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  • Need some reassurance

    Hi Everyone,

    My surgery is in just about 7 weeks, and I'm beginning to panick. I'm actually becoming somewhat at peace with the surgery itself and feel more prepared in a sense for the recovery and the pain, etc, but I'm panicked about whether or not this is the right decision for me.

    I've read on this forum that people second guess the decision all the way to the OR, but does anyone have any advice, word of wisdom or can tell me how they dealt with this feeling? I find that I'm having trouble sleeping and finding that I don't really want to talk to people about the surgery. I keep feeling like people don't understand and give me looks of pity, and it just makes the feelings I'm having worse.

    By the way, my curves are at about 46 thoracic and the lumbar is compensatory in the mid 30's. I have some pain from muscle pushing and pulling and overall feel crooked, but I have lived a normal life. I have decided to do surgery based on my curve worsening at about 1 degree per year since skeletal maturity, and wanting to stop it before it worsens.

    Any advice is very much appreciated.

    Thanks everyone,
    Jamie

  • #2
    Well, I think with that solid evidence case for progression, the case for surgery now is mainly to minimize the number of levels involved by doing it as soon as possible. If you wait, perhaps you would need a much longer fusion, especially into the lumbar.

    It haunts me to think my daughters might have shorter fusions had they been fused earlier. They each have 10 levels fused.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

    Comment


    • #3
      Jamie, from everything I know, you're doing the right thing. Clearly, your curve is progressing and you know it will continue progressing, so logic will tell you that the sooner surgery's done, the better. By doing so, you're saving yourself a lot of crookedness, pain and worry into the future. And the younger you are, the easier the recovery, and you're not going to get any younger. If you had the surgery later, your surgeon would have a bigger task on his hands, and you may not get as good a correction so it seems to me that having surgery now is the right thing to do.

      Your surgeon obviously feels it's necessary or he wouldn't be doing it. I think we all have these backwards glances and wonder if we're doing the right thing. I would say this is perfectly normal, when facing spinal surgery.

      I know I'm not saying anything you don't already know, but hopefully reading it again will help.
      Surgery March 3, 2009 at almost 58, now 63.
      Dr. Askin, Brisbane, Australia
      T4-Pelvis, Posterior only
      Osteotomies and Laminectomies
      Was 68 degrees, now 22 and pain free

      Comment


      • #4
        I think we all second guessed ourselves many times. YLou have to learn to ignore some of the comments. I know my mom thought it was totally wrong up until the end and I just had to ignore it. I actually wished I had done it sooner since recovery gets harder and longer with age. I actually had a relaxation tape for healing--Peggy Huddleston-- I listened to the last few weeks. It sort of centered me with a mind-set on positive outcomes & forced worry away for a while. There's probably some threads about her book and tapes on here. Good luck and have faith in your decision. Janet
        Janet

        61 years old--57 for surgery

        Diagnosed in 1965 at age of 13--no brace
        Thoracic Curve: 96 degrees to 35 degrees
        Lumbar Curve: 63 degrees to 5 degrees
        Surgery with Dr. Lenke in St. Louis--March 30, 2009
        T-2 to Pelvis, and hopefully all posterior procedure.

        All was posterior along with 2 cages and 6 osteotomies.

        Comment


        • #5
          Well I am already emotional tonight, but am so overwhelmed by the kindness and support on this forum. I truly appreciate your heartfelt responses. They really do help me a lot.

          Thank you again ladies

          Comment


          • #6
            Hi JamieAnn-

            I absolutley think you are making the right decision. I am assuming you are young like me. If I remember, you are in your late 20's? Everyone gave me weird looks too when I told them I was getting major back surgery. I was extremely crooked before my surgery 8 weeks ago, but I guess I hid it well since everyone told me they couldn't tell I had 2 humps on my back. I always wore larger shirts to hide my body. I always tried to be careful how I bent forward in front of people. To be honest, I felt really awkward within my own body. My own parents didn't think I should go for the operation since my grandma lived to 83 years old. THey told me (even with her 100 degree double curvature) that if she lived like that, I could! I couldn't believe that came out of their mouths. Throughout this entire process, I realize that none of my friends or family truly understand, even my husband. You just have to be strong within yourself. You made the decision, now just follow through with it. I exercised ALOT aerobically before my surgery so that helped with my anxiety about the surgery. I was also having trouble sleeping about a month towards the surgery. But then it got better because I just told myself I am doing the right thing. You just need to be confident about it. I also want to tell you, no one could have been more scared about the surgery then myself!!! I wanted to do this at 20 years old, and it took me 11 years to take the plunge. I was scared to death of the operation. But trust me, once they put the "happy juice" in your IV, you'll never know what hit you. You just wake up in ICU. It wasn't that bad as they really control the pain.

