EDS Foot and Ankle issues with Dr. Patrick Agnew (Ep 162)

Transcripts are auto-generated and may contain errors

Dr. Patrick Agnew: [00:00:00] Those are some of the consequences of midfoot adoption. I think the biggest mistake is for someone who sees this in an infant to say, don't worry about it. Most kids outgrow it.

Dr. Linda Bluestein: Welcome back every bendy body to the Bendy Bodies podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility md. I am so excited today to talk to Dr. Agnew about feet and ankles. I have had so many problems with my feet throughout the years, so I really think this is going to be a very interesting conversation for all of us.

But selfishly for me. Dr. Agnew is a board certified foot and ankle surgeon, also trained in microvascular surgery. He is a past president and current board member of the American College of Foot and Ankle Pediatrics and is a fellow of the American College of [00:01:00] Foot and Ankle Surgeons. I know that so many of you have foot and ankle problems.

I see this in my patients and in my clients, so this is going to be a very important conversation. As always, this information is for educational purposes only, and it's not a substitute for personalized medical advice. Be sure to stick around until the very end, so don't miss any of our special hypermobility hacks.

Here we go.

Well, I am so excited to be here with Dr. Agnew. Um, how are you doing today? 

Dr. Patrick Agnew: I'm well, thanks for asking. How are you? 

Dr. Linda Bluestein: I'm good. I'm good. Really excited to chat with you about feet and ankles because we know that this is an area that a lot of people with connective tissue disorders really, really struggle with.

Dr. Patrick Agnew: Pretty much everyone I meet. Yeah. 

Dr. Linda Bluestein: Okay. I bet. I bet. So, so let's just start with how do connective tissue disorders like the Ehlers-Danlos Syndrome, Marfan Syndrome, Louis Diets, et cetera, how do they affect the feet and ankles differently than the general population? 

Dr. Patrick Agnew: You know, it's not, [00:02:00] uh, exactly the way I thought initially.

So I've been meeting people with connective tissue disorders for well over 30 years now. The second annual national meeting of the old Aler S National Foundation was here in Chesapeake, Virginia, adjacent to Virginia Beach, and I had been in practice for about five minutes, so I didn't have anything to do.

I went and sat in the back of the room. A buddy of mine, a hand surgeon, Dr. Patino, was the head of the medical advisory board for that organization at the time. And he came up partway through the meeting and he said, are you interested in this? And I said, yeah, I heard about it in med school. I thought it would be probably affect people's feet.

And he said, yeah, they're all complaining about foot problems. And there was a total of maybe 20, 30 people at that meeting. So, uh, everyone I talked to, they had different foot and ankle complaints and, um, started kind of keeping track of [00:03:00] that and studying it for the next three decades or so, four decades almost.

Um, they, uh, the effect I thought would be over pronation, where feet just flatten out more than they're supposed to. And this is something that. Uh, is very commonly noticed in podiatry offices and orthopedic foot and ankle surgeon's offices. And, uh, although they call it progressive collapsing foot deformity, 'cause they don't wanna admit that flat feet hurt.

They, they do sometimes and have been at least, uh, associated with things like bunions, hammer toes, plantar fasciitis, premature arthritis. At the same time, a lot of children are born with flat feet. Maybe outgrow them, maybe don't, uh, don't necessarily seem symptomatic. You go all the way up into like military recruits.

And there was a study done in Canada on military recruits way back, [00:04:00] uh, that showed that, uh, that a lot of 'em had flat feet. As long as they weren't stiff or they didn't have Aquinas, they could still, uh. Perform military duty. This was after World War ii. During World War ii, people were mostly discharged or, or denied the opportunity to serve if they have flat feet.

Oh, wow. So, but then their flat feet, men, their flat feet. So it turns out that people with Aler Delo Syndrome probably have a pretty similar mixture of flat feet, maybe a third of the population, what we might call normal feet in the middle. And then maybe 10% have higher arch feet, often associated with neurologic diseases.

Um, not always, but certainly often. And, uh. There are no real strict parameters on what constitutes a flat foot versus a normal foot versus too high of an arch foot. It's kind of a gestalt thing. Um, too [00:05:00] much so I wish it was more scientific, but it really isn't. But, uh, there, there is a higher in system of things like club feet, metatarsus, ab ductus, calcaneal valve valgus, actual deformities in people with EDS or other connective tissue disorders.

A lot of this is presumably more of a packaging defect instead of a manufacturing defect. So a person might have had a normal foot, but because their ligaments are not protecting their, their plastic multiple bones in utero, they can get kind of squished and get various, uh, positional deformities that they're born with, um, that aren't necessarily malformations, but they may be deformations and therefore maybe let in some cases more mild.

In other cases, maybe even more severe. Uh, but the, um, the flat or the, the thing that happens I think in the connective disorders is regardless, is if you have too high of an arch, too low of an [00:06:00] arch, an average arch, when you stand on it, it sags. The ligaments that are supposed to help hold the arch up are just too stretchy.

