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Thread: DD recently diagnosed -- any suggestions?

  1. #91
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    Quote Originally Posted by Pooka1 View Post
    I am hoping they solve tethering for adults in the future. One of my two daughters was left with a mid 20s lumbar curve. I wonder if even multiple tethers, serially replaced as they break, is better than fusion. Were it me, I think I would try that.
    This is secondhand, but I have heard that the docs who have been doing tethering the longest will only do three procedures in a lifetime because it's too traumatic to come in from the side and deflate the lung and move the psoas muscle. To the point where they're telling people who's tethers have broken twice to wait for stronger tethers to come on the market because they only have one revision left.

    Btw, the doc explained something that we have talked about before. He said that with bracing, they make the kids stand up super straight and that makes the spine a little less curved than it really is, even 24-48 hours out of brace. It really takes weeks or months of slouching (as we all do) for the spine to settle into it s natural curvature. So in his experience it's not uncommon to see braced kids "improve" by a few degrees while bracing, but then have that improvement go away and even get a few degrees worse in the follow up after cessation. He said that he specifically budgets in a ten percent "settling" progression when recommending surgery or not in kids who are bracing at maturity. (Hence his warning that at her next scan my daughter will likely be around 42-43T and 39-40L.)

  2. #92
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    Quote Originally Posted by Concerneddad View Post
    This is secondhand, but I have heard that the docs who have been doing tethering the longest will only do three procedures in a lifetime because it's too traumatic to come in from the side and deflate the lung and move the psoas muscle. To the point where they're telling people who's tethers have broken twice to wait for stronger tethers to come on the market because they only have one revision left.
    Good intel. Do they have to deflate the lung for a lumbar tether?

    Btw, the doc explained something that we have talked about before. He said that with bracing, they make the kids stand up super straight and that makes the spine a little less curved than it really is, even 24-48 hours out of brace. It really takes weeks or months of slouching (as we all do) for the spine to settle into it s natural curvature. So in his experience it's not uncommon to see braced kids "improve" by a few degrees while bracing, but then have that improvement go away and even get a few degrees worse in the follow up after cessation. He said that he specifically budgets in a ten percent "settling" progression when recommending surgery or not in kids who are bracing at maturity. (Hence his warning that at her next scan my daughter will likely be around 42-43T and 39-40L.)
    This is in keeping with the known fact that braces do not improve curves. They can only hope to hold it.
    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. #93
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    Quote Originally Posted by Concerneddad View Post
    Nope, he didn't say what the "fix" would be. Just that many women with this type and size of curves start noticing them in their early/mid 30s, but at that point they have or are having small children and jobs and it's just not convenient to have major surgery, so they wait until their 40s and get it fixed then when the kids are older and the jobs are more manageable.

    But he stressed that right now -- and for the foreseeable future -- her curves don't have any cosmetic issues, they don't have any pain, and if they do get worse it's going to be very slowly, so there simply isn't any reason to have surgery at present.
    Sounds right, or familiar should I say.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  4. #94
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    Quote Originally Posted by Pooka1 View Post
    Good intel. Do they have to deflate the lung for a lumbar tether?
    So I don't actually know the answer to this. I'd guess it probably depends on the lumbar level -- L1 is high enough that I'd suspect they do, whereas L4-L5 not. But I don't know. I do know that there are people who are ten years or so post-tethering surgery who have had multiple breakages and what they are saying is that the docs who have been doing it since the beginning are telling them to wait.

    As an aside, at some point in the next decade or so there is going to be a study looking at tethering and all of the attendant consequences -- whether tethered patients lose ROM or mobility, how long before breakage, whether it affects growth, etc., and I'm super curious what they find. It's really interesting.

  5. #95
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    Quote Originally Posted by Concerneddad View Post
    As an aside, at some point in the next decade or so there is going to be a study looking at tethering and all of the attendant consequences -- whether tethered patients lose ROM or mobility, how long before breakage, whether it affects growth, etc., and I'm super curious what they find. It's really interesting.
    Because they don't generally remove tethers, it seems like it is an open question whether adolescents retain the correction they gained during growth. But because the tethers all break, maybe that question isn't so open?
    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. #96
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    Quote Originally Posted by Pooka1 View Post
    Because they don't generally remove tethers, it seems like it is an open question whether adolescents retain the correction they gained during growth. But because the tethers all break, maybe that question isn't so open?
    I talked to our doc about this in one of our first visits. He said that from what he's seen the kids that get growth modulation from tethers have retained that correction ten years later. It's why he started offering it -- there's enough data now to know it works in the medium term (he was completely up front that no one knows what will happen 20+ years down the road). He was very skeptical that it would provide anything other than temporary correction in a mature spine, but I know that he's referred people to some of the docs operating on fully mature adolescents, so he's not *that* hostile to it. He did say that all tethers would break, so he's not pretending that they don't. I think he's probably a realist and if people are facing a long fusion down to L4 for their kids and they want to gamble, it's understandable.

  7. #97
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    Quote Originally Posted by Concerneddad View Post
    I talked to our doc about this in one of our first visits. He said that from what he's seen the kids that get growth modulation from tethers have retained that correction ten years later. It's why he started offering it -- there's enough data now to know it works in the medium term (he was completely up front that no one knows what will happen 20+ years down the road). He was very skeptical that it would provide anything other than temporary correction in a mature spine, but I know that he's referred people to some of the docs operating on fully mature adolescents, so he's not *that* hostile to it. He did say that all tethers would break, so he's not pretending that they don't. I think he's probably a realist and if people are facing a long fusion down to L4 for their kids and they want to gamble, it's understandable.
    This really makes this a thinker....you gain correction, remodulate, and essentially reset the progression clock when the tethers break. (on each specific level)

    With Sharon's question, on ALIF, in the lumbar, it's the retroperitonial sac, not the lung. For ALIF they use plates or blades to hold the sac over as they don't want to enter if possible. My vascular surgeon explained this to me as a positive thing....or 1 bonus point. (Positive laid over the stress of a highly invasive procedure) They did not deflate my lungs for my ALIF which was up to L1. I believe the lungs end right there at that level. Its close. The heart is right there also.

    I don't know about XLIF techniques. (assuming that these are the techniques for driving in lumbar tethering screws)

    My books are getting old now, and do not have much Minimally Invasive data. The entry points require a very technically oriented surgeon.....I am pretty sure Linda had an XLIF done, she might know how this works. Dr Anand in Los Angeles is a MIM scoliosis surgeon pioneer or proponent. Perhaps some searches using him might answer more questions on MIM scoliosis procedures.

    Thanks CD and Sharon for posting I elect both of you parents of the year award.

    CD, I wonder if increasing the diameter of the braided tether would help. Was this discussed? Or double tethering?

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

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