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Thread: New to bracing, and it's not going well :(

  1. #16
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    On the back pain issue, there have been some recent admissions by surgeons that AIS can cause pain though that apparently isn't the case for most kids as far as I understand this which isn't far.
    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."

  2. #17
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    Quote Originally Posted by BaltoMom View Post
    I did ask the surgeon about a DNA saliva test at our first consultation, but he said in our case it was not helpful. I guess since my daughter's curve is already 33 on the bottom of the S, and her growth plate is 0, they are assuming it will definitely progress and would not change the treatment at this time. Too young for surgery, but the brace is supposed to keep the curve from worsening. 'Gonna be a long road.... :/ I know it could always be worse, but hard to face nonetheless.

    I'm sorry she is having a hard time with the brace, my daughter did also and still does because her curve got worse and the brace isn't really fitting as well now. The red marks will fade but as long as she is wearing the brace she will have red marks on the pressure points.

    Your daughter isn't too young for surgery, although her curve isn't large enough for surgery to be required. My daughter is a year younger than yours and she is having surgery in just over a week from now. She also has a lot to grow, she has not started her period yet or anything.

    It will get better, there were a lot of tears with the brace at first with my daughter but she got used to it... Hang in there! I hope the brace is able to stop the curve from progressing, it works for some children and not others.
    Marlowe mom to Halle (age 11)
    Diagnosed January 11/08
    In Spinecor Brace for 2 1/2 years

    In the Cheneau Brace for 10 months
    Being treated at Sick Kids Hospital - Dr. Reinhard Zeller

    Surgery Scheduled at Sick Kids for May 16, 2011


    http://hallesscoliosis.blogspot.com/

  3. #18
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    I took the "too young" for surgery comment to mean skeletally immature which Risser 0 would indicate, not too young age-wise.

    I don't know if the use of pedicle screws has solved crankshafting. Maybe Linda knows.
    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."

  4. #19
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    My daughter is pre-menarchal and I doubt she is above a Risser 0... I didn't ask at her last appointment but her body, size and bone structure still looks very immature, she has a ton left to grow!

    I am worried about Crank Shafting... But the Surgeon doesn't seem to mention it.
    Marlowe mom to Halle (age 11)
    Diagnosed January 11/08
    In Spinecor Brace for 2 1/2 years

    In the Cheneau Brace for 10 months
    Being treated at Sick Kids Hospital - Dr. Reinhard Zeller

    Surgery Scheduled at Sick Kids for May 16, 2011


    http://hallesscoliosis.blogspot.com/

  5. #20
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    Quote Originally Posted by MJB View Post
    My daughter is pre-menarchal and I doubt she is above a Risser 0... I didn't ask at her last appointment but her body, size and bone structure still looks very immature, she has a ton left to grow!

    I am worried about Crank Shafting... But the Surgeon doesn't seem to mention it.
    If the surgeon doesn't seem concerned then I am guessing he thinks the pedicle screws will prevent it.

    My first kid had a low Risser also and our surgeon was unconcerned also. I think he knew he could use lots of screws. And in fact her curve has been stable for over three years post-op here. There has been no measurable change from the first post op radiograph on Day 4 until she was released last fall.

    I'm telling you this so that you know that it is possible to avoid crankshafting. If you are still worried, the surgeon will answer your questions I'm sure.
    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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    Hi Baltomom, it does take time and tears for a lot of kids, and it is really hard to watch your child struggle with it because there is only so much you can do to help. But it also really does get better for most kids, and, physically, completely tolerable. The psychological/emotional comfort might lag that a bit. Hang in there, and keep telling her the same thing. Feel free to ask any questions (my daughter has been braced for almost 3 years and wore a fulltime brace for 15 months of that time).
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  7. #22
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    Baltomom,

    I agree with the above posts that it does get easier for both the child and the parents. you are both at the difficult time now.

    My daughter is about 6 months into wearing her brace, it sounds like the same as yours, a TLSO or boston brace. A few insights for you: initially, especially after the inner pads were placed we went back to the orthotist several times with complaints of too tight here or there and he adjusted while keeping her in brace correction. you can down load the TLSO hand book on line to see what to expect if you'd like. a suggestion i learned from this site was to discuss the difference between tight, uncomfortable and pain with my daughter and to insure her that she should never have pain but the other two will be part of bracing. the child's body actually starts to mold a bit to the brace, the waist becomes defined and that helps with comfort i think, takes months. oh, and probably the most important advise for you now is to have your child slip into the brace then lay down on her tummy, on a bed, while you fasten the velcro, do the middle one first, then the top and bottom. most comfortable way and effective way to get into the brace initially per our Orthotist.

    hope that's helpful. contact me any time. i'd be glad to help.
    Resilience

    treated w Milwaukee Brace FT for 3 yrs
    currently 46 with 35 LL and 40 RT curves

