Re Release: Chan's Story - The Mystery of the Protruding Eye

Summary

The Medical Detectives: Chan’s Story – The Mystery of the Protruding Eye

Podcast: The Medical Detectives
Hosts: Dr. Erin Nance (Orthopedic Surgeon), Anna O’Brien (Content Creator)
Guest: Chan (aka Chan Plant)
Release Date (Re-release): August 20, 2025

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Episode Overview

This episode dives into the deeply personal and medically puzzling journey of Chan, a young woman whose life took a dramatic turn after a bout with Covid-19 led to a series of unexplained, debilitating neurological and ophthalmological symptoms—including ultimately losing vision and the removal of one eye. Through this story, the hosts and Chan explore not only medical complexities and diagnostic mysteries, but also themes of advocacy, the visible vs. invisible illness dichotomy, persistence, and the limits of modern medicine.

The episode shines a light on the realities of life with chronic and poorly understood illness, especially in the context of Long Covid, and highlights the importance of both patient experience and medical humility when answers are elusive.

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Key Discussion Points & Insights

The Invisible-to-Visible Illness Journey

• Navigating Stigma: Chan’s journey began as someone with no health issues; Covid-19 became the turning point for her transition from “invisible” (internal, not physically apparent) to “visible” illness (external, outwardly obvious), and each brought unique social and medical challenges.
  • “People feel comfortable asking somebody about a visible disability… Like, why are you like that?... with an invisible illness, you’re constantly trying to explain to people why you don’t feel good. But then with a visible illness, people feel like they’re owed an explanation.” — Anna [01:55]

The Onset & Medical Mystery

• Initial Symptoms & Dismissal: After recovering from Covid-19 in December 2020, Chan developed numbness, tingling, and headaches—leading to fainting and loss of motor control—but was quickly dismissed as having anxiety by ER staff. This misattribution, especially in women, points to a larger problem in medicine.
  • “A lot of women have probably experienced [being told it's anxiety].” — Dr. Nance [07:49]
  • “They sent me home with anxiety meds...” — Chan [08:59]

[Key Segment: 05:18–08:59]

• First Major Crisis: Numb tongue, fainting in ER (vasovagal syncope diagnosis—attributed to anxiety), and a sense of being unseen despite alarming symptoms.

Escalation: Stroke & Search for Diagnosis

• Worsening Neurological Issues: Months later, Chan suffers a facial droop and returns to the hospital. Finally, with a friend advocating for her, doctors take her seriously and do an MRI.
  • “He starts freaking out. He’s like, we have to go to the hospital now... The ER was still really not taking it very seriously. Luckily, my friend, who I always mention was male... was able to be there and advocate for me.” — Chan [09:46–10:46]
• Diagnosis: Ischemic Stroke: Unusual for her age; doctors install arterial stents. No cause found.

[Key Segment: 10:54–12:51]

• Angiogram & Hospitalization: Chan undergoes an angiogram, learns her carotid arteries are drastically narrowed, spends two weeks in the hospital feeling like she might die—a first existential fear for her.

The Protruding Eye: Mystery Mass

• Vision Loss and Eye Symptoms: Weeks after moving to New York for a dream job post-stroke recovery, she develops burning/numbness behind one eye and is told it may be a meningioma (benign brain tumor). Relieved to have an answer, she prepares for treatment—but is ultimately misdiagnosed.
  • “If I can name it, I can treat it… whatever it is, I will take it.” — Chan [16:17]

[Key Segment: 19:11–23:00]

• Rapid Deterioration: Acute loss of vision in right eye; ER overwhelmed by Covid. Long wait for care, then a craniotomy and biopsy uncover no tumor—just unexplained inflammation.

Chronic Illness Limbo: Treatments & Setbacks

• Caught in Therapeutic Spiral: Prescribed high-dose corticosteroids (prednisone) for months—without effect but with major side effects. Labeled as “steroid-unresponsive,” Chan cycles through treatments, from immunosuppressants to radiation—still no answers.

[Memorable Description: 26:31–27:01]

• Physical Transformation:
  • “My eye stops moving… it looks a little bit like a lazy eye and now it’s bulging… it looks like, with all the kindness and love to my former self, it looks a little bit like a frog or like a little lizard.” — Chan [27:02]
• Trigeminal Neuralgia (extreme nerve pain) develops, compounding her suffering.

[Key Segment: 25:00–25:33]

• The Emotional Cost: Every time a new treatment fails, hope erodes, and she’s left feeling like the problem is her own fault.

Living with the Unknown

• Search for Closure (Long Covid): Exhausting cycles of workups at top hospitals (e.g. Mayo Clinic) produce no clarity. Chan pursues her own research, which reveals she’s not alone: Long Covid and post-viral syndromes (like ME/CFS) can have dramatic, lingering, and variable effects.

  • “Other people are dealing with complications. They might not look exactly like yours, but you are not alone by any means.” — Chan [32:27]

• Decision for Eye Removal: After years of pain and failed treatments, Chan ultimately decides, with the “gentleness and care” of her Arizona surgeon, to remove her eye in 2024—a deeply personal, difficult, but freeing decision.

