Page 2 of 22 FirstFirst 123412 ... LastLast
Results 16 to 30 of 320

Thread: How tight should a night time brace be?

  1. #16
    Join Date
    Nov 2013
    Location
    Oregon
    Posts
    25
    thanks hdugger, I will talk to the doc about it and see what they say. I just have this affliction to the steel rod and screws, that from what I hear will
    eventually break sometime down the road.....

    Pooka, sorry I didnt mean to insult you, I am a realist too but I am so upset about this scoliosis, I guess I dont want to admit to the fact
    that anything I try may end in failure. I try hard in my life to think on the positive side, I guess its the only way I can deal with this.
    I want so badly for there to be hope, not despair, and for some reason I think of surgery as failure.

    thanks of understanding

  2. #17
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by Pooka1 View Post
    As far as I know, the curvature is caused by anterior overgrowth of the spine. If bracing can't stop that growth then I am not clear on how (intermittent) PT can unless it has nothing to do with muscle. But nobody has ever shown the problem is a tight ligament or something that might be stretched. If it were that easy they could just surgically cut the ligament perhaps. They do that in horses and it is usually successful if you can believe it (for patella issues, not spine). But this isn't my field and certainly we have researchers like Dr. McIntire who think it is viable. His field so I defer.
    I have read a compilation of all scoliosis treatments done centuries ago, even surgically. Some muscles were cut and seemed to work. It was not clear the rate of success, but I donít know why everybody seems to believe that IS has an only one cause, ever the same in every case. Why not in some cases may be some tight muscle the cause, in others may be some tight ligaments, in others may be because some fascia problems or joints or discs.. if we donít perfectly understand the process leading to a straight spine, how we could know why a curve arise and grow? How we may be sure there cannot be many different causes in different cases?
    Probably even if a Super brace http://www.scoliosis.org/forum/showt...751#post154751 were done, it could fail in some cases, but it would not necessary implies that surgery would be inevitable in those cases. Probably something as Torso Rotation was needed or some different exercise combined with a special kind of massages or waves of some specific frequency. And probably in some cases nothing may work, who knows?
    But if VBS really works in every case even if staples were removed in adulthood, surely a super brace should also work in every case. And also would be true that at least a minimal subset of sufficient causes (when they are corrected, the problem is solved) are common and present in every IS case.

  3. #18
    Join Date
    Aug 2009
    Posts
    1,164
    Quote Originally Posted by FAHSAI View Post
    thanks hdugger, I will talk to the doc about it and see what they say. I just have this affliction to the steel rod and screws, that from what I hear will
    eventually break sometime down the road.....
    I've been on scoliosis forums for several years now, and I don't really see a ton of people with broken rods or screws. It happens, but not all that often. That's not to say that people with surgery are "cured" - I think there's some level of managing it for life no matter what treatment people use - but there are lots of kids who have surgery as teens and don't go on to have any significant problems. I think it's always best to try and avoid surgery - I take my cue from the surgeons who work hard to keep kids off the operating table - but I don't want you to worry about your daughter no matter how everything turns out. Even if she does go on to need surgery, she'll get through it fine. The treatments all seem kind of scary and arcane, but kids get through them just fine and go on to have perfectly normal lives.

  4. #19
    Join Date
    Nov 2013
    Location
    Oregon
    Posts
    25
    Thanks hdugger for the kind words of encouragement.

    My wife and I have told ourselves many times that it could be worse. she could have some deadly disease, cancer etc. However this has really kind of devastated our lives. Put and end to the innocence of raising children, as it were, but we do understand that together we will get through it in some way or another.

    She is our first child and I waited a long long time to have kids so she is special to me(so is our younger daughter) and I want to protect her from everything...of course I know I cant but still I want to.....

    besides that I am a fighter when I get behind a cause and I dont like to lose. Actually I hate to lose so I will do what ever I can to fix this. ( and I do realize that every parent is the same when it comes to their children).

    It's nice to have some support, thanks for that. We dont know any other parents who have a child with scoliosis and parents we feel close enough to discuss it with dont understand just how serious it is.

    take care
    Last edited by FAHSAI; 12-06-2013 at 06:36 PM.

