On Becoming a Trigeminal Neuralgia Surgeon

When I chose to do a residency in neurosurgery, it had a well-deserved reputation for being a brutally intense experience. In a class of one hundred medical student graduates, on average, only one would even apply. When I started my training, computed tomography (CT) scans were just coming into the world of medicine; few were available. Magnetic resonance imaging (MRI) scans did not exist. There were no physician assistants to share in the workload. Every other night, hospital calls were routine. Fellowship programs and sub-specialties did not exist in the field, so neurosurgeons were expected to be experts in all areas — pediatrics, spine, peripheral nerve, brain and spinal tumors, vascular and pain surgery. The rigor continued for six years, each year bringing more responsibility.

The resident selected to follow me in my training program developed a bleeding ulcer during his first neurosurgery rotation. He resigned. His replacement decided to become a pathologist. He resigned. The next resident selected was a woman — there were only a handful of courageous women in neurosurgery then. Neurosurgeons modeled themselves after the father of the field, Dr. Harvey Cushing, who was a brutal taskmaster and had never trained a woman. The highly competent woman resigned after her first year.

We had only cerebral angiography to guide us in the decision-making process of whether a blood clot, brain tumor, or aneurysm was present. We did our own cerebral angiography for emergencies, and on the south side of Chicago, there were many. We did not depend on the few neuroradiologists available to interpret them. The process of identifying lesions deep in the brain, and the ultimate decision to operate, was dependent on your ability to interpolate the location and nature of the lesion without absolute confirmation by any means.

One cannot truly comprehend the self-confidence necessary to be able to triangulate the location of a hidden tumor that may not actually be one, and to penetrate inches of functional brain to reach it. There is no terror in life that can match that experience. Are you on the correct side; the correct lobe? Are you avoiding injury to vital areas of the brain that control speech, movement, and sensation? Are you ready to face the reality that there is often a destiny beyond your ability to determine?

At the end of the years of intense training, the next hurdle was a three-hour oral board examination in which case stories, chosen by the examiners, were presented for evaluation. You were expected to solve the conundrums of the brief history delivered, request the proper imaging studies, interpret them when they were offered to you, then describe the surgery required or not required. Examiners acted as blank walls while listening, gave no feedback, then graded you on your responses. Failures occurred and applicants had to wait another year to reapply. Passing allowed you to become a member of the national society, of which there were then only a few thousand.

The brutality of the training has been criticized, and since eliminated, but I imagine an equivalent experience would be that of preparing your mind for the battles of war. People die from your mistakes and misjudgments. The development of advanced imaging techniques in medicine has changed the need for all that, and the experience of neurosurgical training has changed with it.

The department chair and program director of my residency program in neurosurgery at The University of Chicago, Sean Mullan, was a creative genius years ahead of his time, much like another of my mentors, Peter Jannetta.

Sean Mullan believed that much that could be done by major open surgery could instead be done with the much simpler insertion of a needle. Most great men are known for a single innovation — Sean Mullan devised three over the course of his career. His first involved the injury to pain fibers in the cervical spinal cord with a radiation bead, inserted by a needle, instead of by open surgery. For patients enfeebled by hemibody pain from lung cancer, this was a godsend.

The last of his conceptions came decades later out of his ongoing interest in pain neurosurgery.

That’s where I came in.

The operating microscope had been used in neurosurgery for only several years. Few neurosurgeons had been trained to use it. As I began my final clinical year of training, I insisted that Dr. Mullan send me to attend a course in Gainesville directed by Dr. Al Rhoton on the techniques of doing surgery under the microscope. Dr. Rhoton was the next link in my connection to trigeminal neuralgia (TN) surgery.

During a break in the course, in the dense heat of July in Florida, I was in the hotel pool. A young boy was there by himself (I thought). I worried about that, entertained him, played games with him, and watched after him. I did not realize that Dr. Tom Milhorat was watching me (and the boy, his son) the whole time. When he stepped out of the pool, Dr. Milhorat thanked me for looking out for his son and explained that he, too, was taking the course. It was in preparation for starting a neurosurgery program in Brooklyn, New York. He was already a renowned pediatric neurosurgeon, and my interest then was in treating children.

This would turn out to be a rather unusual job interview.

It was during the ensuing year that Dr. Mullan conceived of the technique of percutaneous balloon compression for trigeminal neuralgia. With a needle inserted through the cheek and a balloon catheter, he could squeeze the trigeminal nerve and ganglion just enough to stop the pain of TN. By doing this he transformed a many-hour operation being done by open craniotomy to one done using minimal access.

I had a year of research yet to finish. One option was to do the research at another program.

Dr. Peter Jannetta was one of the few program directors advertising a fellowship program, so I wrote to him about it. In the frigid, grey Chicago days of February, there was an intense ten-day, twelve-hour- a-day review course required for neurosurgery residents preparing for their written examination. Dr. Jannetta came to the city to deliver one of the lectures.

