Reality has struck while I was asleep...
Okay, I'm $64,000 in the hole {beetween insurance charges & outpatient uncovered expenses}, I have an old brown recluse spider bite that has kickstarted an unspecified infection that no one is following particularly except to tell me what I've already taken & what hasn't worked.
I STILL have the now 21 centimeter by 25 centimeter wound which has expanded by 5 centimeters due to testing & matrix problems.
I STILL have an unhealing infection AND there is no antibiotic for the infection that so far can HEAL it. I'm going to work at the DIS Rolex race with the SAME wound, actually BIGGER from Miami by 5 centimeters AND I'm no closer to the graft than I was in late NOVEMBER when I left the Orlando area with high hopes to be HEALED in Miami.
I'm no longer close to an amputation BUT - with the ruling out of the rod in the leg as the source of the infection; WHERE AM I exactly?
Actually? I'm NO WHERE.
NO one has a handle on the infections, no one understands the machinery of infection & how the additional wound care offices contribute to my additional opportunistic infections & how we are NO CLOSER to the graft if the apligraf is going to be the way to go instead of the collegen injection graft which seems to be the baileywick of the graft doctor down here in Miami & he'd rather look at the $30,000 worth of apligraf instead of the collegen injection. Why is that?
How much would the collegen injection graft be instead? Less? Who knows? If simply asking the question is viewed as a challenge to his expertise & he is so hostile to me that his only answers to me consist of belittling my contributions to my own wound care ....
A simple one on one appointment isn't possible with him outside of the infectious & contentious wound care office, just a "first come first served" ONE day a week wound care dust up to see him.
Interactions like that do NOT motivate me to have to drive down 268 miles each way only on certain Fridays to have him say yeah or nay every week on whether I'm getting the apligraf or the wound matrix plus compressive wrapping that has to be changed, sometimes on a two times a day basis & he demands that I ONLY go to wound care professionals for each change...
I'm not really motivated to have to drive down here up to 8 weeks for more applications of a graft material that I'm not even sure is the BEST FIT with a hostile graft expert who won't allow questions.
Here are those questions:
1. How do you propose to use a product who's pre-graft requirements include an operation that is in direct opposition to how you can deal with the pyoderma that is under it?
2. What good is a graft that grows the very wound that it is supposed to cover & heal?
3. What good is a graft medium that not only hurts with the pre-graft wound matrix that goes one with saline on an open LIVE wound over what might be an infection that you REQUIRE is healed up prior to the graft but that we are ultimately SEALING IN on the inside of the matrix...which can only be floated OFF with MORE saline on the open wound's edges; which also threaten to grow by blistering each time the saline is applied on the edges.
4. What good is a weekly application treatment that has the possibility of making the wound worse by simply opening it in a germ filled outpatient wound care setting on a weekly basis that could open me to catching another opportunistic infection in the MIDDLE of getting the graft?
5. What good is having to drive over 568 miles on the morning of the first night of my work week for my job? Except for the collegen injection graft, the apligraf can be applied in a closer setting but NOT in places that understand or can work with people who have pyoderma gangrinosum.
6. Why should I have to scream for more than an hour for each application of a wound matrix BEFORE we even get to the graft? Why can't we deaden the wound before applying something that causes so much pain & stress?
Granted, the premier doctor for the pyoderma is willing to see me on an outpatient basis; down HERE in Miami; where ever I go for the graft; so I'm not TIED to having the graft HERE in Miami; but again, I will not be underwritten for the other than medical expenses.
I am no further along in my quest to be inpatient in order to clean up the infection once & for all. Every doctor down here wants to pass the buck to someone else to handle the infection. No ONE doctor has attempted to treat on his/her own or tried to find me a doctor who can go beyond the simple cellulitis diagnosis.
The pyoderma doctor is the one, may I remind you, that came up with the incorrect "worst case scenario" that lost me a doctor who would have put me in for at least 3 days of antibiotic IV & a surgery to get rid of the rod & screws that I am now told cannot REALLY be ruled as the cause of the underlying infection. Of course, that means that it still might be the underlying cause, but I still have to find someone to test me for the titanium allergy.
The central Florida immunology doctor that insists that I have to take all 90 metal allergy tests at the same time; is being called incorrect by the D.O. here in Miami; who pronounced the rod as being titanium & not stainless steel by just looking at the X-Rays. The D.O. is saying that I should be able to just get the 6 metals that are needed & that the real issue is that my insurance may not cover allergy testing.
I'll have to check on that again. I don't think that that is the answer here at all. But its another fight for another day.
So what am I still doing in Miami? I have a few more hyperbaric chamber treatments to go & would still like to do the white blood cell testing to be SURE about the bone infection.
I wonder if ORMC's trauma team used what was available at the time of my operation & that just happened to be a stainless rod instead of a titanium one. I believe that I remember having that conversation WITH the ortho surgeon AT the ORMC hospital during my month's stay there but ... but how do I differ with someone with experience like the D.O. who made a pronouncement like that after looking at his in depth detailed X-Rays.
So HERE I am, BACK at Square ONE.
Big wound, no closure after almost 3 months & no future of graft until we can get the infection under control.
No one, NO ONE on my case to try to test out what can be used to clear the infection except for the SAME three liver damaging drugs that I am already sensitive to.
HELP!
AGAIN!
again
I
am
so
tired
of
hurting!
Wednesday, January 23, 2008
Sunday, January 20, 2008
$601 for the hotel or No insurance covers Outpatient services
How much? For one WEEK of the same hotel room that cost me $89 a day plus 15% hotel taxes which only equalled $433 in November? I'm over 25 miles away from Miami Beach, & right around the corner from the airport in a hotel which is one of the few that seem to be safe for someone with an open wound to stay in.
Okay, so I've been referred down to The Cedars Medical Center to be followed by one of the two premier doctors doing work with Pyoderma Gangrinosum. One of his partners is one of the few graft specialists that works with both artificial skin called Actigraf & the collegen injection graft. One of these two grafts is probably what I'm going to need to finally close the ulcer that has the damage from my over 2 years old brown recluse spider bite. After months of wondering why we couldn't heal the infection or what was causing the infection; there is a clue; I have probably sensitized to the stainless steel rod/nail, if not the screws that held together my broken tibia until it healed from a 2003 auto accident.
I have a timeframe. I'm a 15 year veteran of working for the Daytona International Speedway for Speedweeks. I'm a front line supervisor & need to BE there in some kind of condition to work. I've been saying this for over a quarter of a year to these self same people. And my timeframe has simply been laughed at, been blown off. No patient's time frame is important to medical personnel, its like only their personal time frames are important. The threatened loss of my leg, you would think would "keep me in line" but I have to be able to make money to PAY for these treatments, I don't know why medical people simply blow off our priorities.
But what's REALLY scary, is not that we're beginning to tick down to the beginning of speedweeks & I STILL haven't had the operation to remove the rod & screws; but that the black out dates or high season of Miami has completely eaten my rainy day fund that I had painstakingly rebuilt after my last bout of hospitalization & taking off from work.
