Episode 2: Where To Get Answers and Support From Others With Myocardial Bridges

SPEAKER_01 0:00

Donna Miranda at Stanford, nurse slash teacher, because she teaches nursing at a local college there in California. She said, Rob, you shouldn't let you know there's a Facebook site that a lot of people who come through here are on. Maybe it'll help you out. I was like, there is, you know. So and and I had just come out of a communist hospital in China was being told this is not a big deal. And so to have a Facebook site where people actually know things, and then people like Perry the Gree and Terry Tracy Crozier were on Stephanie Devereaux, were all like helping, you know, answer my questions. And so it was me. It was me. I was the one answer asking the questions for a long time. And I think what happened was just that through surgery and everything. And it just got to a point where I guess I started to know the answers to questions after a while. I mean, because I had just been asking those questions. I'm also a journalist too. So like every time I would go to like a new doctor or Stanford, I would always pester them with like dozens of questions.

SPEAKER_02 1:01

Welcome to Imperfect Heart, a place for you to join me, Jeff Holden, in conversations, discussions, and dialogue about our hearts and the impact myocardial bridges have on them. We'll talk with healthcare professionals, those in related fields that support our condition, and others just like us with stories of their myocardial bridge experiences. It's my intention for this content to inform, educate, entertain, and even motivate or inspire you in your personal journey on dealing with a myocardial bridge. Most importantly is to have you leave each episode with hope, knowing you're not alone and that what you're experiencing is real. Before I get into today's episode, I want to thank you for the comments, encouragement, and excitement for the podcast. I think the information we're going to share and the stories you're going to hear are going to prove to be real assets for all of us as we learn and grow in our recognition and understanding of myocardial bridges. With that said, I'd like to introduce my guest, Robert C. Thornett. Rob is an American educator and writer. He's also the administrator of the Facebook page, the Myocardial Bridge Support Group. He wrote the Frequently Asked Questions document. He wrote the Myocardial Bridge Wikipedia page, which Stanford has approved. He moderates the Twitter feed and the Myocardial Bridge YouTube channel. Wow. Rob was diagnosed with a myocardial bridge while teaching in China, after which he returned to the U.S. and had unroofing surgery at Stanford in 2018. Since surgery, he's active, runs, lifts weights, and travels. Rob teaches college and secondary geography and social sciences and is taught in seven countries. His articles have appeared in Modern Diplomacy, Education Next, American Affairs, The American Mind, The Diplomat, Front Porch Republic, The Solutions Journal, Yale Environment 360, Quayette, Earth Island Journal, and other publications. Rob's writing is recognized. Originally from Virginia, he's lived in Panama for the past three years. So, Rob, welcome. I am so excited to have you on the show today. You are, to me, like the rock star of the myocardio bridge support community. You are so involved in commentary and conversation with people who are sharing their information on the Facebook page that you just have such a presence. I couldn't be more excited to talk to you.

SPEAKER_01 3:44

Good to be with you. And it's nice to be able to talk outside the Facebook site because usually it's just me chatting with people and stuff like that on messaging. It's good to hear a real voice. Yeah.

SPEAKER_02 3:52

So for many of us who are familiar, we have an understanding of who you are as this person that responds and has a lot of insight and support and information for people sharing their conditions. There are also people who have no idea that the Facebook page exists as a support community, which is really the purpose of today's episode. Is when we launched the first episode, a lot of people were saying, wow, I didn't know there was anything like that out there. And I thought, boy, before we get into the continuing linear process of diagnosis to surgery to outcome, there's people that are in between this right now who could really use the benefit. And I thought it appropriate since it's heart month in February. Let's get that out there and give them the opportunity to be aware of some of the resources that are there for them as well. Before we do that, because we know you as Rob Barrett of the Facebook page, tell us your story. How did you end up with this myocardial bridge diagnosis and surgery, et cetera? Just can you walk us through what it was that was your process and how you came to be here?

