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  • Denial of Deformity

    I just was thinking about this forum and how helpful it has been for me to realize that I am not the only one . . . I've known about my scoliosis since high school, but never mentioned it to even my best friends in high school, college, and the past 28 years since then. In retrospect, I guess I was embarassed to have a deformity and certainly hoped that no one noticed it. I usually had to have one pant leg hemmed shorter than the other. When I went to Dr. Lenke 6 years ago, I was asked to fill out a questionaire about adult deformity. I took it home and threw it away because I couldn't accept that I had a deformity. Occasionally, someone would ask me if my back was bothering me (obviously because of the way I walked) I would respond, "No, it's fine." My husband rarely mentioned my back because he knew it made me feel uncomfortable. After he noticed my rib hump increasing, I decided to go back to Dr. Lenke after not seeing him for 4 years. Now that I have the surgery scheduled, I tell people that I have had scolioisis since I was a teenager and am willing to talk about it-quite a change for me! Very few have been surprised that I will be having surgery since they all could see that something was wrong. Am I the only one that has been in denial for so many years?
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  • #2
    Stories like this make me relieved that my teenage twins were able to get great cosmetic corrections in addition to halting progression. It scares me to think how different their lives would be absent this surgery. They are sailing through high school without any regard for their backs.

    What's a psyche worth? What price can you put on self confidence in a teenager? Its really priceless. You only go around once. We could all get hit by a bus tomorrow. Well not all of us because that would strain the odds but I hope you get my point.

    Good luck with your surgery.
    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."

    Comment


    • #3
      Hi Karen

      I was in denial for a very short time. It was during the "shock" phase that happens right after diagnosis. I learned to accept it while young. I think that having a best friend in high school with phocomelia, might have changed my thoughts...Jim taught me how to evaluate my true friends, and how to accept my deformity with dignity.

      Since he had a deformed leg, he had wooden legs. At the beach, in front of all the girls, he would pop that sucker off, and hop on one leg to get to the ocean. I guess if he could do that, I could take my shirt off, right?

      I know its harder for the girls, but no, I never denied my scoliosis. Yes, I was fortunate to have had him as a friend. He became a psychoanalyst for the state of NJ. He is an expert in this field.

      Here is an example of phocomelia.
      http://www.youtube.com/watch?v=mqgTdVuGrAQ

      I never hid my scoliosis from anybody. I have always been willing to talk about it. We all have our problems, its just best to be completely open about it and do the best you can with what you have and have a blast doing it!
      Ed
      49 yr old male, now 63, the new 64...
      Pre surgery curves T70,L70
      ALIF/PSA 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

      Comment


      • #4
        Yes, I was the same way basically until I found this site. Ill admit, I still am VERY self-concious about it, and I havent gone swimming in many years. I dont know, I guess Ive just been embarassed about having a huge hump on my back. For my job I have to do alot of crouching and bending, so I always try to make sure nobody is behind me when I bend down or I turn to the side. I am definately more willing to talk about it now, but hate letting people see it. Weird.
        Pre-surgery- 80°+ thoracic/ 60°+ lumbar
        Still unsure of post-op numbers
        37 yrs. old, 6'7" ish
        Scoli pics

        Comment


        • #5
          I am not sure whether this is denial or not, but I ignored my scoliosis for most of my life. I rarely thought about it and never discussed it until the pain started. Then, one day I noticed the hump. And the wedged in side. And how much more I was having to take up one hem of my pants. I couldn't ignore it any longer. But it was the pain I wanted fixed more than anything. There have been some good side-benefits of the surgery.
          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

          Comment


          • #6
            Karen,

            I never hid my scoliosis and occasionally, I would talk about it- sometimes to people I didn't know well and always with friends. I believe that I am lucky within the severe scoli range in that my curves were always very balanced and my rib hump is less pronounced than some I have seen. Sometimes a bit of "magical thinking" got me through my life- I seemed to have the ability to cycle through by forgetting about it, then getting occasionally shocked back into reality, then some sadness, then acceptance again, and back into denial.

