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  • #16
    our experience

    We were thinking of using the spinecor brace on our 18 year old daughter

    (32T36L)(alot of pain on convex curve side)

    sorry, do not have the doctors name, but was told the most we could hope for was a 6* correction after 2 years of wear.

    I just couldn't see the sense of having her wear it for 2 years ...take it off and have NO CHANGE!!! Ugh!! Let alone MAYBE 6*

    We decided against it.

    "skeletally mature spines are not corrected by braces"
    txmarinemom

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    • #17
      Originally posted by mamamax View Post
      Pam, i would like to say that Spinecor has proven the exception to the rule regarding bracing in that it does effect change in the adult mature spine - perhaps not always and perhaps not in every case (just as surgery is not the answer in every case), but certainly more than not for those adults who follow protocol and for those without extenuating circumstances of some kind - there is change, and sometimes the change is impressive. So, there are exceptions to every rule - and this exception is only coming to light over the last five years.
      mamamax, where/what did you read/see that backs up that spinecor can change adult mature spine? I'm interested in looking into the data.
      30 something y.o.

      2003 - T45, L???
      2005 - T50, L31
      bunch of measurements between...

      2011 - T60, L32
      2013 - T68, L?

      Posterior Fusion Sept 2014 -- T3 - L3
      Post - op curve ~35


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      • #18
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        Last edited by mamamax; 04-17-2009, 09:34 PM.

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        • #19
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          Last edited by mamamax; 04-17-2009, 09:34 PM.

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          • #20
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            Last edited by mamamax; 04-17-2009, 09:34 PM.

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            • #21
              The Spinecor doctors are hoping that over the course of two years that the after brace readings will be held in place - out of brace.
              You realize, I’m sure, that this is in direct contradiction to what the SpineCor manufacturer claims. (And also, Scoliosissystems are the folks doing the vestibular testing and rehabilitation which is also in contradiction to the manufacturer). You are hoping for a permanent change in an adult spinal curvature without surgery. Most folks here would say “no way, no how.”

              I have personally seen long held scientific beliefs turned upside down (This shattering realization happened to me deep in the Amazon Jungle – an interesting story in its’ own right). Anyway, I am more inclined to say, instead of “no way, no how”, something more along the lines of “highly unlikely, but good luck”.

              I think Karen did a good job expressing the views held by just about everyone here regarding the topic. And Maxene, you make a darned good point about having a place to share your experience with others who may be trying, or wanting to try, the same thing. Indeed, this is the place for it. But it is important, sort of as a public service, that anyone who comes along or stumbles on this thread in a google search, understand the points that Karen and Pam have raised.

              Thanks for sharing the details about your curves. You achieved more of an inbrace correction than my daughter (not saying much I suppose). Did they give you the x-rays to share with your ortho? It is really interesting to hear of the dramatic height changes. You are 2 ½ inches taller this morning than the day you were fitted with the brace. That’s pretty wild. And the pain relief, well, I would guess that is what most folks would be interested in hearing about. How much, How long, is the discomfort of the brace worth it?

              I was also interested in aterry’s comment about her daughters decrease in height over the past year before diagnosis. In retrospect, I think it should have been a red flag to the pediatrician to further investigate. You never know though, with all the controversy about bracing efficacy, it may have been a blessing in disguise (from your daughter’s viewpoint). Although I am happy to hear that it was the first, not the second, ortho guy who said it couldn’t be related to scoliosis (hoping you stuck with the second).

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              • #22
                Concerned Dad,

                Thanks for your musing on the height change issue. At the time of the measurement at the pediatrician's office I was puzzled as to why the doctor just wrote it off as a mistake. If I'd been as aware of scoliosis as I wish I'd been, I would have brought that up immediately--because as is mentioned in many, many postings, a curve changes height--I mean, isn't this basic math? And I was even more puzzled as to why the first ortho just pooh-poohed it. That and a bunch of other things caused us to seek the second opinion. For instance, the first ortho more-or-less said that scoliosis under 26 degrees is a cosmetic matter. I was shocked.

                I understand your point that not knowing what was going on defaulted us away from bracing and maybe in the long run that's for the best but if I'd known (and I think I should have) I definitely would have pushed for a brace. I'm basing that on what I've read and learned, so far. Maybe a year or two from now I'll feel differently.

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                • #23
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                  Last edited by mamamax; 04-17-2009, 09:34 PM.

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                  • #24
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                    Last edited by mamamax; 04-17-2009, 09:35 PM.

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                    • #25
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                      Last edited by mamamax; 04-17-2009, 09:35 PM.

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                      • #26
                        Originally posted by mamamax View Post
                        Pam - I think we can bring this difference of opinion to a close. Tried to privately message you but your box is full. I do not want to use this thread to argue about our difference in opinion.

