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Scot: Troy, have you ever been in a situation where you had to advocate for your health? Like, something wasn't right, it felt like you weren't getting the correct diagnosis, people maybe weren't taking you seriously, something like that?

Troy: Oh, absolutely, Scot. Yeah, I had one time where I was just having high fevers and just felt miserable, and it just was not getting better. I went to a doctor and I felt like he just kind of blew me off. And I wasn't in healthcare at the time. I was in medical school, but I really didn't know anything. I was in my first year, and I really had to kind of push things a bit and go see someone else, and was ultimately diagnosed with a salmonella infection. It was kind of crazy.

Scot: Wow. Man.

Mitch: Whoa.

Troy: Yeah. It was bad. So I had to get IV antibiotics and get treated. So yeah, I think we all face those situations occasionally, but I definitely have.

Scot: Yeah. How about you, Mitch?

Mitch: Oh, for sure. And I've shared a couple on this show. I'll go to the doctor and it's everything from, "Hey, I'm tired all the time," and they're like, "I think you're depressed." I'm like, "Ugh, I'm doing all I need to with my mental health, I'm sure. I don't think it's depression."

And it took a lot of pushing and getting a second opinion to find out that the tiredness was linked to testosterone rather than, say, seasonal depression or activity levels, etc. It was an actual hormone difference.

Scot: Yeah. Sometimes we just know there's something wrong, but we can't seem to get the help we need. And it can be really frustrating and just easy to give up and just accept whatever is bothering us as the way things are.

This isn't about bashing on doctors or anything like that. It's just about advocating for your health. And today we've got a story from a guy who knew something was wrong, did some research, stood up for himself, and eventually was able to get a diagnosis that made a huge difference in his quality of life.

Today, on "Who Cares About Men's Health," it's dudes talking to other dudes about their health. We're going to bring in guys in our lives to talk about health,, whether that's friends, colleagues, neighbors, whatever. And the goal? Prove that just talking about health with other men can maybe, just maybe, give us some insight on how to improve our own lives. So that's today's show.

This is "Who Cares About Men's Health," with information, inspiration, and a different interpretation of men's health. I'm Scot Singpiel. I bring the BS. The MD to my BS, Dr. Troy Madsen.

Troy: Hey, Scot. Good to be here.

Scot: Mitch Sears, a guy that's just working on his health, and he always brings a unique perspective to the show. Welcome, Mitch.

Mitch: Hey. Happy to be here.

Scot: And our guest, Jonathan, Mitch's longtime friend and companion, who had to work really hard to get his doctors to listen and take his concerns seriously, which really highlights the importance of self-advocacy when it comes to your health. Jonathan, welcome to the show.

Jonathan: Hey, guys. Good to be here.

Scot: First, tell us a little bit about yourself.

Jonathan: So I'm 36. I have been working with sort of chronic pain issues since my teenage years, and I have tried to figure out what the deal was. I was always told they were growing pains, it's not a big deal, and men don't cry. So what's the big deal? Why would you pursue it? But it got worse, and that's when I started to reach out to medical help.

Scot: And tell us about this pain. What was it like?

Jonathan: Yeah, so when I was a teenager, I had this weird pain in my heel, and it was pretty obscure. Everyone said, "Oh, you're growing. Your tendons are stretching out. They're growing pains. Don't worry about it." And that's fine. But then after a few years of this, I started to really struggle with lower back pain, hip pain. And you look into it and people say, "Is it a shooting pain? Is it a stabbing pain?" I didn't know. It just hurt.

It was bad enough that occasionally I would have to take time off of work and I wouldn't be able to bear any weight on my lower back and hips. I would walk across the wall with your hands. And some days, I really was crawling from one room to the other.

Mitch: Literally?

Jonathan: Literally. Like fox crawl across the floor. Yeah.

Troy: This is in your 20s?

Jonathan: In my 20s, early 20s.

Troy: Wow. Yeah.

Scot: That doesn't sound normal, Troy. Is that normal, Troy?

Troy: The doctor is going to say no, that's not. Yeah, that's really concerning to have pain that severe that you really can't even walk.

Scot: So you bring this pain up, up through your 20s, and when you do, it's kind of dismissed, it sounds like. Would you say that's accurate?

Jonathan: Yeah, it really was. My sort of family history, people were complaining about back pain. I had a grandfather that said, "Oh, it was the Jeeps in World War II," whatever it was. And so it was a subject of some concern, but ultimately, it was pretty strange as to how to deal with it or what to call it.

Scot: So then after being discouraged so many times talking about it or trying to seek out help, what finally then made you decide, "You know what? This isn't right. I have to do something. I have to find somebody that can help me"?

Jonathan: So I was really happy that I was lucky enough to get an apartment downtown. It was really close to TRAX, the light rail here in Salt Lake City. I was late for a train one morning, and I remember being unable . . . I had a little bit of a flare-up that day and I was unable to run. And it was more of an embarrassing, spirited hobbling that I was doing down the street to catch the train. And I missed the train.

I missed the train, I was late for work, and I kept my job and it was okay, but I was in my mid 20s at this point, and I figured, "This is dumb. This is really dumb that I'm not able to run or to have . . ." Even if I wanted to be more active in my lifestyle, I had a real barrier to that.

Mitch: So just going back, when you say you had a family history of it, did that even make you doubt yourself? I mean, you weren't doing Jeeps in World War II, right? When you talk to family members and stuff, did it make it seem like it was just something everyone had?

Jonathan: Well, totally. And it kind of coincides . . . So the first time I went to the doctor with really this being the complaint, the doctor sort of looked me over and, "Nah." He turns me around and he pokes my buttock a little bit. He's looking for the sciatic nerve, and he hits it and it hurts. And he goes, "Ah, sciatica. What can you do?" And I want to say, "Well, that's what I'm here for, dude. What do I do?" I don't know. But he said, "Look, it's ibuprofen, physical therapy, and off you go."

So one thing about physical therapy is that it's not always covered with insurance. And in my case, it was about $100 a pop and he wanted me to do it two to three times a month. So it was a considerable out-of-pocket expense. I was a little hesitant to start it, and ultimately felt a little dismissed.

