Raymond F. Sekula, Jr., MD, MBA is the Director of Minimally Invasive Brain Surgery and a Professor of Neurological Surgery at the Neurological Institute at Columbia University. He also serves as the National Chairman of the FPA Medical Advisory Board, in addition to holding numerous other prestigious positions. With over 100 published papers and studies on neurological conditions, Dr. Sekula has personally and significantly advanced the field of microvascular decompression (MVD) surgery. His unmatched expertise has made him a highly sought-after surgeon for patients living with conditions such as trigeminal neuralgia (TN) and hemifacial spasm (HFS). What truly distinguishes Dr. Sekula, however, is not only his exceptional medical and surgical skill but also his genuine humanity and passion for helping others. As a recent and deeply grateful MVD surgery/HFS patient of Dr. Sekula, I had the distinct privilege of sitting down with him to discuss his journey to become a neurosurgeon as well as his love of and dedication to treating patients suffering from facial pain and discomfort. 

Interview by Danielle Clements, FPA Special Correspondent

As one of the most renowned neurosurgeons and a world-class expert in your field, what have been some of the key highlights of your journey to becoming a neurosurgeon? What specifically drew you to this specialty? 

I met a man when I was in my third year of college who had Parkinson’s disease at a very young age. He was probably 45, so he was early [for a Parkinson’s diagnosis] and he had become so debilitated that he could no longer work but was just trying to be productive. 

He was volunteering at an organization where I was volunteering. He was terribly debilitated from the medications, and he went away to have a relatively experimental surgery at the time called a pallidotomy. That is where the surgeon makes a small lesion one way or another, or interruption of the circuitry in the globus pallidus. When he returned, he made an appearance at the volunteer organization, and then he actually was able to go back to work. 

He had these terrible medication-related dyskinesias where his body would make contorted grimaces and things. And he could not work, not just from the appearance of it, but he just couldn’t use his arms and legs in a functional way. And [after the surgery] he went back to running and playing with his kids and working…it was really miraculous.  

At that time, I was a classics major. I was studying Latin and Greek. I thought that I would probably continue in that and maybe become a classics professor. And after that, I just decided: this is what I wanted to do with my life. And so that’s how I really got interested in medicine. 

When I started in medicine, there was a tremendous push to increase the complement of family practice physicians. In my first year of medical school, everyone in the class was assigned to a family practice doctor. I happened to be assigned to a very bright, really interesting, young doctor. A big guy came in one day with half of his face shaved. He explained that he couldn’t shave the other half because of the pain. 

I took the original intake without the doctor, and I had never heard of trigeminal neuralgia. He explained that the pain was so severe that it brought him to his knees, he’d never felt pain like this. 

He said he felt like he was being electrocuted at different points throughout the day. Obviously, it was heartbreaking, but also captivating. Then, the internist came in and he knew right away what it was, which was a bit unusual in those days. 

But he [the internist] was just very good. He prescribed the best medication at the time. I saw this patient back a few times in the office and learned about his struggles with medication. That caused me to really develop this interest, kind of naively, in trigeminal neuralgia. And as I started to look around, I found out that the world’s surgical expert [in trigeminal neuralgia] was working and teaching in Pittsburgh, and I was about 30 minutes outside of Pittsburgh. So, I just wrote to him and asked if I could spend the summer with him. 

Surprisingly, he wrote right back and said, “Sure, you can come spend the summer with me.” And I did. There, I was exposed to not only cranial neuralgias, but acoustic neuromas and different kinds of skull-based problems. 

But, you know, two of the very big ones were trigeminal neuralgia and hemifacial spasm. That’s when I saw my first patient with hemifacial spasm, and I just started to really get interested in that. I ended up doing my training in Pittsburgh with him, his team and the whole department.  

They don’t have it anymore, but I was given the inaugural Trigeminal Neuralgia Association Fellowship Award. And that’s when I first got involved with what was then the TNA but has become the Facial Pain Association (FPA).  

All through my training, I was intensely interested in cranial neuralgia. I mean, I was interested in everything, but I guess you’d have to say that my greatest passion was in those disorders, and it remains that to this day. I just really enjoy taking care of people with these problems. 

