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Thread: Overloaded...

  1. #1
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    Unhappy Overloaded...

    My daughter is 14 active competitive swimmer, was diagnosed in late 2010 with two mild/moderate curves both in the 20* range. In November of 2011 they were at 38* and 47* and I can tell today that they are larger. Having grown out of the brace she barely wore, in November got a new brace that she still doesn't wear, that now in March doesn't fit I can't even get the strap to velcro. In January I was told by the doctor and his nurse that "the scar from the brace is on the mind, the scar from the surgery is on the body" and said don't fight with her anymore about the brace, she will have to have the surgery anyway. I have read a lot of stories and seen a lot of pictures. I have been getting educated about this since first finding out. My daughter won't hardly speak of it and won't let me see her back up close anymore and my parents are in denial about any of it. I've made myself so sick over all of this and in my town there is no support groups. Will one of you please relate to me...

  2. #2
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    Ann

    Welcome to the forum.

    Im sure that some of the parents will chime in, in the meantime try not to worry too much. If she eventually needs surgery, its not the end of the world.

    Where are you located?

    Ed
    49 yr old male, now 59, 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

  3. #3
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    Quote Originally Posted by annm View Post
    My daughter is 14 active competitive swimmer, was diagnosed in late 2010 with two mild/moderate curves both in the 20* range. In November of 2011 they were at 38* and 47* and I can tell today that they are larger. Having grown out of the brace she barely wore, in November got a new brace that she still doesn't wear, that now in March doesn't fit I can't even get the strap to velcro. In January I was told by the doctor and his nurse that "the scar from the brace is on the mind, the scar from the surgery is on the body" and said don't fight with her anymore about the brace, she will have to have the surgery anyway. I have read a lot of stories and seen a lot of pictures. I have been getting educated about this since first finding out. My daughter won't hardly speak of it and won't let me see her back up close anymore and my parents are in denial about any of it. I've made myself so sick over all of this and in my town there is no support groups. Will one of you please relate to me...
    I can relate. Champion runner 10 yr old daughter, scoliosis 'appeared' last summer, brain hernia and fluid on the spine diagnosed in the Fall. Curves in the region of 40 - 44 thoracic, lumbar 37 - 40 at diagnoses (some surgeons can't count). Been exercising to correct ever since. Utterly devastated for some hours, then we started fighting it.
    Your daughter is clearly fit and strong. Correction is possible. Keep your mind open to surgery if required, but don't let that possibility stop you both having a go. Your daughter is competitive, this will stand her in great stead. There are several other mothers on here with valuable experience. (I'm a token dad.)
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...

  4. #4
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    Quote Originally Posted by annm View Post
    My daughter is 14 active competitive swimmer, was diagnosed in late 2010 with two mild/moderate curves both in the 20* range. In November of 2011 they were at 38* and 47* and I can tell today that they are larger. Having grown out of the brace she barely wore, in November got a new brace that she still doesn't wear, that now in March doesn't fit I can't even get the strap to velcro. In January I was told by the doctor and his nurse that "the scar from the brace is on the mind, the scar from the surgery is on the body" and said don't fight with her anymore about the brace, she will have to have the surgery anyway. I have read a lot of stories and seen a lot of pictures. I have been getting educated about this since first finding out. My daughter won't hardly speak of it and won't let me see her back up close anymore and my parents are in denial about any of it. I've made myself so sick over all of this and in my town there is no support groups. Will one of you please relate to me...
    Hi and welcome.

    Deep breaths. :-)

    What type of curve does your daughter have? Are both curves structural? This may help determine your time window to act. Ask the surgeon about this issue.

    I want you to know both my daughters have 10-level fusions and have gotten on completely with their lives. They don't think about scoliosis any more. They are off the treatment wagon which I'm taking from your post was very hard on both your daughter and you. There is light at the end of that tunnel. At some point you emerge and move on.

    Do NOT beat yourself or your daughter up over the brace wear issue. There is a large trial going on now where kids are randomized to a no-brace group and surgeons agree that is ethical. So don't beat yourself up. Please. The jury is obviously still out on bracing.

    It is possible to put scoliosis in a bag and move on. This is not just the only choice in many cases but the best choice.

    Deep breaths.

    Best regards,
    Sharon
    Last edited by Pooka1; 03-12-2012 at 06:12 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. #5
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    Hi Ann...

    Welcome to the forum.

    Robert Winter MD is one of the real scoliosis treatment pioneers. As far as I know, he no longer sees patients, but when he did see patients, he prescribed braces for kids when appropriate. However, he felt very strongly that a parent should not risk taking a big negative hit in terms of their relationship with their child. In other words, he felt that it was healthier to not brace a child than to brace a child, but risk hurting the parent-child relationship. I feel really strongly that this is the most appropriate strategy.

