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so_shy
06-11-2011, 12:32 PM
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.

titaniumed
06-11-2011, 01:18 PM
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

LindaRacine
06-11-2011, 02:09 PM
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

JenniferG
06-11-2011, 06:15 PM
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.

so_shy
06-11-2011, 11:08 PM
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.

so_shy
06-11-2011, 11:19 PM
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.

JenniferG
06-12-2011, 01:14 AM
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.

jrnyc
06-12-2011, 05:19 AM
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

leahdragonfly
06-12-2011, 11:16 AM
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,

so_shy
06-13-2011, 01:00 PM
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.)

loves to skate
06-13-2011, 02:53 PM
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

Pooka1
06-13-2011, 05:34 PM
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.

so_shy
06-13-2011, 11:03 PM
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?

LindaRacine
06-14-2011, 12:39 AM
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

so_shy
06-14-2011, 09:33 AM
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.

jrnyc
06-14-2011, 10:20 AM
hey shy
i do not know what "ortho" said that to you...
personally, i would like to wring his neck! if he has an MD, he certainly doesn't deserve it!

i don't know how large your curves are...
people tell me they don't usually notice mine, unless i am having a really painful day, and my upper curve is 42, lower 61...with hypokyphosis, degenerative disc disease, listhesis, spinal stenosis, spinal arthritis, etc etc...the whole nine yards, so to speak...

i would guess that your curves do not look as awful as you think they do, but i also know it matters how one perceives oneself...and it is clear that the way you perceive yourself is..can i say...torturing you....

a good scoliosis surgeon, needed whether you will have surgery or not, would never call you any names other than "patient"....no good doctor should!

again, welcome...you have come to the right place....

jess

LindaRacine
06-14-2011, 11:31 AM
Hi Shy...

Working on this issue with a psychologist or psychiatrist might be really helpful. Don't let yourself remain in such pain.

Regards,
Linda

so_shy
06-14-2011, 12:09 PM
re i do not know what "ortho" said that to you...

This was 25 years ago. He was a foreign doctor. He had a thick accent. The only thing I could think of was maybe it was a cultural thing, that he was trained or got his degree in another country where such sensitivity wasn't taught or it was just assumed a doctor would know to have.

I did go 10 years later to another one, and he was a very nice man but he said there was nothing that could be done. His words were something to the effect, "Yes, it looks bad, the disfiguring stance, but your curves aren't at the levels that demand surgery, and trust me, you wouldn't want the surgery."

And then I saw one more about a year later, and he was nice too, but I almost freaked when I started asking if there was any kind of "cosmetic surgery" available and he said "Hey, is this an emotional thing." Those were his exact words, "Hey, is this an emotional thing." There I'm not paraphrasing, and I remember those exact words because I immediately felt the old stop feeling bad about having this condition response I had gotten from the few non-medical people I had ever tried to discuss my pain, my emotional pain, low-esteem issues with. It felt like that scolding I had written about earlier that I so fear, being scolded about feeling horrible about what I look like.

As to how large my curves are, I don't remember the numbers. I can only vaguely remember back in the early days, as a teen, being with the doctor in the office with my parents and I think, but I could be wrong, I think heard numbers like 17 and 23 but it's a stretch, if that's really the numbers I heard and I don't even know which or what curves exactly those numbers refer to. And that was when it was first detected. I also have some memory of a follow-up visit months perhaps a year later and the doctor said that one of the curves was 8 degrees more, again that number could be off and which curve he was talking about I don't know. After that I don't know how many degrees more any of my curves might be. I'm sure they told my parents (I had to go I think every so many months for a check-up for a number of years). That covers the scoliosis. I have no memory whatsoever of what the number might have been given for my kyphosis.

Elisa
06-14-2011, 02:57 PM
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.
Hi Shy, those physical symptoms sound a lot like anxiety/panic attacks that I used to get and occasionally will still get when my imagination gets the best of me and I start to actually believe bad things have happened or are going to happen, especially to my kids. Worst feeling ever! I did talk to my family doctor about these waves of anxiety took over me and he immediately put me on an anti-depressant and it helped a LOT and I felt much more in control of how I'd react to things. I recommend talking to your doctor about perhaps trying some yourself. I'm actually still on the antis but have come off several times over the years but overall I just prefer to be on them b/c I seem to be very prone to anxiety and I can turn into a mess pretty quickly otherwise. Welcome to the forum btw.

loves to skate
06-14-2011, 09:40 PM
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?

