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  • Hello......newbie first time posting

    Hello, I've been hanging around here in silence for a while...just reading and learning about you all. I have talked to a few of you and appreciated all of your advice, I've never known anyone with my condition so it's nice to talk to someone who actually understands. I have an S curvature and wore a Milwaulkee brace for 6 years, was told my curves would not progress, and never went back. I ignored my scoliosis for many years (19), had no pain or limitations. About 6 yrs ago I started to have pain and started losing some height but still would not go to the dr. guess I knew what was coming and was trying to avoid it....sound familiar? To make a long story short my increasing pain finally led me to go this past May and found out that my curves which were T30 and L38 when I was 19, are now T43 and L56 at age 38, I now have DDD and kyphosis and my spine isn't very flexible...of course now I am told by two surgeons that I need surgery and not to wait more than 1-2 years. I think I'm still in denial, I have pain meds now which help take the edge off and allow me to exercise for a little longer, I've recently lost 106 lbs and although I feel great physically the weightloss has done nothing for my back pain, which was my main goal. It's also a double edge sword because being so heavy all of my adult life my curves were not very noticable and now I see that I am 'crooked as a snake' which makes this all even more unbearable. Trying on new clothes in the dressing room just makes me ill, not only do I have alot of extra skin......I am deformed. I've never seen myself this way before, it is all very shocking and hard to accept. So much for increasing my self esteem After many consultations with my surgeon I have made the decision to wait.....until 2012 to have the surgery, he believes that my pain may increase but the curves won't increase enough to change the outcome and that nothing is emminent, I just need to do it when I am ready. So barring any further complications...pain down the legs, pain and limitations that I can't handle anymore ect, I am waiting and I feel a huge weight lifted off of me (no pun intended) and am planning to live this time to the fullest and enjoy my new body...crooked and all. You all have such inspirational stories, I hope someday to be able to post about my great outcome. Sorry this is such a long read.....thanks for listening
    Spring
    42 yrs old
    Milwaukee braced 1983 to 1989
    was told my curves would never progress
    at 19yrs old 1991, T30-L38
    2010, T38-L56--progression in one year 2011, T40-L67
    new diagnosis-kyphoscoliosis, DDD, Arthritis, Osteoporosis, 73 degree Kyphosis
    Surgery 1-09-12....10 hrs all posterior T4-sacrum & 2 cages
    Dr. Lenke-St. Louis Mo.
    Surgery to clean out infection 2-10-12
    Revision for broken rods 1-23-14

  • #2
    ^^ Hello and welcome!

    I think it's great that you are going to "live this time to the fullest and enjoy my new body...crooked and all."

    That's interesting that you lost so much weight and now your curves are more noticeable. My son is a string bean which accentuates his crooked spine and I'm always trying to get some weight on that boy. I'm thinking if he could beef up his body his bones wouldn't show through so much. He comes by it honestly though b/c I've always struggled to keep weight on and his dad is quite slim also.

    Question to members: Are most scoliosis patients thin by nature? Of all the pics/videos I've looked at lately, most seem to be on the svelte side.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

    Comment


    • #3
      Thank you for the welcome Elisa

      It seems to me that all the scoli's I've seen on here are on the thin side also.......I must be the exception. Didn't start to get heavy until after being put in the brace, but I don't think that was the cause unless it led to emotional eating and I just never realized, that brace was a 'killer' and really messed me up....in many ways. I thought maybe my kyphosis had been getting worse recently because when I lean up against a wall the only part of my back that touches is my hump, the doc says it is not worse it is from the weightloss....who knew
      Spring
      42 yrs old
      Milwaukee braced 1983 to 1989
      was told my curves would never progress
      at 19yrs old 1991, T30-L38
      2010, T38-L56--progression in one year 2011, T40-L67
      new diagnosis-kyphoscoliosis, DDD, Arthritis, Osteoporosis, 73 degree Kyphosis
      Surgery 1-09-12....10 hrs all posterior T4-sacrum & 2 cages
      Dr. Lenke-St. Louis Mo.
      Surgery to clean out infection 2-10-12
      Revision for broken rods 1-23-14

      Comment


      • #4
        Spring72,
        Welcome to the forum. I think many of us try to ignore our scoliosis as if that would make it go away. I've always hated to think of myself as deformed, even though I am. It was easier to just say I have a bad back. I never even told my best friends that I had scoliosis until I made the decision to have surgery. I guess the idea that it can be corrected made it okay in my mind to admit that I had this imperfection. (It's certainly not my only one!) I'm sure you'll know when the time is right for surgery.
        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


        • #5
          Originally posted by golfnut View Post
          Spring72,
          Welcome to the forum. I think many of us try to ignore our scoliosis as if that would make it go away. I've always hated to think of myself as deformed, even though I am. It was easier to just say I have a bad back. I never even told my best friends that I had scoliosis until I made the decision to have surgery. I guess the idea that it can be corrected made it okay in my mind to admit that I had this imperfection. (It's certainly not my only one!) I'm sure you'll know when the time is right for surgery.
          I am the Queen of Denial...I knew my curves were progressing because I could remember when my whole back touched the floor, or the wall, and it was impossible to ignore the fact that I couldn't do that anymore. The first time I really noticed it was early in the progression, when I tried doing some stomach crunches I hadn't done in a couple of years. It was a type of crunch where you lie on your back with legs up in the air and crunch to push the legs up in the air, and the extra force felt strange and painful on the left side of my lower back. But I talked myself into believing that it had probably always felt that way, I just didn't remember. But as the hump increased, it became gradually more and more impossible to convince myself that nothing had changed. I would lean back against a wall and find I just couldn't do it. I'd try to lie on a hard surface and realize I couldn't lie flat.

