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Thread: Brace check-up and some banter

  1. #16
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    But the surgeon claims 50* and above is the time you start to worry about significant progression leading to surgery in a lifetime, not below that.

    Sharon,
    My daughter was diagnosed at the age of 12 with a Scoli curve of 36*. Within a year, she was skeletally mature and her curve was 46* and still progressing. We all know each person is different. Just wanted to share Jamie's experience as you do your research.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  2. #17
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    Sharon, sound like you got some good news and some interesting answers! Don't you love those satisfying appointments? I do find it very fascinating that with a 40 degree curve she has no rotation. (my daughter's pre brace curve was approx 20 and yet she already had rotation - just shows how unique each case is).
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  3. #18
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    Sorry, Sharon ...

    I didn't even say what GREAT news that is about Willow! After seeing Savannah's success, I'm sure she did have her mind set on being "done" with it (hopefully in a forever kind of sense). As amazing as surgery is these days, I hope she'll realize she really did end up the lucky one - unfused and in no pain. Hopefully it stays that way.

    In another thread, I'm sure I seemed anti-brace. As I wrote someone earlier, it more accurate to say I'm not PRO-brace because anomalies often seem to be the majority with scoliosis. I just can't see fathom how any bracing study could ever be completed in the absence of clones (even monozygotic twins vary too much for comparison).

    Debbe's case, my case, MaryLou's Jamie's case, and Jill's daughter's case (among too many others to mention) just demonstrate the variances in the population.

    One thing that appears somewhat more common (at least in my observation) is that rotation seems to manifest more frequently with JIS. Has anyone else noticed (or imagined - LOL) a correlation?

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
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  4. #19
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    Quote Originally Posted by txmarinemom View Post
    One thing that appears somewhat more common (at least in my observation) is that rotation seems to manifest more frequently with JIS. Has anyone else noticed (or imagined - LOL) a correlation?
    Sharon - congratulations to Willow for a successful appointment. Those are always nice, emotionally. I do know that nagging feeling you'll have in the back of your mind, wondering if a 40+/- degree curve is a stable curve. Best wishes for more appointments like this one.

    Pam - my daughter (now 23) has a lumbar curve with significant rotation. The curve measures about 30 degree now (had been measured as high as 39 degrees). Her's was diagnosed on her 13th bday. I know her's is typical adolescent scoliosis, not JIS. Significant rotation (in my book) makes no difference when the diagnosis was made. (That's not a grammatically correct sentence - ugh.) In all the talk about whether or not bracing is effective, I honestly don't think there is a way to get a good, scientific study done. Too many variables involved. Every person's body is so different, in make up, that no two are alike. Therefore, no two can be compared (extreme example, I know, but still). I am very happy Willow has no rotation (fabulous news, that, alone). With Kara's significant rotation, she was borderline for deciding if surgery would help. She (and docs) chose no surgery at the time, but careful monitoring (yearly xrays) as she gets older. So many things to consider.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  5. #20
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    Quote Originally Posted by txmarinemom View Post
    Research has shown that in adolescent idiopathic scoliosis, curves more than 50 degrees tend to show steady stepwise progression in adulthood at a rate of about one to two degrees a year. Although many smaller curves tend to remain stable into adulthood, there are some that continue to show unexpected adult progression despite falling initially short of the 50 degree magnitude."
    The first part of this is what I was told. I wonder how many smaller curves progress to surgical territory over a lifetime.

    This view is all I've ever read in about the last 10 years from the experts. I know I've seen studies on the progesterone link ... and will try to dig them up.
    Thanks. I'll email them to the surgeon for comment.
    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 debbei View Post
    Sharon, this is how I view it in my case. I am SO thankful that I didn't have surgery back in 1976 when my scoliosis was discovered, as the surgeons recommended. My parents wanted to try the brace, and 'allegedly', it 'worked.' Although now I consider it a failure, what it did was buy me lots of time for medicine to advance. So, even if EVENTUALLY Willow has to have surgery when she is an adult, the surgical procedures most likely will be much better than what is available today. I don't know that ANY of us are ever truly 'done' with scoliosis. Lord knows I wish it were true.
    Yes this is the way I have to look at it. It's just that if what the surgeon says is true, that adults have a harder time because they have more issues being fixed than kids (on average), then that means the longer you have scoliosis the more associated problems you have. So even though the surgical techniques might be better, she will likely have more damage at that point to be fixed.

    The techniques are good enough now that I wonder if they will lower the surgery trigger point to 45 or even 40 to avoid that if it can be shown that a large percentage of folks at ~40* will progress to surgery territory in their lifetime.
    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."

  7. #22
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    Quote Originally Posted by RugbyLaura View Post
    Sharon, your post made me smile from ear to ear. I know just how wonderful that expected good news (and glimmer of hope) feels, from our appointment last month.

