The Truth About Prosthetic Care Nobody Wants to Talk About with Reagan Perry

In this episode of the Prosthetics & Orthotics Podcast, Reagan Perry shares her remarkable journey from years of limb-salvage surgeries to making the life-changing decision to undergo a through-knee amputation at just 23 years old. Reagan opens up about the realities of becoming an amputee, the emotional highs and lows of recovery, and why the process was far more complex than she was led to believe.

The conversation explores the often-overlooked gaps in patient education, the importance of finding clinicians who truly listen, and the challenges many amputees face when navigating prosthetic care. Reagan candidly discusses her frustrations with traditional socket prostheses, her decision to pursue osseointegration, and how the technology has transformed her daily life by allowing her to focus less on her prosthesis and more on living.

As a future physician and advocate, Reagan also shares her passion for the So Everybody Can Move initiative, which is working to expand insurance coverage for activity-specific prosthetic devices. From the role of peer support to the impact of insurance barriers, this episode offers an honest and powerful look at what life after amputation is really like, and why patients deserve more transparency, more options, and a greater voice in their care.

Whether you're a clinician, amputee, caregiver, or simply interested in the future of mobility, this episode provides valuable insights into resilience, innovation, and the realities behind the prosthetic journey.

Special thanks to Advanced 3D for sponsoring this episode.

Transcript

Welcome And Why This Show Exists

SPEAKER_00 0:01

Welcome to season 13 of the Prosthetics and Orthotics Podcast. This is where we connect with experts in the field, patients who use these devices, physical therapists, and the vendors who help bring it all together. Our mission remains the same: to share stories, tips, and insights that help improve patient outcomes. Tune in and join the conversation. We're glad you're here and hope it's the highlight of your day.

SPEAKER_01 0:25

Hello, everyone. My name is Yoris Peels, and this is another edition of the Prosthetics and Aristotletics Podcast with Brent Wright. How are you doing, Brent?

SPEAKER_02 0:32

Hey, Yoris. I'm doing well, man. Hey, we uh we added another country to another country? What's what's the new country? I don't know what country it is. I mean, we have a list of all the countries, but we're like up to 139 countries. Okay, that's awesome, dude. 139 out of 100 and what is it, 107 or something? I mean, that's not too bad. We're not gonna get all into that, but yeah. Yeah, well, it's just a really fun, uh fun thing to do, and a lot of people listen in, and it's always amazing to hear the different stories of different people that listen, even outside the orthotic and prosthetic industry. So it's always fun to fun to see. Awesome.

SPEAKER_01 1:10

And uh I agree completely. So who do we have with us today?

SPEAKER_02 1:14

All right, so we're gonna have uh a good conversation today. We have Regan Perry on, and uh she will be able to tell her story a little bit, but uh she has been a user of traditional prostheses and bone-anchored prostheses. So, you know, we're gonna be able to talk a little bit about, for lack of a better term, the evolution of that or the decisions that were made there. It's it's gonna be a really unique perspective, and I think our listeners are gonna get a lot out of it, and I think it'll be interesting to you. The other neat thing is uh Reagan just got into medical school. So she will be becoming a doctor. So we'll be able to uh dig into that a little bit. And she's also very active with a program. It's a it's a full US initiative called So Everybody Can Move. And if you don't know this, yours, but this is interesting, most people only can have one prosthesis. So, like if you want to go to the lake. Yeah, yeah. So if you want to go to the lake or go canoe or go running or whatever, you got one prosthesis. So so what they're saying, the so everybody can move is hey, you know, just like you and I have different pairs of shoes for different activities, there should be an opportunity for people that need another prosthesis to get one. And so that is one of the things that uh she's passionate about and advocating for as well. So we'll we're gonna have a lot to talk about.

SPEAKER_01 2:38

Okay, that's awesome. So uh welcome show, Regan. And uh, and uh yeah, so welcome to welcome to the our podcast.

SPEAKER_03 2:44

Thank you so much for having me.

SPEAKER_01 2:45

Uh so yeah, how did you get involved with OMP?

From Limb Salvage To Amputation

SPEAKER_03 2:47

So I had my leg amputated through the knee in January of 2024. So that was kind of my start into that world, and that came after many years of limb salvage surgeries for a non-cancerous bone tumor in my tibia. Started having surgeries for that when I was 15. And then by the time I turned 23, I I wasn't getting anywhere with it, and I was ready to, I guess, remove the source of my pain and get on with life. So I lost my leg then, started working to get a socket prosthished after that.

SPEAKER_01 3:18

So and and considering your path that it was quite a very torturous path, I would imagine, like in terms of pain, and also it it, you know, it kept going away, coming back, surgery, more surgery, that kind of thing. Um, did did it kind of feel for you kind of like a relief or a step away from this pain, or or was it kind of like a sadness that that you made this decision? Well what was that like for you?

SPEAKER_03 3:38

I would say both leading up to it, to the amputation, like I I wasn't sad. I felt confident and excited. Then obviously when you wake up from that and you look down, there's a moment where you're like, oh my gosh, I've made the biggest mistake. And it feels sad when it feels overwhelming. But then getting through that when I realized that, you know, the pain in my leg was gone and there were new opportunities ahead of me, I really haven't regretted it. And I felt like it it was the correct decision, even though there's hard moments in there. You know, overall picture, I'm I'm happy with the decision I've made.

