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Thread: I Am A Boy With Scoliosis.. i hate it so much... i don't know what to do anymore :(

  1. #16
    Join Date
    Aug 2005
    Location
    England
    Posts
    58
    but what if your scolisosis IS noticeable like mine? whether i bend over or not. and sometimes it doesn't even matter whether other ppl notice it or not, but its the fact that's its all i see when i look in the mirror, i notice it all the time!

  2. #17
    Join Date
    Feb 2005
    Location
    Missouri
    Posts
    4
    I was diagnosed in the 7th grade and immediately sent to an Army hospital. (My dad was a retired staff sergeant so the Army would pay for everything) We had to take a bus for three hours to Ft. Leonard Wood then take an Air-Evac plane to Fitzsimmons, Colorado. There the doctors decided to "invent" a new brace-combination Milwaukee and I don't know what. It was huge, bulky and very hot. It covered right under my neck with huge bars, chin plate, and casting down over my hips practically riding into my upper thighs. Thank God I was skinny then! Anyway, I decided early on that this wasn't going to slow me down. I entered a beauty pageant at school (I did get to take my brace off for that) and was the first incoming freshman to ever win. That helped my confidence level. I tried out for the Flag Corps and made it. I loved it and even helped with choregraphy. Granted, there were those that were mean, but I chose to ignore it. That was their problem and I wasn't going to let it be mine. I even tried ice skating and skidded on my back like a turtle on it's shell. I laughed my --- off. Every three months I had to fly to Fitzsimmons and stay a week at that hospital. I missed school events and had lots of make up work but enjoyed the daily outings my mom and I took around Denver. (you had a bracelet, stayed in the hospital, but basically had outside privileges unless they had something scheduled, which wasn't alot of the time) If you don't let it, it WON"T rule your life. I now carry 30 pounds too much and am trying to diet and exercise because my back feels so much better w/out the weight and I hate being a size 12; regardless if I've yo-yo'd to a size 6 or 12 my husband lets me know he thinks I'm sexy. There will be a girl who has a good heart and will like/love you with or without that brace. Even at 38 I still have my days where I see girls in bikinis and with beautiful straight spines and even curved waists (something I never had even at my skinniest!) and wish that my back wasn't messed up. Then I have to remember to thank God that I'm not in a wheelchair, or don't have severe burns or left without a limb or something like that. Take care of yourself and keep your muscles strong and limber. The better you feel, the more that will be reflected in your personality and people won't care as much as you think they will.

    Sorry, I rattled, but I remembered thinking that way and being soooo depressed when first diagnosed. I wanted to let you know it will get better. On a different note...by my junior year I decided the curves stopped, the brace isn't doing a damn thing and I threw it in the trash. I had my mom take me to a chiropractor and through adjustments and spinal traction he actually improved my curve a few degrees. That had NEVER happened. Remember, there are always alternative treatments. Massages and hot tubs are awesome for your back and weight lifting and stretching can do lots for your posture and self esteem. I wish you a world of luck and most of all health and happiness!!!

  3. #18
    Join Date
    Jul 2005
    Posts
    14
    Hey there guys and gals, I too know what you are going through. Now 26 and have been dealing with the problem for the last 10+ years. Was always a fat kid growing up and got picked on throughout grade school for that, as I got older I lost weight and my "hump" became apparent. I developed kyphoscoliosis, 50 degress forward, ie. hump, and 15 to the right, which I only found out a few months ago after ignoring things for so long. Being a big guy my spine took quite a beating carrying the weight ontop of the scoliosis. My shoulders and hips are both off, right side both lower. Right leg and right arms both seem a bit longer then the left. Having a very noticably lower right shoulder is just one aspect, when I lean over or bend all the way over a very very very visible hump shows. Once I lost the weight the kids had something else to pick on me about...woohoo. Around 17 or so I finally said screw it!! Got confident in who I am and those few problems are what makes me me...been good ever since Only suggestion to you younger folk is definately get it treated while its still just a small problem. People may look and say things but who cares. I never got it treated and neither did my folks and I'm kicking myself for it now. Terrible pain with every step, lower back and shoulder pain all day everyday and some good shooting pains down my left leg. Basically saying, wear the brace and be proud of the way you look, make the problem who you are and not some terrible thing that has happened to you. People dont care about those things, I may see it and feel bad but your friends will see the real you and not the brace or the hump...dont let it run your life!!! Just take care of it, a few years of little stupid ass kids saying things or a lifetime of pain...its your call.

    By the way, I do agree with the above post. I too do alot of weightlifting and alot of stretching to keep everything loose. Muscles tightness plays a huge role in the pain! Definately can say feeling better about yourself show through to everyone around you...and that is the person they are seeing!!
    Last edited by DiakosUCF; 09-11-2005 at 12:06 AM.

