Exploring Papilledema: Insights and Practical Guidance

Papilledema describes optic disc swelling (usually bilateral) arising from raised intracranial pressure. Due to its serious nature, there is a fear of underdiagnosis; hence, one major stumbling points is correct identification, which typically requires a thorough ocular examination including visual field testing.

In this episode, Kait Nevel, MD speaks with Susan P. Mollan, MBChB, PhD, FRCOphth, author of the article “Papilledema” in the Continuum® April 2025 Neuro-ophthalmology issue.

Dr. Nevel is a Continuum® Audio interviewer and a neurologist and neuro-oncologist at Indiana University School of Medicine in Indianapolis, Indiana.

Dr. Mollan is a professor and neuro-ophthalmology consultant at University Hospitals Birmingham in Birmingham, United Kingdom.

Additional Resources

Read the article: Papilledema

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Host: @IUneurodocmom

Guest: @DrMollan

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 Nevel: Hello, this is Dr Kait Nevel. Today I'm interviewing Dr Susan Mollan about her article Papilledema Diagnosis and Management, which appears in the April 2025 Continuum issue on neuro-ophthalmology. Susie, welcome to the podcast, and please introduce yourself to our audience.

Dr Mollan: Thank you so much, Kait. It's a pleasure to be here today. I'm Susie Mollan, I'm a consultant neuro-ophthalmologist, and I work at University Hospitals Birmingham- and that's in England.

Dr Nevel: Wonderful. So glad to be talking to you today about your article. To start us off, can you please share with us what you think is the most important takeaway from your article for the practicing neurologist?

Dr Mollan: I think really the most important thing is about examining the fundus and actually trying to visualize the optic nerves. Because as neurologists, you're really acutely trained in examining the cranial nerves, and often people shy away from looking at the eyes. And it can give people such confidence when they're able to really work out straightaway whether there's going to be a problem or there's not going to be a problem with papilledema. And I guess maybe a little bit later on we can talk about the article and tips and tricks for looking at the fundus. But I think that would be my most important thing to take away.

Dr Nevel: I'm so glad that you started with that because, you know, that's something that I find with trainees in general, that they often find one of the more daunting or challenging aspects of learning, really, how to do an excellent neurological exam is examining the fundus and feeling confident in diagnosing papilledema. What kind of advice do you give to trainees learning this skill?

Dr Mollan: So, it really is practice and always carrying your ophthalmoscope with you. There's lots of different devices that people can choose to buy. But really, if you have a direct ophthalmoscope, get it out in the ward, get it out in clinic. Look at those patients that you'd know have alternative diagnosis, but it gives you that practice. I also invite everybody to come to the eye clinic because we have dilated patients there all the time. We have diabetic retinopathy clinics, and it makes it really easy to start to acquire those skills because I think it's very tricky, because you're getting a highly magnified view of the optic nerve and you've got to sort out in your head what you're actually looking at. I think it's practice. and then use every opportunity to really look at the fundus, and then ask your ophthalmology colleagues whether you can go to clinic.

Dr Nevel: Wonderful advice. What do you think is most challenging about the evaluation of papilledema and why?

Dr Mollan: I think there are many different aspects that are challenging, and these patients come from lots of different areas. They can come from the family doctor, they can come from an optician or another specialist. A lot of them can have headache. And, as you know, headache is almost ubiquitous in the population. So, trying to pull out the sort of salient symptoms that can go across so many different conditions. There's nothing that's pathognomonic for papilledema other than looking at the optic nerves. So, I think it's difficult because the presentation can be difficult. The actual history can be challenging. There are those rare patients that don't have headache, don't have pulsatile tinnitus, but can still have papilledema. So, I think it- the most challenging thing is actually confirming papilledema. And if you're not able to confirm it, getting that person to somebody who's able to help and confirm or refute papilledema is the most important thing.

Dr Nevel: Yeah, right. Because you talk in your article the importance of distinguishing between papilledema and some other diagnoses that can look like papilledema but aren't papilledema. Can you talk about that a little bit?

