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Thread: Setting the Record Straight

  1. #211
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    Quote Originally Posted by Pooka1 View Post
    Good point. Let's "watch and wait" to see if he puts the link on the links page.

    In the alternate, maybe he can state WHY he doesn't want to do that if it doesn't appear. If it simply doesn't appear without explanation then we are allowed to draw inferences I suppose.
    That makes perfect sense, Sharon. Thanks.
    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. #212
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    It seems to me that if a link was made to your VBS forum, it would be somewhat of an endorsement by the NSF of that procedure. It is certainly within their rights and duty to not endorse an experimental procedure until there are somewhat longterm studies associated with their safety and effectiveness. I actually agree with Mr. O'Brien's actions here. In fact, there could be legal ramifications in the future if he were to link to a site, in effect endorsing it, and then having it turn out to have problems associated with that surgery in the future.

    I am not saying that there are problems with VBS, I am simply pointing out that they really don't know at this point, it is very new, and there are apparently many surgeons who don't believe it is the right thing to be doing.

    Most of the links are to surgeon or professionally related organizations and where do you draw the line if every parent-oriented forum wished to be linked? I was easily able to find your forum off of your links in your post. It is nice that the NSF allows that type of advertising to occur.
    Last edited by Ballet Mom; 06-12-2009 at 10:58 AM. Reason: Wrong abbreviation

  3. #213
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    Hi Ballet Mom,

    While I don't agree that NSF would be liable for merely posting a link to ANY site (would google be liable if folks found a site through them?), it WOULD be NSF's right to refuse to post a link for any reason. If NSF wants no liability for posting links to any site, all they have to do is state so on the same page, add a "disclaimer". (I've worked at a law firm for 25 years and one of the things we handle is liability claims).

    (p.s. As soon as folks enter our site, they read a statement that we are not medical professionals, merely parents offering support and sharing experiences.)

    In any event, that is not the point here.

    Rather, my issue is that at first, I was asked by Joe to get Dr. Betz's endorsement of the site.

    I did.

    Still no link.

    Then I was asked "why isn't there a reciprocal link to NSF on the VBS site"?

    We added one.

    Still no link.

    I just don't appreciate being given the runaround - that's all. I think that's fair. All Joe had to say as "no" when we asked him about the link. One word.

    Just to clarify - while a lot of surgeons still don't perform VBS, the number is growing every day. And perhaps more importantly, a lot of well known orthos at top-rated orthopedic hospitals now perform the surgery - not just at Shriners (although their doctors do have an excellent reputation) but in New York, Boston, California, St. Louis, Atlanta, etc. The list is posted on our site and most folks would recognize many of the names (Betz, Lubicky, Oswald, Hresko, Vitale etc. - I know I'm forgetting some and the list may not even be complete becaues as I said it seems we are constantly finding out about more doctors coming on board with VBS).

    Also, many insurance companies now pay for VBS and no longer consider it "experimental".

    I know you were not necessarily saying any of this - but I just wanted to clarify for folks who might misunderstand.

    Regards,
    Last edited by mariaf; 06-12-2009 at 11:20 AM.
    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/

  4. #214
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    Quote Originally Posted by Ballet Mom View Post
    I was easily able to find your forum off of your links in your post. It is nice that the NSF allows that type of advertising to occur.
    I'm very glad folks can find our forum. I don't think of it as "advertising" though (that term, to me, is usually associated with money - and as Cara pointed out, nobody on the VBS forum makes a cent - in fact we absorb some small costs associated with running the site) - rather, I think of it as making sure a parent who might be looking for information and support finds it.

    That's all we are trying to do - not make money, not compete with anyone or any other methods of treatment - just help other parents as a way to "pay it forward".
    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. #215
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    So noted. Replace "advertising" with "publicity".

  6. #216
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    Quote Originally Posted by mariaf View Post
    Also, many insurance companies now pay for VBS and no longer consider it "experimental".
    So VBS is no longer considered experimental/investigatory by most insurance companies?

    I'll stop referring to it as such if that is true.

