Well, my daily update has been turned on it’s head since I haven’t been able to update my blog on a daily basis, but I do want to continue to keep a record of the way the V.A. deals with our vets, primarily using my own experience, but also occasionally relating those of others I have met and meet while in the hospital.
This update is late because I had to go through my records to pull out the relevant documents for the doctor, (I’ll call him Dr. “Q“,) I’m seeing later this morning, (Friday,) morning to get an outside opinion on what to do with this infection in my left thigh and pelvis. These records are only those from my last admission, (Dec. 29th, 2009 through June 24th of 2010,) and this, (I came in for a check with my doctor on Jan 26th and was admitted on the 31st,) but came to around 2,100 pages long.
I’ve been going through all these records to pull the relevant documents out to give to Dr. “Q” so he has the information he needs to give me a good opinion on whether or not to have surgery to cut out the left half of my pelvis, (which would take the leg with it, of course,) and try to get rid of this whole bone infection mess once and for all, or go on a lifelong course of antibiotics to try to slow down how fast it spreads and ultimately dissolves my pelvis.
If I repeat certain things here, please forgive me, but I’m going to try to cover all the factors I’m having to weigh as I make this decision.
For a brief recount of the history behind this, on the night before Thanksgiving, 2009, I rolled onto my left side in my sleep and the pain that would normally wake me up just didn’t for some reason, and I ended up lying on that side all night long. That hip was really screwed up because of having to have the ball cut off the femur way back in the very early 1980’s after my spasms dislocated, and totally destroyed the socket, on my left hip. I woke up with the bedding soaked with blood and a brand new bedsore on that hip.
I went in to the VA out there in Puerto Rico, (where I was living at the time,) as soon as I could, and had they done the surgery to repair that bedsore back then, all the subsequent problems I’ve had with my left thigh and pelvis since then could have been avoided, but the plastic surgeon, (who was an outside contracted doctor to the V.A., but normally did boob jobs, lyposuction, lip poofs, and so on in his regular practice,) turned out to be a total asshole of major proportions, and after three and a half years of putting repair surgery off, with me bouncing in and out of the hospital as complications developed, ended up telling me, “I wouldn’t operate on you if your life depended on it!” That’s a whole other story, but that was what made me decide to move back here to Albuquerque to try to get treatment here at this V.A. hospital for it.
They waited another two and a half years before admitting me to treat the bedsore, and even though I was dealing with a massive infection of the bone and soft tissues in my left thigh and femur, ultimately refused to do anything and were going to discharge me until, four days after they’d made that decision, the infection went septic, and “no, No, NO!,” turned into, “now, Now, NOW!”
I wanted them to just cut the leg off to prevent any infection from getting into my pelvis, but as has happened many times before that, they refused because they considered that to be “too drastic.” Back when the spasms were ripping my hips and knees apart, I developed bone growing in the soft tissues of that hip and had to go through pretty intensive radiation treatments to stop that growth, and in spite of having had at least two, and if I recall correctly, three surgeries on that hip immediately after the radiation treatments, and everything healing up both quickly and well, they decided that any surgery they did would never, EVER heal because that area had been irradiated in the past.
They ended up doing four surgeries in two weeks after things went septic to cut out all the infected bone and tissue, and surprise, surprise, the big hole they left in my hip, (about five inches long, three wide, and an inch deep overall with a crevasse down the center that was at least three inches deep filled in and healed up completely and perfectly in about seven weeks.
Looking through all the records, the same doctors who were declaring that any surgical wound would never heal before said exactly the same thing this time about doing any surgical repair for this infection I’m dealing with now. (They hadn’t quite gotten all the infected stuff out last time and it started up again, spreading halfway down my left thigh and into my pelvis, and in just seven months, ate completely through the front pelvic bone, which is about between one and two inches thick and four inches long, as well as eating away more of what remained of my left femur that they’d cut the top six inches or so off of in those four surgeries last year.)
Needless to say, this is a VERY aggressive infection, (staph infection,) so if I don’t have this surgery done, and just try to control it with antibiotics, it may slow it’s progression down, but it won’t stop it spreading or the deterioration of the bone in my pelvis that it’s doing.
This would lead to one of several problems down the road eventually. Either it would weaken my pelvis to where it would break when I take a fall out of my wheelchair and, with all the major blood vessels that run through the pelvis, have a good chance of cutting my femoral artery and I’d bleed out in just a few minutes and die.
Another possibility is that it would end up with a break in the pelvis, but NOT cut any of the big blood vessels, and they’d end up having to cut out half my pelvis anyway, or if the infection spreads to both sides, cutting out the entire pelvis and I’d be cut in half at the waist.
