.
    Last edited by mariaf; 07-12-2007 at 09:13 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/

  13. #73
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    congratulations on your 1 year mine is august 10th!

  14. #74
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    Melissa,

    Congratulations to YOU on your "almost one year anniversary" as well
    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/

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