    I did a quick google search and the first two that came up said it was still investigatory and not medically necessary or something like that though I don't know if that means they won't pay.

    On the other hand, I think there is presently MORE quality evidence in favor of VBS than for any brace yet insurance companies pay for that!
    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. #217
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    Until the first person who had that surgery is well into middle-age and beyond, and I believe someone mentioned these patients aren't much farther along than high school, nobody has any idea what the longterm effects are.
    And parents should certainly know that when entertaining the idea of having their kids stapled.

    It will be a wonderful thing if vertebral stapling is an answer to some of the scoliosis kids out there, until a long time into the future, nobody has any idea what the effect on the spine will be.

  8. #218
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    Quote Originally Posted by Pooka1 View Post
    So VBS is no longer considered experimental/investigatory by most insurance companies?

    I'll stop referring to it as such if that is true.

    I did a quick google search and the first two that came up said it was still investigatory and not medically necessary or something like that though I don't know if that means they won't pay.

    On the other hand, I think there is presently MORE quality evidence in favor of VBS than for any brace yet insurance companies pay for that!
    ETA: Okay I have now come across the policies of several insurance companies and can't find one that covers VBS. An example: Cigna...

    CIGNA does not cover the following treatments and devices for the management of scoliosis because they are considered experimental, investigational or unproven (this list may not be all-inclusive):

    - vertebral body stapling


    It's jarring to see VBS on the list with modalities that have no good evidence to date including electrical stimulation(!) and Spinecor. I predict VBS will be the first of these presently experimental modalities to be approved (by far!).

    Also interesting is that most of the companies I checked consider the Providence brace to be experimental and won't cover the cost. I didn't know that that brace was considered more experimental than the Charleston, Boston, etc. even though these other braces are covered. That seems odd.
    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."

  9. #219
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    Also interesting is that most of the companies I checked consider the Providence brace to be experimental and won't cover the cost. I didn't know that that brace was considered more experimental than the Charleston, Boston, etc. even though these other braces are covered. That seems odd.

    My daughters Providence Brace was fully covered by BCBS. She had it for about 8 months now.

  10. #220
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    [QUOTE=Ballet Mom;78592]Until the first person who had that surgery is well into middle-age and beyond, and I believe someone mentioned these patients aren't much farther along than high school, nobody has any idea what the longterm effects are.
    And parents should certainly know that when entertaining the idea of having their kids stapled.
    QUOTE]

    Ballet Mom,

    I can tell you as someone who DID entertain the idea of VBS (and then decided to go through with it after MUCH consideration, soul searching and research) that we, as parents, DO realize that there are no patients who have reached middle age yet.

    However, as with MANY procedures that have come into use in the past decades, that is the case as well.

    I doubt any parent would opt for VBS if they had not first given it much thought, and did all of their homework.

    Of course, for some it's not the best option. For others, it may be. As with most treatements alternatives, they all have their place.
    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/

  11. #221
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    Quote Originally Posted by Pooka1 View Post
    So VBS is no longer considered experimental/investigatory by most insurance companies?

    I'll stop referring to it as such if that is true.

    I did a quick google search and the first two that came up said it was still investigatory and not medically necessary or something like that though I don't know if that means they won't pay.

    On the other hand, I think there is presently MORE quality evidence in favor of VBS than for any brace yet insurance companies pay for that!
    Hi Sharon,

    This is by no means a scientific survey, but I made the statement that some insurance companies do now cover VBS because several parents have told me their insurance companies HAVE paid for it. Some had to file appeals or get their doctors involved but there have definitely been cases where it WAS covered. There have been some surgeries performed out of Children's Hospital of Boston where I am quite sure insurance paid for it.

    Most of the info I have on this is from talking to parents on the VBS site who actually dealt with this issue. If you look at the list of doctors there, now we have many who operate (no pun intended) outside of Shriners. So, if insurance wasn't covering VBS, at least in some instances, these doctors probably would not be performing the procedure.

    Maybe I should start a thread on the VBS site asking parents of those who DID get their insurance companies to pay to tell me which companies they were so that I can share that info with others.

