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  • #16
    Originally posted by Pooka1 View Post
    Actually of the structural lumbars, aren't most of them left? Most thoracic curves are right.
    That may be correct, I don't know. BUT, if he "sees" a right thoracic of any significant degree, he may assume it came first. I fully expect my compensatory curve to bypass my structural curve in a matter of a couple of years, if it hasn't already. Diane's may just well do the same thing making it "look" like the first curve. It has already increased significantly since her first diagnosis and her early records are missing I'm guessing?
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

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    • #17
      Originally posted by KathK View Post
      Hi,
      My understanding matches Sharon's. I thought I had read that the majority of structural lumbar curves were to the left. I believe that the majority of structural thoracic and thoracolumbar curves are to the right.

      When I had finished growing in my teen years, my right thoracolumbar curve had measured at 40 degrees. At 43 years of age, when I saw a surgeon, he said I had a 70 degree right lumbar curve. I was surprised to have my curve labelled as lumbar. (The apex of my curve had lowered, so technically, he might have been right.) But, when I consulted with Dr Lenke and he called me out immediately as a right thoracolumbar, I knew he was the surgeon for me! :-).

      I hope you can get your questions resolved. I, too, would want a clear and consistent understanding of which curve was structural and which was compensatory.

      Kathy
      Hi Kathy,

      I hope I get my questions answered and find a surgeon I'm totally comfortable with. Perhaps Dr. DeWald will be that surgeon. As Sharon mentioned earlier, my early records are gone, non-existent. BUT...I know I had a lumbar curve. I was told to go on and live my life after I finished growing. My poor mother, who is in her eighties, feels guilty that I didn't keep seeing an orthopedic doctor but for many years there was no need. Now, however, I have almost daily pain and it is becoming very tiresome. I love to cook but if I'm on my feet all day and then try cooking for several more hours my back will be in screaming pain.

      I noticed that your lumbar is fused to the pelvis. Do you mind if I ask how you feel about that? Loss of flexibility worries me no end. I'm very active and would like to continue to be so (although pain seems to be taking a big chunk out of my ability to stay active.) Sometimes I feel like I'm in a no win situation.

      Diane

      Comment


      • #18
        Hi Diane,

        My heart goes out to you. I know what you mean by feeling like you're in a "no win" situation. In my experience, you are truly in the toughest part of the journey right now! Trying to find the right surgeon and trying to understand the the different surgical approaches that are proposed is very stressful. But, I do believe that finding the right surgeon is of the utmost importance. So, keep questioning, keep consulting and keep researching until you know in your gut that you have found the right surgeon for you.

        I had to accept the fact that I will never have a normal spine. As Sharon says, "it's off the table". My choices were life with a deformed spine that would, most likely, continue to become more deformed or life with a fused spine. The first choice (deformed spine) we all know very well, but the second choice (fused spine) is an unknown to us. So, of course, we question what life "in a fused spine" will be like. I will try to relay my experience to you.

        I do not feel greatly limited by my fusion, even though it extends to the sacrum. I work full time, parent full time :-), and travel frequently (even to Europe). Yes, there are activities I chose to no longer do (run, ride roller coasters, lift heavy items), but I don't feel a sense of loss over those activities. The one thing I do miss is yoga. But, I can do most everything I want to do in my daily life. If I pick something up off of the floor, I do lower down on one knee and lean forward to pick it up instead of bending completely over. That would probably be the only time I would appear different than others. I do not have pain.

        I used to wonder if I would EVER have a day where I didn't think about my back, but I have now HAD those days!

        Please PM me if you have specific questions about activities. I will definitely try to answer!

        Keep up the good work!
        Kathy
        Kathy
        46 yrs at surgery, now 50
        71 degree thoracolumbar curve corrected to 34 degrees
        8/2/2010 surgery with Dr. Lenke

        posterior T9 to sacrum with pelvic fixation

        4 osteotomies and 1 cage
        http://s1066.photobucket.com/albums/...athK_08022010/

        Comment


        • #19
          Ditto to what Kathy said. I totally agree with everything she said.
          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


          • #20
            Originally posted by KathK View Post
            Hi Diane,

            My heart goes out to you. I know what you mean by feeling like you're in a "no win" situation. In my experience, you are truly in the toughest part of the journey right now! Trying to find the right surgeon and trying to understand the the different surgical approaches that are proposed is very stressful. But, I do believe that finding the right surgeon is of the utmost importance. So, keep questioning, keep consulting and keep researching until you know in your gut that you have found the right surgeon for you.