  5. #20
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by FAHSAI View Post
    thanks hdugger, I will talk to the doc about it and see what they say. I just have this affliction to the steel rod and screws, that from what I hear will
    eventually break sometime down the road.....
    No actually they only break when there is a non-fusions which is pretty rare in kids. After fusion, the instrumentation can come out though it is rarely removed unless it is causing a problem.

    Pooka, sorry I didnt mean to insult you, I am a realist too but I am so upset about this scoliosis, I guess I dont want to admit to the fact
    that anything I try may end in failure. I try hard in my life to think on the positive side, I guess its the only way I can deal with this.
    I want so badly for there to be hope, not despair, and for some reason I think of surgery as failure.

    thanks of understanding
    Please don't worry about insulting me. Thanks for your concern.

    I have come to learn that holding a positive attitude is how some people best cope. I think that can be done without endangering the trust between parent and child but it takes careful work. I feel so much for the kids who try and try can don't succeed. Life is very unfair and it is important to manage expectations.

    I hope your daughter can avoid surgery. But I will say that while the run-up to surgery is harrowing, the reward is great. Hindsight is 20/20. Though both my daughters are fused, they never think about their backs and lead perfectly normal lives. Our family has moved past scoliosis and it is not a topic any more. I hope everyone gets to a point where they move past scoliosis one way or another.
    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
    Join Date
    Nov 2013
    Location
    Oregon
    Posts
    25
    thanks Pooka1,

    I'm happy for you and your daughters that you have gotten to a point where scoliosis is no longer an on going issue.
    I hope we can get there too but I hope its not with surgery.
    It is nice to know that people get along fine after surgery. I worked with a woman for many years who had the rods in her back and one day one of them
    broke. It was a long time ago and I didnt understand the first thing about scoliosis but I do remember it was painful for her.
    If I remember correctly though, they just took the rods out. but maybe thats just my old memory. That was 25 years ago or so, I assume there have been many improvements since then.

    I think maybe that memory might be why I am so dead set against it.

    thanks again for all your input and information it is appreciated
    Last edited by FAHSAI; 12-06-2013 at 11:39 PM.

  7. #22
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by FAHSAI View Post
    It is nice to know that people get along fine after surgery. I worked with a woman for many years who had the rods in her back and one day one of them
    broke. It was a long time ago and I didnt understand the first thing about scoliosis but I do remember it was painful for her.
    If I remember correctly though, they just took the rods out. but maybe thats just my old memory. That was 25 years ago or so, I assume there have been many improvements since then.

    I think maybe that memory might be why I am so dead set against it.
    That long ago, she might have had an Harrington rod. These attach at the top and bottom. That you say she only needed to have it removed suggested it just popped off at the top or bottom. Her fusion was probably still intact and so didn't need any further treatment. Rod breakage with the newer instrumentation almost certainly indicates an area of non-fusion which has to be re-fused and the rods replaced.

    These days, they have pedicle screw systems that attach the rods at many points. Because of this, you can get a better correction and even hyper-correction in some cases. My one daughter was hyper-corrected from 58* to "no residual scoliosis" per the report. The reason these pedicle screw systems are such an advantage is because the better the balance achieved, the better the alignment of the non-fused vertebra, the less chance of needing an extension. I think that is why our surgeon told my daughter with the now straight spine that this is one-stop shopping for back surgery in her life. And she went from an obviously twisted person with a huge hump on her back to looking completely normal. I doubt she would have been willing to leave the house if she twisted up any more. She looked like a pretzel.

    Another surgeon, in an interview, was asked what is the most important advance in this field and he said the pedicle screw.

    Getting to the point of surgery is certainly not the end of the line in terms of declaring defeat. For my other daughter, she worried that the brace would hold her (at ~40*) and she would never qualify for surgery and have to live like that out of alignment. I worried about the future living with 40* and the damage that misalignment would have wrecked. And worse of all, eventual lumbar involvement. Kids with thoracic curves who are not treated and then lose their lumbar also are the some of the saddest cases for me. They go from only needing a thoracic fusion which my kids say is not restricting (you don't bend much through the ribs) to losing your lumbar also which is a noticeable lose of motion. It is snatching defeat out of the jaws of victory. Dr. Hey makes this point continually of a stitch in time saves nine.

