Page 1 of 12 12311 ... LastLast
Results 1 to 15 of 173

Thread: Scott's Vertebral Body Tethering Thread

  1. #1
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,025

    Scott's Vertebral Body Tethering Thread

    Because of the length of this post I'm going to have to split it into multiple posts to make it work correctly.

    Scott’s History
    2007 - Age 4 - Rib hump noticed but scoliosis not measured
    2008 - Age 5 - 11 degrees
    2009 - Age 6 - 14 degrees
    2010 - Age 7 - 19 degrees (Torso rotation exercises began just before 7th birthday)
    2011 - Age 8 - 20 degrees
    2012 - Age 9 - 20 degrees
    2013 - Age 10 - 19 degrees
    2014 - Age 11 - 21 degrees
    2015 - Age 12 - 24 degrees
    2016 - Age 13 - 24 degrees
    2017 - Age 14 - 28 degrees
    2018 - Age 14 & 5 months - 35 degrees - Flew to San Diego the following week and X-Rayed/remeasured by Dr. Newton at 45 degrees
    2018 - Age 14 & 10 months - 55 degrees, surgery scheduled
    2018 - 4 weeks later, the day before surgery - 63 degrees
    Two weeks after surgery, first standing X-Ray - 28 degrees

    Scott’s Surgeon
    Video: Orthopedics Division | Dr. Peter Newton

    Background: Dr. Peter Newton

    Dr. Newton is the Chief of Orthopedics & Scoliosis at Rady Children’s Hospital and he performed Scott’s tethering procedure. People travel from around the world for Dr. Newton’s expertise and we were lucky that he was just an hour’s flight away in San Diego. He has published over 140 studies including some of the earliest research on tethering.

    2002: Asymmetrical flexible tethering of spine growth in an immature bovine model.

    2008: Spinal growth modulation with an anterolateral flexible tether in an immature bovine model: disc health and motion preservation.

    On a personal note we liked Dr. Newton very much. He and his team were friendly and helpful throughout the entire process. An hour before Scott was tethered a member of Dr. Newton’s surgery team visited with us. She explained that Dr. Newton’s team worked together on every procedure so it’s always the same people. She was the newest member of his team and had been with him for over 11 years. The oldest member of the team had worked with him for several decades. The fact that top people stay with Dr. Newton for so many years says a lot about his character and skill. He’s Outstanding!
    Last edited by Dingo; 10-07-2018 at 01:07 PM.

  2. #2
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,025
    Results Of The Surgery:
    Scott’s curve was reduced from 63 degrees to 28 degrees post-surgery. This is his before and after X-Ray (pic here). He woke up one full inch taller. Although it wasn’t reported to us Scott’s mother and I estimate that his rotation was reduced by roughly 50%. This is a picture of his back three days after surgery (pic here). For reference this is a picture of Scott in June 2018 (pic here). His rib hump had become plainly visible even through clothing. We don’t know if this amount of improvement is typical but as a parent it is astonishing and we are grateful that this technology exists. Dr. Newton explained to us that Scott’s X-Rays indicate he is a late bloomer and his spine should grow until sometime after his 18th birthday. The tethers will create extra pressure on one side of his vertebrae which will cause that side to grow relatively slower. This should lead to a progressive correction of the curve. It is also possible that his rotation will continue to improve. After Scott is finished growing the cords shouldn’t need to be removed. However they can be removed if for some reason that becomes necessary. Although the results are extremely encouraging there are no long-term studies on VBT. Less than 1,000 of these procedures have been performed.
    Last edited by Dingo; 08-25-2018 at 11:57 PM.

  3. #3
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,025
    After The Surgery:
    Because a picture is worth a thousand words these five images may tell the story best (pic here).

    Day 1) Scott spent most of the day laying down and resting. He was tired and sore. He ate barely anything. He got up twice and sat in a chair. This is a video of Scott being rolled out of bed for the second time (video here).

    Day 2) This was the high point for Scott’s surgery pain. He didn’t want to eat very much. He managed to walk around the hospital but wasn’t in a good mood.

    Day 3) His pain had subsided from the day before. He threw up once in the morning. The uncomfortable chest tube was removed around lunchtime and within a couple of hours he started to feel much better. This is a video of him walking through the hospital and down the stairs (video here). His appetite began to return.

    Day 4) The worst of the pain was gone and he was much happier. He was discharged from the hospital.