  4. #19
    Join Date
    Jun 2005
    Location
    Staten Island New York
    Posts
    298

    Amin and every other boy

    Theres another great site called Spinekids.com!
    Theres heaps of boys and girls there with scoli! i <3 that place and u shud too! check it out

  5. #20
    Join Date
    Apr 2005
    Location
    the uk, between london and the south coast
    Posts
    142

    i know it's tough...

    ...there is a positive way of viewing all of this.

    i'm 18, i live in the UK and i'm 10 weeks post op from anterior surgery. health is such a sensitive issue, especially when it affects the way we look, but i think that in the politest sense, a reality check is in order.

    i know exactly how some of you feel: i was diagnosed at 14 and it felt like the world had collapsed on my head. however, none of my friends knew i had scoliosis until i told them (granted i didn't have to wear my brace to school) but looking back at photos of myself 4 years ago, i had a noticeable lateral shift, plus no waist on my left hand side due to my curvature (lumbar curve was about 45* at diagnosis and around 50* immediately before surgery)

    personal history aside (just to prove that this isn't me telling you to buck your ideas up, i do know it's a difficult concept to get your head around initially) but it gets easier, plus when you think about it, how much of your life does high school take up? alright it's five days a week now and that's your current life, but ultimately, what people think of you at school doesn't last forever. the bigger portion of your life is what you choose to make it in future. the career you can have, the people you surround yourself with and the vast majority of your life taking place outside of school

    what i'm saying is, although it's tough now and seems neverending, having a brace to contain or correct a curve at this stage may be thoroughly worth it. any opportunity to avoid surgery should in my opinion be cherished (and some of you have recognised this) so i think that with the support of your families, close friends and communities online, you can work your way through your teenage years, persevere with treatment and come out of the experience stronger and with your life ahead of you which you can enjoy

    so please, try and look at this experience positively (which unfortunately it's taken me a long time to do) and remember that it's a short term tribulation for what is hopefully a long term gain...and i hope what i've said isn't misconstrued as an attack, i'm just trying to relate my experience and help others find their way through

  6. #21
    Join Date
    Sep 2005
    Location
    North Carolina!!
    Posts
    14
    like most of these guys have said, try to have a big happy positive outlook on it, even though it may seem SOOOO unfair and u feel so different. i got a boston brace in february, and i just recently got out of it because it didnt work for me, so now in november im having surgey. i have a really big rib hump on my right side, and whenever i used look into the mirror i'd get a sick feeling. i felt really deformed and stupid looking. but now it really dosnt bother me that much, cause if sumone has a problem with the way i look, they can go ahead and laugh. i really do not care. spinekids.com helped me realize that (a great website!).
    i really hope you feel better about all this, and that everything goes super good 4 u!
    §BrIaNn§

  7. #22
    Join Date
    Sep 2005
    Location
    Fayetteville Arkansas
    Posts
    1

    Arrow 20 y/o here to help!

    My name is Gina and I have just joined this forum... I've never posted here before. I am 20 years old and I was diagnosed with scoliosis at age 11. I had an S curve in my spine, 64 degrees to the left and 39 degrees on the lower spine to the right. I had a "rib hump"- the hump resulting from my spine pushing my rib cage backwards. The doctors told me that if I didn't have surgery, I could ultimately become crippled or die from the chronic pneumonia that I was experiencing due to my lung position.

    I had a major 12 hour surgery done by Dr. Richard McCarthy out of Little Rock, Arkansas, while I was in grade 6. (Some of you may have seen the show "Extreme Surgery" on the Discovery Channel- that was him). I had 2 Herrington rods placed in my spine, and I am fused from the C3 in the neck to the L2 in the lower back. I spent a week in the hospital and it was about a month before I could go back to school full days.

    I was just reading through some of your posts and noticed the fear and apprehension. I just wanted to say: Please, dont worry! Scoliosis may bother you now, but it is not the be and end all. I have led a full and awesome life and am now in university studying to be a nurse and in a wonderful relationship with someone who has asked me to marry him- rods or not! I have had some back pain, but it has never been strong enough to take over my spirit. If I can do nothing else on this forum, I just wanted to write my story in for support. I didn't have much when I was going through this, and wanted to lend a helping hand. Now, all of my friends see my scar and they compliment me on my bravery... in a way I feel as if this experience shaped me.. literally! When the doctor straightened me out, I went from a height of 5'1'' to 5'4''! I have been able to play some sports and even be on my high school pom squad.

    I know my life living with scoliosis is a lot easier than for some of you, but I too have experienced tons of pain. Before my surgery, there wasn't a night or day that I could go through without excrutiating pain. I went to school and was made fun of constantly... especially if anyone saw the scar on my back and around my chest wall. I was so upset about it for such a long time, but I realized that life is precious and I was just thankful to come off the surgery table. I just wanted to offer my support and praise to all of you who are being so brave not only to go through this, but to reach out to others who are also suffering- it helps!!

