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  • Help!

    I'm new to the forum, although I've been reading each and every post for the last several months. I'm 41 and I'm contemplating surgery. I'm scared out of my mind, but I'm also scared about doing nothing. My thoracic curve is progressing - now about 70 degrees. I'm having lower back pain every day and many days of pain in upper back as well. You brave souls out there are an inspiration to me. I just don't want to be worse off than I am now. I know this is a common scenario. My pain now is not unbearable, but I'm afraid if I wait too long, I won't be a good candidate for surgery, and I will not have as good of a correction. Any thoughts, anyone? I appreciate any words of wisdom!

  • #2
    That's a pretty big thoracic curve. If it's progressing and if you are advised by a couple of sciolosis specialists to have the surgery, I'd say the younger the better.
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

    Comment


    • #3
      Hi Ash,

      Welcome. I wonder what is it that scares you out of your mind in regards to this surgery. I believe for most it is the fear of the unknown. Here on this forum you will find out answers from those who had the same fears and faced them head on. We are here to help you with all the honesty you can handle! Sometimes too much when it comes to personal hygiene! LOL!

      When I was told surgery was in my future my first emotion was fear and disbelief. I spent hours and hours on this web site. I had all my questions answered and was able to ask my Dr. pertinent questions as my surgery approached. You will find others with a similar curve that can let you know how their recoveries went. We are all different yet we have found many similarities in our recoveries. We will help you through your journey.

      I have my life back at over 1 1/2 years post op. I was getting so bad I was looking forward to my surgery as it approached!

      Best wishes, Suzy


      2/22/06 49* lumbar curve now 8* T10-L4 @Age 43

      Comment


      • #4
        i suggest get it down asap. if you curve has been progressing it wont stop more than likely. its better to get it now then when its too late..

        3 months post op -- and doing ood

        Comment


        • #5
          Hello there, glad you have joined - this was the best place for me when I started to finally deal with my situation.

          I'll second what Chris says, and recommend that you go to see a couple of surgeons who do this surgery (I looked for those on the scoliosis research society list). That would probably be the best first step, if you haven't done so already.

          I had a 55 degree thoracic curve at the time of surgery, and knew it was only going to get worse, since that is all it had been doing for years. Like you, I was having a lot of pain in my lower back, probably because my lumbar curve was getting larger to compensate for my growing thoracic curve. It got to where things like vacuuming would knock me down, sometimes literally to my knees.

          Science says that your curve will progress. I think that with the opinions of multiple skilled surgeons, you can come to a decision that's right for you. I wish you the best - this is the hard part!!
          31 year old female
          55* (day of surgery) thoracic curve w/compensatory lumbar
          T4-T12 on Aug 15, 2007

          MRI, pre-surgery
          Xray, 3 mos. post-op
          Machu Picchu, 8 mos. post-op

          Comment


          • #6
            Hello Ash-

            You are in the right place! you are right about this being a common scenario among us, BUT, our problems, decisions, pain and anxiety levels are not understood by most of the people we deal with. I cannot tell you how valuable this forum has become to me, because the members are the only people in my life who truly comprehend what we go through. So, welcome to the forum! I must agree with you about the age thing. The younger members bounce back faster than we older folks do, but I must say that I am glad I was able to wait until 2007 to take advantage of all of the current research. Those of us past our twenties just know we have to be a little more patient with our recovery. But we can still get great corrections and results. Good Luck with your research and decisions. Lisa
            Lisa age 47
            T curve 69 degrees
            L curve 40 degrees more or less - compensatory
            fused to from T-3 to sacrum
            anterior and posterior surgeries completed June 1, 2007
            pushing hard in recovery !!

            Comment


            • #7
              Hi Ash,
              I think you're in that spot where all of us have been at some point, where there is a decision to be made about surgery. It's pretty frightening to face the prospect of surgery, but for most of us who had pre-op pain we found a significant reduction in this post op. Your curve is about where mine was when I had surgery too. The advice I was given about progression is that it is best to do it prior to the spine becoming 'unbalanced' as in your neck and lumbar spine are out of alignment.
              Get more than one opinion if you can, and talk to some good physical therapists who know about scoliosis and can prepare you for surgery, or help you manage your pain and strengthen your back if you choose not to go that way.
              You'll find lots of support on here, welcome to the exclusive club of people with curves
              1994 curve at age 13, 70 degrees, untreated
              2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
              2007 26 degrees junctional scoliosis
              Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
              msandham.blogspot.com

              Comment


              • #8
                Thank you everyone!