SPEAKER_01 5:01

Yeah, thanks. Sure. It's a long story, I guess, but I'll try to do some snapshots through it. Basically, I I was a guy who grew up constantly playing sports and baseball, basketball, football. So all the myths, that's one myth we can get we can dispel off the bat is that if you're athletic or you work out and stuff, then you can't have a myocardial bridge because people with myocardial bridges aren't capable of doing exertion. That's completely wrong. There are professional athletes who have myocardial bridges who have had to stop doing what they're doing. So that was me. I was, you know, always playing sports, but there was always something up, you know. I always would feel like a certain level of sprinting or something. Oh, you know, like something's going on. And I was like, is it me? Am I out of shape? Am I overweight? Is it this? Is it that? You know, I but and so I got to my 20s and 30s. I started going to emergency rooms every once in a while, pointing to my chest, literally, like right where it is, where the myocardial bridge was. I had surgery in 2018. And I got the same kind of answers that so many people on our site get, you know, oh, you probably pulled the muscle in the gym, got gallstones, you're dehydrated, you know, all these types of we call it junk diagnosis. Junk, it's like, you know, the doctor doesn't know what to say, so he just says something like anxiety or dehydration, you know, which doesn't really need proof. So I went through so many years of this, and I'm 49 now. I was diagnosed in 2018 when I was, I guess, just about to turn 45. And by that point, I was teaching in China. I've been teaching in the US, but also international schools overseas. And I was teaching in China. I just came back from a high-altitude trip for a couple, I was on a break at this high altitude place in western China called Kunming. And the day I came back to regular altitude in the city of Shenzhen, I had literally the day I flew back, I had this big attack, sort of, I guess sort of mini heart attack or something, some kind of attack. I don't know if it was a heart attack, but some episode. I got real scared, called my brother the next morning. I was kind of groggy. He he he was you know worried about the way I sounded. He's like, go to the hospital. So so I went to the hospital and I bounced through three different, I think, emergency rooms in that Chinese city. Finally convinced somebody to give me the heart. First I was told I needed gallstones, and then it was I didn't have enough sleep, they said, I didn't need better sleep. Finally, I convinced them I would pay cash for a CT scan. So I paid cash for a CT scan. I paid like $700. And I had to wait days. Got the CT scan, it's in Chinese, the result, the report, and they said at the bottom, a little note in Chinese. I said, What does that note say? And they said, No, it's okay, it's okay, you're fine, just go ahead. It's okay. I said, No, what does the note say? I need to know what the note says. So I got a nurse, you know, the guy at the front desk, translated it. He said, It says myocardial bridge, left anterior descending mid-LAD. I said, What is that? He said, No, no, it's okay. They said it was okay, it's fine, you can go. I was like, No, no, I want to know what that means. He's like, I don't know. So, so I I I binged it, you know, being as in China Google's block. So I binged it and it said you could it could cause symptoms. And I said, That's it does mean something, it is a problem, you know. And so I walked out and I was literally just walked out of this giant communist hospital looking out at nothing on these giant marble steps, feeling really alone. Like it's just me and a piece of paper and a piece of film, because it was like a physical film instead of like a CD, like all your shots from your C D. In a language you can't even read. A language I can't even read. Actually, I will say the C T was a G E C T, so it was actually English, uh the techno style. Yeah, but the report was in was in Chinese. But at least I knew I had something. I now had somebody said something in a note about my heart. And I've been putting to this for for like a decade, you know, like there's something's going on here. Next couple days being that I found that Mario Cardio Bridges in Stanford, okay, Stanford University, emailed a person I found on there, Dr. Boyd, who ended up being the guy who did my surgery. And to make a long story short, they told me we need to see your CT. You can DHL it to us, you know, overnight. Or I was like, that's 60 bucks. And they said, Well, you can just take pictures on your phone. So I took pictures of each frame on my phone and sent like, you know, 25 pictures to them up against the window of my my hotel room. And they said, You need to come in. We see it. You definitely have it. I mean, it's over. Come in. And I would have just gone right for surgery, except I wanted to do robotic surgery because I read that it was much it is much less invasive. It's much easier to recover. I said, Why would I do this when I can do that? And so I kind of stalled on the Stanford. I came home to the U.S., kind of waited on the Stanford and tried to get robotic surgery in the meantime, and went to US News and Will Report, top doctors, stopped in New York and Philadelphia, who both did robotic surgery. Both of them just said, Winston, you don't have a myocardial bridge. Even when looking right at my CT, which is very obvious that it doesn't tell me, he said, Oh, you don't have a myocardial bridge. Had no idea what he was even saying. And then the other guy just said, You probably need physical therapy, maybe it's just an arm problem. They completely dropped the ball. They had no idea what they were saying. So I ended up going to Stanford. I couldn't get the robotic. Now people can. There is robotic options now. There are robotics. Dr. Guy in Georgia, University of Chicago, and hopefully more and more pop up. So so yeah, I I mean I would love to have gotten robotic surgery if I could. Nothing against Dr. Boyd because he's awesome. He's done over 300 of these surgeries now, but just robotic has a shorter recovery time. So I tell people it's a good idea. So that's kind of my story. And since then, you know, I do have some symptoms left over, but it's nothing like before. And yeah, so mostly I had endothelial dysfunction, and which is where the lining of your artery basically has been squashed so many every heartbeat your whole life that it just gets damaged and then it collapses once in a while, and that causes vasospasms, you know. So I would say those have gone from about, you know, they were bad before surgery. I'd be teaching a CLAC, a college class, and you know, and I'd feel it coming on, and I was like, it's like a showstopper. I was like, oh God, here we go. Yep. And I'd have to say, I'd just say, okay, can you guys just uh open the book and took that page real quick? And I just figure out a way to get off stage for a second so I can just, you know, get through that. But now it's I would say the spasms are 20, 25 percent of what they were before. So yeah.

SPEAKER_02 11:00

You mentioned 49 years old, and one of the things I see on the people who are participating on the page, on the Facebook page, is the range of ages is young teenagers, all the way up to I think the oldest person I saw in there was 71 or 72 years old. Just my contention that the longer it goes on, the more likely at some point it is to impact you. And you know, yours was at 30 some years old when you first had that, you know, the the condition get to a point where it was untenable. I was sixty-five. I mean, I was good until I wasn't. You know, zoom, zoom, zoom all the way and then you're not. And then it went from it escalated so fast they were concerned I was gonna go into ventricular fibrillation every time I had a spasm because it would throw me into VTEC. But it started out like you were saying, just that little bit of pain. And as I see some of the responses people get on the Facebook page, I just want to scream because yes, get it done sooner than later.