  • “Even if your eye looks so awful and feels so horrible, like, why wouldn’t she just get rid of it? …it was after a recent flare up when I realized this was gonna be my life forever unless I did something about it right then and there.” — Chan [34:14]

The Meaning Behind the Medical Mystery

• Question of Why—No Simple Answers:
  • “[Long Covid] has over 200 different symptoms… it’s basically an umbrella term, but it’s definitely valid. And so many people are experiencing it… but for some people, they get the flu or some such virus and they’re completely, you know, disabled essentially for life, and there’s no cure…” — Chan [36:43]
  • “You do what you do with the information you have at the time… not everything has a diagnosis.” — Dr. Nance [40:06]
• Acceptance vs. Diagnosis:
  • “What I’ve kind of learned… is that there’s really not a magical solution… I’m interested in not so much putting a name to what’s going on with me, but just finding a way to make it livable and make it better.” — Chan [41:10–43:00]

Advocacy, Community, and Representation

• Life Online: Chan shares her experience openly on TikTok (@chanplante), bringing visibility to chronic illness/disability communities, and inspiring others by showing off her sparkling prosthetic eyes and makeup for people with visual differences.
  • “I wanted to love myself and I wanted to show people that they could love themselves, too.” — Chan [45:13]

[Key Segment: 44:55–47:31]

• Building Community: Chan describes finding solidarity and learning self-advocacy from the chronic illness and disability communities online.

Strength, Advice, and Takeaways

• Lasting Words for Listeners:
  • “Chronic illness… beats down on you and can really strip you of hope... Be nice to your barista, have those kind interactions with your nurses… you need to find light, you need to find support if you’re going to get through it… We still found time to laugh in the hospital...” — Chan [48:19]
• Quality of Life After Surgery: Despite lingering illness and fatigue, the removal of her eye ends the worst pain and brings Chan renewed quality of life.

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Notable Quotes & Memorable Moments

| Timestamp | Speaker | Quote or Moment | |:-------------:|:-----------:|:-------------------| | 01:55 | Anna | “How comfortable people are asking somebody about a visible disability... with an invisible illness, you’re constantly trying to explain to people why you don’t feel good. But then with a visible illness, people feel like they’re owed an explanation.” | | 08:59 | Chan | “They sent me home with anxiety meds. So after my initial episode that was misdiagnosed as anxiety, I continued to have symptoms...” | | 09:46 | Chan | “Luckily, my friend, who I always mention was male... was able to be there and advocate for me and be like, no, we really need to run an MRI.” | | 16:17 | Chan | “If I can name it, I can treat it… whatever it is, I will take it.” | | 20:36 | Chan | “I have such complicated feelings about it because on the one hand, like, you guys are totally right—someone should have seen me sooner. But also people were dying literally all around me.” | | 27:02 | Chan | “[My eye] looks a little bit like a frog or like a little lizard. So the entire under eye is also red... there’s no blood flow happening, there’s no drainage happening. So I’ve got this big red, inflamed eye, absolutely bulging, drooping...” | | 32:27 | Chan | “Other people are dealing with complications. They might not look exactly like yours, but you are not alone by any means.” | | 34:14 | Chan | “Even if your eye looks so awful and feels so horrible, like, why wouldn’t she just get rid of it?... But it was after a recent flare up... when I realized this was gonna be my life forever unless I did something about it.” | | 36:43 | Chan | “[Long Covid] has over 200 different symptoms... Umbrella term, but it’s definitely valid. So many people are experiencing it and so many people still haven’t recovered from Covid to this day, which we don’t talk about enough.” | | 41:10 | Dr. Nance | “Not everything has a diagnosis. And that’s what’s probably the most frustrating part of your story.” | | 43:00 | Chan | “It’s almost comforting when people admit that they don’t know what’s going on and they haven’t seen someone like me because... that’s the truth. And we need to start there if we’re going to have an honest... conversation.” | | 45:13 | Chan | “I wanted to love myself and I wanted to show people that they could love themselves, too.” | | 48:19 | Chan | “Be nice to your barista, have those kind interactions with your nurses. Fly home to be with your family if you need to. Those were the things that ultimately kept me going.” |

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Timestamps for Important Segments

• [02:34] The challenge of visible vs. invisible illness
• [05:18–08:59] First ER dismissal, fainting, anxiety mislabel
• [10:54–12:51] Hospitalization for stroke, first existential fear
• [16:17] Relief at (incorrect) brain tumor diagnosis
• [19:11–23:00] Vision loss, ER during Covid, craniotomy, “non-diagnosis”
• [25:00–25:33] Emotional impact of failed treatments
• [26:31–27:01] Describing facial and eye appearance
• [32:27] Discovering community in other Long Covid sufferers
• [34:14] Deciding to have eye removed
• [41:10–43:00] Acceptance without a diagnosis; philosophical close
• [44:55–47:31] Social media impact, sharing her journey
• [48:19] Support and advice for listeners: “find the small lights”

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Tone & Style

Raw, vulnerable, and candid—balancing medical detail, emotional honesty, dark humor, and practical advice. The hosts create an accessible atmosphere with explanations for non-medical listeners, validating patient experiences, and calling out systemic issues.

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Final Takeaway

Chan’s story is less about the discovery of a single diagnosis and more about the process of persistence, self-advocacy, and finding meaning and quality of life amid medical uncertainty. Her journey, amplified by candid social media sharing, makes tangible the realities of living with (and after) illness that defies labels, the necessity of hope, community, and acceptance, and the importance of supporting one another—both inside and outside the hospital.

