Unraveling Trigeminal Neuralgia – In Depth Doctor’s Interview
Robert Goodman, MD, PhD., Chairman, Department of Neurosurgery at St. Luke’s-Roosevelt Hospital in New York, discusses a way to treat face pain.
We’re here to talk about trigeminal neuralgia, I don’t think a lot of people have heard of it.
Robert Goodman: It’s a fairly rare condition. It’s not unusual for people to have pain in their face or pain in their mouth and their teeth. But only a small percentage of people that have pain in their face actually have trigeminal neuralgia. Most people that have pain have their pain from other causes, not trigeminal neuralgia. Unfortunately it’s often very difficult for them to find out that they have trigeminal neuralgia because almost everybody that has pain in their mouth has it from something wrong with their tooth or something else going on and not from this nerve problem. So they often see dentists or doctors that don’t recognize that it’s actually trigeminal neuralgia, that it’s actually this nerve problem. I It’s a pretty rare condition, but trigeminal neuralgia basically is a short circuit in the trigeminal nerve. The trigeminal nerve is a sensation nerve that just carries sensation from the face into the brain. If you lost that nerve, your face would be completely numb but you would still be able to move your face because the nerve that controls the muscles of the face is a separate nerve and that would still be working. The nerve has two kinds of sensation nerves in it, there are about a hundred and forty thousand nerve fibers in the trigeminal nerve and most of them actually are there to send normal messages, sensation messages, from the face and to the brain. I If something touches your face you would have a message sent into your brain so your brain would know something touched your face. It’s not pain messages those are just regular sensation messages. And then there is a different kind of sensation nerve that travels in the trigeminal nerve that’s in the same bundle these are nerves that are specialized only to send messages if something painful happens in your face. They’re only supposed to send messages if you get poked by a needle, or cut, or burned, but they travel in the same bundle with these other nerves. So all the time you’re having messages sent through the regular nerves and almost never getting messages sent through the pain nerves. And they’re supposed to be insulated so they don’t bother each other so that when one nerve is sending messages the other nerves don’t even know about it. But the trigeminal nerve if it’s damaged in a certain way can develop a problem with the insulation so then the nerves are bothering each other. So the normal nerves are sending their messages, electrical messages, and they irritate the pain nerves which are sort of trying to ignore those messages, but if they get bothered too much then the pain nerves will be triggered to go berserk for a short time, basically they have a burst of activity. So all of a sudden they’ll send a burst of messages. Of course the brain will think its something painful happening in the face when that happens. And it’s triggered by regular stimulation of the face like if wind touches the face and those regular nerves are sending messages they can then trigger the pain nerves to go berserk. They usually won’t go berserk for more than a few seconds, they might go berserk for thirty seconds or a minute but they get tired out and they have to rest. Usually, they have to rest for a while before they could then be ready to be irritated again. So basically what it is is these pain nerves are having a seizure. It’s just like if you had a seizure in the upper part of the brain when one little area of the brain can go berserk and affect the rest of the brain and make people have a convulsion. This is a similar kind of thing but it’s only happening in these pain nerves that are from the face. So when people get this burst of activity, the seizure, it’s only making them feel like they have this horrible pain all of a sudden in their face. And it can be any part of the face, it might just be the jaw or the cheek or they might feel like it’s in the lower teeth or the upper teeth for ninety percent of people it’s in the either upper or lower teeth area. For ten percent of people it actually primarily affects the branch that goes to the eyes. So they may feel a sudden burst of pain in their eye and get even tearing or their eye might turn red during the time that they have this burst of activity. —I It has to be triggered by the regular nerves, in fact we know that if we totally got rid of the regular nerves and left the pain nerves intact (still functioning), you would never get a pain attack. Because they don’t spontaneously have this burst of activity, it only happens if they’re irritated by the regular nerves. But if you lost all of your regular nerves your face would feel funny like thick or wooden and that’s not a great solution for people. And it turns out the reason we really know that this is a burst of activity like a seizure is because the only medicine that can stop these attacks is the same medicine that works to stop seizures. And in fact the medicine that stops what we call focal seizures, seizures that occur in one part of the brain is the medicine that works the best to stop trigeminal neuralgia attacks. It’s Tegretol or its carbamazepine, the generic name. And there’s another form of it that’s very similar called Trileptal it’s a different chemical form but it works the same way as Tegretol.
