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tikkasmom
11-22-2004, 09:03 PM
My 12 year old daughter just got her TLSO brace today. The orthotist is not very easy to talk to so I'm glad I have this forum to go to.

The rise on the brace that comes up under her arm is so high it digs into her arm and hurts. She is leaning way to the side now to avoid it. The orthotist says "she'll be used to it in two weeks".

Also the bottom of the brace is digging into her thighs leaving pink rash like marks after only a few minutes. She says it feels like pinching and it hurts. Is this normal??? The rest of the brace seems ok to her. Anyone else have these problems?

The orthotist only spent about 10 minutes with us and any complaints my daughter made were brushed off.

We've had alot of tears today so I'm hoping I can give her some encouragement.

Tikkas Mom

dancermom
11-22-2004, 09:41 PM
Hi Tikka's Mom. My daughter got her brace about 2 1/2 months ago. We have had many days and nights of tears trying to get used to the brace. My daughter's orthotic person is a lady and she has been really good at talking to her and helping her know what to expect - unlike the orthopedic doctor. Anyway, the orthotic lady trimmed a little under her armpit as it did come up a little too high. As far as the hip area, my daughter has to wear her pants under the brace or it really bothers her hip. Is your daughter pretty thin where there isn't much cushion between the brace and bone? My daughter is thin and it does tend to rub. The best thing I can tell you is it does get better over time. You really may have to be your daughter's advocate though and make a phone call to talk to the orthotic person and explain what you are feeling and what is going on with your daughter. This brace is something that she is going to have to wear for quite a while and you don't want her to be more uncomfortable than necessary. Best wishes and keep us informed as to how her progress is coming. My daughter also has the TLSO brace.

Dancermom (Connie)

Kimber
11-23-2004, 01:03 AM
Hi tikkas mom,
My experience with my daughter's initial brace fittings were pretty good. Her orthotist was patient and really took his time. He also listens to her and ask her how things feel. Now the underarm that you refer to is common. The point is to provide resistance on that side from the pushing from the other side. If you can get from the orthotist the special orthotic t shirts she can pull the fabric up over the brace and it helps. She will get used to the underarm piece. The part that touches the thighs should not dig into her when she walks or sits. That part can be trimmed. That is one of the areas that our orthotist trimmed when fitting the initial braces. Catherine is into her second brace after one year. She outgrew the first one. Her newest brace (just got it last week) is much more aggressive in its (pushing). The first couple of days she was a little angry with how it felt but was told to take it very slow wearing it and to build up her hours. After just 4 days the anger and complaints have really subsided. Give your daughter some time but trust your instincts if you think the brace could be improved. A good orthotist can tweak it and not compromise it's function. I'm sorry to hear that the orthotist was as brief as he was with you. Are there other orthotist you could see in the practice? God bless!

celestin1170
11-23-2004, 05:17 PM
My daughter also wore the same brace. It is common for the brace to rub under their armpit. They keep it high to push their body into the right position. My daughter's did also. But our ortho was wonderful. Our fitting took a couple of hours because she would try it on and then let him know what was hurting her and he would draw in pencil where he should cut it down to and then she would try it on again and let him know how that felt. He didn't let us leave until she was completely comfortable about how it felt on her.
We were also able to get special undershirts that came down past her hips to help with the rubbing.
If the brace is hurting her, tell your ortho. They should be able to fix it. They can also heat up the plastic and mold it more in the hip area if the fit isn't right. We've had to do that also!!
The most important thing is to stress to her how important it is to wear her brace. We fought with my daughter everyday to wear hers and most of the time she refused. Her curve worsened to 53 degrees and now she is having surgery in January. We can't say whether her back would have gotten to that point had she wore the brace. It may not have. Sometimes even though the brace is worn, the curve still gets worse.
Keep us posted on how she is doing.

Kim
Keri's mom

Alison
11-24-2004, 02:36 AM
I remember the number of times my Dad (who pretty mechanical and an engineeer) doctored my brace in the pinchy bit on my legs. I remember him sitting there heating it up then molding it he he. Wouldn't suggest anyone tries it :-)

Braces shouldn't hurt and be pinchy. Even though the orthotist is difficult to talk to its your right as a Mum and your daughter as patientee to get the brace adjusted as many times as it needs to so its not pinchy.

Yep the bit under the arm going up high will take some getting used to. If its still bothering your daughter after a couple of weeks, I'd suggest go back and see the orthotist, they should be able to put in some padding under the arms etc to make it more comfortable.

