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Radar6590
01-06-2012, 01:23 PM
Hi there,

I'm new to these forums, and I've never really posted anywhere about my condition before, so I guess like many other people I'm a little nervous. As a short summary of my case, I was born with a tumor in my chest cavity that was not recognized until I was 1 and a half, due to it being mistaken for my lungs! When they removed the tumor, I developed scoliosis. I had to learn how to walk again and due to an imbalance in my hips I walk with a limp (to conserve energy, I found out from a gait test in 2009). I braced from when I was 6 until I was 9, when my curvature reached 67 degrees, and it was highly recommended I have surgery for the harrington rods. I got titanium rods that year, 1999, and they lowered the curve to 27 degrees, and it's now raised to a fairly stable 31 or so.

I've sort of just been living with it ever since. However, I have always felt that people have judged me (especially initially!)based on my physical appearance. My fiancee's father, after meeting me, told her that he knew nothing about me except that I looked strange and walked with a limp! Talk about insensitive. I get along with him now, but these are the kinds of things I imagine people think at first. I've always been a little bit recluse, but lately I've found that my self-esteem, in general has been falling. I can make friends, but I tend to not want to hold them back (i.e., go hiking, or bike riding, or on trips, feel nervous at the gym) and I worry about what others think. Obviously this is silly, and I recognize the problem.

I guess what I'm asking here is how do other people with scoliosis cope with these kind of interpersonal relationships, as well as come to grips wth their condition (the recognition that it's not going away, that this is you, for the rest of your life, even if you've accepted in the moment that you have it), and generally just stay afloat emotionally so as not to get into a funk. As a note, I am male if that factors into things.

Kevin_Mc
01-06-2012, 02:02 PM
Welcome Radar! I understand why you feel nervous posting your story, but I can assure you that the people here can be/are extremely supportive. So again, welcome.

While I can't speak directly about living with scoliosis, I can speak to your overall question of living with a chronic condition. The first thing I think of is that it's so great that you have a partner in this (fiancee). When my wife spoke to her father to let him know that our dating relationship was moving towards marriage, he responded with something like "are you sure you want to get involved with someone who has a chronic health condition". Certainly not as insensitive as what your father-in-law-to-be said about you, but it definitely made me feel like what you're describing. My wife was completely unphased by his comment and kind of called him out on it. Over the decade that followed, as my condition got worse eventually leading to multiple surgeries, she was the one that I leaned on the most. So, it's so great that you have her.

The second thing that helped me tremendously was counseling. I was in grad school during the really bad parts and so was very lucky to have FREE access to an amazing psychologist. (I recognize how truly lucky I was to have that available to me for free). But even if I were doing it now, finding a professional is invaluable. Even if you can only afford a couple of visits. I know that some counselors also have a sliding scale.

The third thing was to hook up with a chronic health support group. This was just a temporary (5 or 6 weeks) thing. It was a weekly meeting with other people who were dealing with chronic health conditions plus family/support people. It was mostly cancer patients, 2 of them undergoing full chemo+radiation, i.e. no hair, feeding tubes, etc..., and this group helped me 1. to see that it can almost always be worse and 2. by showing me that other people, regardless of disease, feel the same way, i.e. validating my fears, worries, doubts, panics, humor, etc... It was also unbelievably humbling and powerful to have one of the cancer patients, who was hoping to have her feeding tube removed in a few weeks so she could eat real food for the first time in 3 or 4 months, offer me compassion and validation for what I was experiencing.

At any rate, you might have already done some of these things, given that you've been dealing with health stuff all of your life. But these were the things that helped me the most.

LindaRacine
01-07-2012, 12:07 AM
Hi...

Welcome.

Men seem to have more of an issue with the cosmetic aspects of scoliosis than women do, though I think body image issues are extremely common in people with scoliosis, both male and female. As you read more here, you'll find several threads on the topic. I think Kevin's advice is excellent.

Most of us eventually know that what's on the outside is nowhere near as important as we make it out to be, but it's not something that is easy to get past when you see it in the mirror every day. I'm fairly certain that if I were to survey my circle of friends and family, and ask them to be really honest and tell me if they ever have negative thoughts about my body, very few, if any, would ask what I was talking about. That doesn't stop me from thinking about it all the time. The one think I've been successful at, is knowing that I'm the only one who really cares about what I look like, and that my friends don't judge me. I hope you can get there someday.

Regards,
Linda

Radar6590
01-11-2012, 03:20 PM
Thank you both so much for your responses. So far, I agree, people here seem very nice. I'm glad there's a site like this to help people with these difficult issues.

-Kevin: I haven't tried joining a support group as of yet, so I'll definitely start looking around my area for something like that. It sounds like you had a great experience with it. As you've said, my fiancee is very supportive and maybe I don't count her among my blessings (in that regard) as often as I should. That alone has me looking up a bit. :)

-Linda: It's actually funny that you say that! Because I've been dealing with my condition for practically my whole life, I grew up fairly unaware of how I was different, or how different I looked. It wasn't until much later, when I was in my early teen years, that I saw some video footage of myself and went "wait, what?" Even then I was pretty much ok with it, and it's only been recently that I've been analyzing how people react. I guess I had it right before, to just kind of let it go and be comfortable with myself. Thank you for the kind words and advice, it's much appreciated.

so_shy
02-03-2012, 04:31 PM
I guess what I'm asking here is how do other people with scoliosis cope with these kind of interpersonal relationships, as well as come to grips wth their condition (the recognition that it's not going away, that this is you, for the rest of your life, even if you've accepted in the moment that you have it), and generally just stay afloat emotionally so as not to get into a funk. As a note, I am male if that factors into things.



Hi Radar.