SPEAKER_01 12:05

That's yeah, I have the same thought. Yeah, people say, Well, I just put it off. What you just said is is completely true. That it, you know, it almost has to get worse because you're continuing to squash an artery that's not supposed to be squashed every heartbeat for another decade and another decade. And what happens, and a lot of doctors cardio don't know this, that what happens is when you do that, A, you're caught you're damaging the lining of that artery so that it doesn't respond, doesn't produce and respond to nitric oxide correctly, which is the thing that makes it expand when you need it to expand. And instead of expanding under stress, it collapses under stress. I mean, that's the opposite of what you want, right? So that's gonna get only worse over time. Plus, Stanford says that almost every single person who has a myocardial bridge and is like 30 or 40 or older has plaque, you know, right before it. So you're just gonna accumulate more plaque now as you go through time. So by getting it fixed, you stop the plaque formation, you know, kind of halt it. Maybe you can even reverse it a little bit with some some medication or something. But then the endothelial dysfunction, and that's that's a great point, is that that endothelial dysfunction, it cannot start to heal until you stop squashing the artery of your heartbreak. You know what I mean? So it can't even the idea that somehow it will just go away or something by itself is forget it. It's only going to go get worse over time. You have to stop stepping on the garden hose to allow the garden hose to patch itself up again. If you keep stomping on it, it's gonna get worse, you know. So, but a lot of doctors don't connect those dots. Yeah, and they don't and just an interesting point because I was thinking before we got on, I was thinking we see people come in all the time, and you're mentioning the things you see on the on the as people come in on the site, right? The reports you see. And one of them, the one that I see a lot is my doctor diagnosed me with a myocardial bridge, but he said it's it may not be the bridge because it might be this endothelial dysfunction or these spasms, as if they were separate, you know what I mean? It's like, no, no, the myocardial bridge is the cause of the endothelial dysfunction and the spasm. So, and you know, a lot of doctors just don't don't see, don't connect the dots, you know. So, so yeah, and and without getting the bridge fixed, the spasms and the endothelial dysfunction are just gonna you know.

SPEAKER_02 14:15

I love the analogy of the garden hose. If you keep squishing the garden hose, eventually, you know, it can't feed the water out to where you want it to go, or when you do, it slows it and then you know surges it. And yeah, if you keep doing that, the garden hose weakens, and then it doesn't open up as fast, and then it's not returning to its normal size, which is one of the conversations we see frequently on the Facebook page, which causes then an even more severe ischemic incident as a result of lack of blood flow. And that's uh certainly some sort of a sensation of pain as that continues.

SPEAKER_01 14:53

Yeah, those vasospasms where it collapses, your artery basically just, you know, supposed to be expanding and collapses, and then the artery itself doesn't get enough blood going through it, and it starts to the vasospasm starts to vibrate like this, you know, like it's actually spasming the artery itself, which just makes it clenching even more. And that's when people have kind of a mini heart attack or event, you know, whatever you want to call it, and they have the pain and the kind of comes and goes. So you have the with the myocardial red, you have the first component is just the fact that you're losing blood flow in general because your artery is in a state of being squashed most of the time. But then the second thing is when the spasms do occur, which can be really a lot for some people and less for others, then you're getting this extra bit, like really an attack, an acute attack, you know, like at some times.

SPEAKER_02 15:40

And so yeah. And that's why I think the younger the better, because that was kind of my situation too. That it it hit and it just accelerated so quickly. It was a window of four months to where literally nothing to everything. And yeah, it didn't wasn't much of a decision for me to think about what I needed to get done. Yeah, let's at least try this because it's the only solution that seems to make sense at this point.

SPEAKER_01 16:03

And we do have kids, like you said, people on our site who are we did a poll, I think, a month ago or so. And you know, what age were you diagnosed? And like a lot of people get on the site, they said, Wow, you know, am I abnormal? I was diagnosed when I'm 40 or 45. So, no, that's the norm. Like most people responded that they were diagnosed, you know, in their 40s, something like that. And fewer, fewer younger, and then also a lot 50s and 60s, too. So it's actually the norm because it's not something anybody looks for when you're young. When you go to the doctor, no one's looking at your heart on a CT scan. And some people even, even if they had gone to the emergency rooms when they were 30 or 20 or something, in some cases it gets reported on their report and the doctor doesn't even tell them, yeah, doesn't even mention it. It's just like, yeah, everything was normal, you know. So yeah.

SPEAKER_02 16:48

So it's you know, the other later in life thing that I'm seeing, and this again just conjecture on my part. But I wonder how many people dropped dead of a cardiac arrest, and in fact, it was an occluded widowmaker, L A D going into the heart that was actual the cause of it. But they don't, you know, they they died. It looks like it was an occlusion, they had this heart attack, and it's unfortunate. But in fact, if they had gone through the autopsy process, which you know, unless there's a reason to do that, you don't, they would have discovered, oh my gosh, that actually was a bridge. He was 72 years old, and it just finally got to a point where no more.

SPEAKER_01 17:32

Totally. And so maybe three, four, there was Bobby Ryan, R-H-I-N-E, MLS professional major league soccer player of the United States, died. Heart attack. Only thing they found, my cardio bridge. So they they actually attributed it to the Mario Cardio Bridge, I think, in the autopsy. And then Stanford, Dr. Schnitker, the who's the if people aren't aware, is the lead, the kind of team leader of Stanford's MyroCardio Bridge team. And and also people should, you know, like most places don't have a MyroCardio Bridge team. Right. There's only like two or three that I can think of, you know, in the on Earth. You know. So and so she, I think one of the reasons she got into the field in general is that she noticed a study from Brazil where a professor who was 43 died on a treadmill in a gym, and there was nothing explaining why. It just Mario Cardio Bridge. And then she's kind of scratched her head, like, oh wow, how could that you know be happening? So we have in our frequently asked uh questions document, our FDQ document, which is used to be like two pages and now it's like 50. So at the end, we have lots and lots of studies listed in sources and everything else. But I think there's a two pages maybe of reports and studies of people who died, and it seems to be linked to Mario Cardio Bridge. For even from the news, was it Christian St. John, Chris St. John's soap opera actor who was a combination of Mario Cardio Bridge and and other things? And Harry Morton, I think, what it's some millionaire guy, he's died, and Mario Cardio Bridge was found. But then also more like scientific reports too. So it's just like it pops up all the time.

