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Another Bridwell horror story. Feel like giving up...

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  • #31
    Originally posted by Pooka1 View Post
    I think orthopedic surgeons are a select breed from within a select breed.

    That said, I think they just get very good at what they do after years and years just like in any other profession. What might be different is the "art" aspect of medicine in general and the "eye" aspect of scoliosis surgery in particular. Those things separate the men from the boys among the select within the select. Plus I think they have to have nerves of steel and a constitution that is not able to be flustered.

    At that point, they certain appear more than "ordinary mortals."

    But if you listen to some of these guys in the talks and videos and real life... ..may be best described as, "rocket surgery."
    Haha. Good one!

    In fact, having watched some of them in videos while they're actually in the process of operating, I was REALLY struck by their sang froid. Not at all sure, I'd want to be the patient being done while my surgeon was [almost] on Oprah!

    At least, the pts aren't revealed much beyond the bloody vertebrae - sometimes I was halfway through before I realized the head was at the opposite end. [HOW CAN THEY SEE WHAT THEY'RE DOING?? I can tell why Linda suggested after a few such links, that we might do better to watch schematic - animations instead].
    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

    Comment


    • #32
      Originally posted by titaniumed View Post
      Amanda

      I agree with Sharon's reasoning. You do have serious issues, some that even the best of surgeons really don’t have answers, or at least definitive answers.

      Weighing the risks is what this is all about. The surgeon that you pick will have to have all the answers laid out as to why a particular method is best.
      Thanks, Ed! But I'm afraid there are prices to be paid for my late start (and many false starts - like not realizing until midway through, how important the neuro issues are).

      One is that there simply isn't enough time remaining to request such schematic plans with any surgeon, even one like Dr. Shaffrey with whom I've met twice. Referring anyhow, to trying to fit things in before the deadline of my insurance plans - their changing in Feb. Even if I could persuade the volunteer (I figure he's at least 75!) to drive me back sooner, Dr. S's office coordinator would have to fit me in for an extra mid-point discussion - before the one he told her to schedule in early Dec. Not sure he's up for that. He's very popular and busy. I think that even though I didn't talk to him betw. appts (not even by email), I'm considered time-consuming. (Why in the world---? )

      I doubt he could fault a single question I've asked or issue raised (he was often there at the same instant), but I gather he's used to having grateful patients take him at his word most of the time. More to the point, perhaps, they are generally pts he's worked with for years before arriving at the point of surgery . Thus, most topics have been dealt with over time and "Speedy Lube" scoli decisions are the exception.

      Along with asking he lay out such decision trees!

      It's hard for me to "price" the options I have now: For instance, how much is it worth to me, to delay the whole thing? I always return at such points to my favorite (and most useful) uni course - "Rational models of decision making" - cross-listed AFAIR in Economics, Logic, Artificial Intelligence and Psychology (home base for me).

      How do you decide when one weighted outcome is "unaffordable" - like Death? (Is bankruptcy equivalent? Hard to say...but easier to quantify! "Either or" and w/o brain-death arguments).

      Not sure I can really debate between pre-and post February benefits given my budget. Post Feb [$200K] I WOULD have the "luxury" of asking for such schematic proof of his surgical plans.

      However, if I were to ask that of him now, it would be death to our relationship, I suspect - at least, if I'm holding out for that time table. In a word, STOOPID, per the messages I've gotten there re what are considered "reasonable expectations". Reminds me that in one context, a friend pointed out in that stellar course, "progress has finally taken us inevitably to Artificial Stupidity" !
      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

      Comment


      • #33
        What can I get in, before ("order of operations&quot

        It almost sounds like "moving slower" and doing a smaller surgery seems best rather that doing one large surgery. Let the body recuperate, then at a later date, decide upon tackling the next issue. When we age, recovery is harder. I have just gotten over a stomach flu, and I'm noticing that these events are getting tougher to deal with as I age.
        But you defy the rules. "CAVEAT Ed" I'd have said to the Stomach flu!

        OTOH I'm in a different category. As in - I'd wanted to squeeze in the cervical stenosis "tune-up" before the scoli op, as you may recall. (Turns out my intuition abt that - he was impressed - was all too accurate. It's damned near urgent, I gather. Having just read under 12 mm cord diameter qualifies and my last MRI says mine is <6mm. !?!).

        But Dr. Shaffrey says as necessary as it is, he considers it too risky to attempt first with the scoli surgery pending. Wondering if I can continue (at least ) this discussion with him - before December. Seems it ought to be different if we're looking at a M.I. surgery. Or does that make it worse? (->Less stability??)

        Somehow my ready answers here are just making me feel I need to rethink my schedule - but how? Oh help! It would be easier if I knew less. Can o' worms upon can o' worms...story of my life. Pandora had nicer imagery but it comes to the same thing.
        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

        Comment


        • #34
          Complex situations need simplifyng models

          Okay as I understand it, you need a few operations to address a number of issues , some or all of which might get worse in known time windows thatwill compromise the outcome. On top of this you have a hard deadline with insurance.

          You may have this sorted in your head but I think there is some chance that if you laid it out on a time line chart, the decisions would pop out.

          So if you need the following ops:

          1. scoliosis fusion
          2. neurosurgery for incontinences
          3. neck surgery for stenosis
          4. knee surgery

          you would order them according to:

          1. addressing most pressing symptoms
          2. cost/coverage by insurance
          3. time window for optimal result

          which themselves would be ordered in some optimized fashion for you.

          If you aren't doing so, you should be mentioning all you conditions not to get an opinion from a surgeon outside of his expertise but so that they know you have to address a number of issues and to get a sense of time windows. For example you neurosurgery probably should be done sooner than your scoliosis surgery which should be done before your neck surgery.

          Again, you probably have all this information in your head. If so then all that remains is to press ahead.
          Sharon, mother of identical twin girls with scoliosis

          No island of sanity.

          Question: What do you call alternative medicine that works?
          Answer: Medicine


          "We are all African."

          Comment


          • #35
            Choices

            Hey Amanda,

            I'm so sorry you've gone through this trauma. You of all people! You seem to do all the "right stuff" by researching endlessly and discerning every detail. I'm one of those people that if I have more than 3 choices I'll just run around in circles until I turn myself into butter! I go in for my revision surgery on October 13th, 5 years to the day of my original horror. As you might recall, my original surgeon said he'd have to remove all my old hardware and go in through my chest as well as my back. He advised me against it. He didn't have to..I would NEVER go through worse than the first time! After coming to this site after so many years to share with those of you who might understand, I found TitaniamEd and his recommendation of his surgeon who's just an hour away from where I live. I went to see him and he welcomed me and my case and said it would be relatively straightforward: no old hardware removal, and a very good chance of a successful outcome. Well, since I can't travel the globe to visit every prominent surgeon on the planet, I decided that was good enough for me. He did an AMAZING surgery on Ed, so mine should be a proverbial cakewalk. I'll post here to let you know if it all turned out okay, but I truly believe it will. I hope you can choose one of those accomplished surgeons who believe they can help you. Surely one of them can. Who knows why one will and one won't? But I want the guy who THINKS he can as well as having the credentials to do so.
            Good luck to you and I hope to see your success story posted here soon!!
            Sharon
            Singing the Blues
            Female 1951
            A/P Surgery Oct 13th & 17th '05, from T7-L5, 46 degree curve reduced to 19 degrees. Rib hump almost gone, but I have flatback. Thought it was "normal" and I would improve over time. I developed kyphosis above the surgical area. Had surgery with Dr Menmuir in Reno, Nv on October 13, 2010.
            Today I am still plagued with flatback, and I'm considering ALIF surgery.

            Comment


            • #36
              Many many thanks, Sharon for your wise, encouraging words. Much appreciated, and yes - for sure, who wants a surgeon who doesn't think he can "do it"? I guess my main objection is with doctors who don't restrict themselves to "I can't do it" and extrapolate to "No one can [or should ] attempt the surgery you need!

              Yes, I've spent a certain amount of time comparing my experience with yours - yours is loads more striking as an example! Much worse and potentially dangerous to you (being so off-turning). Grrrr.

              Your witching hour approaches and I feel the brew being whipped up will be GREAT! October 13th is fast upon us. You're on my mind increasingly. Can't wait to hear your report.
              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

              Comment

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