Influencer Chan Plante on Coping with Misdiagnosis and Finding a Community

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters. And this is the Brain and Life Podcast. Hello, Brain and Life Podcast listeners. I hope you had a great and safe 4th of July holiday. Daniel, I hope that you also had a lovely 4th of July.

Dr. Correa:
I had a wonderful time in New York. It can be wild sitting on the rooftops and looking out in every direction. There are fireworks of every legal and illegal type being shot off everywhere.

Dr. Peters:
Yeah, I don't know how, I wonder how your pets liked it. My Beau and Amber and Lucy, those firecrackers are not their friends.

Dr. Correa:
Luckily, our pets are okay, but we definitely have some friends that can get traumatized. So that's always sort of the frustrating part. It's a pleasant time to be with friends, but then also to be aware of the people and pets that are triggered by it. It's unfortunate.

Dr. Peters:
And when you have these get togethers, I actually ended up having dinner at my neighbor's house. I like to check out blogs online to get inspiration for holiday parties and gets togethers, sometimes for holiday parties, get togethers and also just find out the general gossip. Do you ever check out those blogs?

Dr. Correa:
Well, it definitely resonates with me the idea of eating first with your eyes. So many of our listeners probably know and recall from other episodes, I'm a bit of a food nerd. I love cooking. It's one of the things sometimes I do rolling into the house even before putting down my bag or taking off a jacket. But when I'm going to a party or we're hosting some friends over, I like to look online or Instagram and all kinds of different places, for recipes, obviously with my eyes first is look for things that are appealing and feel like they fit the season. And since I'm a bit of a visual learner, those pictures help me put a good context to what things might fit with what we want and what ways to make it look more appealing. And then often I'm end up kind of mashing together two or three recipes. I'm not always that great at following just one. I always like, I want this and this. How do I combine it?

Dr. Peters:
It's Daniel spin on things, which I'm sure makes it a little extra exciting. And what I think is fun about these blogs, they can start out as cooking blogs or recipes, but then they usually put some kind of thing about lifestyle or what's going on in their lives. So I got to actually have a wonderful conversation with Chandler Plante, and she's the assistant editor of Popular Lifestyle blog called PopSugar. And she in particular works on the health and fitness section for the blog. But the whole blog, PopSugar covers fashion, cooking, parenting, entertaining, and also health, which she is very passionate about. And she's very passionate, particularly for people that are going through chronic illnesses.
And this was inspired by her own personal journey where she developed really a myriad of neurologic symptoms that led to a stroke in her brain. And then she had some imaging on MRI scans that was very concerning, that was later on found to be really just inflammation. But this all culminated in losing vision in one eye, which can be quite traumatic. But she has just the most amazing spirit. She's very active on social media, which is TikTok, and also Instagram. We then chatted with expert, David Newman-Toker, who is not only trained in neurology, but also in ophthalmology.

Dr. Correa:
I mean, this sounds like the type of situation that so many of our listeners and our community would relate to, these combination of symptoms and going through this vague set of situations and diagnosis and the tests and just how to put it all in context with a chronic and living with a different chronic condition.

Dr. Peters:
Hello and welcome podcast listeners. I'm so excited to be joined by Chandler Plante. She's coming to the podcast today. She also goes by Chan. She's assistant editor for PopSugar Health and Fitness. It is a popular blog network for women on all types of topics. It has a little bit of fashion, parenting advice, cooking, also has the tea, which is my favorite, and also has fitness, which should be my favorite. She creates content about chronic illness, beauty, and also disability. She is here today to share her story about her neurologic condition, coping strategies, and sort of her just awesome positive attitude that she has regularly on TikTok and shares with her followers. And she will share it with us today. So, Chan, welcome to the Brain and Life Podcast.

Chan Plante:
Thank you so much. I'm so excited to be here. I'm very honored to be speaking with you.

Dr. Peters:
Thank you so much for coming to chat with us. So I know I gave you a short introduction. Can you just tell us a little bit about where you're joining us from today and tell us a little bit about yourself?

Chan Plante:
Of course. I am joining from Tucson, Arizona. I live in the desert, so if my eyes weren't already dry enough, that just contributes even more. I've been writing my whole life. I went to school for magazine journalism and that's what I continue to do, and that has helped me a lot with social media, which is now what I've kind of started to pivot towards in light of all of my health issues. It started off with me just sending hospital updates online to my grandparents and my family and my friends. And then one day one of them blew up on social media and I just kept at it and I just tried to keep it real and share what I'm going through and it seems like people are interested. So that's been a really unexpected gift. I'm very, very lucky, and I've connected with so many amazing people and we're just in this together trying to figure it out.

Dr. Peters:
I like that. I like being in it together. Now, your day job is you're assistant editor for PopSugar Health and Fitness. Can you tell us a little bit more about PopSugar?

Chan Plante:
Yes, I love PopSugar. So I just started doing some more social media work for them as well. So I get to create videos, which is awesome. We write a lot. I've been trying to do some more chronic illness content for them as well, which is amazing. I've been writing about running with the chronic illness. I just interviewed an advocate named Alice Wong about disability intimacy, which is really exciting and that is an extremely rewarding part of my job. I obviously do some regular fitness stuff, which is great too. We love a fit, healthy icon, but getting to actually talk about chronic illness and disability in my 9:00 to 5:00 is something I didn't expect to do. So it's been awesome.

