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Janetisawesome
12-20-2003, 08:08 PM
I'm 12 years old and in 7th grade.I just got my brace today.It's just sitting on my couch, not on me, and I feel misreable. I don't want to wear it (who does?) and I cry alot. I cry all the time. I wish I was free. I want to go dancing in the streets,climb the tallest tree, and take a gymnastics class. Play basketball, and soccer, and all these sports that before I used to hate but that I now long to play. Im scared, really scared. And I do care what people think.:( .I feel trapped. Just trapped. In my own little plastic cage that I will soon have to wear 23 hours a day. Sometimes I get angry at God, but I know that's just stupid and I should stop. It's scary. I told the people in my cooking group, and they started laughing. They asked if I would get deformed if I didn't do anything and I said I guess, and they twisted themselves up pretending to be a deformed Janet (me). I told my friends and they just interupt me and talk about other things. I feel so alone, and I need to talk to someone who understands.Click here to e-mail me (shutuporlisten@aol.com)

Nancy
12-22-2003, 11:08 AM
I'm very sorry you are having a difficult time. I have two children who have undergone bracing treatment. The best advice I can give you is that you can only do your best. Try to focus on the positive things in your life. Remember that this is not a life threatening illness and that in the end you will be okay. There are many good treatments available for you. I'm very sorry though that you are suffering now. I hope you can fine a way to adjust to the brace. Maybe you can try wearing in loosely for a while, and then slowly over a period of time try making it more snug.

Good luck!

Janetisawesome
12-22-2003, 12:29 PM
Thank you for your advice Nancy. I'm not that sad anymore, it's just that the first day I got my brace only negative thoughts came to mind. I'll try wearing it loosely like you said, but either way I find it really hard to breathe and it hurts on my hips and stomache. Is it supposed to hurt right there? :confused:. Ok, once again thanks alot!!!!!!

:D :p ;) :) :cool:

Nancy
12-23-2003, 08:59 AM
Hi Janet,

No, it is never supposed to hurt. The orthotist who made the brace can adjust it at no charge. All adjustment visits are free. Some children find that once they get used to the brace, they prefer to have it on. That never happened for my children, unfortunately.

You are brave to continue to try to adjust to the brace. My children have had a total of five brace so far, and I can tell you that it will get much easier for you as time goes by.

Good luck and keep in touch.

Nancy

Joe O'Brien
12-23-2003, 10:12 PM
Janet you really are awesome!

Your description of how you are feeling with your new brace is incredibly real and speaks for hundreds of other people like yourself.

Hang in there. Despite the fact that getting around with a brace can really stink; and you have every right to feel the way you do; we know that you have at least a 50/50 chance to keep your scoliosis from getting bigger. The brace does not work unless you wear it, but as Nancy said you should also ask your parents to make sure you work together with your orthotist and doctor to make it as comfortable as possible. It may be uncomfortable, but it should not be painful.

Congratulations to you for your ability to express yourself so well, and for your willingness to share yourself with others.

Please let me know if we can help you in any way.
:)

isaacschicky
12-26-2003, 10:15 AM
I have had my brace for about 2 years. It isn't fair to us but its something we have to live with. I am obviously used to my brace now and honestly, when i have it off i feel like a noodle. Or after a long period of time my back does hurt. So once u get used to it then its just gravy. (lol) So just wear it and u will soon get used to it. And remember, what doesn't kill ya will make ya stronger. And believe me this will make u a stronger person. Most people would not be able to go through what we are going through. And remember u are not alone, u can talk to me about anything!!

-Hannah 13 IN

AngelP
12-26-2003, 10:40 PM
Janet,
Hang in there! I started wearing a brace when I was in 8th grade. I remember how difficult it was and I was also very sad. It will take some getting use to, but it shouldn't be painful. Also, from what I remember, if you have red spots that won't go away after you take off your brace, you probably need to have your brace adjusted.

As far as sports, don't let it stop you from being active. It is actually very good for you. I was in my brace 23 hrs a day, but my dr gave me the permission to be in gymnastics. I had to be very strict about being in my brace all the time with the exception of showering.