                Thanks so much for all your replies to my first post. I appreciate all the advice. I'm really touched by how many of you responded. It means so much to speak to people who live with scoliosis. I will see Dr. Pashman (in L.A.) on November 2nd - see where my curve is...

                Comment


                • #9
                  Hi Ash,

                  I want to welcome you also!!! We all seem to fear that our first post on here will not be responded to, but that is never the case. I know I was scared to death, not only about the surgery, but to put my feelings out there to a bunch of strangers with the added fear of not being accepted.

                  That will never be the case here!!! None of us can answer every question, but there always seems to be someone that can, or someone that can point you in the right direction. That's what makes this a great place to be!!! We care, and that's all that counts.

                  You will find people here that will search for the answers just to help you. It's a great place to express any fears, concerns or just vent without judgement.

                  I still feel lucky to have found this forum,
                  Shari

                  Comment


                  • #10
                    [QUOTE=Suzy]I wonder what is it that scares you out of your mind in regards to this surgery.

                    Duh??? How ‘bout death, paralysis, pain, massive blood loss, nerve damage, chronic pain, disability, repeated surgeries, and more, all of which have been reported here.

                    Chris

                    Comment


                    • #11
                      Yes Chris, those are all the things that turn my thoughts from "I'm ready to go through this surgery," to ..."Am I crazy!" I'm so afraid I'll be worse off than I am right now - and I'm not too bad off right now. If I were in horrible pain, surgery would be an easy decision - but my pain isn't that bad most days. It would be easy if someone would just tell me that I HAVE to have the surgery - but I don't think that's going to happen. I have a great life and I don't want to ruin the rest of it. On the other hand, if I don't have surgery, my future may be ruined by the progression of the curve. Do I sound like a Psycho?????? I'm so confused. I said before that my curve was 70 degrees, actually I think it was more like 60 the last time I saw a Dr. I guess I'll have to wait for my appointment.
                      Ash

                      Comment


                      • #12
                        Ash, your thoughts are exactly the ones I had before surgery. I stewed about whether or not to have surgery for a year. It's a very tough decision to make and you're 100 percent normal. Take a deep breath, live your life, and try not to think about it too much before your appointment in November. You will have much more clarity AFTER you talk to a specialist.
                        Chris
                        A/P fusion on June 19, 2007 at age 52; T10-L5
                        Pre-op thoracolumbar curve: 70 degrees
                        Post-op curve: 12 degrees
                        Dr. Boachie-adjei, HSS, New York

                        Comment


                        • #13
                          HI ASH

                          i am a forty had my first surgery in march of 07 i was also scared out of my
                          mind but you can't let fear stop you from doin the right thing i think the longer you wait the more the curves will progress.
                          i had my surgery in march of 07 that about 7 month ago i want lie to you
                          some day are good and some bad but i still don't regret that i had the surgery but i do regret that i did not do it sooner.



                          nathan

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                          • #14
                            Ash,

                            I know exactly where you’re coming from. I’ve been hanging around this forum for two years now. I’m 58 with a 75° lumbar curve, but unlike most people here, I did not experience any symptoms whatsoever (other than height loss) until two years ago. Now pain is intermittent. Last week it was so bad that I could barely sit which prompted me to call one of the surgeons I saw in Chicago last year, and I have an appointment next week. This week I feel great. Last night I even went for a brisk 45-minute walk in the cool autumn air and I felt so good. Now I’m back to asking myself “Am I crazy to consider this?” Maybe follow-up x-rays that show further progression will be the deciding factor for me. In addition, next Saturday I’m going to the second meeting of the Chicago Chapter scoliosis support group. The woman hosting had two surgeries earlier this year at age 61. Although she’s relieved to have this all behind her, she’s now experiencing a problem with leaning to the left. I’m looking forward to seeing her again as well as hearing from others about their experiences.

                            Chris

                            Comment


                            • #15
                              Ash,

                              Talk to the people who are supportive. It really helped me to hear my boyfriend and my mother and stepmother tell me they would have made the same decision, after I made the decision to have surgery on my own. It's a big deal, no one denies that, but just committing to doing something proactive is a really good feeling. That said, I agree that you have to just live your life and be happy until you see the specialist and are in a position to make a decision.

                              Good luck.
                              2000 34*L/39*T
                              2007 44*L/53*T

                              12.3.07 Posterior Spinal Fusion T4-T12
                              (initially planned T4-L1)
                              12.18.07 11*L/10*T

                              23 years old

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