SPEAKER_01 4:10

And and generally, like, yeah, this this time period of having this from your teenage years to to kind of like your 20s, uh, you know, supposed to be kind of a time with, I don't know, dating and having fun and that kind of thing, going to concerts or stuff like that. Was that was it a very, very difficult time for you to have it? How did you experience this and having this at that age?

SPEAKER_03 4:26

The whole way through was difficult. I guess starting at 15, you know, you get used to, you know, having some sort of disability in your life, not being able to, you know, stand up the entire length of a concert or stand up for a football game while in college. Like there's adaptations you make long before losing your leg in my case. That absolutely sucked at some times. But, you know, a lot of my friends have seen me all the way through it. So they are able to consider my abilities ahead of time, and it's not that bad. There are obviously moments where I'm like, oh my gosh, I wish I was just normal. Whatever normal is, I don't think anyone's actually normal at the end of the day. But um, you know, I'm I'm comfortable with what that is now, and you just have to be comfortable with saying, no, I can't do that, but I'll catch you later or something like that.

SPEAKER_01 5:10

And what was it like for your friends or stuff? Did because I what do you have anything to because we never really talk about like the friend group that much, but I think as a teenager, you'd be like a bit overwhelmed, I think, by this as a friend. Is there anything that you wanted from friends or where you were like, oh, Mary is really reacting to this in a way that's really positive for me, whereas Steve is like not being helpful? Like, was there anything you would want from friends if you were if if somebody is in your position that that that really was yeah, that that that really was a better way to respond to this?

SPEAKER_03 5:37

Yeah, I think a lot of maybe peripheral friends like to check in right when you have a surgery, you know, and that and they text you right when you're waking up from anesthesia and like you're not gonna remember that. And you also can't really reply right then. It's great to know people are thinking about you, but you know, for me, my close friends, my best friends obviously checked in with me then, but they kept asking because you know, a big a big surgery, whether it's the stuff I had before or an amputation, it it honestly gets harder in the months after it when you're trying to adapt to life. The hardest part is not waking up from the surgery, it's it's figuring out how to recover. So one of my best friends, Megan, I mean, sh I've known her since fourth grade and starting in high school, she would always just carry my lunch tray for me because I was on crutches. But even now, seeing me through all the amputations, you know, she considers what I need, will will walk slowly with me behind the group or just continue asking, you know, how things are going or what's bothering me currently about my leg in the situation. So that's been great, just you know, knowing people care for the long term, not just immediately after surgery when you're in the hospital.

SPEAKER_01 6:41

Okay. That that's yeah, it's a wonderful, it seems like a wonderful asset to have in your life, somebody like that, or more multiple people like Bassum is one really, really, really great.

Friends School And Redefining Normal

SPEAKER_01 6:48

Um, and uh how were you able to then get through school, like the regular, you know, the school stuff, uh doing your homework? Uh you know, was there some inner motivation you found uh or or were were you or were you just kind of like happy to be doing homework? Rather than it being like a terrible thing, you were like happy to be doing something so normal.

SPEAKER_03 7:08

It's nice to have something to do, I will say that. But I mean, it just took a a lot of people going out of their way to help me, especially in high school. Um, you know, having surgery, you'd be out for weeks at a time. I definitely had a lot of teachers around me that were willing to come in early or stay late to help me catch up or send work home with my mom. And then I mean, in college, I more so had to plan my surgeries around my school because I wasn't, you know, getting that flexibility at a large university I went to NC State is just hard. But, you know, g being able to do that in breaks and stuff, I'd I'd get bored and as long as it's like getting back into the routine of having classes and having something else to worry about in addition to surgery and physical therapy was nice. And I obviously I like school somewhat now that I'm pursuing medical school, so it's always nice to learn and kind of keep your brain active.

SPEAKER_01 7:57

Yeah, and and do you think and and was it for you when you got this amputation done? So was it was there a difference in psychological were you like before you were just like on crutches, you could kind of think of yourself as being recovering or something like this? And now did you have like a moment in your life where you're like, oh, I'm now I'm I'm I'm handicapped, or now I'm I have a disability now as opposed to dealing with the battling the sickness. Was there like a psychological break there as well, or not really?

SPEAKER_03 8:19

Definitely, because you know, it's incredibly permanent. And I guess before that I'd always maintained some sense of hope that I could be just completely normal again, like all these surgeries might actually work and I could walk without pain. Um, I knew that was probably not the case, so I was already kind of adjusting to that. But there are moments when you're like on crutches, you get your prosthetic, and you're just sitting down and you're like, oh my gosh, I really have to go through this like what seems like 10-step process to put this leg on just to walk and get a cup of water. So I I almost preferred the crutches for a long time when I had the socket prosthetic because it was just easy and quick. And I'd been on crutches for so many years at that point that I could crutch with no hands, I could carry whatever I needed to. So I almost preferred the crutches over all this long process to put on the liner and get it right and then get the leg on straight and and all this stuff. So there's a moment where you're like, I can't believe this is my life, but it's also like it's it had been my life for a long time at that point.

SPEAKER_01 9:19

You mentioned the word normal. I think that's I think now you're gonna get more perspective, and as you go older, I think you get even more. And but it when you're a teenager, that that you just want to be super normal. You want to have like maybe a better version of the one sweatshirt everyone wears because you want to totally fit in, because that's what you know what I mean? Or yeah, you know, you want to maybe uh you know, you wanna uh be to a little bit more edgier bands, but then into the same bands as everyone else. You know, the normal thing is super important at that age, right?

