To give a very brief background on my situation, about seven years ago, I was sleeping on a regular mattress, rolled over onto my left side in my sleep, (that hip was permanently dislocated many, many years back by a VA doctor’s screwup,) and suddenly had a bedsore.
I tried to get the VA in San Juan, PR, (where I was living at the time,) to treat it, but over the course of about three and a half years, and several hospitalizations for it, they refused to do anything more than passive treatment, and so I moved back to Albuquerque to get treatment out here.
It took two more years before they admitted me for treatment here, and ultimately decided to send me home, even though the bedsore was open to the bone, tunneled down and underneath the femur, and was infected. A few days later, before I’d been discharged, the infection went septic, (the infection spread to my entire body,) and they had no choice but to operate.
They’d initially refused because, according to them, any surgery would NEVER heal because I’d been through radiation treatments to stop extra bone growing through the soft tissues some 25+ years before. The ended up doing four surgeries, ultimately cutting off the top six inches of femur and leaving the wound open. Amazingly enough, just as I’d told them over and over, I healed up well, the wound filled in and closed rapidly, and I was discharged.
After initially feeling much better, I became very lethargic all the time, not having much energy for much of anything. After a power outage at my apartment building, the special medical air mattress I have deflated for a few hours while I was asleep and I wound up with a new bedsore on my right side up by the crest of the pelvis. As with other bedsores I’ve had in the past, (with the exception of that one on my left hip that just wouldn’t heal,) I treated this at home and it has been healing up very well. This brings us to the present…
I made an appointment to see my doctor, as he’d requested, about six months after my discharge. At that time, except for the lethargy and a well healing bedsore, I had no complaints. Two weeks before I came in, a small hole opened on my inner left thigh up in the groin area and was oozing pus. I started putting dressings on it and figured I’d point it out to my doctor when I came in. I got a call telling me my doctor would be out and I’d have to reschedule, but when I called back, told her that I did need to come in and see a doctor about this new issue.
When I came in, first the outpatient nurse saw it, then got a doctor I had for a short period of time during my previous stay and with whom I’d had severe personality clashes with. This time, he was cool though, (I’m assuming because everything that I’d said needed to be done in that previous stay had proven accurate,) and was blow away when he put the stick end of long swab into the hole, (something I hadn’t even thought of doing,) to check it’s depth, and it went in 8cm, (to about the middle of the thigh.)
That was the last Wednesday of last month. It was arranged that I’d be admitted the following Monday, (January 31st,) and I was given a buttload of supplies to take home with me. (FOUR full sized paper bags of dressings, solutions, thin gauze strips, etc., for four days of continuing to do my own dressings. Because of things like this, I have a closet that is full of medical supplies such that I could literally treat someone who’d been in a bad car accident from the supplies I had, including using one of the five suture kits I have to stitch up cuts. LOL…)
I came in at a little before 9AM on Monday, and literally didn’t have time to unpack before I was being sent hither and yon to various places for tests, examinations, etc. This continued every day throughout the week, and into yesterday. So far, I’ve had four meetings with people from the orthopedic surgery team, two from infection disease, 8 X-Rays, an MRI, a CT scan, a PET scan, an ultrasound, two blood draws, 18 times sticking me to get four IV’s in for IV infusion of antibiotics, two times when the entire spinal injury team has come to look me over, and three attempts before successfully getting a PICC line in, (that is a fancy IV that goes into a big vein in a bit below the armpit on the inner arm and threads through to the huge vein just above the heart, this being necessary because after all the abuse my veins have gotten over the years, it’s very hard to get an IV into one to begin with, and they’ll tolerate a max of four, and usually only one or two, infusions before they “blow”, or swell closed and any try to infuse anything just leaks out the entrance location for the IV and gets into the tissues around the vein.
As it turns out, they didn’t get all of the bone infection before, and where as it was not in my pelvis on my previous visit, (when I’d told them just to cut off the leg to keep it from getting to my pelvis, which they refused,) it is now back in the femur of my left leg, into all the extra bone that’s grown in the soft tissues, (called “ectopic bone”,) and IS now in my left pelvis rather aggressively. In the last seven months, it has eaten completely through the upper branch of the pubic bone, which is about twice as thick as your thumb and approx. four inches long.
