Page 2 of 13 FirstFirst 123412 ... LastLast
Results 16 to 30 of 188

Thread: Scott's Vertebral Body Tethering Thread

  1. #16
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,058
    Thanks AILEE! 8-)

    It's good to see that your daughter's curve stopped at 25! I hope that in time Scott can get back to that number because that's when he still felt good.

    Looking back Scott did really well until his large, growth spurt started. After that nothing seemed to help.

  2. #17
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,978
    Quote Originally Posted by Dingo View Post
    Scott never had pain until he hit age 14. After that he began to have pain in the middle of his back and as the year went on it got worse. Walking and standing for long periods became difficult. The day before surgery when we were discussing Fusion vs. Tethering he told me that something needed to be done because the pain was getting worse. Hearing that was heart wrenching.
    Since Scott has known about scoliosis since he was small, I am guessing that it wasn't too much of a shock when the pain and the progression hit....a curved spine that doesn't hurt, doesn't really register until there is pain. The reality of it all finally set in, thus the request to do something (surgery). You have to be a courageous person.....that he is.

    You have done an excellent job with him and also with documenting the torso rotation history here on this forum. Those efforts were a good shot, I wouldn't worry about chalking this off as time wasted, its might seem like that, but its worth exploring non surgical methods...its something many of us have to do.

    I am really hoping that you keep posting Scott's journey, we are EXTREMELY interested in following his outcome. There are not many male testimonials, we are a rare bunch, and especially a tethering testimonial....

    With Scott's story, I think back to the days when I was his age. I was a passenger (without seat belts) in a car accident on 4/9/74, I was 15 and 4 months. Had trouble walking after that impact, we hit a tree in a 67 Chrysler Newport at 25MPH, and the bark came to the dashboard. 6 foot hood, 7 foot crumple zone. 1974 simple crash science. Ha ha Went and saw a MD at his home, no x-rays were shot, he said, "you have scoliosis". I had a 50 degree "S" curve in my back. The lumbar hump was noticed just a few months before that accident. It all came so sudden. I have this feeling that scoli males during age 14 need to be watched like a hawk by a scoliosis surgeon....On the 14th birthday....not a day later. Ask Dr Newton about this.

    After he heals up, (should be quick) would love to see some bending photos and videos. Let us know when Dr Newton releases him.

    Ed
    Attached Images Attached Images
    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

  3. #18
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,058
    Quote Originally Posted by titaniumed View Post
    I am really hoping that you keep posting Scott's journey, we are EXTREMELY interested in following his outcome. There are not many male testimonials, we are a rare bunch, and especially a tethering testimonial....

    After he heals up, (should be quick) would love to see some bending photos and videos. Let us know when Dr Newton releases him.
    Thanks Titanium we absolutely will.

    Scott has a checkup and X-Ray every 6 months. Most kids do this for 2 years but in Scott's case it will most likely be 3 years because he is a late bloomer. I'll post Dr. Newton's measurements each update. A video of him moving/bending is also a great idea! We'll do it.

    Quote Originally Posted by titaniumed View Post
    You have done an excellent job with him and also with documenting the torso rotation history here on this forum. Those efforts were a good shot, I wouldn't worry about chalking this off as time wasted, its might seem like that, but its worth exploring non surgical methods...its something many of us have to do.
    I'm confident that 7 years of torso rotation exercises helped although I'll never know how much. However I never anticipated that years of work would just barely provide the margin of error that allowed Scott to squeak by and qualify for tethering. At 63 degrees... barely. It's like working your heart out and doing every extra credit assignment the teacher offers and still only scoring 69.5% in her class. Fortunately she rounded up the grade to 70%. I was working hard for an "A" but I'll gladly accept the "C" because it's still a pass. At least no summer school. 8-)
    Last edited by Dingo; 08-25-2018 at 11:01 PM.

  4. #19
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,058
    Quote Originally Posted by titaniumed View Post
    With Scott's story, I think back to the days when I was his age. I was a passenger (without seat belts) in a car accident on 4/9/74, I was 15 and 4 months. Had trouble walking after that impact, we hit a tree in a 67 Chrysler Newport at 25MPH, and the bark came to the dashboard. 6 foot hood, 7 foot crumple zone. 1974 simple crash science. Ha ha Went and saw a MD at his home, no x-rays were shot, he said, "you have scoliosis". I had a 50 degree "S" curve in my back. The lumbar hump was noticed just a few months before that accident. It all came so sudden. I have this feeling that scoli males during age 14 need to be watched like a hawk by a scoliosis surgeon....On the 14th birthday....not a day later. Ask Dr Newton about this.
    We are definitely going to watch him like a hawk. You are right about 14 years old being the danger zone. From age 7 until age 11 his curve was completely stable. From 11 to 14 he had only 7 degrees of progression. After that BOOM! Nothing helped.

  5. #20
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,058
    For anybody interested this is Scott's first X-Ray taken while he was still under sedation and laying in the operating room. (pic here)

    While he was laying down the curve looked something like 15 +/-. His normal, standing X-Ray was 28.

