Long Shot: Anyone have a dd who has worn a back brace for scoliosis?

[Debbie in IL]

Just found out last week that dd 13 1/2 needs to wear a back brace for scoliosis. And, we just got the call that her brace is ready to be picked up / tomorrow. This has all gone very quickly! I thought I'd post here on the off chance that anyone has any tips, hints, etc that I may not have heard of.

 

She will be wearing a Boston brace (under her arms to her hips, I think) - 23 hours a day, for at least 1 1/2 years.

 

Thanks for any help you can give!

[LG Gone Wild]

Just found out last week that dd 13 1/2 needs to wear a back brace for scoliosis. And, we just got the call that her brace is ready to be picked up / tomorrow. This has all gone very quickly! I thought I'd post here on the off chance that anyone has any tips, hints, etc that I may not have heard of.

 

She will be wearing a Boston brace (under her arms to her hips, I think) - 23 hours a day, for at least 1 1/2 years.

 

Thanks for any help you can give!

 

I wore one at around that age. It is a difficult thing to do at that age. You will have to buy new clothes to fit over the brace. It will be challenging to find clothes to fit the new shape of the brace. It's just awkward. The brace is uncomfortable. I wore a t-shirt or undershirt, then the brace, then my regular clothes. The t-shirt is to prevent chaffing and itching. When your dd takes it off, she will be sore and achy. I suggest getting into the habit of gentle stretches and cardio work just to work out the stiffness from the brace.

 

HTH

[Debbie in IL]

Thanks, LG. I appreciate your hints. We had heard about the t-shirt, and the cardio - but not about the stretching, and I think that is such a great idea. Can I ask if you were happy with the results after you were done wearing the brace? We realize that there is no guarantee that this will "fix" her curve...but I'd love to know how it worked out for you. (If that is too personal, just ignore! :)

[LG Gone Wild]

Thanks, LG. I appreciate your hints. We had heard about the t-shirt, and the cardio - but not about the stretching, and I think that is such a great idea. Can I ask if you were happy with the results after you were done wearing the brace? We realize that there is no guarantee that this will "fix" her curve...but I'd love to know how it worked out for you. (If that is too personal, just ignore! :)

 

Truly, I don't remember. It did in the beginning but I don't remember what degree I started out with and where I ended at. So I can't tell you if the effects were long lasting. I was supposed to wear it for two years. By the end of the first, I was fed up with it. My results could have been better because of that. Still, brace is soooooooo much better than an operation. It's a drag but scoliosis has health consequences that appear latter in life. Backbrace now, maybe no chronic pain later. You might have to remind your dd of that when she gets discouraged.

 

One potential side effect...even though when the brace is on, your dd will look and feel like a sexless block, the brace is like a corset. She could very well end up with a rockin' hourglass shape. I did. Only because I am short, I look a squashed version of Jessica Rabbit. Still, it is better than being a stick or a pear.

 

I don't recall from your signature if your dd is homeschooled. That might help with the experience since there is less peer pressure to look like everybody else and clearly, your dd won't be able to.

[TraceyS/FL]

My DD is in a brace, but the one she only has to wear for 8-10 hours a day at night.

 

They gave us a shirt to wear under it that was skin tight - any wrinkles will cause a sore. She is at Shriners now and they can't order the undershirts, but the guy just cuts us some body cast material (the knit stuff they put on before casting - she is skinny enough and it fits over her like a nightgown).

 

She adjusted very well to sleeping in it, i was surprised. She was prepared to have to wear a Boston if needed, but because she was in it pretty early, we were able to go in this one first. It has STOPPED her curve progression.

 

Oddly, my middle one also has scoliosis - and she actually wants a brace. Go figure. Right now, she doesn't need it....

 

:grouphug:

 

I have a couple of books that were good reads - one the girl ended up having surgery so i wouldn't start with that one. But i'll dig up the titles tonight for you.

 

Dinner is calling.

[Debbie in IL]

Funny! You are the second person in two days who has mentioned the "figure-enhancing benefits"! Perhaps that alone will make this worth it! :)

 

Dd is homeschooled, so I'm hoping that will help in terms of the adjustment. Her attitude has been great so far about getting the brace; I do think reality will sink in tomorrow, though. Thanks so much for all of your help - I really appreciate it, and will pass it on to dd.

