I'm A Neurologist, Hear Me Roar

By Ilene S. Ruhoy, MD, PhD

As I sit with a wired mask across my face and bolted to the cold steel table beneath me, watching the arm of the CyberKnife System robotically move around my head delivering beams of radiation, I try hard not to move. I try hard to make myself focus on something other than my anxiety, my fear, and my anger. My anxiety over my future of playing whack-a-mole with these tumors. My fear surrounding the delayed and terrifying effects of repeated, albeit focal, radiation therapy and repeated craniotomies. And my anger because if only someone had listened to me, or if only I had stood my ground, perhaps I would not be here today.

I spent some of 2014 and much of 2015 trying to convince doctors that I knew something was wrong. I wasn't feeling well, and it was getting worse. My body wasn't behaving as it used to and my energy was sapped. But my neurological examination was normal, and I did not have any "objective" event -- such as a seizure or a syncopal episode -- for the neurologists I was seeing to take anything seriously. I had a history of migraines (albeit one to two times per year) so my headache complaint, despite the increase in frequency, was attributed to that. I asked for an MRI but was told I was "working too hard," "knew too much," and was "anxious."

I got a second opinion from an ENT who also didn't think an MRI was indicated. Instead, they conducted a CT scan of my sinuses, decided it was a chronic sinus infection (even though I had no sinus history or symptoms), and prescribed me antibiotics. The drugs just made me sicker. I discontinued the antibiotics and cried to an internist who promptly ordered an MRI.

After the MRI, I was told to go directly to the emergency department (ED) -- do not pass go. My husband met me there, the ED physician called neurosurgery, and the neurosurgeon came down to discuss the urgent surgery now planned to resect the 7 cm tumor in my left frontal lobe that had significant edema resulting in a midline shift and threatening uncal herniation. On exam done in the ED, the only deficit was papilledema and it occurred to me that none of the doctors I had seen had looked me in the eyes.

As I lay here in 2022 -- years after my initial diagnosis, brain surgery, and recurrence and radiation in December 2017 -- now undergoing a second round of radiation treatments for yet another recurrence of the tumors, I think, how is it that I -- a neurologist – was somehow not believed or taken seriously? And if I – a neurologist – had this experience, what chance do non-physicians have when trying to seek care? And I am not the only physician with this story -- I have since spoken to many who have had similar disappointing experiences with the healthcare system.

When did we stop listening to and believing the patient?

Care starts with listening and then trusting what the patient is trying to tell you. Their words and their phrases may not fit exactly into the paradigms and algorithms that have come to define most of medicine, but this does not make their words any less important. I learned this while practicing pediatric neurology, as kids have limited vocabulary when it comes to describing how they are feeling. But this applies to adults as well -- most adults have not read the medical books and their descriptive terms may be culturally or socially different. Patients need time to tell their stories in the way they need to tell them. It does not help them communicate to their doctor if interrupted and peppered with questions, most of which are phrased to be answered in only a "yes" or "no" fashion. This is neither satisfying to the patient nor does it provide potentially crucial information for the doctor to determine appropriate next steps.

In some cases, when the doctor isn't really listening and a physical cause isn't clear, they may assume the issue must not be "real," but rather that it is likely to be psychological. The diagnosis of a functional disorder, a conversion disorder, or a psychosomatic illness should never be made in the first visit. Even if an exam suggests it. One thing I have seen in practice is that patients become so used to not being believed that they feign, though not necessarily intentionally, certain symptoms on exam in hopes of trying to convince a doctor something is really, truly wrong.

When a doctor has the time to allow the patient to unravel and relay their symptoms, concerns, and fears, the patient-doctor connection cannot be denied. Just the very belief that a doctor has listened and has validated that, yes, something is worth investigating, provides a sense of relief and decreased anxiety for the patient.

An invaluable lesson to me from my ordeal is that many diseases do not present in what we consider a typical or "textbook" fashion. Most diseases as written in the textbook will say things such as, "70% of patients with this disorder have symptom A," which implies that 30% don't have symptom A -- yet we often forget that 30%. They present "atypically." They may be the outliers, but they suffer just the same and deserve the same validation and care as those who present in a "typical" manner.

There needs to be a restructuring of the healthcare system that allows doctors more time with their patients, so they have the luxury to listen, observe, and ponder. Patients deserve it. We can no longer reflexively decide what is real and what is not based on the initial interaction. The environment is getting dirtier, and the nation is getting sicker and we need to step back, remember why we went into medicine, and find our way back into the hearts, minds, and bodies of patients.

Ilene S. Ruhoy, MD, PhD,opens in a new tab or window is a neurologist and medical director for the EDS/Chiari Center at Mount Sinai South Nassau in New York, and is also in private practice in Seattle.

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