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View Full Version : New to bracing, and it's not going well :(



BaltoMom
05-05-2011, 09:50 AM
I'm sorry if this thread is redundant, but there's so much info here that I can't zero in on my same situation. My daughter has an S curve, with the worst part being 33 degrees. She is 12 1/2 and her growth plates are still at 0. We just picked up her hard-shell brace Tuesday (I don't even know the proper term, but it comes up high under one arm, just under the chest, down to the hip bones, and has 3 velcro straps in the back).

The appointment where she tried it on seemed to go okay (and I practiced putting the brace on her once), but when I put it on her last night, it was SO hard to tighten the straps, and she was SO upset! She acted as if she wished she could rip it off, and said it was uncomfortable to stand or sit. She finally laid on her bed in it and cried herself to sleep, and I woke her up an hour later. Of course she had horrible red indentations on her skin, and she said her back hurt even more when we took it off. I don't think she was just having a temper tantrum, as her attitude has been strong and positive up until this point (other than the initial depression upon diagnosis).

Did any of you or your children have such an unpleasant beginning with your bracing? Thank so much for any experience you can share!

scolio1964
05-05-2011, 12:51 PM
Hi - sorry your daughter is having trouble with the brace. It kind of sounds like she's wearing the boston brace. My daughter wore one for 3 years. I remember the first weeks being really hard. We had to go back to the orthotist several times and it really never got comfortable. My daughter had to wear it 20 hrs a day to start with and I think that maybe if she could have started wearing it a few hours a day and then gradually work up to the 20 hrs, it might have been easier. My daughter did eventually get used to it, although we were never able to tighten it quite as much as the orthotist did. My daughter wore the brace shirts that the orthotist gave her to wear under the brace, which made it a little more comfortable. Is your daughter wearing the brace shirts? Near the end of her 3 years of wearing that brace, my daughter developed the muscle atrophy - she had a lot of pain when she would take the brace off.

My daughter is now wearing the LA brace and she has to wear it really tight too, but she's finding it easier. I don't know why except that maybe it's just because she was so used to wearing the other brace for so long. She has gotten better correction with this brace.

We are trying to avoid surgery because my daughter is a ballet dancer and the surgery would really decrease her flexibiity. That alone is the motivation that she needs to wear her brace. I don't think any brace is going to be very comfortable. My daughter has plenty of red marks on her body to prove that!! I do wish you luck with this and I hope that it will get easier for the both of you!!!

LindaRacine
05-05-2011, 01:03 PM
Hi - sorry your daughter is having trouble with the brace. It kind of sounds like she's wearing the boston brace. My daughter wore one for 3 years. I remember the first weeks being really hard. We had to go back to the orthotist several times and it really never got comfortable. My daughter had to wear it 20 hrs a day to start with and I think that maybe if she could have started wearing it a few hours a day and then gradually work up to the 20 hrs, it might have been easier. My daughter did eventually get used to it, although we were never able to tighten it quite as much as the orthotist did. My daughter wore the brace shirts that the orthotist gave her to wear under the brace, which made it a little more comfortable. Is your daughter wearing the brace shirts? Near the end of her 3 years of wearing that brace, my daughter developed the muscle atrophy - she had a lot of pain when she would take the brace off.

My daughter is now wearing the LA brace and she has to wear it really tight too, but she's finding it easier. I don't know why except that maybe it's just because she was so used to wearing the other brace for so long. She has gotten better correction with this brace.

We are trying to avoid surgery because my daughter is a ballet dancer and the surgery would really decrease her flexibiity. That alone is the motivation that she needs to wear her brace. I don't think any brace is going to be very comfortable. My daughter has plenty of red marks on her body to prove that!! I do wish you luck with this and I hope that it will get easier for the both of you!!!
Is the brace meant to be worn only at night? If so, it's not a Boston brace.

What you and your daughter went through last night is, unfortunately, pretty normal. All I can say is that it does get better.

--Linda

BaltoMom
05-05-2011, 01:09 PM
Is your daughter wearing the brace shirts? Near the end of her 3 years of wearing that brace, my daughter developed the muscle atrophy - she had a lot of pain when she would take the brace off.

We are trying to avoid surgery because my daughter is a ballet dancer and the surgery would really decrease her flexibiity. That alone is the motivation that she needs to wear her brace. I don't think any brace is going to be very comfortable. My daughter has plenty of red marks on her body to prove that!! I do wish you luck with this and I hope that it will get easier for the both of you!!!