So-Shy,

When I was young, I was very shy, but not because of scoliosis, mainly because I didn't have scoliosis then. I was shy because I was a skinny scrawny kid and the boys in school would tease me because of it. My Dad also was a bit on the critical side, pointing out my flaws (as if I didn't already know my own flaws) I think that the people who pick on other kids do so because of their own insecurities and feel better about themselves when they finds someone with more obvious flaws.

As I look back on my youth, I am glad that I was a skinny kid, because as an older person now, I am a lot thinner than my contemporaries. Trouble is, with degenerating discs, I have lost 3 1/2 inches in the lumbar spine, so I no longer have a waist. So, yes, I have some issues about body image, but as Linda said, "As you mature, you realize the physical self is not as important as the emotional self."

You can overcome your shyness and it may take the help of a good Psychiatrist and perhaps some medication. You are a person of worth and you need to learn to ignore the terrible stupid remarks of ignorant people.

Hang in there because you are worth it.

Sally

kennedy
06-14-2011, 11:45 PM
hi welcome. it ok to feel shy. when i 1st came here i was shy.

Resilience
06-15-2011, 12:48 AM
Welcome So Shy

So much of what you say rings true with me, and I'm sure many.

I was also made fun of, as a teen wearing my brace, an up to my neck version: the stares from strangers and people who saw me daily, and the kids used to call me Bionic Woman (it was the 70s).

I also have vague memories of that time in my life. As I've looked into my medical history since my daughter's diagnosis I have realized that 1. my memory was different than my medical records state. 2. It is amazing that Shriner's keeps medical records indefinately and 3. my parents and I never discussed Scoliosis again after my final visit at Shriners although I was advised to follow up elsewhere.

Oh, and lack of emotional support, also shared. My parents said, "we all have our cross to bear" not very supportive. needless to say, i'm handling it differently with my daughter.

So glad you've opened up to us. we hear you.

braceyourself
06-15-2011, 10:49 AM
Hey,

I'm pretty new here too, and I love being able to talk to others who have gone through the same thing! You don't really understand unless you have scoliosis, and that's why I love this site.

I sent you a private message that I hope you'll read, but I just wanted to tell you that scoliosis is what you make it. It can be emotional, I won't deny that. But I've learned to embrace it and because of that, I love it! I'm not self-conscious anymore. I have realized that God made me the way He did for a special reason, and for that, I am truly thankful. Scoliosis is one of the best things that I have experienced.

I hope you allow yours to become the same. Don't let it get to you. It will only depress and defeat you. If you ever need anything, we're here, but just remember that attitude and perspective have a lot to do with it.

Karen Ocker
06-15-2011, 03:16 PM
Once, when I was a young I danced with a fellow who said my hump made a good "handle".

so_shy
06-18-2011, 03:38 AM
Hi. Haven't been on in a couple of days. I wanted to acknowledge & thank Elisa, Loves To Skate, Kennedy, Resilence, Brace Yourself, Karen Ocker for the warm welcomes, for all the encouraging words. I spent the past few days just stepping back, taking a deep breath, and thinking about some of the other questions rolling around in my head and how to narrow some of them down and how to express them more succinctly so as no to go on rambling and making no sense. Tonight i just wanted to acknowledge the recent responses to my ventings and say how thankful i am. I think I'm almost ready to post a couple of those questions and i look forward to hearing the advice others have.

Again, I just didn't want more time to go by without letting you know how appreciative I am of the kind supportive words. As I said I get nervous writing here, i mean writing about how i feel about my conditions and needed a few days just to step back, give myself a little emotional space, regain some composure, and then jump back into the discussion. My next post I'll ask some more of those questions.

