The Medical Detectives - Emily's Story: Diagnosed by a Podcast

Episode Date: July 30, 2025

In this episode of Medical Detectives, Emily shares her staggering 17-year diagnostic odyssey, starting at age 17 with a seemingly mild ankle sprain that never fully resolved, and winding through years of dismissals, generic compression socks, and contradictory specialist visits. Through her story, we uncover the compounding harm of miscommunication, underdiagnosis, and the dismissal of patients. But everything changes when Emily hears an episode of this very podcast, which sparks a realization that ultimately leads her to discover that she actually was diagnosed five years ago, it's just that nobody took the time to tell her. Have a medical journey to share? Email us at [e-mail]. ***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 pro***

all right i'm going rogue which makes my producer very nervous very nervous but i have but i have a prediction okay and i wanted to make the prediction before before we brought the guest on okay and And my prediction is that this episode will be like the pinnacle of our podcasting career. What? Yes. Yes. I think we are reaching like the zenith. Well, now I need to do a good job.

Can't phone it in this week. I did all of this just to wet your appetite. but I cannot wait to start this conversation because I can't wait for us to get to the end. Okay, well, I'm excited. Let's get into this. Let's do it. Hi, Emily.

Welcome to the medical detectives. Thank you for joining us. Thank you for having me. Well, Emily, we like to start the show usually by talking about you when you're a bit younger and summer vacation right now for a lot of kids. So what would you have been doing on summer vacation as a kid? I spent a lot of time outside as a kid. So that pretty much remained the same. Up until I'm in high school, I have my first ever job. And I work at a local library. And I very

distinctly remember shelving some books in the children's unit. So all the shelves are very low because children are not very tall, typically. And I'm kind of kneeling on the floor. And when I go to stand up, I press my left ankle down into the floor kind of awkwardly. And it does that little pole where you can tell, like, you probably just gave yourself a very mild sprain kind of thing. And I say mild sprain very specifically because I don't remember ever mentioning it to anybody. like it doesn't even hurt after like the first day kind of thing it does swell up a little bit the pain

goes away but the swelling never does did you have bruising no not really just very mild sprained and was it still painful no after like that first day or two it mostly backs off again i just thought it was a very mild sway and the fact that the swelling stayed around was kind of like that's weird but initially I just kind of brushed it off, thought it was kind of, you know, just part for the course. That's what happens when you spray an ankle, right? But the fact that it never went away. Like, I'm talking weeks later, like, I'm trying to go to prom and, like, my strappy shoes or digging into my foot because it's, like, swelling around the straps, kind of. Did you ever go see someone, like a medical professional about it?

Nope. So again, I'm about 17 and it doesn't hurt. So I figure, like, maybe I'm, I just missed up my ankle a little bit more than I thought. It doesn't hurt, so it'll probably sort itself out pretty soon. And again, cannot stress this. I'm 17. You know, I'm trying to finish up school. This is about, like, we're moving into the summer where I turn 18. So, like, I'm thinking about going to college. I'm doing my senior prom. I've got so many other things going on. And this isn't really bothering me that much. So I'm mostly just ignoring it. Does anyone else notice it? Yes. So eventually it's kind of over the summer. I had switched jobs. I got a job at the local bank just for the summer. And so I'm wearing like flats and things. And I went to my grandmother's house for some reason. And she looks at my ankle looks at me and goes, honey, you have to take care of your feet so they can take care of you. Why is your ankle all swollen? And I'm kind of like, I don't know. It just sort of has been. So I talk to my mom who gets me an appointment. with the hospital.

I do remember that it wasn't with my regular pediatrician. The person who ends up seeing me is, I have a very odd memory of him making some comment about coming out of retirement just to kind of do this for a while. I'm thinking that the person who would normally be in that office was like out for a period of time. But it so happened that he was a juvenile rheumatoid arthritis specialist.

But you were meant to see just, your general pediatrician, but instead you had a sub who was a super sub-specialist in juvenile rheumatoid arthritis. I will be so honest with you because I was like 17. I did not make this appointment. I have no idea what my mother asked for. She was just like, I made you an appointment and I said, okay, and then I got in the car. You know, I miss those days. I miss those days where people just figured my life out for me. Oh my God, right? Fantastic times. I miss it so much. So the good news is he takes a pretty good look at my ankle and the rest of me and says, you know what, that is almost definitely not rheumatoid arthritis. It just does not look correct for that.

He did give me the advice of, oh, well, to strengthen up your ankle, try spelling the alphabet with your foot in the air. And he might have also been the one to tell me to try sleeping with it at night because I do remember trying that and being like, oh, it was kind of helpful. And he's like, great. I'm going to send you somewhere else though because it's still super weird that it's happening. So he's prescribing some exercises like a form of therapy to get your ankle moving, but it doesn't sound like moving your ankle was an issue. No, did he tell you to put your legs up the wall to like get the fluid to come down? No, this was very specifically like put a pillow under it at night to see if that helps. So elevate. He has you moving your ankle and elevating it.

Yes, but he says, still super weird that that's happening. And again, hyper-localized to, like, one area. So he sends me for what I'm guessing is a tiny MRI. So it's like a little machine. I put my leg in there. I remember they like packed a bunch of beanbags around it so I can't move. Those are, they're called limb-specific MRIs. And with conventional MRIs, there are people who are like claustrophobic.

There are reasons why you may not be a candidate for the traditional MRI. and so, well, I wouldn't say the quality of the images that come out on the limb-specific MRI are better than the whole-body ones. They are an option. All right. So you get your mini MRI and what happens? So we do a follow-up and they go, okay, so we didn't find anything, but you could potentially have a blood clot somewhere.

