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Thread: Scott's Vertebral Body Tethering Thread

  1. #61
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    Quote Originally Posted by burdle View Post
    And yet he calls it National Scoliosis Forum? And Jo does sit on bodies set up for Scoliosis I think he advises on SOSORT? Trouble is that scoliosis is so neglected in its treatment that it allows individuals to go far...
    I think you are correct about being associated with SOSORT. But it must be as a patient advocate because the guy is an MBA. He appears to be unlettered in any science related to scoliosis. I am unlettered in this field. So are most people. The only lettered person I have ever seen on this forum was the muscle physiology PhD person. I think there was a bone biology PhD at some point but I don't know if they worked on scoliosis.

    I spoke to Joe once and he is very knowledgeable. He is the one who told me there are only three major groups around the world working on scoliosis etiology. He runs the group as he sees fit. And because I don't agree with some aspects, I have never contributed monetarily. If he ran a tight ship on the forum I certainly would contribute monetarily.
    Last edited by Pooka1; 09-17-2018 at 08:58 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."

  2. #62
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    Quote Originally Posted by Pooka1 View Post
    I think you are correct about being associated with SOSORT. But it must be as a patient advocate because the guy is an MBA. He appears to be unlettered in any science related to scoliosis. I am unlettered in this field. So are most people. The only lettered person I have ever seen on this forum was the muscle physiology PhD person. I think there was a bone biology PhD at some point but I don't know if they worked on scoliosis.

    I spoke to Joe once and he is very knowledgeable. He is the one who told me there are only three major groups around the world working on scoliosis etiology. He runs the group as he sees fit. And because I don't agree with some aspects, I have never contributed monetarily. If he ran a tight ship on the forum I certainly would contribute monetarily.
    I would suggest his information is now out of date regarding the etiology. It is a shame about the forum being run like this. the facebook group admins do appear to have regular contact with VBT suegeons but it is anecdotal and again the people recieving the mesages are unlettered and unscientific.

  3. #63
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    Quote Originally Posted by burdle View Post
    I would suggest his information is now out of date regarding the etiology. It is a shame about the forum being run like this. the facebook group admins do appear to have regular contact with VBT suegeons but it is anecdotal and again the people recieving the mesages are unlettered and unscientific.
    He told me about the three groups several years ago. Are you saying there are more or less major groups now studying etiology?

    I agree the problem with filtering information through patients and parents is overwhelming. I am a trained researcher but not in any field related to scoliosis. So I am a lay person and I have definitely misunderstood things our surgeon told me despite my best efforts to understand. There are things written on this forum that people claim their surgeon said that I would be $1,000 were never said. These people are just doing the best they can to understand and failing like I did.

    Some things are common sense like if you put a tight tether on the side of a spine such that it can straighten a structural curve, what are the chances you can bend at all against that tether? You don't need a surgeon to tell you 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."

  4. #64
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    Quote Originally Posted by titaniumed View Post
    How is Scott feeling now? What is he saying?
    This Wednesday will be 7 weeks.

    1) His 3 main incisions are tiny lines. The chest tube incision is much larger. Its a line with a dime sized circular scar in the middle of it. Being a 14 year old boy Scott could care less about any of these. haha!
    2) He feels great! Sitting or standing for long periods can result in some fatigue but its pretty minimal.
    3) He has to wear his brace for another 5.5 weeks but he doesn't mind because he doesn't have to sleep in it.
    4) His spine is straight as a board. I know that on the inside he still must have a curve but it's no longer visible from the outside. Right before surgery his spine looked like a roller-coaster.
    5) Although his motion may have been impacted he can't tell. Everything feels the same. Maybe when his brace is off and he becomes more active he'll be able to tell. Over the long term I'm not sure if it matters because eventually all of the tethers will snap or come loose.

    We can't wait for his 6 month visit, although I believe based on the chart at the bottom of (this page) his 1 year visit will be the most informative.
    Last edited by Dingo; 09-23-2018 at 11:44 AM.

  5. #65
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    Understood on the scars....They are battle wounds. Funny, when someone shows me a 12 inch scar, I usually reply with "I have a few scars too". The long full fusion scars do hide quite well. If you don't know to look, your not going to see them.