I'm relatively new here. I too am a male. And having scoliosis has destroyed my self-esteem and left me utterly depressed. I'm in my 40's now and still haven't come to accept it. "The recognition that it's not going away" -- part of my problem is I still can't accept that fact. I go to bed every night thinking maybe one morning I'll wake up and magically it will be gone.

My biggest problem is finding clothes to wear. I just wish I could wear a basic T-Shirt without looking so freaky.

I have no social life. I don't date.

All I have to do is look in the mirror and my stomach sinks, my head spins, and I simply collapse, emotionally that is. I feel like a monster.

I suppose some people are just better equipped to handle having this condition. I was a shy scared kid before I developed scoliosis, so when I got it in my early teens, it only aggravated my pre-existing low-self esteem and insecurity.

This site is the ONLY place I ever talk about my condition. If it weren't for this message board, I'd have no one to talk to about it. I'm too embarrassed to discuss with anyone in the "real world" how devastating emotionally/psychologically this condition has been for me.

Pooka1
02-03-2012, 04:48 PM
SO shy,

How big is your curve? If it was straightened, would that make you feel better about yourself? Have you considered surgery?

so_shy
02-03-2012, 05:00 PM
SO shy,

How big is your curve? If it was straightened, would that make you feel better about yourself? Have you considered surgery?

Hi Pooka1

Doctors told me years ago I was mild to moderate. I saw several scoliosis specialists and they all agreed I was not severe, and that I was not a candidate for surgery, despite recognizing the cosmetic disfigurment.

Speaking of my kyphosis, I'm more round-backed on my left side than on my right side. But while my right side is less roundbacked, my right shoulder blade shoots all the way out when I use my right arm, as you can see in this picture:

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

And it's that hump (that I have only on my right side, not my left) that makes me feel so repulsive and that crushes my spirit and that has made my life so miserable. I know it shouldn't matter. But I can't control my reaction to it when I see it. It just sickens me.

Pooka1
02-03-2012, 05:19 PM
Hi Pooka1

Doctors told me years ago I was mild to moderate. I saw several scoliosis specialists and they all agreed I was not severe, and that I was not a candidate for surgery, despite recognizing the cosmetic disfigurment.

Speaking of my kyphosis, I'm more round-backed on my left side than on my right side. But while my right side is less roundbacked, my right shoulder blade shoots all the way out when I use my right arm, as you can see in this picture:

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

And it's that hump (that I have only on my right side, not my left) that makes me feel so repulsive and that crushes my spirit and that has made my life so miserable. I know it shouldn't matter. But I can't control my reaction to it when I see it. It just sickens me.

Hi So shy,

First of all, do NOT beat yourself up over the entirely NORMAL reaction to your rib hump. Many people would be very, very saddened over that and you should not feel bad about your normal reaction to that.

Second, have you have a recent set of radiographs? If your rib hump is so large, it sounds like your curve (scoliosis and/or kyphosis) may have progressed. Even curves as small as about 30* as maturity have been known to progress to surgical territory by the time the person is only a young adult. There are several examples of this on this and other groups.

It seems to me that seeing an experienced orthopedic surgeon specializing in scoliosis/kyphosis now to find out if your curve has progressed would be in order. If you are in surgical range, do you think having surgery will make you feel better about yourself?

Where do you live (state)?

so_shy
02-10-2012, 06:26 PM
Hi So shy,

Second, have you have a recent set of radiographs? If your rib hump is so large, it sounds like your curve (scoliosis and/or kyphosis) may have progressed. Even curves as small as about 30* as maturity have been known to progress to surgical territory by the time the person is only a young adult. There are several examples of this on this and other groups.

It seems to me that seeing an experienced orthopedic surgeon specializing in scoliosis/kyphosis now to find out if your curve has progressed would be in order. If you are in surgical range, do you think having surgery will make you feel better about yourself?

Where do you live (state)?

It's been a decade since I last went to a specialist and had X-rays and a check-up. But I do not think my conditions have worsened. I say that because I took pictures a decade ago of my back, of my hump, and I took pictures this year and I can see there has been no change. (I mean, there may have been some slight change detectable by an X-ray, but the pictures show nothing visible. I've put the pictures side to side and see I look the same.)

As far as surgery making me feel better about myself, years ago I begged for the surgery. I mean I literally pleaded with doctors and family members. But they said I wasn't a candidate and such dangerous surgery is not something any good doctor would do just to help me with the emotional damage, that no doctor would do it as "cosmetic surgery" the way some people get face lifts or tummy tucks.

These days, I just want to be able to wear clothes. I can live with what I have if I can conceal it. And by conceal it I mean finding clothes that don't highlight my hump, or finding a device that might even restrict my hump (because my hump ONLY appears when I use my right arm. The weird thing is that my back is only rounded when my arms are at my side, but when I raise my right arm and extend it, for example to open a door, or shake a person's hand, it is then the shoulder blade comes flying out, and all of a sudden I go from being roundbacked to this huge hump appearing. And I've always wondered if anyone else has this unusual type of hump. one that doesn't appear unless I am using my arm. Again, when my arms are straight down at my side, you don't see any hump. I look just round-shouldered. But its when I use my right arm, the right scapula comes shooting out, so to speak, and all of a sudden I have this big hump on my right side. I think you can see that from the picture I included. http://i1188.photobucket.com/albums/z404/flahblosteem/zzz1bbc.jpg The picture I posted shows two pictures of me, if you noticed, picture A shows my arms down, and right next it it, picture B shows my arm raised, and you see the hump. And I just wish I could find a shirt that doesn't highlight it so much, like a wide-neck shirt, and/or a device I could wear underneath that would restrict the scapula from popping out every time I use my right arm.)