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  • #16
    Originally posted by nate03
    Hi Sharon,
    I am glad you got the news you wanted to hear today.

    Please remember that people post here to learn, share opinions, and offer insight..........what good would a forum be if everyone just posted "that's great" all of the time - nobody would bother to post.........obviously support is important too, but most of us come here to learn and hear of others experiences too.

    Best of luck with the surgery!
    -Cara
    I disagree with your analysis of why I see things the way I do.

    Also, Pam's experiences are not necessarily relevant to other people. She needs to learn that.

    Thanks for the good wishes.

    sharon
    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


    • #17
      Originally posted by txmarinemom
      Carmell and Melissa, re: transfusion, I didn't clarify "for thoracic fusions".

      Braydon's and Nicole were more involved, if I'm not mistaken(?).
      You don't know a damn thing about my daughter though you pretend.

      GO AWAY

      sharon
      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


      • #18
        Nicole had a very large rotation by the time we had the surgery. He said that the method that they would use to de-rotate and correct was a good one but that the downside was that it would take long and she would lose blood. I am sure many of the kids aren't rotated as much. I was so hoping that he was wrong and that she wouldn't need the blood transfusions. But she did. But I was glad that I was mentally prepared for that.
        Melissa
        From Bucks County, Pa., USA

        Mom to Matthew,19, Jessica, 17, and Nicole, 14
        Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

        Comment


        • #19
          Originally posted by MATJESNIC
          Nicole had a very large rotation by the time we had the surgery. He said that the method that they would use to de-rotate and correct was a good one but that the downside was that it would take long and she would lose blood. I am sure many of the kids aren't rotated as much. I was so hoping that he was wrong and that she wouldn't need the blood transfusions. But she did. But I was glad that I was mentally prepared for that.
          Well, blood transfusion is very very very safe these days. That's why he doesn't have kids self donate very often. Her fusion isn't that long and given that only 30% of these types of patients need transfusions, I'm betting she won't need one.

          I got four units when I bled out with my ruptured ectopic and didn't contract anything. There's one data point!

          I asked about the correction for the rib hump. S definitely has one. He said it would be very much improved but not perfect.

          I asked about rib removal given they grow back within 2-3 months and he said it was rarely done any more.

          S is very flexible and we are getting this early. I hope she gets a very good correction after going through this.

          sharon
          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


          • #20
            Originally posted by Pooka1
            Well, blood transfusion is very very very safe these days.
            Did I miss where someone questioned the safety of the blood bank stock? Agreed ... it's very safe.
            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


            • #21
              Originally posted by txmarinemom
              Did I miss where someone questioned the safety of the blood bank stock? Agreed ... it's very safe.
              PHEW! That's one thing my surgeon managed to get right!

              Maybe I should have just had him consult you first all the really important matters since you know so much more than he does.
              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


              • #22
                Originally posted by Pooka1
                PHEW! That's one thing my surgeon managed to get right!

                Maybe I should have just had him consult you first all the really important matters since you know so much more than he does.
                *sigh. Nevermind. You're absolutely right, Sharon. I know *nothing*.

                Happy now? Will it make the big red letters go away?
                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


                • #23
                  Hi Sharon,

                  I'm glad your daughters appointment went well and I hope that her upcoming surgery goes well and recovery is smooth.

                  Everyone who's joined these group forums has valuable information to offer through their own personal experiences.

                  I don't visit here often but when I do I tend to share my personal experiences and take at face value others' experiences as well. I realize I am playing devils advocate but keep in mind that the advice Pam has given are just her experiences and though her situation may not be exactly as your daugthers it is still valuable.

                  Regardless of how great or horrible someones surgery turned out it's important to hear and keep in mind both good and bad experiences. While your doc may recommend or suggest one thing it's always a good idea to have a second, third or even fourth opinon. And while your doc may say one thing someone elses doc may say something else. The only thing I'm saying here is that it never hurts to have options and from what I can tell Pam is only trying to give you alternatives to keep in mind just in case.

