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  • progression in adulthood -- surgery?

    I am 26 and my scoliosis has progressed into adulthood. At age 18 my curve was 23 degrees. At age 22 it was 30 degrees. Now I am 26 and I am going for more xrays. If the curve progresses even more what should I do? Already I am in pain and hate the way I look. Is it true that if the curve progresses into adulthood it will generally continue to progress throughout life. Well if that is the case, isn't surgery better to have sooner rather than later? I mean, if the curve is going to get worse, why wait till 50 degrees to operate, why not fix it NOW and prevent it from getting worse?
    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
    I can understand your concern. And from experience, your curve probably will keep getting worse. My spine doctor told me it progresses about 1 degree per year on average. I am 57 and tomorrow I am going to my first appointment with the specialist who will probably operate on me. I have always felt that I would have been at least 2 inches taller had I had surgery back when I was in my teens. But I was told back then that after wearing a brace for 3 years it would not get worse. They were wrong! Then now after all these years, I have lost an additional 3 inches. (Instead of the 5'6 I probably should have been...I am now 5/1.) I will never be stretched out and as tall as I should have been now even after surgery. I would have done something sooner, but I was told no one would touch anyone as old as me. Thank goodness I found out different as I have 78 degree curves and a scary surgery facing me....but at least something can be done to save my heart and lungs. Just my opinion, but if a doctor suggests surgery, I would listen to him, go for another opinion, and then even if you do nothing now, please keep watching your progression and don't let it get too bad. You will have a much easier recovery at your young age.
    Last edited by Marcia; 04-27-2006, 08:04 PM.

    Comment


    • #3
      I agree

      I agree that it will most likely continue to progress as mine did and I don't want to be 60 years old with an 85 degree curve!
      Jenn
      37 y/o female
      60 degree lumbar
      45 degree thoracic
      1st time anterior/posterior surgery May 8th and 10th 2006
      T 5 to S 1
      NYC

      Comment


      • #4
        Thanks guys! My fear is that I will go to the orthopedist and he will say "No I want to wait and see if it gets to a dangerous number." But I don't want to wait. I'd rather get it done and behind me while I am young. Of course, I have not seen the orthopedist yet...waiting on xrays results and then will make appt.

        I'm 5'5 1/2 right now. I imagine after surgery (if and when I have it) I will be 5'8 or so

        Marcia- The docs told me the same thing. It wont get worse! Well another doctor noticed it and told me that YES it could get worse. So I got checked out and YUP! It was worse. 7 degrees worse in just 3 years!!!

        Anyway best of luck to you ladies! Summer - dd you have surgery? How long was your recovery?

        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...

          Most curves under 50 degrees do not continue to progress. It's sort of pointless to guess at what you should do until you have your new xrays. It's possible that your progression from the age of 18 to 22 can be explained by something like late growth.

          If your curve does progress significantly, than surgery may be a good option. However, I would never encourage you to undertake surgery unless there's a good indication that your curve will get to 50 degrees, or if you have a lot of pain. Only you can say how bad your pain is. Scoliosis surgery is a pretty drastic option, and I think you'd end up being very unhappy if you had the surgery when it wasn't really necessary. Many people have surgical pain that never goes away. Trading one pain for another, and a less flexible spine, is something about which you should think long and hard.

          Good luck with your appointment. I'll keep my fingers crossed that your curve hasn't increased, and that your physician can tell you why you're having pain.