            Even though I am still having neck issues and still in pain now at 8 weeks post-op, I would still recommend the surgery. The pain gets easier to deal with every week.

            I am having SO much fun clothes shopping! I now wear a size small thanks to the surgery! My confidence and self-esteem has really sky-rocketed! All I ever wanted to have for the past 15 years was have a straight back, and it feels good. It's just a shame I have to have 2 long rods in my back! THe rods and hardware feel very strange and different, I think it just takes a year or so to get used to. I am still walking a bit strange, but I hear this will go away too in time.

            Anyway, enough of my rambling. Best of luck to you and I'll be thinking of you on 9/28. If it wasn't for this forum, I probably wouldn't have had the surgery because I didn't have the support at home for it. THere are a bunch of GREAT people on here and I love to read everyone's posts everyday.

            Keep posting as your date gets close. The people on here will help you to get through your last minute anxiety.

            Take care,
            JenM
            Surgery date: June 8, 2010 with Dr. Boachie
            Thoracic curve: 55 degrees, corrected to 25 degrees
            Lumbar curve: 58 degrees, corrected to 27 degrees
            Posterior-only surgery, Levels T3-L3
            31 year old mother of 2 young kids

            Comment


            • #7
              Thanks so much Jen. I am so happy to hear you don't regret the surgery even after the neck and walking issues. And its so nice to hear how much you're enjoying clothes shopping!

              That's the thing about me - I've never really felt insecure about my curves because they're not too noticable. Just within the last few years I could tell my ribs are twisting a bit more but I know I would eventually be more self conscious as this worsens. I have always felt crooked though. I can definitely see the curves but no one else can.

              I just can't help but feel like my case isn't "bad enough" especially since I'm not in a huge amount of pain. I felt it was the right thing to do for a good future but some recent comments on this forum have made me second guess myself.

              Anyway, thank you again for your very kind words.

              -Jamie

              Comment


              • #8
                Jen,
                My parents felt the same way. My Aunt has scoliosis and never had surgery and is 60 now. I really wish they had me do it at 15 when the DR suggested it. It took me 20 years to take finally decide to do it for myself as the curve and pain progressed. People also looked at me like I was crazy to put myself through this. I am not sure what other choice I had as I have tried exercise, injections and chiropractic and nothing seemed to help. Good luck with your decision.
                You should do great if it is what you want to do Jaime. You are young and your curve is not too severe yet.
                Janet
                Last edited by jsully; 08-09-2010, 07:58 AM.
                36 year young cardiac RN
                old curve C 29, T 70, L 50
                new curve C 7, T 23, L 20
                Surgery June 11, UCH, Dr. Cronen T2-L5, posterior
                Revision December 20 L5-S1 with pelvic fixation
                and Osteotomy to L3 at Tampa General Hospital

                Comment


                • #9
                  My curve was progressing at one degree per month. While initially it was not an easy decision, once it was made, i never looked back. If i could go back in time and had to make the decision again, i would still go through with it. My pain and progression has now stopped and i can move on with my life. JA, i think you have made the right decision, however, if you feel like this, maybe another chat with your surgeon may help to put any fears etc aside. I wish you well.
                  Vali
                  44 years young! now 45
                  Surgery - June 1st, 2009
                  Dr David Hall - Adelaide Spine Clinic
                  St. Andrews Hospital, Adelaide, South Australia
                  Pre-op curve - 58 degree lumbar
                  Post -op - 5 degrees
                  T11 - S1 Posterior
                  L4/5 - L5/S1 Anterior Fusion

                  Comment


                  • #10
                    Hi Jamie -

                    I am joining the chorus of those here who are in agreement that you are making the right decision about proceeding with surgery.

                    Prior to surgery I was in a lot of pain and could not sleep - it was hard to get comfortable and I would awaken after only 2 hours with pain and from that point on never really fell back into a deep sleep.....I considered it merely resting... I became sleep deprived and began having memory issues (as well as other things) and I was incredibly emotional - I was just sooo tired! (My husband advised me to double up on my vitamin B when I began crying watching Andy Griffith reruns! ) Maybe you are also a bit over-emotional due to your sleep issues?