So joints book open at the bottom, pinch at the top, uh, sometimes they compensate by over pronating or, uh, or tipping over the other way completely. Um, and twisting ankles and things like that. So that's one way in which connective dis tissue disorders seem to affect the foot and ankle. Uh, unstable ankles.

People just roll in their ankle tripping over air. You know, they don't even necessarily have to step on an acorn or anything. And every time you twist your ankle, you stretch these ligaments further. And you can damage cartilage. The talus can bump into the tibia and chip off little pieces of cartilage called osteochondral defects.

Um, and the odd thing is you go and take an x-ray, everything looks fine. [00:07:00] You take an MRI, it might show that the defects, it might not. It might even say the ligaments are normal, because unless they're acutely inflamed, an MRI's not gonna light up. So it might look like a normal ligament, but it might be bubble gum, just real stretchy and, and not really holding the ankle together.

Um, other areas of the foot that tend to seem to get hurt with, uh, connective tissue disorders are like the sinus tarsis. So you have this little hole in your foot called the sinus tarsis, and it's got a little plug in it called hoax tonsils. So you have tonsils and sinuses in your feet. Most people don't know that, but, um, that, that little tonsil has a, a tiny nerve in it that can get pitched between the tails and the calcaneus as it pronate, and that can cause pain in that area.

Uh, the thing that surprised me most probably was the relatively high incidence of symptoms like plantar fasciitis, pain at the [00:08:00] heel, particularly when rising from rest. I didn't think people with connective tissue disorders would have this, because I figured it was stretchy and it wouldn't tear like it does in the general population.

But, and, and that's what we think happens in plantar fasciitis. The, the term plantar fasciitis is, uh, nomenclature. It's wrong. It's not really an itis, it's an osis. So if you biopsy the plantar fascia, it doesn't have inflammatory humors. It just has little tears and, and stretches in it. So it should be called plantar fass.

So this torn ligament wants to heal every night you go to bed, it's down like that. It's trying to knit. Every morning you step on it, you rip it open again. So it's chronic, repetitive injury is really what happens. And I thought people with connective tissue disorders might be kind of protected from it, but they're not.

They, they do seem to, to have a high incidence of heel pain. Um, so those are the common things. Also, secondary [00:09:00] deformities. If your foot sags all the time or over pronate, you might be more prone to bunions and hammer toes. So these seem to be very common and they're often particularly challenging types of toe deformities that don't necessarily respond to standard treatments.

So you may hear, you may see on your. Social media feed a, a certain particular brand name, a bunion operation, um, a type of marketing that I kind of find repulsive, but, but it's out there. Um, and it recommends fusion of the, of the first metatarsal to the medial Cana formm at the base. An old procedure called a lapidus been around for decades, many, many decades.

There's just some new technologies on how to do it that may or may not be actually superior to just bolting it together. The problem is if you have hypermobile joints everywhere. You fuse [00:10:00] one joint, the other joints tend to get irritated. So there may be good cause for this in other parts of the body.

Like I understand spinal fusions can have very good success rates in people with connective tissue disorders, although sometimes if you fuse one, you gotta fuse the next and the next and the next. I'm not a spine surgeon, but it sure seems that way. Yeah. Um, if you, if you, yeah, I'm right. Okay. I thought I was probably right about that.

You're, you're, no, 

Dr. Linda Bluestein: you're right. I mean, it's not always the case, but fusions are definitely, you have to very, very carefully think through if this is the right thing. I mean, sometimes it's necessary, right? But, uh, definitely that's a downstream consequence quite often. 

Dr. Patrick Agnew: Sometimes necessary in the foot too.

But if we can extend limit motion as opposed to eliminating motion, uh, that might be a better way to go. And if you could do that with a good shoe or a good shoe with an orthotic. Or even an a FO, you know, a more, uh, higher up orthotic. Those might be very reasonable [00:11:00] things to try. But when those things fail, uh, which seems to be a lot people, uh, with connected tissue disorders are sometimes kind of Houdini.

They can wiggle out of orthoses sit, are supposed to hold'em together, um, in, uh, those, those folks sometimes do need, uh, limiting motion in, in the joints. And that's what I've kind of worked on a lot is try to try to come up with ways in which to limit motion without eliminating it in order to improve function.

So of, uh, kind of invented, uh, one procedure where we replaced the ligaments of the first metatarsal phlange joint using tiny bone anchors that we kind of stole from the ankle and hand surgeons. And that seems to work quite well. I've been doing that for over 10 years, published a lot of, uh. Posters on it.

I've spoken about it at a lot of meetings. We don't have a, uh, a powered, controlled study at this time because we for a long time have been playing around with the right anchors. [00:12:00] Also, people with connected tissue disorders are not the best research cohort. Uh, it's such a spectrum that it's, it's very hard to really pigeonhole people into, uh, uh, into whether they meet criteria for research or not.

Plus, nobody really wants to be in the control group. Everybody wants to like, get better, so they want me to actually do the procedure. So we've been doing the procedures and generally very, very good results. Um, and minimally invasive things, things also that you can usually, you know, so small incisions.

Also things that you can often step on immediately, like that construct on the first toe. It's strong the minute I do it. You don't have to wait for bones to heal or fuse. And so. This is, I think, very beneficial in people who might dislocate their shoulder trying to use crutches or a walker, right? Yep. So I think that's a, a valuable part of the, the treatment.

