i apologize for not "checking in" before now -- and hope to post something worth a read tomorrow or tuesday. my legs are giving me fits, and the pain/fevers/chills from the infected shoulder make me a very uninteresting person, indeed.
saw the surgeon thursday, and remembered why he and his staff will always be heros to me. what they are attempting to do for me is technically and medically difficult, something my go-to-guy doctor and i both tend to forget. so it mattered to take a few minutes thursday to recognize that fact.
the down side of such emoting was the ensuing hug fest -- which rapidly degenerated into friendly shoulder pats that nearly made me scream.
there was one little bit of unexpected news.
dr. shoulderman was trying to walk me through the process and i was only half-listening, as this is not exactly new territory. he'd gone over the ins-and-outs of the first surgery, talked about the need for a new infectious disease specialist, the PICC line, and 6 weeks or so or intravenous antibiotics. (he briefly cradled his head in what might have been exasperation at the news that i was still taking oral doxicycline when surgery was 10 days away. so shoot me... no one told me to stop and it just did not occur to me that it would screw up the culture sampling. i stopped taking it thursday and pray that was soon enough for it to exit my tissues.)
he paused, and i entertained notions of actually going home and curling up under a few inches of soft flannel, as i just could not get warm. i have even resorted to covering my feet, something that causes severe burning pain, as even my feet feel cold these days -- and this, after a decade of sleeping with them uncovered. i also thought about trying to line up the roto-rooter treatment for my port, which, at the moment, will allow stuff to be administered but will not, in turn, surrender any blood for testing. and, to be honest, there were some thoughts of stopping somewhere for lunch. i was thinking taco bell when dr. shoulderman's voice took on a new tone...
"after 3-6 months, if all goes well, we will want to go in and remove the spacer, of course. if it appears successful and we find no obvious evidence of infection, there are then two choices."
i think i probably smiled. i didn't know i had choices! this was great news! i thought there was just the one option, the option we had bandied about for over a year -- the old reverse total shoulder replacement. a woman with choice, a woman with options, now that's a happening woman. i put taco bell and roto-rooting plans away, and tried to pay attention.
"we can put in a new prosthesis..." he said this in the most desultory way, as if it were something too awful to contemplate. odd, i thought, since that is, of course, the best outcome -- a clean shoulder, a new bit of bionic wonder.
"i thought of you last week as we finished surgery on a gentleman in much the same situation. i put in a new prosthesis, the frozen sections looked good, it seems like he had beat the infection. then eight days later, i get a call saying that something has grown in his cultures -- p. acnes.(this is the major suspect in my case, as well) -- and now he is back on the merry-go-round."
why, dr. shoulderman, that sounds suspiciously like a cautionary tale!
more sober talking, more somber scenarios in which it looks like i have beat the pathogens all to pieces when, behold! the suckers were just lurking in the hope of reasserting themselves on some new implant. there were dire descriptions of the state of my bones (no news there), and at the opportune moment, shoulderman shifted gears...
"and so it may very well be that at the time of the second surgery, i will have to assess the situation and consider leaving you with a flail shoulder."
the smile stayed on my face because i had not the least notion of what a flail shoulder was. i knew the term flail chest from some EMT courses way back when -- and knew it to be a horrible trauma that basically unhinged the rib cage in folks who slam into the steering wheel in a car wreck. inane smile still plastered on my face, i interrupted to make my inquiry into our brave new lexicon.
turns out that flail shoulder is the polite surgical term for no-freaking-shoulder-at-all.
in truth, this result had been mentioned before, but only in passing, and only, i thought, as a conversational oddity, a bit of ripley's believe it or not. i remember, most specifically, my go-to-guy doctor whispering, several years back, "this is not going to end well."
dr. shoulderman, kind and handsome, talked on. some people were able to train themselves to use scar tissue as a kind of new muscle, thereby allowing for some arm movement. i was particularly thrilled to hear that "some people can learn to bring their hand to the mouth."
unfortunately, even the most scintillating of conversations have to end (this one, as that one!). but i've carried on the talk inside my head, a few minutes at a time, more if the fever spikes a good bit and my frustrations pop out. i keep imagining what ifs that don't help one bit but are nonetheless all too probable. how will i do x now, how will i do y?