    Hopefully, you can mend the fence with your daughter. I know she doesn't want to talk about it, but perhaps she'd talk to another girl around her age who has been braced and/or had surgery. Her doctor's office should be able to put you in touch with another family. You can also see some great patient stories here:

    http://www.srs.org/patient_and_family/patient_stories/

    Scoliosis surgery is tough, but it's not the end of the world. If your daughter has to have it, you'll get through it.

    Regards,
    Linda
    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.

  6. #6
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    It's very important to make sure your daughter doesn't blame herself for needing surgery because she did not wear the brace as instructed. There is no way to know if the brace would have stopped her curve and that is a fact. Many kids wear braces needlessly also by the way but those look like wins for the brace. The honest answer is it is impossible to distinguish needlessly wearing a brace from the brace holding the curve.

    My one kid wore a brace as directed and she still needed surgery (though she might not have straight AIS but instead a connective tissue disorder that is known not to respond to bracing). There is simply no guarantee that wearing a brace has let anyone avoid surgery for life.

    Please don't let your daughter labor under ignorance about these issues. She needs to know none of this is her fault, surgery can fix this, and she will go on with her life. The lesson my kids learned is that life is unfair and bad things happen to good people. All you can do is cut your losses.
    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. #7
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    Here's a thought experiment for anyone who wants to play...

    I have seen calculations that 10 kids have to be treated for one bracing "success" and that is necessarily only in the short term. It could be that bracing only delays fusion. But that aside...

    How high would the overtreatment factor have to be before parents decided not to try bracing? 10? 20? 50?

    I have long suspected that many parents would brace even if only a 1% chance of avoiding surgery for life. I think there are some who would do so even with a 0.1% or a 0.01% chance. Perceived risk is a very dicey thing.

    Now there are modifiers here in terms of T curve versus L curve and 23 hour/day versus night-time bracing. I expect people would have lower thresholds to brace with night-time and L curves than with 23 hour/day and T curves. I know I would.

    My kid had a T curve and was given a night-time brace. She wanted to try and was compliant all by herself. I did not know the state of affairs when that was prescribed.

    The surgeon told me he would never have given her a 23-hour a day brace but I am not sure if that was specific to my daughter or if he simply doesn't use them. There are surgeons who don't brace which I can only assume are driven by the lack of evidence to date and the ethics.
    Last edited by Pooka1; 03-13-2012 at 07:52 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."

  8. #8
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    hi annm
    welcome to the forum....

    i would only like to add that age 14 is a tough age for any child/teen..and it is tougher for a girl
    with any kind of anything that makes her feel "different"
    besides having scoli, i am writing as a licensed social worker who spent her entire career working with kids...
    and i agree with several of the suggestions made already, especially AMom's suggestion to attempt a calm approach,
    as hard as that may seem to achieve right now... and waht Linda suggested about having others with experience
    with scoliosis sounds like a really good idea as well....often kids can talk to other kids before they are ready to
    discuss something with their parents...
    i think it might be really helpful for you to have a parent with experience in all of this to talk to as well...

    best of luck with whatever you do...

    jess
    Last edited by jrnyc; 03-13-2012 at 07:53 AM.

  9. #9
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    Quote Originally Posted by Pooka1 View Post
    Here's a thought experiment for anyone who wants to play...
    Annm is not "playing" at anything.

    I have seen calculations that 10 kids have to be treated for one bracing "success" and that is necessarily only in the short term. It could be that bracing only delays fusion. But that aside...
    I've seen bracing studies showing 70% + success. Depends on the curve, compliance, the brace, who fitted it. etc. I've seen numerous papers on surgery redone because of problems, point being surgery isn't "necessarily for life" either, in fact, it often entails repeat surgery for life. I've also read articles suggesting that surgery does absolutely zip to increase the quality of life for many patients.
    Annm is looking for balanced feedback here. Neither surgery, PT or bracing has any certainty.

    How high would the overtreatment factor have to be before parents decided not to try bracing? 10? 20? 50?
    There is quite the hue and cry currently about unethical/immoral/criminal haste in the US about rushing kids with <40 degree curves to surgery. I'm reliably told about some who are rushing them onto the table with 30 degree curves. Any surgeon worth their salt will inform that there is a postural element to almost all structural curves. A 14 yr old can correct below the "progression threshold".

    I have long suspected that many parents would brace even if only a 1% chance of avoiding surgery for life. I think there are some who would do so even with a 0.1% or a 0.01% chance. Perceived risk is a very dicey thing.
    I'm one of those parents.