    Day 5 through Day 13) Scott stayed in San Diego until his 2 week checkup with Dr. Newton. Each day he felt better and his pain level dropped to a 0.5 on a 0 – 10 scale. This is a video of Scott walking outside his hotel room 9 days after surgery (video here). On day 13 the bandages were removed which revealed a sticky mess and 4 incisions on Scott’s right side. This is a picture of his incision (pic here). The blotchy, red skin was due to the bandages being taken off. It went back to normal in about 15 minutes. After he took a shower most of the goop was gone.

    Day 14) Back to school! This is a picture of Scott yesterday morning with his brother before classes (pic here).
    Last edited by Dingo; 08-25-2018 at 11:59 PM.

  4. #4
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,025
    Restrictions After Surgery:
    For the first 90 days after surgery Scott has to wear a small back brace (pic here). He wears it during all of his daily activities and to be honest he doesn’t mind. Fortunately he doesn’t have to wear it at night to bed. We’re going to take it easy during the first 6 week period to make certain that all of the hardware implants firmly. No heavy back-packs or lifting/twisting/rough-housing, etc. etc. We can do weight training after 6 weeks but nothing too heavy or rough. After 90 days Scott can do pretty much anything but we are going to remain extra careful. No back flips or 300 pound squats until after he’s done growing. If Scott loosens a screw or more likely snaps a cord he’ll need another surgery. No thanks!

    Checkups After The Surgery:
    For at least the next 2 years we will fly to San Diego every 6 months for an appointment with Dr. Newton.

    Why Didn’t We Do VBT When Scott Was At 45 Degrees?
    Scott was a late bloomer. His spine was too immature and too much unpredictable growth remained. This can potentially result in overcorrection and additional surgery or a generally less favorable outcome. Five months after his initial visit with Dr. Newton his body was ready and we scheduled surgery. Unfortunately his curve progressed at an ever increasing rate and at 63 degrees he barely made it. If the curve had progressed another 10 degrees over an additional month tethering may not have been an option.

    Why Did We Choose Tethering?
    We chose tethering because it bought us time. Modern fusion may be a fantastic, best choice for many kids but there is no turning back after the procedure is done. Even if tethering turns out to be less than perfect it keeps our options open. When I was a little kid my family had 1 corded phone in the kitchen, a black and white TV, no VCR and no microwave oven. Technology never stops improving and in 20 or 30 years scoliosis may be easily fixed with smart materials or some other device/procedure we can’t imagine today.

    Can This Surgery Work For Adults?
    There are no long-term studies on this procedure. My sense is that nobody knows yet. Remaining growth plays a significant role in correction so it’s possible that the hardware or procedure would need to be modified for adults. This may take many years of research and testing to determine.

    Can Someone Get Fusion If Tethering Fails?
    Yes.

    Can The Cords Break?
    Yes. They can and do break. Over a long enough period of time they may all break. That shouldn’t be a problem after growth is complete because the spine will have remodeled into a healthy shape.

    Did Anything Unexpected Happen?
    Yes. You may notice in the videos that Scott tilted his head after surgery. In addition he stood crooked. This was because his brain had adapted to work with a scoliotic spine. It took about 10 days post-surgery for his nervous system to adapt and these symptoms went away. He practiced walking while he looked in a mirror which helped quite a bit.

    Scott’s Rotation Exercises
    From Scott's first measurement at age 5 until age 7 his curve progressed from 11 to 19 degrees. The persistent worsening of his condition was extremely concerning and a few weeks before his 7th birthday we began the rotation machine exercises documented in this thread. During the next 4 years of steady growth his curve remained stable between 19 and 21 degrees. This was the same positive outcome documented in the studies and I began to think we had beaten his scoliosis. Unfortunately after that point the curve began to slowly progress. Despite our continued effort his curve went from 21 to 28 degrees over 3 years. The exercises may have helped but at this point not enough to stop progression. After age 14 the rotation exercises didn’t appear to help at all. He progressed from 28 degrees to 63 degrees in one year. Ouch! I am glad we did these exercises because they appear to have halted progression for 4 full years. At 63 degrees and 10 degrees progression per month Scott had his tethering done at almost the last possible hour. Torso Rotation exercises likely bought him just enough time to get over the finish line at the buzzer. Going forward Scott will no longer do these exercises because we want the screws to firmly implant into his vertebrae. After that happens there is probably no need because natural growth over the next 3 years will power the correction further.
    Last edited by Dingo; 08-26-2018 at 12:53 AM.