Follow Chan:
TikTok/Instagram: @chanplante

If you have a medical mystery or story:
Email the show at [e-mail]

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Transcript

[A]

Hello, listeners. I know that this is a different voice than what you were expecting to hear today, but my name is Molly and I am the creator and producer of the Medical Detectives. To give you all a little peek behind the curtain, I am the producer of the show and the editor, and I've always kind of been a one woman team for both this show and the dating Detectives. I know many of you are also dating Detectives. Listeners. I've been doing this for about two years, and this week is the first week that being a one woman show has really caught up with me. Unfortunately, I cut my hand depending an avocado. Don't make my mistakes. Deep at your avocados with a spoon. But unfortunately, that injury has led to me having to have surgery and it's become a whole thing. So it's put me off my game a little bit. Been harder to edit, harder to talk to people about their stories. And so unfortunately, we got to take a week off so I can catch up. But I know you guys will understand. And in the meantime, I hope you enjoy this re release of a old episode. It's one of our first episodes and it's a really great one. And I hope if you haven't heard it, you really enjoy it. And if you have heard it, we will see you back here next week with a brand new story.

[B]

Hello. Hello, Erin.

[C]

How was your week?

[D]

Hi, friend. I had a great week and I actually, I just couldn't stop thinking about the conversation that we had with Chan. A lot of you may know her from her viral TikTok account, Chan Plant, where she has described her journey of going from having an invisible illness to a visible illness and kind of the challenges that come with having both types.

[B]

Yeah, it was kind of wild for me because what her story really got me thinking about is how comfortable people are asking somebody about a visible disability. Like, why are you like that? Like, people feel comfortable asking that. And to have lived on both sides of the coin, I think both of them have their own restraints. Obviously, with like an invisible illness, you're constantly trying to explain to people why you don't feel good. But then with a visible illness, people feel like they're owed an explanation or a reason why you are the way you are. And it's honestly got me thinking about a lot about that kind of dichotomy.

[D]

And I think probably one of the hardest things is when you have a visible illness, but. But you don't have the answer as to why you have that illness. And we're gonna get into that with Chan in just a little bit.

[B]

So yeah, it's a good one.

[D]

Can't wait for you guys to hear all about it.

[B]

I love me some Chan. I'm a Chan. Stan. Before we jump into the episode, I just wanna remind you all to send us your stories.

[D]

We are always looking for stories and you can send them in atstories themedical detectives podcast.com. this is your opportunity to have your voice heard. Hi, Chan. Welcome to the medical detectives.

[C]

Hello, besties. How are you?

[B]

You guys missed it, but we had a little, like, get to know you with Chan before we started recording and we are now all best friends. There is a girl trip in the chat.

[C]

This is true. We're all going to hang out after this. I can't wait.

[D]

I had a little head start because I have known Chan for maybe a year now and I am a huge fan of Chan. So kick us off. Kind of how things. How things start.

[C]

Oh, my gosh. Yes, absolutely. So a little bit about my health history. As far as I know, I was a totally healthy person. I had no prior medical history. I famously never got sick. Kind of a flex. No, unusual. Yeah, no unusual medical history in the family. Like, I was the one that never had to deal with any weird stuff prior to contracting Covid in December of 2020. So when I got Covid, I was like, okay, this is scary, but I'll probably be okay.

[B]

Yeah.

[C]

And then in February, I was living in Arizona at this time, still in school, finishing out my last semester of college online, and I started experiencing some strange symptoms. So I started getting numbness and tingling, kind of like when your foot falls asleep. Okay. All throughout my forearms and my hands. It kind of got worse when I got anxious and I started getting headaches, which I never had before. I didn't think much of this. I was like, okay, this is what people go through. And maybe I'm stressed. Like, I wasn't really freaking out about it. So one day my tongue goes totally numb in my mouth, and I'm like, okay, that's. That's strange.

[B]

What does it feel like? Like, how do you. I don't know. I just can't. Like, is it like you just had dental work?

[C]

Yes, exactly. Exactly like you just had dental work. It was pretty quick. It was like, it. It lasted maybe three minutes and then it was gone. But I was just kind of like, what was that? What? What was that? So I go to my mom and I'm like, I think I actually need to go to the er. And this is around March. It's like A super Covid time in Arizona. And I think everywhere. And my mom's like, we're not going to the ER so we can get Right. Exactly. She's like, absolutely not. And I finally convinced her, yes, we need to go. And when we get to the er, I start exhibiting some really weird symptoms. Like my blood pressure is crashing, I can't hold my left arm up, and the nurses are looking back and forth at each other. I'm like, what are they thinking? What are they thinking? So they call a little crash car. I go to get onto it, and I completely crumple. Like, I lose consciousness for a moment. And at this point, we're all confused. No one knows what's going on. So that first hospital visit, I had just fainted. No one really knew what was going on. I remember coming to, you know, regaining consciousness, and I was in the stretcher, and all I could hear was my mom crying in the hallway. And it was such an out of body experience. In a way, it was validating because I knew something was wrong with me. You know, I knew the numbness was a legitimate health concern, but also I started to feel really scared about what this actually was going to be. A few more hours went by, and then a nurse came in and told me that this was all just a vasovagal syncopal episode caused by anxiety. And any validation I had felt previously kind of went out the window. And all of a sudden I felt like I was being totally overdramatic, like I was not understanding myself or my body, because I truly didn't feel that anxious.

[B]

Okay, what is that? Erin, please explain. Please speak.

[C]

Yes, Dr. Nance can speak to this, because it's something that a lot of women have probably experienced.

[D]

So a vasovagal experience is fainting. Okay, that's. That's a medical term for. For fainting, for, you know, to simplify it.

[B]

Vagal experience.

[D]

Correct. It has to do with the nervous system that controls your body's function. And so it can happen if you stand up too quickly, right? And you get dizzy and all of a sudden you faint. If you are really dehydrated and you lose kind of your senses and faint. If you see the sight of blood and you faint, that is considered a vasovagal experience.

[C]

My little. My fainting spell was attributed, though, to anxiety. Like, I was too anxious, therefore I must have fainted. And that's why all of this happened.