  6. #21
    Join Date
    Sep 2011
    Posts
    371
    Quote Originally Posted by Pooka1 View Post
    First, I am glad to hear of another tethering case. Good luck to Scott going forward. It seems like this might pan out and kids with lumbar involvement should be prioritized.

    Burdle, I am shocked to hear that tethering is usually only done for T curves and it is unusual for them to tether a lumbar. First of all, most people do not bend much through the thorax and may not notice a difference in ROM between fusion and tethering there. Given the much longer track record of fusion of pure T curves with modern instrumentation (note even the H rods seem mostly okay for T curves with no lumbar involvement), I am a little shocked they do so many tetherings there. There is a critical need for lumbar treatments and tethering seems like a reasonable thing to try. There is no good solution for lumbar involvement at the moment as far as I know.
    Unusual to tether 'only' a lumbar curve. So they tether thoracic and lumbar but less usually a lumbar on its own.

    My thoughts are that because tethering is done at age 10-13 depending on growth maybe there are less compensatory lumbar curves?

  7. #22
    Join Date
    Sep 2011
    Posts
    371
    Quote Originally Posted by Pooka1 View Post
    First, I am glad to hear of another tethering case. Good luck to Scott going forward. It seems like this might pan out and kids with lumbar involvement should be prioritized.

    Burdle, I am shocked to hear that tethering is usually only done for T curves and it is unusual for them to tether a lumbar. First of all, most people do not bend much through the thorax and may not notice a difference in ROM between fusion and tethering there. Given the much longer track record of fusion of pure T curves with modern instrumentation (note even the H rods seem mostly okay for T curves with no lumbar involvement), I am a little shocked they do so many tetherings there. There is a critical need for lumbar treatments and tethering seems like a reasonable thing to try. There is no good solution for lumbar involvement at the moment as far as I know.
    Yes but tethering leaves the spine flexible whereas fusion does not. Most of these kids going for tethering are being advised that it will protect their flexibility and enable them to pursue dancing and gymnastic careers etc.. And it is being done for cosmetic reasons as well because if a curve is at a high degree of 40ish when between 10-14 then I guess there is a great risk of it being even bigger when fully grown. VBT is being recommended as an alternative to fusion but future fusion is not off the table.

  8. #23
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,058
    Quote Originally Posted by burdle View Post
    And it is being done for cosmetic reasons as well because if a curve is at a high degree of 40ish when between 10-14 then I guess there is a great risk of it being even bigger when fully grown.
    Dr. Newton mentioned that fusion would almost completely eliminate Scott's rotation. So in that regard the final result would probably look better. Tethering may improve the rotation but would likely leave more of that part of his Scoliosis behind at skeletal maturity. However we decided that over the next 50 years Scott would rather have full mobility and a few extra degrees of rotation as opposed to better cosmetics and fusion.

    So generally speaking except for the long scar on the back fusion is the better choice cosmetically.

    But our thinking is that over the next 20, 30, 40 years scientists will find a way to solve any remaining curve or rotation. Tethering leaves him open for that.
    Last edited by Dingo; 08-28-2018 at 09:49 AM.

  9. #24
    Join Date
    Sep 2011
    Posts
    371
    Quote Originally Posted by Dingo View Post
    Dr. Newton mentioned that fusion would almost completely eliminate Scott's rotation. So in that regard the final result would probably look better. Tethering may improve the rotation but would likely leave more of that part of his Scoliosis behind at skeletal maturity. However we decided that over the next 50 years Scott would rather have full mobility and a few extra degrees of rotation as opposed to better cosmetics and fusion.

    So generally speaking except for the long scar on the back fusion is the better choice cosmetically.

    But our thinking is that over the next 20, 30, 40 years scientists will find a way to solve any remaining curve or rotation. Tethering leaves him open for that.
    You might like to join one of the VBT groups on Facebook. They have much more information regarding this and lots of patient stories. VBT certainly does address rotation. VBT has always seemed to escape this forum for whatever reason.

  10. #25
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,203
    Quote Originally Posted by burdle View Post
    Yes but tethering leaves the spine flexible whereas fusion does not. Most of these kids going for tethering are being advised that it will protect their flexibility and enable them to pursue dancing and gymnastic careers etc..
    .
    Flexibility is largely an issue of lumbar. How much do people move within the thorax? Is it enough such that someone would notice a difference between fusion and tethering? Recall that study i posted about decreased ROM with tethering compared to staples. There is decreased ROM with tethers which when combined with lack of motion in the thorax may combine to be undetectable to a patient compared to either staples or fusion. If i recall, tethering was more restrictive than staples in one plane. Then there is the longer track record for T fusions versus tethering.
    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. #26
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,058
    Quote Originally Posted by burdle View Post
    VBT certainly does address rotation.
    Dr. Newton didn't talk much about improving rotation and we had fairly low expectations. And then seemingly out of nowhere BAM it was 50% reduced and if all goes well it will continue to diminish. For me at least that was our biggest surprise. We were only thinking about his S Curve.

    This Wednesday will be the 3 week mark. Scott doesn't need Ibuprofen at this point. All things considered it was an easy recovery.

