My DD 11 yo in Boston Brace for scoliosis? Update 12-15-20

I wore a Boston brace for a couple of years. It is tough at first. I remember feeling out of breath, especially when sitting or after big meals. Is she wearing a cloth tube or a t-shirt under the brace? That helps keep skin irritation down. I also asked the person who made the brace to cut the edges below my hips higher because the length of the brace was getting in the way of riding my bike. It takes awhile to get used to sleeping in it too.

It does get a little easier, if that helps. I wore lots of baggy sweaters and sweatshirts. My closest friends knew and I even got to the point where I was comfortable enough to take my brace off in the locker room for PE. I used my once-a-day free hour so I could at least play in PE.

Really, it's the last thing a tween/teen wants to wear and be different. It's better than having back issues as an adult, but that isn't always relevant to kids. Good luck and tell your daughter I totally understand.

I wore a Boston brace from the age of 6-12 then I had a spinal fusion at 13 and had to wear the Milwaukee brace for about 10 months. I wore the Boston brace about 22 hours a day, it only came off for bathing and just a break for about an hour after school.
I pretty much grew up with it, so it wasn’t like there was an adjustment for me, it was just part of my normal life. Fortunately this was the late 70s and 80s so baggy and boxy clothes kept the Boston brace pretty well covered. I don’t think most kids could tell. Kids in my class knew, but I was honestly never teased about it. It got me out of certain things in PE so I milked that all I could in 5th and 6th grade.
The post surgery Milwaukee brace was obviously very noticeable, but again, no one ever teased me about it. That was when I was in 8th grade. It was honestly when I was shopping and stuff the grown ups who would stare. When I got it off I didn’t tell anyone and my best friend spent over an hour with me before school and didn’t even notice it was gone.

I agree about tshirts or tube tops underneath the brace. The tshirts were more effective but obviously bulky, so I wore tube tops during the day and tshirts when I got homes. I think my mom stitched a simple tube of stretchy fabric so it would be long enough as whatever tube tops one bought in the 70s were pretty short.

I could play soccer in my, do the monkey bars and parallel bars and ride my bike. Swimming is supposed to be helpful but since I had to wear mine so much and so young I never really got swimming lessons.

I don’t recall having to sleep a certain way but I do know that I sometimes use a pillow between my knees if my back is bothering me. Does your daughter have PT? I had PT as part of my treatment, you should ask them about sleeping.

Tell your daughter there are parts of it that suck but the alternatives are horrifying and it really isn’t much different then wearing glasses or braces (all which I had to do and were MUCH worse then the brace). God, I was a pitiful thing at the age of 10! Glasses, braces and a back brace.

I don’t remember when I was young what the progression was, I just know I went from 24 to 48 in less then a year and we decided then to do surgery -I was 12 when the decision was made.  I was given the option of waiting until I was 16 or doing it when I was 13.  My parents left that up to me.  They were starting to do the surgery where I wouldn’t have to wear the Milwaukee brace for so long, but since it was new my doctor wasn’t willing to let me be a guinea pig and would only do the internal fusion I think it is called.  He did say that if we waited the 4 years there was a chance the surgery wouldn’t be so risky and I wouldn’t have to wear the Milwaukee brace. I didn’t want to wait and even at 12 I knew I would not want to be 16 and having surgery and possibly wear the brace, so I opted to have surgery at 13.  

By the time the did surgery my curve was 72.  So it went from 24-72 in about 2.5 years.  I needed the fusion because it was clear I wasn’t getting better from the brace and I most likely would have ended up a hunchback with a collapsed lung.  

My quality of life is great, 35 years post surgery.  I very, very rarely tweak my back where I have to take one muscle relaxer for a day but I can count on one hand how many times that has happened.  I am not the most flexible being, but I can walk for miles and miles, play soccer, ride a bike, snowshoe, etc.  High impact activities would likely aggravate my back just because I don’t absorb shock well, but running and such are not things I would like to do anyway.  I am perfectly happy with hiking, biking, stuff like that.  

I have known two other people similar to my age that had the surgery and you would never know for either of them.  Their quality of life is great as well.

I personally would prepare your daughter that she might have to have surgery, but obviously the brace is her best bet to avoid it.  Obviously, of surgery is in the cards I would recommend sooner rather then later.  I don’t see any benefit in delaying the inevitable myself.  

What does the doctor say about how long she might have to wear this?  Do you know at what degree they do surgery?  I don’t remember that.  Is it over 30?  

I am perfectly willing to answer any questions you have and if there is something I don’t know I can ask my mom.  I honestly don’t have anything negative to say about my experience, well, the surgery sucked and being in the hospital 10 days was no fun, but it is just a blip in my life now.  What I remember is getting out of PE, having an extra elective in school, getting new clothes for when the brace came off (-Guess jeans- woo-hoo) and my friends being excited for me. 2 years of teeth braces were WAY worse then 7 years of the back brace.

The spandex option sounds good! I had these ribbed cotton tubes that they cut from a big roll (not finished on the edges). They were thin and worked well. The t-shirts I referred to would be like the cotton camis we have today. The straps bugged me, so I cut them off. Essentially, they became tubes as well. I think I'm a side sleeper today because of wearing my brace. Back and stomach sleeping were uncomfortable because of the shape of the brace. I wore mine 23 hours a day and I have no back problems at age 56.