    Good luck and God Bless....
    Gina

  8. #23
    Join Date
    Sep 2005
    Location
    England
    Posts
    6

    Thumbs up I Know

    Hey I know how you feel!!

    I hate having scoliosis. I have a back brace AND I'm having surgery! My surgery is in Nov/Dec...we thought it would be in June so I couldn't do things liek the Spanish Exchange and the School Play because my surgery might happen at that time.

    I've learnt to live with it...it's not the end of the world no matter how bad it feels..you won't always have it! And I love it when people try to hit me in the stomach and they injure their hand because they hit the brace!!!

  9. #24
    Join Date
    Apr 2006
    Location
    Southwest Florida
    Posts
    111

    Wink I know how u feel

    hey
    im a 12 and a half year old girl and was diagnosed at 11 and a half i half had 2 braces and have a boston right now till im about next summer i will prabably need the surgury even after bracing. i want the sugury but im scared
    Veronika

    35-40T
    55L

    P.S. hpe ur doing better

  10. #25
    Join Date
    Jul 2006
    Posts
    11
    your not alone. A lot of people feel this way but you shouldnt fear surgery. A 22/23 degree curve is hardly anything. And since your in 10th grade it shouldnt worsen because within the next couple of years you will fully mature (as in your bones and stuff) and it will stop growing. Once your at that magical age, it will only worsen if it gets around 45 degrees, which i highly doubt would happen.

    It seems like its your mind noticing the curve. Try pretending you dont have scoliosis for a little while, and youll realize after a while that its not as physically noticable. And trust me, the only one that notices it is

    YOU.


    finally, i know it sucks living with it and stuff, but in later years youll realize that its not really making your life miserable, its just how you handle it. After my surgery, i found inside of me that scoliosis isnt like haveing a giant zit on your forehead that everyone notices, or like haveing bad headlice that you dont want to tell a soul about (great ex. huh? ). Its just a condition. Its not like having cancer, or AIDS, or having a brain tumor that keeps you on the edge all the time. Theres worse in life.

    Dont let it control you, dont let it control your mind. It may take some time, but youll find later that you will be soooo much more comfortable with it, and much more open.


    okay, enough words of wisdom from me but i hope that does help

  11. #26
    Join Date
    Jul 2005
    Posts
    14
    Well here's my story and am hoping it helps. I am 27 years old and have kyphoscoliosis. Meaning I have a significant hump in my back along with the scoliosis caused from having Schuererman's disease. I only wished that I was diagnosed at a young age and giving the chance to wear a brace to correct thing but nothing was ever done about my problem until I was 24 so the damage had been done.

    Growing up I had always been the fat kid in school so I got picked on quite a bit. The Schuerermans didnt kick in till highschool and the problem with being fat is that spinal problems like that are hard to detect. So I went through school as the fat kid with the big hump...didnt make things any better. Made sitting at desks uncomfortable, unable to put my back flat against the chair and still cant to this day.

    Only thing you have to do is take a look inside yourself and overcome it all. Make friends with those that are good enough to be your friends. Its all about personality and self confidence. After highschool came college and I loved it. Good friends and amazing times, that whole personality counts thing does indeed go far with the ladies, remember that guys!!

    I was tired of being the fat kid and lost a good 75 pounds, 320 down to 245, have since put on quite a bit of muscle and am now at 260. One advantage of being a big guy is that the curve is not as noticable and of course there is all the healthy stuff that goes with working out.

    Finally diagnosed with the kyphoscoliosis at 24 after I graduated, got a job, got insurance and decided to do something about the constant intense pain I was having! My curve has increased from 50 degrees back then to 70 now and am in need of surgery but still debating it.

    In the end I have a good job, great woman, good friends and living life with a very crooked painful spine and, from what they tell me, about three inches shorter than I could be!! But who cares...its all good!!

    Cant let this problem run your life! What doesnt kill us makes us stronger! Pain just lets your know youre still alive! Its all mind over matter! Laughter is the best medicine! That's all the sayings I got but you get the point. Goodnight

  12. #27
    Join Date
    Jun 2006
    Posts
    4

    my 17 yr old son

    My 17 yr old son knows how you feel. He had surgery 2 years ago. He is getting ready to have surgery again in September. He feels the same way you do. Chad's mom.