    When you brace, its all about the brace, your mind is on the brace. .....and it offers protection. When he takes it off, he is going to have to move slow since muscles weaken, and you lose your protection from fast or unexpected moves. Things like stepping off a curb unexpectedly can cause a lot of damage. (For anyone)

    I would not bet money on the tethers snapping.... As soon as the tether breaks were reported this was addressed as a serious matter and they made changes right away. The hardware folks do NOT want this happening. Surgeons can present a worse case scenario just in case something happens. I had this happen to me with my curve correction. And when things go right, the patient is very pleased.

    Scott is lucky. He is lucky to have a parent like you who paid attention to even the smallest of curves as a small child. Sharon is also a good parent.

    Don't you go back at 6 months? They will shoot an x-ray. Full fusion patients have to go in often during recovery.....I forget, but I did hear the words at one point "Where have you been?"

    It reminded me of Dr Albert Schweitzer's 1952 Nobel concept of ethics, "Reverence for Life", that good comes from "maintaining, assisting and enhancing" life.

    Being a doctor, he set up a hospital in Gabon, Africa in 1913, when medical technology was quite a challenge. (An interesting story)

    https://en.wikipedia.org/wiki/Reverence_for_Life


    Ed
    49 yr old male, now 60, 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

  6. #66
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    Quote Originally Posted by titaniumed View Post
    Understood on the scars....They are battle wounds. Funny, when someone shows me a 12 inch scar, I usually reply with "I have a few scars too". The long full fusion scars do hide quite well. If you don't know to look, your not going to see them.

    When you brace, its all about the brace, your mind is on the brace. .....and it offers protection. When he takes it off, he is going to have to move slow since muscles weaken, and you lose your protection from fast or unexpected moves. Things like stepping off a curb unexpectedly can cause a lot of damage. (For anyone)

    I would not bet money on the tethers snapping.... As soon as the tether breaks were reported this was addressed as a serious matter and they made changes right away. The hardware folks do NOT want this happening. Surgeons can present a worse case scenario just in case something happens. I had this happen to me with my curve correction. And when things go right, the patient is very pleased.

    Scott is lucky. He is lucky to have a parent like you who paid attention to even the smallest of curves as a small child. Sharon is also a good parent.

    Don't you go back at 6 months? They will shoot an x-ray. Full fusion patients have to go in often during recovery.....I forget, but I did hear the words at one point "Where have you been?"

    It reminded me of Dr Albert Schweitzer's 1952 Nobel concept of ethics, "Reverence for Life", that good comes from "maintaining, assisting and enhancing" life.

    Being a doctor, he set up a hospital in Gabon, Africa in 1913, when medical technology was quite a challenge. (An interesting story)

    https://en.wikipedia.org/wiki/Reverence_for_Life


    Ed
    according to the folks of Facebook for VBT the tethers do snap between the vertebra but this does not have to cause a problem.

  7. #67
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    Quote Originally Posted by burdle View Post
    according to the folks of Facebook for VBT the tethers do snap between the vertebra but this does not have to cause a problem.
    Well I am happy to hear it doesn't necessarily cause a problem. This is still experimental and the surgeons are having to guess at the appropriate tension. But it is still the best hope for avoiding fusion at this point in my opinion.
    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. #68
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    Quote Originally Posted by titaniumed View Post
    It reminded me of Dr Albert Schweitzer's 1952 Nobel concept of ethics, "Reverence for Life", that good comes from "maintaining, assisting and enhancing" life.
    From your link about Dr Albert Schweitzer,
    "Having described how at the beginning of the summer of 1915 he awoke from some kind of mental daze, asking himself why he was only criticizing civilization and not working on something constructive."
    This is exactly on the money. Every person on planet earth can see that the world is a mess. Most people complain and never attempt to find a single, actionable solution. Fortunately a few people are proactive and work hard to to solve the world's problems. These people are heroes. To me the people that invented tethering are heroes. They could have simply made money on fusion surgeries but instead they worked quietly for decades to make something better. They probably didn't make a single extra $ for choosing this path. They did it because it was right.