    There are surgeons who don't brace which I can only assume are driven by the lack of evidence to date and the ethics.
    There are surgeons who do brace. Are they driven by evidence and the ethics about trying to save a kid from a lifetime of surgery?
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...

  10. #10
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    Quote Originally Posted by TAMZTOM View Post
    There are surgeons who do brace. Are they driven by evidence and the ethics about trying to save a kid from a lifetime of surgery?
    If they claim there is good evidence then they should pony it up. As that one quote from Sponseller mentioned, they will say they hope it works but they will admit that they don't have good evidence it works. That is why they brace. The hope which is probably real in some cases. I do think bracing might be shown to work in some cases though probably not many straight AIS cases.

    This is very hard field to do research. I went from being shocked at what gets published to admiring these folks for trying to do anything at all. It is easy to see why the field has not advanced much when you don't have to have controls. They are shooting themselves in the foot without controls. The problem is the condition is so variable that you can't put a control group (or a study group for that matter) together than is large enough. Things like Scoliscore, if they stand, are the best hope to start to sort patients into rational groups with rational controls.
    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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    Quote Originally Posted by annm View Post
    My daughter is 14 active competitive swimmer, was diagnosed in late 2010 with two mild/moderate curves both in the 20* range. In November of 2011 they were at 38* and 47* and I can tell today that they are larger. Having grown out of the brace she barely wore, in November got a new brace that she still doesn't wear, that now in March doesn't fit I can't even get the strap to velcro. In January I was told by the doctor and his nurse that "the scar from the brace is on the mind, the scar from the surgery is on the body" and said don't fight with her anymore about the brace, she will have to have the surgery anyway. I have read a lot of stories and seen a lot of pictures. I have been getting educated about this since first finding out. My daughter won't hardly speak of it and won't let me see her back up close anymore and my parents are in denial about any of it. I've made myself so sick over all of this and in my town there is no support groups. Will one of you please relate to me...
    We go to Sacramento, Shriners and see Dr. Gupta; he is awesome. We live in Carson City NV

  12. #12
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    Quote Originally Posted by annm View Post
    We go to Sacramento, Shriners and see Dr. Gupta; he is awesome. We live in Carson City NV
    Gupta is a top guy as far as I know. I bet you will get a great result.

    Sorry about the detour on your thread but it turned up a potentially important issue that I at least will be chasing down.
    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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    Quote Originally Posted by Pooka1 View Post
    Gupta is a top guy as far as I know. I bet you will get a great result.

    Sorry about the detour on your thread but it turned up a potentially important issue that I at least will be chasing down.
    No problem, I've heard good things and he has always been helpful.

    I do try to make my daughter's life about life and not just about her scoliosis, nor the fact that she has ADHD. She has a lot of stuff on her plate right now and has decided to take a break from comptitive swimming and focus on her school work. Not my choice, but she seems to have needed the time.

  14. #14
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    Quote Originally Posted by annm View Post
    I do try to make my daughter's life about life and not just about her scoliosis, nor the fact that she has ADHD. She has a lot of stuff on her plate right now and has decided to take a break from competitive swimming and focus on her school work. Not my choice, but she seems to have needed the time.
    rant/

    I think high school kids are being pulled in many directions and I don't know how they balance it. The requirement for outside activities particularly irks me as kids are so busy with their classwork that they scarcely have time for a bunch of teams and clubs. My kids take nothing but AP and honors classes and they have more homework than I did in college. I don't get it. One of their friends ran cross country and was taking a full load of honors and AP classes... he is often up until the wee hours sacrificing the only thing he can... sleep. And I challenge anyone to show a robust correlation between all that extra stuff and success in college which is what colleges should be looking at EXCLUSIVELY. That's their game, to educate folks, not churn out joiners. I did NOTHING extracurricular in high school and yet shared the award for highest GPA in my college department. It's nonsense and probably serves solely in the rare instances as a tie-breaker for two kids with equally high GPAs, ranks and SATs.

    I do not allow my kids to do any chores around the house. They need all available time for homework, a few activities that they enjoy though I see as serving mainly as resume items on a college application, and down time. They get spending money just for keeping up with the competition. They are underpaid.

    /rant.
    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. #15
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    hi annm
    since it was your daughter's idea to give up swimming competively for now, it is probably a
    good idea...it is possible that her body...or mind, or both... are telling her to take it easier...
    ...no matter where the message is coming from, being her own choice makes it a positive
    decision...it would not be good for her to be so overwhelmed that she started to collapse in
    one area of her life or another...
    so often kids have too much going on, and if they feel the MUST keep up all their acitivities,
    something often gives way....with negative consequences...

    jess

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