Yeah, to Mitch's point, maybe that's all it is. Maybe it's just some genetic thing. I don't know. It's just something we struggle with and we carry on.

Troy: Yeah, it's funny how often that happens though. In your case, you just kind of wrote it off. You said, "Well, other people in my family have experienced this and this is just the way it is." Until it sounds like it got to a point where it was so limiting that that was a wake-up call when you finally just missed work because you couldn't even run. You're hobbling down the street where you're just like, "Hey, this isn't normal."

Mitch: A jaunty hobble. Wait, what was it? Was that the word? Yeah. Okay.

Scot: Yeah, let's get it right.

Troy: A jaunty hobble.

Scot: Yeah, try to give him some dignity, okay?

Troy: It was a spirited, jaunty hobble.

Jonathan: A spirited hobble, yeah.

Troy: That's right.

Scot: And not only did Jonathan dismiss it, the healthcare professional dismissed it. And I can't tell you how frustrating that is. With my dad, who was in his 80s, he would complain about things and the doctors would be like, "Oh, it's just part of getting old." He couldn't swallow. Eating was no longer something he could really do. And they're just like, "Oh, it's part of getting old." His legs would tingle and get cold. "Oh, it's just all part of getting old. Maybe you should stop drinking so much coffee." Just kind of that dismissive . . .

I don't know why that happens. Troy, do you have any insight why that happens? And it happened to Jonathan. "Oh, it's the sciatic nerve. I guess go do therapy."

Troy: Yeah. I mean, it happens because 90-plus percent of the time they're right, and you can't deny that. Ninety-plus percent of the time they're right, and in those cases, it may just be some sciatica and they go to physical therapy and they get better.

It's the same idea when you call computer support and they're like, "Well, did you turn your computer off and back on?" Well, of course, I did. But some people haven't done that. And then it's like, "Well . . ." So you're going to walk through all these steps before someone finally realizes, "Okay, you've taken all the steps, it's not working, something else needs to be done."

And I see this all the time in the ER because we get so many patients who have gone to doctors and gone elsewhere and have been frustrated and haven't gotten answers and have felt blown off. And they finally are like, "Well, I'm going to The U and I'm going to figure this out." I can't say we always figure it out, but they're frustrated.

But again, I think it's just normal human behavior where you say, "Well, common things being common, let's try the common things first." So you kind of have to expect that. And as you're working through the medical system, you kind of have to jump through the hoops, but then you just have to keep pushing when those answers aren't there.

Scot: So, Jonathan, did you do some physical therapy and do some of the things that were suggested at first? And then where did it go from there?

Jonathan: It took me probably a year to wise up to, one, the cost and, two, just sort of the embarrassment of the situation to actually commit to it.

When I first met with the doctor, one thing that I had noticed personally was this weird food sensitivity to when I would have flare-ups. And despite looking at the internet and trying to figure out if that's relevant to anything, I couldn't find much. And so I brought this up hoping that the doctor could illuminate this. And like the rest of it, he didn't really have much to say.

It was after that meeting, I'm on the app where you can look at your chart and whatever else, and I happened to find the note from the examination visit, and it goes on to say something like, "Patient presents lower back pain, hip pain, so forth, and advocates for the special diet of Dr. So-and-so, and I encourage him to eat healthily."

And this Dr. So-and-so I'm omitting intentionally because I didn't know who this guy was. So it was a note on my chart of a conversation I didn't exactly have. When I looked this guy up, he turned out to be a celebrity self-helpy, anti-inflammatory diet guy, the kind of guy that you'd buy his book in an airport or something.

Jonathan: At first, it was like, "Oh, they made a mistake. They switched my note with someone else." And then I thought, "Wait, did I just get profiled?"

Mitch: Oh, interesting.

Scot: Yeah. From a communication standpoint, I can completely understand what just happened there, right? That doctor has some sort of preconceived notion of that individual, which it sounds like could be accurate, right, Jonathan? I mean, you kind of maybe made the same conclusion. Heard that information and then just kind of didn't pay attention the rest of the time or just thought, "Oh, it's another one of these." Just goes with kind of their preconceived notions.

Troy, do you think that's right, or not?

Troy: Yeah, I do. And it brings up a great point. Doctors are human. They are prone to every potential bias you can imagine. There are so many studies out there that looked at physician biases for any sort of demographic characteristics or, like you said, even looking specifically at biases in terms of diet, or even diagnoses. If certain people have had certain diagnoses, that creates bias. So it happens. There's absolutely no question about it.

And it's something that I think, as physicians, we try to acknowledge that and we try to avoid those biases, but yeah, someone may hear a certain thing and it sounds like in this doctor's mind, he immediately associated you with this diet and this individual, and everything you said then kind of went back to that.

And I think when that happens, you just have to say, "Well, I've got to go see someone else." If you're already being kind of pigeonholed and saying, "Well, this is what your problem is," and it's clearly not the case, then I think you need to be willing to go get another opinion.

Scot: And you bring up a great point too. From my perspective, I think doctors know it all, right? But you're right, they're humans. And each doctor is going to have different areas that they're going to know more or less about. Even general practitioners are going to have . . .

And there have been times where . . . I have these weird thumb nails, and I, for a long time, would ask every doctor I visited, "What's causing this?" And they had no idea. And then one day I was at a dermatology appointment and the guy looks at my nails and he goes, "Oh my gosh, that's this condition and blah, blah, blah, and this is what causes it." It was crazy.

So sometimes you do have to remember they're human and maybe that particular one doesn't have the answers, or for whatever reason, you weren't able to communicate effectively with them and you have to try somebody else.

Troy: Yeah, that's exactly right. You've got to figure you go to four years of medical school, three years of residency, and then you have certain people who then go on and do another three to four years of fellowship training and specialization. And obviously, people with certain specialties are going to be more adept and more capable of diagnosing certain conditions.

So that's just a simple reality that, number one, there are limitations in terms of bias. Number two, there are knowledge limitations. And so yeah, just because you hear one thing from one doctor, you could go to another doctor and get something completely different. Again, that's why I think you have to advocate for yourself. And if you're not getting the answers you need, go get another opinion.

