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Thread: On the verge of a mental breakdown...

  1. #1
    Join Date
    Dec 2008
    Location
    Huxley, Iowa
    Posts
    190

    On the verge of a mental breakdown...

    I have been so careful this time. SO CAREFUL. Not to bend, not to lift, not to lean...

    Tonight I felt the "Pop" again. The one that means a rod has broken. Maybe I have mistaken it...it's happened twice before...and its exactly what it felt like before, a POP, numbness, then scraping feeling. My lifts make me feel uneven, and changing positions send an "electric shock" feeling down my spine.

    We were supposed to find out if I had fused properly in less than 1 month. In less than one month I was supposed to be cleared to move on, to start a family. All I can think of is "NOT AGAIN." Pain, I can handle, but putting my husband through this again? Stopping my life AGAIN, no trying for kids for ANOTHER year?

    Sorry to be so whiny...I just don't know what to do or say at the moment. I am trying not to cry, my mom came down from the twin cities for a belated mother's day visit, and my husband has been so awesome in this. But...can I do it AGAIN?
    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

  2. #2
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,557
    Fierce

    Oh no. I donít believe it. Lets hope this is a mistake and maybe it was just a muscle or ligament repositioning....

    Let us know what the Doctor says...
    Ed
    49 yr old male, now 59, the new 55...
    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

  3. #3
    Join Date
    Mar 2010
    Posts
    2,755
    Quote Originally Posted by fierceliketiger View Post
    I have been so careful this time. SO CAREFUL. Not to bend, not to lift, not to lean...

    Tonight I felt the "Pop" again. The one that means a rod has broken. Maybe I have mistaken it...it's happened twice before...and its exactly what it felt like before, a POP, numbness, then scraping feeling. My lifts make me feel uneven, and changing positions send an "electric shock" feeling down my spine.

    We were supposed to find out if I had fused properly in less than 1 month. In less than one month I was supposed to be cleared to move on, to start a family. All I can think of is "NOT AGAIN." Pain, I can handle, but putting my husband through this again? Stopping my life AGAIN, no trying for kids for ANOTHER year?

    Sorry to be so whiny...I just don't know what to do or say at the moment. I am trying not to cry, my mom came down from the twin cities for a belated mother's day visit, and my husband has been so awesome in this. But...can I do it AGAIN?
    I thought they used materials now that weren't supposed to break. I'm sooo sorry to hear this. Best wishes.

  4. #4
    Join Date
    Dec 2008
    Location
    Huxley, Iowa
    Posts
    190
    Ed-
    Unfortunately it seems as the day went on I was more and more sure it broke. Car rides are back to being bad, as are steps, as is moving to any position. :-(

    rohrer01- Usually they don't break, but they can. Its a VERY low percentage. I was told 1/2 of 1%, but I have heard as high as 3%. I have no idea what the percentage would be for it happening twice! I am just that lucky I guess.

    -Sara
    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

  5. #5
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,557
    Fierce

    I sure hope you can get in quickly for an x-ray. Didnít they use BMP on your revision?

    If you did break your rod, this would be a vitallium break statistic.

    Also, the amount of time from fusion to breakage would be very close on both attempts.

    Sigh...

    Ed
    49 yr old male, now 59, the new 55...
    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

  6. #6
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798

    Thumbs up

    Fierce, I can't remember just what I wrote yesterday night, but I'll recap a little of it. First. I want you to know that when this site was "down" (for at least 12 hours) many messages were lost. Don't know how many, as I'm only aware of my own that disappeared, but one of them was to you here. Not only mine but at least one other person wrote encouraging words after me. Theirs and mine were deleted on your thread alone.

    Just so you know more people cared and wrote!

    The gist of mine was
    a) hope that it wasn't as you feared
    b) suggestion not to think about it, while you couldn't be sure as worry doesn't help (platitude )
    c) most of all, strong confidence in your ability to "make it" whatever is thrown your way!

    When you chose your net-name, you clearly spoke from the heart and self-knowledge and that's what comes across.

    Can you do it again you asked (if you have to, that is)?
    YES, OF COURSE! You're fierce!! You'll do what it takes, the same as always.

    And, hey, you're only 24! Sucks to have all this to deal with instead of your cherished life plans, but you have SO much time - and the inner strength to make of it what you will, despite setbacks.

    A word of question/caution too - about whether you're going through all this with the same surgeon.

    I had thought a "perfect correction" as you say you'd gotten, might lead to rod breakage and other problems - sometimes, anyhow. Might have this wrong, but it would certainly make sense at this point to have a second, third or even more opinions. I mean, even without a broken rod, just to make sure you have a back-up to whoever is following you if there's any chance everything is not picture perfect.

    I sure am before going under the knife! I only have one spine to last me the rest of my life, and I wish now I'd paid more attention to it when things were starting to go downhill. Instead, like so many mothers I focused on my children who both had/have special needs. They're much better off for my efforts, but OTOH, I who was strong and healthy, am now disabled. This is doing all three of us harm.

    Don’t take any chances!

    Apologies for the tangent. I want to make sure you appreciate your youth, your resilience and your courage. Sounds like you have a great husband too (who will someday make a great father. Choosing badly in that department, was my GREATEST error!)