It’s just a big, big part of my life, I guess you’d say.  

You’ve treated so many patients, each with their own distinct symptoms and needs. What do you find to be the most rewarding part of your work?

I’ve taken care of literally thousands of patients, and their conditions are all different. Take trigeminal neuralgia. I think there’s a lack of understanding, a deep, deep understanding in the neurosurgical, neurological specialties and other specialties. And there are many types of trigeminal neuralgia. 

All of these patients suffer a great deal, and they really need somebody who lives and breathes these problems to get them to a proper diagnosis, to not do the wrong surgeries, to know if surgery is even indicated. If they do need surgery, they need someone to perform them really elegantly, to not cause them other problems, and to really think about them as more of a lifelong patient. 

What’s rewarding about that condition is, I guess you’d say kind of obvious: patients are in intractable pain oftentimes by the time you operate – and they wake up with no pain. Some of them go on to live somewhat in fear of that pain coming back. But the majority of them get through it, and that depression lifts, and they get their life back. 

(Gesturing to a bulletin board full of notes and cards on the office wall). That’s probably just the last two or three months of cards from people saying, “you know, this changed my life. I got my life back.” Or, they don’t say it too much, but sometimes they’ll say, “God, I wish I’d done this 10 years ago. I lost 10 years of my life…” Well, obviously, that feels pretty good.  

And it’s not just me. It’s a big team here. It’s my nurse practitioner. It’s my admin who does the patient intake. It’s the nurses in the operating room. It’s a lot to pull the anesthesia people to do it really right. Like today, I was working on this case, and I was just thinking, this is as good of anesthesiologist as I’ve ever worked with. This case could be so much harder if they gave the patient too much fluids. And there’s certain things you can do with anesthesia that really makes it tough. 

I was thinking, once you get a whole process really going and you have people that are interested, and those nurses and anesthesia people, they want to be in those rooms and be part of it. And it’s kind of fun, you know? 

Now with hemifacial spasm, it’s a little different because, again, it’s just my understanding from patients. With hemifacial spasm, there’s the fatigue of it in the face where it just constantly wears on them. I can’t say that I can, in any way, really appreciate that because I don’t have it. I’ve had some twitching in my eyes. So I guess maybe I had 0.001% of it for an hour and have some idea. But then there are all of the social ramifications. 

We published two papers on this. On a scale of 0, which is no disability, and 4, which is completely disabled, hemifacial spasm patients are like a 3.2. And when you fix them, they go down to 0, basically. So it’s extremely gratifying. Because people just say, “I’m back to normal.” 

I still keep in touch with all these people, too, which makes it kind of nice because it’s kind of like having a family practice. I keep in touch with them because I really can’t learn how things are going and how to improve what we’re doing without really following patients over a long, long period of time. I also think it’s kind of nice. I mean, [smiling] it’s just like being a real doctor.  

And it doesn’t take that much effort, and it’s fun. You know, you and I are hopefully going to be talking briefly 10 years from now. 

And they [patients] don’t say it, but it’s almost like they’re saying, “I don’t need you anymore. I’m completely back, I’m good.” This, this is great. 

There is also a part, where you’re [the surgeon] like a seamstress, or artist, or carpenter. There’s a manual part. For example, the case I just came from today. Very unusual. Even though I’ve done so many of those trigeminal cases, some have a very unusual configuration that I had to figure out. 

It really doesn’t get old, at least for me. 

As a patient myself, I can certainly relate to that feeling you’re describing. It’s overwhelming to so suddenly get back to “normal,” overwhelming to suddenly not have the spasms, combined with overwhelming feelings of gratitude. But there is a lot of anxiety dealing with the challenges of HFS and certainly leading up to surgery. What is your general approach to managing patient expectations, especially pre-surgery and recovery?  

I try to lead with what I believe is evidence-based truth, and I have found that patients respond to that. In about my second year of practice, I hired my first research assistant or intern. He was the first [of many assistants], but all that work [assistants and I] did, it changed how we do cases, how we treat patients. We’re constantly changing what we do. So, when patients sit down, we say, “Well, listen, this is the chance,” just like I’m sure we talked to you, “this is the chance that we can fix it.” 