Scot: Want to get back to Jonathan and your story and continuing this, but I think another interesting point is if you're going to see a male doctor, if they have biases, that means they might also have this opinion that you shouldn't complain. To some extent, unless you're in there with a broken arm, you shouldn't complain. Men do not complain about their health, right? They would have those same potential biases, wouldn't they, Troy?

Troy: Potentially, yeah. I think that's possible. I would not say to assume that from a man, but . . .

Scot: At the top of the show, you even talked about you're a doctor and you still have some of these biases.

Troy: Oh, yeah. Well, there's no question. But again, I'm a horrible patient, so don't think I treat my patients the way I treat myself as a patient. Don't think that at all.

But you're right, I would not assume . . . Also, I think you have to be careful as a patient and your assumptions as well. I don't think you want to go in assuming because of a person's gender, race, anything else that they're going to have necessarily certain biases associated with that. But I think you just have to recognize that doctors are human, they have biases, they have knowledge gaps, and I think that's just the bottom line.

Scot: What happened to you, Jonathan, after that visit then? Where did you go from there? Were you discouraged or did you continue on?

Jonathan: So I do go to physical therapy. I decide that that is ultimately what's needed, but not without a follow-up where I learn kind of a double-edged sword of being an enthusiastic patient.

I came in a year later. Having felt dismissed, I come back to the same doctor. So I didn't look for a second opinion. I should have. I go back to the same doctor and this time I'm armed with many, many hours of WebMD/everything else you could think of, PubMed, anything that I could find. And I say, "Doctor, I have ankylosing spondylitis, and I think I need a referral to a rheumatologist." And I don't know how many doctors who may be listening to this enjoy it when their patient comes in and self-diagnoses.

Troy: It's usually a hit with doctors. Doctors don't have egos at all. They usually love it when you do that.

Jonathan: Especially when it's a particularly rare, bizarre genetic rheumatoid-arthritic type condition, right?

Mitch: Oh, yeah. When I was looking up some of the numbers, a Johns Hopkins study done just the last five years, it's like 0.4 out of 100,000 people. It's a really rare disorder.

Troy: Yeah, I'm sure that went over incredibly well. I'm curious what was his reaction when you said that.

Jonathan: "Ibuprofen and physical therapy." It was the same thing as a year prior. So I jumped through those hoops. I do about three months of physical therapy. There is improvement, but not as much as they were hoping. I can now run, or jog, which was pretty significant in my case. And so that was good.

And I go back to the doctor. I say, "Okay, are we good for a rheumatologist?" He says, "No, I'm going to refer you now to a physiatrist." And I had never heard of this before.

Scot: What is a physiatrist then?

Mitch: That's what I was about to say. A what?

Scot: You've got a couple other guys that haven't either.

Jonathan: Best I could gather, it's an MD, sports medicine, and he is certified to do sort of steroid injections into the spine to bring down inflammation. That's all I know.

Troy: Yeah, it's someone who's done residency training in physical medicine and rehabilitation, which we just call PM&R. So, yeah, that's exactly it. They work with people with . . . there's a sports medicine component to it, like you said, injections, those sorts of things. So you're right.

Scot: So, at this point, Troy, the doctors are no longer trying to look for the cause. They're just trying to manage the symptoms, it sounds like.

Troy: It sounds like it. Yeah, it sounds like whoever was seeing Jonathan was fairly convinced that this was just a sciatica thing. It sounds like he very much kind of anchored on this diagnosis of a bulging disc in the spine where you have a disc that bulges out the side and that pushes on the sciatic nerve and that causes pain, and that was the primary source.

It's a pretty common approach. Like I said, most of the time, that's what causes at least some of these symptoms. There were definitely some symptoms with Jonathan that didn't really make sense with that. But most of the time, physical therapy works. And then if that doesn't work, you can see someone who can do injections and they can do injections right there at that bulging disc. That can oftentimes help, with a steroid injection there.

But that's exactly it. It sounds like at this point it was very much like, "Well, this is the case. This is the treatment route we're going to take. Physical therapy didn't work. Let's try injections."

Scot: So same doctor, two different times. Is there something, Troy, Jonathan could have done with this doctor to perhaps continue this conversation of what Jonathan thought it was? Because it sounded like the doctor was very closed to that.

Troy: Yeah, I think at that point, if you really think it's something else and you're continuing to be pushed down this other route where he is very much anchored on this diagnosis of sciatica, and you're just like, "No, this isn't the case" . . . I just think at this point it sounded like it wasn't getting anywhere.

If someone came in, it is always a challenging situation because sometimes people come in and they have looked things up on WebMD and have looked things up on Google and it's just like, "No, that's not the case." Sometimes you can kind of go down the rabbit hole with some of the Google stuff you find.

But again, it sounds like in this case things just weren't going the right direction and none of this was effective. I would expect at least some response to physical therapy. It sounds like maybe there's a little response, but I would expect a bit more than that. So in my opinion, at this point, if things just weren't going the direction they needed to go, I think it's a great idea to go see someone else and see what they think.

Scot: And what did you do, Jonathan?

Jonathan: Well, I continued to do research, and something that had come up that didn't occur to me before . . . I was really hung up on this food sensitivity thing. It was one of the few things I had control over as a patient. If I eat, if I drank alcohol especially, there was a flare-up, and I could control that. The ibuprofen was starting to not help so much, and the physiatrist gave me a muscle relaxant at one point to do sort of as needed.

And it was at one point where I was interested in kind of taking it down a rheumatology route where it talked about iritis. And it just happened to be that in college, I had this weird stint of an inflamed eyeball such that you have a weird-shaped pupil. I happened to be with family at the time, and so they run me to the ER and they treat it with a topical steroid, and then it was done. It was a non-sequitur to me as a patient, as someone who didn't go to med school.

And so I bring this up, this extra piece up to now the physiatrist who says, "Oh, you mean iritis? Like the inflammation of the iris?" And it's like, "Yeah, that thing. I had that thing." "Have you had it since?" "No." He said, "Well, there is a blood test we can do for genetic markers for certain rheumatoid conditions. What do you think?" And I say, "Heck yes." And I didn't know about this. So finally, there feels like a breakthrough in movement there.