Thanks very much for you reply. Yes, my daughter was given some sleeves to wear inside the brace. She is gradually working up to the 23 hours/day, so that is good, but I never expected her to be so uncomfortable! She will likely have to wear this thing for a few years since she still has so much growing to do. It scares me to hear that your daughter developed muscle atrophy despite being a dancer! My daughter is also a dancer, and I thought those hours dancing out of the brace was supposed to keep her strong and flexible.

In the beginning, we were afraid and pictured the brace as being horrible. Then when we saw it, it wasn't as bad as we thought. But now that she has to actually wear it and she is miserable, and I question how effective it will even be for her...this is all just very depressing.

Will your daughter's red marks eventually fade?

BaltoMom
05-05-2011, 01:16 PM
IsWhat you and your daughter went through last night is, unfortunately, pretty normal. All I can say is that it does get better.

--Linda

Thanks for your words of encouragement, Linda. I hope it gets better soon. Inside, I feel so sad for my daughter.

BaltoMom
05-05-2011, 01:17 PM
@scolio1964, I meant to ask, after 3 years, what effect did the brace have on your daughter's curve?

Pooka1
05-05-2011, 02:03 PM
Hey! You can try to over the counter pain meds. I gave my daughter some pain meds for the first several days she was getting used to her night-time brace and it was a big help.

There is no reason to suffer any more than necessary.

Good luck.

ps. Did you get a Scoliscore for your daughter?

BaltoMom
05-05-2011, 02:22 PM
ps. Did you get a Scoliscore for your daughter?

Tylenol makes sense, I guess, thanks! And no, I guess I didn't since I don't really know what that is!

Pooka1
05-05-2011, 02:31 PM
Tylenol makes sense, I guess, thanks! And no, I guess I didn't since I don't really know what that is!

The pain meds really helped my kid until she got used to the brace.

It's a genetic test that is very accurate for predicting which curves will not be greater than 40* at maturity. This group will be about 75% of the AIS cases in adolescent girls.

It is calibrated for a particular population of girls of a specific age. You can ask you surgeon if your daughter should have the test and how the results should be viewed.

BaltoMom
05-05-2011, 03:23 PM
It's a genetic test that is very accurate for predicting which curves will not be greater than 40* at maturity. This group will be about 75% of the AIS cases in adolescent girls.
.

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.

Pooka1
05-05-2011, 03:28 PM
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.

LindaRacine
05-05-2011, 03:43 PM
Unfortunately, the ScoliScore cutoff is 25 degrees, so a curve of 33 degrees would not be eligible for the test.

Pooka1
05-05-2011, 03:46 PM
Unfortunately, the ScoliScore cutoff is 25 degrees, so a curve of 33 degrees would not be eligible for the test.

(Edited) Yes this is correct.

http://scoliscore.com/Default.aspx?alias=scoliscore.com/what-is-the-scoliscore-test

* Adolescent Idiopathic Scoliosis
* Ages 9-13 years
* Self reported Caucasian males and females (North American, South American, European, Eastern European, Middle Eastern)
* Mild Curve (10 - 25 Cobb angle)

So I'm not sure what this means. Does it mean kids in this group with curves > 25* are all likely heading for surgery? That sounds wrong.

BaltoMom
05-05-2011, 09:49 PM
( Does it mean kids in this group with curves > 25* are all likely heading for surgery? That sounds wrong.

Our doctor at Johns Hopkins said that they don't normally do surgery until it's about 50 degrees. I thought the cut off was 40, but apparently not. But IF her brace keeps her curves where they are now, I guess she is supposed to live her life as is. She is experiencing a lot more back pain in the last 6 months than ever before, but it's hard to tell if it is from dance or the scoliosis. I just don't want her to live with pain all her life.

Pooka1
05-06-2011, 05:33 AM
What I was trying to get at is that there is ground between 25* (the top of the eligibility for the test) and 40* (the cut off result from the test).

Some people in this range will progress to >40* and some won't. It seems like their test could tell who is in which group but they won't allow people in this group to take the test. It is almost as if they are assuming all the people in this range will end up >40* so they don't need the test. But we know that isn't correct. So I'm still confused.

Pooka1
05-06-2011, 05:35 AM
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.

MJB
05-06-2011, 09:48 AM
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.

Pooka1
05-06-2011, 11:40 AM
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.

MJB
05-06-2011, 01:30 PM
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.