within two days, fred was already able to think productive, forward-inclining thoughts. yesterday, he even inquired about the possibility of an external bit of hardware with which i might regain control of my left arm, once it's been rendered flail. i was dismissive, as it seems like dr. shoulderman would have brought that up right away in his extemporaneous powerpoint presentation. fred, as usual, is a great point man, and a quick googling of "flail arm" turns up many examples of braces, hooks, and goth-inspired hardware that can be strapped on, and, if nothing else, used to make me look fierce, tough, and borderline biker.
i don't know whether it is the stress of it all, suddenly, or what, but my left leg is now the fugly spitting image of the right one, and both are spasming to the beat of a whacked-out drummer. i refuse to repeat the die hard description that one crps-er after another has ripped off and reiterated: "imagine being doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week, and knowing it was never going to be put out..." it's... depressing.
dr. shoulderman is wonderfully cognizant of my crps, and though we rarely discuss it, he is well-informed, as every orthopedic surgeon should be. he has been distressed by the obvious crps spread, and the condition of my arms, as surgery anywhere is never wise with crps on board, and repeated surgeries in an area of lots of rsd activity is what polite society calls a "no-no." so he decided to order repeat regional blocks in an effort to prevent further spread. it was comforting, reassuring -- he cited a recent study, and did so in depth, an impressive feat for a man whose brain must be chock full o'important stuff.
tomorrow will be a long and uncomfortable day. it's off to the hospital we go, for testing, testing, testing, and -- i predict -- some arguing with the billing office. they say i owe over $3000 from a few years back -- they didn't file with my insurance company until 18 months passed from the date-of-service, and by then, i had switched to a new insurance, and -- of course -- the former company refused to pay. if they make this admission contingent on paying that bill? i will be in a tough spot.
ah, and tomorrow they'll culture skin and nares for mrsa... i have cultured positive several times before, therefore spending my time in isolation, with a very frustrated fred having to wear those awful yellow paper gowns, and be gloved up.
maybe i can have them give me the roto-rooter port clean-up tomorrow. if we have to spend the day, may as well check off as many chores as possible.
so that's what has me away from the blog... although my heart is always at the manor, safe in marlinspike hall.
saw the surgeon thursday, and remembered why he and his staff will always be heros to me. what they are attempting to do for me is technically and medically difficult, something my go-to-guy doctor and i both tend to forget. so it mattered to take a few minutes thursday to recognize that fact.
the down side of such emoting was the ensuing hug fest -- which rapidly degenerated into friendly shoulder pats that nearly made me scream.
there was one little bit of unexpected news.
dr. shoulderman was trying to walk me through the process and i was only half-listening, as this is not exactly new territory. he'd gone over the ins-and-outs of the first surgery, talked about the need for a new infectious disease specialist, the PICC line, and 6 weeks or so or intravenous antibiotics. (he briefly cradled his head in what might have been exasperation at the news that i was still taking oral doxicycline when surgery was 10 days away. so shoot me... no one told me to stop and it just did not occur to me that it would screw up the culture sampling. i stopped taking it thursday and pray that was soon enough for it to exit my tissues.)
he paused, and i entertained notions of actually going home and curling up under a few inches of soft flannel, as i just could not get warm. i have even resorted to covering my feet, something that causes severe burning pain, as even my feet feel cold these days -- and this, after a decade of sleeping with them uncovered. i also thought about trying to line up the roto-rooter treatment for my port, which, at the moment, will allow stuff to be administered but will not, in turn, surrender any blood for testing. and, to be honest, there were some thoughts of stopping somewhere for lunch. i was thinking taco bell when dr. shoulderman's voice took on a new tone...
"after 3-6 months, if all goes well, we will want to go in and remove the spacer, of course. if it appears successful and we find no obvious evidence of infection, there are then two choices."
i think i probably smiled. i didn't know i had choices! this was great news! i thought there was just the one option, the option we had bandied about for over a year -- the old reverse total shoulder replacement. a woman with choice, a woman with options, now that's a happening woman. i put taco bell and roto-rooting plans away, and tried to pay attention.
"we can put in a new prosthesis..." he said this in the most desultory way, as if it were something too awful to contemplate. odd, i thought, since that is, of course, the best outcome -- a clean shoulder, a new bit of bionic wonder.