SPEAKER_02 19:04

So we go through the process. You have your surgery, things are better. How about medications? Any changes in your life dramatic that you had to make that post-surgery were impactful?

SPEAKER_01 19:18

Yeah, so I had never been diagnosed with a heart issue before this. And so I would never on any heart medications. No one even suggested it, you know, before that. And then when I went to Stanford for the testing, you have to, you know, to follow the protocols, they have to like try medication, you know. So they, you know, everybody knows it is not going to fix your myocardial brain. You know, it's not that the medication is not going to go in there and pull a piece of muscle off of an artery. But they have to do it because it's just a step. So they gave me Bistolic, which has some other name like Nevbiol or something like that. It was a living hell for maybe three or four days. I tried it. That's just my experience, you know, meaning that my whole life seemed to come to a grinding halt. I felt ultra tired. I already have kind of low blood pressure and low heart rate already. So that's me. You know, she said sometimes when people, Dr. Snicker, when people take these meds, they sometimes feel like they get hit by a bus. So that's kind of how I felt. So it didn't work. And I was just like, that was it. Four days. That's all I needed to see. And yet other people take meds beforehand and they take meds after, and they really help them a lot, you know. So I also didn't really feel that good. I tried the nitro, I should say, too, the nitroglycerin, you know, to open your arteries right after surgery. But that just kind of made me kind of my head got a head rush. I just didn't feel like I needed it. I didn't want to add anything that I didn't need, you know. So so yeah, but but I just having said that, a lot of people really their symptoms have been at least reduced, at least mitigated by these medications. So agreed.

SPEAKER_02 20:48

And I understand in some cases that's the only option they have because of the structure of their bridge or the way that the maybe multiple bridges in their heart. So, you know, at least there are options to help alleviate some of those symptoms. And I recall in my case, you know, like you were describing, you'd have that sensation of, oh gosh, here comes a spasm. I know what it's gonna feel like, it's gonna hurt like hell. I'll get through it, and then it stops. Before I actually finally decided to act on this whole thing, I was eating nitro like MMs. I mean, I had five, six, seven episodes during the day. But the nitro didn't work, you know. They just said, here, take this when it happens, I would take it.

SPEAKER_01 21:25

And it'd be like it could make it worse. It could make spasms worse, they say, you know. Yeah, it didn't.

SPEAKER_02 21:29

It certainly didn't make it any better. Uh you know, oh wow. That that but they just kept telling you to take taking them like more nitro to to manage until we get to you and figure out what the heck is going on.

SPEAKER_01 21:40

So Yeah, it's a good point that people have really diverse experiences. Because I I'm no expert in the meds because I didn't take many, but I do know from the stuff on the site that we have but we have like 1,750 people on the site right now, so it's a lot of people's experiences coming up.

SPEAKER_02 21:53

And that's that's worldwide, which is so neat to see and communicate with people from Pakistan or Ireland or Spain or you know wherever it may be.

SPEAKER_01 22:02

Pakistan, Ireland. We have it's biz and just a side note on this, it's it's bizarre because there's people in Pakistan who've had surgery because their doctor just got it. And there's people in like very like wealthy modern countries, Australia, Ireland, who can't get surgery because no one will no everyone's like, no, I don't think it's something I want to do. And so it's it's just bizarre how nobody reads these studies. Like these you'd think someone comes in with the Maroc Audio Bridge, a problem, let me go home and read do my homework on it. Because I'm a teacher, you know. So if somebody asks me a question in class, I don't know the answer, I get that feeling like, okay, I probably should read about this so I have something to say next time. Doctors sometimes don't do that, they don't read even the Wikipedia page, it's out there. So it's yeah, it's just bizarre.

SPEAKER_02 22:50

So yeah, but you know, what got you from surgery, post-surgery, healed to the Facebook page?

SPEAKER_01 22:59

Well, what happened was when I first contacted Stanford, I was in, I was still in China. It took me a while to get the surgery because, like I said, I came home end of April 2018, and then I, you know, was kind of up in Massachusetts, floundering, trying to get insurance midway through the year, you know, because the system you're supposed to get it in the beginning of the year. I had to prove that I came home from overseas to get mid-year insurance. It took me until June to get the insurance, and then I tried to get the robotic in Philly, robotic in New York, it didn't work. Finally, I went to Stanford and they were always on vacation in the summer. So it wasn't until December that I had surgery. So it was a good six months, seven months there. But right at the beginning, when I was in China and talked to Dr. Boyd, the nurse who is rock star, Donna, Donna Miranda at Stanford, nurse slash teacher, because she teaches nursing at a local college there in California. She said, Rob, just wouldn't let you know there's a Facebook site that a lot of people who come through here are on. Maybe it'll help you out. I was like, there is, you know, so and and I had just come out of a communist hospital in China who was being told this is not a big deal. And so to have a Facebook site where people actually know things, and then people like Perry the Greece and Terry Tracy Crozier were on Stephanie Devereaux, were all like helping, you know, answer my questions. And so it was me. It was me that I was the one answer asking the questions for a long time. And I think what happened was just that through surgery and everything, and it just got to a point where I guess I started to know the answers to questions after a while. I mean, because I had just been asking those questions. And every time I would, I'm also a journalist too. So like every time I would go to like a new doctor or Stanford's, I would always ask, tester them with like dozens of questions. You know, I'm sure Dr. Sinder was like, get this guy out of here. He keeps asking me these questions. But she explained to me how it's could not only congenital, but it's formed, you know, they think when your heart sometimes the muscle folds up when you're in the fetus, your heart forms like this two pieces, two flaps, and then the arteries like get stuck in there. It's supposed to be out here, but it's it gets stuck between the flaps. Yeah, something they they're studying how it forms, you know. And it and it is congenital. People should know that it's something you're born with, you know.

