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Thread: My niece

  1. #16
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    Quote Originally Posted by burdle View Post
    Hi,

    My feeling is that with more screening and VBT being done before fully grown maybe a lot fewer people will have a lumbar curve whether structural or compensatory- given that the most common curve is thoracic and the lumbar ones often come afterwards.
    I think most if not all T scolioses come with a compensatory lumbar curve as the spine strives to maintain balance. That is not a structural curve and will disappear some/mostly/completely as the T curve is straightened. There is no lumping functional and structural curves. They are completely different. If a person has a structural T curve and a functional L curve then they ONLY have T scoliosis. There is nothing wrong with their lumbar. If a person has a structural T curve and a structural L curve then they have a double curve. Only structural curves need to be fixed as the functional curves straighten themselves spontaneously to balance the straightened structural curve. This happened in both my daughters by the time of the first post-surgical erect radiograph on day 3 or 4 which is pretty good evidence that functional curves are only balancing a structural curve and are not real curves.

    Structuralizing a previously functional lumbar curve associated with a structural T curve can happen in several instances including...

    1. the T curve was never straightened surgically (i.e., went untreated)
    2. the T fusion extended past about L1
    3. the T fusion did not straighten the T curve enough to drive enough straightening in the initially functional lumbar curve

    I am not saying there is no success with lumbar or combination just that from what I read there seems to be more success with just thoracic.
    What do you mean by success? Success would include addressing both the T curve and protecting the lumbar. Certain cases of fusion can do that. I don't think they know yet if tethering can do both. They may be winning the battle of the thorax but losing the war of the lumbar.

    So no need to drive a lumbar straight if lumbar not involved.
    Yes there is. I posted a case study from Dr. Hey where a woman who only had a structural T curve went on to convert her previously only functional L curve to a structural L curve through no fault of her own... her T curve was below the surgical threshold. She was screwed and destined to have her L curve structuralized because her T curve never reached the surgical threshold. Had they lowered the threshold and straightened her T curve, maybe she never would have had her L curve structuralized. Who knows. The point is all T curves potentially endanger the lumbar if not corrected.

    That is why I consider T curves to be emergencies. The lumbar is in potential danger.
    Last edited by Pooka1; 05-24-2019 at 06:09 PM.
    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."

  2. #17
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    This is why I called tethering a deal breaker if it didn't also address the residual functional/compensatory curve in the lumbar as per your original comment. If compensatory lumbar curves can become structuralized under even sub-surgical untreated T curves then will they also become structuralized under tethered T curves that don't drive enough straightening in the lumbar??

    Important question.
    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."

  3. #18
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    https://srs.gmetonline.com/Presentat...id=12&reload=1

    I looked at the last two talks at random.

    The correction of the functional lumbar curve under the tether is all over the place... ~30% in one study and over 60% in the other. I suspect the other talks would add to that range.

    I really don't know but I bet that is probably similar to how much fusion can drive correction in the lumbar.

    Other than for the particular case of T curves where the fusion ends at about L1 and the lumbar can be driven straight which is thought to be protective of the lumbar, I suspect tethering will pan out for all other curves and maybe even for that class of curves eventually. Essentially, in the cases where fusion cannot protect the lumbar then there is nothing to lose in trying tethering.
    Last edited by Pooka1; 05-26-2019 at 08:33 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."

  4. #19
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    If you listen to those tethering talk, several of the studies explicitly track how much decrease is happening in the compensatory lumbar curve. There must be some reason they are tracking that. It is not irrelevant. I am suggesting that the reason they are tracking it is because they are concerned about whether tethering can drive enough straightness through the lumbar to hopefully spare it from becoming structuralized.

    In one talk, not only did fusion straighten the T curve more than tethering but it drove much more straightness through the lumbar compared to tethering. The point I think is to not just treat the T curve but to protect the lumbar. It is a Pyrrhic victory to win the T scoliosis battle but lose the L war.
    Last edited by Pooka1; 05-26-2019 at 10:45 PM.
    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."

  5. #20
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    I watched all the IMAST and SRS talks from the meetings last year on tethering plus a few others on other subjects.

    Here are some things I recall from those talks...

    Newton says he turns away 4 out of 5 kids who ask for tethering. That is some pretty strict patient selection!

    Someone else said tethering has been shown to alter the natural history. So that agrees with the other guy who said the concept has been proven.

    There is a sky high rate of complications and a certain number fail tethering and go on to fusion.

    Tethers often break but it usually doesn't matter.

    If you want a good looking back, tethering may not be the answer... it cannot address the rib hump like fusion can.

