A Neurosurgeon’s Nightmare: Essential Tremor
I never dreamed that I would be forced to stop operating during my career as a neurosurgeon, especially at 49 years of age; however, it happened.
I grew up in Norman, Okla., and until the summer before my senior year in high school, I was going to be an accountant, but my life changed one summer day. Our rock band was practicing Neil Young’s Out of the Blue and Into the Black when I walked up behind our bass player (whom I was friends with since preschool) to remind him about a break in the song. As I leaned in, he reared back and accidentally head butted me in the nose. I saw stars, the blood started pouring and my friends were, of course, laughing. Needless to say my nose was broken, my septum was deviated to the point that I could only breathe through one side of my nose and I needed surgery. I met with an ENT surgeon and was fascinated by his explanation of the surgery itself. I had the surgery that summer, and during enrollment for my senior year, I dropped accounting, enrolled in an anatomy and physiology class, and the rest is history.
I started my freshman year at the University of Oklahoma as a pre-med student and graduated with a Bachelor of Science in Zoology and a Bachelor of Arts in Philosophy. Luckily, by adding a second major, I spent another year in college, and the summer before my super-senior year, I met my future wife. Ironically, and in retrospect, I also remember that’s when my tremors began. At that time, I only seemed to have it while nervous, so I didn’t think much about it.
After graduation, I started medical school at the University of Oklahoma. I remember when I tried to draw blood from one of my classmates for the first time, it was an epic fail due to my hands shaking. Again, it only occurred if I was nervous or anxious. Once I became comfortable in the operating room and doing various other procedures (central lines, suturing), I had no issues with the tremors. During the spring of my third year, I was allowed to take my surgical elective, and I chose neurosurgery, mostly because I had done general surgery and I was not interested in orthopaedics. I knew nothing about neurosurgery and had never seen a craniotomy or a spine operation.
I was assigned to a group of three private practice neurosurgeons and reported to the operating room where the surgeon was getting ready to start a craniotomy for a resection of a large convexity meningioma. The surgeon asked me to scrub in, so I did. As I said, at that time, I knew nothing about neurosurgery, but by looking at her scan, things looked ugly. I assisted him as directed, and I watched him turn the bone flap (which was cool), then open the dura, which was way cool. I then watched him resect the tumor, and all I could think was this poor patient is going to be maimed if they even survive.
After the resection, we closed, and I continued to think about was how doomed this patient was. Shortly after taking the patient out of the head holder, the anesthesiologist extubated her and she immediately began talking — I was hooked.
Blurry Internship and Residency Years
I spent the rest of the month with that group and loved all aspects of neurosurgery. At the advice of one of my professors, who I considered a mentor, I went to Washington University in St. Louis for a month-long rotation at the beginning of my fourth year. That rotation was the best experience I had in medical school. At the recommendation of Ralph G. Dacey, Jr., MD, FAANS, I applied to about 25 residency programs. I was granted about 19 interviews, but stopped after 12 because I knew what I wanted. I remember it like it was yesterday — the day I was paged by medical school administration to tell me that I had matched and would be going to Washington University for my residency.
During a time of no work-hour restrictions, I spent the majority of my time on-call (every other night). I only had one rotation on the neurosurgery service, with the majority of my internship on the cardiothoracic service, where the intern never saw the operating room — but I was too tired to care. I was home so rarely that my wife moved back to Norman to pursue her Master’s degree at the University of Oklahoma. I was so excited to finish my internship and shed the short white coat and white pants that we were required to wear and start operating.
The first three years of residency are somewhat fuzzy in my memory. I do not recall my tremors being an issue; however, one of my attendings noticed it. Every year, we (the residents) would have a one-on-one meeting with Dr. Dacey to review board scores and discuss our future. I was just starting in the research lab and feeling good about things, when Dr. Dacey asked me to see a movement disorder specialist about my tremors. This was the first time anyone had ever mentioned this, and I was scared.
Essential Tremor Diagnosis
I blew off seeing Dr. Perlmutter, the specialist, for about six months because I was in denial. However, in the research lab, I was trying to develop a novel functional tumor model by injecting glioma cells into the whisker barrel cortex of rats and mice, and these surgeries were becoming more and more difficult to do. After I saw Dr. Permutter, however, it was official — I had essential tremor.
I was bummed until I started taking the Primidone that he prescribed, and it helped significantly. I then finished my research, my wife and I had our first child, I was getting ready to be chief resident and I had signed a contract to join the group of neurosurgeons that I worked with as a student. All was going well.