“It’s not 100 percent, but this is actually based on the numbers, and these are the kinds of complications we’ve had. And to the best of our extent, this is what these complications look like if they happened previously.” And we’re not selling anything here, you know. 

“It’s like a nine out of ten chance I can fix this problem,” or “Yes, we can fix this problem. These are what the chances are,” and I think people tend to respond. A lot of people say, “Okay, I’m ready to go.” 

Some people say, “I’m really nervous.” So, sometimes, but we try not to push, they just tend to come back. And we’ll say, “Do you want to talk to someone who’s had this?” We don’t always put them in touch with a superstar success story. We might put them with somebody who had some swallowing trouble when they woke up, and it took a couple of weeks to get better. So, patients feel like we’re not salespeople, because we aren’t.  

Patients are just telling the truth. That’s what I’ve found. 

Absolutely agree. That’s how my husband and I felt leaving my initial consultation with you. We felt no pressure to proceed with surgery, but felt very comfortable knowing the odds it would be successful. It was a lot to consider, but the more we talked about it, I think by the time we got home, it was just a matter of scheduling it and pulling the trigger. 

Yes, I mean, I don’t know what that would be like. I had a son once that had that eye surgery, but that’s not brain surgery. Of course, you could be blinded. We were really scared, you know, but I’ve never had a brain surgery. So, yes, I understand, I’d be scared. 

It must be a huge leap, but it also suggests how profound the problems are. You know, people say, “Yes, I’ll have brain surgery to fix this, because I don’t want this anymore. I can’t take this.”  

The FPA does so much for so many. What is it about the FPA that made you decide to dedicate your time, your expertise, your energy? 

The FPA is a great organization. It’s been around for decades. The first time I went to a meeting, I saw that it is unlike other medical meetings. There are some others now that do this, but the FPA meetings have patients there. Doctors generally don’t go to meetings with patients. That actually makes no sense to me, so I thought that was great. 

The majority of patients [that attend meetings] are either in the new stages of diagnosis, or they’ve had it for a while, and surgeries haven’t worked, or they’re worse because of surgeries, or this and that. …There’s definitely a sense of seriousness when I go there, because there’s a lot of people suffering.  

This particular board has some really great people on it, like attorneys, doctors, serious businesspeople that run companies. The organization is in the best shape I’ve ever seen it in since I joined. And then it’s got a great staff, including the CEO and her team. 

[At their meetings] You get a chance to interact directly with patients, and, you do also really get a chance to push, let’s say, new information or truly evidence-based information out to the patients in a way that they probably wouldn’t get it for many more years if you didn’t do that [at the meeting]. 

Trigeminal Neuralgia is just such a rare condition. Hemifacial spasm, probably 120th as prevalent. So, most physicians just don’t get a chance to be very good at treating it, so these patients are sort of on their own. When Claire Patterson started the organization, her big push, just pre-internet, was to have support groups. Because the idea was, well, all right, as Ms. Smith comes into church complaining of facial pain, well, maybe somebody there says, “oh, I know somebody with that. I can give you their phone number…” And that is, in fact, what did happen: word of mouth.  

I think the internet has helped some. And, you know, it used to be that the annual meeting was huge because there was no internet. So, these people felt like they were, I think, just completely on their own. They didn’t know anyone else so the meeting had lots of purpose. One was just to have a community, and then, of course, to learn more about it, what could be done for you, if anything. But, in the midst of pain, it would be a big party.  

The FPA is marking its 35th anniversary as an organization this year. What would you love to see for the future of the FPA?  

I would love to see that the neurology and dentist educational initiatives are actually successful in getting those subspecialties to take better care of patients with TN, to refer appropriate patients earlier for surgery. And I would like to see that the FPA continues to grow and serve patients with facial pain in new ways, as it’s been doing over the last few decades.  

I hope to see real enthusiasm for the facial pain registry. A lot of people have spent a lot of time on this and it should help us answer some questions. TN patients and HFS patients tend to be like an open book when answering questions about their condition. It should really help us understand who can benefit from what treatments.