            Still, I always kept my hair long until more recently, and I still feel too exposed if it's shorter than shoulder length. Don't know why that protection feels necessary, but it always has. Samson complex- if I cut my hair, I will lose my strength. There were certain clothes I wouldn't wear, but I always wore bathing suits, etc figuring if the truth be told: Better to show some better parts along with the bad.

            I think the hardest time was when I was a teenager and early 20's. It almost seems like I just woke up to being 16 years old and none of my parts worked in coordination.

            When I read some of the cosmetic reporting on the forum, it does open a door I've kept safely shut, and makes me want to fix the "deformity" so I can feel that elation of seeing what I really am, have been all along, before I became how I am now. Whoaaaa, that last sentence makes absolutely no sense but I will leave it because I know what I mean, and I suspect a few others might. Boils down to: what I might have been.

            When I last visited a doctor in April and he found my curves to measure substantially less than the previous doctor, I was both happy/relieved but also a bit mildly disappointed that I would have to stay suspended in this gray zone of just enough pain but not enough, and just enough progression but not enough for surgery to be highly recommended. My belief is that when the day comes that I am in the red zone either with pain or progression, I would not hesitate to take the leap. After reading so much on this forum, it does not seem like the dark unknown anymore. Not that it seems like the fuzzy familiar, but I would know what I am up against.

            Karen, I hope you go out and buy strapless gowns, wear your hair up in a swirl, and enjoy your future body. I talked to a woman recently who had the surgery about 12 years ago and never leaves the house without a showy waist belt on. There are perks involved.
            Amy
            58 yrs old, diagnosed at 31, never braced
            Measured T-64, L-65 in 2009
            Measured T-57, L-56 in 2010, different doc
            2 lumbar levels spondylolisthesis
            Exercising to correct

            Comment


            • #7
              I was pretty much in denial as a teen. I didn't like to talk about height because when we (me and my peers) were all in our final growth spurt in high school, I made it to 5' 8-1/4" then went to 5' 7-1/2". I never told anyone in high school because my shrinking embarrassed me. I disguised my unevenness with postural adjustments - and still do. I am more self-conscious now than I was back then. However, I am more willing to talk about it now than I was then. I think I am one of the more fortunate folks with balance that make my curves less noticeable. Although, when I showed one of my friends who didn't really know what was wrong with my back, I was met with a horrified gasp. I guess it looks worse than I thought. Maybe I didn't think it was that bad because I'm used to the way I look. I really don't know what other people think when I wear a swimsuit.
              Be happy!
              We don't know what tomorrow brings,
              but we are alive today!

              Comment


              • #8
                Karen, I sure can relate to what you are saying. I spent my entire life ashamed and embarrassed about my deformity. I did not want anyone, even my family, to know I had this malady. And nobody did know until the last few years when I started to have problems and began looking into surgery. However, my sisters did notice in recent years that I was losing height and carrying one hip higher. What was difficult for me too as a younger woman was my relationships with men. Men found me beautiful and I attracted a lot of men who wanted beautiful women with beautiful bodies. How would I ever explain my deformity to them? I found myself shying away from men more and more.

                Sharon, I’m thrilled for your daughters that they have been spared from the anguish of going through life with a disfigurement. How I wish this current technology was around when I was younger.

                Comment


                • #9
                  I'm now about 6' 3, when I was younger and still going throug my growth spurt I measured at 6'4 and would, I'm sure, be taller if it werent for this curve.
                  I was never able to lie to myself about it and have always been super self consciouus about it, it was crippling during my teens and twenties.
                  Surgery scheduled for January 2011
                  by Charles (Ted) Shuff
                  http://cabellhuntington.org/services...ce/physicians/
                  http://s910.photobucket.com/albums/a...dayjunk/Davis/

                  "Adversity is the state in which man most easily becomes acquainted with himself, being especially free of admirers then."
                  -- Samuel Johnson
                  "Beer is proof that God loves us and wants us to be happy." -
                  -- Benjamin Franklin

                  Comment


                  • #10
                    i have found that one of the few perks of aging is that i dont care what people think of me (as i did when i was younger)...
                    i've read others who say the same...

                    i have to wonder about any guy who would not date someone who has a curved spine...if they take the time to get to know you, you'd hope it wouldnt matter all that much to them...

                    i think it is sad that young girls have to worry about such things, when they have enough to be concerned about with their health...

                    jess

                    Comment


                    • #11
                      Okay, I guess I was lucky. I wore a back brace in 1985-1986. I always wore a tank-top under it and a baggy Hawaiian shirt on top with a skort (remember those?). My good friends who knew I had a brace would ask me if it made me feel self-conscious, but it truly didn't. At Halloween I would wedge a knife in the side between my real abdomen and the brace and make it look like someone was stabbing me. Had fun with it!