    For my daughters, surgery gave them back their childhood and their lives in many ways.
    Last edited by Pooka1; 12-07-2013 at 09:38 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. #23
    Join Date
    Nov 2013
    Location
    Oregon
    Posts
    25
    Thanks Pooka1,

    I happy for you and your daughters that it has worked out so well for them.
    Your descriptions of the newer system eases my thoughts about it alot.
    I guess even though I had watched videos about it and saw a model of it in the doctors office it still scared me.
    Its good to know that if it comes to that it can make their lives so much better.

    Our daughters scoliosis is confusing to me because if I look at her back when she is standing(with shirt off) it is very hard to see that it is there. Her left shoulder is slightly lower than her right and her waist is indented a bit on the right side and her right scapula sticks out slightly because of tiny bit of rib hump but that's it.

    When she leans over and I look at her spine I still cant see how it is curving.

    Of course the X-rays show it but from outside appearance its very hard to see. Anyone who didnt know she had it would not even notice it. In fact we had no clue until her doctors visit for school sports. She has no pain or discomfort at all, is Very flexible and is just a happy kid.
    We Just didnt have a clue it was going on.

    It makes us feel like bad parents because maybe earlier detection would have helped too. I guess its frustrating that there isnt more information
    out there about how to watch for this, but I know its really kind of rare compared to other more common diseases.

    She will get an X-ray in the brace on monday and then one without the brace next month, we will see how it is going then I guess.....

    thanks again for your info, I really appreciate it, and I am glad I found this forum, its a wealth of information

    take care
    Last edited by FAHSAI; 12-07-2013 at 10:31 AM.

  9. #24
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    It's very important not to beat yourself up over not seeing this. My one daughter was very asymmetrical before my friend noticed it and commented. Once she did, I noticed it immediately. It's a common phenomenon and parents should never beat themselves up over it. It is especially hard to detect in a child with balanced curves like your daughter has. My one daughter was not balanced but the other one was. The balanced one has a false double which I'm guessing your daughter has (two large curves but only one is structural). Even after knowing what to look for, the only thing I could spot was her ribs were slightly closer to her hanging arm on one side. Her curve was north of 50* at that point. So again, don't beat yourself up. :-)

    Surgery is surgery but both my kids were back in school full time between 3 and 4 weeks out. They have never looked back and I have very high hopes their lumbar was saved and they will never need an extension. They are both fused T4-L1. I asked them if they notice that they are fused. They say they feel normal. In fact they do have a somewhat smaller range of motion bending from side to side but I guess they don't remember how far they used to be able to bend so to them, they are normal. It's really a huge win for them... looking and feeling normal and saving their lumbars. It is impossible for them or me to think of surgery as having lost the game. It won them their lives in an unfair universe. I am so grateful that this surgery exists. My daughters would not have completed high school in my opinion had they not be straightened. Now they are just finishing up their first semester in college and enjoying life. That would not have been the case absent surgery.

    Just another perspective.
    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
    Join Date
    Nov 2013
    Location
    Oregon
    Posts
    25
    Pooka1,

    I am so happy for you and your daughters that it has worked out so well for them and that they are doing well and thank you for sharing all this info on surgery, it eases my mind that there is a happy ending for us if it comes to that.

    For now we will continue on the brace+TR+PT path and hope for the best but if it comes to Surgery at least I know it is not
    a sentence of pain, agony and physical limitations for the rest of her life.

    Also I know I shouldnt beat myself up over not seeing this sooner, but sometimes I just do. I feel like I should have looked at her more carefully but even if I had I probably wouldnt have know what to look for anyway.

    I still think there should be more information about how to watch for this when they are younger. I know we are really watching our younger daughter(7 yrs) now to see if we see any signs of it and she has a Dr apt monday and my wife will really quiz the doc about it for sure.

    anyway thanks again, I appreciate your input and information

  11. #26
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Coolblue,

    I just responded to your PM.

