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    Hi all,
    I am new to this site. I wish I would have discovered it sooner. It seems it may be very supportive. I am 19 years old. I had surgery in 1998 when I was 12 years old. At the time of surgery my spinal curvature had already increased to 78 degrees. I have 2 rods and a fusion. My doctor (whom I trust very much, he's incredible) wanted to hold off on surgery until I had hit puberty but my curvature was increasing so rapidly that we were almost forced into surgery so early. After surgery I felt great. I never had any pain until about 2 years ago. I started to experience pain in my lower back only. It increasing got worse and soon I was experiencing a sharp stabbing pain in my upper back as well. I have been to physical therapy, a chiropractor, and also visited a pain specialist. Maybe I am just hard headed but I feel that I am too young to be put on pain medication. I am a student and I need (and want) to be in my right mind all the time. However, the pain has become so bad that it travels down my legs and at points I feel as though I am going to collapse. Laying in bed and sitting delivers no relief for me. Sitting sometimes makes it worse. I was scheduled to have a revisional surgery last February but my doctor admitted to me that he had a bad feeling in his gut about the surgery. This is when he sent me to another doctor for a second opinion whom directed me toward the pain specialist and chiropractor.

    So I was curious to hear of others opinions who have had a revision surgery and if anyone has any recommendations for me?

    Thanks,
    Kasie

  • #2
    Hi Kasie...

    I can't urge you enough to try to find a specialist who has a lot of experience treating people with prior fusions. Where are you located?

    --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


    • #3
      Hi Linda,

      I live in New York and I have been visiting a pediatric specialist in Syracuse since I was diagnosed. He has been incredible. But now I almost need to find an adult specialist to carry out the rest of my care. I got to school in Buffalo and I noticed that there are a few specialists out there. Any recommendations?

      Thanks

      Comment


      • #4
        Hi Kasie...

        I don't know of anyone up near you, but Dr. Boachie in NYC is about as good as it gets. You can do a search of his name here in the forums to read comments from many of his patients.

        Best of luck!

        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


        • #5
          Hi. I had my fusion on 2-1-05 and had pain from the day that I had surgery. I thought over time it would go away but it never did. It was a sharp pain in my thoracic area between my spine and right scap. It hurt for me to breathe and to raise my right arm above my head. Unfortuntly I ended up having the right rod removed on 12-15-05, but am doing much better since then. Have they done x rays to examine the rods themselves? I have heard of lots of rods breaking and causing pain. I dont know of any surgeons in the NY area. I hope you are able to get some pain relief, I know it can be hard and discouraging. I too am a student and hated going to school during the time between surgeries and not having relief. Good Luck.
          Mandy

          Comment


          • #6
            Did they have much trouble removing the rod? I was supposed to have surgery in Feb. 2004 but the doctor felt there were more risks than benefits in having the surgery. He said that my bones had fused and healed so well that it would be extrememly difficult to remove the rods. Now I realize that my rods have been in for years and yours just a few months but was it difficult at all for you to have it removed?

            Thanks for your support

            Comment


            • #7
              Private Message

              Kasie, I sent you a private message.......... 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


              • #8
                Hi Kasie...

                I've known people who've had their rods removed more than 20 years after implantation. Most people say that rod removal surgery was a piece of cake. Unfortunately, I'm guessing that you need more than just to have the rod(s) removed.

                --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


                • #9
                  Hey,
                  I'm sorry I'm unsure how to read my private message. Could ya help me out?
                  Thanks!

                  Comment


                  • #10
                    Hi Linda,

                    From what my doctor says, he feels that the removal of the rods if the most risky part of surgery. He says that I healed so well and that the fusion is completely solid around the bone. Of the people you know who have had rods removed, do you know if they had bone growth around the rods?

                    Comment


                    • #11
                      Hi Kasie...

                      I'm not sure if there's any real way of determining whether the rods are encased until they get in, but I've known several people who had to have fusion chipped away to remove the rods, and I think I've only heard of one person who thought that rod removal WASN'T a piece of cake.

                      --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


                      • #12
                        Retriving a Private Message

                        Kasie - go to the top right corner of the screen where it has "Welcome" and then your screen name. Click on Private Message and you'll see it's in there - click on it and it will open. 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
                          Kasie

                          I had my rod removed in 2001. My rod was actually moving in my back. The X-rays and CT really didn't show the extent of the problem. The surgeon was really surprised at the extent of the damage after I was in surgery.

                          I don't know if this is helpful information, but I would have had my rod removed sooner, had I known what was really happening.

                          Best wishes.

                          Comment


                          • #14
                            Hi Summer...

                            First, you need to go to the forum starting page. For example:

                            http://www.scoliosis.org/forum/forumdisplay.php?f=68

                            Then, click on the New Thread icon.

                            --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

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