SPEAKER_02 24:57

So your children aren't gonna get it because you have it.

SPEAKER_01 25:00

Yeah. So I just asked all these questions, and then about a year during COVID, when I was already in Panama teaching somewhere else, we everyone was stuck inside during COVID. And what happened was I watched a video that somebody put up, it's still up there because go see it. Made a five-minute video about myocardial bridges, trying to just show off his expertise. And it was completely backwards. It was everything he was he repeated a lot of the myths, especially the myth that myocardial bridges don't really cause severe symptoms because they can't, they only squash for 15% of the heartbeat cycle. In other words, they squash the artery for like this for 15% of the cycle, and then they open up the artery again for the other 85%. But that but the the myth there that Stanford has gone on BBC radio to debunk this myth, and yet doctors repeat this myth around the world, is that no, the artery, once it's squashed by a maricardial bridge, yeah, that's 15% of the heartbeat cycle, the systole. But then the relaxed phase, once it's released by the muscle band that's sitting on top of the artery, the artery is like ply up, it's sturdy. It's like a garden hose. You know, a garden hose like stiff and sturdy. And when you step on a garden hose, it doesn't go boop, right? It just very slowly starts to open again. You know, you can sit there and watch it and watch it slowly open. It's like that. And so your artery basically stays mostly closed for most of the time. And so that's what a lot of doctors don't understand. And this guy put that in the video, and I said, no, no, no. And I thought, where is he getting this from? Where could he possibly why do doctors keep saying this? And I looked on Wikipedia, and sure enough, it said it right there on Wikipedia. And so I erased the entire Wikipedia page and started over again. And well, you know, and then had stand for it. Yeah, yeah, yeah.

SPEAKER_02 26:42

Thank you for your journalistic curiosity. I think we all appreciate that. And secondly, now I understand where some of the verbiage is coming from. Yeah, it's it's so well written and so well done. So continue on the Wikipedia page.

SPEAKER_01 26:58

At that point, that was a year, that was that was like February of 2020 during COVID. So I I had been kind of on the case now for almost two years, you know, a year and a half to two years of trying to research this stuff. So so I knew quite a bit at that point. And what I didn't know, I I wrote the whole thing and everything and had all these you know studies and references at the bottom. But then I sent it off to Dr. Schnicker and Donna at Stanford. I said, I just want to let you know I wrote this Wikipedia page because it was dispensing false information, and I got a lot of stuff on here from you and from other doctors, et cetera. Would you mind checking it? You know, just to tell me where I'm just hit me, tell me where I'm wrong. And they made, you know, four paces, they made corrections, and they said otherwise it's great, it's great. So we're glad that it's out there getting the word out. So so now that's there, and things just started to change. All of us I noticed like little by little, like people start, doctors start to be like, okay, maybe you should have surgery. And so it's just a piece of the larger puzzle, you know, it but it's it's it was a nudge in the right direction. But it's just amazing how something like that can happen. Somebody writes a Wikipedia page with policy information, and doctors around the world are looking at that, you know, and diagnosing people based on Dr. Wikipedia, you know, basically. So it's important. Yeah, it's strange.

SPEAKER_02 28:10

So so that came concurrent with the Facebook page introduction. And now you're one of, I believe you said six administrators on that Facebook page.

SPEAKER_01 28:19

Six administrators. And the funny part is that the guy who started the pages, he just he's been on there so long, he didn't, he's he's no longer administrates. He was kind of been there, done that. Yeah, which is which is great. I didn't start the site, I want to be clear, I didn't start it.

SPEAKER_02 28:31

But yeah, I just kind of got on it and thank God he started it because otherwise, you know, as you now look at how many years, what, three, four, almost six years into from surgery to actually being really, really involved, because I know that is not an easy process to be an administrator on that page, and I can see how often you comment. I mean, I try every day just to go in and see what's happening, and if there's somebody I can offer something to, I do. But it's quite a process. As you've been in it now for some time, what what would you say you've seen over the period of this uh last five or six years in terms of not only the responses and uh questions of the people who are actively engaged on the page, but uh even more so, are there any really crazy stories that you've seen or uh situations that have come up that we should share here?