No insurance covers outpatient costs that come with the treatment. Just finding the codes to GET the treatment have been stress raisers...But not even AFLAC covers outpatient living expenses. Its over 268 miles each way from my home to the hospital with the specialists. I can't do that every day. I have to be in the hyperbaric chamber by 0730 at the latest & they would rather I was there by 0700. Gas is running $2.97 a gallon near Miami at the Racetrak gas stations if I'm lucky to $2.75 if I'm REALLY lucky at home near Orlando. I demanded & maintain a 4 cylindar car for my last new car & the gas mileage is like 27 city & 33 highway. I take care not to make any frivolous trips but even so, it is a tank to a tank & a half a week for the traveling there & back & also from the hospital to the hotel & back, plus getting groceries & even the act of going to the Racetrak gas station.
I try to maintain a budget of $50 a week for groceries to use at the hotel, including fresh, frozen & dry stores. I use a lot of stuff from my home & cart it back & forth if necessary. I eat a lot of Asian canned & preserved foods which drops my budget a little more but still it runs from $60 to $150 just for gas & food.
The hotel is another huge bite, taking between the aforementioned $433 to over $600 per WEEK chunk out of my dwindling budget. That's not anything special, its a one room with a kitchenette attached so that I don't have to add constantly going out to eat to my outlay. Its a SAFE hotel, with FREE parking which I used to take for granted. FREE parking however, isn't the norm for Miami. So this was another search topic that took me over a month to figure out & then finally act on. I had to be close enough to make it into the hospital within a certain time frame without being too close & with the sorts of danger that inner city life can lead you to. Also the reviews had to show that the place was clean & that the amenities were also clean & useable.
I need help. No one again helps to pay for these things. My Discover Card is down for the count what with the November through 1st week in January having eaten the entire balance. Even paying it down a couple of hundred with a Christmas gift; I still can't use it for hotel payments any more, not with the high season eating me alive. No matter how careful I am; it is over $600 to $800 a WEEK to maintain my outpatient status & keep my treatment contiguous with ONE set of caretakers who don't mind communicating with eachother on REALTIME.
I'm going to have to do something about this...maybe asking for help online. I just want to be able to get back on track & get working. Any ideas? I'm ready for suggestions.
Okay, so I've been referred down to The Cedars Medical Center to be followed by one of the two premier doctors doing work with Pyoderma Gangrinosum. One of his partners is one of the few graft specialists that works with both artificial skin called Actigraf & the collegen injection graft. One of these two grafts is probably what I'm going to need to finally close the ulcer that has the damage from my over 2 years old brown recluse spider bite. After months of wondering why we couldn't heal the infection or what was causing the infection; there is a clue; I have probably sensitized to the stainless steel rod/nail, if not the screws that held together my broken tibia until it healed from a 2003 auto accident.
I have a timeframe. I'm a 15 year veteran of working for the Daytona International Speedway for Speedweeks. I'm a front line supervisor & need to BE there in some kind of condition to work. I've been saying this for over a quarter of a year to these self same people. And my timeframe has simply been laughed at, been blown off. No patient's time frame is important to medical personnel, its like only their personal time frames are important. The threatened loss of my leg, you would think would "keep me in line" but I have to be able to make money to PAY for these treatments, I don't know why medical people simply blow off our priorities.
But what's REALLY scary, is not that we're beginning to tick down to the beginning of speedweeks & I STILL haven't had the operation to remove the rod & screws; but that the black out dates or high season of Miami has completely eaten my rainy day fund that I had painstakingly rebuilt after my last bout of hospitalization & taking off from work.
No insurance covers outpatient costs that come with the treatment. Just finding the codes to GET the treatment have been stress raisers...But not even AFLAC covers outpatient living expenses. Its over 268 miles each way from my home to the hospital with the specialists. I can't do that every day. I have to be in the hyperbaric chamber by 0730 at the latest & they would rather I was there by 0700. Gas is running $2.97 a gallon near Miami at the Racetrak gas stations if I'm lucky to $2.75 if I'm REALLY lucky at home near Orlando. I demanded & maintain a 4 cylindar car for my last new car & the gas mileage is like 27 city & 33 highway. I take care not to make any frivolous trips but even so, it is a tank to a tank & a half a week for the traveling there & back & also from the hospital to the hotel & back, plus getting groceries & even the act of going to the Racetrak gas station.
I try to maintain a budget of $50 a week for groceries to use at the hotel, including fresh, frozen & dry stores. I use a lot of stuff from my home & cart it back & forth if necessary. I eat a lot of Asian canned & preserved foods which drops my budget a little more but still it runs from $60 to $150 just for gas & food.
The hotel is another huge bite, taking between the aforementioned $433 to over $600 per WEEK chunk out of my dwindling budget. That's not anything special, its a one room with a kitchenette attached so that I don't have to add constantly going out to eat to my outlay. Its a SAFE hotel, with FREE parking which I used to take for granted. FREE parking however, isn't the norm for Miami. So this was another search topic that took me over a month to figure out & then finally act on. I had to be close enough to make it into the hospital within a certain time frame without being too close & with the sorts of danger that inner city life can lead you to. Also the reviews had to show that the place was clean & that the amenities were also clean & useable.
I need help. No one again helps to pay for these things. My Discover Card is down for the count what with the November through 1st week in January having eaten the entire balance. Even paying it down a couple of hundred with a Christmas gift; I still can't use it for hotel payments any more, not with the high season eating me alive. No matter how careful I am; it is over $600 to $800 a WEEK to maintain my outpatient status & keep my treatment contiguous with ONE set of caretakers who don't mind communicating with eachother on REALTIME.
I'm going to have to do something about this...maybe asking for help online. I just want to be able to get back on track & get working. Any ideas? I'm ready for suggestions.
Friday, January 18, 2008
Weight Loss and Making sense- the link between what you see & what you hear
By the middle of November 2007 I had been seen by over 10 doctors in Central and Northern Florida, had lost over 2 months of work in 2007 alone and had lost over 3 pints of blood - incidents at my house, at work, in the car... very scary.
I also lost over 60lbs of weight between November 2006 & December 2007. I know that many doctors looked & saw a large woman & saw fat instead of intelligence in their way of thinking. That didn't help me at all.
And the ulcer got worse. Every time someone needed to do a test or a biopsy to "see what was going on."