    Since you're six years younger than my older son, I'll express my (genuine) confidence in you like a mother would! Sorry for the political plagiarism, but - since you asked, YES YOU CAN! And what's more, the more strength you show (and the better your self-care now and later) , the better mother you'll be when the time is ripe!

    Amanda
    Last edited by Back-out; 05-17-2010 at 01:11 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

  7. #7
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Yes, my posts have gone as well. I am pretty shocked that this could happen again and I am hoping it's not a breakage but don't know what else it could be, and since you've had it happen before, I guess you know what it feels like. I can't imagine how disappointing this must be.
    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

  8. #8
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Fierce--
    I've followed your progress and set-backs from the beginning and I can't believe this could happen again. Do you have an appt. for them to check right away. I so hope it's something much easier to fix than a broken rod. Sure thinking of you. 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.

  9. #9
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798
    My encouragement notwithstanding, it's a body blow.
    Yes, you can handle it but why should you have to?
    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

  10. #10
    Join Date
    Jul 2007
    Location
    I live in New Milford, Ct and grew up in Brooklyn, NY
    Posts
    66
    I am so sorry you are having to go through all this. It really doesn't seem fair, especially since you have been so careful. Facing this surgery even once takes so much courage. I hope it turns out better than you think. You are in my thoughts.
    dianeh
    ant./post. fusion Jan. '06
    T3- sacrum
    dbl.curve, T47,L43

  11. #11
    Join Date
    Sep 2007
    Location
    Geneseo, NY
    Posts
    133
    Tiger,
    You deserve better than this. My thoughts are with you.
    1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

  12. #12
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798

    excuse the digression but is this what we all need to do, post surgery?

    Fierce:
    I have been so careful this time. SO CAREFUL. Not to bend, not to lift, not to lean...
    To repeat my title question.

    If this is the level of caution we all need to exercise, it certainly is a dismal prospect. I'm used to medical advice which basically says "let your pain be your guide",

    It seems after this surgery, that's far from adequate.
    Any comments from those of you "on the other side" of surgery? Were you instructed to exercise this amount of care? Seems almost impossible to achieve - at least, not without wearing a brace. (And it's a good argument for wearing one, at that!)

    Poor, poor FierceTiger... We all mourn with you if it's as bad as you fear. We ARE all in it together, and we all know it could be any of us.
    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

  13. #13
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Quote Originally Posted by Back-out View Post
    Fierce:


    To repeat my title question.

    If this is the level of caution we all need to exercise, it certainly is a dismal prospect. I'm used to medical advice which basically says "let your pain be your guide",

    It seems after this surgery, that's far from adequate.
    Any comments from those of you "on the other side" of surgery? Were you instructed to exercise this amount of care? Seems almost impossible to achieve - at least, not without wearing a brace. (And it's a good argument for wearing one, at that!)

    Poor, poor FierceTiger... We all mourn with you if it's as bad as you fear. We ARE all in it together, and we all know it could be any of us.
    Patients are told no bending, lifting, or twisting, usually for about 3 months. You may think it's hard to do, but when the alternative is more surgery, it's not all that difficult.

    Rods break when there is an area that doesn't fuse. Movement within the early post op days can easily cause a level not to fuse. There are other cases, where patients just don't fuse well. The surgeons I work with always take extreme measures (e.g., using BMP, fusing both the front and back of the spine) when they're performing surgery on someone who has had a previous non-fusion (pseudarthrosis).

    --Linda

  14. #14
    Join Date
    Mar 2010
    Posts
    2,755
    I don't know what to say... If it is broken, will wearing a brace next time help to stabilize it? Sorry to hear you are going through this. I guess I was wrong about the materials they use. Maybe they have something more flexible and less likely to break?

  15. #15
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798
    LindaRacine
    The surgeons I work with always take extreme measures (e.g., using BMP, fusing both the front and back of the spine)
    What is BMP?
    Can one fuse ALL of the front and back of the spine - i.e., when they start with a high thoracic fusion?
    What surgeons do you work with?


    Oh yeah, and NO lifting at all? Or is there a minimal weight allowed?
    People say they manage on their own or even return to work during this period, but I don't see how it's possible while avoiding motion to this degree and without any lifting (not even a light purse? Course, I don't know how men manage without purses anyhow).

    Unless, that is, one wears a brace. This is VERY hard to imagine remembering, whatever the incentives are, without some external reminder (like a brace). I would be willing to wear one. Do most surgeons offer it as an option?
    What control can one exercise during sleep, for example? It's definitely making me think, there's no way I can do without assistance for those initial three months, then. I certainly don't want to take any chances.

    Do you know if this three month period is considered to be adequate for everyone or do they recommend waiting even longer for those who are older or in other demographics to do with the fusion type? Walking is considered OK, though, right - Even required? Guess it has to be a very slow and careful walk. (No dog walking, I assume. )

    Every little thing can involve some twisting or bending, without a brace. I know I was unable to control my hand after surgery, without a splint (which seems the same thing on a more minor scale). It was important to avoid certain movements in order for my reconstructed thumb joint to heal. Especially once the pin was removed, after six weeks.

    Are there any negatives associated with brace wearing - except for intrinsic (like their being hot or itchy)?

    Thanks!
    Last edited by Back-out; 05-18-2010 at 11:53 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

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