                      My figure has become progressively more disfigured, but it still doesn't really bother me much. It's true that I look for clothes that are a little looser and I don't wear anything open-back if I can help it, but I guess I just figure people aren't really looking at my BACK. Hopefully anyone I care about is looking at my face! Obviously I would enjoy the cosmetic benefits of surgery, but I don't think I can go as far as to say I've been ashamed of my scoliosis. Heck, it's not my fault anyway!

                      Now, if we want to talk about baby weight, that's a different story...

                      ,
                      Evelyn
                      age 48
                      80* thoracolumbar; 40* thoracic
                      Reduced to ~16* thoracolumbar; ~0* thoracic
                      Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
                      Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
                      Not "confused" anymore, but don't know how to change my username.

                      Comment


                      • #12
                        hey Ev....good for you! great attitude!

                        jess

                        Comment


                        • #13
                          [QUOTE=foofer;101991]I would have to stay suspended in this gray zone of just enough pain but not enough, and just enough progression but not enough for surgery to be highly recommended. QUOTE]

                          Amy,

                          Can you elaborate on this? How much progression have you had? How much pain are you in? I am somewhat surprised you are not getting strong recommendations for surgery. I have gotten strong recommendations from most docs I've seen, and my curves are roughly the same as yours (lower a little worse, upper a little better). I've been progressing 1-2 degrees per year, and I have severe 20+ rotation, but I'm not in a great deal of pain. Sure would love to hear what you've heard and what's different with your situation!

                          Thanks,
                          Evelyn
                          age 48
                          80* thoracolumbar; 40* thoracic
                          Reduced to ~16* thoracolumbar; ~0* thoracic
                          Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
                          Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
                          Not "confused" anymore, but don't know how to change my username.

                          Comment


                          • #14
                            Thanks for all of your comments. Fortunately, I didn't have to wear a brace during my teenage years and I had no rib hump or super obvious curve until my 40's, so I was able to wear any type of clothing/swim suits, etc. when I was younger. Now that I have "come out of the closet" with my scoliosis and know (hope) it will be corrected after surgery, I'm not as self conscious.
                            Thanks, again. Evelyn, I love your attitude.
                            Karen

                            Surgery-Jan. 5, 2011-Dr. Lenke
                            Fusion T-4-sacrum-2 cages/5 osteotomies
                            70 degree thoracolumbar corrected to 25
                            Rib Hump-GONE!
                            Age-60 at the time of surgery
                            Now 66
                            Avid Golfer & Tap Dancer
                            Retired Kdgn. Teacher

                            See photobucket link for:
                            Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
                            Before and After Picture of back 1/7/11
                            tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
                            http://s1119.photobucket.com/albums/k630/pottoff2/

                            Comment


                            • #15
                              I guess I didn't deny scoliosis to myself, but I sure didn't talk about it with anyone else. I think it's because I didn't know anyone who had it and didn't want to point it out to others with the hope that maybe they had not noticed my lopsidedness.
                              Karen
                              Karen

                              Surgery-Jan. 5, 2011-Dr. Lenke
                              Fusion T-4-sacrum-2 cages/5 osteotomies
                              70 degree thoracolumbar corrected to 25
                              Rib Hump-GONE!
                              Age-60 at the time of surgery
                              Now 66
                              Avid Golfer & Tap Dancer
                              Retired Kdgn. Teacher

                              See photobucket link for:
                              Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
                              Before and After Picture of back 1/7/11
                              tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
                              http://s1119.photobucket.com/albums/k630/pottoff2/

                              Comment

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