Page 3 of 19 FirstFirst 1234513 ... LastLast
Results 31 to 45 of 285

Thread: Setting the Record Straight

  1. #31
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by mamamax View Post
    Dear NMFB - Welcome to the National Scoliosis Foundation Forum. Perhaps many here would like to better understand why you would join, and make this your first posting.
    I don't think there is anything odd about NMFB's posting. These are his/her thoughts. I'm sure if we looked at everyone's FIRST posting, and tried to analyze it, I'm sure we could come up with all sorts of questions.

    Please try not to be so defensive anytime someone questions the use of Spinecor for adult use. That could cause folks to wonder why YOU post that way, no? I'm not trying to attack you or anything, so please don't interpret it that way - I'm just stating that I don't think there is anything unusual about NMFB's post - his recommendations make perfect sense to me - and I honestly don't think it's fair that because someone has different thoughts than you do (on Spinecor for adults) they have to explain why they included those thoughts in their first post. Would it be different if it was his third or fourth post?

    NMFB is basically telling folks to do their research with respect to Spinecor for adult use, to read every article and posting they can find, and to THINK before they rush into anything.

    What's odd about that?
    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/

  2. #32
    Join Date
    Apr 2009
    Posts
    1,258
    Quote Originally Posted by concerned dad View Post
    I love this post! Very mysterious, got me thinking.
    The problem is, well, I think I read every paper I could find (and I looked hard) on the spinecor. So I'm not sure what I missed. No idea what you may be alluding to.
    Regarding the country of invention and manufacture. I guess the relevance of that escapes me.
    WRT the two trips, well, for adult use, it seems you might be able to tell right off the bat if pain is reduced, for kids, I think it would be good to look at the inbrace xrays before buying.

    But, I guess we're going to need more details. Just what are you saying?

    Agree with you CD - i too would like more details.

  3. #33
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by mariaf View Post
    I don't think there is anything odd about NMFB's posting. These are his/her thoughts. I'm sure if we looked at everyone's FIRST posting, and tried to analyze it, I'm sure we could come up with all sorts of questions.

    Please try not to be so defensive anytime someone questions the use of Spinecor for adult use. That could cause folks to wonder why YOU post that way, no? I'm not trying to attack you or anything, so please don't interpret it that way - I'm just stating that I don't think there is anything unusual about NMFB's post - his recommendations make perfect sense to me - and I honestly don't think it's fair that because someone has different thoughts than you do (on Spinecor for adults) they have to explain why they included those thoughts in their first post. Would it be different if it was his third or fourth post?

    NMFB is basically telling folks to do their research with respect to Spinecor for adult use, to read every article and posting they can find, and to THINK before they rush into anything.

    What's odd about that?
    I agree there is nothing nefarious about the post.

    It's interesting how some folks become wary of other folks who advise doing research before jumping into a treatment.

    Is there a term for fear of research or fear of factual material? If not there should be.
    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."

  4. #34
    Join Date
    Dec 2008
    Posts
    494
    Maybe not nefarious, but certainly mysterious.

    I second mamamax's question:

    What was your personal experience, that moves you to make these comments?
    Seriously, I get the feeling from this post and other comments that there is something about the SpineCor that we dont know about. It's like no one wants to go on record saying something concrete.

    I heard (and dont wish to reveal the source so take it with whatever grain of salt you wish) that some doctors on the west coast tried it, had poor results, and are currently sitting on the data instead of publishing it (and this relates to AIS use, not adult use). Dr Dolan on the other forum made a passing comment about it also. Linda has made some vague comments (perhaps I've read to much between the lines), Joe Obrien stopped his involvement for some reason (probably none of our business but still, it makes one wonder, no?). US Doctors tried it and mostly stopped. I dunno, it just seems mysterious. This poster adds comments about the relevance of where it was invented and manufactured. I feel like I am missing something. (missing more than my $3500 )
    Last edited by concerned dad; 05-09-2009 at 09:58 AM.

  5. #35
    Join Date
    Apr 2009
    Posts
    1,258
    Agree with you CD - mysterious. Thinking: if one is brave enough to become a member and make such a first posting .. that the rest of the story should be told.

    Like you - i have searched in depth regarding this treatment before beginning it and i continue to do so. In my searching - came across a west coast chiropractor (who shall remain nameless), who on his website - puts the Spinecor brace in the same category as the Copes and Boston braces. Naturally, i wrote to inquire about this. Said provider says - he has had one patient (i.e. he only treated one)who did not respond to treatment, said provider was trained by Spincor, and this provider says the brace does not address the entire spine (i.e., cervical and lumbar regions). Said provider/chiropractor says he displays said brace on his wall (there's a picture).