Cause unfortunately its difficult to fine tune the brace absolutely at the first brace adjustment, because much of it you can't fully do until you wear it in "reality real life" so it means you do often have to go back for "tune ups" :-)

Even though it may be weird to get used to, over time your daughter will but itll take a lot of persistance

Alison

tikkasmom
11-24-2004, 07:56 AM
Thank you all for your encouragement and words of experience. We saw the orthopedist yesterday. He adjusted the fit up a little to take pressure off her legs and that changed everything. He also told her if it's not working by Monday, we'll either fix it or get you a new brace. That was all she needed to hear. She wore it four hours yesterday and her goal is to get to 10 hours by Sunday. I think we can now last the two weeks until our followup appointment with the orthotist and he can tweak the brace a bit.

What a difference a day makes!

Tikka's Mom
:)

celestin1170
11-25-2004, 07:14 AM
So happy to hear that her brace is being adjusted for her. It still may need a little tweaking now and then but keep on your ortho. It's important for her to be as comfortable as possible.
Good luck, keep us posted on how she's coming along with it.

Kim
Keri's mom

tikkasmom
12-07-2004, 08:08 AM
Just to followup and for any parents and kids in the same situation.... my daugher has been wearing her TLSO brace now for two weeks. She has adjusted so well that even she is surprised. She is wearing it 23 hours a day and told me that she forgets that its on sometimes.

We saw her orthotist yesterday and he already sees slight improvement in her back and encouraged her to keep up the good work. He put in a bit of padding to do more "pushing" . She feels the extra pressure but says it's not bad.

My daughter is VERY relieved that the brace is so tolerable. We know from these forums that many kids have a rough time so we feel very blessed.

The prognosis is that she has a very high probability of NOT having surgery if she continues as she has begun. Wonderful!

Tikka's Mom

lrmb
12-07-2004, 07:41 PM
Congratulations Mom and Tikka for such a great start! ~Laura

susannajon
12-12-2004, 07:04 PM
Tikka's Mom,

I am so glad Tikka is adjusting well. Keep us up to date on how she's doing. Sounds like "so far so good"!!!!

Susanna

cutiepie2236
01-08-2005, 10:30 PM
Hey tikkas mom!!

I am 12 almost 13 years old and i just got my TLSO brace about 3 months ago. I didn't like it @ first but i am getting used to it. The armpit thing is normal but your back guy (orthotist) lol sounds very mean! Mine bugged me @ fisrt but i asked him to take down the armpit just a little bit so it didn't hurt so much and he did, try to explain to him about it and im sure he will.

Has your daughter worn her brace to school yet? I am very scared to wear mine. I am afraid people will make fun of me. I have found that it makes a great thing to joke around with though. My friends like to sit on me and play the drums! l0l well i just thought this might help you a little bit!!

sinceraly,

tatjana

tikkasmom
01-10-2005, 08:31 AM
Hi Tatjana,

Thanks for your post. My daughter (Tikka) is really getting used to her brace. She has worn it to school from the very first week she had it. It really doesn't show under her school uniform, and the edge of the brace on her back is hidden by her long hair. So, most of her classmates either don't know or just haven't mentioned it. Her best friends know, of course, and they are always supportive.

I asked my daughter if she would be embarassed by anyone noticing the brace at school. Her response was, "not really...I'd be more embarassed if I got a bigger curve because I didn't wear the brace". I think she's got her priorities straight.

Good luck to you and thanks for the encouragement.

Tikka's Mom

spincon58
02-18-2005, 10:41 PM
Hi,
My daughters first fitting is next week, and I have no idea what to expect...Reading the post I know that I should not leave the office unless it fits comfortably...I hope they are nice and supportive when go..I wonder what my daughter is feeling...she doesn't talk about it???

Alison
02-19-2005, 01:27 AM
Hi connie

I kind of write out loud (write what I'm thinking/saying to myself) so it might be a bit over the place what I write. I'm also a very practical kind of person, and kind of explain things that way too.

Your daughters probably feeling a whole range of emotions right now, from scared (about wearing a brace; will it hurt etc), nervous (what will other people think, will I look ok, will my clothes look ok) to just simply worrried and getting used to the reality of it all.

