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  1. #1
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71

    Help?

    Iím not exactly sure why Iím posting now, I think I just need to feel Iím connecting with people that truly understand whatís happening. I hope you all wonít mind indulging me while I bring everyone up to speed.
    In June, 2008, I was fused T-10 thru L-5 for a 60 degree thorocolumbar curve and a 49 degree thoracic curve. My recovery was fairly typical up to the 12 month point but then I started having issues. I kept telling my surgeon I thought something was wrong, but he kept telling me my x-rays looked perfect and it just takes a long time to heal. I finally stopped seeing him at 18 months. By that point, I was still on narcotic pain meds and I had developed a significant forward pitch. That was December 2009. Since then Iíve seen two excellent adult spinal deformity specialists, one is a neurologist, and they both say the same thing: major sagittal imbalance, junctional kyphosis at the top of the fusion, L-5 thru S-1 is collapsing, and several other smaller problems. I need at least 1 very extensive revision surgery, possibly two. I am on 100 mcg Fentanyl via patch, changed every 48 hours instead of the typical 72 hours, 10 mg. oxycodone 4 times daily, neurontin for nerve pain, wellbutrin and celexa for depression (who me? Depressed?) and low dose hormones so I wonít kill anyone in my house. This barely gets me through the day. Iím the executive assistant for a state senator and due to budget cuts, my jobs will end June 30, along with the health insurance I carry for my family. I have a good husband, 3 kids (a sophomore in college, a senior in high school getting ready to go to college and a 13 year old going on 20), a house I canít keep clean, 3 cats to feed and scoop litter for, and a Suburban that needs oil every time it needs gas.
    Iím exhausted, all the time. I donít sleep well so I take temazepam to sleep, but if I take enough to sleep well, I canít wake up at 5:30am to get the 13 year old to school at 7:00 for early play rehearsal at school, and if I take a lesser amount so I can get up, I donít sleep much. My husband helps as much as he can, but he stays really busy with his law practice. When I break it all down, I know why Iím tired. Fighting pain all day every day is exhausting, as well as trying to stand as upright as possible.
    Iím ready to have surgery. Iíd do it next week if possible. But my job dictates my schedule because February through May is our legislative session and itís not a possibility to take 3 or 4 months off. I could do it during the summer, but, as I said before, my job ends June 30 so Iím looking for a new job, and assuming Iím one of the lucky ones and actually find a job with decent benefits, I canít take off that much time from a new job. Financially, I canít afford to have surgery after my job ends then look for a job.
    I donít know what to do. This is not how I pictured my life at 48 years old. Five years ago, I could run circles around my kids and everybody else. Yes I had pain, but it was manageable and I had energy. I guess one of my biggest questions is: Whatís causing me to be so incredibly tired? Is it the meds Iím taking, is it the pain and working to stand upright instead of looking like an ape, or is it the emotional toll of all of it?
    So hereís a question for those of you that have had the same basic problems I have: did you regain your strength and energy after revision surgery? Please say yes, because Iím looking for any little glimmer of hope at this point. I need to know that thereís a light at the end of this tunnel and I can get to it at some point. Hope. Iím looking for hope. Anybody got any hope youíd like to share?
    Thank you everyone for indulging my whining. And I apologize if I rambled It all just came tumbling out and I couldn't seem to make it stop! Iím just so tired and need something to cling to. I look forward to any responses.
    Becky
    51 years old
    Married 28 years
    3 kids ages 23, 21 and 17
    Fused T-10 through L-5 June, 2008
    Developed junctional kyphosis, flat-back and sagittal imbalance
    Revision Surgery June 27, 2011
    Fused T-4 thru S-1 with pelvic anchor screws
    Take 2 revision October 15, 2013 to locate source of continued pain
    Pseudoarthrosis at L-3, 2 screws removed

  2. #2
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    What's making you tired? Everything! I don't know how you keep up, with the medication, the sleep problems, the kids, the job, the sagittal imbalance and the pain. Life wasn't meant to be like this.

    I'll be watching to see what others suggest because my suggestion would be to have your revision asap because I see it as more important than your job or anything else. You have a responsibility to yourself first and foremost. I know, easy for me to say.

    Good luck Becky!
    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

  3. #3
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Allycat--
    I'm so sorry you are going through all of this. It made me tired just thinking of all those responsibilities with pain on top of it. As I read I thought--she has to have the surgery now! So I have to agree with Jennifer. Nothing else is worth it if you are going through all of this. I know that's a tough tough decision for you. I could never find the right time either but I had to let go of it all and say it's time. Hope you can find the right answer. 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.

  4. #4
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531
    Becky

    So sorry this has happened. Its just such a tough call for these surgeons to pick levels to fuse...they cant just fuse everyone T2 Pelvis from the get go....

    Sharon had PJK for about 5 years, was in quite a bit of pain till my surgeon extended her up to T2.
    She is doing well now, she had her revision last October.

    Even though some of us sometimes have to jump a few hurdles, there is light at the end of the tunnel.
    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  5. #5
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71
    Thank you all so much for responding! It feels nice just knowing there are people out there that have been through it, or something like it, know the particulars, AND CARE!! This is an amazingly strong, vibrant, caring and accepting group of people on this forum and I am deeply grateful for all of you. Thank you for making me not feel quite so alone.
    Becky
    51 years old
    Married 28 years
    3 kids ages 23, 21 and 17
    Fused T-10 through L-5 June, 2008
    Developed junctional kyphosis, flat-back and sagittal imbalance
    Revision Surgery June 27, 2011
    Fused T-4 thru S-1 with pelvic anchor screws
    Take 2 revision October 15, 2013 to locate source of continued pain
    Pseudoarthrosis at L-3, 2 screws removed

  6. #6
    Join Date
    May 2010
    Location
    NJ
    Posts
    70
    Hi allycat, I feel something like you, you can always find something to put off REVISION surgery, but I am having it on May 9 at Johns Hopkins, I ask Dr. if my back would be weaker or stronger,(because it sure is weak now) he said stronger, so I can only hope he is right, I can't stand upright without holding on. good luck to you, Lu

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