SPEAKER_03 9:43

Oh yes, oh yes.

SPEAKER_01 9:44

So uh yeah, so so I can only imagine that this will be that the normal thing will be a bit easier, I think. And how about becoming a doctor? Was that was that is that just what you wanted to become all along, or or was it influenced by this in a part?

SPEAKER_03 9:55

Um I was always interested in like medicine and and science growing up. I actually wanted to be a veterinarian for a long time. And then when I started having surgeries for my leg, my doctor is actually a vet and an MD, so he knows both. So just got to talk to him about all that, and he encouraged me to pick one, and I ended up veering more towards medicine.

SPEAKER_01 10:14

Okay, and and uh and looking at it because now you're you're looking at it from both sides, you're you're you're you're you're probably also now kind of more looking at this in a doctorly way, otherwise medical, but also kind of as a care provider kind of way, saying, like, what do you think of this whole process?

What Care Teams Get Wrong

SPEAKER_01 10:27

You know, the amputation to getting your your prosthetic from that whole process, what was like a bad experience or what was like a bad user experience for you, or would you have like really appreciated more of a certain guidance or training or help? Or you know, what uh uh if we're looking from like the beginning to to to to where you are now, like what were the difficult stuff where you think, hey, we could do a lot better job of delivering that care maybe more efficiently, or I don't know, maybe a video on how to put that liner on rather than some some half-baked explanation, stuff like that?

SPEAKER_03 10:54

I guess from the beginning, I felt like a lot of things in the ampute world when they're described to you, they're described in like best case scenario. And I get that in certain scenarios is that you want to be positive and you don't want to scare people. But then when you're in the thick of it, reality is is a lot less rose-colored and perfect. So, like I was told, you know, you get the amputation and then the swelling goes down and you get a prosthetic. I didn't realize you get the amputation, you wear shrinkers 24-7 for a couple like months in my case. You wait for the incision to heal, you hope you don't have phantom pain, and then you have to go through the process of getting fitted for a socket. Now, this is all stuff you can find out if you really look into it, but when it's just told to you by people in the medical world, it's it's presented as super simple. So you don't feel like, oh, I need to look into this, but so much. So from the start, the process felt way more drawn out and complicated than I was, I guess, emotionally prepared for. And then I ended up having just a lot of difficulty um with my incision healing. It it opened back up at one point, so that delayed my ability to get fitted for a prosthetic. Then I had, you know, some experiences with prosthetists that weren't super great. So I ended up going to um three different clinics. And on the third one, I've I finally found a great, you know, fit. Shout out, Brent. He uh deals with me very well. But the it just took a lot longer and I didn't realize that okay, this isn't supposed to hurt. You're not supposed to dread going to the prosthetist. Like it should be someone you feel like you can talk to and that you're comfortable saying, like, oh my gosh, I don't like this, and they're willing to kind of do whatever it takes to make you comfortable because that is what you're gonna be walking with and what you're gonna be living with. So it's super important that you get it right. Um, and then obviously with me transitioning to the osteointegration, the soft it just continued to be a really big struggle for me. And that's not the case for all people. So don't want to go into that right now when you're just asking me about about the start.

SPEAKER_01 12:50

And and and would would you think for you it would have been better to if somebody would have just maybe even a a fellow patient who's had the same procedure? Imagine you had a video of Mary who's done the same thing, but then 10 years ago, if she would have told you all the bad things, right? Would that for your personality type at that point in your life? Would that have been the thing you were really needing if she would have gone into every detail and every kind of like, I don't know, going to the bathroom is annoying. I didn't have this thing didn't heal, the pain uh persists, you know. Would that have been, I think, the the right way if somebody would have just like because you could do that. We could have done that, right? You can have someone do a two-hour video and saying, hey, this is all the bad stuff. Here you go. Would that have worked, I think?

SPEAKER_03 13:27

I mean, maybe. I also don't know. Like, part of what I've tried to do recently too is is peer support, talking to other new amputees and giving them the rundown. And I think that's important, but I feel like when something like that exists, you let people see it and it can create a lot of fear. So we need to be careful with that. But for me, I absolutely I would have preferred to someone have just shoot me straight, tell me the worst thing that can absolutely happen. So then if it happened, I wasn't like, oh my gosh, why is this happening to me? I could be like, okay, it's normal, like it's fine. Other people have gotten through it. I can certainly get through it too.

SPEAKER_01 14:00

Yeah. Yeah. For some people, I think that unique burden is like, oh wow, this is happening to me as well. Like, what have I done? You know? That's true. I think for some people, weighs a lot harder than just the maybe even the pain itself, let's say.

SPEAKER_03 14:11

It's helpful to know that the struggle is shared sometimes and that everything's not just going wrong because the universe has decided that you deserve it, that it happens to other people too.

SPEAKER_01 14:20

Yeah. So maybe uh it's just like a really maybe it's a silly idea. Maybe you could just have like a little intro of like, you know, ten different levels of like, you know, rose. It's gonna be amazing, you know? And then uh or like, oh my god, it's terrible. This is this is really terrible. And then you just pick pick a pick a journey, and then you can prepare yourself depending on what you want, right? Because that is cool. I like that, Yoris.

SPEAKER_02 14:42

Yeah, I mean it is honestly like a choose your own adventure type of thing. Yeah. When you're ready for the information, I guess.

