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Thread: Two more collapsed spine cases, one starting at only 33* at maturity

  1. #1
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    Two more collapsed spine cases, one starting at only 33* at maturity

    http://drlloydhey.blogspot.com/2011/...ddle-aged.html

    First case:
    Age 23, Cobb angle = 33*
    Age 31, Cobb angle = 53*

    That is not that paradigm you often hear.

    Second case.
    Age 55 - here lumbar collapsed under a previously thoracic only curve requiring extra lumbar levels to be fused.

    That is precisely what I avoided for my girls.
    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."

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    My scoli has gotten worse and turned into a double major curve from a single major curve. Makes me wonder if my DDD is due to this since my curves go from T1 to L2. As a youth I had NO lumbar involvement at all. Ahhh, the effects of the aging scoliotic spine, the frustration of not finding anyone to help stop it before it gets worse... I know the surgery is dangerous, however if they started doing it when only a few vertebrae could be fused rather that the whole spine. BUT it is also so unpredictable. Some people never progress, and how do you separate us? Scoliscore perhaps? I think it would still be helpful to give to adults up to middle age. Who could have known that my stable spine up to age 35 or so would start progressing again? No explanation for it except maybe damage done by a chiropractor, but chiropractors never had any effect on my curve as a younger person. I'm just pondering... I don't have a whole lot to draw from except my own personal experiences and what I read about it. But as I see it, this is one of the most frustrating diseases to have because there is no "standard" protocol and you are at the mercy of a limited amount of docs (especially limited by insurance companies) and the one suffering as little to no say in their own treatment.

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    hey rohr
    so many unknowns! i was not diagnosed til age 30/31...but i KNOW i had scoli before that...i quit going to doctors
    around age 12....terrible fears...no way they would have caught it before...
    i remember a doctor mentioning something to me at age 20...i didn't pay much attention...

    even with the diagnosis, i was OK til i herniated discs, MUCH later, about 12 years ago......
    now i have listhesis, stenosis, DDD, hypokyphosis, etc etc....just a mess...
    didn't see all of this coming...

    woulda, shoulda, coulda...
    just tryin' to cope with it now....

    jess

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    It is incredibly hard to know what to do in some of the adult cases. And it is probably best to avoid lumbar surgery as long a possible.

    But that second case went from a one-stop shop for surgery (because he said he could have ended it 3 levels higher at L1 rather than L4) to a "countdown" as Boachie puts it to a fusion to the pelvis. But it is really sad because pedicle screws were not around when she would have had her T curve stabilized to avoid lumbar involvement. Today, the decision might be somewhat clearer because of what is known about fusions ending above L3 or so.

    These collapse cases scare me. I hope pediatric surgeons are advising parents of kids with T curves that lumbar involvement is a possibility down the road even on presently subsurgical curves. They should start collecting data to report rates. At a minimum, they need to tell parents and patients to follow curves, even those near 30*, throughout life.
    Last edited by Pooka1; 10-23-2011 at 08:49 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."

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    absolutely...i think all kids with curves should be followed...
    it is much more likely that injuries in older patients can cause further damage and aggravate the scoliosis and
    whatever weaknesses in the spine scoli contributes to....
    but one never knows...an injury to a child or teen could start a process of increased degeneration in the same way, no matter that the spines of the kids are younger...


    jess

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    I think they need to change the standard of care for adults. Some have painful curves, like me, and some don't. It seems, though, that as I have read through the board that many adults have a lot of lumbar issues. It really makes one wonder if it would have happened anyway, but I'm thinking it's doubtful that it would be nearly as bad as it is for some of us "younger" middle aged people. I have been treated as a cookie cutter case even though I have a relatively rare curve type, upper right thoracic, which most of the doctors that I've seen had never seen before. I really don't think they even look at the bigger picture. I'll tell you for sure that I would have rather had 4 or so vertebrae fused at 16 when I had a single 39 degree curve rather than the 14 level fusion that would be required if I had the surgery today, not to mention developing DDD in L5/S1. This was a VERY good topic to bring up. Thanks!

  7. #7
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    i know several adults who do not have scoliosis who have hurt their spines...
    some have herniated discs....a few had arthroscopic surgery just for the discs...
    most of their injuries were in lumbar area...
    they are doing fine now....
    they started out with healthy spines...
    i think a key difference for any age adult is what shape their spine is in if/when they injure it....
    a healthy spine can just plain handle a whole lot that a scoli spine cannot handle!

    jess

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    Hi Sharon,

    This is an interesting thread, and I enjoyed reading Dr Hey's blog entries that went along with it.

    I am also "one of those" younger middle-aged scoli's with the so-called collapsing spine. I went into a Boston brace for a double major curve, both 32-33 degrees at age 13. I refused to wear the brace once I started high school at 14, but my curves were both around 20 degrees after I had been out of the brace for about 3 months. I never had any more spine x-rays until 3 years ago, when I started having back pain. My curves were 30 Lumbar and about 18 thoracic, with severe lumbar degeneration issues. Two years later, my lumbar was 47 and thoracic 30 degrees!--at which point I had my surgery. These measurements were confirmed by several different doctors measuring the curves.

