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Dingo
08-23-2018, 11:28 AM
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 (http://www.scoliosis.org/forum/showthread.php?8976-Torso-Rotation-Strength-Training-for-Scoliosis))
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 (https://vimeo.com/138252040)

Background: Dr. Peter Newton (https://www.rchsd.org/doctors/peter-o-newton-md/)

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. (https://www.ncbi.nlm.nih.gov/pubmed/11923660)

2008: Spinal growth modulation with an anterolateral flexible tether in an immature bovine model: disc health and motion preservation. (https://www.ncbi.nlm.nih.gov/pubmed/18379398)

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
08-23-2018, 11:28 AM
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). (https://imgur.com/a/oxJdYTS) 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) (https://imgur.com/a/hKchH5K). For reference this is a picture of Scott in June 2018 (pic here) (https://imgur.com/a/j8caXjO). 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
08-23-2018, 11:30 AM
After The Surgery:
Because a picture is worth a thousand words these five images may tell the story best (pic here) (https://imgur.com/a/cEEOU7w).

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) (https://youtu.be/VIy1Z70T0tg).

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) (https://youtu.be/iMEktwps11A). 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) (https://youtu.be/lBh5OaB0B5A). 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) (https://imgur.com/a/PYCP8MN). 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) (https://imgur.com/a/QbNkSjO).

Dingo
08-23-2018, 11:31 AM
Restrictions After Surgery:
For the first 90 days after surgery Scott has to wear a small back brace (pic here) (https://imgur.com/a/YKAZmAO). 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 (http://www.scoliosis.org/forum/showthread.php?8976-Torso-Rotation-Strength-Training-for-Scoliosis). 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
08-23-2018, 11:31 AM
Vertebral Body Tethering Links
Mia Schloegel’s tethering procedure in San Diego (https://www.anationinmotion.org/patient-story/tethering-procedure-for-scoliosis-mia-schloegel/)

Anterior vertebral body tethering: a promising non-fusion scoliosis treatment (http://www.spinalsurgerynews.com/2017/04/non-fusion-scoliosis-treatment/19218)

Anterior vertebral body tethering for idiopathic scoliosis: two-year results. (https://www.ncbi.nlm.nih.gov/pubmed/24921854)

Anterior vertebral body tethering for immature adolescent idiopathic scoliosis: one-year results on the first 32 patients. (https://www.ncbi.nlm.nih.gov/pubmed/25510515)

Tethers commonly break 1 to 2 years after VBT procedures so BE CAREFUL! (http://www.scoliosis.org/forum/showthread.php?15940-Tethers-commonly-break-1-to-2-years-after-VBT-procedures)

titaniumed
08-23-2018, 11:05 PM
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

Dingo
08-24-2018, 12:18 AM
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 (https://www.columbiaspine.org/condition/syringomyelia/) 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.

Dingo
08-24-2018, 12:39 AM
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.

burdle
08-24-2018, 03:42 AM
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?

Pooka1
08-24-2018, 07:07 AM
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.


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?

titaniumed
08-24-2018, 08:29 AM
A very small Syrinx (https://www.columbiaspine.org/condition/syringomyelia/) 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

Dingo
08-24-2018, 09:53 AM
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.

Dingo
08-24-2018, 10:30 AM
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 (https://www.spineandscoliosis.com/procedures/scoliosis-treatment/vertebral-body-stapling-vbs/). 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. (https://www.ncbi.nlm.nih.gov/pubmed/15371698)
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!

Dingo
08-24-2018, 10:44 AM
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.

AILEA
08-24-2018, 11:51 AM
Hi Dingo!

I remember reading your messages several years ago , but I didn´t know your son´s back has been getting worse soo quickly.

I´m 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!!

Dingo
08-24-2018, 12:11 PM
Thanks AILEE! 8-)

It's good to see that your daughter's curve stopped at 25º! 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.

titaniumed
08-25-2018, 09:46 AM
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

Dingo
08-25-2018, 05:44 PM
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.


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-)

Dingo
08-25-2018, 05:54 PM
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.

Dingo
08-27-2018, 09:56 PM
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) (https://imgur.com/a/spU1rG7)

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

burdle
08-28-2018, 07:12 AM
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?

burdle
08-28-2018, 07:16 AM
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.

Dingo
08-28-2018, 09:36 AM
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.

burdle
08-28-2018, 11:18 AM
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.

Pooka1
08-28-2018, 11:55 AM
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.

Dingo
08-28-2018, 04:12 PM
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.

titaniumed
08-28-2018, 08:44 PM
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

Dingo
08-28-2018, 10:41 PM
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?


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.

burdle
08-29-2018, 04:06 AM
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.

Pooka1
08-29-2018, 06:34 AM
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.

Pooka1
08-29-2018, 06:39 AM
https://www.ors.org/Transactions/57/0827.pdf

Tethers had less lateral ROM than staples and were stiffer laterally than staples but look at the huge error bars. But tethers were better in ROM and less stiff than staples in other planes of motion. The data were all over the place and if they repeated the study the results might be different in my opinion given the variability in the measurements.

Dingo
08-29-2018, 09:46 AM
https://www.ors.org/Transactions/57/0827.pdfTethers had less lateral ROM than staples and were stiffer laterally than staples but look at the huge error bars. But tethers were better in ROM and less stiff than staples in other planes of motion. The data were all over the place and if they repeated the study the results might be different in my opinion given the variability in the measurements.

Interestingly enough Dr. Newton and Rady Children's hospital participated in that study.

One thing that's different about tethers compared to staples is that sooner or later the tethers will deteriorate and break. I'm not sure if that means 5 years or 25 years, but they shouldn't last a lifetime.

As an aside Dr. Newton mentioned to me during our first meeting that he never performed a stapling procedure. He was always focused on tethering.

Dingo
08-29-2018, 09:59 AM
As near as I can tell sometime in 2016 Vertebral Body Stapling stopped being performed and the staples stopped being manufactured (link here (https://www.spineandscoliosis.com/procedures/scoliosis-treatment/vertebral-body-stapling-vbs/)). If somebody from the medical or research community knows why I'd be fascinated to learn the reasons. There are no long term studies on tethering and I'd like to know how the two procedures might be different. Maybe knowing how tethering is different/better would help me sleep at night, haha.

These two studies might explain why stapling was ended. There is always risk with any surgery and as better studies were published stapling was found to be not super effective. That's one possible explanation, not sure if there are others.

Vertebral Body Stapling versus Bracing for Patients with High-Risk Moderate Idiopathic Scoliosis (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4649085/)
Purpose. We report a comparison study of vertebral body stapling (VBS) versus a matched bracing cohort for immature patients with moderate (25 to 44°) idiopathic scoliosis (IS).
Methods. 42 of 49 consecutive patients (86%) with IS were treated with VBS and followed for a minimum of 2 years. They were compared to 121 braced patients meeting identical inclusion criteria. 52 patients (66 curves) were matched according to age at start of treatment (10.6 years versus 11.1 years, resp. [P = 0.07]) and gender.
Results. For thoracic curves 25–34°, VBS had a success rate (defined as curve progression <10°) of 81% versus 61% for bracing (P = 0.16). In thoracic curves 35–44°, VBS and bracing both had a poor success rate. For lumbar curves, success rates were similar in both groups for curves measuring 25–34°.
Conclusion. In this comparison of two cohorts of patients with high-risk (Risser 0-1) moderate IS (25–44°), in smaller thoracic curves (25–34°) VBS provided better results as a clinical trend as compared to bracing. VBS was found not to be effective for thoracic curves ≥35°. For lumbar curves measuring 25–34°, results appear to be similar for both VBS and bracing, at 80% success.

Vertebral Body Stapling for Moderate Juvenile and Early Adolescent Idiopathic Scoliosis: Cautions and Patient Selection Criteria. (https://www.ncbi.nlm.nih.gov/pubmed/26655807)
STUDY DESIGN: Single-surgeon retrospective case series.
OBJECTIVE: To validate and further describe clinical and radiographic outcomes of patients undergoing vertebral body stapling (VBS), with the goal of learning if VBS is a safe and effective alternative to bracing for treating moderate idiopathic scoliosis (IS) in the growing pediatric patient.
SUMMARY OF BACKGROUND DATA: VBS is a growth-modulation technique to control moderate idiopathic scoliosis (IS) while avoiding fusion. Existing studies state successful curve control rates equivalent to bracing, but the majority of reports have come from a single institution.
METHODS: All IS patients who underwent VBS by 1 surgeon were included. Indications were brace intolerance and a structural coronal curve of 25° to 40°. Proportional nitinol staples were used in all cases. Pre- and postoperative radiographs, pulmonary function testing, and physical exam measurements were serially recorded.
RESULTS: VBS was performed on 35 patients (28 females, 7 males) with mean age 10.5 years (range 7.0-14.6 years). Total of 31 patients (33 stapled curves) completed follow-up. Preoperative Risser grade was 0 in 31 patients, 1 in 1 patient, and 2 in 3 patients. Stapled curves were controlled with <10° of progression in 61% of cases. Curves <35° had a control rate of 75%, and patients <10 years had a 62% curve control rate. Eleven patients (31%) required subsequent fusions; two curves (6%) over-corrected. Preoperative supine flexibility > 30% was predictive of ultimate curve control. No neurologic complications were encountered; 5 patients (14%) developed small pneumothoraces.
CONCLUSION: This series contains the most patients and longest followup reported for VBS. Successful curve control was achieved less frequently than in previous reports, particularly in patients <10 years.
LEVEL OF EVIDENCE: 4.

titaniumed
08-30-2018, 01:20 AM
How old were you when you had the fusion from your X-Ray? Those look like vampire screws! How long was the recovery?


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.

I was 49 when my scoliosis surgery was done. The x-rays in my signature are from Jan 2008

The CT was a year later April 2009 looking for stones.

My recovery from my scoliosis surgeries?....90% after 12 months, 100% after 2 years. the 2nd year was the rebuilding of the soft tissues, not an easy thing for athlete's. If you don't use muscles, you lose them. Getting them back is not an easy thing and it takes time. Adults over 50 need at least a year for recovery, full open scoliosis surgeries are invasive procedures.

I have no idea on my rotational correction. I don't know what level the CT is sliced at, and don't know what my rotation was to begin with. The rotation obviously is different on each level. Here is a study on the subject matter....
https://www.ncbi.nlm.nih.gov/pubmed/15800431

I wanted to show what rotation or thoracic torsion looks like and the CT is the best way to see. Not too many of these MRI's are floating around....Also, it addresses another severity of scoliosis, the other dimension that you don't see on x-rays.....Notice how my screw heads are buried deep below the surface of my skin, yet some patients can have them protrude from the surface. The torsion is a subject that isn't discussed often, here is a little something on gravity induced torque in scoliosis.
https://journals.lww.com/spinejournal/Abstract/2008/01150/Gravity_Induced_Torque_and_Intravertebral_Rotation .23.aspx

UHMW is an incredibly strong material. Its 10-15 times stronger than steel. Put it this way, those tethers are not rubber bands. Millions of people have UHMW implanted in them for various reasons. I would love to look at the hardware, was it shown to you? They produce different shapes and braided cords. I don't know who is making the hardware? Zimmer perhaps, here is a site that will explain some things about this material.
https://www.dsm.com/markets/medical/en_US/products-page/products-uhmwpe-fibers/dyneema-purity-radiopaque-fiber.html

Ed

burdle
08-30-2018, 04:47 AM
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.

It is interesting that the prevailing thought from the medics STILL seems to be that scoliosis doesn't cause pain yet every VBT case I have read or followed has had the pain diagnosis confirmed and moreover that the VBT procedure would and did favourably address it. Why are the guys in the fusion world still allowing the statement that scoliosis doesn't cause pain?

Pooka1
08-30-2018, 05:43 AM
i don't actually know if most surgeons are still saying scoliosis doesn't cause pain.

In general, to the extent that only very few cases reach surgical territory and maybe only very large curves tend to be painful (based on my daughters), it might be the case that 99+% percent of scoliosis cases do not cause pain. Maybe they are hanging their hat on that.

Pooka1
08-30-2018, 05:50 AM
The other thing I wanted to amplify from earlier comments was that fused kids may not realize they have a decreased ROM. They feel normal and don't notice they have lost ROM.

My daughter claimed she did not have restricted motion after her T4-L1 fusion. I asked her to bend and flex in all three planes. The only noticeable difference from what I could do is she had only about 50% of the lateral ROM that I did. But I guess because she has no reason to bend laterally, she never realized this. That is why my kids claim they feel normal after fusion. Not sure this is the case with lumbar involvement but it seems to be the case with these two T4-L1 fusions.

The poster boy for amazing ROM after fusion is Ed. Those sitting rotations are amazing and nobody would guess he was fused.

Dingo
08-30-2018, 10:06 AM
It is interesting that the prevailing thought from the medics STILL seems to be that scoliosis doesn't cause pain yet every VBT case I have read or followed has had the pain diagnosis confirmed and moreover that the VBT procedure would and did favourably address it. Why are the guys in the fusion world still allowing the statement that scoliosis doesn't cause pain?

Yep. Scott's pain began somewhere after 30° and probably before 40°. I wonder if that's a common threshold.
It wasn't that it hurt all the time. But physical work, long walks or standing became uncomfortable and then if he didn't stop it became painful.

Dingo
08-30-2018, 10:19 AM
https://journals.lww.com/spinejournal/Abstract/2008/01150/Gravity_Induced_Torque_and_Intravertebral_Rotation .23.aspx

That rotation study is gold! It's an interesting way to look at it.

Step 1) S curve.
Step 2) Gravity rotates the spine.
Step 3) Rib hump.

Now I understand how correcting the S curve with tethering may help the rotation. As the S curve diminishes so do the gravitational forces that produce the rotation. Super interesting!

By the way I don't see any bending and twisting pics after full fusion at this link. Am I doing something wrong?
http://www.scoliosis.org/forum/showthread.php?10303-twisting-limitations-with-full-fusion.&highlight=

burdle
08-30-2018, 12:07 PM
i don't actually know if most surgeons are still saying scoliosis doesn't cause pain.

In general, to the extent that only very few cases reach surgical territory and maybe only very large curves tend to be painful (based on my daughters), it might be the case that 99+% percent of scoliosis cases do not cause pain. Maybe they are hanging their hat on that.

A registrar said it doesn't to my face at RNOH in UK - needless to say I wasn't impressed.