While I don't mind diagnostics, I DO mind that my wonderful female women's care primary doctor at the VA made sure that I had up to date culture reports for every doctor but those doctors STILL had to do their own labs and create even more wound boundary jumping not to mention billing nightmares. It has taken me over 4 years to be able to pay off up to 2006. I have no idea when I will be able to BEGIN to pay off 2007's 20%'s or what is going to happen in the rest of 2008. I have a house, I have a small farm. I have AFLAC but even they don't cover the outpatient services that I've been getting for the past 3 months or the hotel that I've had to stay in while getting those services. Why not do this in Central Florida where I live? Because everywhere I went; the money was more important than the patient. Time and time again; looking at the charges for the treatment that I needed; I could not afford to touch these hospitals in the Central Florida region. That isn't to say that this Miami hospital is much less but it is enough of a difference that I felt comfortable with the idea that I could spend TWO MONTHS trying to heal this wound enough so that the Graft doctor, the premier doctor for Collegen Injection grafts; could graft my leg. But, not he's stated, until the infection was under control. Which brings us back to square one. At this time in January 2008; we're up to almost $200,000 in combined insurance money and my 20%'s plus my personal investment to stay in the area for treatments without reduction of the wound - after having numerous crush tests to check for oxygen and blood flow to the wound & then wound matrix and saline poured into the LIVE WITH NERVES wound to "help shrink" the ulcer prior to the graft, the wound has actually GROWN 3 more centimeters in diameter. {think of the wound matrix as a reverse petrie dish just waiting for every opportunistic germ in the air in a hospital setting and you see why I'm not thrilled with getting it even apart from the appalling pain of the saline in the open wound.} NO ONE wanted to be the doctor to try to figure out WHY I had the infection and WHAT was infecting it. Everyone down here wants me to have my PRIMARY Care doctor do it. My primary care doctor isn't an expert in wounds, in spider bite ulcers and her hands are tied WITH ME IN MIAMI. As my VA doctor; she cannot refer outside to doctors; only with the VA & the VA adamantly REFUSES to believe that brown recluse spiders are here in Central Florida. They can only see the Cellulitis and the three CURRENT DRUGS that are used to combat it. All of which are toxic to both the liver and the kidneys and all three of which I am allergic to. They are also overwhelmed with the influx of newly injured Veterans and trying to get appointments as well as timely help has all but dissappeared from the scope of Veterans all over American, not just Central Florida. All in all the rallying cry through out is....You have to do this, you could lose your leg! NO! REALLY? Like it was a revelation to me or something. But there has been NO original thought. Once a doctor saw me for my alloted 15 minutes, my chart would be returned to the file wall and I SWEAR that no one thought of my case again until I was due in for another visit. EVERY DOCTOR so far has come up with the SAME diagnosis, NEVER looked at any other underlying causative effect that might have increased the infection rate & ONLY focussed on the obvious older attacks of cellulitis; and either bandaging the wound or trying to heal the secondary infection instead of addressing the underlying infection. Even when I would find references online to possible other causatives and would bring them to these doctors; I was dismissed for my assumptions that I could think of better things than "his expert opinions as a doctor". I cannot tell you how many times even here in Miami that a doctor has basically dismissed my ideas and suggestions out of hand; simply because they didn't come from a licensed doctor. Unfortunately I can also tell you that it has come from both male & female doctors on occasions as well. It took a paramedic responding to an incident at work where I bled all over the floor before noticing that the wound was bleeding; to say that in their experience in Central Florida running the ambulance corps; my kind of spider bite wound was RARELY cured; that my best bet was to seek out a graft specialist, try to reduce the infection and get a graft. NO DOCTOR ever admitted to not being able to heal the infection. EACH ASSUMED that it was "just" a case of cellulitis & a stupid patient. This stupid patient has an undergraduate degree in Anthropology, Archaeology, with a minor in computers and law; work on a master's in education and who is currently is working on her naturopathic doctoral thesis in herbal supplementation towards a healthy lifestyle. This stupid patient is a registered Advanced First Aider, BLS CPR for infants, adults and seniors and has other certifications to teach adults in both private & military settings. The only healing times that I logged with my leg and my primary care physician can attest to this; with her culture work; was when I would have to go for long periods waiting for a new patient appointment with yet another referral doctor;and I was allowed to work with herbal and over the counter medications. THEN the wound would stabilize and although it wouldn't shrink, it NEVER grew, in my care. Every time I have begun working with another doctor or hospital the FIRST THING that they want me to do is to STOP using what is working and use only their suggestions. When I do that; within weeks I end up getting yet another dose of Cellulitis in the leg; again between the screw holes top and bottom; and they STILL treat me as if it is MY FAULT; that I have caught the infection from what has to be THEIR treatment area. Look at the facts. The wound is never open unless it is being cleaned, matrix is being added or they need to look at it to see if it is "progressing". One dermatologist told me that I wasn't infected enough for him to take the referral from the previous wound care doctor. Then he did a swab culture on my leg even though I had come over WITH a culture report for him. Less than TWO DAYS LATER; I had a VIRULENT ATTACK of Cellulitis that ultimately lost me the nail on my big toe. All calls to the doctors went unanswered; NEITHER doctor had a covering doctor available to take my calls & the response by both of the the nursing staffs was: "Go to your nearest hospital & the doctors will contact you there on Monday!" Not to mention that I had just come off of that restrictive 13 week bedrest by the referring doctor's orders plus the hospitalization for the MRSA which never surfaced while I was in the hospital and COULD NO LONGER afford to miss work...I self treated and went to the VA for covering antibiotics instead. By the time that I finally got to the referring doctor; who said that his staff had never given him any messages from me in over two weeks; his response to my report of the referral doctor visit, the initial comments, the swab culture & the subsequent infection; was to send me a letter divesting himself of my treatment, ostensibly I suppose to keep me from suing him for sending me to the dermatologist in the first place. thank you Central Florida
I also lost over 60lbs of weight between November 2006 & December 2007. I know that many doctors looked & saw a large woman & saw fat instead of intelligence in their way of thinking. That didn't help me at all.
And the ulcer got worse. Every time someone needed to do a test or a biopsy to "see what was going on."
While I don't mind diagnostics, I DO mind that my wonderful female women's care primary doctor at the VA made sure that I had up to date culture reports for every doctor but those doctors STILL had to do their own labs and create even more wound boundary jumping not to mention billing nightmares. It has taken me over 4 years to be able to pay off up to 2006. I have no idea when I will be able to BEGIN to pay off 2007's 20%'s or what is going to happen in the rest of 2008. I have a house, I have a small farm. I have AFLAC but even they don't cover the outpatient services that I've been getting for the past 3 months or the hotel that I've had to stay in while getting those services. Why not do this in Central Florida where I live? Because everywhere I went; the money was more important than the patient. Time and time again; looking at the charges for the treatment that I needed; I could not afford to touch these hospitals in the Central Florida region. That isn't to say that this Miami hospital is much less but it is enough of a difference that I felt comfortable with the idea that I could spend TWO MONTHS trying to heal this wound enough so that the Graft doctor, the premier doctor for Collegen Injection grafts; could graft my leg. But, not he's stated, until the infection was under control. Which brings us back to square one. At this time in January 2008; we're up to almost $200,000 in combined insurance money and my 20%'s plus my personal investment to stay in the area for treatments without reduction of the wound - after having numerous crush tests to check for oxygen and blood flow to the wound & then wound matrix and saline poured into the LIVE WITH NERVES wound to "help shrink" the ulcer prior to the graft, the wound has actually GROWN 3 more centimeters in diameter. {think of the wound matrix as a reverse petrie dish just waiting for every opportunistic germ in the air in a hospital setting and you see why I'm not thrilled with getting it even apart from the appalling pain of the saline in the open wound.