SPEAKER_01 14:49

Yeah, yeah, exactly. And there's two three little levels, like the high level, some people just don't want to know, maybe. They want the general narrative or the practical details, right? They just get through things like, you know, they just get through things like head down, keep going, you know? And other I like to always know what I'm getting myself into, like the explanation thing. And other people maybe want to just be like, it's been it's amazing, right? And then and then just they'll get through it when they come to it, you know.

SPEAKER_02 15:13

So Reagan, you mentioned you mentioned so the like the peer support, um, that sort of thing. And then like I'd just love to hear you've got kind of the outsiders that are non-medical. You have the non then you have your medical doctors, so both primary care surgeons, and then you have the clinical side. I'd just kind of be interested in hear your perspective on the roles or what you see as the roles for each of those people that are involved in your care. Oh, and the physical therapist, because your physical therapist you're seeing, you know, very frequently as well. Um, and how that can help or hurt a journey, I guess you would say.

SPEAKER_03 15:52

I guess from the like physician standpoint, I feel like they're the ones that need to have all this information, including things that that people struggle with. I think they see a lot of that. They get people coming into the office complaining that things weren't so simple or oh my gosh, I'm struggling with phantom pain, anything like that. So the physicians, I appreciate when they're more direct, blunt, cut and dry about what the process is gonna be. From my parasites, I feel like I need like positivity and curiosity. I want to go in there and feel like they think we can figure it out and get to the a good solution for for my everyday life, whether that's just around the socket or around alignment. I mean, they need to be curious and make me feel like there are things that can be done to get me to where I want to be. And from my physical therapist, I expect like overconfidence. Like they are like, oh my gosh, we're totally gonna get you strong enough so that you don't walk with this crazy limp. Whereas, you know, my doctor, I think told me, you're probably gonna limp for the rest of your life. My physical therapist likes to say no, we don't have to accept that. We can keep working, keep working harder. So I think, you know, I appreciate the raw honesty from some people in this journey, but from others, I also appreciate like the radical positivity that almost annoys me in the moment. But I know that it's good to hear that someone at least pretends to believe that, you know, there are no limits to my functionality or no limits to what I can get out of this. So I don't know if that's really what you were asking, Brent, but that's my answer.

SPEAKER_02 17:21

Yeah, no, I think it's interesting, and I mean, I think what would I be kind of curious, like I know that and you went through multiple clinicians, but I think people need to also understand that that's okay.

Finding The Right Prosthetist Fit

SPEAKER_02 17:34

Like you will click with some people and you won't click with other people and you have to kind of go with go with that. Can you speak to some of some of that?

SPEAKER_03 17:43

I do wish that I had realized that just because you make a first appointment with someone doesn't mean you have to stick with it. It's okay to say, hmm, I don't have the best feeling about this, and I feel like I should find someone else. I guess you know, when you're a new ampute, like me and my parents just didn't realize that things could be so different from one process to another or one clinic to another. We just didn't know what to expect. So we didn't realize that maybe some of the things we were going through weren't acceptable or weren't normal at first. Like I was the first place I went to, you know, I would always want at least my mom to come with me because I just felt like kind of uncomfortable and I felt like I wasn't being listened to or wasn't wasn't getting the best support I could get. Whereas, you know, the place I'm right now, like I show up alone and I feel good and I'm I'm confident to say like hey, I don't like this, and and they work with me through it. Whereas at other places, if I was like, hey, I don't like this, I would kind of be told, well, keep trying and you might get used to it. But that can lead to a lot of issues and whether that's skin irritation with a socket that doesn't fit right, or just mental issues to like, oh my gosh, this sucks, and it's never actually gonna get better. So I try to tell new amputees or people I know that just because you start going somewhere doesn't mean you have to stay there. It's it's your health, it's your prosthetic, and ultimately that's your decision about where you want to go, and you can switch that up at any point you want to.

SPEAKER_02 19:12

I think that's one of the parts that's probably most broken about the pathway to a prosthesis is not knowing options. A lot of times, and I I always tell people if they're local, it's a whole lot better than traveling a long way for, you know, a quote unquote specialist or what have you. And it's interesting, we we've had patients on before, and they never talk about the ability of the prosthetist. And obviously that's a part, but it is always revolves around are they listening and are can we can we learn together, even if it's something that hasn't, you know, maybe that clinician has never done before. And and I always, when I talk to clinicians, I remind them about that. It's like, hey, the listening part is super important and the being able to take some of that feedback. Because I know like you and I have had some hard discussions about, you know, sockets and different styles of sockets, what worked, what provided pain. And you have to be willing to have those discussions to take the next step forward. And um, and I can see where that would be tough.

SPEAKER_03 20:14

Yeah, absolutely. You don't want to feel like you're annoying someone, but it's also the details matter and it's super serious. So, like I appreciate from you that back in the day when I was probably complaining about literally every part of my socket, I never felt like you were annoyed with me. I always felt like you were doing everything you could to make me comfortable.

SPEAKER_01 20:33

I'm actually quite shocked at this, actually, because I I can understand if you had some kind of traumatic thing and a car accident or something like that, then it's all very quick and it comes at you very quick. And but in your case, it was it was very much planned. People knew in advance, there was an appointment. You you know what I mean?

SPEAKER_03 20:48

It was like Yeah.

SPEAKER_01 20:50

And there should be for in a case like that, there should be a a really accurate understanding of the process and of how you are, because I I do think it is different than other parts of care. And but we have heard time and time again from patients that have come on here that you kind of need to be assertive and also learn to speak kind of a language with a prosthetist, and also that it is a part of is it's it depends on those clicks. To me, this this keeps coming back. And in your case, yeah, it should be quite solved because we you know you knew this was gonna happen and you knew that there was gonna be a path to this prosthesis.

