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Thread: Help?

  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
    3,555
    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

  7. #7
    Join Date
    Nov 2009
    Location
    Colorado
    Posts
    390
    Becky,

    First of all, so nice to have you back! But, so sorry that matters have only degenerated further...yet, the good news about that is that you are ever so much closer to putting yourself first in your life, kind of like when the flight attendant tells the mothers to (in an emergency) put their own face mask on first, and THEN the child's. There are good reasons for that.

    As for revision surgery, it sounds like you need it. Period. The sooner the better. Looking back on my own life, it's amazing what you can get through when there is no time, no money, no energy. Doors close, doors open...I think there is even a saying or two about the subject.

    As for your life, all those factors you mentioned sound so much like stuff that I went through at that age. I think it's a tough age, very hard. Your kids are launching right and left- there's a ton of stuff going on around graduations, college apps, final this and that- what should be fun and bittersweet is a nightmare when you are in nonstop pain and weariness. I think one of the biggest reasons I was so tired at that age was I was exhausted from being good, rising to the occasion when I wanted to pull the covers over my head every morning. The body is a hormonal war zone, and I didn't even have the pain and associated pain meds that you are dealing with. (But lots of other fun stuff going on.) The 50's are so much better. For me, I could basically wrap my 40's in a big box and put it on a shelf unopened for a long while- maybe dust it off and have a look in my 60's. (Big smilie here...hey! I miss our emoticons....these blue boxes with ? just remind me of life! Huh?)

    Sounds like you need to sit your husband down, and then later your family and tell them that you are approaching your bus stop and you need to get off at the appropriate place and try to fix yourself. The world will rearrange itself. I'm wondering if your job ending might not be the greatest universal timing imaginable. (missing emoticon here)

    Hang on, Becky...you can do this messy life thing- you can! Being in the indecision mode is the worst. I think you will feel better when you make a solid decision- whatever that may be, and God bless you, girl!

    Amy
    Amy
    58 yrs old, diagnosed at 31, never braced
    Measured T-64, L-65 in 2009
    Measured T-57, L-56 in 2010, different doc
    2 lumbar levels spondylolisthesis
    Exercising to correct

  8. #8
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Becky, I too am exhausted just reading your post. You have a lot on your plate with your family, pets, work and daily pain. I don't know how you manage at all and I know I couldn't do half of what you do and I don't even have back pain as it's my son who has scoliosis not me. As others have said, you need to take care of yourself first so you will have the strength to care for others. Let us know how you are doing and what you decide to do regarding the surgery.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  9. #9
    Join Date
    Dec 2008
    Location
    Huxley, Iowa
    Posts
    190
    No wonder you are tired! I can't even imagine having that much on my plate right now.

    I can say that for a short time after my last revision surgery I had NO pain. NONE. So I believe that it can happen.

    I truly hope that you can find time to work the surgery in and that things work out wonderfully for you. Please keep us updated.
    25 years old
    double 70+ degree curves before surgery
    Anterior on 11/11/08
    Posterior on 12/2/08 with titanium rods
    nearly perfect correction
    fused t-10 to pelvis
    with a hemi-vertebral osteotomy at L4

    Broke right rod at L4-L5 on 06/26/09
    Broke left rod on 10/24/09
    Revision surgery on 11/5/09 with vitallium rods
    Broke both rods again

    Had posterior than anterior revisions on 03/11 at the Twin Cities Spine Center
    Declared "FUSED" on 12/6/11

  10. #10
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    You might look up Naptown78 (Kristy). She had revision surgery for flat back and saggital imbalance and it has helped her a lot!!

    Good luck,
    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  11. #11
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Becky,

    My goodness you have a lot on your plate.

    You will have your job and insurance through June--why not schedule the surgery asap? I know you said that it's not 'convenient' because of legislative session, etc., but who cares! Your health is more important. If you find a surgeon and schedule, your employer couldn't stop you from going on medical leave.

    Am I missing something? Your health is the most important thing, you should get this surgery while you have good insurance.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  12. #12
    Join Date
    Mar 2011
    Location
    Tampa, Florida
    Posts
    4
    I've also been having a lot of pain, but my surgeon tells be the pain is in my head (yeah right). I've also been having trouble sleeping and have a son so I can't take the ambien prescribed to me for the same reason you can't. I'm also prescribed ativan for anxiety, so I take one at bedtime and it usually knocks me out, but not enough to keep me out till morning. That way I can sleep, and I can still wake up for my son. I have a friend that is prescribed xanax (same thing as ativan) because he has trouble sleeping. Maybe something like that will help you, too?
    Last edited by NoahsMommy; 03-19-2011 at 04:37 PM.

  13. #13
    Join Date
    Jan 2012
    Posts
    1

    Talking suggestions to try, Becky

    I am 73, had CFS for 30 years . I am to have surgery Jan. 25 - all the way from the shoulder down. I also have osteoporosis. It took me over 4 years to find a surgeon to fix just the bottom L4- L5. I have found nothing helps my pain but Klonopin does relax my muscles - the generic doessn't work for me. I also take Ambien for a long time but it doesn't knock you out, I can still hear the furnace kick on and I can go to the bathroom. I had a rectal prolapse operation last year and have lost the control of ,my bladder. I never said "can't do" taught school 40 years . I think you need to sit down with your family and make it clear to them that you need to do thiss NOW. I wish I had many years ago. God gives us a body , this is yours, now make it yours and take care of yourself and ask them to help you as you have helped them. God bless and give you strength.

  14. #14
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,555
    Hi Susan

    Wishing you the best with your upcoming surgery....be sure to keep in touch with us.

    Welcome to the forum.

    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

  15. #15
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    I am going to echo what the other posters have said. You have to take care of your body NOW. You do not have a choice. If you do not take care of yourself and something happens and your pain increases and you have no health insurance , what are you going to do? Your job will survive without you and your family will
    step up and be there for you. That is my advice
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

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