    Long may it continue!

    Laura x
    Thanks and congratulations on your last appointment!
    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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    Quote Originally Posted by Snoopy View Post
    But the surgeon claims 50* and above is the time you start to worry about significant progression leading to surgery in a lifetime, not below that.

    Sharon,
    My daughter was diagnosed at the age of 12 with a Scoli curve of 36*. Within a year, she was skeletally mature and her curve was 46* and still progressing. We all know each person is different. Just wanted to share Jamie's experience as you do your research.

    Mary Lou
    Well 46* at maturity is within the precision of the magic 50* so I guess they would expect her to progress at 46*.

    If Willow gets to 45*, I'm going to suggest that is indistinguishable from 50* and ask if it is still sub-surgical.
    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."

  9. #24
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    Quote Originally Posted by jillw View Post
    Sharon, sound like you got some good news and some interesting answers! Don't you love those satisfying appointments? I do find it very fascinating that with a 40 degree curve she has no rotation. (my daughter's pre brace curve was approx 20 and yet she already had rotation - just shows how unique each case is).
    Unique is right. Savannah's curve was extremely noticeable at a much lower angle due to the rotation. She was quite rotated and I was amazing how much of that they were able to correct.

    Willow's curve is so different from that.
    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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    Quote Originally Posted by txmarinemom View Post
    I didn't even say what GREAT news that is about Willow!
    Thanks, Pam.

    One thing that appears somewhat more common (at least in my observation) is that rotation seems to manifest more frequently with JIS. Has anyone else noticed (or imagined - LOL) a correlation?
    Well, as I've mentioned, I don't think Frick and Frack here have AIS but rather scoliosis associated with a connective tissue disorder. If so, and based on just their case, rotation is HIGHLY variable, ranging from extreme to almost none.
    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. #26
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    Quote Originally Posted by Carmell View Post
    Sharon - congratulations to Willow for a successful appointment. Those are always nice, emotionally. I do know that nagging feeling you'll have in the back of your mind, wondering if a 40+/- degree curve is a stable curve. Best wishes for more appointments like this one.
    Thank-you, Carmell.
    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. #27
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    Sharon,

    That is wonderful news that you had a positive appointment. We all hope and pray for those as the dreaded appointments near!! No rotation is amazing!!


    Originally Posted by debbei
    Sharon, this is how I view it in my case. I am SO thankful that I didn't have surgery back in 1976 when my scoliosis was discovered, as the surgeons recommended. My parents wanted to try the brace, and 'allegedly', it 'worked.' Although now I consider it a failure, what it did was buy me lots of time for medicine to advance. So, even if EVENTUALLY Willow has to have surgery when she is an adult, the surgical procedures most likely will be much better than what is available today. I don't know that ANY of us are ever truly 'done' with scoliosis. Lord knows I wish it were true.


    This is a good way for all of us dealing with scoli to look at it. If we can "buy"
    time, maybe something will come along that will help us to avoid surgery or at least reap the benefits of new scientific procedures.

    Because I went through decompression surgery with Emily when she was 5, I was terrified at the thought of a possible fusion. As the years passed, with no progression and no brace, that anxiety grew. There seemed to be no viable option except to wait and watch and LET her progress!! When I finally started to consider bracing, a hard brace wasn't an option in my mind. When I thought it was not even worth a shot to try the Spinecor, it actually CAME to me. The chiro that braced her was actually setting up an office less than 5 minutes from my house! He contacted me!

    I don't know if the Spinecor is going to prevent my daughter's curve from progressing, nor do I know if it is even holding her curve right now. What I am most hopeful for is that it is buying me time!
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  13. #28
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    Emarismom, Thanks.

    Buying time is really the name of the game with JIS (and some AIS cases). I really hope some of these approaches pan out.
    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."

  14. #29
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    Forgot to mention something during the exam...

    At one point, the surgeon asked Willow to bend forward and touch her toes. She couldn't get closer than about 8" and he said she had tight hamstrings.

    The reason I find this curious is that Willow has a diagnosis of hypermobility syndrome, a hallmark diagnostic test for which is being able to not only touch your toes but lay you palms flat on the ground. And that wasn't the only test she "failed" for hypermobility syndrome.

    On the other hand, I have always been able to lay my palms flat on the ground but I know I would have failed many, if not most, of the other tests for hypermobility syndrome.

    Complexity and perplexity.
    Last edited by Pooka1; 03-07-2009 at 08:21 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."

  15. #30
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    [QUOTE=Pooka1;72660]Forgot to mention something during the exam...

    At one point, the surgeon asked Willow to bend forward and touch her toes. She couldn't get closer than about 8" and he said she had tight hamstrings.QUOTE]
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

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