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  • New Here and considering surgery

    Hi.

    I'm a 26 woman and I have had scoliosis since I was 13. Iwas braced until age 16. anyway I just had xrays taken in 2002 (when I was 22) and they showed that the curve had progressed to 37 degrees thoracic and 33 degrees lumbar. I have to get more Xrays this year and I am almost positive htey will show that the curve has progressed. I have back pain all day every day. Not horrible pain, but pain all the time none the less. I also have a rib hump tat I hate hate hate. I'm very self conscious about it and it is getting tothe point where even seeing a magazine with a picture of a bare back makes me choke up and want to cry because I feel like the hunchback of notre dame. I don't like going out with friends, or being around people because I feel like people are looking at me and can tell that I have scoliosis etc. It is ruining my life. I'm on several anti-depressants not necessarily because of the scoliosis but the scoliosis is one major concern and stressor! My rib hump also causes me a LOT of pain! It feels like it is going to poke through my skin and sometimes I get a burning sensation in that area!

    Anyway if the curves have progressed I am most likely going to have the surgery. I have no idea what to expect or even if the doctors will perform surgery on me because my curve is not as extreme as others'. I'm sure my psychologist will testify that it is causing me extreme emotional anguish. My mother tells me NOT to have the surgery because I'll be in a full body cast for a year or possibly paralyzed for life?! Then I read about people who have the surgery and it takes them about a month to recover and they are fine. What gives?

    I was crying at work today about my back and so I decided to post. I hate scoliosis. I really do. I don't even feel like a human being. I feel like some sort of creepy monster.
    28 years old. Dx at age 14.

    1994 20T/20L
    1998 22T/20L
    2002 30T/28L
    2006 34T/28L
    2008 43T/34L

    considering surgery in the near future as the curvature is getting progressively worse and for pain management.

    XRAYS and pics at 28 years old. http://www.freewebs.com/skiergirl24/apps/photos/

  • #2
    Hi...

    I'm sorry about your pain, emotionally and physically. The more I read the more I see how we all differ in every aspect and that it's fine. If your curve does get worse, it is usually recommended to have surgery at around 50 degrees.

    I do read a lot of posts where some have a hard time with the hump and how they look. For me, it was the opposite. When my hump was bigger before surgery, I didn't like it but never had a bad comment, and in my mind I tried to not think about it too much b/c it was back there. It's more everr since I've had surgery that I get comments-not about my hump, but mostly my "stiffness" or good posture(as I think it is good) that I get comments that something must be wrong with my back or I must have had surgery, and sometimes I just don't feel like talking about it. Maybe you could see a therapist that specializes in body image issues, if you don't get surgery.

    Take care and good luck to you.
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

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    • #3
      Body casts....

      Hi! You should research about scoliosis as you are NOT in a full body cast for a year. That was years and years ago. I was in a body cast in 1981 for nine months and that isn't the case anymore. The progress with this surgery is amazing and the chance of paralysis is almost remote. If you are suffering this much, you need to see reputable scoliosis surgeon. This is no way to live. I've been there, as well as so many on this site. What state do you live in as I'm sure Linda Racine can suggest a reputable surgeon. There is help out there. Take care of yourself. Lynn
      1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
      2000 Partial Rod Removal
      2001 Right Scapular Resection
      12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
      06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

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      • #4
        Thank you. I'm not 100% sure I will have the surgery. I may look into chiropractic work or something to strengthen my muscles to lessen the curve a tiny bit. But I live in Boston and we have wonderful medical care here so I'm sur eI will have no trouble finding a doctor.

        thanks!
        maura
        28 years old. Dx at age 14.

        1994 20T/20L
        1998 22T/20L
        2002 30T/28L
        2006 34T/28L
        2008 43T/34L

        considering surgery in the near future as the curvature is getting progressively worse and for pain management.

        XRAYS and pics at 28 years old. http://www.freewebs.com/skiergirl24/apps/photos/

        Comment


        • #5
          Hi Maura,

          Welcome to this forum. The comfort of knowing you are not alone in what you're going through is a great thing. I feel that it is an illness that affects us all differently. I have had it since I was 12. I was braced and was always selfconscious about that, of course I was made fun of and teased through school.

          I didn't start to develop my rib hump until my early 30's. So alot of the choices I made regarding clothing and activities revolved around that. I think scoliosis is something that can cause both physical and mental pain. And any kind of pain prolonged over a period of time (years) can definitely send someone into a state of depression. I just want you to know you are not alone!!!

          This is the place to vent all your frustrations, thoughts and questions to a group of peers that will give you support. I think most of us here have shed a few tears over our situation, and you are not a creepy monster!!!

          You're not alone,
          Shari

          Comment


          • #6
            Hi Mobee...

            There are some really great specialists in Boston. Here are the one's whose names I hear a lot:

            John Emans
            Paul Glazer
            Frank Rand

            If you see a specialist and they tell you that surgery is a good option, I'd encourage you to read the book "Scoliosis Surgery The Definitive Patient Reference" by Dave Wolpert. You can purchase the book on the NSF's website.

            Regards,
            Linda
            Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
            ---------------------------------------------------------------------------------------------------------------------------------------------------
            Surgery 2/10/93 A/P fusion T4-L3
            Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

            Comment


            • #7
              Thank you so much everyone. It is nice to know that I am not alone!
              I have an XRAY this afternoon to see how my curve is. I'm in a lot more pain than I ever have been...which leads me to believe that the curve has progressed But, at this point I think I am ready to face surgery...not this year...but perhaps next year. I just started a new job and I'd like to get that under way before I take any time off for surgery! I had major abdominal surgery in 2004 for another chronic illness. Although the surgery was very rough and the recovery painful and long, I am SO glad that I did it. I hope to feel the same way about this...if I do decide to have surgery.

              Maura
              28 years old. Dx at age 14.

              1994 20T/20L
              1998 22T/20L
              2002 30T/28L
              2006 34T/28L
              2008 43T/34L

              considering surgery in the near future as the curvature is getting progressively worse and for pain management.

              XRAYS and pics at 28 years old. http://www.freewebs.com/skiergirl24/apps/photos/

              Comment

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