Your daughter not wanting to talk about "serious stuff" (such as getting a brace; having major surgery etc) is a completley normal, human reaction. As someone put it to me one day "its a lot easier not to talk, and try and forget about it, but it'll still knaw at your insides and'll come out sometime"

When your daughter (and yourself :-) see her brace for the first time she'll probably either laugh, get very angry or bawl her eyes out (probably the latter :-( going on my years of observations in doc's surgeries).

Take with you to the fitting "brace stuff" so you are as prepared as possible for the fitting, such as
:clothes big enough to fit over the brace,
:a sports/wireless/bralette bra (if she wants to wear a bra under her brace)
: whatever sort of undershirt she's going to wear under the brace (so you can make sure the style suits/fits ok)

As my Mum said a lot of time about my brace wearing to other people "we give her lots of support, but no mollycoddling". A lot of the success in a brace experience lies in attitude and how you go about "tackling it". If you see it as horrible and yucky, it'll be horrible and yucky; but if you approach it like "yes it's not the best thing, but its what I have to do to try and keep my back straight, so I should make the best of it" it'll stay manageable and ok. And if that's how other people perceive it too they'll probably be curious at first, but then go "oh, she wears a brace, so what", and witty comebacks also work wonders. I know this is very hard, but if at all possible, you need (yourself) to try not to cry at the fitting appointment (cry later :-(. If your daughter sees you upset, she'll become more upset herself, which'll make it all the more harder for everyone.

At the appointment, they'll put the brace on your daughter; see how it fits from a visual point of view, ask her if anything "hurts", then get her to sit (not catch the top of her legs), and then leave her in it for a littlewhile. Then they'll take it off her, go adjust it, then keep adjusting it until it's ok.

Go for something nice afterwards, whether it be ice-cream, movies, shopping. Getting the brace fitted can often be a long process and is tiring and emotionally draining for everyone.

For the first few weeks; small bribes can work wonders

Remember to build up the time on the suggested schedule and not try to go in all at once. I can't quite remember how many hours she has to wear it for, but I think a good way to tackle the hours is start the hours after school time, then to weekend during the day, then sleeping, then at school (but that's just me)

Brace clothes shopping can be a challenge, but it is possible to find clothes that look good over the brace, and some that even kind of hide it. You may have to go through many shops, but see it as excuse for a shopping marathon (what female doesn't like those). Suggested stuff (but living in Australia I do have no idea what's in fashion in America at the moment); tops/sweaters with a hood on them, the "layered look (tank top etc over the brace then a normal shirt on top), weird patterns, different necklines. Skirts are ok to find over the brace, but jeans/shorts/slacks can be a bit of a challenge. Things that stretch at the waist can work very well (but its not very fashionable.......) but I think people have found stuff (Jeans etc) in Old Navy, you may need to add a belt to pants to get them to stay up.

Getting used to the brace is definetly no picnic, and the first few weeks will be likely to be very difficult. But try and perservere and it will get better (fingers crossed) and your daughter will get used to it.

I do wish you the very best, I hope some of my suggestions will be useful. I can't begin to imagine how difficult it is for you and your daughter at the moment, but it will turn out ok. And remember there's lots of people on this board more than willing to give support, all you need to do is ask.......

Alison

cutiepie2236
02-19-2005, 10:44 AM
hey tikkasmom!!!

its tatjana again!! tell ur daughter she has the best attitude about this!!! and that i am VERY PROUD of her!! WAY TO GO TIKKA!! i have been wearing mine to school to... my friends like to punch it cuz they know it doesn't hurt me....lol....i just wear hoodies...well i am very happy for your daughter and her accomplishment(s)!! Just keep positive and everything will be alright...i don't know if you are a religious person but.... God will help her through this with as little pain as possible...

Always,

Tatjana

p.s. did the docter do anything about her armpit problem??

tikkasmom
02-19-2005, 10:45 AM
Hi Connie,
I must say the first couple of days of wearing the brace was not fun for Tikka. The brace dug into her thighs and that had to be adjusted. Fortunately, once that was done, she adapted very well. I think she was surprised mostly by the "tilt" that the brace forces you into. One side comes up under her arm and made her tilt to the side. This helps to straighten the curve, and when that happens, you stretch upwards a bit and , then, the underarm piece isn't so annoying. But, that whole process takes about 2 weeks. I often kidded her that she grew 2 inches but Tikka always says "I didn't grow... I stretched!"

During the first few days she wore the brace, she had to rest often. We went shopping for clothes in the mall and had to take many sit down breaks. A good brace makes you work hard! One side pushes you into the "relief" side where there is room to move. The stomach muscles get stretched and it was quite a workout. She needed about 1 week to build up her strength. Now, she has no issues and can do most anything in the brace with no real discomfort.

