PDA

View Full Version : New Boston Brace



t nizzle
01-21-2009, 07:25 PM
Hey I'm 15. I just got my boston bace about a week ago, and so far It hasn't been fun. I can barely breathe, I'm having chest pains, my ribs hurt, and it's just plain tough to deal with!! I have a 45 degree curve up near my shoulder blades and a 25 near my hips. The doctor wanted to do surgery, but I'm a full time dancer, so he wanted to leave it until it's absolutely necessary. Can anyone just share some stories or give some support? Give me some pointers on how to sit down or sleep comfortably? anything? It feels like no one else understands how hard this is. :(

-- <3 :)

HeatherM
01-21-2009, 08:48 PM
Hey~ Let me just start off with saying that I am so sorry you are going through this. It is really tough. I had the Milwaukee brace from 2nd grade-6th grade and stopped wearing it because nobody understood. I ended up having surgery in 7th grade (my curves doubled in 1 year from not wearing the brace), which was now 14 years ago, I am 26.

I am not totally familiar with the brace you have but the bottom of it is the same as mine was. I wish I could tell you a comfortable way to sit right now, but there really aren't any. Eventually though, your body will get more used to the brace and adjust so that you really don't even notice it. If you kind of sit leaning forward a bit, I do know that helps. It at least stops the brace from pushing up in the back.

Your hips and ribs and everything will get better as the brace does its job and starts to move things the way they should be. You might start to notice that your skin gets rubbed raw a bit, especially anywhere around the edges of the brace. You can get this stuff called "Mole Skin" or something similar that is like a bandage. We used to stick it right onto the brace where it was rubbing and that really helped. Also, they used to say that you should use rubbing alcohol on your skin to help calus it up where the edges of the brace were...I am not gonna lie to you. It really hurts but it really works. It will help to build a tough layer so your skin doesn't get irritated as much. It eventually goes away when you stop, but takes a few months (so its not perminent).

I really feel for you. When I first got my brace I couldn't eat, sit, lay down or do anything. Trust me though, it will get easier. I know the surgery part seems scary too, but it was the best thing I have ever done and 14 years later, I don't have any problems to report.

t nizzle
01-21-2009, 09:39 PM
its so great to hear from someone that has gone through the same thing. All I've been hearing is "I wish I could help you but I can't". I know they're all trying to help. But it gets annoying:(

swimmergirlsmom
01-21-2009, 10:02 PM
Hang in there, T Nizzle. My daughter started wearing her brace last February and I remember her in tears the first few days. But after a few weeks, her body adjusted and she got used to it. My daughter's largest curve was a 48 degree right thoracic curve (near the shoulder blades, as you mentioned) too. She finds that sleeping on her left side helps, maybe because then gravity is pulling her thoracic curve in the same way that the brace is pushing it? My daughter is also 15 and is a competitive swimmer. If you would like to contact her, send me a PM and I'll give you her contact info.

HeatherM
01-22-2009, 07:42 AM
I know! Everyone tries to help and comfort you and tell you how sorry they are but until they have gone through it, they really don't know. I am sure that people are just trying to be there for you and let you know they care and support you.

How many hours a day do you have to wear it?

I had 3 curves and while I was in the brace they remained the same, top 30s, middle 40s, bottom 20s. When I went in for my surgery my top was 60s, middle 80s, and bottom 50s. I Know it really stinks to wear it but they do work.

Forgot to mention, I always slept on my back. I had to "poles" that went along my whole back and one on the front and a hoop around my neck. Ugh thinking about it makes me feel like I am wearing it again.

Hang in there!

t nizzle
01-22-2009, 04:40 PM
Right now I only have to wear it 12 hours a day. They told me to do 20 hours at first, but after about 2 days of wearing the brace my back started bruising and fluid was building up in my back between my ribs. So for now we're sticking with 12 hours a day! So I've just been wearing it at home and when I sleep. I wore it to school today. It went surprisingly well. I had to take it off after about 4 hours because sitting and carrying my backpack became a problem. But I'm pretty proud of myself !!!:D

HeatherM
01-23-2009, 07:01 AM
Yeah! That is so great that you wore it to school! How did it go? 4 hours at a time is so great! Did they say you should try to do 12 hours in a row or can you break it up?

Are you getting a lot of questions about it? After my surgery people were asking me so many questions it was crazy! I ended up doing a presentation about my surgery to a bunch of different health classes to make up for not being in school for over a month. It actually worked out great because then nobody asked me about it! LOL!

t nizzle
01-23-2009, 02:10 PM
it went pretty well. It's just the little things I didn't think of that were hard. Like sitting in my brace in the chair then having to bend over to get a pencil from my backpack. I didn't even think of those things!! I've been getting SO many questions. Mostly people asking if they can punch me in the stomach lol. I consider myself pretty lucky to be in the boston brace though. I looked up pictures of the Milwaukee brace and it looks HORRIBLE!! I would go insane.

starbinky
01-23-2009, 08:02 PM
I will also soon be in a brace as of this tuesday. Uh-oh im really scared i need help on whay to wear anyone got tips?????\:eek:



36 degree top
28 degree lower
scared to death
help!!!!!!!!!!!!!!!!

t nizzle
01-23-2009, 08:35 PM
HEY!!! I got mine 13 days ago!! Ask me about anything!!! It would be great to talk about some stuff. I'll send you a personal message!

HeatherM
01-24-2009, 08:04 AM
Oh I was going to tell you too... I know I was reading on here that people are wearing bodysuits under their brace. I am not sure what you are wearing, but I always wore a wife beater tank top. I would get a smaller one than I should have. The material was thin so it didn't bunch up and I didn't have to take everything off to go to the bathroom.