    They are openly questioning whether the small difference in ROM between a fusion and a tether is worth the known and unknown downsides of tethering at the moment. The tone was of very cautious optimism if not some skepticism on some of these talks about tethering.

    In re small difference between ROM of a fused versus tethered T curve... Newton I think showed a picture of a tethered ballerina doing some type of step involving a leap and a backbend. Then he showed another girl completely bent backwards such that her ankles were next to her ears. Her back was bent backwards more than the tethered ballerina. She was fused through the thorax. This makes the point in no uncertain terms that the difference in ROM is small and that fusion is still the gold standard.

    On a non-tethering topic... Lonner studied the incidence of disc damage 10 years out from various fusions. Guess what the incidence was for fusions that end at L1? 3.7%. That is probably no different than the general population. I herniated a disc when I as 31 and I don't have scoliosis.

    This is consistent with Boachie's comment made many years ago... emphasis added about the conditions under which involvement of the lumbar can be avoided with a T fusion...

    If you fuse a 13-year-old to L4, 20 to 25 years later, at the most, he or she is going to have problems at L4-5 and L5-S1 levels. So I tell them to take it easy a little bit, and avoid excessive high impact, rotational sports and activities, no other things that will cause early degeneration. But if you fuse them to L1 or T12, they can do very well for the rest of their lives, provided the remaining lumbar spine is properly aligned and has not shifted.
    It's that last part about aligning the lumbar that tethering cannot not do as well as fusion per a few of those talks.
    Last edited by Pooka1; 05-27-2019 at 10:05 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."

  6. #21
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    Quote Originally Posted by Pooka1 View Post
    There is a sky high rate of complications and a certain number fail tethering and go on to fusion.
    Oh boy.... Any complication stats you remember Sharon, or amount of patients that had to be fused after tethering failure?

    Its been a few years now on tethering.....but it seems that not all scoliosis surgeons are jumping on the bandwagon.

    I tried liquid CBD for the first time. I will report after some more testing. I found it tiring, similar to taking Celebrex for the first time. It sure does help with sleeping!

    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. #22
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    Quote Originally Posted by titaniumed View Post
    Oh boy.... Any complication stats you remember Sharon, or amount of patients that had to be fused after tethering failure?

    Its been a few years now on tethering.....but it seems that not all scoliosis surgeons are jumping on the bandwagon.
    In re complication rate, I think Newton was saying about 40% IIRC and I may not. Another guy had a much lower complication rate though.

    In re needing to fuse after failed tethering, think one guy said it would be about 5-10% although he said he had only done three so far in the one study which I took to mean that was lower than the predicted rate so far. I have seen so many talks and it is hard to remember who said what or try to remember accurately. What I wrote I am pretty sure about although I encourage people to watch these talks (they are only a few minutes long each) and see for themselves.

    Newton was hammering the complication rate but also seemed to indicate he thinks it will pan out.

    The key seems to be having about 2-3 years of growth left. More and you get over-correction. Less and you do not change the curve enough through H-V principle and the tether will break you don't have enough correction. That comment made me wonder how the heck this can ever work on adults? The tether will break and the correction will be lost. If even kids with some amount of growth remaining can't remodel the vertebra enough to make it a solution then adults surely can't.

    One guy said he had a 16 yo (I think) girl with no growth left come in with a large set of curves and say she wanted to be tethered and not fused. I think he turned her away because he showed a picture of a fusion (not sure if it was that girl) and said fusion was her best option. Or if that was the girl he must have convinced her to have the fusion.

    Once I heard the comment about Newton turning away 4 out of 5 patients and then some of those tethered patients will fail and need fusion, if tethering pans out, it may only be an option for a small number of patients. In that case it can't replace fusion for most patients.

    These guys are clearly worried about structuralizing the lumbar because they are measuring compensatory lumbar curves under tethers. So that is a live issue as I have been banging on about. One guy said that it is completely unknown if tethering affects lumbars. So they don't know if the small amount of increased motion with a tether can overcome the lack of straightness in the lumbar for tethering versus fusion.
    Last edited by Pooka1; 05-27-2019 at 03:55 PM.
    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. #23
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    It looks like its mostly about the timing.... How interesting that you have to get that correction to relieve the pressure on the tether so it wont break.

    So, age 13-14 looks like the optimal age? Males perhaps a year or two later....

    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

  9. #24
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    They don't talk in terms of chrono age. They talk in terms of amount of growth left as far as I can tell.

