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  • #61
    i didnt realize a spokesperson had been appointed...i have plenty of my own private messages stating otherwise!

    truth is truth...i feel badly for parents who put their faith and hope in those who are unable to be open and honest about what their treatments can and cannot accomplish...i guess if you really want to believe, you can believe anything...but only long term studies can prove any treatment works! asking questions is NOT discrediting...

    jess
    Last edited by jrnyc; 07-15-2010, 08:45 PM.

    Comment


    • #62
      Originally posted by jrnyc View Post
      hi Chris
      Sharon, i thank you for sharing your knowledge...and also for sharing the experience you have had with your daughters' treatments and surgeries! you have repeatedly demonstrated how much about the spine and scoli that you've researched, learned and gone through personally...and i know how good your intentions are...
      not everyone will appreciate it...but i certainly do!

      jess
      I appreciate it as well, Jess. Regardless of how some folks may interpret Sharon's posts, her heart is ALWAYS in the right place, trying to make sure that folks are going in with eyes wide open, knowing the facts.

      There are, unfortunately, a lot of people out there trying to make a buck off of desperate parents - and if you read Pooka's posts, she is always looking out for patient and parents alike - and I respect her for asking those who are touting unproven cures to show us the facts!
      Last edited by mariaf; 07-15-2010, 09:12 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
        Of the three different scoliosis specialists that we have seen in the past year, not one of them suggested bracing.....even when my daughter's curves were initially only 21T & 36L. The first two doctors suggested a wait and see course of action. It was only after we were able to document how quickly our daughter's curves were progressing (roughly 5 degrees per month) that surgery was scheduled. This is what was causing her pain. Her muscles couldn't keep up with the curves progression.

        If our school district had performed scoliosis screenings we might have caught this when there might have been a chance for a brace to at least slow the progression. But, considering that my daughter has had her period for over 2 years now and has a Riser of 4/5 most specialists would tell you that her curves shouldn't be progressing at such a quick pace. Yet, they are.

        Considering how aggressive her scoliosis has been I doubt that a brace would have done much to help in our situation.
        Mother to 14 yo Cheyenne. Surgery 8/23/10 Shriners, SLC.

        Comment


        • #64
          Sorry to start so much controversy!

          As I said before, I realize that you all are trying to help me. I'll be honest, I don't like reading arguments between two people. I haven't wanted to turn my computer on for a few days because I'm afraid I started some sort of trouble here. I do like hearing the different stories out there about each of your experiences. For example:
          AILEA: This story was just that...someone sharing what their daughter went through. She wasn't trying to convince me to do one thing over another. She was just sharing her story. Thank you for doing that. I loved seeing that your daughter is 18 and doing well. You said it perfectly when you wrote that maybe her curve will stay the same, but maybe it won't. None of us can predict the future for these kids. I realize that. I like to know the facts behind decisions that were made. They made their decision and they seem happy with it. She's not telling me what to do though. I guess I just need to hear experiences right now. I want to hear surgical and non-surgical experiences so I can understand how parents come to make their decisions. Ultimately, I will have to make a decision that I feel will be best for my child's situation. I know I will upset some people by choosing an alternative method and I know I will upset some parents by choosing the surgery. I still don't feel any closer to making any kind of decision for now. I just want to know your stories if that's ok. I don't know if I'm making any sense or if you understand what I mean by that. I just don't want people arguing over what I should do. I'm not jumping into anything too quickly especially after all this controversy! I really have alot to think about! Thanks again everybody! Thank you AILEA for sharing your story with me. You seem to have made peace with your decision and I liked seeing that! Good luck to you and your daughter!
          Chris

          Comment


          • #65
            Originally posted by jrnyc View Post
            i didnt realize a spokesperson had been appointed...i have plenty of my own private messages stating otherwise!

            truth is truth...i feel badly for parents who put their faith and hope in those who are unable to be open and honest about what their treatments can and cannot accomplish...i guess if you really want to believe, you can believe anything...but only long term studies can prove any treatment works! asking questions is NOT discrediting...

            jess
            and if long term studies does not exists for what we think that can works, what should to do jess? We should to believe in your great knowledge? Well, I hear you. Tell me what could works or not for you, but stop to repeat your beliefs and give me scientific and rational explanations.

            Comment


            • #66
              is incredible that people managing this forum allow this kind of discussion in all non surgical threads whose focus is ever lost in this way.
              This eternal discussion should to be encapsulated in an unique thread. Why they don't do that? It's really STRANGE!

