After she sprained her right wrist, Emily's elbow hurt her for months. The 27-year-old graduate student could not grip things properly, and her right arm, her dominant arm, was becoming increasingly weak.
She went to an orthopedic surgeon in Miami, who explained that she needed surgery to allow her ulnar nerve to begin to function properly again. After the procedure in December 2014, initially everything looked great.
Several months later, the same elbow began to hurt again, it was painful even to write or type, and the surgical area began to turn a darker color. Plus, her elbow bones were becoming more prominent, as if the muscles around them were shrinking.
The orthopedist diagnosed complex regional pain syndrome, and said there was little she could do.
After moving back to Philadelphia in mid-2015, Emily sought a second opinion from a prominent orthopedic hand specialist.
On top of all her other symptoms, she had so little appetite she had lost about 10 percent of her body weight, and she had been slim to begin with.
The new orthopedist told her that he had little to offer and urged her to get used to the discomfort.
Then, a couple of months later, she developed a painful, red lump at the surgical site. Even the brush of a sweater against her arm was extremely painful.
After a brief exam, yet another orthopedist ordered an MRI, and suggested that the pain and weight loss might be psychological.
A few days after the MRI, the elbow began oozing what looked like pus. Emily called the orthopedist and was told that he was too busy to see her, and that she should go to the nearest emergency room. Emily asked about the MRI, and was told the results were in, but couldn't be given to her over the phone.
A physician's assistant diagnosed her with cellulitis, and prescribed a week of antibiotics. Yet even after several days, yellowish fluid kept draining from her elbow, which remained extremely painful.
At the urging of family and friends, she saw a new orthopedist, who looked at the MRI and immediately scheduled her for surgery.
What was wrong with Emily?
The MRI had shown a collection of fluid next to the ulnar nerve, which required immediate drainage under general anesthesia because Emily was in so much pain. Routine cultures all came back negative for infection, but a special culture that the doctor specifically requested gave the answer several weeks later. A rare organism, a rapidly growing atypical mycobacteria, was causing the damage.
An infectious-disease expert was called in, and he sent more samples to another lab. Weeks later, the final verdict was in: It was mycobacterium chelonae, a rarely seen organism that can cause an abscess or cellulitis in people who have experienced trauma. If untreated, it can be fatal. More common in tropical climates such as Miami, it likely was introduced into her arm when she had her initial surgery by an inadequately sanitized laparoscope, during a cortisone injection at the site, or at some point as she healed from surgery. Emily will never know for sure.
She was prescribed six months of clarithromycin, an oral antibiotic. Within weeks, Emily's arm didn't hurt as much, the surgical site finally closed and stopped draining fluid, the discoloration started to resolve, and the muscle wasting stopped. Her appetite returned, and she started gaining weight. She will have some permanent damage in her arm, likely due to the infection raging for so long, but otherwise she feels and acts like the Emily she was before her injury.
I am a cardiologist, not an expert in orthopedic and infectious issues. But I am writing this because Emily is my daughter. When her original doctors seemed to brush off her symptoms, she called me and I was able to contact colleagues who would take her concerns seriously.
Emily's story does illustrate that it helps to have a doctor in the family. It also shows that patients should not give up if they feel they are being ignored. But how many patients lack the knowledge and resources to get the answers they need? Without the excellent care she eventually received, Emily's happy outcome may have been very different.