And long story short, I was positive for those genetic markers and I got the referral to the rheumatologist.

Troy: Nice. So you got where you needed to go then. I mean, it took a while, but eventually you got there and it's great that this other physician, this physiatrist, picked up on that.

Jonathan: Yeah, it really was. And unfortunately, it was like an eight-month waitlist. I don't know how much you want to lament the medical institution at whole here, but it was basically a two-year journey to get to the rheumatologist.

Troy: Yeah. Again, it's so frustrating, but that's not atypical, unfortunately.

Scot: How did the physiatrist know? How was that even in their wheelhouse?

Troy: I mean, it's something they may have seen before. It would be something that potentially a physiatrist would work with someone with ankylosing spondylitis maybe in some degree, just in terms of range of motion, mobility, those kinds of things. So that may be part of it.

But it also may be you were just fortunate to have a physiatrist who was very attuned to that and very open to making that connection, and finally got you where you needed to go.

Scot: Did you feel that the physiatrist was open more to conversations, that they didn't kind of have their mind pre-made up as to what was going on?

Jonathan: Yeah. And I also think I learned the lesson of not coming in and telling the doctor how to diagnose me. So that was stupid on my part.

But I do admit to going into the psychiatrist's office and saying, "Okay, look, I think it's this, but I'm not going to say anything. I will just report the symptoms that I know are in the literature that are true to me, I'm not making anything up, and add this one part that was missing."

And to be fully fair to the first physician, had I mentioned the iritis case, it could have been very different. From a patient's perspective, I didn't know that iritis was any more connected than chickenpox. So when you have that 15-minute window with your doctor and they say, "Well, what's happening? What's going on?" deciding what's relevant as a patient can be a challenge.

Scot: Yeah, totally.

Troy: Yeah, it is. But all that being said though, Jonathan, I think if someone has a specific concern about a specific condition, I do really appreciate it if they just say, "This is what I'm really concerned about."

It is frustrating that you specifically brought that up, and then it didn't really go anywhere with the first physician you saw, because I think it's at least worth saying, "Well, why do you think that's the case? Let's explore this further." And then maybe ask those questions, like, "Well, have you ever experienced iritis? Or have you ever experienced any of these other symptoms that are associated with this condition?" to at least give it some thought and explore it a little bit further.

I always tell people if you have something you're specifically concerned about, bring it up. Don't necessarily tell the doctor, "This is what it is," because again, some people are open to that, but a lot of people are just going to just shut down as soon as you do that. But I think it's worth at least bringing it up.

And in doing so, acknowledging, "Hey, I'm not a physician. I just had these symptoms. I've read some things about it. What do you think?" Just kind of that approach.

Scot: So then you were referred to the rheumatologist and you got the diagnosis?

Jonathan: Yeah, within a couple visits, she diagnosed me with . . . and I say a she. We mentioned the guy versus gal doctor thing. She's fantastic. She was very receptive to everything. She appreciated the way I was trying to problem-solve for things. And developing that kind of relationship, had that been possible with the first doctor, it could have been very different. She was great.

So yes, she diagnosed me with ankylosing spondylitis, put me on a pretty powerful medication. It's called a biologic. It's the general family name of it. I can run. I participated in the Mitch Sears . . . what was it called? The 5K.

Troy: Who Cares About Mitch's Health 5K.

Jonathan: Yeah, I did.

Troy: Nice.

Jonathan: Pulled the thread on that a little bit.

Scot: Oh, yeah. The pinnacle, I'm sure, of your health journey.

Troy: That's great.

Scot: Wow. What a journey. And how much time did you spend on the internet trying to figure this out? How many websites did you go to? I mean, if you had some advice to give to somebody about how to research something like this, did you pick up any pointers? Or is it you've just got to log the time?

Jonathan: There was a lot of garbage online, I want to say. There were a lot of weird rabbit holes with leaky gut syndrome, because I was hooked on this food sensitivity thing, and that was maybe a non-sequitur. Later, it turned out to be a sensitivity towards FODMAPs, which is a whole different thing. But these are different sort of complex sugars that some people have a hard time digesting, and maybe there are some co-factors there. I don't know. But it was just treated differently.

Stay humble. Realize that the guy or gal in the examination room probably, if they're doing their job right, really does want to help you figure things out. And find someone who is working with you.

And the normal relationship, I think, I hope, for a patient is to feel like they're being heard and being at least reasoned with. And it's up to the doctor to keep me from going down a rabbit hole instead of just outright dismissing me, and giving you ibuprofen and sending you to PT.

Troy: Yeah. And it is tough. I think you just always keep that in mind, that when you're going to a primary care provider, you're seeing someone who may be seeing three to four patients an hour, has a 15-minute window with you, and they may see 20 other patients that day who have similar symptoms and they may have that response.

So again, I think just accept those limitations and accept that you're trying just to work through the system, and then don't hesitate to go see someone else if you need to.

Yeah, I think that's my takeaway. Again, I see so many patients who are in a similar situation, who are frustrated, who have been trying to work in the system, just aren't getting an answer, and aren't getting the referrals they need.

And you did exactly the right thing. You jumped through the hoops and you followed the path that this physician laid out, and then you saw someone else, and they fortunately had an answer for you.

I'm sure you've met others who also have a diagnosis of ankylosing spondylitis, at least on an online forum or something. And I'm guessing there are others out there who have gone through that process for years and years and years, and it was maybe 10 years down the road and they finally got a diagnosis. So it can be something you just have to keep searching for answers until you find the right person who can help you.

Jonathan: It's so challenging because it's pain, and pain is subjective. And trying to figure out how that connects to a wider health story about a person, it's tough.

Scot: Yep. And especially as a man, right? Pain is subjective. "You should be able to deal with it. It's probably not that bad." Right?

Mitch: "You can hobble."

Scot: Yeah, you can hobble.

Troy: Exactly.

Scot: Jonathan, what is the one thing you would like a listener to take away when it comes to your health and being an advocate? If you could go on top of the mountaintop with our bullhorn here, what would you shout to all the men listening?