SPEAKER_03 21:18

Yeah, I feel like for people, the providers in this world, at all levels in all areas of this, I guess, prosthetic world, you forget that other people are brand new to it. You know so much about your field and so much about your process that sometimes it's assumed that these basic understandings or stepping stones to get there just make sense because they make a lot of sense to you. That's what you do every day. But for the new patients coming in, a lot of times they might need not even have ever met an amputee in their life, so they literally know nothing. So it's definitely a a skill to be able to explain these steps, you know, in a very detailed way, because in your mind it's so obvious and basic that. So they should just follow along. And I don't think any of that is done with harmful intention, but I think that's just the way the world works is that when you see something every day, it becomes so basic that sometimes it's hard for you to understand that other people don't understand it like you do.

SPEAKER_01 22:15

Yeah. I think there is something that that the industry can do to to really kind of you know, I don't know, it's a video series. You know what I mean? It's it doesn't have to be difficult. If people can, you know, teach how to cook via YouTube, then they can also just prepare for this kind of thing to to at least a reasonable degree, I think, beyond beyond which there's a part that's unknowable, of course, and very, very dependent on the person, but there's also really practical stuff that I think we you know, I think everybody should really know. Um how about like now you're looking at like a lot of studying, right? I don't know how how far you are with your medical training, but that's like a lot of studying and all in that studying world, do do you do you feel that the the prosthesis you have and and and uh the the device you have and stuff, is that enough for you, or do you really kind of miss certain devices or or certain things uh uh just specifically for studying? Because we're always talking about people who are doing like uh repel down mountains and running a triathlon. Uh, but but before like the more prosaic studying stuff, there's like for example the low standing, there's other stuff. Do you think do you really feel that are the prosthesis holding you back in a certain sense?

SPEAKER_03 23:11

I don't think the prosthesis holds me back, especially not now with osteointegration, which has, you know, allowed me to walk without a socket. I think the only limitation right now is my strength. And it's just it's really hard to learn how to walk without osteointegration compared to the socket. So the the strength building and the learning curve there has been more difficult to navigate. So I feel like it's it's my muscles and my body that maybe hold me back from moving as well as I could and not the prosthetic. I feel like I have great, great setup and it will just be perfect for me as I continue to get stronger and figure out what what life is like now with OI.

Osteointegration Without A Socket

SPEAKER_02 23:52

Yours, what Reagan is talking about now, when you uh you probably jumped a little bit when you s when she said she doesn't wear a socket anymore. So I don't know if you remember it's been almost two years ago that we had somebody on with the bone-anchored prosthesis. So uh Reagan actually has the Oprah implant from Integrum, and then she uses an Axor uh piece that connects essentially, but there's like a little metal piece that connects there, and then she all you have to do is put that piece, and that's connected to a knee and a foot. And so some of the journey that Reagan has talked about is you know, not only dealing with the wound healing up around the it's called the abutment where the the metal piece comes out, it's almost like implants for your your teeth. Uh-huh. But and then you absolutely have the the muscle aspect of stuff, and how do you get that going and comfortable? And you have this piece that's inside your bone that's also healing and becoming part of your bone. And it there's just a lot that is going on um there. But what's interesting is it's it's definitely a lot faster. The alignment, it it is what it is when you when you put it on after everything's aligned by the clinician. And uh it's it's it's really a great option, especially considering all the prosthetic complications that we were having with traditional prostheses. And so that's that's what when she says she's not wearing a socket, that's what she's doing now. So it's definitely out of the traditional space into this osteointegration side of things. But I think some of the simplicity of that, even though it's overall a very complex solution, is very well suited to the life and the lifestyle that she will have as going through medical school and then obviously becoming a doctor.

SPEAKER_01 25:48

Okay, that's cool. But but uh and and and so and and Regan, why did you pick Al Sha Integration? Why was that the the the path for you? Was it more like you you know, nothing else works, let's try this, or was it like, oh, this is a superior solution for me as a patient?

SPEAKER_03 26:02

I absolutely hated the socket. I was no matter what we did, I was just never comfortable in it. The sweating, the skin irritation, the limitation it had on what clothes I could wear, having to take my pants off to get my leg off, having to carry hand sanitizer around to put it on. It was so aggravating. And I was trying to imagine my life as a physician with this, and I simply could not. I could not imagine walking around a hospital all day with this thing irritating my leg, with me having to get naked to change my pants, you know, if I'm changing from street clothes to scrubs. It just sucked. I was never happy with it. In that moment, I I was regretting the decision to, you know, have the amputation because I was like, everyone told me that this would solve my problems, but now here I am with this socket that I look at in the morning and I don't want to put on. You know, I was telling you earlier I preferred crunches because it was just so much easier. And with all the skin, you know, irritation and issues I had with the socket is when my surgeon started to talk to me about OI. Luckily, the surgeon I I had, he he already does that procedure, so it wasn't like I had to go anywhere else. They knew all about it and could start talking to me about it. And part of the decision going into OI was also it it felt superior and it just it could give me everything that I wanted to do. They don't I was never like a runner before, you know, I became an amputee. I I played sports, but it's not like I was a long distance runner. So, you know, these limitations on the implant, you know, they advise, you know, no running or no super high impact activity, that didn't matter to me. I already hadn't been super active in years. So just getting to a level of of moderate activity that the implant can provide me sounded great. Sounded like all I ever wanted. And the ability to wear whatever clothes I wanted and put it on and take it off in like two seconds. It sounded great and it is so great. I'm finally at the point where I'm wearing, you know, the leg full-time and I only use prutches to get into the shower. Um and it really makes me happy and it has changed my life so much. And there are no regrets, but same thing with becoming an amputee in general. There are things that happen, you know, as you're adjusting to the osteointegration that people don't tell you about. Like they don't put the bad stuff in the pamphlet because then people might be too scared to ever do it. But luckily, I was able to talk to some other people that have the implant and find out, you know, that the difficulties I faced, you know, at the beginning were normal. And they reassured me that that they would go away.