Um, and we [00:13:00] often do like several things together. We'll straighten the big toe, reinforce the ligaments of the ankles. Similarly with bone anchors and suture material, we might put a little stent into that sinus tarsis to fight some of that sagging over pronation thing. Yeah, it's kind of our blue plate special for connective tissue disorder.

You get, you get all those things done at once. You can step on it that day to a certain degree. Uh, you get a total of about five stitches. Um, pretty, pretty cool stuff. So I feel really fortunate that I have this very limited part of these disorders to try to help with because I am overwhelmed by the.

Complexity and, and extent with which these things affect people. One of the old directors of the, uh, EDNF medical advisors panel before the Aler Dental Society kind of, it kind of morphed into that, I guess, which is more [00:14:00] international, um, which I, uh, said that, you know, every cell in your body's connected to the next cell by connective tissue.

So if any, and all systems have connective tissues, so any system in the body can malfunction when the connective tissue's not working right. So in order to help people with connective tissue disorders, you just have to know everything about everything. I said, well, I can't do that. You know, I'm, I'm a carpenter, maybe a cabinet maker on a good day.

So I, um, I can put together little joints and things and make hinges swing properly and I can make a really pretty cabinet. But, um. I, I do try to understand things like mast cell activation in pots and dysautonomia and I, I, I do preach to my residents and when I give lectures on this to be aware of all these things, be aware that your local anesthetic might not [00:15:00] work.

You know, tell the anesthesiology not to pull too hard on their head. It might fall off, you know, you gotta be careful taking care of people with connective tissue disorders. You need to be aware of the potential for complexities. I had one patient, we had a very good outcome on her foot surgery, and then in the postoperative recovery, her shoulder fell outta socket.

So I called up my orthopedic buddy and I said, Hey, can you put a socket back in for me? And he said, what the hell did you do? You're working on her foot. Her shoulder came out, so it wasn't me, dude. It was the, uh, it's a disease. It's, it's a disorder. But yeah, I'm just constantly fascinated and very impressed.

With how people with connective tissue disorders as a whole, I'm stereotyping of course, but really seem to, um, teamwork. Uh, there's a lot of communication between patients and doctors who will listen. [00:16:00] And I think almost everything I've learned about connective tissue disorders, I've learned from a bunch of different sources all at once.

I have like three patients sit in a row, show 'em one week and say, Hey, I got this thing called pots. I'm like, what's pots? I had to go look that up and, and figure out how that works or, uh, uh, well, some things I guess were better defined earlier, like pectus and Chiari Malformation. Um, so I'm aware of those things and, and try to help people get to proper, uh, diagnosis of treatment for them.

We do have a new Aler Danlos, uh, center, theoretically opening it to the University of Virginia, which is a couple of hours from here. I'm very excited about that. I've already talked with the podiatrist that works at the university to see if I can have a [00:17:00] network with that. I, I still send a lot of people all the way out to Indianapolis to see Dr.

Frank Romano. Uh, I think she's backed up about like five years or something. She's so amazing and smart and, uh, uh, so the whole networking thing is, is a constant effort to try to get access to various resources to try to help people. You know, just finding a local pops doctor or rheumatologist that will believe me when I tell 'em someone has something is not always easy.

Dr. Linda Bluestein: No, no, it's definitely not. And that's the, the whole networking thing is, is also really challenging because, um, I'm sure like Dr. Frank Amano, I have patients that come to me from all over the world and also have a really, really long wait list. So, uh, you know, if somebody is local, then I know where to send them because I know the local resources.

But if they've come from, you know, Germany or Greece or something, or even even a different part of the us, it's a lot [00:18:00] harder. 'cause I don't know what the resources are that they would've access to. Another thing that I wanted to, to mention was my, my first ankle surgery was for, uh, sinus tarsi abutment syndrome is what they uhhuh called it at that time, Uhhuh.

And I was like 17 years old and I was having terrible ankle pain. And that was the first of 1, 2, 3, 5 surgeries on this Right foot and ankle. Um, oh gosh. Is that, is that what you're referring to when you're talking about the sinus? Um, in the ankle? 

Dr. Patrick Agnew: Yes, ma'am. That's exactly what I was talking about. You and, uh, I'm so sorry to hear that you had to have five surgeries.

Happily. It's usually just one, uh, when we put a little, not all for that though. Not all for that. Yeah. Yeah. Oh, okay. Gotcha. Um, but, uh, there are, uh, we, we often put a little stent in there. Now a stent, of course, is something that goes into a space in the body that already exists as opposed to an implant where you [00:19:00] have to create a place to put the, the thing in.

And these stents look like little bullets. Um, there, there may be there anywhere from six to 10 millimeters at the base and anywhere from four or five millimeters all the way down to about two millimeters at the tip. And they're, some of them are just cylindrical. Some of them are kind of like a pumpkin seed shape.