    It seems like many kids will simply miss the window. I get the distinct impression that there are some very amazing successes already but those people must be some very small minority of patients and even of patients who ask for tethering.
    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. #25
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    Her curve is not as severe hers is like I think itís like 20 to 25 degrees
    Kara
    Age 27
    Boston Brace Apr 15 2005 to May 25 2006
    Posterior Spinal Fusion March 10 2010
    T4-L2
    Before T50 and L35
    After T20 and L17
    Possible Neruomuscular scoliosis
    Possible Charcot-Marie-tooth Disease type 1A

  11. #26
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    Quote Originally Posted by Pooka1 View Post
    They don't talk in terms of chrono age. They talk in terms of amount of growth left as far as I can tell.

    It seems like many kids will simply miss the window. I get the distinct impression that there are some very amazing successes already but those people must be some very small minority of patients and even of patients who ask for tethering.
    I don't think that one should become overly depressed or upset because they missed the tethering window. Like Pam had in her signature, fusion is not the end of the world. Our "acceptance" of our scoliosis and its path is probably the most important thing in all of this. Rejecting fusion can lead to thoughts of pain, and just thinking about pain makes it worse.

    If one can catch a kid early, seeing a scoliosis surgeon is a must for an evaluation. Seeing a tethering surgeon is the cherry on the whipped cream if the person is that perfect tethering candidate. For tethering timing, we should call this "Dingo timing" since he and Scott had all the chips fall the right way. It looks like Scott's timing was perfect. He is coming up on a year and looking forward to seeing his new x-rays. Any post tethering x-rays from anyone will be of great interest. There was a girl with an S curve done by Dr Lonner that posted here around a year ago, I especially would want to see her x-rays since I have a S curve.

    For Kara's niece, Dr Diab in San Francisco (UCSF) is the closest tethering surgeon in Northern California. With insurance, staying in your home state is advantageous, California being just about the whole west coast of the US is a good state for this reason.

    Tethering (VBT) and Stapling (VBS) pediatric surgeon list.
    https://pediatricspinefoundation.org/physicians/

    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

  12. #27
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    Quote Originally Posted by titaniumed View Post
    I don't think that one should become overly depressed or upset because they missed the tethering window. Like Pam had in her signature, fusion is not the end of the world. Our "acceptance" of our scoliosis and its path is probably the most important thing in all of this. Rejecting fusion can lead to thoughts of pain, and just thinking about pain makes it worse.
    Hey Ed, I totally agree. These tethering kids are in uncharted territory. Those surgeons giving talks continued to say fusion was still the gold standard. Newton is turning away 4 out of 5 patients for ask for tethering. i just hope that the tethering window isn't so strict for lumbar patients who will notice a difference. I don't believe these T patients will notice a difference between tethering and fusion especially after that side-by-side shot of the fused girl back-bending way more than the tethered girl. That is not to say the tethered girl couldn't also do what the fused girl did. It is to say she probably can't do MORE than the fused girl. So no depression required for T fusions versus tethering.

    If one can catch a kid early, seeing a scoliosis surgeon is a must for an evaluation. Seeing a tethering surgeon is the cherry on the whipped cream if the person is that perfect tethering candidate. For tethering timing, we should call this "Dingo timing" since he and Scott had all the chips fall the right way. It looks like Scott's timing was perfect. He is coming up on a year and looking forward to seeing his new x-rays. Any post tethering x-rays from anyone will be of great interest. There was a girl with an S curve done by Dr Lonner that posted here around a year ago, I especially would want to see her x-rays since I have a S curve.
    The fact that Scott was the 1 out of 5 kids who Newton accepted for tethering is a very good sign he is a good candidate who will be successful in my opinion.
    Last edited by Pooka1; 06-02-2019 at 05:40 PM.
    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. #28
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    I donít think my niece is a Candidate for Vertebral body tethering Or vertebral body Stapling. Because she has other things with her spinal cord.
    Kara
    Age 27
    Boston Brace Apr 15 2005 to May 25 2006
    Posterior Spinal Fusion March 10 2010
    T4-L2
    Before T50 and L35
    After T20 and L17
    Possible Neruomuscular scoliosis
    Possible Charcot-Marie-tooth Disease type 1A

  14. #29
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    Quote Originally Posted by Karagirly View Post
    I donít think my niece is a Candidate for Vertebral body tethering Or vertebral body Stapling. Because she has other things with her spinal cord.
    This is a new wrench in the gears....and will most likely slow down any surgical decision making.

    Kara, How old is your niece? Does she live in or live close to Sacramento?

    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

  15. #30
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    My niece is 11 years of age. She lives in Ukiah. She goes to Shriners and uc Davis
    Kara
    Age 27
    Boston Brace Apr 15 2005 to May 25 2006
    Posterior Spinal Fusion March 10 2010
    T4-L2
    Before T50 and L35
    After T20 and L17
    Possible Neruomuscular scoliosis
    Possible Charcot-Marie-tooth Disease type 1A

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