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

  1. #31
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Oh doesn't that give you the irits. Obviously they are people who've never been in the situation of desperately needing to know? Hang in there, Fierce!
    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

  2. #32
    Join Date
    Mar 2010
    Location
    Midwest
    Posts
    106

    Waiting

    Good luck with the waiting!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I think that is sometimes when you need the support the most because all of the what if's the revolve in your head. Hard to focus on the present which is just what you need to do. We are in the waiting mode for my daughter with her big medical visit. So you are not alone in the waiting arena! Hope you can find some pleasant distractions and support. A nightly beer has worked for my husband and I. Never did that before all of this surgery! And Thank God for LOST!

  3. #33
    Join Date
    Dec 2008
    Location
    Huxley, Iowa
    Posts
    190
    twinsmom- I love LOST. we have all the seasons. also, I have been making crocheted blankets for other people who have upcoming surgeries/revisions. Even though its summer, its nice to have something of your own in the hospital. Also, we went fishing a few times this weekend, and tomorrow is our first wedding anniversary.

    Good luck with your daughters medical visit!

    Thanks for the encouragement JenniferG
    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

  4. #34
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798
    Please let us know as soon as you hear, Fierce!

    Crossing fingers and eyes.

    What a sweetheart you are. And best wishes for a happy, happy anniversary! You and your husband are so lucky to have each other.
    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

  5. #35
    Join Date
    Nov 2009
    Location
    Colorado
    Posts
    390
    I remember reading some of your story back in the days before I was posting. Was rooting for you then, and I am rooting for you now!

    Hope this just turns out to be the big nothing, for once....you deserve to have a good outcome, and you will get there!

    Hang in there...
    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

  6. #36
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Fierce--
    Happy Anniversary! You've had quite a year to say the least. I truly hope you find out something tomorrow that has a very simple cure. Certainly been thinking about you and wishing you the best. 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.

  7. #37
    Join Date
    Dec 2008
    Location
    Huxley, Iowa
    Posts
    190
    Thanks everyone for the anniversary wishes. :-) We tried to go fishing, didn't catch anything and I was pretty sore, but it helped to take my mind off of things. Car rides are rough again, so we mostly limited it to short trips to the lake, and stayed in, then watched the last episode of LOST.

    As for news:
    I still hadn't heard anything, so I sent an email to the secretary this morning. I got an out of office reply that said she was on vacation for the week, but to call another secretary and it gave the number. I called and was told that the ENTIRE office was on vacation for the week, nobody was checking the mail, or incoming films, and to expect not to hear anything until Monday at the very earliest, but to expect Thursday, Friday, or even Monday the 7th!
    I said "Well, I may have broken a rod, and I would really like to know." the secretary said "That is not life threatening. You'll be fine. Just wait until they call." and hung up.
    Needless to say I was REALLY angry. So I called the insurance company. I now have a patient advocate. They are going to try to light a fire under somebody's fanny, and see what they can get, because there is no possible way that ALL the spinal surgeons at the University of Iowa Hospital are on vacation. SOMEONE can look at the xrays.
    Also, last week they had called me in a prescription (on Friday...right before the close of the office) for hydrocodone since the pain is getting increasingly worse. The nurse said they were calling in "enough for several weeks" so that it would last until my next appointment. She sent 20. And I am to take them every 4 hours as needed. (and no refills...and they are out of the office until next week) Granted, I take pills sparingly because I HATE them, but it is getting pretty unbearable. Again, the insurance was angry when they heard about that. They had me call my primary care physician and see if she could get the scans, and to give me a referral to a new surgeon. :-)
    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

  8. #38
    Join Date
    May 2009
    Posts
    3,745
    hi fierce
    20...for several weeks...you are obviously dealing with idiots!

    i am so sorry that the secretary or receptionist had the nerve to talk to you that way...the worst of medicine on display...too bad she cant have rods put in her back and break a couple...she would see how "not life threatening" it is!

    i hope the hydrocodone helps you...i'm on it, but get way more than 20 a month from pain doctor...and i havent had surgery...yet...i wish you could go see a pain doctor, just to have somebody who believes your pain and is willing to treat it til the "surgeons" return from vacation! any chance your insurance company would let you do that temporarily?

    hope something helps til you can get to see a doctor with compassion and concern!

    jess

  9. #39
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798

    Thumbs up

    Fierce:
    Needless to say I was REALLY angry.
    Healthy and necessary. Some people tend to a 'curl up and die' reaction when they are abused by others, either personally or by a bureaucracy. Glad to see you aren't one of them. Pain can do strange things to our sense of rightful entitlement.

    So I called the insurance company. I now have a patient advocate.
    Yes, oh YESSS! Didn't know insurance companies had such services. That's great. There are many paid patient advocacy services these days (wonder why!? ) - it's even an option for graduate study certification. (Many are specifically to deal with insurance runarounds, in fact, and every hospital offers them, though such advocates have mixed loyalties, of course.).

    There are also free ones which can be a good place to start. The NYTimes had a good article about Advocacy services recently. For general reference, though not for you (you're sticking up for yourself just fine), here's the article and one free site.

    http://www.nytimes.com/2009/09/12/health/12patient.html

    http://www.patientadvocate.org/


    They are going to try to light a fire under somebody's fanny, and see what they can get, because there is no possible way that ALL the spinal surgeons at the University of Iowa Hospital are on vacation. SOMEONE can look at the xrays.
    Damn tootin'!
    Also, last week they had called me in a prescription (on Friday...right before the close of the office) for hydrocodone since the pain is getting increasingly worse. The nurse said they were calling in "enough for several weeks" so that it would last until my next appointment. She sent 20. And I am to take them every 4 hours as needed. (and no refills...and they are out of the office until next week)
    *Censored*
    (Apart from her math disability).