[B]

I swear I'm seeing a trend in this show which I do not love, which is that women just are stressed out and don't have health issues. Not to be mad about it, but I swear, it's a common thing that we hear anyway.

[C]

Right, right. And so that was a really big part of my medical timeline because it delayed my care. They sent me home with anxiety meds. So after my initial episode that was misdiagnosed as anxiety, I continued to have symptoms, like, within a couple of days. I didn't think much of it. I kind of just assumed they'd eventually subside. I definitely didn't expect to have a huge episode again. I didn't expect for my tongue to go numb or anything of that nature. I thought by taking anxiety meds, maybe I'd make myself better or just taking myself out of stressful situations, I could stop that numbness and those headaches from happening. But of course, that wasn't actually what was going on. So everything kept happening. And then eventually, I did have another big episode. So three months go by, same headaches and numbness. And then by June of 2021, I'm hanging out with a friend, and the entire left side of my face starts drooping. I'm tired. I'm out of it. And my friend is seeing my face droop, and he starts freaking out. He's like, we have to go to the hospital now. And I'm like, no, no, no, we're totally fine. It's just anxiety. And he was like, no, you need to go to the hospital. So we went. And the ER was still really not taking it very seriously. So luckily, my friend, who I always mentioned was male, because I think that's relevant, was able to be there and advocate for me and be like, no, we really need to run an mri. And truthfully, I don't know if they would have if he hadn't been there.

[B]

Can we take a pause and just shout out to a guy that actually.

[C]

Like, listened to a woman shout out, very rare.

[B]

Very rare.

[C]

Very rare. They run an mri, and a nurse comes in, and she just starts apologizing to me. She's like, I'm so sorry. There's something really serious going on. This is, like, late at night, you know? And so they bring in the doctor on call, like, via a TV screen. Again, I'm on FaceTime. And at this point, we're all confused. No one knows what's going on. But this turns out to be ischemic stroke.

[B]

What is a stroke?

[C]

So. So there's two main types of stroke, per my understanding. Feel free to correct me at any time. There's the ischemic strokes and then there's hemorrhagic strokes. An ischemic stroke is not something you're typically seeing in a 21 year old. That's usually. It means that your brain's not getting enough oxygen. So usually it's from like built up debris in your arteries or like a blood clot. And so that takes time to develop. So it's very strange that someone, someone this young would have been experiencing that. And he very seriously tells me that I need an angiogram, which is like a procedure where you can see the blood flow in your brain.

[D]

So an angiogram is what they do, is they inject dye into your bloodstream and then they are able to project images where they can see how the dye travels throughout the arteries, throughout your body. And they will map and trace where all of the kind of think of it like a superhighway and see that all of the exits are flowing properly.

[B]

Gotcha. So that's not even like the solution to the problem. It's just trying to find the problem.

[D]

Correct. It's more of a diagnostic tool.

[B]

Okay, right.

[C]

And also, I just want to say it's so nice for you to be asking these questions because when you've been in hospitals for so long, you kind of learn to like, I'm like stenotic and angiograms and all these things that probably people don't know, but I've just had to learn because doctors won't take me seriously. Some of them won't, some of them are really great. But so, you know, this is where we're at. So I had the angiogram done. All I remember was that a surgeon came in and told me that most internal carotid arteries are 4 millimeters in diameter and mine were 0.5. And that scared me really badly. I was in the hospital this whole time for like a cool two weeks. It was my first time, my first long stunt in the hospital. And I was nervous for the first time ever that I could actually die. Like, is this what dying feels like? I guess so. And that was a really scary feeling. I am put on high dose corticosteroids, which is like kind of the standard of care for most weird inflammatory things. So I'm put on prednisone and that doesn't really work. So then I have stents placed in my arteries to keep the arteries open. And though they don't know what caused a young healthy person to have these strokes, they think that this will fix it. I had just graduated college, despite all of the Medical stuff I was going through, and I wanted to move on. I wanted to do something big with my life. I had studied magazine journalism, and I was going to do something with my degree. Like, I had just gone through this pandemic. I'd gone through this illness. I was ready to move on. And for me, the way to do that was by applying to jobs from my hospital bed. So people ask me all the time how I got the job at People, and I tell them LinkedIn, because that's. That's the truth. Like, I literally just applied through LinkedIn, submitted my resume, didn't know any contacts or anything like that, and I got the job. I was going to be working as the editorial assistant for the editor in chief, and that was like, the biggest deal ever to me. It sort of signified that I had a future and that my career was still an option for me and life hadn't just disappeared because I got sick. And I was really, really excited about that. So I got a roommate. We spent a really long time looking for apartments. Virtually anyone knows that's like a nightmare in New York City. And we found this amazing apartment, like, right by Central park in Carnegie Hill. We absolutely could not afford it. I don't know what we were thinking, but I just really wanted to move on and be, like, successful again. But to be honest, I don't think I ever really shook the feeling that I was still really, really sick. Like, a month later, I started experiencing some burning and numbness behind my eye this time. Uh oh. So I get myself over to the hospital and they find, like, a little mysterious mass of inflammation behind my eyeball. They tell me it's most likely meningioma, which is, like, a fairly treatable brain tumor. Okay. And I'm like, yes, we can treat those. Like, okay, like, we have an answer. And I understand how that sounds. But truthfully, when you have chronic illness, mystery health issues, you're like, whatever it is, I will take it. If I can name it, I can treat it. So I was super grateful to just put a name on it and feel like maybe I was going to be able to take care of this. They're not, like, particularly malignant, I don't.

[D]

Think they're not malignant at all. So they're benign, but they cause symptoms and they can be very symptomatic.