  5. #5
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,025

  6. #6
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,769
    Dingo, Wow! This is sudden news.....

    28 to 63 degrees in a year.....and we thought fires in California spread quickly.

    Did Dr Newton have any input on why this progression occurred so quickly?

    We are fortunate that the technology has improved and that tethering is an option. Back when I was Scott's age, my twin 60 degree showed up out of nowhere. I noticed my lumbar hump one day.

    Glad to see it all worked out well

    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. #7
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,025
    Hey TitaniumEd, long time no talk! 8-)

    Dr. Newton was not able to determine why Scott's curve progressed so quickly after age 14. That marked the beginning of his growth spurt which certainly played a part.

    One clue showed up on the MRI a few weeks before surgery. A very small Syrinx was detected in his spine. When we arrived in San Diego for Scott's surgery Dr. Newton ran the final X-Ray that showed rapid progression from 55 degrees to 63 in just a month. That was a warning sign that something might be very wrong. They ran a second MRI to see if the Syrinx had changed or had become dangerous. It hadn't changed and Scott didn't have any neurological symptoms. The Syrinx didn't appear to be the cause but without a definitive answer it's still an unknown.

    Syrinx are a known cause of Scoliosis and many appear during the first month of pregnancy. If the Syrinx was congenital it would suggest that something wasn't right from the beginning and Scott's early-onset Scoliosis was probably the result of a birth defect. We'll never know for sure because he didn't get an MRI until he was 14.

    The Syrinx is very small and it's also possible that it's a side effect of the Scoliosis, not the other way around.

    So it's a red flag, but it's going to remain a mystery until science learns more.

    Ten years of fighting Scoliosis has given me PTSD, hahaha.
    Last edited by Dingo; 08-24-2018 at 05:44 PM.

  8. #8
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,025
    One more thing about Scott's rapid progression.

    Scott was measured at 35 degrees in Arizona. I panicked and we flew to San Diego the next week. Scott had a new X-Ray and he was remeasured at 45 degrees. My blood went cold. Dr. Newton is one of the best in the world so I'm going with his measurement.

    So maybe every measurement before 45 degrees in San Diego was wrong. They may show the general trend but not the true values. When we thought Scott was 28 degrees maybe he was 38 degrees. So his last year was bad but not quite as extreme as the numbers show.
    Last edited by Dingo; 08-24-2018 at 01:41 AM.

  9. #9
    Join Date
    Sep 2011
    Posts
    356
    It is important to stress that VBT is done with growth remaining... they look at the Risser and Sanders Score rather than just a visible check on the look of the patient. It is a quite specific parameter. Shriners will not do VBT if you are over Risser 3 but their program has very strict parameters but the surgery is free. Other surgeons will do VBT but again depending on Risser Score. Drs Anaconni, Betz and Cudihhy do VBT on mature patients and also Dr Lonner- however mature really means fully grown and not aged. They have done a few aged patients though often with a processes known as ASC where some of the disks are removed to allow a better tethering. If you are Risser 0 there is a danger of covercorrection so they usually wait. VBT is also dependent on the flexibility and position of the curve- it is usually a thoracic curve although some lumbar curves are tethered. It is unusual to only tether a lumbar curve.

    I assume Dingo had to pay for his son's procedure as not covered by insurance?

  10. #10
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,087
    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.

    Quote Originally Posted by burdle View Post
    It is important to stress that VBT is done with growth remaining... they look at the Risser and Sanders Score rather than just a visible check on the look of the patient. It is a quite specific parameter. Shriners will not do VBT if you are over Risser 3 but their program has very strict parameters but the surgery is free. Other surgeons will do VBT but again depending on Risser Score. Drs Anaconni, Betz and Cudihhy do VBT on mature patients and also Dr Lonner- however mature really means fully grown and not aged. They have done a few aged patients though often with a processes known as ASC where some of the disks are removed to allow a better tethering. If you are Risser 0 there is a danger of covercorrection so they usually wait. VBT is also dependent on the flexibility and position of the curve- it is usually a thoracic curve although some lumbar curves are tethered. It is unusual to only tether a lumbar curve.

    I assume Dingo had to pay for his son's procedure as not covered by insurance?
    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
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,769
    Quote Originally Posted by Dingo View Post
    A very small Syrinx was detected in his spine.
    Where? What level?

