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Thread: Scott's Vertebral Body Tethering Thread

  1. #46
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    Quote Originally Posted by Dingo View Post
    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
    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. #47
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    Quote Originally Posted by Dingo View Post
    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.

  3. #48
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    Quote Originally Posted by burdle View Post
    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.
    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."

  4. #49
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    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?
    Last edited by burdle; 09-11-2018 at 11:01 AM.

  5. #50
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    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.
    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."

  6. #51
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    Quote Originally Posted by Pooka1 View Post
    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.

  7. #52
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    Quote Originally Posted by burdle View Post
    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.
    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. #53
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    Quote Originally Posted by Pooka1 View Post
    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.

  9. #54
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    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.
    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. #55
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    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
    Attached Images Attached Images
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

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

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

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

  11. #56
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    Quote Originally Posted by titaniumed View Post
    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.

    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

    As demonstrated on the radiographs, the vertebral wedging that existed preoperatively corrected with time, apparently through growth modulation of the end plate physes.
    Last edited by Dingo; 09-15-2018 at 03:10 PM.

  12. #57
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    Quote Originally Posted by titaniumed View Post
    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/...-human-experts

    https://www.telegraph.co.uk/news/new...-from-bad.html
    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. #58
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    Quote Originally Posted by Pooka1 View Post
    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
    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

  14. #59
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    Quote Originally Posted by Dingo View Post
    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/...terials-en.pdf


    Science direct... History of spine deformity (At bottom, keep clicking for next article)
    https://www.sciencedirect.com/scienc...12134X15001756

    Dr Moe. He made it happen in Minneapolis. SRS
    https://www.sciencedirect.com/scienc...12134X15001744

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

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

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

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

  15. #60
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    Quote Originally Posted by Pooka1 View Post
    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...

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