Also a link was posted recently that still suggested this- will try to find it.

titaniumed
08-31-2018, 01:30 AM
Now I understand how correcting the S curve with tethering may help the rotation. As the S curve diminishes so do the gravitational forces that produce the rotation. Super interesting!

By the way I don't see any bending and twisting pics after full fusion at this link. Am I doing something wrong?
http://www.scoliosis.org/forum/showthread.php?10303-twisting-limitations-with-full-fusion.&highlight=

7.5 Newton meters is 5.5 Ft-lb's torque or "rotational force" on each vert in the standing position. They don't mention curve size or weight. The interesting thing is that the rotation differs and at the apex, its at its worst. Ribs also conform, some worse than others. I had a thoracic hump similar to Scott's in the photo, not as bad as some rib humps that produce a sort of large ridge, some patients undergo thorocoplasty to have this reduced. The tethering will help stop this deformation which can continue into adulthood. Even though some curves can hold, most of our curves progress at slow rates. Large curves look painful...well, I can vouch for that.

Laying down gives us a big break, now you can see why. Scoliosis curve is one thing, rotation adds to the reduction of nerve pathways which cause incredible amounts of pain. Its a double whammy. There is no rotation in kyphosis, and no rotational correction in minimally invasive scoliosis surgery per Dr Anand.

The photos are gone due to software updates on the NSF server. At some point, I will need to take another series of photos and probably start another thread. All the Benny Hill videos were lost. How depressing. The most important thing about all of this has to do with laughter, because when we are laughing, the pain ceases.....

I am having trouble remembering pain when I was younger as many years have passed. Recovery from pain events happens faster when younger vs older. The thing is that I do remember using infra rub at age 22, and had inversion boots at age 23, so I guess I was experiencing pain. I did block a lot of it out mentally through the years.....Its something we get used to.

Ed

Dingo
08-31-2018, 10:45 AM
Scott was diagnosed with a small Syrinx inside one vertebrae just below his neck prior to tethering surgery. A second MRI with contrast was ordered to make sure it wasn't dangerous. They determined that it wasn't.

And here comes the research...

This study found that out of 504 infants and juveniles that were diagnosed with scoliosis 94 or 18.7% had intraspinal anomalolies.
The prevalence of intraspinal anomalies in infantile and juvenile patients with “presumed idiopathic” scoliosis: a MRI-based analysis of 504 patients (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4847178/)

Total number of neural abnormalities detected on preoperative MRI evaluation: 94
Isolated Arnold-Chiari malformation: 43 (45.7 %)
Arnold-Chiari malformation combined with syringomyelia: 18 (19.1 %)
Isolated syringomyelia: 13 (13.8 %)
Tethered cord combined with diastematomyelia: 6 (6.4 %)
Diastematomyelia: 6 (6.4 %)
Tethered cord: 4 (4.3 %)
Intrinsic spinal cord tumor: 3 (3.2 %)
Syringomyelia combined with tethered cord and tumor: 1 (1.1 %)

If the syrinx caused Scott's Scoliosis I think he would have been considered to be in the Isolated Syringomyelia (https://www.healthline.com/health/syringomyelia) category. Although he had a syrinx, it was inside only one vertebrae and wasn't officially diagnosed as Syringomyelia (a more extreme case of the same basic thing I believe).

It's also possible that the syrinx may have been a consequence and not the cause of Scott's scoliosis. They didn't know.

Missed Diagnosis of Syrinx (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3302909/)
Syrinxes usually result from lesions that partially obstruct cerebrospinal fluid flow . At least half of syrinxes occur in patients with congenital abnormalities of the craniocervical junction (e.g., herniation of cerebellar tissue into the spinal canal, called Chiari malformation), brain (e.g., encephalocele), or spinal cord (e.g., myelomeningocele)

Dingo
08-31-2018, 04:21 PM
The photos are gone due to software updates on the NSF server. At some point, I will need to take another series of photos and probably start another thread. All the Benny Hill videos were lost. How depressing. The most important thing about all of this has to do with laughter, because when we are laughing, the pain ceases.....

You can post them on www.imgur.com and link to them from anywhere. You can include descriptions and a lot of people around the world will probably see them. Your X-ray is amazing!

Dingo
08-31-2018, 04:28 PM
A registrar said it doesn't to my face at RNOH in UK - needless to say I wasn't impressed. Also a link was posted recently that still suggested this- will try to find it.

burdle, you seem to know more about tethering than anyone on the forum. Do you work in healthcare?
Also you are in the UK? Do they do tethering in the UK yet?

Pooka1
08-31-2018, 05:16 PM
burdle, you seem to know more about tethering than anyone on the forum. Do you work in healthcare?
Also you are in the UK? Do they do tethering in the UK yet?

I think she is on the closed FB group. Now that your son has been tethered I think that group would love to have you join.

I direct people there. You and burdle are the only ones here with any knowledge at this point.

titaniumed
08-31-2018, 10:27 PM
You can post them on www.imgur.com and link to them from anywhere. You can include descriptions and a lot of people around the world will probably see them. Your X-ray is amazing!

True. But I would rather keep my stuff on the NSF server.

On the TV program "In Living Color" you remember when Wanda (Jamie Fox) mentions that she wants to keep her stuff sacred?

Its kinda like that.

I am laughing so hard, I broke something, I just know it. (smiley face)

Everyone have a great Labor day weekend!

Ed

burdle
09-10-2018, 06:28 AM
burdle, you seem to know more about tethering than anyone on the forum. Do you work in healthcare?
Also you are in the UK? Do they do tethering in the UK yet?

I am on the VBT FB groups - the UK one and the VBT ones.

They do do tethering in UK but it is only for sefpay - there are rumours that there will soon be a trial. and may then be available in NHS You will find the VBT groups very helpful


I am on them because I do a lot of voluntary work with challenging the status quo regarding VBT and treatment of scoliosis in UK and so I feel it is important that everyone is informed about the options and constraints.

I am also passionate about debate- you may find that the FB groups do not welcome this but you are probably not planning to debate much? They do not welcome debate as primarily they are for support. That is why I urge this forum to get VBT mentioned both on the static pages and in the forum posts.

Pooka1
09-10-2018, 09:10 AM
That is why I urge this forum to get VBT mentioned both on the static pages and in the forum posts.

The emphasis on this group seemed to be bracing and PT... non-surgical approaches. I have tried to bring perspective to the bracing debate here and got pushback form parents, not the administration I have to say.

This forum was openly non-supportive of stapling discussion so I am not surprised that the VBT people didn't come here. At this point, the FB groups have the critical mass and I doubt it could be established here.

burdle
09-11-2018, 06:02 AM
The forum is called 'National Scoliosis' so its sets its scope in the name. It really should be up todate with information regarding VBT . As I have said many time before Facebook is not for debate at least not the ones for Scoliosis and VBT- they are more for support.

It is great here when people post links to studies and research etc. You don't get that elsewhere- I have not come accoss anyone on FB who has heard of BRAIST study! By not having information about VBT the fourm is doing a disservice to anyone who newly discovers Scoliosis. Surely the SITE should be uptodate?

Pooka1
09-11-2018, 11:39 AM
Well the community is the community and there is no should about it. If they don't want anything but support then that is that.

And not hearing about Braist is no big loss what with. 49* curve with up to 25% growth remaining being counted as a bracing "success". I understand having that endpoint but they should have stated how many kids were north of 40* at the end and subtract those from the successful group and the dose-response curve.

It is interesting to note I heard a scoliosis surgeon on Doctor Radio who failed to mention Braist even after it was published.

burdle
09-14-2018, 05:29 AM
Well the community is the community and there is no should about it. If they don't want anything but support then that is that.

And not hearing about Braist is no big loss what with. 49* curve with up to 25% growth remaining being counted as a bracing "success". I understand having that endpoint but they should have stated how many kids were north of 40* at the end and subtract those from the successful group and the dose-response curve.

It is interesting to note I heard a scoliosis surgeon on Doctor Radio who failed to mention Braist even after it was published.

My point is that support is all very well but support that is purely anecdotal can be dangerous and not helpful. Not hearing about BRAIST study rsults in endless posts asking for screening early for scoliosis because they all think that early sceening means early intervention which is doesn't and even if it did thinsgs like BRacing need to be researched. They all assume an early brace and all will be well etc et.

Hearing about BRAIST and what it considers a success is my point not what the study actually concluded.

Pooka1
09-14-2018, 08:02 AM
My point is that support is all very well but support that is purely anecdotal can be dangerous and not helpful. Not hearing about BRAIST study rsults in endless posts asking for screening early for scoliosis because they all think that early sceening means early intervention which is doesn't and even if it did thinsgs like BRacing need to be researched. They all assume an early brace and all will be well etc et.

Hearing about BRAIST and what it considers a success is my point not what the study actually concluded.

You know this and I know this but we aren't going to convince people who don't value facts to care. I have been on this group for years and have run into any number ofr people who don't value facts. I don't think I made a dent in the problem.

Reason and ration are never going to sway people who don't value reason and ration as an approach to issues. We are completely disarmed. I have learned that hard truth from the evolution/creationism "debates" which are not debates because there is only one rational side who appeals to facts.

When we only had bracing, it was impossible to justify early screening. Now that there is tethering which can be done on large curves, it is still hard to justify early screening but it is slightly more justifiable so nobody misses the (large) tethering window.

This issue of expecting lay people to know and understand the limitations of the literature is probably 10 bridges too far, especially in the US where we have a young earth creationist running the Dept. of Ed (DeVos) who is actively undermining science education in favor of religious nonsense. With almost half of the US populace thinking the earth is a few thousand years old, we are a laughing stock to most of the educated world. This issue of scoliosis treatments is of a piece with this war on facts and science and rationality itself.

You can't get blood from a stone.

burdle
09-15-2018, 01:10 PM
You know this and I know this but we aren't going to convince people who don't value facts to care. I have been on this group for years and have run into any number ofr people who don't value facts. I don't think I made a dent in the problem.

Reason and ration are never going to sway people who don't value reason and ration as an approach to issues. We are completely disarmed. I have learned that hard truth from the evolution/creationism "debates" which are not debates because there is only one rational side who appeals to facts.

When we only had bracing, it was impossible to justify early screening. Now that there is tethering which can be done on large curves, it is still hard to justify early screening but it is slightly more justifiable so nobody misses the (large) tethering window.

This issue of expecting lay people to know and understand the limitations of the literature is probably 10 bridges too far, especially in the US where we have a young earth creationist running the Dept. of Ed (DeVos) who is actively undermining science education in favor of religious nonsense. With almost half of the US populace thinking the earth is a few thousand years old, we are a laughing stock to most of the educated world. This issue of scoliosis treatments is of a piece with this war on facts and science and rationality itself.

You can't get blood from a stone.


Agreed but this is why it us important to have a place where people can get uptodate accurate info. this is why I said that this site which asks for donations in the name of scoliosis needs to have the latest facts available for those seeking them. Facebook does not provide this and groups can be run by egos.
This site as ‘National Scoliosis’ should have this. It should get rid of the article where the doctor says scoliosis doesn’t cause pain - no one involved in treatment of scoliosis supports this without a caveat reading early days and small curves which need no treatment and also get some reference to VBT on it.People should not have to have to use FACEBOOK and negotiate the ‘hugs and kisses’ to get access to information.

Pooka1
09-15-2018, 01:28 PM
Yes you are right, Burdle. All of that should be the case.

Regarding NSF, name aside, this is one random man's forum and he runs it the way he likes. He decides what is posted in the information section and what isn't. He has no science training that I know of. He is a lay person. He bases it on his personal experience and that of his children. In other words, all anecdote. If we don't like it we can make our own group I suppose.

titaniumed
09-15-2018, 02:41 PM
Sigh.....Well, I do have the comical answer....Wow!
https://www.youtube.com/watch?v=79BJN4lfTA8

Scoliosis can be pain free or can cause pain....California can be fire free, or burn for months. But California is not fire free.....and scoliosis causes pain. I think this is an old school thought that needs to be changed....I think it was used many years ago to keep parents calm.

The tethering information needs to be updated, and followed, and results need to be posted. Its positive even if the tethers break. If you can go 22 months for a full remodel, (I believe a bone scientist quoted 22 months here years ago) you have a large part of the process nipped entering adulthood when growth stops. Its a great idea. I wonder who came up with this? They used coil pull springs in Poland many many years ago which was a disaster per the Moe handbook. But they had the concept...... I found an x-ray of this attached below from around the WW2 era.

Facebook has reported that FB users are dropping like flies since the Cambridge Analytica scandal in March. Of course, FB has all sorts of other platforms to generate sales. Instagram Etc....
Privacy is a thing of the past.....I am wondering when we will be required to have our ID chips inserted? I have my rods, that should be good enough for identity. Ha!
Biometrics technology has advanced over the years, they can ID a moving person with video now. The systems will know who is where and when just like in the T2 movie.

They examine gaits for example, this might be a way to identify scoliosis kids in school automatically with the right software. Pros and cons......

Apple just launched a watch to detect when you fall down and it will call an ambulance. I don't think I will wear it when I am skiing (smiley face)

Ed

Dingo
09-15-2018, 03:07 PM
The tethering information needs to be updated, and followed, and results need to be posted. Its positive even if the tethers break. If you can go 22 months for a full remodel, (I believe a bone scientist quoted 22 months here years ago) you have a large part of the process nipped entering adulthood when growth stops. Its a great idea. I wonder who came up with this? They used coil pull springs in Poland many many years ago which was a disaster per the Moe handbook. But they had the concept...... I found an x-ray of this attached below from around the WW2 era.

TitaniumEd you are a gold mine! That X-Ray from Poland is amazing! Scientists must have been thinking about this for a very long time.

I'm not sure who is officially credited with the concept of tethering, I'll ask Dr. Newton at our 6 month checkup.
To the best of my knowledge Dr. Newton published the first study on tethering back in 2002.
2002: Asymmetrical flexible tethering of spine growth in an immature bovine model. (https://www.ncbi.nlm.nih.gov/pubmed/11923660)

The first child to receive tethering was an 8.5 year old but she wasn't a patient of Dr. Newton.