Dr. Peters:
Well, this is a great platform for you to introduce to our Brain and Life audience because we're all about patients that have maybe neurologic challenges or disorders or conditions and how they can cope with them to thrive with them and also have fitness. So we appreciate that you're essentially doing similar efforts at PopSugar.

Chan Plante:
Yeah, I definitely try to. I mean, because life goes on whether you want it to or not sometimes.

Dr. Peters:
I know what you were working at People Magazine, and again, I love People Magazine. It's one of my favorite go-to's on a plane whenever I'm flying.

Chan Plante:
Yes.

Dr. Peters:
And you lost your vision in your right eye, can you tell us how this sort of all happened and how it all started?

Chan Plante:
Definitely. So I graduated college in 2020, so right in the pandemic. So fun. And I was freelancing for a while, just trying to write whatever I could. I thought I'd be maybe doing entertainment stuff. I was writing about music and celebrity things. And then finally, I got my foot in the door and got a job working as an editorial assistant for the editor-in-chief at People Magazine. So I got ready to move out to New York City, and right before that happened, I had two strokes, which was uh-oh, not expected. So I recovered for the most part and was really determined to just keep it moving. I just wanted to still have my career and pretend like everything was normal, even though, of course, it wasn't. And I moved out to New York City, I think around October of 2021. I've had two strokes, so it's sometimes hard to remember the dates.
And then I think around November, I woke up and had all of this pain and numbness around the right side of my scalp. And I knew from having my two strokes prior that that was not a good sign. So I took myself to the ER and they found a mass behind my eye. At the time they thought it was meningioma, which as you know is a brain tumor. And I was in a way kind of happy to hear that because that's a known thing that you can treat. It wasn't a mystery anymore. It had a name or so I thought. And so thinking that it was a brain tumor, I was what? 22 years old at the time, I called my mom, she came to New York City, picked me up, and we flew back to Arizona to get that taken care of because I had such an extensive medical history already with my two strokes. And when I woke up from that plane flight the next day, this is now December of 2021, I had no vision in that eye.

Dr. Peters:
Oh, my gosh.

Chan Plante:
So I don't know if it was just bad timing, if maybe probably wasn't a great idea to be flying, but we didn't know. We just thought I had a brain tumor. I couldn't do that by myself in New York City all alone with no money. So I was still working for people all through that time. They were always lovely to me. The editor-in-chief was so great, but I felt like a failure because I had to take off work and I had to focus on my health, and that was a full-time job in and of itself. So I decided to just leave eventually because I felt like I was just stressing everyone out and putting a lot of burden on my co-workers.
And that's something I've had to get over because I still have to take leave. I'm on leave right now for surgery, and that doesn't mean I'm a failure. It doesn't mean that I can't be a productive member of society. It just means that life's a little different for me, and I've come to terms with that and I'm still a very successful, happy person. So I've come a long way, but that's how some of this started basically.

Dr. Peters:
Oh my gosh. I mean, I think that will resonate with so much with our listeners because especially when you're young and you're starting a job for the first time, you don't expect that you'll have sort of these really huge shifts in what you have to do and actually take family medical leave.

Chan Plante:
I know.

Dr. Peters:
And you've really had to do those really early on with people, right?

Chan Plante:
Yeah, totally. I mean, I had to try to navigate short-term disability, and when you're just starting out and you think this is your big break, you don't even want to show up to the office two minutes late. And here, I was taking a big fat medical leave that I so desperately needed and trying to explain to everyone that I wasn't just tired, I was completely debilitated. I couldn't do anything. I had so much brain fog. I was in so much pain, and I didn't know how to communicate that. I was so new to chronic illness and so new to disability myself. So yeah, I had to overcome a lot of my own kind of stigma and listen to my own body.

Dr. Peters:
And that's so important. And one of the other things you had to really contend with is having a misdiagnosis. I mean, you just explained, you were told you had two strokes, then you have a mass, now you have a brain tumor. How did you sort of handle that?

Chan Plante:
So the first time I had a stroke, it was March of 2021. Yeah, March of 2021, I had my first stroke, but it was misdiagnosed as just anxiety because I was 21 at the time. Again, I'm trying my best with the dates. I was 21 at the time, and the hospital didn't think it was possible for a 21-year-old with no prior medical history to be having an ischemic stroke. It's very unusual. So they did imaging for a hemorrhagic stroke, a brain bleed, which is what you would typically see in someone that age. But also because of COVID times, the hospitals were overrun. They didn't necessarily have the time, the equipment, the staffing on a systemic level to do what they needed to do to give me the proper diagnosis. So on the one hand, I'm a young woman and you hear a lot of stories about young women kind of having their symptoms being dismissed as anxiety.
That's something we see, but also the systemic support just wasn't there. So I think that was a double whammy. And at the time, I remember just feeling grateful that someone was giving me medical attention for my anxiety because that also had never been treated really in my life. And I do have anxiety. It was a very complicated feeling. I needed the proper mental health care earlier in my life. We needed better systemic support during COVID, and we need to have better understandings and better attitudes about the women self-reporting their symptoms. So that's my view on it. But then, yeah, later in life, having the inflammation behind my eye diagnosed as a meningioma, I got on the plane and woke up with no vision. So that's another thing that contributed to my health journey. Would things have been different if I stayed in New York City? I'll never know what really could have gone differently. How could that have changed? I'm not sure. Is there a point where doctors just have to acknowledge that they don't know what's going on?