[C]

So being told I had a brain tumor, I was like, okay, well, I need to go back home to be with my family, because I'm not going to be alone in New York City broke. You know, I'm still 21.

[B]

Yeah.

[C]

Really scared in the middle of COVID Like, I'm just not doing that. I need comfort. I need support. I need advocacy. A lot of people disagree with this decision for me to fly back home to Arizona to be with my family and my doctors at this time. But, like, it was something I needed to do. If you feel like you could have stayed in New York City alone, that's amazing, but you're a liar.

[B]

Here's what I'm gonna say. It's really easy for people to tell you what they would have done when they never have to experience the actual illness.

[C]

100%.

[B]

It is really easy to say, I wouldn't leave my dream job until you have to live with what that is.

[C]

And that, too. Like, I already felt like a failure because I was having to sort of abandon this dream job of mine where there were, like, pretty high expectations, and I felt like I was letting everyone down. So I fly back home to Arizona, and I wake up in the morning with no vision in my right eye. Uh oh, uh, oh, oh. But I don't think this is going to last. Like, no one wakes up with no vision and thinks, well, that's it for me. Like, I was like, okay, I'm going to go to the hospital, and they're going to fix me, because that's what doctors will do for you. They will fix you. I was also texting my parents, like, hey, like, should I even go to the er? I don't want them to think I'm being over the top.

[B]

I'm a drama queen, right?

[C]

And what's funny is my dad was like, maybe, like, wait it out. And my mom was like, get an Uber right now. They're both at work. Get an Uber right now and go to the hospital. So I get to the ER again, It's a disaster zone because of COVID I wait there for, like, 12 hours because the only ophthalmologist they have on call is reserved for traumas. So, like, if you've been punched in the face or something like that. So I'm like, okay, should I throw myself down the stairs? Blink once. And they're kind of like, we're not gonna tell you no, if that's what you want to do. Like, this is the state of healthcare.

[D]

Whoa, whoa, whoa, whoa, whoa.

[B]

This really happened.

[C]

This really happened.

[B]

People couldn't get seen unless they were, like, in, like, a fight.

[D]

I'm assuming at this time, just because the hospital's so overrun with life or death Covid cases that to take Care of something that was not a life or death eye emergency probably wasn't on their priority list. But I would find that to be very unusual to have new onset of loss of vision, to not be able to see the, the, the eye doctor on call. And with the history of a stroke and having stents and connecting the two, it's hard.

[C]

Like I have such complicated feelings about it because on the one hand, like, you guys are totally right, someone should have seen me sooner. But also people were dying literally all around me.

[D]

And with a lot of, just in general these stories that we are telling, it is very easy to Monday morning quarterback a lot of these situations when you know what the end of the story is. And so I think a lot of our conversation we can have a balance of giving physicians, you know, grace for what the situation was, but then also recognizing that for you personally it had some serious consequences.

[C]

Absolutely. There were no resources for the physicians, for the people in the healthcare system. And that's kind of where I suffered in terms of my medical care. So at this point, I go to a different hospital against medical advice, ama, which dings your insurance, but who cares, right? This one's bigger. It's a teaching hospital. There's more people who can do things for me. But I'm still on so many blood thinners and steroids from my stroke that no one can really operate on me. So they admit me, kind of let me hang out for a bit. And they schedule craniotomy, which is basically when they drill into your skull so that they can take a bit of whatever's behind my eye, debulk it, try to biopsy it, and this is how they tell that it's not malignant. There was a mass behind my eye, but it ended up not being a meningioma. This was not a brain tumor, this was not a brain issue. But it also comes back as just like general non granulomatous inflammation. Like it's not really telling them a whole lot about what I'm dealing with. So all they could tell me was this should probably go away with steroids. So, so they give me steroids again. I'm really not happy about that. And they do nothing. I am a hater of corticosteroids, specifically prednisone. I was on high dose prednisone, 60 milligrams for about six months in one year, which is quite a bit to be on. And a lot of people actually like steroids because they offer some pain relief, they help with symptoms. Prednisone, corticosteroids they didn't do that for me. I proved to be, or the mask behind my eye anyway proved to be quite steroid unresponsive. So for me, I was experiencing all of the side effects of this medication, which include things like weight gain, mood swings, trouble sleeping. I mean, it literally changes the entire way that you look. It changes the way that your fat's distributed in your body, it changes your water retention, it makes you extremely irritable, it can cause psychosis in some people. So this is really not a med you want to mess around with for a long period of time. And I know six months doesn't sound that long, but for high dose corticosteroids it really is. And it was driving me crazy and I looked like a totally different person. Like I had already lost so much control over my health and now I had lost complete control over my appearance too. And that was so brutal on my mental health. And I felt like no one was listening to me. I was like, this isn't going to make me better. I could tell you right now, you're just going to put me through hell and it's not going to do anything for me. And this is where they start to tell me, okay, we don't really see this because steroids usually get rid of any kind of inflammation quickly. Eventually I go to the Mayo Clinic because no one has any answers for me. I get, you know, spinal taps, testing, craniotomies, biopsies, like more steroids, antibiotics, because maybe it's an infection, like everything you could possibly think of at some point. I get radiation therapy to see if that would help. Like every, everything, we're just throwing spaghetti at the wall and seeing if it'll stick.

[B]

That is the worst place to be emotional.

[C]

It is. Because emotionally, yes, because every time you.