So if you feel like you can't breathe, if you feel dizzy, if you feel pain in your chest, go straight to the emergency room. could be dying, but like, probably not. Just chill. Just chill. Yeah. Just immediate death. Basically, they're like, you could be dying, but, you know, don't worry about that. We're going to get you in for a chest x-ray at, like, the fancier hospital nearby. So they want to take an x-ray of my chest just to make sure there isn't secretly a blood clot

somewhere in there or make sure there's nothing else going on in my chest that could be causing this. So I have to wait a couple weeks for that, but they send me to the fancy nearby hospital. they take a look and at the follow-up appointment for that they say yeah so we didn't find anything so probably not the blood clot thing

you can probably stop worrying about that but since we can't figure out anything else I guess it's just lymphodema now which... So they just went straight to lymphedema? Yep, yep as far as I know like I just remember having a follow-up

and they're like well I guess it's lymphedema because we couldn't find anything else And I do remember kind of thinking that's weird, that, like, you have no way to test for that. You have no way to rule out anything else. We're just, like, so sure this is it by process of elimination, I guess. But again, I'm like 17, 18. I'm not going to question a doctor. And I'm not going to ask follow-up questions.

I don't even know what follow-up questions to ask. I don't even start having those questions for kind of quite a while. Because do you know, that's just not what I had going on right now. Could you describe a little bit about what the swelling looked like? Because for people who may not have ever seen something like this before, when we describe swelling, we will sometimes talk about if it is pitting, meaning if you put like a finger and press down on the area of swelling, if it leaves an indentation of where the mark is. or was this just all swollen? You couldn't even like press down on it and get like spongy. Okay, so it's kind of weird, and I think that's why everybody gets confused about it.

So I have no pitting. It is the one thing everybody always looks for. Every time I show someone on my leg, they squish it. It's like the first thing they do. They give it a squish. Like a cantaloke. That's what we do. We squeeze it like a canadloat.

Exactly. So no pitting, meaning like the mark never stays. It doesn't stay indented or anything around the indentation, where you would have pressed on it. But it is fairly soft. So sometimes the swelling feels very firm. It doesn't. It's relatively soft.

It's not even particularly warm the way you would expect with, like, an injury. And so everyone's just like, hmm, that's weird. And then nobody does much else about it. And they still call it lymphedema. Yeah. And they give me socks. Congrats. Those suck.

Yeah. I'm familiar. Describe to anyone who has never had to put on a medical grade compression sock what it is like. So super fun fact, these are not medical grade. They're like, oh, you don't really need crazy compressions. You can just get like generic ones from anywhere, honestly. Like they don't even give me real ones. I'm angry.

Baseball player tube socks? A little bit different than that, but basically, yeah. Okay. For those of you who want to know about compression, because this is my hell that I've been in for a very long time. time, it is tight. It is hard to put on. And oftentimes they even have garments, which are called donning garments, because they are so tight, that help you facilitate getting this really tight elastic tube on your leg. And it's graduated so that it's tighter at your ankle and it pushes the fluid up towards your heart so it can be, you know, gotten rid of. So it is very surprising

to me as a person who knows a lot about compression, that they told you you could just get whatever, that they didn't give you a weight. Usually there's different weights that the compression has for different conditions. So they weren't like, oh, it needs to be 15 to 20 or 20 to 30. They didn't tell you any of that. They just were like, go buy a pair of socks at the grocery store. Like that is, especially if they think it's lymphidema, wild to me, absolutely wild. So I guess in their defense, they may have given numbers like that to my mom who then bought them, but they did not give them to me. They also did not really give me any other information about this, like when to use it or anything that I should be on the lookout for. Like, they give me no information.

They're just like, I guess this is it. Here's some socks. So the only thing they've told me to do is at night. So I'm like, should I just be wearing the socks at night, though, with the elevation? Like, is that what I'm supposed to do? And again, nobody has explained this to me. So that's just what I do. Okay.

And to be honest, I think your experience is super common, right? And that most doctors, their communication is with the parent. We are supposed to be including and educating and talking with the primary patient, which is the child at this point. But you're 17 years old. you are the adult. So this to me is a little surprising. Question, did they have you do any manual lymphatic drainage? Because that's like pretty much as well. No, they gave me socks. Uh-huh. Yep. Nope. I see your face. I'm, I know that not right. That's all I'm going to say. So fast forward,

I'm in college. I'm again, not super paying attention to it. I'm doing the sock thing, I guess. But like, let's be honest. I'm in college. I have many. other things to think about other than the fact that my leg is weird but not painful. So, you know, again, priorities. And I cannot stress this enough. I'm like 18 to like 22 at this point. Look, none of us made the best decision during those times of our lives. Correct. And I definitely made a lot of like well-informed medical decisions and followed up with so many doctors. That was definitely not what I was doing. So fast forward a little bit more to I'm now in my like early to mid-20s. and I've graduated college.

I have a job with my very own health insurance, and I decide one summer, because I didn't work summers at that point, that I'm just going to get so many questions answered. I had a couple different medical things going on, and I'm like, I want answers. I want answers, and I'm going to find them. So this is me now trying to navigate the health care system

on my own kind of for the first time. As a young woman, I don't have my mom making appointments for me. have my mom figuring things out for me or helping me to figure out what I maybe need to do next. I'm just going for it. So I see this PCP who admittedly was not very helpful, but what I quickly learn is I have very nice insurance. And so I can kind of do whatever I want. He doesn't have to tell me to go see a specialist. Like I don't need a referral. There are some stipulations on that, but so long as they're a network, I can kind of just go. So this is how I end up at the first quote unquote vascular specialist. So I remember going in. I think I had a consult with

somebody and they sent me literally down the street to get another hospital to do a full ultrasound of my leg. Well, I mean, when someone suggested blood clot, that is the number one thing you're supposed to get is an ultrasound of your legs. I mean, you said chest x-ray. I'm a I'm hoping they sent you for a CT androgram because that's, you cannot tell whether or not you have a pulmonary embolism from a chest x-ray, and I wouldn't expect you at 17 to remember the difference between, you know, the two. But for anyone who is considering a possibility of blood clot and leg swelling, the leg ultrasound is the fastest, easiest, cheapest way to rule out a blood clot. Here's what else is wild about that. You also usually get an ultrasound if you have

lymphidema. So they can look at where the fluid is pooling for either of those things. I would have expected an ultrasound. This is my first one. Yay, me. So yeah, this is my first ultrasound. Super fun. And I very specifically remember that they started kind of like mid to low in my foot near my toesish. And they go all the way up to about my mid thigh. They do the whole thing. I go to the follow up. And at this follow up, they go, we didn't really find too much other than And it looks like you have maybe some Venus insufficiency, which they explain to me as basically like your veins, take your blood back to your heart. And along the way, they go through these little gates sort of that kind of open and close to keep your blood from flowing backwards. And mine just don't quite close the whole way and gravity works.