After promising results in animal studies, the first reported human case was an 8.5-year-old patient. The patient’s 40° thoracic curve was initially corrected to 25° after index surgery. The curve progressively corrected to 8° during the follow-up of 48 months

Study here: Growth modulation by means of anterior tethering resulting in progressive correction of juvenile idiopathic scoliosis: A case report (https://pdfs.semanticscholar.org/8ae1/9c17782f483f3baeb20177e47e09c895d6c6.pdf)

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

Pooka1
09-15-2018, 04:08 PM
They examine gaits for example, this might be a way to identify scoliosis kids in school automatically with the right software. Pros and cons......

Ed

Maybe they can train horses to do this. My horse recognizes me from far away by how I walk as far as I can tell.

Animals are amazing. Pigeons can be trained to spot cancers on thin section and can differentiate good art from bad art. So smart!


https://www.youtube.com/watch?v=Ma-qZ2kwiFU

http://www.sciencemag.org/news/2015/11/pigeons-spot-cancer-well-human-experts

https://www.telegraph.co.uk/news/newstopics/howaboutthat/5724883/Pigeons-can-tell-good-art-from-bad.html

titaniumed
09-16-2018, 03:53 PM
My horse recognizes me from far away by how I walk as far as I can tell.


Sharon, I would think sounds, vibrations and vocals first, then body language (stance and walking). The challenge is getting the horse to deal you a blackjack. I think this is possible.

Its a shame that in the school system, nothing is taught about animals....ALL animals. (sad face). How many animals are there? How many bears are in Tahoe? Thousands. I don't carry a gun or bear spray and I've run into some BIG black bears in neighborhoods....I'm talking Yogi sized, not Boo Boo.

If one wants to see black bears in the wild with a 2 minute wait, go to the Albee campground in the Rockefeller grove of the California Redwoods Sept 20th through Sept 30th. (That's right now!) There is an Apple orchard there from the 1860's, you can watch them eat ripe apples. 4 per minute for 30 minutes is the average rate. When they poop, it comes out as apple strudel. Ha ha They walk right by you.

I will e-mail the Pigeon video to Crystal since she had a little bit of an early struggle with histology, and histopathology many years ago in med school. She will get a big kick out of it. Ha ha

Ed

titaniumed
09-17-2018, 12:25 AM
TitaniumEd you are a gold mine! That X-Ray from Poland is amazing! Scientists must have been thinking about this for a very long time.


Thanks Dingo, We do know that the concept was applied after WW2. The concept probably goes back thousands of years.

Small coil springs are made from music wire, or piano wire. Its a high carbon spring steel, tough as can be, but if it has carbon, it will rust. A non-biocompatible material. They probably used a plated spring, my guess would be zinc.....Sigh The history of biomaterial science started after these springs were used. Early 1950's I believe. Infection must have happened quickly....What has happened in the last 120 years is just amazing. The industrial revolution, the invention process, Edison as a prolific inventor, (catalyst) perhaps triggering or stimulating the modern invention process....

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

https://www.dsm.com/content/dam/dsm/cworld/en_US/documents/brief-history-biomedical-materials-en.pdf


Science direct... History of spine deformity (At bottom, keep clicking for next article)
https://www.sciencedirect.com/science/article/pii/S2212134X15001756

Dr Moe. He made it happen in Minneapolis. SRS
https://www.sciencedirect.com/science/article/pii/S2212134X15001744

Another gem is Dr Harrington's first rod. Seeing those polio's must have killed him and he just had to do something. See attached below.

All of the combined history was so important for the advancement of scoliosis technology. All the doctors, and patients, who paid so dearly. To have a taste of major scoliosis surgeries today and think about what happened in the past is a really hard thing.......I don't know what words to use, perhaps sombering? to dodge the bullets of old technology and come through ok just leaves me so appreciative....

This advancement into tethering wouldn't have happened without this.

They actually did direct blood transfusions without knowing blood types back in the old days....If you look through all the articles you will see this. Talk about a hard learning curve.

I think that most people out there take this for granted....Its hard for me to walk through the doors of a hospital and not think about all of this.

How is Scott feeling now? What is he saying?

Ed

burdle
09-17-2018, 03:56 AM
Yes you are right, Burdle. All of that should be the case.

Regarding NSF, name aside, this is one random man's forum and he runs it the way he likes. He decides what is posted in the information section and what isn't. He has no science training that I know of. He is a lay person. He bases it on his personal experience and that of his children. In other words, all anecdote. If we don't like it we can make our own group I suppose.

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...

Pooka1
09-17-2018, 08:48 AM
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.

burdle
09-20-2018, 06:21 AM
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.

Pooka1
09-22-2018, 06:56 AM
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.

Dingo
09-23-2018, 11:08 AM
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) (http://www.spinalsurgerynews.com/2017/04/non-fusion-scoliosis-treatment/19218) his 1 year visit will be the most informative.

titaniumed
09-23-2018, 08:17 PM
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

burdle
09-24-2018, 04:35 AM
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.

Pooka1
09-24-2018, 06:50 AM
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.

Dingo
09-24-2018, 09:35 AM
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.

Dingo
09-24-2018, 09:38 AM
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.

Dingo
09-24-2018, 09:49 AM
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!

titaniumed
09-25-2018, 12:27 AM
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/en_US/products-page/products-uhmwpe-fibers.html

Ed

Dingo
09-25-2018, 08:07 PM
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.

titaniumed
09-25-2018, 11:38 PM
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

Dingo
10-04-2018, 11:27 AM
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 (http://www.scoliosis.org/forum/showthread.php?15940-Tethers-commonly-break-1-to-2-years-after-VBT-procedures)

Dingo
10-04-2018, 11:51 AM
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. (https://www.ncbi.nlm.nih.gov/pubmed/24921854). 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.

titaniumed
10-04-2018, 11:56 PM
Since most members here on this forum are adults, and being a fused adult myself, I wasn't thinking about growth......(It doesn't come naturally anymore, you might say I have a "fused" state of mind) Ha ha

And how much does a 12 yr old grow? Quite a bit. Now, I can see why these tethers are breaking. I can also see this causing some anxiety....

How did Scott take all of this? I'm sure he completely understands the process.

Is there any reason to wear a soft brace during the day time for 2 years? Was this topic brought up with your surgeon?

Thanks for posting the data.

Ed

Pooka1
10-05-2018, 07:04 AM
If tethering requires a brace then it is going to defeat the purpose of not needing a brace. Tethering certainly appears so far to be more effective than bracing and I hope the materials science guy figure out the optimal properties needed soon.

When they work out the details, tethering is going to be the death knell to bracing. Eventually only kids who can't go through surgery will be braced. That is my prediction.

In re the commentary about waiting to see what happens with tethering, I was reminded of Lonner saying he sat on the sidelines for 5 years watching the tethering because he had concerns. But then he started doing them. Whatever his concerns were they seemed to have been answered. Or maybe too many of his patients were demanding the procedure.

If my daughters had lumber scoliosis now, I would demand tethering. Not so sure what I would do if they had thoracic like they really had.

titaniumed
10-05-2018, 09:21 AM
If tethering requires a brace then it is going to defeat the purpose of not needing a brace.

Sharon, true, but soft brace until the correction has remodeled.....after that happens, then the tethers can break. I believe a full bone remodel is 22 months.....Soft tissues remodel also, but I don't know that time frame. Discs remodel in scoliosis patients, that was in one of the studies in the Cotrel white book I posted last week.

I still think that using cables instead of a solid cord is an idea worth considering. Post #71. Using multiple cables per level is also worth consideration. Thinking about suspension bridges with multiple dynamic cable systems. Suspension bridges are built to sag under stress loads without failure. The main cables support the deck with many smaller cables, that all give together. Ideas happen through concepts. Knowing what works in another application can be of high value. Luque wire systems use multiple wires, not one larger wire. Sewing up soft tissues utilizes multiple strands with multiple attachment points to hold two areas together. The stress is always distributed.

I am sick with either a cold or the flu. AGAIN! I went and had a flu shot yesterday and my body is exhausted fighting what needs to be fought. I am whooped!

Since I am the first one that has gotten sick, I have nobody to blame. (smiley face)

Ed

Dingo
10-05-2018, 02:23 PM
Sharon, true, but soft brace until the correction has remodeled.....after that happens, then the tethers can break. I believe a full bone remodel is 22 months.....Soft tissues remodel also, but I don't know that time frame. Discs remodel in scoliosis patients, that was in one of the studies in the Cotrel white book I posted last week.

Scott gets his brace off in about 30 days but it's not a normal Scoliosis brace. It's 2 pieces of plastic held together by 6 velcro strips. It isn't meant to mold his body or correct a curve. It is a semi-loose "turtle shell" that protects kids in case they fall and things like that.

Scott is definitely tired of wearing it, but it's not that bad. He comes home, takes it off and lays down for an hour after school. Then he puts it back on until bed time. Then he takes it off again and sleeps for the night.

If he absolutely had to wear it for a year or two it would be doable. But... thankfully I don't think we will need to.

Dingo
10-05-2018, 02:40 PM
How did Scott take all of this? I'm sure he completely understands the process.

Is there any reason to wear a soft brace during the day time for 2 years? Was this topic brought up with your surgeon?

Those are the kinds of studies that give his mother and I heart attacks but Scott has never shown any particular worry or concern about his Scoliosis. He doesn't even talk about it and we're glad about that. He can leave the 24/7 worrying up to us. hahaha

According to that study the tethers are rated at 3000 Newtons which means they can hold about 650 pounds each! That's probably why this girl was doing full blown gymnastics just 12 weeks after VBT surgery! Mackenzie Haar 12 weeks Post VBT surgery (video) (https://www.youtube.com/watch?v=WfWsHVwOS78)

But in my opinion that's absolutely crazy. Although those tethers are incredibly strong they wear out quickly. Because of that Scott is going to spend a lot of time in front of his computer until he is 18. 8-)

All rotation exercises are done forever but we are going to start lifting weights next week. We are going to focus on exercises that grow his chest and don't involve any bending or twisting. We want to get 100% of our mileage out of these tethers.

The reason we're going to focus on chest exercises is because at Scott's age exercise can increase the final adult size of his rib cage which may in turn may help control his curve to a greater degree. Bigger is better!

Dingo
10-05-2018, 04:15 PM
I still think that using cables instead of a solid cord is an idea worth considering. Post #71. Using multiple cables per level is also worth consideration. Thinking about suspension bridges with multiple dynamic cable systems. Suspension bridges are built to sag under stress loads without failure. The main cables support the deck with many smaller cables, that all give together. Ideas happen through concepts. Knowing what works in another application can be of high value. Luque wire systems use multiple wires, not one larger wire. Sewing up soft tissues utilizes multiple strands with multiple attachment points to hold two areas together. The stress is always distributed.

Dr. Newton (and probably other surgeons) have been working on tethering since at least 2002. Most of this took place outside the public eye. I wouldn't be surprised if they've got a half dozen improvements like what you mentioned in the pipeline right now.

A new partial fusion device is being tested in children as we speak.

Preservation of Spine Motion in the Surgical Treatment of Adolescent Idiopathic Scoliosis Using an Innovative Apical Fusion Technique: A 2-Year Follow-Up Pilot Study. (https://www.ncbi.nlm.nih.gov/pubmed/30276104)

titaniumed
10-06-2018, 09:13 AM
Scott gets his brace off in about 30 days but it's not a normal Scoliosis brace. It's 2 pieces of plastic held together by 6 velcro strips. It isn't meant to mold his body or correct a curve. It is a semi-loose "turtle shell" that protects kids in case they fall and things like that.

Scott is definitely tired of wearing it, but it's not that bad. He comes home, takes it off and lays down for an hour after school. Then he puts it back on until bed time. Then he takes it off again and sleeps for the night.

If he absolutely had to wear it for a year or two it would be doable. But... thankfully I don't think we will need to.

I had a clam shell or turtle shell brace for my surgical recoveries. This was cast before my surgeries, and then after my surgeries, I grew 4 inches and had a huge ileus. Needless to say, it did not fit well at all. I guess it offered some protection....my efforts were mainly about not falling, and no BLT's, or lifting which is not a great idea when trying to fuse.

The soft brace I am referring to would be called a corset brace. This was the most comfortable to wear, I used it for skiing years ago. It offers some level of protection, and would restrict or slow down any quick types of impulsive moves that might be damaging. Kids do these quick types of movements often. You would have to throw it by your surgeon and see what he thinks. (See attached photo below) They are around $45 ea. If the tethers are breaking at roughly 2 years, it would be nice to know why they are breaking. It would seem logical to try to preserve the tethers. Going in and doing a floor routine 3 months after had to have everyone cringing.

Ed

titaniumed
10-06-2018, 10:33 AM
Scott has never shown any particular worry or concern about his Scoliosis. He doesn't even talk about it and we're glad about that.

Oh...but he is thinking about it. Seriously thinking about it.

Kids might not be the most communicative types..... especially around parents. There is a LOT going on, and we wonder about what is going to happen. That's our main worry.

I went through an anger phase which completely locked me up....it was when I realized that I had to accept what was happening that the anger phase quelled. These feelings went back and forth for a bit when I was a teen. It was quite a battle. Scoliosis and High School DO NOT go well together.....Peer pressure, Locker room antics, bullying, not being able to throw a discus a mile, that sort of thing. Boys are quite physical and some boys can be animals.

I mentioned the corset brace as a measure of protection. BUT, the minute you have a corset on in the boys locker room, the attacks will begin, that's guaranteed. You can see how complicated this all gets. This is just an example. Some comments we hear will not get repeated, parent or not. Comments like spineless jellyfish.....funny that the person that mentioned this to me in 1975 now has a daughter with scoliosis.

The psych ramifications of teen scoliosis are really hard on us. On a positive note, this all passes in time... it all gets worked out. We might have a harder outside shell after all of this, but we are all very soft inside.

Ed

burdle
10-07-2018, 10:17 AM
Just dipping in again...

Most doctors - ie Antonacci, Betz , Cuddihy , Alanay and the ones in Europe do not use Bracing as a general rule after VBT. So maybe if bracing is required it is for short term protection. It can't be for holding a curve as in pre-fusion because VBT is precisely for allowing remodelling using growth,

having said that some of the surgeons doing ASC on a mature ( fully grown spine ) are sometimes using a brace for a short while after op.


VBT will replace bracing in so far as VBT is done before fully grown unlike fusion. Bracing may still be of some use if the child is very young and the curve is large ( in the 40*) because they don't use VBT too early in case of overcorrection which is a risk. So if you are still a very low Sanders score ( lots of growth left) they will wait and may suggest bracing then

Dingo
10-07-2018, 11:57 AM
Oh...but he is thinking about it. Seriously thinking about it.