Jonathan: Yeah, don't be afraid to ask questions. I think one of the ways to keep it from being confrontational is to say, "Okay . . ." It's to not come in with a diagnosis necessarily, but to ask questions about it. Say, "Look, I have questions about this particular situation. It seems relevant. Maybe it's not." Keep it humble. Understand that it's a partnership with you and your healthcare provider.

There's been a change over the past few years of you listen to your doctor because doctor is always right to this more collaborative approach. And I've certainly seen it even being 36. People who are younger are going to be more accustomed to the new way of doing things. Older patients may prefer being told what to do. But asking questions I think would be the number one thing that I wish I did years ago.

Troy: Yeah, that's a great point you brought up too, Jonathan. There are more and more studies out there too on what's just referred to as shared decision-making where it's not like the doctor says, "Well, you need this test or you need this." As a doctor, I can say, "Well, I think the odds of it are this just based on what you're telling me. We could do this test to search more for it."

For me, it comes up a lot more with abdominal pain or heart attacks or diagnosing chest pain. I shouldn't really say heart attacks, but just chest pain of saying, "Well, it could be this. It could be this. These are the tests we can do. This is what I recommend. I think the odds of it being this are 2%, but if we need to get a CT scan, let's make that decision together."

So shared decision-making is very important, and it's a great point you make, Jonathan. It's a team effort, and don't expect for the doctor to have all the answers. And hopefully they're not in a position where they feel that they need to tell you, "This is the way it is," and you can at least talk through these things with them.

Scot: Jonathan, I can't even . . . the way you stuck with it was amazing and inspiring. Thank you for sharing your story with us today. And I'm glad that you finally found some satisfaction and you're able to get back to a quality of life. I mean, there's nothing more frustrating than not being able to do things that you want to do, or things that you have to do. Like, when you're late . . .

Mitch: Yeah, catch a bus.

Scot: Yeah. So you stuck with it, you had confidence to stick with it, you did a lot of research, you did work out that partnership with your physician, and I think it's just really, really awesome and it's a good lesson for all of us guys to learn.

Do you have a health issue that's been unresolved and maybe you need to advocate more strongly for your health, or maybe a story like Jonathan's? We want to hear it. You can reach out via our email. That's hello@thescoperadio.com.

And if you do have something going on, we hope this episode will motivate you to advocate for your health, even though it might be time consuming and it's a pain and it can be discouraging. In Jonathan's case, it was worth it, and it might be worth it in your case too.

Thanks for listening, and thanks for caring about men's health.
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Scot: Troy, I've got a question for you. I'm going to say a word, and I want you to tell me the first thing that comes to mind. Botox.

Troy: Crow's feet.

Scot: Okay. Mitch, Botox.

Mitch: Wrinkles.

Scot: All right. That's the same for me, crow's feet and wrinkles. Today, on "Who Cares About Men's Health," we're going to talk about Botox, not only for a more youthful appearance, but also some other things that it can treat that men might find useful. And also, we're going to answer the question "Is it safe?"

This is "Who Cares About Men's Health," providing information, inspiration, and a different interpretation of men's health. I'm curious if you might have a different opinion about Botox by the end of this episode. We're going to find that out. My name is Scot Singpiel. I bring the BS. The MD to my BS is Dr. Troy Madsen.

Troy: Hey, Scot. I'm excited to learn about Botox for something besides my wrinkles.

Scot: All right. A guy who's working on his health and always has a unique perspective, Mitch Sears is on the show.

Mitch: I'm curious because TikTok keeps telling me in my 30s, I should start preventative Botox, and that worries me. Am I doing something wrong?

Scot: And Dr. Sarah Akkina, director of Facial Plastic and Reconstructive Surgery in the Department of Otolaryngology at University of Utah Health. Welcome to the show.

Dr. Akkina: Thanks so much for having me. I'm very excited to blow your minds about the other uses of Botox, botulinum toxin.

Troy: This is great.

Scot: I actually looked it up and it was really shocking some of the other things that Botox can do, because at the beginning of the show, as we all said, we tend to think about crow's feet or wrinkles, using it to get a more youthful appearance, right? And a lot of times, guys hear that word, too, and we have that misconception that maybe it's not for us, right?

Mitch, you had a similar experience. Tell us about how you reacted when you heard that you needed Botox for another reason.

Mitch: Oh, frustrating. So I had Bell's palsy, right? We've talked about it. It's another episode. We can direct you towards it. But one of the weird after effects was that I have a thing called crocodile tear syndrome, which means when I eat, my eye will sometimes tear up. Big tears sometimes, whatever, it depends on what I'm eating, etc. It just is a nerve that didn't quite match up right.

And so I went to the ophthalmologist and they looked at it, and the potential treatment was Botox in that area to see if we couldn't numb up the nerve that was misconnected.

And unfortunately, I immediately just said, "Nah, I don't do Botox." I don't even know where that comes from, this idea, "Yeah, I hear what you're saying, but no, that's not for me. I'm a man." How dumb is that?

But then afterwards, I thought about it and whatever, and there were some other things that I wasn't quite super excited about. But yeah, the second that word Botox came out, I shut down very quickly.

Troy: Oh, I think I would do the same thing, Mitch, if I had to tell people, "I'm going in for my Botox injections." Number one, I wouldn't tell people that, but if I had to admit it, I would be embarrassed.

Scot: Yeah. You would rather cry when you eat, huh?

Troy: I'd just rather tear up.

Mitch: Yeah, I would apparently.

Scot: Than tell somebody you were . . . Yeah. Dr. Akkina, is this how guys typically respond when they hear Botox, that word?

Dr. Akkina: Yeah, absolutely. And I think it's funny because in the zeitgeist in our society, it's become so synonymous with cosmetics and appearance, and then people think, "Oh, it's mostly for women." But there are so many different ways that we can use it.

So stepping back, Botox is a brand, first of all. So it's a type of botulinum toxin. If we want to be more cool, if you want, we can say the toxin.

Scot: Yeah, you're getting the toxin.

Dr. Akkina: So you can say you're going in for your toxin treatment.

Troy: I'm getting my toxin.

Mitch: Rad. I love that.

