I only recently returned from a completely exhausting trip to St Louis to see Dr. Bridwell - the surgeon I’ve thought of all along as a safe fall-back . That is, based on reputation and with only a niggling sorrow about not being able to see Dr. Lenke - that's both because of his schedule and the possibility I couldn‘t persuade him to take me (he’s only accepting the most serious curves now. Unless he can be persuaded for other reasons - either net deformity/problems and/or professional courtesy.
...No offense, but I couldn’t help noticing Lenke accepted one of our new members with curves no worse than mine. However, said member is a surgeon).
It was also reassuring that I knew Bridwell could fit me in within my timeline.
To my horror/astonishment he turned me down! I’m mind-blown trying to figure out what his summary “message” is. Don’t know whether I should take away that I’m too “high risk” (“If you were my sister, I wouldn’t want you to have the surgery” and also “I don’t want to make you worse than you are now.”) .
OR OTOH is my failure to pass his risk:benefit standard, less a matter of excessive risk than insufficient benefit - namely, his disbelief that I have the neuro conditions other docs diagnosed?
Bridwell and his “Fellow” told me first, they didn’t believe my dual incontinences are spinal in origin. They both started out insisting that urinary incontinence can’t result from cervical stenosis (except under very rare circumstances) - and took off from there!
Is he really a world class genius able to take upon himself the onus of contradicting FIVE neurosurgeons and my neurologist (all of whom evaluated my cervical stenosis based much on urinary incontinence - and over a period of a decade)? And can he creditably reject the opinion of my urologist (who did a $15K URO work-up, concluding my incontinence is spinal FWIW I tried to persuade her otherwise.)? And what about the three radiologists who analyzed my CT myelogram? That revealed "severe" lumbar stenosis - a word used sparingly in Medicine - and at a level that CAN cause both kinds of incontinence.
As I sat in the exam room absorbing the shock of his verdict (and trying to interpret it), at least I remembered before leaving, that the radiologists AND Dr. Shaffrey (AND my neurologist) - had all stressed that L3/4 reputedly showed massive pathology. So I stuck my head into the hall, and asked the Fellow, to please pay special attention to that part of the myelogram report. The Fellow said with a sweet/condescending smile that they HAD looked; the stenosis there was “mild”. OK, who am I to question the MDeities, then? Even with the words of OTHER MDeities? So I just sucked it up, puddling into the floor.
To make things worse, I was also in a great deal of pain because of the sleepless night traveling there, and much walking in airports. I’d really pushed myself (and it all got much worse by the time I was home too with another sleepless night and more bad luck in transit, behind me.). As we all know, painful backs can be a blessing to the surgically undecided. They help by adding to the “what choice do I have?” certainty. That is, it helps, unless we have just been pushed involuntarily into the ranks of the rejected (for surgery)! Especially after I got home and read the horrible news about our comrades, I began to interpret it as a warning to stay clear of THE OP. .
I'd paid for an extra day in case The Great Man cared to order a “bike/treadmill test”. (Jackie and I had discussed it in advance as a possibility - seems it’s a very useful test for a diff’l diagnosis of lumbar stenosis (not many doctors do it. Maybe a comment about it , later...). Meanwhile, that night back in my hotel, I stewed still more with that useless (expensive) day ahead of me before I could fly home. Finally, I regained my composure enough to pull out my CT-Myelogram and actually read over the L3/L4 section, to myself (the part reporting on the stenosis they'd denied). Next post.
Don’t know which is more sickening: if (that?) he was so utterly wrong or if (that?) he might have been right despite all those other experts saying the opposite.
OTOH how is that possible? Stenosis isn’t diagnosed by eyeballing me, but by precisely this sophisticated test - the one those three radiologists had trained for years to analyze! Could Bridwell have correctly second-guessed so many other experts more specialized than he is at this diagnosis? If it were just me questioning him it would be one thing, of course. There is this whole slew of others, though! Far more likely is it not, that at the end of a long day, he just missed reading the right passage in the report? And just for the record, I’d also brought two full CD’s of the myelogram imaging too. (Or -- was he just making excuses?)
FWIW yes, he IS chilly and aloof, but that's just his personality style. Forewarned, I was able to ignore that (thus, I still like and respect him).
Ironically, I’d been waiting for months to try to schedule seeing Bridwell at the same time I saw a Wash. U neuro-surgeon . That was in order to be SURE of having my neurological issues attended to (Seemed to me they'd been given sort of short shrift, in a few previous appointments). After all, first appointments can only be SO long - and besides, I’d reluctantly concluded my neuro issues were as or more serious than the deformity ones. Also that they were NOT one and the same!) . After all that delay, though, I’d finally been told I could only dovetail the two if I waited 'til late October and that just seemed too risky/too long to wait.