SPEAKER_01 28:40

And that's interesting that you say that again. Like the the but it's interesting. Did you talk to your physical therapist saying your prosthetic the time about this procedure as well? Did you ask their opinion? Yeah, absolutely. And and what was the their findings? Because were they all universally like, yeah, this is amazing, or was it kind of like he uh hemming and hawing kind of different opinions?

SPEAKER_03 28:58

I wouldn't say anyone was like, oh my gosh, this was amazing simply because none of them had ever seen it firsthand. They all had, you know, kind of neutral opinions and like this is great for some people, or or it's interesting, or make sure you think, read, you know, all the information and make sure that you're comfortable with the limitations that it may place on your life. Brent, you know, hadn't had never seen it firsthand, but he was able to refer me to an episode of this podcast with Mike. Mike, yeah. I couldn't think of his last name there for a second, where he talked about his wife's journey with it. And, you know, me and my parents listened to that and we were like, you know, it sounded like it's great and people are comfortable with it. And traditional people like Mike that were in the O and P world have have seen its value and been able to say that these precious sockets I used to make actually might not work for everyone. So it's you know, I think that kind of changed maybe Brent's mind on it too, is what he was telling me is start to realize that this is a a real solution and you know you can't have success without without the socket part of things. And then I mean my PTs had never seen it, so they were like, uh I guess we'll figure it out.

SPEAKER_01 30:09

And it's really crazy. But Brent, do you have any idea how rare this stuff is? We talked about I know you said it was kind of relatively new. To me, it sounded like the only logical thing. It's like like the T thing you said earlier, because it's like it's like dentures are the only solution, and all of a sudden somebody has a crown, essentially. It's like, yeah, okay, this sounds like a better idea. But how rare is it? Do you have any idea how rare this is?

SPEAKER_02 30:26

I d so the FDA approval was not too long ago for this particular implant. In Australia, they've been doing it for a little bit longer, but that FDA approval was pretty stringent. So I I don't know the actual numbers, but if it was if it was in the hundreds, I would believe it. If it's in the thousands, I would be surprised. Now, is it is it moving in that way? Absolutely. The surgery is um getting better and better, and the the way that you manage the the abutment where the where your skin kind of stops and the post begins, like that it's a difficult concept, but I do think that what Integram is doing is uh very very much novel and the the right way to do things, and it's inspired by the guy that actually started implants. It's second or third generation, you know. So it was the grandfather that started these implants in the mouth for the crowns, and they have now expanded on to the osteointegration side of things. So for Oh, I didn't even know that. Yeah, so Dr. Richard Branemark, which who knows? We might be able to get on sometime. That would be interesting. You're amazing. Amazing.

SPEAKER_01 31:41

Anyway, so Regan, uh a little bit to you, was uh another thing you said, I really, really think is really interesting is the clothing aspect. And we haven't talked about this yet. You're the first one to bring it up. You've brought up now twice. And is changing out clothing is really important to you? And and is it like the normalcy? Is it the ability to dress up or the ability to kind of like, you know, go from sweats into kind of something more formal to go out to a movie? Is it what was real what made this part of this so important to you?

SPEAKER_03 32:03

It was the ability to just wear anything I already had or anything I wanted to. Like I was having to buy super wide-leg pants um just to kind of fit over the socket if I wanted to wear pants instead of the shorts. I mean, my socket, you know, came up pretty high, so it wasn't like I could just crop everything because I would have been wearing like no pants. I thought it would have looked weird. So I chose wide-leg things, and I just don't really like that personal preference. I just wanted to be able to wear the more straight leg or or more fitted options that I had and not feel weird or be unable to simply get it over my socket. That was something that like clothing was really never on my mind. I knew that some people like cropped their pants, but I didn't think about how much bigger my left side was going to be with, you know, the socket on it and things like that. And I I just didn't enjoy it. It might not be a big deal for some people, but it was it was kind of a big deal for me.

SPEAKER_01 33:01

And and you did mention like some of the more negative aspects of

The Unsaid Hard Parts Of OI

SPEAKER_01 33:04

this. So so like, you know, in the interest you wanted a realistic approach. What are the reasons not to do this? You've kind of gone into this, but are there reasons where you're like, or were there things where you're like, well, if I wouldn't have known that before, I would have been much better prepared about that, that aspect of it.

SPEAKER_03 33:16

Are you talking about like reasons for osteointegration?

SPEAKER_01 33:20

Yeah, yeah, the osteointegration step. Like, like, you know, what was actually more difficult day-to-day for you and what was actually maybe a bit more scary or a bit more uncomfortable than maybe you anticipated.

SPEAKER_03 33:28

I think the main thing that scares people is is the implant life and how you know high impact activity will make an implant wear out faster. So if that's something that is super important to you, that might be enough to scare you away. For me, it was not. And then going into it, you know, I was told, you know, it's a two-part surgery. So you have stage one, you get the implant in, close it up, wait. And once it's integrated enough in your bone, you get stage two where they attach kind of the external abutment. And then as that skin, once that skin is healed around the abutment, you're able to start with weight bearing on a short prosthesis and then and then build up. You know, I was told that this process shouldn't be painful. For me, it was honestly pretty painful. Um, and I was scared that, you know, something was wrong or that the implant wasn't taking to my femur well, but x-rays show that it was doing great. And I was like, okay, well, why does it hurt? Um and I ended up connecting with one of the ambassadors for the company, and and she told me that she went through some pain at first as well. And then that made me feel better, and I was more willing to kind of push push myself when weight bearing to get my bone used to it. I have been through a lot of surgery, so I know that you know your bone needs impact on it to to grow and to strengthen around this implant. So once I was reassured that, you know, the pain was actually normal and a lot of people experienced it, I was willing to do more in PT that's that's helped me get to where I can wear it full time now. But that was super scary. Also, like I didn't realize that it was gonna ooze so much right at the end of stage two. So when they make the abutment go out through your skin, it's kind of enclosed with a skin graft, and that's you know, that takes a while to heal. And when I first took the bandage off, you know, it was oozing. And I was like, I immediately started crying. I was like, oh my gosh, it's infected, something's wrong. Like, I need to call my doctor right away. And I called him and he said, Oh, that's normal. And I was like, Well, that would have been great to know before I, you know, I'm sitting here in my home two hours away from the hospital where I had the surgery, and and I think something's wrong. So there's little things like that that you figure out along the way that that scare you because it's so new and not a lot of people have it, but it's still been great overall. And I'm so glad that I did this. And it's going it's going well now that we're actually just a little over a year out. I had stage two done in May of 2025.

SPEAKER_01 35:53

Okay. And and and is it a lot less head space? Are you like saving hours per day and managing it compared to before with the socket? Or is it just more comfortable? Is all these things what are on the is it the only advantage side, like, you know, day-to-day, what actually makes the most difference for you?

SPEAKER_03 36:08

All of these things. I don't have to think about my prosthetic. I don't have to think about like honestly, I don't think about being an amputee a lot of the times because it literally feels like one with my body. I don't feel like I have some alien clinging to my thigh that is just making me irritated and making me sweat all day. I just have something that doesn't even touch my body at all. It just clips on to this piece of metal sticking out for me and I'm on with my day. I don't think about I don't think about this hand sanitizer to get it on. I don't think about having my second liner in the car in case I get too sweaty. I don't think about anything. I just clip it on and go.

SPEAKER_01 36:44

That's a really that's really amazing. I think the idea that you don't think of it as this alien thing and that now it's like put it on and go. That's amaz that's an amazing difference psychologically, I think, I think day to day. And also just like I I get annoyed by little small things like that drive me nuts, like little irritating things. So there's this the whole idea of this whole the itchiness, it's sweaty, it's bigger, smaller, that would just really be very, very difficult for me personally to manage. I think what you're describing sounds like a really, really good scenario compared to what you had before.

SPEAKER_03 37:10

I'm very irritated by little things too. So it probably um made it even harder for me to try to adjust to a socket because I just don't like things that I don't like. You know, I'm not afraid to say that. So I probably say it a little too much.

So Everybody Can Move Advocacy

SPEAKER_01 37:24

Yeah, definitely not. Uh I have that too. So and uh now going forward, I mean you you were involved in this thing with like multiple giving people multiple prostheses. What's that all about?

SPEAKER_03 37:33

Yeah, so so everybody can move is uh it's kind of with the ampute coalition. They're pursuing state-by-state legislation to mandate insurance coverage for sport-specific prosthetics. I was super active growing up. I loved to play sports, tennis, basketball, soccer, anything active, you name it. I was doing it. And I kind of always had a hope through my surgeries and through becoming an amputee that I could get back to sport one day. And then I became an amputee and I learned that insurance only pays for one leg. And normally that leg is made for walking and made for just regular daily life and not made for sport or you know, activity like that. And I you're looking at the cost of that, you know, it can be $30,000, $50,000 anywhere up that. And I just thought that was ridiculous. And when I think about it nowadays, I I say I'm old and like back in my prime, I played sports. I'm not old, I'm 24. But I don't feel like I need to necessarily play sports again in my own life to feel fulfilled. But I think about children that become APTs. And if their parents can't afford to pay cash for, you know, a sports-specific prosthetic, they're gonna be left out of that. They're gonna be left out of feeling what it's like to be on a team. They're gonna be left out of knowing what it's like to lose sometimes. They're gonna be left out of so many things. And I just find that wrong. I think that, you know, when you tear an ACL, your insurance pays for all the physical therapy or all the equipment you need to return to your prior activity level. So if you're an athlete, great, they will help you get back to being an athlete. But if you are an athlete and then you become an amputee, they say walking is good enough for you. Um, and I guess I I think that's wrong. So me and my dad have been working in in North Carolina up in Raleigh to pursue legislation that would mandate coverage for this so that everyone can have access to movement and access to sport. And I think the main tagline that they use is movement is medicine. Encouraging people to live active, healthy lives is better for the healthcare world as a whole and and better for people as a whole.