Thank you all so much.

golfnut
06-18-2011, 10:12 AM
Welcome, So Shy,
You have come to the right place. Most of us don't know others with scoliosis in our home towns to talk with about it. I always tried to hide my scoliosis wearing loose fitting clothing and tops on the outside. Prior to scheduling my surgery, I never even mentioned my scoliosis to my best friends. It was as if I was ashamed of the deformity and thought if I didn't talk about it, no one would notice. Now that I've had my surgery, I now know that everyone had noticed my crooked back, however, it didn't effect my relationships with people. I still had some self-confidence-not a lot, but some. It is so helpful to ask questions on this forum with others who understand the physical and emotional aspects. We will look forward to hearing more from you.

LindaRacine
06-20-2011, 11:16 PM
This just got sent to me, and I thought it was really appropriate for this topic:

http://www.wimp.com/watchingthis

jrnyc
06-21-2011, 01:31 AM
hi shy
i sent you a private message...

jess

Resilience
06-24-2011, 01:50 AM
Linda,

I really like that clip, I'm going to show it to my children.

So Shy,

Hang in there. We all hear you.

golfnut
06-24-2011, 08:22 AM
Linda,
Thanks for sharing the video. That was really powerful.

dailystrength
06-25-2011, 01:26 PM
Dear so-shy,
Thanks for sharing your thoughts and feelings. On a particularly painful day (watering plants using a large watering can is not the best thing to do!), it's helpful to know I'm not the only one struggling with discouragement, though I'm sorry for what you're going through. You have definitely found the right place to vent. Welcome, and high regards to you. We all are fighting a huge physical battle which can feel insurmountable at times. But at other times, we are productive, needed, appreciated, loved, and beneficial to others. Just wanted to say "thanks". It is not all-defeating; it just feels that way on some days.

so_shy
06-25-2011, 02:26 PM
Thank you jrnyc & braceyourself for the private messages with the encouraging words, prayers, etc.

gail govan
10-02-2011, 02:28 PM
Thank you jrnyc & braceyourself for the private messages with the encouraging words, prayers, etc.

Hi so_shy.
I know about self-loathing too. It is a real terrible feeling. And you cannot help it. And besides, you cannot help having the body you have either. You have as much right to be here on this earth and in your town as the next guy. Recently I was in a restaurant with my husband and coming towards us was a lady who must have a really strong set of scoliosis curves and was walking with such difficulty and I thought, "What beautiful courage." However you feel, when you go out and face that bunch of people where you live, you are living with more courage than any of them can possibly know.
Somehow in connection with your sadness I have thought of a book that I have heard about (I read another one by the same author) titled The Wisdom of Accepted Tenderness by Brennan Manning. Maybe Brendan Manning? Maybe your library can get it for you. I hope that in your quest for clothes that you can also find a peace within you that can conquer this great sadness. Gail

hikerchick
10-29-2011, 01:35 PM
Hi So_shy,

I mostly lurk on here, but had to reply to your post. I have struggled with self-esteem my entire life (41 now) and am really making a solid effort now to improve it. You are so worth it. You have just as much right to be happy and feel good about yourself as everyone else. Read books on positive self-talk, working on self-esteem. Maybe do some volunteer work to focus on other people. It doesn't matter a whit what other people think about you, only what you think about yourself so work on improving that relationship with yourself. These are some things that have been beneficial for me. I will keep you in my thoughts!

Shelley

so_shy
02-03-2012, 04:40 PM
Hi So_shy,

I mostly lurk on here, but had to reply to your post. I have struggled with self-esteem my entire life (41 now) and am really making a solid effort now to improve it. You are so worth it. You have just as much right to be happy and feel good about yourself as everyone else. Read books on positive self-talk, working on self-esteem. Maybe do some volunteer work to focus on other people. It doesn't matter a whit what other people think about you, only what you think about yourself so work on improving that relationship with yourself. These are some things that have been beneficial for me. I will keep you in my thoughts!

Shelley

We're about the same age.

Sorry it took so long to reply. I haven't visited the board in a while. I have a tendency to go into a kind of hiding when I get really down. I just avoid everything.