Uh, or a cone. Um, and they're trying, uh, different manufacturers are trying to come up with more and more anatomically uh, well-fitted ones. But fact is everybody's sinus tarsis can be a little bit different. And so where a particular stent might work for a particular patient, might need a different one for a different patient, and you really don't know until after you put it in.

But, uh, generally they're very well received. I'm gonna say better than 90% of the people we put 'em in are, are happy that they have 'em and they're comfortable. Occasionally as someone [00:20:00] grows, we might have to take it out, put a bigger one in, um, and occasionally the one we choose to put in initially just isn't comfortable and we, we try a different one.

Um, but the, that is a nice, gentle way of stabilizing that subtalar joint, stopping that. Calcan from banging into one another and pinching hoax, tonsils. And, uh, you and you, again, you can put a little bit of weight on it immediately, uh, which is nice. You know, you're supposed to kind of stay off of it for three to six weeks, and it might take three months before a particular individual is completely comfortable with the change.

Having this new thing in a spot that maybe it didn't even hurt before, you know, if they had, uh, plantar fasciitis, bunions hammer toes, I might wanna put one of those in to keep those things from coming back after I go to all the trouble fixing them. And, and I [00:21:00] also, uh, might wanna just make them have less fatigue at the end of the day.

Maybe able to walk a little bit further and I can do it through the same incision where I do the ankle ligament reconstruction. So that's kind of cool. Um, you do it all with one little incision. Uh, but. The, um, it does change the way someone walks a little bit for the better, but that can take a little getting used to for a few months.

So that, I don't, I don't know what they did to your sinus tarsus initially. Um, or if you had to have it rerated. 

Dr. Linda Bluestein: I don't think there was a stent. Yeah, they did, they did reoperate on that. And then I've also had, um, some other procedures, but, but I don't think I had a stent, but this was in the early eighties, so would that make sense?

Dr. Patrick Agnew: Well, I hope they didn't have to fuse your subtalar joint. I think that No, 

Dr. Linda Bluestein: no, I don't think so. 

Dr. Patrick Agnew: That can be a pretty horrible operation. I mean, it's a, a joint that's not that difficult to fuse. The calcaneus is just, or the tail is just sitting right on top of the calcaneus. It's pretty [00:22:00] easy to bolt it together so it won't move any longer.

But when you eliminate that subtalar joint, you really take away one of the most complicated and, and important parts of foot function. You know, I have this slide in my slide deck that has, uh. Uh, Michelangelo's, uh, Sistine Chapel painting where the God is pointing to David's finger, right? To bring life to him.

Well, mine has a foot there instead of a finger. And, uh, and the, the point of it is that the thing that makes you actually human in a lot of ways is your sub joint, your foot. Um, there aren't that many primates that can spend any time on, on two limbs. Most of 'em have to kind of amble around with hands and feet.

You know, we, we all have thumbs, all the primates do, so that's no big deal. You know, we we're very proud of our thumbs 'cause we can eat Doritos with 'em, but, [00:23:00] but really it's not that big a deal. They have tails that can do what our thumbs can do. We, we're very proud of our brains. And our brains are pretty big, but they're citations, you know, like dolphins and whales that have way bigger brains than we do and, and maybe are smarter.

They have a pretty cool lifestyle. They, they get to surf every day. I only get to surf when the waves, when a hurricane goes by Virginia. Um, the, um, but the thing that makes you really special is your sub Taylor joint. It's what we call a pronating mobile adapter. So at one point in gate, your foot is like a bag of bones that can wrap around a clump of sand and be comfortable.

Your whole foot can be in contact with that gravel or sand or snow and then. All the bones kind of lock back together into this lever that can push you up a flight of stairs or up a berm. And that's super cool that it can go through all those changes in a, in a second, in a, in a fraction of a [00:24:00] second during each step you take.

And if you eliminate that ability, you create almost a peg leg. It's, it's like, it might as well be a prosthesis in some ways that stiff foot just, and it, and sometimes it's genetically stiff. You can have, um, uh, tarsal coalitions where the bones in the foot don't divide up in utero or shortly after birth like they're supposed to.

And they stay stuck together and stiff. And that's a, a really bad foot to have. Um, I can take them apart, but they, but they don't, they still don't work exactly like they're supposed to. So having that ability to pronate when you're supposed to and supinate when you're supposed to, is very valuable. And if that's taken away surgically.

There can be consequences, like further instability of the ankle, instability of the knee. Uh, and this is a thing that we've noticed, like in some cases, let's say a big toe joint's really misbehaving and someone decides to fuse it, [00:25:00] that'll take care of that problem. But then in the middle of the foot, those joints will have to do extra stuff and then they can become diseased.

Or if that joint is fused in order to, to fix, uh, a deformity of the first ray, then maybe the next thing is the mid midtarsal joint or the sub Taylor joints starts to dysfunction. And even sometimes when I limit motion of them, I've still had patients in whom other joints begin to dysfunction with just limited motion.

So we'll put a stent in the sub Taylor joint. Foot starts to feel a lot better, but then the tibia and fibula can kind of start stretching apart. A diastasis that's called, and the interosseous ligament that's supposed to hold those two bones together can get kind of stretched outta shape. So on occasion, we have to kind of bolt that together with a couple of buttons in a string.