Thank goodness we had Jr. High, so elementary school ran until 6th grade and I got braces off and contacts that year.  So Jr. High was just the Milwaukee brace and kids were more sympathetic then mean.  

My niece had to do this. She was a great kid, but at the time she had to wear it (12 or 13), she was super hormonal and my sister was also terrified of telling her one year (alas, it ended up being a few more months than that).

I suggest you tell her it will be longer than you think, just in case. Then tell her that it pure and simply sucks and you will buy her whatever she wants within reason. Do that. It seriously sucks. Ask her how long she is going to complain about it and come to a reasonable amount of time for you to listen. I know this sounds silly, but that really helped both my sister and niece.

I can tell you two things: my niece got through it and she looks great now. And my aunt did not believe in regular medicine and didn't get it for my cousin. She's in her 30s now and had her first operation when she was in her late teens and her second about 10 years ago. She said she has never - never in her whole life - been in so much pain as the 2nd surgery. She couldn't do many things for about 6 mos to one year. She is a kind person and a caring person, but she has a resentment of her parents that is pretty big and I don't blame her. She also said she would never have the surgery again, regardless, because it's not worth it.

Be empathetic. Ask your DD what she wants and then just do it as long as she stays in the brace. It sucks.

When I was 13 I wore a pretty horrible back brace for a year. It went all the way up to my neck. Picture Joan Cusack in 16 Candles...yep, that was me! I had/have Kyphosis. The brace did fix my spine curve enough to avoid surgery, so apparently it was worth it.
She will get through it, I assure you.

ETA: I hadn’t thought about this in years, but now that I’m thinking about it, I do kind of remember them taking it in stages. Initially they didn’t know how long I would be wearing it, and we had to go in every three or four months for a recheck.

Also a sidenote: I went to Catholic school through eighth grade, got the brace summer before 9th. Had to go to the junior high for ninth grade… all new kids, who I had not seen since kindergarten…with a back brace. It was pretty traumatic, honestly. Definitely made it difficult to make new friends, especially when I was terribly shy to begin with. So if I survived that experience, your daughter WILL survive this!! Having the support and encouragement of my parents and siblings with everything, so just be there for her and she will do great!

That is awful, I am so sorry.  Mine was pretty bad when I had surgery, that is one of the reasons my doctor wasn’t willing to let me be a guinea pig for the other surgery.   I asked my mom my surgery was the posterior surgery where they did bone grafts between the vertebrae.   Apparently the do surgery if the curve is 40 or above.  Mine was 48 when it was decided I needed it, but was 72 when it was done.  We can’t remember what it is now, but it is under 20.  There were a few kids who saw the other doctor at my doctor’s clinic that had to have the surgery redone because they didn’t do the one I did, they also didn’t have to wear the Milwaukee brace after the first surgery.  I don’t regret for one second what I went through.  I am sorry for your cousin.  

Lots of girls are diagnosed as teens.  I don’t know if it comes from growing like they used to say or if it just isn’t diagnosed, but it is kind of unusual for it to be like mine was.  Most of the people that have it as young as I was are diagnosed at birth because it is caused by an actual deformity in the spine.  My bones are appropriately shaped, but my mom noticed my shoulders where uneven because she used to make my dresses.  She found it when I was just 5.  

I am sorry your daughter is looking at surgery, but I think the posterior surgery I had is done without the brace now.    People that had it before me were in body casts for a year!  I feel like I got off lucky.  

I think you posted before?  Does she see someone who specializes in scoliosis?  That was all my doctor did.   He and his staff were wonderful.  

I think the surgery outcomes probably depend on the surgery and when they were done, honestly.  I think when I had mine they were really gung ho onfinding new treatments and there were all sorts of different surgeries they were trying.  They also did surgeries on kids that were prepuberty which is probably a huge mistake since they are not done growing.    They did mine where the kids didn’t wear a brace, they did one where the rods grew, they did ones that required two surgeries, they did some without the bone grafting.  

I imagine now techniques are much better and much more stable.  Listen to the options, take notes and time to make the decision.  

I honestly don’t know anyone who has had problems and I imagine more people that you know had the surgery then you are even aware of.  People that mention it are probably the people who had issues.  I pretty much don’t mention it unless someone mentions that they had scoliosis or brings it up themselves. 

That is great news!!! Good lord how I remember the fittings. They were by far the worst part. Glad you daughter got a good adjustment and hope the positive progress continues!

I never wore a brace for mine. I did have to go on muscle relaxers and hated it.

I think my brother had to wear a brace for his spinal problems. I don't ask her much because she gets upset still. (He passed away 40 years ago and she blamed herself for a long time).

Yes, it wasn’t so bad when I was little, it was when I started growing that it had to be adjusted a lot because the part the pushed wasn’t lined up right.  I remember one spot that was particularly pushy on the left side that was the most bothersome for me.  

I am glad she has a good team, I liked all my doctors and my main doctor’s nurse a lot and that made it much easier, because I saw them a heck of a lot.