The Primidone continued to work well. I can only recall one time during my chief year that it was a problem. I was clipping an aneurysm with Dr. Dacey, and as I started to deploy the clip, I could feel the clip applicator start to slip in my hand. I froze, knowing my hands were going to start shaking. I feared that if I deployed the clip, I would have avulsed the aneurysm off the parent vessel and probably would have killed the patient. Fortunately, I was able to remove the clip and then watched as Dr. Dacey smoothly and precisely clipped the aneurysm. I knew he could see my hands shaking, but he never said a word to me about it.
Working with Essential Tremor
In July 2000, my family and I moved to Tulsa, Okla., so I could begin my practice. At that time, I was the seventh neurosurgeon in my group, and I got busy very quickly. The Primidone was working well, and I was not having any issues. However, I applied for disability insurance and was denied. I was told I had to be in practice for two years before they would insure me due to my tremors. That triggered our group to take out a group disability policy so I could have some coverage. At the time, I was more concerned about a car wreck or skiing accident than I was my tremor.
After two years in practice, I reapplied for disability, was still taking Primidone, and the insurance company granted my policy. I continued to do well; in fact, I stopped taking the Primidone for a few years as my tremor didn’t bother me. However, that would later change.
In 2002, I was one of the 12 physician owners who opened what was then the Tulsa Spine Hospital. We started out with four operating rooms and 20 inpatient beds as well as radiology and pain management departments. Our group continued to cover ER calls at the non-profit community hospital that declined to partner with us at our spine hospital. Over the next five to six years, the community hospital employed neurosurgeons and swiftly removed our group from the ER call schedule. As my tremor was getting worse, this was a good thing. I decided then that I was done with cranial surgery under the guise that most cranial work comes through the ER — but I knew it was because of my tremor.
I was back on medication, and at one point was on Propranolol, Primidone and Topamax at increasing doses. I could not tolerate the Topamax and stopped it. I continued on the Propranolol and Primidone for some time, but eventually stopped the Primidone, as I couldn’t tell if it was helping at all. My tremor was becoming noticeable in public as well. I developed changes in my behavior, as well as surgical techniques, to adapt to my situation. For example, instead of pointing to a scan on the view box for patients, I would physically touch the scan so they wouldn’t see my hand shake. It had gotten to the point that what used to be my most enjoyable days (OR days) were now my most dreaded. I was scared to death that I was going to have a CSF leak because I knew if I did, I could not fix it.
The Decision to Stop Operating
For the last 15 years, my OR days were on Mondays and Wednesdays and clinic days were on Tuesdays and Thursdays. Late last January, I went to my office for a Tuesday clinic and found that I only had four patients to see. I thought it was slow because patients had not met deductibles, etc. Then, when I came in on Thursday, I only had three patients to see. I asked my nurse to look at my partner’s schedules to see if they were slow — and they were not.
I asked her why she thought it was so slow, and she said she thought it was due to my tremor and informed me that more and more patients were asking her about it, even referring physicians were asking about it. I knew instantly that I needed to stop operating, but what would I tell my wife and kids, as well as my partners?
I got home early that day and told my wife my decision. Without hesitating, she expressed her full support and understanding, and at that moment, I felt an immediate burden being lifted. My daughters were upset, but they understood, and my son, who was six-years-old at the time, had wondered why I “wiggled” so much.
Restructuring a New Career
I then began the task of rebuilding a meaningful career, as well as applying for disability benefits. I had been the concussion doctor at my kids’ school for four years and was interested in this, especially now, because concussions are non-operative.
This past year, I have become a concussion specialist for a Division I university, as well as an unaffiliated neurotrauma consultant for the NFL, in large part thanks to the friends I have made along this journey. I will also be joining the faculty at the University of Oklahoma School of Community Medicine to help develop a comprehensive concussion center.
What I miss the most about operating is not so much the actual surgery (although I certainly do miss that), but the surgery “family.” I miss the interaction with colleagues and staff that I had for 15 years. You don’t realize what an impact that has until it is no longer there. Also, being trained as a surgeon, and not being able to operate anymore, I feel somewhat marginalized at times. However, there are other ways to be involved. For me, one of the most gratifying ways is through various surgical organizations.
The decrease in income has also been an issue for me, and more importantly, for my family. I worry about paying for my kids’ education, and I feel guilty my wife now has to plan our vacations based on how expensive they might be. On the other hand, I do get to spend more time with my family, which means a great deal to me. Although I no longer have the stress of being an active surgeon anymore, it has been replaced with others, such as financial stress and remaining relevant to my community, as well as the neurosurgical community.
In conclusion, the best advice I have to offer is to find good disability insurance, and get as much as you can, because you never know.