  9. #69
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    Quote Originally Posted by titaniumed View Post
    Don't you go back at 6 months? They will shoot an x-ray. Full fusion patients have to go in often during recovery.....I forget, but I did hear the words at one point "Where have you been
    Yep we go back for a checkup every 6 months until he is done growing. In Scott's case that is probably until he is 18. For most boys it would be 17.

  10. #70
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    Quote Originally Posted by titaniumed View Post
    I would not bet money on the tethers snapping.... As soon as the tether breaks were reported this was addressed as a serious matter and they made changes right away. The hardware folks do NOT want this happening. Surgeons can present a worse case scenario just in case something happens. I had this happen to me with my curve correction. And when things go right, the patient is very pleased.
    Dr. Newton was very cautious overall but he was straight forward about the tethers. He said that over time probably every single tether would break.

    1) If they snap before Scott is done growing it means an extra surgery to replace the busted tether.
    2) If they snap after he is done growing no big deal.

    The first little girl that had tethering was closely monitored. After 4 years her curve went from 40 to 8. This is from her report,

    While the concave side grew 2.4 cm, the convex side grew 1.6 cm, demonstrating the effect of tethering on the convex side.
    Although they weren't absolutely positive at the time if her tethers broke after that point it wasn't a huge deal because her spine had already grown straight.

    To me this is almost like magic!
    Last edited by Dingo; 09-24-2018 at 09:52 AM.

  11. #71
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    They still need to figure out why the solid tethers are breaking. This problem is solvable.

    I wonder if they have thought about using Dyneema? Its a fiber, used in a woven cord.... This gets away from using solid material.

    I am assuming the breaking happens at the screw heads. (perhaps a new floating screw head)

    https://www.youtube.com/watch?v=spdyIKro-nk

    https://www.dsm.com/markets/medical/...pe-fibers.html

    Ed
    49 yr old male, now 60, 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

  12. #72
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    Quote Originally Posted by titaniumed View Post
    They still need to figure out why the solid tethers are breaking. This problem is solvable.

    I wonder if they have thought about using Dyneema? Its a fiber, used in a woven cord.... This gets away from using solid material.

    I am assuming the breaking happens at the screw heads. (perhaps a new floating screw head)
    I agree. We are being E S P E C I A L L Y careful until age 18 simply because we don't want another surgery.

    But on the flip side I'm glad that sooner or later they're all going to snap because it returns him to 100% mobility.

    So in a perfect world the tethers would be unbreakable until after growth was done. And then maybe they could be released from the outside or they would dissolve after 5 or 10 years or something like that.

  13. #73
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    UHMW is not going to degrade....I think of the birds they find with various plastics in their stomachs....(sigh) Do birds have strong stomach acids? Probably not.
    https://www.youtube.com/watch?v=Mh-bJetDYqM

    I agree on being especially careful. I was one who walked on eggshells for around a year in my recovery as I was worried about pseudarthrosis or non-union. Fusion patients need to fuse or rods break. I guess if Scott can re-model straight and have the tethers conveniently break, that all sounds good. Its the adults that need an unbreakable tether....I like the Magec system concept, some sort of adjustable tether system would be the cats meow.

    One idea is that since they enter the vertebral body from the side, they "could" use a larger screw....which would give more room for re-engineering the head (attachment point) of the screw. Fishing lines never run around sharp corners.....fishing pole eyelets always have a radius on the inner diameter to keep the fishing line stresses down. A slightly larger screw head offers more room to introduce an inner diameter radius thus reducing stress points on the tether.....

    On this subject of tether stress, bending forward seems like that would be the best, easiest, or most probable way to do this. Bending forward is probably the most damaging thing we can do to our spines. Fused, unfused, and tethered. Bending forward is also a motion that we do easily with no regard to our spines. Get Scott a long handled shoe horn, mine is 24" long. My sneakers are always tied...

    Mobility? What is that? I shouldn't joke about this since people freak out about this, but in reality, its not as "overly critical" as people make it out to be. I don't have any issues due to my adaptability and positive attitude. You always make the best of each situation, it requires thinking differently. For example, using a shoe horn is the easier way of putting shoes on, so its actually a bonus.