So, you know, we're just getting some like, it's like kind of just pooling in my ankle because that's the lowest point, right? like my ankle foot area is the lowest point. Have you tried compression socks? Weezing, wheezing, wheezing, okay. Did they at least tell you what grades you should be using? I do think they said 20 to 30 at this point. Okay, that makes sense. Yep.

And they're like, again, though, you can get these kind of from anywhere. Like, we have a place around the corner that you can get them from, but you can also just sort of like 20 to 30 is not difficult to get your hands on. Just get them. And at the time, you know, it made an amount of sense. Like, I understand how gravity works. I understand the basics of how a vein and artery and stuff should work. Like, it makes sense, I guess.

The fact that they're just telling me to get more socks is super frustrating. But I guess I got an answer, right? I want to just intervene here because people may be a little bit confused between the difference between the lymphatics and the venous system. and they're very intertwined, but you can think of your body as having like two cleanup crews, right? And the Venus system, that's kind of like your storm drains, right? You have like Churchill downpour, all the fluid goes down the storm drain.

It goes into the sewer system and it goes back into the plumbing system. And that's kind of what the veins are. But sometimes the storm system gets overwhelmed, right? and fluid doesn't go down the drain, and it kind of puddles on the sidewalk. That's where the lymphatic system takes over, and they're like little mini street cleaners with vacuums, and they're trying to vacuum up all the puddles, and they're trying to both get the fluid out, but also take away the debris. So they still will clean up all the puddles and take the fluid back to the main plumbing system, but then,

they also clean up the debris, which can be bacteria, which can be dead cells, right? So that's kind of how you think of those two systems. They both help in getting the fluid moving, right? The circulatory system is supposed to go in a circuit round and round. And when there's issues with either the venous, either they're thinking venous insufficiency, meaning the veins just aren't functioning properly, or the lymphatic system, which is what lymphedema is, is like the puddling of the excess fluid, that can cause swelling. That makes a lot of sense.

So nobody talks about the lymphedema diagnosis. I sort of assume like, oh, okay, it must have been, like they must have gone the wrong direction with that. They never, they never looked high enough to find this venous insufficiency before. So I'm kind of going with, okay, it's not lymphodema, it's venous insufficiency, but the outcome is the same. I have more socks. Love compression socks so much. And it's also like, I get this, I get this kind of answer. And again, who am I to push back and ask questions about things? And at this point, I don't even necessarily have questions. Like, it seems pretty straightforward. But over the next few years, I kind of notice how much my leg can vary and how much it swells. So like heat

makes it way worse. Walking a lot can make it worse. Like, God forbid. I go to a theme park in July or the beach. Like that super sucks. All of that can make it so much worse. The summers are obviously the worst part. And especially trying to take a shower in the summer is brutal because the swelling will go all the way up into my knee. So like my knee is hot. My knee is sore.

It can hurt to bend. Luckily, it doesn't seem to last too long after a shower. But like I have to really want to take that shower. Does it feel tight? like kind of like a water balloon sometimes yeah so like when it gets particularly worse like when it does like kind of like a big swell event because I've done something that's when I notice it the most because when it kind of goes back down to just what is like the normal amount of swelling I mean granted zero is normal but for me my new normal is some I don't seem to notice it so much

unless I try to like really flex my ankle this is also the point I remember the swelling kind of breaking into my toes and i want to say it was over the course of like three or four days i mean it was awful the ache was like bone deep and it felt like i somehow stepped on a bee on every single one of my toes because like it's like now that like balloon sensation that you're talking about that's now in my toes which it wasn't really before and so now my toes are really swollen it's like it got worse swelling is swelling is intense i think a lot of people who never experience this never know, but it feels, it feels like your body's going to break. That's why I use the balloon example, because I feel like it's that hesitance of like, is it going to pop? Even though it's not,

right? It's not going to pop, but it feels like it. So I totally get the pain you're referring to, like that beasting kind of pain. After a couple days of this, the pain stops, but the swelling doesn't, kind of just like my ankle back in the beginning, except the pain was way worse when this was doing that. But, you know, I'm wearing my socks, so that's what I'm doing it. Yeah, I'm doing it. Clearly, the socks were not that helpful. So, again, I'm now, like I've moved around a couple times. I have a couple different doctors, but I am roughly back in the same area as when I started.

But the place that I end up going to, I'm guessing this is a place where they kind of, I guess I want to say train new doctors. like, I never see the same doctor twice. Like, it's just sort of a general, like, all they really do is physicals, and they just always have a rotating group of doctors in and out. You might have been it, we call it resident clinic, where it's staffed by attending, but it is run by the residents. That could very well be that feels correct. The only reason I bring that up is because every single time I went,

I saw a completely different person. And so I see this random, I'm assuming doctor or soon-to-be doctor lady, she comes in and she takes like one look at my leg and she's like uh that's super weird and i'm like thank you and i'm paraphrasing she was more professional than that but i was like yes i i know it's my leg how old are you at this point um at this point i'm probably 27 okay um but you know everybody i talk to does not seem concerned it seems like i have a diagnosis i have my socks and who am I to question a doctor who gives me socks? Here I am.

Yeah, sorry, the humor is how I cope. You know what? Welcome to the club. So I see this doctor who immediately, she's like, that's not correct. And I'm like, okay, great. I mean, I'm with you, but like, we've done this, right? She does kind of a brief, I guess, like, strength test.

