Continuum Audio

• Approach to Vision Loss With Dr. Nancy Newman

  Diagnosing and differentiating among the many possible localizations and causes of vision loss is an essential skill for neurologists. The approach to vision loss should include a history and examination geared toward localization, followed by a differential diagnosis based on the likely location of the pathophysiologic process.  In this episode, Aaron Berkowitz, MD, PhD, FAAN speaks with Nancy J. Newman, MD, FAAN, author of the article “Approach to Vision Loss” in the Continuum® April 2025 Neuro-ophthalmology issue.  Dr. Berkowitz is a Continuum® Audio interviewer and a professor of neurology at the University of California San Francisco in the Department of Neurology and a neurohospitalist, general neurologist, and clinician educator at the San Francisco VA Medical Center at the San Francisco General Hospital in San Francisco, California.  Dr. Newman is a professor of ophthalmology and neurology at the Emory University School of Medicine in Atlanta, Georgia.  Additional Resources Read the article: Approach to Vision Loss Subscribe to Continuum®: shop.lww.com/Continuum  Earn CME (available only to AAN members): continpub.com/AudioCME  Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com  Social Media facebook.com/continuumcme  @ContinuumAAN  Host: @AaronLBerkowitz  Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME subscribing to the journal, and exclusive access to interviews not featured on the podcast. Dr Berkowitz: This is Dr Aaron Berkowitz, and today I'm interviewing Dr Nancy Newman about her article on the approach to visual loss, which she wrote with Dr Valerie Biousse. This article appears in the April 2025 Continuum issue on neuro-ophthalmology. Welcome to the podcast, Dr Newman. I know you need no introduction, but if you wouldn't mind introducing yourself to our listeners. Dr Newman: Sure. My name's Nancy Newman. I am a neurologist and neuro-ophthalmologist, professor of ophthalmology and neurology at the Emory University School of Medicine in Atlanta, Georgia. Dr Berkowitz: You and your colleague Dr Biousse have written a comprehensive and practical article on the approach to visual loss here. It's fantastic to have this article by two of the world's leading experts and best-known teachers in neuro-ophthalmology. And so, readers of this article will find extremely helpful flow charts, tables and very nuanced clinical discussion about how to make a bedside diagnosis of the cause of visual loss based on the history exam and ancillary testing. We'll talk today about that important topic, and excited to learn from you and for our listeners to learn from you. To begin, let's start broad. Let's say you have a patient presenting with visual loss. What's your framework for the approach to this common chief concern that has such a broad differential diagnosis of localizations and of causes? Where do you start when you hear of visual loss? How do you think about this chief concern? Dr Newman: Well, it's very fun because this is the heart of being a neurologist, isn't it? Nowhere in the nervous system is localization as important as the complaint of vision loss. And so, the key, as any neurologist knows, is to first of all figure out where the problem is. And then you can figure out what it is based on the where, because that will limit the number of possibilities. So, the visual system is quite beautiful in that regard because you really can exquisitely localize based on figuring out where things are. And that starts with the history and then goes to the exam, in particular the first localization. So, you can whittle it down to the more power-for-your-buck question is, is the vision lost in one eye or in two eyes? Because if the vision loss clearly, whether it's transient or persistent, is in only one eye, then you only have to think about the eyeball and the optic nerve on that side. So, think about that. Why would you ever get a brain MRI? I know I'm jumping ahead here, but this is the importance of localization. Because what you really want to know, once you know for sure it's in one eye, is, is it an eyeball problem---which could be anything from the cornea, the lens, the vitreous, the retina---or is it an optic nerve problem? The only caveat is that every once in a while, although we trust our patients, a patient may insist that a homonymous hemianopia, especially when it's transient, is only in the eye with the temporal defect. So that's the only caveat. But if it's in only one eye, it has to be in that side eyeball or optic nerve. And if it's in two eyes, it's either in both eyeballs or optic nerves, or it's chiasmal or retrochiasmal. So that's the initial approach and everything about the history should first be guided by that. Then you can move on to the more nuanced questions that help you with the whats. Once you have your where, you can then figure out what the whats are that fit that particular where. Dr Berkowitz: Fantastic. And your article with Dr Biousse has this very helpful framework, which you alluded to there, that first we figure out, is it monocular or binocular? And we figure out if it's a transient or fixed or permanent deficit. So, you have transient monocular, transient binocular, fixed monocular, fixed binocular. And I encourage our listeners to seek out this article where you have a table for each of those, a flow chart for each of those, that are definitely things people want to have printed out and at their desk or on their phone to use at the bedside. Very helpful. So, we won't be able to go through all of those different clinical presentations in this interview, but let's focus on monocular visual loss. As you just mentioned, this can be an eye problem or an optic nerve problem. So, this could be an ophthalmologic problem or a neurologic problem, right? And sometimes this can be hard to distinguish. So, you mentioned the importance of the history. When you hear a monocular visual loss- and with the caveat, I said you're convinced that this is a monocular visual problem and not a visual field defect that may appear. So, the patient has a monocular deficit, how do you approach the history at trying to get at whether this is an eye problem or an optic nerve problem and what the cause may be? Dr Newman: Absolutely. So, the history at that point tends not to be as helpful as the examination. My mentor used to say if you haven't figured out the answer to the problem after your history, you're in trouble, because that 90% of it is history and 10% is the exam. In the visual system, the exam actually may have even more importance than anywhere else in the neurologic examination. And we need as neurologists to not have too much hubris in this. Because there's a whole specialty on the eyeball. And the ophthalmologists, although a lot of their training is surgical training that that we don't need to have, they also have a lot of expertise in recognizing when it's not a neurologic problem, when it's not an optic neuropathy. And they have all sorts of toys and equipment that can very much help them with that. And as neurologists, we tend not to be as versed in what those toys are and how to use them. So, we have to do what we can do. Your directive thalmoscope, I wouldn't throw it in the garbage, because it's actually helpful to look at the eyeball itself, not just the back of the eye, the optic nerve and retina. And we'll come back to that, but we have in our armamentarium things we can do as neurologists without having an eye doctor's office. These include things like visual acuity and color vision, confrontation, visual fields. Although again, you have to be very humble. Sometimes you're lucky; 30% of the time it's going to show you a defect. It has to be pretty big to pick it up on confrontation fields. And then as we say, looking at the fundus. And you probably know that myself and Dr Biousse have been on somewhat of a crusade to allow the emperor's new clothes to be recognized, which is- most neurologists aren't very comfortable using the direct ophthalmoscope and aren't so comfortable, even if they can use it, seeing what they need to see. It's hard. It's really, really hard. And it's particularly hard without pupillary dilation. And technology has allowed us now with non-mydriatic cameras, cameras that are incredible, even through a small pupil can take magnificent pictures of the back of the eye. And who wouldn't rather have that? And as their cost and availability- the cost goes down and their availability goes up. These cameras should be part of every neurology office and every emergency department. And this isn't futuristic. This is happening already and will continue to happen. But over the next five years or so… well, we're transitioning into that. I think knowing what you can do with the direct ophthalmoscope is important. First of all, if you dial in plus lenses, you can't be an ophthalmologist, but you can see media opacities. If you can't see into the back of the eye, that may be the reason the patient can't see out. And then just seeing if someone has central vision loss in one eye, it's got to be localized either to the media in the axis of vision; or it's in the macula, the very center of the retina; or it's in the optic nerve. So, if you get good at looking at the optic nerve and then try to curb your excitement when you saw it and actually move a little temporally and take a look at the macula, you're looking at the two areas. Again, a lot of ophthalmologists these days don't do much looking with the naked eye. They actually do photography, and they do what's called OCT, optical coherence tomography, which especially for maculopathies, problems in the macula are showing us the pathology so beautifully, things that used to be considered subtle like central serous retinopathy and other macula. So, I think having a real healthy respect for what an eye care provider can do for you to help screen away the ophthalmic causes, it's very, very important to have a patient complaining of central vision loss, even if they have a diagnosis like multiple sclerosis, you expect that they might have an optic neuritis… they can have retinal detachments and other things also. And so, I think every one of these patients should be seen by an eye care provider as well. Dr Berkowitz: Thank you for that overview. And I feel certainly as guilty as charged here as one of many neurologists, I imagine, who wish we were much better and more comfortable with fundoscopy and being confident on what we see. But as you said, it's hard with the direct ophthalmoscope and a non-dilated exam. And it's great that, as you said, these fundus photography techniques and tools are becoming more widely available so that we can get a good look at the fundus. And then we're going to have to learn a lot more about how to interpret those images, right? If we haven't been so confident in our ability to see the fundus and analyze some of the subtle abnormalities that you and your colleagues and our ophthalmology colleagues are more familiar with. So, I appreciate you acknowledging that. And I'm glad to hear that coming down the pipeline, there are going to be some tools to help us there. So, you mentioned some of the things you do at the bedside to try to distinguish between eye and optic nerve. Could you go into those in a little bit more detail here? How do you check the visual fields? For example, some people count fingers, some people wiggle fingers, see when the patient can see. How should we be checking visual fields? And what are some of the other bedside tasks you use to decide this is probably going to end up being in the optic nerve or this seems more like an eye? Dr Newman: Of course. Again, central visual acuity is very important. If somebody is older than fifty, they clearly will need some form of reading glasses. So, keeping a set of plus three glasses from cheapo drugstore in your pocket is very helpful. Have them put on their glasses and have them read an ear card. It's one of the few things you can actually measure and examine. And so that's important. The strongest reflex in the body and I can have it duke it out with the peripheral neurologists if they want to, it's not the knee jerk, it's looking for a relative afferent pupillary defect. Extremely important for neurologists to feel comfortable with that. Remember, you cut an optic nerve, you're not going to have anisocoria. It's not going to cause a big pupil. The pupils are always equal because this is not an efferent problem, it's an afferent problem, an input problem. So basically, if the eye has been injured in the optic nerve and it can't get that information about light back into the brain, well, the endoresfol nuclei, both of them are going to reset at a bigger size. And then when you swing over and shine that light in the good optic nerve, the good eye, then the brain gets all this light and both endoresfol nuclei equally set those pupils back at a smaller size. So that's the test for the relative afferent pupillary defect. When you swing back and forth. Of course, when the light falls on the eye, that's not transmitting light as well to the brain, you're going to see the pupil dilate up. But it's not that that pupil is dilating alone. They both are getting bigger. It's an extremely powerful reflex for a unilateral or asymmetric bilateral optic neuropathy. But what you have to remember, extremely important, is, where does our optic nerve come from? Well, it comes from the retinal ganglion cells. It's the axons of the retinal ganglion cells, which is in the inner retina. And therefore inner retinal disorders such as central retinal artery occlusion, ophthalmic artery occlusion, branch retinal artery occlusion, they will also give a relative afferent pupillary defect because you're affecting the source. And this is extremely important. A retinal detachment will give a relative afferent pupillary defect. So, you can't just assume that it's optic nerve. Luckily for us, those things that also give a relative afferent pupillary defect from a retinal problem cause really bad-looking retinal disease. And you should be able to see it with your direct ophthalmoscope. And if you can't, you definitely will be able to see it with a picture, a photograph, or having an ophthalmologist or optometrist take a look for you. That's really the bedside. You mentioned confrontation visual fields. I still do them, but I am very, very aware that they are not very sensitive. And I have an extremely low