SPEAKER_01 29:25

Yeah, a lot of crazy stories. But just just on a at a j first, I just quickly at a general level, I've seen that we like when I got on there were 200 and some people, now there's 1700. So there's been a rapid amplification, you know, of of the message thanks to the you know, the people on the site who go out. Like people go to Chicago and then they tell Chicago doctors, you know, University of Chicago is a big standard for myocardial purchase, and they get the message, then those guys are on our site now. You know, a lot of the surgeons are now on our site, so they're getting stuff back. There's more communication, better, better communication. And so it's easier when people come in and say, My doctor said this, my doctor said that, I can't get surgery. It's easier. We have more ammo now. You know, we have videos on YouTube, we have the frequently asked questions, we have people can easily get past the roadblocks in terms of answering those questions and helping the people out, and so they can move around and maneuver quicker now, I think. But yeah, some of the stories. So we have stories of people who were forced to get surgery in countries like Belgium, where there was a cyclist who didn't even have symptoms. He went in and they found this huge bridge, it was like seven centimeters, something like that. And the doctors told them we're not gonna sign off on your racing permission slip because he's a you know competitive cycler until you get this surgery because this is too big, it's huge, you know. And meanwhile, we have somebody, you know, like in Australia and Ireland who are in these very advanced countries, and the doctors will just won't even talk about surgery. You know, and it's like that's weird. So, you know, people that want to get surgery can't get it. People that weren't even looking for it are forced to get it. It's just random. We have we have a guy, this is one of the wildest stories ever, Braeby, just recently who is from Europe. He and his partner are from Europe, and they got diagnosed in Europe. I think it was Sweden, I want to say Sweden, England, and Portugal. They they went all over Europe for like six months, already had the diagnosis, got a huge huge microcredit, but I think it was five centimeters long, really deep. Yeah, and they they knew that the doctors are looking right at it. Anybody who knows anything about bridges' surgery time, no one would do it. And so it's a long story, but we have a guy in Pakistan who's a really smart guy right here right here, who's had surgery himself with a doctor in Pakistan. And the partner of this guy, the lady, she had did study abroad in Pakistan or something before, a long time ago. So she knew something about Pakistan. They went to Pakistan to have surgery because three countries in Europe would not do it. And they had the surgery for I think roughly the equivalent of 3,500 euros, which is about $3,500, which is like mind-blowingly low price. Right. So that's another statement. Yeah. The idea that someone in the EU would have to go to the other side of the world to Pakistan for surgery, where the EU is the European Union is supposed to be about raising standard of living and all that is bizarre. So that's crazy. Another craziest other crazy stories come from people, these are some really sad stories, too, from people who you never do a stent with the myocardial bridge. That's one thing just period, uh, you know, full stop. You never do a stent. We have several people who had doctors who just had no idea what they were doing and put stents inside their bridges because you can't remove a stent, it gets melded into the wall of the artery. So one of those guys has been in bed for like 10 years, you know, is bad news. He has a kinked artery at the stent because it caused the twisting. He just needs a whole new situation. I'm not sure what he's gonna do. We have a guy who I want to say has 10 or 12 stents put in. We're talking about like severe malpractice type of a thing, like possible needing heart transplant type of a thing, including inside the bridge. So, and we also have other stories where people had multiple bridges, like you could have the typical place to have is the left anterior descending artery, correct? But they can cause problems on other arteries too. And some people have two, three, four, or five bridges. Yes, you know. So I think it's a myth too that that the other ones don't cause any problems, you know. Like that artery's there for a reason, right? Right? Like you need the other arteries too. So you definitely don't want to let your doctor some people have been the doctors have told them, well, we're just gonna unroof this one, the the LAD one, because that's the one we know. No, no, you can roof all of them. You know, like you're in there. If you're already in, let's do it all. Yeah, yeah. So that's that's kind of a strange situation when people are told that to just do one and not the other. And we just have people that have gone through 10, literally 10, 12 cardiologists over the years, just bouncing from one misdiagnosis to the next and kind of kept in a state of like just mystification. Like they're not told they don't they're given medication, but they're not told that that's not gonna really solve anything, and they just keep getting pushed down, kicked down the can down the road. We have people who people who had a bypass, and a bypass is okay as an extra, you know. Like if you if you do the the unroofing surgery, which is the you know, first line surgery, you can do a bypass too to have another line of you know circulation, just to best of both worlds, but you don't want to do just a bypass because then you still have the same bridge that you started with. You didn't fix the artery, and the bypass can fail. And if it fails, you're stuck with the bridge, which is now the bridged artery, which is now worse than it was before because time has gone by.

SPEAKER_02 34:37

Correct.

SPEAKER_01 34:37

Yeah, that happened to a guy on our site, and he had to have a he's so he had to he had it happen to him, it failed, and then he came to Stanford five years later, was really doing bad. Thought, thought he might not live, you know, past another couple of years, and he had to have a second open heart surgery so to have the unroofing. And now he's now he's good. Now he's working, he's out, he's he's he still has some symptoms left over, but but like he's much better than he was before.

SPEAKER_02 35:03

I I think that's the the important information we can get out for all of us, everybody that's got this symptom, to be aware that there are so many stories, we're all unique, everyone is a little bit different, no two are exactly alike, and the process is the similarity. The process to cure this to the degree that it can be cured, or at least minimize the symptoms is something that uh can work for so many of us if we can get to the the right uh either cardiologist or surgeon or care team to uh agree and identify. That's the uh the big applause that comes for everybody that's involved in the uh myocardial bridge support group Facebook page is it's such a service to so many people. There's only eight only, there's eighteen hundred people on there, you know, globally, but of those eighteen hundred, what what the fan must look like as it it goes out from there and people say, hey no, it's it is real, my symptoms are real, the uh debilitating effect of this is real. It's I was surprised and when you were getting your diagnosis in China, they didn't add, oh, you're just stressed. You know, if you talk you'll be better, yeah. As as so many people get, you know, they they start, yeah.