Like, you know when you go see the doctor, and they have you, like, push and pull on your arm? arms to like, she does the same thing with my legs. And she's like, you don't have any limb weakness. And I'm like, no, I don't. It's just real fat and puffy. And it's in my toes now, which is so great. And she's like, uh, so I'm going to send you to a specialist. And I'm like, okay. What kind of specialist? A vascular specialist. Yep. So she sends me to another vascular specialist, not the same one because I probably would have been like, I don't know what they're going to do, but okay. So they once again do an ultrasound, but this time they do an

ultrasound starting all the way at the bottom, you know, in my foot. And they go all the way up into my abdomen kind of close to my belly button. Which is a full exam. Yes. Yes. It's almost like that's where the entire vein and artery go is all the way up to that point. It's crazy. I know. So they do it the whole way up. I go to the follow up. And I'm seeing this male doctor guy who just starts going on about exploratory surgery. He does not tell me what they found on my scan that would make it so interesting to do exploratory surgery. He's just going, oh, yeah, no, like we can do the surgery. And if there's anything in there that we feel is weird, we can totally fix it while we're in there. So in that moment, speaking to the doctor and he's going, hey, there's some

exploratory surgery. And if we're in there and we find something, like we're totally going to fix it all at that moment. And I think I just sort of assumed, like, okay, so, I mean, it's, it's bad enough that you've got to go looking for something. And on the one hand, it felt really good. It was really, really validating. Because, like I said before, it, I'm not crazy. This is more than sucks. Like, we have to go up into my veins and take a look around. Like, that's not just sucks. That seems kind of more serious than that. On the other hand, kind of scary, because, again, he didn't really explain a lot of things. So the idea of like, oh, we have to go in there and just poke around a little bit was like, oh my God, what are we going to find? You know,

kind of horrifying. But I didn't really have a lot of time to panic about that because it was kind of like, what do you think about the surgery? And I said, yeah, sure. And it was like happening. It was a really fast turnaround. And I need you to know that the me and my mid-30s would have so many questions. I would have asked, like, what did you see that made you think that? Why? Why is this the solution that we're doing? What are we looking for while we're exploring? But I didn't ask any of those questions. I am so desperate to just hear, yeah, no, we can maybe do something about that, that I just go, okay, sure. See, that I would not feel good. The only other person I've ever known who's had exploratory surgery, it all went very, very wrong. I feel like this is,

How common is this, Aaron, like that a doctor's just like, we're going to go poke around in there? I mean, some tests are diagnostic and therapeutic. So, for example, this is very common with like heart procedures, is they may do a diagnostic angiogram, take a look, and if there's an area of stenosis, they may then put a balloon as a therapeutic measure. So I wouldn't say that's so, you know, I'm not a vascular surgeon, so I don't know if that's also similar for how they do with baines. But I do know for, at least for the arteries, the cardiothoracic surgeons, that is part of, you know, we call it diagnostic and therapeutic intervention.

So it may not be that weird then. The crazy thing was I didn't even have time to check with my insurance company because they had scheduled it so quickly and it was like right around the July 4th holidays. so there was no one at the company for me to call. So my partner and I looked at each other and said, well, you know what, if I could finally have some answers and finally get this to be less extreme, it's worth doing and we will figure it out later.

At least that's what we said. So the surgery is scheduled for July 5th. I have to be there at like 7 a.m. or something. And they take me in. They put me under like a twilight sedation kind of situation. So like I'm kind of awake, but I am several layers removed from my conscience. So I wake up in this little like two bed recovery area and the nurse as I'm kind of coming to

is like, oh, hey. So yeah, your vein was like way smaller than it was supposed to be. So we went ahead and put a stent in there. And at the time she says it's like a third of the size it was supposed to be. And I remember thinking like, wow, this is so incredibly validating because like, look at that. It wasn't socks. The answer wasn't socks, right? I'm not crazy. The answer is not just socks. So right afterwards, I'm doing the general pain of, you know, recovery kind of thing. I've got like a chunk of metal basically in my hip now. So having my body kind of get used to having that around, like, you know, general aches and pains, but like I do pretty well. What I do notice is the swelling up into my knee is not really happening anymore. Like my leg is overall much more

stable. I don't have the wild fluctuations in the swelling. Again, it's not going up into my knee anymore. But like, it is still swollen. Like my- So an improvement, but not a resolution. Correct. So, you know, and I don't know if maybe I had told myself, this is going to solve all my problems and then it totally didn't. But, you know, you have to have several follow-ups because they placed a stent. So they want to make sure that, you know, you're not randomly forming blood clots. you're not somehow like obstructing the stent. It's definitely where they put it and it didn't move anywhere kind of thing. So every time I go in, I remember asking the doctor like, you know, this is good.

Like here's all the positives. But like what happened? Like how did this happen? And why is my foot and ankle and toes still all puffy and swollen? And he asks me if I was in an accident, like if I was ever in a bad accident. And I was like, no. I wasn't. And he goes, weird. Well, we did everything we can do. So, you know, we can get you fitted for some more socks. Here's the solution, guys. Just custom socks. You just didn't have the

custom socks. So what's crazy is in the office, they have some random lady, some random young woman who does measure me. But the measurement ends up just being like, yeah, you can literally just buy these socks anywhere. Like, here's like roughly the amount of compression you need. So I'm like, so there's nothing to be done here is what I'm hearing. Like, it doesn't matter what I do. This is how my leg looks now, I guess. And all I can do is wear socks and hope for the best. And I mean, again, it is improved.

You know, I'm not like upset that I had the surgery that I did all that and nothing even happened. But at the same time, it's not quite what I wanted. And at this point, again, no one's talking about lymphedema with me. Everybody is talking about the venous insufficiency, but they're not even using the words, they're just like, yeah, your stead looks great. Like, we are just talking about the stent and how it is in there, and it looks great. And what's crazy is, I have my medical notes from this time, and he just says, she's really happy. He never even mentions that I'm not happy with how puffy my foot still is. He just completely bypasses that and was like, nope, we got it, guys,

we're good. So at this point, solved it. Yeah. I will say that there sometimes is a dichotomy between how as a surgeon, we think the post-op recovery is going versus how the patient is actually feeling. And you can have a very successful surgery, but an unhappy patient. So this is, and I'll use a patient. Actually, I didn't, I wasn't their surgeon, but they were coming into see me for issues. When I saw the hardware, the hardware was in perfect position, the bone was healing, but the patient was miserable. And she went on to develop something called CRPS or complex regional pain syndrome. I think we've even talked about this before in the show. But I make it a point in my notes to separate the two, because the two things can be going on at the same time.