} NO ONE wanted to be the doctor to try to figure out WHY I had the infection and WHAT was infecting it. Everyone down here wants me to have my PRIMARY Care doctor do it. My primary care doctor isn't an expert in wounds, in spider bite ulcers and her hands are tied WITH ME IN MIAMI. As my VA doctor; she cannot refer outside to doctors; only with the VA & the VA adamantly REFUSES to believe that brown recluse spiders are here in Central Florida. They can only see the Cellulitis and the three CURRENT DRUGS that are used to combat it. All of which are toxic to both the liver and the kidneys and all three of which I am allergic to. They are also overwhelmed with the influx of newly injured Veterans and trying to get appointments as well as timely help has all but dissappeared from the scope of Veterans all over American, not just Central Florida. All in all the rallying cry through out is....You have to do this, you could lose your leg! NO! REALLY? Like it was a revelation to me or something. But there has been NO original thought. Once a doctor saw me for my alloted 15 minutes, my chart would be returned to the file wall and I SWEAR that no one thought of my case again until I was due in for another visit. EVERY DOCTOR so far has come up with the SAME diagnosis, NEVER looked at any other underlying causative effect that might have increased the infection rate & ONLY focussed on the obvious older attacks of cellulitis; and either bandaging the wound or trying to heal the secondary infection instead of addressing the underlying infection. Even when I would find references online to possible other causatives and would bring them to these doctors; I was dismissed for my assumptions that I could think of better things than "his expert opinions as a doctor". I cannot tell you how many times even here in Miami that a doctor has basically dismissed my ideas and suggestions out of hand; simply because they didn't come from a licensed doctor. Unfortunately I can also tell you that it has come from both male & female doctors on occasions as well. It took a paramedic responding to an incident at work where I bled all over the floor before noticing that the wound was bleeding; to say that in their experience in Central Florida running the ambulance corps; my kind of spider bite wound was RARELY cured; that my best bet was to seek out a graft specialist, try to reduce the infection and get a graft. NO DOCTOR ever admitted to not being able to heal the infection. EACH ASSUMED that it was "just" a case of cellulitis & a stupid patient. This stupid patient has an undergraduate degree in Anthropology, Archaeology, with a minor in computers and law; work on a master's in education and who is currently is working on her naturopathic doctoral thesis in herbal supplementation towards a healthy lifestyle. This stupid patient is a registered Advanced First Aider, BLS CPR for infants, adults and seniors and has other certifications to teach adults in both private & military settings. The only healing times that I logged with my leg and my primary care physician can attest to this; with her culture work; was when I would have to go for long periods waiting for a new patient appointment with yet another referral doctor;and I was allowed to work with herbal and over the counter medications. THEN the wound would stabilize and although it wouldn't shrink, it NEVER grew, in my care. Every time I have begun working with another doctor or hospital the FIRST THING that they want me to do is to STOP using what is working and use only their suggestions. When I do that; within weeks I end up getting yet another dose of Cellulitis in the leg; again between the screw holes top and bottom; and they STILL treat me as if it is MY FAULT; that I have caught the infection from what has to be THEIR treatment area. Look at the facts. The wound is never open unless it is being cleaned, matrix is being added or they need to look at it to see if it is "progressing". One dermatologist told me that I wasn't infected enough for him to take the referral from the previous wound care doctor. Then he did a swab culture on my leg even though I had come over WITH a culture report for him. Less than TWO DAYS LATER; I had a VIRULENT ATTACK of Cellulitis that ultimately lost me the nail on my big toe. All calls to the doctors went unanswered; NEITHER doctor had a covering doctor available to take my calls & the response by both of the the nursing staffs was: "Go to your nearest hospital & the doctors will contact you there on Monday!" Not to mention that I had just come off of that restrictive 13 week bedrest by the referring doctor's orders plus the hospitalization for the MRSA which never surfaced while I was in the hospital and COULD NO LONGER afford to miss work...I self treated and went to the VA for covering antibiotics instead. By the time that I finally got to the referring doctor; who said that his staff had never given him any messages from me in over two weeks; his response to my report of the referral doctor visit, the initial comments, the swab culture & the subsequent infection; was to send me a letter divesting himself of my treatment, ostensibly I suppose to keep me from suing him for sending me to the dermatologist in the first place. thank you Central Florida
Pyoderma Gangrinosum, MRSA & other nice things to spell
My ulcer {No, I am NOT a diabetic} has grown from a scratch in the infected area which was ONLY between the top and bottom screw scars. The scratch came from tripping over a filled hand basket at a Wal-Mart during the Christmas rush in 2005. Wal-Mart took a chance on me and gave me a job as a temporary cashier for the 2005 Christmas season. {I've done so well and gotten so many raises in the past two years that I've had to cut back my hours in order to comply with my disability regulations AND because the pain from the leg wouldn't allow me to stand for significant periods of time. When was the last time you saw an associate SITTING in a Wal-Mart?}
A customer got disgruntled with the line & decided that the BEST place to leave her overfilled hand basket would be DIRECTLY behind where I stood at a cash register ringing up other people in line. As a result, when I turned to go & have a check approved at the Central Podium as per policy at that time; I completely tripped over the basket, scratching & bruising my leg and fell down.
The growth of the wound came from Florida doctors who couldn't resist trying to debride or clean the wound; completely disregarding the pyoderma gangrinosum diganosis for their own "expert" opinions. Some of those expert opinions had me ending up in a very expensive trauma and wound care hospital with a suspected case of MRSA in 2006 which never materialized { I have a higher normal level of staph as in my body, more on that in another post} and then cost me over 13 weeks of work doing mandated bedrest; without any change to the wound at all - good or bad. All in all, each "EXPERT"{ read licensed} doctor who told me he was a specialist at these types of wounds; to which I had been referred, did the SAME TESTS, got the SAME results and tried to use the SAME FIVE antibiotics to which I was allergic; {Ciproflaxin, Levoflaxin, Pennicillin D, Vanocmyacin, and Zyvox-which also costs between $60-$100 per caplet!} and when those and other products that had ingredients to which I was senstive & had been demanded to use anyway; failed to produce ANY healing effect; Or in FACT made the wound WORSE: they would throw up their hands, tell me that it was ONLY the practice of medicine and that they couldn't be right all of the time, and then they would refer me. AFTER of course, charging my insurances from $3,000 to $19,000 EACH in some cases. Not all the drugs could be gotten through the pharmacopea at the VA and insurance didn't cover all of the outside prescriptions either.
Several doctors in Central Florida charged me for wound care when I was the one doing the bandage changing. They also sold me through their medical supplies company without letting me know that medicare doesn't cover bandaging medical supplies; so the out of pocket expenses became completely my own; I'm STILL paying for 2006's medical supplies on a monthly basis direct to the supplies company. Medicare and I are now going through all of the old bills to see if there are double charges for other services that weren't preformed by each office.
Something Strange that I saw:
The Mayo Clinic doctors always came in in a group like they were connected at the waist like those plastic beads you get as a child or like that Monty Python skit with the group of Arabs who come, pick up an inanimate object and carry it away yelling yaaddayaaddayaddda as they enter and leave the scene. It was rare that the female doctor who was my referral doctor was able to either suggest or treat me by herself without coming in with a whole gaggle of male doctors practically attached to her. The only thing that they could say over and over again was that I HAD TO GO TO THE MAYO CLINIC IN MINNESOTA or to the Cedars Medical Center in Miami to be seen as they didn't know how to treat me in Jacksonville and didn't have the facilities to do so. That didn't make sense, they have St. Luke's hospital right there in northern Jacksonville; but no, they refused to do any treatment to me other than the first disasterous soap & biopsy that enlarged my wound, practically doubling its size in less than 3 months. It was like listening to a cloned voice, as if they had been programmed to say that in response to certain medical stimulus like a problem that they hadn't addressed before.