We decided to take up to two weeks to get used to wearing the brace 23/7. However, I think it actually only took her about 8 days. Now, she feels weird without it!

All the best,
Tikka's Mom

tikkasmom
02-19-2005, 11:45 AM
Hi Tatjana,

Thanks for your good thoughts. I think Tikka pm'd you already. I'm so glad to hear you're wearing the brace OK in school. It's really not so bad 'cause you can hide it pretty well, right?

Tikka does not like to tell everyone about it but her good friends all know.

It sounds like you are doing so well. Keep up the good work!

Regards,
Tikka's Mom

spincon58
02-19-2005, 01:19 PM
Hi,
Alison and Tikkas...you have no idea how you helped me...First you gave me a detailed story on how the first visit with the brace will be....If I didn't know this , I would have probally have left the office with the brace not fitting right...so now I understand that it should fit comfortable...but most most important what I learned from you guys is that I should have a better additue towards the brace..I was feeling that it's a punishment that I gave her the scoliosis....This all comes from mothers guilt.,..but reading your response makes me think in a positive way....I also had my husband read your resonses....b/c he has no idea what will happen and change in Fortunes life...I had no idea that she will need new clothes to fit over the brace....In the past I would say to Fortune not to lift b/c she has a bad back/....that was a mistake.. I will stop putting a label on her....I also now she was worried after my recovery of scoli surgery 7 months post-op, and could be feeling scared but holding it inside....
I put a smile when we have the the fitting.....b/c now I can help Fortune with this experience in a positive way...telling her she ;looks cool in it, or how this will help her spine straighten up....and she has a close friend who also is wearing a brace.....but most important ...I will look at this in a whole new light and thats the help and support of this forum!!!!!!
Thank You

tikkasmom
02-21-2005, 09:09 AM
Hi Connie,
We're all in the same boat, aren't we? Our girls need support from us and we have to let them know that they can do this. The brace is NOT punishment in any way. It's a helping hug!

Just remind your daughter that the brace takes getting used to. I did learn that it should not "hurt". But it will feel very different at first. Tikka said she felt like she was tilted to one side and thrown forward as well. When the brace forces you to stand straight, it seems very weird.

Clothes were the least of our problems (except for the $$$). It was fairly easy to find nice outfits that hid the brace and looked good too.

As far as lifting things, our doctor advised that Tikka can do anything anyone with a normal back can do. She has standard idiopathic scoliosis. In fact, I encourage her to exercise her back when she isn't wearing the brace, and we do yoga twice a week. She has abs of steel now, even without the brace! I don't know your daughter's condition, but I would check with her doctor. Exercise and muscle conditioning is beneficial for most scoliosis patients.

Kids react differently to the brace, but I'm keeping my fingers crossed for you that your girl has an easy adjustment.

All the best,
Tikka's Mom

stormeygal
02-21-2005, 10:22 PM
I personaly think that the orthotist's attitude is WAY wrong. My brace started out digging into the same places as your daughtors. I told eddie, and he trimmed under the arm, and added some padding on my hip. If your orthotist is acting that way I would be VERY concerned. I hope your daughtor's hurts are fixed.!:(

tikkasmom
02-22-2005, 09:31 AM
Thanks Stormygal,

Thanks for your support.

It's amazing how much you learn in such a short time. If I knew then what I know now, I would have insisted that the orthotist wait an hour or so for Tikka to calm down (she was crying her heart out) and for her to get a feel for what "hurt" as opposed to what "felt weird". He really didn't want to take the time, nor was he the type of guy that knew how to deal with two unhappy females. He's not a bad guy, but he just isn't a kid friendly kind of guy.

On the positive side, he did make an excellent brace and , after the tweaking, the brace is pretty comfortable to her now. In the long run, this is what counts.


Tikka's mom

spincon58
04-04-2005, 11:53 PM
Hi Tikismom..
just an update on my daughter,,..she's doing great.....the only issue is counting up the 16 hours she needs to wear it...my daughter went to see a physcial therepist to go over muscle strenthening excercises...my daughter is in very good shape ..she just turned 13 and gratuated to pointe shoes after years of ballet..her faviote is still hip hop....she is a tiny thing....we are so grateful that the curve went from a 25 to 5 degree..I wish all the girls and boys to have the same positive results.....