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Thread: spinecor

  1. #2461
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    Jul 2006
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    20
    QUOTE: "A while back there was a post (I think on this thread) where someone made the comment that spinecor is the only brace that can "cure" scoliosis - " END QUOTE


    Lets guess who that SOMEONE was... the same person who claims that Dr. D'Andrea staples 15* curves before bracing(baloney) and that anyone whose opinions vary and hopes are high in new innovative procedures, only "wants to hear about sunny days at the lake, rainbows and butterflies...and the upside of VBS."

    It as though the word stapling sends you into fits of anger. Please, stop confusing new parents about this. Share your wealth of knowledge on casting and spinecor...it is there that you offer a great service to those interested in those particular routes!
    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)

  2. #2462
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    Sep 2007
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    338
    Cheryl--

    Thanks for that tidbit of information from your pastor. When we began to take this road off the mainstream I told myself that if we could just delay surgery until Sidney stops growing (it hasn't been recommended yet, but the surgeon believe he is headed that way) I could count that as some measure of success. But I so hope we can avoid it altogether....every little bit of experience people share is helpful.

    Mary Ellen

  3. #2463
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    Jan 2006
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    513
    Jill,

    Rachel goes again next week. I am praying for good results.

    Rachel was diagnosed, like your Katie, at about 7 with approximately a 18/17 curve or very close to that. Our MD told me she was not a candidate for bracing. I asked about bracing her at her first visit. He said the hard braces weaken the trunk muscles and were not used in curves under 25 degrees. He did not even know Spinecor existed. Three years later, at 10 years of age, her curves were 38/27. She was 10 years old and I was told by Shriners (A different ortho than the first mentioned) that since she had not even begun her adolescent growth spurt, she had a 100 % chance of progressing to surgery. So far we are beating the odds!

    I wish I had know Spinecor existed three years ago, when her curves were small like Katie's. I found Spinecor own my own when the Boston brace did not correct her curve even 1 degree. I told him about the Spinecor, and he said to send him some information, but he was not really interested. The other option offered to us was the Milwaukee.

    But maybe our experiences will help many others. I hope so!

    Your results with Katie warm and fill my heart with gratitude. Every child corrected fills me with joy!
    Last edited by cherylplinder; 11-29-2007 at 07:10 PM.
    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.

  4. #2464
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    Aug 2004
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    ny
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    Quote Originally Posted by Celia Vogel
    Yes! Dr. D'Andrea at the most recent SRS meeting indicated that she would staple a child with a 15 degree curve as the first method of treatment.
    That statement is totally inaccurate. In addition to, as Amanda suggested, listening to Dr. D'Andrea's entire speech, I invite everyone to visit the vertebral stapling support site (see the link below) and read about kids who are NOT candidates at this time because their curves are too small (18, 19, etc.). You will hear firsthand accounts from their PARENTS.

    In fact, one 11 year old male patient, had gone for a consult with Dr. D'Andrea a year or two ago - his curve at that time was I believe ABOUT 21 degrees and he had just started bracing. He strongly WANTED the stapling because he hated the brace but Dr. D'Andrea refused because the curve was only 21. She told him to stick with the bracing (it had been prescribed 16 or 18 hours I believe) and she'd monitor him. If you like, I will contact his mother and ask her to post (she's also a member of our VBS support group so the boy's story is there to read along with others I refer to above who were told that a curve of 18 or 19 degrees would NOT qualify for stapling).

    Once again, I have no desire to get into a "debate" but I can't sit by while totally fabricated information is posted. It's just not fair to parents.

    Celia - For some reason you can't bring yourself to speak the truth when it comes to stapling, so please FOR ALL THE PARENTS YOU ARE DOING A DISSERVICE TO, refrain from posting on the subject. I can't understand why you keep brining it up, even on the Spinecor thread!

    (One good thing has come out of all this - you actually have helped PUBLICIZE the stapling and at least one parent said that our discussions here helped her make the decision to look into it, and to ultimately go ahead with it after going to Shriners for a consult).

    If it's necessary in order to put all of this to rest once and for all, I will gladly contact Dr. D'Andrea (or a doctor at Shriners - or perhaps even Janet Cerrone) and have them come on here to explain how children are accepted or rejected for the stapling and to post that NO 15 DEGREE CURVE WAS EVER - OR WILL EVER - BE STAPLED.

