New member

[jrnyc]

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]

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]

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]

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]

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]

hi welcome. it ok to feel shy. when i 1st came here i was shy.

[Resilience]

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]

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]

remarks about scoliosis.

Once, when I was a young I danced with a fellow who said my hump made a good "handle".

[so_shy]

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]

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]

This just got sent to me, and I thought it was really appropriate for this topic:

http://www.wimp.com/watchingthis

[jrnyc]

hi shy
i sent you a private message...

jess

[Resilience]

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]

Linda,
Thanks for sharing the video. That was really powerful.