    8 yr old diagnosed w Scoli 8/10 with 27 LL and 27 RT
    11/10 TLSO Full Time
    4/11 22 LL and 24 RT on waiting list for VBS at Shriners Phila
    12/11 curves still in the 20s but now has some rib cage changes from the brace
    VBS 4/25/12 with Dr. Samdani. Pre Op: 29 RT and 25 LL Post Op: 17 RT and 9 LL
    10/13: 15 RT and 10 LL

  8. #23
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    Quote Originally Posted by MJB View Post
    Your daughter isn't too young for surgery, although her curve isn't large enough for surgery to be required. My daughter is a year younger than yours and she is having surgery in just over a week from now. She also has a lot to grow, she has not started her period yet or anything.
    Thanks for your encouraging words! I am still confused though, since I was under the impression that surgery was not an option until they have almost finished growing, and again only if her curve is about 50 degrees. (I was told that she would stop growing if surgery (spinal fusion) was performed.) I am taking her to a reputable doctor at Johns Hopkins, so I assumed he was up on all the latest info. Do doctors just disagree on what's appropriate?

  9. #24
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    Quote Originally Posted by Resilience View Post
    Baltomom,
    A few insights for you: initially, especially after the inner pads were placed we went back to the orthotist several times with complaints of too tight here or there and he adjusted while keeping her in brace correction. you can down load the TLSO hand book on line to see what to expect if you'd like.

    oh, and probably the most important advise for you now is to have your child slip into the brace then lay down on her tummy, on a bed, while you fasten the velcro, do the middle one first, then the top and bottom. most comfortable way and effective way to get into the brace initially per our Orthotist.

    hope that's helpful. contact me any time. i'd be glad to help.
    Thanks so much! I didn't even know there was a handbook available! I am planning to call the orthotist tomorrow to ask about the length of the brace. I understand it is supposed to encompass the entire spine, but her little fanny is so squished together and the bottom edge is so obvious in her seat, I don't know how she could ever wear jeans over this thing!

    And your approach to putting it on is interesting to me; the orthotist stressed the importance of tightening the bottom strap first. Now I'm wondering why.

    I did just order my daughter a memory foam mattress in hopes making it more comfortable for her, as her mattress is very firm. So far she has either laid on her back in the sofa recliner, or the first night she slept on her side when she cried herself to sleep.

  10. #25
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    Quote Originally Posted by Pooka1 View Post
    Okay.

    Did the surgeon mention vertebral body stapling? If she has lots of growth left, that would get your daughter out of the brace potentially.

    Here's an informational web site run by parents including Maria and others on this forum. You can ask questions if you have any.

    http://www.vertebralstapling.com/

    Good luck.
    Thanks again for the info & support. I opted to go to Johns Hopkins because I thought they would have just as much state-of-the-art treatment as Shriner's in Philly, and JH is closer to us. I see now that the vertebral body stapling is done at Shriners but not at JH, so I am second-guessing my choice.

    I would love to know more about VBS. First, how long has this procedure been done/success rate/risks/unfavorable outcomes? And what would be so important to my daughter is whether you can still dance with the same flexibility after having the surgery. Maybe that's why JH didn't mention it as an option?

  11. #26
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    I agree to check out VBS with Dr Betz and his team at Shriner's in Phila. While JH is amazing, i think that Shriners Phila has a reputation as a leader in Scoliosis with ground breaking work with VBS. I would at least look into it as your daughter is premenarchal and riser O, she may meet the criteria and there is a narrow window. Contact Janet, the PA with the spine team at janetcerrone@comcast.net I have the latest article by Dr Betz on VBS from Spine 2010 but am having trouble attaching it for you.

    It seems that specialists who do not perform VBS are not likely to mention the option to parents. Mine did not as well.
    Last edited by Resilience; 05-12-2011 at 08:47 AM.
    Resilience

    treated w Milwaukee Brace FT for 3 yrs
    currently 46 with 35 LL and 40 RT curves

    8 yr old diagnosed w Scoli 8/10 with 27 LL and 27 RT
    11/10 TLSO Full Time
    4/11 22 LL and 24 RT on waiting list for VBS at Shriners Phila
    12/11 curves still in the 20s but now has some rib cage changes from the brace
    VBS 4/25/12 with Dr. Samdani. Pre Op: 29 RT and 25 LL Post Op: 17 RT and 9 LL
    10/13: 15 RT and 10 LL

  12. #27
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    Location
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    Quote Originally Posted by BaltoMom View Post
    Thanks so much! I didn't even know there was a handbook available! I am planning to call the orthotist tomorrow to ask about the length of the brace. I understand it is supposed to encompass the entire spine, but her little fanny is so squished together and the bottom edge is so obvious in her seat, I don't know how she could ever wear jeans over this thing!

    And your approach to putting it on is interesting to me; the orthotist stressed the importance of tightening the bottom strap first. Now I'm wondering why.