Kids might not be the most communicative types..... especially around parents. There is a LOT going on, and we wonder about what is going to happen. That's our main worry.

I went through an anger phase which completely locked me up....it was when I realized that I had to accept what was happening that the anger phase quelled. These feelings went back and forth for a bit when I was a teen. It was quite a battle. Scoliosis and High School DO NOT go well together.....Peer pressure, Locker room antics, bullying, not being able to throw a discus a mile, that sort of thing. Boys are quite physical and some boys can be animals.

I mentioned the corset brace as a measure of protection. BUT, the minute you have a corset on in the boys locker room, the attacks will begin, that's guaranteed. You can see how complicated this all gets. This is just an example. Some comments we hear will not get repeated, parent or not. Comments like spineless jellyfish.....funny that the person that mentioned this to me in 1975 now has a daughter with scoliosis.

The psych ramifications of teen scoliosis are really hard on us. On a positive note, this all passes in time... it all gets worked out. We might have a harder outside shell after all of this, but we are all very soft inside.

Ed

I'm sure you are right on that, Scott keeps it to himself. Maybe that's an instinct.
He has been excused from PE so he doesn't have to worry about any locker room jabbing. His last day in the "turtle shell" brace is November the 6th. Technically speaking after that point he is released for all normal activities. But his days of Airsoft wars (https://www.youtube.com/watch?v=lu_jvDyJMYE) are over. haha

Dingo
10-07-2018, 09:02 PM
We did Scott's first chest workout tonight.

4 sets of 3 push ups
4 sets of 5, 5 pound dumbbell press
4 sets of 5, 5 pound pullover

Super super easy stuff at a very low weight just to get him used to form again. He said he didn't feel any pain or discomfort.

It's been 8 weeks since surgery and he's just about 100%.

We'll do light workouts through October and in November we'll get back to normal workouts.

titaniumed
10-08-2018, 07:08 PM
No discomfort at all. I am not surprised....

What is the exercise protocol? Is there some sort of written procedure of do's and dont's.


Ed

Dingo
10-08-2018, 11:08 PM
No discomfort at all. I am not surprised....

What is the exercise protocol? Is there some sort of written procedure of do's and dont's.


Ed

Dr. Newton wasn't really specific. He asked us the kinds of physical activities we might do and I told him lift weights. His general vibe was be gentle, careful, etc. etc.
Basically common sense stuff.

I did mention that we wouldn't do any more twisting exercises. He said at the very least we should wait 90 days before any twisting. I'm thinking more like 5 years. 8-)

titaniumed
10-09-2018, 12:20 AM
His general vibe was be gentle, careful, etc. etc.


I guess that leaves the 1000# Russian dead lift out. Can you imagine what is going on with their lumbar discs? Let alone blood pressure? Man-o-man!

When I did my shoulder PT, the therapist was afraid of my spine....It was just too much to gamble with. So, we started with motion exercises without weights, then progressed slowly in 1# increments.

I used the arm bike....starting with no resistance, forward and backward. Good for toughening up paraspinal's in fusion patients and does not change spine position much.

Which exercises would apply minimal stress to the tethers?

It would be neat to exercise under flourscopy to see what is happening inside.....

Ed

Dingo
10-09-2018, 09:56 AM
Which exercises would apply minimal stress to the tethers?

It would be neat to exercise under flourscopy to see what is happening inside.....

Ed

Scott put a rubber band between two pencils and then held each pencil in a fist. He positioned his fists one on top of the other like vertebrae.

1) Twisting created the most tension by far.
2) Side bending towards the rubber band reduced tension.
3) Side bending away from the rubber band increased tension a lot.
4) Rolling the fists forward or backward to simulate a forward/backward bending motion didn't change the tension very much if at all.

titaniumed
10-09-2018, 10:04 AM
Love it!

Ed

Dingo
10-18-2018, 03:50 PM
Clinical Trial: Anterior Vertebral Body Tethering (AVBT) Using Dynesys System Components to Treat Pediatric Scoliosis (https://clinicaltrials.gov/ct2/show/NCT03506334)

Estimated Enrollment: 25 participants
Primary Purpose: Device Feasibility
Official Title: Prospective Pilot Study of Anterior Vertebral Body Tethering Using Dynesys System Components to Treat Pediatric Scoliosis
Actual Study Start Date: April 25, 2018
Estimated Primary Completion Date: June 1, 2025
Estimated Study Completion Date: July 1, 2027

I believe they are testing this device for tethering. If you scroll to the bottom it looks like they might have a solid cord option in addition to their standard tether.
Dynesys® Dynamic Stabilization Product Family (https://www.zimmerbiomet.com/medical-professionals/spine/product/dynesys-dynamic-stabilization-system.html)

Scott is still doing great. His brace is off in less than 3 weeks.

titaniumed
10-18-2018, 10:12 PM
If you select technology, you will see that Dynesys was not intended for anterior tethering.....and is used in a posterior "Wiltse" approach....for single level in adults in the lumbar, used with grafting. Zimmer does not mention scoliosis....

Ed

Dingo
10-19-2018, 09:39 AM
If you select technology, you will see that Dynesys was not intended for anterior tethering.....and is used in a posterior "Wiltse" approach....for single level in adults in the lumbar, used with grafting. Zimmer does not mention scoliosis....

Ed

Yeah I think Dynesys was designed to be used in fusion but I'm not sure how. But I guess they're testing it for tethering.

burdle
10-22-2018, 04:12 AM
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/en_US/products-page/products-uhmwpe-fibers.html

Ed

They are now double tethering in some cases- this means 2 tethers for the same bit of spine- not the same as a single tether on 2 parts of spine. I think they double tether when the curve is large and there is a lot of growth left.

Pooka1
10-22-2018, 06:09 AM
Unless some long term issue arises, I predict tethering is going to replace bracing.

burdle
10-22-2018, 08:41 AM
Unless some long term issue arises, I predict tethering is going to replace bracing.

I have heard this and I think so too but bracing is 'conservative' and VBT is invasive and I think that from a medical point of view the physical is always considered before the mental.( it often being difficult psychologically to wear a brace)

They have to deflate the lung often with VBT because it is an anterior approach. A lot of the negativity about VBT is about this aspect of the procedure.

Those who do VBT are doing it to avoid having fusion. Although for a patient it could be seen as keeping options open for future for the surgeons it is an 'instead of'. from what I can tell it is only a few whose parameters are on the cusp for whom it is being suggested that it may just temporary and a fusion needed later. And surgeons are going to do a complete 'about face' if they adopt this because a lot of VBT doctors no longer perform fusion surgery on adolescents.

What I am fascinated about is that VBT seems to be a solution for pain- unlike fusion.

Dingo
10-22-2018, 10:01 AM
What I am fascinated about is that VBT seems to be a solution for pain- unlike fusion.

Yep, Scott's pre-surgery pain is gone. Before surgery it was getting worse at a steady rate. He feels normal again.

I remember when Dr. Newton explained the tethering procedure vs. fusion. When he was done I told him that it was a "no-brainer", we should choose tethering. He corrected me immediately. Paraphrasing his response, "Every surgery is risky. If tethering doesn't appear to have a good chance of success we won't do it." So although tethering may be a good procedure it has risks like any surgery. I think they use it as an alternative to fusion, not necessarily as an alternative to bracing in smaller curves.

Dingo
10-22-2018, 10:08 AM
From the study on 17 children who received tethering,

Anterior Spinal Growth Tethering for Skeletally Immature Patients with Scoliosis: A Retrospective Look Two to Four Years Postoperatively. (https://www.ncbi.nlm.nih.gov/pubmed/30277999)


There were 2 minor pulmonary perioperative complications following initial ASGT. One patient had atelectasis and perihilar effusion on postoperative day 1, which required continuous positive airway pressure (CPAP) at night and was
monitored in the intensive care unit (ICU) overnight. This improved by postoperative day 2. The other patient had atelectasis and pulmonary edema and was returned to the ICU for monitoring, chest therapy, intermittent positive pressure
breathing, and medical therapy. Both patients recovered and were discharged, on postoperative days 5 and 8.

The procedure is excellent and Dr. Newton is one of the best in the world. But despite that complications are common. It's not like getting your tonsils out.

burdle
10-23-2018, 06:25 AM
From the study on 17 children who received tethering,

Anterior Spinal Growth Tethering for Skeletally Immature Patients with Scoliosis: A Retrospective Look Two to Four Years Postoperatively. (https://www.ncbi.nlm.nih.gov/pubmed/30277999)



The procedure is excellent and Dr. Newton is one of the best in the world. But despite that complications are common. It's not like getting your tonsils out.

There is a lot of concern about where and how deep to place the screws I understand as very close to Aorta.

burdle
10-23-2018, 06:28 AM
I am so pleased to hear that Scott is pain-free. This aspect of the treatment should be highlighted because maybe it would stop orthos in general still putting it out that Scoliosis doesn't cause pain, which for a lot of patients not eligible for surgery causes a lot of psychological distress

Pooka1
10-23-2018, 07:37 AM
My one daughter with the fast moving curve had pain which went away after she was fused. She was hyper-corrected and does not technically have scoliosis any more (<10*). The other one did not have pain before or after fusion.

burdle
10-23-2018, 07:52 AM
My one daughter with the fast moving curve had pain which went away after she was fused. She was hyper-corrected and does not technically have scoliosis any more (<10*). The other one did not have pain before or after fusion.

Surgeons and consults should not still be saying that scoliosis doesn't cause pain. It is a meaningless sentence without context but it is still said and damages awareness and effective treatment for some. Some people do not have pain which is GREAT- however the effect of having a scoliosis is often pain

Dingo
10-23-2018, 09:53 AM
According to this study 40% of kids with Scoliosis have chronic back pain. That was true for Scott. Somewhere after 40° is when the pain started.

EVIDENCE OF IMPAIRED PAIN MODULATION IN ADOLESCENTS WITH IDIOPATHIC SCOLIOSIS AND CHRONIC BACK PAIN. (https://www.ncbi.nlm.nih.gov/pubmed/30343045)
Spine J. 2018 Oct 18

BACKGROUND CONTEXT:
Although 40% of adolescent idiopathic scoliosis (AIS) patients present with chronic back pain, the pathophysiology and underlying pain mechanisms remain poorly understood. We hypothesized that development of chronic pain syndrome in AIS is associated with alterations in pain modulatory mechanisms.

PURPOSE:
To identify the presence of sensitization in nociceptive pathways and to assess the efficacy of the diffuse noxious inhibitory control in patients with AIS presenting with chronic back pain.

STUDY DESIGN:
Cross-sectional study.

PATIENT SAMPLE:
Ninety-four patients diagnosed with AIS and chronic back pain.

OUTCOME MEASURES:
Quantitative sensory testing (QST) assessed pain modulation and self-reported questionnaires were used to assess pain burden and health-related quality of life.

METHODS:
Patients underwent a detailed pain assessment using a standard and validated quantitative sensory testing (QST) protocol. The measurements included mechanical detection thresholds (MDT), pain pressure threshold (PPT), heat pain threshold (HPT), heat tolerance threshold (HTT), and a conditioned pain modulation (CPM) paradigm. Altogether, these tests measured changes in regulation of the neurophysiology underlying the nociceptive processes based on the patient's pain perception. Funding was provided by The Louise and Alan Edwards Foundation and The Shriners Hospitals for Children.

RESULTS:
Efficient pain inhibitory response was observed in 51.1% of patients, while 21.3% and 27.7% had sub-optimal and inefficient CPM, respectively. Temporal summation of pain was observed in 11.7% of patients. Significant correlations were observed between deformity severity and pain pressure thresholds (P = 0.023) and CPM (P=0.017), neuropathic pain scores and pain pressure thresholds (P=0.015) and temporal summation of pain (P=0.047), and heat temperature threshold and pain intensity (P=0.048).

CONCLUSIONS:
Chronic back pain has an impact in the quality of life of adolescents with idiopathic scoliosis. We demonstrated a high prevalence of impaired pain modulation in this group. The association between deformity severity and somatosensory dysfunction may suggest that spinal deformity can be a trigger for abnormal neuroplastic changes in this population contributing to chronic pain syndrome.

titaniumed
10-23-2018, 10:37 PM
I remember when Dr. Newton explained the tethering procedure vs. fusion. When he was done I told him that it was a "no-brainer", we should choose tethering. He corrected me immediately. Paraphrasing his response, "Every surgery is risky. If tethering doesn't appear to have a good chance of success we won't do it." So although tethering may be a good procedure it has risks like any surgery. I think they use it as an alternative to fusion, not necessarily as an alternative to bracing in smaller curves.

A lot has to do with the patient and the parents....If someone is afraid of surgery, then bracing is an option. The minute something goes wrong, there is a ton of bricks each surgeon has to deal with, and they hate it when things go wrong. Bracing will always be around because its the easier alternative. There is nothing a surgeon can do if someone doesn't want surgery.

I am afraid that the tethering technology and the studies will take a few decades just like what happened with the pedicle screw and the CD system (Jan 1983) They will solve problems, but its not going to be tomorrow. I would like to see this happen soon since I waited so long.....They didn't have any long term results back then, it was all experimental.

Surgeons really need to go visit with hardware companies. (You know, medical Disneyland.....Ha ha) I would imagine that many different prototypes have been made that have been sitting on the back burner. A surgeon can go in and be a catalyst on a device.....

I still have my tonsils....so cant comment on that. But I have had complications from a tooth extraction. The easiest procedure would probably be something like stitching up a cut. I had around 15 stitches from a head wound (skiing) when I was 15, and I have to scratch this area multiple times per day. That was 45 years ago.

Scar tissue can present problems. Sometimes easy, sometimes not so easy. Scratching is easy.

Ed

burdle
10-24-2018, 04:13 AM
Hopefully VBT will go some way to stop the endless charlatans from alternative medicine from peddling their suits and miraculous hand on solutions that mysteriously they cannot provide evidence for.

VBT sounds like one solution for the early onset scoliosis cases and after that the possibilities are endless. I don't think it will be decades in US. Already Insurance companies are funding it in some cases- depending on what the surgeon puts on the forms I understand.

Dingo
10-25-2018, 05:45 PM
The easiest procedure would probably be something like stitching up a cut. I had around 15 stitches from a head wound (skiing) when I was 15, and I have to scratch this area multiple times per day. That was 45 years ago.