Dr. Akkina: That's right. So, heretofore, we'll say toxin. So your toxin treatments, the best way to think about it is it's this really cool drug that we can use that basically shuts off muscles right at the junction that the nerve is giving them input.

So when you think about it like that, this toxin can be used to basically shut down any muscle that we feel like is not working well. In Mitch's case, one of the kind of muscles that I think you're talking about treating for the crocodile tears, it's basically things around the lacrimal gland. So we can use it to stop that gland from secreting things because you're affecting that muscle function.

And another way that we can do that in a similar case, which probably a lot of people don't know, is you can actually use toxin to treat over sweating. So actually there are especially a lot of men who use it. Actually, we can use it in your armpits or other areas that you feel like you're sweating a ton and it's embarrassing or you're just not into it. We can treat that with Botox, or toxin, as we're saying.

But that does require a little bit of higher doses than we're typically talking about versus things like wrinkles. So that's one option that we can do.

Another really great use of toxin is in your masseter muscles to stop teeth grinding. Do any of you guys teeth grind?

Scot: Yeah.

Dr. Akkina: Fancy word, bruxism So that masseter muscle is often the culprit in what's really causing that grinding.

And fun side note, my husband was very much like you guys and was very anti all sorts of toxin treatment. But when I told him about this and he had been having a lot of struggle with teeth grinding and stress, things like that, he actually let me attempt to treat his masseters and his teeth grinding stopped. It was amazing. And to this day, this is actually two years later, he's still not grinding his teeth. I think because his body just learned to adapt without it a little bit.

Troy: After one injection, one treatment?

Dr. Akkina: Yeah, after one series of treatment.

Important things to just remember for toxin treatment, it does take about a week to bring into effect. And then it only lasts three to four months. So you do have to know that. So typically that effect wears off. Some people are able to use that for teeth grinding, for instance, just to kind of rewire their body a little bit. Other people certainly need treatment still every three to four months.

But it's a great way to, like I said, selectively stop these muscles from over-activating and to help you in whatever that means for you for that muscle.

Troy: And what about things like facial twitches? If someone notices their face gets kind of twitchy when they get anxious or something like that, have you used it for that?

Dr. Akkina: Yeah. So blepharospasm, or that twitching around the eyes that can happen when people are stressed, tired, things like that, super common indication, and actually one of the first indications for using Botox, or toxin.

So toxin initially was actually developed and promoted in the '80s by ophthalmologists who were treating something called strabismus or basically crossed eyes where your eyes are misaligning. And that was one of the first uses in humans. And then quickly after that, they realized they could use it for blepharospasm or the spasms around the eyes. And then that led to saying, "Hey, we don't have crow feet anymore. How exciting."

Scot: That was the side effect, huh?

Dr. Akkina: That's right. So that was a side effect of all the initial use of toxin. So that's how we started to develop in the market.

And all jokes aside, there are some very serious other medical conditions that we can treat with toxin. One of the other things in my field of otolaryngology is for people who have spasms in their larynx. So you can have these spasms that really prevent you from having normal speech and normal talking patterns. And our laryngologists, or throat specialists, are able to basically direct toxin to those specific muscles and help shut that down so people can talk normally.

Another really common indication, probably more than that, is things like migraines, or anything that you can think of that's a muscle chronically or misfiring where we can kind of gently turn that off.

Now, it's a little tough because the dosages are obviously all different for different areas. So, depending on what you want to treat and what the indication is, insurance can cover some.

So, Mitch, if you'd gone forward with your crocodile tears, it's likely that insurance would cover that because that's a medical disease and illness that you're treating with it. Certainly, for cosmetic things like the crow's feet and forehead wrinkles, things like that, that is out of pocket.

Troy: And where would you do an injection for a migraine?

Dr. Akkina: Yeah. So you can inject things like the temporalis muscles and sometimes even behind. Our neurology colleagues do treatments for that typically. But yeah, there are different things that we can work.

For me, I used to get a lot of tension headaches, and when I started getting toxin for my forehead wrinkles, actually my tension headaches went away because I think I wasn't contracting or squeezing my brow angrily all the time.

Troy: Wow.

Dr. Akkina: I don't actually do that, for the record, but . . .

Scot: You don't sound like an angry person, so I can't imagine that.

Dr. Akkina: Well, I can't contract my brow right now.

Scot: Because the toxin shut that muscle down.

Dr. Akkina: Because of the toxin, yes. Very smooth and content all the time now.

Scot: So what is the actual name of it, not the brand name?

Dr. Akkina: So botulinum toxin, that's the actual name.

Scot: I don't know. That doesn't sound too good to me. On one hand, it sounds cool because, "Oh, I'm tough, I'm taking my toxin," but on the other hand, is that safe?

Dr. Akkina: Yeah, there are very little side effects. So a few important things is that whenever that toxin is injected, it can diffuse to other things in the area. And this is a little dependent, of course, on where it's injected, what the concentration it's injected at, things like that.

So you do have to be careful, and that's why I always recommend going to someone who knows what they're doing and is very familiar in the anatomy and structures in whatever area that they're injecting.

But it's relatively safe. The nice thing, again, is that while it takes often five to seven days to act, it goes away in three to four months. So if you don't like whatever the action is, it will wash out eventually.

Very few people do have allergies to toxin. If you have egg allergies, actually the botulinum toxin A in Botox, for instance, is formulated with egg proteins, albumin, so you have to be a little bit careful to just think about that.

And if you have other things like neuromuscular diseases or disorders, yes, you definitely have to be very careful about the effects of it.

Also, certain antibiotics, like aminoglycosides, botulinum toxin can potentiate some of the effects of that.

But outside of those pretty specific circumstances, it's got a really safe profile for use in a lot of different ways.

Scot: I've heard of something else called botulism. Is it related to that?

Dr. Akkina: Yeah, the toxin is the same, believe it or not. So that is how they initially learned about it. And yes, that's a serious disease. That is more if you have canned food, like cans that are crushed or look funny or things like that, those can harbor botulinum toxin. Honey can actually technically have some relation to that too, but not in the ways . . . mostly just serious for babies and infants, things like that.