            I had to accept the fact that I will never have a normal spine. As Sharon says, "it's off the table". My choices were life with a deformed spine that would, most likely, continue to become more deformed or life with a fused spine. The first choice (deformed spine) we all know very well, but the second choice (fused spine) is an unknown to us. So, of course, we question what life "in a fused spine" will be like. I will try to relay my experience to you.

            I do not feel greatly limited by my fusion, even though it extends to the sacrum. I work full time, parent full time :-), and travel frequently (even to Europe). Yes, there are activities I chose to no longer do (run, ride roller coasters, lift heavy items), but I don't feel a sense of loss over those activities. The one thing I do miss is yoga. But, I can do most everything I want to do in my daily life. If I pick something up off of the floor, I do lower down on one knee and lean forward to pick it up instead of bending completely over. That would probably be the only time I would appear different than others. I do not have pain.

            I used to wonder if I would EVER have a day where I didn't think about my back, but I have now HAD those days!

            Please PM me if you have specific questions about activities. I will definitely try to answer!

            Keep up the good work!
            Kathy
            Hi Kathy,

            Thanks for the reply. I love to read that you do not have pain!! Today is a big time pain day for me. It's cold and rainy in Chicago and my back is killing me! I would love a day when I don't think about my back. As far as fusion is concerned, I'm starting to feel it couldn't be any worse then the pain I'm in today; and I have a high pain tolerance like most people on this forum.

            I know Sharon says normal is "off the table" and I know this to be true but I'm having a hard time accepting it. When I told my brother about the surgery the first thing he said to me was I would probably be eligible for disability. I have never thought of myself as disabled and refuse to view myself in those terms. I know he meant well but hearing those words hit me hard. Having said this, I'm always happy to hear others who have had the surgery are doing well and living full, productive lives.

            Diane

            Comment


            • #21
              Most people do not understand scoliosis surgery and how it can improve one's condition. Very few of us who have had surgery are "disabled". The word I hated and never used about myself was "deformed". Obviously, I was deformed but it was hard to admit. I now have a nice, straight back with no rib hump and no pain and I am not deformed or disabled. It definitely took well over a year and probably closer to two years before I could say that I had no minor aches. Surgery was one of the best decisions that I've ever made.
              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


              • #22
                Originally posted by golfnut View Post
                Most people do not understand scoliosis surgery and how it can improve one's condition. Very few of us who have had surgery are "disabled". The word I hated and never used about myself was "deformed". Obviously, I was deformed but it was hard to admit. I now have a nice, straight back with no rib hump and no pain and I am not deformed or disabled. It definitely took well over a year and probably closer to two years before I could say that I had no minor aches. Surgery was one of the best decisions that I've ever made.
                Karen,

                I have seen your photos and you look great! I never felt deformed until recently. Actually, I thought it was just middle age making my waist look wider and my back larger. Turns out my curves were progressing and THAT is making me look this way. The last surgeon I saw said I would probably be 3 inches taller after surgery. Most people don't know I even have scoliosis. My curves are pretty evenly balanced. However, if you saw my bare back there would be no question. One thing that is bothering me is this permanent bruise/skin discoloration that I now have on my back. Have you ever read anything about this type of problem? Maybe I should start a new thread.

                Diane

                Comment


                • #23
                  Originally posted by golfnut View Post
                  Most people do not understand scoliosis surgery and how it can improve one's condition. Very few of us who have had surgery are "disabled". The word I hated and never used about myself was "deformed". Obviously, I was deformed but it was hard to admit. I now have a nice, straight back with no rib hump and no pain and I am not deformed or disabled. It definitely took well over a year and probably closer to two years before I could say that I had no minor aches. Surgery was one of the best decisions that I've ever made.
                  Karen,

                  My favorite part of your golf swing video is the part where you reach down to pick up your tee! Your back looks beautiful.