          The worst wake-up call I ever had was one day when I went to a lingerie store for the first time in years, and they had mirrors that showed my back view, something I generally avoided seeing. I was so shocked I just had to leave, and cried all the way home.

          I also found it was suddenly easy to tell people about my scoliosis once I decided that I would have surgery. It's funny how you feel like you can "come out" about it once you can view it as something that can be fixed.

          Spring72, although I have always been Skinny Minny and so can't relate to your weight problems, the rest of your story could be mine. I understand where you've been! And I have chosen to wait a year or two for my surgery, even though my curves are bigger than yours and I am in considerable pain, with radiating pain all down my left leg and into the foot.

          Don't settle for less than one of the top surgeons, by the way. Go where you need to go. I'll go halfway across the country, and it will be worth it.
          Stephanie, age 56
          Diagnosed age 8
          Milwaukee brace 9 years, no further treatment, symptom free and clueless until my 40s that curves could progress.
          Thoracolumbar curve 39 degrees at age 17
          Now somewhere around 58 degrees thoracic, 70 degrees thoracolumbar
          Surgeon Dr. Michael S. O'Brien, Baylor's Southwest Scoliosis Center, Dallas TX
          Bilateral laminectomies at L3 to L4, L4 to L5 and L5 to S1 on April 4, 2012
          Foramenotomies L3 through S1 in August 2014

          Comment


          • #6
            Spring 72
            Welcome to the forum! You have such a great attitude about going forward when you feel ready for the surgery and enjoying it all before then. I think you'll do great with those plans and get lots of support from here. Take care. Janet
            Janet

            61 years old--57 for surgery

            Diagnosed in 1965 at age of 13--no brace
            Thoracic Curve: 96 degrees to 35 degrees
            Lumbar Curve: 63 degrees to 5 degrees
            Surgery with Dr. Lenke in St. Louis--March 30, 2009
            T-2 to Pelvis, and hopefully all posterior procedure.

            All was posterior along with 2 cages and 6 osteotomies.

            Comment


            • #7
              Thank you all for the warm welcome, I'm sure I will gain much strength from all of you

              Golfnut-
              I too didn't tell anyone about my scoliosis until I found out that I needed surgery...I don't know anyone personally that has it so ppl just don't understand any of it either. The only ppl who knew anything about it said, "oh, was that why you wore that brace in high school"? That's how I am remembered........the girl in the brace

              Mojo's Mom-
              I am glad and sad at the same time that you can relate to my story, but it nice to know.....misery does love company I am planning on having the surgery in my hometown because I don't like the idea of traveling after such an ordeal, but I do believe that I may re-evaluate my options when the time comes.

              Doodles-
              Thank you for the support.......I do hope I can keep up the great attitude!
              Spring
              42 yrs old
              Milwaukee braced 1983 to 1989
              was told my curves would never progress
              at 19yrs old 1991, T30-L38
              2010, T38-L56--progression in one year 2011, T40-L67
              new diagnosis-kyphoscoliosis, DDD, Arthritis, Osteoporosis, 73 degree Kyphosis
              Surgery 1-09-12....10 hrs all posterior T4-sacrum & 2 cages
              Dr. Lenke-St. Louis Mo.
              Surgery to clean out infection 2-10-12
              Revision for broken rods 1-23-14

              Comment


              • #8
                Welcome!
                You will find amazing information and support on this site. The longer you hang around, the more you find in common with other scolis. It has been a lifesaver for many of us, to have someone who truly understands our situation and who so willingly helps with all of our questions. People who do not have it just cannot understand. We are here!

                I made up my mind a couple years ago that surgery was inevitable. But it seemed unreal. I just kept putting it off until next spring, next winter, next spring..... But then my pain level took a change for the worse this past 6 months, and I shrank 3". I knew I had run out of time. You, too, will know when you have reached the end of the procrastination! Hooray for you, to choose to live this last span of time before surgery with a great attitude. Do some things you think you may not do after surgery. No regrets!!
                Jenee'-52
                Bend, Oregon

                Braced 3 years in high school
                Lumbar 70'+ Thoracic 70'+
                I had 3" shrinkage in 6 months...

                Surgery Jan 10, 2011
                9 hours
                T3 to S1 with pelvic fixation
                Both curves now 35'

                Possible revison for Flatback Syndrome
                Non-fusion
                Loose/broken hardware-awaiting CT results

                Here is the link to my before and after pics..
                http://www.scoliosis.org/forum/showt......&highlight=

                Comment


                • #9
                  Thank you Jenee' for the warm welcome

                  I am a long standing member of the procrastinator club..idk, maybe that will change sooner than I think You are right and I do believe I will know when the time is right for me.....hoping I don't put it off too long. I really need a push to do something 'big', I don't deal with change very easily. I'm glad you have decided to go for it........I see you are set up for January, good luck to you, I will be waiting to hear about your wonderful outcome
                  Spring
                  42 yrs old
                  Milwaukee braced 1983 to 1989
                  was told my curves would never progress
                  at 19yrs old 1991, T30-L38
                  2010, T38-L56--progression in one year 2011, T40-L67
                  new diagnosis-kyphoscoliosis, DDD, Arthritis, Osteoporosis, 73 degree Kyphosis
                  Surgery 1-09-12....10 hrs all posterior T4-sacrum & 2 cages
                  Dr. Lenke-St. Louis Mo.
                  Surgery to clean out infection 2-10-12
                  Revision for broken rods 1-23-14

                  Comment

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