Besides, I'd recently noticed that prior surgeons HAD stated I probably also needed a “decompression”. (This meant they HAD noticed my lumbar stenosis; this was even before I’d had the tell-tale myelogram!) All in all, I decided to trust that deformity surgeons (Bridwell, especially) COULD handle this much neurosurgery! And sure enough, the "Fellow’s" first words were (intended to be reassuring) “Yeah, we can do that [meaning neurosurgery]"
Haha. NOT! At least, it looks very much to me like they missed the boat. Take a glance at the CT-Myel. excerpt (below). What do you think? What should I do? What should I think? What should I conclude?
Remember that Dr Shaffrey’s very first words to me were (paraphrase) “Ordinarily, I’d have thought you were in surgically grey area – and wouldn’t have wanted to operate. With these neurological findings, though [the CT myelogram - especially L3-L4 - and the URO workup] - it’s no longer optional surgery”. And Shaffrey is also board-certified in neurosurgery! (Yes, I told Dr. Bridwell of this difference of opinion).
The questions kept coming at me fast and furious. And once home, as you can imagine, that much worse after learning of Joy’s calamity. AM I at too much risk to submit to this horrific surgery - because of age, insufficient deformity, something personal ---or? (And WAS the neurology issue just a subterfuge?).
Lost money, lost sleep, lost time, lost morale – hard to say which tugged at me the most I don’t have thousands to throw away on useless journeys, least of all ones that age me so greatly (between the two sleepless nights and spinal damage... Meaning that by the time I'd wandered around three major hub airports, I wound up for hours in the large, deserted Philly airport lugging most of my stuff with me (can't believe I did it). This was after a five hour weather-delayed flight from Chicago – no assistance. I felt my kyphosis dragging me down like Quasimodo. Whew!)
Friend says I really MUST insist Bernie (surgical nurse) give me answers about what in the world went on behind the scenes (?). I also want to ask some "what if’s "; i.e., IF he were to operate, would he have done it in two stages? (He DID indicate I WOULD have needed a fusion from T3 - to S1 +pelvis). Knowing that helps some. Sheesh after such a hellacious trip, adding an informed opinion to my growing physician survey, makes SOME contribution, at least.
Should I – erm, “rub his nose in it” ["it" being the Myelogram report]? In a nice way, that is - i.e., politely requesting an explanation. [HAD he noted that part of the report, etc?. ] I dare say even my neurologist would like an explanation! Not to mention the extensive URO study Bridwell is blowing off. That's feasible, I guess, as he can claim, it's just ONE doctor's opinion - but not to blow off the whole science of CT-myelograms!
I feel as if I must choose between getting a well-done decompression or a good anterior reinforcement of my lordosis…Well, sort of. COULD it really be EITHER/OR? (That is, IF Bridwell had been willing to operate on me….)
I’m so confused. And fed up. Feeling kind of doomed too.
%%%%%%%%%%%%%%
Decided to edit Dr. B's name from the thread title. Sep post.
...No offense, but I couldn’t help noticing Lenke accepted one of our new members with curves no worse than mine. However, said member is a surgeon).
It was also reassuring that I knew Bridwell could fit me in within my timeline.
To my horror/astonishment he turned me down! I’m mind-blown trying to figure out what his summary “message” is. Don’t know whether I should take away that I’m too “high risk” (“If you were my sister, I wouldn’t want you to have the surgery” and also “I don’t want to make you worse than you are now.”) .
OR OTOH is my failure to pass his risk:benefit standard, less a matter of excessive risk than insufficient benefit - namely, his disbelief that I have the neuro conditions other docs diagnosed?
Bridwell and his “Fellow” told me first, they didn’t believe my dual incontinences are spinal in origin. They both started out insisting that urinary incontinence can’t result from cervical stenosis (except under very rare circumstances) - and took off from there!
Is he really a world class genius able to take upon himself the onus of contradicting FIVE neurosurgeons and my neurologist (all of whom evaluated my cervical stenosis based much on urinary incontinence - and over a period of a decade)? And can he creditably reject the opinion of my urologist (who did a $15K URO work-up, concluding my incontinence is spinal FWIW I tried to persuade her otherwise.)? And what about the three radiologists who analyzed my CT myelogram? That revealed "severe" lumbar stenosis - a word used sparingly in Medicine - and at a level that CAN cause both kinds of incontinence.
As I sat in the exam room absorbing the shock of his verdict (and trying to interpret it), at least I remembered before leaving, that the radiologists AND Dr. Shaffrey (AND my neurologist) - had all stressed that L3/4 reputedly showed massive pathology. So I stuck my head into the hall, and asked the Fellow, to please pay special attention to that part of the myelogram report. The Fellow said with a sweet/condescending smile that they HAD looked; the stenosis there was “mild”. OK, who am I to question the MDeities, then? Even with the words of OTHER MDeities? So I just sucked it up, puddling into the floor.
To make things worse, I was also in a great deal of pain because of the sleepless night traveling there, and much walking in airports. I’d really pushed myself (and it all got much worse by the time I was home too with another sleepless night and more bad luck in transit, behind me.). As we all know, painful backs can be a blessing to the surgically undecided. They help by adding to the “what choice do I have?” certainty. That is, it helps, unless we have just been pushed involuntarily into the ranks of the rejected (for surgery)! Especially after I got home and read the horrible news about our comrades, I began to interpret it as a warning to stay clear of THE OP. .
