It started simply enough, with a new office chair.
But human arms, it turns out, are like human legs: They're not all the same length. Within a couple of months of getting the new seat in late 2003, a sharp, electrifying pain shot through my upper left arm whenever I raised it, picked something up, rolled over on my left side in bed or even tried to brush my hair.
After consulting the nurse at work, we lowered my chair's armrest. The pain didn't get worse, but it didn't get better. So the nurse suggested an orthopedist at a nationally ranked Washington hospital who specialized in shoulders.
An X-ray revealed a calcium deposit, a tiny mineral mass, technically called calcific tendinitis, within a tendon of my shoulder. As the new chair jammed my upper arm up against the deposit, the area became inflamed. The doctor first suggested anti-inflammatory medication, but by July 2004 the medication had diminishing impact. So he recommended a cortisone shot. Years earlier, I'd had one for an elbow. The pain from that long needle was memorable -- and it hadn't worked.
"This works with 95 percent of my patients," the doctor offered confidently. I had the shot -- and I soon regained full use of my arm, pain-free.
LESSON: Ergonomics pays little attention to office chair armrests, but they can trigger serious problems -- and complications.
By October, three months after the injection, the pain returned. The doctor gave me a second cortisone shot. "Don't worry," he said. "This works with 95 percent of my patients."
"You mean 95 percent of the 5 percent it didn't work with the first time?" I said.
In my now-voluminous medical records, which I obtained eight months later (at the cost of 42 cents a page), his comments from that session include this: "Certainly I think that in someone her age, relatively young, I do not like to give multiple cortisone injections."
(Multiple injections are often discouraged because animal studies have shown they can weaken tendons and soften cartilage.)
The second shot helped, but again wore off. The pain deepened. The doctor gave me a third shot -- never mentioning his reservations about multiple injections.
"Don't worry. This works with 95 percent of my patients," he said. I tried to do the math -- 95 percent of the previous 5 percent, and of the first 5 percent -- but he quickly interjected, "Really, this should do it."
The third shot also wore off. The pain became far more severe.
LESSON: Be wary of doctors who recommend repeated applications of treatments that don't work or decrease in effectiveness.
The doctor then recommended that he perform arthroscopic surgery to remove the calcium. He described it as a simple procedure -- "like squeezing out toothpaste," he said, because calcium is soft and squeezing it out is straightforward.
In January this year, to help me function until surgery, he gave me a fourth cortisone shot.
I had the surgery on March 23. Things went badly from the start.
I told the doctor, chief anesthesiologist and two nurses not to give me morphine for pain; it had produced severe nausea after a previous surgery. But in post-op, I was indeed administered morphine for pain -- and was told so only after the fact. When I got home I was marooned in bed, overwhelmed with nausea, unable to take care of myself.
LESSON: Patients can play a role in determining anesthesia, including talking through options with the anesthesiologist before surgery. But it may not be enough to tell medical staff about preferences or write them on pre-op forms. Have it written on the wristband listing allergies, even if it's not a full allergy.
Before leaving the hospital that day, I had told the nurse I wanted to file a formal complaint. She wrote down the details and said that I'd be contacted the next day by someone on "the committee." No one ever called.
The discharge nurse also failed to give me the surgeon's post-op instructions, including how much to use the arm (exercise turned out to be important) and whether to use ice or heat to help swelling and pain. I was one of the last patients of the day -- my operation had been delayed by more than two hours because the previous case had had complications -- and I had the distinct feeling my discharge was expedited.
LESSON: Schedule surgery early in the day, when staff is fresh and delays are not an issue. (This is particularly helpful if fasting is required before surgery.) Also, get post-op instructions in advance, before the surgery, or find out what documents the doctor intends to provide before leaving the hospital. I had to call back the next day and the doctor did not call me back until after the first 24 hours -- the period critical in getting the arm moving again.
The biggest problem, however, was that the surgeon had not removed all the calcium. My troublesome little deposit did not turn out to be like toothpaste; it was hard and embedded. The surgeon had opted not to take it all out -- a prospect he had never mentioned to me before the operation. Looking back on it -- and I'll never know for sure -- I also wonder whether the surgeon opted not to do the more complex arthroscopic procedure in part because of the previous case's complications and delay.
As I learned from one of his colleagues much much later, his peers noted that he was rarely the first doctor to arrive at the office or the last to leave.
LESSON: Before surgery, ask for an explanation of the full range of possibilities that might be faced during surgery, especially the worst case and other potential problems. Ask which tests may provide more information about possible outcomes.
Despite rigorous physical therapy three times a week and daily home exercises, the pain returned not long after surgery. I went back to the doctor. He gave me a fifth cortisone shot and said he'd have to do a second surgery to get the remaining calcium if the shot, plus more physical therapy, didn't do the trick.
They didn't. I went to the Middle East but had to return early due to severe shoulder pain. I reluctantly agreed to a second, bigger surgery -- to do what the surgeon said he was going to do the first time around. It would involve cutting into the tendon to remove the remaining deposit.
At this point, I was torn between finding a different specialist and holding the doctor and hospital responsible for helping solve the problem. I didn't want to let either simply dump me, which would require me to start all over with new clinicians and a new treatment plan. If there were further problems, I feared the different doctors would only blame each other -- and I wanted a clear chain of responsibility, despite my growing doubt about both the shoulder specialist and the hospital's national ranking.
LESSON: Make sure the hospital knows of any complications that occur, and take those complaints to levels higher than the people treating you. I filed two formal complaints. I started with the hospital's patient advocate, with a copy to the hospital president. I asked to speak to senior hospital staff, specifically about how the hospital intended to change practices to prevent a recurrence -- for any patient -- of the problems I had with anesthesia and post-op instructions.
