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Thread: Scott's Vertebral Body Tethering Thread

  1. #151
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    Quote Originally Posted by burdle View Post
    Kids say they want to be all sorts of things when they are kids and change their minds later. VBT will allow EVERYONE to change their minds later.
    That's exactly why we picked VBT. It keeps Scott's options open, 10, 20, 30, 40, 50 years from now.

  2. #152
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    Quote Originally Posted by burdle View Post
    I would argue that the least invasive option and the option that preserves the most natural movement of the spine has got to be the preferred option when it comes to surgery. We may not feel we have lost ROM and we may not all be dancers or gymnasts but the spine was meant to move freely . No surgeon should ever say to someone - well you don't need that sort of movement because you are not a dancer etc. so you wont miss it. I don't think being a dance or a gymnast should really be part of anyone's decision to make about their child when it comes to experimental procedure. It is either safe or it isn't. It either works or it doesn't. Kids say they want to be all sorts of things when they are kids and change their minds later. VBT will allow EVERYONE to change their minds later.
    I understand those points.

    But when Boachie and our surgeon claim a one and done operation versus an unknown need for second surgery with tethering, do you think that matters? Maybe they are wrong but there is some reason they are saying it directly to patients at least in the case of my daughter. Couple that with no sense of lost ROM and the decision is a little different I think. Even after she bent to the side but before I bent, she thought that was normal and her fused spine does not impede her just like I deliberately don't move my spine in the most physical activities I do (HIIT and dressage). I think departure from neutral spine in activities is how people hurt their discs. Posture matters and fusion/tethering help with that in the thorax it seems. Maybe I would not have herniated two discs if I had better posture (i.e., neutral spine and not letting it depart from that), especially on a horse and most especially in sitting trot. Who knows.
    Last edited by Pooka1; 11-21-2018 at 09:34 AM.
    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. #153
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    Disc thoughts...

    There are young people in their mid 20's (without scoliosis), that herniate their discs....(Everybody asks, what DID you do?) and then there are elder scoliosis patients (50 years older) with 90 degree un-fused curves that never herniated their discs....(one extreme to the other)

    You can take spinal discs and put them through unbelievable abuse. How many jumps, how many hard bumps have I hit skiing for over 50 years? Millions.....And some of my crashes were equipment and body breaking crashes. It took 39 years of this abuse for my lumbar discs to finally herniate in a 70 degree curve which is just incredible. Its hard to believe. There is no man made material that can withstand this kind of abuse. I guess it proves that we really do heal and heal at different rates at different ages. Think about what happens to lumbar discs when weightlifters dead lift 1000#.....Neutral spine sleeping exerts approx 12# of pressure, bending forward increases to a few hundred pounds. Weightlifter lumbar discs must experience several tons of pressure! They also lift and train for many years! If a spine surgeon has a bad dream, this might be it!

    Lumbar discs are in first place as far as herniation's are concerned. My lumbar's were the first to go. And you think that weight and gravity plays a strong part until your neck herniation's happen....C5-C6, C6-C7 which are in a close 2nd place for herniation's....So much for the gravity idea.

    One would also think that the disc in a severe curve would collapse or degenerate quicker than in a normal spine. My neck has no scoliosis. Forget that one also...

    I lived an extremely physical life, I was always active.....Discs degenerate for some reason, age related, genetics, loss of water, etc. I don't know if they are really sure why this happens???

    PJK stats also increase after age 55. Incidence of PJK runs 17-62% over 14 studies which is quite a variance in disc integrity.
    https://www.ncbi.nlm.nih.gov/pubmed/26994925

    I would place the most value in tethering in the preservation of the spinal cord and nerves. Maintaining the CNS. Brain and cord.

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #154
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    Quote Originally Posted by titaniumed View Post
    I would place the most value in tethering in the preservation of the spinal cord and nerves. Maintaining the CNS. Brain and cord.

    Ed
    You might be right that this is the actual reason versus any issue with ROM when talking the thorax.

    If mere poor posture can possibly cause disc issues as it seems in my case then it is an open question what tethering will do to discs unless perhaps the tethering locks them more into neutral spine which it might. If so then I think that will be the reason it works. And seeing the pig spine studies, I also consider tethering, in addition to fusion, a cheat in dressage because it limits the ability to come out of correct position.