    Sock it to 'em. I know I asked about your surgeon before (it IS the same one who'd been working with you through these two 'incidents'?), but where is he during all this, anyhow? Besides, on vacation, I mean.

    Are you satisfied with him medically at least - not that this treatment isn't medical too (and not just egregious bad manners)?

    That nurse who hung up after informing you your possible broken rod could wait, as it wasn't life-threatening, really deserves a reward in terms I had not realized were in my mental repertoire. Not waiting for the After-Life, that is (for those comforted by such faith in justice).

    Don't forget to get everyone's names (carefully and ostentationiously spelling them slowly) while keeping notes in a dedicated notebk on dates, and the gist of every contact you have with whomever. Just sounding like someone who knows how to look after yourself legally, can make people much more responsive and careful. It's good too to ask what supervisory person has authorized all approaches and decisions. This can give you a better chance of getting sooner to the person with whom the buck stops.

    And always be ready to say "Here's what I want to happen" (as calmly and politely as you can muster), in case you should be asked at any point. It 's also a good idea to state this clearly near the start of every new contact as it's initiated -after summarizing your prior communications and what was done/not done in response. Citing names where relevant and if time permits.

    Be sure to include facts, such as having been called at the close of office hours on the weekend, so you had no recourse - and right before they were all boarding their private departmental jumbo jet!

    I cannot believe that the U of Iowa is so oblivious to possible negative publicity (not to mention actual lawsuits) that it can afford to ignore a patient with an undiagnosed problem like yours, much less one for whom a problem is causing so much emotional grief and possible medical risk.

    And it's a problem that stretches over TWO surgeries and at least one prior rod break. All there, right? There are ALWAYS good places to send such complaints , with CCs. One potential recipient would be the SRS itself, if it involves a doctor to whom they have granted membership.

    A patient advocacy service should have an idea about this too. Many good doctors are unfairly sued (though many at fault get off scot-free when grievously at fault, because of the professional cabal protecting them). It's not fair to the good ones to be tarred with the same brush, but the fact is that most doctors will do just about anything to avoid a lawsuit, or the threat of one. Does your state's malpractice law still recognize "pain and suffering"?

    I am NOT suggesting you sue them! Just ways to get them to prick up their ears and not blow you off in this infuriating, unprofessional way. You or anyone else! One way is to sound like you might be a litigious hot-head.

    Sounds like the Patient Advocacy Svce. through your carrier is
    your best recourse. But not everyone thinks to look for one! Nor does every patient HAVE one through their carrier!

    Somewhere down the road, it seems to me, a complaint (and formal apology) are in order - at the very least. Ideally, there would be some fail-safes put into effect, to protect future patients from such insensitive negligence. What a lousy system! So glad your response is righteous indignation, aware that your rights as a patient have been trampled.

    Good luck, and - well done!
    Last edited by Back-out; 05-27-2010 at 02:03 AM.
    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. #40
    Join Date
    May 2009
    Posts
    3,745
    hi fierce
    sent you P.M.
    jess

  11. #41
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Amanda has said it all. I'm appalled by your situation. This is no way to treat patients. Call themselves "Professionals"??
    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

  12. #42
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Fierce --

    Have you heard yet? Let us know!

    Sending good thoughts your way.

    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.

  13. #43
    Join Date
    Dec 2008
    Location
    Huxley, Iowa
    Posts
    190
    I ended up going in for my 6-7 month check up today, without having heard anything STILL. My primary care physician did end up writing me a prescription for more pain meds, so I was taken care of on that front, but for some reason she was having problems getting the xray results as well.
    I had an EMG this morning to find out if I had any residual nerve damage from a car accident in January. It came back fine. :-)
    Then I found out that my surgeon STILL had not reviewed the xray results, though his secretary did say she had tried to pull them up MANY times but the files were not compatible with her computer.
    Luckily (and shockingly to me!) I have NO broken rods (as of a month ago). Apparently I have ridiculously strong and dense bones (I have been told this before by my neurosugeon who did my lamenectomy/lipoma removal in 2006). Apparently with a normal person (he said my age works AGAINST me in this instance), especially with those older than I am there is more give in the bone, so the screws in the pelvis have a certain amount of play and give more than mine do with any of the movements that a person would make. Because my pelvis doesn't have that play the screws pull harder on the bone, and consequently pop and grind against the bone. Until the screws have worn a slightly larger "hole" it sounds like they will continue to do so and be "uncomfortable" until then.
    He wants to see me again in a year....
    I've been put in physical therapy to try to get back to the level of activity I had last year.
    So all in all, good news.
    I am still probably going to get a second opinion though, because I have never heard of this...
    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

  14. #44
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    I have never heard of that either, however, I doubt he would miss a broken rod so at this stage, that is good news. It's all very confusing though isn't it?

    I hope you are feeling a lot better though.
    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

  15. #45
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    FLK ...

    I've been away a while: Is your surgeon still the same one who advised you to walk 15 miles (or something ridiculous like that) a *day*?

    Hang in there.

    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

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