    So no, we are definitely not the norm, but I think there are plenty of us out there that had our scoliosis start collapsing from a moderate curve into a severe and degenerated curve in middle age.

    Thanks for an interesting topic.
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  9. #9
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    Quote Originally Posted by Pooka1 View Post
    It is incredibly hard to know what to do in some of the adult cases. And it is probably best to avoid lumbar surgery as long a possible.

    But that second case went from a one-stop shop for surgery (because he said he could have ended it 3 levels higher at L1 rather than L4) to a "countdown" as Boachie puts it to a fusion to the pelvis. But it is really sad because pedicle screws were not around when she would have had her T curve stabilized to avoid lumbar involvement. Today, the decision might be somewhat clearer because of what is known about fusions ending above L3 or so.

    These collapse cases scare me. I hope pediatric surgeons are advising parents of kids with T curves that lumbar involvement is a possibility down the road even on presently subsurgical curves. They should start collecting data to report rates. At a minimum, they need to tell parents and patients to follow curves, even those near 30*, throughout life.
    I think that the problem is that the pediatric surgeons stop seeing these patients when they hit 18-21. I'm sure most of them "know" that many of these patients go on to have issues later in life, but their focus is on fixing the immediate problem and they don't worry about what is going to happen in 40-50 years.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
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    I think the problem is they might still be sending mature kids away with T curves around 30* with the thought that they are out of the woods for life.

    But a bigger problem in my opinion is that they don't warn them of potential lumbar involvement. People with T curves are just thinking about progression of the T curve and don't know to worry about lumbar involvement unless you tell them. And some of these people are still screwed because their lumbar get trashed even under subsurgical T curves. That group is truly hosed. They never stood a chance even with monitoring. This is a VERY strong argument to consider fusion for even subsurgical T curves.
    Last edited by Pooka1; 10-24-2011 at 05:20 PM. Reason: typos galore
    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."

  11. #11
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    This is where ScoliScore might be incredibly helpful. If there's a kid who is at or close to skeletal maturity, with say a 30 degree curve, but a high ScoliScore, they would probably make a good candidate for surgery now. And, on the other end, if that same kid has a 40 degree curve, but a low ScoliScore, it would probably be wise to advise them against surgery.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

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    Quote Originally Posted by LindaRacine View Post
    This is where ScoliScore might be incredibly helpful. If there's a kid who is at or close to skeletal maturity, with say a 30 degree curve, but a high ScoliScore, they would probably make a good candidate for surgery now. And, on the other end, if that same kid has a 40 degree curve, but a low ScoliScore, it would probably be wise to advise them against surgery.
    That's an excellent suggestion but only if future collapse is under the same genetic control as what Scoliscore is monitoring. It may be controlled by different genes because Scoliscore is only testing for progression in immature spines.

    Despite all the cases that Dr. Hey is posting about, it still may be that only a vanishingly small percentage of these T curves eventually collapse either in the T portion or the L portion. The T portion is one thing... the L portion is a whole 'nother game and I think patients need to be told that just because they have a T curve does NOT put them out of the woods for lumbar involvement to include fusion to the pelvis.
    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. #13
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    In Hey's opening paragraph, he refers to a new patient, "...very nice 31 yo woman from Charleston... she'd like to start a family soon..." Sounds like he might be referring to Patty22 from this group.

    Warmly,
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

    http://thebionicachronicles.blogspot.com/

  14. #14
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    Quote Originally Posted by rohrer01 View Post
    I think they need to change the standard of care for adults. Some have painful curves, like me, and some don't. It seems, though, that as I have read through the board that many adults have a lot of lumbar issues. It really makes one wonder if it would have happened anyway, but I'm thinking it's doubtful that it would be nearly as bad as it is for some of us "younger" middle aged people. I have been treated as a cookie cutter case even though I have a relatively rare curve type, upper right thoracic, which most of the doctors that I've seen had never seen before. I really don't think they even look at the bigger picture. I'll tell you for sure that I would have rather had 4 or so vertebrae fused at 16 when I had a single 39 degree curve rather than the 14 level fusion that would be required if I had the surgery today, not to mention developing DDD in L5/S1. This was a VERY good topic to bring up. Thanks!
    I meant upper LEFT thoracic. It is convex to the left and concave to the right.

  15. #15
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    Quote Originally Posted by hdugger View Post
    Does the Scoliscore predict what the curve will look like after reaching maturity? I always assumed that, once you'd stopped growing, where your curve ended up had less to do with genetics and more to do with gravity.
    That is a good question. Perhaps some of those genes that make up the scoliscore have to do with the integrity of the disc material, or perhaps loose joints, or some metabolic problem that causes the individual vertebrae to gradually grow a little off as bone is replaced. All of these things could contribute to adult progression. Remember, you don't live in the same body you had 10 years ago or so. We are constantly replacing dead cells with new ones even as adults.

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