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Thread: VBT (Tethering) Support Group

  1. #1
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    VBT (Tethering) Support Group

    I just wanted to post the link to a relatively new FB group that focuses solely on fusionless surgery (primarily vertebral body tethering, also called VBT). The link can be found below as well as in my signature; and the FB Group is called "Scoliosis Tethering (VBT) Support".

    https://www.facebook.com/groups/ScoliosisTethering/


    For those interested, you can find things like a power point presentation on VBT, a list of surgeons around the country performing the procedures, as well as a large group of parents with personal experience (i.e., their children either already had VBT or are scheduled for it) who are willing to share their experiences, offer questions and lend their support.

    While nothing regarding scoliosis is 100% guaranteed, tethering - which has been around approx. 8 years - has, up to this point, allowed many patients to avoid fusion and has brought impressive correction in curves as large as the 50's and 60's (and even a few in the 70's). Many of the early adolescent patients have now reached skeletal maturity. In fact, as I mentioned in another post, there are three surgeons we are aware of around the country who will consider VBT for skeletally mature patients (provided the patient meet certain criteria - i.e., flexibility, etc.); and there has been one VBT performed on a 50 year old woman! The parameters for VBT are expanding every day. In fact, more and more of those in the field believe that VBT will replace fusion for a larger number of patients in the future.
    Last edited by mariaf; 02-08-2016 at 07:19 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/

  2. #2
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    P.S. There is currently a study on tethering being conducted by the FDA at Shriners Hospital in Philadelphia which those involved believe will lead to FDA approval for VBT. This would likely lead to more insurance companies covering the procedure. Currently, we are seeing some insurance carriers approve VBT/tethering, while others have denied coverage of the procedure (although a good portion of them ultimately approved VBT after an appeal).
    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/

  3. #3
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    It's by far the best surgical news we may expect to read! Fortunately there are Drs trying to include more kind of patients. A 50 years old woman with a big curve is something amazing. Certainly everyone decided to have surgery should to consider first of all this great possibility!

  4. #4
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    Quote Originally Posted by mariaf View Post
    I just wanted to post the link to a relatively new FB group that focuses solely on fusionless surgery (primarily vertebral body tethering, also called VBT). The link can be found below as well as in my signature; and the FB Group is called "Scoliosis Tethering (VBT) Support".

    https://www.facebook.com/groups/ScoliosisTethering/


    For those interested, you can find things like a power point presentation on VBT, a list of surgeons around the country performing the procedures, as well as a large group of parents with personal experience (i.e., their children either already had VBT or are scheduled for it) who are willing to share their experiences, offer questions and lend their support.

    While nothing regarding scoliosis is 100% guaranteed, tethering - which has been around approx. 8 years - has, up to this point, allowed many patients to avoid fusion and has brought impressive correction in curves as large as the 50's and 60's (and even a few in the 70's). Many of the early adolescent patients have now reached skeletal maturity. In fact, as I mentioned in another post, there are three surgeons we are aware of around the country who will consider VBT for skeletally mature patients (provided the patient meet certain criteria - i.e., flexibility, etc.); and there has been one VBT performed on a 50 year old woman! The parameters for VBT are expanding every day. In fact, more and more of those in the field believe that VBT will replace fusion for a larger number of patients in the future.

    Have there been any other adults who have had VBT since?. My understanding is that VBT cannot be done on adults as thescurve is not flexible enough. I appreciate that an adolescent/just turned adult will be able to have the procedure as they may well still be flexible, so I am really referring to adults over the age of 30?

  5. #5
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    Good distinction of older adults vs. younger skeletally mature patients. As for the latter, there have been several older teens/early 20's patients who have had VBT and currently we know of three teams of surgeons that will consider such patients for VBT.

    Right now, the one 50 y.o. patient continues to do very well. Her sister (actually a year or two older) is now scheduled for VBT with the same surgeons. I believe that in the not-too-distant future, we'll see more surgeons taking on these cases, just as we did with skeletally mature adolescents.

    Of course if you would like to join the VBT group, you can learn a lot more, and speak to these and other patients directly.
    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/

  6. #6
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    Quote Originally Posted by mariaf View Post
    Good distinction of older adults vs. younger skeletally mature patients. As for the latter, there have been several older teens/early 20's patients who have had VBT and currently we know of three teams of surgeons that will consider such patients for VBT.