In the three months of appointments and the month that I had to wait as a new patient FOR an appointment; the doctors at The Mayo Clinic wouldn't / didn't do any tests, wouldn't do any treatment past offering a soap that I was allergic to AND doing a double biopsy even though I had test results with me, biopsies that ended up jumping the wound boundaries over 6 centimeters in diameter before it was all over. It was like the Stepford Doctors. Really WEIRD. And every doctor that saw me? The appointments ran to the $1,500 mark with a la carte stuff for things like bandaging {which I did, they wouldn't even come back into the room after making their group pronouncements each month}...
A customer got disgruntled with the line & decided that the BEST place to leave her overfilled hand basket would be DIRECTLY behind where I stood at a cash register ringing up other people in line. As a result, when I turned to go & have a check approved at the Central Podium as per policy at that time; I completely tripped over the basket, scratching & bruising my leg and fell down.
The growth of the wound came from Florida doctors who couldn't resist trying to debride or clean the wound; completely disregarding the pyoderma gangrinosum diganosis for their own "expert" opinions. Some of those expert opinions had me ending up in a very expensive trauma and wound care hospital with a suspected case of MRSA in 2006 which never materialized { I have a higher normal level of staph as in my body, more on that in another post} and then cost me over 13 weeks of work doing mandated bedrest; without any change to the wound at all - good or bad. All in all, each "EXPERT"{ read licensed} doctor who told me he was a specialist at these types of wounds; to which I had been referred, did the SAME TESTS, got the SAME results and tried to use the SAME FIVE antibiotics to which I was allergic; {Ciproflaxin, Levoflaxin, Pennicillin D, Vanocmyacin, and Zyvox-which also costs between $60-$100 per caplet!} and when those and other products that had ingredients to which I was senstive & had been demanded to use anyway; failed to produce ANY healing effect; Or in FACT made the wound WORSE: they would throw up their hands, tell me that it was ONLY the practice of medicine and that they couldn't be right all of the time, and then they would refer me. AFTER of course, charging my insurances from $3,000 to $19,000 EACH in some cases. Not all the drugs could be gotten through the pharmacopea at the VA and insurance didn't cover all of the outside prescriptions either.
Several doctors in Central Florida charged me for wound care when I was the one doing the bandage changing. They also sold me through their medical supplies company without letting me know that medicare doesn't cover bandaging medical supplies; so the out of pocket expenses became completely my own; I'm STILL paying for 2006's medical supplies on a monthly basis direct to the supplies company. Medicare and I are now going through all of the old bills to see if there are double charges for other services that weren't preformed by each office.
Something Strange that I saw:
The Mayo Clinic doctors always came in in a group like they were connected at the waist like those plastic beads you get as a child or like that Monty Python skit with the group of Arabs who come, pick up an inanimate object and carry it away yelling yaaddayaaddayaddda as they enter and leave the scene. It was rare that the female doctor who was my referral doctor was able to either suggest or treat me by herself without coming in with a whole gaggle of male doctors practically attached to her. The only thing that they could say over and over again was that I HAD TO GO TO THE MAYO CLINIC IN MINNESOTA or to the Cedars Medical Center in Miami to be seen as they didn't know how to treat me in Jacksonville and didn't have the facilities to do so. That didn't make sense, they have St. Luke's hospital right there in northern Jacksonville; but no, they refused to do any treatment to me other than the first disasterous soap & biopsy that enlarged my wound, practically doubling its size in less than 3 months. It was like listening to a cloned voice, as if they had been programmed to say that in response to certain medical stimulus like a problem that they hadn't addressed before.
In the three months of appointments and the month that I had to wait as a new patient FOR an appointment; the doctors at The Mayo Clinic wouldn't / didn't do any tests, wouldn't do any treatment past offering a soap that I was allergic to AND doing a double biopsy even though I had test results with me, biopsies that ended up jumping the wound boundaries over 6 centimeters in diameter before it was all over. It was like the Stepford Doctors. Really WEIRD. And every doctor that saw me? The appointments ran to the $1,500 mark with a la carte stuff for things like bandaging {which I did, they wouldn't even come back into the room after making their group pronouncements each month}...
Having a Screw Loose or "That aint no spider bite, Lady!
It has taken over 2.8 years to come up with a possible solution for fixing my leg and, in the end, because it has taken SO LONG to get a doctor to even agree to the hypothesis and one to agree to operate and remove the fixative metal in my leg, that I may end up LOSING my lower leg to amputation {an ugly UGLY word}.
The worst case assumption is that the infection could get into the marrow; either by the suction as they remove the metal through the entrance hole below the knee or that the infection has already reached the marrow; because the screw holes have allowed the movement of infected materials INTO the marrow/rod region.
I had a screw back out on me in early 2005 almost two years after the car versus pedestrian accident that almost cost me my life. It was surgically removed in February of 2005; just two months before I received the brown recluse spider bite while exercising in my back porch. The screw was made of Titanium.
I didn't seem to be allergic to the screw, it just turned itself around some 6 turns of 8 and backed itself almost completely out of the nail /rod head and my tibia. It protruded just under the skin like some mini volcano almost an inch and a half; stretching my skin to almost the ripping point, but just.
While "Having a Screw Loose" was cause for some hilarity within the medical community, my family and friends wondered what that meant for the rest of the hardware in the leg. The bones had knitted quite well and I was told that the callus and bone material had strengthened quite a bit in two years. I was also told that the rod wouldn't move very much with only one screw left in the top of the pole and that it shouldn't bother me too much; but that if it DID, we could certainly arrange to take it out after another year or so.
I have asked many doctors over the course of the past almost 3 years, if the vacated screw hole could be leaching metal infected lymph material into the surrounding flesh when the leg swells; either from cellulitis infections or when I've been on my feet too much.
Most of them have just laughed and blown off the question. Why is that so far fetched? For instance: Look at what happens when you pierce your ears. A canal of scar tissue is created around the open or not quite open hole and it can REMAIN there for the rest of your life, with or without the continued use of posted earrings. I still have my canals even though I haven't worn pierced earrings in years. All I have to do to reopen the canal is to put a posted earring in my ear, give it a little push to remove the plug of sebum that tends to collect there and voila! I can wear posted earrings again.
Look at how these screws & nails are put into our broken bones. The surgeons use a bone marrow drill to drill out the marrow to make room to drive the nail or post and thread the broken bits of bone onto them, then they straighten the leg/ arrange the foot so that it lines up and then they either cast the leg or somehow immobilize it until the bones have a chance to knit and the skin around the incisions if not around the complex {bone through skin} wounds have also healed. We are told that the bone normally fills in after a screw is taken out or the surgeon can opt to pour cement into the hole to stablize it. Why wouldn't it follow the same example as a pierced ear and leave a channel open to the marrow and the rest of the metal which could port lymph material out to the outter layers of the skin surrounding the scars and open wounds?
The worst case assumption is that the infection could get into the marrow; either by the suction as they remove the metal through the entrance hole below the knee or that the infection has already reached the marrow; because the screw holes have allowed the movement of infected materials INTO the marrow/rod region.
I had a screw back out on me in early 2005 almost two years after the car versus pedestrian accident that almost cost me my life. It was surgically removed in February of 2005; just two months before I received the brown recluse spider bite while exercising in my back porch. The screw was made of Titanium.