[klmama]

No advice on the brace, but I do remember reading a Judy Blume book called Deenie about a girl who had to wear one. It was in the 1970s, so my memory of it isn't great. I think the girl hated it initially, but eventually accepted it. It does seem like she kissed a boy, but that's the only thing I remember that might be objectionable. It is Judy Blume, though, so you might want to preread it.

[TraceyS/FL]

Books (i skipped Deenie because of mature issues - my DD was 11)

 

This is the one i'd let your DD read now.

http://www.amazon.com/Theres-My-Back-S-Scoliosis/dp/096588791X/ref=pd_bbs_9?ie=UTF8&s=books&qid=1233699065&sr=8-9

 

I think this is the other one... i can't get to them till the STBXH leaves tonight.

http://www.amazon.com/Growing-Scoliosis-Young-Girls-Story/dp/0971416036/ref=sr_1_21?ie=UTF8&s=books&qid=1233700063&sr=8-21

[Debbie in IL]

Tracey, thanks so much for taking the time to comment. First, I have to say that I love how your other dd wants a brace! So sweet - and it makes me think that perhaps this won't be too bad if she wouldn't mind getting one! Your dd with the brace must have had a great attitude to have her sister feel the way she does. :)

 

I love the idea of the tight shirt (never thought I'd say that!) I wonder where I could get one? Dd is really skinny, too, so it sounds like it would work well. I'll check when she gets her brace tomorrow.

 

Good to know that your dd's brace "worked"! I love hearing success stories. And, that she had no trouble sleeping - that was something that I wondered about. I have to figure that at some point dd will be tired enough that she will fall asleep - but I can imagine it might feel pretty uncomfortable at first.

 

Thanks for getting book titles to me when you have time - I really appreciate that, and I think that would help a lot. This is going to be interesting!

[Debbie in IL]

Ah - I do remember that book! Thanks for the reminder. I appreciate it!

[Debbie in IL]

Thanks for these, Tracey - I'm off to look at them on Amazon now.

[klmama]

Ack! I think I just remembered something else from Deenie that involved the boy trying to feel her chest. It might have been another book, but I don't think so. SO, it may really not be what you want for your dd. Sorry.

[Harriet Vane]

Hi Debbie,

 

I have scoliosis, though I have never worn a brace. I have talked to others on the board about scoliosis, though I honestly don't remember if you are one of them or not.

 

My curvature is mild but it has affected my health and always will. When I was initially diagnosed the dr recommended a watch-and-see approach. I find I am really resentful of that--as I have researched and interacted with various medical professionals as an adult I have learned how truly detrimental that is.

 

Obviously you are not being passive about your daughter's care. I just want to add that I highly, highly recommend that you consider both aggressive physical therapy as well as chiropractic care. I believe firmly that your daughter's outcome will be significantly better with aggressive, targeted exercises. For someone with scoliosis, physical therapy should be viewed with the same importance as insulin for a diabetic. The brace will certainly have a good effect on straightening her spine--the exercises will aid that process and help KEEP the spine straight.

 

I do have two different friends whose kids greatly benefited from chiropractic care addressing scoliosis. One of those friends did only chiropractic care, and her daughter is now curve-free. My other friend had a more elaborate regimen because her daughter's curve was more severe--they used chiropractic care, massage, and aggressive physical therapy, with excellent results.

 

Just some thoughts--I don't know if you have explored these options or not. Best wishes for your daughter's good health.

[Debbie in IL]

Yikes! I hadn't remembered that. Thanks for the heads-up!

[Debbie in IL]

Hi, strider - wow. I hadn't even thought of pt or chiro treatment - I will definitely mention this to dd's orthopedist. When we originally asked about exercises, we were told that exercises would not help - but that was before the brace was found to be necessary. I'll definitely mention it again.

 

I have another friend who regrets not choosing treatment, as well - she has chronic back pain that is really tough. I'm sorry that you have had troubles health-wise as well. I do know this will be worth it in the long run...but it will surely be a challenge.

 

Thanks for taking the time to post. I truly appreciate your suggestions.