Scar tissue can present problems. Sometimes easy, sometimes not so easy. Scratching is easy.

Ed

Ya know about 20 years ago I had some stitches in my head and to this day I still get red bumps around the stitch area once in a while. Maybe a little less each year but it still happens.

Medical science definitely does not have 100% knowledge about the human body.

titaniumed
10-26-2018, 12:37 AM
Medical science definitely does not have 100% knowledge about the human body.

Oh, where do I start?

I had a friend die of cancer back in the 60's,(9 years old) and my mom got cancer a half century later. I waited for better scoliosis hardware over the years, and when the pedicle screw was introduced, I thought that was great, but that was a long time ago and only addresses a very small part of the overall scoliosis package. The human body is incredibly complicated.....My dad died of ALS 19 years ago and where are they on ALS? Perhaps another water bucket challenge?. ALS survivors don't get too excited over these things since I was run over by the truck. Run over by the Cancer truck, ALS truck, Scoliosis truck, Kleinfelters truck. I've been hit a few times, and I am tired of waiting. If anyone wants something to happen NOW, its me.

The last tethering study you posted is a 7 year study....and of course this is good news, but I want a miracle NOW! When you age, you get greedy for time. I don't have the time anymore and things are getting harder. With me, I ignore pain, but the dizzies and the headaches and being lethargic all seem to point in the direction of my spinal cord (in my neck). I have CNS related symptom's. Tingling and numbness are all part of the advanced scoliosis package. Many elder scoliosis patients know what I am talking about.

I got the flu on Oct 1st. Got the shot on Oct 4th while I was sick, which is a double whammy. The flu has been a constant problem for me over the last 3 years, I guess I have to move to the tropics. There is no influenza in the tropics but they have Dengue fever. Ha ha "The skeeters are after me!" I have to have some sort of joke....

Scientific medical study is something I consider to be an emergency. A national emergency, a global emergency. This is no joke.

We don't need another ice bucket challenge, we need a global Niagara Falls challenge. Increase the effort's 1000 fold. The money is out there....Also, medical students shouldn't have to be burdened with HUGE DEBT coming out of med school. This is seriously wrong and needs change right away. Why is this happening????

And in talking about a 1000 fold, here is an example of some good that's happening, I just had to mention. (Young people, you take charge!!! Do it now!)
https://www.theoceancleanup.com/system001/
https://www.cnn.com/2018/09/10/health/ocean-cleanup-test-trnd/index.html

Boyan is 24 years old.....He is setting a fantastic example.
https://en.wikipedia.org/wiki/Boyan_Slat

There are answers to medical dilemma's in the ocean. It's there, and we need to find it. Lets not destroy this opportunity and use a new school of thought moving forward.

I am a diver. I also grew up and worked in highly toxic Superfund sites. I really hate pollution, and I hate disease, and they go hand in hand.

Ed

Jinseeker
11-02-2018, 07:13 AM
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
11-02-2018, 08:16 AM
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.

Jinseeker
11-02-2018, 09:58 AM
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.

Despite of that Law, there is no evidence or published outcome yet I could find of someone getting tethered, then getting it removed and ending up with the corrections made happily ever after. I'd like you to show me published evidence. The only ones I could find are negative, with a great percentage ending up re-tethered or fused in a matter of 2-4 yrs. I don't think you'd want to keep going under the knife and worrying when a tether breaks, especially when you do not know if you remove the tethers the spine will remain straight. In this case fusion IMO is still a much more sane and rational option since at least you do know what to expect and don't expose the child to double the risk of more surgeries as a result.

I do not claim to think a tethered thoracic spine is no better than a fused one, I can only assume in the long run it is. There was a published survey online of which I could not find anymore for one of Baron Lonner's patients deciding whether he should fuse or do VBT on her. And a comment from Dr Bridwell hinted that in this patient's case, a selective thoracic fusion would be no better than VBT for physical activities since the thoracic part of the spine does not really affect flexibility and movement that much anyway. Bridwell also stated the dangers of instrumenting an unfused spine may eventually lead to breakage or wear and tear of the discs WITHIN the construct not the discs of the uninstrumented segments below, a video published on youtube from Dr. Baron Lonner himself ( https://www.youtube.com/watch?v=Q6mb4x5gZxE ) indicates this same concern about VBT. In his video explaining VBT you can clearly see, that no "remodeling" was even explained, and it seems the tethers are to remain for as long as ever and not meant to break, but yet it seems in the discussion here, the parent while certain of eventual breakage seems to have no qualms with it happening because she is reassured that her son will be totally fine when the spine will remain straight after it is finished remodeling when growth is complete.

On retrospect there was already an attempt to do the same, just look at this article here that tried to remove the growing rods after age 14 for children hoping that the spine will stay in place. https://www.ncbi.nlm.nih.gov/pubmed/28926385
Unfortunately it didn't. I know they were age 14 when the surgeons tried to hope for it, but still it doesn't sound promising even for someone age 18 or 20.

I also don't think you should underestimate the knowledge of non VBT practicioners, since after all they are surgeon themselves and have much more knowledge on mechanics and build of the human spine than you or I. They probably have researched VBT or have some knowledge about it before stating their opinions online.

It is also important to note that even with the tethers, saving the lumbar levels below from degeneration is still a theoretical one and not a certianty, an instrumented spine will never be the same pre-op. There's this video of Julia, a dancer from Britain's Got Talent and posterchild of spine associates who got VBT, although she is still flexible, she stated she couldn't do one of the backbend dance moves anymore after VBT. I also doubt how well can tethered patients twist with their spines not just bend compared to pre op.

Dingo
11-02-2018, 03:30 PM
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 (https://pdfs.semanticscholar.org/8ae1/9c17782f483f3baeb20177e47e09c895d6c6.pdf)


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.

Dingo
11-02-2018, 03:45 PM
Despite of that Law, there is no evidence or published outcome yet I could find of someone getting tethered, then getting it removed and ending up with the corrections made happily ever after. I'd like you to show me published evidence. The only ones I could find are negative, with a great percentage ending up re-tethered or fused in a matter of 2-4 yrs. I don't think you'd want to keep going under the knife and worrying when a tether breaks, especially when you do not know if you remove the tethers the spine will remain straight. In this case fusion IMO is still a much more sane and rational option since at least you do know what to expect and don't expose the child to double the risk of more surgeries as a result.

The tethers aren't commonly removed. They aren't long lived and simply break after a few years.

Although the initial results have been promising tethering is still an experimental procedure. Less than 1,000 children around the world have had VBT and only a handful of surgeons that work in the research community perform it. Long term studies are many years away.

Pooka1
11-02-2018, 05:50 PM
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.

Pooka1
11-02-2018, 05:58 PM
It is accepted that a fused thoracic puts more pressure on a lumbar curve often leading to extension of fusion.

That's true for fusions that go below about L1. If they end at L1 and above and the compensatory lumbar straightens enough, both Boachie and our surgeon say it can be a one and done T fusion. No extension required. My one daughter is a one and done. The other, though her fusion ends at L1, still has ~25* compensatory lumbar . For her I am hoping tethering will be ready if she needs it.


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.

Because there is more data on fusion and the ROM in the thorax is probably indistinguishable in real life between fusion and tethering.


I think currently the thinking is that leaving it in does no harm. It has nothing to do with lack of confidence.

But if even fused spines revert to some degree if the hardware is removed, wouldn't a tethered spine also revert somewhat?


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

If they aren't doing fusions it is because the volume of tethering has crowded it out due to demand. I don't view their not doing fusions as a decision that tethering is always better.

Pooka1
11-02-2018, 06:11 PM
In this case fusion IMO is still a much more sane and rational option since at least you do know what to expect and don't expose the child to double the risk of more surgeries as a result.

As a parent, I agree with you if talking about a T fusion that can end at L1 or above and the lumbar is expected to straighten. Then it is said to be one and done. I would choose that over tethering at present for that set of circumstances. I would choose tethering for all other circumstances.


And a comment from Dr Bridwell hinted that in this patient's case, a selective thoracic fusion would be no better than VBT for physical activities since the thoracic part of the spine does not really affect flexibility and movement that much anyway.

This appears to be the case based on my daughter's comments. She feels normal because people don't normally bend through the thorax. Even when she could only bend to the side about half as much as I could, she thought that was normal for people. So either she doesn't remember what it was like before fusion or she never has to bend beyond her fused ROM. She does scientific field work and has never noted a deficit. In fact I suspect the only time she realized she had a deficit was when I asked her to bend to the side. I feel a little guilty over that. She could have gone the rest of her life thinking she had normal ROM had I not done that.


I also don't think you should underestimate the knowledge of non VBT practicioners, since after all they are surgeon themselves and have much more knowledge on mechanics and build of the human spine than you or I. They probably have researched VBT or have some knowledge about it before stating their opinions online.

I agree with this. Lonner stated he sat out for FIVE YEARS watching VBT because he had serious concerns about the discs. Only then did he jump on the bandwagon.


It is also important to note that even with the tethers, saving the lumbar levels below from degeneration is still a theoretical one and not a certianty, an instrumented spine will never be the same pre-op. There's this video of Julia, a dancer from Britain's Got Talent and posterchild of spine associates who got VBT, although she is still flexible, she stated she couldn't do one of the backbend dance moves anymore after VBT. I also doubt how well can tethered patients twist with their spines not just bend compared to pre op.

According to that one study using pig spines and comparing normal to stapled to tethered, the side to side motion with tethered was less than staples IIRC. It was less than normal but I think it is more than fusion. Anyway none of it matters for thorax in my opinion.

Pooka1
11-02-2018, 06:15 PM
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.

If I was my daughter and faced with needing to do something in my lumbar years from now, I would choose tethering that may need to be redone several times over fusion of the lumbar.

Pooka1
11-03-2018, 11:14 AM
Here is a study showing decreased lateral bending away from the tether that agrees in general with the other pig spine study.

https://pdfs.semanticscholar.org/59f5/aa3e8875f8f52b664c496ad26b2be612aeb4.pdf

The other study showed tethers had about half the side to side ROM as staples (note large error bars).

https://www.ors.org/Transactions/57/0827.pdf

burdle
11-05-2018, 05:36 AM
Because there is more data on fusion and the ROM in the thorax is probably indistinguishable in real life between fusion and tethering..

This thoracic flexibility is precisely one of the reasons that they do VBT





[QUOTE=Pooka1;170788]
If they aren't doing fusions it is because the volume of tethering has crowded it out due to demand. I don't view their not doing fusions as a decision that tethering is always better[QUOTE=Pooka1;170788]


I don't think it is so much demand as insurance companies still not completely on board. I think it is more that the patients they see are all eligible for VBT and if they are eligible it is a better option

burdle
11-05-2018, 06:04 AM
I also don't think you should underestimate the knowledge of non VBT practicioners, since after all they are surgeon themselves and have much more knowledge on mechanics and build of the human spine than you or I. They probably have researched VBT or have some knowledge about it before stating their opinions online.

It is also important to note that even with the tethers, saving the lumbar levels below from degeneration is still a theoretical one and not a certianty, an instrumented spine will never be the same pre-op. There's this video of Julia, a dancer from Britain's Got Talent and posterchild of spine associates who got VBT, although she is still flexible, she stated she couldn't do one of the backbend dance moves anymore after VBT. I also doubt how well can tethered patients twist with their spines not just bend compared to pre op.

I disagree- I think the opinions of the non-VBT practitioners will be based on a lack of upto date information as is what is being demonstrated over and over again. I prefer to listen to the expert fusion surgeons like Betz et al who are now doing VBT. At the recent SRS meet there was very favourable response from the scoliosis community I am told from Alanay presentation.

Also the Julia Carlisle reporting is inaccurate- I have actually heard her say in interview that she could do everything she could before. what you may have heard is that she could do everything BUT one move almost immediately after surgery- emphasising how successful the surgery immediately was- but now months out she can do everything.

I personal think its a shame that VBT is being sort of suggested for kids who want to be gymnast or dancers but if you don't then preserving thoracic flexibility is not so important. I believe preserving as much natural movement of the spine is paramount because we don't know what is 'down the line' in our lives.

Pooka1
11-05-2018, 06:18 AM
If the two pig spine studies are at all relevant, the side to side ROM of tethering, especially opposite the tether is about 1/4 that of the normal spine. If the dancer says she can do everything then she wasn't bending side to side much in her dancing which makes little sense to me. OR, like my daughter and like Ed, you can still have a fairly large ROM even with a fusion. So her dancing may be in range of what she can do with the tether.

Look at the pictures of tethered spines. It is very easy to see why bending side to side and especially to the opposite side would be much less than normal. There is a very tight tether there. It is not elastic. It is less ROM than even staples per that one study.

Pooka1
11-05-2018, 06:25 AM
I disagree- I think the opinions of the non-VBT practitioners will be based on a lack of up to date information as is what is being demonstrated over and over again.

That is really not giving the other surgeons much credit. Look at Lonner who was following VBT for FIVE YEARS before he jumped in. He was following it and knew when he was comfortable jumping in.

As with Lonner who cited potential disc issues and never stated anything about doubting the short term results, nobody doubts the short term results. I suspect most are just being cautious about the long term especially w.r.t. the discs. Five years was enough for Lonner. Maybe others have a longer timeline to see what happens before they commit. Who knows. But the point is surgeons are sitting out BECAUSE they are following along, not because they aren't and are simply unaware.

Just as a side note, I heard a comment on doctor radio about only the cream of the cream in medical school are admitted into the orthopedic internships. So we are talking the smartest among smart people. There is little to no chance these people are ignorant of anything in their field. If they are not doing some procedure there is going to be a good reason as in Lonner's case.

titaniumed
11-05-2018, 07:51 AM
For Orthopedics, I have heard top 3%. This is after the USMLE is taken after 2 years of med school. Scores help determine the direction a doctor will take. If you score low, you can forget about brain surgery. (smiley face)
https://en.wikipedia.org/wiki/United_States_Medical_Licensing_Examination

There are many avenues of interest an orthopedic can take.....Not all are going to be interested in tethering....Not all Orthodontists do Clear Invisalign braces....

I believe it was Dr Winters who was a hand surgeon and was talked into scoliosis by Dr Moe when the SRS was founded back in the 60's.

I am guessing he found it quite interesting.

