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!
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!
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