 

PS - are you in the Chicago area? I thought I remembered that, but I may be wrong. We live outside of Bloomington / Normal - about 2 hours south of the city.

[Holly IN]

I did for about a month. However I was an adult. The Chiropractor I had at the time hurt my back really bad. So I had to wear a brace for a month so I can heal from my injuries. (I dropped him after that) I found out by my current chiro that the way my back was shaped I shouldn't let him adjust my back the way he did. I told him how he did it. He said that it is wrong way for scholiosis. My current chiro uses the table to adjust my back not his body.

 

I highly recommend a chiropractor. However you do need to shop around for one. A friend of mine who is a chiropractor recommended my current chiro to me. I did ask her to do chiropractic care for me but she refused stating that she will hurt my back if she does it. She only does certain types of back problems. She doesn't do scoliosis period. She said it is a very delicate condition and needs a delicate and knowledgeable chiropractor. She was right on the money with this current chiropractor.

 

 

Holly

[Lisa R.]

My experiences were the same as LG Gone Wild. I needed to wear a tee shirt under the brace as mine was made of hard plastic. I also needed to get new clothes to wear over the brace. I had to wear pants with an elastic waist band and a long shirt to cover that. Also, overalls worked well because it was a wider waist. Fortunately, they were in style at the time. Perhaps the braces are made a little differently today. I don't know.

 

Sleeping was not uncomfortable. Actually, wearing it made my back feel less achy.

 

I was sent to a physical therapist and told to practice the exercises every day. When you're wearing the brace, you're not using those muscles to support yourself since the brace is holding you up. Make sense? The exercises keep those muscles in shape. I also wore mine all the time, except in the shower. Even with the exercises, by the end of a shower my back was weak from lack of use. In other words, make sure she keeps up with her exercises.

[Harriet Vane]

Hi, strider - wow. I hadn't even thought of pt or chiro treatment - I will definitely mention this to dd's orthopedist. When we originally asked about exercises, we were told that exercises would not help - but that was before the brace was found to be necessary. I'll definitely mention it again.

 

I have another friend who regrets not choosing treatment, as well - she has chronic back pain that is really tough. I'm sorry that you have had troubles health-wise as well. I do know this will be worth it in the long run...but it will surely be a challenge.

 

Thanks for taking the time to post. I truly appreciate your suggestions.

 

PS - are you in the Chicago area? I thought I remembered that, but I may be wrong. We live outside of Bloomington / Normal - about 2 hours south of the city.

 

Hi--

 

Yes, I live in Chicago. We're practically neighbors! ;)

 

A word to the wise--traditional medical doctors tend to be both under-informed about and to under-use physical therapy. The traditional medicine approach to scoliosis is watch-and-wait unless it's really bad, after which they talk about options like braces and surgery. I will be really blunt--I would not ASK about PT, I would rather INSIST upon a referral to physical therapy.

 

Frankly, I am alarmed that he would say exercises would not help--that is absolutely false. At the very least the exercises do wonderful things for pain management. I know this through many years of personal experience. I tried pain pills and found that even taking a LOT didn't stop my neck from hurting or restore my head's range of motion. On the other hand, stretches and exercises DID--my neck stopped hurting except for occasional flare-ups, and my range of motion increased significantly. Strong muscles do also prevent continued progression of the curve--simply put, stronger muscles hold everything in place better. If one of my own kids had ANY degree of curve, no matter how minimal, the very first thing I would do is start them on a rigorous physical therapy program, and they would continue exercising and stretching for as long as they are growing.

 

I also advocate chiropractics--though I came to this position with reluctance, lol. Frankly, I was very very skeptical about chiropractics and didn't consider it an option for me. I was totally convinced in the value of good physical therapy and ongoing exercise and didn't think anything more was needed. However, I had a really bad episode when my son was 1yo. I had turned over in bed to hit the alarm clock and my neck and back seized up terribly. I hadn't done physical therapy in years, and had not been disciplined about exercising through my pregnancy and the first year of ds' life. I figured I just needed to get back on track and got a referral for physical therapy.

