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New Brunswick Online Scoliosis Support Community
newbrunswickonlinescoliosissupportcommunity@groups.msn.com
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Hawkeye Babe
I first found out I had scoliosis in fifth grade. I did the whole brace thing for a while, and I totally hated it. Then my doctors told me my brace wasn't really 'doing it's job' so they decided to give me surgery. I had my surgery on November seventh of last year (2000) I was in ninth grade and fourteen years old. Anyone who has had the surgery knows how painful and rough it is, but you also know you just get through it because there is no other chocie. I was in the hospital for six days and I was sort of glad to get home. I was almost scared to leave. Once I was home, I couldn't wait to go back to school. Life was so boring for those three weeks I had to stay at home. Looking back, I'm glad I had this done. No way would I ever want to do it again, but I know my life has been improved because of it. Besides, my choir teacher is impressed with my 'unbelieveable' good posture.
I've always wanted to talk to other people who have been through this, and I'd be happy to talk to anyone~so email me at
SeaLion589@aol.com
3/26/2001
me_14
I found out that I had Scoliosis 2 years ago. I was12 years old. I am now 14 years old. Everything was fine up until October 2000. The doctor told me that my degree went up by a big amount in just 2 months. I didn't think that anything would be done about it, but i was wrong. My doctor told me that I would have to get a brace. I thought that I was the only one in the world that was going through this. I recieved my brace 2 weeks later and I don't think there was one day I wouldn't be crying. I would cry because of the pain and because I didn't understand why this was happening to me. When I went to the guidence office at school for some help on how to deal with it, they were just awsome to me. They check up on me every week, just to make sure that I am doing ok. I'm still wearing the brace, and it is very uncomfortable, but I guess it's just for the best of things. I am just worried about the summer. It might be a lil uncomfortable. My family, friends, and my boyfriend have been there for me throughout everything. I have lost a friend to me wearing the brace, but I guess that the person wasn't a good friend. I still have trouoble dealing with the fact that I can't do gym, or go swimming or anything like that, but it will be back to normal soon. Wearing a brace 23 hours a day isn't what i dreamed of, or what I wanted, but now that I think of it, I'm a bit glad that I have a brace. I've learnt to love myself and to know that brace or no brace, I'm still a human being.
4/2/2001
Taylor
hey everyone...here's my story with scoliosis, please e-mail me with any questions or comments, i'd be more than happy to talk 2 anyone. :o) i was diagnosed with scoliosis when i was 13, going into the 8th grade. by the beginning of the school year i was wearing a back brace 23 hours a day. (or was
supposed
2 be wearing it 23 hours...). my curve was 42 degrees at that time, and the doctor seemed pretty optimistic that the brace would help, as long as i wore it all the time. now 15 and in the 9th grade, i still wear the brace, and have been told that i will probably be out of it within the next 6 months. 6 months mite not seem like a very long time, but as anyone who wears a back brace knows, it is. the ultimate goal is to avoid surgery (spinal fusion), but that doesn't just magically happen - the back brace has 2 be worn in order for it 2 work. even though i haven't faced surgery or had 2 wear the back brace forever, i've been through a lot having to do with the brace, from seeing school guidance counselors to going to parties with/without the brace...and it's definitely not easy. i still look for ways to remain positive so that i can survive the next 6 months. i sing and dance, and get 2 take the back brace off for those activities, which helps and gives me time to do what i enjoy and not worry about my crooked spine. i'm convinced that there
is
a way for everyone to endure their back brace, and i think that the main key is to believe that you
can
survive and you
can
live through it. believe in yourself, even though it's not always easy. :o) feel free 2 e-mail me:
soprano1029@hotmail.com
4/8/2001
mandy
Congratulations to all of those researching sites that support the emotional and physical challenges envolved with scoliosis! Atage 14, I underwent an anterior-posterior spinal fusion from T-11 to L-4. I continued to play sports such as basketball, track, volleyball, and even boxing! While this is to encourage those that there is life after surgery, I hope it also serves as a red flag. Now, nearly 9 years later, I was diagnosed with Flatback Syndrome and am considering a very major and complicated surgery. I also have a disc that is completely degenerated just below the fusion. My B.S. in Exercise and Sports Science has helped me understand the importance of listening to your body and accepting that those of us with scoliosis are unique and prone to degenerative disc disease. While staying fit helps tremendously, keep your spine happy by treating it to low- impact activities (which can be very challenging if you want them to be) such as swimming, walking, and cycling. In my journey I would like to stress the following: 1) Surgery should always be the last option- conservative methods work and are better! 2) If surgery is needed- research! research! research! (Before my first surgery, three doctors measured my curve wrong and wanted to fuse my entire spine!) 3) Positive attitude is everything. Positive attitudes and positive visulization have even been thought to cure some patients from cancer! I know its hard to do at times, but I have realized through sites such as this one that there are many people in the same boat who understand. There really is much more to "Healthy mind, Healthy body" than one would think!
