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Thread: Vertebral Stapling

  1. #106
    Join Date
    Jul 2006
    Posts
    20
    Oh my. Well Gerbo, for the sake of parents actively seeking this route for their child, I'll repeat:

    My share is that of firsthand, face to face information given to us by Dr. Betz, Ashgar and Cerrone over the past year and a half. I provided a detailed description of how, in this past year and a half, the procedure has progressed immensely. I was shown staple sizes, the original one size for all, vs. the newer ones for use on younger children. I have looked over slides of children who have had rods, VEPTr, and stapling as well...all in consideration of our own decision making. I have followed children who have had the procedure done ranging from 6-7 years ago..to current.

    Also, as said, Janet Cerrone makes herself readily available to any and all who wish to call her regarding information on this, and all options. My note about googling publications was just that while available online, and easy to cut, paste and share one must be knowing and cautious of the date Of the materials, as new developments are not immediately published, and not as worthy as firsthand, Dr to patient updates.

    I hope this helps!
    Last edited by milesmom; 11-26-2007 at 12:30 PM. Reason: not clearly directed
    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. #107
    Join Date
    Jul 2006
    Posts
    20

    also

    An afterthought. I thought I would share what I did have saved to disc. ( I honestly dont have a whole lot of time to look up new abstracts daily, my three keep me running, Im sure you all know that all too well!!)

    Anyway, the latest I'd read was a ( rather limited and repetitive) 2007 abstract (link below).
    Also, something else I found rather compelling regarding experimental treatment conversations, is an experpt from my Anthem subscriber handbook for 2007. (also below).

    www.spinejournal.com/pt/re/spine/fulltext.


    Aetna considers the following types of scoliosis braces experimental and investigational:

    SpineCor Dynamic Corrective Brace
    Providence Scoliosis System
    Copes scoliosis brace
    The Rosenberger brace.

    Im not familiar with all of these braces. I wonder why only some are considered experimental?
    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)

  3. #108
    Join Date
    Oct 2007
    Posts
    99
    OMG Adele you do more research then I do.

    I see we are getting to a better place!!

    Stephanie
    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*

  4. #109
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757

    Copes brace ...

    Quote Originally Posted by milesmom
    Aetna considers the following types of scoliosis braces experimental and investigational:

    SpineCor Dynamic Corrective Brace
    Providence Scoliosis System
    Copes scoliosis brace
    The Rosenberger brace.

    Im not familiar with all of these braces. I wonder why only some are considered experimental?
    I was very surprised Aetna considered the Copes system *anything* (see The Louisiana Atty General's Page), and my curiousity was piqued.

    Here's what Aetna's "investigational" status means in the Copes case:

    "Aetna classifies the Copes brace as investigational, which means that its insurance policies do not cover its use. Its clinical policy bulletin states:

    The Copes Scoliosis Brace is a custom-fitted polypropene support structure that utilizes air to attain spinal curvature correction. This is achieved through the use of strategically placed pneumatic force vector pads that are adjusted every 4 to 6 weeks during treatment. The brace is generally used for 12 to 36 months in conjunction with hydrotherapy, regular muscle strengthening exercises, as well as chiropractic treatments such as osseous manipulation and muscle stimulation therapy. There is no scientific evidence that the Copes Scoliosis Brace is effective in treating scoliosis. Additionally, there are no published data concerning the long-term effectiveness of this device, the rate of recurrence of scoliosis after patients stop wearing the brace or the number of patients who eventually have to undergo surgical intervention. Furthermore, the Copes Scoliosis Brace is used in conjunction with hydrotherapy, regular muscle strengthening exercises, and chiropractic treatments. Thus, it is unclear what role the brace actually plays in the improvement, if any, of the condition [15]. "
    Last edited by txmarinemom; 11-26-2007 at 01:39 PM.
    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

  5. #110
    Join Date
    Jul 2006
    Posts
    20

    interesting..

    WOW!!!! I heard of that case, and indeed it IS questionable while the whole "operation was shut down" (so to speak)...that the said orthotic would still be considered at all in a current insurance handbook.
    Even if it were viable, I imagine the stiff reg's of insurance coverage ins and outs would have it classified as some sort of physical therapy ( as related to the hdrotherapy part of it) which, in Anthems case is always so limiting.
    Dont get me started on my Michael Moore soapbox speech about the healthcare system!!!
    Very interesting addition, you know your stuff!
    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)

  6. #111
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    In the SRS conference from Sept 2007, there are some good presentations on the VBS system (one presented by Dr. D'Andrea, at least). The SRS presentations are a good way to see the newest studies and documentation of research being done in the orthopedic world. This year's conference has lots of pediatric information.

    Also, please remember that when YOUR child is the one affected by scoliosis (whatever causes or doesn't cause it) you become passionate about it. With new technologies there comes the need to make decisions. Even 20 or less years ago parents had NO choices. Kids were fused, or were allowed to progress beyond hope. Not an option, IMHO. Today, we as parents have more choices to pick from. We have to use our intelligence and common sense to find the RIGHT option, at the RIGHT time, by the RIGHT doctor/surgeon for our child. One size doesn't fit all anymore. In my Braydon's case, his condition was clear-cut - surgical intervention was required. Even then, we had a few surgical options to choose from (ie, VEPTR, growing rods (single or dual), more fusion, instrumentation, no instrumentation, etc.). It is heartwrenching. When its YOUR child you don't care much about anyone else, only finding the right solution for YOUR child. Places like this forum allow parents and adult patients to share experiences and hope to help other families be better informed before making potentially life-changing decisions for their children. When your child is in that unique/rare category, you don't have many places to turn for help and support. This needs to be one of those places - a safe haven, of sorts.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  7. #112
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Quote Originally Posted by Carmell
    With new technologies there comes the need to make decisions. Even 20 or less years ago parents had NO choices.
    Thank you for addressing that point, Carmell - I said something very similar waaaaaaaaaay far back in this thread.

    I was one of those kids who's parents had few choices.

    The ONLY reason I started reading this (and the SpineCor/alt treatments) thread is to stay abreast of emerging techniques. I certainly didn't expect the hurricane that materialized.

    The research and curiousity about scoli is just a habit for me: For years, I feared I'd have to face scoliosis - via the AIS familial link - treatment in my own children ... and I wanted to be armed with all the data available.

    Thank goodness I never had to, but I'm equally as thankful there does appear to be some viable treatment options available.

    As I also said before, I'm most encouraged by the identification of AIS genes. I hope the REAL cure is prevention - and no parent or patient has to clock the experience we've garnered.

    Regards,
    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

  8. #113
    Join Date
    Oct 2007
    Posts
    99
    Pam,

    you are absolutely correct!! Wouldn't it be great if they could identify what causes this idiopathic scoliosis. Imagine the ease parents would have?!?

    Until then, we make the best decisions we can!!

    Stephanie
    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. #114
    Join Date
    Jul 2008
    Posts
    4

    Growth of Spine post-VBS

    What are the implications to the growth of the spine post- VBS? I have read a great deal about this but have not seen this addressed specifically. As the staples function to modulate the curve through the natural growth of the spine, it seems to me that by extention, once a straight curve is reached and the spine continues to grow, the staples will either over compensate or constrain the growth of the spine.

    I am sorry if this is a dumb question.

    Thanks,

    Paul

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