Scott's Vertebral Body Tethering Thread

[Dingo]

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!

[Dingo]

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.

[Dingo]

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).

[Dingo]

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.

[Dingo]

Vertebral Body Tethering Links
Mia Schloegel’s tethering procedure in San Diego

Anterior vertebral body tethering: a promising non-fusion scoliosis treatment

Anterior vertebral body tethering for idiopathic scoliosis: two-year results.

Anterior vertebral body tethering for immature adolescent idiopathic scoliosis: one-year results on the first 32 patients.

Tethers commonly break 1 to 2 years after VBT procedures so BE CAREFUL!

[titaniumed]

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

[Jinseeker]

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.

Would you mind showing any proof and evidence for this, that the "spine would have remodeled into a healthy shape".
I have asked spineassociates about this very question, and their response was "we don't know yet", and judging by the fact that most VBT surgeons decide to leave the implants in the spine and not say if and when they will take it out, and as backed up in your published studies you posted, have shown multiple times that when the implants do fail at 1-2 yr point they get replaced not removed, with some even ending up with fusion.

So I'm confused as to why you say the spine actually remodels into a healthy shape and stays that way with removal of the implants, sounds too good to be true. That's essentially curing the scoliosis. As we have known in the past, an unfused spine with the hardware removed, always remits back to its original scoliotic state. What difference do tethers make compare to fusion based implants to change the course of that?

Also if you look for the answer of the spine surgeon regarding VBT from this video here, https://www.youtube.com/watch?v=k4xz-tgn1Us
he seems to imply that by leaving the VBT implant in the body proves the inconfidence of the surgeon to restore motion for the patient, and that there will still be a restriction of motion regardless of. A tethered spine in the thoracic region is really no better than a fused one in the thoracic region. The only benefit is in the lumbar, but motion is still restrictive nonetheless with the chance of deteriorating the lumbar discs or breaking the implants.

[burdle]

Would you mind showing any proof and evidence for this, that the "spine would have remodeled into a healthy shape".
I have asked spineassociates about this very question, and their response was "we don't know yet", and judging by the fact that most VBT surgeons decide to leave the implants in the spine and not say if and when they will take it out, and as backed up in your published studies you posted, have shown multiple times that when the implants do fail at 1-2 yr point they get replaced not removed, with some even ending up with fusion.

So I'm confused as to why you say the spine actually remodels into a healthy shape and stays that way with removal of the implants, sounds too good to be true. That's essentially curing the scoliosis. As we have known in the past, an unfused spine with the hardware removed, always remits back to its original scoliotic state. What difference do tethers make compare to fusion based implants to change the course of that?

Also if you look for the answer of the spine surgeon regarding VBT from this video here, https://www.youtube.com/watch?v=k4xz-tgn1Us
he seems to imply that by leaving the VBT implant in the body proves the inconfidence of the surgeon to restore motion for the patient, and that there will still be a restriction of motion regardless of. A tethered spine in the thoracic region is really no better than a fused one in the thoracic region. The only benefit is in the lumbar, but motion is still restrictive nonetheless with the chance of deteriorating the lumbar discs or breaking the implants.

You would probably do better to discuss with VBT surgeons rather than non-VBT surgeons. The non-VBT surgeons still comment on a procedure that they don't fully understand yet. The principle of the remodelling is based on Heuter-Volkmann Law.

It is accepted that a fused thoracic puts more pressure on a lumbar curve often leading to extension of fusion. VBT is intended certainly in the thoracic to leave the spine flexible unlike fusion. Any preservation of flexibility is to be welcome, I cannot understand why you would conclude that a tethered spine in the thoracic region is really no better than a fused one in the thoracic region? The screws in a VBT procedure are placed in the vertebral bodies and not in the pedicle thus preserving the disks themselves. The human spine is meant to move.

VBT is being performed in many countries now and in UK there are trials beginning. The idea will be that instead of waiting until fully grown and then performing fusion that the scoliosis is addressed earlier thus preserving growth and flexibility. Surely this is to be welcomed? I do not think Dingo is quite right in that they intend to take out the tethering - I think currently the thinking is that leaving it in does no harm. It has nothing to do with lack of confidence.

Surgeons like Betz, Cuddihy and Antonacci etc are hardly ever doing fusion now which says something about their confidence in VBT.

[Dingo]

Would you mind showing any proof and evidence for this, that the "spine would have remodeled into a healthy shape".

This is the first reported case of tethering.
Study: Growth modulation by means of anterior tethering resulting in progressive correction of juvenile idiopathic scoliosis: A case 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.

As demonstrated on the radiographs, the vertebral wedging that existed preoperatively corrected with time, apparently through growth modulation of the end plate physes.

Children grow/change so fast which is why tethering makes sense for them. I believe the ideal tethering candidate has 2 or 3 years of growth remaining. More time than that and you risk over-correction, less time and you won't get enough correction.

At least to me tethering doesn't appear to make a lot of sense for adults. The cords break in a few years and if the bone hasn't grown/remodeled the curve will probably go back to its original shape.
Maybe if they had a material that could last 10 or 20 years it might make more sense in adults. They're probably working on that right now.

[Pooka1]

As we have known in the past, an unfused spine with the hardware removed, always remits back to its original scoliotic state. What difference do tethers make compare to fusion based implants to change the course of that?

That's an interesting point, Jinseeker. They always used to say that once fused, the hardware can be removed. But I think I recall articles on how much the spine will recurve/retwist. IIRC, the twisting (axial rotation) was the major change. As for tethers, who knows. I hope there is no autofusion like with growing rods. I doubt there is because motion in at least one plane (front to back) is well preserved. The side-to-side is not well preserved and was worse than even staples in that one pig spine study IIRC. But this is not relevant to thorax I suspect and is mainly relevant to lumbar. I posted an article about how people can bend quite a bit through their thorax but I think there is no reason in real life to do so if you are not a contortionist. This is why my daughter was unaware she had lost ROM in her thorax until I asked her to bend sideways. She still thought that was normal until I showed her how much I can bend to the side (about twice as much as she could). The point is she feels normal and does not perceive any loss of ROM in day to day life with her T4-L1 fusion. This is why I would choose fusion again for a child over any experiemental method if a T fusion that can end at L1 or above.

A tethered spine in the thoracic region is really no better than a fused one in the thoracic region. The only benefit is in the lumbar, but motion is still restrictive nonetheless with the chance of deteriorating the lumbar discs or breaking the implants.

This does seem to be the case. I suspect the ROM side to side of tethering is close to that for fusion but is much greater than fusion for front to back. For thorax where people don't bend through the thorax in normal life, I suspect both fused and tethered folks feel normal like my daughter. The real issue is and has always been lumbar and fusions that go below about L1.