    There were a lot of Chiari folks posting on the Brit forum years ago. Once again, this is good reason to visit a scoliosis surgeon if one has scoliosis. I have laid in MRI's quite a few times as they were looking close.....then they thought I had cancer but I fooled them. Ha!

    Did Scott complain of any symptoms during the last year? Pain, anything?

    How did you know I am going blind? I have a friend building me a smoking hot computer right now, going to run 2X 28" monitors. This will help with my neck stretches! (smiley face)

    Scoliosis takes deep breaths. One day at a time.

    Deep breathing works well (for the parents)

    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

  12. #12
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,025
    Quote Originally Posted by burdle View Post
    It is important to stress that VBT is done with growth remaining... they look at the Risser and Sanders Score rather than just a visible check on the look of the patient. It is a quite specific parameter. Shriners will not do VBT if you are over Risser 3 but their program has very strict parameters but the surgery is free. Other surgeons will do VBT but again depending on Risser Score. Drs Anaconni, Betz and Cudihhy do VBT on mature patients and also Dr Lonner- however mature really means fully grown and not aged. They have done a few aged patients though often with a processes known as ASC where some of the disks are removed to allow a better tethering. If you are Risser 0 there is a danger of covercorrection so they usually wait. VBT is also dependent on the flexibility and position of the curve-
    I can confirm all of that. They tested Scott's curve for flexibility in multiple ways including having him lay on a hump to see how much his spine bent. If the curve wasn't flexible they weren't going to do the surgery.
    I'm not sure what Scott's Risser number was at age 14 but he wasn't ready. They X-Rayed his hand and maybe other body parts to determine this. 5 months later he barely hit the mark and they agreed to do the surgery.

    As an aside Dr. Newton is a pediatric specialist so he doesn't work with adult patients.
    Last edited by Dingo; 08-24-2018 at 11:50 AM.

  13. #13
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,025
    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.
    Thanks Pooka!

    At my first appointment Dr. Newton told me that if Scott had fusion the short/medium/long-term results were predictable because it was a well understood and established procedure.
    The same wasn't true for VBT. He said the science behind tethering was strong and over the short term the results had been excellent however there were no long term studies. What happens after 10 years is still unknown. No matter how promising VBT looks until the Orthopedic community gets long-term experience tethering won't become mainstream.

    And that makes me think about stapling. It looked promising but as near as I can tell the manufacturer has stopped producing the staples and VBS is no longer performed. Dr. Antonacci mentions that here. I might be wrong but I believe I read they had trouble keeping the hardware stable and/or implanted. I know that was true in early studies on stapling.

    Fusionless scoliosis correction using a shape memory alloy staple in the anterior thoracic spine of the immature goat.
    Complications were limited to partial staple backout in 27% of 56 staples.

    That's one of the difficulties with any new procedure. Until something has been around for awhile it's impossible to know for sure.

    Tethering is such a simple idea, I hope it works out!
    Last edited by Dingo; 08-25-2018 at 12:45 AM.

  14. #14
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,025
    Quote Originally Posted by titaniumed View Post
    Where? What level?

    Did Scott complain of any symptoms during the last year? Pain, anything?
    Dr. Newton told us the level where the Syrinx was located but I can't remember exactly. It was in his lower neck. Although I'll never know for sure I believe the Syrinx is a red flag that perhaps something was wrong from the beginning. Scott's early-onset scoliosis may have been the result of a birth defect. Hopefully some smart scientists will figure this out over the next few decades. 8-)

    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 surgery that pain is gone. He still has general soreness from the surgery and he gets tired easily. After school he lays down and plays on his phone which is relaxing and feels good.
    Last edited by Dingo; 08-24-2018 at 11:47 AM.

  15. #15
    Join Date
    Nov 2005
    Location
    SPAIN
    Posts
    64
    Hi Dingo!

    I remember reading your messages several years ago , but I didnīt know your sonīs back has been getting worse soo quickly.

    Iīm glad VBT is an option for your son and I hope it will keep his scoliosis under control, so you can avoid fusion in the future. If it had been an option when my daughter was young enought I would have given a try too.

    Good luck!!
    2004: Daughter diagnosed at 13 L38š. Risser 0.
    Treatment: Cheneau brace
    2009: Brace free, 18 years old, Risser 5, L25š

Posting Permissions

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