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  • #91
    Sharon - From your lips (well keyboard) to God's ears. If only it were that easy

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    • #92
      Originally posted by mamamax View Post
      Sharon - From your lips (well keyboard) to God's ears. If only it were that easy
      <quiverling lower lip> But... but... but... God can do anything, can't he? <quivering lower lip>

      Seriously, please ask your othopedic surgeon specifically about the state of your spine bones (arthritis, osteoporosis, etc.) and your surgical window in case you need to consider that. Some of the saddest cases here are people who realized too late that they needed surgery but can't have it because they waited too long.
      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


      • #93
        I'm with you Sharon. Do not give up on Faith - hard, i know. For certain we are in this boat together - whether we are scoliosis patients - or parents, friends, or loved ones of patients .. it's an emotional and physical life long challenge. Faith is hard to hold on to, but Faith will see us through.

        I will discuss these things you mentioned with my Ortho (who will be working closely with my brace provider) - promise, and thank you for your sincere concern. I remember once seeing an Ortho in Missouri, in the waiting room with me was a 90 year old woman with a severe case of scoliosis - untreated .. she came in periodically for pain management. She had more energy and zest for life than myself. A little crooked, but thriving. The grandest exception to the rule. Asked her how she faired so well - she told me it was her Faith. I never forgot that. There is something to it, albeit the finite definition of it and all that it may imply, escapes us all.

        Comment


        • #94
          You know, with respect to some of these older patients, I think they made the right decision not to have surgery back in the day when the techniques and hardware weren't up to snuff. I think they are arguably better off not having had surgery than the surgery that was available then. And I'm talking prior to circa 1970s.

          But today, the hardware is such that it can cure certain folks. For example, my daughter is though to be back in the general population on all future back issues and is not expected to need any more surgery in her life.

          It's night and day.

          While it's hard to make a decision in many cases that really represent a choice, in some cases there really is no choice. My husband and I can't be said to have been brave sending my daughter into surgery because we really had no choice in the matter. She had a curve that was moving at ~5* a month and would be dead or crippled by now absent her fusion. No choice.

          I'm glad you still have some choice.

          Again, good luck.
          Last edited by Pooka1; 04-18-2009, 09:09 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


          • #95
            Agree with you Sharon - certainly seemed to be the case in the Missouri lady's case .. my parents agreed with you also, which is why there was no surgery in adolescence. A beautiful story about your daughter - a blessing, really. Say what you will - i think you and your husband were brave. Do i have choice Sharon? I don't know. Even with the latest greatest technology - two major surgeries and a very very strong possibility of a third. No way do i have that kind of time to take off from work - or resources for the 24/7 home care recovery. Lord, not to mention the opportunity for something to go wrong - not one opportunity but most likely three. Have also been told that following all these surgeries that i should prepare to go on disability .. not something again, that can be done at this point in my life. Yet, here i am with a 59 year old body telling me very definitely something must be done or face a debilitating older age. I'm not afraid of surgery - broke my neck in a severe car accident in my early 20's .. fusion 4/5 (a whole interesting story i will spare you). Bracing proving the most logical option, for me, at this time. Hope it works and wouldn't even mind relying upon it now and then after the initial two year treatment. Lots to consider - fear not being the modus operandi Two years should not close my window. Still marveling at your daughter's surgery - and think it took bravery on your part (and your husband) to get through it - have a daughter myself, if anything ever happened to her - well, they would just have to sign me up at the nearest nut house. Thank you for the wishes for good luck - always needed (and appreciated), whatever the case.
            Last edited by mamamax; 04-18-2009, 10:48 PM.

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            • #96
              Bracie gets a baptismal bath ...