Scot: Sure. But the way you're using, it's . . .

Dr. Akkina: Yeah, very different.

Scot: It's safe. I'm not getting any of that illness.

Dr. Akkina: Correct. Yes, you're not getting any of that illness from an injection of the toxin.

Troy: My one piece of advice, Scot, would be to avoid botulism. Don't drink pruno. It's a prison wine. We had a big case series we published. A bunch of prisoners who unfortunately drank that, and they had a potato in it, which was the source of the botulism. But it was a big CDC report that we published with multiple prisoners. So yeah, if you want to avoid botulism . . . But this is not botulism. I think that's the point here. You're not putting yourself at risk of botulism.

Dr. Akkina: Yes, correct.

Scot: So it has a lot of really, really cool uses. The sweating thing, I bet you, for some guys could really be a game changer. We talk about the Core Fore, and emotional and mental health is one of them, and if it makes you self-conscious or anything like that . . . Lazy eyes, I think you mentioned that as well. Any sort of spasm disorder. To remove that from your life, I would imagine, can be a great thing.

Do you have any guys that have ever used it for those purposes and how did it change their lives?

Dr. Akkina: Yeah. I think the sweating thing in particular, I remember a patient a few years ago who came in, it was a gift from his mom for his 19th or maybe his 18th birthday, because he was going to be taking prom pictures soon and he didn't want to sweat through his shirt during prom, which is actually a really sweet gift I thought from his mom. So small things like that, I mean, they can make a big difference in people's lives.

Troy: Sweaty palms, people use it for that?

Dr. Akkina: I've not personally done that, but I think in theory you could. When you're treating large areas like that, again, you do have to be a little bit careful because it's probably just going to be a high dose. So it might just be a little bit dose-limited in terms of having to inject all these little areas there. The other tough part there is you wouldn't want to turn off the muscles in your hand.

Troy: Right. That could get awkward.

Dr. Akkina: It's always a balance. You can inject it in glands and things like that, but yeah, if you're injecting around muscles, you have to be prepared that it might diffuse a little bit.

Scot: So it can do a lot of really cool things. And since you're here, let's talk about using it to remove wrinkles. I'm just gathering information. I'm not saying it's for me.

Troy: Asking for a friend.

Dr. Akkina: For a friend, yeah.

Scot: I'm just asking for Troy.

Troy: I was curious. Yeah.

Scot: So, actually, I want to throw that out. Mitch, you had mentioned that it had been recommended that maybe . . . well, on the internet . . . that you start doing some preemptive Botox.

Mitch: Oh, no. I have a friend in my life who has also said it's not that big of a deal and if you start now, you'll never have wrinkles. I don't know if that's true or not, but . . .

Scot: Have you considered ever using Botox for a more youthful appearance?

Mitch: See, I have a pretty youthful appearance anyway, and the rule I've always told me is as long as I could play a high schooler on a CW original, I am okay. But there is a part of me that does wonder . . . I don't know. I don't particularly love the idea of becoming super duper wrinkly. Maybe. I'm open to it, but I'm not super excited about it.

Scot: What would your dad have to say about all this?

Mitch: I don't know. He's probably listening right now. I'm sure I'll get an email.

Scot: Troy, is this anything you've ever considered?

Troy: Botox? I haven't seriously considered it. No. It's probably crossed my mind because I'm at a point in life where I do see more wrinkles appearing, but I can't say I've ever really looked into it beyond thinking, "Huh, maybe."

Dr. Akkina: Well, fair enough. I think a lot of patients, and especially men, are in that boat. But it is nice because from that . . . Mitch, you asked earlier I think about the preventative part. So Botox or toxin can't take away wrinkles that are already formed.

So when I think of wrinkles, there are both static wrinkles and dynamic wrinkles. So when we're young, if I raise my eyebrows, you can see typical areas where my muscle is causing contraction of the skin. That's causing temporary wrinkles. But when I relax, you can't see any of those wrinkles. Versus in another 20 years, unless I keep my toxin up, then those wrinkles are kind of permanently etched in the skin.

So important distinction. Toxin can't take the permanent wrinkles away because that's just part of your skin at that point. But it can always, as we said, inactivate the muscle under it.

So for forehead wrinkles, for instance, that's the frontalis muscle. We can make that muscle calm down, be much less active with the toxin, and then you're not actively working to keep forming those wrinkles. So that's why it can still help even if you have static wrinkles that are there.

Scot: What are other wrinkle locations it could help? So crow's feet, if I already have them, that's not going to help that, right?

Dr. Akkina: It still will make I think the appearance of the deep wrinkles less, right? If you have the crow's feet, yes, they're there, but if you're not activating the muscle all around it, it can still look a little bit softer, a little bit less aged overall.

For other areas . . . So we talked about the forehead. The between-the-eyes area, that brow, that's another super common one. And especially for men, right? It's that kind of furrowed, angry brow look. We call those the 11 lines because it leads to those two often horizontal lines in the very middle of your forehead. Those can respond really well to Botox.

And again, if you have permanent wrinkles there or static wrinkles, it's not going to take them away, but it does soften the overall appearance of your brow. It can help you look a little bit less angry or things like that.

Scot: How many men do you see in your office that actually come in and get treatment? And what are their reasons? Because I had read somewhere that Botox has just exploded among men. I think a 400% increase in treatment since 2000, so a lot more men are getting it nowadays. Why are they doing that?

Dr. Akkina: And most of it is for appearance. Yes, overall, for my patients coming in for toxin treatments, less than maybe . . . It's certainly a minority. I would say probably at this point, maybe 5% to 10%. But among those men, certainly things like the forehead wrinkles, but the masseters is also another really common indication for people who want to try to stop grinding their teeth.

That's another actually great thing that I'm getting more folks coming in for. I'm glad that it's getting out there that's something that we can use toxin for.

Scot: Yeah. I Googled a couple things because I was curious. I was like, "Gosh, is it vain that I want to get rid of my wrinkles?" For me, it's not actually wrinkles. I don't think Botox is the solution to my problem. I have these bags under my eyes. I look like I'm constantly fatigued. Botox isn't going to help that.

Dr. Akkina: No.

Scot: And I never thought I would think about getting any sort of cosmetic anything until we came into this world of Zoom. I'm looking at my face all the freaking time and I just look so run down and so tired, and I'm afraid people in the office are going to think, "Does he ever sleep? He looks sleepy."

So social media was one of the reasons why. And I thought, "Well, again, that's kind of vain." But then it said online dating. Well, okay. We're representing ourselves in a completely different way than we've ever had to, our dads or grandfathers have ever had to, in high resolution. So do you guys come in for those reasons and . . .

Dr. Akkina: Yes, absolutely. I had a patient the other day who was telling me that he's a little bit upper level in his company now, but he feels like some of the other people in the company are much younger than him and seem more youthful. And he gets embarrassed on these Zoom calls where he feels like he's the old person in the group, and he just wanted to feel more youthful.

So talked to him about things like facelifts, blepharoplasty. That's the under-eye or over-eye surgery where we try to help reduce that evidence of the extra skin and the bags, things like that. And he's really excited to get a little bit more of a youthful appearance just so he feels like he can stand up with the younger folks at his company.

Troy: I was going to say what about . . . The big thing I've heard with Botox is kind of the mask face where you get to where you always look like . . . Your expression doesn't change.

Mitch: You're a Barbie?

Troy: Yeah, exactly. Is that common, or are people just overdoing it when that sort of thing happens?

Dr. Akkina: Yeah, I call that a frozen face or freezing someone out. I don't like to do that. And when you have an injector that you're going to, I think talking about what your expectations and what your goals are is super important. And then having your injector listen to you and make sure they're not overdosing things to freeze things out is important.

So when folks come to see me, I talk through exactly what they're interested in getting. We talk through wrinkles often. And then I discuss my normal dosages.

And usually, I like to err on the lower side, right? I never want to free someone out. That's just my preference. So starting on lower ends of dosages, and then always coming to back for touchups, things like that. Super easy to do.

In general, when we go through the process of injecting Botox or Dysport or Xeomin, it's a very tiny needle. It's a couple little sticks. Yes, there is a risk of just a little pinpoint bleeding, things like that, or just a tiny bit of bruising. But overall, it's a pretty short and sweet procedure.

So we can start at low doses. I can have people come back and we can kind of keep augmenting until we find a regimen that they like in terms of its outcome.

Mitch: Now, I've heard about Botox parties. I've heard about going to a "spa." Is there a benefit? I mean, it sounds like this drug is pretty safe. Is there a reason that we should maybe err towards going to a medical person rather than some of these other things?

Dr. Akkina: Yes, absolutely. So we talked a little bit about some of the risks. I just mentioned injection risks certainly are something to always think about. But making sure that whoever is injecting your face is intimately familiar with those muscles and the other things in the area that could get affected by your injection is so important.

So one of the other common things that can happen if you're injecting around the eye, and especially if you're injecting in certain areas, is that toxin can diffuse and affect one of the upper muscles in your eyelid and basically give you a droopy eyelid. So that's something called ptosis.

And especially for cosmetic things, it's a little bit less common, but you want to make sure that your injector is injecting in places where that's a much lower risk. Certainly, we can treat that with eyedrops, and often it only acts for a few weeks even.

But yeah, that's a small example of you want to make sure you're going to someone who knows what they're doing and can provide the treatment in the places that you want it, giving you the effect that you want, and the dosage that you want.

So yeah, Botox injectors come in all sorts of varieties. I've even seen dentist office offering Botox. Have you guys seen that?

Mitch: What? No.

Scot: No.

Dr. Akkina: I mean, I think if you're well trained and have good results, okay, for sure. But yeah, you just never know and I think it's safer to make sure you're going to a place where the person knows the face, knows the muscles, knows what they're doing.

While it's safe in general, you can have unwanted consequences. You can freeze out a face. You can cause droopy eyelids. You can affect things like the smile overall. If you're doing masseter Botox, sometimes that can diffuse in different places. So you just want to make sure someone's really knowledgeable when they're doing it.

Scot: Those are some really good tips on how to look for a professional. And also, I love the fact that you said you should have a conversation and make sure that you feel comfortable with the person . . .

Dr. Akkina: Yes, absolutely.

Scot: . . . that's going to do it for you.

So I'm not going to pass judgment, I guess. I think the Scot of 10 years ago, and certainly the Scot that is the son of a South Dakota Rancher would. But we're in a different world, right? Botox is super useful for a lot of reasons beyond just appearance. If you want to get it for appearance too, and I've considered it, so I would completely understand.

So I want to find out where we are after our conversation. We started out with the association game. Troy, Botox.

Troy: Teeth grinding.

Scot: Okay. Wow. So we did change perception there.

Troy: That was my takeaway. And as we talked about it, I was grinding my teeth and I thought, "Maybe I need this."

Mitch: Oh, my. I've been struggling with this forever. I have a little mouth guard thing that I wear most nights, and I've still got sore muscles. It's like, "No duh, we have something out there that can turn those muscles off for a bit."

Scot: All right. Mitch, Botox.

Mitch: Toxin, my eyes. I don't know. What I'm thinking now is just, "Maybe I . . ." If it's for the most part relatively short term, maybe I could try it and see if it's worthwhile to have those muscles near my eye frozen. I didn't fully realize that it was kind of a temporary thing. So I don't know. I feel very different about it.

Scot: You're more open to it now?

Mitch: Oh, very much so.

Scot: All right. Very good.

Well, thank you very much, Dr. Akkina. We appreciate having you on the show.

And if you're listening, where are you about Botox after this episode? Have you ever used it for other procedures, for your appearance, or any of the conditions we talked about? And how did it work for you? Then finally, is it legit for a man to care about their appearance and want to use Botox?

If you have thoughts on any of those topics, you can email us at hello@thescoperadio.com.

Thank you for listening, and thank you for caring about men's health.
Relevant Links:

Contact: hello@thescoperadio.com
Listener Line: 601-55-SCOPE
The Scope Radio: https://thescoperadio.com
Who Cares About Men’s Health?: https://whocaresmenshealth.com
Facebook: https://www.facebook.com/whocaresmenshealth