"i thought of you last week as we finished surgery on a gentleman in much the same situation. i put in a new prosthesis, the frozen sections looked good, it seems like he had beat the infection. then eight days later, i get a call saying that something has grown in his cultures -- p. acnes.(this is the major suspect in my case, as well) -- and now he is back on the merry-go-round."
why, dr. shoulderman, that sounds suspiciously like a cautionary tale!
more sober talking, more somber scenarios in which it looks like i have beat the pathogens all to pieces when, behold! the suckers were just lurking in the hope of reasserting themselves on some new implant. there were dire descriptions of the state of my bones (no news there), and at the opportune moment, shoulderman shifted gears...
"and so it may very well be that at the time of the second surgery, i will have to assess the situation and consider leaving you with a flail shoulder."
the smile stayed on my face because i had not the least notion of what a flail shoulder was. i knew the term flail chest from some EMT courses way back when -- and knew it to be a horrible trauma that basically unhinged the rib cage in folks who slam into the steering wheel in a car wreck. inane smile still plastered on my face, i interrupted to make my inquiry into our brave new lexicon.
turns out that flail shoulder is the polite surgical term for no-freaking-shoulder-at-all.
in truth, this result had been mentioned before, but only in passing, and only, i thought, as a conversational oddity, a bit of ripley's believe it or not. i remember, most specifically, my go-to-guy doctor whispering, several years back, "this is not going to end well."
dr. shoulderman, kind and handsome, talked on. some people were able to train themselves to use scar tissue as a kind of new muscle, thereby allowing for some arm movement. i was particularly thrilled to hear that "some people can learn to bring their hand to the mouth."
unfortunately, even the most scintillating of conversations have to end (this one, as that one!). but i've carried on the talk inside my head, a few minutes at a time, more if the fever spikes a good bit and my frustrations pop out. i keep imagining what ifs that don't help one bit but are nonetheless all too probable. how will i do x now, how will i do y?
within two days, fred was already able to think productive, forward-inclining thoughts. yesterday, he even inquired about the possibility of an external bit of hardware with which i might regain control of my left arm, once it's been rendered flail. i was dismissive, as it seems like dr. shoulderman would have brought that up right away in his extemporaneous powerpoint presentation. fred, as usual, is a great point man, and a quick googling of "flail arm" turns up many examples of braces, hooks, and goth-inspired hardware that can be strapped on, and, if nothing else, used to make me look fierce, tough, and borderline biker.
 |
| Stanmore orthosis with hook: Add a clutch and silvertone choker studded with Swarovski crystals for an easy day-to-evening look. |
i don't know whether it is the stress of it all, suddenly, or what, but my left leg is now the fugly spitting image of the right one, and both are spasming to the beat of a whacked-out drummer. i refuse to repeat the die hard description that one crps-er after another has ripped off and reiterated: "imagine being doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week, and knowing it was never going to be put out..." it's... depressing.
dr. shoulderman is wonderfully cognizant of my crps, and though we rarely discuss it, he is well-informed, as every orthopedic surgeon should be. he has been distressed by the obvious crps spread, and the condition of my arms, as surgery anywhere is never wise with crps on board, and repeated surgeries in an area of lots of rsd activity is what polite society calls a "no-no." so he decided to order repeat regional blocks in an effort to prevent further spread. it was comforting, reassuring -- he cited a recent study, and did so in depth, an impressive feat for a man whose brain must be chock full o'important stuff.
tomorrow will be a long and uncomfortable day. it's off to the hospital we go, for testing, testing, testing, and -- i predict -- some arguing with the billing office. they say i owe over $3000 from a few years back -- they didn't file with my insurance company until 18 months passed from the date-of-service, and by then, i had switched to a new insurance, and -- of course -- the former company refused to pay. if they make this admission contingent on paying that bill? i will be in a tough spot.
ah, and tomorrow they'll culture skin and nares for mrsa... i have cultured positive several times before, therefore spending my time in isolation, with a very frustrated fred having to wear those awful yellow paper gowns, and be gloved up.
maybe i can have them give me the roto-rooter port clean-up tomorrow. if we have to spend the day, may as well check off as many chores as possible.
so that's what has me away from the blog... although my heart is always at the manor, safe in marlinspike hall.
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