Posted on January 31, 2017 at 9:42 AM
By Robert Frysztak
Many stories have been written by physicians describing their personal experiences as a patient. But I cannot recall reading a similar perspective from a research scientist or medical educator, one who has intimate knowledge of anatomy and physiology paralleling or exceeding that of most physicians. I would like to share with you my personal story of my recent encounter with the medical community.
I was diagnosed 18 months ago with a medical condition that, initially, was thought to be relatively common. My family physician referred me to a specialist that started me on the standard conservative approach of a prescription medication. After 6 months of trying the various medications available with no sign of improvement, the scientist in me began asking questions. I wondered how long a normal patient would continue to follow along with their doctor’s recommendations if they were not having success. I explored all the medical research I could find on my condition. I reached out to colleagues here at the medical school, and even spoke to students and residents who were working with other doctors in the field. At this point, I decided to change doctors. My new physician really listened to me, looked at my research, and together we decided to try a new treatment regimen. This type of collaboration is probably rare, with most patients accepting both the doctor’s diagnosis and treatment plan without question…
Unfortunately, the new approach was still ineffective, and surgery was the next step. At this point I was struck by thoughts of the anxiety that likely went through patients’ minds when confronted by something as ominous as having to have surgery. How frightening it must be for most others to have to trust someone so completely. I was comfortable researching the procedure and asked very specific anatomical and physiological questions that most patients would probably never ask. I had chosen my doctor based on his training and credentials. I had thoroughly read his CV. I even read some of the papers he wrote related to my specific condition. I had chosen one of the best physicians I could based upon an enormous number of criteria. Most patients don’t choose their doctor.
Then the curveball came. The initial diagnosis that we had been working from was completely wrong. The doctor explained what he had found during the surgery, and immediately conceded that he was no longer the best person for the next course of treatment. He referred me to two surgeons who were pioneers in the field. I was back to square one. Once again, I set out doing my research on both the surgeons and the complicated procedure I was to undergo. I talked with other doctors; I read their CVs; I read their research papers, and even rated the hospitals where they practiced. I read several surgical papers about the actual surgery and its complications. After all of this, I began to wish that I was naïve to what was about to happen. Perhaps NOT knowing what to expect would have made this easier.
A thousand questions raced through my mind the night before the surgery, and I got very little sleep. I kept wondering if it would have been better for me to be ignorant of what lie ahead. While I trusted the surgeon completely, I knew that anatomy can sometimes be fickle. How many times had I pointed out all the anomalies on a cadaver to medical students? Arteries that were out of place; nerves that came off from an anomalous branch. What would be the surgical approach? The questions just kept popping up and left unanswered. The next day, as the doctor came in for his pre-op visit, I tried to ask all the questions I still had. He assured me (and my wife) that he was ready for every contingency, and there would be no curveballs this time. I finally relented and let my mind focus on my loving wife holding my hand, and wondering what she was thinking about instead. How hard it would be for her to have to sit, wide awake, wondering and waiting for someone to tell her I was fine.
Following the surgery, I again peppered both the doctor and his surgical residents with more questions. This time, however, they were just to fill in the gaps about my specific anatomy. The only real question that remained concerned my recovery. How long would it be before I knew the surgery was a success? As is often the case for physicians (Anatomy Ph.D.’s are no better), we seem to decide for ourselves how good the rehab is going and tend to shorten the recovery time by a factor of 2. The doctor was very clear as to my recovery parameters and, for once in my life, I decided not to question them. A vigilant wife who reads the discharge orders tends to help in this regard.
While my story had a happy ending, I often wonder how differently I would have approached this had I not had my training and background. I also think about how difficult it must be, for both patient and physician, when they don’t “speak the same vocabulary.” Would my outcome have been different if I had not viewed my condition and my choices “from the inside?”
Robert Frysztak, PhD is an associate professor in the department of medical education at the Loyola University Chicago Stritch School of Medicine. He is the assistant course director of the structure of the human body course.