Thank you for those kind thoughts. I know it's not supposed to matter what other people think. But as I wrote in another thread, all it takes is for me to put on a shirt, look in the mirror, and I just sink. I mean. I find myself so repulsive when I see how I look in clothes, I almost want to throw up. And I hate myself. It's like I'm looking at someone else in the mirror. I say to myself, that's not me! That can't be me! What is the damn hump! I wish I could just slice it off. Bang it down or flatten it with some instrument. I mean, I sometimes wish there were a procedure to remove my shoulder blade. Or some device to hold in my shoulder blade so it would stop jutting out when I motion with my arm (as you can see in this picture:

http://i1188.photobucket.com/albums/z404/flahblosteem/zzz1bbc.jpg

so_shy
02-03-2012, 04:50 PM
Hi so_shy.
I know about self-loathing too. It is a real terrible feeling. And you cannot help it. And besides, you cannot help having the body you have either. You have as much right to be here on this earth and in your town as the next guy. Recently I was in a restaurant with my husband and coming towards us was a lady who must have a really strong set of scoliosis curves and was walking with such difficulty and I thought, "What beautiful courage." However you feel, when you go out and face that bunch of people where you live, you are living with more courage than any of them can possibly know.
Somehow in connection with your sadness I have thought of a book that I have heard about (I read another one by the same author) titled The Wisdom of Accepted Tenderness by Brennan Manning. Maybe Brendan Manning? Maybe your library can get it for you. I hope that in your quest for clothes that you can also find a peace within you that can conquer this great sadness. Gail

Thanks Gail.

Unfortunately, I still haven't found peace. I'm still fighting myself.

In the beginning, all I wanted to do was get rid of my scoliosos.

In recent years, I settled on just wishing I could find clothes to wear. But that has been a struggle (one I addressed in another thread on this message board and which I'm still having trouble despite some really good suggestions and input from other members. I'm hoping this spring to get back to finding solutions ... finding basic short-sleeve shirts that somehow I can fit into.)

jrnyc
02-03-2012, 06:00 PM
hi so shy
just a suggestion...
surgery has come a long long way from the "old days"
maybe you won't want surgery, but it might be a good idea to visit
a good scoli surgeon, one RECOMMEMDED by someone on forum who
is familiar with the surgeon...a doctor who sees scoli patients all day
long, and who will have nothing but positive suggestions for you...
maybe i missed it, but i didn't see what state/city you live in...??
most major cities have great scoli doctors....and even some
smaller towns...sorry, my native New Yorker prejudice showing...have good scoli
docs as well....
why continue to suffer when there might be a solution...?

i retired as a social worker...but i would also suggest a therapist, just
someone to talk to, to open up to, someone who doesn't judge, a good listener...

just ideas to consider.....

jess

rohrer01
02-04-2012, 01:15 AM
Hello, Shy.

I don't believe that I have posted on any of your threads as of yet. You mention that you have kyphosis. Are both of those pictures of you? I'm just asking because, while you have kyphosis, I have hypokyphosis in which there is no rounding of the upper back at all (well only 6* in my case when normal is 20*-40*, I believe). I have the same shoulder blade problem even though we are opposites. The reason for my problem is a very high and tight thoracic curve that creates quite a rib hump under my shoulder blade. I'm sure I don't need to say more as you can imagine what that does to the shoulder blade. I, too, am "in the middle" so to speak. Not quite bad enough for surgery, but bad enough to be self conscious. I'm 43 and my scoliosis has started progressing over the last few years. I've developed a new hump that sticks out of the opposite side of my shoulder blade hump. This rib hump isn't in the back, but on the side.

I've discovered a way that really hides it. Granted, I am a woman and have more clothing choices, but there are men's clothes that are similarly designed. First, I stay away from skin tight shirts. The shirts that fit the best are the well taylored button-up shirts with a larger collar (I'm not talking '70's large, but within reason). You can get taylored men's shirts in department stores that sell suits. Not all men like a straight cut. My husband has some very nice name brand taylored shirts that I found at Goodwill. He doesn't have scoliosis, but this is how I know they make them. Anyway, for my shirts, I wear a tank top underneath and leave the top couple of buttons undone. I have also seen this look on men and it doesn't look femmy at all. I think this style works MUCH better than the baggy look, as baggy clothes look like you are trying to hide something. The look I'm describing accentuates the neck and the waistline. I don't tuck my shirts in and they are rounded in the back. With men's shirts I think they make them so that you can either tuck them in or leave them untucked. I would suggest leaving it untucked IF the shirt isn't too long and the waist is taylored in enough. I hope this helps, as I do remember your other thread about clothing. That's why I'm mentioning it here.

