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!"