threshold to- again, I have something in my office. But if I were a general neurologist, to partner with an eye care specialist who has an automated visual field perimeter in their office because it is much more likely to pick up a deficit. Confrontation fields. Just remember, one eye at a time. Never two eyes at the same time. They overlap with each other. You're going to miss something if you do two eyes open, so one eye at a time. You check their field against your field, so you better be sure your field in that eye is normal. You probably ought to have an automated perimetry test yourself at some point during your career if you're doing that. And remember that the central thirty degrees is subserved by 90% of our fibers neurologically, so really just testing in the four quadrants around fixation within the central 30% is sufficient. You can present fingers, you don't have to wiggle in the periphery unless you want to pick up a retinal detachment. Dr Berkowitz: You mentioned perimetry. You've also mentioned ocular coherence tomography, OCT, other tests. Sometimes we think about it in these cases, is MRI one of the orbits? When do you decide to pursue one or more of those tests based on your history and exam? Dr Newman: So again, it sort of depends on what's available to you, right? Most neurologists don't have a perimeter and don't have an OCT machine. I think if you're worried that you have an optic neuropathy, since we're just speaking about monocular vision loss at this point, again, these are tests that you should get at an office of an eye care specialist if you can. OCT is very helpful specifically in investigating for a macular cause of central vision loss as opposed to an optic nerve cause. It's very, very good at picking up macular problems that would be bad enough to cause a vision problem. In addition, it can give you a look at the thickness of the axons that are about to become the optic nerve. We call it the peripapillary retinal nerve fiber layer. And it actually can look at the thickness of the layer of the retinal ganglion cells without any axons on them in that central area because the axons, the nerve fiber layer, bends away from central vision. So, we can see the best we can see. And remember these are anatomical measurements. So, they will lag, for the ganglion cell layer, three to four weeks behind an injury, and for the retinal nerve fiber, layer usually about six weeks behind an entry. Whereas the functional measurements, such as visual acuity, color vision, visual fields, will be immediate on an injury. So, it's that combination of function and anatomy examination that makes you all-powerful. You're very much helped by the two together and understanding where one will be more helpful than the other. Dr Berkowitz: Let's say we've gotten to the optic nerve as our localization. Many people jump to the assumption it's the optic nerve, it's optic neuritis, because maybe that's the most common diagnosis we learn in medical school. And of course, we have to sometimes, when we're teaching our students or trainees,  say, well, actually, not all optic nerve disease, optic neuritis, we have to remember there's a broader bucket of optic neuropathy. And I remember, probably I didn't hear that term until residency and thought, oh, that's right. I learned optic neuritis. Didn't really learn any of the other causes of optic nerve pathology in medical school. And so, you sort of assume that's the only one. And so you realize, no, optic neuropathy has a differential diagnosis beyond optic neuritis. Neuritis is a common cause. So how do you think about the “what” once you've localized to the optic nerve, how do you think about that? Figure out what the cause of the optic neuropathy is? Dr Newman: Absolutely. And we've been trying to convince neuro-radiologists when they see evidence of optic nerve T2 hyperintensity, that just means damage to the optic nerve from any cause. It's just old damage, and they should not put in their read consistent with optic neuritis. But that's a pet peeve. Anyway, yes, the piece of tissue called the optic nerve can be affected by any category of pathophysiology of disease. And I always suggest that you run your categories in your head so you don't leave one out. Some are going to be more common to be bilateral involvement like toxic or metabolic causes. Others will be more likely unilateral. And so, you just run those guys. So, in my mind, my categories always are compressive-slash-infiltrative, which can be neoplastic or non-neoplastic. For example, an ophthalmic artery aneurysm pressing on an optic nerve, or a thyroid, an enlarged thyroid eye muscle pressing on the optic nerve. So, I have compressive infiltrative, which could be neoplastic or not neoplastic. I have inflammatory, which can be infectious. Some of the ones that can involve the optic nerve are syphilis, cat scratch disease. Or noninfectious, and these are usually your autoimmune such as idiopathic optic neuritis associated with multiple sclerosis, or MOG, or NMO, or even sarcoidosis and inflammation. Next category for me would be vascular, and you can have arterial versus venous in the optic nerve, probably all arterial if we're talking about causes of optic neuropathy. Or you could have arteritic versus nonarteritic with the vascular, the arteritic usually being giant cell arteritis. And the way the optic nerve circulation is, you can have an anterior ischemic optic neuropathy or a posterior ischemic optic neuropathy defined by the presence of disc edema suggesting it’s anterior, the front of the optic nerve, or not, suggesting that it's retrobulbar or posterior optic nerve. So what category am I- we mentioned toxic, metabolic nutritional. And there are many causes in those categories of optic neuropathy, usually bilateral. You can have degenerative or inherited. And there are causes of inherited optic neuropathies such as Leber hereditary optic neuropathy and dominant optic atrophy. And then there's a group I call the mechanical optic neuropathies. The obvious one is traumatic, and that can happen in any piece of tissue. And then the other two relate to the particular anatomy of the eyeball and the optic nerve, and the fact that the optic nerve is a card-carrying member of the central nervous system. So, it's not really a nerve by the way, it's a tract. Think about it. Anyway, white matter tract. It is covered by the same fluid and meninges that the rest of the brain. So, what mechanically can happen? Well, you could have an elevated intraocular pressure where that nerve inserts. That's called glaucoma, and that would affect the front of the optic nerve. Or you can have elevated intracranial pressure. And if that's transmitted along the optic nerve, it can make the front of the optic nerve swell. And we call that specifically papilledema, optic disk edema due specifically to raised intracranial pressure. We actually even can have low intraocular pressure cause something called hypotony, and that can actually even give an optic neuropathy the swelling of the optic nerve. So, these are the mechanical. And if you were to just take that list and use it for any piece of tissue anywhere, like the heart or the kidney, you can come up with your own mechanical categories for those, like pericarditis or something like that. And then all those other categories would fit. But of course, the specific causes within that pathophysiology are going to be different based on the piece of tissue that you have. In this case, the optic nerve. Dr Berkowitz: In our final moments here, we've talked a lot about the approach to monocular visual loss. I think most neurologists, once we find a visual field defect, we breathe a sigh of relief that we know we're in our home territory here, somewhere in the visual task base that we've studied very well. I'm not trying to distinguish ocular causes amongst themselves or ocular from optic nerve, which can be very challenging at the bedside. But one topic you cover in your article, which I realized I don't really have a great approach to, is transient binocular visual loss. Briefly here, since we're running out of time, what's your approach to transient binocular visual loss?  Dr Newman: We assume with transient binocular vision loss that we are not dealing with a different experience in each eye, because if you have a different experience in each eye, then you're dealing with bilateral eyeball or optic nerve. But if you're having the same experience in the two eyes, it's equal in the two eyes, then you're located. You're located, usually, retro chiasmally, or even chiasm if you have pituitary apoplexy or something. So, all of these things require imaging, and I want to take one minute to talk about that. If you are sure that you have monocular vision loss, please don't get a brain MRI without contrast. It's really useless. Get a orbital MRI with contrast and fat suppression techniques if you really want to look at the optic nerve. Now, let's say you you're convinced that this is chiasmal or retrochiasmal. Well then, we all know we want to get a brain MRI---again, with and without contrast---to look specifically where we could see something. And so, if it's persistent and you have a homonymous hemianopia, it's easy, you know where to look. Be careful though, optic track can fool you. It's such a small little piece, you may miss it on the MRI, especially in someone with MS. So really look hard. There's very few things that are homonymous hemianopias MRI negative. It may just be that you didn't look carefully enough. And as far as the transient binocular vision loss, again, remember, even if it's persistent, it has to be equal vision in the two eyes. If there's inequality, then you have a superimposed anterior visual pathway problem, meaning in front of the chiasm on the side that's worse. The most common cause of transient binocular vision loss would be a form of migraine. The visual aura of migraine usually is a positive phenomenon, but sometimes you can have a homonymous hemianopic persistent defect that then ebbs and flows and goes away. Usually there's buildup, lasts maybe fifteen minutes and then it goes away, not always followed by a headache. Other things to think of would be transient ischemic attack in the vertebra Basler system, either a homonymous hemianopia or cerebral blindness, what we call cortical blindness. It can be any degree of vision loss, complete or any degree, as long as the two eyes are equal. That should last only minutes. It should be maximum at onset. There should be no buildup the way migraine has it. And it should be gone within less than ten minutes, typically. After fifteen, that's really pushing it. And then you could have seizures. Seizures can actually be the aura of a seizure, the actual ictal phenomenon of a seizure, or a postictal, almost like a todd's paralysis after a seizure. These events are typically bright colors and flashing, and they last usually seconds or just a couple of minutes at most. So, you can probably differentiate them. And then there are the more- less common but more interesting things like hyperglycemia, non-ketonic hyperglycemia can give you transient vision loss from cerebral origin, and other less common things like that. Dr Berkowitz: Fantastic. Although we've talked about many pearls of clinical wisdom here with you today, Dr Newman, this is only a fraction of what we can find in your article with Dr Biousse. We focused here on monocular visual loss and a little bit at the end here on binocular visual loss, transient binocular visual loss. But thank you very much for your article, and thank you very much for taking the time to speak with us today. Again, today I've been interviewing Dr Nancy Newman about her article with Dr Valerie Biousse on the approach to visual loss, which appears in the most recent issue of Continuum on neuro-ophthalmology. Be sure to check out Continuum audio episodes from this and other issues. Thank you so much to our listeners for joining us today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use this link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

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• April 2025 Neuro-ophthalmology Issue With Dr. Valérie Biousse

  In this episode, Lyell K. Jones Jr, MD, FAAN, speaks with Valérie Biousse, MD, who served as the guest editor of the Continuum® April 2025 Epilepsy issue. They provide a preview of the issue, which publishes on April 3, 2025.   Dr. Jones is the editor-in-chief of Continuum: Lifelong Learning in Neurology® and is a professor of neurology at Mayo Clinic in Rochester, Minnesota.  Dr. Biousse is a professor in the departments of neurology and ophthalmology, as well as the Reunette Harris Chair of Ophthalmic Research, at Emory University in Atlanta, Georgia.  Additional Resources Read the issue: Neuro-ophthalmology Subscribe to Continuum®: shop.lww.com/Continuum More about the American Academy of Neurology: aan.com  Social Media  facebook.com/continuumcme  @ContinuumAAN  Host: @LyellJ  Guest: @vbiouss  Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about subscribing to the journal, listening to verbatim recordings of the articles, and exclusive access to interviews not featured on the podcast. Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum: Lifelong Learning in Neurology. Today, I'm interviewing Dr Valerie Biousse, who recently served as Continuum's guest editor for our latest issue on neuro-ophthalmology. Dr Biousse is a professor in the departments of neurology and ophthalmology at Emory University in Atlanta, Georgia where she's also the Renette Harris Chair of Ophthalmic Research. Dr Biousse, welcome and thank you for joining us today. Why don't you introduce yourself to our listeners? Dr Biousse: In addition to what you just mentioned, I would like to highlight that I have a French accent because I was born and raised and went to medical school in France in Saint Pete Pierre, where I trained as a neurologist. And I even practiced as a stroke neurologist and a headache specialist in the big university in Paris before I decided to move to the US to pursue my passion, which was really neuro-ophthalmology. And at the time, it was impossible to get a license in the US, so I had to repeat a residency and became an ophthalmologist. And this is what led me where I am today. Dr Jones: We're fortunate that you did that. I'm glad you did all that extra work because your contributions to the field have obviously been magnificent, especially this issue, which I think is an incredibly important topic for neurologists. This is why we include it in the rotation of Continuum topics. We all know the saying that the eyes are the windows to the soul, but for neurologists they are also the windows to the brain. The only part of the CNS that's visible to us is the optic disc. I think in spite of that, I think neurologists, our readers and our listeners would acknowledge the importance of the ophthalmic exam and respect the importance of that aspect of the neurologic exam. It's an area that feels challenging to us, and many of us, even with lots of years of experience, don't always feel very comfortable with this. So, it's a really important topic and I'm glad you have edited this. And let's start off with, you know, as you've reviewed all these articles from, really, the pinnacle experts in their specific topics in neuro-ophthalmology, as you were editing this issue, Dr Biousse, what would you say is the one biggest, most important practice-changing message about neuro-ophthalmology you would want to convey to our listeners? Dr Biousse: I think its technology, advances in technology. Without any doubt. The ophthalmology world cannot evaluate a patient anymore without access to fundus photography, optical coherence tomography (OCT) of the back of the eye, not just the optic nerve, but the retina. These advantages in technology have completely changed the way we practice ophthalmology. The same applies to neuro-ophthalmology. And these techniques can really help neurologists do a basic eye exam. Dr Jones: So, let's get right into that. And I'm glad you started with that because I still feel, even though I've done it thousands of times, I still feel a little fumbly and awkward when I'm trying to examine and fundus through an undilated pupil, right? And so, this is I think where technology has helped us quantitate with, as you mentioned, OCT, but I think from an accessibility perspective, I think nonmydriatic fundus photography is a very interesting tool for neurologists and non-neurologists.  Tell us how, how does that work and how could neurologists implement that in their practice? Dr Biousse: It's a very important tool that of course neurology should be able to use every day. You can take fundus photographs of the back of the eye without dilating the pupil. The quality of the photographs is usually very good. You only have access to what we call the posterior pole of the eye, so the optic nerves and the macula and the vascular arcade. You don't see the periphery of the retina, but in neuro-ophthalmology or neurology you don't need access to the periphery of the retina, so it doesn't matter. What is remarkable nowadays is that we have access to very highly performing fundus cameras which can take pictures through very, very small pupils or in patients of all ages. You can use it on a two-year-old in a pediatric clinic. You can use it on a much older person who may have a cataract or other eye problems. And what's really new and what this issue highlights is that it's not just that we can take pictures of the back of the eye, we can also perform OCT at the same time using the same camera. So, that's really a complete game changer for neurologists. Dr Jones: And that's extremely helpful. If I'm in a neurology clinic and I would like to use this technology, how would I access that? Do I need special equipment? Can I use my smartphone and an app? How would that work in terms of getting the image but also getting an interpretation of it? Dr Biousse: It all depends on what your ultimate goal is. The fundus cameras, they are like regular cameras or like any technology that would allow you to get brain imaging. The more sophisticated, the better the quality of the image, the more expensive they are. You know, that's the difference between a three-tesla MRI and a head CT. You buy a camera that's more expensive, you're going to have access to much easier cameras and to much higher resolution of images, and therefore you're going to be much happier with the results. So, I always tell people be very careful not to get a tool that is not going to give you the quality of images you need or you may make mistakes. You basically have two big sorts of cameras. You have what we call the tabletop cameras, which is a little more bulky camera, a little more expensive camera that's sitting on the table. The table can be on wheels, so you can move the table to the patient or you can move the patient to the table. That's very convenient in a neurology clinic where most patients are outpatient. It works in the emergency department. It's more difficult at bedside in the hospital. Or you can have a handheld camera, which can be sophisticated, a device that just uses a handheld camera or, as you mentioned, a small camera that you place on your smartphone, or even better, a camera that you can attach to some of the marketed direct ophthalmoscopes. In all situations, you need to be able to transfer those images to your electronic medical records so that you can use them. You can do that with all tabletop cameras, most handheld cameras; you cannot do it with your smartphone. So that gives you an idea of what you can use. So yes, you can have a direct ophthalmoscope with a little camera mounted. This is very inexpensive. It is very useful at bedside for the neurologists who do- who see patients every day, or the resident on call. But if you really want to have a reliable tool in clinic, I always recommend that people buy a tabletop camera that's connected to the electronic medical record. Dr Jones: You know, the photos always make it so much more approachable and accessible than the keyhole view that I get with my direct ophthalmoscope in clinic. And obviously the technology and the tools are part of the story, but also, it's access to the expertise. Right? There are not many neuro-ophthalmologists in the world, and getting access to the experts is a challenge, I think, everywhere, everywhere in the world really. When you think about how technology can expand that---and here I'm getting at AI, which I hesitate to bring up because it feels like we talk about AI a lot---are there tools that you think are here now or will be coming soon that will help clinicians, including neurologists, interpret fundus photography or other neuro-ophthalmologic findings, maybe eye movements, to make that interpretation piece a little more accessible? Dr Biousse: Absolutely. It's going to happen. It's not there yet. OK? I always tell people, AI is very important and it's a big part of our future without any doubt. But to use AI you need pictures. To get pictures, you need a camera. And so I tell people, first you start with the camera, you implement the camera, you incorporate the camera in your electronic medical record. Because if you do that, then the pictures become accessible to everyone, including the ophthalmologist who’s maybe offsite and can review the pictures and provide an official interpretation of the pictures to help you. You can also transfer those pictures using secure mode of transfers and not your smartphone text application, which you really don't want to use to transfer medical information. And that's why I insist on the fact that those pictures should definitely appear in the patient's medical record. Otherwise you're going to break HIPAA laws, and that's an issue that comes up quite often. Once you have the pictures in the electronic medical record and once you have the pictures in the camera, you can do three things. You can look at them yourself. And many of my neurology colleagues are very competent at declaring that an optic nerve is normal or an optic nerve is swollen or an optic nerve is pale. And very often that's all we need. You can say, oh, I don't know about that one, and page the ophthalmologist on call, give the patient 's medical record number, have them look at the pictures, provide an interpretation, and that's where you have your answer. And this can be done in real time, live, when you're at bedside, no problem. Or you can use AI as what I call “Diagnostic A.” I always compare it as, imagine if you had a little robot neuro-ophthalmologist in your pocket that you could use at any time by just taking a picture, clicking submit on the AI app. The app will tell you never, it's normal or it's papilledema or it's pale. The app will tell you, the probability of this optic disk of being normal is 99% or the probability that this is papilledema. And when I say papilledema, I mean papilledema from rest intracranial pressure that's incredible as opposed to optic disc edema from an optic neuritis or from an ischemic optic neuropathy. And the app will tell you, the probability that this is papilledema is eighty six percent. The probability that it's normal is zero. The probability that it's another cause of disc edema is whatever. And so, depending on your probability and your brain and your own eyes, because you know how to interpret most fundus photographs, you really can make an immediate diagnosis. So that is not available for clinical use yet because the difficulty with the eye, as you know, is to have it have a deep learning algorithm cleared by the FDA. And that's a real challenge. But many research projects have shown that it can be done. It is very reliable, it works. And we know that such tools can either be either incorporated inside the camera that you use---in which case it's the camera that gives you the answer, which I don't think is the ideal situation because you have one algorithm per camera---or you have the algorithm on the Cloud and your camera immediately transfers in a secure fashion the images to the Cloud and you get your answer that way directly in your electronic medical record. We know it can be done because it happens every day for diabetic retinopathy. Dr Jones: Got it. And so, it'll expand, and obviously there has to be a period of developing trust in it, right? Once it's been validated and it becomes something that people use. And I get the sense that this isn't going to replace the expertise of the people that use these tools or people in neuro-ophthalmology clinics. It really will just augment. Is that a fair statement? Dr Biousse: Absolutely. Similar to what you get when you do an EKG. The EKG machine gives you a tentative interpretation, correct? And when the report is “it's normal,” you really can trust it, it's normal. But when it says it's not normal, this is when you look at it and you ask for a cardiology consultation. That's usually what happens. And so, I really envision such AI tools as, “it's normal,” in which case you don't need a consultation. You don't need to get an ophthalmology consultation to be sure that there is no papilledema in a patient with headache, in a patient with possible cerebrospinal fluid shunt malfunction. You don't need it because if the AI tool tells you it's normal, it's normal. When it's not normal, you still need the expertise of the ophthalmologist or the neuro-ophthalmology. The same applies to the diagnosis of eye movement. So that's a little more difficult to implement because, as you know, to have an AI algorithm, you need to have trained the algorithm with many examples. We have many examples of pathology of the back of the eyes, because that's what we do. We take pictures every day and there are databases of pictures, there are banks of pictures. But how many examples do we have of abnormal line movement in myasthenia, of videos or downbeat nystagmus? You know, even if we pulled all our collections together, we would come up with what, two hundred examples of downbeat nystagmus around the world? That's not enough to train an AI system, and that's why most of the research on eye movement right now is devoted to creating algorithm that mimic abnormal eye movements so that we can make them and then train algorithm which job will be to diagnose the abnormal eye movement. There's an extra difficult step, it's actually quite interesting. But it's going to happen. You would be able to have the patient look at the camera on the computer and get a report about “it’s normal” or “the saccades, whatever, are not normal. It's most likely an internucleosomal neuralgia” or “it is downbeat nystagmus.” And that's not, again, science fiction. There are very good groups right now working on this. Dr Jones: That's really fascinating, and that- you anticipated my next question, which is, I think neurologists understand the importance of the ocular motor exam from a localizing perspective, but it's also complex and challenging. And I think that's certainly an area of potential growth. And you make a good point that we need some data to train the models. And until we have these tools, Dr Biousse, that will sort of democratize and provide access through technology to diagnosis and, you know, ultimately management of neuro-ophthalmology disorders, we know that there are gaps in the care of these patients right now in the modern day. In your own practice, in your own work at Emory, what do you see as the biggest gap in practice in caring for these patients?  Dr Biousse: I think there is a lack of confidence amongst many neurologists regarding their ability to perform a basic eye exam and provide a reliable report of their finding. And the same applies to most ophthalmologists. And that's very interesting because we have, often, a large cohort of patients who are in between the two specialties and are getting a little bit lost. The ophthalmologist doesn't know what to do. The neurologist usually knows what to do, but he's not completely sure that it's the right thing to do. And that's where the neuro-ophthalmologist comes in. And when you have a neuro-ophthalmologist right there, it's fantastic, okay? We bridge the two specialties, and we often just translate what the ophthalmologist said to the neurologist or what the neurologist said to the ophthalmologist and suddenly everything becomes clear. But unfortunately, there are not enough neuro-ophthalmologists. There is a definite patient access issue even when there is a neuro-ophthalmologist because not only is there a coverage heterogeneity in the country and in the world, but then everybody is too busy to be able to see a patient right away. And so, this gap impairs the quality of patient care. And this is why despite all this technology, despite the future, despite AI, we teach ophthalmologists and neurologists how to do a neuro-op examination, how to use it for localization, how to use it to increase the value and the power of a good neurologic examination so that nothing is missed. And I'm taking a very simple example. Neurologists see patients with headaches all the time. The vast majority of those headaches are benign headaches. 