Dr. Peters:
I think they do. I mean, I think that this is where you have to have the confidence to say that you don't necessarily have all the answers. And while that can be frustrating for patients and for loved ones, that's why we have specialty consultations and move forward. So it can help patients like you and yourself. So I completely agree.

Chan Plante:
Right.

Dr. Peters:
How are you doing now? I know that you just had some recent surgery. I don't know if you want to share that with us. Do you mind sharing?

Chan Plante:
Of course. I actually just made the decision to have my right eye removed completely. I put it off for a really long time. Eventually we discovered that this was not a meningioma, it was just a giant mass of inflammation. My two strokes were also connected to inflammation in my head. We're not entirely sure why this inflammation started in my body. We're thinking it was possibly caused by post-viral type illness, some kind of autoimmune illness post-COVID, which is why I talk about COVID so much on my page. But basically the inflammation behind my eye was just growing bigger and bigger. And I'm on methotrexate and I'm on Rituximab. These are really powerful immunosuppressants that are supposed to stop your body from attacking itself. It's supposed to stop inflammation from growing. But I kept having flare-ups, and I'd been on these very powerful medications for a year and a half. And these aren't really medications that you're supposed to be on for the rest of your life.

Dr. Peters:
I totally agree.

Chan Plante:
Yeah. So I thought that those medications would help me. I thought that they would get my eye back inside of my head at the very least. But when I realized that the mass behind my eye was just getting worse and I was still in pain, I just couldn't do it anymore to be honest with you. I wasn't in excruciating pain all the time. But when my flare-ups happened, it was very painful. It was waking me up throughout the night. I had to run to the shower in the morning to get hot water on it because it was just aching. It was just awful. And on a physical level, having to wear your flare-ups on your face, the quality of life was awful. I just wasn't there. I felt so ashamed of the way I looked, and it was getting to the point where I couldn't even make eye contact with people.
I was just so uncomfortable in my own body and I didn't want to live that way. Here I am now, this journey started when I was 21, but now I'm about to turn 25 and I want to have a career, and I deserve that. I deserve to be able to move to a city. I deserve to be able to start a family. I deserve to be able to live comfortably in my body. And so most people who have an enucleation or an exenteration, they have an eye injury or something where it's very clear that the eye needs to be removed. It's painful, and it doesn't see, in my case, it's a little bit different.
It was a little bit more elective, so it was kind of difficult to get my whole medical team on the same page. So that was stressful to make that decision. But my surgeon, my oculoplastic surgeon, he's been following my case for two years now, and he's really seen me struggle with this mentally and physically. He was the one who finally was like, "No, we need to get this taken care of." And he did an amazing job. We were able to take out the eye but also take out 90% of the inflammation behind.

Dr. Peters:
Wonderful.

Chan Plante:
Yeah, and we filled it that obviously when you take out 90% of what's behind the eye, you need to fill it in with something. So we used a fat graft and now we're just waiting for it to heal. And I'll eventually be able to wear a prosthetic eye, which is a huge, huge win. We'll do a little chemotherapy afterwards to try and get this thing in remission and go from there, I guess.

Dr. Peters:
Well, I just think you have such a positive attitude, and I will say that. Are you healing? Are you feeling okay right now?

Chan Plante:
I'm feeling amazing. I think it does a body good to be a little less inflamed.

Dr. Peters:
Well, I just want to say kudos to you for going through all that, and [inaudible 00:20:52] thank you. This is just such a... We're so thankful that you would join us during your recovery.

Chan Plante:
It was all stitched up for a while, but now she's open. She looks amazing. When I say she, I'm talking about my eye, and I'm so excited. I have such big hopes for the future to get to wear a beautiful prosthesis and not worry about waking up in pain. What an absolute blessing. I feel so excited.

Dr. Peters:
I'm excited for you. And do you know when you'll get the prosthesis?

Chan Plante:
Yeah, I'm thinking it'll be in about three months. It's a long time because we had to use the fat graft, but better than nothing.

Dr. Peters:
So I will tell you, one of my best friends lost his eye. He had to have a surgery similar to you, and he got his prosthesis and he's doing great. I mean, I look at him sometimes and I can't tell. I have to really focus. And I've known him since I was, well, I guess junior high. So we're still really good friends, and so I'm going to tell them to check out your TikTok, but I will tell you that there are people out there and that are doing really great with sort of a similar journey.

Chan Plante:
That makes me so happy. I've connected with a lot of people, a lot of monocular people on TikTok who have helped me with this transition, and they've been sharing their stories and their advice. They helped me prepare for surgery. They sent me care packages. We're actually all going to meet up this summer, just a bunch of one-eye baddies, and I'm really excited about that. The power of social media to actually connect people in a very tangible and meaningful way is always surprising and very touching to me. I think it's very important. So I'm looking forward to that. And also, hopefully I'll get to have some fun eyeballs, like sparkly ones.

Dr. Peters:
I like that. Now, one of the things you've done on TikTok and social media is you've talked about your sort of eye designs for the eye patches.

Chan Plante:
Yes.

Dr. Peters:
Can you tell us a little bit about that?

