For me it started out with a whimper, barely a blip on the pain scale of one to ten, a simple outpatient surgery by one of New York’s better podiatrists. It would have me in and out of his office in fifteen minutes. A procedure so basic and benign, but one that would immediately, and for years to come, throw me into a swamp of odd initials, misdiagnoses, infections and most of all abject pain. At times it would be so crippling I would start to doubt my own sanity. If you’ve been here I’m sure my story is basically the same as yours, just the names are different. If you know of someone with chronic pain, you’ve been witness to the wincing moments of muted rage and fear. If you’re not familiar with CRPS or RDS, read on. This story is going to border on the surreal, if not that of science fiction.
I was about a year away from doing the Northwest Passage trip. Like my crew, I was doing as I’d asked of them, which was to take care of any nagging medical issues, regardless how small. Get things squared away before we headed out for five months of trying to do what few had done before us: go by boat from the Atlantic to the Pacific Ocean, via the Arctic. A year earlier I’d broken my baby toe landing from an ill-advised jump from my boat. All this occurred during a Panama Canal transit voyage. The toe healed, but from time to time, perhaps every six weeks, I’d suffer a quick sharp pain. It was nothing debilitating but definitely bothersome. On advice from friends, I made an appointment with a renowned podiatrist in New York. In no short order, he found the culprit. There was a tiny sliver of bone chip that occasionally wedged itself sideways in the joint of my little toe. I made an appointment for him to remove it, a fifteen minute surgery at worst. That would be that. While flat on my back on his table, as he was removing the bone chip, I noticed excess dust behind him on the floor. It was coming from his air conditioner; my mother used to call them “dust bunnies.” Both sights hinted that things would not be that simple, and indeed it was the beginning of years of trying to correct what he was now damaging. The result is a long, expensive, tedious, and at times, completely depressing story that I’ll do my best to keep short.
After this small chip removal, three days later, my toe had doubled in size and was dark purple. I went back to the doctor to register my growing concern. His response was, “It’s supposed to look like that.” Within hours, I was in the office of a good friend who is a well respected back surgeon in New York City. One phone call later, and I was in the office of a wonderful orthopedic surgeon who, after poking and prodding for a few minutes ordered and MRI. A day later the results were back from the MRI where a very obvious bone infection had been spotted. Inside of a week, I was admitted to the Hospital For Special Surgery in New York. From here Dr. Marty O’Malley and his team proceeded to open my toe and “drill out” the infection. I was sent home with great encouragement and lots of confidence that the infection was arrested. Two week later, my toe was swollen and purple again. The pain was as though the doctors were still cutting it but with a white hot knife. Back to Marty, back to an MRI, back to HSS where once again they doctors had to drill out yet a new infection in the bone. Two weeks later the pain was worse than ever. My toe simply couldn’t take any more surgery, so I was sent to see an infectious disease specialist. He agreed that some infection was still present and ordered a six-week portable IV drip. I was to self-administer the antibiotics to myself twice a day, for an hour at a time. The rest of the day I went about my business with a small tube and shunt dangling from my arm. Keep in mind that at the time the “rest of my business” consisted of trying to prepare the boat and crew for the upcoming five month arctic trip which, according to history, had about a thirty-percent promise of success. It was at this point that thanks to some very greedy men and impotent government agencies that the financial wreck of 2008 came down around us, and I’d lost all promised funding for the trip.
Check back soon for the second installment of this three-part blog…
OMG, reading this I can completely relate. Two years ago I had a solid oak bench fall on my bare left foot and crush the 3rd toe and fracture the second toe, plus soft tissue damage to foot . After 3 surgeries with ended in amputation of my 3rd toe. I had a year of nasty pain still, Drs and an MRI and 5 alcohol shots and cortisone shots. Finally had 4th surgery to remove a tumor off a nerve on the bottom of my damaged foot . 12 days later went back to podiatrist with flu like symptoms and burning pain under my cast too. I had Staph . Had to have a Debridement surgery to clean it out. I woke up 2 days later feeling like my foot exploded ! Went to Dr and ended up in Hospital with Cellulitis. Had another Debridement and wound was left open to be cleaned out, nerves exposed! I was dry heaving and shaking from pain. Ended 6 day stay with a last Debridement. 4 months later I am left with a clawed 2nd toe. Swollen and purple foot if not elevated. My foot feels still crushed with earth shattering stabbing pains and electric shocks too. Depression and anxiety now haunt me . Can’t work or sleep. Bouncing from Dr to Dr. I know that I have CRPS II aka : Causalgia. Look it up. Trying to collect SS Disability . Hang in there I feel your pain! Literally! I miss my physical activity too. I am in Connecticut. Take care, thanks for sharing .