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  • confused....need advice!

    Hello,

    I'm new here, and am kind of at a crossroads at this point in my life with my scoliosis and would really appreciate some input and advice.

    I was diagnosed around 13, after puberty so I was never braced; just monitored. Over the years my upper S-curve progressed from around 38 degrees to around 55 degrees (the lower curve is less, but balances me out well). I'm now 21 years old, and my doctor throughout this still recommends not having surgery, because I'm very balanced and have very little side effects. Just some soreness, which is reduced with excercise, and I have extremely good mobility.

    I am going to get a second opinion, but would really like to get some real experiences from real people. Like, for those who haven't had surgery, how has your scoliosis effected you throughout your life, and would you prefer to have had surgery? And for those who have had surgery, is mobility ever a problem, or do you have more pain than before? Also, I wonder if there are ways that my scoliosis is effecting me that I don't even notice, because it's come on so gradually...

    I'm just really not sure how to make this decision....even advice on how to weigh things out would be appreciated too.

  • #2
    Hi -
    Welcome to the forum. I'm not sure I'm the best example for you, and I wouldn't even venture to tell you what to do, but I can tell you my experience. I'm now 64 years old. I didn't know I had S-curve scoliosis until I was about 22 years old and found out quite by accident during a physical for something else. I was told I was done growing and it wouldn't get any worse so don't worry about it. So I promptly forgot about it. I didn't have any problems with my back throughout my life, except for my family teasing me about one hip being higher than the other. In my mid-40s I had a packing/shipping business that was very physically demanding and that's when I started having back pain. (By the way, except during high school, I was not very athletic, and I never had children, two things which might have some impact on your scoliosis.) My pain got progressively worse over the years and I tried everything to relieve it - exercise, PT, massage, etc., until I finally saw an orthopedic surgeon who recommended surgery. I am now recuperating from my third back surgery in seven years. I don't know if I am in any way typical; probably not. But I'm sure others on this forum can weigh in with their experiences.

    The only bits of advice I can give you is to educate yourself about scoliosis as much as you can, to seek as many opinions as you feel comfortable with, and to not rush into a decision. Good luck to you.
    FeliciaFeliciaFelicia
    10/24/00 posterior fusion T4-L4 at age 57
    8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
    5/14/07 posterior revision with fusion to sacrum
    2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
    3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

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    • #3
      hi

      i, too have scoliosis, somewhere around 20' upper and lower... I didn't find out until i was 18 so we never did anything.. I have had 2 kids-- and am a runner, doind 4 marathons so far... I experience some back issues, during pregnancy I had a few pains more than normal.. HOwever, I'm a huge pro-ponnet (sp?) of physical therapies and muscle development.. my daughter has 39'and 49' curves- and is using a cheneau brace and attempting some Schroth methods ... I wouldn't rush into surgery !! obvioulsy, I'm not and my daughter won't.
      hope it helps..

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      • #4
        I'm the watchful waiting mode, though my surgeon indicated that I will eventually need surgery. I plan on waiting as long as possible, but not too long.

        I've had pain issues since I was 16 gets pretty bad at times but I don't think it's to the point where surgery benefits outweights living with the pain.
        30 something y.o.

        2003 - T45, L???
        2005 - T50, L31
        bunch of measurements between...

        2011 - T60, L32
        2013 - T68, L?

        Posterior Fusion Sept 2014 -- T3 - L3
        Post - op curve ~35


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        • #5
          yeah...i've been just watching and waiting for a long time now and am just wondering if now is maybe the time. It seems like having surgery later would be a lot harder with less results. My doctor suggested that at that point it would be more of 'correcting the pain' sort of surgery, rather than correcting the scoliosis...

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          • #6
            another question...

            I was just wondering if there was anyone whos curves didn't significantly increase with age. My doctor says my back has been stable for the past 2-3 years, but it doesn't seem like that necessarily means it will not get worse.

            I think I'm just sort of leaning towards having the surgery now when I'm younger and can more correction and recover faster. Oooh, so hard to decide!