Dr Mollan: Absolutely. I think in the article it's quite nice because we were able to spend a bit of time on a big table going through all the pseudopapilledema diagnoses. So that includes people with shortsightedness, longsightedness, people with optic nerve head drusen. And we've been very fortunate in ophthalmology that we now have 3D imaging of the optic nerve. So, it makes it quite clear to us, when it's pseudopapilledema, it's almost unfair when you're using the direct ophthalmoscope that you don't get a cross sectional image through that optic nerve. So, I'd really sort of recommend people to delve into the article and look at that table because it nicely picks out how you could pick up pseudopapilledema versus papilledema.

Dr Nevel: Perfect. In your article, you also talk about what's important to think about in terms of causes of papilledema and what to evaluate for. Can you tell us, you know, when you see someone who you diagnose with papilledema, what do you kind of run through in terms of diagnostic tests and things that you want to make sure you're evaluating for or not missing?

Dr Mollan: Yeah. So, I think the first thing is, is once it's confirmed, is making sure it's isolated or whether there's any additional cranial nerve palsies. So that might be particularly important in terms of double vision and a sixth nerve palsy, but also not forgetting things like corneal sensation in the rest of the cranial nerves. I then make sure that we have a blood pressure. And that sounds a bit ridiculous in this day and age because everybody should have a blood pressure coming to clinic or into the emergency room. But sometimes it's overlooked in the panic of thinking, gosh, I need to investigate this person. And if you find that somebody does have malignant hypertension, often what we do is we kind of stop the investigational pathway and go down the route of getting the medics involved to help with lowering the blood pressure to a safe level. I would then always think about my next thing in terms of taking some bloods. I like to rule out anemia because anemia can coexist in a lot of different conditions of raised endocranial pressure.

And so, taking some simple blood such as a complete blood count, checking the kidney function, I think is important in that investigational pathway. But you're not really going to stop there. You're going to move on to neuroimaging. It doesn't really matter what you do, whether you do a CT or an MRI, it's just getting that imaging pretty much on the same day as you see the patient. And the key point to that imaging is to do venography. And you want to rule out a venous sinus thrombosis cause that's the one thing that is really going to cause the patient a lot of morbidity. Once your neuroimaging is secure and you're happy, there's no structural lesion or a thrombosis, it's then reviewing that imaging to make sure it's safe to proceed with lumbar puncture. And so, we would recommend the lumbar puncture in the left lateral decubitus position and allowing the patient to be as calm and relaxed as possible to be able to get that accurate opening pressure. Once we get that, we can send the CSF for contents, looking for- making sure they don't have any signs of meningitis or raised protein. And then, really, we're at that point of saying, you know, we should have a secure diagnosis, whether it would be a structural lesion, venous sinus thrombosis, or idiopathic intracranial hypertension.

Dr Nevel: Wonderful. Thank you for that really nice overview and, kind of, diagnostic pathway and stepwise thought process in the evaluations that we do. There are several different treatments for papilledema that you go through in your article, ranging from surgical to medication options. When we're taking care of an individual patient, what factors do you use to help guide you in this decision-making process of what treatment is best for the patient and how urgent treatment is?

Dr Mollan: I think that's a really important question because there's two things to consider here. One is, what is the underlying diagnosis? Which, hopefully, through the investigational save, you'll have been able to achieve a secure diagnosis. But going along that investigational pathway, which determines the urgency of treatment, is, what's happening with the vision? If we have somebody where we're noting that the vision is affected- and normally it's actually through a formal visual field. And that's really challenging for lots of people to get in the emergency situation because syndromes of raised endocranial pressure often don't cause problems with the visual acuity or the color vision until it's very late. And also, you won't necessarily get a relative afferent papillary defect because often it's bilateral. So I really worry if any of those signs are there in somebody that may have papilledema.

And so, a lot rests on that visual field. Now, we're quite good at doing confrontational visual fields, but I would say that most neurologists should be carrying pins to be able to look at the visual fields rather than just pointing fingers and quadrants if you're not able to get a formal visual field early. It's from that I would then determine if the vision is affected, I need to step up what I'm going to do. So, I think the sort of next thing to think about is that sort of vision. So, if we have somebody who, you know, you define as have severe sight loss at the point that you're going through this investigational pathway, you need to get an ophthalmologist or a neuro-ophthalmologist on board to help discuss either the surgery teams as to whether you need to be heading towards an intervention. And there are a number of different types of intervention. And the reason why we discuss it in the article---and we'll also be discussing it in a future issue of Continuum---is there's not high-class evidence to suggest one surgery over another surgery. We may touch on this later.

So, we've got our patients with severe visual loss who we need to do something immediately. We may have people where the papilledema is moderate, but the vision isn't particularly affected. They may just have an enlarged blind spot. For those patients, I think we definitely need to be thinking about medical therapy and talking to them about what the underlying cause is. And the commonest medicine to use for raised endocranial pressure in this setting is acetazolamide, a carbonic anhydrous inhibitor. And I think that should be started at the point that you believe somebody has moderate papilledema, with a lot of discussion around the side effects of the medicine that we go into the article and also the fact that a lot of our patients find acetazolamide in an escalating dose challenging. There are some patients with very mild papilledema and no visual change where I might say, hey, I don't think we need to start treatment immediately, but you need to see somebody who understands your disease to talk to you about what's going on. And generally, I would try and get somebody out of the emergency investigational pathway and into a formal clinic as soon as possible.

Dr Nevel: Thank you so much for that. One thing that I was wondering that we see clinically is you get a consult for a patient, maybe, who had an isolated episode of vertigo, back to their normal self, completely resolved… but incidentally, somebody ordered an MRI. And that MRI, in the report, it says partially empty sella, slight flattening of the posterior globe, concerns for increased intracranial pressure. What should we be doing with these patients who, you know, normal neurological exam, maybe we can't detect any definite papilledema on our endoscopic exam. What do you think the appropriate pathway is for those patients?

Dr Mollan: I think it's really important. The more neuroimaging that we're doing, we're sort of seeing more people with signs that are we don't believe are normal. So, you've mentioned a few, the sort of partially empty sella, empty sella, tortuosity of the optic nerves, flattening of the globes, changes in transverse sinus. And we have quite a nice, again, table in the article that talks about these signs. But they have really low sensitivity for a diagnosis of raised endocranial pressure and isolation. And so, I think it's about understanding the context of which the neuroimaging has been taken, taking a history and going back and visiting that to make sure that they don't have escalating headache. And also, as you said, rechecking the eye nerves to make sure there's no papilledema.

I think if you have a good examination with the direct ophthalmoscope and you determine that there's no papilledema, I would be confident to say there's no papilledema. So, I don't think they need to necessarily cry doubt. The ophthalmology offices, we certainly are having quite a few additional referrals, particularly for this, which we kind of called IIH-RAD, where patients are coming to us for this exclusion. And I think, in the intervening time, patients can get very anxious about having a sort of MRI artifact picked up that may necessarily mean a different diagnosis. So, I guess it's a little bit about reassurance, making sure we've taken the appropriate history and performed the examination. And then knowing that actually it's really a number of different signs that you need to be able to confidently diagnose raised ICP, and also the understanding that sometimes when people have these signs, if the ICP reduces, those signs remain. You know, we're learning an awful lot more about MRI imaging and what's normal, what's within normal limits. So, I think reassurance and sensible medical approach.

Dr Nevel: Absolutely. In the section in your article on idiopathic intracranial hypertension, you spend a little bit of time talking about how important it is that we sensitively approach the topic of potential weight loss for those patients who are overweight. How do you approach that discussion in your clinic? Because I think it's an important part of the holistic patient care with that condition.

Dr Mollan: I think this is one of the things that we've really listened to the patients about over the last number of years where we recognize that in an emergency situation, sometimes we can be quite quick to sort of say, hey, you have idiopathic endocranial hypertension and weight loss is, you know, the best treatment for the condition. And I think in those circumstances, it can be quite distressing to the patient because they feel that there's a lot of stigma attached around weight management. So, we worked with the patient group here at IIH UK to really come up with a way of a signposting to our patients that we have to be honest that there is a link, you know, a strong evidence that weight gain and body shape change can cause someone to fall into a diagnosis of IIH. And we know that weight loss is really effective with this condition. So, I think where I've learned from the patients is trying to use language that's less stigmatizing. I definitely signpost that I'm going to talk about something sensitive. So, I say I'm going to talk about something sensitive and I'm going to say, do you know that this condition is related to body shape change? And I know that if I listen to this podcast in a couple of years, I'm sure my words will have changed. And I think that's part of the process, is learning how to speak to people in an ever-changing language. And they think that sort of signpost that you're going to talk about something sensitive and you're going to talk about body shape change. And then follow up with, are you OK with me talking about this now? Is it something you want to talk about? And the vast majority of people say, yes, let's talk about it. There'll be a few people that don't want to talk about it. And I usually come in quite quickly, say, is it OK if I mention it at the next consultation? Because we have a duty of care to sort of inform our patients, but at the same time we need to take them on that journey to get them back to health, and they need to be really enlisted in that process.

Dr Nevel: Yeah, I really appreciate that. These can be really difficult conversations and uncomfortable conversations to have that are really important. And you're right, we have a duty as medical providers to have these conversations or inform our patients, but the way that we approach it can really impact the way patients perceive not only their diagnosis, but the relationship that we have with our patients. And we always want that to be a positive relationship moving forward so that we can best serve our patients.

Dr Mollan: I think the other thing as well is making sure that you've got good signposts to the professionals. And that's what I say, because people then say to me, well, you know, kind of what diet should I be on? What should I be doing? And I say, well, actually, I don't have professional experience with that. I'm, I'm very fortunate in my hospital, I'm able to send patients to the endocrine weight management service. I'm also able to send patients to the dietetic service. So, it's finding, really, what suits the patient. Also what's within licensing in your healthcare system to be able to provide. But not being too prescriptive, because when you spend time with weight management professionals, they'll tell you lots of different things about diets that people have championed and actually, in randomized controlled trials, they haven't been effective. I think it's that signpost really.

Dr Nevel: Yeah, absolutely. So, could you talk a little bit about what's going on in research in papilledema or in this area, and what do you think is up-and-coming?

Dr Mollan: I think there's so much going on. Mainly there's two parts of it. One is image analysis, and we've had some really fantastic work out of the Singapore group Bonsai looking at a machine learning decision support tool. When people take fundal pictures from a normal fundus camera, they're able to say with good certainty, is this papilledema, is this not papilledema? But more importantly, if you talk to the investigators, something that we can't tell when we look in is they're able to, with quite a high level of certainty, say, well, this is base occupying lesion, this is a venous sinus thrombosis, and this is IIH. And you know, I've looked at thousands and thousands of people's eyes and that I can't tell why that is. So, I think the area of research that is most exciting, that will help us all, is this idea about decision support tools. Where, in your emergency pathway, you're putting a fundal camera in that helps you be able to run the image, the retina, and also to try and work out possibly what's going on. I think that's where the future will go. I think we've got many sort of regulatory steps and validation and appropriate location of a learning to go on in that area. So, that's one side of the imaging.

I think the other side that I'm really excited about, particularly with some of the work that we've been doing in Birmingham, is about treatment. The surgical treatments, as I talked about earlier… really, there's no high-class evidence. There's a number of different groups that have been trying to do randomized trials, looking at stenting versus shunting. They're so difficult to recruit to in terms of trials. And so, looking at other treatments that can reduce intracranial pressure. We published a small phase two study looking at exenatide, which is a glucagon-like peptide receptor agonist, and it showed in a small group of patients living with IIH that it could reduce the intracranial pressure two and a half hours, twenty-four hours, and also out to three months. And the reason why this is exciting is we would have a really good acute therapy---if it's proven in Phase III trials---for other diseases, so, traumatic brain injury where you have problems controlling ICP. And to be able to do that medically would be a huge breakthrough, I think, for patient care.

Dr Nevel: Yeah, really exciting. Looking forward to seeing what comes in the future then. Wonderful. Well, thank you so much for chatting with me today about your article. I really enjoyed learning more from you during our conversation today and from your article, which I encourage all of our listeners to please read. Lots of good information in that article.

So again, today I've been interviewing Dr Susie Mollan about her article Papilledema Diagnosis and Management, which appears in the most recent issue of Continuum on neuro-ophthalmology.Please be sure to check out Continuum episodes from this and other issues. And thank you to our listeners for joining us today. Thank you, Susie.

Dr Mollan: Thank you so much.

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.