    I have questioned: did said patient follow protocol, were there extenuating circumstances that would prevent treatment .. have not yet received an answer. Curious this. Now - personally, i can feel the affect on cervical and lumbar sections of my spine. My provider (recommended by my orthopedic specialist) was trained by Rivard and Colliard (feeling very good about that), incorporates Schroth exercises and makes frequent trips to the clinic in Germany to stay abreast of current treatments there (feeling ever better about all that). Also, my provider's practice, has treated over 1,000 adults. And i am following protocol. Also - have a private message off forum from a fellow patient who shares the same provider (and who also receives regular chiropractic treatments) .. she said that that after 4 days in-brace her chiropractor was astounded at the good shape of her spine (she has not told him of her treatment yet) .. so, interesting. I have never seen a study (and i search for studies) that claims the Spinecor brace does not address the entire spine. Maybe our new member will share more details. Personally - i'm not as concerned about the cost of any treatment, as i am about results.
    Last edited by mamamax; 05-09-2009 at 11:18 AM.

  6. #36
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by concerned dad View Post
    Maybe not nefarious, but certainly mysterious.

    I second mamamax's question:



    Seriously, I get the feeling from this post and other comments that there is something about the SpineCor that we dont know about. It's like no one wants to go on record saying something concrete.

    I heard (and dont wish to reveal the source so take it with whatever grain of salt you wish) that some doctors on the west coast tried it, had poor results, and are currently sitting on the data instead of publishing it (and this relates to AIS use, not adult use). Dr Dolan on the other forum made a passing comment about it also. Linda has made some vague comments (perhaps I've read to much between the lines), Joe Obrien stopped his involvement for some reason (probably none of our business but still, it makes one wonder, no?). US Doctors tried it and mostly stopped. I dunno, it just seems mysterious. This poster adds comments about the relevance of where it was invented and manufactured. I feel like I am missing something. (missing more than my $3500 )
    There is a feeling in some sectors of orthopedics that the published results on Spinecor are not necessarily as detached and dispassionate as they should be for research. In other words, they are not believed because the only articles that purport to show the brace works are from the designers and(or) manufacturers. The fact that there is a study out there done by a group with no financial stake in Spinecor which showed it was a failure is consistent with this thought.

    Not saying one study is dispositive but I am saying it is interesting that the one group with no dog in the fight had radically different results. Now I think there is some issue with different methodologies (always the first thought when aberrant results are published) but it's interesting nonetheless. I have read the Spinecor response to the article but I don't have enough information to know if they laid a glove on the paper.
    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."

  7. #37
    Join Date
    Mar 2009
    Posts
    1,090
    For what it's worth, I'll just throw my two cents worth in to this. When the school nurse flagged my daughter for scoliosis, I had my daughter take her shirt completely off. I was stunned to see that my daughter had a completely windswept look to her off to her right side. I realized that the nurse was correct and I immediately set out to research what was to be done to help her. (By the way, I was unable to see her scoliosis with just a small camisole ballet leotard on, which amazes me to this day).

    On the internet, I was immediately taken with Spinecor's claims regarding permanent curve reduction and was impressed with the photographs on their site showing the difference in the look of the backs of their patients. I, of course, wanted that for my child too. However, when I went to the orthopedist and I suggested the Spinecor to him, he wouldn't hear of it. And I am so fortunate about that because with the enormous growth forces on her spine in the past year, I am quite sure there would have been no way that a flexible brace made of straps could have possibly held her curve during that dramatic growth phase. The forces on her spine from her rapid scoliosis progression caused her spine to turn into a thoracolumbar curve during the year this growth was occurring while she was wearing the Charleston Bending Brace at night. I was actually scared that we were causing the compensatory curve to turn into a major second curve. There were a few times when I saw her spine in what looked like a muscle spasm very curved, however, she didn't feel any spasm...I thought for sure she would be progressing to surgery.

    Fortunately, now that she is past her peak growth, the curve has returned to its initial shape just with both curves slightly smaller than her initial x-ray. In my daughter's case she needed that dramatic in-brace correction she achieved in her brace to weather the huge forces acting on her spine during the past year.

    Just another observation, when the orthotist fitted my daughter's Charleston brace I asked him about the Spinecor also, and he felt that the results they achieved were due to measuring differences, not necessarily actual results. And those nice pictures they put up of the improved looking backs, well, I've seen that improvement in pictures of results with the Cheneau braces and, in fact, my daughter's back has improved so she doesn't haven't that windswept look now either. She stands quite straight and vertically.

    Obviously, my daughter's experience is not the normal experience, so these are just my observations in case it helps anyone's research here. I'm impressed with the seeming corrections on the younger Spinecor patients on this forum, but I don't think it would have worked with the rapid peak growth that was occurring on my daughter. Just another reason to be very careful about which brace is being used in any particular situation.

  8. #38
    Join Date
    Dec 2008
    Posts
    494
    thanks for sharing that

  9. #39
    Join Date
    Jul 2008
    Posts
    407
    Quote Originally Posted by concerned dad View Post
    Regarding the country of invention and manufacture. I guess the relevance of that escapes me.
    That was the thing that got me. Invented in Canada? I never knew that was a bad thing.

