In lieu of a plaster cast, he’d bolt a metal hinge device called an external fixator onto the outside of my arm. It would be held in place by three-inch bolts screwed through my arm and uninjured parts of my bones. I had no idea what he was talking about. But he seemed knowledgeable and competent.
When he told me that if it were his arm, he’d want the surgery done, I signed the consent form. I wanted a fully functioning left arm. On my way out the door, I turned and asked my only relevant question of the day: “How many of these fixator things have you installed?” The surgeon gave a curious answer. They were fairly new, he said, but his practice group had installed three or four of them. I left without a second thought.
Surgery No. 1
Two weeks later, I woke up from surgery with my left hand and lower forearm paralyzed.
I went to physical therapy diligently, three days a week for four months. Every two weeks I had follow-up appointments with my surgeon. He’d gaze off into the corners of the room and tell me that the paralysis was temporary, that my arm would fully heal. I grew increasingly unsure of that, though, and my doubts often kept me awake at night. Finally, my physical therapist advised that I should request a nerve conduction test.
I sat in the specialist’s office looking at the flat green line on an old-fashioned oscilloscope. I prayed for a blip. I stared intently, willing with all my might for an electrical signal from the nerve in my arm to set the green line jumping. The line stayed flat. Then the specialist turned to me and asked, “Mr. O’Connell, what do you do for a living?” With that question, he gave me the results of the test, which also told me that at age 48 I’d just joined the ranks of the disabled.
I looked up sadly and told him. “I’m a construction guy who loved to work with his hands.”
Surgery No. 2
Many surgeries cause temporary numbness; very few result in permanent paralysis, as mine had. Months later, I learned that the damage had probably been caused when my first surgeon was placing the external fixator device on my arm. Most likely some of my radial nerve had gotten wrapped around his drill bit, turning the nerve to mush. But even without this later knowledge I no longer trusted my surgeon. I began looking for a new one to repair the nerve damage.
I talked to everyone I could find, studied the Colorado physician licensing Web site and found a few physician-rating sites on the Internet. What I needed was a list of surgeons who had pulled off miraculous, come-from-behind arm repairs, but none of the Web sites showed that. Eventually, I settled on someone who had done a lot of arm repairs for Colorado Rockies pitchers. I figured if the Rockies trust this doctor to fix million-dollar arms, he must be very good.
Surgery No. 2 took place 41
2 months after the first one. It was expected to be a simple nerve repair. In a worst-case scenario — if it turned out the arm nerve was beyond repair — the surgeon would remove the sural nerve from the back of my left calf and use it as a donor nerve graft for my arm.
To understand what my surgeon was talking about, I had spent $300 on a copy of Gray’s Anatomy of the Human Body, long a staple of medical students and doctors. There I learned where the sural nerve was and the part of my foot that would become numb forever if it was removed. I read about nerve grafts on a number of Internet sites and learned that short nerve grafts — of one to three centimeters — usually bring back some motor function, while longer grafts seldom work.
When I awoke from the surgery, I looked down and saw that my left arm and left leg were heavily bandaged. It had been a worst-case scenario. A few minutes later, my new surgeon walked in. My first question to him: “How long’s my graft?” He stuttered a bit, looked down and said, “The nerve [in your arm] was totally destroyed. Seven and a half centimeters.”
I broke down crying: “This will never work!” The surgeon tried to calm me, saying that sometimes, in younger patients who don’t smoke, long grafts do work. A few days later, when the leg bandages came off, I found a long incision closed by 40 staples. It looked like a giant zipper.
My research had taught me that nerves grow back at glacial speed; a donated nerve is expected to take six to nine months to once again function. My arm’s nerve never fully recovered; I now had 13 paralyzed left arm muscles and a permanently numb left foot.
Surgeries 3 through 7
The internal scar tissue created by both surgeries had caused my arm to stiffen so that I couldn’t rotate my hand in either direction. My surgeon was confident that cleaning out the scar tissue would return 100 percent range of motion to my arm. Surgery No. 3 took place in August 2005. Cleaning out the scar tissue worked. But I soon learned the meaning of the words “hospital-acquired infection,” in this case a deep-muscle staph infection called MRSE acquired from a surgical drain tube.
MRSE stands for methicillin-resistant Staphylococcus epidermidis and, like the better-known MRSA (methicillin-resistant Staphylococcus aureus), the bacteria that cause it reside harmlessly on everyone’s skin. But MRSE loves to latch onto all things silicone and metal, such as drain tubes, breast implants, heart valves — and anything made of titanium. When it gets under the skin, it wreaks havoc.
That’s what happened to me.
It took four more surgeries — one every other day — to debride (wash out using sterile water and antibiotics) the staph bacteria busily trying to devour my arm.
These were surgeries 4, 5, 6 and 7. In No. 5, they pulled out the titanium implant to save my arm. Doing so meant that someday I’d need to have a new one put in. For a week I lay alone in an isolation room (required for any patient with an infectious disease), assaulted in turn by fear and depression, with nothing to do but ponder my arm.
It had been 11 months since I’d fallen off the ladder. Now I had a damaged elbow without its needed titanium implant, a paralyzed hand and a forever numb foot. I was seriously considering asking for my arm to be cut off when my surgeon walked in. He surprised me. “Kerry,” he said, “I am so sorry for giving you this infection. I don’t know how it happened. You’re the last guy on earth who should have to endure this.”
He said it humbly, with sincerity. It was an unforgettable act of courage on his part. It gave me the strength to not give up hope and to consider yet another trip to the operating room.