The brace should slow down or stop your progression. It will really help. My curvature started at 32 degrees and remained the same for the entire time I was braced. It has since gotten worse as an adult, but you by looking at me you would not know that I my curvature is so bad. The drs all say it is due to the fact that I was braced. It was so worth it.

Hang in there and don't let this stop you from doing anything possible. It will make you a stronger person and so many people will see what an amazing person you are.

Take care!

Angel

isaacschicky
12-27-2003, 04:10 PM
Hi my name is Hannah. I also have a brace. My aunt Kristi just got the surgery this summer. She wore a brace when she was my age, but one of those that went up around ur neck!! Her curve did start getting really bad as she grew older. She had 3 curves, Top-23,Middle-63,Bottom-43. So obviously she needed surgery bad! Well when i was diagnosed with it she thought that maybe she should get checked. She also found out how much her back had curved and also that the spine and rib cage were starting to affect her lungs and other organs. It was a big health risk. She also has had 2 kids and carrying them constantly had an impact on her back. Its amazing how well the surgery did. She showed me a before and after x-ray and it was really neat to see. But i hope i don't have to get the surgery! Do u think u will have to get the surgery? Do u have kids? whats ur curve today? WEll get back to me on here or e-mail me.

cheerbootyshaker@yahoo.com Thanks lots!!

-Hannah 13 IN

AngelP
12-28-2003, 01:18 PM
Hannah,

I wore a Milwaukee brace for a few years also like your aunt did. Then they changed me to another brace similiar to the Boston Brace. I was thrilled! Like I said my curvature remained at 32 degrees throughout the time I was braced. It has gradually increased and my main curve (in the middle) is 56 degrees. They just recently started measuring my top and bottom curve and they are both about 30-31 degrees. It looks like a backwards "S".

Many of the drs have said the my curvature should not progress very much after I finish growing. It was increasing on average of 1/2 - 1 degree a year. I am now 35 yrs old and my curve progressed 6 degrees this year. I also have a neurological condition and this may be a contributing factor to my curve progressing. So I will be having surgery in the near future. My back really started hurting me this year and it hurts more when I breathe.

I do have children. I have a daughter that is 10 yrs old and triplet boys that are 4 yrs old. My daughter is adopted we not blessed to have her as an infant. When I was pregnant with the boys I was on bedrest for 3 months. Being that I couldn't carry 3 at once I really didn't carry them around like most infants. We just did things sitting down. It was interesting that my curvature didn't progress anymore being pregnant with the triplets. I'm sure that it helped that I wasn't upright all the time and on bedrest. They were also 3 months premature so I didn't really get too much bigger than a singleton pregnancy.

I'm sure your doctors will watch you closely. I do know that being braced will help tremendously and reduce the risk of having to have surgery at a later date. By looking at me most people can't realize that my spine is so curved. I'm convinced that my brace in this aspect, as many with the curvature I have, looked much more deformed.

Did your aunt have a long recovery? I'd love to hear about her experience. Good luck and let me know if you have any more questions.

Angel

ladyliz
01-26-2004, 01:59 PM
hey, i can totally understand where u r coming from, i am getting my brace soon, i will pratically do anything to get out of wearing it, i 've seen it before, and it's not the thing i am interested in sspending 2 years of my life in, if u want to talk about our common issuses, or anyoneelse for that matter, plez email me. ~Liz Hanson

Janetisawesome
01-27-2004, 07:16 PM
Liz,

I would really like 2 call u, but I don't think we live in the same state, and im not allowed to make long distance calls. hmmmmm...... well, actually I dunno. I live in california, where do u live? If u live in California, then I can call u. Well, since it's about scoliosis, I bet I could.


:D



Hope we can talk

~~~~~~~Janet~~~~~~~~~:p :rolleyes: :cool: :D :)

Ciera
07-16-2004, 02:58 PM
You can still take you're brace off during sports and stuff thow.
Ciera,