On a typically chilly Saturday afternoon, he knocked on the door of my apartment in the south side of Chicago, hoping to recruit me. I was not home. I was 10 miles away, downtown, at the course. My wife was home, however, because she was pregnant, and the doctors were limiting her activity. Dr. Jannetta spent several hours warmly recruiting my wife to convince me to join him in Pittsburgh.

Another unusual way to offer one a job. I turned him down.

Instead, I went with Dr. Milhorat, who had offered me a position as chief of neurosurgery at King’s County Hospital in Brooklyn. The pay was better. The work was harder. My wife was from New York. I knew I needed the experience.

King’s County Hospital served a population of 10 million people. Working there was the equivalent of being in a wartime MASH unit. During my training, I learned how to think about performing surgery. In Brooklyn, I did it — day after day, night after night. I became a surgeon, albeit an exhausted one.

Within a year, I left to return to the Midwest.

In Ohio, I was able to focus on treating children, which is what I wanted to do. I ran a busy spina bifida clinic, treating children born with devastating spinal deformities, and others with terrible brain tumors. Some of these tumors were deep in the brain in a central switching station for brain function called the thalamus. I sent such patients to Dr. Ben Carson at Johns Hopkins University who had a well-deserved reputation in the field for operating in this dangerous area. This was the next link in my TN career.


A quarter of a century later, our careers would collide for a different reason.

The neurosurgery oral board examinations were taken only after several years of practice. I was now just outside of Ann Arbor, Michigan. To prepare myself, I regularly attended Wednesday evening neurosurgery conferences at The University of Michigan. I sought out the chair of the department, Dr. Julian Hoff, to help in my preparation for it. He would be another important link. I also sought out the chair of another program in Cincinnati, Dr. John Tew. I brought patients with difficult lesions of the skull base adjacent to the trigeminal nerve to him to operate on. This was his expertise.

Dr. Tew and Dr. Rhoton were appointed by Dr. Janetta as advisory board members of a new organization called the Trigeminal Neuralgia Association (TNA) founded by Claire Patterson, who was living with facial pain and looking for resources and support. Dr. Tew was also an expert in the technique and teaching of radiofrequency (RF) rhizotomy for TN. Dr. Rhoton was renowned as an expert on the anatomy of the trigeminal nerve.

After a presentation by Dr. Jannetta at a national conference, I approached him and inquired why he had never mentioned balloon compression as an option to treat TN. He answered me with classic Jannetta speak:

“I am not familiar with the procedure, but I look forward to reading about your results from it when you publish them in the journal.”

In other words, put your results up for analysis, and he would seriously consider them and the procedure. That’s what he did with his own work.

I noticed something unusual when doing the balloon operation. When I squeezed the trigeminal nerve root, the heart rate would slow, sometimes dramatically, and along with that, the blood pressure would temporarily drop. I sent an abstract of my research findings regarding bradycardia and hypotension during balloon compression for TN to the national meeting of the American Association of Neurological Surgeons. It was accepted for an oral presentation on the opening morning of the meeting, when 500 neurosurgeons would be in the audience and the most important papers of the year would be heard.

This was going to be the first presentation of my own work. What I had to say directly contradicted the standard teaching about what happens during injury to the trigeminal nerve. When the technique of radiofrequency rhizotomy heats the nerve, the blood pressure and the heart rate shoot up, sometimes enough to cause a brain hemorrhage. RF rhizotomy then was the most common way of treating TN, even more than MVD.

Oral presentations were scheduled for 7 minutes. Three minutes were reserved for questions from the audience.

I was petrified of the potential questions.

I put a fix in.

Ahead of the presentation, I asked Dr. Mullan if he would pose a question. I approached the session moderator before it started and asked him to call on Dr. Mullan when I finished talking and there was a call for questions. Dr. Mullan did one better. When called upon, he spoke for three minutes about his experience with the operation and never asked a question. I got off the podium unscathed, published my paper six months later, and then another with my results.

Next, I put together a research laboratory team at my medical school, now called Toledo University School of Medicine. With a PhD neuroscientist and anatomists to help me, we set out to investigate balloon compression — How did it work? Why did it work? What were the neural pathways that led to the drop in heart rate upon compression?

It was tedious work. I published it seven years after beginning my practice.

What was so curious about my findings?

Through electron microscopy imaging of the trigeminal nerve and ganglion in an animal model of balloon compression, I learned that the operation selectively preserved pain fibers and only injured what are described as large-myelinated fibers. These are fibers in the nerve that transmit sensations of light touch. The operation works by injuring the myelin fibers, which act as insulation. This reduces the electrical input to the short circuit in the trigeminal nerve at the site of Dr. Jannetta’s vascular compression that leads to the severe electrical shocks of TN. This input comes from just the lightest touch to one’s face. Everyone with TN knows to avoid anyone touching their face! That is why.