Chan Plante:
Absolutely. I have quite a few, and I also have a few crochet eye patches. Some of them are blinged-out, some of them are painted. Most of them are leather and painted because that's the most comfortable for me. They can hold their shape a little bit more. But basically I go on Etsy, Danielle's Leather on Etsy, if anyone's curious, and I ask her to paint them with whatever I want. I have roses, I have fruits. I have one that's designed to look like porcelain. I've had people send me some. I have one that's completely beaded in rainbow colors. I have one from Rachel McKinsley who did flowers and rhinestones. She has a prosthetic eye that's sparkly and wonderful. She has so many prosthetic eyes, but I like that she did an eye patch for me that kind of looks like her prosthetic eye. And then I have some, here, I'll show you one of my crochet ones that has embroidery of little-

Dr. Peters:
Oh, that's so cute.

Chan Plante:
... ladybugs and flowers. I have one that looks like a sunflower. I wanted to be able to celebrate, and like I said, continue to live my life with this illness, with this disability to the best of my ability. I don't think this has to be such a sad, awful thing. I think it's something I can embrace for sure. And that's not anything groundbreaking. There's tons of awesome fashionable people in the chronic illness and disability community doing such cool things, but it's really lifted my spirits and I'm going to keep doing it. Whatever life throws my way, we're just going to make the most out of it, I guess, because life is way too short and all we can do is continue to slay.

Dr. Peters:
I totally agree. And I do think that when you have an audience online and you can reach out to them, you get information from them and you give information to them. So what are some of your favorite things that you've learned about from your followers?

Chan Plante:
Oh, that's such a good question. They've taught me so many tangible things. They'll tell me about certain specialists. They'll tell me about certain hospitals. I've been able to connect with legit doctors and hospitals from my followers. I'll have contacts and connects from that. But I think the biggest thing social media has done for me is connect me with members of the chronic illness community. Because like I said, I never expected to be chronically ill. I never expected to be disabled. I don't think anyone really does. So I wasn't sure how to navigate that. I felt very alone and I felt very angry in the beginning of this. I didn't feel sad. I just felt angry because I felt like no one really understood what I was going through. At 21 years old, I was very lonely and I was in these hospitals and I was in pain, and I was all bloated from prednisone.
I was just very mad at the world. And specifically TikTok really helped me understand that, one, I wasn't alone. And two, it gets better, which for a while, I didn't know if it was going to get any better. Now, I have this whole community of one-eyed friends, chronically ill friends who I'm actually going to see in real life and who actually support me and send me love and uplift me. And I try my best to do the same for them. And that is so important to me when I'm going through something that's so scary and so dark, I mean, it really is. I don't really share that as much as I probably should, but it can get really dark if you let it. And social media has helped me keep it light and realize that this is something you can get through, and you have people holding your hand and you have people rooting for you. And that's something I'm very, very grateful for.

Dr. Peters:
So I like the idea of saying, you're shedding light. You're shedding light not just on sort of the fears that you had and the frustrations and that anger that you may have had at the very beginning, but shedding light on sort of like, I'm going to get through this and that there is a chronicity, but there's also a lot of hope out there.

Chan Plante:
Yes. Oh my gosh. When I first started this, I was like, this is going to be my life forever. I can't, it's going to be my life forever. It's going to be pain and suffering, and I can't do that forever. And that felt very hopeless and that felt very scary. I was like just trapped in that mindset. So to see that there's people who they deal with chronic pain every single day, but there's ups and there's downs or they deal with flare-ups, there's ups and there's downs. That's just very helpful to see on a human level. There's not a ton of representation in the mainstream media for chronic illness, even though so many, so many of us deal with it or will deal with it at one point or another.
So we really do have to, again, stick with one another and share what we know. And that's not always medical advice. Again, you don't necessarily need to be taking medical advice from strangers on the internet, but it's just encouraging each other and being there for one another and letting people know that they're not alone and that it does get really real sometimes. Also, [inaudible 00:28:55]-

Dr. Peters:
Really real.

Chan Plante:
... like no joke, I'm not doing a million times better, but I'm the happiest I think I've ever been. I'm not healed for sure. I don't even have an official diagnosis, but I'm 10 times happier than I was even before I was sick, which is crazy. I look back at photos thinking I would miss the way I was before this, but not at all. I feel so much happier now because I think this illness has changed my whole perspective on life, doesn't make it worth it. It does not make it worth it, but it has. It's changed my whole perspective and it's made life a lot more enjoyable for me. So there's hope for sure. And there's people that'll help you see that.

Dr. Peters:
Well, Chan, you're awesome. You're amazing.

Chan Plante:
Thank you.

Dr. Peters:
So what is next in the future for you? What's the next? What do we want to accomplish next? What's our next goal and plans?

Chan Plante:
I have so many big plans, OMG. OMG, I would love to keep speaking with people on whatever platform lets me. Hopefully with PopSugar, I'll get to speak with more people in the chronic illness community and share that with a wider audience. I'd love to write a book one day. I really would. Whoever's listening, I would... Let me write a book. It'll be great. It'll be a bestseller.

Dr. Peters:
I like it. Chan has a plan for a book.

Chan Plante:
Chan has a plan. I do. I would love to write a book. That's definitely what I would like to use my platform for in the long run. But I do see myself building a platform and using it for good and speaking up for things I believe in and just keeping it real and offering some hope. And that's it. Nothing too wild, just staying on course. And I'm so surprised by the opportunities I get every single day and just staying focused and staying true to myself and staying kind. That would make me very happy if I'm able to do all of those things.

Dr. Peters:
Well, I wish the best for you, and I hope if it's all possible, we can check back with you after you get the prostheses and check it out.

Chan Plante:
I would love that. I would love that so much.

Dr. Peters:
Great. Great. And I will tell you to our audience, I have already recommended Chan's TikTok site about the eye patches to one of my patients even today in the hospital when I was rounding. So I said, "You got to check this out." So I'm going to say thank you to you for sharing all of your experiences, your advocacy for others, and for all people out there with chronic illness, I want you to check out Chan at her website, chandlerplante.com and TikTok at chanplante.

Chan Plante:
Thank you so much.

Dr. Peters:
Thank you to all.

Dr. Correa:
Can't get enough of the Brain and Life Podcast. Keep the conversation going on social media when you follow at neurodrcorrea and at brainandlifemag, or visit brainandlife.org.

Dr. Peters:
Hello, Brain and Life Podcast audience, thank you for joining us today. I am Dr. Katy Peters, your co-host, and I'm honored to introduce our medical expert, Dr. David Newman-Toker. He is a professor of neurology, ophthalmology, and otolaryngology, and is the inaugural recipient of the David Robinson professor in Vestibular Neurology at Johns Hopkins Hospital. He holds a joint appointment with emergency medicine and health science informatics at the Johns Hopkins University School of Medicine, as well as in the epidemiology and health policy management at Johns Hopkins Bloomberg School of Public Health. Now, his academic mission, in addition to being an amazing neurologist and neuro-ophthalmologist, is to make sure we can eliminate harms from diagnostic errors. And we're going to learn more about this in his research. So I'm really excited because we're not going to just talk about disorders of the brain stem, of the cranial nerves that can lead to vision loss, double vision and vertigo, but also about what happens with diagnostic errors and mistakes. So Dr. Newman-Toker, welcome to the Brain and Life Podcast.

Dr. Newman-Toker:
Thanks so much, Katy. It's great to be here with you from lovely, sunny Baltimore, and we look forward to having this conversation.

Dr. Peters:
And again, I am just delighted to interview you, of note, I trained at Johns Hopkins and you trained me, so thank you.

Dr. Newman-Toker:
It's my pleasure. You've done an amazing job. So it's been great to see you flourish.

Dr. Peters:
Aw, that's very kind. But now, tell us a little bit more about yourself. I gave you a brief introduction, but tell us more about yourself and where you're joining us from today.

Dr. Newman-Toker:
Yeah, so my background is in neurology, neuro-ophthalmology and neuro-otology. And I have also a PhD in clinical research methods from the School of Public Health. And most of the work that I do, as you alluded to relates to problems with vision, vision loss, double vision or dizziness. And most of the research that we do is about finding better ways to do diagnosis and patients with these disorders where we often don't do as good a job as we might. I have been in Baltimore for almost a quarter-century now, and it's been a wonderful home for me all these years. So great to be coming to you from Baltimore today.

Dr. Peters:
Absolutely. Shout out to Baltimore. It's a great town. I just loved it there. So now, we're going to talk about acute vision loss. You can imagine this has to be quite traumatic, but as a neurologist and a neuro-ophthalmologist, can you tell us sort of about what are the neurologic causes of acute vision loss?

Dr. Newman-Toker:
Yeah, so vision loss is a bit of a complex problem. Our visual system starts at the front of our eyeball and goes all the way back to the back of our brains. And therefore, you can get vision loss from problems anywhere from the front of the eye to the back of the brain. When we think about neurologic causes, we think about anything affecting the vision starting at the back of the eyeball rather than the front of the eyeball where the brain-related elements start to begin in what we call the retina. And then they leave the neural signals, leave the retina and go out towards the brain through something called the optic nerve.
And from there, they work their way back into the main part of the cerebral hemispheres or the big part of the brain that everybody's familiar with seeing and all the way to the back in an area called the occipital cortex where those visual signals are received and interpreted. So when we think about causes of vision loss from neurological disorders, we think about diseases that affect the optic nerves or the structures immediately behind them and diseases that affect the brain in what we call the cerebral hemispheres, as I said.

Dr. Peters:
Now, are there any sort of comorbid conditions that could predispose somebody to sort of neurologically associated visual loss?

Dr. Newman-Toker:
Certainly. So anybody who's got problems with blood vessels will be predisposed to stroke, whether that's due to long-standing high blood pressure, high cholesterol or other rarer conditions that affect blood vessels or cause inflammation in blood vessels or blood clotting disorders that all predisposed to stroke, cardiac conditions such as atrial fibrillation, et cetera. So there's sort of a long list of things that predispose to stroke-like conditions, in particular with respect to vision loss, a narrowing of the carotid arteries, which are large blood vessels that go from the chest and the heart up into the brain to feed blood to most of the brain and also feed blood to the eye, can have what we call transient monocular blindness, which is a precursor to stroke where people have episodes of vision loss, antecedent to potentially suffering either a stroke in the eye or a stroke in the brain. And of course, anybody who has systemic illnesses like cancer or multiple sclerosis or otherwise that affect multiple parts or areas of the brain potentially, those are also patients who are predisposed to suffer vision loss.

Dr. Peters:
Now, when we interviewed our influencer, Chandler Plante, she's pretty young and this happened when she was really in her 20s. What do you think about when somebody has acute vision loss and they may be under the age of 30 versus somebody who's over the age of 60, what are your thoughts and sort of diagnoses that come to mind?

Dr. Newman-Toker:
Yeah, certainly when we think about age, we think about different spectrums of disease. So typically younger patients like Chandler Plante, we think about things like optic neuritis, which is I mentioned as an inflammatory disorder of the vision nerve rather than stroke. Although stroke is always a possibility regardless of the patient's age. And obviously in older patients, we tend to think of stroke, but it's often the case that it's not stroke. In older patients, acute vision loss, particularly in one eye, we think about things like what's called ischemic optic neuropathy, which is if you will, a small stroke affecting the vision nerve itself, the optic nerve. And occasionally that is due to more significant systemic inflammatory diseases, something called giant cell arteritis or temporal arteritis where there's an inflammation of blood vessels that can affect multiple blood vessels going to the eye and the brain and vision loss there can be a harbinger of something even worse. And so we're constantly trying to identify that disorder, especially in older patients. But in younger patients, we have to be mindful right from the start about what the potential causes of vision loss are.

Dr. Peters:
So I can just imagine you're a patient in the emergency room, you're now can't see out of one eye or maybe both eyes, really the need to find out what the diagnosis is just so critical. So what are those emergency diagnostic tests that you're recommending to happen within minutes to hours of this happening for patients?

Dr. Newman-Toker:
Yeah. So when we think about how to approach a patient with vision loss, it really first starts with taking a good history and doing a good examination because all of the downstream tests are going to be determined entirely by the nature of the vision loss itself. So we typically start by asking the question, is it one eye or is it both eyes? When somebody has vision loss, it could be either, it could be solely in one eye, in which case we call that monocular vision loss, or it could be vision loss to one side of the world in both eyes. And there you would have, say for example, you couldn't see things to the left in your left eye, but you also couldn't see things to the left in your right eye. That's what we call a hemianopia or inability to see half the world.
And when somebody has a hemianopia, typically that's a problem with the brain or near the brain towards the back. Whereas if you have a problem that affects one eye only, it's almost always a problem that's in the optic nerve or the eyeball itself. And that immediately points us to where we need to be looking for the problem, and that changes the way we think about what it is that we are doing in terms of testing. So typically, we start with figuring out where the problem is based on the bedside exam, and then we pursue that area with advanced diagnostic tests either for anatomic imaging or assessment of blood supply.

Dr. Peters:
Well, thank you for explaining all that, and it has to be so important for those patients that are going through this acute, abrupt change. Now, what are the immediate priorities other than diagnosing of managing that patient with acute vision loss?

Dr. Newman-Toker:
Yeah. Well, in terms of management, the first and foremost is always to prevent progression of either the vision loss or progression to some worsening of a neurological condition, particularly irreversible worsening. So anytime we're evaluating a patient with vision loss, our first question is, could this be due to a condition that's likely to be progressive if we don't intervene acutely? There are many causes of acute vision loss that are like that. For example, if someone is having vision loss from swelling of the optic nerves because of elevated intracranial pressure, for example, which we didn't talk about, is another cause of vision loss in younger patients from a disease called idiopathic intracranial hypertension used to be called pseudotumor cerebri, which in Latin means I don't have a brain tumor, but I otherwise look as if I do have a brain tumor.
And there the vision loss can reach a critical stage where even though it starts off milder, it becomes progressively worse and we may need to do a surgery immediately to intervene to either reduce the pressure in the optic nerves themselves or reduce the pressure in the brain with a surgical procedure. If we have a patient who has a critical stenosis of a carotid artery that is about to block off and potentially cause a very large stroke in the brain that could be crippling even beyond the loss of vision with loss of ability to move one side of the body or speak, then we have to immediately intervene from a stroke perspective to prevent progression of that illness going from a stroke in the eye to a massive stroke in the brain.
Sometimes, for example, in patients, in older patients who have vision loss who may have this disease I alluded to before, giant cell arteritis, we need to immediately administer steroid treatments. And the urgency is quite high in some of these disorders. So for example, in giant cell arteritis, when I was a neuro-ophthalmology fellow, and we saw a lot of these patients, we used to have in the back room an extra bottle of steroid pills that we could give them right away because that second, those 20 minutes to get it up from the pharmacy potentially made a vision saving difference for the patient. So vision loss is a serious issue, acute unexpected vision loss that's suspected to be of neurologic cause is something that requires immediate attention.

Dr. Peters:
And I know it's so important to make those immediate strides to help our patients, but in certain situations, they will lose their vision permanently. So what are the rehab strategies that can help improve a patient's function and their quality of life once they have vision loss?

Dr. Newman-Toker:
Vision loss is very hard for people to adapt to, especially if it's significant bilateral vision loss affecting both sides. Monocular vision loss or one eye vision loss, patients typically compensate by using the good eye, and that's the primary strategy. Obviously, there's always a goal to try to regain or re-utilize as much vision as possible in the affected eye, but it's often the case that especially if there's also a problem with the movement of that eye. So there's vision loss and movement problem with that eye that patients will simply patch the eye or occlude the eye in some way with frosted tape on the glasses so that they don't get sort of a distraction between the two images that are slightly different.
In patients who have low vision in both eyes, there are low vision services where people can focus on management strategies to try to optimize the vision that they do have to use magnifying lenses appropriately to be able to read or things of that nature, or take adaptive behavioral strategies, for example, if they've lost a lot of their peripheral vision out to the side vision to change the way they get from point A to point B, to be driven places rather than drive places, which obviously is easier these days than it used to be, now with a lot of readily accessible ride-share approaches. But in terms of restoring vision, it's super hard to restore vision.
There are some attempts in people, for example, who have strokes affecting the brain to try to regain parts of the lost visual field through training with visual field rehabilitation. But these effects are small at best, and often people don't get a lot of vision back. So I guess what I'll say is with vision loss, an ounce of prevention is worth a pound of cure or probably 10 tons of cure. And really our goal is to try to get to people early, diagnose them and intervene acutely to prevent them from either losing more vision or to restore the vision that they have if we're there soon enough.

Dr. Peters:
I completely agree, and I always tell my brain tumor patients that I treat, it's so important to have sort of all of your senses sort of ready to go to be as functional as possible. I have had a couple patients that have had vision loss, and the one thing that they've really benefited from is having a guide dog. So I want to just shout out to the Guide Dogs for the Blind, which is a great organization along with in North Carolina, a group for Guiding Eyes for the Blind. So I know a lot of our patients have benefited from those pups, so I appreciate that.

Dr. Newman-Toker:
Oh, that's fantastic. It's a great choice.

Dr. Peters:
Yeah, I agree. I agree. In addition to understanding blindness and vision loss and double vision in patients and patients having vertigo, you have a really very interesting line of research. Can you just sort of tell us a little bit more about your research and why it's important?

Dr. Newman-Toker:
Yeah, absolutely. And I guess I'll maybe start with the origin story here, because when I was a resident in the late 1990s, dating myself now, I saw tragic misdiagnosis after tragic misdiagnosis after tragic misdiagnosis, patients who went unnecessarily blind, patients who became paralyzed on one side and patients who became paraplegic because of mistreatable neurologic conditions. After seeing a few of these, one after the other after the other and seeing that the healthcare system really wasn't doing anything about this, I decided I needed to devote my career to preventing medical misdiagnosis, neurologic diagnosis in particular, but medical misdiagnosis in general. Our systems of care really aren't designed to address this problem. And it's a funny artifact of the structure of how we work as a medical profession. So it turns out that the structure of how we've organized ourselves is around diseases and organ systems. So there are heart doctors and there are brain doctors and there are lung doctors and gut doctors and all of those specialties learn about the organ system that they study and the diseases that affect that organ system.
And that starts in medical school and it goes all the way through training, and our entire research apparatus is structured around the same thing. At the National Institutes of Health, we have the National Heart, Lung and Blood Institute and the National Institute for Neurological Disorders and Stroke. So again, it's focused around organ systems and diseases. As a result, we tend not to learn as well how to differentiate between diseases based on patient symptoms. We do learn a lot about diagnosis in the course of our training, but we never get that refined cross-disciplinary training that you really need to do optimized diagnosis. So if you were going to see a patient with headache, if you're trained in neurology, you're trained to see neurological causes of headache, you're trained to see a lot of patients with migraine and cluster headache and other rarer forms of headache disorders, cluster idiopathic paroxysmal hemicrania, and other strange diseases that nobody's ever heard about.
But you may not know anything at all about dental causes of headache or eye causes of headache or even ear causes of headache because you've never really been exposed to any of those other things. One of the benefits of the kind of training approach that I happen to have been fortunate to have taken in my career is that I've seen a lot of cross-training. So I've been trained in ophthalmology as well as neurology, and I've sought out special training in ear diseases and other disorders with the express intent of trying to be well-rounded from a diagnostic perspective. But that's hard to do, individual clinicians have to really go out of their way to get that cross-training and I think ultimately that's part of the problem. That having been said, the big picture of diagnostic errors is that it affects a lot of people.
We recently published an article showing that about 800,000 Americans each year die or are permanently disabled as a result of medical misdiagnosis and mostly from the usual suspects, including things like stroke and sepsis and lung cancer. The things that we hear a lot about as important diseases that are harmful killers, stroke is at the top of that list. Unsurprisingly, not only is it a common disease, but it's commonly misdiagnosed. For example, heart attacks, which is probably the one even though we still miss heart attacks, heart attacks are probably the shining star example of how we've been able to create systems of care to prevent misdiagnosis. We miss about one and a half percent or so of all heart attacks and the number of patients with heart attack who are harmed as a result of this misdiagnosis is less than 1%. That's pretty good.
It's not that there aren't potential opportunities for us to improve there, certainly women and minorities are 20 to 30% more likely to be misdiagnosed, and that's not okay. And there are things that we can do to help better identify heart attacks that present with atypical symptoms in women, for example. But we've done such a good job that there isn't as much sort of juice left to squeeze out of that particular orange in terms of preventing misdiagnosis. But if you look at something like stroke, a disease that affects a comparable number of people, both of them affect roughly a little over a million people a year if you count strokes and transient ischemic attacks. What you'll find is that for strokes, we miss 10 times as many of them, so we miss about 17 or 18% of strokes at first contact.
And as those symptoms become less and less typical of stroke, we miss the strokes at higher and higher rates. So for example, if a patient presents with dizziness and vertigo as their main symptom, we miss about half of them. And so as our current medical care system stands, we don't have good ways to address those problems. And so we've really devoted not only the work that I do personally from a research perspective, but also our institutional efforts towards reducing medical misdiagnosis through our Center for Diagnostic Excellence at the Armstrong Institute for Patient Safety and Quality here at Johns Hopkins.