90% of headache patients are either migraine or tension headache or analgesic abuse headaches, but they are not secondary headache that are life threatening or neurologically threatening. If the patient has papilledema, it's a huge retina that really should prompt immediate workup, immediate prevention of vision loss with the help of the ophthalmologist. And unfortunately, that's often delayed because the patients with headaches do not see eye doctors. They see their primary care providers who does not examine the back of the eye, and then they reach neurology sometimes too late. And when the neurologist is comfortable with the ophthalmoscope, then the papilledema is identified. But when the neurologist is not comfortable with the ophthalmoscope, then the patient is either misdiagnosed or sent to an eye care provider who makes the diagnosis. But there is always a delay in care. You know, most patients end up with a correct diagnosis because people know what to do. But the problem is the delay in appropriate care in those patients. And that's where technology is a complete life-changing experience. And, you know, I want to highlight that I am not blaming neurologists for not looking at the back of the eye with a direct ophthalmoscope without pharmacologic dilation of the pupil. It is not possible to do that reliably. The first thing I learned when I transitioned from a neurologist to an ophthalmologist is that no eye care provider ever attempts to look at the back of the eyes without dilating the pupils because it's too hard. Why do we ask neurologists to do it? It's really unfair, correct? And then the ophthalmoscope is such an archaic tool that gives only a very small portion of the back of the eye and is extraordinarily difficult to use. It's really not fair. And so, until we give the appropriate tools to neurologists, I don't think we should complain about neurologists not being reliable when they look at the back of the eye. It's a major issue.  Dr Jones: I appreciate you giving us some absolution there. I don't think we would ask neurologists to check reflexes but then not give them a reflex hammer, right? So maybe that's the analogy to not dilating the pupil. So, for you and your practice, in our closing minutes here, Dr Biousse, what's the most rewarding thing for you in neuro-ophthalmology? What do you find most rewarding in the care of these patients?  Dr Biousse: Well, I think the most rewarding is the specialty itself. I'm a neurologist at heart. This is where my heart belongs. What's great about those neuro-ophthalmology patients is that it is completely unpredictable. They are unpredictable. They can have anything. I am super specialized because I'm a neuro-ophthalmologist, but I am a general neurologist and I see everything in neurology. So my clinic days are fascinating. I never know what's going to happen. So that's, I think, the most rewarding part of my job as an neuro-ophthalmologist. I'm having fun every day because it's never the same, I never know what's going to happen. But at the same time, we are so useful to those patients. When you use the neuro-ophthalmologic examination, you really can provide exquisite localization of the disease. You're better than the best of the MRIs. And when you know the localization, your differential diagnosis is always right, always correct, and you can really help patients. And then I want to highlight one point that we made sure was covered in this issue of Continuum, which is the symptomatic treatment of patients who have visual disturbances from neurologic disorders. You know, a patient with chronic diplopia is really disabled. A patient with decreased vision cannot function. And being able to treat the diplopia and provide the low vision resources to those patients who do not see well is extremely important for the quality of life of our patients with neurologic disorders. When you don't walk well, if you don't see well, you fall. When you're cognitively impaired, if you don't see well, you are very cognitively impaired. It makes everything worse. When you see double, you cannot function. When you have a homonymous anopia, you should not drive. And so, there is a lot of work in the field of rehabilitation that can greatly enhance the quality of life of those patients. And that really covers the entire field of neurology and is very, very important. Dr Jones: Clearly important work, and very exciting. And your enthusiasm is contagious, Dr Biousse. I can see how much you enjoy this work. And it comes through, I think, in this interview, but I think it also comes through in the articles and the experts that you have. And I'd like to thank you again for joining us today for a great discussion of neuro-ophthalmology. I learned a lot, and hopefully our listeners did too.  Dr Biousse: Thank you very much. I really hope you enjoyed this issue. Dr Jones: Again, we've been speaking with Dr Valerie Biousse, guest editor of Continuum's most recent issue on neuro-ophthalmology. Please check it out, and thank you to our listeners for joining today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in depth and clinically relevant information important for neurology practitioners. Use this link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

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  24:17
• Diversity and Underserved Patient Populations in Epilepsy With Dr. Dave Clarke

  Despite advances in epilepsy management, disparities and lack of inclusion of many people with epilepsy are associated with increased morbidity and mortality. Improving awareness and promoting diversity in research participation can advance treatment for underserved populations and improve trust. In this episode, Teshamae Monteith, MD, PhD, FAAN speaks Dave F. Clarke, MBBS, FAES, author of the article “Diversity and Underserved Patient Populations in Epilepsy,” in the Continuum® February 2025 Epilepsy issue. Dr. Monteith is a Continuum® Audio interviewer and an associate editor of Continuum® Audio and an associate professor of clinical neurology at the University of Miami Miller School of Medicine in Miami, Florida. Dr. Clarke is the Kozmetsky Family Foundation Endowed Chair of Pediatric Epilepsy and Chief or Comprehensive Pediatric Epilepsy Center, Dell Medical School at the University of Texas at Austin in Austin, Texas. Additional Resources Read the article: Diversity and Underserved Patient Populations in Epilepsy Subscribe to Continuum: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @HeadacheMD Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum, the premier topic-based neurology clinical review and CME journal from the American Academy of Neurology. Thank you for joining us on Continuum Audio, which features conversations with Continuum's guest editors and authors who are the leading experts in their fields. Subscribers to the Continuum Journal can read the full article or listen to verbatim recordings of the article and have access to exclusive interviews not featured on the podcast. Please visit the link in the episode notes for more information on the article, subscribing to the journal, and how to get CME. Dr Monteith: This is Dr Teshamae Monteith. Today I'm interviewing Dr Dave Clarke about his article on diversity and underserved patient populations in epilepsy, which appears in the February 2025 Continuum issue on epilepsy. So why don't you introduce yourself to our audience? Dr Clarke: Sure. My name is Dr Dave Clarke, as alluded to. I'm presently at the University of Texas in Austin, originating from much farther south. I'm from Antigua, but have been here for quite a while working within the field in epilepsy surgery, but more and more getting involved in outreach, access to care, and equity of healthcare in epilepsy. Dr Monteith: And how did you get involved in this kind of work? Dr Clarke: That's an amazing question. You know, I did it in a bit of a inside out fashion. I initially started working in the field and trying to get access to persons in the Caribbean that didn't have any neurological care or investigative studies, but very quickly realized that persons around the corner here in Texas and wherever I’ve worked have had the exact same problems, getting access via fiscal or otherwise epilepsy care, or geographically getting access, with so few having neurologists close at hand. Therefore, I started working both on a regional, national, and it transcended to a global scale. Dr Monteith: Wow, so you're just everywhere. Dr Clarke: Well, building bridges. I've found building bridges and helping with knowledge and garnering knowledge, you can expand your reach without actually moving, which is quite helpful. Dr Monteith: Yeah. So why don't you tell us why you think this work is so important in issues of diversity, underserved populations, and of course, access to epilepsy care? Dr Clarke: Sure, not a problem. And I think every vested person in this can give you a different spiel as to why they think it's important. So, I'll add in a few facts pertaining to access, but also tell you about why I think personally that it's not only important, but it will improve care for all and improve what you believe you could do for a patient. Because the sad thing is to have a good outcome in the United States presently, we have over three hundred epilepsy centers, but they have about eight or nine states that don't have any epilepsy centers at all. And even within states themselves, people have to travel up to eight hours, i.e., in Texas, to get adequate epilepsy care. So that's one layer. Even if you have a epilepsy center around the corner, independent of just long wait times, if you have a particular race or ethnicity, we've found out that wait may be even longer or you may be referred to a general practitioner moreso than being referred to an epilepsy center. Then you add in layers of insurance or lack thereof, which is a big concern regardless of who you are; poverty, which is a big concern; and the layers just keep adding more. Culture, etcetera, etcetera. If you could just break down some of those barriers, it has been shown quite a few years ago that once you get to an epilepsy center, you can negate some of those factors. You can actually reduce time to access and you can improve care. So, that's why I'm so passionate about this, because something could potentially be done about it. Dr Monteith: That's cool. So, it sounds like you have some strategies, some strategies for us. Dr Clarke: Indeed. And you know, this is a growth and this is a learning curve for me and will be for others. But I think on a very local, one-to-one scale, the initial strategy I would suggest is you have to be a good listener. Because we don't know how, when, where or why people are coming to us for their concerns. And in order to judge someone, if they may not have had a follow-up visit or they may not have gotten to us after five medications, the onus may not have been on that person. In other words, as we learned when we were in medical school, history is extremely important, but social history, cultural history, that's also just as important when we're trying to create bridges. The second major thing that we have to learn is we can't do this alone. So, without others collaborating with us outside of even our fields, the social worker who will engage, the community worker who will discuss the translator for language; unless you treat those persons with respect and engage with those persons to help you to mitigate problems, you'll not get very far. And then we'll talk about more, but the last thing I'll say now is they have so many organizations out there, the Institute of Medicine or the International League Against Epilepsy or members of the American Epilepsy Society, that have ways, ideas, papers, and articles that can help guide you as to how better mitigate many of these problems. Dr Monteith: Great. So, you already mentioned a lot of things. What are some things that you feel absolutely the reader should take away in reading your article? You mentioned already listening skills, the importance of interdisciplinary work, including social work, and that there are strategies that we can use to help reduce some of this access issues. But give me some of the essential points and then we'll dive in. Dr Clarke: OK. I think first and foremost we have to lay the foundation in my mind and realize what exactly is happening. If you are Native American, of African descent, Hispanic, Latinx, geographically not in a region where care can be delivered, choosing one time to epilepsy surgery may be delayed twice, three, four times that of someone of white descent. If you are within certain regions in the US where they may have eight, nine, ten, fourteen epilepsy centers, you may get to that center within two to three years. But if you're in an area where they have no centers at all, or you live in the Dakotas, it may be very difficult to get to an individual that could provide that care for you. That's very, very basic. But a few things have happened a few years ago and even more recently that can help. COVID created this groundswell of ambulatory engagement and ambulatory care. I think that can help to mitigate time to get into that person and improving access. In saying that, there are many obstacles to that, but that's what we have to work towards: that virtual engagement and virtual care. That would suggest in some instances to some persons that it will take away the one-to-one care that you may get with persons coming to you. But I guarantee that you will not lose patients because of this, because there's too big a vacuum. Only 22% of persons that should actually get to epilepsy centers actually get to epilepsy centers. So, I think we can start with that foundation, and you can go to the article and learn a lot more about what the problems are. Because if you don't know what the problems are, you can't come up with solutions. Dr Monteith: Just give us a few of the most persistent inequities and epilepsy care? Dr Clarke: Time to seeing a patient, very persistent. And that's both a disparity, a deficiency, and an inequity. And if you allow me, I'll just explain the slight but subtle difference. So, we know that time to surgery in epilepsy in persons that need epilepsy surgery can