              Comment


              • #67
                When your kid is being treated for scoliosis with bracing and PT, then 6 months later the out of brace images show an 8 degree correction, can't that be shared without all the hub-bub. I don't have numerous blind studies to say bracing works, only our personal experience and images measured 10 times over by several different professionals involved in my kid's treatment to say, this is what we did and this is where we are. No faith or hope needed. The facts are what they are in our case so far. I'm not advocating one treatment over another. If someone is curious as to where we started and what we did to make decisions in our case, I would love to share anything I can. If seeing is believing, in my case, I'm a believer up until now. I can't say what is right or wrong, only we did this because....and this is what happened along the way with doctors, orthotists, insurance companies, etc.. I am not going to tell someone that statistically speaking, what you are doing won't work. We all have/had tough decisions to make along the way. Don't worry about raising someone's ire Chris. Ask anything you want from anyone here willing to offer their experience and support. As much as I may harp about Sharon beating a dead dog, she is well read and has valuable information to offer. We can agree to not agree. It's not easy starting on this whole journey, just keep collecting as much information as you can. Good luck

                Comment


                • #68
                  Originally posted by Gryffindor View Post
                  Of the three different scoliosis specialists that we have seen in the past year, not one of them suggested bracing.....even when my daughter's curves were initially only 21T & 36L. The first two doctors suggested a wait and see course of action. It was only after we were able to document how quickly our daughter's curves were progressing (roughly 5 degrees per month) that surgery was scheduled. This is what was causing her pain. Her muscles couldn't keep up with the curves progression.
                  This is very similar to my one daughter whose curve moved 5* for the entire observation period up to surgery. She had muscle pain towards the end presumably because of the fast pace but maybe also due to extreme rotation. Two surgeons decided not to try bracing with her. I think they have some experience with fast curves and I'm guessing it is that bracing fails in these cases so they spare the kids. This is to their great credit given bracing is the standard of care for curves in that range (despite having no good evidence they work).

                  The other kid had a start and stop progression pattern but never broke about 3*-4* per month when it was moving as I recall.
                  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


                  • #69
                    Originally posted by flerc View Post
                    is incredible that people managing this forum allow this kind of discussion in all non surgical threads whose focus is ever lost in this way.
                    This eternal discussion should to be encapsulated in an unique thread. Why they don't do that? It's really STRANGE!
                    If science doesn't have the answer then nothing does. Science is the only game in town.

                    Some people don't like that and won't accept it. There are reasons for that.
                    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


                    • #70
                      Originally posted by mariaf View Post
                      I appreciate it as well, Jess. Regardless of how some folks may interpret Sharon's posts, her heart is ALWAYS in the right place, trying to make sure that folks are going in with eyes wide open, knowing the facts.

                      There are, unfortunately, a lot of people out there trying to make a buck off of desperate parents - and if you read Pooka's posts, she is always looking out for patient and parents alike - and I respect her for asking those who are touting unproven cures to show us the facts!
                      Thanks Maria. I would say the same about you.

                      I know it's hard to maintain appropriate skepticism in the face of the potential you or your child needs surgery. Spinal surgery is an inherently scary proposition for good reason although the actual as opposed to perceived risk at present, if known to these folks, might obviate some fear.

                      Because of this, I think Scoliosis will always be a lucrative area for the charlatans unfortunately. Most people are not trained in the importance of asking for evidence nor do they necessarily have the skills to evaluate it. This, combined with situations like surgeons largely not offering a perceived good option like Spinecor drives even more innocent unwitting people away from legitimate medical help and into the pocketbooks of chiros who of course have no relevant training whatsoever in scoliosis. When you have a situation where honest chiros admit chiros shouldn't be treating scoliosis, then the game should be over. Unfortunately, hope springs eternal. If skepticism sprang eternal we wouldn't be discussing any of this.
                      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


                      • #71
                        No where in the guidelines to this forum does it say only scientifically proven information can be posted. I understand about charlatans taking advantage, but this is not a "just the facts, m'am" forum. There can be discussion and sharing of people's personal experiences. There are ways to "discuss" differences without attacking the people with whom you don't agree. This is what it says about posting things in the forum, listed in the FAQs area:

                        The bulletin board as a whole contains various categories (broad subject areas), which themselves contain forums (more specific subject areas) which contain threads (conversations on a topic) which are made up of individual posts (where a user writes something).