    Right now, the one 50 y.o. patient continues to do very well. Her sister (actually a year or two older) is now scheduled for VBT with the same surgeons. I believe that in the not-too-distant future, we'll see more surgeons taking on these cases, just as we did with skeletally mature adolescents.

    Of course if you would like to join the VBT group, you can learn a lot more, and speak to these and other patients directly.

    Hi - do you know if this 50 year old has a structural scoliosis or a functional one? I believe that the processis not really for over 30 patients with structural scoliosis.

  7. #7
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    Quote Originally Posted by burdle View Post
    Hi - do you know if this 50 year old has a structural scoliosis or a functional one? I believe that the processis not really for over 30 patients with structural scoliosis.
    Highly doubtful that anyone would operate on someone with a functional scoliosis.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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    Surgery 2/10/93 A/P fusion T4-L3
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  8. #8
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    Quote Originally Posted by LindaRacine View Post
    Highly doubtful that anyone would operate on someone with a functional scoliosis.
    I agree with that but there is one notable except... King14 had 2 functional curves (no structural curve) and had her T curve fused anyway to hopefully prevent her lumbar from becoming structuralized.

    I understand why she had to do it but that is one crazy case.
    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. #9
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    Quote Originally Posted by Pooka1 View Post
    I agree with that but there is one notable except... King14 had 2 functional curves (no structural curve) and had her T curve fused anyway to hopefully prevent her lumbar from becoming structuralized.

    I understand why she had to do it but that is one crazy case.
    I think most surgeons wouldn't touch something like that.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  10. #10
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    Quote Originally Posted by LindaRacine View Post
    I think most surgeons wouldn't touch something like that.
    That's what I thought! That is one crazy case. I guess they were just trying to drive the lumbar straight to save the discs.

    It is the only instance of a functional curve being fused that I have heard about beyond, of course the madness of surgeons routinely fusing false doubles through the lumbar. Not sure why that is not patent malpractice or if it is done much any more. The paper I came across showing all the patients who only had the T curve of a false double fused were doing fine about 2 decades out. My one daughter dodged that bullet. I didn't know enough to refuse fusing the functional lumbar and so just got lucky that the surgeon doesn't do 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."

  11. #11
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    I just wanted to clarify is case Flerc is looking ( not that I have much faith in Flerc actually properly reading anyone's post!) that although VBT and VBS is available for adults . It is recent adults i.e. young adults in their 20s. My original point for which I was lambasted by flerc was that I cannot find instances of mature adults ( except the one 50 year old ) who have had or are considered for these techniques.

  12. #12
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    Quote Originally Posted by burdle View Post
    I just wanted to clarify is case Flerc is looking ( not that I have much faith in Flerc actually properly reading anyone's post!) that although VBT and VBS is available for adults . It is recent adults i.e. young adults in their 20s. My original point for which I was lambasted by flerc was that I cannot find instances of mature adults ( except the one 50 year old ) who have had or are considered for these techniques.
    Good point. It is VERY experimental in adults at this point with only one patient.

    I think King14 who was in her early 30s with two large very flexible NONSTRUCTURAL curves might have been a candidate for VBT in adults. She bent out both curves A LOT! It was crazy! It looked like a typical double major but she bent both curves out! Breath-taking.
    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."

  13. #13
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    Quote Originally Posted by burdle View Post
    Hi - do you know if this 50 year old has a structural scoliosis or a functional one? I believe that the processis not really for over 30 patients with structural scoliosis.
    Hi Burdle,

    I asked that question and was told this particular patient had been diagnosed years ago with structural adolescent idiopathic scoliosis. She is now an adult, age 50, at the time of VBT. Hope this is helpful. Also, can you please explain exactly what you mean by functional scoliosis? 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/

  14. #14
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    Quote Originally Posted by mariaf View Post
    Hi Burdle,

    I asked that question and was told this particular patient had been diagnosed years ago with structural adolescent idiopathic scoliosis. She is now an adult, age 50, at the time of VBT. Hope this is helpful. Also, can you please explain exactly what you mean by functional scoliosis? thanks.
    In the UK a non-structural Scoliosis is often referred to as 'functional' it is usually caused by another issues - e.g. an accident or a leg length discrepancy, whereby if you correct the underlying issue the scoliosis often disappears.

  15. #15
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    Thanks, Burdle. Neither myself nor the patient was familiar with the term. I guess it's not used as much in the U.S.
    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/

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