Star-
What kind of brace are you getting? Everything will be ok! Just give the brace and your body time to adjust to each other. If you have any questions, let me know!

t nizzle
01-24-2009, 06:47 PM
Haha i'm proud of this thread. It's full of love now.

Heather-- THANKS!! We kept getting shirts that were too big because they're longer. But they bunch up which is really uncomfortable. I'll try for the wife beater thing.

Star--I have a boston brace, so if you get one of those, I'm becoming an expert at what to do with a new one:D

asccbodypro
01-24-2009, 07:35 PM
Hey I'm 15. I just got my boston bace about a week ago, and so far It hasn't been fun. I can barely breathe, I'm having chest pains, my ribs hurt, and it's just plain tough to deal with!! I have a 45 degree curve up near my shoulder blades and a 25 near my hips. The doctor wanted to do surgery, but I'm a full time dancer, so he wanted to leave it until it's absolutely necessary. Can anyone just share some stories or give some support? Give me some pointers on how to sit down or sleep comfortably? anything? It feels like no one else understands how hard this is. :(

-- <3 :)

t nizzle,

I came across your message and had to respond. I am 36 years old but wore the boston brace when I was approx. 11-13. I had an "S" curve and can't remember exactly what my curve measurements were but the doctors wanted to do surgery. We lived in New Hampshire and I was seen at Boston's Children's Hospital 3 hours away. Back than it was a much more invasive surgery and technology couldn't even compare to today. Also, I would have been in a body cast for a very long time. My parents decided to go with the brace and I wanted to die! I absolutely hated it. I had to be in it for 23 hours/day. My skin use to blister and after the first year I use to take it off and hide it. Because you can hide it under your cloths my parents never checked.....at first. They eventually caught on and they would say "you will regret this someday!" That didn't mean much to me back than. I can promise you it's all I hear in my head now. For the past five years I have been having a great deal of problems. I was a competitive body builder and 3 weeks before a show I herniated a disc. Come to find out it was because of my scoliosis and not from any injury. That was just the beginning of the problems. I know have a 50* lumbar curve and all the disc's have herniated. There are other problems as well, but I won't bore you with the details. I will say this, try and stay strong and hang in there. I often wonder if I had worn my brace the right way would I be where I am now. I read your other post about going to a rehab facility. I can completely understand you not wanting to go. I know how hard it is to look down the road to the future but try and do all you can to take care of your curve now. That way you can look back and say you did all that you could do rather than question if you should have done things better. I am planning on having surgery toward the end of March or beginning of April and can tell you I am not looking forward to it. Knowing what I know now I would have kept that god awful brace on every minute of the day! Good luck and remember you are stronger than you think you are!

Cat Eyes
01-24-2009, 08:32 PM
Hey, my name is Katelyn and I am 13 years old. I just got my boston brace 2 weeks ago, and I can relate to you totally. I still have the troubles of not breathing, chrushing ribs, and all the other symtoms. Tonight is my first night wearing it to bed and i am soo scared, for lack of a better word. I wish you luck.
I have been told that it gets better, but i am just waiting for that day to come. I hope you have beter luck in your brace then I have had so far. I wish you the very best with everything.
Try not to tear your brace to sreads like I did. Believe me it doesn't work, it's to hard. When I get out of my brace for good, my parents and I are gonna burn it in a fire that we have everynight in our back yard. I can't wait for that day.
wit loads of concern, and hope
Cat Eyes
Katelyn

t nizzle
01-24-2009, 08:49 PM
yeah I don't plan on not wearing the brace as much as i should. But it does reeeeeally suck.

cat eyes:: the brace actually isn't that tough to sleep in! I thought it would be, but it isn't. Once you find a comfy position to stay in, it's fine. The only really annoying thing is when you have to change positions, because you're all stiff and such. And also, if you're a belly sleeper (like me) you're going to have to train yourself not to sleep on your stomach. It's just really awkward. hard feeling to describe, but I definitely don't like it lol.

HeatherM
01-25-2009, 04:33 PM
Katelyn~You made me laugh when you said you wanted to burn your brace! I too thought that I would burn mine, but I didn't...I guess I just never got around to it but its something to shoot for this summer.

T Nizzle~ The shirts I am talking about are in the men's section. They are a really thin tank top and form fitting. We tried regular T-shirts too but they would get all bunched up.

Acssbodypro~ What kind of surgery are you having done? Are you having fusion on all of your curves or just the herniated ones? The surgery is painful but you get really good drugs and before long you feel great!


When I was wearing my brace I hated it! I went as far as leaving it on a bus bench at the State Fair in hopes that someone would throw it away, it would get hit by a car, stolen, etc...needless to say that didn't happen but I did get in a lot of trouble!

starbinky
01-30-2009, 08:17 PM
Hi everyone,
I am already friends with t nizzle and HeatherM but anyone else that would like to talk im here and I might need some advice so anybody thats going through this or has been through this i could use some advice because i have not gotten my brace yet but im kind of getting really scared and I even did a powerpoint presentation on scoliosis but i still need more info on clothes and thanks t nizzle for the advice you already gave!!:D

Rosebud9
02-25-2009, 06:18 PM
Hi i am 9 years old i am getting a boston brace soon. i will feel your pain soon. Maybe we can chat when i get my brace.

txmarinemom
02-25-2009, 07:58 PM
... also, if you're a belly sleeper (like me) you're going to have to train yourself not to sleep on your stomach. It's just really awkward. hard feeling to describe, but I definitely don't like it lol.

t nizzle ...

I wore a Boston for about 3 years, and you do get used to it. As far as stomach sleeping, try it with extra pillows under your hips: That's how I did it until I got used to the brace and didn't need them anymore ;-).

For that matter, I learned to sleep on my stomach again after surgery the very same way (for you pre-ops posting here ... it's a good trick to file away).

Regards,
Pam