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Thread: Worse after my 2nd surgery...

  1. #1
    Join Date
    Jan 2009

    Worse after my 2nd surgery...

    I'm at a total loss.
    My 1st surgery was 11 years ago with rods going in to correct two 90 degree rods, removing discs etc. This left me with 2 smaller bends but only 1 measured in about 40degrees. We were told after 10 yrs they needed to put a rod lower...

    11 yrs later with tonnes of pain they were meant to take them out and replace the rod but go lower. They measured me at about a 40 and 50 something degrees by this time.
    I woke up being told they took it all out and left it out!!!! I can't find anything online about this happening as I was told they were never to come my spine was idiopathic and happened from straight to two 90 degrees in 3mths.
    They used bone grafts to hold me and repaired some lower discs and found osteoarthritis.
    Now I know its only been 6 mths since, but im worse than before, so restricted and i literally cant stand straight..i feel so weak. On my last drs review its measured my curves at 70 and 50 degrees!!!
    I healed so much slower than last time.
    I've landed in the emergency room paralised twice since the operation (the scans say theres nothing different) and we moved states so im stll trying to get all new post op drs and follow up care. I do hydro weekly but it only hurts me.
    The only thing that works is morphine injections when I land on the hospitals doorstep.

    I feel like this op took time off me. I have 2 young kids and with the move no support other than my husband. I feel lost and depressed. I'm a 26 yr old living in what feels like a 70 yr olds body. I cant work, I can barely stand 30 minute hydro classes.
    There's no way we can have more children (which is why we started early but the plans were for just 1 more). My body just wouldnt withstand it.
    This feels like the worst mistake ever to have the rods taken out. I cant stand up straight and I dont feel right.

    I'm hoping theres someone here who will help me get over myself and tell me it will take longer and they had this feeling after the next surgery... (last time i was back to normal after 3-4mths and had a good 2 yrs before the pain slowly came back).

  2. #2
    Join Date
    Jan 2009
    Ames, Iowa
    I'm so sorry this is happening to you. What does your surgeon say? Is it time to look for a different specialist who does revision surgery--or at least get another opinion. This just doesn't sound right. I'm sure others with more info will chime in soon. Hang in there, dear. 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.

  3. #3
    Join Date
    Oct 2009
    EGADS! Sounds just awful. You definitely need more expert medical advice than anyone here can provide. No, you don't need to be told to "get over yourself".

    On the contrary, I think too many on this site have too little sense of what they're entitled to from their providers, and not enough faith in their own sense of what their bodies need. I can't think of anyone who's posted about their "whining" etc. (like you) who has sounded in the slightest to be veering in that direction.

    One great purpose of this site is to correct for that, to an extent.

    I have trouble understanding how you have been left so in the dark about your treatment plans. I urge you to insist on getting answers - other opinions are important, too. There must also be "patient advocates" there - at hospitals and unaffiliated (for hire). Advocates are professionals who advise, help and act as intermediaries for patients unable to navigate the medical system. Advocates with more medical training can also help patients find good doctors for second opinions.

    I'm shocked and concerned for you and your family.

    I know Australia is huge (a continent, I hear tell) but there are members here who have benefited from extraordinarily high quality care there. For starters, "JenniferG" (and others) have gotten super care from a Dr. Askin in Brisbane - however near or far, he is to you. Certainly, there must be other surgeons Down Under who are members of the SRS (Scoliosis Research Society") . That's THE premiere organization world-wide for scoliosis/deformity specialists,

    Best of luck and keep us posted!
    Last edited by Back-out; 07-14-2010 at 03:35 PM.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  4. #4
    Join Date
    Sep 2003
    Northern California
    Hi mum...

    I'm so sorry this has happened to you. Since you've had such a sudden increase in your curvature, it's obvious that there was at least one part of your spine that didn't fuse properly. Is it possible to get a second opinion from another scoliosis specialist? It sounds to me like the surgeon who removed your implants doesn't know enough or doesn't care enough.


  5. #5
    Join Date
    Oct 2008
    Sunshine Coast, Queensland, Australia
    I could cry for you. This is a terrible situation for you to be in. But I am sure it is fixable. The most important thing is to find an excellent revision surgeon, one with lots of experience and perhaps, one who comes well recommended by folk here, if possible. Don't give up. You have lots of living ahead of you. Best wishes.
    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

  6. #6
    Join Date
    Nov 2009

    Rods removed

    I am so sorry you are going through all that. I also have 2 rods. Neck to butt. And my doc. wants to take them out due to a 45 degree curve again, and all the pain I feel. I was told also that they couldn't be removed. And now reading what you have experienced, I'm hesitant. And I also have 2 kids a husband and family that are so concerned, and worried. I have trouble walking and standing, even sitting up straight. I am 34, and I feel like a 70 year old woman. It's embarrassing, frustrating, and makes you so depressed. I hope things get better for you. I understand completely what you are dealing with. And now I'm afraid to have the metal taken out. My doc. says if everything goes well with the revision and metal removal, he says it should alleviate at least 50 percent of the pain I experience on a daily basis. Tell me what else you go through, I will pray for you.
    God bless you,

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