The Infectious Disease people say that there are pockets of infection, (basically abscesses,) that are not “communicating”, or in simpler terms, aren’t connected to each other. It was one of these that ended up working it’s way to the surface in my groin area and started draining. They feel the only way to fix this infection is for the orthopedic surgeons to go in and cut out all that infected bone and tissue.
The Chief of Orthopedic surgery, who had refused to allow surgery last time around until the infection went septic, disagrees, saying that these pockets ARE connected and will all drain through that hole, (a bit larger around than a toothpick and 8cm long,) and somehow, that will stop the infection in my pelvis from spreading.
Two other orthopedic surgeons said the only way to fix this permanently is for me to get a hemi-pelvectomy, where they amputate the left half of my pelvis, (and the leg goes with it,) to keep it from spreading to my right pelvis and ultimately requiring them to cut me in half above the pelvis.
The Chief of Orthpedic surgery disagrees.
The things the spinal ward doctors are having done to deal with this infection is putting a cloth drain, (just a ¼” wide piece of gauze,) soaked in a saline/5% bleach solution, (called “Dakin’s soluttion”,) into this hole, then covering it with the same dressing I was using at home, and changing this twice a day.
The Chief of Orthopedic surgery disagrees with this treatment.
Today, he came down with a model of the pelvis and, (I was in bed at the moment,) and told me all about how if I had this hemipelvectomy, I would never, ever be able to sit in the wheelchair again because, in order to sit one has to sit on both of the bony prominences at the bottom of the pelvis. He insisted that I was still sitting on both of these prominences when I pointed out to him that when I’m sitting up, due to the severity of my scoliosis and the approx. 50 degree tilt of my pelvis, I only bear weight on my right buttocks to begin with. I saw him in the hall a few minutes later after going outside to have a cigarette, and SHOWED him that I can pass my hand underneath the left prominence when I’m sitting in the chair, and suddenly, the problem because that the scoliosis would get worse and my pelvis would now turn to an even greater angle because the left leg’s weight would no longer be helping pull it down. I didn’t even get into the fact that my left leg, when it’s sitting on my footrests or the straps above pushes UP on that side of my pelvis with him.
Once again, his advice, (just as before,) is for me to simply go home, WITH an active infection, and simply apply a dressing to absorb the pus that oozes out, and he claims that the bone infection in my pelvis will not spread, in spite of the fact that it HAS spread aggressively into my pelvis and already destroyed a good sized chunk of bone in there.
When I’ve pointed out the cases I’ve read about where other’s who’ve had hemipelvectomies DO use wheelchairs, his answer is that they do not have spinal cord injuries. (Which is true from the cases I’ve found so far, all of which have involved either some very traumatic injury to the pelvis or bone cancer in the pelvis.) What I see in this is that I’ve got more practice in the wheelchair than they have had prior to using one.
One of the strangest arguments from this doctor who wants to do nothing is that, BECAUSE the bedsore that wouldn’t’ heal previously, and the infection in the underlying bone, required surgery after it went septic, and against his every absolute prediction, I healed up just fine, this somehow caused the infection that they cleaned out before to spread into my pelvis and is the cause of my current problems. So according to his logic, my currently far worse bone infection and more dire choices are NOT because he refused to simply amputate a severely infected leg, but because after NOT doing so, and having the infection spread go septic, I dared to heal up against his every prediction and therefore didn’t give the infection an easy route out of my body.
I’ve asked MY doctor to see if he can find an outside doctor who can give me a set of fresh eyes with a consult, and he said he’ll try, though the only place he knows of that has done this procedure is at the UNM hospital. So we’ll see what he can come up with. If he can’t find a doctor who’s done this before, I’ll have to either try to find one on my own or just go by the information I can gather on my own from the ‘net.
As I’ve said elsewhere, the vast majority of doctors, nurses, techs, and aids are very good at their jobs. There always seems to be one somewhere in some critical position in the “chain of command” who decides against whatever I’m needing to have done, vetoes it, and in the end, what I have said needed to be done ends up being done anyway, but usually with far more drastic results.
So far, this doctor who just wants to do nothing has not said he won’t allow this procedure. In fact, when I asked him about it, he specifically said that the decision would be mine. I’m just hoping that he doesn’t change his mind.
Time will tell if I do make the decision to get this surgery done…
Dave
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