              In the continuing sharing of the Spinecore brace (adult use) .. the manufacturer recommends weekly washing and it is published that machine washing (delicate cycle) is fine, as well as hand washing. Toss in dryer - medium heat. ok ... got to tell ya this made me a little nervous. I've never spent so much money for a garment so, hand washing in Woolite became the choice. Also chose to let it drip dry as i had a concern about repetitive dryer use and its overall effect on the elastic bands - again, because this brace is such an expense in my world [out of network insurance covering only 60%] - want it to last as long as possible. Worked very well. Drip/Air drying takes about 10 hours .. downside (were i a wealthy woman .. would have purchased two). Brace provider had marked certain snap locations with a waterproof pen (very important to make sure your provider is using one so the identification will not disappear on first washing). So that's about it for the topic of Spinecor brace bath (for other new users or those just seeking information). Over in the Adolescent forum, one of the girls had named her Spinecor brace - found that cute and whimsical ... so - i've named/blessed mine - Bracie
              Last edited by mamamax; 04-19-2009, 11:23 AM. Reason: Edited for typo correction

              Comment


              • #97
                mamamax,
                Why two posts with so much repetition?
                Diagnosed with severe lumbar scoliosis at age 65.
                Posterior Fusion L2-S1 on 12/4/2007. age 67
                Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
                Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
                New England Baptist Hospital, Boston, MA
                Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

                "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

                Comment


                • #98
                  Hi lovestoskate, the answer is a little embarrassing really ... sometimes i'm a little technically challenged

                  When i first joined the forum i began the thread #1 Spinecor brace 59 year old (starting date 4/10/09). Was not getting any response so i thought there was something wrong with my presentation - decided to change the thread title to Spinecor Adult Users and discovered thread titles cannot be changed (or if so, i still don't know how).

                  So i opened another thread (#2) with the desired title: Spinecor Adult Users (4/11/09) ... thinking i could just delete the empty (at that time) thread #1. And discovered such cannot be done.

                  So, that is why there are two threads.

                  As for double postings - as both threads have become active, i do this anytime i have what i think may be significant information for those seeking information on the Spinecor brace (adult use).

                  Would really like to close thread #1 and just focus on thread #2 which is more active ... but that is also beyond my control (so far as i know)

                  Comment


                  • #99
                    Originally posted by loves to skate View Post
                    mamamax,
                    Why two posts with so much repetition?
                    Sally, read the original posts she made (the .pdf files I created before she blew away everything) and it will be a bit more clear ...

                    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


                    • Dear Joe and fellow members:

                      As stated by an observant fellow member of this forum: Never a dull moment around here.

                      Folks, i have to state my opinion of my experience thus far here has led me to believe there is possibly an attempt to run off the Spinecor adult member (myself)who joined to share her experience with others in a forum established by the NSF for scoliosis patients and their families.

                      Lots of name calling, false accusations and attempts to discredit everything i have had to say, and even moderator support of that (post #37) of it - referenced posts below.

                      At one point, i am not proud to say - i did sink to a level of conversation i seldom do in order to defend myself. That shook me to the bone (not accustomed to communicating in a hostile environment, that is a fact), and if i could have - i would have deleted all of my posts and left (explanation of why there are two threads found in Post #98, this thread). I did attempt to remove my postings as evidenced, that my words could not be further used against me by said few, yet powerful - offenders. Something i later regret in hindsight, but like i said ... it has been difficult to remain here amid the name calling, attempts to discredit me and false accusations made by a few with the apparent agenda of running me off. Do have in fact a private email from another member who shall remain anonymous - supporting just that - and stating that said member had seen this happen before with adult spinecor members attempting to share their experience.

                      Attempting to remain here has been an emotional challenge, i have asked the president of NSF (Joseph O'Brien) to close both threads. He has encouraged me to keep posting and said that he will review the situation at his earliest convenience sometime this week. Have taken his advise, and had some wonderful exchanges with others outside the few who are in the minority and appear to have the purpose of running me off through repeated name calling, attempts to discredit me, and false accusations. Joe, it has been your wise advice, and the encouragement of other members outside the apparent group on a mission to run me off - that keeps me here.

                      And that about sums up the whole story in regards to that - i'm just another scoliosis patient here - sharing my story (difficult as that has been at times to do) - no more, no less.

                      To the majority of members posting to my threads - thank you for your meaningful sharing in a friendly and supportive way, and for even sometimes, gently challenging me to think outside the box ... you have been a delight and illustrate the true purpose of this forum.

