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Thread: New member

  1. #1
    Join Date
    Jun 2011
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    58

    New member

    Hi. I'm new. And a little nervous. I first found this board a few years ago but was hesitant to join. I always wanted to discuss my scoliosis and kyphosis with someone else but felt afraid, embarrassed. Still do.

    Well just wanted to introduce myself. I hope over time it will get easier to discuss. I have lots of questions.

    Thank you.

  2. #2
    Join Date
    May 2008
    Location
    reno,nevada
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    3,534
    So shy,

    We are all in the same boat here and you found the right place! Ask anything you want.

    We are glad you posted!
    Welcome
    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  3. #3
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Hi shy...

    You've posted in the "Parents and Family Members" forum. There are forums for both children who are patients and adults who are patients. I'd like to move your thread to the appropriate forum. How old are you?

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  4. #4
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
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    Hello so shy, and welcome! You'll find we're all happy to talk about scoliosis here, it's a big part of our lives too. There are lots of knowledgeable and experienced people who can often answer your questions and offer advice. I hope you'll feel comfortable here.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  5. #5
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    Quote Originally Posted by LindaRacine View Post
    Hi shy...

    You've posted in the "Parents and Family Members" forum. There are forums for both children who are patients and adults who are patients. I'd like to move your thread to the appropriate forum. How old are you?

    --Linda

    Being new, I wasn't sure which forum I was supposed to introduce myself. I'm in my early 40s.

  6. #6
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    Jun 2011
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    Quote Originally Posted by JenniferG View Post
    Hello so shy, and welcome! You'll find we're all happy to talk about scoliosis here, it's a big part of our lives too. There are lots of knowledgeable and experienced people who can often answer your questions and offer advice. I hope you'll feel comfortable here.
    Thank you, Jennifer.

    I have -- and have had -- lots of questions. (medical, psychological, etc.)

    With time I hope I'll feel comfortable enough to ask them.

    And that I suppose raises the first question ... do others find it difficult to talk about their condition? I've always been embarrassed about even bringing it up. I hope what I'm saying makes sense. It's an emotional thing for starters. Low self-esteem.

  7. #7
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    I think we're all different. I ignored my scoliosis until it was hurting enough that I couldn't ignore it any longer. It never bothered me until then. My curve was 68 degrees at time of surgery but until my 50s, I don't think it was noticeable, (perhaps I was deluding myself) but it progressed rapidly after 50, as seems to happen a lot from my reading, here and elsewhere.

    But others have felt differently about their scoliosis.

    I don't think I realised how bad it was until I was straightened up. The difference was amazing.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  8. #8
    Join Date
    May 2009
    Posts
    3,745
    hi so_ shy...
    and welcome...

    no need for embarrassment here...the forum is just for those with scoliosis, & the problems it brings....so this is the one place you can feel comfortable... discussing, asking questions, sharing...
    you may find answers to your questions, as well as support & understanding from some really nice people...


    jess
    Last edited by jrnyc; 06-14-2011 at 04:31 AM. Reason: splg

  9. #9
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160

    Welcome

    Hello so-shy,

    welcome to the forum, and I am glad that you have found the courage to post here. We are all living with scoliosis, so you do not need to feel embarassed or hesitate to ask any question. I know I have always hated how my crooked back looked, and I never much liked talking about my scoliosis with others. But here, we are all friendly and we understand how it is to live with scoliosis. And everything is entirely anonymous.

    Please feel free to ask any question you want. We are all here to support each other. I look forward to hearing more from you.

    Take care,
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  10. #10
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    Jun 2011
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    Quote Originally Posted by leahdragonfly View Post
    Hello so-shy,

    welcome to the forum, and I am glad that you have found the courage to post here. We are all living with scoliosis, so you do not need to feel embarassed or hesitate to ask any question. I know I have always hated how my crooked back looked, and I never much liked talking about my scoliosis with others. But here, we are all friendly and we understand how it is to live with scoliosis. And everything is entirely anonymous.

    Please feel free to ask any question you want. We are all here to support each other. I look forward to hearing more from you.

    Take care,

    First, should I post all my questions in this thread? Or when I want to address new subject matter should I start a new one. I have a few questions, and they deal with different aspects of my condition (some are medical, some psychological, and so on).

    Second, thank you for the warm welcome. I know "everything is entirely anonymous" (or is supposed to be) but I've just become so fearful. I have always been and still am so uncomfortable, even afraid to talk about how I feel about having these conditions (kyphosis and scoliosis). I have had terrible experiences with being made fun of how I walk, sit, or just look. Then the few times I've tried to say how much I hate having these conditions, I've been scolded for complaining about expressing my feelings. So I feel trapped. On one hand I have the "there he goes walking/sitting funny again" and comments much worse. And on the other hand, I can't tell anyone how lousy I feel about myself because I'll get the old stop feeling sorry for yourself, or it's no big deal, live with it, or others have it worse, or other's have bigger problems, real problems, etc. And of course then I feel guilty, so i have to just keep it to myself. Hate myself and keep it to myself.

    The last time I told anyone how lousy I feel about myself because of these conditions (scoliosis & kyphosis) was 11 years ago. I gave up talking to anyone about it in the real world. So now I've come to the "virtual" world where I'm hoping I can express this emotional agony. Even with the notion of anonymity, it's still scary (as I said I found this site a couple of years ago, and kept putting off joining, that's how fearful I am. Still fearful someone in the real world will see this, find out it's me, and scold me for my genuine feelings, for my self-loathing, telling me things like "stop feeling sorry for yourself" or "other people have bigger problems, or real problems.")