Ed

Pooka1
11-05-2018, 08:10 AM
Wow very interesting, Ed. Thanks for posting.

Dingo
11-05-2018, 08:30 AM
If tethering immediately began destroying discs and within a few years it caused serious problems that would be a deal killer.

However as a parent worried about Scoliosis if tethering caused Scott's discs to suffer more wear and tear and if by the age of 40 or 50 he may have disc problems I could live with that.

There is a lot of research on disc regeneration and maybe in 20 or 30 years that won't be a problem. In addition there are artificial discs available today.

Pooka1
11-05-2018, 10:57 AM
If tethering immediately began destroying discs and within a few years it caused serious problems that would be a deal killer.

However as a parent worried about Scoliosis if tethering caused Scott's discs to suffer more wear and tear and if by the age of 40 or 50 he may have disc problems I could live with that.

There is a lot of research on disc regeneration and maybe in 20 or 30 years that won't be a problem. In addition there are artificial discs available today.

I think you are right. I think tethering is going to pan out without disc damage. The fact that Lonner jumped in after so many years suggests to me he had seen enough to think it will pan out. I predict tethering will replace fusion in most cases. And these kids are going to feel normal. If my fused kid thought she had normal ROM then all these tethered kids are going to feel normal.

Dingo
11-05-2018, 03:47 PM
I think tethering is going to pan out without disc damage. The fact that Lonner jumped in after so many years suggests to me he had seen enough to think it will pan out. I predict tethering will replace fusion in most cases. And these kids are going to feel normal. If my fused kid thought she had normal ROM then all these tethered kids are going to feel normal.

I think so too. Even if tethering doesn't work for Scott and he is someday fused tethering bought him the time needed to reach his full spine/chest growth. It's worth it.

Dingo
11-05-2018, 06:58 PM
Video: M6 Artificial Disc Replacement (ADR) by Spinal Kinetics (https://www.youtube.com/watch?v=DP6OUfD4NP0)

This artificial disc is absolutely amazing. I can only imagine what artificial discs will be like in 20 or 30 years.

Hopefully by then they'll regenerate the discs with stem cells so that people can keep their original discs.

They're working on it right now.
DiscGenics Announces First Patient Treated in U.S. Clinical Trial of IDCT for Degenerative Disc Disease (https://www.discgenics.com/news-posts/2018/4/26/discgenics-announces-first-patient-treated-in-us-clinical-trial-of-idct-for-degenerative-disc-disease)

titaniumed
11-05-2018, 07:49 PM
If tethering immediately began destroying discs and within a few years it caused serious problems that would be a deal killer.


Dingo, You know that nobody out there has abused their spine as bad as me.... I have posted skiing videos here to show, and after skiing big mountain style with jumps up to 70 feet, I must say that the spine can handle INCREDIBLE amounts of abuse. When you jump off a cornice at 70 feet, you land at around 100 MPH. Its a rush. I learned to turn off the chicken portion of my brain. I didn't crash much, but when I crashed, they were really bad crashes.....This is why I moved to Lake Tahoe. (smiley face) Deep powder skiing is a terrible addiction problem, and it had TOP priority over work! When the storms rolled in, I would get multiple phone calls from all my die hard skiing buddies. I came close to death a few times....On edge you might say....

I started this abuse in 1962 at age 4. My lumbar discs herniated in 2002. 4 of them. That's 40 years. Over 100 areas in North America, and heli skied in British Columbia.

Yes, I skied in pain sometimes.....but never ever on medication. That's what happened to Sonny Bono. 4PM, flat light, tree skiing after the 2nd day of snowfall, opoids, and a tree. Bad combination.

I wouldn't assume that Scott's discs are going to take a dump.

Ed

Dingo
11-05-2018, 08:25 PM
I started this abuse in 1962 at age 4. My lumbar discs herniated in 2002. 4 of them. That's 40 years. Over 100 areas in North America, and heli skied in British Columbia.

Haha, Wow! Actually that is comforting. That's 40 years of POW!

And realistically the herniation might have been the result of age. After 40 years it might have happened anyway even if you never skied at all.

titaniumed
11-05-2018, 09:21 PM
The herniation's happened after a series of pillows, or large rocks covered with snow, 3 drops of 25 foot each in 3 feet of powder. It wasn't a big set....I didn't think it was a problem.

I had no pain for 2 weeks, then the sciatica hit with major hip and ankle pain.(Delayed pain) This ended my jumping. (Jan 2002) I then started Celebrex and Bextra and battled that until my surgeries in 2008.

I grew up on the East coast ice, and did many many hard ice landings through the years. I am an old east coast skier. Boiler plate ice conditions dodging rocks and hardly any gooming back in the old days. Head Standards with Cubco bindings. I started with bear trap bindings and screw on edges when I was really small. I have owned around 50 pairs of skis.

Heck, I even made ESPN. That was cool. I wish I had that competition on video. I have looked and looked, and I cant find it. It was a Wayne Wong gig, he lives here in Reno. He is Elvis....I was invited while off the circuit. All these pros were wondering who I was. Ha ha None of them knew I was doing this with a really bad double rotational scoliosis at age 42. (Crazy stuff)

I couldn't say anything, they would turn me down. It was an invite only Wayne can do. He told me I should have been on the pro circuit all these years.

I was in really good shape years ago. Rock hard. Dr Menmuir even commented on it when he finally accepted me for surgery. (And I show up with a broke arm and shoulder!)

Funny, the look of concern when he saw my arm and pulled on it. Nobody shows up for scoliosis surgery this beat. "What happened?" " I had a bad crash doc". They had to protect my arm while re-positioning me on the table for my scoli surgeries.

Ed

titaniumed
11-05-2018, 09:42 PM
Video: M6 Artificial Disc Replacement (ADR) by Spinal Kinetics (https://www.youtube.com/watch?v=DP6OUfD4NP0)

This artificial disc is absolutely amazing. I can only imagine what artificial discs will be like in 20 or 30 years.

Hopefully by then they'll regenerate the discs with stem cells so that people can keep their original discs.

They're working on it right now.
DiscGenics Announces First Patient Treated in U.S. Clinical Trial of IDCT for Degenerative Disc Disease (https://www.discgenics.com/news-posts/2018/4/26/discgenics-announces-first-patient-treated-in-us-clinical-trial-of-idct-for-degenerative-disc-disease)

They don't use artificial discs in scoliosis patients, its just not done. There are old threads here on this subject matter from around 10 years ago.

There was one poster who had a artificial disc installed under a full fusion down under in Australia but she has not posted her outcome or posted in many years...

The device looks great......6 degrees is better than none. Lumbar discs articulate between 22-25 degrees per the Moe handbook.

Seeing that industrial video reminded me of these Swedish guys who crush stuff with a hydraulic press.....(Some entertainment)
If you think your vice is tough, its not. Ha ha
https://www.youtube.com/watch?v=Z255Ns8Sw0g&t=210s

The people that submit to that study need to know what happened with Synthes....(read down)
https://en.wikipedia.org/wiki/Synthes

God, I hate to burst balloons but the stem cell thing today is....well.....out of control. Too many out there with bogus materials doing expensive injections with a lot of hoopla.

Ed

Pooka1
11-06-2018, 11:10 AM
Hey Ed, maybe tethering is enough of a daparture from the status quo such that artifical discs can come into play for scoliosis. It just seems like the best thing to cone down the pike in a long time.

In other news, Dolan and company presented a poster on predicting outcome based on various measureables. Anyway she now is going with less than 45 degrees and no growth remaining as her success level. This is better than 49 degrees with up to 25 % growth remaining that defined success in the BrAIST but not by much.

titaniumed
11-07-2018, 01:04 AM
Sharon, The artificial discs look great but it seems that scoliosis surgeons are not sold on the idea or we would be seeing more activity....our discs are amazing devices to be able to put up with such punishment. If I had the latest artificial discs installed (before my fusion) and skied like I did, would they hold up? Probably not. The amounts of force on a bad crash are incredible....was I healing? I guess so. Just when you think you have something good, the Swede with the hydraulic press squashes that idea. Ok, next.....Scoliosis is like that, many ideas get crushed. Its been going on a really long time, the rack was 2500 years ago.

I think that the ability to heal has a lot to do with things....adolescence and growth are so much different than adults, some like me, punishing their spines with little progression, (.75-1 degree per year) other adult de-novo's have scoliosis progress out of nowhere without inducing elevated forces. Is this due to degeneration? Or lack of healing? Predicting outcomes always has some exception to the rule....

I noticed that the MRI inner ear studies in the white book go back to England a long time ago....Before Hong Kong (left inner ear, right thoracic)

It seems that much of the clues with scoliosis start at birth... You have to wonder why because this eliminates degeneration. Why are these kids being born like this? Are we all congenital's, idiopathic with a delayed response with our altered CNS controlling our destiny? Scoliosis is Central Nervous System disease. Until we figure out the brain, ideas are only pieces of the puzzle.

I feel sorry for scoliosis surgeons. Always trying to do their best with such complexity. If something goes wrong, how do they feel? People want answers, and sometimes there are no answers, or correct answers. They are having success with tethering which is good for the curves....but its not a cure for scoliosis.

Ed

Pooka1
11-07-2018, 05:28 AM
This issue of "cure" for scoliosis has come up before.

In my opinion, if a tether or a rod brings the spine to <10* then the person is cured. Yes the ROM is less but that doesn't mean the cure didn't happen. I was cured of appendicitis despite the fact that I have a scar and apparently internal adhesions that seem to put me in a slight spiral left seat. If I relax, my horse will take as an aid to turn left. Just from sitting there. He is very sensitive and trained to take invisible ounce-like cues. You can't see it and I can't prove it is due to adhesions but from what I have read, that is plausible. At first I had to consciously unwind to be straight. Now I do it unconsciously when my body senses my horse is not tracking straight.

If a tether or rod stabilizes the scoliosis at >10* then the scoliosis is not cured but in remission. My father had cancer for 25 years because he was never cured but in remission.

Obviously we would like less scars, adhesions and more ROM but that doesn't mean the scoliosis isn't cured or not in remission.

titaniumed
11-07-2018, 06:11 PM
Yes. I keep mentioning it. I like to think of the word cure as a "complete restoration" not just relieving symptoms or some symptoms when the underlying problem still exists.

A cure "ends" a medical condition.

Living with scoliosis hardware is not a cure. It can be a huge relief and improvement for many, but the reasons why we have scoliosis in the first place, are still there....

Headaches, dizziness, vertigo, lethargy, muscle gripping and pain, gait issues, subsequent disc problems, PJK, metallosis, ear and vision problems, zaps, stings, jolts, stiffness, numbness, soft tissue injury, rib humps, imbalance, psychological disorders, depression, anxiety, reduction of lung tissue and inspiration, hormonal changes, bowel and digestion problems, and Aunt Ester popping in can still continue....(scoliosis forum humor)

And revision surgery can still continue.....and there is no temporary cure and its a very see-saw, with up and down days living with scoliosis.

The kids do much better at this.....and technology has gotten much better. You would want to believe that you have done good as a parent, and you have, but its still there.

Biotech companies are focused on harnessing CRISPR gene editing to fight disease....Let all hope they can do something in a reasonable amount of time.(25 years)

I rode a horse English saddle indoors many year ago in Denver. They gave me specific instructions that were actually quite exacting, just slight inward pressure with the knees for turns. I had no problems with this horse, steer him on a dime, and I don't know much about horses. I remember telling the horse to canter with a soft voice. It was amazing how responsive a good horse can be. His name was Shadowfax. (Just kidding)

https://www.youtube.com/watch?v=-_WrJyp-WYI

Ed

Dingo
11-07-2018, 08:24 PM
As of today Scott is officially out of his brace.

On 8/22/18 he was 5'4" tall.
Tonight he was 5'4 & 5/16".

So he's grown 5/16" in 11 weeks.

That's a fairly normal rate of growth for a 15 year old.

Before he was tethered I wondered if the surgery would temporarily slow his growth due to the body's need to recover.

It appears that if growth was slowed it wasn't by too much.

burdle
11-08-2018, 06:55 AM
If the two pig spine studies are at all relevant, the side to side ROM of tethering, especially opposite the tether is about 1/4 that of the normal spine. If the dancer says she can do everything then she wasn't bending side to side much in her dancing which makes little sense to me. OR, like my daughter and like Ed, you can still have a fairly large ROM even with a fusion. So her dancing may be in range of what she can do with the tether.

Look at the pictures of tethered spines. It is very easy to see why bending side to side and especially to the opposite side would be much less than normal. There is a very tight tether there. It is not elastic. It is less ROM than even staples per that one study.

I am not a dancer so I don't know but what I do know is that she performed back flips and full backbending on camera - pretty conclusive visually.

If you talk to Betz et al - they always refer to the flexibility preservation side of things for VBT - kids who aren't eligible for VBT seem to be told that their gymnastics/dancing futures are over!

burdle
11-08-2018, 07:24 AM
http://www.spinalsurgerynews.com/2017/04/non-fusion-scoliosis-treatment/19218?fbclid=IwAR1ulmQiYhCnLBd1AlzH-mmxHTsAm5XJw0AUQZu-XnRAguJTMTEGIaHkiK0

This explains the approach

burdle
11-08-2018, 07:34 AM
Despite of that Law, there is no evidence or published outcome yet I could find of someone getting tethered, then getting it removed and ending up with the corrections made happily ever after. I'd like you to show me published evidence. The only ones I could find are negative, with a great percentage ending up re-tethered or fused in a matter of 2-4 yrs. I don't think you'd want to keep going under the knife and worrying when a tether breaks, especially when you do not know if you remove the tethers the spine will remain straight. In this case fusion IMO is still a much more sane and rational option since at least you do know what to expect and don't expose the child to double the risk of more surgeries as a result.



Can you post the negative evidence please. the intention of VBT is to leave the screws and tether in. the latest presentations I can find refer to very few ending up with a full fusion- any that have is because very soon after it was clear that VBT was not going to hold the curve.

From what I can tell parents of kids prefer to take the small chance of a future fusion surgery against a realistic chance of being tethered preserving mobility. There do certainly seem to be a load of adults who need revision surgery many years after fusion as well but these stats are not collated properly as often a surgeon will not or cannot do anything more to help.

titaniumed
11-08-2018, 07:40 AM
You are taller in the morning than you are at night.

With my 70/70 S curves as an adult, I probably fluctuated around 2 inches throughout the day.

