A Change in Pain
Last updated: July 2020
Early in September last year my pain changed. I don’t remember it happening on a specific day in a sudden way, but gradually my left knee grew more painful. It would throb with heat and hurt more at certain times without reason. Over the space of two weeks I quickly lost strength in my left leg as the pain intensified.
I didn’t want to go to the doctor because I was afraid of what he would say. I had a specific fear that haunted me so much, I couldn’t say it aloud. But my husband encouraged me to make an appointment to get my knee checked out.
Knee replacement surgery with infrequent pain
Twenty years ago, at age 16, I had both my hips and knees replaced. My artificial joints had held up well over the years and I only had infrequent pain in them. My flare-ups would affect my other joints, but sometimes I did have more pain around my knee caps which had been left in place by my orthopaedic surgeon and thus were original, well-worn equipment.
This new knee pain, however, felt different. It was severe and felt as if it was emanating from the center of my knee, behind the knee cap. The joint felt warm, swollen and more sensitive to the touch.
Problems with my knee replacement
My rheumatologist quickly referred me to an orthopaedic surgeon for a consult. Since my other joints were not bothering me, he was afraid I was having a problem with the knee replacement and not my rheumatoid arthritis. In one way this was good news because we didn’t have to explore new treatment for my RA, but it was also much worse news because I was facing the possibility of surgery.
Various tests to rule out problems
The first orthopedic surgeon took my history, looked at my knee and suggested some tests to begin ruling out problems. We started with x-rays, which actually looked fine. Other than the obvious damage from years of arthritis, the knee components were intact. Next, was a bonescan involving being injected with radioactive dye. I had to wait for bone absorption of the dye and return for a full-body scan of my bones, making for several long days.
The technician gave me a disc to take for my next doctor’s visit. When I came home that night I popped it into my computer and took a look. My husband thought this was a bad idea because it would only add to my stress, but I couldn’t help myself as I worried about what lurked inside my knee. In my mind I envisioned an angry green, horned troll squatting inside my knee—I just had to see for myself. I had no idea what the pictures meant, but my knee was lit up like a Christmas tree. The scan comprised many layers, but in each one, the bones around my knee glowed brightly. “Something must be very wrong,” I thought to myself.
An infected knee prosthesis
The doctor sat us down and explained my worst fears had been realized. He believed I had an infected knee prosthesis. Somehow a colony of bacteria had found a home inside my knee and the infection was causing my pain, weakening it and gradually spreading. My imagination hadn’t been that far off on the angry horned troll. Without quick action the infection could spread to my other artificial joints or my blood.
Then the doctor did a wonderful and rare thing—he admitted he was not the person to treat my knee. If I ever needed some arm or shoulder work he could help, but my case required a highly-skilled knee specialist. He referred me to an orthopaedic surgeon friend who had just finished a fellowship specializing in knee replacements. Although I left the doctor’s office completely distraught about the upheaval about to come in my life, it helped that I would soon be in the care of a surgeon who would help guide us through the next terrifying steps.
Seeing a specialist
My husband went with me to all these appointments and we next met with Dr. G., an orthopaedic surgeon specializing in hip and knee replacements. After an exam and looking at my scans, he affirmed the diagnosis, but wanted to confirm the infection by drawing fluid from my knee and culturing the bacteria. Not only would this verify the infection, but it would help my future treatment to know the exact strain of bug infecting my knee.
The idea of someone sticking a long needle into my knee to drain fluid sounded horrific (wouldn’t wish it on my worst enemy), but I agreed if it might help determine the exact nature of my illness. However, this painful experience yielded inconclusive results. In the end, we had to make due with the information available and proceed cautiously with the most aggressive treatment for a very serious illness.
Surgery to remove the knee prosthesis and treat the infection
Dr. G. said I needed surgery as soon as possible to remove the knee prosthesis and treat the infection so that it would not spread and further threaten my health. As it was, I already was having great difficulty standing, walking and making it through the day, while fighting pain and exhaustion. We scheduled the surgery for early November and I only had a couple weeks to make arrangements with my work and complete pre-surgical tests and preparations. Although I wanted the treatment as soon as possible, it was stressful to get everything ready while in dread of what was to come.
My journey was just beginning—I would have my knee removed and replaced with a temporary piece called a spacer (basically a cement block infused with strong antibiotics), six weeks of IV antibiotics, more tests and eventually another surgery to have a new knee replacement followed by months of physical therapy and recovery. In many ways my life would go on hold and instead I had to prioritize my fight for health above everything else.
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