I didn't seem to be allergic to the screw, it just turned itself around some 6 turns of 8 and backed itself almost completely out of the nail /rod head and my tibia. It protruded just under the skin like some mini volcano almost an inch and a half; stretching my skin to almost the ripping point, but just.
While "Having a Screw Loose" was cause for some hilarity within the medical community, my family and friends wondered what that meant for the rest of the hardware in the leg. The bones had knitted quite well and I was told that the callus and bone material had strengthened quite a bit in two years. I was also told that the rod wouldn't move very much with only one screw left in the top of the pole and that it shouldn't bother me too much; but that if it DID, we could certainly arrange to take it out after another year or so.
I have asked many doctors over the course of the past almost 3 years, if the vacated screw hole could be leaching metal infected lymph material into the surrounding flesh when the leg swells; either from cellulitis infections or when I've been on my feet too much.
Most of them have just laughed and blown off the question. Why is that so far fetched? For instance: Look at what happens when you pierce your ears. A canal of scar tissue is created around the open or not quite open hole and it can REMAIN there for the rest of your life, with or without the continued use of posted earrings. I still have my canals even though I haven't worn pierced earrings in years. All I have to do to reopen the canal is to put a posted earring in my ear, give it a little push to remove the plug of sebum that tends to collect there and voila! I can wear posted earrings again.
Look at how these screws & nails are put into our broken bones. The surgeons use a bone marrow drill to drill out the marrow to make room to drive the nail or post and thread the broken bits of bone onto them, then they straighten the leg/ arrange the foot so that it lines up and then they either cast the leg or somehow immobilize it until the bones have a chance to knit and the skin around the incisions if not around the complex {bone through skin} wounds have also healed. We are told that the bone normally fills in after a screw is taken out or the surgeon can opt to pour cement into the hole to stablize it. Why wouldn't it follow the same example as a pierced ear and leave a channel open to the marrow and the rest of the metal which could port lymph material out to the outter layers of the skin surrounding the scars and open wounds?
Have I somehow touched on a taboo subject for surgeons & the office staff that work for them? Is this a real issue that's being swept under the carpet along with other little mentioned no no's?
Thursday, January 17, 2008
Why wounds aren't healed and more on the spider bite/ rod infection
Since 1992 most of my dealings with medicine in Florida could not be called a positive experience.
In fact, it has been so horrible at times that I developed a running email to my friends; complete with pictures, since just before Holloween 2000 to save my sanity. Many people have asked me why I haven't written a book. I wanted everything to HEAL first. However, yesterday, 6 days prior to surgery to remove a rod/screws from my leg, a surgeon pulled out; citing that he wanted to retire this year and didn't want any more longterm cases. I'm not waiting any longer. Perhaps you will be able to stave off some of the money hungry, idiotic, biased and careless behavior that I have found- the hard way.
Wound care is a multi- billion dollar a year business. Really, why would someone cure a wound when the intermidable returns for rebandaging can be charged over and over and over again? I know I'm going to hear from a lot of people who think that that is bunk, but let me tell you; I've met hundreds of people in Florida who know of someone who's been bitten by a brown recluse, who have been bitten by a brown recluse and who have been told by their pompous doctor experts that they COULDN'T have been bitten by a brown recluse spider and who have either had terrible stories of getting the wound excised over and over again. Many people have lost limbs to the spider bites, many have lost their lives. People's pets have died from this spider's venom & the flesh eating disease that it brings with it. As of yet, no one has positively linked Brown Recluse Spider bites with the increase in cases of MS {that starts from the feet & goes upward versus starting from the back & heading downward} and Pyoderma Gangrinosum, but I feel confident that in time, they will.
YET, STILL there are doctors who believe that the brown recluse CAN'T live in Florida.
I BEG TO DIFFER.
I was in the U.S. Navy for over 23 years.
I served in several states that had a large brown recluse spider population.
In all those states, I had & maintained storage.
In fact, it has been so horrible at times that I developed a running email to my friends; complete with pictures, since just before Holloween 2000 to save my sanity. Many people have asked me why I haven't written a book. I wanted everything to HEAL first. However, yesterday, 6 days prior to surgery to remove a rod/screws from my leg, a surgeon pulled out; citing that he wanted to retire this year and didn't want any more longterm cases. I'm not waiting any longer. Perhaps you will be able to stave off some of the money hungry, idiotic, biased and careless behavior that I have found- the hard way.
Wound care is a multi- billion dollar a year business. Really, why would someone cure a wound when the intermidable returns for rebandaging can be charged over and over and over again? I know I'm going to hear from a lot of people who think that that is bunk, but let me tell you; I've met hundreds of people in Florida who know of someone who's been bitten by a brown recluse, who have been bitten by a brown recluse and who have been told by their pompous doctor experts that they COULDN'T have been bitten by a brown recluse spider and who have either had terrible stories of getting the wound excised over and over again. Many people have lost limbs to the spider bites, many have lost their lives. People's pets have died from this spider's venom & the flesh eating disease that it brings with it. As of yet, no one has positively linked Brown Recluse Spider bites with the increase in cases of MS {that starts from the feet & goes upward versus starting from the back & heading downward} and Pyoderma Gangrinosum, but I feel confident that in time, they will.
YET, STILL there are doctors who believe that the brown recluse CAN'T live in Florida.
I BEG TO DIFFER.
I was in the U.S. Navy for over 23 years.
I served in several states that had a large brown recluse spider population.
In all those states, I had & maintained storage.
None of the storage areas where I kept my furniture and clothing ever sprayed for bugs. Then I moved to Florida and maintained the SAME storage of the SAME furniture and clothing and boxes for over 6 years before finding my dream house. The spiders; which would have died in the northern climes; had time to evolve here in Florida with the very hot months elongating their April through July mating and egg laying season and they thrived on the insect life that profilerates in many storage areas. They also grew. The spider that we found dead on my back porch after I inadvertantly squished it with my ankle; was over 2 inches in diameter including legs. Its mate; caught and ate a large 2" palmetto bug on my porch before we were able to spray it dead with BugStop by Spectracidą¤$.
How many thousands of military people have moved into the state of Florida in the past 40 years bringing with them storage containers from other states where spider populations thrive? Remember that a brown recluse loves to be places where humans aren't for the most part. Storage areas are PERFECT for them. We have a brown recluse spider population in Florida.. I have seen one so big that it was able to take on and EAT one of our giant palmetto bugs; which, by the way, get to be OVER 4 inches in length.
You're Not Going to BELIEVE this...last Wednesday at my "clearance" for surgery
I couldn't believe what I was hearing. What? You're pulling out? It was this Wednesday when I was in a room waiting for a clearance doctor to clear me for my surgery the next Tuesday. Sure enough, the surgeon who I had seen with other patients with complications in the hyperbaric chambers in the hospital in Miami for over 4 weeks in December; had simply decided that he was going to retire at the end of 2008 and no longer wanted to take on "other surgeon's mistakes" which might take longer than one operation. He wasn't going to "remove my hardware just to have to return to amputate my leg if the infection got into the marrow."
I told him IN NO WAY would I allow an amputation to happen without us trying to stem any infection that might, MIGHT get into the marrow; and isn't that what having a good surgeon is supposed to be FOR? Obviously you can't guarantee the outcome of a surgery but you can't just ASSUME the worst from the beginning and not TRY.