On the more serious side, have you seen a scoliosis specialist recently? You really need to find out what is going on with your back. Degrees of curves, types of curves, rotation, disc health, etc. Find out if you are a surgical candidate.
I hope I have been somewhat helpful.

Sincerely,
Rohrer01

so_shy
02-10-2012, 06:42 PM
Hello, Shy.

I don't believe that I have posted on any of your threads as of yet. You mention that you have kyphosis. Are both of those pictures of you? I'm just asking because, while you have kyphosis, I have hypokyphosis in which there is no rounding of the upper back at all (well only 6* in my case when normal is 20*-40*, I believe). I have the same shoulder blade problem even though we are opposites. The reason for my problem is a very high and tight thoracic curve that creates quite a rib hump under my shoulder blade. I'm sure I don't need to say more as you can imagine what that does to the shoulder blade. I, too, am "in the middle" so to speak. Not quite bad enough for surgery, but bad enough to be self conscious. I'm 43 and my scoliosis has started progressing over the last few years. I've developed a new hump that sticks out of the opposite side of my shoulder blade hump. This rib hump isn't in the back, but on the side.

I've discovered a way that really hides it. Granted, I am a woman and have more clothing choices, but there are men's clothes that are similarly designed. First, I stay away from skin tight shirts. The shirts that fit the best are the well taylored button-up shirts with a larger collar (I'm not talking '70's large, but within reason). You can get taylored men's shirts in department stores that sell suits. Not all men like a straight cut. My husband has some very nice name brand taylored shirts that I found at Goodwill. He doesn't have scoliosis, but this is how I know they make them. Anyway, for my shirts, I wear a tank top underneath and leave the top couple of buttons undone. I have also seen this look on men and it doesn't look femmy at all. I think this style works MUCH better than the baggy look, as baggy clothes look like you are trying to hide something. The look I'm describing accentuates the neck and the waistline. I don't tuck my shirts in and they are rounded in the back. With men's shirts I think they make them so that you can either tuck them in or leave them untucked. I would suggest leaving it untucked IF the shirt isn't too long and the waist is taylored in enough. I hope this helps, as I do remember your other thread about clothing. That's why I'm mentioning it here.

On the more serious side, have you seen a scoliosis specialist recently? You really need to find out what is going on with your back. Degrees of curves, types of curves, rotation, disc health, etc. Find out if you are a surgical candidate.
I hope I have been somewhat helpful.

Sincerely,
Rohrer01

http://i1188.photobucket.com/albums/z404/flahblosteem/zzz1bbc.jpg

yes picture A and picture B above are of me. A shows my right arm at my side, and B shows how my hump comes out when I lift and extend my right arm.

For years I would buy extra large Tshirts and NOT tuck them in. But the extra large were too long and its obvious i'm trying to hide something because I'm a medium.

Someone suggested in my other thread I find WIDE-NECK shirts, and that is something I've begun to explore, but it's very difficult. Women have all various neck widths when it comes to shirts, but most men's shirts hug the neck very tightly. With spring and summer coming, I'm hoping I'll have better luck finding wide-neck T-shirts for men.

so_shy
02-10-2012, 06:54 PM
hi so shy
just a suggestion...
surgery has come a long long way from the "old days"
maybe you won't want surgery, but it might be a good idea to visit
a good scoli surgeon, one RECOMMEMDED by someone on forum who
is familiar with the surgeon...a doctor who sees scoli patients all day
long, and who will have nothing but positive suggestions for you...
maybe i missed it, but i didn't see what state/city you live in...??
most major cities have great scoli doctors....and even some
smaller towns...sorry, my native New Yorker prejudice showing...have good scoli
docs as well....
why continue to suffer when there might be a solution...?

i retired as a social worker...but i would also suggest a therapist, just
someone to talk to, to open up to, someone who doesn't judge, a good listener...

just ideas to consider.....

jess

In the 1980s, the old days, no one would think of doing surgery on me. But a decade ago, the specialist I saw still said it wasn't serious enough to warrant surgery. Is a decade ago the old days?