Um. And I, I can, I suppose, keep going up higher and higher until it gets, [00:26:00] gets to your teeth or something. But I understand temporomandibular joint's pretty common. I don't think I cause it usually, but it's uh, 

Dr. Linda Bluestein: yeah. Yeah. That it is a common problem for sure. And, and you know, that's really interesting what you were saying about, about feet and how that's something that makes us very unique because I do think about, you know, like the other things you mentioned, like the brain and the thumbs and you know, we're kind of told those things, but, but feet are so much more complicated than I think most people realize and do so many important things.

And so many people have ankle instability. They've had multiple ankle sprain. And you mentioned already kind of tightening up the ankles. And I see in my clinic all the time, I see a lot of pronation, I see a lot of flat feet. Um, is that something that for, for recurrent ankle sprains, like how does a person know if that's something that needs to be addressed surgically or not?

Dr. Patrick Agnew: Yeah. Um, well, I think ankle sprains need to be taken very seriously. They are the [00:27:00] most, uh, common injury in America. Um, they're about 10% and just a general population go onto some long-term disability. So it's a serious injury to start with. You know, we all think of it as well, e everybody's probably sprained their ankle at some point, but if you're spraining it repeatedly, every time you do that, you're further damaging the ligaments, possibly damaging the cartilage.

And at very least you need maybe some physical therapy. One of the most common problems with ankle sprains is repetitive strain sprains, probably in some part 'cause you've also stretched the nerves. And by stretching those nerves, you can temporarily at least lose some proprioceptive sense, can some kinesiological sense of where your foot is in space.

So you might be more inclined to sprain it again. Uh, so. Some at least self-directed or, or, or formally uh, uh, applied physical therapy may reduce the [00:28:00] risk of repeated sprains. Bracing can be a good idea for a lot of people. Um, particularly if you might enjoy activities that are on uneven surfaces. Sports, recreational, walking, hiking.

Uh, there are a lot of braces that can help, but as I said, uh, you know, the Houdini flexi people can sometimes just like pull right out of a bracelet without even undoing it. Uh, and so, which is by the way, how Houdini did a lot of his tricks. He, he, I think he was probably hypermobile. He could, he could get outta handcuffs and things, or a, a RAI jacket.

Um, but I think if those things have been tried and sprains are still occurring, that surgery is indicated, uh, it's a very low risk, high yield procedure that, uh. Can save a person from premature arthritis and chronic pain. So a, a big advocate of reconstructing ankle ligaments. [00:29:00] Now lemme back up a step on that.

When I first met people with connective tissue disorders, I said, oh, I'm never gonna operate on these folks. This seems like a terrible idea. You know, the skin might not heal that they might, you know, I might not be able to stop bleeding of an artery or something. It terrified me. But after learning more about it, uh, I've found out that pretty much just like everybody, sometimes a little operation early on, 'cause they have a bigger operation later.

And so some of these small, minimally invasive procedures that we've pioneered, uh, I think are, uh, are worth exploring early on. And like you, we've had people come from all around the world for this. We actually are pretty well set up, uh, at our medical school. We have a, actually a little hotel inside the HO Hospital, the main teaching hospital.

They call the, the guest quarters. They took some old hospital rooms and made 'em into a hotel. So [00:30:00] family can stay for a weekend, come in on a Friday, I do my thing. They might stay overnight as an observation patient so we can manage pain and such. And then, uh, stay in the guest quarter, Saturday, Sunday, see me Monday, go back to Hawaii or wherever they came from.

And, uh, that, that's been a, a fairly reproducible pattern. Doesn't always work. Have a, a patient that, uh, went back to Indianapolis with some complications, but happily I had, uh, trusted colleagues there that could help manage those. Um, so that's a pattern that, uh, uh, I could offer to pretty much anybody in the world.

Dr. Linda Bluestein: That's good. That's good to know that they can, uh, come out and potentially stay there for less expensive and more seamless than if they were to go to a regular hotel and have maybe a little more difficulty with access if there was some kind of a problem or complication or something and, and then basically you clear them to leave town and [00:31:00] obviously you don't know for sure exactly what the future's gonna look like, but you see them again before they leave to make sure that they're doing, they're doing okay.

Dr. Patrick Agnew: Then I cross my fingers and, and I hope everything goes well. We talk about all the things to watch out for postoperatively because there is maybe a slightly higher incidence of deep vein thrombo, phlebitis, I think in people with connected disorders. I don't know this has ever been documented anywhere, but there's some logic in it.

If there are this elasticity in the veins, a tendency to pool. Maybe part of what causes pots, for example, uh, that might cause a sluggish venous return and a higher risk for things like blood clots after surgery. So we talk about that. We know that, uh, it can affect the co the, um, immune system. You know, the immune system is made by connective tissues, so the immune system doesn't always work right.

And as you are aware, I know, uh, [00:32:00] there are antibody deficiencies and things that can occur. So, uh, postoperative infection rate may be higher than average. We've seen it very rarely, but it's not unheard of. Um, pain control is not easy. Um.

