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Thread: (moved response) Bracing decisions

  1. #1
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    (moved response) Bracing decisions

    I moved this response to a new thread to avoid the hijack that I started. (Also, for some reason the copy/paste didn't grab my quotes.)

    Quote Originally Posted by txmarinemom
    Sharon, this was exactly the case with me (my curve was barely visible to the untrained observer), and I had a 53 right thoracic curve, apex at T9 ... and a +2 rotation.

    My rib hump never showed (Really. Not at all.) unless I bent over. If I bent over to deliberately show someone, THEN they'd proclaim "Oh, MY GOD!". If I bent over in a normal day to retrieve something I'd dropped, no one ever commented.

    My shoulders were level. My right shoulder, however, was rotated forward in the socket; I learned to compensate posturally to a large extent. I was also able to tighten my abs and temporarily flatten out the right front protruding rib cage edge area.

    This shot was taken in a photoshoot I did about 2 years ago, and you tell me ... do you see a 53 curve there? It certainly doesn't resemble what you'd think my pre-op A/P x-ray would show in "real life", eh?
    No I can't see anything amiss there. No curve, no asymmetry. That's amazing.

    Quote Originally Posted by txmarinemom
    I believe a 33 - or higher - curve CAN remain stable: Mine held at 53, and as I said earlier, I had 30 years of x-rays to track it.

    Understandably, you can't be convinced Willow's curve will remain stable because they don't know enough about why some progress and some don't.

    What I will tell you is it's widely believed a curve in the range of 50 can *generally* (in fact, most often) be expected to progress at a rate of 1 per year. Mine did not.

    I'd ask you to consider all this when you decide whether bracing (especially since it's currently just a nightime regimen) is worth it for Willow. My case (anomaly or not) proves not only that a curve *can* hold, but a curve quite a bit more severe than 33 can hold.
    Actually, I think there is just as much chance Willow's curve will hold without the brace given there was no measurable change for several months before the brace. So she went into the brace from at least a quasi-stable situation w.r.t. the curve progression. Of course we will never know what, if anything, the brace did because she can't be both the control and the subject! Her twin is out as a control.

    Quote Originally Posted by txmarinemom
    Willow could very well fall into a subset of patients who ARE held in check by a brace, and I'd hate to see her progress unnecessarily. And, yeah ... I know ... "where's my ^*%& crystal ball?!". Only you can decide what's best for her, but I'd ask that you remember my case when you do.

    Yes, I went on to have fusion as an adult, but ONLY for pain; NOT to halt a progressing curve.
    Yes but needing surgery as an adult for curve progression or pain is really academic... it still translates into surgery as an adult. A miss is as good as a mile as they say. Even if she doesn't progress much past the mid 30s, she may have pain that requires surgical intervention. Or she could have pain in other parts of her spine.

    Quote Originally Posted by txmarinemom
    If you look at my x-ray timeline, my compensatory lumbar curve appears to have worsened *post-op*. Actually, correction of my structural thoracic curve simply forced my body to compensate in areas that were tight. I fully expect as time goes on (and Hanson has told me continued correction can be expected for 6 months or more), my compensatories will "fall out" as those muscles loosen. Hanson has also projected that to be the case from very early on. I'm quite excited to see my next round of x-rays ... the last batch was taken at 8 weeks post-op.

    Honestly, I wouldn't be overly concerned with her lumbar curve if it's truly compensatory. It's easy to understand your worry, but it's also not a case of "if you make that face it's going to stick that way!".
    LOL.

    Quote Originally Posted by txmarinemom
    If Willow's structural curve stays under surgical intervention level, her lumbar compensatory will simply balance it. Remember, many people have balanced curves in the 30-40+ range, and they live with no pain. Just like everything else about scoliosis, nothing is a given.
    But are there really a lot of people who go through life with curves like that without pain eventually?

    Quote Originally Posted by txmarinemom
    If she progresses, and *does* need surgery, her compensatory will be addressed via correction of the structural curve - and more likely than not, she'll suffer no ill effects from compensation.



