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  • Can I cry now?

    I'm frustrated. I just need to vent and know there are others here that know what I am going through.

    In 2004 I had my first surgery fusing my spine form somewhere around T-3ish to my L-4. Surgery went great, I was a million times better, running, biking, exercising regularly- everything was amazing. 2010 comes and I have a pain I can only describe as Earth shattering. After a year trying to figure out what's wrong with me and 15 doctors refusing to see me due to past surgeries, I found a doctor who would see me. He tells me I fractured my L-5 so bad that every doctor that looked at my x-ray thought my L-5 was actually my L-4 AND L-5. I went in for surgery in 2011, he fused the area L-5 to S-1 and made things better, I thought. The pain continued, it never stopped. I continued to complain of pain to him so I saw a pain management specialist and got shot after shot in my spine that did NOTHING. 2012 comes and I have surgery again to fuse my pelvis because Dr thinks that's the problem. Great... still I have a ridiculous amount of pain and now I am leaning forward and can't understand why I can't stand straight. It hurts to walk more than 2 minutes, I can't stand long enough to walk my dog, I can't go for nice walks on the beach with my boyfriend, I just hurt and hurt. Last week I go in for my annual and I find out my surgeon is out until September so his assistant sees me. He gets the x-ray and bam, why do I still hurt? I broke a rod, my fusion didn't complete AND I have "flat back syndrome". WHAT THE HECK IS FLAT BACK SYNDROME? Doc says flat back syndrome is caused by Harrington rods puling my spine into a straight line which is causing my head to lean forward. Now I have excruciating pain that I've been masking with every pain medicine known to man kind, a broken rod and flat back syndrome. Doctor says it's okay, we can do surgery. Again I don't want it! I have to have it. I go in tomorrow for major extensive reconstruction tomorrow morning and I'm scared. I'm tired. I can't handle the pain. I need help. I'm 25 years old. Why am I so unfortunate to go through all of this? Everyone says "oh it's so sad you're so young I'm so sorry" and the pity parties make me sick. I don't want people to know how I feel or feel bad for me that I feel this way, I just don't want to feel this anymore. This will be #4 major surgery, #6 going back into my back. 2 of the surgeries caused issues- 1 bad infection and 1 the screw came out.

    Someone, please tell me this will be the last time. I'm a teacher now. Every summer since I got my degree I have spent in a hospital bed. I want to start a family. I want to get married. I want to continue my degree. I can't with all of these continuous surgeries. I'm not sure how much more I can handle.

  • #2
    Wow! Shana, take a deep breath! Crying, I understand. In fact I think all of us that have had scoliosis since youth (heck, have it at all) have at one point or another asked why me and felt that things were unfair. But once you exhale and take another breath it is time to become wonder woman again and know that you are not alone. There are many on here that are praying and quietly rooting for you now. And what makes it better is we have all been in similar situations.

    There is no guarantee that this will be the last, but try to remain positive. Positive thoughts are the most important tool in the battle of bags that we carry on our shoulders. It makes you invincible to all the negative that will be thrown your direction with recovery.

    I will be praying! Keep us posted on how you are doing.

    Tamena
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

    Comment


    • #3
      So sorry to hear about your situation. Dr. Lenke is one of the best scoli surgeon's in the world. He specializes in "the worst of the worst," and most recently did a magnificent correction on babyboomer16. She had several botched surgeries by non-scoli specialized surgeon's and Dr. Lenke worked a miracle for her. Perhaps you could consult with him before having another surgery? Are your surgeon's scoli specialists?

      Warmly,
      Doreen
      Last edited by Doreen1; 06-19-2013, 02:20 PM.
      44 years old at time of surgery, Atlanta GA

      Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
      Post-Surgery curves ~10 degrees, regained 4 inches of height

      Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
      2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

      http://thebionicachronicles.blogspot.com/

      Comment


      • #4
        I just want you to know that I will be praying for you

        Please let us know how things are going for you

        Melissa
        Melissa

        Fused from C2 - sacrum 7/2011

        April 21, 2020- another broken rod surgery

        Comment


        • #5
          Shana--
          You've been through the mill to say the least. I'm very sorry this has happened. Definitely--have a great cry--sure we've all had a few and then do what Tamena said. If your surgery is actually tomorrow, you've got to switch gears to a positive attitude. Easier said than done but it can help with the outcome. May have to fake it at first! Where are you located? Has the same doctor done all of the surgeries? Prayers and positive thoughts coming your way. Keep us updated. 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


          • #6
            I would cry too, if it was me. I don't know why some people have such a hard time with their scoliosis. It concerns me that perhaps one or more of your surgeons weren't up to the job but the most recent diagnosis rings true to me and I hope this is your final surgery. Let us know how you go and we'll look forward to following you as you rejoin life and start doing the things a 25 year old should be able to do. Wishing you the very best of luck!
            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


            • #7
              Shana,

              Is your surgeon a scoliosis revision specialist? If not, is there any way you can postpone and see someone who is? There are others on the forum who have had flat back and all the problems you describe and were able to get it corrected with a revision specialist. You can do this, and you will get your life back! But you do need a top-notch specialist. Travel if necessary. I know you do not want to cancel on your surgeon, but it's time to take care of YOU!

              Best wishes,
              Evelyn
              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


              • #8
                Shana- hi! I could really feel your frustration and you have good reason to feel that you want to give up. There are no guarantees, but I do hope that this surgery is your last and that you will be able to get on with your life. There are so many people on the blog that are on your "team". You a not alone. You can do this because it sounds like you have a lot of dreams and hopes for the future.

                I am sending you positive thoughts and wishes for a successful recovery! You deserve it! Where are you located?

                Take care. You are in my thoughts and prayers.
                Susan
                Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                2018: Removal L4,5 screw
                2021: Removal T1 screw & rod

                Comment


                • #9
                  Try Vit D. Sounds weird but it took my pain away.

                  I can kind of relate. I had the Harrington rod put in and was doing great until it broke. Then CD rid put in. Then screws started to come out and ribs started turning and only have 50 percent of breathing now. I was in major pain for years and saw many doctors. 2 wanted to do surgery. My main back doctor said it'd be a dangerous surgery. Too dangerous. Then I saw a doctor who tested my vitamin levels. I was low on vit D. He prescribed Vit D pills and I haven't been in pain for years. The whole time everyone assumed it was my surgeries causing the pain. Your back sounds more serious but maybe try Vit D and see? It might make the pain less. My pain went away within 2 days of the doctor prescribed pills. Regular over the counter Vit D didn't help. I'm wishing you the best!

                  Comment


                  • #10
                    Of course!!!

                    Shana,

                    Yes, most definitely, without a doubt, you can cry. Cry until you can't cry anymore.

                    We are all here for the same reason; to get support.

                    I just had revision surgery the 9th of May. I've had a bad recovery time; I had a blood clot in my left lung, pneumonia, then the nasty respirator. It wasn't fun but I keep pushing.

                    I'll be praying for you but know we are all here for you.

                    Chris

                    Comment


                    • #11
                      I am so terribly sorry for your pain and hope you feel better soon. I'm not going to say anything silly like "stay positive". I'm just going to pray that this last surgery has given you at least some of your life back. Hang in there.

                      Comment

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