I had waited almost 4 weeks for an appointment with him to ask for his help. His name had been used by several patients who cited his excellent work and support for their issues. All through December he had seemed amenable to doing the quick extraction of the metal in the leg, even knowing of the spider bite infection that had maybe sensitized me to the metal. We had our official first visit on Wednesday the 9th. He seemed firm and to the point. He had the nurse set up my surgery for the 22nd of January with a clearance appointment with another doctor set for the 16th.
Then he talked to my pyoderma dermatologist specialist at the hospital that Wednesday morning and, within hours had made the decision to withdraw from the case. After my disasterous appointment; I went directly down to demand some answers from the dermatologist. He says that he felt that the decision had already been reached when the surgeon had tried to reach him on Friday; but that the final straw was in place when he returned to work on Wednesday morning and they discussed the post operative care that I would receive in the dermatology ward.
The surgeon had come who had come highly admired from patients who told me of his support and excellent work, and who had been so amenable to helping me remove metal from my leg; He didn't want to "leave me hanging", in case there were complications. He was very ready to assume that there would be complications; without testing, without checking to see if the assumptions were in fact, true. However, in making his decision; he hadn't done the right thing to check to see if there were someone else who could take the case, no, in his eyes, I could just find someone else to take the case, somewhere else.
I should have known when my appointment time came and went and no other doctor appeared to come in to do the clearance. The nurse finally took me to a room and said that the doctor would be in. Once he came in; he went right to his speech. He said that he had to look at the worst case scenario and assume that it would happen. I said, "let's NOT ASSUME the worst without at least trying to TEST for the hypothesis, we HAVE TIME to schedule the nuclear test. {a nuclear white blood cell pooling test that takes 2 days & a nuclear dye marker is added to your cells and reinjected into you and then X-Rays are taken over the course of two days to watch where the cells migrate to; they go to infection areas.} that shows whether or not the infection is in the bone, it works, it can be done HERE, let's do it. I've had it done FIVE TIMES BEFORE and the infection has NOT been in the bone, yes there is a chance that you can draw it into the bone with the suction from removing the metal from the marrow at the top of the knee, but there IS irrigation and there ARE other antibiotics that I am NOT allergic to."
But no, he had made up his mind and had NO REFERRALS for me either. Just left me hanging...SIX DAYS before the surgery. I heard his progress notes as I managed to round the corner but get no further without completely coming to pieces..."she is understandably upset by my decision"... UNDERSTATEMENT.
The nurses tried to calm me down, but what could they say? He'd basically renegged on a surgery that he'd already agreed to doing. He had just dropped my entire continuity of treatment out the window.
I have spent over $3,000 of my own money; in the past two months building a relationship & medical path with ONE hospital and the associated doctors that I was referred to by The Mayo Clinic in Jacksonville Florida. They had referred me from May until July {more on that adventure in another post} to go one of two premier American Pyoderma Gangrinosum specialists who practiced in a hospital that The Mayo Clinic trusted; and which had a dedicated dermatology ward...the only one on the east coast, the others would have been in Minnesota. I started with that doctor in September of 2007. His suggestions coupled with Central Florida's insistance on the money over the patient; left me unable to start treatment by hyperbaric chamber until November 2007 when a cap came off of my primary insurance.
I have tried very hard to keep the treatment to the ONE location instead of being continally referred all over the place as had happened in Central Florida for the past two and a half years. Doctors in Central Florida all tried to tell me that my wound hadn't been caused by a brown recluse spider, even though we had the spider's body identified as such; andthey kept saying that they could "heal the cellulitis" when it wasn't the cellulitis at ALL that's benn causing the infection.
In fact, it wasn't a doctor at all who first brought up the idea that I might have sensitized to the metal in my leg. That came from an engineer friend of mine on that mailing list that I told you I'd started. He found several references online to the fact that almost 5 % of people with fixative metal in their limbs from multiple fractures tend to sensitize to their metal and that it causes the types of infections that I was seeing in the base of the leg. The other cellulitis infections were basically secondary and opportunistic; as I had at this point a 20 x 25 centimeter opening from the front of my shin to the back center of my calf, almost 1/2 centimeter in depth in places.
Once the surgeon above said that he would do the operation; other doctors that I had been seeing in the same hospital jumped on the proverbial bandwagon and said that they concurred - second opionions out of the blue. They NEVER gave me that opinion in the first 6 weeks that I was there, we could have had that rod andscrews out in DECEMBER when my insurance would have paid 100% and the darn surgeon hadn't decided to retire yet. But no.
In trying to explain his role in the surgeon's decision process; the dermatology doctor defended his position saying that "no doctor wants to fix another doctor's mistakes" and that I just needed to go "next door" to the doctor that had done the metal fixation in the first place. I quickly explained that in HIS OWN RECORDS and that of the surgeon, that the surgery was done IN ORLANDO at ORMC TRAUMA in 2003. NOT in Miami at Jackson. AGAIN AN ASSUMPTION NOT BASED IN FACT. I re-iterated as I have done since day one in EACH doctor's presence with them taking notes; that the doctors that worked on me in 2003 have all either left the original trauma center in Orlando, the original surgeon has actually left the State of Florida and many of them have retired.
The only option I had at that point was to start completely over. My timeframe for getting back to work, getting back to working at Daytona Speedway for speedweeks, for trying to pay down the enormous bills that I have amassed trying to do contiguous care in ONE location; is totally down the drain. But MY timeframe never seems to be important to medical practitioners. They just look at me pityingly as if to say, "what YOU want doesn't matter. It isn't going to happen that way. " I'm so TIRED of having to rearrange my ENTIRE LIFE; just to try to HEAL what should be and should have BEEN easily diagnosed and caught MUCH EARLIER than this, if it is indeed a sensitivity to the pole from the original spider bite infection.
I'm so TIRED of HURTING.
The dermatologist; when asked if he knew of any other surgeon that I could try; said "Oh you can go to ANYONE that will do it;" they just had to be aggressive enough to do the surgery. He said that "most surgeons like to go in for the simple knees & hips, make the big bucks and never look back; they don't want the problems and possible complications that my case represents. They shudder at the thought of having to see you again and again".
That wasn't very reassuring. I told him that I needed to do background on the doctor to make sure that I could work with him; I had to build some kind of TRUST before I was going to let anyone try to operate on me and CERTAINLY wasn't going to just give my permission to any Tom, Dick or Harry doctor who might decide to take my leg, without trying to fight it; if they found infection near the bone. No Amputation because of stupid doctor practices. Period. I've got full mobility of my foot, my toes and I'm warm to the touch all the way down. BUT the infection is ONLY between the screws top and bottom. AND historically it HASN'T been in the bone. No one wants to believe that it is that way. EVERYONE wants to ASSUME the worst and work from there.
I REFUSE TO GO INTO SURGERY EXPECTING THE WORST.
I told him that if I wanted to go around the corner to the local lawnmower guy; that I had as much chance of finding someone of the same caliber as the original surgeon in that field without any kind of referral. His reply? "Oh, I'll ask around the lunchroom to see if anyone is interested in taking on the case!"