                        Note that I highlighted the word "conversations." It does not say "where scientifically documented information is presented."
                        71 and plugging along... but having some problems
                        2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                        5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                        Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

                        Corrected to 15°
                        CMT (type 2) DX in 2014, progressing
                        10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

                        Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

                        Comment


                        • #72
                          Originally posted by Chris43 View Post
                          As I said before, I realize that you all are trying to help me. I'll be honest, I don't like reading arguments between two people. I haven't wanted to turn my computer on for a few days because I'm afraid I started some sort of trouble here. I do like hearing the different stories out there about each of your experiences. For example:
                          AILEA: This story was just that...someone sharing what their daughter went through. She wasn't trying to convince me to do one thing over another. She was just sharing her story. Thank you for doing that. I loved seeing that your daughter is 18 and doing well. You said it perfectly when you wrote that maybe her curve will stay the same, but maybe it won't. None of us can predict the future for these kids. I realize that. I like to know the facts behind decisions that were made. They made their decision and they seem happy with it. She's not telling me what to do though. I guess I just need to hear experiences right now. I want to hear surgical and non-surgical experiences so I can understand how parents come to make their decisions. Ultimately, I will have to make a decision that I feel will be best for my child's situation. I know I will upset some people by choosing an alternative method and I know I will upset some parents by choosing the surgery. I still don't feel any closer to making any kind of decision for now. I just want to know your stories if that's ok. I don't know if I'm making any sense or if you understand what I mean by that. I just don't want people arguing over what I should do. I'm not jumping into anything too quickly especially after all this controversy! I really have alot to think about! Thanks again everybody! Thank you AILEA for sharing your story with me. You seem to have made peace with your decision and I liked seeing that! Good luck to you and your daughter!
                          Chris
                          Hi Chris

                          Sorry you have to be greeted on the forum in this manner but it's not anything that you said. This is a problem that involves a single person and has been like this for several years. This forum USED to be very friendly and supportive where you could actually come and discuss your treatments (good or bad). We were free to exchange information so that others would benefit from our personal experience. It's not so now. Everything has to be run to the ground a hundred times over.

                          You can find a lot of good information through the search engine on here and of course, you can send PM to anyone who has something of value to share with you.

                          Good luck!

                          Comment


                          • #73
                            Originally posted by Pooka1 View Post
                            If science doesn't have the answer then nothing does. Science is the only game in town.

                            Some people don't like that and won't accept it. There are reasons for that.
                            As a President of my country said time ago 'Reality is the only truth'. Regardless we can understand or demostrate it.
                            Some people don't like that and won't accept it. There would be reasons for that.
                            But those reasons don't allow them to play the game they are playing here. It's really SHAMEFUL!!

                            Comment


                            • #74
                              Originally posted by Susie*Bee View Post
                              No where in the guidelines to this forum does it say only scientifically proven information can be posted. I understand about charlatans taking advantage, but this is not a "just the facts, m'am" forum. There can be discussion and sharing of people's personal experiences. There are ways to "discuss" differences without attacking the people with whom you don't agree. This is what it says about posting things in the forum, listed in the FAQs area:

                              The bulletin board as a whole contains various categories (broad subject areas), which themselves contain forums (more specific subject areas) which contain threads (conversations on a topic) which are made up of individual posts (where a user writes something).

                              Note that I highlighted the word "conversations." It does not say "where scientifically documented information is presented."
                              Hi Susie

                              I guess us "lay people" (as I've seen Sharon refer to us) are not intelligent enough to make decisions for ourselves or our loved ones. We should have a separate thread called "ASK THE SCIENTIST" where we can direct all our important life questions.

                              Seriously, you are absolutely right and I hope things can change so we can freely share information again. I've had PM's where people are actually AFRAID to post because of the backlash that will ensue.

                              Comment


                              • #75
                                Originally posted by Sherie View Post
                                Hi Susie

                                I guess us "lay people" (as I've seen Sharon refer to us) are not intelligent enough to make decisions for ourselves or our loved ones. We should have a separate thread called "ASK THE SCIENTIST" where we can direct all our important life questions.

                                Seriously, you are absolutely right and I hope things can change so we can freely share information again. I've had PM's where people are actually AFRAID to post because of the backlash that will ensue.
                                I also recived this sort of PM's. Obviously the purpose of some people here is to make impossible to share 'alternative' information without being inmerse in an agressive and steril debate (must hearing the some arguments, dozens, hundreds, thousands of times), wasting a lot of time that this people seems to have without limits. Why are not those arguments encapsulated in an unique thread and only references to this thread are allowed?
                                It's really strange that managers of this forum don't see that as a problem. They could solve it in simple way.

                                Comment

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