The surgery itself and the outcome of the surgery, like technical wise, can be successful. but the patient's experience of how they're feeling and their recovery, you should be noting both things. And I think a lot of times the surgeons will just comment on how well the technical aspect of the surgery is going. You know what this reminds me of, kind of like Amelia Bedelia, right? So like the surgeon is like, did I do exactly what you asked me to do? And did that go correctly?

Yes. but sometimes that's not what was actually needed. Not that they did anything wrong, but like they did exactly what they were told to do. And that to them is success. But realistically, sometimes that's not what the patient needed to feel better. You know what? I think that's accurate.

What kind of happens next is I start to feel a little hopeless because I bring it up and he's just like, I did what I could do. And there isn't anything else to do. so I kind of just stop asking you know some of that some people please you've gone you've gone through all of the seven stages of misdiagnosis you've gone from denial to doubting to anger to depression and now you're an apathy you're done you know what don't worry we're going to go for round two so because it's a cycle because it's a cycle it really is so I kind of stop asking what can be done every year I have to go in. I get my scent checked. And they go, you look so great. And I go,

gee, thanks. And then they go, okay, great, we'll see you next year. Make sure you wear your socks. It just reminds me of like, no offense, Aaron. I love you with all of my heart. But surgeons don't exactly have the best, like, rep. So I could just see them going like, yeah, that stent I put in. That looks awesome. It's still working. It's so crisp. I did a great job, pat on the back. Because that's all they're looking at probably, right? Yes. Literally every time they're like, oh, the blood's moving through it so nicely. You don't have any blood clots.

It's all so great. And I'm just like, okay, great. Not the problem I'm talking about, though. I still have to wear these damn socks. Yeah. And again, they're just like, do you need more socks? We can totally give you more socks, even though you're just wearing generic ones that you can literally buy on Amazon. And I'm like, okay, great.

I know how, I'm wearing my socks all day this time, I promise. I'm guessing, this is a guess on my end. I'm guessing that the practice was expanding in the next few years. And so what happens is, and again, they do not tell me this. I just sort of make a follow-up appointment and they go, oh, you're seeing this APRN now. I'm like, okay, great. My guess is, you know, they already did all the surgery on me that they could do. So there was no point in me seeing the surgeon just to tell me that my stent looks so great.

So they pushed me over to this APRN who can tell me the exact same thing that my scent is so great. So the first time I see her, I'm just business as usual. I'm like, well, we did everything we could do. So whatever. She's like, yep, your scent is so great. We'll see you next year. I go, okay, great. The next year, I don't, this is like, hmm, I'm going to say, 2023. I see her again. And I guess I must have been feeling

spicy that day. She, she, she, she, you. you know, does the same, like, you know, how are things going? And I'm like, well, I wish my leg didn't look the way it does, but there's nothing we can do about that. So, you know, I guess I'm doing great. And she kind of looks at me and really looks at my leg and goes, no, we can absolutely do something about that. And I just remember staring at her in so much shock. And internally, I am screaming like, I'm sorry, what? Like, I have been asking at this exact same clinic for actual years. And you're telling me we can do something about this? And so she started,

telling me about how like, yeah, well, you know, lymphodema can happen as a result of vascular issues. So, you know, so I'm like, I'm back on the lymphedema diagnosis and I'm like, okay, did not see that when coming. And she's like, no, like there's physical therapists who specialize in that. Like, we can get you into some great physical therapy. We can get you into these like pneumatic compression garments. We can do all these things. And I'm like, what? This was an option? Yeah, it's very shocking that no one put you with an MLD therapist, a manual lymphatic drainage therapist, nobody put you with PT, nobody put you with an OT. Well, Anna, they didn't even tell me what I have.

Like, I'm just now finding out that I have lymphedema, like I had the whole time. Wait, so you do have lymphedema, for sure. Or you think you have lymphidema. At this point, they're just going, lymphedema's common with vascular issues. And again, like, I don't have any of the pitting or anything. So they're like, we're going to set you up with, like, lymphidema things. to help. Because even if that's not entirely correct, like the therapies would help. Yes. Okay. Gotcha. So I end up getting super lucky, like 10-ish minutes from my house. They were just starting up

a new lymph specialist. So I'm like one of her very first patients. And I go and see her. She is phenomenal, by the way. We do like a ton of measurements. And she's like, yeah, like I really think we can make some progress here. And I end up doing this kind of specialized like mummy wrapping is the only way I can describe it. It looks kind of insane. Like when you consider how small my leg is versus how big it is by the time we are done because it's like 8,000 different layers of bandages and foam and tape and like I don't even. And the thing is every body is different. So we're just like trying stuff out this lovely lady and I. So like every time we come in, she's like, okay, so what worked? What didn't work? Okay, we're going to try this now. So like,

cue the kinesio tape. Cue like these little. carrots we put on my toes that are just like tiny like orange foam pieces like we are doing all sorts of stuff and this takes weeks and the reason it takes so long is a she's trying to make as much progress as possible and b we are now waiting for get this customized compression garments that are made specifically for me crazy i thought they were going to do that when they when they measured you the first time what i will say for anyone who is totally unfamiliar with lymphidema just to do a little bit of education. Now, lipidema is a different condition, but we also get bandaged. So there are things called leg kits. They do come with different types of foam that allow a specialist who

knows how to wrap. Usually these are manual lymphatic specialists. They will wrap a variety of like a piece of foam core. And then they will do different wrapping techniques with different levels of stretch ace bandages and other bandages to try to compress and recreate what you would get from a compression garment with an actual garment with an actual bandage to your leg. Why this tends to work a little bit more effectively than a compression garment is, is because it is fit exactly to your leg. And in some cases, they do both where they put either a compression garment underneath or over a bandage kit.

So it is a more intense form, and she's probably, you know, or she was probably, she was actually trying to see plying pressures and different types of compression on the body would actually move fluid, which is really cool. I mean, it's an art and it's a totally underappreciated art. Genuinely, yes, all of that. She was trying absolutely everything she could think of. And I have to say, I made a lot of great progress about halfway through this first physical therapy round, I can, like, see my ankle bone again. I didn't even realize how

missing it was. Like, I have, like, definition back in my foot a little bit. It is phenomenal. The one thing I'm a bit disappointed about is it doesn't quite do much for my toes. In that regard, like, I am thrilled. It's not 100%, but it's a hell of a lot better than it was. But we're not quite done. So things are better with this therapy, but I still feel confused and just like, Things don't fully make sense. And I tried to talk to the doctor before about my actual diagnosis, but it never really ended in me getting any concrete answers. I don't really know how to do it.