Dr. Peters:
So what if a patient is going to the emergency room or going to see a physician in a clinic, what can they do to... Is there a way that they can avoid being misdiagnosed? What can they do?

Dr. Newman-Toker:
Yeah, so this is a question I get all the time. What can patients do to protect themselves? What can I do to protect myself when I go see a doctor? And while it's not always the case that you can protect yourself from misdiagnosis, even sometimes if I'm a neuro-ophthalmologist and I go with some sort of neuro-ophthalmic symptom to see another neuro-ophthalmologist, maybe I'll know whether I'm being misdiagnosed, maybe I won't. But patients can always do three things to help reduce the chances that they're going to be misdiagnosed. The first is they can come prepared. The second thing is that they can ask questions, and the third thing is that they can remain vigilant after they leave. So that's before, during, and after an encounter with the healthcare system. I'll go through each briefly. So come prepared means that nowadays time is short in healthcare, you do not have in most encounters an hour or an hour and a half or two hours to spend having a robust conversation with your clinician.
Instead, you're likely to have two minutes or five minutes or 10 minutes or occasionally 20 minutes, but whatever that time is, it's short, and because it's short, your best bet as a patient is to come with a short summary of your symptoms, like a bulleted timeline, when your symptoms started and what the key nodal points were in that process that allowed you to... I mean, they brought you to that point of care, and the most important parts of that are really about the symptoms that you're trying to have evaluated rather than, yes, it's important to make note of major medical interventions, but mostly it's about your experience so that people can understand something about the nature of the disease. If you prepare that in advance, then the clinician can spend more time trying to figure out what's wrong with you and less time just doing basic fact-finding.
Bring a list of medications with you, bring that bulleted list or half a page executive summary, if you will, of your symptoms. That'll make things smoother, and you'll get more brain effort time on the part of the clinician devoted to figuring out the diagnosis rather than ferreting out the information. On the second front when you're with the clinician, you have to ask questions, and you should always ask questions when you don't understand what's going on. But as far as diagnosis is concerned, it's super important to ask a few pointed questions. Probably the most important question that patients can ask when they're with their clinicians when they're initially given some sort of a diagnosis or an explanation for their health problem is, "Doctor, what's the worst thing it could be, and why is it not that?" Because what that allows you to do is see how the clinician is thinking about this problem.
If they give you a robust answer that says, "Well, look, when we see people with vision loss, we're super worried about stroke, but here's why it's not a stroke. We've done this test and that test, or we've thought about it this way, or usually symptoms don't go on for this long and then disappear again." Typically, we only see that in inflammatory disorders, and they give you some sort of logical explanation. You won't know necessarily whether it's right or wrong, but if it sounds like they've thought about it, that's a good sign. Whereas if they say, "Oh yeah, those things are uncommon, or that's rare, or I never see that at my clinic," then now you've got a sense that maybe they're being a little bit more dismissive of the idea without having sort of thought it through. And if they give you a hard time for asking them, then you need to find a new doctor.
And the third thing is you have to remain vigilant after you leave. So after that encounter, you cannot just assume that the diagnosis you've been given is correct, because what you need to know is you need to have gotten information during the visit about what to expect. So should your symptoms be getting better, should they be getting worse? Should they be staying the same if the diagnosis is correct? And then when the disease goes off script, you need to immediately jump back in to the healthcare system. So if somebody said, "Yeah, it's not going to get worse, it should get better over the next three days," and now it's getting worse, you need to say, "Okay, well, look, I can't just assume that the diagnosis is right and the treatment's not working."

Dr. Peters:
Well, I just love all that advice for our patients and their loved ones, come prepared, ask questions, remain vigilant. You heard it here, advice from Dr. Newman-Toker. I just want to say thank you. This is wonderful. I'm so glad I got to catch up with you, but this discussion is going to be so wonderful for our listeners, it was so informative, so enlightening, and again, come prepared, ask questions, and remain vigilant.

Dr. Newman-Toker:
Thanks so much, Katy. It was a pleasure having this interview with you and catching back up, and I hope that all of the listeners benefit from what we shared today. Thanks again.

Dr. Correa:
Thank you again for joining us today on the Brain and Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain and Life Magazine for free at brainandlife.org. Don't forget about Brain & Life en EspaÃ±ol.

Dr. Peters:
Also, for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to blpodcast@brainandlife.org and leave us a message at 612-9286206.

Dr. Correa:
You can also find that information in our show notes, and you can follow Katy and me and the Brain and Life Magazine on many of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online at neurodrcorrea.

Dr. Peters:
And Dr. Katy Peters, joining you from Durham, North Carolina and online at katypetersmdphd.

Dr. Correa:
Most importantly, thank and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.

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Influencer Chan Plante on Coping with Misdiagnosis and Finding a Community

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