If you leave a height mark in the closet, document the time of day the measurement was taken. In the morning is best.

A night time measurement can vary especially is one has just finished with a 1000# dead lift....(or after many high ski jumps)

Ed

Pooka1
11-08-2018, 10:28 AM
I am not a dancer so I don't know but what I do know is that she performed back flips and full backbending on camera - pretty conclusive visually.

This is front to back ROM. I was talking about side to side ROM.

If my fused daughter can bend to the side about half as far as I can then I suspect a tethered kid coul bend between half and three quarters of normal.

I can sit and twist about the same amount as Ed can and I am not fused and work out twice a week with a personal trainer. The soft tissue seems to compensate.

burdle
11-12-2018, 03:18 AM
This is front to back ROM. I was talking about side to side ROM.

If my fused daughter can bend to the side about half as far as I can then I suspect a tethered kid coul bend between half and three quarters of normal.

I can sit and twist about the same amount as Ed can and I am not fused and work out twice a week with a personal trainer. The soft tissue seems to compensate.

Not sure - the whole point of tethering is that the spine grows while tethered but grows straight- the tethering takes place much earlier than a fusion would -therefore once fully grown as near as full side bending is expected? there is no more growth after a fusion therefore the flexibility is not going to change afterwards.

http://www.spinalsurgerynews.com/2017/04/non-fusion-scoliosis-treatment/19218?fbclid=IwAR1ulmQiYhCnLBd1AlzH-mmxHTsAm5XJw0AUQZu-XnRAguJTMTEGIaHkiK0

Pooka1
11-12-2018, 06:33 AM
Not sure - the whole point of tethering is that the spine grows while tethered but grows straight- the tethering takes place much earlier than a fusion would -therefore once fully grown as near as full side bending is expected? there is no more growth after a fusion therefore the flexibility is not going to change afterwards.

http://www.spinalsurgerynews.com/2017/04/non-fusion-scoliosis-treatment/19218?fbclid=IwAR1ulmQiYhCnLBd1AlzH-mmxHTsAm5XJw0AUQZu-XnRAguJTMTEGIaHkiK0

But they leave the tether in. The more growth the TIGHTER the tether (if it holds). Maybe that's why they break... too tight from growth. I suspect they get stiffer with growth because of this.

The ultimate flexibility is determined by how much instrumentation is restricting it. Fusions restrict it the most. Staples and tethering less so. Tethers front to back maybe too little to notice and they probably have normal ROM.

If you look at the tethering system in cartoon or radiography, it is not surprising that the lateral ROM is less than even staples as in that one study. The tether is not elastic. There is no give and it has to be tight enough to straighten the spine which is why it works in the first place. And depending on the compressibility of the tether, bending towards the tether may be similarly restricted as bending away. The value of the tether seems to be because it preserves front to back ROM which is most important in lumbar. As I mentioned, my daughter did not even realize her thoracic ROM was restricted with fusion because she is not a contortionist. And even then she has about half the ROM side to side as I do. And I can't sit and turn my unfused torso more than Ed can.

From reading about this and seeing what people say, the issue is and has always been lumbar ROM. I don't recall reading about laments on thoracic ROM and that makes sense if these people don't even realize they have less ROM than normal in the thorax.

burdle
11-12-2018, 10:36 AM
But they leave the tether in. The more growth the TIGHTER the tether (if it holds). Maybe that's why they break... too tight from growth. I suspect they get stiffer with growth because of this.

The ultimate flexibility is determined by how much instrumentation is restricting it. Fusions restrict it the most. Staples and tethering less so. Tethers front to back maybe too little to notice and they probably have normal ROM.

If you look at the tethering system in cartoon or radiography, it is not surprising that the lateral ROM is less than even staples as in that one study. The tether is not elastic. There is no give and it has to be tight enough to straighten the spine which is why it works in the first place. And depending on the compressibility of the tether, bending towards the tether may be similarly restricted as bending away. The value of the tether seems to be because it preserves front to back ROM which is most important in lumbar. As I mentioned, my daughter did not even realize her thoracic ROM was restricted with fusion because she is not a contortionist. And even then she has about half the ROM side to side as I do. And I can't sit and turn my unfused torso more than Ed can.

From reading about this and seeing what people say, the issue is and has always been lumbar ROM. I don't recall reading about laments on thoracic ROM and that makes sense if these people don't even realize they have less ROM than normal in the thorax.

Don't see how this can be- the majority of VBT is done on the thoracic- it is unusual to have a double tether ( thoracic and lumbar) A lot of these kids have not developed a second lumbar curve yet alone it being structural so lumbar isn't really an issue. I will ask on the website.

Pooka1
11-12-2018, 11:13 AM
Don't see how this can be- the majority of VBT is done on the thoracic- it is unusual to have a double tether ( thoracic and lumbar) A lot of these kids have not developed a second lumbar curve yet alone it being structural so lumbar isn't really an issue. I will ask on the website.

I am sure you are correct that a majority of tethering is done on thorax. I am not disagreeing with that.

When I said the issue has always been... I am talking about patients noticing lost ROM. That is coming almost exclusively from the lumbar fusion patients, NOT thoracic fusion patients. The thoracic fusion patients do not seem to comment and I suspect it is because they don't notice the loss of ROM as in the case of my daughter.

I posted an article about how much a person can bend through the thorax if they try. It was more than I thought probably because I never needed to bend that way. At least I don't recall bending like that. I am not a contortionist as a hobby or career. So although I can with my unfused spine bend more than my daughter, I never need to. That's what is known as a distinction without a difference. My daughter was completely unaware she had lost ROM in her thorax until I asked her to bend to the side. And then she thought that was normal.

Tethering is hopefully going to be a big breakthrough for lumbar patients. If my daughters ever need lumbar instrumentation, I am hopeful tethering will be there for them. They will notice a difference in ROM in lumbar between fusion and tethering whereas they don't notice with their thorax.

Pooka1
11-12-2018, 11:21 AM
I bet every single kid tethered in the thorax feels completely normal despite any ROM loss. That's the point.

burdle
11-13-2018, 03:49 AM
I am sure you are correct that a majority of tethering is done on thorax. I am not disagreeing with that.

When I said the issue has always been... I am talking about patients noticing lost ROM. That is coming almost exclusively from the lumbar fusion patients, NOT thoracic fusion patients. The thoracic fusion patients do not seem to comment and I suspect it is because they don't notice the loss of ROM as in the case of my daughter.

I posted an article about how much a person can bend through the thorax if they try. It was more than I thought probably because I never needed to bend that way. At least I don't recall bending like that. I am not a contortionist as a hobby or career. So although I can with my unfused spine bend more than my daughter, I never need to. That's what is known as a distinction without a difference. My daughter was completely unaware she had lost ROM in her thorax until I asked her to bend to the side. And then she thought that was normal.

Tethering is hopefully going to be a big breakthrough for lumbar patients. If my daughters ever need lumbar instrumentation, I am hopeful tethering will be there for them. They will notice a difference in ROM in lumbar between fusion and tethering whereas they don't notice with their thorax.

As I said the majority of tethering done NOW is on thoracic curve- not the lumbar curve .The surgeons are distinguishing the procedure by the fact that it preserves flexibility- so tethered thoracic curved compared with fused thoracic curve. They are talking thoracic flexibility ( dancers need flat backs etc). Lumbar does not come into it at this point. One of the pre-requisites for VBT is a flexible thoracic curve bending out to < 30 degrees.


I am currently digging out the discussion paper that Dr Alanay produced on this subject and will share when I find it



I agree it will be a breakthrough for lumbar curves in the future.

Pooka1
11-13-2018, 06:39 AM
The surgeons are distinguishing the procedure by the fact that it preserves flexibility- so tethered thoracic curved compared with fused thoracic curve. They are talking thoracic flexibility ( dancers need flat backs etc).

There is no question the ROM is greater for a tethered versus fused thorax. There is also no question a tethered thorax has less ROM that an untethered one, especially side to side.

The question is do people other than contortionists and dancers actually miss any ROM with either procedure in the thorax. And do fused and tethered kids feel normal.

It is very good to have a treatment that preserves more ROM than another treatment. But when talking thorax, if most people don't use that ROM in their lives then it is really not relevant to if they feel normal and whether they feel like they lost ROM. If a fused kid feels normal and feels she has not lost ROM that she needs to do her career which includes fieldwork, then the thorax-tethered kids are definitely going to feel normal also.

I do HIIT, High Intensity Interval Training, twice a week for an hour each time with a personal trainer. We do all kinds of stuff at a high pace. I cannot think of a single exercise we do where I am not in neutral spine. I ride dressage which REQUIRES neutral spine. I am deliberately keeping my spine in one place for all of this. I suggest anyone who is fused, stapled or tethered in the thorax would be able to do my work outs and ride dressage with NO sense of lost ROM. With dressage in particular, a fused thorax is like a cheat because it forces correct posture that you would otherwise have to learn. I had to learn neutral spine and until I did it held back my progress.

My point is that with thorax, tethering is preserving flexibility that it seems many people do not use or need in their lives. If those kids needed a T fusion that went below L1 or their lumbar wouldn't straighten enough, or they are contortionists or dancers, then those are good reasons to get an experimental procedure like tethering in my opinion. Fusion is not a good option there.

burdle
11-19-2018, 09:27 AM
There is no question the ROM is greater for a tethered versus fused thorax. There is also no question a tethered thorax has less ROM that an untethered one, especially side to side.

The question is do people other than contortionists and dancers actually miss any ROM with either procedure in the thorax. And do fused and tethered kids feel normal.

It is very good to have a treatment that preserves more ROM than another treatment. But when talking thorax, if most people don't use that ROM in their lives then it is really not relevant to if they feel normal and whether they feel like they lost ROM. If a fused kid feels normal and feels she has not lost ROM that she needs to do her career which includes fieldwork, then the thorax-tethered kids are definitely going to feel normal also.

I do HIIT, High Intensity Interval Training, twice a week for an hour each time with a personal trainer. We do all kinds of stuff at a high pace. I cannot think of a single exercise we do where I am not in neutral spine. I ride dressage which REQUIRES neutral spine. I am deliberately keeping my spine in one place for all of this. I suggest anyone who is fused, stapled or tethered in the thorax would be able to do my work outs and ride dressage with NO sense of lost ROM. With dressage in particular, a fused thorax is like a cheat because it forces correct posture that you would otherwise have to learn. I had to learn neutral spine and until I did it held back my progress.

My point is that with thorax, tethering is preserving flexibility that it seems many people do not use or need in their lives. If those kids needed a T fusion that went below L1 or their lumbar wouldn't straighten enough, or they are contortionists or dancers, then those are good reasons to get an experimental procedure like tethering in my opinion. Fusion is not a good option there.

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.

Dingo
11-19-2018, 10:47 AM
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.

Pooka1
11-19-2018, 11:03 PM
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.

titaniumed
11-21-2018, 02:09 AM
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

Pooka1
11-21-2018, 09:12 AM
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.

Dingo
11-21-2018, 08:41 PM
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.

titaniumed
11-22-2018, 01:13 AM
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/opinions/healthy-food-trying-to-kill-us-crilly/index.html

https://www.cnn.com/2018/11/20/health/romaine-lettuce-e-coli-cdc/index.html

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

Ed

Pooka1
11-22-2018, 10:26 AM
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.

Dingo
11-23-2018, 09:26 AM
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.

Pooka1
11-23-2018, 10:45 AM
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.

Pooka1
11-23-2018, 01:09 PM
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. (https://www.ncbi.nlm.nih.gov/pubmed/30277999)

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?

Dingo
11-23-2018, 01:20 PM
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. (https://www.ncbi.nlm.nih.gov/pubmed/30277999)

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.

Dingo
11-23-2018, 01:23 PM
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.

Dingo
11-23-2018, 01:27 PM
Anterior Spinal Growth Tethering for Skeletally Immature Patients with Scoliosis: A Retrospective Look Two to Four Years Postoperatively. (https://www.ncbi.nlm.nih.gov/pubmed/30277999)

In the same study 7 patients had 1 broken tether and 1 patient had 3 broken tethers.

Pooka1
11-23-2018, 04:26 PM
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/scottishnationalspinedeformityservice/Spine%20Conditions%20and%20Operations/Pages/Anterior-Vertebral-Body-Tethering-(AVBT).aspx

https://www.spineuniverse.com/professional/case-studies/lonner/vertebral-body-tethering-progressive-adolescent-idiopathic

https://sharing.mayoclinic.org/2016/04/13/new-surgery-for-scoliosis-keeps-teen-agile-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=vertebral+body+tethering&source=lnms&tbm=isch&sa=X&ved=0ahUKEwjz94qpvOveAhVFnuAKHce9D1UQ_AUIDygC&biw=1182&bih=910#imgrc=YFjSXKOu0knC4M:

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

Pooka1
11-23-2018, 04:30 PM
Anterior Spinal Growth Tethering for Skeletally Immature Patients with Scoliosis: A Retrospective Look Two to Four Years Postoperatively. (https://www.ncbi.nlm.nih.gov/pubmed/30277999)

In the same study 7 patients had 1 broken tether and 1 patient had 3 broken tethers.

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.

Pooka1
11-23-2018, 04:35 PM
Also here is Newton making the point I made about whether tethering preserves significantly more ROM than fusion...

https://ryortho.com/breaking/study-tethering-reasonable-in-certain-thoracic-scoliosis-cases/


“Despite these challenges, a spinal fusion has been prevented in the majority of cases. However, the ‘true’ benefit of the retained motion relative to what would have likely been an isolated thoracic fusion can certainly be questioned. The differences in global trunk motion appears to be only modestly affected by a thoracic spinal instrumentation and fusion.”

“There is growing interest in fusion-less treatment for scoliosis. Internet sources and social media in my view often paint a picture praising tethering and damning fusion. This is biased and inaccurate. Patients need clear and balanced information on the pros and cons of tethering vs. fusion. My hope is this paper will offer some of the facts required to inform such discussions.”

“In my view, tethering is reasonable for the growing patient with a scoliosis beyond 45 degrees. They need to understand an attempt to avoid fusion with a growth modulating tether will be less reliable and have a higher revision rate than posterior spinal fusion. Some will value motion over the absolute correction or the greater chance of revision. Others will value the most reliable approach at the expense of a modest loss of motion. Shared decision making is mandatory.”

Dingo
11-23-2018, 06:37 PM
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.

