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  • #16
    Originally posted by mariaf View Post
    There have been times I have listened to, and trusted, doctors when I should have questioned them more. I regret that. But we can't go back - we must live and learn.
    But you can't get blood from a stone. What could a surgeon have credibly said to Ruth three years ago? Wouldn't it be that this is extremely experimental surgery, there are few cases, some failures, looks promising, etc.? Ruth understandably is trying to avoid surgery for her daughter per se. People who are trying to avoid PROVEN surgery are not likely to go for highly experimental surgery, yes?

    Sharon - I guess three years ago there were a lot fewer doctors on board with VBS than there are today. Just in the past several months, the number of doctors that I am aware of (we keep a list on the VBS site of those we know of) has probably tripled. I would say a significant increase has happened over the last year in general though. I like the fact that this list includes some very prominent doctors.
    Yes that's what is know NOW. The decision would have been much more dicey, especially for AIS, three years ago. If her daughter was out of VBS range then, nobody knew it and VBS would likely have failed had she pursued it.

    Frankly, given the state of fusion surgery for AIS even three years ago, I don't know why they were stapling AIS kids who were fusion candidates. JIS is a completely different scenario. Fusion is putting AIS kids back in the general population on future back issues now and three years ago. VBS looks like it might do that also but that certainly wasn't known three years ago.

    As for whether or not one would have chosen VBS three years ago (or five years ago as I did), a lot would depend on the individual situation. I agree with you that I would be much quicker to opt for VBS for a younger child than an older one, for many reasons.
    Agreed.
    Last edited by Pooka1; 03-20-2009, 12:25 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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    • #17
      Originally posted by Pooka1 View Post
      But you can't get blood from a stone. What could a surgeon have credibly said to Ruth three years ago? Wouldn't it be that this is extremely experimental surgery, there are few cases, some failures, looks promising, etc.? Ruth understandably is trying to avoid surgery for her daughter per se. People who are trying to avoid PROVEN surgery are not likely to go for highly experimental surgery, yes?
      Yes. I was simply trying to say to Ruth that she should not beat herself up as we all make mistakes.
      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


      • #18
        Originally posted by mariaf View Post
        Yes. I was simply trying to say to Ruth that she should not beat herself up as we all make mistakes.
        I don't think Ruth made any mistake and I have no reason to think the surgeon did either.

        I suspect had she had the entire straight dope on VBS as it existed three years ago, she probably wouldn't have have chosen it. I don't know that, obviously. Further, if her daughter was out of VBS range, it's a damn good thing she didn't choose it.
        Sharon, mother of identical twin girls with scoliosis

        No island of sanity.

        Question: What do you call alternative medicine that works?
        Answer: Medicine


        "We are all African."

        Comment


        • #19
          Originally posted by Pooka1 View Post
          Frankly, given the state of fusion surgery for AIS even three years ago, I don't know why they were stapling AIS kids who were fusion candidates.
          I understand why that point might be raised in certain cases. But I also think the doctors considered many things.

          VBS is a less invasive surgery.

          It requires a shorter hospital stay and has a quicker recovery time GENERALLY.

          Again, in GENERAL, the patients need less pain medication. They retain ALL of the flexibility in the spine.

          These are just some reasons I have heard that folks might choose one surgery over the other, provided the doctors felt there was a reasonably good chance of success.

          So, on the one hand I agree with you that some kids maybe should have gone straight to fusion. But on the other hand, I'm sure there are some AIS cases where they had VBS and never needed fusion. You may say they had one surgery anyway. But some parents (myself included) might opt for a surgery they viewed as an "easier" one, for lack of a better word.

          Certainly a lot of valid points on both sides.
          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


          • #20
            Originally posted by Pooka1 View Post
            I don't think Ruth made any mistake and I have no reason to think the surgeon did either.

            I suspect had she had the entire straight dope on VBS as it existed three years ago, she probably wouldn't have have chosen it. I don't know that, obviously. Further, if her daughter was out of VBS range, it's a damn good thing she didn't choose it.
            I did not mean to imply I thought Ruth made a mistake. But if SHE felt she did, I did not want her to beat herself up over it.

            Case closed.
            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


            • #21
              I don't have too much info since I don't really know much about spinecor, but I was treated and braced at CT Children's Hospital in Hartford (boston brace) for 7 years. Everyone I saw there was very friendly, helpful and respectful. Even when I was very young they always made sure that I knew exactly what was going on and at least made me feel like I had some say in the process. If they have the option that you are looking for, then I would definitely recommend going there. I don't know if that helps, but I figured another perspective might help. Good luck!
              Sarah
              22 year old grad student
              Boston brace from 12-14
              surgery on June 1, 2009 T3 to L2
              Yale New Haven Hospital Dr. Grauer
              Thoracic curve 47*
              Thoracolumbar curve 54*

              Surgery Photos
              http://www.facebook.com/album.php?ai...8&l=a2a5799140

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              • #22
                Lexi's mom....I have no, zero, nada experience with anything as we are only watching my son's curve at this point....but....I just wanted to add a smidget of info. I read a LOT of posts on here and I read a LOT about Shriners....so, I just wanted to offer up....that there is a Shriners in Springfield. Not too sure where you are in relation to Western Mass, but if you are only 90 minutes from Hartford....you aren't too far! I lived in East Longmeadow most of my life before coming to Texas so....any way......if it's ever needed, you know Shriners is close. : )

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                • #23
                  Lexi's mom,

                  This is a very interesting thread with a lot of good information. I just want to go back to your first post where you talked about being in shock when you learned about your daughter's curve and wondering how you didn't see it. I empathize with you because I feel exactly the same way--my daughter is older, 16. I'm doing the best I can to sort through all the information and be supportive to my daughter but I don't know how long it will take for the guilt to subside. (guilt that I missed seeing it, I mean) Curves, I guess, are not always that obvious to the untrained eye or even the semi-trained eye. Her pediatrician missed it, for example.

                  Good luck sorting it all out.

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