  12. #27
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,978
    Quote Originally Posted by Dingo View Post
    Dr. Newton didn't talk much about improving rotation and we had fairly low expectations. And then seemingly out of nowhere BAM it was 50% reduced and if all goes well it will continue to diminish. For me at least that was our biggest surprise. We were only thinking about his S Curve.

    This Wednesday will be the 3 week mark. Scott doesn't need Ibuprofen at this point. All things considered it was an easy recovery.
    Nice! Young age and minimally invasive surgery....

    I have had both. There is a huge difference in recovery.

    I had a shoulder rebuild done through portals, took 1 Celebrex. On my gall removal, Laparoscopic Cholecystectomy, I took no medications. Both procedures had around 5 small incisions.

    Open A/P full fusion scoliosis surgery, that's completely different....

    Attached below is a CT scan after scoliosis surgery that show's my "corrected" rotation. I would say that my rotation was a huge factor in decision since taking a spinal cord and wringing it like a towel eventually led to CNS problems and major fatigue. The left screw is at 45 degrees to the photo.

    Ed
    Attached Images Attached Images
    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

  13. #28
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,058
    Quote Originally Posted by titaniumed View Post
    Open A/P full fusion scoliosis surgery, that's completely different....
    How old were you when you had the fusion from your X-Ray? Those look like vampire screws! How long was the recovery?

    Quote Originally Posted by titaniumed View Post
    Attached below is a CT scan after scoliosis surgery that show's my "corrected" rotation. I would say that my rotation was a huge factor in decision since taking a spinal cord and wringing it like a towel eventually led to CNS problems and major fatigue. The left screw is at 45 degrees to the photo. Ed
    That image is amazing! Do you know how much the surgery improved your rotation?

    Dr. Newton measured Scott's rotation at 20. He didn't tell us the new measurement after the surgery but my guess is roughly half that amount.
    10+/- is still a lot but massively better than it was. Any improvement after this is icing on the cake.

  14. #29
    Join Date
    Sep 2011
    Posts
    371
    Quote Originally Posted by Pooka1 View Post
    Flexibility is largely an issue of lumbar. How much do people move within the thorax? Is it enough such that someone would notice a difference between fusion and tethering? Recall that study i posted about decreased ROM with tethering compared to staples. There is decreased ROM with tethers which when combined with lack of motion in the thorax may combine to be undetectable to a patient compared to either staples or fusion. If i recall, tethering was more restrictive than staples in one plane. Then there is the longer track record for T fusions versus tethering.
    Because tethering leaves the thoracic still moveable it means less pressure on lumbar below and thus less degeneration etc ( although long term studies are not available). Gymnasts and dancers are being told no hope of a career with fusion but can continue with tethering.

    If VBT not suitable the patient has to wait until fully grown for fusion and thus in the meantime often cannot dance etc because of the curve. VBT deals with the scoliosis at a much earlier age and that is the key.

  15. #30
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,203
    Quote Originally Posted by burdle View Post
    Because tethering leaves the thoracic still moveable it means less pressure on lumbar below and thus less degeneration etc ( although long term studies are not available). Gymnasts and dancers are being told no hope of a career with fusion but can continue with tethering.
    Yes that would be important for curves involving the lumbar. But for pure T curves where the fusion ends at T12 or L1, both Boachie and our surgeon claim it is one and done for surgery if the compensatory lumbar straightens when the T curve is straightened. I thought you were making a point about ROM in the T curve. That paper I posted a while ago showed LESS side to side ROM with tethers than staples as you can imagine with a cord on the side of the spine. It was much less than the control but the tether preserves more front to back which again I am not sure would not just equate to bad posture when talking about the thorax. I will find the paper... it was animal cadavers IIRC so take it with a huge grain of salt.

    If VBT not suitable the patient has to wait until fully grown for fusion and thus in the meantime often cannot dance etc because of the curve. VBT deals with the scoliosis at a much earlier age and that is the key.
    I was looking for papers on flexibility of the T part of the spine and while it can be bent in various ways, I am not sure people do any of that in real life. It all looked like examples of bad or weird posture which can't be good for the spine.

    Also I looked for papers on flexibility of scoliotic spines versus normal spines. I couldn't find much but the flexibility isn't all that different and is even higher in the area around the curve apex than in normals to accommodate the stiffness in the apex. But I think that may be one mechanism that hurts the spine in untreated scoliosis.

    My one daughter said she felt no loss of ROM after fusion (T4-L1). Thus I assumed either people just don't normally use whatever ROM they have in the thorax or that she had the curve so long that she didn't remember the time before the curve. Both my daughters report no issue and they both appear to always have very good posture now. I have opined that having a T fusion in the sport of dressage is almost a cheat where posture is everything and even Olympic riders use mirrors to help them.

    As for rotation, one daughter has no apparent rotation before or after surgery. The other had very wild rotation before surgery that was mostly gone after surgery as seen by the rods being almost super-imposed on side radiograph. I have to say though some has crept back over the years and that is in keeping with the literature.
    Last edited by Pooka1; 08-29-2018 at 07:46 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."

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •