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LAST CALL: "surgery for convenience?” Also, is the Cobb angle over-rated?

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  • LAST CALL: "surgery for convenience?” Also, is the Cobb angle over-rated?

    Forgive this length, please! I'm at my wits end. Beyond, if possible. Back and forward, forward and back. The more I know, the "less I know I know". Fine for philosophers, not for patients!

    I was about to start with a take-off on the old saw about the weather - you know, “everybody's talking about the [Cobb angle] but so one's doing anything about it”.

    Thing is, it's pretty much the opposite, from my POV. Everyone IS doing "something" about Cobb angles [surgery] but my Cobb angle has seemingly stayed about the same for ten years - at least, in an apples to apples comparison (=same facility.). Radiologists at my local - sub-par hospital - have been reading my L Cobb at ~ 41-44 deg for the whole bloody period! What's more, they've been calling my scoliosis “mild to moderate". What do people "do about it" when the Cobb is basically OK, at least, stable?

    More history... I'd been engaged in strenuous DENIAL up until recently. I’ve had severe on and off pain since my 20s but as soon as it went away/was reduced (exercise, a great therapeutic bike - whatever), I put it out of my mind. I had a “bad back” . Well, lots else was problematic too, and besides, my kids needed me – badly. I was on my own and it was more convenient to put anything non life-threatening on the back burner. In fact, even a good many life-threatening issues were shoved there too! (The back burner got pretty crowded!). But now that the dust is settling w/ my kids - for now, anyhow - I wanted it to be “My turn”, finally. For life remediation: house, work, health. SPINE!

    Finally, despite the ( local) trivialization of my scoliosis - per imaging and neurologist (he’s acted as my de facto “back specialist” since there aren’t any in town), I decided to investigate THE surgery. That was based on my OWN findings: pain, disability, and structural changes ( I’ve lost 4”, somewhere - ?? - and developed marked L kyphosis in the last five or so years). Also very distressing neuro symptoms/dxes. I.e., something wrong with perineal nerves -> both kinds of incontinence, sacral pain. Sexual? Don’t ask. You’d think my neuro would have said something if only based on the MRIs reports, but there was so much going on, spinally and otherwise…And besides , those scoli films kept coming back reassuring!

    In March, I finally got to my first ever scoli experts. Step 1 was a new scoli Xray at HSS, after which three (unaffiliated ) deformity surgeons in NYC, read it as showing “severe” scoliosis and an L Cobb of 60 deg .

    Learning my L Cobb had apparently changed by 16 deg in barely a year, was BAD news-GOOD news. "Bad", because - well, who wants a rapidly progressing curve? "Good", because it made a difficult decision loads easier. It’s not just that surgery is - as it is - but that I'm under a major time constraint ($/insurance and social - who can help me after surgery if not now?). The decision is extra hard since I haven’t had the years to incubate the choice most of you seem to have had That’s because of getting off to a late start – refer kids, denial and misinformation, above!

    HOWEVER, in mid July, I found that huge progression was an artifact of intra-facility mis-reading. I finally had another (un-needed) scoli series here in June - just for comparison. They read it the same - 44 deg L as before! Yes, it's a big fat error, but what really matters is that the "absolute difference" between readings shows no significant change.

    I apologize again. MOST of this is old hat on site. What's new, at least, in a dedicated thread, is that my investigation was derailed. In March, I thought my choices were relatively a "slam-dunk" - surgeon (and accordingly, fusion length). And my surgeon line up IS straightforward. It's the WHY I'm confused about. Even the WHETHER.

    I’m probably going to schedule the surgery soon, anyhow, because, well - because it’s convenient. In a BIG way! (As I’ve said elsewhere, the cost diff. alone is $60-120K more, after my deadline ) .

    OTOH this is VERY serious surgery, to say the least. That’s especially so, with that 71% predicted complication rate in my demographic (cf LindaR’s recent link). That may be even higher for me considering other personal factors highlighted in the famous WASH.U retrospective study (i.e., my lumbar curve is primary, P/A and length of fusion) .

    I COULD probably put it off until later, if vital medically - though at great cost and (social/financial) risk. So, let’s say I DO have a choice - albeit a hard one. After all, no one in their right mind would have this surgery, if it could be avoided regardless of getting it "on sale" - certainly not " for convenience”. Or would they? Maybe I’m NOT in my right mind anymore after being under so much stress - from time pressure and after getting so much unexpected information, since starting my quest….LATE.

    Please consider this an SOS , asking input including “devil’s advocates” in my decision. Another way to look at it, this is kind of like the “last call” at a wedding when the minister asks “IF anyone knows why this man and woman should not be married…speak your piece”. If I could wait, yes, indeed, I WOULD! I’m definitely deciding under duress - OTOH maybe it IS for the best.

    One thing about this surgery - once it's done. IT's DONE. I especially appeal to anyone who wishes they had waited. Someone who wasn’t in excruciating pain and who otherwise, doesn’t fit the “easy” profile favoring surgery. Especially, at my age. And I remind you that I began this thread with two questions:

    First, about deciding for surgery “ for convenience” . Second, in the absence of a dramatic Cobb progression, how much should I weight other problems? E.g., degenerative disks, spinal stenosis, flat back, height loss, L kyphosis? Also neuro symptoms! And more. Is this Holy Grail of the Cobb angle over-rated?

    Against surgery:

    1) My Cobb appears NOT to be progressing - not much, anyhow. I recently collected all my Xrays from 2000 (they weren’t even scoli films then - just piecemeal area Xrays) - some literally rescued on their way to the incinerator! I don’t have “documented progression”. Maybe ten degrees in ten years. (Maybe not. Who to ask?)

    2) I hate to admit that (part of the denial) I haven’t explored many modalities of pain relief. I’ve relied on oral meds, including at one time a VERY high level of narcotics. (I never want to go there again. My goal is to engage in creative work, as in the past - impossible if I’m either in excessive pain OR on excessive pain meds!).

    On account of both the above, if I level w/surgeons I’m not even sure I’d be OKed for surgery! (I’ve noticed surgeons don’t tend to consider financial and social factors as indications for surgery). OTOH if I do things the “right” way and at least, try other pain relief and then (as I expect) get pushed into surgery AFTER my deadline, how smart is that? Same surgery needs, but only a year or two later, I’m hugely out of pocket and may not be able to arrange social support! In a way, I’m turning to you rather than putting it all to my surgeons for fear I’d be turned down. That would be a high price to "feel comfortable with" my decision. Maybe you all - who understand - can help!
    Last edited by Back-out; 08-20-2010, 09:36 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

  • #2
    Hi Amanda. There are probably plenty of more knowledgeable people here to discuss this but your post throws up a few questions to me.

    1. Are your other problems, including incontinence, deemed to be caused by your scoli?

    2. How much pain are you in? You say not excrutiating, yet you were once on strong narcotics?

    3. Is your pain increasing?

    I know it appears your curve is not progressing, but that doesn't mean it never will. Mine didn't move for maybe 30 years, but then moved rapidly. The question about your pain is relevant here because if your pain is deemed to be caused by the scoli (not to mention other problems) then, does it matter what your cob angle is, or how fast it's progressing?

    Do you want to try other means of pain relief, or do you just want to get it fixed? I wasn't even offered pain relief, I was sent straight to the surgeon and got fixed. But everyone's different, and for some, alternative pain control seems to work. I don't blame you for not wanting to be medicated to the eyeballs.

    There seems pressing reasons to do it now, if you can, as opposed to later, with your social and financial concerns. Doing it later means you will have the pain and other possible symptoms for a few more years, and you're not getting any younger.

    The surgery is big, but it's doable, Amanda. It just won't get any easier as you get older.

    I hope some of our more knowledgeable members can give you a clearer picture.
    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

    Comment


    • #3
      We're (marginally) in the same place. My son has a clear "in surgical range" curve (his scoliosis has been measured everywhere from high 40s to low 60s, and his kyphosis is in the low 60s). His Dr. up here recommends surgery, but in no way pushes it.

      Reasons against: He's in zero pain/discomfort. His curve isn't progressing (although the all-over-the-map measures make that a little harder to discern.) His cosmetic issues are manageable (although the kyphosis gets to him some). He's right on the verge of lots of other big life decisions which he'd prefer to get behind him before he deals with this.

      Reasons for: He has insurance, which is only guaranteed until our COBRA runs out (in Oct 11). Young people recover more easily. He has a small syrinx, which puts him at some increased risk for accidental spinal cord injury.

      Barring some big change (the curve obviously progresses or he starts feeling pain) we're inclined not to go ahead with the surgery. For me, the key question is "If something goes wrong, what am I going to say to myself." And, right now, what I'd say to myself is "Why exactly did we think this required surgery?" And I'm pretty sure we'd feel that much more strongly then the counter argument of "why did I wait until the curve got bigger/he felt pain?"

      But, he's a kid (22). If he were even 30, settled into a job and relationship, I might calculate the odds differently.

      For my counter argument (), my mother started having alot of pain in her hips when she was in her early 60s. She's terrified of surgery and never got it taken care of. That decision means that she's spent that last almost 30 years in increasing disability and pain that she probably could have avoided, but she's far too frail now (and was, even at 70) to get surgery.

      Clear as mud, eh

      Wish there were some clearer method of making these decisions.

      Comment


      • #4
        Originally posted by JenniferG View Post

        1. Are your other problems, including incontinence, deemed to be caused by your scoli?
        I don't know. No one seems to be asking about this. (Which disturbs me). I'm making sure subsequent appts deal specifically with neuro issues and differential dxes. I'm also scheduling with two neurosurgeons, one in connection to upcoming consult. In fact, one is a board-certified neurosurgeon/ortho-surgeon specializing in deformity surgery. The continence issues are REALLY concerning me now, as I'm afraid it's already too late to address them, and not even sure all can be dealt with at once.

        2. How much pain are you in? You say not excrutiating, yet you were once on strong narcotics?
        Pretty much pain (I don't do well with that 1-10 scale. Maybe I'm too literal. Let's just say I spend a good bit of time lying down ). Was on hi dose narcotics because tolerance led me to increase the dose - not because the pain increased that much.

        3. Is your pain increasing?
        Another problem. Since really looking into the surgery and admitting how bad things are, my pain is somewhat LESS. That's because simultaneously I began floor exercises (up to hr/day) which helps a lot. Otherwise put, if I DON'T do them for a week, I can scarcely walk!

        I know it appears your curve is not progressing, but that doesn't mean it never will. Mine didn't move for maybe 30 years, but then moved rapidly. The question about your pain is relevant here because if your pain is deemed to be caused by the scoli (not to mention other problems) then, does it matter what your cob angle is, or how fast it's progressing?
        I'm quite sure my pain is a function to a large extent of other conditions (especially DDD, Probably also spinal stenosis. Maybe sacral issues, including cysts.)

        But I'm not the only one with scoliosis AND "co-morbid" conditions. Short of having a trial operation (maybe for stenosis) I don't know how much it's possible to tell what's coming from where. (And BTW "diagnostic surgery" is what my neurologist is suggesting now. Ha! Too little, too late. Where's he been all these years he's been ordering me full spine MRIS and prescribing me stratospheric narcotics?? ) My recent CT myelogram reputedly shows TONS of neuro pathology - we didn't even get to talk about it at our last appt!

        Also pain relief modalities can be for relief but equally, diagnostic. JUST what I don't have time to experiment with any more! (eg. ablations, various injections. Just had facet jt injections which did zilch). They take a lot of experimentation and worse still, they have to be located w/i mm of the exact problem to give a meaningful result (i.e., yes, this spot is significant in causing yr. pain). Jess is the best example of this kind of situation/treatment. However, surgeons may want me to try these methods first to PROVE they don't work and/or to localize my pain.

        Probably I could insist on surgery, based on the amount of pathology - but should I? That is, I could insist and succeed, except with a VERY conservative surgeon. Unfortunately, the dual certified one I'm abt to see is JUST such a surgeon.

        The others I've seen (all given my MRIs - with diagnostic reports - and told abt my incontinence) - have been ready to operate.

        Sometimes, I think they don't really listen, though. There's so much the matter, they just tune out in that short intro appt. Nb I'm sure your Dr. Askin would have been VERY different.

        Do you want to try other means of pain relief, or do you just want to get it fixed? I wasn't even offered pain relief, I was sent straight to the surgeon and got fixed. But everyone's different, and for some, alternative pain control seems to work. I don't blame you for not wanting to be medicated to the eyeballs.
        No, since you ask. I do NOT really want to try the pain relief modalities - the injections, ablations etc. I'm just THAT sure they won't make enough of a difference- and delay is THE killer. I think the degeneration is too severe, and I don't want to wait. I think I've gone as far as I can with exercise too.

        There seems pressing reasons to do it now, if you can, as opposed to later, with your social and financial concerns. Doing it later means you will have the pain and other possible symptoms for a few more years, and you're not getting any younger.

        The surgery is big, but it's doable, Amanda. It just won't get any easier as you get older. I hope some of our more knowledgeable members can give you a clearer picture.
        Many thanks, Jen! Your questions helped my thinking processes - which need all the goosing they can get. I think I'm talking myself into surgery (with less ambivalence), but - didn't highlight this before - I'm increasingly concerned about the neuro and degenerative conditions. I want to make MUCH more sure my surgeon has accounted for these issues!

        Otherwise, I feel I'm just asking to be in the group of pts whose surgery did not address their problems! Ones who end up worse off...Nb I don't think this group is altogether random or unpredictable. On the contrary, I think it's quite possible that they are patients who were NOT listened to. Maybe also patients whose wheel didn't squeak loud enough about their problems.
        Last edited by Back-out; 08-20-2010, 09:45 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

        Comment


        • #5
          "Many thanks, Jen! Your questions helped my thinking processes - which need all the goosing they can get. I think I'm talking myself into surgery (with less ambivalence), but - didn't highlight this before - I'm increasingly concerned about the neuro and degenerative conditions. I want to make MUCH more sure my surgeon has accounted for these issues! Otherwise, I feel I'm just asking to be in the group of pts whose surgery does not address their problems! May even end up worse off... "
          __________________
          I agree, even if it means two surgeons, neuro and ortho (scoli) working together doing the surgery, you need more than just the average scoli surgery. Not sure if this is possible though. Good luck in sorting it all out in your head, and moving forward with this. (I grit my teeth typing that, our current prime minister uses that term all the time (election mode). It nearly does my head in and now I'm using it!)
          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

          Comment


          • #6
            JenniferG;
            I agree, even if it means two surgeons, neuro and ortho (scoli) working together doing the surgery, you need more than just the average scoli surgery. Not sure if this is possible though. Good luck in sorting it all out in your head, and moving forward with this. (I grit my teeth typing that, our current prime minister uses that term all the time (election mode). It nearly does my head in and now I'm using it!)
            And NOW you made me laugh, too - almost as important for me as thinking, and much rarer these days! Double thanks!

            I WISH I could be dealing with all this Down Under - how appropriate can you get for someone with lumbar scoliosis, huh? And Dr. Askin sounds SO great - not to mention, you! God forbid one needs a revision, though, I gather.
            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


            • #7
              Ehler-Danlos syndrome

              Ehler-Danlos (hyper-mobility) syndrome
              I wonder if this diagnosis makes your curve readings unstable. Just a thought but pain IS an indicator for surgery. I would trust HSS radiologists because they see this type of thing all the time.

              My x-rays have been misread many times due to my hardware. My laminar wires were read by a local radiologist as "sternal wires" used for open heart surgery. Another radiologist read a simple chest x-ray as "generalized bone demineralization" I ran to a bone specialist and my bone density was normal.
              It was glare from the hardware. Another time, an abdominal CAT scan showed "renal thrombus". They put me on blood thinners even though I have no such risk factors. I asked for a urology consult, had a kidney ultrasound which showed no such thing and blood thinners were stopped.

              It is good to have second opinions on x-rays and one must always bring them all for comparison because that can mean a big difference. Especially in institutions with extensive experience in the problem. Not every radiologist is the same or has the same competency.
              Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
              Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

              Comment


              • #8
                Lots of shockers about your personal experiences with Xray mis-reading - filed under category of "would have been funny under other circumstances, BUT…!"

                For the record, my problem with Cobb readings, isn’t that they've been misread so much as that it appears the Cobb angle hasn’t varied as I originally assumed (Hugely!) -- That is, based on the first “foreign” Xray the local ones were compared to: The numbers only; No one actually sat down and compared the Xrays to each other (I wish!)

                BTW I always brought ALL my images to each appointment However no surgeon was interested in anything but the most recent image. At JHU the surgeon ordered more Xrays specifically in order to compute the Cobbs after my visit: He said if I didn’t leave my HSS disk, he needed one on their system for download - hence, I posed for more! (I didn‘t want to leave it, for fear it would be mislaid on route home. SO many stories here abt just that! And those babies cost over $50. Not free for docs, as other facilities work it).

                Thus, I’ve had three series in as many months. And just for the record, THAT one was read at JHU as 51* and 54* L Cobb, by the radiologist and surgeon, respectively!
                Last edited by Back-out; 08-29-2010, 07:10 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

                Comment


                • #9
                  Hi Amanda,

                  Just reading your recent thought process, it seems to me you really should at least address the neuro problems now before the insurance runs out. So, I think you're on the right track consulting neuros about this. They need to be sure they can address both the pain and incontinence in any surgery they do. Maybe you can get that fixed with some disc procedures and skip the scoli surgery??? At any rate, it's worth asking. Now, one important thing is to pinpoint where the pain is coming from. If it's from the scoli, then that may be more difficult. But if it's a disc issue, you could have better luck. Good luck! Keep us posted.

                  Evelyn

                  P.S. No, obviously you shouldn't have this surgery for "convenience," but you've got a lot more going on than just that.
                  age 48
                  80* thoracolumbar; 40* thoracic
                  Reduced to ~16* thoracolumbar; ~0* thoracic
                  Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
                  Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
                  Not "confused" anymore, but don't know how to change my username.

                  Comment


                  • #10
                    Thanks much, Evelyn!

                    Yeah, I DO need to see neurosurgeons for sure (though consults will be covered under Medicare too, of course). "Funny" (NOT) I've been feeling medically underprivileged all these years because of having to "make do" with a neurologist to deal with my bad back. Now it's dawning on me that my neuro issues are unusually significant compared to most scoli pts.

                    You'd think my neurologist would have pricked up his ears a bit more about this...

                    Or then again, I wonder if this is one of those situations where a diagnosis is more prevalent, but it turns out to be less a function of more conditions, and more a function of greater focus and more expertise about the problem (e,g,, childhood autism).

                    In other words, maybe having had a neurologist (almost) as PCP - along with annual spinal MRIs - has led me to focus on and identify more neuro conditions. Reverse, again. Working from greater diagnostic acumen to more apparent positives in the area.

                    DOES stand to reason that someone having so many spinal MRIs is going to end up with more spinal neuro diagnoses! A terrific young spinal neurosurgeon at JHU made an astute observation early on in my cervical stenosis quest. I expressed anxiety about delaying the surgery still more as I researched my options (after being told everywhere, that even the mildest jolt meanwhile meant risking total paralysis from the neck down - and a ghastly death within minutes!).

                    "Well, I don't know you need to worry THAT much about it", he said slowly. "After all, you only got the diagnosis by sheer chance after a car accident. You didn't even have much symptomatology. Just imagine how many people in the general population have severe cervical stenosis, but never even find out. Yet how many people suddenly experience total paralysis? "

                    This was very reassuring.
                    Last edited by Back-out; 08-20-2010, 10:42 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

                    Comment


                    • #11
                      Son: "You were fine until you got the diagnoses". Iatrogenic spinal invalid?

                      My son told me I was "fine" until I got all the spinal neuro dxes at my first ever neuro appointment. That's when he socked it to me abt the MRI results ("never saw a worse spine" etc.).

                      I admit there is SOME truth to this. I walked into his office feeling pretty good, and staggered out thoroughly shaken. I was sure I'd be damned lucky to get home without an ambulance. This definitely factored into my not returning to the gym (where I'd been headed when being plowed into by that maniac van driver). Except for the recent sacral crap (at least, that's how I see the origin or the incontinences and pain), I probably would have been much better off if I hadn't hadn't gotten all these diagnoses - and the white faced delivery of my neurologist...It all definitely "helped" me start feeling so fragile.

                      Maybe I should make sure the issues are explained and dealt with (to the extent possible) but after that - adopting a more que sera sera attitude might do me more good. I'm NOT on my deathbed. If this makes sense. But yes, the pain IS primary - and that's real.

                      If only I DID know for sure what's causing it. No, I do NOT think the scoliosis is creating the incontinence. Or rather, what anyone can figure, is that the nerves governing elimination are being pinched. (Duh! But what does the differential dx mean in application? WILL ASK!)
                      Last edited by Back-out; 08-20-2010, 10:54 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

                      Comment


                      • #12
                        YESSSS! FINALLY, SOME GREAT NEWS. "Dr. So-Far-So-Good".

                        First of all, I'M IN LOVE. Dr. Christopher Shaffrey (Charlottesville, VA of The U. Virginia). Only one problem to iron out until he's "Dr Right". That's saying a TON considering all we had to cover in our initial appointment last Monday.

                        Good thing I started zeroing in on the neuro issues, however belatedly...Starting w/ this last consult, anyhow. It's not that I gave him any different info, but that I emphasized it. To review, Dr. C. Shaffrey (a three month wait) was the doc of whom I have had great hopes because of
                        a) his rep (bless you, DailyStrength who underlined it - he's her doctor! And LindaRacine also thinks highly of him.)
                        b) he's a deformity specialist (100 - 150 ops/year)
                        c) board certified in BOTH Neurosurgery and
                        d) Orthopedic surgery.
                        e) Knock 'em dead CV and also (pinch me, am I dreaming?) a SUPER Mensch. FWIW don't forget his first name if you Google him. His bro is a neurosurgeon too!

                        Dr. Shaffrey is the one I 'd feared would be too "Conservative" to take me on - not in time for my deadlines, anyhow. He's reputed NEVER to OK surgery until the patient has tried "everything" first, over years. That’s because of how seriously he takes The Op. ("Everything" = various pain relief efforts, e.g., injections etc....the stuff I scarcely touched. Cf. getting off to a late start, etc.

                        He summed me up as follows (paraphrase):

                        "If it were 'just' your scoliosis, I'd have said surgery was elective for now. However, because of your neuro problems (especially the urinary and fecal incontinences ) - you're in a complex category which is NO LONGER elective. That's especially referencing the info from your CT myelogram, four new MRIs, the urological workup (please send me the "CMG" results) and the 'facet joint injections that didn't help'."

                        So! Looks like I got all that background work done just under the wire...Whew! Man, in ScoliSPEAK, I'm so bad, I'm good - for these purposes.
                        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


                        • #13
                          The "yes, but..." (And more on why I'm still floating on air)

                          Naturally, there's a problem (IMO) requiring more investigation, though.

                          He's the ONLY surgeon (of six-seven top notchers) who thinks he can do me w/o staging. All posterior, i.e., without anterior "reinforcement", not even XLIF. Considering the severity of my congenital flatback this scares me a LOT. (I think sagittal imbalance, along with DDD and lumbar stenosis), is the main cause of my pain. He and I need to talk about it more - and lickety split.

                          Because we DID have so very much to talk about Monday on account of all the neuro stuff (including a quicky neuro colon check!), I have to return soon for what amounts to the rest of my appt. - to cover his surgical plan (hasn't formulated it yet - thank you, dear Dr. S for not rushing this!) and more abt deformity issues, per se.

                          From his POV that means a joint decision about where the fusion would start in T spine (Knock me over w/ a feather! He's the first MD who's thought to include me in that thinking!!!!! Where has he been all my life? Did I say I'm in love?) He mentioned PJK - heh! Was I prepared?

                          From MY POV, it will also focus on aspects of the lordosis - possible staging, choice of metal, possible osteotomies, etc. All issues I know of starting here.

                          More later. I really DO need to check out the staging business and thus am continuing with other appts., meanwhile. It's mostly because with my time lack, I dass't risk assuming ANYTHING. The purpose now, though, is NOT "dating around”. I hope and pray he and I can iron out this staging business, together. (For the first time. I feel there’s a dialogue and a partnership).

                          And for the first time, I also feel REAL hope, thanks to Dr. Shaffrey. There is no substitute for hope, as you all know.

                          I doubt there is another adult deformity surgeon in the US with that dual certification - and there’s much else to make me feel my stars may FINALLY be aligning. OMG he's even at a relatively drivable distance, from Nowheresville, PA where I dwell. Facility is excellent too (I.e. if there's a "complication" I can be taken care of there instead of our local deathtrap). And he is such a MENSCH. No wonder I'm floating 6" above the ground. ))))))))))
                          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


                          • #14
                            OMG I think she's done it!

                            I feel your excitement and anticipation all the way to Queensland! Fantastic post Amanda. It sounds like, as you said, your stars are aligning. I hope whatever future follow-ups occur, things continue to fall into place. You've waited long enough, done your homework, you just need that luck to continue!

                            <thumbs up>
                            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

                            Comment


                            • #15
                              Thanks you so much for your Permacheer, Jen (kind of like Permafrost only the opposite )

                              I'm crossing fingers and more!

                              http://picasaweb.google.com/realityt...CMfM0oHX5b23BA

                              Here for reference on my concern abt flatback, are my first ever Xrays posted - badly. Hopefully, by clicking on the images (twice) followed by clicking on the Zoom icon in upper right (magnifying glass image) the whole image will enlarge so most of the detail will be visible.

                              Separate thread too. All comments and feedback appreciated!
                              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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