[B]

Try a new medication and it doesn't work or a new treatment and it doesn't work, it is so destructive because it just takes a little bit more of your hope, which. And you're like, oh, it's gonna be this one. And it's not. There's only so many times you can say that before you start to like, treat yourself as the problem. I think that's like I'm just right, right from my own experience. I don't wanna put that on you, therapist on it, but I feel like it's only sometimes you can hear that.

[C]

Right, right. And every single time people will tell you that this is the answer. It's a different doctor, it's a different expert, it's a Different hospital, It's a different treatment. It's a different. It's a different procedure. This is going to be the one. This person knows best. And then you look and you're like, I have nothing but medical bills to show for everything I've done. And maybe if only I had tried harder or if I had found the right thing or if I had cut out gluten, you know, and you really, it really does turn on you and yourself, and that's a really heavy burden to carry.

[D]

And Chan, I want to ask you, because we are doing a podcast and not everyone will have the ability to visualize, but can you describe for the audience also what you looked like during this period of time?

[C]

Yes, absolutely. So to paint you a picture, I've really been out this for a while. My eye stops moving for one, so I can't look in either direction, up or down, left or right.

[B]

So previously you had full movement in the eye.

[C]

Correct. Okay. So now it's not moving. It looks a little bit like a lazy eye and now it's bulging. So there's something like 26 or 27 millimeters of proptosis, which is the medical term for like an eye bulge.

[B]

Thank you for that.

[C]

Which is a lot speak. Yes. It looks like, with all the kindness and love to my former self, it looks a little bit like a frog or like a little lizard. So the entire under eye is also red because due to the mass, which we call a pseudo tumor, the mass behind my eye, there's no blood flow happening, there's no drainage happening. So I've got this big red, inflamed eye, absolutely bulging, drooping, kind of like dragging the right side of my face downwards. I think that's a pretty accurate description. And it's painful as all get out. I describe it kind of like fire because it was a type of nerve pain. Ultimately, when I had flare ups and the mass behind my eye would grow bigger, sometimes it would press up against my facial nerves and cause that fiery pain all throughout my face. It literally felt like my face was melting from the inside out. It was excruciating. And they diagnosed me with something called trigeminal neuralgia, which is just extremely painful nerve pain. Extremely painful nerve pain. Okay. But it was really debilitating and it was really scary because it would happen like at the same time every single night and wake me up out of my sleep and it was disorienting and it put me in a really bad place mentally. Pain turns you into a different type of person. It makes it really hard to be joyful, to be kind. And that's something I really didn't like. I could feel myself kind of becoming cruel, and not because I wanted to, but because it was ruining me. And I think that's something that's extremely difficult to work through. And that kind of motivated me to try to find something, anything, that was going to make it better, even if it meant removing my eye. I remember most recently going to a very well revered cancer hospital in Texas and a rheumatology specialist telling me that they've never seen a patient like me. And in a way, I was like, oh my God, thank you so much. But in a much realer sense, I was also like, how. How is that possible? Like, how has no one seen anything like this? It's. It's deeply frustrating. And now I just want someone to tell me why this happened more than anything. So that's when I start looking into Long Covid. I started researching it on my own, just having known that I had Covid and then I had a stroke. Like, it's not a bar jump. And I'm not trying to attribute every single thing I went through to Covid, but that was at least a starting point for me to research. And I started connecting with more people who were dealing with complications from COVID and that started giving me just a little bit more closure, a little bit of an idea, a little bit of comfort, that, yes, other people are dealing with complications. They might not look exactly like yours, but you are not alone by any means. And that was huge for me. Since January 2022, I'm exhausted after all of my hospital stays. I actually got Covid for the second time from being in the Mayo Clinic. So I had to go back to the Mayo Clinic to seek care because I had such a massive flare up. So I'm tired of all the hospital stays. All my biopsies are coming back blank. I just want to be a normal person. And what's frustrating is that even the Mayo Clinic, like the top standard that we have in the US doesn't really have answers for me. They're kind of debating, is the mask behind your eye inflammation or is it an infection? That's kind of like the main debate they're having at this point. At one point in time, they were debating whether there was actual Covid particles behind my eye, but that turned out not to be the case. So they're thinking IgG4 sarcoidosis, like Telosa Hunt, all these different kind of rare issues. But I still don't have A definitive diagnosis. And this goes on for years, in and out of the hospital, and no one having any real answers for me. Some doctors do say they think it's likely Covid related, but there's really just no way to know for sure. And so I just live this way, with my eye slowly pushing further and further out of my head. I don't think I actually started to consider my eye removal until 2024. I really, you know, wanted to believe that I could get my vision back, which was never gonna happen, but that's okay. And if I couldn't get vision back, then I could at least make the eye look, quote, unquote, normal again, and I'd be able to, like, keep that part of myself. So, you know, I was trying to restore this relationship with my eyeball, which was actively pushing further and further out of my head and causing me all this pain. But I was so convinced that I was going to be able to live with her. I wanted to like her. I kind of felt bad for her because she was going through just as much as me. And I really started to develop this appreciation for the eyeball. And, you know, ultimately the eyeball is representative of a part of myself that I could have just chosen to hate forever. But we developed a really good relationship, and I really wanted to try to save her and inadvertently a part of myself. And it was really hard to accept that, like, I wasn't going to be able to. And so that's why it took me all the way up to 2024 when I had another flare up. Despite being on these super strong immunosuppressants and biologics. You know, methotrexate and rituximab, they just weren't working. Like, it was still getting worse. And at this point, I'm like, okay, I can't keep doing this. I'm 24. I want a family. I want kids. I clearly want a career really bad. And I deserve that. And the eyeball also deserves that. It sounds silly to say, but, like, that part of me also deserves peace. And it was a tough decision, but the right one.