    My only concern is wild claims by people or organizations. The point about research is a good one, and usually what brings people here too.

    Brad
    Surgeries July 26th & August 3rd 1983 (12 years old)
    Still have 57 degree curve
    2 Harrington rods
    Luque method used
    Dr David Bradford
    Twin Cities Scoliosis Center
    Preop xray (with brace on)
    Postop xray

  10. #40
    Join Date
    Apr 2009
    Posts
    1,258
    Agree Q-D .. what difference could it possible make .. find my mind racing around the universe on that one and remain ever clueless.

    Also agree that wild claims, for any treatment, are red flags.

    Did an Internet search for "permanent" "correction" and "spinecor". Could not find any web pages (including my provider's) that made any statement to the fact that treatment was a permanent correction. I did find many providers taking more cautionary viewpoints: i.e, it was too early to pass judgment on this. So, if anyone finds one please post it - you know, i'll be writing them a nice letter!

    Adult curves, i am learning more about them than i wish (#4 & #10):
    http://www.ncbi.nlm.nih.gov/pubmed?t...Joseph%5Bau%5D

    Noticing too, that when i read studies, i have to give them second and third looks - after seeing just what i want to see


  11. #41
    Join Date
    Mar 2009
    Posts
    1,090
    Mamamax, it does look like Spinecor has changed the site from over a year ago....they do now tend to be talking about the brace being used for curves under 30 degrees, and not nearly as much information as the curve reduction being permanent.

    "SpineCor®’s unique approach to treatment by global postural re-education has been shown to give progressive correction over time which, unlike any previous brace treatment, is extremely stable post brace weaning." That's about the most in a brief look that I've found now (they used to be much more effusive about their permanent reduction results). They still have the same Case Studies up, such as Case Study 4:

    http://www.spinecorporation.com/English/index.htm

    ...and I have to say now that I have a more experienced eye, I can see why the orthotist thinks that their results may have more to do with measuring than what is actually there, especially since as TXmarinemom says, these x-rays may very well be in-brace.

  12. #42
    Join Date
    Apr 2009
    Posts
    1,258
    Hi Ballet Mom ~

    The web link you give only brings up the Spinecor Manufacturer's home page - but i did go looking for Case Study #4. Have not found it yet - but did find a case study #1. The after treatment xray of this case is definitely out of brace (or the metal snaps in the pelvic belt/base would show up). What is seen in this xray is a pelvic shield, used in all xrays of young folks to protect them from radiation. Case study one states: Patient's postural correction and Cobb angle reduction have been maintained three years post bracing. SpineCor Brace wearing ceased 3 June 1999 after 15 months of wear.

    Case study one shows first, an out of brace xray (with pelvic shield) - then inbrace xrays (you can tell its in-brace because you can see the pelvic belt metal snaps along with the pelvic shield - i can identify this because i wear the same pelvic base). The last xray is out of brace with only the pelvic shield (and wording indicates that it is taken 3 years post treatment).

    Would send the web link but it will only revert back to the home page, as the one you posted does. How does this information compare to Study #4?

    I do wish the Manufacturer's web site was a bit easier to navigate (and copied web links would go directly to the information we try to share).


    Case Study #1 is found under:
    Patient Information (English version)
    Spinecor Treatment - Overview
    Click on: case study
    Last edited by mamamax; 05-11-2009 at 07:03 PM.

  13. #43
    Join Date
    Mar 2009
    Posts
    1,090
    Hi Mamamax,

    When I go to the Case Studies page, I have links for four case studies, one underneath the other. Yes, it's frustrating that you can't link directly to the page you want.

  14. #44
    Join Date
    Apr 2009
    Posts
    1,258
    Hi Ballet Mom ~

    Agree 100% ... the art of sharing links could be improved at the manufacturer's site. I did go outside searching (on the web) and found a Case Study #4, is this it? http://www.spinecorporation.com/Engl...dies/case4.htm

    If so - this is rather a poor representation ( i think) - Case Study #1 (within the manufacturer's web page) is much clearer. The Case Study #4 that i found looks like some poor quality films. View one is definitely out of brace with pelvic shield - View two definitely in brace - View three and four are also out of brace. View four is truly low quality but those pelvic base snaps would appear even in a poor quality film (like view two). Not real impressive given the film quality - imagine they keep it up as it is representative of a 5 year follow up.

    Can you give me a step-by-step instruction to the manufacturer's case study page (English version) .. i'm having great difficulty finding it.

  15. #45
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903


    Case #4, alone and all by itself, engenders doubt about the claims of Spinecor.

    And this is in keeping with the experience of one among us.

    I now understand why their results are not believed by many in the orthopedic surgical community.
    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."

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •