Trigeminal Neuralgia: Symptoms, Causes, & Treatment

Introduction to the Podcast and Guest

[00:00] Welcome everybody. My name is Brian Heflinger and I'm a board certified neurosurgeon that's been practicing for 25 years outside of residency. I'm here with my son Kevin. How are you doing today, Kevin? Doing good. Okay. So today we thought we'd talk about trigeminal neuralgia. It's something that people ask about all the time on our social

[00:20] social media is in the comments and everything and it's a pretty brutal disease. Is it a disease? It's a condition, but it's a bad condition. There are people who've committed suicide over the pain from this condition, so it's really some of the worst pain. It's thought to be some of the worst pain that you can experience as a human being.

[00:40] We thought we'd do a deep dive in this episode, so forever more in the future we can refer people to. So it's not just like a quick video, give me a quick overview, but we kind of go a little more in depth. So we're going to talk about what my dad's going to talk about, what the condition is. I'm going to ask him some questions as a layperson. I'm in business, not in medicine.

What is Trigeminal Neuralgia?

[01:00] like my parents, and then talk about what various treatment options are and how maybe just typical people, what you've seen or you've had other surgeons talk about maybe. So, tardjalma neurology is a fairly rare condition. It affects less than 200,000 people a year in the US, but certainly it's something that

[01:20] neurosurgeon C, was first accurately described in the 1750s and they described it as a facial spasm but a painful facial spasm and it developed the term tic de l'oréal, which really has stuck around through the years. And what it really is, it's a pain condition

[01:40] that sends electric-like shocks or lancinating pain into your face on one side. And it's been described as some of the worst pain that a human being can experience in their lifetime. And there's been many documented cases of people who have committed suicide because the pain can be so bad. So a little bit about the anatomy of the trigeminal nerve.

[02:00] It affects your face and the trigeminal nerve comes out of the brain and it gives branches to your face. And to get technical, there's three branches. There's the ophthalmic branch, the maxillary branch, and the mandibular branch. And so the ophthalmic branch gives sensation to your forehead and your eye socket and some of your scalp.

Anatomy of the Trigeminal Nerve

[02:20] Maxillary brans give sensation to your cheek and upper jaw and then the mandibular brans give sensation to your lower jaw and teeth. And so when people have these lancening episodes of pain it will shoot into those distributions mostly into the V2 and V3 which is the cheek and the lower jaw area.

[02:40] That's where it occurs the most. So is this is it just shocking things like lancing shocks in your face or just can it go to other parts because nerves are interconnected in my thought? So these nerves are only to your face. So Trigellum only feeds the whole area of the face by different distributions that we talked about.

[03:00] face and beyond just like the sensations that people feel, do they get stuff where like their face droops or anything like that or is it just internally they feel it? I mean they can have a little bit of facial weakness at times but it's mostly a painful phenomenon. You know and how is this set off? I mean it's sad for people because it can it can become so debilitating because just chewing

[03:20] or eating can set off an episode, or the wind hitting your face can set off an episode, or brushing your teeth. And so these poor people with the pain, they avoid eating or chewing, or when it's windy they don't go outside and they're so scared to brush their teeth. And so it's really a debilitating disease. In the sense it is pretty rare.

Symptoms and Triggers

[03:40] I mean less 200,000 people per year in the United States. Do you think some people just have no idea what they have or like it might get confused with is there anything it gets confused with? Yeah, it's a good question because um, it does get confused I mean a lot of people will go to their dentist when they're having pain into their jaw or their teeth and they'll see their dentist and the dentist sometimes will

[04:00] pull a tooth or do injections not knowing it's trigeminal neuralgia. So that's probably the main the main fool or would be you know you think it's a dental problem. So for someone who may be listening to this or who has seen people in the past or felt anything like that where they think it could be potentially

[04:20] actually trigeminal neurology, what would you think in your own opinion that they should do? What would be a good step for them? Yeah, I mean if anybody's having that severity of pain, you should definitely see your primary doctor first. Let him get an eye on what's going on and then often you'll initially

Diagnosis and Common Misdiagnoses

[04:40] get referred to a neurologist. So I'm a neurosurgeon, so I do surgery on the nerves, but a neurologist is someone who treats the nerves medically. So often people get sent to a neurologist and then from there you'll probably get a workup, right? So often they'll do an MRI of your brain and different tests to

[05:00] try to figure out is it trigeminal neurology or not. Once the diagnosis of trigeminal neurology is made, which is through a clinical diagnosis of your symptoms and potentially your imaging findings, then the first treatment is usually going to be medications. And often there's anti-seizure medications, believe it or not, that are used first for

[05:20] And sometimes that can control things well enough and sometimes that doesn't control it well enough. So if medications don't work, then you're on to looking at surgery. And common surgeries that are done would be, what they try to do to some extent is injure the nerve.

[05:40] Before we dive into surgery, can we take a step back quick? What are some of these tests or indications beyond the clinical finding? You said looking at imaging or stuff. What would be a few examples of that? When you do the imaging, the most common reason for people to get trigeminal neurology is there's a compression

Imaging and Causes

[06:00] of the nerve right when it comes out of the brain, which is called the brainstem. So when the nerve comes out of the brainstem, it's usually an artery or a vein that's up against the nerve that causes this condition. And so there's a surgery to treat that. But on the MRI, what you're really looking for is you want to see, do you see that artery or vein up against the nerve? Sometimes people can have a tumor.

[06:20] Unfortunately, you know, and it turns out to be that there's a tumor that has caused this or they could have a brain infection that caused this. Some people can have trauma from trauma in the past that started this whole process off. So the MRI is really looking for other pathologies, including the most common pathology, an artery or vein.

[06:40] What I'm hearing is basically it's not clear cut. They kind of are taking multiple different factors in and then can kind of, with the severe pain, narrow it in and think most likely you have trigeminal neurology. Right. I mean, you have to use how the patient presents and once you think it's trigeminal neurology, then you try to get an MRI to

[07:00] make sure is there a tumor or something else like that or just to try to identify what may be causing it. Okay and then to go back you were getting talking about if medications didn't work then there's potential surgery options. Yeah and so there's different surgeries. So you know one type of surgery is doing what's called a

First-Line Treatments: Medications

[07:20] and that's basically trying to injure the nerve. And what you do is you can either do a balloon, like you can put a balloon up against this nerve through a procedure and inflate the balloon for a minute or so and then deflate the balloon, that will injure the nerve and that will help with the pain. Some procedures

[07:40] put glycerol directly into the nerve, inject glycerol, other procedures burn the nerve. But those are all procedures that can help kind of temporarily. They can last for months and years, but they don't last forever. So they typically need to be performed again. Okay, so those are the procedures to kind of injure the nerve. What about the other procedures?

[08:00] that you are living to. Yeah, so another procedure is called radiosurgery and it's not true surgery. It's focused radiation therapy right to that nerve. And so the purpose of that again is to try to injure the nerve in a way which will help stop the episodes of pain. That specific procedure, the

[08:20] radiotherapy, which is focus radiation beam to the nerve, that can take months to a nerve to take effect. So it's not as immediate as the other procedures that we do. Okay. And with, so it's kind of sounding like with these procedures, the one can last a couple months to a year. There is no long-term cure right now.

[08:40] for trigeminal syndrome? Well, that's not completely true. I mean, the most definitive procedure that you can have, so often you lead up to the more difficult procedure. So often people will go through these procedures. They might start at their dentist and get an injection into the nerve in the jaw. And then if that doesn't work and medications don't work, then often they get the other procedures.

Surgical Options: Nerve Injury Techniques

[09:00] But if everything fails, there is a procedure called a microvascular decompression, and I've done a fair amount of these. And what you do is you have to take off a piece of bone over the back of the skull, and using magnification and microscope, you dissect your way deep to where the brainstem is, where the trigeminal nerve comes right off the brainstem.

[09:20] And then using, you know, microsurgical techniques, you look for that artery or vein. Typically, it's one or the other. And when you find that, then what you gently do is you put a Teflon pad, like a little piece of soft gauze, between the nerve and the blood vessel. And usually when that procedure is done,

[09:40] It's 90% plus effective at treating trigeminal neuralgia for the long term. So it's a pretty definitive procedure. It's the most invasive, but it's been the most promising procedure for long-term relief. Yeah, because that's not kind of a typical thing in all serves. You want to go from the least invasive.

[10:00] methodology procedure and see if each one works, starting with medication all the way up to start doing simple procedures and then only if those things don't work and relieve the pain and symptoms, then you get to the most important. And sometimes, I know when I was in training we did a lot of these and we would always put that gauze, but we

[10:20] We would also cut a portion of the nerve with scissors. And we did that just to make sure that we were injuring the nerve enough so the trigeminal pain went away. And you have to be careful. Obviously there are sensory fibers and motor fibers that go to your muscles of mastication for chewing. So the motor nerve is always underneath the sensory nerve. So you have to be very careful that

Microvascular Decompression: A Definitive Surgery

[10:40] you weren't cutting the motor nerve. But I think nowadays a lot of people don't cut the nerve at all. They just put the Teflon in between and that seems to do the trick. And they think maybe it's the pulsation of the artery up against the nerve that causes the problem with trigeminal or alginae. Yeah and obviously this is all just your opinion.

[11:00] It is. There are going to be so many other experts on trigeminal neurology who have other feelings about things and what procedure works the best. And a lot of other information they could probably give you that I don't specialize in trigeminal neurology, but I know of it and have done procedures like this for it. And so it's my opinion about just

[11:20] in general what trigeminal neuralgia is and what there is out there to offer. Yeah, I was just trying to give that as a disclaimer of like, we do these, you know, we're trying to be educational, you're providing your opinion as a neurosurgeon, but it's not at all 100% true of like nothing is and everything's always debated, right? Yeah, and there's always differences.