Pooka1
05-06-2011, 01:57 PM
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.

mamandcrm
05-06-2011, 04:56 PM
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).

Resilience
05-07-2011, 01:59 PM
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.

BaltoMom
05-08-2011, 10:11 PM
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?

BaltoMom
05-08-2011, 10:22 PM
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.

BaltoMom
05-08-2011, 10:31 PM
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?

Resilience
05-09-2011, 12:05 AM
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.

Resilience
05-09-2011, 12:21 AM
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.

Pooka1
05-09-2011, 05:34 AM
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.

mariaf
05-12-2011, 06:51 AM
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.

scolio1964
05-12-2011, 08:48 AM
@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!!!

BaltoMom
05-16-2011, 08:54 AM
Hi all,

Just thought I would update you all on my daughter's progress. She is currently on the wait list for VBS surgery at Shriner's, so she still must ramp up to the 23-hour/day brace wearing requirement. We had some terrible nights, lots of tears just trying to get her to complete an hour or two. I think some of her intolerance was just emotions, fatigue, and some hyper-sensitivity to the tightness sensation, but with Tylenol 45 minutes before she gets it on, we have been able to get her almost 4 hours (with breaks in between). It may not be where we are supposed to be, but it's at least progress. She even wore it to church last night. So as you all so lovingly advised me, things are improving. Thanks again for all your support!

Resilience
05-17-2011, 12:29 AM
Good for you for looking into VBS and best wishes if that is where this journey takes you.

re bracing: I think we can all relate to being happy with small steps of progress. this is such a difficult time, it does get easier.

To share with you some words that helped me early on, from this forum, is to discuss with your daughter tightness, uncomfortable and pain. Unfortunately the first two are part of the deal, she should never be in pain.

Since she's having a difficult time maybe a trip back to the orthotist would help. we saw ours several times in the first month or so: a little off here, a little off there made all the difference to my daughter!

best of luck!

Pooka1
05-17-2011, 05:49 AM
Hi all,

Just thought I would update you all on my daughter's progress. She is currently on the wait list for VBS surgery at Shriner's, so she still must ramp up to the 23-hour/day brace wearing requirement. We had some terrible nights, lots of tears just trying to get her to complete an hour or two. I think some of her intolerance was just emotions, fatigue, and some hyper-sensitivity to the tightness sensation, but with Tylenol 45 minutes before she gets it on, we have been able to get her almost 4 hours (with breaks in between). It may not be where we are supposed to be, but it's at least progress. She even wore it to church last night. So as you all so lovingly advised me, things are improving. Thanks again for all your support!

You might get better pain relief with Ibuprofen. Or maybe stacking two pain meds. It might get her to the required wear time sooner. Check with a pediatrician first of course.

Good luck.

BaltoMom
05-17-2011, 11:56 AM
@Pooka1, Thanks, probably a good idea. I used to that when they were younger and their fevers wouldn't respond to just one.

@Resilience, she did just have it trimmed to make it dig less into her legs when sitting, but her pain is mainly in the center of her back, so I think it's just a reponse to the tightness...and we're still at the "break her in" mark on the straps, not the final recommendation mark. :(

mommycat
05-20-2011, 10:54 AM
HI
Just read your thread.My daughter is 8 yrs old and has been in a Boston TSLO type brace for just about a year now.
The first 8 wks were very hard and trying for her as well as her parents.
We had to slowly wien her into it, finally getting to 22 hrs a day. They said 23 but we asked if 22 was ok since 1 hr we believe was not enought time to do anything. Doctor was okay with this.
She had terrible red marks. They are suppose to have red pressure marks but these marks should go away within 30-60 minutes. Hers were not and she ended up getting another brace that was actually tighter fitting and left barley any marks.
We too in the first 6mths were back and forth to the doctor to fix or adjust things here and there.
Amazingly your daughter will get used to it. Even though mine likes being out of her brace when she is out for too long her back will actually hurt and she will ask to put it back on.
Our doctor said this too is normal. My daughter definatly has a very long way to go in hers if it all goes well since she is only 8 yrs old.
I know it is very hard as a parent to see your children suffer. Just try to hang in there and give as much positive feed back to her as you can.
Slowly but surley she will adjust.
Oh and we too gave her tylenol or advil when she first started wearing it. She did better sleeping in it than in the waking hours at first.