                        Obviously we've both done our own research and we disagree. The truth for me is obvious through my own personal experience, and the experience i've so far shared with others. Sorry, but that is weighing heavier than your insistent opinion (in large bold signature form).
                        If not to debate, for what purpose did you start this thread?

                        You arrived like a meek little lamb, seeking advice, and now you are telling everyone what you know as fact - after 4 days in-brace. Suspicious, but it happens here quite a bit.

                        I made sure you couldn't PM me again after the first time you did (because it varied 180° from what you posted to me for the masses -2 days after your original post here). I have no interest in speaking privately with a shill.

                        You claimed you were 4 days into the brace when you posted here for the first time. How is it you know so much now? You KNOW Spinecor corrects an adult curve after 4 days in-brace? Phenomenal.

                        And get OVER my sig. You've pontificated on it enough. Surely you have larger issues.

                        I repeat ... NO brace will permanently correct a skeletally mature curve. I DID say it's great if you're getting pain relief. That's all you can expect.

                        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


                        • #27
                          Cross-posting to catch a new audience?

                          This woman's second post (after a first unanswered one) assured us she "wasn't a plant". What an odd angle to take 2 days after your original post (http://scoliosis.org/forum/showpost....31&postcount=2)

                          Then here, she starts a new thread:

                          http://scoliosis.org/forum/showpost....46&postcount=5

                          Thanks for cross-posting, maramax, and getting your digs in other places outside THIS thread and my PM (until I shut off your ability to send me any more messages).

                          Originally posted by mamamax View Post
                          Will let you know as soon as i find out - you know how insurance companies can be. Yes - well for me anyway .. the expense just for the pain relief alone is well justified.

                          Some do seem to express some rather negative viewpoints regarding adult use of this brace ... guess that is largely due to the fact that most people have trouble dealing with any kind of change - or things that shake their stable data. I don't mind being challenged in a friendly way - in fact that kind of exchange can make for some enjoyable enlightenment. But when folks get accusatory and mean, that's a whole different thing.

                          Spinecor for adults is new - and it will have to go through a shake down cruise. Next year this time things may be different.

                          Did you realize the current vice president and CEO of the National Scoliosis Foundation (which provides this forum) has three children using the Spinecor brace. That is HUGE. He has been quoted as saying that the brace - "does what it is supposed to do". http://www.spinecorbrace.biz/

                          What do you think of that?
                          I think - even more so now - you're not quite being honest.

                          Get a poor response in one thread, jump to another area , start a new one with thinly veiled hostility - and a LOT of sucking up to NSF, the McLeans article few believed when it came out, and Joe O'Brien's public prop IN THAT ARTICLE for Spinecor (for his KIDS)?

                          You're becoming very NON-credible, mamamax. Ummmm ... kind of like (as I've said) a shill.

                          4 days in the brace, she's said. Whether you appreciate my personality or not, please show some common sense, folks. These people do drive-bys here all the time ...
                          Last edited by txmarinemom; 04-16-2009, 02:08 AM. Reason: left something out ...
                          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
                            Mamamax:

                            1. Do you or any family member have any financial interest in any product or company you posted about?

                            2. Do you know the difference between evidence and faith? You are short on the former and long on the latter. Medicine requires evidence. Faith won't and can't cut it.
                            Last edited by Pooka1; 04-16-2009, 06:21 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."

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                            • #29
                              ..........
                              Last edited by mamamax; 04-17-2009, 09:36 PM.

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                              • #30
                                Originally posted by Pooka1 View Post
                                Mamamax:

                                1. Do you or any family member have any financial interest in any product or company you posted about?

                                2. Do you know the difference between evidence and faith? You are short on the former and long on the latter. Medicine requires evidence. Faith won't and can't cut it.
                                Hi Pooka1 .. a fair question #1 yours. For the record - No, neither myself, any family member, any friend and/or acquaintance - or taking it a bit further, any one i correspond/communicate with regarding the Spinecor brace (outside of my brace provider, the brace maker, and brace inventors) - has any vested financial interest (past, current or proposed future) in the product - to the very best of my knowledge (someone may have invested in stock, if it exists but if so - i am unaware of this).

                                In answer to question #2 - I think i know the difference between evidence and faith - and like many who have managed to live into their sixth decade, have seen an interesting number of exceptions to the rule in either case. You know me well enough to label me a short on the former and long on the latter? How odd. Those who truly know me would say different. There are of course, you must know - those who would argue with you about the Faith thing. Interesting thoughts - thank you and hope i have answered your questions to your satisfaction.
                                Last edited by mamamax; 04-16-2009, 08:54 AM.

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