    But I doubt even that would stop you from posting inaccuracies.

    If anyone is interested in accurate information, here's the link I referred to above:

    http://health.groups.yahoo.com/group/staplingsupport/
    Last edited by mariaf; 11-29-2007 at 07:29 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/

  5. #2465
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    Mar 2004
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    I wish you would stop advertising your vertebral stapling support site every chance you get! If you don't believe that dr. D'Andrea did in fact make that statement, listen to the SRS webcast yourself! Asked by Dr. Dormans if a case presented itself where the scoliosis was expected to progress and this child presented with a 15 degree curve would she staple the curve???? The answer was an overwhelming....YES!

    42nd Annual Meeting
    Pre-Course
    10:05am Discussion play4
    http://www.istreamplanet.com/srs/def...&conf=7&edi=23
    Last edited by Celia; 11-29-2007 at 07:40 PM.

    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

  6. #2466
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    ny
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    Celia,

    Why on earth would it bother you that folks find out about a support site full of parents who've actually had EXPERIENCE with the stapling? Or that they can hear from parents whose kids are 2, 4 or 6 years post-op????

    Why does that sharing of firsthand information and experiences bother you so?

    Hmmmm............

    I wonder.

    Perhaps it's because you'd rather they just believe anything you say, having NO actual experience with stapling.

    Luckily, I find that parents are MUCH too smart to fall for 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/

  7. #2467
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    Mar 2004
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    Excuse me! You and Amanda just accused me of being a liar! Let's not try to confuse by quickly changing the subject! Did you listen to the presentation?? Case closed!

    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

  8. #2468
    Join Date
    Oct 2007
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    99
    OMG Celia....

    VBS is a fantastic option to bracing. If parents don't look into it, they are doing a huge disservice to their child!!

    IF YOU wish to speak as if you actually know what you are talking about, at least have a consult with Dr Betz. What you are stating is made up in your mind!!

    Stephanie
    Last edited by stephanieC; 04-04-2010 at 11:32 AM. Reason: took out some of the "ugly". Had to be done!! ~S~
    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*

  9. #2469
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    Jul 2006
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    Actual D'Andrea quote..

    Below is an ACTUAL quote, as said by Dr. D'Andrea.


    Linda D'Andrea, M.D. (in regards to stapling)
    "Her 20 degree thoracic curve has now decreased to 11 degrees, and her 25 degree lumbar curve is now 15 degrees." ( after the VBS procedure)

    "If she came IN with 11 and 15 degrees, I probably wouldn't even brace her."

    So, what does that mean?

    What she is actually stating was that she would NOT staple an 11, or 15 degree curve...and that she "wouldnt even brace her" with such small curves.

    WHAT SHE DID NOT SAY IS THAT SHE WOULD STAPLE A 15 DEGREE CURVE.

    Celia, I did my best to compliment you on your knowledge of spinecor and serial casting, but I must agree with the other ladies that you are not only misleading parents...you are being destructive with your half studied, half witted attempts to appear informed on VBS. Do you also hand out fake information to others say, weighing heart surgeries or lung transplants on other SUPPORT forums? Do you gain enjoyment out of this phasad that you are well versed, and have experience with VBS?
    You do however have a great deal of experience with BS.
    You could really be damaging to a child's future should their parent/s read your misinformation and base their decision upon it.
    Last edited by milesmom; 11-29-2007 at 11:02 PM.
    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)

  10. #2470
    Join Date
    Oct 2007
    Posts
    99
    celia,

    1. You do not actually understand the articles you read or the conferences you watch.
    2. It was not Dr Dormans who asked Dr D'Andrea that question, It was Bob Campbell.
    3. The question posed to Dr D'Andrea was, If a patient came to you with a 15 degree curve and a known 97% chance of progression( known because the premise is futuristic in that a confirmed factual genetic test has shown this patient to have a 97% chance of progression.(get it?? it is a hypothetical question assuming genetic testing has confirmed a liklihood of progression to be 97% likely) Would she in fact do VBS? Her answer was not an "overwhelming" yes, as you stated but rather a thoughtful and well considered yes. Dr D'Andrea stated that if she could assume that the patient was very young with at least two years of growth left and this 97% PROVEN liklihood of progression, then yes, she would do the stapling. This makes perfect sense to me!!