[D]

Chan, I'm curious if it actually was coming from you to be the one to want to remove your eyeball, or if you were the one more pushing for let's try everything we can do to salvage it.

[C]

I pushed back on removing the eye for probably about two years. So from 2022 to 2024, I had one doctor in the ER tell me that he could have it removed in two hours. And I was like, I'm so sure you could, but you're not gonna. It's mine because I wasn't ready. Like, it's a part of yourself and people might not understand. Like, if your eye looks so awful and feels so horrible, like, why wouldn't she just get rid of it? But it was after a recent flare up in 2024 when I realized this was gonna be my life forever unless I did something about it right then and there. And so I made the decision with my surgeon here in Arizona, who is very kind and very lovely and really took an active interest in my case and was able to remove it with a gentleness and a care that I think is a little bit rare to see. And in terms of like surgery, because sometimes that can feel a little more cold and like clinical. So it was a really lovely way to end this story.

[D]

So, Chan, I'm curious because what I find will be very, I think, very powerful for people listening to this episode is that there are not a lot of long Covid stories, that there are physicians acknowledging even that long Covid is a thing, that there are long lasting symptoms that we don't even necessarily know why it happened or what's to come. And one thing that I am curious about is what I found, I guess probably scariest in the very early goings of COVID is why were some people dying and some people didn't even know they had it right. They were asymptomatic. And my question for you is what is your relationship with just the fact of knowing? Like, like, do you wonder, like, why did this have this effect on me, a healthy 21 year old woman with no medical problems and for other people, no effects?

[C]

That's such a good question. I think a lot about long Covid, which has over 200 different symptoms at this point. It's basically an umbrella term, but it's definitely valid. And so many people are experiencing it and so many people still haven't recovered from COVID to this day, which we don't talk about enough. But I think about COVID a lot in relationship to me, cfs, which is more commonly referred to as chronic fatigue syndrome, although that's not the preferred term. It's a post viral illness that you can get just from the flu or something like that. And most of us recover from the flu, right? We're totally fine. But for some people, they get the flu or some such virus and they're completely, you know, disabled essentially for life, and there's no cure and there's abysmal funding and there's not even really that much research. Not a ton of doctors or researchers know about it. A little bit more now, because Long Covid and me, cfs are thought to have some connections. But like I said, it doesn't affect everyone. And you know, for a lot of people, especially in the us they don't regard Covid as a threat at all because it didn't affect them that way. Just as a lot of us don't think the flu is that big of a deal because we're just going to get over it. But the reality is post viral illness is not novel. It's been around for a long, long time. You just haven't heard about it because we don't fund it, we don't teach people about it, and we silence, actively silence, the people who are going through it. The same goes for Long Covid, in my mind, at least. And we can't let that happen. Right? Like any virus is a threat. Anyone could have an autoimmune issue. Anyone could have weird genetics. Like I said, I had no prior medical history, but this happened to me. I don't know if there's something weird in my genetic sequence. I'm sure there's probably a blip somewhere. But this could happen to anyone. Anyone could have a blip. Anyone could experience complications, and anyone might not. You know, the rest of my family also got Covid, and they were totally fine. So.

[B]

So, honest question, when you were telling a story, I thought you getting Covid was just like, when it started, but they actually feel like Covid is the thing that kicked this all off.

[C]

I mean, I don't have any definitive answers, and I try to be careful about how I answer that because I don't want to. Like, I just don't want to be used as a gotcha moment because Covid's such a political thing now.

[B]

Girl, I'm fat on the Internet. I get it.

[C]

But in my mind, absolutely, Covid is what sent me down this strange autoimmune spiral. At the very least, I'm aware of what an anchoring bias is. I'm not trying to attribute every single thing I went through to Covid, but I got Covid, and three months later, I had stroke. It's strange. It's in the differential. It's in my differential, for sure. Well, and I don't necessarily sit here and say, like, long Covid is the answer to everything, but do I think I'm still experiencing complications?

[B]

Potentially?

[C]

Like, yes, potentially.

[D]

I've talked about this before where I think we have to Value patient experience similar to how we value what the medical system has put in place to help care for patients. Because doctors, at the end of the day, we are just doing our best to work within the bounds of what we know. And a lot of what was going on in early Covid times when we were talking about Monday morning quarterback, right? Yes. It's easy to look back now and say, oh, I can't believe we did these things, or, I can't believe we didn't know about these things. You do what you do with the information you have at the time. And I think that's a lesson to for today, but also to understand that not everything has a diagnosis. And that's what's probably the most frustrating part of your story. Chan, I imagine that to this day, you've seen how many doctors and can you definitively say what was wrong or what caused this?

[C]