Poor responses to some traditional approaches to pain. Uh, and then there is the, uh, the whole dilemma of getting, uh, local anesthesia to work. I can do pretty much everything I do with local anesthesia and a little intravenous sedation, but, and some people with connective tissue disorders, local anesthetics just don't seem to work very well.

Now we've tackled that problem. First off, I, I don't even know why it's that way in my mind, it's always been that your skin is connected. Your, your superficial fascia is connected to deep [00:33:00] fascia by little ligaments called Langer's anchors. And when you inject a local anesthetic in there, if those anchors are too stretchy, it maybe just, just disperses.

It doesn't stay where it's supposed to be. So we've used local anesthetics mixed with things that help keep 'em in place. Epinephrine, uh, in, in cases where we can, you might not be to use that on a toe, might make the circulation stop toe falls off. That kind of solves the hammer toe problem. But it's not cool, you know, um, not, not what we want.

Um, we have seen, uh, drugs mixed with, uh, uh, other connect like, um, Barilla, I knows a brand name of a local aesthetic mix with kind of a latex kind of thing that stays, stays in place. Well, um. Uh, it's, uh, a colloid, uh, sub suspension type thing. Lately we've been making up our own, uh, local anesthetic [00:34:00] cocktail at the hospital we call rec.

It's got ropivacaine, epinephrine, clonidine and ketorolac. So you're attacking pain in four from four different pathways. You got the local anesthetic epinephrine to keep it where it's supposed to be, clonidine to make the nerves happier and more mood stabilized. And, uh, ketorolac as a, an a powerful anti-inflammatory.

And we frequently use that in at least the rear foot part of our procedures. In the forefoot parts. Sometimes we just use the ropivacaine and clonidine. Um, so we're working on it trying to figure out the best way to keep people comfortable. 

Dr. Linda Bluestein: Well that's, uh, that's very interesting. Yeah. 'cause it definitely, people are.

I think very aware of the problems with local anesthesia when it comes to dental work and things like that. But yes, in your field, very, very important. We used to, as an anesthesiologist, you know, I used to do blocks for people that were having various different foot [00:35:00] surgeries, you know, peroneal blocks or, or whatever.

And so, uh, at that time when I was working as an anesthesiologist in the or, I was not aware of the problems that people with EDS had with local anesthetics. Not everyone, of course, but a lot of people do have that problem where they need either more or they need a longer time for it to set up, or they need to be re dosed more frequently.

So it's, it's good that you're very aware of that. And hopefully there's other podiatrists, they're gonna be listening to this and we'll say, oh, that sounds like a really good cocktail. Maybe I'll try that too. Um, we're gonna take a quick break and when we come back I want to talk about, uh, if your feet and ankles need to hurt in order for you to have problems or if you can have problems, even if they don't hurt, and what to do about that and how to approach it.

So we're gonna take a quick break and we'll be right back.

I am super excited to tell you about the Bendy Bodies boutique. I am so proud of our fierce styles and flexible designs. These are created by Hypermobile artists. For Hypermobile shoppers, there are so many fun [00:36:00] items from clothing, accessories, home goods, and my favorite are the bags. I especially love the weak Weekender tote with one of the EDS tough designs.

Whether you're shopping for yourself or someone you love, there's so many options to choose from. A portion of the proceeds goes to support EDS nonprofit organizations. For more information, please visit bendy bodies boutique.com. Thank you so much for listening to Bendy Bodies. We really appreciate your support.

It really helps the podcast when you like, subscribe and comment on YouTube and follow rate and review on all audio platforms. This helps us reach so many more people and spread the information to everyone. Thank you so much again, and enjoy the rest of the episode.

Okay, so we're back with Dr. Agnew, and one of the questions that I had was if your feet or ankles need to hurt in order for you to have problems, or are there times where maybe you should be even more proactive? 'cause you were talking about, you know, it's hard. A lot of times we, [00:37:00] we think yes, like, exactly like you said, like maybe the healing's not gonna be good as good or we're not addressing the primary problem.

So maybe sometimes we do put off surgeries longer than we should, but of course doing the surgery at the right time is critically important 'cause we know that there are potential complications and downstream things like we've talked about with fusion, for example. So do your feet or ankles need to hurt or should we be thinking ahead?

Dr. Patrick Agnew: I think that's a brilliant question. You know, my, my other kind of specialty areas, I'm on the board of directors of the, uh, American College of Foot and Ankle Pediatrics. Um. Uh, there are now two. One of my former residents just got privileges. So now only two podiatrists we have on staff at our local children's hospital.

Me and one of my former residents, Dr. Bruno. Um, and that was kind of a pioneering thing several decades ago when I called up the staff office at the Children's Hospital and said, Hey, I want privileges. And they're like, wait, what whatcha gonna [00:38:00] do? You know? And I, I was basically one other podiatrist in the country that I found with privileges at a children's hospital as a doctor at Cincinnati Children's.

Um, there were others, but I, I didn't, wasn't aware of it at the time, uh, like Dr. Ed Harris in Chicago. But, um, there are a handful of us now, and our organization is a fairly small one. But, um, uh, it, it's an area that I think frightens a lot of podiatrists. As pediatrics, we, we get the basic training in it, but everybody, not, nobody wants to hurt a kid.