be as long as seventeen years. That's for everyone, so that's a deficiency in care. I just mentioned that some sociodemographic populations may not get the same care as someone else, and that's a disparity between one versus the other. Health equity, whether it be from NIH or any other definition, suggests that you should get equitable care between one person and the other. And that brings in not only medical, medicolegal or potential bias, that we may have one person versus the other. So, there's a breakdown as to those different layers that may occur. And in that I'm telling you what some of the potential differences are. Dr Monteith: And so, you mentioned, it comes up, race and ethnicity being a major issue as well as some of the geographic factors. How does that impact diagnosis and really trying to care for our patients? Dr Clarke: So again, I'm going to this article or going to, even. prior articles. It has been shown by many, and most recently in New Jersey, that if you're black, Hispanic, Latin- Latinx, it takes you greater than two times the time to surgery. Reduced time to surgery significantly increases morbidity. It potentially increases mortality, as has been shown by a colleague of mine presently in Calgary. And independent of that, we don't look at the other things, the other socially related things. Driving, inability to work, inability to be adequately educated, the stigma related to that in various cultures, various countries. So, that deficit not only increased the probability of having seizures, but we have to look at the umbrella as to what it does. It significantly impacts quality of life of that individual and, actually, the individuals around them. Dr Monteith: So, what are some of these drivers, and how can we address them, or at least identify them, in our clinic? Dr Clarke: That's a question that's rather difficult to answer. And not because there aren't ideas about it, but there’s actually mitigating those ideas or changing those ideas we're just presently trying to do. Although outlines have been given. So, in about 2013, the federal government suggested outlines to improve access and to reduce these inequities. And I'll just give you a few of them. One of those suggestions was related to language and having more improved and readily available translators. Something simple, and that could actually foster discussions and time to better management. Another suggestion was try to train more persons from underserved populations, persons of color. Reason being, it has been shown in the social sciences and it is known in the medical sciences that, if you speak to a person of similar culture, you tend to have a better rapport, you tend to be more compliant, and that track would move forward, and it reduces bias. Now we don't have that presently, and I'm not sure if we'll have that in the near future, although we're trying. So then, within your centers, if you have trainings on cultural sensitivity, or if you have engagements and lectures about how you can engage persons from different populations, those are just some very simple pearls that can improve care. This has been updated several times with the then-Institute of Medicine in 2012, 2013, they came out with, in my mind, a pretty amazing article---but I'm very biased---in which they outline a number of strategic initiatives that could be taken to improve research, improve clinical care, improve health equity through health services research, to move the field forward, and to improve overall care. They updated this in 2020, and it's a part of the 2030 federal initiative not only for epilepsy, but to improve overarching care. All of this is written in bits and pieces and referenced in the article. To add icing on top, the World Health Organization, through advocacy of neurological groups as well as the International League Against Epilepsy and the AES, came out with the Intersectoral Action Plan on Epilepsy and Other Neurological Diseases, which advocates for parallel improvement in overall global care. And the United States have signed on to it, and that have lit a fire to our member organizations like the American Epilepsy Society, American Academy of Neurology, and others, trying to create initiatives to address this here. I started off by saying this was difficult because, you know, we have debated epilepsy care through 1909 when the International League against Epilepsy was founded, and we have continually come up with ways to try and advance care. But this have been the most difficult and critical because there's social dynamics and social history and societal concerns that have negated us moving forward in this direction. But fortunately, I think we're moving in that direction presently. That's my hope. And the main thing we have to do is try to sustain that. Dr Monteith: So, you talked about the importance of these global initiatives, which is huge, and other sectors outside of neurology. Like for example, technology, you spoke about telemedicine. I think you were referring to telemedicine with COVID. What other technologies that are more specific to the field of epilepsy, some of these monitorings that maybe can be done? Dr Clarke: I was just going to just going to jump on that. Thank you so much for asking. Dr Monteith: I have no disclosures in this field. I think it's important and exciting to think how can we increase access and even access to monitoring some of these technologies. That might be expensive, which is another issue, but…. Dr Clarke: So, the main things in epilepsy diagnosis and management: you want to hear from the patient history, you want to see what the seizures look like, and then you want to find ways in which to monitor those seizures. Hearing from the patient, they have these questionnaires that have been out there, and this is local, regional, global, many of them standardized in English and Spanish. Our colleagues in Boston actually created quite a neat one in English and Spanish that some people are using. Ecuador has one. We have created someone- something analogous. And those questionnaires can be sent out virtually and you can retrieve them. But sometimes seeing is believing. So, video uploads of seizures, especially the cell phone, I think has been management-changing for the field of epilepsy. The thing you have to do however, is do that in a HIPAA-compliant way. And several studies are ongoing. In my mind, one of the better studies here was done on the East Coast, but another similar study, to be unnamed, but again, written out in the articles. When you go into these apps, you can actually type in a history and upload a video, but the feed is not only going to you, it may be going to the primary care physician. So, it not only helps in one way in you educating the patient, but you educate that primary care physician and they become extenders and providers. I must add here my colleagues, because we can't do without them. Arguably in some instances, some of the most important persons to refer patients, that's the APPs, the PAs and the nurse practitioners out there, that help to refer patients and share patients with us. So, that's the video uploads they're seeing. But then the other really cool part that we're doing now is the ambulatory world of EEGs. Ceribell, Zeto, to name of few, in which you could potentially put the EEG leads on persons with or without the EEG technologist wirelessly and utilize the clouds to review the EEGs. It's not perfect just yet, but that person that has to travel eight hours away from me, if I could do that and negate that travel when they don't have money to pay for travel or they have some potential legal issues or insurance-related issues and I could read the EEG, discuss with them via telemedicine their care, it actually improves access significantly. I'm going to throw in one small twist that, again, it’s not perfect. We're now trying to monitor via autonomic features, heart rate movement and others, for seizures and alert family members, parents, because although about 100,000 people may be affected with epilepsy, we're talking about 500,000 people who are also affected that are caregivers, affiliates, husbands, wives, etcetera. Just picture it: you have a child, let's say three, four years old and every time they have a seizure- or not every time, but 80% of times when they have a seizure, it alerts you via your watch or it alerts you in your room. It actually gives that child a sense of a bit more freedom. It empowers you to do something about it because you can understand here. It potentially negates significant morbidity. I won't stretch it to say SUDEP, but hopefully the time will come when actually it can prevent not only morbidity, but may prevent death. And I think that's the direction we are going in, to use technology to our benefit, but in a HIPAA-compliant way and in a judicious way in order to make sure that we not only don't overtreat, but at the end of the day, we have the patient as number one, meaning everything is vested towards that patient and do no harm. Dr Monteith: Great. One thing you had mentioned earlier was that there are even some simple approaches, efficiency approaches that we can use to try and optimize care for all in our clinics. Give me what I need to know, or do. Give me what I need to do. Dr Clarke: Yeah, I'll get personal as to what we're trying to do here, if you don't mind. The initial thing we did, we actually audited care and time to care delivery. And then we tried to figure out what we could do to improve that access and time to care, triaging, etcetera. A very, very simple thing that can be done, but you have to look at costs, is to have somebody that actually coordinates getting persons in and out of your center. If you are a neurologist that works in private practice, that could potentially be a nurse being associated directly one-and-one with one of the major centers, a third- or fourth-level center. That coordination is key. Educate your nurses about epilepsy care and what the urgent situations are because it will take away a lot of your headache and your midnight calls because they'll be able to know what to do during the day. Video uploads, as I suggested, regardless of the EMR that you have, figure out a way that a family could potentially send a video to you, because that has significantly helped in reducing investigative studies. Triaging appropriately for us to know what patients we can and cannot see. Extenders has helped me significantly, and that's where I’ll end. So, as stated, they had many neurologists and epileptologists, and utilizing appropriately trained nurse practitioners or residents, engaging with them equally, and/or social workers and coordinators, are very helpful. So hopefully that's just some low-hanging fruit that can be done to improve that care. Dr Monteith: So why don't you give us some of your major takeaways to how we can improve epilepsy care for all people? Dr Clarke: I've alluded to some already, but I like counts of threes and fives. So, I think one major thing, which in my mind is a major takeaway, is cultural sensitivity. I don't think that can go too far in improving care of persons with epilepsy. The second thing is, if you see a patient that have tried to adequately use medications and they're still having seizures, please triage them. Please send them to a third- or fourth-level epilepsy center and demand that that third- or fourth-level epilepsy center communicate with you, because that patient will eventually come back and see you. The third thing---I said three---: listen to your patients. Because those patients will actually help and tell you what is needed. And I'm not only talking about listening to them medication-wise. I know we have time constraints, but if you can somehow address some of those social needs of the patients, that will also not only improve care, but negate the multiple calls that you may get from a patient. Dr Monteith: You mentioned a lot already. This is really wonderful. But what I really want to know is what you're most hopeful about. Dr Clarke: I have grandiose hopes, I'll tell you. I'll tell you that from the beginning. My hope is when we look at this in ten years and studies are done to look at equitable care, at least when it comes to race, ethnicity, insurance, we'll be able to minimize, if not end, inequitable care. Very similar to the intersectoral action plan in epilepsy by 2030. I'll tell you something that suggests, and I think it's global and definitely regional, the plan suggests that 90% of persons with epilepsy should know about their epilepsy, 80% of persons with epilepsy should be able to receive appropriate care, and 70% of persons with epilepsy should have adequately controlled epilepsy. 90, 80, 70. If we can get close to that, that would be a significant achievement in my mind. So, when I'm chilling out in my home country on a fishing boat, reading EEGs in ten years, if I can read that, that would have been an achievement that not necessarily I would have achieved, but at least hopefully I would have played a very small part in helping to achieve. That's what I think. Dr Monteith: Awesome. Dr Clarke: I appreciate you asking me that, because I've never said it like that before. In my own mind, it actually helped with clarity. Dr Monteith: I ask great questions. Dr Clarke: There you go. Dr Monteith: Thank you so much. I really- I really appreciate your passion for this area. And the work that you do it's really important, as you mentioned, on a regional, national, and certainly on a global level, important to our patients and even some very simple concepts that we may not always think about on a day-to-day basis. Dr Clarke: Oh, I appreciate it. And you know, I'm always open to ideas. So, if others, including listeners, have ideas, please don't hesitate in reaching out. Dr Monteith: I'm sure you're going to get some messages now. Dr Clarke: Awesome. Thank you so much. Dr Monteith: Thank you. I've been interviewing Dr Dave Clarke about his article on diversity and underserved patient populations in epilepsy, which appears in the most recent issue of Continuum on epilepsy. Be sure to check out Continuum Audio episodes from this and other issues. And thank you to our listeners for joining today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use this link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

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  28:16
• A Multidisciplinary Approach to Nonepileptic Events With Dr. Adriana Bermeo-Ovalle