BaltoMom
05-25-2011, 12:33 PM
Thank you for sharing your experience, Mommycat. It's very helpful to hear what other people have been through. My daughter is finally sleeping in the brace, but we are finding it difficult for her to put in the waking hours after school, as there's been so much going on, it's hard to find time. But we're headed in the right direction, and summer will be here soon. I can tell she will have some very sweaty experiences coming her way as the weather warms up, but we will keep the house cool and stay positive!

Anna's mom
06-01-2011, 03:50 PM
I am so sorry to hear about the difficulty your daughter is having getting used to the brace. My daughter, too, was recommended for a Boston brace after her curves progressed 7-8 degrees in four months. We were devastated.
I encourage you to check out the torso rotation strength training (TRS) thread on this forum. We decided to wait on the brace after getting a second opinion from another doc who questioned the benefit of bracing and wanted us to enroll in their bracing study. So instead we took a risk, I did some research, and we found a torso rotation machine at a nearby gym. My daughter has been doing TRS for four months and was stable (yeah!) at her last appt. I know we have only been doing this for a short amount of time, so we shall see what the future holds. I feel for what you are going through and just wanted to share our experience (so far!).

BaltoMom
06-02-2011, 08:15 AM
I encourage you to check out the torso rotation strength training (TRS) thread on this forum. We decided to wait on the brace after getting a second opinion from another doc who questioned the benefit of bracing and wanted us to enroll in their bracing study. So instead we took a risk, I did some research, and we found a torso rotation machine at a nearby gym. My daughter has been doing TRS for four months and was stable (yeah!) at her last appt. I know we have only been doing this for a short amount of time, so we shall see what the future holds.

Thanks for your input, mom of Anna. I am definitely feeling the burden of having to decide on the "right" treatment for my daughter when there's no guarantees. I don't have a lot of time to experiment with other treatments, since my daughter is almost 13 -- she won't be a candidate for VBS much longer. I hear about other non-surgical methods that seem to get results, and of course it makes me second guess getting my daughter surgery. But I keep coming back to the reality that if we try them and they don't work, then my daughter will likely be facing spinal fusion which would not give her as much freedom and flexibility as the VBS. If only we could see the future..!

I am happy for you that the exercises are working! Please keep me posted on how Anna is doing. It would be great if the medical community could get enough data where they could identify specific exercises that would become the normal recommendation for scoliosis instead of a brace.

Pooka1
06-02-2011, 11:57 AM
Baltomom, please note the potential differences between a child in the adolescent growth spurt and one who hasn't entered it. Completely different ballgame.

Ask your surgeon about this. The main increases in AIS occur coincident with growth spurts as I understand it. Just because someone is doing some exercise doesn't meant it is holding a curve, especially if they are not in a growth spurt. Researchers acknowledge this.

There are 35 people in the entire world who have their cases published w.r.t. TRS and many probably were not in the growth spurt. One of the publications consists in part of double publishing the entire dataset of a previous paper so it looks like more cases than have actually been published. Those peer reviewers were incompetent.

Good luck.

Bigbluefrog
07-05-2011, 05:56 PM
hi, my daughter was about that age when she started wearing a brace, she wears the Boston brace about 16 hours or more a day. And does some stretching exercise specific for her curves.

It helps to slowly work up to wearing the brace, did they give you a dotted line and a solid line to progress to, in the beginning it will be less tight. then as she gets used to it, slowly progress to the desired level.

My dd didn't take medicine, but we did get a special mattress memory foam topper,, 3" think from Kohl's dept store...that made it easier to sleep in it.

The worst complaints are ..its too hot, or its hard to breath. Ice packs strategically placed helps for those hot days. And just like anything good stretching and core strengthening exercise...as long as her physician is okay with it...helps for back pain.

Hang in there!!

TAMZTOM
02-07-2012, 07:27 AM
My daughter has an S curve, with the worst part being 33 degrees. She is 12 1/2 and her growth plates are still at 0. We just picked up her hard-shell brace Tuesday (I don't even know the proper term, but it comes up high under one arm, just under the chest, down to the hip bones, and has 3 velcro straps in the back).

Did any of you or your children have such an unpleasant beginning with your bracing? Thank so much for any experience you can share!

Hi BaltoMom

My daughter is 10, 11 in April, diagnosed June 2011 with 'radical' curves. She has exercised specifically ever since, achieved some correction and since December also now wears a SpineCor brace.

Your brace sounds like a night-time system, over-corrective. (Contrary to something posted earlier, Boston actually do a night-time brace.) Providence or Charleston braces seem to be common 'over the pond'.