    I understand why people are focused on ROM. Nobody wants to lose ROM. But at present, it is an open question whether the kids in the one and done fusion category would necessarily better tethered than fused. The ROM in tethering is extremely abnormal. It is less than even staples in some planes. It is not just a muted form of regular ROM. That's why Lonner sat out five years. Spines are not meant to be fused or tethered. Tethering could turn out to be very damaging requiring a later fusion. Leaving options open is another way of saying a second operation might be needed.

    As a parent who:

    1. was told my child would be one and done (ends at or above L1, lumbar straightens),

    2. later has my child (incorrectly) deny she lost ROM with her fusion which is a way of saying she doesn't miss any ROM she lost,

    3. has no data on the out years of tethering,

    4. knows there is lost ROM also with tethering and abnormal ROM with tethering,

    the decision between fusion and tethering is not so slam dunk.

    If I had a child who was not one and done or had lumbar involvement, tethering is the obvious choice. I would have okayed tethering my second kid because her lumbar is not straight and I suspect she is looking at further surgery in the out years, hopefully tethering the lumbar.

    All this hinges on the surgeon knowing what they can and can't accomplish before surgery. I don't know how sure they are ahead of time but I suspect they are fairly sure because the lumbar tends to match the fused thorax. So my one kid was hyper-corrected in the thorax and her lumbar hyper-corrected itself. The other kid was left with a ~25* fused thoracic curve and what do you know her lumbar corrected only to about that. So I think they know.

    Also, I did not know ahead of time that my kid would deny losing ROM. Obviously whatever she lost she does not use or need. I only know that after the fact of fusion. Maybe I could have learned that if I talked to some fused kids.
    Last edited by Pooka1; 11-21-2018 at 10:31 AM.
    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."

  5. #155
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    Scott is cooking Thanksgiving dinner with his mom right now. To the naked eye he moves the same way he always has. He says he can't tell.

    If Scott loses some ROM until the tethers break in the next few years it's no big deal. They don't last very long.

  6. #156
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    Scoliosis is all about timing.....I think in my case, the timing was ok....10 years sooner would probably have been better. Scott's timing for tethering seems perfect. We will find out in just a few years....he needs to make it to around age 18 without tether breakage and he should be in great shape.

    When I think about these surgeries, no matter what they are.....I think about "Do nothing" and how that "can be" a wise choice. Of course, each individual case differs, and do nothing can also be the wrong choice. Scoliosis decisions sure do vary from being an easy decision to extremely difficult. Surgical candidates and their parents need to be aware of possible complications and ramifications of surgery and its time frames. At age 49, I told my surgeon that I didn't want to come back, I wanted one stop shopping, fusing to the pelvis was the choice. It was a no brainer in my case, but for those around age 55, the degeneration process becomes a factor that needs careful thought. (talking about the lumbars)

    Age related degeneration factors cause all sorts of havoc with our bodies, and it varies with each individual for unknown reasons. Deciding on fusion, or tethering, can or cannot come with a lifetime guarantee. Stats will give odds on a group, a procedure or process, but nothing is 100% If we didn't have age related degeneration, life would be good.

    Happy Thanksgiving everyone!

    Personally I would scrap the salad this year. CDC E-Coli warnings are out!
    https://www.cnn.com/2018/08/01/opini...lly/index.html

    https://www.cnn.com/2018/11/20/healt...cdc/index.html

    Russian roulette dressing.....that's a good one!

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  7. #157
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    Quote Originally Posted by Dingo View Post
    Scott is cooking Thanksgiving dinner with his mom right now. To the naked eye he moves the same way he always has. He says he can't tell.

    If Scott loses some ROM until the tethers break in the next few years it's no big deal. They don't last very long.
    I am not surprised your son feels normal. Other than contortionists and dancers, I seriously doubt any kid tethered in the torso will notice any difference given fused kids don't notice. That may be why they leave the tethers in... it doesn't matter and it avoids another surgery to remove it.
    Last edited by Pooka1; 11-22-2018 at 02:02 PM.
    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."

  8. #158
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    Quote Originally Posted by Pooka1 View Post
    I am not surprised your son feels normal. Other than contortionists and dancers, I seriously doubt any kid tethered in the torso will notice any difference given fused kids don't notice. That may be why they leave the tethers in... it doesn't matter and it avoids another surgery to remove it.
    One of the first things Dr. Newton told me about the tethers was that over time every tether would break. Unless something is wrong there is no need to take them out. They'll go away on their own.

  9. #159
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    Quote Originally Posted by Dingo View Post
    One of the first things Dr. Newton told me about the tethers was that over time every tether would break. Unless something is wrong there is no need to take them out. They'll go away on their own.
    They are expected to break at every level?

    I have come full circle on this issue of ROM with tethers. My thinking has changed with each new piece of evidence.

    After seeing the pig study, I thought for sure T-tethered kids would notice a loss in ROM. But then my fused kid (incorrectly) claimed she has no loss in ROM. Subjectively she has lost no ROM. Objectively she has lost ROM. Then I found a paper showing people do have a large ROM in their thorax. Then I had to square that with what my kid was claiming. That's when I realized people must not be using much of their T ROM. Then I realized in my physical activities I am deliberately trying to stay in neutral spine to protect my lumbar discs and trying to avoid ROM in my thorax. I think this is working because I have not injured a disc since doing this.

    Here is another data point... my daughter's friend is also fused but I think it goes below L1. She has pretty good ROM to one side but not much in the other. So she knows she lost ROM because she noticed the uneven ROM side to side. She said at first it felt like a log in her back but once she got used to it, she is not now bothered by being fused. My daughters claim they feel normal. My two daughters and their friend have better posture that I used to have which I think is due to being fused in the thorax. Objectively they are not normal but subjectively they feel normal which is what counts. I think all these tethered kids are going to feel totally normal too.
    Last edited by Pooka1; 11-23-2018 at 11:59 AM.
    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."

  10. #160
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    Quote Originally Posted by Dingo View Post
    Correct. His belief was that over time every tether would break. He did not say how long this would take.
    It was one of the first things he told me about tethering. I was taken back because it was the first time I had heard that.

    In this study of 17 children they began to snap around the 18 month mark.
    Anterior Spinal Growth Tethering for Skeletally Immature Patients with Scoliosis: A Retrospective Look Two to Four Years Postoperatively.
    I think he is saying every tether will break in at least one place. Did he say if 10 levels were tethered that it would break at all ten levels?
    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. #161
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    Quote Originally Posted by Pooka1 View Post
    They are expected to break at every level?
    Correct. His belief was that over time every tether would break. He didn't say how long this would take.
    It was one of the first things he told me about tethering. I was taken back because it was the first time I had heard that.

    In this study of 17 children the tethers began to snap at around 18 months.
    Anterior Spinal Growth Tethering for Skeletally Immature Patients with Scoliosis: A Retrospective Look Two to Four Years Postoperatively.
    Eight (47%) of the patients had a suspected broken tether.
    A more robust implant would be ideal, although an implant with a fatigue life of decades rather than years seems unlikely. Further development is necessary.

  12. #162
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    Quote Originally Posted by Pooka1 View Post
    I think he is saying every tether will break in at least one place. Did he say if 10 levels were tethered that it would break at all ten levels?
    Yes. It was his belief that every tether would break.

    I should add that it's not one long tether strung between anchors. It is individual tethers attached by anchors.

    In Scott's case he has 8 screws and 7 individual tethers between them.
    Each tether is able to hold about 650 pounds when it is new.

  13. #163
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  14. #164
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    Quote Originally Posted by Dingo View Post
    I should add that it's not one long tether strung between anchors. It is individual tethers attached by anchors.
    According to these sites, it is "a" meaning one long tether that has to be tensioned and anchored at each level. That rules out individual segments...

    https://services.nhslothian.scot/sco...ng-(AVBT).aspx

    https://www.spineuniverse.com/profes...ent-idiopathic

    https://sharing.mayoclinic.org/2016/...le-and-active/

    Also if you look at the actual tethers on models, they all appear to be one long cord...

    https://www.google.com/search?q=vert...FjSXKOu0knC4M:

    Where did you get the idea it is many individual tethers between the anchors as opposed to one long tether that is tensioned?
    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."

  15. #165
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    Quote Originally Posted by Dingo View Post
    I don't see where that is written. Also it sounds like either the tether broke in 3 places or broke and was replaced 3 times.
    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."

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