Linda Hewitt for years thought she had a simple ear issue until CT and MRI scans made it clear that without skull-base surgery she risked a painful and life-threatening disease.
Linda Hewitt was recovering from a bad cold in December 2011 when she realized she had a fuzzy feeling in the right side of her head and diminished hearing in her right ear. The internist she consulted assumed it was an ear infection—as did she—and prescribed two rounds of antibiotics, which had no effect. The otolaryngologist recommended by a neighbor assured her that the problem was a dysfunctional Eustachian tube and performed an eardrum-slit / fluid-drain / tube-insertion procedure that ended the fuzzy feeling and returned right-ear hearing to normal. When the same symptoms reappeared two-and-half-years later, she assumed the tube had come out.
“The return of the symptoms was irritating—I’m a writer and the fuzzy hearing interfered with the interviews I was conducting for a book. I wasn’t worried about the condition, however, as it had been made clear to me by the original otolaryngologist that the fluid could be drained and the tube replaced as needed. During my next ENT appointment, however, I saw a PA-C who ordered an audiology exam and consulted a different otolaryngologist in the practice, who agreed with him that something else might be going on and that a CT scan was indicated. The scan revealed a small, triangular accumulation in the right middle-ear area. The second otolaryngologist felt the accumulation was either cholesteatoma or cholesterol granuloma. He pointed out that there was an irregularity in a nearby bone and that this made him feel cholesteatoma, a noncancerous but destructively aggressive cyst, was the likelier condition and that it had already begun to damage skull structure. This damage made addressing the issue more necessary, and he said that there were two courses to be considered: surgery to remove the accumulation or ongoing monitoring, with surgery as an option should the condition change.”
When Linda hesitated, a third option was offered: a second opinion. An appointment was made with an otolaryngologist specializing in ENT surgery at a teaching hospital two counties away.
She expected this appointment to be a matter of form, that the second diagnosis would agree with the first. This wasn’t the case. The surgeon read the CT scan and said that the issue was neither cholesteatoma nor cholesterol granuloma but a break in the bone surrounding the Dura through which cerebrospinal fluid (CSF) had leaked, thus causing the accumulation visible on the CT scan. While the condition had evidently existed for some time and so could not be considered an emergency, the issue was one that needed to be addressed. Leaving the situation as it was put Linda at greater risk for meningitis, an inflammation of the protective membranes covering the brain and spinal cord that can cause permanent damage or even death. The surgeon said that whoever performed the necessary operation should be prepared to do skull-base repair.
“I was blindsided. In weeks, I’d gone from having a mechanical ear issue to cholesteatoma to leaking CSF. The accelerating seriousness of the diagnoses seemed to be contradicted by the fact that in the five years since the symptoms appeared they had not changed, that I had none of the other symptoms often associated with leaking CSF, and that I’d never had a head injury or surgery, common causes of leaking CSF. The fact that the two diagnoses were so different made me question whether what I’d heard so far justified making a decision to undergo surgery that could conceivably affect brain function.”
Linda decided to seek a third opinion. Extensive research brought her in May 2016 to UNC Medical Center and Kevin D. Brown, MD, PhD, Chief of Division of Otology/Neurotology, Skull Base Surgery. Dr. Brown read the CT scan, examined Linda, and agreed with the second opinion: the accumulation was CSF that had leaked through the nearby break in the bone surrounding the Dura; skull-base repair was necessary; and the surgery should be scheduled within a reasonable amount of time because of the meningitis risk.
“What was impressive about Dr. Brown was that, without prompting, he addressed my questions regarding the condition and the surgery in clear, comprehensible fashion. He suggested an MRI and arranged for me to have it that same day, which was a huge help because I live hours away. He called the next day, to verify that the MRI confirmed in greater detail the CT scan. To say that his responsiveness increased my confidence level is a huge understatement. It also helped that he’d told me during our initial meeting that he’d be operating as part of a team that included Dr. Matthew Ewend, Chair of the Department of Neurosurgery at UNC, and Dr. Ewend proved equally communicative and supportive.”
After the successful surgery in mid-July, Linda spent a day in ICU and two days in the hospital, during which her mental and physical functions were carefully monitored.
“I passed, and they let me go. I know how much I owe the UNC surgical team and their support staffs. For me, it all came down to their communications skills. Without their obvious expertise and willingness to share what they knew, I don’t think I could have mustered the confidence to undertake what to me at the time seemed a perilous and not immediately critical undertaking. When you feel generally great, with no major symptoms, it’s difficult to accept the potentially catastrophic results of doing nothing. The informative attitudes of everyone at UNC Medical, especially Dr. Brown and Dr. Ewend, not only reinforced my decision to proceed but, afterwards, made me glad that I had.”
The advice that this experience prompts Linda to offer is: “If you have doubts about a diagnosis, look until you find professionals who can give you the confidence you’re doing the right thing. For me, the strong communications culture at UNC made all the difference.”