In medicine, we often hear about the ‘Zebras,’ which refer to rare disorders that we may never encounter in our careers as physicians, and many are only tested during our board exams. Growing up in medicine, I often heard “Learn it for the exam and you may never see it again,” and as I started residency, my attendings would state “common things are common.” We will steer away from the convoluted hypothesis that could be a rare autoimmune disorder (that, in all honesty, we did not fully understand) to the primary diagnosis, which was often a cardiovascular disorder or infection.
I developed an interest in rare diseases due to the academic stimulation of learning something new, which prompted me to study young lung cancer, a rare condition back in 2018, but now a more common phenomenon.
2021 was a year marked by significant changes for me: a divorce and a new job. The time came to bid farewell to my dear patients and colleagues from the University of Wisconsin and return to the northeast. Things were in motion, and I was leaving.
Right before my last day of clinic, my left arm was mildly swollen and red, which I attributed to a scratch from my newly adopted cat. I made an appointment with my primary care doctor, and almost immediately after starting the visit, I presented my hypothesis of a “cat scratch infection.” My doctor agreed, and I was prescribed antibiotics. That same day, I went back to my endless to-do list, but I couldn’t sleep, and I was uncomfortable. However, I attributed it to the move. I went to my last day of clinic with an even more swollen arm. Patients asked, and I continued to tell the story about the cat scratch.
At the end of my last clinic day, my nurse, Aimee, despite my refusal, grabbed me by the good arm and walked me to the ED. A medical student entered my room; I immediately saw it on his face that he recognized me. He had been in my classroom a few days before. He asked, “Dr. Duma?” and I said, “Yes, I am stepping up my teaching game here with real-life scenarios.” We both laughed. The resident examined me and agreed with the diagnosis I had already mentioned. Minutes later, a wise attending physician looked at my arm. “Let’s get an ultrasound to be sure, but you will need IV antibiotics”.
In a dark room, I saw the ultrasound technician’s face change. I asked what was happening, and she said that it needed to be reviewed by the radiologist. They wheeled me down to the ED, and I noticed that my room was full of doctors, many with gray hair. I immediately knew this was big, and something was very, very, wrong.
The chief of vascular surgery was there and told me that I had a 32 cm clot in my left arm, with increasing pressure and risk for compartment syndrome. I was rushed for a thrombectomy, a sheath was introduced, TPA and heparin were started, and I was transferred to the intensive care unit. My clot was stubborn (like me), and some futuristic tool, “ClotTriever,” was called to the rescue for a second intervention. Opioids were awful, but the lesser of the two evils between pain and dry heaving.
The diagnosis was thoracic outlet syndrome, and at that moment, I became a Zebra. The doctors mentioned how few of these cases they had seen and were shocked by the vascular and nerve damage I had from my new friend, thoracic outlet syndrome.
Despite being a physician and faculty member at the university where I was getting care, I was called “sweetheart” and “honey” and talked down to by the senior surgeon on multiple occasions, despite asking them to address me by my name. In one instance, I was told, “You are very anxious,” when I asked for the surgery time. A few hours later, I noticed that the word ‘anxious’ had been added to my chart. I felt powerless and stereotyped by people who did not know me. It did not matter that I was a physician, faculty, and trained hematologist (hence, I had a clot). I saw firsthand how women are treated by our health care system, gaslighted and ignored, and labeled as anxious if we made someone accountable or asked questions. We all have the right to ask questions about our health, particularly when we are critically ill. But as a woman, I felt my voice was not always heard. The clot was removed, and I was later discharged with compression stockings and oral anticoagulation. As a parting comment, the senior surgeon said, “You should smile more, dear.” On the same date, I sent an email to the chief of vascular surgery about my experience, and to this day, I have not received a response.
Over the following days, I called to schedule follow-up studies and saw how, once again, the word “anxious” was copied and pasted, leaving a permanent mark on my chart. Despite calls and messages, my symptoms were attributed to “my anxiety.” One day later, I lost feeling in my arm, and I was back in the ED. It was all a bad combination: gender bias, divorce, belongings on the way to Boston, and a global pandemic keeping my family away.
Desperate, I called one of my mentors. I was afraid without a plan for a rare condition in the middle of my move. My mentor got on the phone, and in a matter of minutes, the best surgeon on thoracic outlet syndrome was calling my cellphone. His words, “Come to Boston and I will take care of what is needed,” it was the first time I felt I would be okay. It also made me reflect on the significant impact that our words have on our patients.
With one functional arm (and the help of close friends), I moved to Boston and met my new surgeon. The plan was for a rib removal in a few weeks, as he wanted me to set up my apartment and create a caregiver plan with my family, as I did not have any family in Boston. Putting the shower curtain up in my new apartment was the most humbling moment, taking breaks because of the pain and numbness. All of this showed me that I was stronger than I ever thought I was.
The surgery happened in August 2021. I experienced real pain for the first time, lost one rib, two of my scalene muscles, gained a chest tube, and saw my father (a surgeon) for the first time bereally worried about my health. The recovery was slow and painful. I have learned to live with days in which I don’t feel my arm and with the scanxiety after each new angiogram.
During the journey, I became a better doctor. I learned firsthand how the healthcare system labels women as anxious almost immediately. How, despite being a physician, I was called “sweetheart,” and my questions were ignored, and my concerns were downplayed.
I am a zebra with thoracic outlet syndrome, and like the overachiever I am, it’s a bilateral issue. My right side may become an issue any time, but for now, we are riding off physical therapy and intentional naivety. I am proud to be a medical zebra because someone needs to be that rare condition that we are asked about on the medical boards.
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