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View Full Version : Recently I was shocked over something I shouldn't be shocked about...



jelysc613
07-26-2006, 09:37 AM
So... I'm a pretty happy-go-lucky person, able to deal with a lot and not let things bother me. The other day, I experienced something that kind of brought me down for a bit, and I feel the need to share because I know I am not alone. Also, it's a big part of the reason I came to this board...

Did you ever picture yourself in your mind and see yourself as one way... then you look in the mirror and remember "Oh, I don't look like that." Obviously, you don't see your own back very often. My surgery was 12 years ago, and I'm thinking that maybe the last time I took 2 mirrors and checked out my bare back was probably 10 years ago. When I picture my back, I see a straight, normal, beautiful back... with just a thin scar running the length of it. I don't care about my scar and never cared if people saw it. A few weeks ago, I got my hair cut, and as I was about to get in the shower, I decided to check out my new 'do ;) I took a mirror and checked it out in a full length mirror. When I saw my back, I was actually surprised and disappointed. It is still crooked (they never fixed my lumbar curve), my right shoulder blade sticks out, and i have a bit of a rib hump on one side. I should NOT be shocked by this and it should NOT bring me down anymore. But it did for awhile. You can't really see this about me with clothes on, so it's really not a big deal. But it brought back lots of memories and made me feel sad for a little while. I am now back to my state of denial and thinking I have the perfect back (Haha... and what's so wrong with that?!?!), so I am doing fine. Maybe delusions aren't so bad after all... why not live my life thinking I have a lovely back? ;)

I often find myself telling people "I had scoliosis" and when I saw my back for what it is, it hit me that "I have scoliosis." I put most of that whole debacle in my past, so when I remember that it's still with me, I feel sad. I started researching this condition all over again, and in my searches I found this forum and also purchased ScoliBands for myself and my parents :) I am so overwhelmingly happy that I did... everything truly does seem to happen for a reason. I feel so safe and comforted here, I enjoy reading people's stories and triumphs over scoliosis, and I feel like I found friends. I am still the only person I know with scoliosis and who has had that surgery, so even though I knew I was definitely not alone, it was hard not to feel like I was sometimes. So this is one big "THANK YOU" (probably not the last!) to everyone here who has read my posts and given advice or kind words. And one big "You're awesome!!!" to everyone posting on this forum :D

Basically, I just wanted to put this out there in case anyone else has "delusions of grandeur" about their back and has ever been seriously let down to find out they were a bit wrong. It's a crummy feeling, but I'm giving you permission to get over it relatively quickly and keep thinking you're perfectly perfect. :)

abhbarry
07-26-2006, 09:48 AM
I just wanted to say that the scoliobands are so awesome! I also purchased them for my husband and my mom and I feel that there is a sense of connection and hope when wearing them (perhaps that sounds cheesy). But, I'm glad to know that we can give even a few dollars to support a cause that is so close to all of us and it makes me feel slightly more proactive. I also find that some people do ask about them and then are interested in learning more about scoliosis.
It was also very touching when one of my friends said she was going to purchase one and wear it until I have a successful surgery and recovery! :)
So, I just wanted to put the plug out there for the scoliobands because I didn't know about them and I think they are for a great cause!!
Blessings. :)

jelysc613
07-26-2006, 09:56 AM
I agree! Everyone should get ScoliBands!! :) I like when people ask me about scoliosis, because there are too many people out there who have no idea what scoliosis is! I had someone ask me once if it was contagious... sheesh :rolleyes: (However, it is unfortunate that these bands have since become a fashion statement and I recently saw one for Xbox... can't they JUST be designated to supporting a cause?!)

HGD24
07-26-2006, 10:13 AM
1 and a 1/2 years after my surgery, I also find myself saying to people, "I had scoliosis" and then I always correct myself. I've found that I enjoy telling people about it because so many people just don't know what it's all about. I e-mailed my family and friends before and after pics of my x-rays and I received so many comments from people saying they didn't realize that "that's what scolisis did to a person's back" and when I ask what they thought it was, most of them couldn't answer, they just knew it was something that affected the spine.