          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


          • #6
            progression in adulthood....YES

            I too was told that once I reached adulthood, that my scoliosis would not progress. I am 44 and just 3 years ago my lumbar curve was 27 degrees. A recent comparison x-ray showed it had progressed to 40 degrees. As did the pain and excruciating muscle spasms from neck to waist. And to those who suggest that the "x-ray may not be accurate" because that is unusual......ignore them. Or the "wait and see if it gets worse" crowd....ditto! YOU live in your body, and only you have any idea what is really going on. For 10 years now, my attempt to get help for my scoliosis has fallen on HUNDREDS of deaf and dumb ears....40 degrees may not seem much compared to more severe cases, but my spine also has a rotation and I am literally crippled on my entire left side. So, whenever someone tells me, "they say", I want to know who "they" are, and what qualifies "them"? You know from your own condition that it is not just going to stop or get better......find a Dr. who KNOWS scoliosis and is more concerned about your quality of life than he is in stats on a paper. If you don't feel comfortable with a Dr., move on and find one that you trust. This is a major surgery, and not one to be taken lightly. I think the medical "experts" need to re-visit the scoliosis issue and get up to speed with the facts: Scoliosis does most certainly progress in adults....period. Best wishes to you and stand tall!!

            Comment


            • #7
              I've had backpain due to my scoliosis since I was 16 (I'm 25 now) I've learned to live with the flare ups and the daily discomfort. My major curve is 49 degrees, so I'm basically at a point where I 'qualify' for a fusion. But.. I'm watching and waiting for now, even though I probably can't avoid surgery forever.

              The reason I personally am waiting is because no matter how well the fusion is done... There will be disc degeneration below/above the fusion.

              Well... actually, our discs will degenerate as we age, it's just the natural wear and tear, but with the fusion, because the disc below the fusion ends up taking up all the load of the levels that are fused, it wears out faster. That wear and tear can cause problemes when it comes to it and personally I want to make that hapen later, not sooner. Physiologically, our body is not designed to have a long solid bone for our spine so surgery isn't a magical cure all.

              My surgeon actually told me that if I had gone to a surgeon when I was younger that there was a good chance I'd have gotten surgery than. I'm glad surgery didn't happen and that he's on the conservative side.

              The decision to have surgery or not is all up to you but, do lots of research and give it some time and thought before you make a decision. Make sure your expectations of the surgery and the actual result that can be achieved is ideally on the same line.
              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


              Comment


              • #8
                A few comments.

                Hi Maura, Well, I was 23 degrees and progressed almost 4 degrees PER YEAR for the next seven. 1 degree or less per year is more the norm from all my research and Dr. info. I also found out that once you get to around 50 degrees gravity starts to help pull you over more! I truley feel the sooner the better if you qualify for surgery! (I was 49 degrees, lumbar only, with rotation, corrected to 8 degrees)You are younger ,stronger, heal faster and have less curve to correct so you can get better results. Linda, I have found tons of comments where people who had curves under 50 degrees have progressed. Is there a specific type of scoiosis that stops at less then 50 degrees? As for disc degeneration above and below fusion sites that is not necessarly a given, from what I found out. I went to and talked to many Dr.s and physical therapists reguarding this as it was a major concern for me. They said it's all in how you take care to move correctly and relearn to do things to protect the discs in those areas. I thought about having my Dr. fuse me to S1 just to avoid the possability of a future surgery. He said no way and expained the above to me. He said I may or may not need future surgery, depending on how I take care of my back. To do extra fusion was not something he wanted to do. In fact he kept trying to figure out how to do less and get great results. I am T10 to L4. Another factor was my pain. It started to get so bad (6 months before my surgery) it was affecting my daily activities. I couldn't wait to get it fixed and was thankful there is technology to do it! I am 9 weeks post-op.

                Comment


                • #9
                  Doctors won't advocate surgery until it gets to 45-50 degrees. Not everyone gets a substantial gain in height following surgery, it's usually an inch or two but sometimes there is little change.

                  Comment


                  • #10
                    Question for Linda....

                    I'm curious.........and maybe Linda (or anyone else please feel free) can answer this............ At 12 years old I had back pain all the time. My parents are deceased so I don't know what my inital curve was, but I'm pretty sure it wasn't a very high number when I was initally diagnosed, although I could be wrong. So, my question is... what would have caused the pain all the time at such a young age? I understand why at the time of my surgery as I was 27 years old (62/32 degrees), but as a young child? From what I have been reading, most children and some of the adults do not experience pain. My daughter never, ever had any back pain even when her curve was up to 28 degrees. Just curious...............Thanks! 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)

                    Comment


                    • #11
                      Growing pains?