I'd paid for an extra day in case The Great Man cared to order a “bike/treadmill test”. (Jackie and I had discussed it in advance as a possibility - seems it’s a very useful test for a diff’l diagnosis of lumbar stenosis (not many doctors do it. Maybe a comment about it , later...). Meanwhile, that night back in my hotel, I stewed still more with that useless (expensive) day ahead of me before I could fly home. Finally, I regained my composure enough to pull out my CT-Myelogram and actually read over the L3/L4 section, to myself (the part reporting on the stenosis they'd denied). Next post.
Don’t know which is more sickening: if (that?) he was so utterly wrong or if (that?) he might have been right despite all those other experts saying the opposite.
OTOH how is that possible? Stenosis isn’t diagnosed by eyeballing me, but by precisely this sophisticated test - the one those three radiologists had trained for years to analyze! Could Bridwell have correctly second-guessed so many other experts more specialized than he is at this diagnosis? If it were just me questioning him it would be one thing, of course. There is this whole slew of others, though! Far more likely is it not, that at the end of a long day, he just missed reading the right passage in the report? And just for the record, I’d also brought two full CD’s of the myelogram imaging too. (Or -- was he just making excuses?)
FWIW yes, he IS chilly and aloof, but that's just his personality style. Forewarned, I was able to ignore that (thus, I still like and respect him).
Ironically, I’d been waiting for months to try to schedule seeing Bridwell at the same time I saw a Wash. U neuro-surgeon . That was in order to be SURE of having my neurological issues attended to (Seemed to me they'd been given sort of short shrift, in a few previous appointments). After all, first appointments can only be SO long - and besides, I’d reluctantly concluded my neuro issues were as or more serious than the deformity ones. Also that they were NOT one and the same!) . After all that delay, though, I’d finally been told I could only dovetail the two if I waited 'til late October and that just seemed too risky/too long to wait.
Besides, I'd recently noticed that prior surgeons HAD stated I probably also needed a “decompression”. (This meant they HAD noticed my lumbar stenosis; this was even before I’d had the tell-tale myelogram!) All in all, I decided to trust that deformity surgeons (Bridwell, especially) COULD handle this much neurosurgery! And sure enough, the "Fellow’s" first words were (intended to be reassuring) “Yeah, we can do that [meaning neurosurgery]"
Haha. NOT! At least, it looks very much to me like they missed the boat. Take a glance at the CT-Myel. excerpt (below). What do you think? What should I do? What should I think? What should I conclude?
Remember that Dr Shaffrey’s very first words to me were (paraphrase) “Ordinarily, I’d have thought you were in surgically grey area – and wouldn’t have wanted to operate. With these neurological findings, though [the CT myelogram - especially L3-L4 - and the URO workup] - it’s no longer optional surgery”. And Shaffrey is also board-certified in neurosurgery! (Yes, I told Dr. Bridwell of this difference of opinion).
The questions kept coming at me fast and furious. And once home, as you can imagine, that much worse after learning of Joy’s calamity. AM I at too much risk to submit to this horrific surgery - because of age, insufficient deformity, something personal ---or? (And WAS the neurology issue just a subterfuge?).
Lost money, lost sleep, lost time, lost morale – hard to say which tugged at me the most I don’t have thousands to throw away on useless journeys, least of all ones that age me so greatly (between the two sleepless nights and spinal damage... Meaning that by the time I'd wandered around three major hub airports, I wound up for hours in the large, deserted Philly airport lugging most of my stuff with me (can't believe I did it). This was after a five hour weather-delayed flight from Chicago – no assistance. I felt my kyphosis dragging me down like Quasimodo. Whew!)
Friend says I really MUST insist Bernie (surgical nurse) give me answers about what in the world went on behind the scenes (?). I also want to ask some "what if’s "; i.e., IF he were to operate, would he have done it in two stages? (He DID indicate I WOULD have needed a fusion from T3 - to S1 +pelvis). Knowing that helps some. Sheesh after such a hellacious trip, adding an informed opinion to my growing physician survey, makes SOME contribution, at least.
Should I – erm, “rub his nose in it” ["it" being the Myelogram report]? In a nice way, that is - i.e., politely requesting an explanation. [HAD he noted that part of the report, etc?. ] I dare say even my neurologist would like an explanation! Not to mention the extensive URO study Bridwell is blowing off. That's feasible, I guess, as he can claim, it's just ONE doctor's opinion - but not to blow off the whole science of CT-myelograms!
I feel as if I must choose between getting a well-done decompression or a good anterior reinforcement of my lordosis…Well, sort of. COULD it really be EITHER/OR? (That is, IF Bridwell had been willing to operate on me….)
I’m so confused. And fed up. Feeling kind of doomed too.
%%%%%%%%%%%%%%
Decided to edit Dr. B's name from the thread title. Sep post.
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