 

The PT did help enormously, but only to a certain level. After two months of PT I began to quietly panic because I was still in pain and still hadn't restored my full range of motion in my neck. A friend suggested her chiropractor, and I went in with great suspicion. Fortunately the chiropractor was someone who could speak my language--she explained everything, answered all my questions intelligently, showed me pictures and diagrams and a skeleton model. I consented to let her touch me, and I walked out of her office feeling measurably much, much better. In fact, I felt so much better that I decided to give her recommendations a try, and continued seeing her that month in addition to continuing PT. The results were amazing, and I came to understand that chiropractics are very, very effective for my condition. That chiropractor helped me gain a better range of motion in my head/neck, helped my posture enormously, and even helped my asthma (my hunched posture exacerbated my asthma). Best of all, I didn't hurt anymore.

 

Because I have scoliosis (a chronic condition), I do see the chiropractor monthly. However, there are many people who only need chiropractic care for a specific injury--once healed, there is not a continuing need for regular visits. I have learned, over the years, that chiropractic care without physical therapy or exercising is not nearly as effective. When I am exercising and stretching the chiropractic adjustments hold better.

 

My point is that scoliosis is a body mechanics issue, and a chiropractor is uniquely trained to address that. I have seen it done successfully with two friends' kids.

 

My bottom line: No matter what else you do, please push for physical therapy as a support for what the brace is hoping to accomplish. I also recommend chiropractic care for this but because of my own, initial reluctance and suspicion I do understand that might be an intimidating option to pursue. If I had to choose I would advocate strongly for physical therapy no matter what as the more important, but I would also advise you to consider chiropractic care.

[Harriet Vane]

I should have also mentioned that if you do choose to go into physical therapy, look for a more athletic-oriented facility. I find that hospital settings and places that work with sedentary people or with the elderly just are not nearly as aggressive in their exercise prescriptions. For scoliosis you need a good muscle-building regimen for the spine.

[Amy in TX]

My younger sister wore a brace for scoliosis when we were both in high school, 25 or so years ago. She adjusted to it quickly and it was, I think, not much of an ordeal for her. In her case I think it actually helped that we were in ps, because there were several kids in our smallish school with the same type of brace. Everyone was used to seeing them and nobody thought anything of it.

 

Her curvature was pretty slight, and her outcome was good and has remained so. She did have to wear rather loose clothing. I remember being slightly jealous of her tiny waist at the end of the year! She's 43 now, has had 2 kids, and still has that tiny waist! :o)

 

I hope your dd has an easy time of it; take care!

 

Amy

[Debbie in IL]

Thanks, Lisa - looks like I'll definitely be talking to her ortho about exercises. Were you happy with the results when you got the brace off?

[Debbie in IL]

strider - thank you so much for taking the time to explain what you have learned going through this. Your experience is invaluable to me - I can only hope our family can be a help to someone else someday as well, as you have been to us.

I will definitely push for pt. We have an excellent sports medicine place right here in town; it sounds like that would be what you would advocate. I'm wondering how many times per week she would need to go - slightly overwhelmed at the moment, I think. One thing at a time, I keep telling myself.

I'm where you were, about chiropractic care. I'll have to talk more w/ dh about that one. We have heard the horror stories as well as the successes, and it is excellent to hear that you have been helped by it, as well as your friends' children. We will definitely look into this. It spooks me a little, though - I would assume that is normal? :)

At this point, I'm hoping we can actually make it in to her appt today - ds woke up w/ the stomach flu a few hours ago. Hoping dh can get home for a few hours.

 

Thanks again, neighbor :)

[Debbie in IL]

Holly - yikes. Thanks for the word of caution. I will definitely look into this very, very carefully. Thanks for taking the time to post.

[Debbie in IL]

Amy, thanks for the encouragement! I'm glad the brace worked so well for your sister. Funny about the tiny waist! I have heard that quite a few times now. I appreciate you taking the time to post.

[Virginia in Tx]

My son has been in a milwaukeebrace for 2 years - first year was 23 hours a day and now we are at 8 hours a day. His curvature has improved and hopefully we can avoid surgery. The doctor was very matter of fact in describing the surgery option as if it was as easy as fixing a broken finger - but I think the idea of putting rods in his back, scared my son enough that he doesn't complain about the brace.

[Debbie in IL]

Julie, thank you so much for linking this article. I'll print it out for dh as well - it was very helpful.