4/10/2001
MeganGallie
I was told I had scoliosis this year around January. I am 13 in 8th grade and they found it in a regular check-up. I wear a brass now because i went to specail people who have this new soft brass with straps. I can wear all sorts of clotghs but if my curve gets larger i might have to go to a hard brass. Does any one else have this soft brass? How
is a hard brass?? Im at about 20-25 degrees. If anyone wants to tlak ( i know i do) pleas email me
Gingerbaba@aol.com
!! i've just started this and i want to talk with someone my age!!!
!! - megan
5/3/2001
qtangel05
Hey* My name's Whitney.. I found out I had scoliosis when I was 13(a year and 3 months ago). My heart had been scipping beats for about a week so my mom took me to our family Dr. She found that nothing was wrong. She decided while I was there she'd go ahead and a do a physical.. When I went to bend over she saw the hump on my right side... 2 days l8er I went to go see an Orthopedic surgeon... He said surgery immediatley( I'd had x-rays the day b4 & they showed it was only 25*) So *duh* we got a 2nd opinion. The 2nd Dr. I went to is now my Dr.! He rox! Newayz...He took more xrays & Decided to watch me for a year. Well, 4months until my appointment I started having ReAlLy bad lower back pains , knee & hip prob.So we went back.. They took more X-rays...My curves was now 40 degrees.He new I'd have to have a surgery but we were gonna @least wade it out until school was over.. So 3 months l8er I went back & it was 52 this(it may be about 54 now, it progresses 2 degrees a month...). It was a deffinate i'd have to the spinal fusion( it's really scare when u actually hear your Dr. say the words!) 5 weeks have gone buy since I found out & I'm getting ready for surgery now. It's June 13( a lil 2 close 4 me right now!) I giving the blood, it's not too bad.Gone for my pre-op a few days ago. I've seen the spinal fusion on TV & it didn't look as bad as i'd thought. But nothing scared me until a nurse took me & showed me where i'd be.. It just made it seem more real. I'm a lil anxious 2 see how i'll feel after surgery.. & If any of you have any details about please e-mail*
~Whitney *
6/9/2001
nate
About a year ago I contacted you about my son, Adam ( 16 in August). He has shown no more growth. It looks like he will be fine without needing any extras or surgery. Just scared his mommy and daddy big time. I know this does not compare with the other stories posted but needed to let you, Margaret know that everything is OK. Thanks for answering a worried father. Nate Email
B4CG@aol.com
6/10/2001
doris
Hi, everyone! My name is Doris and I am mother to Robbie who is 14. He has a46 deg. curve in his upper back (T3-T7) and we are awaiting possible (most probable) surgery in Sept. or Oct. His attitude has been most positive throughout all of this, and he has been in 2 braces, neither of which has worked. We have tried many alternative therapies for his scoliosis, so if anyone has any questions about alternate choices, feel free to contact me (or preferably, him). I am trying to encourage him to get online to speak with other kids about this, and what he is going through, but not being much of a writer, he is reluctant. Maybe if he received some e-mails from some of you kids who have been through the surgery, it would help him to open up and contact some of you. His email is
yrkh8er3@aol.com
. His name is Robbie, he is home-schooled, and loves to read, work out (figure he might as well be in great shape before the surgery!), play with his pets, climb trees, swim and talk. I wish all of you brave people the best, and hope all goes well for you. Thanks! Doris
6/18/2001
mom
9/4/2001
brenmask
Hi,my name is Brenda, Mom of Katie 9.We found out at age 3 katie has congenital scoliosis,The first check-up she had, was very scarey.They told us she would need surgery,and have to wear a halo for three months! About 50 doctors got together and decided to hold off and watch her close.That was five years ago.They said it was rare to have this in your neck.She can never dive,or do any thing that can put a blow to her head.She is doing pee-wee cheerleading now, but can't be the one on top. You can't tell she has it ,unless you look close with her hair up.The Dr. told me they will worry most when she turns Ten,eleven or during her growth spurt..I hope she does not need surgery.I was wondering if the check-ups change when she gets older? She was a little shy last time.Katie wants a e-mail friend so bad .Please e-mail me and i will forward it to her. Thanks!