    I'm not sure why your emails were bouncing back but hopefully we can connect soon!
    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/

  12. #27
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,161
    Fahsai,

    I noticed you live in Oregon (as we do). I sent you a private message. You can find in under the Notifications tab on the upper right of your screen.
    Gayle, age 50
    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)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

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

  13. #28
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    An issue that is not emphasized with thoracic curves is the potential damage to the lumbar if the thoracic curve isn't straightened. Dr. Hey posted a story of woman who had a 30* curve at maturity which stayed at 30* but her formerly non-structural lumbar curve completely collapsed and now she is heading towards a lumbar, NOT THORACIC fusion. Incredible. Now I am assuming this is not common but there was no indication in that blog post that Dr. Hey was shocked at seeing this.

    Here's that blog post and some other relevant posts... the first one is that woman with a T30/L18 who is now losing her lumbar. Since there is no surgeon who would have fused her T curve, she was destined to lose her (formerly non-stuctural 18*!) lumbar. That is what it means to be fundamentally screwed.

    http://drlloydhey.blogspot.com/2007/...scoliosis.html

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

    http://drlloydhey.blogspot.com/2011/...in-review.html

    http://drlloydhey.blogspot.com/2013/...e-who-had.html

    http://www.scoliosis.org/forum/showt...to-save-levels

    As Dr. Hey points out, simply being out of alignment in say a false double T40/L30 at maturity over the years will cause damage to the previously non-structural areas. I would like to see stats on how often lumbars become structuralized under untreated (non-straightened) thoracic curves. I think parents should be told these stats. I think kids who have large but still sub-surgical thoracic curves over large non-structural curves are somewhat screwed because there is a likelihood of structuralizing the lumbars but no surgeon will want straighten a 40* thoracic curve (except perhaps Dr. Hey who does recognize this problem). This is what I mean by snatching defeat out of the jaws of a seeming victory with using a brace to hopefully hold a large though sub-surgical thoracic curve below the surgical threshold at maturity. I suspect eventually this strategy of having a myopic focus on keeping a thoracic curve <50* at maturity will be shown to be misguided and these kids will be stapled or tethered or fused with curves that are smaller than they are now.

    In my lay opinion, thoracic fusions are as much to stop the progression in the thorax as they are for saving the lumbar from ever needing fusion which is arguably as important if not more important.

    ps. Here is a baby otter being bottlefed to cheer folks up... :-)

    https://www.facebook.com/photo.php?f...e=1&permPage=1
    Last edited by Pooka1; 12-08-2013 at 02:49 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."

  14. #29
    Join Date
    Aug 2009
    Posts
    1,164
    Quote Originally Posted by Pooka1 View Post
    An issue that is not emphasized . . .
    I'll let Linda chime in, but nothing I've seen on any forum I've participated on suggest that a "collapsing lumbar" is a frequent outcome of an untreated thoracic curve. I've hardly seen anyone on these forums self reporting with a collapsing lumbar, so I'm assuming the condition itself isn't all that common. It is true that non-structural curves (either thoracic or lumbar) may become structural over time. I assume that surgeons are factoring this risk in when they decide whether or not to surgically treat a curve in a child or teen, and that the current 50 - 60 degree cut off balances the risk of putting a child through surgery vs. the benefit of (maybe) keeping them from having a longer fusion later on.

    From all of the long term studies I've looked at, braced kids and surgical kids are about the same as adults - neither one is more likely to be in pain, need future surgery, etc. That is, surgery doesn't reduce the risk of future surgery, and bracing doesn't increase the risk of future surgery. Assuming what I've read is a fair sample of the research, that would suggest that you want to brace to avoid surgery, since it's the less risky route. And, in fact, that's what surgeons recommend - brace in order to keep the child off the operating table.

  15. #30
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    The other issue is that there is some agreement that 30* or less at maturity is protective against future progression to surgical range. Within the range of 30* to 40*, I think there is an ethical issue with 23/7 hard bracing especially since it could be that braces only delay surgery in the subset of kids who were apparently successful with bracing at the point of maturity and who didn't wear a brace needlessly.
    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."

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •