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

[Back-out]

And worry about Shaffrey - tomorrow's appt...

Anyhow, I do NOT think it necessary to assume that the reasons I was given are the "real ones" . I DO hope I'm able to unravel them, in the end. And I also hope Bridwell doesn't mess up my relationship with Shaffrey! Wow, would that ever be non-Kosher if he does! However, I've found out on countless occasions that professionals OFTEN violate confidentiality, among friends. That refers to school personnel, as well as physicians. After all, to whom are they primarily loyal? Their buddies or strange patients appearing out of nowhere?

And I'm not about to burn my bridges with Shaffrey until I have other bridges built. Or unless I myself decide I have fears about his surgical approach. The whole thing is extremely delicate, HUMANLY. Physicians are much more "ordinary" in their motivation than patients realize - WANT to realize...I remember once a surgeon wrote a really off-the-wall (negative and inaccurate) report on me. Discovered when I requested my records. An anesthesiologist I discussed it with, hinted that orthopedic surgeons tended to make such "pre-emptive" reports about patients who "asked many/too many questions".

He said that's because their experience taught them such patients were more apt to be dissatisfied and to sue them (they're already the most sued professionals). I contested the report in a nice letter and it was rewritten - important in my permanent file! Anyhow, what goes on behind the scenes with surgeons is not necessarily what we'd like to think - that is, determined by the pt's best interests, etc.

Just some musing, associated with this issue. After all, I need to deal with it tomorrow when I meet with Dr Shaffrey again. And no, I'm not about to give him any grounds to reject me as I discuss surgical issues with him. There's SO much which can influence a surgeon's decision to accept a patient or not - and not what we'd like to believe. What's more it will really demoralize me if he drops me too! And note, if it DOES happen, I expect it to be done on a pretext (but really to be based on contact with Bridwell).

I want to understand his intentions and capabilities, and then make the decision based on MY best interests! It's already worrying that I've made a bit of a fuss about scheduling based on my insurance issues. Staff persons also can turn surgeons against accepting patients- fairly or unfairly.

The only doctors who DON'T fine tune such decisions are surgeons who are NOT "in demand". This is lucrative surgery, and only less "popular" surgeons fail to drop "undesirables" - ones who just MIGHT be a nuisance in any way. Medical issues are only one factor - often the least of them. I was very unhappy to note Bridwell's inquisitiveness about prior surgeon consults - especially since he was the only surgeon who also asked for patients to sign a waiver. NOT a coincidence I feel sure. That plus asking why the surgeons had turned the pt off (cleverly worded to elicit damning info about the pt him/herself).

God help me, if Dr Bridwell has burnt my bridges for me! It's already suspicious that I haven't received his consult notes by now. I caution the rest of you to look "under the rugs" about physician decision making - especially if you want to maximize your own control of a situation...It's scary.

[JenniferG]

I hope you are pleasantly surprised tomorrow, and find that some or all of your fears were unnecessary. Meantime, can you ring Jackie and ask for your notes to be faxed/emailed so you can go over them before your appt? Judging by what else has happened, I am not hopeful that this simple request might be achieved, but it might be worth the try?

I hope you get some encouraging news at your appt with Shaffrey tomorrow.

[mbeckoff]

I hope that your appointment goes well today .

Please come back and let us know

Melissa

[Back-out]

UPDATE - new appointment. (Whew )

Many thanks Jennifer, Melissa and other warm-hearted respondants!

Just returned from humongous all day drive to Dr Shaffrey (five hrs each way - taken by saintly volunteer retiree who drove me for free. RT airfare otherwise $750 - plus cabs and hotel. SO many good people in the world, aren't there?)

APPOINTMENT WENT - NOT PERFECT- BUT GREAT! (hedging my bets )

And FWIW I should have stuck with my "reality testing response" (before I got paranoid, in spite of myself) Shaffrey had NOT been contacted by Bridwell.

In the end, I just asked "innocently" if he HAD - as if I didn't know it would have been a massive breach. That followed a natural discussion where I expressed concern about Dr B's rejection, (And, that, in turn came after I'd bowed out of new Xrays, after springing the new ones I'd brought from Wash U - would have been identical).

The topic of having been at Wash U was an easy transition, especially after Dr. S. had already reiterated much of what he said before - about my neuro problems. That is, before my bringing up Bridwell alarm, Dr. S. had already, on his own, made a stronger case for the incontinences being spinal. That was based on the elaborate URO work-up I'd sent him (at his request) and also returning to that CT myelogram (Dr. S: "The L3-L4 level really IS terrible...").

Some times one would rather be right than healthy - relatively speaking!

I DID raise the subject of my deep concern about his conviction he could "do me" in six hours (that's down two! ) - he said he had some new "ideas" on how to approach me.

Pointed out that though I hadn't intended to conduct such a survey, because of my "process of discovery" it had amounted to that, and... "well, five out of six think I require two stages...". Said, I didn't presume to second-guess him, but OTOH I was obliged to call this natural concern to his attention.

Basically, he responded without offense, agreeing that every surgeon I'd seen was excellent ("I'd be glad to have any of them operate on a member of my family") but...but...

He pointed out he DID do at least a hundred of these surgeries a year, and that... ahem, his results had been good, guite good (specs given - impressive ones, though we both agreed not to applaud yet "so as not to jinx [my own] outcome"). So I needed to just think about things a bit more, and meanwhile my surgery date stands (Dec 28th with another pre-op discussion pending).

More details later. As with the CT myelogram accord, everything was much the same - i.e, gratifying that we agree, wish it were not about inherently troubling issues.

For example, clearly, my situation IS complex and uncertain - not the severity of my curve but the multiple conditions which make it hard to arrive at definitive diagnoses OR approach (OR solution).

If that seems contradicted by the shortness of the surgery he projects, it's not. In fact, that's a function of one of the problems (one I brought up) - namely, my need for more cervical stenosis surgery. He agreed about this too - based on a lot of evidence: my brand-new MRIs, the CT myelogram and (worst) the neuro exam today which shows it - i.e hyper-reflexia and something called "Hoffman's sign " -- means stenosis at that level is returning...

However, although he likes my M.I. (minimally invasive) surgeon - Dr. JHO - he thinks probably I should delay it now owing to time frame. Also it's another reason to start the scoli fusion lower - away from the (problem) neck. Also another reason my surgical time would be shorter.

So it all hangs together, but though it's good we're on the same page (and WAY off the Bridwell page. ), it's still not a happy page. Same story for instance, re my lumbar spinal stenosis . Now he too is not sure it's causing the incontinences - as opposed to Tarlov cysts. He also wonders if they're not a likelier culprit. I told him why I suspected so - detective work I'd know, residing in my body (and thanks to Dr. Google).

However, though agreeing about this too, we both understand why they can't be addressed w/scoli surgery and why doing a L. decompression IS the best neuro step right now (why Tarlov cysts may never be addressable, for that matter ). So again, more good that we're seeing eye to eye, but more bad that we're seeing eye to eye on what is essentially BAD NEWS.

That's OK. I didn't expect him to make bad things go away. It is really more reassuring to feel he can HELP me - at least, to the degree I can be helped. It is a fine thing to have a neurosurgeon you get on with, if you have a bunch of nasty neuro conditions! Next best thing, to not having them.

If you're wondering, yes - I'm still trying to come to terms with his expecting to operate in about a third the time as the others. And more frosting on the "too good to be true" cake is that he ALSO says he sees no reason for me to expect more surgery - meaning more surgery for complications, not for conditions that can't be addressed now. Says that is NOT a foregone conclusion.

(He pointed out in context, how many revisions he does! He has a such a nice way of saying he knows the score ). He won't find anywhere a choir more ready to be preached to than me - yet one requiring convincing not faith alone, to be converted .)

For those who've followed my SCOLI Anxiety Neurosis - I began my quest in March with two well-reputed NYC docs telling me (on their own) that I should expect more surgery down the road, within a few years tops. Since I'd JUST (barely) come to terms with what THE OP was apt to be like - this revised expectation was a stunning set-back, if only in my demographic (for whatever reason. Never clarified).

Hearing this caused a month's tachycardia and much increased (on-going) anxiety. Since then, MOST lessons in the school of Reality, have reinforced those fears - the latest being the belated feedback from our MIA comrades, Brenda and Joy. (I know I'm not alone in this, but am still ashamed to personalize the tragedies of others...Continuing to pray for them both - and thus for all of us.)

If Dr. Shaffrey says this prognosis is NOT true for me, it would be like permanently changing my weather forecast. And, of course, he's the most able not only to "bear good tidings" (out of principled good cheer?), but to actually MAKE them true! That would amount not to a guarantee - impossible - but at least, to a very important reformulation of "The Odds". Could it be...?

In response to all this, my (rational) scales are now swinging up and down between the following:
a) "Would such a fine surgeon (with such a fine track record) lead me to expect he can - successfully - get away with such minimal surgery IF HE CAN'T ?" against b) "But am I ' doctor shopping' to find someone who says what I want to hear?".

Meanwhile, it just feels good to return home after a successful trip - finally. Albeit without all problems resolved - but that's the nature of the Beast. And now to bed after delving into either Sherlock Holmes or my latest Pearl Buck - looks less shmaltzy than prior! So all's well that - ends well, provisionally anyhow! Thank you all so much for the encouragement. I felt embarrassed to have confided so much, but now I'm glad I did! You helped!!

[foofer]

Amanda,

This sounds like a pretty good outcome Your experience with the previous doctor resonated with me -not with my own MD experiences, but just with certain life situations that occur, leaving you utterly perplexed and fighting for your sense of reality.

I kept thinking that if I had to make something up fast about what happened to you, it would have been that for whatever reasons, as others have surmised, this doctor was not feeling up to the task of your particulars. So he shifted the reasoning just to move you along quickly, leaving you reeling. Sounds like it's happened more than once in the last couple weeks. So you are out money, time, energy, and a few zen cells.

The up side is that hopefully, this will cast your present doctor in an even more favorable light as you further digest this month's events. It really sounds like your connection with him is quite good- it just works. I'm thinking you will need to suspend your thoughts of your other miserable experience and know that some day you will more than likely discover what really transpired, and at that point you will no longer care.

I'm so happy you had a good day!

[JenniferG]

Hi Amanda. How gratifying that what transpired with Dr. Shaffrey was as good as could be expected plus a little more. Also, very glad that you coped with the 10 hour drive with the generous volunteer, and avoided another big expense. The difference a day (or two) can make eh?

[mbeckoff]

Amanda, I am so very happy for you that your appointment went well and also that it was not an huge expense for you to get there. Glad that things are looking better today

God bless

Melissa

[Pooka1]

Well I'm glad you were able to cut to the chase somewhat on this.

I think you are in a very tough situation with surgeons honestly disagreeing on how to proceed (or not). Your case is complex and the constellation of conditions you present with might be rare even for the most experienced of the surgeons you have consulted. They may not know or have a clear guess as to how it will play out. They will not operate if they don't think there is a very good chance it will help; the surgery is too big.

Unless they are pretty sure it will help, I can well imagine some surgeons thinking this will end up as a law suit and backing off. I can imagine that unless they think they can succeed, they aren't going to touch you even with a million waivers.

You know your situation best but were it me with many conditions, I would create some sort of table (or large Excel file!) wherein I list diagnoses, surgeons, and their comments on what they think will help. You have conditions that you want addressed and you need to cut to the chase on what needs to be done and in what order. Were it me, and only based on your posts, I would be triaging the conditions as to seriousness and then addressing them in that order. I would be talking exclusively and constantly with experienced neuro guys to figure out what can be done about the incontinences. Once that is either fixed or put to bed, I would next tackle the scoliosis and any other ortho problem. Of course I am not in your skin but that would be my game plan based on what you wrote. Maybe you are doing this.

You got dealt a lousy hand and I am very sorry about that. But you have a marvelous attitude and are very wise in many ways. Try not to get bogged down in the Peyton Place machinations although I do think some (a relative few) are relevant to how you proceed. Try to push these feelings, suspicions, etc. aside and focus exclusively on the technical/medical issues. That's how the surgeons roll anyway.

Just keep your eyes on the prize and move forward always. At some point I hope you can put this in a bag and ship it off having done all you can.

[titaniumed]

Amanda

I'm so sorry that this has become such a stressful situation, but then again your attitude is fantastic. You have the ability to be knocked down, and you get up immediately! We could use you on the football team.

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.

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.

I wouldn’t worry about Dr Bridwell at all. All surgeons do not like black marks on their records even if they pick to do extremely difficult surgeries. Yes, it would be nice to know what he thinks, but since he is out, don’t stress over him, brush that grass off and move on.
Ed

[kennedy]

Amanda

I'm so sorry that this has become such a stressful situation, but then again your attitude is fantastic.l
I agree with Sharon and Ed that even the best surgeon's don't have the best ancers
if i was in your shoes i not give up and get a 2nd opinion
i hear fantastic things about Dr Gupta brother in chicago
I'm his brother munish gupta patient hear in california

[twinsmom]

Sorry

Hi Amanda,

I have been reading this and although my experience with this is all adolescent scoliosis, I empathize. So sorry! Second Opinions - especially when you are very intelligent - put you through - not to mention your back - the rack. You are literally on your own and you can build a nest with all the
strands of questions that you realized you should have asked or with those that really weren't handled well. Both of ours were shorter than we were led to believe. So hard because you set your sights on getting light on your problem. A medical exam room is an awful place for a serious medical discussion. And we really don't get that anymore. The onus is all on us and so many of us are stressed!!!!!!!! And we all know docs are very careful in what they say. What you can get from a docfriend versus the white coat person can be eye opening. If you can find a doc friend to look over your records- I think you might get a sincere and kind assessment. I know these folks are hard to find. But this was the most helpful for us. We didn't follow all his advice but it was so helpful to get a true medical reality check.My perceptions were right! Good luck and I hopes ours goes to you! Mary

[Back-out]

about original thread deliberations

Many thanks for your understanding and encouragement! Here especially about my self doubts about this "rejection". I am no longer puzzled or upset about the Dr B. issue nor do I feel compelled to send him the CT-myelogram excerpt

I 'm pretty sure - for various reasons - that I understand what went on, and no longer feel personally affected. But I especially caution Mike to avoid taking it personally, too. It's a shame she lost much more money and time than I did! I'm sure we are not alone.

I remember a man I was friends with over a decade ago - one I admired very much. He was an opthamological surgeon going through a difficult forced early retirement. He'd developed a mild case of a connective tissue disorder. No one but he would have recognized he'd lost his "cutting edge" skill at that point, but he withdrew from his beloved field before he hurt someone if only by not doing his absolute best.

Deformity surgery (ugly term, I know) is a very physically demanding field of medicine - I doubt there is another more so. Undoubtedly, this is the main reason few or no women are practitioners. I imagine they train like athletes and still their professional life must be shorter than average. I remember one patient here unable to sleep the night before THE surgery and worrying online about the "what if" her surgeon had insomnia too. A sensible concern. however unlikely in most cases.

These surgeons just can't be "ordinary mortals", in many ways. It behooves them to recognize when they lose their game, in whatever way.

It must be very hard for doctors who are aging out of it, for whatever reason. I'm sure Dr. Bridwell is still a brilliant surgeon as the operations of so many of you attest. "But."

[Back-out]

And now, "ONLY" -- heh.

Now I'm "only" left with my self-examination about my choice of surgeon. . I'm feeling better and better about Dr. Shaffrey. Not that I ever felt bad; it's just that the decision is SO huge and I had/have a legitimate area of doubt. I believe Dr. Shaffrey is a great man (slightly "in" joke - he's physically a mountain of a man too! ).

I'm trying to come to terms with my issues. There are so few areas about which I know a great deal. I almost always end up making decisions less on the grounds of whatever expertise is involved and at least half, based on a personality assessment in combination with other sources of information. (For example, buying a used car! Do I know anything about cars? Ha! )

I know one thing here - and that is, I won't make any decision which will eliminate all risk or doubt about the surgical outcome (as important as the decision of surgeon is in reducing danger. Likewise, facility)

In my case, I now realize no single operation can attend to all my spinal pathology - and some may well have no solution, except in imagination. I can only make the best risk:benefit decision possible - the famous calculus we're all up against, and not just in surgery.

As I've suspected for the last few months, my main spinal complications may be neuro more than "pure" scoli ones. I'm glad I recognized the neurological aspects of my spine before zeroing in on a surgeon - not that I could have comfortably chosen one as is, even if I'd had a different universe of surgeons to choose from (for instance, if visiting surgeons and paying for the surgery had not been limiting factors).

Anyhow, right now, I'm feeling more comfortable with where I'm headed although I'm not there yet. Something new could easily occur to me, which could change the direction of my thinking (same as a few months ago, when I suddenly realized not all scoli pts. have such complicated MRIs!). I also want, hopefully, to discuss this with a physician friend, if possible.

Special gratitude to ed, foofer, Kari, Melissa, Sharon, Mary, Davis, Evelyn, Cris, Lori, Karen O, Karen, Amy, Shell, junosand! Every one of you has said something valuable and contributed to my ability to feel my way through these tortuous sands. (Choking sensation)!

I may end up with an overall safer surgery than I'd feared, but I doubt very much it will be my last. (Not a slam dunk, by any means! haHA). I need to think through a few more angles to this decision. Hoping I get to that point! You have all been so kind and patient throughout my many (VERY WORDY ) twists and turns - mental, not BLT thank G-d! I remain embarrassed but more "connected". Thank you for listening - and most of all, for caring!

[Pooka1]

These surgeons just can't be "ordinary mortals", in many ways.

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, I think they know their limits and don't view themselves as supermen. I think they are just trying to figure out a field that is more complex than rocket science, probably not as complex as brain surgery but may be best described as, "rocket surgery."

[Back-out]

few specific replies

LisaB, I believe Dr. Bridwell DID consider my data with great care. I've been told how much there is to plow through, too! It's easy to take short cuts and "wait and see" if I came back - before fine tuning feedback. (Some did just that, and maybe his experience w/Mike benefited those like me, so that he's now being more definite at an earlier point in HIS decision-making.) I'm sure those on whom he still operates are fortunate - but it's impossible to keep going forever. Can't imagine how they do for so long.

Lori, I wasn't able to afford Dr. Boachie, I wanted to see him. I like Dr Neuwirth, but I worry about aspects of his surgical plan - and New York is very hard/expensive to get to from here. (I can't drive in Manhattan nor can any one up for helping me) Very expensive to arrange surgery there, too.

Shell, I called Dr. Alpert but per his phone service, he isn't doing scoli ops any more . (?) OTOH, an archived member here said she got the feeling he wasn't keen on doing "adult" patients (think, my age ) He had made excuses not to take her mother.