    Dingo, I am glad you liked the Schweitzer story. Here is a You Tube documentary on him. His first operating room was in a chicken coup!
    https://www.youtube.com/watch?v=Wv0tK5VM4Fc

    And it makes us think about Dr Boachie who went back to Ghana to set up his hospital....I hope everyone understands....

    Ed
    49 yr old male, now 60, 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

  14. #74
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    Dr. Newton published a study on October 3rd that analyzed the longterm results of VBT in 17 patients. The procedures were performed from 2011 to 2013 and consisted of children with larger, less flexible curves. Maybe because VBT was so new and experimental in 2011 they initially used it for tougher cases.

    But in any case holy cow tethers snapped in half the kids!
    Be very careful if you have had a tethering procedure because it appears that every one of the tethers is going to break and you want them to last as long as possible.

    I added the study with the internal data to the research section.
    Tethers commonly break 1 to 2 years after VBT procedures
    Last edited by Dingo; 10-04-2018 at 06:55 PM.

  15. #75
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    Also from the study:

    Radiographic and Clinical Measurements
    Preoperatively, all (100%) of the patients were at Risser stage 0; the triradiate cartilage of the acetabulum was open in all but 1 patient. The mean bone age was 11.8 1.7 years. Hand radiographs were available for Sanders staging for 94% of the cohort, with all patients in stages 1 to 4. The patients, on average, grew 15.2 5.4 cm over the study period (mean height, 150.6 9.1 cm preoperatively and 165.8 8.5 cm at latest follow-up). Many still had substantial growth remaining at latest follow-up, with 47% at Risser stage 0 or 1 and triradiate cartilage closed in all but 3 patients. Preoperatively, the mean thoracic curve magnitude was 52 10 (range, 40 to 67), with 48% 14% flexibility on side-bending radiographs. Themean lumbar curve was 33 10. Both the thoracic and lumbar curves showed significant initial correction (p ≤ 0.001) and continued to decrease until ;18 to 24 months, before increasing slightly over the remainder of the study (Fig. 1 and Table I). At the latest follow-up, the average percent correction of the tethered thoracic curve was 51% 35% (range, 5% to 118%). Significant reductions were seen from the preoperative to the first postoperative evaluation in the coronal plane (upper thoracic curve and thoracic curve, p ≤ 0.001; lumbar curve, p = 0.001) and in the thoracic ATR (p = 0.043) (Table I). This correction was maintained at the latest follow-up. There were no significant differences in T2 to T12 kyphosis or lumbar ATR from the preoperative to the first postoperative evaluation (p = 0.17 and p = 0.18) or from preoperatively to the latest follow-up (p = 0.266 and p = 0.093). Additionally, no significant differences were found in any deformity measurements between the first postoperative evaluation and the latest follow-up (p > 0.3 for all).

    Discussion
    The average preoperative thoracic curve among our cohort was 52, which decreased to 31 by the first postoperative visit. This initial decrease was due to the tension applied to the tether with correction through the compressed convex-side disc spaces. On average, progressive correction was gained during the first 24 months after the initial procedure, particularly during the 6-month to 1-year time period. After 18 months, however, the results were less consistent, with some curves beginning to progress, some continuing to correct, and some overcorrecting. The 1 to 2-year time period seemed to mark a key point, with 4 tethers breaking, 3 patients undergoing tether removal or revision, and 1 patient having continued lumbar curve progression to the point of requiring posterior spinal fusion. It is essential that future studies capture longer-term follow-up after ASGT, as the outcomes appeared to be more varied beyond 18 months. In general, the average correction observed in our study was not as substantial as that in previous reports. This difference may be related to our cohort having a larger average preoperative thoracic curve (52 versus 44) with less flexibility (48% versus 57%) than the 2-year cohort described by Samdani et al.. Given the relatively young age and remaining growth of our cohort at surgery (94% with open triradiate cartilage), there is both greater potential for correction and greater potential for adding-on or progression of the deformity.
    Last edited by Dingo; 10-04-2018 at 12:13 PM.

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