It certainly was not... Because I hate the idea of, like, you have to be perfect in asking your questions to your doctor in order for you to get an answer because that seems crazy. Like, I'm not a doctor. It's not my job to be perfect at asking the questions. Like, you should just be giving me answers. One of those conversations, I remember asking, like, I don't super understand what happened.

You're telling me, my vein is super small, and you put the stent in, and like, I kind of get all of that. But like, why? And what's next? And that was when he was like, well, were you in a car accident, like a really bad accident of any kind that would have affected that area? And I was like, no, why? And he just kind of brushed it off and went, oh, okay, well, that's super weird then. yeah we did everything we could do so it is what it is and like does not even want to like engage in that conversation with me and it just seemed like every interaction we had was kind of like that and at a certain

point my people pleasing tendencies kick in and it's like well if he doesn't want to have a conversation I don't want to make him uncomfortable and of course the me of now is going like that is his job to be uncomfortable if he's uncomfortable answering questions about my diagnosis then he's not doing a very good job. So by this time, I think I had sort of made a weird piece. I don't even think I made peace with it. I think I just sort of like buried it a little maybe because it sort of felt like I'm never really going to get a complete answer. And I kind of just thought, my body's just a weird little hodgepodge of a couple different things that are all happening simultaneously that are kind of related. You know, I've got this scent in here and I've got this insufficiency thing and I've got

this lymphoma. And it's just like I have a series of things. So anyways, that's kind of where I'm at when we reach the next part of the story. So I enjoy listening to podcasts when I'm doing boring activities, right? Like, I don't want to think about how much I don't want to fold the laundry or clean the floors. So I put on podcasts, right? Somebody else tell me a fun little story while I do boring tasks. Right. 100%.

Right. I think a lot of people to do it. I think it's going and I'm excited. Okay. So I was listening to your podcast, crazy thought. and you had someone on named Simone. Yes. Yes.

And I'm going to shout out your own podcast here. For those of you who have not listened to that episode, please do. She's lovely. She tells a great story. She is. It is fascinating. There's a whole bit in there before they get to her actual diagnosis where you talk about May Thurner syndrome a whole bunch.

So as I'm listening, I'm kind of hearing like, oh, that's an interesting fact. Oh, that's an interesting fact. And then they start, you know, naming names. They say May Thurner syndrome. And they're describing what it is and the symptoms that you end up having. And they were talking about how May Thurner presents, like how it's always in the left leg. And a lot of the misdiagnoses that you can get along the way. And I went, that's so weird that that sounds like me.

But like, it's not because that would be crazy, right? I remember I was folding laundry. I like straight up just stared at the speaker in my bedroom that was playing it, like it was somehow going to give me more answers. It did not, but I did throw it into a Google search and then immediately put it down and said, I don't want to look at that right now. So this would have been, I think that episode came out like February 28th of this year, 2025. So this would have been sometime around then.

I always get my step checked in April. So I straight up just put it down for close to a month. And then I'm about to go to my appointment. It's like in a couple days. And I'm like, I should really open that Google search again because if I have questions, I should probably figure out what they are now rather than have to wait a whole year. So I do. And I start reading it. And I have, I just, I basically gave myself a mini existential crisis because I made the mistake of doing this in a semi-public place.

Like to the point where like multiple people who vaguely know who I am are like, hey, are you good? Because you don't look so good. like I need you to know I took up roller skating so I'm just like at like point two miles an hour just like drifting around this rink while other people are actively working on things and I'm like yeah I'm fine because like how do you explain like yeah I might have just diagnosed myself from a podcast and I have to talk to my doctor about it but like I don't know if I want to do that I'm gonna cry now I had a feeling that this is gonna go somewhere here but like now I'm like oh god anyway keep going keep going girl yep yep so um Um, you know, I have that mini existential crisis. And then I managed to calm myself down by being like, okay, how do we talk to our doctor about this? Because if I lead with like, hey, so I was listening to this podcast, she's going to think I'm crazy. Like, who diagnoses themselves from a podcast? So instead, I go with a very direct like, like, we're like towards the end of my, you know, meeting. You know, it's the same sort of thing with like, how are things? How did all your therapies go?

That sounds great. If you don't have any other questions. And I go, okay, actually, I have one just one what exactly is my diagnosis she goes oh yeah you know what i um i just have to check real quick because she wasn't the one who diagnosed me so like she has no idea what the doctor put in his notes we've always just been looking at this stent we haven't been talking about the other things and then she was just talking about the lymphidema for a while so even she doesn't know so she's like i have to step out of the room real quick i will be right back and now i'm like hmm this is i've going to be really good or really weird. Wait, wait, one second. Aaron, is that normal to see somebody on a regular basis and not know what their diagnosis is? No, I mean, even to submit, you know,

for the surgery, you have to have a diagnosis because you won't get paid unless the CPT code matches the need for the diagnosis. So diagnosis is there. They might have diagnosed you with leg swelling. Yep. That might have been their diagnosis. Absolutely no idea because we have not had any conversations about anything ever, just kind of the lymphidema that one time. And then she just checks up on the lymphidema, checks on the scent, and we just go our ways. And her, well, no, I was going to say in her defense, but then I backtrack that, never mind. Don't defend her. So I'm very nervous. I ask the question. She steps out and she comes back and she goes, oh, yeah, yeah. So the way that your left iliac vein is compressed is because of the right iliac.

artery, so that's indicative of May Thurner's syndrome. And I was in such a state of shock. Like, this is one of those things where, like, I'm not really sure what I thought would happen next. I was just trying to get myself to the point of asking the question because, like, I'm kind of freaking out at this point. So I just go, oh, okay, great, thanks. And I left. So this was in April of this year. And of course, like, right afterwards, I'm like, oh, my God, no, I had so many other questions. Like, why is this the first time I'm hearing about this? And were you planning on telling me or was this going to be a big secret until I die? And I'm still a little mad at myself for not asking questions, but I'm like, you know what? I shouldn't have had to ask him in the first

place, and we are going to give myself some grace. And this gives me plenty of time to plan my questions for next time, doesn't it? Crazy enough, I wrote into this podcast maybe two-ish weeks ago. Yeah, it took me months to write because I just kept going back and forth on like, how insane do I want to sound? So I wrote in that email, and right around the time that I sent in the email, I got a random manila envelope in the mail. So at the very beginning of July, I think right before I submitted the email, I saw my PCP. And she was like, why don't I have any of your records?