    I think I'm repeating myself so I'll stop at this point. I have to admit, I'm very nervous typing this. Guilt. I shouldn't be complaining. Yet, I just hate holding it in because the hurt is so real.


    (if this helps any, just to let you know, when I was in my early twenties and had stopped growing, I was told my scoliosis was neither mild nor severe, but in between. I guess bad enough to look "abnormal" but not bad enough to warrant surgery. And as I said, I also have kyphosis.)
    Last edited by so_shy; 06-13-2011 at 12:13 PM.

  11. #11
    Join Date
    Mar 2008
    Location
    New Bern, NC
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    1,445
    Hi So-shy,
    I'm so glad you finally jumped in to this Forum. Not a single one of us will laugh at you or say that you shouldn't feel one way or another. This is the best place in the world to express your feelings and ask any and all questions. There are so many helpful and wise people on this Forum, so welcome aboard and let it all out. You will feel so much better once you realize you are not alone.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  12. #12
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    I don't know who said those things to make you feel that way but if it is your parents, I hope that one day you can stop blaming yourself for their blatant incompetence. This isn't your fault.

    Cut yourself some slack. You are among friends who care.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  13. #13
    Join Date
    Jun 2011
    Posts
    58

    Unhappy

    Quote Originally Posted by loves to skate View Post
    Hi So-shy,
    I'm so glad you finally jumped in to this Forum. Not a single one of us will laugh at you or say that you shouldn't feel one way or another. This is the best place in the world to express your feelings and ask any and all questions. There are so many helpful and wise people on this Forum, so welcome aboard and let it all out. You will feel so much better once you realize you are not alone.
    Sally
    Almost everything I've seen written about scoliosis deals with the physical. Degree of the curve, names for the different curves (scoliosis, lordosis, kyphosis), and so on and so on. But what about the psychological?

    Does anyone else find it "emotionally crippling", as in destroying their self-esteem, causing deep depression, and making them practically socially dysfunctional?

  14. #14
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Hi Shy....

    It's really not uncommon for people with scoliosis to feel the way you do. It seems especially that way for males for some reason. Perhaps as females, we cut ourselves some slack in terms of the shape of our backs, because we're so often insecure, especially about body issues. Unfortunately, our insecurities probably only serves to drive a wedge between us and other people.

    The one thing I can tell you as an older individual is that you'll eventually come to know that the physical self is so much less important than the emotional self. I can guarantee that the people who like you, do not care about the shape of your back. I have very few friends who are anywhere near perfect, but I never spend any time thinking about their imperfections. If strangers find you odd looking, I would try not obsessing about it. You'll never see most of them again. And, for those who you will continue to see, you can choose to make them know the good things about you.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  15. #15
    Join Date
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    Quote Originally Posted by LindaRacine View Post
    Hi Shy....

    It's really not uncommon for people with scoliosis to feel the way you do. It seems especially that way for males for some reason. Perhaps as females, we cut ourselves some slack in terms of the shape of our backs, because we're so often insecure, especially about body issues. Unfortunately, our insecurities probably only serves to drive a wedge between us and other people.

    The one thing I can tell you as an older individual is that you'll eventually come to know that the physical self is so much less important than the emotional self. I can guarantee that the people who like you, do not care about the shape of your back. I have very few friends who are anywhere near perfect, but I never spend any time thinking about their imperfections. If strangers find you odd looking, I would try not obsessing about it. You'll never see most of them again. And, for those who you will continue to see, you can choose to make them know the good things about you.

    Regards,
    Linda

    I know that how I physically look "shouldn't" matter, I sooooo know that. Yet, I have never been able to FEEL that. I just emotionally have been totally unable to not feel at peace with any of this. In fact, I get sick over it, as in looking in the mirror and being nauseated, or being outside and twitching all the time and even shaking because I just feel like it's practically impossible to conceal, the whole clothes wearing problem. And then when the comments, and sometimes nasty, mean remarks I overhear, well then I just break-out in physical symptoms too embarrassing to describe. The most I'll say is I become a twitching, shaking, excessively perspiring-dripping WET MESS. I mean I have so much tension even typing this now, and doing it early in the morning, while no one is up so I can't be caught writing about my problem, and looking over my shoulder, ready at any second should someone come in to quickly click off this site until it's safe again to write.

    I'm amazed at how others with scoliosis survive and even thrive, especially those whose scoliosis is WORSE than mine.

    I just feel like a monster at times.

    When I was in school, the few "friends" I supposedly had, some who in all other respects were actually nice people, still would make the hurtful comments that just sucked the life out of me. How many times I had to hear (and still do but this is going back to high school) "There goes (my name) sitting funny" and "there goes (my name) walking funny" and also the times other students would imitate the way I walked or sat or looked, where they would actually hunch over their shoulders and mimic. I've even had insensitive doctors. My own orthopedic doctor would say when he walked into the examining room, "Ah yes, hunchback." As a teenager and young adult I told my psychiatrist about it, that the ortho doctor would use that term and he was in disbelief. And of course going to a swimming pool, well that's out, I last went swimming almost two decades ago. The clothes things is one major major major nightmare, but swimming, being totally exposed, that's out forever after what I heard people say the last time I went swimming 18 years ago.

    I find it all very draining. To be honest, I have no life. I would love to just be able to get dressed, look fairly normal in a shirt, and just be able to walk the earth with some sense of calm.

    I shouldn't be feeling this way, that's what the voice of logic or sanity is saying in my brain. But that doesn't stop the reality of how bad I jut feel about myself.

    Thank you for listening. Letting me vent.

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