    Take care,
    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/

  12. #222
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    Hi,
    I just want to share my first hand knowledge regarding insurance and VBS. Harvard Pilgrim covered my son's surgery, Aetna & Blue Cross have covered several other VBS procedures at Boston Children's Hospital over the past 1.5 years. My son was the first at Boston - 12/07. Mass Health has denied coverage of VBS recently (this is the "free health care system" provided for eligible residents of Massachusetts).

    From what I understand, insurance companies do not auto-approve VBS.........the drs need to appeal, and then it is usually covered.This is how it happened in our situation, as well as several other parents I have spoken to from Boston Children's Hospital. The documents available on-line are the official policies - but these can be and are successfully appealed for VBS.

    I hate to see this thread become another volatile conversation about VBS. As any parent knows, the decisions regarding treatment for your child's scoliosis are very difficult. With any treatment - there are no promises.

    Personally, we chose VBS because my son was not going to be compliant with bracing ( he hated the brace), and at age 11, and 40 degrees we were pretty sure he would be facing fusion. His curve was not "bad enough" for a more accepted treatment such as growing rods. So, I liked the premise that VBS will allow him to keep his flexibility.........no promises of successfully holding his curve I realize, but for us it was worth the chance that it would. If the staples don't hold his curve, he is still completely eligible for a fusion down the road. The 6 weeks of surgery and mild recovery was better for our family than fighting for 8+ years of bracing. I just couldn't see him wearing the brace still at 17 or 18+ years old ( heading off to college!) - family history (Dad is 6ft 5in.), and his growth plates indicated that he would grow until the age of 20. This was our own situation - and I realize each child/family is different. My other son was recently diagnosed with a 22 degree curve (age 14) - we are "watching and waiting" and I don't know what our decision will be if he progresses. I guess that's my point ~ none of us know what decision we will make for any individual circumstance.

    I know that VBS is not a proven cure, or a good choice for every child with scoli. Also, I wanted to clarify that our support group was designed to support parents who have decided that VBS is the best option for their child.

    ~ Cara
    Last edited by nate03; 06-12-2009 at 03:11 PM.
    Cara, Mom to Nathan
    Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
    Boston Back Brace 8/07 12/07
    VBS 12/10/07 Boston Children's Hospital
    Dr. Hresko
    40 Degrees before VBS
    11 Degrees now!! (2012)

    Nathan's VBS Video

    www.vertebralstapling.com

  13. #223
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    Given the state of the evidence, I am not surprised VBS is sometimes covered now though I could find nothing online to that effect. I guess most people who get it covered have appealed as you say.

    The more surprising thing is why bracing is covered given the conditions that spawned BRAIST. I think the insurance companies are grasping at any straw to avoid the cost of fusion surgery.

    At this point, I would pick VBS over 23 hour/day bracing if I had a JIS kid and they qualified. No question. Not sure if I would have made that decision 4 years ago... I might have tried a night-time brace first. But after that, I likely would have picked VBS over full time bracing. Life is short.
    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."

  14. #224
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    Sharon, I think sometimes what you find online regarding insurance coverage isn't always up to date....also insurance policies , even within the same company, can vary in what they will cover (based upon the insurance companies contract with the employer/company that the insured works for). For example, everything i could find online re: blue cross indicated that it didn't cover spinecor. However, when I submitted a claim, it did cover the brace (without an appeal which really surprised me). Perhaps the things I had found online were a couple years old and coverage began more recently. My guess is the same might apply to VBS - perhaps Cigna has updated their policy. Or alternately, as Cara points out, often these procedures have to go through appeal, but have a good chance of ultimately being covered. I, for one, am glad to see more insurance companies willing to consider the providence brace, spinecor and VBS!
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  15. #225
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    Vbs

    Reviewing the website was interesting to me and i think it looks promising (maybe even one day down the road for adults).

    I found the link below regarding some information - BlueCross BlueShield of Wisconsin (from 2007).

    What is the translation?

    http://www2.bluecrosswisconsin.com/p..._stapling.html

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