Because I, of course, I had to tell her. I'm like, oh, yeah, by the way, I have this May Thurner syndrome. And she's like, why don't I know about this? I'm like, because I just found out, okay, Jen? We're working on it. And she's like, but why don't I have any of these medical records? Like, it's super weird that you've been seeing them for years and they have given me no records.

Like, shouldn't I also have those? I'm like, you know what? you're so right. So like I filled out the form, the medical release form to like had them send them to her. And they were like, no, we're just going to send them directly to Emily. And I was like, okay, great, I guess. So like I get this random vanilla. What am I going to do with these? Well, well, the answer is read them because at this point. Because at this point, I'm curious. I just, you know, I just sent in that email. And I think this was actually like the morning. I was supposed to do my first round with Molly. And I was like, let's just see if there's anything else. here. So going through my records, yeah. So like I had the surgery in 2018. He had noted

vessel compression, which like, yeah, correct. However, there is a mention of May Thurner's syndrome in 2020 that no one says to me. I think I was really just expecting it to be really boring notes about how much blood is moving through my stent. So the fact that in 2020, there's a note in there that says May Thurner's syndrome, I'm like, is this a joke? Like, I have, in a lot of ways, been waiting on that May Thurner's diagnosis, pretty much since symptoms came up. And the fact that I got one five years ago and no one has bothered to mention it since was just kind of mind-blowing.

How do you not tell somebody their diagnosis? How did they know for literally, like, five years? 20, five years. Like, it's in the notes as May Thurner syndrome. I'm like, it's just like a one-off line, and they never mentioned it. It's also not really in my notes again until the notes from my APRN, who was like, yeah, we had a conversation about this. I'm like, yeah, because I asked.

But there's no notes from 2018 or 2019 about that. There's just a note about me being very pleasant. This is where Erin goes on a ran about notes, where she goes on a ran about notes. Erin, it's your time to shine. I'm very particular about notes. You know, and with May Thurner, again, we need a rebrand. We're just calling this left-leg swelling disease. disease because then at least people know what it is and remember, you know, I might not have

remembered that Simone had May Thurner syndrome and she nutcracker, right? That was her eventual But that's wild that her journey towards getting her diagnosis cleared up yours. That was a big part of why I ended up writing in because I'm like, if nothing else, even if this doesn't go anywhere, like thank you guys. And if somebody would pass along a thank you to Simone, I would really appreciate that because I literally would not have answers. Honestly, I'm going to DM her tonight because I think it's going to make her life because that's why she came on the podcast originally is because she went through all of this. And if she's like, if I can help one person get diagnosed, then it's worth it, right?

And it's beautiful that this has happened. I'm sorry that it took this. 17 years? Yeah, 17 years and a podcast episode. But I think for us, sometimes like any person we go, is this really going to help people? Like, you know, you wonder. And not only does Simone have the knowledge that her story helped,

but I think for me, it helps to realize that this is not just a silly podcast. It really can help people get answers. And I think that that's, you know, we all doubt ourselves sometimes, right? We're a human, but. You're going to make me cry. But it, sometimes you just need a little reminder that what you do is important. And I think that I'm grateful that, you know, this labor of love, has helped someone.

Do feel beyond just the validation of having a diagnosis and having a name and being able to tell people, this is what you have, not just I have a big fat soul and foot, were you able to learn more about the syndrome? Have you met other people who have it? What has happened since that was revealed to you? Not a lot because if we're counting, it's only been two to three months. And I've honestly just been sort of coming to terms with the fact that, you know, I'm sure no doctor acted maliciously, but that doesn't mean that they did...

There weren't consequences. Right, right. Or like, that they didn't like, you know, as you say, like, no doctor should know everything. But it's one of the things I'm kind of coming to terms with right now is how much I just blindly trusted my doctors. And now I'm kind of like, where are the places where maybe I could have asked a lot more questions. So one thing I will say, and I've said this to other people on this podcast before, but I think it can be repeated many, many times because it's necessary to be. It is very, very,

very easy to blame yourself in hindsight. It is very easy to think of all of the times you could have done better, asked better questions, been more informed, researched more. It is so easy to go down to yourself, but that is wasted energy. Well, because the flip side of that is I was paying them to do their job. Yes. And the other perspective on that is you can't fix it now. No. Nothing you do now will change what's already happened.

Absolutely nothing. So the only thing you can do is learn from it and become a better advocate for your health in the future. And again, that's another purpose of this is every single person on this podcast, and including Aaron, has it sometime in their life probably not done something as well as they could have in the medical system, right? And I have always said that the point of either this podcast or feel better or my TED Talk or even my TikTok account was to empower patients to have better conversations with

their doctorate. And if just that little nugget of information about you heard of a syndrome called May Thurner and it sounded like there were some patterns of similarities with you, that that was what got you to open up that line of communication, right? The shame is that the diagnosis was always just sitting there. Yeah. At least for five years, yeah. You know, I've heard so many women don't go to the doctor at all because of their fear of one, one conversation.