                      When I was growing up, as a young child (don't know exact age), I remember laying on the floor groaning and crying because my back hurt so much. Seems like this went on for a while. My parents told me that there was nothing wrong with me and that it was normal for children to have growing pains! My scoliosis was not discovered until I was 13 from an x-ray for shoulder pain and today is is T65 L75. My guess is that my back was growing crooked even then, causing spasms of the muscles even in a young child and this may have been the case with you at age 12.

                      Deb

                      Comment


                      • #12
                        Deb - you brought back memories about "growing pains" as that is what my parents would also say until we finally found out what was going on. Makes sense what you said. Having a daughter with scoliosis (although mild), I cannot imagine what my folks must have felt like when really nothing was available compared to the options we have now. Thank God for research and hopefully the procedure will continue to get better and better. I wish you good luck with your back and hope you find what's best for you. 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)

                        Comment


                        • #13
                          To Maura

                          Originally posted by green m&m
                          I've had backpain due to my scoliosis since I was 16 (I'm 25 now) I've learned to live with the flare ups and the daily discomfort. My major curve is 49 degrees, so I'm basically at a point where I 'qualify' for a fusion. But.. I'm watching and waiting for now, even though I probably can't avoid surgery forever.

                          The reason I personally am waiting is because no matter how well the fusion is done... There will be disc degeneration below/above the fusion.

                          Well... actually, our discs will degenerate as we age, it's just the natural wear and tear, but with the fusion, because the disc below the fusion ends up taking up all the load of the levels that are fused, it wears out faster. That wear and tear can cause problemes when it comes to it and personally I want to make that hapen later, not sooner. Physiologically, our body is not designed to have a long solid bone for our spine so surgery isn't a magical cure all.

                          My surgeon actually told me that if I had gone to a surgeon when I was younger that there was a good chance I'd have gotten surgery than. I'm glad surgery didn't happen and that he's on the conservative side.

                          The decision to have surgery or not is all up to you but, do lots of research and give it some time and thought before you make a decision. Make sure your expectations of the surgery and the actual result that can be achieved is ideally on the same line.
                          I agree with this post. You can also get additional surgery for hardware breakage, and pseudarthrosis(failure of fusion). Surgery is not a guarantee that you will be pain free or that you won't get additonal surgery and other fusion related problems, so it's a decision not to be taken lightly. At any rate it's suggested by orthos to get it(and that is when they do it only anyways) when you have a curve that is at least 45 to 50 degrees, and some degree of pain. In that case I highly agree that it's best to get it sooner rather than later, but with the knowledge of all the risks, post op as well.
                          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

                          Comment


                          • #14
                            Thank you everyone. I defiantely do not want to jump into getting the surgery...not at all. If my curve has progressed then yes, I probably will. Right now I am in pain all the time. It sometimes feels like my rib cage is going to burst through my skin

                            I had major surgery for colonic inertia in 2004 and it was a long and difficult recovery. It was a trade off. I feel so much better from having that surgery and my quality of life is a thousand times better. BUt the surgery was rough and recovery long and hard. In the end though, I know I made the right decision. So, I have had surgery before and I know how hard it is on the body!!

                            It's not only the pain that gets me but it also affects me emotionally as well. My self esteem has suffered tremendously. I see a psychiatrist and have a history of depression (have been on meds since I was9). So having the surgery WON'T cure my depression, I know that, but it will take one issue off my mind and relieve me of some unneeded stress! Right now I need to unload as many problems as I can. I have had many chronic health issues and it is hard at the age of 26 to keep on top of everything and not let my mind be corrupted and my self esteem crushed. My goal is my quality of life. If having the surgery has more benefits for me than risks...then that is what I want to do.

                            Thanks everyone!
                            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


                            • #15
                              Maura,

                              Hang in there. I know what it is like to have many chronic health problems... I just found out that I have tumors near my spinal cord some pressing on the cord and tumors elsewhere.

                              It's tough but take a day at a time. It's hard to not think about all the what if's but don't let the possibilities take over the present.
                              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


                              Comment

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