                  Pam is very knowledgeable about scoliosis and various treatments because she's lived her life with scoliosis and has recently had fusion surgery so to me her experiences are invaluable.

                  I sincerely hope all goes exactly as your surgeon has said it would go otherwise I'm afraid your headed straight for disappointment should anything go awry. Please keep your eyes and ears open for any what if's in never hurts to be mentally prepared for the worst while being optimistic and hoping for the best.

                  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


                  • #24
                    Amanda,

                    Thanks so much for your reply.

                    I guess we are going to have to agree to disagree both on how Pam comes across and her apparent intentions.

                    I do not assume Pam's fusion surgery as an adult is necessarily relevant to my daughter's surgery and I don't understand why others might.

                    In re doctor's telling patients different things, how are us lay folks ever supposed to come to a bottom line on what is better or worse? Pam routinely concludes that if another surgeon does anything different than her surgeon, that other surgeon can't possibly be a specialist in this surgery. She has now implied that a few times. How comical is that? Given that our surgeon is in fact an expert on this, it is beyond comical. Her mistake on that, her inability to read for comprehension when misquoting folks, inter alia, necessarily undermines my opinion of her other statements.

                    ETA: I find the implication that I wouldn't get an expert in pediatric orthopedic surgery for AIS insulting. Pam has implied that a few times. Who would fail to get the appropriate expert for their child? It's like accusing me of being an incompetent parent. And she does it blithely. I'd like to see how blithe she is if someone impugns her parenting. You would see some hypocrisy there I bet.

                    In re being disappointed if anything goes awry, I think EVERYONE would feel that way, not just me. I know the risks. All I can do is get the best care for my daughter I can find. That's all anyone can do.

                    sharon
                    Last edited by Pooka1; 03-24-2008, 05:04 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."

                    Comment


                    • #25
                      I wish you luck sounds like the pre op went well, but I really don't think anyone is trying to ATTACK, i think theyr just trying to help u but...thats my opinion, best of luck
                      Danielle
                      14 Freshwoman
                      December 1st got no head the boston brace
                      Pre Brace Curves:18C 25T 30L
                      In brace curves: (1/23/08) 16C 20T 22L
                      In brace Curves: (5/21/08) 19C 19T 15L
                      We're Bringing CURVY BACK

                      Comment


                      • #26
                        Originally posted by ElleBelleCurvz
                        I wish you luck sounds like the pre op went well, but I really don't think anyone is trying to ATTACK, i think they're just trying to help u but...thats my opinion, best of luck
                        I would liken it to the situation where most horses who are abused are abused not out of violent attacks by people but out of ignorance. Reckless ignorance.

                        Thanks for the good wishes.

                        sharon
                        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


                        • #27
                          Originally posted by Pooka1
                          Amanda,

                          Thanks so much for your reply.

                          I guess we are going to have to agree to disagree both on how Pam comes across and her apparent intentions.

                          I do not assume Pam's fusion surgery as an adult is necessarily relevant to my daughter's surgery and I don't understand why others might.

                          In re doctor's telling patients different things, how are us lay folks ever supposed to come to a bottom line on what is better or worse? Pam routinely concludes that if another surgeon does anything different than her surgeon, that other surgeon can't possibly be a specialist in this surgery. She has now implied that a few times. How comical is that? Given that our surgeon is in fact an expert on this, it is beyond comical. Her mistake on that, her inability to read for comprehension when misquoting folks, inter alia, necessarily undermines my opinion of her other statements.

                          ETA: I find the implication that I wouldn't get an expert in pediatric orthopedic surgery for AIS insulting. Pam has implied that a few times. Who would fail to get the appropriate expert for their child? It's like accusing me of being an incompetent parent. And she does it blithely. I'd like to see how blithe she is if someone impugns her parenting. You would see some hypocrisy there I bet.

                          In re being disappointed if anything goes awry, I think EVERYONE would feel that way, not just me. I know the risks. All I can do is get the best care for my daughter I can find. That's all anyone can do.