    From some of the stories on here, I can well understand your fear of adult surgery. I also understand you want definite answers to questions you just can't get right now.

    Sharon, don't think of it as "if she doesn't wear the brace and the curve doesn't move, she's over a barrel anyway ...". This isn't BAD, this is the best imaginable scenario (and I'm sure it doesn't feel that way).

    33 is actually a mild to very moderate curve, and I don't know of any surgeon who would perform fusion surgery (without a solid history of progression) on an adolescent OR adult at that level of curvature.
    Yes I know that she is not a surgical candidate at that curvature. I wish I knew if there were lots of folks with that curve who made it through life without pain or progression.


    Quote Originally Posted by txmarinemom
    Please keep in mind that the adult stories you read on here are just as likely to be *atypical* as *typical*. People who don't experience difficulty with fusion surgery aren't generally going to gravitate to a support forum.

    Yes, adolescents are *generally* expected to have better outcomes, better correction and easier recovery. That also doesn't guarantee fusion is as easy on every teen as it was on Savannah, Kimmy or Elysia - nor does it guarantee fusion is a nightmare for every adult. Unfortunately, there are teens on here who had a *much* tougher recovery than I did at 39 years old.

    Bottom line is all you can do is wait and watch right now. Willow can increase her chances of successful surgical intervention (IF ever required) by doing all she can to stay limber and flexible.

    I wish I could be of more help, but all I can do is offer you hope. Hang in there.
    No, that was a help because it was another perspective. I feel like Willow's situation is trying to keep several plates spinning at once. So many things to consider with so little longitudinal data. Our hands are tied in many ways and that's not bad. Maybe it is the case that the vast majority of folks who make it into adulthood with a mid 30s* curve never progress and never have pain. That would be good to know. But if that isn't the case, then I still come back to the issue of whether bracing is a good idea or not if it only delays surgery into adulthood.

    Thanks,
    sharon
    Last edited by Pooka1; 05-18-2008 at 03:01 PM.

  2. #2
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    Quote Originally Posted by Pooka1
    No I can't see anything amiss there. No curve, no asymmetry. That's amazing.
    Yeah ... *everyone* who saw my initial x-rays were shocked, including my Mom. I think it had just been so long (10 years) since I'd had films done, she'd forgotten how it actually looked.

    I initially had an issue with push back from my company's HR girl on me working from home/utilizing short-term/long-term disability part or full time. I emailed her my x-rays, and her tune changed *completely*.

    In one way, I was very fortunate it didn't show, but on the other hand, having to prove it existed - and justify I WAS in pain - was an annoyance.

    Quote Originally Posted by Pooka1
    Actually, I think there is just as much chance Willow's curve will hold without the brace given there was no measurable change for several months before the brace.
    That's entirely possible. As I've said many times, some curves will be held by no type of brace, some curves will be held by any type of brace, and some curves will remain static with or without a brace.

    Only you and your doctor can make the choice what's best for her.

    I will say, if it were me (and no, it's not), I'd have her wear it. I can't say for certain I'd say the same if it were a Boston or a Milwaukee 23/7. A night time brace, however, would be an easy decision for me - just in case ... and to know I tried all I could whether it results in surgery or not.

    Quote Originally Posted by Pooka1
    Yes but needing surgery as an adult for curve progression or pain is really academic... it still translates into surgery as an adult. A miss is as good as a mile as they say. Even if she doesn't progress much past the mid 30s, she may have pain that requires surgical intervention. Or she could have pain in other parts of her spine.
    It's academic, yes, but what you may not know is I had back pain non-stop from the time I was 10 years old. If Willow doesn't have pain now - and her curve doesn't progress - I'd say there's a possibility she may *never* have scoliosis related pain.

    Again, remember the majority here DO have pain, and often that pain is what led them to join this group. I think I read once there are 8,000 members on this forum (I could be wrong ... that just rings a bell), and nowhere NEAR all of them post. If scoliosis truly affects 2-3% of the population, where are the rest of us?