Jesus said, as bad as we are, at least we don't hurt our kids. And then like two seconds later, he said, but even a dog doesn't hurt their kids. You know, he was kind of a left-handed compliment, but, um, we, we all wanna do the right thing for kids. Anybody who's sane wants to do the right thing for kids. So it's a scary field and there's liability.

You know, you can, uh, I guess in most states, your, your [00:39:00] vulnerability to legal action in a, in a pediatric case lasts until they're an adult. So you got like 18 years where you hope everything works out, you know? Mm-hmm. So pediatrics is, is daunting, but also the best opportunity to get out ahead of things.

I know from my own experience that there are things that we're told we're gonna outgrow as children and we don't. I have Metatarsus, adductus, I've written book chapters and several different books about it. The guy who called me up and said, Hey, you wanna write the, uh, chapter for our textbook? Sure. What do you want me to write about?

He said, metatarsus, adductus. I said, isn't that ironic? You know, I've been dealing with consequences of that my whole life. You gotta get shoes that fit right. I had broke my right ankle partly because of that deformity. Um, it's, uh, it didn't go away. Unlike my pediatrician probably told my mom, uh, although he was a great guy, Dr.

Michael, [00:40:00] otherwise, but you know, a lot of literature seems to imply that things are outgrown and they aren't necessarily. So let's start with that. And people with connective tissue disorders. They're highly inheritable. You know, they're virtually every inheritance pattern is shown, depending on which type you're talking about.

There's autosomal recessive, autosomal dominant, X-linked, uh, and then there are mutations. But if a family is showing signs of connective tissue disorders, yeah, I wanna meet the kids. I, I wanna get started on just good footwear. Maybe help with selecting, uh, sports participation, or at least excellent coaching because they could be great athletes, you know, good wrestlers, good dancers, good swimmers, but if they're properly coached, they can have ruined shoulders, ruined spines, ruined legs.

Mm-hmm. So, um, I, I think catching all this, getting the diagnosis early is really a very new thing. When I started in this [00:41:00] almost 40 years ago, people were rarely diagnosed before their third or fourth decade. And it sometimes their diagnosis was postmortem. Because, you know, nobody knew that their aorta was stretchy.

So, um, uh, I think the, just the broader understanding or awareness is good. I know way back with the Aler Danlos National Foundation, we sent a CD to virtually every emergency room in the country saying that, Hey, if this patient presents with a acute abdomen, don't just send 'em home with ma locks. You know, it could be they're aorta getting stretched outta shape or their spleen and they might need emergent care.

So that, I think, was a step in the right direction. And shows like yours are wonderful to just make people aware that, that these things are out there. Doctors always learn about, uh, infections and tumors and [00:42:00] fractures. But how often in medical school do you talk about connective tissue disorder? And when you do, someone will usually say, oh, this is extremely rare.

Like when I started in this, they said EDS occurred in like one in 750,000 live births. I see people every day with connected tissue disorders. Right? Me too. Because I know the look, and all my residents know they, we we're taught in podiatry that you can have a hypermobile first array. And that's interesting.

But why, why would just one joint be hypermobile? Let's look at some other joints. So every one of my residents knows bite and scale, you know, and every lecture I've ever taken, I'll, I'll make everybody stand up and straighten their elbows out, straighten their knees, and see if they go too far, because they might even never checked.

No one ever asked. So I think awareness is critical. Early intervention is highly beneficial. So let's start that with children Now [00:43:00] in adults, sure, you might have, maybe your feet don't hurt. Maybe that's because you're not using them. That's one thing. You might, uh, be tired because you're pots isn't adequately managed, or you might have a chronic fatigue kind of thing, or a fibromyalgia kind of thing.

Or just the chronic pain that can come from hypermobility of multiple joints. So maybe they're underutilized and they would hurt if you were doing more of an average number of steps in a day. So if I could do something to increase your ability to use your feet, I'd like to try even. It's as simple as recommending a particular shoe.

Uh, but I think even in the absence of pain, uh, an examination by a knowledgeable provider. Whether it be a, an orthopedic surgeon, a podiatrist, a physiatrist, a primary care physician, but I think someone needs to ask. I actually wrote a treatise for [00:44:00] Special Olympics in Virginia area too many, many years ago.

I was coaching a couple different special Olympic sports and I noticed a whole lot of foot problems. And as I wrote this thing to be disseminated to other coaches throughout the, the area, and I think it went national at some point soon after that. Because if a person doesn't tell you their feet hurt, maybe nobody looks, in the case of a Special Olympics athlete, there's a good chance they're not gonna complain about a foot problem.

They may not complain about everything. They may just be super thrilled to be out there throwing a shot put. But if no one ever looks at their feet, you wouldn't know that people with. Uh, trisomy 21, for example, have very hypermobile joints. Yeah. They're very much like someone with a connective tissue disorder.

I don't know if there's direct link to the collagen or, or what I know, I know that if you're just drunk, you tend to over pronate [00:45:00] because you don't fall over as easily. So maybe kind of the default mechanism. If there's anything wrong with you, maybe your feet go flat as part of that so you don't tip over.