Brenmask@aol.com
7/30/2001
yogi
Gday,
Well, it is a cold winter night down here on this side of the world and I was clicking away searching for information about the surgery that my daughter Nicole who is 12 is going to undergo.
Nic has been wearing a brace for approximately 9 months now in the hope the 63 degree curve in her spine would correct itself. It didn't in actual fact it grew to nearly 70 degrees. The reason Iam writing this is I am so proud of the way she has worn the brace and accepted the fact that now corrective surgery is going to be the only way out. None of you guys deserve this.
Unfortunately it could mean a stay in hospital over the Xmas break, as
down here in Australia we have our summer holidays. As scoliosis is not as prevalent here any info about
the operation and recovery would be appreciated. Nicole would love to here from any of you guys and can be contacted at
ajgmp@hotmail.com
and so would I
for peace of mind.
8/3/2001
Linne
Hi , my name is Linne and I have a daughter who has scoliosis, She has the one that is shaped in the 's' shape, were first discovered it when she was 15 years old, She had to have Herrington Rods put in, I thought I was going to die, The pain that she went throw just tore out my heart, she ended up with an infection in her incesion and was sick for quite awhile, She did heal, but alwasy complained of back pain, we took her to physiotherapy and that did not help much either, So for the past 5 years her pain has intesified, She went to see a specialist who x-rayed her only to say that 'her screws ahve come loose' really no pun intented on her rods, so she now has to get them removed, She is just terrified and hopefuly this will help with her pain, but I do have a question when she gets them out will her back start going back to the way it was? If anyone has had this surgery plese could you e-mail me and let me know my address is
mendingangel@hotmail.com
thank you very much Linne
10/3/2001
val_cadden
hey! i found out that i had it in 5 th grade. i was scared at first but then i just got use to haveing it. i stop going over to friends house b/c i was embaressed by wearing those ugly brace. i have had it about 3 1/2 years and i have been throught 2 braces and nither one of them worked really well. we just now decided to have surgery and i am very scared about it. please let me know what it is like and what to exspect. thank you soo much. valerie
here is my email if oyu can tell me about it
lolliepop_7@hotmail.com
thank you again. bye bye.
11/9/2001
skh
Hi My Name is Kelli and I am 31years old, I have to have a ant/post fusion on 1-14-02, My problems began about 6 years ago after the birth of my son,I suffered in pain and visited many doctors trying to find out what was wrong with me after two years of many treatments an MRI was ran and a big fat tumor was found attached to my spinal cord, I my first had surgery on 9-12-97 to remove the tumor and they placed some hardware in my spine to replace the bone that had to removed, it was the worse thing I ever went through in my life I woke up not feeling from my waist down and I had to learn how to walk over again, since that surgery my posture has gotten worse, I have like a hump in my back and you can see the hardware under my skin, anyway I saw my Dr. on 11-20 and he told my husband and I that I needed to have the surgery that the curve in my spine had gotten worse, I 'm looking for some feedback and support for those who have had the same type of surgery and to see maybe what it is like, the Dr. said it would not be like the first one which I hope to be true, any information would be great. As I have read so many stories that have been posted it really makes me feel alot better. Thanks for listening, my e-mail address is
userjn1478@aol.com
Kelli
12/6/2001
SHERRY
i AM WRITING BECAUSE MY DAUGHTER WHO IS 12 WAS JUST DIAGNOSED WITH SCOLIOSIS WITH A 70 DEGREE CURVE. wE HAVE SEEN ONE SURGEON AND HE EXPLAINED HE COULD NOT DO THE SURGERY THERE ARE ONLY A FEW SURGEONS IN mICH WHO CAN AND ARE NEW APPT IS jAN 15. tHIS IS ON MY MIND SO MUCH i AM SO SCARED FOR MY DAUGHTER. cAN ANYONE TELL ME WHAT i SHOULD BE DOING FOR HER AND ANYTHING THAT i MAY NEED TO ASK THE dOCTOR THAT ISNT NORMALY THOUGHT OF. i FEEL SO HELPLESS. pLEASE HELP ME.
1/5/2002
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