From the same study linked above:


Table II: Broken Tether Data

Number of broken levels per patient
1 level: 7
3 levels: 1

He was very clear at our first meeting that he believed the tethers would not be long lived. In his study they started snapping at 18 months.

From the same study,


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.

It's only going to last a few years.

Pooka1
11-23-2018, 06:56 PM
Table II: Broken Tether Data

Number of broken levels per patient
1 level: 7
3 levels: 1

That means the one tether broken at three locations. That is because it is anchored at every level so the whole thing doesn't lose tension if it breaks. The residual tension broke it in two other places. That one kid obviously had a curve that was determined to progress.

Did Newton tell you there were 7 short tether segments? All the photos seem to show one long tether and the descriptions all indicate one long tether that is tensioned.

Dingo
11-23-2018, 07:00 PM
By the way as I watch this video Pooka is correct. It's one long tether separated into segments by metal implants.

Video: New Procedure to Treat Scoliosis at BC Children's (https://www.youtube.com/watch?v=6nPZdTriB2A)

Scott's 6 month checkup is in about 3 months. I'll ask Dr. Newton if every level will eventually snap. Based on our first conversation I believe the answer will be yes. The tether deteriorates and is not long lasting.

Pooka1
11-23-2018, 07:14 PM
In the commentary on Newtons article, they said the concept has been proven. I think the game is over and tethering will eventually replace most fusions.
Now it is just a game of minimizing/avoiding complications.

Dingo
11-23-2018, 08:25 PM
In the commentary on Newtons article, they said the concept has been proven. I think the game is over and tethering will eventually replace most fusions.
Now it is just a game of minimizing/avoiding complications.

For us tethering made sense because it allowed Scott's spine and chest to continue growing. So even if it failed and he was eventually fused it wouldn't be until after he was full grown.

I think eventually tethering will make sense for most kids with Scoliosis but it might not be mainstream for a decade or two.

From the study,

The ultimate potential benefit (or harm) of attempting to avoid spinal fusion with ASGT for patients with scoliosis may not be evident for decades.

Also if a child (like Scott) is fused before he is done growing his curve may continue to progress until he reaches maturity.

Vertebral growth after posterior spinal fusion for idiopathic scoliosis in skeletally immature adolescents. The effect of growth on spinal deformity. (https://www.ncbi.nlm.nih.gov/pubmed/7983109)

From one year after surgery to the latest review, the percentage anterior disc height decreased by nearly one-half and the percentage posterior disc height by nearly one-third in the fused segments (p < 0.001). There was a 4 degree increase in mean Cobb angle (p < 0.001), 11 patients (37%) having an increase of between 6 degrees and 10 degrees. There was a significant increase in mean apical rotation by 2 degrees (p = 0.003), and four patients (13%) had an increase of between 6 degrees and 16 degrees. There was little change in kyphosis.

Dingo
12-12-2018, 08:14 PM
Tiny update.

Scott lives about 1 mile from high school. Without prompting he decided that jogging home from school would be fun.

He's done it two days in a row and both times he said his back felt fine.

Before surgery he had a hard time standing for more than a few minutes let alone running.

So in his case VBT caused a huge reduction in back pain.

titaniumed
12-12-2018, 10:45 PM
Dingo

I see he is roughly 4 months now....time flies, does he feel any of the hardware at all. In any positions?

Is he completely recovered now? 100%?

Ed

Dingo
12-13-2018, 04:42 PM
Dingo

I see he is roughly 4 months now....time flies, does he feel any of the hardware at all. In any positions?

Is he completely recovered now? 100%?

Ed

He just got home from school so I asked him how he felt at the 4 month mark.

Laying down) 0% pain
Standing) 0% pain
Walking) 0% pain
Exercise) 0% pain
Jogging) 0% pain
Sitting) If he sits for a long time his back can start to get sore. He pointed to the area and it's roughly the area of the tethering.

In addition on the front of his chest there is a small area on a rib that is slightly numb. Around that area is some soreness that is noticeable if he touches it. It's been that way since the surgery.

So basically movement feels great. Sitting can become irritating if it's for a long time.

titaniumed
12-13-2018, 09:35 PM
Sounds pretty good.....

Numbness can happen after surgery. Some of it is predictable, some isn't . Peripheral nerves do heal, so its a wait and see thing. The spinal cord is a different story.

Sitting can be difficult for us. Sometimes, its EXTREMELY painful..... I had a lot of trouble sitting in the car before my surgeries. I also didn't sit down much at work, which means you have to work twice as fast before you pass out.

For many of us, we can only get a break by laying down.

Its nice to see this positive experience with Scott.

Ed

Dingo
12-13-2018, 09:50 PM
Sounds pretty good.....

Numbness can happen after surgery. Some of it is predictable, some isn't . Peripheral nerves do heal, so its a wait and see thing. The spinal cord is a different story.

Sitting can be difficult for us. Sometimes, its EXTREMELY painful..... I had a lot of trouble sitting in the car before my surgeries. I also didn't sit down much at work, which means you have to work twice as fast before you pass out.

For many of us, we can only get a break by laying down.

Its nice to see this positive experience with Scott.

Ed

Yeah I hope that sitting gets better as his back slowly corrects as he grows. (crossing fingers)

The tiny irritation on one rib is no big deal at all. He doesn't care about it and I believe it has slowly improved over the last 4 months.

We lifted weights tonight and he's getting physically stronger (and a little bigger) each week.
Another year and he'll be bigger than me. 8-)

titaniumed
12-14-2018, 11:09 PM
Over the years before my surgeries, I was a "fidgety" sitter, requiring movements for various reasons. I was an extremely active individual....The old aches probably had something to do with this, perhaps due to soft tissue and muscular imbalance problems. Many of us have this aching, stiffness and binding which can present itself in younger years living with scoliosis. The binding is what drove me to a Chiropractor when I was 28. (A long time ago) I don't know if smaller scoliosis curves (10-30 degrees) produce any binding. (In adults, over 18)

If one has the underlying contributing factors of scoliosis, and they get corrected with a tether, will this continue? It would seem that tethering patients would be good candidates for before and after EMG studies. I am not seeing too much about this online.

Do the imbalanced muscle systems correct themselves after scoliosis tethering? If so, how much?

Ed

Dingo
02-27-2019, 08:51 PM
Scott had his 6 month post-op checkup yesterday in San Diego. His curve measured 28° which was the same as his 2 week post-up. His 2 week and 6 month x-rays looked almost identical except (to my eyes) perhaps his lumbar was slightly improved at 6 months. His rotation measured 14°. I'm not certain what his rotation was at 2 weeks post-up but I believe it was 20° before tethering. It was a very happy visit and a tremendous relief that everything worked.

Stuff I learned:

1) The tethers aren't attached to produce an even force. At surgery the tethers near the apex of the curve are attached very tight to produce an immediate effect. However the tethers on either side are purposely left with slack. As Scott grows the slack on either end will tighten up and begin to force a correction along the entire spine. They do this to avoid over-correction and to reduce unnecessary stress and pressure on the disks in the spine. So put simply Scott has 8 segments but after surgery maybe only 2 or 3 near the middle were pulled tight. As he grows additional segments will pull tight until eventually all 8 segments are fully engaged and a correction is forced along the entire spine. Dr. Newton mentioned that for this and other reasons corrections occur at their own, seemingly random pace. He has had patients after their 2 week post-up see little correction for a long time and then suddenly the correction takes off. When the pressure reaches the right level it begins to work and every kid is different. They can't predict it yet.

2) The pressure caused by a segment never exceeds a certain level. Growth will continue until the tension on the tether increases to the point that growth is stalled. Once growth has stopped the tension won't increase. It hits a balancing point where everything stops.

3) Although the tethers aren't designed to last a lifetime it is unknown if some might. So far they've seen a lot of breaks in and near the lumbar area where load levels and motion are significant. However they've seen less breaks in the thoracic area where load levels and motion are reduced. Dr. Newton said it was theoretically possible that a tether segment in the thoracic area may never snap if it's not under a load. But as of now this is unknown.

Pooka1
02-28-2019, 06:23 AM
Wow excellent news. His curve will probably never get bigger and will almost certainly get smaller as he grows.

Very interesting abut the mechanics of setting the tether tension.

Dingo
02-28-2019, 09:05 AM
Wow excellent news. His curve will probably never get bigger and will almost certainly get smaller as he grows.

Very interesting abut the mechanics of setting the tether tension.

Yeah we were very pleased but I'm not going to get cocky. Tethering doesn't always work but so far it's a really good sign.

Scott went from 63° to 28°. If he had been fused I'm not certain the correction would have been that much better. I think there are a lot of people that have curves in the 20° range even after fusion.

Pooka1
02-28-2019, 11:04 AM
I don't think they would fuse a Risser zero child but I don't know that. That would guarantee crankshaft if they did.

There is hyper-correction for some and not other curve types but I have seen it criticized as grandstanding. I am not sure why it would be criticized given Boachie's comment about being one and done for T curves only if the lumbar straightens enough. And you only get massive straigthening when you hyper-correct because the curves match over time.

I have one kid who is hyper-corrected and one who isn't. I am far more worried about the one who isn't in terms of needing future surgery. I hope tethering will work for her if and when she might need it.

Dingo
02-28-2019, 05:31 PM
I don't think they would fuse a Risser zero child but I don't know that. That would guarantee crankshaft if they did.

There is hyper-correction for some and not other curve types but I have seen it criticized as grandstanding. I am not sure why it would be criticized given Boachie's comment about being one and done for T curves only if the lumbar straightens enough. And you only get massive straigthening when you hyper-correct because the curves match over time.

I have one kid who is hyper-corrected and one who isn't. I am far more worried about the one who isn't in terms of needing future surgery. I hope tethering will work for her if and when she might need it.

In Scott's case with 10° progression in one month Dr. Newton said it was time for fusion or tethering. Maybe there was a 3rd surgical option, I'm not sure. But it was time for immediate surgical intervention.

titaniumed
02-28-2019, 09:20 PM
Congratulations!

How tall is Scott now and how tall are you and your wife?

How much growth is expected, and when did Dr Newton say Scott would stop growing?

Ed

Dingo
03-02-2019, 08:58 AM
Congratulations!

How tall is Scott now and how tall are you and your wife?

How much growth is expected, and when did Dr Newton say Scott would stop growing?

Ed

Scott is a little over 5 '5".
His older brother is 17 and 5' 9".

I'm just 5' 7.5" and his mom is 5'4".

By the look of his frame we suspect he will be as big as his brother or maybe just a little more. 5'9" or 5'10".

Dr. Newton said that Scott is a late bloomer. Most boys' spines stop growing at age 17 but his will most likely stop at age 18.

Based on everything we've been told it seems that the more he grows the greater his potential correction. But we're happy with 28°. If he remains stable at that point it will buy him all the time he needs until some incredible advancement 20, 30 or 40 years from now. We'll take it!

titaniumed
03-02-2019, 01:12 PM
Dingo, How much has Scott grown in the last 6 months? (I am assuming you have the height marks in the closet? Measure in the morning, same time)

Its going to be very interesting to see how Scott's spine shape changes over the next 2-3 years.



3) Although the tethers aren't designed to last a lifetime it is unknown if some might. So far they've seen a lot of breaks in and near the lumbar area where load levels and motion are significant. However they've seen less breaks in the thoracic area where load levels and motion are reduced. Dr. Newton said it was theoretically possible that a tether segment in the thoracic area may never snap if it's not under a load. But as of now this is unknown.

This is interesting that the tethers are mostly breaking in the lumbar, or down low. Its similar for full fusion patients with rod breaks, I don't believe we have ever seen a thoracic pseudarthrosis ever reported here or at least its not common. Also, the lumbar area gets 1st place position for herniation. 2nd place is C5-6 C6-7, so you cant assume that its weight causing this. A lot of us scoli adults in our senior years suffer with neck problems.

Mobility seems to play a strong part in degeneration of the lumbar spine. (adult scoliosis spine) Maybe mobility is the wrong word, perhaps its the extreme positional limit of the joint or joints that causes all the damage. (tether breaks, pseudarthrosis and rod breaks, and herniated discs)

Ed

Pooka1
03-02-2019, 01:27 PM
The lack of evidence for tether breakage in the thorax is totally in keeping with people not moving much through that area. This is why my daughter was not aware of a loss of ROM after she was fused T4-L1. She has normal movement in her lumbar as far as I can tell. It is only the side-to-side bending through the thorax that has decreased by about half.

I don't remember asking her to bend forward just from above the waist and round her shoulders to test ROM in that plane because that is just bad posture and nobody should be doing that ever. It is a good thing if she is limited on how bad her posture can get in that sense. This is why I think people fused through the thorax have an advantage in sports requiring exacting, correct posture like dressage. I would be much further along in this sport if I was internally prevented from having bad posture.

Dingo
03-04-2019, 11:07 AM
Dingo, How much has Scott grown in the last 6 months? (I am assuming you have the height marks in the closet? Measure in the morning, same time)

Its going to be very interesting to see how Scott's spine shape changes over the next 2-3 years.



This is interesting that the tethers are mostly breaking in the lumbar, or down low. Its similar for full fusion patients with rod breaks, I don't believe we have ever seen a thoracic pseudarthrosis ever reported here or at least its not common. Also, the lumbar area gets 1st place position for herniation. 2nd place is C5-6 C6-7, so you cant assume that its weight causing this. A lot of us scoli adults in our senior years suffer with neck problems.

Mobility seems to play a strong part in degeneration of the lumbar spine. (adult scoliosis spine) Maybe mobility is the wrong word, perhaps its the extreme positional limit of the joint or joints that causes all the damage. (tether breaks, pseudarthrosis and rod breaks, and herniated discs)

Ed

Ya know at first we started measuring him against the wall and then we got busy and stopped doing it. I'm almost ashamed to say I'm not sure how much he grew over the last 6 months, haha.

titaniumed
03-05-2019, 02:31 AM
Ya know at first we started measuring him against the wall and then we got busy and stopped doing it. I'm almost ashamed to say I'm not sure how much he grew over the last 6 months, haha.

Oh man! Your killing me! (smiley face)

Things are going to be great with Scott....really looking forward to this.

This waiting for long term results in scoliosis or even in the whole medical realm is difficult when you wait yourself....I have been waiting a long time, you see, and running out of time.

Its like launching a probe to Pluto, and waiting years to see what happens.

Ed