            Thank you so much for your replies and help. I'm so glad I found this forum

            Comment


            • #7
              Hi

              I too was diagnosed with scoliosis at 13. At age 16, I had an 18 degree curve and I was told I was done growing. About 4 years later I was having horrible pain so I went to an orthopedic surgeon. My curve had progressed to 33 degrees. 2 years later it was 37 degrees. Last year 44 and this year 47. My doctor recommended that I have surgery done within the next 2 years. I'm most likely going to have it done next May. He's estimating the my curve will be about 55 degrees by then. He said the sooner I have the surgery the better because he'll be able to get my curve down to 10-20 degrees. He thought waiting until I was older was a bad idea because I may end up being severely disabled in 15-20 years and surgery would not help me all that much. He also said my quality of life will increase. I'm really scared, but also looking forward to having less pain and being straight! Good luck!
              Chemist, 30

              1998- 18 degrees
              2003- 33 degrees
              2005- 37 degrees
              2006- 44 degrees
              May 2007- 47 degrees
              December 2007 - 50 degrees X-ray

              Surgery May 27, 2008
              Fused T1 to L2
              Curve corrected to 15 degrees X-ray

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              • #8
                Hey,

                I'm 26 and have had was diagnosed at 14. I don't know the degree of my curve but it causes me chronic pain, which in the past has controled my life. It has also caused muscle tearing in my shoulder and a new recent problem with my shoulder blade. However, i have been advised not to have surgery and i really do not want surgery. I have joined a gym and do stability ball exercise and yoga along with swimming. I allow myself to rest when the pain is bad and i limit the amount of pain killers i take to prevent further damage.
                If you have little pain and your condition isn't affecting you too much then i would avoid surgery for now. However, don't let your scoliosis start to control you. Explore all your options and stay positive!

                Good luck!
                Last edited by adelonty; 06-23-2007, 03:34 AM. Reason: wrong age

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                • #9
                  Jenae,

                  Surgery is extremely invasive, that is, it makes a large, permanent, irreversible change in your skeletal system. It is very expensive, and it does not solve the real problem. Your body will still try to twist abnormally. Surgery may help if you're lucky.

                  But.... if you're not so lucky, you may need one surgery after another, none of which solves the underlying issues. There is a whole section on "Surgical (Revision)" in this forum. Just read some of the testimonies by people who have had three, four or more surgeries and are still in pain. It's heartbreaking.

                  Think of surgery as a last resort. Before you go that route, investigate thoroughly the alternative therapies, particularly Schroth. You will read about a number of them on this forum.
                  Last edited by Writer; 06-25-2007, 05:39 PM.

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                  • #10
                    Heartbreaking, indeed! I just clicked on the name of one of today’s birthday celebrants only to see yet another person who is disabled in spite of A/P fusion. The unfortunate truth though is there is NO alternative therapy that stops a progressing curve.

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                    • #11
                      Let me respond with references to scientific research. Since 1941 scoliosis researchers in the Anglo-American world have thought that nothing short of surgical spinal fusion could be done to stop a scoliotic curve. However, Dr. Martha Hawes has recently shown in her book Scoliosis and the Human Spine (listed on the Store page at scoliosis.org) that this train of thought has no scientific basis. The 1941 study was seriously flawed.

                      On the positive side, there is a growing body of evidence that a properly designed physiotherapeutic program can not only stop progression of an abnormal spinal curvature and prevent surgery, but in many cases even reverse the curve. A study by Hans-Rudolf Weiss, M.D. (director of the Asklepios Katharina Schroth clinic in Germany) and others published in Pediatric Rehabilitation magazine in 1997 reported that the usual relative progression of the scoliotic curve was not found in a sample group of 181 physical therapy patients of the Schroth Clinic. For an abstract, see:

                      http://www.ncbi.nlm.nih.gov/sites/en...RVAbstractPlus

                      Weiss reporting similar findings in an earlier study in 1993. That one is available on Weiss’s website:

                      http://www.scoliosisxpert.com/daten/...ine1993EMG.pdf

                      The Schroth method is currently the best-documented conservative treatment of scoliosis, but it is not the only one. Reports on several methods were given at the recent SOSORT conference in Boston, sponsored by Joe O’Brien and the National Scoliosis Foundation.

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                      • #12
                        I also attended the Sosort Conference for the Conservative Scoliosis managment. I am a Schroth Certified Physiotherapist in the San Francisco Bay Area and I would like to heard from you.

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                        • #13
                          I decided to just wait on the surgery for now and just keep up with good exercising to maintain my flexibility. I'm just not in any pain or anything so I really don't see the reason do to that at this point. I am really interested in the Schroth method, though. Does it still help even if you have a high degree of curvature?

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