The second complaint was to express my concern about the second surgery. Although my insurance had paid some charges already, the hospital wrote to say I would not be charged for the first surgery. The catch, of course, was that I had to have a second, bigger surgery. Two senior medical staff did call to talk through the problems. Patients can also file complaints with state medical boards.
I had the second operation in early May to remove the calcium and then repair the tendon. It involved four incisions, double the number of the first operation, and much more complicated post-op care. For the next six weeks, my arm was in a big black contraption -- a bulky, half-foot-thick pad underneath the arm that separated it from my body; it was held on with a sling-like strap. I had to wear it night and day.
I returned to work after a week, although I was still unable to use the arm. In the meantime, I continued physical therapy.
But the pain crept back steadily until it was relentless in my back, up high into the neck and down into the biceps. It felt as if razor blades were cutting up my body. And it didn't respond to therapy.
To alleviate pain, on my own initiative, I went to a rehabilitation specialist. I used a TENS machine -- for transcutaneous electrical nerve stimulation -- which sends electrical pulses to the body through four wires attached to a small case the size of an audiocassette. It's supposed to stimulate nerves close to the skin, releasing endorphins and helping block the pain signals sent to the brain. And I had a weekly post-op massage for the shoulder.
Since the first surgery, I had also been on sleeping medication to ensure my body got enough healing rest, although the pain began awakening me often at night as it intensified. I tried hot baths, up to five a night, often in the wee hours of the morning.
But the pain became so profound that it triggered serious depression. I began to think I could not endure the pain indefinitely.
LESSON: Prolonged acute pain can trigger chemical responses in the body that bring on debilitating depression.
During a physical therapy session in late May, when I sobbed because lying on my back pulled the shoulder down and sparked excruciating pain, one of my increasingly concerned and dedicated therapists (there were three) paged the surgeon. When I explained the deterioration, he said there was nothing more he could do and I should go to my general practitioner.
I balked. I told him bluntly that he had been in my shoulder twice surgically. My internist had never been involved -- and would probably only send me to a specialist. So he called the rehabilitation doctor, who is a hero in my story. He immediately recognized the depression, explained what was happening and prescribed medication.
The depression diminished, and the pain eased slightly but not enough. In frustration, a therapist suggested acupuncture. I found someone the same day, and that night, after the treatment, I realized I was smiling for the first time since the ordeal began. It felt so good.
Unfortunately, it helped only for a day or two, which meant repeated and costly visits.
LESSON: Pain is a sign that the body can no longer cope or compensate physically. Dealing with it is the key to healing. Finding supplemental care -- such as a rehabilitation specialist or acupuncture -- can help. Learn about pain management before surgery, in the event of the worst case. Timing is critical.
I was too late. When I went back to the doctor, he said that I had developed frozen shoulder. The prolonged pain had prevented restoration of motion and effectively locked the shoulder. The American Academy of Orthopaedic Surgeons says it can take up to three years to regain motion. The frozen stage can last four to nine months, after which the thawing can take up to 26 months, it says. There's less information about the prognosis when it happens after multiple surgeries.
The doctor recommended a sixth cortisone shot -- still not mentioning his reservations about multiple injections. This time, it provided no relief at all. One option, he added, was to go in again surgically and remove the scar tissue and adhesions from the earlier surgeries. Adhesions are thick fibrous bands, sometimes compared to plastic wrap in the way they bind, that can cause pain by pulling on nerves. By this point, I was aghast.
LESSON: Keep notes from each appointment for your own records -- and in case you need to reconstruct what has happened and what a doctor has said.
I contacted the hospital's patient representative and explained the situation. She agreed it was "unacceptable" and made arrangements for me to see another surgeon -- at the hospital's expense.
The second surgeon agreed mistakes had been made in dealing with the pain, which produced the frozen shoulder. He put me on a powerful painkiller.
He also suggested a third procedure, called a manipulation, which is done under full anesthesia and forces the shoulder to move by tearing through the adhesions and scar tissue. "It's like ripping burlap," he explained, adding that it would probably be quite painful for a couple of weeks. Aggressive physical therapy should then help regain movement.
Even if I took that route, however, he acknowledged that I was unlikely to ever regain full range of motion -- and might still have to have the fuller surgery to remove the damage from the earlier operations.
I have since seen the first surgeon for an already scheduled checkup. I told him how angry I was: Two surgeries and six cortisone shots later, and I was in worse shape than when the whole ordeal started, with a rough long-term prognosis. He said if that was my attitude, I should no longer turn to him for help.
I'm mulling it over now. Meanwhile, I'm still on painkillers and sleeping medication. Most weeks include up to 20 hours of shoulder treatments -- physical therapy three times a week, acupuncture twice a week, post-op massage once, and the rehabilitation specialist as often as he can fit me in; he's so popular that his office is now booking for January. It costs me over $450 a week outside what insurance covers. And I'm still in acute pain.
Yet it's hard for my colleagues and my friends to understand how debilitating it is, since it is an invisible pain -- without cast or sling or conspicuous impairment.
At my annual physical in August, my internist urged me to go on disability until the shoulder heals. That's not a viable option. I've now turned to the rehabilitation specialist as the lead doctor to deal with the pain. If and when the pain diminishes, then I have to decide what to do to get the shoulder to work again.
FINAL LESSON: A seemingly straightforward medical problem can snowball into a crippling long-term condition. When that happens, it's harder to find help than might seem due you.
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