                    As for the people in your life who are critical of your decision, keep in mind that they are concerned for you and that's a good thing. Spine surgery is a serious surgery and they are reacting to that, and also acting from a place of ignorance. I don't mean that in a bad way, just that most of us on here know more than the average person about scoliosis, AND the fact that we are living with it gives us a unique perspective. Only YOU can know what is best for you. Have faith in your decision and in your surgeon.

                    By doing this surgery now you have eliminated the years of potential debilitating pain AND your fusion will be shorter and your recovery time shorter as well due to your younger age. Those are all HUGE things to go into your PLUS column!
                    Julie - 51 yrs old

                    Dx'd 1973 - 43* thoracic curve / rotation
                    Wore Milwaukee brace 1973 - 1979
                    Pre-surgery: 63* thoracic / 52* lumbar curves


                    Surgeries: P - March 16, 2009 - Fused T3-S2 with pelvic fixation
                    A -April 14, 2009 - Fused L5-S1
                    Achieved +70% Correction
                    Dr. Khaled Kebaish, (and team) Johns Hopkins Hospital, Baltimore


                    Standing x-ray
                    New Spine 03/19/2009
                    New Spine Lateral 03/19/2009

                    Comment


                    • #11
                      Hi Jamie,

                      I'm in agreement with the others. No one can know when the time is absolutely right for this surgery. There are so many comments about this on the forum because the anxiety is overwhelming as the date approaches. I too am starting to question my decision now that my surgery is about 8 weeks away. So when I start to doubt myself, I think about how I used to look and feel 20 years ago when I had no pain at all and my hump was hardly noticeable. Now at the age of 50 I realize that my spine and deformity are getting worse and will continue to get worse, and I might have other co-morbidities at an older age that will make the surgery/recovery more difficult, or maybe even impossible. So Jamie if you are healthy and have support at home, you're comfortable with your surgeon and everything else is falling into place, then you should feel good about your decision.
                      Laurie
                      Age 57
                      Posterior fusion w/thoracoplasty T2-L3 Oct 1, 2010
                      Thoracic curve corrected from 61* to 16*
                      Lumbar curve, unknown measurement
                      Disfiguring back hump GONE!!
                      Dr Munish Gupta
                      UC Davis Medical Center, Sacramento, CA

                      Comment


                      • #12
                        Well, I have to say you have all helped me tremendously in feeling more confident that surgery is the way to go. I think the negative comments and results on this forum become really the only thing we think of when feeling stressed. But I do notice how many of you have positive outcomes and do not actually regret surgery.

                        Thank you very much for your encouraging words. I will keep you posted on my journey!

                        -Jamie

                        Comment


                        • #13
                          Hi Jamie,

                          If anyone goes into this surgery without fears and concerns, they can't be normal. I think if we all had some kind of cancer, we might be better understood, but it seems that unless you have any kind of "spinal-osis" or know someone who does, this surgery is hard to explain.

                          Believe in yourself and your strength. When you get overwhelmed by emotions, get on here and type it out. You never know who's reading what you have to say, and feeling they're not alone!!!!

                          I believe that most of us have suffered the pain in silence. And it's great to have somewhere to vent, with people that understand.

                          Shari

                          Comment


                          • #14
                            Originally posted by Shari View Post
                            I believe that most of us have suffered the pain in silence. And it's great to have somewhere to vent, with people that understand.

                            Shari
                            So very true...
                            Laurie
                            Age 57
                            Posterior fusion w/thoracoplasty T2-L3 Oct 1, 2010
                            Thoracic curve corrected from 61* to 16*
                            Lumbar curve, unknown measurement
                            Disfiguring back hump GONE!!
                            Dr Munish Gupta
                            UC Davis Medical Center, Sacramento, CA

                            Comment


                            • #15
                              Shari - your comment about suffering in silence certainly is true in my case. Of course at home my family knows how I suffer, but at the office, only a handful of people know I am in chronic pain. I told my boss last week about my upcoming surgery in December, and he said while he knew I had back issues, he would never, ever have imagined how bad it was. I come in every day, happy (not without some trips to the ladies room in tears from pain) but I never show it. It's dificult but I've done it for so long, I'm almost mastered it. No one can understand the severity of scoliosis and how it effects your life, unless you have lived with it - emotionally and physically.

                              JamieAnn - I second guess myself as well. Since I had the Rhizotomy, I have had such relief from that horrendous waist/buttock/hip pain that I think "what if this procedure fixed me for good" but of course knowing I've been in this situation before and the pain returns. You can make yourself crazy with the "what ifs"! You are doing the right thing. My first surgery was the best thing I ever did. I became painfree which I never thought was possible. I'm praying for the same result the second time around. GOOD LUCK! Regards, 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)

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