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  • But I'd rather not go back and rehash anything.
    why not? been done before, and really there is stuff from page 164 onwards which has no place on this site, and is still there for all to read! As much as I would encourage Celia to remove posts which are seen as sarcastic, I would urge AmandaP, Milesmum, StephanieC and yourself whether whole posts or parts of it can be editted away, without reducing the informative content.

    Also Maria, I have little doubt that Celia will agree that stapling has a place as a treatmentoption. The other side is that some thought need to be given by yourself and others how to respond to a post you do not agree with. As I found out through discussions with Structural, it is possible to be factual and informative, without taking things personally and getting angry.

    Does this alll make sense??

    Comment


    • Gerbo,

      The point was to move forward. Let's do just that.

      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


      • originally posted by Gerbo

        "Also Maria, I have little doubt that Celia will agree that stapling has a place as a treatmentoption"


        Why not?????

        Not looking for nasty or sarcastic comments, not looking to be nasty or sarcastic, but only to have a "real "exchange" of information as you suggest we should have.

        Stephanie
        Last edited by stephanieC; 04-04-2010, 10:38 AM.
        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


        • I agree with Gerbo.
          Why not?
          Let's do everything we can to heal any wounds. Any posts that did not express your sincerely felt love and support of each other could be deleted.
          We all have our better selves that we wish we always expressed.
          I wish I could go back in real life and correct my mistakes as easily.
          God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

          Comment


          • Pat,

            I am happy about your news. How is Jamie doing?

            Cheryl,

            I wish you success at your upcoming visit. If you think of it, please ask Dr. Rivard if he has received any of the news and/or pictures I have sent him. He gave Nicole his e-mail but we have not heard from him since he told her she needed surgery. He and Dr. Dormans know each other and he actually recommended Dr. Betz or Dr. Dormans to do the surgery. I thought he would enjoy seeing the picture of Dr. Dormans and Nicole at her two month post-op visit. Nicole really misses going there and really liked Dr. Rivard.

            Good luck.
            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


            • Originally posted by gerbo
              Also Maria, I have little doubt that Celia will agree that stapling has a place as a treatmentoption. The other side is that some thought need to be given by yourself and others how to respond to a post you do not agree with. As I found out through discussions with Structural, it is possible to be factual and informative, without taking things personally and getting angry.

              Does this alll make sense??
              Yes, it makes sense and that's always how it STARTS out. Something is posted that I, or someone else, feels is either inaccurate or misleading and we INITIALLY respond with facts to dispute it. That is sometimes not received well, and it escalates from there.

              I also am curious about the answer to Stephanie's question. She asked "Why do you say Ceila will never agree that stapling has a place as a treatment option"?

              I read where Celia said she's not "anti-stapling" and while I know it's not her treatment of choice, I 'd like to think she feels that stapling, like other methods, has its place because to say otherwise (that is has NO place) would be absurd.

              If she truly will. as you say, never agree that stapling has a place as a treatment option, then I don't see the debate ending anytime soon. I will only hope it remains civil. But that has to be by ALL parties as I'm sure you'd agree.

              Regards,
              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


              • Wait ....Gerbo,

                did you mean you think she would agree there is a place for stapling as a treatment option or doubt that she would agree that there is a place for stapling as a treatment option??

                Either way.... there is definitely a place for it!!!!

                Anyway, as someone said before and I said I would respect it, this is a spine cor thread. Back to spine cor...which I follow as well because I have another child to research for, so I am often on this thread gaining insight from other moms.


                Stephanie
                Last edited by stephanieC; 04-04-2010, 10:38 AM.
                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


                • OK, Stephanie, now I'm confused - LOL!

                  I did assume Gerbo was saying that Celia would never agree that stapling is an option. That's just how I read it. I guess you did too originally because you said "why not"?

                  But now I'm reading it again and it could be meant either way. Perhaps he did mean he doubts she'd argue with the fact that stapling has a place as an option.

                  Gerbo?

                  Like you said Stephanie, either way it's time to move this thread back to the topic of Spinecor!
                  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


                  • Stephanie, you had me scratching my head when I read your first post (maybe I had too much wine last night) Because my interpretation of Gerbo's post was not what you initially thought, but what you brought up later...i.e. to paraphrase - he thinks Celia would agree that VBS holds a place as a treatment option for some people. I could be wrong, but I think your second interpretation is right.

                    Pat, that sounds like great news! Since I'm new to the board I don't remember your daughter's history (but will search old posts to see). Either case, holding at 6 degrees during a time period of significant growth is AWESOME! How much had she grown since the last appointment?

                    Cheryl, I will be thinking of and praying that you continue to hear good news again.
                    daughter, 12, diagnosed 8/07 with 19T/13L
                    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
                    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
                    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

                    Comment


                    • Thanks, Jill!
                      God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

                      Comment


                      • This is a presentation of the Orthobiom system developed by Dr. Rivard.
                        http://www.mediaprosf.com/vbllc/march12.htm
                        Go down to the presentation by Dr. Rivard. Interesting. I don't know how close to clinical trials he is.
                        I think I understood enought to glean that the system is to be used to control the curve until the child stops growing. He is rather hard to understand. I thought I heard him say that when the curve is large enough before the child finished growing to need fusion, this would be an option to avoid fusion. I plan to ask him more when we go.