So one of the things that I hope this also opens up the discussion is, is sometimes you have to, get over your own fear of asking the questions. Like, just like you said, like I didn't want to read about this condition because it was too overwhelming. A lot of people go to the doctor's office and they're sitting with something that could be helpful in them figuring out what's going on that they're afraid to have a conversation. I was also very worried about bringing it up and being like accusatory and being like, are you keeping a diagnosis from me? So I had to just be like, what exactly is it? Like, am I just not on the same page? You know, and some of that is the people pleasing tendencies where it's like I don't want my doctor to be mad at me because I'm

basically telling them they did a bad job but also maybe they need to hear it yeah there's a lot of mental gymnastics in a doctor's office for any any patient I believe and I mean there's a there's a power imbalance and if I have to speak to a police officer I'm nervous right and I'm you know a white woman I don't even have systemic things that would make that situation be even more uncomfortable because of the natural bias that unfortunately exists. So if you put, you know, those layers into what goes on within these scenarios where there are power and balances, it's scary. Yeah. Side note, in case I was not super clear, I do have May Thurner, but I do also have lymphedema as a result of the May Therner. Gotcha. It is, it is, I will say,

it is very wild to me as someone who's very familiar with like the lymphatic world how long it took you to get proper conservative therapies because it's kind of like oh you have lymphidema here are the four things you do right it's just very consistent like are all four of them socks yes they're all socks good great because that's exactly what I had no but I mean like they I would have imagined immediately they would have talked to you about an MLD and a bandaging person and I mean it sounds like to me, the lymphedema was a consequence of the untreated made Thurner for so long. So, you know, that's the, that's the whole point, right? It's that not only diagnosis is validating, you know, it can help prevent these secondary

problems that occur that sometimes it's the secondary things that can't be fixed, right? Right, because lymphidema doesn't go away. Correct. Yeah. So now you probably, you know, when you first started having that unresolved swelling, that was obviously the ideal time to intervene. But you had many, many years, right, of unresolved swelling. And again, I am not a vascular expert, but I don't know many 20-year-olds who are walking around with chronic venous insufficiency. All right. That's what I believe President Trump just got diagnosed. with. He's who I think of when someone says someone has chronic venous insufficiency. So when you are like 21 years old walking around with a venous insufficiency diagnosis, I was like, that does not sit right with me. I would also say too, like if it was lymphodema at that age, it would either be usually with a severe accident or if it's primary lymphedema, you would have had it

your whole life and it would have been symmetrical. So that's why he asked me, were you in a car accident. And I said, no, he's like, weird. Okay, well, here's some socks. Like, he just didn't know what to do with it. Like, I think he was expecting me to say, yeah, so he could be like, aha. And instead I was like, no. And yeah, he doesn't know what to do with that. Well, Emily, thank you so much for reaching, first of all, just even reaching out to let us know that we in some way helped you on this journey. It's just so powerful to all of the listeners because I think sometimes they think that, you know, oh, their story isn't as interesting or isn't as dramatic. And while, yes, a lot of our stories are really emotional or dramatic, it's really

about just getting the awareness out there in that even the events might not be so dramatic, but it's the feelings are what really matter, right? The feeling that you were dismissed. The feeling that they were not listening to your actual problem, right? the feeling that there was no communication. These are all the same themes that people really, really want to talk about. And I would say in your case specifically, you know, we talk about this a lot, that there is this power in knowing what you have is there's a piece that comes from it.

And so in a way, not having that diagnosis, even though you technically had that diagnosis, like on this paper somewhere, takes away peace because you don't know. know what's going on. And I think that's, I think a problem that would resolve a lot of things for a lot of patients is if the way we thought about communicating with patients changed. And I think there are great doctors like Erin and, and even Tracy, who we had on last week, who are working to improve that communication. But this is a great example of where it is still fundamentally broken in a lot of places. So. You were right.

I knew it would happen someday. I knew it would happen someday. I didn't think it would happen this quickly. Honestly, and I told her this when we weren't recording, I kind of needed to hear that. I think, you know, and we don't really talk about this often, but we hear a lot of negativity online a lot. It's nice to hear something so positive

and to see the change that this show is making. Yeah, I mean, it goes back to what. we've been saying for so long that diagnosis is power. And the sad part of the story was the diagnosis was sitting there in plain sight for so long. And it really just gets back to what I consider the biggest problem, which is the communication gap between doctors and patients. And, you know, listen, I understand as a surgeon, you know, letting your, whether it's physician associate or nurse practitioner, see some of your more like stable follow-up patients, but they are your patients.

You are the ones who did surgery. So the fact that she did not have the follow-up with the surgeon, who I'm not saying that necessarily he might have given her the diagnosis anytime sooner, but that's part of our responsibility. I also think that it should be easily accessible to see what you have. Like, I should be able to go into my patient chart and see diagnosis, do, do, do, do, do, do, in a very clear way that's written to talk to me as a patient, not as a doctor speaking to another doctor, but it should be clear because I think, again, there's power and knowledge and also there's comfort in knowledge. And if we're really thinking about putting the patients and their needs first, making those diagnoses easily accessible is important. Like the fact that it could be just buried in a document and never shared with her is wild to me.

And never her able to find it until she requested her entire medical history. And, you know, we just talked about this a little bit, but the reason why the diagnosis matters also is that diagnosis leads to prognosis, right? If you don't know what you are dealing with or fighting, you have no idea, is this something that's always going to be there? Is this something that I just got cured of? Is this something that I have to worry about a comorbidity, another problem that's associated with this diagnosis? So it's very important for you to have a diagnosis and not just, you know, this diagnosis is closer to what we would consider like a root cause diagnosis, right?

Where this is you had an artery that was compressing a vein. It's a physical problem. Now, there could be underlying, underlying issues, right? Okay, maybe there's a connective tissue disorder, why this artery was pressing on this vein. But in this case, you had a diagnosis that explained why things were happening. And the stent was at least helpful to the point where she did improve, more so than just wearing more socks. I mean, I don't really have much more to add to that other than shout out to all the lymphatic straighted specialists. I feel like we talked about you a lot today. And genuinely, we're

grateful for you. Even if that wasn't her actual, it was more of a symptom of the situation rather than the root cause. Well, thank you everyone for listening. And this is a perfect example of why we ask every week for everyone to email us if you have a story. Or we just love hearing how if we played some small part in helping you get a diagnosis or helping you feel supported, the best way to support us on this podcast at this point is to leave us reviews, to leave comments, to share this with your friends and family, share it with your doctors. If you want to hear more content like this, we really do need the support and we appreciate it. Exactly. And with that, guys, have an amazing rest of the day. I'll see you next week.

Bye. The Medical Detectives is a soft-skills media production, produced by Molly Biscar, sound design by Shane Drouse. If you have a medical story you'd like to see featured on The Medical Detectives, please email it to Stories at the Medical Detectivespodcast.com. 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

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