                          sharon
                          Oh, please. Editing, editing, editing ... add in some Latin after you Google to make sure you've got the proper phrase ...

                          *yawn.

                          And, say what you want about my parenting ... at almost 19 and 20, I have been known to refer to them by names that would implicate I'm a loose woman. (snicker)

                          BTW, I guess I did ok. My oldest defends your rights to say whatever you want, wherever you want, and I'm proud he does - whether or not I agree with you.

                          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


                          • #28
                            Originally posted by txmarinemom
                            Oh, please. Editing, editing, editing ... add in some Latin after you Google to make sure you've got the proper phrase ...

                            *yawn.
                            I used the phrase "inter alia" in a research paper I published in 1993 in a peer-reviewed science journal based on some of my post doctoral research. So I've been familiar with the phrase at least that long.

                            In contrast, YOU just googled it to see what it meant. You wouldn't even know to italicize it or why to do so.

                            See how you project? See how transparent you are?

                            And people wonder why I think you are ignorant. I'm going to repost this exchange if it comes up again.

                            GO AWAY.

                            sharon
                            Last edited by Pooka1; 03-24-2008, 07:33 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."

                            Comment


                            • #29
                              Originally posted by Pooka1
                              I would liken it to the situation where most horses who are abused are abused not out of violent attacks by people but out of ignorance.
                              Originally posted by Pooka1
                              That said, my horse benefits from "chiro." My horse has pain on certain regions of his topline associated with his recovery from an injury. The vet does some quick push motion and the pain is instantly removed. Now this is obviously either freeing an impinged nerve or otherwise deadening the pain response because you canNOT produce a pain response on that portion of his back after the vet does the voodoo that he do.
                              Was your paper about horses?

                              You know Sharon, Pam is here trying to help people prepare for a surgery which she knows about first hand - why are you here? Just to argue with anyone who shares an opinion or advice that isn't what you want to hear. Is this why you only got 1 opinion before major surgery for your daughter? Liked that one, so why listen to anything else?

                              I remember in the last thread you mistakenly quoted Maria, saying that you had already told her who the dr was, when you had not - she did not get angry at you, yet you cannot let go of Pam's misread and keep bringing it up all the time, even after she apologized.

                              The rest of us are here to learn from each other, if you don't want anyone's opinion here, why do you post? Maybe someone, including Pam, will make a point that could make a big difference in your daughter's surgery or recovery - but you think you already know all the answers - so Why do you post?
                              Cara, Mom to Nathan
                              Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
                              Boston Back Brace 8/07 – 12/07
                              VBS 12/10/07 Boston Children's Hospital
                              Dr. Hresko
                              40 Degrees before VBS
                              11 Degrees now!! (2012)

                              Nathan's VBS Video

                              www.vertebralstapling.com

                              Comment


                              • #30
                                Originally posted by nate03
                                Was your paper about horses?

                                You know Sharon, Pam is here trying to help people prepare for a surgery which she knows about first hand - why are you here? Just to argue with anyone who shares an opinion or advice that isn't what you want to hear. Is this why you only got 1 opinion before major surgery for your daughter? Liked that one, so why listen to anything else?

                                I remember in the last thread you mistakenly quoted Maria, saying that you had already told her who the dr was, when you had not - she did not get angry at you, yet you cannot let go of Pam's misread and keep bringing it up all the time, even after she apologized.

                                The rest of us are here to learn from each other, if you don't want anyone's opinion here, why do you post? Maybe someone, including Pam, will make a point that could make a big difference in your daughter's surgery or recovery - but you think you already know all the answers - so Why do you post?
                                all i can say, AMEN
                                Danielle
                                14 Freshwoman
                                December 1st got no head the boston brace
                                Pre Brace Curves:18C 25T 30L
                                In brace curves: (1/23/08) 16C 20T 22L
                                In brace Curves: (5/21/08) 19C 19T 15L
                                We're Bringing CURVY BACK

                                Comment

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