As far as going to therapist, I used to do that. It didn't help. I don't ever discuss this problem with family. I tried a long time ago, and was told to just live with it.

So now this message board is my only place to discuss this problem. And I am comforted. People have been so supportive here. They have given me some good suggestions like looking for wide-neck shirts. But I have to admit acting on the suggestions have presented a whole new set of challenges, because I have no family support, no one in the real world to help me. I have to secretly go searching for shirts for example and the few trips I've made to some department stores created tremendous anxiety, fear, and so far failure (in finding those wide-neck shirts that were recommended I look for).

rohrer01
02-11-2012, 09:05 PM
So_shy,

Even if they still have the same technology as 10 years ago, which I'm not sure. YOU could have changed in those 10 years. It's a good idea to have your scoliosis/kyphosis followed at least every five years.

It's too bad that you don't know someone else with health or self-esteem problems to befriend that could be your support and you could support in return. That would make shopping a LOT easier if you had a buddy to go with and give you honest opinions.

You could always do the photo thing like you did for the previous pictures in various items and ask opinions here. I don't know what other suggestions to give you in that regard. But you would need pictures that depicted you from the front and from the back as well as the side views.

I know that they have a "dressing your curves" in the adolescent section of the forum, why not the adult side as well?

Best Wishes,
Rohrer01

so_shy
02-14-2012, 06:39 PM
You could always do the photo thing like you did for the previous pictures in various items and ask opinions here. I don't know what other suggestions to give you in that regard. But you would need pictures that depicted you from the front and from the back as well as the side views.

I know that they have a "dressing your curves" in the adolescent section of the forum, why not the adult side as well?

Best Wishes,
Rohrer01

Thank you Rohrer01

I'm going to do that. I'm going to take some more pictures, different angles of my back, and maybe that will help. As I said, I don't share this problem with anyone so it's something I'll have to wait until I have some privacy (as I said, I stopped expressing the emotional pain of having scoliosis with family members years ago when they basically made me feel guilty about it, telling me to stop whining and just live with it).

I think if I take some pictures of me in certain types of shirts maybe that would help too, as others might see solutions I can't.

What I'm amazed is how others with scoliosis, and with rib humps worse than mine, are able to get on with their lives. I wish I had their inner strength.

I do hope some day I'll find a clothes solution. I so badly want to just breathe again, just feel ok in my own skin. (I literally burst out crying when I see myself in the mirror, when I see my hump pop out in my shirts. I literally get sickened. And that's in my own home. When I go to try on clothes in stores, and I do that a lot less these days because it's always such a nightmare experience, I often have to compose myself in the dressing room because the clothes never fit and I get sick, dizzy, and tearful.. I'll sometimes sit just a few minutes in the dressing room or compartment and try to clean myself up. And as I leave the store, I feel just horrible. And it's almost torture going through a store and seeing all the different types of shirts and knowing everyone else can just go and pick any shirt they like once they find their size and buy it, but I can't. I sometimes sit in the car and start crying. Again, I wish I knew how other people with our condition get by because it has simply destroyed my sense of self. How I miss the days so long ago, like when I was seven or ten years old, and just put on a shirt and never thought twice about it. Those days before scoliosis. I so miss that feeling of just being comfortable in my own body.)

Just to add in my edit, I realized it's the magic shirt. I'm looking for the magic shirt. Where is that magic shirt? Will I ever find it?

JenniferG
02-14-2012, 06:56 PM
So shy, it saddens me that this is so difficult for you. I might have missed this earlier, but have you considered surgery in order to fix the physical side of the problem? I am not suggesting this will fix the emotional problem, but it may help a lot, raise your self esteem for instance.

As for my pre-op shape: the world is full of different shapes and sizes, abilities and disabilities and we are all part of the world. For the most part, I ignored my scoliosis. If people noticed my shape, they did not say. If they had, I would have spoken about my scoliosis openly because it's not a crime or anything to be ashamed of. I think therein lies the problem, you appear to be ashamed of your scoliosis. Have I got this right?