[Debbie in IL]

Dot, thanks for taking the time to post. I'm hearing so much about the importance of exercise - thanks for reinforcing that.

[Harriet Vane]

I will definitely push for pt. We have an excellent sports medicine place right here in town; it sounds like that would be what you would advocate. I'm wondering how many times per week she would need to go - slightly overwhelmed at the moment, I think. One thing at a time, I keep telling myself.

 

 

I'm where you were, about chiropractic care. I'll have to talk more w/ dh about that one. We have heard the horror stories as well as the successes, and it is excellent to hear that you have been helped by it, as well as your friends' children. We will definitely look into this. It spooks me a little, though - I would assume that is normal? :)

 

 

Yes, I would recommend the sports medicine place. Another poster mentioned swimming as well. You should expect a PT to offer an exercise regimen that targets the spine, trunk, and upper body. Swimming in addition to this is excellent. For myself, I have found that a combination of strength-training (weights and such) with a more aerobic component as well (arm bike, swimming, paddling canoe-style [i do this sitting on a rubber ball with a stretchy thingey in the door]) is most effective. The aerobic exercise seems to make the muscle tension melt away, which results in less pain and greater mobility/range of motion.

 

You should expect the first month with a PT to be intense. Your dd will likely need to go in 2-3 times per week. You will find, though, by mid-month that you are seeing progress. Since scoliosis is an ongoing problem, you should work with the PT to develop an in-home exercise regimen so that your dd can wean off of needing to be directly IN the facility. One real concern, however, is that patients often do not follow through with their exercises when not in the PT facility--you should have a plan in place ahead of time for strict accountability to the exercise regimen. You will not regret it--I promise you will find that exercise and stretching helps enormously. Knowing how poor patient follow-through is at home, most PTs push to keep the patient coming to the facility. However, I have successfully negotiated in the past to do a monthly check-in/evaluation kind of thing.

 

As for chiropractic care, yes, I think many people are leery of it. I was blessed in that my first chiropractor was so very, very competent. She is now teaching full-time or I would still be with her. After her I had two chiropractors of whom I have a very poor opinion. One was very, very dependent upon me to tell him where it hurt (as opposed to being able to feel the trouble spots with his fingers), and his adjustments didn't seem to help. My next one after that was VERY good at what he did, but kind of arrogant--he really thought that chiro was all anyone needed and pooh-poohed the effectiveness of PT. At that point I was experienced enough and confident enough to just ignore his opinions and gladly receive his chiropractic adjustments. Unfortunately he died. My next chiropractor is the second one of whom I have a very poor opinion--he felt that everyone, regardless of pain, should be getting weekly adjustments. When he adjusted me he did barely anything. After two visits I decided he was approaching me as a source of income rather than as a patient and I left his practice.

 

I am now with a chiropractor whom I adore. She reminds me of my first chiropractor--explains a lot, answers all my questions, doesn't insist that everyone has to go in for a lot of adjustments all the time. I have chronic problems because of my scoliosis and because I have bone spurs that create nerve problems and muscle tension, so I go in once a month. However, my son had a head injury--the chiropractor adjusted him twice and he was done. Another time my son slept on a moldy mattress for two weeks (we didn't know it was like that). The mold created some real breathing and congestion problems for him, which then gave him a neck ache. He was actually walking around with one shoulder higher than the other, poor little guy, and there was a real concern that he had the beginnings of scoliosis. We treated his breathing and congestion with nasal spray and took him to the chiropractor for his neck pain. She adjusted him several times over the course of a month but once he was healed has not adjusted him since.

 

My point is this: A good chiropractor will provide some immediate relief in terms of reduced pain and better mobility. I have felt measurably much better after a good adjustment and have measurable improvement in my ability to turn my head. A good chiropractor will understand that healthy spines do not need constant adjustment. A good chiropractor will be able to feel the trouble spots with their fingers--you'll hear them say, "It hurts here, doesn't it?" as they probe. A good chiropractor can show you in an x-ray where the trouble is, and they can also show you on subsequent x-rays how there has been improvement. A good chiropractor understands there is a relationship between the bony structure and the soft tissue, and values physical therapy.