We had a few nightmarish attempts at bracing before the SpineCor. On point was our night-time brace. Many orthotists--even the most reputable--often slam kids into prefabricated shells which are then 'beefed up' with pads, etc. I insisted on a before and in-brace x-ray on the day of fitting; without this precaution and baseline, any orthotist or surgeon's suggestion that "it's normal to have this pain", "it'll pass", etc., is speculation. Without the comparative x-ray, nothing is certain. (In our case, my daughter would have been irreparably damaged if had not been able to compare the x-rays.)

Since our experience, I've corresponded with two other parents who have experienced exactly the same type of problem, i.e., "experts" speculating to the detriment of children. Both parents had their kid refitted, correctly.

I have no idea whether your kid has been correctly fitted or not. I hope she has and that you'll both come out of this period with success.

Regards
Tom

annm
03-14-2012, 05:35 PM
My daughter just stopped wearing her "Minnesota" brace after about 6 months in she didn't want to be bothered and I couldn't make her wear it, and she never wore it as much as she should have (20 hrs).
Now that you mention atrophy...that is scary...that was a fear I always had, that her back would get use to the brace and that her curves would just pop back into place when she took her brace off, and we'd be no better off with the exception of stopping the growth of the curve.
BTW she has had pain whether the had the brace on or not. Right now I can't find comfort for her.The surgery sounds more and more necessary.


Hi - sorry your daughter is having trouble with the brace. It kind of sounds like she's wearing the boston brace. My daughter wore one for 3 years. I remember the first weeks being really hard. We had to go back to the orthotist several times and it really never got comfortable. My daughter had to wear it 20 hrs a day to start with and I think that maybe if she could have started wearing it a few hours a day and then gradually work up to the 20 hrs, it might have been easier. My daughter did eventually get used to it, although we were never able to tighten it quite as much as the orthotist did. My daughter wore the brace shirts that the orthotist gave her to wear under the brace, which made it a little more comfortable. Is your daughter wearing the brace shirts? Near the end of her 3 years of wearing that brace, my daughter developed the muscle atrophy - she had a lot of pain when she would take the brace off.

My daughter is now wearing the LA brace and she has to wear it really tight too, but she's finding it easier. I don't know why except that maybe it's just because she was so used to wearing the other brace for so long. She has gotten better correction with this brace.

We are trying to avoid surgery because my daughter is a ballet dancer and the surgery would really decrease her flexibiity. That alone is the motivation that she needs to wear her brace. I don't think any brace is going to be very comfortable. My daughter has plenty of red marks on her body to prove that!! I do wish you luck with this and I hope that it will get easier for the both of you!!!

leahdragonfly
03-15-2012, 09:48 AM
My daughter just stopped wearing her "Minnesota" brace after about 6 months in she didn't want to be bothered and I couldn't make her wear it, and she never wore it as much as she should have (20 hrs).
Now that you mention atrophy...that is scary...that was a fear I always had, that her back would get use to the brace and that her curves would just pop back into place when she took her brace off, and we'd be no better off with the exception of stopping the growth of the curve.
BTW she has had pain whether the had the brace on or not. Right now I can't find comfort for her.The surgery sounds more and more necessary.

Dear Annm,

hdugger is absolutely correct in saying that the purpose of the brace is solely to prevent curve progression. The brace is not able to correct a curve, and it is well known and expected by orthopedists that the curve will return to its original size once bracing is stopped. I think unfortunately many orthopedists don't make this clear enough to parents and kids, so some families are choosing to brace their kids under false assumptions. The brace can not correct the curve permanently in adolescents. The only time some permanent correction MIGHT be achieved is with juvenile scoliosis kids who are well under age 10.

Sorry if this comes as a shock. I truly wish the best to your daughter. I understand how scary this all is.

annm
03-16-2012, 06:20 PM
Dear Annm,

hdugger is absolutely correct in saying that the purpose of the brace is solely to prevent curve progression. The brace is not able to correct a curve, and it is well known and expected by orthopedists that the curve will return to its original size once bracing is stopped. I think unfortunately many orthopedists don't make this clear enough to parents and kids, so some families are choosing to brace their kids under false assumptions. The brace can not correct the curve permanently in adolescents. The only time some permanent correction MIGHT be achieved is with juvenile scoliosis kids who are well under age 10.

Sorry if this comes as a shock. I truly wish the best to your daughter. I understand how scary this all is.


no I know it won't correct it, I am aware that it's just supposed to stop progression, but I did have a fear of the atrophy of the muscles.