    Again and again you show to have an over the top negative response to surgery, Why? Pediatric surgery here in the US is proven statistically predominently safe. Is that not so in Canada??

    VBS is not ordinarily done on children with curves lower then mid twenties. I can not say that there aren't certain situations... I just don't know, I only know that this is not the norm.

    Would a child be put into a brace with curves less then 20 degrees??? Why.... how do you know that curve will progress?? Then, once in that brace if the child never progresses, are they doomed to spend the next 6-8 years of their life in that brace??

    These questions are difficult to answer.

    Stephanie
    Last edited by stephanieC; 04-04-2010 at 11:35 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*

  11. #2471
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    Sep 2006
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    416
    WNCmom,
    Sorry to interrupt here, but I couldn't send this lengthy message privately to WNCmom (too long), so I'll have to interject amongst you're discussion... don't mind me.
    Quote Originally Posted by WNCmom
    ...when a curve reaches a certain point and the muscles around it are stretched to the limit on the convex side and tightened up on the concave side, the muscles themselves can pull on the curve without any growth happening, and increase the angle, or, as she put it, cause additional spinal "collapse." At least part of the idea of SI and, in our case, MFR, is to break the pattern and allow the muscle to release the curve so the spine can grow straight if it wants to.
    The concept of spinal collapse occurs when the system (soft tissue including muscles, ligaments, articular tissues, ...fascia, etc.) can no longer provide sustainable support to the deformation of the skeletal system... in this case specifically the spinal curvature. Ultimately, gravity wins the battle... the forces imposed on the tissues from the weight of the body segments, angulations and so forth are far too great for the tissues to resist and collapse occurs.

    As far as tissues themselves ("muscles") pulling the curve further... That's typically not the case unless there is an underlaying neurologic deficit/component to the cause of the scoliosis. The muscles on the concave/shortened side actually become inhibited, as demonstrated by EMG testings, ... But the fascia that comprises the shape and 3-dimensional form and structure of what we call 'muscles' actually shortens to the resting length determined by the position of the spine. It is the inelastic collagen fibers of the fascia (which constitutes what we call a 'muscle' along with the cellular muscle fibers) that restrict the spine from lengthening out of the concavity. And it is gravity that continues to force the curvature further into its progression. As long as a curve in the spine is present, there will always exist the possibility for progression due to gravitational forces...

    It is ultimately the tenacity of the 'cause' of the scoliosis combined with the adaptability, strength and resiliency of the individuals system that will determine whether it progresses and/or how fast. In ideopathic cases, bony deformity follows the progression, rather than dictating it. But once deformation happens, it takes more sustained efforts to reverse the process, ...so you will generally see a greater likelyhood of progression if left unattended.

    The goal, in part, of SI is to provide the openings (freeing of those restrictions) so that the body can ultimately orient to gravity more efficiently... which it inherently wants to do as we see with children when they learn to walk and so forth. Working in the proper places will allow for this potential change to happen... working on the fascia in the 'wrong' places will send a scoliosis spiraling into further progression.

    structural

  12. #2472
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    Jan 2006
    Location
    Austin, Texas
    Posts
    112
    Stephanie,

    You ROCK ~ girlfriend ~ THANK YOU!!!!!

    Adele I believe this is the article you are quoting from ~ and oh my you were 100% on your info ~ go figure. http://www.wchstv.com/newsroom/healt...ife/2082.shtml
    Amanda

    Mom to Lorena 7 yrs old
    Diagnosed 8/2005 ~ 26 Degree Curve
    Progressed to 42 Degrees by Dec 05
    Milwakee Brace 1/16/06 - 6/26/06
    Vertebral Stapling on 6/26/06 @ Shriners in Philadelphia
    26 Degree Post Op Curve
    Last X-Rays December 07 ~ 26 Degree Curve
    Email: domingo_amandapompa@msn.com
    Website: www.vertebralstapling.com
    YouTube Video: http://www.youtube.com/watch?v=n6GmX3K7FIs


  13. #2473
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    Jan 2006
    Location
    Austin, Texas
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    I don't want to edit ~ but I hit the wrong key.