SPEAKER_01 36:21

They start. Well, I'm gonna say that that's the number one junk diagnosis is anxiety, is right. Because it it is a chicken and egg because there is you do have anxiety when usually when you have a myocardial bridge, because what's happening is you're having squashed artery, less flow, less to your heart of oxygen, plus the spasms, you make it even worse, and you get this emergency signal to your brain, like, hey, not enough oxygen. And so, but it's the symptom, it's not the it's not the it's not the the ailment, it's the symptom of it, you know. So it's an easy diagnosis, it's the easiest one of all because you don't have to have a scan to or a blood test to show anxiety, you just say anxiety, and then you just let the pre person go.

SPEAKER_02 37:00

And what what creates more anxiety than anything? You think you're having a heart attack? It's like yeah, and not knowing why, yeah. Right exactly.

SPEAKER_01 37:07

Totally. Right.

SPEAKER_02 37:08

Of course I'm anxious, of course I'm stressed. You know what why wouldn't I be? Exactly. What what's next for Rob? You're uh a writer, a teacher, you're in Panama now at this point in time. What do you see happening next in your life?

SPEAKER_01 37:21

Well, a couple of things. On the general front, I'm not sure how much longer I'll be in Panama. I've been here, you know, three and a half years so far, and I may just move on to another country or back to the U.S. Probably keep teaching at least for a while. I taught college before, but without a PhD. I was taught for six years with a master's, so always kind of have that PhD thing in the background. And the funny part is like, even when I went for a master's, I was like, I know there's something wrong. This is before I got diagnosed. I said, I know there's something wrong with me. I was like, you know, really tired when I was studying, you know, and everything. I said, should I just put this off until I get this, whatever this is, until I identify it and get it fixed, you know? And I think a lot of people are like that, right? Probably on our so they just they know something's off and their life's just not hitting on all cylinders. Right. It's so tired all the time, but you still have to live life. You still, you know what I mean? It's like you have to make that choice, like, okay, how much can I do? So it's a weird thing. But I guess now that I've passed it, past at least the surgery part, the PhD looks a little easier now. So that might be something to finish, finally finish that. In terms of more immediate stuff, and I still want to get married and have kids and all that, you know. I'm sort of sort of put that off too, is another thing because I knew something was up. I knew I, you know, I was just having these medical issues. I knew I had to get a little bit more.

SPEAKER_02 38:31

Well, this is a great plug because you're gonna be on the podcast now. We can see you on the Facebook page. This may be the best dating service ever.

SPEAKER_01 38:38

Yeah, yeah, yeah. It's got to be better than Tinder, right? And I actually, on a practical standpoint, I've been mentioning to a few people. I didn't want to post anything just yet on the site, but I'm doing this thing that some other people, I think four people on our site have done it. It's called EECP. It's this counterpulsation thing. If you lift it up and it's non-invasive treatment, yeah. And I've only you do 35 hours, you do each day, you do an hour of treatment Monday through Friday, 35 hours. And the guy I found the guy I'm doing it with in Panama actually is the guy who brought it to Panama for the first time. And it's they say you usually notice results, or you know, some starting to notice something after 10. I've done 11. I'm definitely noticing things. It's it basically like pushes all this blood up into your upper body for an hour, and then that stimulates the arteries to A, produce more whatever the receptors are for nitric oxide, so the endothelius functioning gets better, but also it stimulates the creation of new collateral arteries, like extra arteries, the branches, and that continues for months after, or maybe longer than that, after you finish the last treatment. So I've already noticed, I'm just hoping it keeps going. It's already improved just in the 10 that I've done. I'm hoping it continues. You know, if it does, I'm it's good. So good.

SPEAKER_02 39:51

I think we're all going to be anxious to see what it that outcome is as well.

SPEAKER_01 39:55

And I learned that's something I learned from the site. Yeah.

SPEAKER_02 39:58

Yeah. If there was one thing that you would say was most dramatic or impactful in your life post-surgery, what would it be?

SPEAKER_01 40:06

Post surgery. The site.

SPEAKER_02 40:10

The Facebook site. Maybe the ability to help people with the site or the site itself was most just the whole experience.

SPEAKER_01 40:16

I don't even look at it as like, yeah, yeah, exactly. Like just I'm on there like every day, like it's almost like a non-effort. Like I, you know, I just get on there and I see people have questions and I know and I know the answers to their questions, you know what I mean? And I can see what but each person's unique, they have a new little situation. So if you have somebody out there who really needs help and you know that you can help them, it's a it's just a great, you know what I mean? You can just jump right in and and help them. They're they're mystified by what their doctor told them. And then you look at it, you're like, Yep, I'd be mystified too. That happened to me. But let me just tell you this, this, and this, and they go, Oh, okay. And then they just see what's happening, and then it's just like now they get it, and then they go that little nudge takes them to the right path.

SPEAKER_02 40:56

Then you see 17 other people chime in, and it's like, all right, I'm not alone on this thing. Yeah, for sure. Well, before we leave, I do want to have you identify the the Instagram handle and maybe just give us a litany of the options that are out there. There's a YouTube channel, the Instagram, as well as the Facebook page. Could you just go through each of the addresses for those?