We are all so different in every way, including emotionally, and your feelings are as valid as anybody else's. You seem to be suffering so much emotionally, which is why I am wondering if surgery has been considered.

Meantime, good luck with the clothes situation.

so_shy
02-17-2012, 09:54 PM
but have you considered surgery in order to fix the physical side of the problem? I am not suggesting this will fix the emotional problem, but it may help a lot, raise your self esteem for instance.

I think therein lies the problem, you appear to be ashamed of your scoliosis. Have I got this right?

Yes as I explained in another thread and I think in this one too earlier, I saw specialists and they all said I was between mild and moderate and not a candidate for surgery, despite the physical disfigurement. I pleaded with some of them but they said they can't and any qualified doctor would not do such drastic surgery (the rod surgery that some on here have had) to help me overcome the emotional/psychological damage. They made it very clear, a patient's emotional/psychological damage is not a criterion for performing such surgery. They go be severity, by how many degrees the curves are, and if there is progression of the curvature.

When I realized I wasn't a candidate for the "rod" surgery (again, that many on here have had) I went as far as seeking out doctors to find out if there was some scapular surgery to remove or lessen my hump. I inquired about cosmetic surgery for the shoulder blade. I asked doctors, "Could you cut out my scapular? Could you cut off some of the scapular? Could you insert something to restrict my scapular to stop it from protruding when I use my right arm?" And they all said there were no such surgeries. One even said something to the effect of even if there were a surgical procedure to cut out or cut off part of the scapular, it would require cutting into a lot of muscle that would damage the muscle.

So all I'm left with is finding clothes that fit. Finding shirts that don't hug my hump, if you know what I mean.

And it's been a very frustrating search.

It's so frustrating. I can't even by a pack of Fruit of the Loom or Hanes basic white T-shirts.

The only possible partial solution is as a few have suggested, that I look for wide-neck T shirts (shirts where the collar doesn't hug tightly around the neck, like women's shirts). But that has been a struggle. I've gone to a couple of department stores and had no luck.

(you can see that difference, how women's shirts have a variety of neck widths compared to men in this comparative picture:
http://i1188.photobucket.com/albums/z404/flahblosteem/0000hshaccc2.jpg )

I wish in the men's sections of clothes stores there was a section called WIDE-NECK shirts. I wish there were popular brand names of men's wide-neck shirts.

so_shy
02-17-2012, 10:02 PM
I do think scoliosis/kyphosis is psychologically much harder on men then on women. That goes against everything I would have thought before participating in scoliosis forums, but I've seen it so many times now that I just accept it.

So shy, my son (who is also quite sensitive about his curves) has had very good luck with suit jackets. Although he's not really the kind of guy/young man who would otherwise wear jackets, they just look so good on him that he's gotten used to wearing them. You can find very casual jackets that you can wear with a t-shirt and not feel too dressed up. Lots of guys also wear hoodies (although my son drew the line on them, deeming them "just too casual" :))

I'm sorry it's so hard, and I hope you get some relief.

Yes, hooded shirts, jackets are helpful during the winter months. I have plenty of those.

My problem is summer and spring and fall. Wearing basic T-Shirts. Like Hanes. Or Fruit-of-the-Loom. And every other T-shirt that most men wear.

JenniferG
02-17-2012, 10:28 PM
[QUOTE=so_shy;135642]Yes as I explained in another thread and I think in this one too earlier, I saw specialists and they all said I was between mild and moderate and not a candidate for surgery, despite the physical disfigurement. I pleaded with some of them but they said they can't and any qualified doctor would not do such drastic surgery (the rod surgery that some on here have had) to help me overcome the emotional/psychological damage. They made it very clear, a patient's emotional/psychological damage is not a criterion for performing such surgery. They go be severity, by how many degrees the curves are, and if there is progression of the curvature.

Do you know your cob angle? Do you have pain? Were the "specialists" actual scoliosis surgeons or just orthopedic surgeons? I would normally agree that having surgery on a mild curve for emotional reasons, is probably not wise, but I think when the problem is severe, and a cosmetic improvement would result in regained confidence, in conjunction with counselling, I think it would have to improve your life dramatically. Afterall, I know of cases where stomach stapling procedures were done in order to relieve severe anxiety about self-image, in conjunction with counselling. The reason I ask about scoli surgeons as opposed to orthopedic surgeons, is that I've read some very odd advice regarding scoliosis, given by orthopedic surgeons. I wouldn't waste my time on anyone other than a scoliosis surgeon.