                      ____________
                      References to name calling, attempts to discredit me, and false accusations (this thread):

                      Posts:
                      2-9-12-16-26-27-37-38-57-59-61-64-65-68-82-99
                      Last edited by mamamax; 04-21-2009, 05:01 AM. Reason: Edited for typo

                      Comment


                      • Here's the problem

                        mamamax,

                        The experience of a 59 year old woman trying spinecor is a valuable addition to the forum in my opinion. If it can relieve your pain long term, that is good to know and may encourgae others similarly situated to try Spinecor.

                        It is also okay to say you hope it will correct some of your curvature.

                        The problem comes in when you cite pseudoscientific, discredited sources for claims that are known to be contrary to biology. It isn't a matter of the jury is out. The jury is in and we know WHY adult spines can't be changed through any means other than surgery. No amount of holding your spine in a straighter alignment as with Spinecor will change the shape of the vertebra. And bracing takes over for muscle so you will be losing muscle, not building it, with any brace.

                        The above isn't conjecture based on scanty evidence. It is a known medical finding. There is a complete lack of credible evidence that a mature spine can be straighened by anything except surgery. Schroth has had ~90 years to show it and has failed. Nobody has succeeded yet. Can we say they never will succeed? Probably not. But we can say that TOIDAY, there is not one credible iota of evidence for it.

                        Let's take another counterfactual position... young earth creationism. Now this is so counterfactual as to be ILLEGAL to teach in public school science classrooms. When young earth creationsists on school boards try to jam this counterfactual dogma down the throats of innocent kids, they get sued and the innocent tax payer loses millions.

                        Here, you only have people explaining why you are wrong about the science. Now isn't that better than getting sued and losing millions?
                        Last edited by Pooka1; 04-20-2009, 06:25 AM.
                        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


                        • On my way to work Pooka1 - will reply later. Do note that categorizing me with young earth creationsists - is - interesting

                          Comment


                          • Originally posted by mamamax View Post
                            On my way to work Pooka1 - will reply later. Do note that categorizing me with young earth creationsists - is - interesting

                            Are you a young earth creationist?

                            You can admit that here because others have (incredibly).

                            Any counterfactual position will work in this context... young earth creationism, astrology, alchemy, Repubican, etc.
                            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


                            • Seriously Mamamax, I don't think you need to fret so much. There really doesn't appear to be anyone here who is trying to run you off, just people with a lot of experience with scoliosis who want to try to help others by making sure that the facts about alternative methods and bracing (not just Spinecor) are made clear. They do the same for surgery, so it all balances out. It's exciting that you've heard that the Spinecor might help you to permanently straighten your spine, but there isn't any scientific evidence that this can happen - YET. Maybe this will change, it would be fantastic if it does! But at the moment, sadly this evidence doesn't exist.

                              I think, if you know a bunch of people who are seeing actual permanent correction of their adult scoliosis by using the Spinecor, you should all get together and contact Spinecor themselves so they can run clinical trials. If they could do that, and then publish proof that this works, it would be absolutely wonderful news for all of us.

                              I'm sure you'll understand that this forum and others like it do quite often get people who try to tout unproven cures for scoliosis, so it's natural for people to be sceptical and ask questions, that's all It really doesn't read as though anyone has anything personal against you, so please don't worry.

                              Toni xx
                              Last edited by tonibunny; 04-20-2009, 07:41 AM.

                              Comment


                              • I would like to hear more from you mamamax. I have an appointment for my daughter with Dr Deutchman but am thinking of cancelling it. It's all just very confusing. But the more people we here from the better informed we'll all be. I'm thinking of the doctor (can't remember his name) who discovered the bacterium that causes stomach ulcers. The entire profession wrote him off as a kook until he proved his hypothesis. Someday--how long? who knows? someone will make progress through scoliosis research. From what I've read on this forum there seems to have been little progress. Just some technical improvements in surgery; some technical improvement in bracing; some promise with the stapling; not much, if any, prevention; and nothing in any area that could be called a breakthrough. But I think we all need hope so I want to hear as much as I can.

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