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Thread: Not sure what to do

  1. #16
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    Quote Originally Posted by flerc View Post
    killing animals to obtain that kind of conclusions.. I hope they didn't do suffer them too much.
    They suffer immensely on factory farms. As Paul McCartney said, if slaughterhouses had glass walls there would be more vegetarians/vegans. I can only hope they got these spines from those poor animals and not animals killed only for these experiments.
    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."

  2. #17
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    Quote Originally Posted by txgal View Post
    No, he didn't. I did not think adults were candidates.
    The bottom line might be that there is only one or maybe one more person by now (her sister) near your age who has been tethered. That's better than none but it is only one or two.

    Maybe you can join that Facebook group and find out what THOSE women were told versus what younger patients are told. That is what is most likely going to be relevant to you, not a growing child who is being tethered for progression only which appears to be 99.999% of the patients to date. You can ask:

    1. VBT effectiveness for pain versus progression
    2. Kyphosis limits on VBT
    3. Bone density limits on VBT
    4. Curve length limits on VBT

    With only one or two patients in your category, it's going to be shooting in the dark in any case. But that doesn't matter because tethering is not permanent and doesn't cut you off from other treatments if it doesn't work. Certainly I would look for a surgeon to tether my daughters lumbars if they ever have trouble below their fusion and would hope to find one to do it.
    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."

  3. #18
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    Quote Originally Posted by Pooka1 View Post
    They suffer immensely on factory farms. As Paul McCartney said, if slaughterhouses had glass walls there would be more vegetarians/vegans. I can only hope they got these spines from those poor animals and not animals killed only for these experiments.
    They should to live and die in farms, not factory farms that should to be forbiden.. involution of mankind don't stops.

  4. #19
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    Quote Originally Posted by Pooka1 View Post
    But that doesn't matter because tethering is not permanent and doesn't cut you off from other treatments if it doesn't work. Certainly I would look for a surgeon to tether my daughters lumbars if they ever have trouble below their fusion and would hope to find one to do it.
    As I know it may be permanent. It is not irreversible as fusion.
    Surely it may be used in your daughter, a friend whose daughter's pedicles where broken few months after fusion and surgeons recommended her to have another surgery but now in the lumbar zone, talked with Vbt surgeons and said her that is possible.

  5. #20
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    Surely the best you may do in this sense is to keep her lumbar zone very flexible, I think that in all cases is an important requirement for Vbt. To achieve that goal I think that Gpr is the best.

  6. #21
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    Quote Originally Posted by Pooka1 View Post
    The bottom line might be that there is only one or maybe one more person by now (her sister) near your age who has been tethered. That's better than none but it is only one or two.
    With only one or two patients in your category, it's going to be shooting in the dark in any case.
    Why? What could happens not happening in teens? Even teens close to skeletal madurity and there are many cases as I know. If the spine si flexible which could be the big difference?. If you know that your gun can kill a cat why would you believe it cannot kill a dog?

  7. #22
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    Apr 2011
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    Thank you

    Quote Originally Posted by Pooka1 View Post
    The bottom line might be that there is only one or maybe one more person by now (her sister) near your age who has been tethered. That's better than none but it is only one or two.

    Maybe you can join that Facebook group and find out what THOSE women were told versus what younger patients are told. That is what is most likely going to be relevant to you, not a growing child who is being tethered for progression only which appears to be 99.999% of the patients to date. You can ask:

    1. VBT effectiveness for pain versus progression
    2. Kyphosis limits on VBT
    3. Bone density limits on VBT
    4. Curve length limits on VBT

    With only one or two patients in your category, it's going to be shooting in the dark in any case. But that doesn't matter because tethering is not permanent and doesn't cut you off from other treatments if it doesn't work. Certainly I would look for a surgeon to tether my daughters lumbars if they ever have trouble below their fusion and would hope to find one to do it.
    Thank you for the info. This is promising and maybe an option at some point.

  8. #23
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    Sep 2011
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    Quote Originally Posted by 3sisters View Post
    Certainly, I would encourage anyone to investigate VBT before committing to fusion. There are some general guidelines, but they are not always firm or fast. Plus, parameters are changing quickly, thankfully. So, sometimes waiting is a good thing.

    Many surgeons who do not perform VBT do not suggest it; however, about 30 worldwide are performing it in countries besides the US to include NZ, Canada, Spain, India, Turkey, and Germany is starting up now.

    Most surgeons prefer low Risser patients, especially Risser 0-1. However, many are adding older teens with no growth remaining and two are now accepting 'senior' patients. There have been more than one in their 20s AND even 50s. For the most senior patients, bone density is important. That doesn't mean it is a show-stopper, but it might have to be improved with FORTEO or similar.

    Sometimes hyperkyphosis makes VBT contra-indicated, but not always (and 48 is not very 'hyper' so I would ask before writing it off as an option.)

    Originally, VBT was a thoracic procedure. Now, it has been extended to cover T5-L4 as necessary. For some extentuating circumstances, it can be used in combination with a selective fusion. This might be when a structural curve starts higher than T5/ T4, or if there are other issues that the surgeon needs to address. Patients maintain most of their mobility, especially in their lumbar area.

    Some people might seek VBT for moderate curves that accompany pain; it has shown positive results in that area for many. Ideally a VBT curve is between 35 and 70, but much larger curves have been tethered.

    If anyone feels this might be something they want to consider for their child or themselves, feel free to ask to join a facebook VBT forum I co-admin with Maria F. It is called Scoliosis Tethering (VBT) Support. I do not come to the NSF forums often, but wanted to give a bit of an update.

    Thank you for this information. I am interested in the 'combination' of VBT and fusion. Like txgal I would have to be fused to Sacrum. However mine would have to start at C1. So VBT might be an option for me?

    I have curves way over 50 degrees and am a mature adult. Do you have anyone on your Facebook group in the same condition (is or was) as me?

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