Meantime, best of luck in your search for some wide-necked t-shirts.

jrnyc
02-18-2012, 07:31 AM
i would strongly recommend seeing a top scoli surgeon NOW...
a decade is a long time...
how do you know your curves have not worsened....?
no matter what, it is good to have a scoli surgeon follow you...
spinal problems often get worse as the years pass...

just my opinion...it is time to find out what your curves are now, in terms of degrees...
scoli surgeons are usually the MOST sympathetic of any...so there would be no need
to be nervous going to see one....


jess

Elisa
02-18-2012, 12:18 PM
My son has an obvious right side rib hump especially when he bends and his wardrobe lately has been loose t-shirts with a long sleeve flannel shirt over top that is buttoned/snapped from the bottom to about 2/3 up to the top where his t-shirt shows. I think it looks really good on him and since he is so tall and thin, the extra shirt on top fills him out a bit. I'm thinking that when the weather gets nicer he'll switch from flannel to a light cotton and will wear short sleeves.

so_shy
02-20-2012, 06:02 PM
OK, I hope this picture is more helpful.

It's four pics in one. First, on the left-hand side, me with my right arm NOT extended and you'll notice I'm "merely" roundbacked.

But on the right-hand side of the picture, you can see how my hump comes out when my right arm is extended. And you can see how the shirt "hugs my hump."



http://s1188.photobucket.com/albums/z404/flahblosteem/000001zzzzz.jpg



I need shirts that won't hug the hump, that are somehow loose and won't outline the hump.

(When my arm is down at my side, my shirt doesn't look so bad. Again, it's when I use my right arm, the hump comes out. And then I look just hideous in the shirt. If I could go through life with my arms always at my side, I would. But obviously a person can't live like that. Once that arm comes up and is extended, out flies the HUMP.)

Thank you and I hope I'm not driving people nuts by repeating the same thing over and over. I just am struggling with this, I have been for so long and I'm so frustrated and sad and filled with self-loathing.

rohrer01
02-20-2012, 09:00 PM
So_shy,
Like I mentioned before. I think a nice well fitting men's dress shirt would do the trick. You can have the collar as loose as you want it and the shoulders are generally made wide. You can get them with narrower waists. My son is built with VERY broad shoulders and no hips. He finds shirts to fit his physique. I really think you would be impressed with how that would look. If you want the wider collar, just leave a few buttons undone and wear a tank top or nice t-shirt underneath. I wish you the best. It would be nice if you could take maybe a family member along shopping with you. Take Care.

so_shy
02-27-2012, 06:28 PM
So_shy,
Like I mentioned before. I think a nice well fitting men's dress shirt would do the trick. You can have the collar as loose as you want it and the shoulders are generally made wide. You can get them with narrower waists. My son is built with VERY broad shoulders and no hips. He finds shirts to fit his physique. I really think you would be impressed with how that would look. If you want the wider collar, just leave a few buttons undone and wear a tank top or nice t-shirt underneath. I wish you the best. It would be nice if you could take maybe a family member along shopping with you. Take Care.

Yes, I've had better luck with certain kinds of shirts: hooded shirts/hooded sweat jackets and collar shirts. But those are fine for cold weather. It's the spring and summer, when it's hot, over 80 degrees, when I want to be able to wear a T-shirt like most people wear.

T-shirts like Fruit of the Loom and Hanes, and many T-shirts you find in department stores, "hug" my hump. They accentuate my hump. (again, as seen in picture of me below)

http://i1188.photobucket.com/albums/z404/flahblosteem/000001zzzzz.jpg

I'm trying to find:

(a) wide neck T-shirts that are

(b) loose in the back, that don't cling to the back but have room, that hang loosely, so as not to highlight my hump.

If you or anyone know of any such kind of T-shirts, could you please post links to such shirts, the brand name of such shirts, and/or tell me what stores sell them (Macys? Sears? JC Pennys, etc.)