I told him IN NO WAY would I allow an amputation to happen without us trying to stem any infection that might, MIGHT get into the marrow; and isn't that what having a good surgeon is supposed to be FOR? Obviously you can't guarantee the outcome of a surgery but you can't just ASSUME the worst from the beginning and not TRY.
I had waited almost 4 weeks for an appointment with him to ask for his help. His name had been used by several patients who cited his excellent work and support for their issues. All through December he had seemed amenable to doing the quick extraction of the metal in the leg, even knowing of the spider bite infection that had maybe sensitized me to the metal. We had our official first visit on Wednesday the 9th. He seemed firm and to the point. He had the nurse set up my surgery for the 22nd of January with a clearance appointment with another doctor set for the 16th.
Then he talked to my pyoderma dermatologist specialist at the hospital that Wednesday morning and, within hours had made the decision to withdraw from the case. After my disasterous appointment; I went directly down to demand some answers from the dermatologist. He says that he felt that the decision had already been reached when the surgeon had tried to reach him on Friday; but that the final straw was in place when he returned to work on Wednesday morning and they discussed the post operative care that I would receive in the dermatology ward.
The surgeon had come who had come highly admired from patients who told me of his support and excellent work, and who had been so amenable to helping me remove metal from my leg; He didn't want to "leave me hanging", in case there were complications. He was very ready to assume that there would be complications; without testing, without checking to see if the assumptions were in fact, true. However, in making his decision; he hadn't done the right thing to check to see if there were someone else who could take the case, no, in his eyes, I could just find someone else to take the case, somewhere else.
I should have known when my appointment time came and went and no other doctor appeared to come in to do the clearance. The nurse finally took me to a room and said that the doctor would be in. Once he came in; he went right to his speech. He said that he had to look at the worst case scenario and assume that it would happen. I said, "let's NOT ASSUME the worst without at least trying to TEST for the hypothesis, we HAVE TIME to schedule the nuclear test. {a nuclear white blood cell pooling test that takes 2 days & a nuclear dye marker is added to your cells and reinjected into you and then X-Rays are taken over the course of two days to watch where the cells migrate to; they go to infection areas.} that shows whether or not the infection is in the bone, it works, it can be done HERE, let's do it. I've had it done FIVE TIMES BEFORE and the infection has NOT been in the bone, yes there is a chance that you can draw it into the bone with the suction from removing the metal from the marrow at the top of the knee, but there IS irrigation and there ARE other antibiotics that I am NOT allergic to."
But no, he had made up his mind and had NO REFERRALS for me either. Just left me hanging...SIX DAYS before the surgery. I heard his progress notes as I managed to round the corner but get no further without completely coming to pieces..."she is understandably upset by my decision"... UNDERSTATEMENT.
The nurses tried to calm me down, but what could they say? He'd basically renegged on a surgery that he'd already agreed to doing. He had just dropped my entire continuity of treatment out the window.
I have spent over $3,000 of my own money; in the past two months building a relationship & medical path with ONE hospital and the associated doctors that I was referred to by The Mayo Clinic in Jacksonville Florida. They had referred me from May until July {more on that adventure in another post} to go one of two premier American Pyoderma Gangrinosum specialists who practiced in a hospital that The Mayo Clinic trusted; and which had a dedicated dermatology ward...the only one on the east coast, the others would have been in Minnesota. I started with that doctor in September of 2007. His suggestions coupled with Central Florida's insistance on the money over the patient; left me unable to start treatment by hyperbaric chamber until November 2007 when a cap came off of my primary insurance.
I have tried very hard to keep the treatment to the ONE location instead of being continally referred all over the place as had happened in Central Florida for the past two and a half years. Doctors in Central Florida all tried to tell me that my wound hadn't been caused by a brown recluse spider, even though we had the spider's body identified as such; andthey kept saying that they could "heal the cellulitis" when it wasn't the cellulitis at ALL that's benn causing the infection.
In fact, it wasn't a doctor at all who first brought up the idea that I might have sensitized to the metal in my leg. That came from an engineer friend of mine on that mailing list that I told you I'd started. He found several references online to the fact that almost 5 % of people with fixative metal in their limbs from multiple fractures tend to sensitize to their metal and that it causes the types of infections that I was seeing in the base of the leg. The other cellulitis infections were basically secondary and opportunistic; as I had at this point a 20 x 25 centimeter opening from the front of my shin to the back center of my calf, almost 1/2 centimeter in depth in places.
Once the surgeon above said that he would do the operation; other doctors that I had been seeing in the same hospital jumped on the proverbial bandwagon and said that they concurred - second opionions out of the blue. They NEVER gave me that opinion in the first 6 weeks that I was there, we could have had that rod andscrews out in DECEMBER when my insurance would have paid 100% and the darn surgeon hadn't decided to retire yet. But no.
In trying to explain his role in the surgeon's decision process; the dermatology doctor defended his position saying that "no doctor wants to fix another doctor's mistakes" and that I just needed to go "next door" to the doctor that had done the metal fixation in the first place. I quickly explained that in HIS OWN RECORDS and that of the surgeon, that the surgery was done IN ORLANDO at ORMC TRAUMA in 2003. NOT in Miami at Jackson. AGAIN AN ASSUMPTION NOT BASED IN FACT. I re-iterated as I have done since day one in EACH doctor's presence with them taking notes; that the doctors that worked on me in 2003 have all either left the original trauma center in Orlando, the original surgeon has actually left the State of Florida and many of them have retired.
The only option I had at that point was to start completely over. My timeframe for getting back to work, getting back to working at Daytona Speedway for speedweeks, for trying to pay down the enormous bills that I have amassed trying to do contiguous care in ONE location; is totally down the drain. But MY timeframe never seems to be important to medical practitioners. They just look at me pityingly as if to say, "what YOU want doesn't matter. It isn't going to happen that way. " I'm so TIRED of having to rearrange my ENTIRE LIFE; just to try to HEAL what should be and should have BEEN easily diagnosed and caught MUCH EARLIER than this, if it is indeed a sensitivity to the pole from the original spider bite infection.
I'm so TIRED of HURTING.
The dermatologist; when asked if he knew of any other surgeon that I could try; said "Oh you can go to ANYONE that will do it;" they just had to be aggressive enough to do the surgery. He said that "most surgeons like to go in for the simple knees & hips, make the big bucks and never look back; they don't want the problems and possible complications that my case represents. They shudder at the thought of having to see you again and again".
That wasn't very reassuring. I told him that I needed to do background on the doctor to make sure that I could work with him; I had to build some kind of TRUST before I was going to let anyone try to operate on me and CERTAINLY wasn't going to just give my permission to any Tom, Dick or Harry doctor who might decide to take my leg, without trying to fight it; if they found infection near the bone. No Amputation because of stupid doctor practices. Period. I've got full mobility of my foot, my toes and I'm warm to the touch all the way down. BUT the infection is ONLY between the screws top and bottom. AND historically it HASN'T been in the bone. No one wants to believe that it is that way. EVERYONE wants to ASSUME the worst and work from there.
I REFUSE TO GO INTO SURGERY EXPECTING THE WORST.
I told him that if I wanted to go around the corner to the local lawnmower guy; that I had as much chance of finding someone of the same caliber as the original surgeon in that field without any kind of referral. His reply? "Oh, I'll ask around the lunchroom to see if anyone is interested in taking on the case!"
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