                  Diane

                  Comment


                  • #24
                    Originally posted by danicaf View Post
                    Karen,

                    I have seen your photos and you look great! I never felt deformed until recently. Actually, I thought it was just middle age making my waist look wider and my back larger. Turns out my curves were progressing and THAT is making me look this way. The last surgeon I saw said I would probably be 3 inches taller after surgery. Most people don't know I even have scoliosis. My curves are pretty evenly balanced. However, if you saw my bare back there would be no question. One thing that is bothering me is this permanent bruise/skin discoloration that I now have on my back. Have you ever read anything about this type of problem? Maybe I should start a new thread.

                    Diane
                    Hi Diane...

                    I don't recall ever seeing a discoloration or bruise on someone who hadn't been injured. Where is it?

                    --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


                    • #25
                      Originally posted by LindaRacine View Post
                      Hi Diane...

                      I don't recall ever seeing a discoloration or bruise on someone who hadn't been injured. Where is it?

                      --Linda
                      Hi Linda,

                      Mid back, right hand side of my spine. My Internist told me it was simple skin discoloration, due to age???? I'm 55 and have had it for about a year. I thought perhaps it was due to the scoliosis and the shape of my back.

                      Diane

                      Comment


                      • #26
                        Originally posted by LindaRacine View Post
                        Hi Diane...

                        I don't recall ever seeing a discoloration or bruise on someone who hadn't been injured. Where is it?

                        --Linda
                        Linda,

                        I should also add that the physical therapist I was seeing was the first person to notice the discoloration and she felt it looked like a bruise, which it does. I don't know why my doctor dismissed it so casually. It doesn't hurt. I just wish I knew why it was there.

                        Diane

                        Comment


                        • #27
                          Regarding the spot on your back, could it be from where your back hits the chair? Prior to my surgery, my back was getting so deformed that certain spots would really grate against the backs of chairs. That could cause bruising over time, depending on where/how much you sit.

                          Regarding structural curves, I had a structural lumber curve and compensatory thoracic. I had both fused even though my thoracic would straighten with bending films. The reason was the surgeons felt I would look unbalanced following surgery if I didn't. Also, my compensatory was 45 degrees and I was 40, so there was no guarantee it would straighten on its own.

                          I saw six surgeons before I decided to have surgery. It's always good to continue to get advice until you have all of your questions answered.
                          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


                          • #28
                            Originally posted by Confusedmom View Post
                            Regarding the spot on your back, could it be from where your back hits the chair? Prior to my surgery, my back was getting so deformed that certain spots would really grate against the backs of chairs. That could cause bruising over time, depending on where/how much you sit.

                            Regarding structural curves, I had a structural lumber curve and compensatory thoracic. I had both fused even though my thoracic would straighten with bending films. The reason was the surgeons felt I would look unbalanced following surgery if I didn't. Also, my compensatory was 45 degrees and I was 40, so there was no guarantee it would straighten on its own.

                            I saw six surgeons before I decided to have surgery. It's always good to continue to get advice until you have all of your questions answered.
                            I do spend quite a lot of time in the car. When I sit at home I tend to sit at the edge of the seat...comes with being short and that is the only way I feel comfortable sitting. Also, if I'm sitting at home watching TV I always have a pillow behind my back. I notice when I'm driving that I'm now sitting twisted with my hips on an angle. When I notice that I'm doing this I straighten myself out. I think the bruise is from where my back hits the drivers seat and since my back is no longer flat I'm sporting a lovely bruise.

                            I am going for a third opinion, as soon as our new insurance goes into effect.

                            Comment


                            • #29
                              I've seen some huge rib humps, but have never seen a corresponding bruise, or hear any surgeon mention one. Also, it seems to me that if you were traumatizing the tissue enough to cause a constant bruise, it would be painful to the touch.

                              --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


                              • #30
                                Originally posted by LindaRacine View Post
                                I've seen some huge rib humps, but have never seen a corresponding bruise, or hear any surgeon mention one. Also, it seems to me that if you were traumatizing the tissue enough to cause a constant bruise, it would be painful to the touch.

                                --Linda
                                There is no pain by the "bruised" area. The discoloration isn't brown, it is dark.

                                Comment

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