One very important consequence of that discovery was that balloon compression is safer to do on patients with stabbing pain in the eye, because the fibers that deal with the eye’s ability to blink when touched are preserved. Curiously, these are the fibers known to transmit pain. They are preserved! The eye must be protected. Sensations that trigger blinking must be preserved, otherwise the cornea can be injured, and vision lost.

I sought to present my findings in the Pain Section of the national organization. Its leadership wasn’t responding. Dr. Hoff, now president of the national association, was able to get their attention for me.

I became chair of the neurosurgery department in Toledo, but I had cases that needed expertise I felt I did not have. I sent some of those patients to Cincinnati and joined Dr. John Tew and Dr. Harry van Loveren while they performed the surgery.

Now that my research on balloon compression was becoming known, Dr. Jannetta invited me to join him, Dr. Tew, and Dr. Rhoton with Dr. Casey to participate in the first national meeting of the Trigeminal Neuralgia Association. My purpose was to describe balloon compression to support group leaders from around the country. In the first national meetings, there were no other patients present.

Based on my promising results and dedication to research on the subject, Dr. Jannetta appointed me to the Medical Advisory Board. This was a quarter of a century ago.

Due to my involvement with TNA, I began to treat patients from around the country. Many of them had the more difficult dilemma of constant burning pain associated with numbness in the face, often from injury due to surgery on the nerve. These patients did not typically respond to repeat MVD surgery. Balloon compression and RF rhizotomy would only worsen the injury to the nerve.

While dealing with a particularly difficult-totreat patient, one with constant burning pain, not stabbing pain, I read about a procedure called motor cortex stimulation. It was being done in Paris by a neurosurgeon, Yves Keravel. I then had a fellow working with me who had trained with Dr. Keravel. He encouraged me to contact him about the operation. We developed an ongoing relationship along with other neurosurgeons doing that surgery and exchanged the knowledge we gleaned from doing it. I reviewed my results and presented them in conferences and papers.

I participated in TNA national conferences and soon organized them. I realized that a large number of the attendees looking for help were individuals who suffered from this constant, burning pain; these patients had what is called neuropathic facial pain, not trigeminal neuralgia. I promoted enlarging the focus of TNA to acknowledge this large group of patients. The new chair of the board, Roger Levy, agreed with me. There was a vote in favor, and this vastly expanded the reach of an organization limited to the “orphan” disease, trigeminal neuralgia. TNA became “The Facial Pain Association.”

I moved back to New York and joined a small private group with opportunities to grow. We ultimately built it to include 16 neurosurgeons, covering all of Long Island.

Dr. Jannetta stepped away from chairing the MAB, and, with his and Dr. Tew’s support, I was elected chair. My personal goal was to convince the neurosurgical community, who treated trigeminal neuralgia, that TN was just one manifestation of a form of neuropathic facial pain derived from injury to the trigeminal nerve. It could present as the intermittent stabs that have been described for hundreds of years; it could present as a mixture of stabs and constant, burning pain; or it could consist of a predominance of constant burning pain. This is still an ongoing discussion.

The final link in my career occurred when Dr. Ben Carson began referring patients whom he believed he could not help. Like me, he had moved away from a primary focus on pediatric surgery and now had the largest practice of trigeminal neuralgia patients in the country. If he had a difficult patient whom he could not help, or who did not improve with his two-pronged approach of combining glycerol and RF rhizotomy, or MVD alone, he asked me to see these patients. I realized that I could help. We developed an ongoing relationship until his retirement and entrance into the political fray. My relationship with his immediate successor, Dr. Michael Lim, who has since moved to the distinguished helm of the neurosurgery department at Stanford University, continued as we tried to solve the conundrums of the patients who did not get better.

These are the challenges of the next generation of neurosurgeons and neurologists.

As MAB chair, and with the support of the new Board chair, Jeff Bodington, regional meetings were developed across the country to supplant biannual “national” meetings. The FPA began to use the internet to broadcast webinars in which I interviewed other neurosurgeons and neurologists about their approach to the care of TN. These were placed on our website as resources.

After COVID, we morphed our national meeting to the next step beyond individual webinars and held a completely virtual conference. By this means, we moved from reaching half a hundred to more than 500 viewers from across the world in one or two days of lectures, and countless others by placing the lectures on the web afterwards.

After two terms as chair of the MAB, Dr. Ray Sekula, now at Columbia University in New York and a remarkable protégé of Dr. Jannetta, has succeeded me as the MAB chair of an organization now named simply “The Facial Pain Association.”

I completed 45 years of practice, finished my last MVD, and retired from the active practice of neurosurgery in October of this year. I retain a teaching position at NYU Long Island School of Medicine, but no longer treat patients.

It has been a good run. As I wrote in my note to my patients, I wish to thank each of you for granting me the great privilege of caring for you.
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