                        Melissa,
                        I will make a list so I will remember to ask him if he got your e-mails. Thanks for the warm wishes.
                        Cheryl
                        God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

                        Comment


                        • Hi Cheryl:

                          Thanks for the link to Dr. Rivard's presentation - too cool.

                          I also listened to the presentation by Benoit Sicotte, President & CEO, Biorthex, Inc. He explains some more about the procedure and material to be used. Like Dr. Rivard he says they are ready to go to clinical trials with humans and I think he said they need 132 patients.

                          Ruth
                          Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

                          Comment


                          • from Milesmum (I like that!)

                            I think that every single parent here shares some common bonds. Fear. Fear of their childs future, fear of making the right decisions. Fear of how quickly ( or sometimes how slowly) scoliosis can change. Heartache. That heartache that you feel when your Dr informs you of changes, when you hoped for better. The heartache of the first few times that you tighten the straps on that brace.( or the stages of casting, and cast changes, and even though it it something I am not familiar with--the daily upkeep of a cast which cannot be removed) The heartache that you feel as a parent when another child pokes fun at your child, or when a crass adult in the grocery store asks you questions about "that thing" you have on your child, or "what happened?" to him...
                            Confusion. Confusion about simply finding clothing to suit their situation. Confusion when you and your spouse may disagree on what to do next. Confusion about how protective to be about their physical activities. Stress. Stress with all of the planning and traveling for your idea of the best care, making sure the other children are never feeling put aside, or put upon... managing the "rest" of lifes obligations, as before the diagnoses.
                            Stress when well intended relatives or friends offer advice, input, or their ideas on what should and should not be done.
                            Anger. Anger that we feel when ( even though it ebbs and flows) as we look at our child, sleeping, or playing, and wonder why it had to go this way. Anger that flares when others tell us how it "could be worse" ( which is true..but that is true in just about any situation) regardless of the well meant words Ive heard that "at least its not life threatening"...my retort, if only in my head...is that this is true, but it is QUALITY of life threatening, and impacts families, feelings, futures. Finally...Anger. Anger that we sometimes let fly at spouses, relatives, doctors, friends, ourselves...and maybe even strangers on well meant forums.
                            Ive read over older posts, and rather than focus on the negatives...see that everyone just tries to cope, and make appropriate decisions for their child, hope for the best, and forge ahead with anything new and viable.We all carry the weight of making life altering choices, and thats a darn hard thing to cope with at times. We study and research till all hours of the night, looking for that one thing...that one thing we may have missed that will help. We all want the same thing. We are not (all) medical professionals, certainly not mind readers, but just want to go to sleep knowing we've done all we can for that day, and typically worrying about the next step.
                            Finally, on the upside...I see that while I'd rather not have this happen for my son at all, there has been a added closeness to the family ties. We have learned how to rally together, volunteer, help out, calm down...assist the guy in the wheelchair whose down on his luck, listen more intently to a child whose been through even more trials than us..share, count blessings...and think. I'll imagine that others have seen this happen as well.
                            Everyone here has both a burden and a beautiful thing. I think that regardless of exactly HOW each child has and will be treated, it will shape who they are in a positive way--and it CAN shape us to slow down, be more tolerant, and accepting. Sometimes, in the throes of more worrysome times- we all can be guilty of losing sight of that, but I firmly believe that on this site, other sites and even for those who have yet to find support, the feelings run the same. Again, we all want the same thing...the best outcome for our dear children.
                            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


                            • I choked up while reading Milesmom's post so I can't really remember what I was going to say... I think it was along the lines that we all try to make the best decisions given the information we're presented with. Erica's story is amazing and I think Maria's David is a success as far as I can tell given that he was diagnosed at such a young age and has avoided repeated surgeries for so many years and when I compare this with other children with early onset scoliosis who have repeated growth rod surgeries - there is no comparison! So YES, I do see the successes!

                              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


                              • Mom of Miles,

                                I just got home from a party and read your post and I got so choked up. All of the feelings you described are so right-on. That is why we all need each other so much. Nobody else understands. How can they? I believe, Maria, it was you, who I discussed this with, when we met that time. When people say "It could be worse." "This is our worse."

                                Nicole was supposed to go to a big Bat Mitzvah party tonight. It was going to be her first big outing since surgery. Well, she came home with a 102 fever yesterday. She was so sad and disappointed. Part of me felt so badly that here was one more thing she had to miss out on. Another part of me thought maybe this was meant to be. After all, she would mostly be sitting instead of her usual dancing and playing games all night long. It would have been too dangerous for her to be with a huge crowd of kids potentially bumping into her. So she may have had a miserable time watching everyone and seeing what she can't do right now. This is just another example of feeling sorry for Nicole at times. Thinking it's not fair that she is going through this. Then feeling guilty for feeling so badly when I should be counting my blessings. So you see, I feel all of those feelings you have described. And I feel so blessed to have all of you to share them with. There is no way I could be getting through this without you. Thanks again.
                                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

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