A third possibility is that the infection would go septic again at some point, and if I didn’t recognize the symptoms quickly enough, a systemic staph infection will kill you in just two or three days.
Another possibility is that the infection would continue to spread through the bones and soft tissues until it is in my spine as well, and far enough up my trunk that even cutting me in half at the waist wouldn’t get rid of it and I’d just be waiting to die of the staph infection shutting down my organs as it reached them.
The last possibility is that the infection would get into my spine and eat that way and I’d end up getting cut in half at the waist.
As you can see, not getting this surgery done now to take out half my pelvis leaves me facing a slow, but inevitable, SUPER major surgery, (at best,) that would leave me bedridden in a nursing home for the rest of my life. The only question is how long would that take.
The alternative is getting half my pelvis cut out now, which is dangerous to begin with. The only study I found on hemipelvectomies done on spinal cord injured patients with massive infection of the bone and soft tissues shows a 25% mortality rate from the surgery alone, but doesn’t have any information on the general health of the patients involved, so I believe my survival rate would be better than that because I’m still in pretty good health outside of the problems caused by this infection.
The possibilities, (assuming the surgery is successful,) are that I’d get my quality of life back to a certain degree, even though I’d have to relearn how to do a lot of stuff because of having half my pelvis removed. (One common problem I found on several sites devoted to people who’ve had hemipelvectomies, though all of them are people who had bone cancer, or else some terrible accident that crushed half their pelvis, was that they tend to fall into the toilet until they get used to having a lower body only half as wide as it previously was. LOL…)
The other is the risk that I’d never be able to get back into the wheelchair again because of balance problems and I’d end up stuck in bed in a nursing home for the rest of my life.
Looking at the things said by these people who’ve had the surgery done, though, shows them getting an artificial leg, (don’t ask me how they end up using it, since there’s no stump to attach it to,) using crutches to get around, or, (the most common if they’re going to be out and about for any length of time,) using a wheelchair. (I DO have just a LITTLE bit of experience with this one, and I’m really not seeing why it wouldn’t be possible since, with the severity of my spinal curvature, (scoliosis,) my pelvis is tilted 45 to 50 degrees as it is, and I already sit on my right buttocks, with almost zero weight on my left buttocks, already.
EVERYONE I’ve talked to who’s known me since, or shortly after, I was shot has said to get the surgery done, and I’m tending to agree that, given my options, that’s the best choice I’ve got.
I have an appointment in the morning with the only doctor in New Mexico who does the hemipelvectomy surgeries, (he works at UNM Hospital,) and he’s the surgeon they’d send me to anyway if I decide to get this done.
A funny thing happened when I called to make the appointment for this consult with him in that I totally forgot to tell the secretary that I’m paralyzed. She’d said something about my needing a special little card to put on my dash board to park in the patient parking, and I just said that wouldn’t be a problem since I’ve got the handicapped parking placard, but it didn’t even occur to me that she would be thinking I could walk. I went down to drop off the medical records and disk with all the X-Rays, CT, PET, and MRI scans on it for them to copy on Monday, and I’m very glad I did, since it took me over an hour just to find the place. (This is a new building, on a new road, and my GPS thing in my car doesn’t even know it’s there.)
So… I’ll see what he has to say after we’ve talked and he’s had a chance to go over that info I gave to him, and that will affect my final decision. I’m also going to be getting a new set of CT, PET, and MRI scans in two or three weeks to see how much farther this infection has spread since I checked into the hospital a month ago, and that will also be a big factor in my decision.
At least THIS TIME, the V.A. doctors aren’t saying they absolutely won’t do this like they have with so many other procedures that they deemed, “too drastic,” only to end up doing them in the end anyway along with having to do even more drastic surgery to deal with the problems I was trying to prevent in the first place.
THIS time, they seem to be leaving the decision up to me, though these doctors in critical positions here at the VA are telling me once again to just go home and live with it until it either kills me or ends in a life threatening emergency.
I’ll post again in a few days to relay what this doctor says, along with talking about some of the amazing things one finds out about the attitudes of the various people dealing with my case as revealed in those 2,100 or so pages of records. Some of it is pretty funny… J
I’m just hoping this guy is as good as everything I’ve read about him and the feedback his patients have put on the internet paint him up to be. What I can say is that God has always helped me through whatever life has thrown at me, and I’m putting my trust in Him to help me make the best decision and as He always has, help me to get through whatever the results may be.
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