SPEAKER_01 41:16

Yeah, so we have the the Twitter is MB, like myocardial bridge, mb research info. All one word, mb research info, that's one string, and then just you'll you'll find that. And then the YouTube has like a crazy handle, but it's if you just Google Myocardial Bridge, a lot of different stuff will come up. But if you Google my we have four big videos about myths, myth number one, myth number two, myth number three, and four. So if you Google like myocardial bridge in I mean not Google, look in YouTube or myocardial bridge, and then like myth number one, or number two, number three, number four, it should those should come up. And those were like things that come up so often when people go to doctors and they're used to prevent people from getting surgery. That's the effect of them. So if you can kind of get past those myths, then people can see, oh okay, maybe this doctor doesn't always, it's the opposite of that, actually, you know. So and that helps to kind of break out of that. We call it the spin cycle, you know, when you get stuck with a doctor who really doesn't understand it and refuses to learn. You know, because we've had people print out whole studies, print out the FAQ, print out the Wikipedia page, hand it to the doctor, and the doctor literally refuses to look at the paper, you know, like will not learn. So that's unfortunate. And then we have other doctors, like obviously Stanford's always learning. Dr. Guy in Georgia is always learning, you know, these different doctors who are the kind of doctor you really want, you know, who's a lifelong learner and always knows that there's more than they could know, you know. So so that's that's great too.

SPEAKER_02 42:47

Yeah. So I think we've even got to do it.

SPEAKER_01 42:49

Those are two big the YouTube and the Twitter.

SPEAKER_02 42:50

We we've now got a female surgeon.

SPEAKER_01 42:52

There was one in Texas, in Galveston, Texas. Is that the one? There was she was a female surgeon there. In the FFAQ document, we have, I don't know, 20, 20 something surgeons who are listed all in the US and are in different parts of the world who have done the surgery, who are not like you think they might, but they actually we know that they've done it.

SPEAKER_02 43:10

So would you be okay if we took the frequently asked questions and the list of doctors and just put them up on the website?

SPEAKER_01 43:17

Oh, no problem. It's always growing. You know, the doctor list is always growing. U.S. we've got 20 something states. And the other thing is too, is there's other doctors out there who have done it, we just don't know them yet. And so, you know what I mean? So that's it's like fishing, you know, they're out there somewhere. And and we should say, too, like, here's just a quick myth that we should maybe, you know, to get out there too. There's this myth that like Stanford is the only one doing this, you know, like right. So like doctors will tell patients, well, that's just Stanford, they're just making a lot of money off of this thing. Uh they're not aware that like a lot of the studies that we're using are actually from China. You know what I mean? Like, I don't even have a Chinese doctor because that's another world over there. You know, they've got plenty of doctors doing unroofing in China. So we have China in Spain actually was one of the pioneers in the TFFR testing that they, you know. So it's Stanford actually really made a concerted effort to make a team for this about a little over a decade ago. People have been doing unroofing surgery since like the 1970s, you know, like long 50 years. It's nothing that's not new. You know, it's just the focus on it and the focus on, I guess, recognizing that your bridge doesn't have to be nine centimeters to be, it could be smaller and still cause you a lot of issues.

SPEAKER_02 44:36

That's I think a bigger advancement, that recognition. Yeah. Well, and again, the purpose of what we're trying to do here is just support people to say you're not alone. This is a real condition. What you feel and what you think is real. And if we can give them that one more step to a doctor that may be closer to their community versus having to come all the way across the country or the world, I mean, you might have been the biggest tourism factor going to Pakistan right now with the pricing on and my old cardio bridge unroofing. But it's it's just that ability to help and bring the awareness.

SPEAKER_01 45:10

Yeah.

SPEAKER_02 45:10

And for all the pieces and things that you do. So, Rob, I can't thank you enough for all the participation for all of us on the Facebook page that you share with the information and the knowledge that you've got. I'm I mean, I just applaud you. I have the utmost respect for you. And again, thank you for all you do to help all of us on the other side with myocardial bridges.

SPEAKER_01 45:33

Thank you for having me on the show. And like I said, I was on the other side not that long ago asking those questions. And so many people I'd like to thank from the site, you know, who were on that first 200 or so who pioneered it. Without them, it would there'd be no site. So and also I'd like to thank the doctors are the ones doing the research, you know, Stanford's out there. And so we should thank them too for doing this stuff. And they get it, they understand they're helping people and that people need this stuff. So we should give a shout out to them as well. So there's a lot of people working together and to agree to help people.

SPEAKER_02 46:07

Agreed. But it does, it does take a it does take a very, very, very large village in our case to make this all happen. Yeah. Well, again, thank you. I will look forward to continuing to see your responses and input on the Facebook page. Yeah, appreciate it. Just a reminder: if you would like to get the frequently asked questions list and the list of doctors who are performing the unroofing surgery, visit myimperfectheart.com and click on resources. You'll find everything there. Thank you for listening to Imperfect Heart. It's my hope that this information helped in some way to improve your situation or will help you better understand this condition. More importantly, that it gives you hope through stories that there is help and you most certainly are not alone. If you've been diagnosed with a myocardial bridge, please be sure to join the private Facebook group, Myocardial Bridge Support Group. For more information about our program or to reach me directly, visit the website myimperfectheart.com. If you like what you heard today, please give a positive review, thumbs up, high five, whatever your app likes. And be sure to share with everyone important to you so they understand what it is you're dealing with. Please subscribe as well. Welcome each day with gratitude and positivity. Imperfect Heart is a production of Hear Me Now Studio.