[11:40] has different opinions on things. But I think that's a pretty generalized overview of tardeminal oralgia and its symptoms and how it can be treated. But I think if you're anybody out there who has pain like this, definitely go to your doctor, have them examine you. And then if they think you need to see a neurologist or need an MRI,

[12:00] you go from there. But you don't have to live with it. A few follow-up questions because so when we talk about severe pain, I'm assuming we're talking about 9 or 10 here. You said it's an 11 out of 10. I mean people describe it. It's like a lightning bolt shooting through your face how people into your teeth

[12:20] teeth and jaw. So if someone's like, if you have pain in your face and you're like, you think it's like hurt someone, it's probably not this versus it's like all out pain. Yeah. Well the way you differentiate trigeminal neurology. So if somebody can have a toothache that's throbbing, that's there all the time, probably not trigeminal neurology. Trigeminal neurology is shooting episodes of excruciating

[12:40] pain that can last typically a few seconds. For some people it's worse. It can last up to a minute or two. But most people just get these few seconds of electric shooting like pain into their face, excruciating and then it goes away. But people can have 10, 20 episodes a day. I mean it can be. It's almost that sounds so bad. You probably can't even like operate normally like if you're having that

[13:00] Well and think about you're worried when I eat and chew is it going to set off that pain and so you know how it is with anything. If something causes pain you don't want to do it. So it's very very debilitating to people because they're so worried that the next wind that hits their face or the ice that they're drinking in their mouth you know chewing in their

[13:20] mouth or anything can set it off. And we talked about some of these potential surgeries and other methods to try to help cure it or reduce the symptoms and everything. What are, I mean I think people would be curious, what are some potential risks, what are like likelihoods on stuff like that? Did you just, in your opinion? As far as what having a procedure done? Yeah, just your

[13:40] Like stuff like that. Yeah, like how do you think it is? It is super risky or what? You know with where we've come how medicines progressed a long way. What do you think because you know a lot of people are scared all the time with any surgery of any type So I don't know just your thoughts on that I think would be helpful the first procedures I talked about the rhizotomies where you try to you know

[14:00] injure the nerve a little bit. You know, the risk of those are basically, a lot of it depends on your surgeon if he knows the anatomy because when you're putting a needle up to the base of the skull where this nerve comes out, you got to know where the needle is because there's arteries there, there's other nerves, and so if somebody puts the needle too deep or

[14:20] They hit an artery and you can have a complication and you can have bleeding and there's a risk of infection. So they tend to be safe procedures, but obviously there's risk with everything. Just like the basic risk of surgery, then, like you were saying, the risk of infection, the risk of blood loss. That's pretty much every procedure. But these are very common procedures that are performed, I think.

[14:40] And they're pretty safe. You probably want to, just like anything, when you find a surgeon, try to get some reviews about, like look up reviews of them online. Make sure that they kind of don't have to specialize and make sure they do a fair amount of these and do them routinely. And any recs that you can get from other people. So I think that's always the huge thing of just picking any surgeon. But then, like you said, for me, what I would

[15:00] is I want to make sure this person does it a decent amount at least. It's not something they do every once in a while. And with any surgery I would say that. I mean people ask me how many you know how many surgeries have you done? How many of these have you done? And I don't ever get offended. I mean they have the right to ask that and you know if I've only done a few of something I'll say yeah I'm not the guy who does the most of these so you may want to see somebody who specializes in

[15:20] But if I do thousands of one procedure, I let people know. Because I've heard you say before too, when something's more rare, there's times where you refer something to Ohio State or a place where there's more specialized too, not for specifically trigeminal neurology. Just if there's a rare condition that comes in, it's not something that you are specializing to.

Final Thoughts and Advice for Patients

[15:40] Well, because I mean, we're neurosurgeons, right? So neurosurgeons are pretty specific in general. But neurosurgeons, there's a lot of specific categories of neurosurgery. There's neurosurgery that's specific to brain tumors and vascular malformations and tumors. And so when you go to an institution like Mayo Clinic or

[16:00] Cleveland Clinic or Ohio State, there are surgeons there that only do brain tumors or they only operate on the spine or they only do congenital abnormalities. So sometimes it's not a bad idea to see somebody who specializes in that area if where you are the surgeon is a general neurosurgeon but doesn't specialize in that in your condition.

[16:20] Yeah, I think that's good to know. But yeah, hopefully, I mean, I just learned a decent amount of trilineraldia because I always see people commenting stuff about that or they want you to talk about it. So I thought we'd do this podcast episode, do a pretty somewhat deep dive on it or just

[16:40] general overview. I think it's a good general overview. I mean you could certainly dive a lot deeper than this but I think that gives you a general idea of what trigeminal neurology is and kind of like what the various treatments are along the way and what to do if you have facial pain or eye pain or you know tooth jaw pain pain in your tooth

[17:00] them teeth that's shooting, sorry, then you should see your doctor. That was a good episode I think for people if they do think they might have it or if it's something they're living with. And let us know if you guys thought this was helpful, if you know of anyone with trigeminal neurology, maybe share the episode with them.

[17:20] Let us know if you want us to do more episodes like this on various topics where my dad might have subject matter expertise. I hope everyone has a great day and talk to you later, dad.