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Thread: Scott's Vertebral Body Tethering Thread

  1. #136
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    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
    Last edited by titaniumed; 11-07-2018 at 06:29 PM.
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  2. #137
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    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.

  3. #138
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    Quote Originally Posted by Pooka1 View Post
    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!

  4. #139
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  5. #140
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    Quote Originally Posted by Jinseeker View Post
    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.

  6. #141
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    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
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  7. #142
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    Quote Originally Posted by burdle View Post
    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.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  8. #143
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    Quote Originally Posted by Pooka1 View Post
    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/201...uJTMTEGIaHkiK0
    Last edited by burdle; 11-12-2018 at 04:28 AM.

  9. #144
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    Quote Originally Posted by burdle View Post
    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/201...uJTMTEGIaHkiK0
    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.
    Last edited by Pooka1; 11-12-2018 at 08:56 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  10. #145
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    Quote Originally Posted by Pooka1 View Post
    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.

  11. #146
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    Quote Originally Posted by burdle View Post
    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.
    Last edited by Pooka1; 11-12-2018 at 11:22 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #147
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    I bet every single kid tethered in the thorax feels completely normal despite any ROM loss. That's the point.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  13. #148
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    Quote Originally Posted by Pooka1 View Post
    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.

  14. #149
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    Quote Originally Posted by burdle View Post
    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.
    Last edited by Pooka1; 11-13-2018 at 07:41 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  15. #150
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    Quote Originally Posted by Pooka1 View Post
    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.

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