Is that always the first line of defense?
Robert Goodman: It is, well it should be. The neurologists typically are the doctors that would treat patients with trigeminal neuralgia and not all neurologists agree on what they think is the best first drug to use. I happen to think Tegretol or Trileptal is really the best. In fact I think it’s the only medicine that should really be tried before thinking about the surgical options.
Damaging the insulation to the nerve how does that happen?
Robert Goodman: Why does that happen, that’s a good question. Unfortunately in medicine we don’t know the answer to why questions as well as we would like to. We have ideas and speculation and we know that in many cases it’s caused by an artery that damages the nerve. And in fact in some cases people have an abnormal artery. One of the patients I operated on the other day happened to have compression by the basilar artery, which is a normal artery. Everyone has a basilar artery but it’s usually very far away from the trigeminal nerve but in some people it actually gets elongated and can actually move off to the side and touch the nerve. And it’s rare for that to happen but that’s one of the ways you can get it. If it’s a large artery and it’s pressing up against the trigeminal nerve clearly it causes damage to the nerve and causes this condition to develop. But in most people it seems to occur because of a normal size, a smaller artery that is normally in the vicinity of the trigeminal nerve. But in some cases as it gets elongated over time, you know as we get older our arteries get a little longer. They also get firmer, they get harder. And so the arteries can get wedged up against the nerve and every time we have a heartbeat the arteries that are sitting in the fluid around the nerve and around the brain those arteries jump actually, they move significantly. And if it’s wedged up against the nerve and with every heartbeat basically pounding the nerve it can cause damage to the nerve. I It probably has to be going on for maybe even years before it causes damage enough for this short circuit to develop the trigeminal neuralgia problem. So that’s the way we think that probably ninety percent of people get this but there’s a tiny percentage of people that have trigeminal neuralgia because of multiple sclerosis. They have a problem that’s actually in the brain stem and the pons which is where the trigeminal nerve enters the brain. And if they have a problem with the insulation, that’s what multiple sclerosis is; it affects the insulation around nerves. And so if it happens right in the wrong spot or the right spot in where the trigeminal nerve enters the brain, it can make people get a short circuit, get trigeminal neuralgia. It looks exactly the same as regular trigeminal neuralgia except that it’s harder for us to get that under control with medications. It’s usually more refractory than the standard kind of trigeminal neuralgia. But only three percent of people that have trigeminal neuralgia have it because of MS. One other thing I should tell you though, about one percent of people that have trigeminal neuralgia actually have a tumor that’s pressing on the nerve. That’s rare but if people that have trigeminal neuralgia if they get an MRI of their brain we know if they have MS we see that right away, we know if they have a tumor we can see that clearly. In fact we can even do an MRI in a very special way to see the blood vessels and whether the blood vessels are touching the nerve or pressing on the nerve. So we usually have a pretty good idea in each individual patient what is the cause of their trigeminal neuralgia, at least I think so. There’s still some controversy and some people are not convinced that the patients that don’t have an abnormal artery touching the nerve or don’t have a tumor and don’t have MS, some neurologists that we understand why those people have trigeminal neuralgia.
How many people are helped enough that you don’t have to do surgery with the medicine?
Robert Goodman: You know that’s a difficult question because what I think has helped enough is different than what a lot of other people think has helped enough. I happen to think that the goal of the treatment should be for a patient to have no pain attacks at all, be able to eat normally, talk normally and not to be in fear that they’re going to have a sudden attack of pain. And be able to function without side effects that are bothersome from their medication. And that is not achieved in probably not in the majority of patients. But a majority of patients seem to be satisfied with the treatment that they have. Usually that means living with pain here and there, sometimes maybe acting up quite a bit at certain times. Maybe acting up for a week or two at a time and then subsiding. Or they have their medication at a level that makes them feel a little groggy or having trouble concentrating. In order to avoid the pains they will keep themselves at a level of medication, sometimes taking two or three medicines together and they may not even realize how much the medication is affecting their functioning. Because they would only know if they were able to decrease the medicine and find out that they actually would be clear headed and more awake and functioning better. So I think that if you cannot take carbamazepine (Tegretol) or Trileptal (the most effective medications) if you can’t take that one medication at a dose so when you take it every day you are able to function normally and have no pain, then I think you should be considering one of the two surgical procedures that I do because those surgical procedures have an excellent chance to eliminate the pain completely and a very low risk of causing morbidity or causing side effects.
Tell me about the surgeries.
Robert Goodman: Alright there are two and I usually go in this order which is the first one is not really a surgery. The first one is more appropriately called a procedure probably because it doesn’t involve cutting open the patient. It involves beams of radiation that are focused on the nerve actually. We can deliver radiation just to the trigeminal nerve and nowhere else in a very precise way so that radiation is able to damage the nerve. What we do is actually kill a certain percentage of the nerve fibers. We don’t know exactly what percentage we kill and it could be different in each patient but we give the same exact amount of radiation to each patient very precisely. And this has been done now almost twenty years and has actually replaced an old treatment that we used to do regularly (and still some people do) which is to use a needle. We used to do a procedure with a needle and I still do rarely where we put a needle through the cheek and it actually is able to go through one of the openings in the skull where one branch of the trigeminal nerve is exiting to come out of the skull and go into the face. We can actually put the needle up through that hole and get the tip of the needle up to where the three branches of the trigeminal nerve are coming together into one bundle. And we can use the needle to damage the nerve there with a variety of ways. One is heat or we can inject alcohol or we can even use a balloon to put pressure on the nerve and to kill part of the nerve and that procedure is very effective and it used to be used very commonly until we figured out that we could damage that same part of the nerve much more precisely and consistently and more safely if we used this focused radiation. So this machine that was actually developed or they actually hoped it was going to be used to make lesions in the brain to help people that had maybe Parkinson’s or–.
So use the gamma knife?
Robert Goodman: Exactly, the gamma knife is one way to do it. The Gamma Knife delivers what is called stereotactic radiosurgery. But it can be done with the Gamma Knife. It can be done with a Cyber Knife. It can be done with linear accelerator machines that are designed to be able to deliver this radiation to a tiny target and outside of that target almost no significant radiation is delivered. And the trigeminal nerve is only a few millimeters in diameter in the area that we’re aiming this radiation and around it is just fluid. We can deliver the radiation so that it only hits the nerve and the fluid right around it and doesn’t go anywhere else and we can give the same exact dose every time. And since it’s been done for a long time now people have tried some different doses. We have very good experience to know what to expect from that treatment and we know—I started off using a treatment of eighty gray it’s called and after a few years I had two patients that developed a problem from it which is numbness. Because if we give too much radiation it can cause too much damage to the nerve and if it kills the nerve too much it makes people numb in half their face permanently. So what we want is to be able give an amount of radiation that kills a percentage of the nerves but preserves enough nerve fiber so that you still have basically normal sensation in the face. But if we reduce the percentage of nerves enough it can eliminate trigeminal neuralgia because you need a certain number of nerves to be able to have the attacks of pain. And so after that experience with two patients after four or five years I switched to a slightly lower dose, seventy five gray is what I’ve used since then. That’s now eight years. And with that dose I have not had any patient that has developed complete numbness and still a high percentage of patients are very effectively treated by this. I it’s terrific it’s like magic because the procedure is done in just a few hours; it’s basically a painless procedure. We have to put a holder on a patient and get an MRI done and they have to