    Are they living their lives (pre-op OR post-op) in pain or pain free? We'll never know. What has been shown, however, is most adults - scoliotic or not - report back pain.

    My 18 year old daughter has a slight lumbar curve, and my best friend (46 years old) has a (I'm estimating here ... about 30-35) lumbar curve. She hasn't had it checked in years, but the severity is enough her back jean seam is always twisted out of line.

    Neither of them has ANY pain.

    I know it's in your nature to want facts: Reality is, "data" and associated "logic" (for prediction of the future effects of a currently static curve) is fuzzier than bone fusion on my hardware in an x-ray.

    "May" and "could" and "if" will drive a parent to tears: Until something - or nothing - happens with Willow's curve, you simply won't know what lies ahead.

    Quote Originally Posted by Pooka1
    I wish I knew if there were lots of folks with that curve who made it through life without pain or progression.

    ... Maybe it is the case that the vast majority of folks who make it into adulthood with a mid 30s* curve never progress and never have pain. That would be good to know. But if that isn't the case, then I still come back to the issue of whether bracing is a good idea or not if it only delays surgery into adulthood.
    Well, we know there are people who don't progress (me, for one). I personally know two people (very well) who have moderate curves and absolutely no pain. They certainly can't be the only ones.

    It would be good to know how many others are out there, but that information simply isn't available.

    Out of curiousity, what is her doctor's view on the brace? Obviously he prescribed it ... does he still think she should wear it?

    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
    EMAIL ME

  3. #3
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    Quote Originally Posted by txmarinemom
    It's academic, yes, but what you may not know is I had back pain non-stop from the time I was 10 years old. If Willow doesn't have pain now - and her curve doesn't progress - I'd say there's a possibility she may *never* have scoliosis related pain.
    When did you curve stop moving? As a child or as an adult?

    Quote Originally Posted by txmarinemom
    Well, we know there are people who don't progress (me, for one). I personally know two people (very well) who have moderate curves and absolutely no pain. They certainly can't be the only ones.

    It would be good to know how many others are out there, but that information simply isn't available.

    Out of curiosity, what is her doctor's view on the brace? Obviously he prescribed it ... does he still think she should wear it?
    Based on his comments which I reported in another thread, if there was no such thing as a night-time brace, he would not have prescribed any brace for her. I suspect he thinks the jury is out on whether bracing does anything or perhaps the cost outweighs the benefits in his mind given how successful he views surgery. I don't know his reasons, I'm just guessing.

    I have not brought up the angle that bracing, even if it works in adolescence, might only delay as opposed to avoid surgery in some cases. When I see him again, I'll ask about that. But it won't be until around Thanksgiving and my memory will likely fail me on this before then.

    In re Savannah and the orthopod, she presented as a 29* and he did not brace her. My guess is that he does not brace anyone but I don't know that for a fact. On the next visit, she was a 48* (Sept-Jan) at which point we were told she needed surgery and were referred to Dr. Campion. And of course she went up to 58* at surgery. I don't believe any brace could have held that curve and I think Savannah would have been very uncomfortable as the curve moved that much within the brace. But I don't know that. I don't know a lot of things and unfortunately neither do surgeons. I'm just relieved Savannah has never been braced and had a good surgical correction.

    Maybe the rate of progression correlates with the degree of rotation. Savannah was very rotated very early and maybe the orthopod noted that that correlates with progression despite bracing. Willow has very little rotation and has not progressed even absent the brace. I wonder if anyone has crunched the numbers on that, not that they necessarily exist. In fact I doubt they do.

    sharon

  4. #4
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    Quote Originally Posted by Pooka1
    When did you curve stop moving? As a child or as an adult?
    Adolescence. I don't recall *exactly*, but it was sometime in my early teens.

    Back then, prevailing school of thought was you stopped growing at menarche - and the curve would never progress past that point.

    Mine didn't, but many, many others did.

    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
    EMAIL ME

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