    Stephanie thank you for clarifying what Dr. D'Andrea actually said and Celia once again you don't have a clue what you are talking about so STOP! I really wish there was a moderator here that would ban you from posting anything PERIOD! Now I'm wondering how much of a benefit you really are. Since I know very little about spinecor or casting I've always trused what you say as true and most importantly accurate information but I've just realized if you are THAT delusional and misinformed about VBS you must be that way about spinecor and casting as well.

    Exactly what type of person does what you are doing to so many vulnerable parents? Why so much anger? Why so much hatred? You truly are a very hateful person to contiue what you are doing.

    For everyone reading this ~ Celia is the ONLY reason Maria and I started the VBS support group site because it was IMPOSSIBLE to carry on a real supportive and helpful conversation. Our group started on 9/10 and we already have 51 members and I can honestly say there has NEVER EVER been this type of childish arguing and bickering. We are all there to support and answer questions to the best of our knowledge and experience. The majoriy of these people are afraid to even post on this site.

    Celia you must be proud running off so many people, but rest assured Maria, Stephanie and I are not going anywhere we will be here day in and day out making sure people are aware that you have no credibility whatsoever with anything scoliosis related. Thank you for making that FACT more obvious to everyone.

    ~A
    Amanda

    Mom to Lorena 7 yrs old
    Diagnosed 8/2005 ~ 26 Degree Curve
    Progressed to 42 Degrees by Dec 05
    Milwakee Brace 1/16/06 - 6/26/06
    Vertebral Stapling on 6/26/06 @ Shriners in Philadelphia
    26 Degree Post Op Curve
    Last X-Rays December 07 ~ 26 Degree Curve
    Email: domingo_amandapompa@msn.com
    Website: www.vertebralstapling.com
    YouTube Video: http://www.youtube.com/watch?v=n6GmX3K7FIs


  14. #2474
    Join Date
    Jul 2006
    Posts
    20

    Amanda

    Yes, that was the article, interestingly regarding the same topic and numbers. It would be rather odd that Dr D'Andrea would have such different opinions on such similar situations. She is not in the business of doublespeak.

    I just want to express my gratitiude to Amanda and Maria for running a site that yes, is calm, collected and does what its put in place to do. You have been the salvation for many worried, sleepless parents and offer sound experience. I am proud to be a part of th e forum, and the many good things which come of it. What a family!

    I appreciate that this site is in place as well, but saddened that just about every time I come here for discussion and support, I end up feeling more like I need to defend certain perspectives. ( kinda takes everything away from the words 'open' and 'forum'...)

    Should any more parents decide to come to the Yahoo VBS SUPPORT forum (as a great number already have) I will suggest to run, not walk...right on over to this less combative setting. The info here, regarding VBS by Mz. Vogel...is simply muddled and misinforming.
    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)

  15. #2475
    Join Date
    Mar 2004
    Posts
    1,138
    Quote Originally Posted by stephanieC
    ... The question posed to Dr D'Andrea was, If a patient came to you with a 15 degree curve and a known 97% chance of progression( known because the premise is futuristic in that a confirmed factual genetic test has shown this patient to have a 97% chance of progression.(get it?? it is a hypothetical question assuming genetic testing has confirmed a liklihood of progression to be 97% likely) Would she in fact do VBS?

    Well guess what???!!! With 20/20 hindsight my daughter's chance of progression was 100%! I am thankful and grateful that I had alternatives besides surgery and I certainly hope this holds true for future generations because the way things look right now with the BRAIST study underway, people travelling huge distances to get the Spinecor brace because only a handful of orthopaedic doctors carry it and the rest feign ignorance about it's very existence, people complaining they just can't live with braces or that casting is barbaric (yet it works!!!!) etc. etc....our grandchildren won't have any other choice but surgery. Is this what we want?

    Milesmom,

    I was having a discussion with Renne before Maria et al. decided to join in. This is a non surgical thread so in the spirit of non surgical treatments I think we should keep the discussion on bracing and not vertebral stapling.
    Last edited by Celia; 11-30-2007 at 12:19 AM.

    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

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