be holding still for awhile but it basically is like a magic procedure because they go home right afterwards and the next day they’re behaving normally. It takes a little while for the radiation to have its effect, usually it takes a few weeks and it actually takes months for it to have its full effect on the nerve. But the problem is that the thing that caused, the problem that caused the trigeminal neuralgia to develop in the first place is not changed by this procedure. And the nerve can still be affected over time, the residual nerve. So patients who have this procedure often get very good results initially, eighty percent of patients do very well for the first six months, a year or two years but over time they have a significant risk of having their neuralgia come back again and even five years later, ten years later. And then they might need either stronger medication or possibly even another procedure down the road. But it’s a terrific procedure especially for people who are older and may not be expected to be around for ten or fifteen years or twenty years and many patients that have trigeminal neuralgia are over seventy. And so for patients that are older or have medical problems that would make it difficult for them to handle a surgery typically the radiation treatment would be the first choice, although both procedures are excellent choices for almost everybody. The real surgery, the microvascular decompression surgery is a whole different thing, it’s a real surgery and the idea is to actually cure trigeminal neuralgia. It has an excellent chance of curing it, it has an excellent chance of eliminating the need to take the medication and it lasts much longer, it has a much better chance of curing the problem forever and not having to come back again in the future. And that means for the people that have a blood vessel that’s touching the nerve or pressing on the nerve having a surgery which is done to move the blood vessel away from the nerve and to put a cushion so that it can’t touch the nerve again. Basically that’s all we do once we get to the nerve. Obviously, to do that we have to do a surgery with the patient under general anesthesia, asleep, in the operating room. It takes usually between two and three hours to do the surgery; a lot of the surgery is actually getting to the nerve. Which means having to get down to the bone behind the ear, we have to make a small opening in the bone behind the ear, it’s about a one inch diameter opening and then having to open the sac that holds the fluid around the brain. And with the microscope we can work through the fluid space next to the brain, I barely touch the brain at all for this surgery because we can work in the fluid space and see the nerve very easily with a microscope. And once we get to the nerve and we see the blood vessels there, sometimes there are veins also that are affecting the nerve, that are touching the nerve. We have extra veins. We don’t need all of our veins. And veins we can’t really move safely. If we see a vein that’s causing trouble we actually can sacrifice that vein. We can cauterize it and get rid of it safely. Arteries though we can’t sacrifice (you need the arteries). Luckily usually arteries are very easy to move. And we can usually move the artery easily away from the nerve and then there’s a space between the artery and the nerve and I can put a cushion in between that is a permanent sponge or Teflon (we can use what we call shredded Teflon felt) which is kind of like a fuzzy material, a soft material that we can put in that is permanent that would prevent the blood vessel, the artery from getting back to where the nerve is, to touching the nerve. And then obviously we have to close things up. Actually where the bone has been removed I put in artificial bone, a hard plastic that feels just like bone. And obviously there’s muscle there that has to be closed and skin.
Is it relief immediately?
Robert Goodman: Yes. The patients after that surgery wake up, obviously go to the intensive care unit or the recovery room and the first night may be a little groggy. Many patients have a trigger point that they know will make them get a pain. That they know they have to avoid touching a certain place on their face because they’ll get a pain if they touch that place. Very, very often as soon as the patient is awake enough, and sometimes within an hour of the surgery, I can have them touch that spot, and they discover that it doesn’t cause the pain and that’s usually an excellent sign that the problem is gone.
Is it always successful?
Robert Goodman: No it’s not always successful and sometimes it takes a day or two for the nerve to settle down. So if they have pains the first day or two it’s not surprising, it doesn’t mean that it’s not going to be successful. But for over ninety percent of people it does eliminate the pain problem and for those people it usually stays gone. They have a tiny chance that it can come back later on and for the people that it does come back in very often it responds to medication much more readily than it did in the first place. It’s not as severe of a trigeminal neuralgia as it was in the beginning. And most of the patients that have this, we call it MVD surgery because it’s hard to say microvascular decompression all the time. But people that have the MVD surgery typically are able to get off of their medication within weeks. I try to get people to go slowly getting off of that medication because it can be dangerous to get off too quickly but many patients just stop it on their own because they realize they don’t need to be taking it to get rid of their pain anymore and for most patients, it’s really a cure for them and they don’t have to deal with the problem again the rest of their life.
What is the most severe case that you’ve seen?
Robert Goodman: I don’t know about the most severe case. There are some patients, many patients, I can’t say that it’s just one but there are many patients that have pains that are almost continuous. They are miserable. In fact for many patients they cannot eat or swallow because they know every time they try to eat or swallow liquids they’re going to have a terrible pain. And so for those patients it can be an emergency to cure them, to get rid of their pain. Sometimes we can do that by basically raising their medication to a very high level which we know will cause side effects but at least usually will get their pain under control. That’s not a long term solution but it’s usually a good temporary solution to be able to figure out which of these other treatments we’re going to use, the surgeries.
I thought this was a really alarming fact that trigeminal neuralgia is one of the leading causes of suicide.
Robert Goodman: I’m not shocked. It’s funny that you said that, I haven’t seen that but over a hundred years ago brain surgery was extremely dangerous. When people had brain surgery they actually had almost a fifty percent chance of dying from the surgery. Certainly more than a twenty percent chance even with the best neurosurgeons. So people had to have a pretty bad problem in order to have a brain surgery back then and it was usually brain tumors or some kind of bad stroke or something. But one of the most common surgeries back then was for people with trigeminal neuralgia because they knew that if they lifted up the brain, actually the temporal lobe they could get to the nerve and cut it and it would make peoples face numb but it would completely eliminate their neuralgia. And people were—many patients with trigeminal neuralgia were willing to have that surgery even though they knew there was more than a twenty percent chance they were going die during the surgery rather than to have to keep living with the pain attacks.
Robert Goodman: And the big problem that most people say, actually that have this, most of the time they’re not having pain. The pains, for almost everybody that has trigeminal neuralgia, the pain attacks are only a very tiny percentage of the day of their time that they’re awake, and it can happen at night too and wake people up. But they spend all the rest of their time worried about when the next attack is going to happen and many patients know that certain things they do are likely to make them get an attack. So they’ll avoid doing things like avoid talking, avoid being outside, avoid having any wind touch their face, avoid eating, avoid swallowing because they’re afraid they’re going to get an attack if they do these things.
Abe and the two people upstairs I think they’re both women, did they all have the surgery or the other procedure?
Robert Goodman: They all had the surgery, in fact if the radiosurgery procedure is done they don’t stay overnight in the hospital. The radiation, the stereotactic radiosurgical treatment is an ambulatory outpatient procedure, people go home right afterwards. They’re both great solutions and I, what I typically do is I explain to patients if they are a candidate for the MVD surgery, meaning that they have a blood vessel that we see on the MRI and they’re in reasonable medical shape so they can handle the surgery with a low risk of having a complication then I present both of these options to every patient. And of course every patient asks me which do I think is the better treatment.
You go with the MVD.
Robert Goodman: No I actually don’t, some surgeons do. Unfortunately, there are many neurosurgeons that take care of patients with trigeminal neuralgia that only do one of these treatments. They only do either the radiation or they do the MVD surgery but they don’t have experience doing both. They don’t offer both. And so if you see one of those doctors you can be pretty sure what they’re going to recommend their treatment. And I really disagree with that approach because I believe both of these are extremely effective very safe successful treatments. I just think that the patient really should decide which of these two is better for that patient, for this person. I can help them because I have some idea of which I think is better for each individual patient but I don’t rule out their choosing the other one and I try to give them as realistic an idea as possible of the difference between the two. And in general what I do is I say, if you’re old you should have the stereotactic radiosurgery and if you’re young you should have the MVD surgery. Of course every patient asks me what’s old and what’s young and I happen to think pretty much people that are over seventy five are old, I may change my mind in a few more years. But if you’re over seventy five you’re old and if you’re under sixty five you’re young, pretty much. There are some people that are in between sixty five and seventy five and for them I say, if you feel like you’re under sixty five then you’re young and if you feel like you’re over seventy five you’re old.
END OF INTERVIEW
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