  Nonepileptic events are prevalent and highly disabling, and multiple pathophysiologic mechanisms for these events have been proposed. Multidisciplinary care teams enable the efficient use of individual expertise at different treatment stages to address presentation, risk factors, and comorbidities.   In this episode, Kait Nevel, MD, speaks with Adriana C. Bermeo-Ovalle, MD, an author of the article “A Multidisciplinary Approach to Nonepileptic Events,” in the Continuum® February 2025 Epilepsy issue. Dr. Nevel is a Continuum® Audio interviewer and a neurologist and neuro-oncologist at Indiana University School of Medicine in Indianapolis, Indiana. Dr. Bermeo-Ovalle is a professor and vice-chair for Faculty Affairs in the Department of Neurological Sciences at Rush University Medical Center in Chicago, Illinois. Additional Resources Read the article: A Multidisciplinary Approach to Nonepileptic Events Subscribe to Continuum: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @IUneurodocmom Full episode transcript available here Dr. Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum, the premier topic-based neurology clinical review and CME journal from the American Academy of Neurology. Thank you for joining us on Continuum Audio, which features conversations with Continuum's guest editors and authors who are the leading experts in their fields. Subscribers to the Continuum Journal can read the full article or listen to verbatim recordings of the article and have access to exclusive interviews not featured on the podcast. Please visit the link in the episode notes for more information on the article, subscribing to the journal, and how to get CME. Dr Nevel: Hello, this is Dr Kait Nevel. Today I'm interviewing Dr Adriana Bermeo about her article on a multidisciplinary approach to nonepileptic events, which she wrote with Dr Victor Petron. This article appears in the February 2025 Continuum issue on epilepsy. Welcome to the podcast, and please introduce yourself to our audience. Dr Bermeo-Ovalle: Hello Dr Neville, it's a pleasure to be here. Thank you very much for inviting me. My name is Adriana Bermeo and I'm an adult epileptologist at Rush University Medical Center in Chicago, and I am also the codirector of the NEST clinic, which is a treatment clinic for patients with nonepileptic seizures within our level four epilepsy center. Dr Nevel: Wonderful. Well, thank you so much for being here, and I can't wait to talk to you about your article and learn a little bit about NEST, maybe, during our conversation, and how you approach things. To start us off talking about your article today, could you share with us what you think is the most important takeaway from your article for the practicing neurologist? Dr Bermeo-Ovalle: Wonderful. There's some messages that I would like people to get from working with patients with functional neurologic disorders in general. The first one is that functional neurologic disorders are very common in presentation in the neurologic clinic, almost no matter what your practice of self-specialty care is. The second is that for people who treat patients primarily with seizures or epilepsy, they account for between 5 to 10% of our patients in the clinic, but about 30% of our patients in our epilepsy monitoring unit because the seizures typically do not respond to anti-seizure medication management. Also, that in order to diagnose them, you don't need to have a neuropsychological stress already be available for the patient or the clinician. And the most important thing is that there are available treatments for these patients and that there are options that we can offer them for them to have less seizures and to be more integrated to whatever activities they want to get integrated. Dr Nevel: Wonderful. What do you think a practicing neurologist might find surprising after reading your article? Dr Bermeo-Ovalle: I think still many neurologists feel very hopeless when they see patients with these conditions. They do not have very good answers right away for the patients, which is frustrating for the neurologist. And they don't think there's too much they can do to help them other than send them somewhere else, which is very difficult for the neurologist and is crushing to the patients to see these doctors that they're hoping to find answers to and then just find that there's not much to do. But what I want neurologists to know is that we are making strides in our understanding of the condition and that there are effective treatments available. And I hope that after reading this and engaging with this conversation, they will feel curious, even hopeful when they see the next patient in the clinic. Dr Nevel: Yeah, absolutely. I find the history of nonepileptic seizures really interesting and I enjoyed that part of your article. How has our understanding of nonepileptic seizures evolved over the centuries, and how does our current understanding of nonepileptic seizures inform the terminology that we use? Dr Bermeo-Ovalle: Yeah. The way we name things and the way we offer treatment goes along to how we understand things. So, the functional seizures and epileptic seizures were understood in ancient times as possession from the spirits or the demons or the gods, and then treatments were offered to those kind of influences and that continues to happen with functional seizures. So, we go through the era when this was thought to be a women-only condition that was stemming from their reproductive organs and then treatments accordingly were presented. And later on with Charcot and then Freud, they evolved to even conversion disorders, which is one understanding the most conversion disorders, which is one of the frameworks where this condition has been treated with psychotherapy, psychoanalytic psychotherapy. And in our current understanding, we understand functional neurologic disorders in general as a more like a connection, communication network disorder, between areas of the brain that modulate emotional processing and movement control. And therefore, our approach these days is much more geared towards rehabilitation. You know, I think that's the evolution of thinking in many different areas. And as we learn more, we will be acquiring more tools to help our patients. Dr Nevel: Yeah, great. Thanks so much for that answer. Just reading the historical information that you have in your article, you can imagine a lot of stigma with this diagnosis too over time, and that- I think that that's lessening. But I was wondering if you could talk about that a little bit. How do we approach that with our patients and loved ones, any stigma that they might feel or perceive from being diagnosed with nonepileptic seizures? Dr Bermeo-Ovalle: Thank you for asking that question. Stigma is actually an important problem even for people living with epilepsy. There's still a lot of misunderstanding of what epilepsy is and how it affects people, and that people living with epilepsy can live normal, healthy lives and do everything they want to do with appropriate treatment. And if a stigma is still a problem with epilepsy, it is a huge problem for patients living with functional neurologic symptoms in general, but particularly with functional seizures or nonepileptic seizures. Because the stigma in this population is even perpetuated by the very people who are supposed to help them: physicians, primary care doctors, emergency room doctors. Unfortunately, the new understanding of this condition has not gotten to everybody. And these patients are often even blamed for their symptoms and for the consequences of their symptoms and of their seizures in their family members, in their job environment, in their community. Living with that is really, really crushing, right? Even people talk about, a lot about malingering. They come back about secondary gain. I can tell you the patients I see with functional seizures gain nothing from having this condition. They lose, often, a lot. They lose employment, they lose ability to drive. They lose their agency and their ability to function normally in society. I do think that the fight- the fighting of stigma is one that we should do starting from within, starting from the healthcare community into our understanding of what these patients go through and what is causing their symptoms and what can we do to help them. So there's a lot of good work to be done. Dr Nevel: Absolutely. And it starts, like you said, with educating everybody more about nonepileptic seizures and why this happens. The neurobiology, neurophysiology of it that you outlined so nicely in your article, I'm going to encourage the listeners to look at Figure 1 and 4 for some really nice visualization of these really complex things that we're learning a lot about now. And so, if you don't mind for our listeners, kind of going over some of the neurobiology and neurophysiology of nonepileptic seizures and what we're learning about it. Dr Bermeo-Ovalle: Our understanding of the pathophysiology of functional neurologic seizure disorder is in its infancy at this point. The neurobiological processes that integrate emotional regulation and our responses to it, both to internal stimuli and to external stimuli and how they affect our ability to have control over our movement---it’s actually amazing that we as neurologists know so little about these very complex processes that the brain do, right? And for many of us this is the reason why we're in neurology, right, to be at the forefront of this understanding of our brain. So, this is in that realm. It is interesting what we have learned, but it's amazing all that we have to learn. There is the clear relationship between risk factors. So, we know patients with functional neurologic symptom disorder and with functional seizures, particularly in many different places in the world with many different beliefs, relationship to their body, to their expression of their body, have this condition no matter how different they are. And also, we know that they have commonalities. For example, traumatic experiences that are usually either very strong traumatic experiences or very pervasive traumatic experiences or recurrent over time of different quality. So, we are in the process of understanding how these traumatic experiences actually inform brain connectivity and brain development that result in this lack of connections between brain areas and the expression of them, and that result in this kind of disorder. I wish I can tell you more about it or that I would understand more about it, but I am just grateful for the work that has been done so that we can understand more and therefore have more to offer to these patients and their families and their communities that are support. Dr Nevel: Yeah, absolutely. That's always the key, and just really exciting that we're starting to understand this better so that we can hopefully treat it better and inform our patients better---and ourselves. Can you talk to us a little bit about the multidisciplinary team approach and taking care of patients with nonepileptic seizures? Who's involved, what does best practice model look like? You have a clinic there, obviously; if you could share with us how your clinic runs in the multidisciplinary approach for care of these patients? Dr Bermeo-Ovalle: The usual experience of patients dealing with functional seizures, because this is a condition that has neurological symptoms and psychiatric symptoms, is that they go to the neurologist and the neurologist does not feel sufficiently able to manage all the psychiatric comorbidities of the condition. So, the patient is sent to psychiatry. The psychiatry really finds themselves very hopeless into handling seizures, which is definitely not their area of expertise, and these patients then being- “ping-ponging” from one to the other, or they are eventually sent to psychotherapy and the psychotherapist doesn't know what they're dealing with. So, we have found with- and we didn't come up with this. We had wonderful support from other institutions who have done- been doing this for a longer time. That bringing all of this specialty together and kind of situating ourselves around the patient so that we can communicate our questions and our discrepancies and our decision between who takes care of what without putting that burden on the patient is the best treatment not only for the patient, who finally feels welcome and not burden, but actually for the team. So that the psychiatrist and the neurologist support the psychotherapist who does the psychotherapy, rehabilitation, mind the program. And we also have the support and the involvement of neuropsychology. So, we have a psychiatrist, a neurologist, social worker, psychotherapist and neuropsychology colleagues. And together we look at the patient from everywhere and we support each other in the treatment of the patient, keeping the patient in the middle and the interest of the patient in the middle. And we have found that that approach has helped our patients the best, but more importantly, makes our job sustainable so that none of us is overburdened with one aspect of the care of the patient and we feel supported from the instances that is not our most comfortable area. So that is one model to do it. There's other models how to do it, but definitely the interdisciplinary care is the way to go so far for the care of patients with functional neurologic symptom disorders and with functional seizures or nonepileptic seizures in particular. Dr Nevel: Yeah, I can see that, that everybody brings their unique expertise and then doesn't feel like they're practicing outside their, like you said, comfort zone or scope of practice. In these clinics---or maybe this happens before the patient gets to this multidisciplinary team---when you've established a diagnosis of nonepileptic seizures, what's your personal approach or style in terms of how you communicate that with the patient and their loved ones? Dr Bermeo-Ovalle: It is important to bring this diagnosis in a positive term. You know, unfortunately the terminology question is still out and there's a lot of teams very invested into how to better characterize this condition and how to- being told that you don't have something is maybe not that satisfying for patients. So, we are still working on that, but we do deliver the diagnosis in positive terms. Like, this is what you have. It's a common condition. It’s shared by this many other people in the world. It's a neuropsychiatric disorder and that's why we need the joint or collaborative care from neurology and psychiatry. We know the risk factors and these are the risk factors. You don't have to have all of them in order to have this condition. These are the reasons why we think this is the condition you have. There is coexisting epilepsy and functional seizures as well. We will explore that possibility and if we get to that conclusion, we will treat these two conditions independently and we- our team is able to treat both of them. And we give them the numbers of our own clinic and other similar clinics. And with that we hope that they will be able to get the seizures under better control and back to whatever is important to them. I tell my trainees and my patients that my goals of care for patients with functional seizures are the same as my patients with epileptic seizures, meaning less seizures, less disability, less medications, less side effects, less burden of the disease. And when we communicate it in that way, patients are very, very open and receptive. Dr Nevel: Right. What do you think is a mistake to avoid? I don't know if “mistake” is necessarily the right word, but what's something that we should avoid when evaluating or managing patients with nonepileptic seizures? What’s something that you see sometimes, maybe, that you think, we should do that differently? Dr Bermeo-Ovalle: I think the opportunity of engaging with these patients is probably the hardest one. Because neurologists have the credibility, they have the relationship, they have- even if they don't have a multi-disciplinary team all sitting in one room, they probably have some of the pieces of this puzzle that they can bring together by collaborating. So, I think that missing the opportunity, telling the patient, this is not what I do or this is not something that belongs to me, you need to go to a mental health provider only, I think is the hardest one and the most disheartening for patients because our patients come to us just like all patients, with hopes and with some information to share with us so that we can help them make sense of it and have a better way forward. We as neurologists know very well that we don't have an answer to all our patients, and we don't offer zero seizures to any of our patients, right? We offer our collaborative work to understand what is going on and a commitment to walk in the right direction so that we are better every day. And I do think wholeheartedly that that is something that we can offer to patients with functional seizures almost in any environment. Dr Nevel: Yeah, absolutely. And using that multidisciplinary approach and being there with your patient, moving forward in a longitudinal fashion, I can see how that's so important. What do you find most challenging and what do you find most rewarding about caring for patients with nonepileptic seizures? Dr Bermeo-Ovalle: The thing that I find more challenging are the systemic barriers that the system still places. We discuss with the patients, what is the right time to go to the emergency room or not? Because the emergency room may be a triggering environment for patients with functional seizures and it may be a place where not everybody is necessarily attuned to have this conversation. Having said that, I never tell any of my patients not to go to the emergency room because I don't know what's happening with them. As a matter of fact, we're getting a lot of information on high mortality rates in patients with functional seizures, and it’s not because of suicide and is probably not related to the seizure. Maybe this is---you know, this is speculation on my part---that is because they get to more severe conditions in other things that are not the functional seizures because they just experienced the healthcare system as very hostile because we are very in many instances. So, navigating that is a little bit difficult, and I try to tell them to have the doctors call me so that I can frame it in a different way and still be there for them. But I can tell you this clinic is the most rewarding clinic of all my clinical activities. And I love with all my heart being an epileptologist and seeing my patients with epilepsy. But the number of times my patients with functional seizures say, nobody had ever explained this to me, nobody had ever validated my experience in front of my family so that I'm not- like, feel guilty myself for having this episode, I can't tell you how many times. And obviously patients who come to the nonepileptic seizure clinic already know that they come to the nonepileptic seizure clinic, so that- you can say it's a selection of patients that are already educated in this condition to come to the clinic. But I would love everybody to know managing this population can be enormously, enormously satisfying and rewarding. Dr Nevel: Especially for, I imagine, patients who have been in and out of the ER, in and out of the hospital, or seen multiple providers and make their way to you. And you're able to explain it in a way that makes sense and hopefully reduces some of that stigma maybe that they have been feeling. Dr Bermeo-Ovalle: And along with that, iatrogenic interventions, unnecessary intubations, unnecessary ICUs; like, so much. And I think, I have no superpower to do that other than understanding this condition in a different way. And by I, I mean all the providers, because I'm not alone in this. There's many, many people doing excellent work in this state. And we just need to be more. Dr Nevel: Yeah, sure. Absolutely. So, on that note, what's next in research, or what do you think will be the next big thing? What's on the horizon in this area? Dr Bermeo-Ovalle: I think the community in the functional neurologic disorder community is really hopeful that more understanding into the neurobiology of this condition will bring more people over and more neurologists willing to take it on. There was an invitation from the NIH, I think, about four or five years ago to submit proposals for research in this area in particular. So, all of those studies must be ongoing. I'm much more a clinician than a researcher myself, but I am looking forward to what all of that is going to mean for our patients. And for- I think there's other opportunities in that further understanding of the clinical manifestations of many other conditions, and for our understanding of our relationship with our patients. I feel we are more attuned to align with a disease that, when the experience of the patient- and with a disease like this, a condition like this one, we have to engage with the personal experience of the patient. What I mean by that is that we are more likely to say,  I'm an epileptologist, I'm an MS doctor, you know, and we engage with that condition. This condition, like, just makes us engaging with the symptom and with the experience of the person. And I think that's a different frame that is real and rounded into the relationship with our patients. So, I think there's so much that we can learn that can change practice in the future. Dr Nevel: Yeah. And as your article, you know, outlines, and you've outlined today during our discussion, that- how important this is for the future, that we treat these patients and help them as much as we can, that comes with understanding the condition better, because wow, I was really surprised reading your article. The mortality associated with this, the healthcare costs, how many people it affects, was just very shocking to me. So, I mean, this is a really important topic, obviously, and something that we can continue to do better in. Wonderful. Well, thank you so much. It's been really great talking to you today. Dr Bermeo-Ovalle: Thank you, Katie, I appreciate it too. Dr Nevel: So again, today I've been interviewing Dr Adriana Bermeo about her article on a multidisciplinary approach to nonepileptic events, which she wrote with Dr Victor Petron. This article appears in the most recent issue of Continuum on epilepsy. Be sure to check out Continuum audio episodes from this and other issues. And thank you to our listeners for joining today.  Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

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  24:05
• Surgical Treatments, Devices, and Nonmedical Management of Epilepsy With Dr. Daniel Friedman

  Many patients with epilepsy are unable to acheive optimal seizure control with medical therapy. Palliative surgical procedures, neurostimulation devices, and other nonpharmalogical treatments can lead to a meaningful reduction in seizures and improved outcomes. In this episode, Teshamae Monteith, MD FAAN, speaks with Daniel Friedman, MD, MSc, author of the article “Surgical Treatments, Devices, and Nonmedical Management of Epilepsy,” in the Continuum® February 2025 Epilepsy issue. Dr. Montieth is a Continuum® Audio interviewer and an associate editor of Continuum® Audio and an associate professor of clinical neurology at the University of Miami Miller School of Medicine in Miami, Florida. Dr. Friedman is a professor (clinical) of neurology at NYU Grossman School of Medicine and Director of NYU Langone Comprehensive Epilepsy Center at NYU Langone Health in New York, New York. Additional Resources Read the article: Surgical Treatments, Devices, and Nonmedical Management of Epilepsy Subscribe to Continuum: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @headacheMD Guest: @dfriedman36  Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum, the premier topic-based neurology clinical review and CME journal from the American Academy of Neurology. Thank you for joining us on Continuum Audio, which features conversations with Continuum's guest editors and authors who are the leading experts in their fields. Subscribers to the Continuum Journal can read the full article or listen to verbatim recordings of the article and have access to exclusive interviews not featured on the podcast. Please visit the link in the episode notes for more information on the article, subscribing to the journal, and how to get CME. Dr Monteith: This is Dr Teshamae Monteith. Today, I'm interviewing Dr Daniel Friedman about his article on surgical treatments, devices, tools, and non-medication management of epilepsy, which appears in the February 2025 Continuum issue on epilepsy. Welcome to the podcast. How are you? Dr Friedman: I'm well, how are you? Dr Monteith: Thank you for your article. Dr Friedman: Thank you for the opportunity to talk today. Dr Monteith: Why don't you introduce yourself? Dr Friedman: So yeah, so I'm Dan Friedman. I am a professor of neurology here at NYU Grossman School of Medicine and I am the director of the NYU Comprehensive Epilepsy Center. I'm primarily an adult neurologist and I treat teens and adults with hard- difficult-to-treat epilepsy, including surgical treatments for epilepsy. Dr Monteith: And I know you see a lot of patients because I did my residency there. And so, when you graduate, you get a lot of it, like I think many, many residents. What inspired you to choose epilepsy as a profession? Dr Friedman: I came to neurology through my interest in neuroscience. I was a neuroscience undergraduate. I was very interested in the brain and brain function. Particularly, I was interested in how neurons communicate and organize to entrain and rhythms and that encode information. And through that interest and through my experiences in the laboratory, I actually became interested in how they do that in pathological circumstances like seizures. And so, I started reading about epilepsy, and then when I started seeing patients with epilepsy, you know, I decided this is the specialty for me for a lot of reasons. One is it combines inpatient and outpatient care. You get to establish long-term relationships with patients. For many of my patients, I'm probably the doctor that they see most often. You see people across the lifespan. And what I'm going to talk about today is for some people, you actually get to cure their disease, which at the time I was coming into neurology was something pretty rare. Dr Monteith: Yeah, that's great. Why don't you tell us, what were you thinking when you started writing the article? What did you set out to do? Dr Friedman: What I really wanted to do is to educate neurologists out there about the options that they have for their patients with epilepsy, especially those with difficult-to-treat or drug-resistant epilepsy, and give them the tools to communicate those options. Especially for them to understand the rationale, why we choose the interventions that we do as epileptologists, how to appropriately refer patients and have them be partners in that discussion with patients and families. One of the things that we have known for a long time is that the time to referral for things like epilepsy surgery is too long. You know, the average patient with drug resistant epilepsy who undergoes epilepsy surgery waits about twenty years. And for patients who could have curative therapy, you know, become seizure free, that's a lot of life years lost. If we can get patients to that potentially life-altering therapy earlier, that'd be great. Dr Monteith: Yeah, that is really impactful as you think about it. So why don't you tell us what the essential points of your article? Dr Friedman: The central point of my article is really that when patients have drug-resistant epilepsy, which means that our available anti-seizure medicines are not controlling their seizures to the degree that they need, there are other treatment options. Some of those are what we call curative, which means that they could stop their seizures entirely; and some of them are palliative, they could reduce the frequency or severity of seizures and improve quality of life and other outcomes. The other thing that I wanted to highlight was, in addition to these types of therapies, there are other tools we have at our disposal that can improve the quality of life and safety of our patients with epilepsy, including devices for seizure monitoring. Dr Monteith: And how do you define drug-resistant epilepsy? I feel like that could be a moving target. Dr Friedman: The International League Against Epilepsy actually set out to define it about a decade ago, and they defined it as patients who fail at least two appropriately selected anti-seizure medicines due to lack of efficacy. Then they're still having ongoing seizures. What does that mean? So, that means that the medicine that was chosen was appropriate for the type of seizures that they have, whether it's focal or generalized, and that it didn't work because of a lack of efficacy and not because of side effects. And we know from multiple studies that once patients fail two medications, the likelihood that the third, fourth, fifth, etcetera, medicine will control their seizures becomes smaller and smaller. It's not impossible, but the rates fall below five percent. And so we call those patients drug-resistant. Dr Monteith: So, it sounds like despite newer therapies, really things haven't changed in ten years. Dr Friedman: Yeah, unfortunately, at least when the concept was first investigated back in 2000 by Quan and Brody, they found that a third of patients were drug-resistant. When they went back in the mid-2010s to relook at these patients, despite the introduction of many new medications, the rate of patients who were drug-resistant was essentially unchanged. There may be therapies that are emerging or in development that may have better odds, but right now we don't really understand what makes people drug resistant and how we can target that. Dr Monteith: But you do raise a good point that this is about efficacy and not tolerability. And at least for some of the newer medications, they're better tolerated. If you stop the medicine because you had some side effect, that might change how that person has classified better-tolerated treatments. Dr Friedman: It's true. And better-tolerated treatments, you can potentially use higher doses. One of the things that is not in the definition of drug-resistant epilepsy, but as a practicing neurologist, we all know, is that the patients have to take the medicine for it to be effective. And unfortunately, they have to take it every day. And if the medicine makes them feel bad, they may choose not to take it, present to you as drug-resistant, when in reality they may be drug-sensitive if you got them on medicine that doesn't make them feel bad. Dr Monteith: So why don't we talk about patients that are ideal candidates for epilepsy surgery? Dr Friedman: The ideal candidates for epilepsy surgery… and I'll start by talking about curative epilepsy surgery, where the goal of the surgery is to make patients seizure-free. The best candidates are patients who have lesional epilepsy, meaning that there is a visible MRI abnormality like a focal cortical dysplasia, hippocampus sclerosis, cavernoma in a part of the brain that is safe to resect, non-eloquent, and where you can safely perform a wide margin of resection around that lesion. It helps if they have few or no generalized tonic-clonic seizures and a shorter duration of epilepsy. So the ideal patient, the patient that if they came to my office, I would say you should get surgery right now, are patients with non-dominant temporal lobe epilepsy of a few years’ duration. So as soon as they've shown that they're not responding to two medicines, those are the ideal patients to say, you would have the most benefit and the least risk from epilepsy surgery. We know from studies that patients with temporal lobe epilepsy do a little better with surgery. We know patients who have a visible lesion on MRI do better with epilepsy surgery. We know that patients who have infrequent secondarily generalized seizures do better. But all patients with drug-resistant epilepsy should be considered for some form of surgery because even if they're not candidates for a curative surgery, there may be some palliative options, whether it's surgical resections that lessen the severity of their seizures or neurostimulation devices that reduce the frequency and severity of seizures. Ideal candidates, the ones that you would push through sooner rather than later, are those who have the likelihood of the best outcomes and the least risk of neurocognitive decline. Dr Monteith: So, you mentioned that there may be other candidates that still benefit, although maybe not ideal. You mentioned neuromodulation. What other interventions are available? Dr Friedman: For patients who are not candidates for resective surgery, there are several neurostimulation options. There's vagus nerve stimulation, which has been around the longest. It is a device that is implanted in- under the skin near the clavicle and has a lead that goes to the left vagus nerve and delivers stimulation, electrical stimulation to the nerve. For reasons we don't fully understand, it can reduce the both the frequency and severity of seizures. Seldom does it make people seizure free, but the reduction in seizure frequency for many patients is associated with improved quality of life, reduced risk of injury, and even reduced rates of SUDEP. We also have two intracranial neurostimulation devices we use for epilepsy. One is the responsive neurostimulator. So, this is a device that- it has leads that are implanted directly into the seizure focus and sense electrocortical brain activity and deliver electrical stimulation to attempt to abort abnormal brain activity. So functioning kind of like a cardiac defibrillator for the heart, but for seizures in the brain. And because these devices have two leads, they can be used to treat people with more than one seizure focus---so up to two---or be used in patients who are not candidates for resection because their seizure focus is in language cortex, motor cortex, things that would be unable to resect. And the RNS has somewhat better efficacy in terms of percent reduction in seizures compared to the VNS, but obviously because it's an intracranial device, it's also a little riskier. It has more potential for neurosurgical adverse effects. There's also a deep brain stimulator for epilepsies, the same exact device that we use to treat movement disorders. We can implant in the thalamus, in either the anterior nucleus of the thalamus or now, for some patients, into the central median nucleus of the thalamus, and deliver open loop stimulation to treat epilepsy and reduce the frequency and severity of seizures as well. Unlike the RNS, you don't have to localize the seizure focus, so you don't need to know exactly where the seizures are coming from. And you could treat patients with multifocal epilepsy with seizures coming from more than two locations or even generalized seizures. Dr Monteith: So, it sounds like there are a lot of options available to patients. I think one of the things I find challenging is when we have patients that may have some cognitive dysfunction, especially in the hospital, and they've had some seizures that are very obvious, but then there are these, maybe, events that you wonder are seizures. So, what is the utility of some of these seizure detection devices? Dr Friedman: The development of seizure detection devices started out primarily with the observation that a majority of cases of sudden unexpected death and epilepsy, or SUDEP, occurred following tonic-clonic seizures. And there was a need to be able to monitor for convulsive seizures, especially that occur at night when people were otherwise unattended. And so, the first generation of devices that were developed came on the market, essentially detected convulsive seizures, and they alerted caregivers nearby who are able to come to the bedside, provide basic seizure first aid, turn people on the side. And theoretically all this---this hasn't been shown in studies---prevents SUDEP. And so, the ones that are currently available on the market are focused on the detection of convulsive seizures, mostly generalized tonic-clonic seizures, but some devices can also detect other seizures with very prominent motor components. What we don't have yet available to us, and what people are working on, are devices that detect nonconvulsive seizures. We know that patients who have focal impaired aware seizures are often amnestic for their seizures. They don't know they had a seizure if family members aren't there to observe them. They may never report them, which makes treating these patients very difficult. How do you quantify disease burden in your headache patients, for instance? You say, how many headache days did you have since we last met in the clinic? Your patients will be able to report on their calendar, this many days. Well, imagine if the patients had no awareness of whether or not they had a headache day. You wouldn't know if your therapy is working or not. In epilepsy, we need those types of devices which can tell us whether patients are having seizures they're unaware of, and that may be more subtle than convulsions. Dr Monteith: Oh, that'd be great for headache, too. You just gave me an idea, but that's the next podcast. So, you mentioned SUDEP, really important. How good are surgical interventions at reducing what we would think the prevalence of SUDEP? Dr Friedman: For me that is one of the primary motivations for epilepsy surgery in patients who are drug-resistant, because we know that if patients who are candidates for epilepsy surgery have high SUDEP rates. Estimates range from six to nine per thousand patients per year. If surgery is successful, their mortality rates go down to the general population level. It literally can be lifesaving for some patients, especially when you're talking about curative epilepsy surgery. But we also know that the biggest driver for SUDEP risk is tonic-clonic seizures and the frequency of those tonic-clonic seizures. So even our palliative interventions, which can reduce the frequency and severity of seizures, may also reduce the risk of SUDEP. So, we know in study- observational studies of patients with VNS and with RNS, for instance, the rates of SUDEP in patients treated with those devices are lower than expected for the drug-resistant epilepsy population. Dr Monteith: Let's talk a little bit about some of these prediction models. And you have a lot of great work in your article, so I don't want to get into all the details, but how do you use that in the real world? Do you communicate that with patients? How do you approach these prediction factors? Dr Friedman: There are two places where, I think, clinical prediction tools for epilepsy surgery have a role. One is, for me, in my clinic where I'm talking to patients about the risks and benefits for surgery, right? You want to be able to accurately communicate the likelihood that the surgery is going to give you the desired outcome. So patients and their families can make educated decisions, be weighing the risks and benefits. I think it's important to be realistic with patients because surgery, like- you know, any surgery is not without risk, both acute risks and long-term risks. You're removing part of the brain, and, you know, every part of the brain is important. That's where I use prediction tools. But I think it's also important for the general neurologist, especially trying to triage which patients you are going to be aggressive with referring to a comprehensive epilepsy center for evaluation. Where you may use your limited time and capital with patients to counsel them on surgical treatments. Where a healthcare system with limited resources prioritizes patients. So, there's a significant need for having prediction tools that only take the input that a general neurologist seeing a patient in the clinic would have at hand. You know, the history, an MRI, an interictal EEG. Dr Monteith: I guess part of that prediction model includes adverse outcomes that you're communicating as well. Dr Friedman: Certainly, for me, when I'm discussing surgery for the patient in front of me, I will use prediction models for adverse outcomes as well that are informed by the kind of surgery we're proposing to do, especially when talking about things like language dysfunction and memory dysfunction after surgery. Dr Monteith: So, you mentioned a lot of great advances, and certainly since I was a resident, which wasn't that long ago. Why don't you tell me how some of these interventions have changed your clinical practice? Dr Friedman: Thinking about epilepsy surgery, like other surgical specialties, there's been a move to more minimally invasive approaches. For instance, when I started as an epilepsy fellow fifteen years ago, sixteen years ago, most of our surgeries involve removing a large portion of the skull, putting electrodes on the brain, doing resections through big craniotomies which were uncomfortable and risky, things like that. We now do our phase two or intracranial EEG monitoring through small burr holes in the brain using robotically placed electrodes. For many of our patients, we can actually treat their epileptic focus with a laser that is targeted through a small catheter and MRI guidance. And patients are usually home in two days with, you know, a lot less discomfort. Dr Monteith: Well, that's great. I didn't expect that one, but I do think that translates to many areas of neurology. Really just this idea of meeting their goals and personalizing their care. My last question is, what out of these advances and what you know about the future of epilepsy, what makes you the most excited and what gives you the most hope? Dr Friedman: I think there are a lot of exciting things in epilepsy. Last count I heard, there's something like over a hundred biotech companies developing epilepsy therapies. So that gives me hope that people are still interested in meeting the unmet needs of patients with epilepsy. And some of these therapies are really novel. For instance, there's a trial of stem cell treatments for drug-resistant temporal lobe epilepsy that's ongoing now, where inhibitory interneuron progenitor cells are implanted in the brain and kind of restore the brain circuit disruptions that we see in some of these epilepsies. There are combinations of drug and device therapies or gene therapy and device therapies that are in development, which have a lot of promise, and I think we'll have much more precise and targeted therapies within the next decade. Dr Monteith: Awesome. I really appreciate our conversation, and thank you so much for your wonderful article. I learned a lot reading it. Dr Friedman: Thank you. Dr Monteith: Today I've been interviewing Dr Daniel Friedman, whose article on surgical treatments, devices, tools, and non-medication management of epilepsy appears in the most recent issue of Continuum on epilepsy. Be sure to check out Continuum audio episodes from this and other issues. And thank you to our listeners for joining today. Dr Monteith: This is Dr Teshmae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use this link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

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