Right. I can't really. And people still ask me all the time, like, how did you lose your eye? Like, what's wrong with you? What disease did you have? And I can't give them a small answer. But like you said, it's not a bad thing. Because even if I had something, a label, right, like, say, telosa hunt, one of the things they thought I might have, it doesn't really give you a ton of clarity about what's actually going on or how you can actually fix what's happening. I had so many doctors tell me that they could fix me, tell me that there was a solution. And I'm appreciative to them for giving me hope, not trying to bash them in any way. But what I've kind of learned over the years is that there's really not a magical solution when you're dealing with such a mystery illness. That's not going to stop me and others from pursuing it, because who knows, right? Maybe there is a magical diagnosis and treatment that could solve all my problems. I know that other people have found it, but that's not really what I'm interested in anymore. Like, I'm interested in not so much putting a name to what's going on with me, but just finding a way to make it livable and make it better. Not fixing it completely. I just don't even think that's a possibility in a way. I don't even think we have, like, all the research and all the answers as to what's going on with me just yet. And it's almost comforting when people admit that they don't know what's going on and they haven't seen someone like me because based on everything I've seen, that's the truth. That's the truth. And we need to start there if we're going to have an honest conversation, an honest and productive conversation about what's actually going to work. You know, giving me six more months of corticosteroids. That is standard of care for inflammation. But it's. I can tell you right now, it's not going to make me any less blind. Right. It might have worked for someone else, though. And that's important to note. These aren't bad providers. These aren't bad doctors. It's just frustrating. Like, not everyone can fix you and you have to figure out how to be okay with that and how to advocate for yourself at a certain point. So I'm not super mad that I don't have a really clean, pretty diagnosis. I have a sense of what's going on. You know, we've been able to say possibly Covid related, possible pseudo tumor. We've been able to cut it out. We've been able to say it looked like wet cement behind your eye. So that's good enough for me. It's no longer there. I'm happy. And now I have. I know people can't see me, but I have tons of fun eyeballs, little sparkly prosthetic eyes.

[B]

I wondered if that was like, sparkle or like. That is so cool.

[C]

Can I see a comment? Yeah. Oh, my gosh. Absolutely.

[D]

I'd like to get into a little bit of a backtrack into why Chan has this collection of amazing eye patches. Because she is a beloved figure on TikTok with hundreds of thousands of fans who have followed her on this journey because she had the courage to show up as someone with a visible disability on TikTok and really bring people along on this journey.

[B]

Chan, what's your.

[C]

What's your account?

[B]

I'm following you right now.

[C]

I'm Chan C H A N plant P L A N T E on all platforms.

[D]

Tell us about your decision to make this story public and take people along on your medical journey.

[C]

Yeah, it's so funny because I initially started making TikTok videos specifically in 2021 when I was in the Mayo Clinic just to kind of update my friends and family because it was a much different space on that platform and just that was really a place where I felt safe to, like, be silly and relatable. Like, I wasn't going to post on Instagram. Like, me with my head all bruised up and, you know, I wasn't feeling or looking my best. So that platform was where I decided to just be honest and real. And one of them accidentally went viral one day, and I was like, oh, this is nice. And actually, I was able to connect with so many people within the chronic illness and disability communities, which was so helpful for me because I didn't know what I was doing. I didn't know what MPO meant. I didn't know any of the medical terminology. I didn't know about advocating for myself. These people really taught me so much about just how to stay strong, how to be resilient, and how to navigate the system, because it really is such a skill, and it's helped me tremendously in a very tangible way. So I've tried to continue to tell my story and tried to maintain some of that authenticity. And I've kind of maneuvered over to beauty as well. Beauty content and, you know, showing off some of my differences, some of my visual differences, Having one eye, and even when I had an eye that looked a lot different, you know, I was doing makeup on that too, because I. I wanted to love myself and I wanted to show people that they could love themselves, too. And again, the community has been amazing. And I feel like if you go through the comments, we've cultivated, like, such a kind corner of the Internet, which is very unusual, especially, like, I work in media, and it's just, you never see that, like, oh, people are being nice to someone who, you know, looks a little bit different.

[B]

And you feel good. Now you feel good.

[C]

I still feel really sick. Like, I still get energy crashes a lot, but the pain is gone, and the quality of life is 10,000 times better than what it was. So I'm very happy. I'm trying to navigate chronic illness life. I don't think I'll ever stop.

[D]

Well, Chan, anything else you want to let our listeners know about? We have a lot of people, women in particular, who are really on a frustrating medical journey themselves. What piece of advice would you give to them?

[C]

It's really hard to stay positive. I think that's one of the things I've been trying to be good at throughout this journey. And it really just starts with the little interactions. Chronic illness is such a. A roller coaster, especially when you aren't getting the answers you want, and it really beats down on you, and it can really, you know, strip you of the hope we were talking about earlier. So, you know, be nice to your barista, have those kind interactions with your nurses. Fly home to be with your family if you need to. Those were the things that ultimately kept me going. And I wasn't cheery and sunny all the time. I definitely had really dark moments. But you need to find light. You need to find support if you're going to get through it. Like, you can't white knuckle it without any kind of joy, without any kind of levity. Nothing. I don't want to say nothing is that serious because it really was very, very serious for me. But, like, we still found time to, like, laugh in the hospital. And even when I was in so, so, so much pain, like, there were some good moments in that, too. Pain kind of transforms who you are as a person.

[B]

Yeah.

[C]

It makes it really hard to, oh, be silly and goofy, but little things, little things every single day. It's so helpful and it's what got me through because this was a lot and I'll be dealing with it for the rest of my life.

[D]

Well, thank you so much, Chan, for sharing your story, for being so vulnerable and being such a role model for people of all ages and all abilities to show that you too can turn lemons into TikTok stardom. And I really, I really hope that everyone follows Chan and connects with the episode.

[C]

You both are, too. It was so lovely meeting you, Anna.

[B]

I know.

[C]

Can we.

[B]

I feel like we're besties now.

[C]

We're all besties after that. I'm so sorry I kept you for so long, but I just am obsessed with both of you and this was genuinely so, so much fun. I really appreciate you guys.

[B]

The Medical Detectives is a Soft Skills media production produced by Molly Biscar. Sound designed by Shane Drau. If you have a medical story you'd like to see featured on the Medical Detectives, please email it to Stories Medical Detectives Podcast.

[E]

The information provided on the Medical Detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors. And no doctor patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show. If you are experiencing a medical emergency, please contact emergency services immediately or consult a qualified healthcare provider.