    I did just order my daughter a memory foam mattress in hopes making it more comfortable for her, as her mattress is very firm. So far she has either laid on her back in the sofa recliner, or the first night she slept on her side when she cried herself to sleep.
    I'd go with what your Orthotist advised since he is there and I am cross country, that was just our experience and it works for us. we have a custom TLSO and a very experienced Orthotist. The skill and experience of the brace maker is important.

    Is your daughter's brace custom made or off the rack and customized?

    Jeans: do not work very well unfortunately. luckily leggings are in with long tops, or dresses or skirts with elastic waists. That's what works for my daughter.

    sleeping: my daughter sleeps on her tummy in bed, sometimes on her side.

    activities: wears it to school, runs, plays, does monkey bars and hulla hoops with it on.
    Resilience

    treated w Milwaukee Brace FT for 3 yrs
    currently 46 with 35 LL and 40 RT curves

    8 yr old diagnosed w Scoli 8/10 with 27 LL and 27 RT
    11/10 TLSO Full Time
    4/11 22 LL and 24 RT on waiting list for VBS at Shriners Phila
    12/11 curves still in the 20s but now has some rib cage changes from the brace
    VBS 4/25/12 with Dr. Samdani. Pre Op: 29 RT and 25 LL Post Op: 17 RT and 9 LL
    10/13: 15 RT and 10 LL

  13. #28
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    Quote Originally Posted by BaltoMom View Post
    Thanks for your encouraging words! I am still confused though, since I was under the impression that surgery was not an option until they have almost finished growing, and again only if her curve is about 50 degrees. (I was told that she would stop growing if surgery (spinal fusion) was performed.) I am taking her to a reputable doctor at Johns Hopkins, so I assumed he was up on all the latest info. Do doctors just disagree on what's appropriate?
    All surgeons agree it is a balancing act as to when to fuse a rapidly progressing large Risser 0 curve. There are advantages and tradeoffs in both cases. As far as I can tell, they tend to fuse low Risser curves in AIS but not JIS because the pedicle screws can avoid crankshafting in AIS when little growth is remaining but not necessarily with JIS when lots of growth remains and the torso would appear shortened even if crankshafting is avoided.
    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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    Quote Originally Posted by BaltoMom View Post
    Thanks again for the info & support. I opted to go to Johns Hopkins because I thought they would have just as much state-of-the-art treatment as Shriner's in Philly, and JH is closer to us. I see now that the vertebral body stapling is done at Shriners but not at JH, so I am second-guessing my choice.

    I would love to know more about VBS. First, how long has this procedure been done/success rate/risks/unfavorable outcomes? And what would be so important to my daughter is whether you can still dance with the same flexibility after having the surgery. Maybe that's why JH didn't mention it as an option?
    Hi BaltoMom,

    I realize we've been chatting off-forum, but I wanted to comment here as well. I'm glad you are investigating VBS (because I think folks should consider all options available) and hope to see you as well on the VBS site. There you will find some great information and a lot of parents willing to share their experiences with you. You can also get answers to most of your questions either from the parents there - or from the articles and information we have on the site. Janet and Dr. Betz often provide us with this information and data to use so the accuracy is not an issue :-)

    But the best place to get your questions answered about VBS is at Shriners, Phillly, which I believe you will be going to soon. I always tell folks that they have nothing to lose by seeking a consult there. The medical team, in my opinion, is second to none when it comes to scoliosis (particularly in younger children where many orthos, including our former one, lack experience). Remember, too, that they are a hospital entirely devoted to orthopedic problems in children - you can't get much more specialized than that!

    As for flexibility following VBS, my son is 100% as flexible as he was before - he is an avid baseball player and the surgery has not inhibited him at all. In fact, one of the advantages of VBS over fusion is that is DOES preserve flexibility.

    I have heard of a couple of exceptions, but I agree with Resilience that the majority of surgeons who do not perform VBS do not usually mention it as an option. They tell you what they have to offer as treatment options, I suppose.

    Best of luck and please keep us posted.
    Last edited by mariaf; 05-12-2011 at 06:54 AM.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  15. #30
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    Quote Originally Posted by BaltoMom View Post
    @scolio1964, I meant to ask, after 3 years, what effect did the brace have on your daughter's curve?
    My daughter's curve stayed stable during the 3 years until January - it worsened by about 9 degrees. It went from 27 degrees to 36 degrees out-of-brace. I know that there is a margin of error, but it was clear that her curve was progressing. That's when I started looking into other things and found the LA brace. She has worn the LA brace for almost 2 months and her curve is down to 29 degrees out-of-brace and 14 degrees in-brace. And, she is just now starting the Schroth exercises, so we are hopeful that her back will, at the very least, remain stable.

    She is 14 1/2 and is at Risser 0, so she still have a lot of growth as well. For now this is working for her and it's still allowing her to dance the way she wants to dance.

    I wish you and your daughter the best of luck!!!

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