Surgery No. 8
My last hope for getting back the use of my left arm was to have three working tendons from the underside area of my left arm and hand relocated to the paralyzed top side. (Replacing the titanium implant would need to wait.) This time I purchased three textbooks, then used them to do what engineers like me do well. I built a spreadsheet, one with all of the possible combinations of tendon surgeries done in the past hundred years, analyzing the pros and cons of each. One Sunday afternoon my surgeon and I spent two hours on the phone reviewing it. Together we came up with a plan.
In December 2005, I mustered the courage to agree to Surgery No. 8. As I lay in the pre-operation waiting area, I was so scared that I couldn’t speak. The physician’s assistant came in with the consent form and asked, “Now, which tendons are we moving today?” I was stunned — didn’t they know? I handed her a copy of my spreadsheet, and she copied down the three Latin names on it. I read the consent form, checked that the names were right, and signed it.
An hour later my surgeon walked in and said, “Kerry, we’re moving the pronator teres today, right?” I shook my head no. Once again I was speechless. I handed him my spreadsheet. “Oh, you’re right, it’s the FCR [flexor carpi radialis].” I nodded yes.
The last thing I remember as they were wheeling my gurney down the hall to the operating room was a physician’s assistant shouting to the team, “Come on, guys, we have to get it right this time!”
They did get it right.
Seven months later, the surgeon declared my arm “functional” and pointed out that I’d learn new ways to do things. I was strong enough to win a left-handed arm-wrestling match with my 10-year-old daughter. But looking back to that day in the first surgeon’s office, the option of forgoing surgery and having a loose elbow wouldn’t have been a bad choice.
Instead, I left the medical system damaged and broke. In addition to the large amount my insurance covered, I’d spent more than $20,000 of my own money.
And then . . .
Fast-forward to the spring of 2008. One day at home, when I tried to lift a 90-pound box using only my right arm, I suddenly I felt my right biceps spasm, then tear. It was like I’d touched a live electrical wire. I realized I had just seriously injured my only good arm.
For the next six months, I prayed — please, please — that my arm would heal itself. I’d tell myself, “Hey, it doesn’t really hurt that much.” Then, one day in the shower, I noticed that my right biceps muscle had changed. It was bunched up, looking like a Popeye’s cartoon version of a bulging biceps. I had to do something.
To ask a surgeon the right questions this time around, I needed more than my copy of Gray’s Anatomy. At a nearby medical school library, I researched biceps tendon ruptures. I read articles in the Journal of Bone and Joint Surgery. One article described a simple pinch test to determine if the biceps tendon has detached from the radius bone. It confirmed my worst fears: The tendon was detached.
I found an online database of information submitted by several hundred patients about their outcomes from this kind of biceps injury and created a spreadsheet with detailed information on each of them. A few patients had elected not to have surgery. And about 15 percent had experienced a variety of complications.
And then I went back to my second surgeon. He had been responsible for my life-threatening infection, but he’d shown the courage to apologize, and he always answered my many questions.
“How long ago did you tear it?” he asked when I went to see him. With great embarrassment I responded, “I don’t remember the exact date, but it was more than six months ago.”
That wasn’t good. He explained that most doctors would say an injury ignored that long couldn’t be repaired. Then he told me that he and a Mayo Clinic surgeon he knew were having great success in fixing old ruptures. He practically glowed as he told me that he had performed 39 of these biceps surgeries that year, with zero complications.
I unrolled my spreadsheet, and we discussed all of the major complications I’d found. Some of his comments were reassuring. Others made me very nervous. I’d be in a full arm cast for six weeks, which would make eating difficult and typing or writing nearly impossible. I told him I needed time to think about whether to have the surgery. He said I should do it within the next two months or not at all.
I never did muster the courage to go under the knife again, a decision that some people can’t understand. Most days I’m quite happy with my personal policy of surgical abstinence. There are days, though — when I’m lifting something heavy or trying to work on my car — when I’d give anything for even one full-strength arm.
Crucial information on outcomes
Before my first arm surgery, I might have have tried to find out more about my doctor by searching the National Practitioner Data Bank, had I known it existed.
According to research done for me by Robert Oshel, former associate director for research and disputes at the data bank, 249 of Colorado’s thousands of doctors accounted for $330 million in medical malpractice payments between September 1990 and June 2010; that was half of all the state’s payouts during that period. But the database would not have told me if either of the surgeons I used was among those 249 doctors; all of the names in the database are hidden.
Twenty-five percent of 100 elbow fixator installations reviewed in a 2008 study resulted in complications; 10 percent of them, like mine, were serious. If you search the FDA’s MAUDE (Manufacturer and User Facility Device Experience) database for fixator devices, you’ll find a handful of reports of minor damage to these items during shipping — and you’ll find my case. My case is there only because I reported it. The full truth about elbow fixator devices is difficult to come by.
If you’re considering buying a $30,000 car, you can refer to the government- required manufacturer’s sticker containing information about such things as the price, gas mileage, crash tests and the car’s rollover rating. But if you’re considering a $30,000 medical procedure, you often have to make a choice based solely on what a doctor does — and doesn’t — tell you.
Someone once chastised me, saying that if I was stupid enough to fall off a ladder, I deserved what happened to me. In some ways he was right. It took a lot to pound ladder safety into my thick head. But we shouldn’t all have to learn everything the painful way. I believe that If I had had access to some solid, physician-specific outcome data and better information on the risks and benefits of the medical devices my doctors were proposing, even I could have made health-care decisions that wouldn’t have resulted in my having to type this essay with one hand.
O’Connell is a senior project manager at Mortenson Construction in Denver and a patient-safety advocate. This story was excerpted from Narrative Matters in the journal Health Affairs.