When I heard the sci-fi whirring and whirring of an MRI scanner, the familiarity of the experience flashed through my mind. As a neurologist, I’ve heard my patients experience everything from the loud noises to the claustrophobic abyss of MRI scans, and seen their anxiety over the results.
Although I have had an MRI before, this time felt different because of the closeness of my neurological awareness and the proximity of having this scan done in my own hospital facility.
The next day, when the phone rang and my otolaryngologist said, “You have an acoustic neuroma,” I was surprisingly relieved. Since my aunt, grandmother, and great-aunt could all die of glioblastoma, I cautiously feared malignant brain tumors and expected to hear those fateful words someday. In fact, what I was thinking was that if it wasn’t glioblastoma, I would have easily accepted a different diagnosis.
After the diagnosis, my whiteboard was buzzing with pro/con lists. I discarded my experience with other patients and finally decided to have surgery. At the same time, an abyss opened up in my doctor-patient body – how would I cope with brain tumor surgery, and in the process maintain resilience and set a good example for my patients?
On a clear day in October, I walked into the hospital, ready for a 7.5-hour operation, knowing I would lose hearing on my right side, careful to preserve facial function, but more than anything, eager to remove the tumor. I was relieved to wake up and find that almost all of my facial function was intact: I will always cherish my smile. I heard the typical post-op gurgling noise and threw up four times immediately after the first IV dose of steroids. In the hundreds of patients I have prescribed dexamethasone for, I have never heard of anyone vomiting despite this known side effect.
Unfortunately, these were not the last of the post-operative complications. I started leaking saline cerebrospinal fluid from my nose and throat, and spent 12 days in the hospital to treat this problem. During my neurology residency, one of my fellows often said that complex hospitalized patients should go on “all the rides.” The same can be said about me, playing a patient in a hospital drama, I was often at the bedside. Although these days in bed were not pleasant, this trip awakened my inner doctor, allowing me to diagnose each new setback and create a plan of action.
After spending 12 days in the hospital and losing 11 kilos during that time, I realized how weak it can be after being in bed for so long – and for so many days with nausea and no sleep. I am inundated with requests from my patients to see their physical therapist more than twice a week. I also longed for better nutrition in bed. For the first time in my medical career, I truly understood that patients measured their care in terms of predictable simplicity, not in terms of recordable procedures and medical decisions.
Every afternoon I picked out the next days meals, timed my teams morning rounds within a 5 minute window, and at 11pm I was woken up by the nurse to look at the clock to take my evening vitals. Even more, I developed my experience in the context of my patients, sitting in front of them in the clinic, the “ah ha” bell ringing daily with newly recognized truths.
On a blindingly sunny November day, I was released with my head precariously wrapped around the back seat and the hope of going home tireless. After establishing my new routine, all I could think about was getting back to my lab and clinic, taking my diagnosis out of the limelight and letting this journey fade into the background noise. What I didn’t anticipate in the days and weeks following my surgery was how much this experience would inform my practice. As a junior college student, I am constantly talking about brain tumor diagnoses or sitting in front of my patients because they want me to go home while helping them fight their cancer.
Gradually, I began to see the hospital environment from a doctor-patient perspective, away from the daily noise of the wards, and began to magnify the changes this visit had made in my professional encounters.
Recently, the patient was afraid of surgery for a brain tumor. Without wasting a moment, I said: “I have undergone the same operation, here I am in front of you, doing well.” I felt a sigh of relief from my patient, as our therapeutic alliance seemed to become a family bond.
I started thinking about when I would share the details of my trip and when I wouldn’t. For example, I understand that my diagnosis of a malignant brain tumor may pale in comparison to the incurable malignancies growing in the brains of many of my patients. Worse, my surgical healing may conflict with their experience and negatively affect the empathic therapeutic bond. Likewise, I’m careful not to make my patients focus on me: My office visits aren’t about solving their problems, I’m not about forcing them into the role of provider to facilitate my own recovery.
Even when I don’t share my experiences, I find that patients’ stories can be very motivating. A patient recently told me that after returning home from brain tumor surgery, he passed out in the bathroom after taking his first shower. He said the heat and running water were too much for him. I felt an immediate resonance when I heard his story. I awkwardly stepped into the shower for the first time since surgery, grabbing a curtain rod and towel bar to get in and feeling like a clumsy skeleton as the warm water gushed over my body. The feeling was a little allodynic, but also refreshing, like the water was washing away the damage of nearly two weeks in the hospital.
Through these experiences, I learned that sharing my story is not without its risks—oversharing, my vulnerabilities, and even triggering encounters for myself and my patients. I would even bury the alien if these triggering experiences were caused by my own medical record. But after a difficult diagnosis, tiptoeing into an MRI machine, and a brain tumor, I know in advance that protecting myself from my patients will backfire, turn on the therapeutic “ignition.” The personal stories I heard from doctors and friends about living with single-sided deafness or coping strategies for vertigo fueled my recovery engine.
Although I don’t have an exact algorithm to share from my experience as a neuro-oncology patient, I often rely on my patients’ instructions. Some patients fear surgery and don’t understand how they will feel or look in the weeks following surgery. Some patients may worry about postoperative pain or wonder what it would be like to lose hearing on one side. In these cases, my experience helps them prepare for surgery and relieves them of the anxiety of proceeding with major surgery. I know how hard it is to learn – recovering from brain tumor resection and tumor resection and getting back to life is difficult, but possible. I talk about the problems faced with single-sided deafness, or how to restore balance, or how to eat as well as possible in the hospital. I emphasize the tremendous benefits of physical therapy in my return to work and life.
So far, I have shared my experience with about half a dozen patients who are worried about brain tumors or post-surgery recovery. I used my experience not to convince patients of my clinical recommendations, but to illuminate a possible path to recovery. In all of these situations, I feel that this sharing helps, rather than hurts, the relationship with my patients.
While not all doctors care about their patients’ journeys, we all bring our personal lives to our patients – whether we admit it or not. What I find most helpful when looking through the lens of this past year is that thoughtful sharing helps us humanize our patients in their eyes. Our patients come to us not only for our professional opinion, but often for our personal opinion on proper care. Sharing a direct medical experience as a patient or loved one is real to them, validating these thoughts and comforting our patients during isolated times of decision making.
As a physician, this process has taught me that our experiences can be relatable to our patients and that appropriate sharing is a powerful means to better connect with our patients. After being strapped to a metal mask on top of an MRI rig before surgery and waking up with a C-shaped suture hidden behind my ear after surgery, I consider this experience to be perhaps the most useful tool I can bring to my clinic.
Dr. Evan Noch is an assistant professor of neurology in the Department of Neuro-Oncology at Weill Cornell Medicine-New York-Presbyterian Hospital. Dr. Noh was an M.D. and Ph.D. Weil completed a degree from Temple University and a neuro-oncology fellowship at Memorial Sloan Kettering Cancer Center before completing a neurology residency at Cornell Medicine. In addition to his clinical research, he conducts basic and translational research on the metabolism of brain malignancies and leads a company that develops mobile technologies for the clinical detection of stroke.
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