SPEAKER_01 39:28

Yeah, it sounds like a really a great initiative. And another thing is like I noticed for myself, like if I uh if I don't take time to to to do sports and to go walk and to do stuff, I I kind of I gain weight and I uh and it's not great. So is that also a problem, Brent, for people with prosthetics generally? Is that is that the the sport thing may actually be extra important uh if you're not going out there and moving? Absolutely.

SPEAKER_02 39:49

I mean, one of the things that's so important about having a prosthesis is being able to get up, be upright. We're made to be upright. Your organs just work better that way as well. Having a comfortable prosthesis is super important. Having something that you can be active on beyond just a normal walking is also very important. So I think it's a I think it's a great move. And I've been on those calls. I had a patient, we've actually had him on the show, where they I mean, literally a Paralympic athlete, and they're telling me that walking is good enough. And it's unbelievable to have a doctor say something like that that is I I mean, it's it's inhumane, really. It is unbelievable. We finally got it covered. It took some time, but it's just that's the that's the attitude behind it. And people don't take, you know, and you mentioned, you know, gaining weight, but there's also the mental aspect, uh mental health aspect of being up and around and doing things that are active. It just makes you feel better about yourself. And so when you don't have that, it can definitely spiral into even more medical things and potentially be more expensive. And that's the part that these insurance companies really don't get. It's is potentially even cheaper for them, right?

SPEAKER_01 41:03

There's no more diabetes stuff, there's no all sorts of other uh new processes and all this other crazy stuff that they could uh have for the patient as well. So it could actually save them money. Correct. And we do do you have do you have a sports process now? Are you able to get one for yourself or or are you still still looking to get one for yourself?

SPEAKER_03 41:20

I don't right now, but all the activity I do right now, I don't think I personally need anything special at this moment. I mean, I also have a great, great setup. I have the the X knee, a great foot with some ankle mobility. So I'm sure if if I wanted to do something a little more active, I I could. But right now I'm really just into cycling and I don't need anything special to do that.

SPEAKER_01 41:45

Well, that's good. I'm I'm glad you could do that with that. I'm glad that actually works. I did not know that. And how about like Brent Brent is is uh insur insurance companies are not Brent's favorite thing in the world. Let's put it that way. Um, how about you as a patient?

Insurance Appeals And Future Doctor Life

SPEAKER_01 41:58

How about you mentioned the insurance aspect a little bit? How was that that journey for you as a patient, the paperwork and and all that kind of stuff? What was that like?

SPEAKER_03 42:06

I feel like if I didn't have parents that really understood the healthcare system or providers that were willing to go the extra mile to argue on my behalf that I I wouldn't have the things that I have today. I feel like insurance main tactic is to say no so many times in the hopes that you give up. And I think that's really unfortunate. And I think it's unfortunate for people that don't realize that they can appeal or that they can argue with them or they can be annoying right back to them as well. Um, you know, they're they're really shut out of this world and feel like they can't get the things that they need to be successful in their life. So I, you know, agree with Brent and probably a large amount of the public that the insurance system, it sucks. Um, and you need to be willing to spend a lot of time arguing with them to stand up for yourself.

SPEAKER_01 42:53

Yeah, I th I think that's a really sad side of fair to think. And I could just imagine someone who has uh less means or or is just less assertive or like you said, doesn't know that you could you you could be assertive in this process or you can appeal, would would just have a uh a a lower standard of care, uh which may even be like the idea, right? It may even be what they're trying to get. Is that actually quite horrible? And one thing I uh I think you you mentioned before is is um is you were visualizing yourself with the socket, you couldn't visualize yourself as a as a doctor with that so with the socket. How about now if you if you if you're now in the situation you are now and you're trying to visualize yourself as whatever type of doctor you would like to become, how is that going in your head? Is that kind of like really seamless in your head as well?

SPEAKER_03 43:32

See myself doing absolutely anything a doctor does that you think of except for like running up the stairs in an emergency. I can't do that quite yet. But you know, standing, standing all day or or walking around, you know, I've had the opportunity to to shadow some recently and and like I can keep up with that. Um I it may look a little different. I use a cane now still, but I'm doing it and it feels great, and I don't feel like I'm different or require a lot of special like accommodations to keep up. And that was a big thing for me too, is that you know, accommodations are great, they exist for a reason, but sometimes I would feel uncomfortable asking for those for myself. So I just wanted to be. We're going back to this. I wanted to feel normal and I feel more normal now again, except if they were to be like, oh my gosh, we have to run up three flights of stairs to get to this floor of the hospital. I'll take the elevator and catch y'all there in a second, would would kind of be what I have to do there.

SPEAKER_01 44:25

Well, that's also like an amazing like kind of result or a result in in the making, I guess. And uh thank you so much

Final Takeaways And Thanks

SPEAKER_01 44:31

for being here today. It was a really wonderful story for you to hear uh about the uh about uh your life uh so far and and uh how you've uh intersected with the OMP world. And uh yeah, really great. Thank you so much for being here today.

SPEAKER_03 44:41

Yeah, thank you so much.

SPEAKER_01 44:42

And uh Brent, thank you for for for being here as well, of course.

SPEAKER_02 44:44

Yeah, well, I think this is great. I think it's great information for everybody in the ONP field and then from the patient side of things. And then uh also for those people that uh well, they probably don't listen to us, but in the insurance industry, maybe they will.

SPEAKER_01 44:59

Who knows? Anyway, thank you for listening to another episode of the Prosthetics and Orthodox Podcast. Have a great day.