  13. #28
    Join Date
    Aug 2009
    Location
    Fort McMurray Alberta Canada
    Posts
    21
    I am a mom & I have to say you kids are breaking my heart - my little boy is going to be 11 in Feb & his scoliosis has been severe & noticable ever since he started school at 4 yrs old - he is special needs -he has Smith Magenis Syndrome & wore a full upper body brace for his scoliosis for 3 years straight - his classmates called it his chest armor LOL (it didn't help so we stopped) - I feel especially sad because he does not know to have these feeling you kids have -but now I sit & think about how others may have looked at my son as a handicapped freak (I think that is what one of you called it) well he is not - yes he is special needs/handicapped & yes he has scoliosis, but his friends at school think he is the coolest little guy going - even the jr & high school kids still remember him & acknowledge him - you are only as happy & beautiful as you want to be - your friends will still be your friends if you let them but you have to love yourself first, don't be afraid to talk about your situation - you may be surprised how you may help someone else... sorry for the rant... you are beautiful ---
    Ben should be having surgery in the spring 2010 -- I do hope you all do okay!!! Nancy

  14. #29
    Join Date
    Sep 2006
    Location
    Milwaukee, WI
    Posts
    58

    Cool Moral Support

    Hey Everyone!
    I totally know what you all are going through! I was diagnosed at age 11 and braced at age 12. I wore a brace for over 5 years, and let me say its not easy. Scoliosis sucks. Plain and simple. One thing I think really really helped me was support groups through my hospital. Most hospitals offer groups that meet and its great to talk to other patients face to face. This site and spinekids.com are great resources as well, but nothing can beat the face to face discussions you can have. As far as keeping your mind of scoliosis, I know its hard. Especially when braced. But an extra-curricular is a great thing. I was a coxswain for a rowing team (i steer the boat and give orders to the rowers). It was a great way for me to do a sport without harming my back. If you're under 5'2'', I'd definitely see if there is a crew team in your area. Coxing is a great thing for scoliosis patient (and what teenage girl doesn't like having 8 boys under her control??!!). And for you guys, there are female boats too! I am a huge advocate for finding something to do outside of school. Friends are so important and they make everything easier! Hope everything goes well for all you girls and guys!
    Hey, so I'm Rebecca, I'm 20 and I wore a Boston Brace for one year, and then a Cheneau brace for 5+ years. The Cheneau changed my life. I now am out of brace full time!!!! Its amazing. For all my scoli-girls (and guys of course) hang in there - the day you get your brace off is the best feeling ever. All the years of wearing it won't matter when that day comes. amo vobis!

    "DUX FEMINA FACTI (The leader of the deed was a WOMAN!)"
    -Virgel

  15. #30
    Join Date
    Sep 2009
    Location
    San Jose, CA
    Posts
    487
    You think you have it bad at 22 degrees? I'm sorry to say this, but get over it. It is the truth, don't just keep thinking about this scoliosis and how it is ruining your life, you're only a kid and you have your whole entire life ahead of you. What you're saying isn't a big deal imo, yes, you have scoliosis and yes you are unlucky, but there plenty of others who are much worse off than you.

    For the record, I am a 19 year old male. I had a giant growth spurt at the age of 16.5. I was 5'7 and within 1 year I jumped up to 6'1-6'2. I was extremely skinny and that is when I noticed my scoliosis. I didn't think it was the end of the world, I didn't hate myself and keep complaining. I went to the doctor and figured out what I needed to do. My first doctor told me it was 15* and It was no big deal. I was busting my ASS at the gym daily and eating over 4000 Calories a day to get in shape and gain muscle because I didn't like how skinny I was. By the time I turned 18-19 I was 6'4 and 193 lbs. I felt my rib cage sticking out from my lower right back getting worse monthly. Turns out my first xray which the doctor thought it was 15* was 40*. And when I went to get another xray at 19, It was 53*.

    So imagine this, I'm in your position, only 10x worse. I didn't get the chance to wear a brace. I am already ridiculously tall at 6'4 and I don't need any more height from my scoliosis. I don't have another choice except for surgery on my 53* LUMBAR curve. And I am in pain 24/7, I can't walk for over 10 minutes or sit for over 10 minutes without my back throbbing. It always feels so tight/tense, if I bend over, I feel like my spine is going to snap because it is so tight. AND to top it all off, all the months of hard work in the gym gaining my weight will be lost in recovery after my surgery which is in 12 days.

    But am I hear yelling at myself or getting mad over why I had to have scoliosis and not just a normal spine? No, it's not going to help anything when you beat yourself up like that, just accept what is wrong and fix it the best you can. Not everyone is perfect.

    Again, you have your WHOLE life ahead of you, just hope you don't need surgery and it stops progressing, but if you do end up having surgery, it's 100% ok, PLENTY of teenagers get this surgery and it is fine. No big deal. I hope you learn from my post and understand that scoliosis, which sucks, is still manageable and you can get over it. I wish you luck and I hope you enjoy life.

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