I feel like I'm educating people through my experience and it's a great feeling. I've met a few people at work who have teenage daughters going through the screening and "watching & waiting" process and they look to me as a sounding board for their experiences and questions. One dad who's daughter was just released from wearing her brace, was told by the doctor that she never has to see the doctor again. I suggested that she goes to someone every couple of years becuase I didn't keep track of my scoliosis and wound up with two 75 degree curves. He said that he and his wife had already discussed it and weren't comfortable with the doctor's orders either and that they intend to have her checked every couple of years because they knew what I had been through and it's helped them to realize that this problem may or may not go away and at 14, they don't feel that their daughter should be done getting checked. It made me feel so good to know that because of my experience, someone else may be able to catch their progression sooner.

JamieAnn
07-26-2006, 01:08 PM
Jelysc613, I had to respond about the "double mirror" thing. I was in a dressing room about a year ago and I was horrified when I saw my back from that angle. I have not had surgery, but I was in denial that I looked crooked in any way. It's the weirdest thing how I look at myself in the mirror normally, but am so used to the way I look that I don't see any curves. Yet as soon as I see myself in a double mirror I look like a totally different person! I try to avoid those mirrors now! :rolleyes:

I feel like "how on earth do people not notice that?!" and it is quite depressing. I saw someone the other night in a bar and I noticed she had scoliosis, and I thought to myself, no one else notices that but me. It does make me feel better to know that even my closes friends and family do not seem to see it at all.

Jamie

jsully
07-26-2006, 01:55 PM
ScoliBands! Where do I get them? I also have never been concerned about disfigurement. Most people don't notice. When they do it's usually someone in healthcare and they think I have a hip problem (limping). For some reason when someone notices I get embarrased :o ! I myself never thought I looked bad until recent viewings of my vacation video. Holy crap :eek: ! How could I not see this! How come no one else thinks I look strange? They must be blind.
jsully

mattie
07-26-2006, 06:47 PM
Scolibands, I was going to ask the same question. Where do you get them? I had never heard of them until now.
Mattie

jsully
07-26-2006, 07:09 PM
Just bought mine! Thanks!
jsully

abhbarry
07-26-2006, 08:10 PM
You can buy the scoliobands on the NSF website, under store . . . I think. :)

Silverfox
07-29-2006, 04:31 AM
How much attention do you pay to other people's looks? I'm guessing like most of us very little. Occasionally perhaps you'll walk past someone exceptionally tall or extremely attractive and maybe they'll hold your attention for 30 secs. Then you'll forget about them. My point is that other people really don't care very much what you or I look like. We think that our flaws are somehow of major importance whereas the rest of the world is largely oblivious.

Unfortunately scoliosis is not curable. Some people get a great result from surgery others less so. Nobody will get a perfectly normal spine though. My guess though is that your scoliosis is probably not very noticeable to others. You've done the brave part by having surgey now you need to let go and put your efforts into other aspects of your life e.g family, career or whatever matters to you.

Karen Ocker
07-30-2006, 10:07 AM
I tried all sorts of camophlage and I could not hide the fact I was a "leaningtower" with a large rib hump; the worse the scoliosis the worse it looks.

In my case, the progression was so insiduous that I sort of got used to looking at myself (front view) on a daily basis. When I look at all my recent pre-op pictures I am shocked at how deformed I really was.

Curves were:
Cerv 30/Thoracic 80/ lumb 40--reduced by 50% with revision surgery at age 60.
My original surgery in 1956 gave only a modest reduction for the 100deg major curve and did little for the rib hump. I was actually heartbroken as a 15year old to have been left with so much deformity after going through so much---because scoliosis surgery in 1956 involved: a series of 3 casts, 2 stage surgery and not walking for a year because no hardware was used.
People used to tell me(as a teen) that "it's what's inside what matters". That did not help. I personally felt having scoliosis to that degree was heartbreaking.

I did opt for a thoracoplasty this time. Now the hump is much smaller and my co-workers say "you would never know I had scoliosis unless they knew me before".

This is why I see red when I hear people wait for the "pain to get unbearable" :mad:
or for the curves to get even larger :eek: before surgery is contemplated. It the curves are progressing (as an adult I mean)--the're progressing and they are not going to stop because they've reached a certain point. It is much harder to get a great correction and improved appearance.

On the other hand one must be ready to go through with it, find the best surgeon and support.