 

The rough thing for you is that a kid with scoliosis will need a lot of adjustments over a long period of time--for someone who is suspicious of chiropractic care this will feel overwhelming and scary.

 

You're not that far from Chicago. If at some point you'd like to just consult with my chiropractor to get an idea of how your daughter's case would be ideally handled I'll gladly pass on her contact information. Another idea that occurs to me is you might be able to talk to my former chiropractor, who is presently teaching at the chiropractic college in Elmhurst. My thought is that talking to someone without the pressure of paying for treatment might help you evaluate this and also give you some tools for finding a good chiropractor in your own area.

 

Whether or not you get chiropractic care, though, I am confident PT will help quite a lot. Best wishes to you and your daughter.

[Kanga]

Quick thoughts (I'm about to run out the door)

 

My dd wore a Boston brace 23 hours a day for about 2 years and then was slowly weaned off of it.

 

We bought extra thin canisoles (7 ) from jockey to wear under the brace to make it more comfortable.

 

We went shopping the weekend after getting the brace to buy her loose clothes. She was skinny so with loose clothes it was not noticeable to the casual observer that she was wearing a brace. People who bumped into her or gave her a pat on the back would express shock when they touched something hard, because they did not realize she was wearing a brace.

 

The brace made her look like she weighed the right amount for her height and finally allowed her to stop wearing kids extra slim.

 

She wasn't particularly upset about the brace, so we didn't read any books about wearing a brace - why put the thoughts in her head that weren't there, IYKWIM?

 

My ds set the tone, when she came out with her new brace. He tapped her stomached and said, "cool, an exoskeleton" and that was her brace's nickname for the duration.

 

She did strengthening exercises (abdominal and back) as well as stretching each day before showers. She also continued with horse riding and swimming (she took her brace off right before each activity). The period where she was weaned off the brace was really valuable for building those muscles back up slowly.

 

I thought she would have trouble sleeping because I have always called her my "princess pea" but she adapted really fast.

 

She still has a slight curve, but it is not noticeable and does not cause her any discomfort or troubles. I kept her braces (she had to get a bigger one) for her presidential library.

[kewb]

I wore a brace from 13-16. I couldn't tell you what it was called but it sounds like the Boston Brace. I wore an undershirt under the brace. In the beginning I remember being sweaty and itchy. It was not long before I was used to it. The only horrible memory that I recall was my 9th grade English teacher noticing it during class and proceeding to ask me what felt like 5 gazillion questions about it. I wanted the floor to open up and swallow me. Because what 13 year old awkward girl doesn't mind being grilled about her new brace.

 

It worked and I have excellent posture.

 

I also remember having to do lots and lots of sit ups to strengthen the muscles that support the spine.

[jenadina]

Frankly, I am alarmed that he would say exercises would not help--that is absolutely false. At the very least the exercises do wonderful things for pain management. I know this through many years of personal experience. I tried pain pills and found that even taking a LOT didn't stop my neck from hurting or restore my head's range of motion. On the other hand, stretches and exercises DID--my neck stopped hurting except for occasional flare-ups, and my range of motion increased significantly. Strong muscles do also prevent continued progression of the curve--simply put, stronger muscles hold everything in place better. If one of my own kids had ANY degree of curve, no matter how minimal, the very first thing I would do is start them on a rigorous physical therapy program, and they would continue exercising and stretching for as long as they are growing.

 

 

:iagree: 100%. I have scoliosis too, and I have found that T-Tapping really, really helps...I can actually see a visible change in my waist curves...Instead of looking like |(, I look closer to )(. It stops the pain, too. I have noticed though, that when I get lax with my exercise routine, my back AND hip start to hurt and my curved side becomes even more pronounced. Exercise doesn't seem to reverse my twisted rib-cage, but my hope is that it will stop progression. I already can't wear underwire bras because of my twisted ribs.

 

FWIW, I've also tried yoga, and that made me hurt MORE...but probably because I was following tapes at home rather than going to a well-informed yoga instructor.

 

ETA: As for shirts to put under her brace, old navy might be a good place to check. They have some called "perfect fit" or something like that, which fit snugly without being uncomfortable. You can cut off the top and sleeves, if you wanted to, and maybe wear it inside out so the seams aren't against her skin.

Edited February 4, 2009 by jenadina