But, um, I, I think, yeah, you need to ask or you need to look and see if it looks like things are functioning normally. And then I'm always trying to define the role of the foot and ankle specialist and the overall health of the patient. Um, I'm a foot doctor. Yes, I'm a doctor first, and I, I want the quality of a patient's life to be improved by my interaction with them.

That's what I'm after. If that means straightening a crooked toast, they can wear a particular shoe. Cool. Uh, that's fun. Uh, if, if it means, you know, make, put 'em in the right shoes so they can walk a little further, uh, that's a good thing. If it, if it means something, a lot more elaborate, like putting a whole bunch of bone anchors in them and [00:46:00] stents and things, if it helps, good.

But their quality of life improvement is what I'm after. And, uh, I think the, the opportunity to intervene before things have been disabling before the quality of the patient's life has deteriorated past a certain level where maybe they put on weight become, uh, atrophied and deconditioned, maybe their heart, lungs have become deconditioned from a lack of, uh, using their feet.

Maybe I can help with all that by getting out ahead of things so. I would say probably a hundred percent of people who get diagnosed with a connected tissue disorder ought to have a foot examination. We've already done it with diabetes. Uh, every, every American with diabetes probably sees, has a foot examination in most cases by a podiatrist.

And consequently, the amputation [00:47:00] rate has dropped precipitously still way too high, which I blame, you know, people's diets for more than anything. And, uh, the easy access to food that's not very nutritious, but the, um, by examining people, just, just seeing a foot doctor once a year, if you have diabetes, your chances of an amputation can drop from 50 to 90%.

No magic tricks. We just catch little problems before they get to be big problems. 

Dr. Linda Bluestein: I wanna make sure I heard you correctly, because it sounded like you said, the chances of an amputation drop from 50 to 90%. Which wouldn't that be an increase? I 

Dr. Patrick Agnew: overall it a decrease of 50% overall decrease all the way up to 90%.

A lot less amputations than people. A decrease of 

Dr. Linda Bluestein: 90%. Okay. 

Dr. Patrick Agnew: Yeah. Up to 90% has been documented. Um, so, and it not because, not 'cause we're doing any magic tricks, we're just saying, you know, that little callus right there, if we make an adjustment to your [00:48:00] shoe, maybe we can prevent that from becoming an ulcer.

Mm-hmm. Mm-hmm. Getting infected and leading to an amputation. So, uh, I'd like to see a kind of similar mindset regarding connective tissue disorders. Yes, there risk of, there's no real great increased risk of amputation that I'm aware of with connective tissue disorders, but there's certainly a risk of.

Not using your feet like they should be used. 

Dr. Linda Bluestein: I wanna come back to a couple things that you said. So first of all, I, I can already feel the emails coming in for, uh, the comment about the CD going out to emergency rooms because mm-hmm. Most emergency rooms do not behave like they have ever received that cd.

Um, not, it was a long time ago. 

Dr. Patrick Agnew: It was a long, long time ago, obviously. 

Dr. Linda Bluestein: Um, but, uh, but maybe that needs to be revisited. I, I provide letters for my patients and clients that, uh. Talk about the different things that they have going on as it pertains to surgery, anesthesia, emergency care, et cetera. But that is definitely something that, you [00:49:00] know, would be, would be great for emergency doctors to have more of that kind of information.

But, um, I, I just, I just, as soon as you said that, I was like, I, I bet you people are gonna comment on that. And then the all, and then the other thing was about the stretchy aorta, which of course, if you have Marfan syndrome or vascular EDS, we need to be particularly concerned about that. If you have hypermobile EDS y yes, there can be some crossover type things happening, but, um, most of the time that's not the case.

So I just don't want people panicking about that and thinking they really 

Dr. Patrick Agnew: Oh, sorry. Yeah, please don't, no, no, no, no. 

Dr. Linda Bluestein: That's okay. I just, I just, uh, I've just learned that it's better to be proactive and, you know, uh, so, so yes, we, it's, and you know, as much as we can say this person looks like they have hypermobile EDS and not vascular, you know, there's.

None of us are perfect. So, you know, it is, it, is it possible or, you know, there's other reasons why a person can have aortic aneurysm. So, uh, these are definitely very important things for everyone to have on their radar because they're [00:50:00] life-threatening. So the. If you have an aortic aneurysm, for example.

But, but I wanna come back to the foot. Um, and in particular, I want to come back to this Metatarsus Adductus because I have a family member who has this, and it's quite significant, um, and, uh, a, a blood relative. So I probably passed it on to them and, or, you know, influenced the, the growth of the foot. And it was not picked up as a child.

So, uh, therefore this person is an adult and has this, uh, problem, but, but there's no, they're not complaining of pain, but there's major calluses and, you know, significant foot deformity and evidence of, of strain and things like that. So, first of all, can you define for us what that is? Because people are probably listening and going, oh my God, what are they even talking about?

So can you first define what Metatarsus Adductus is? And then I would love to hear if you did miss it in childhood, or if this is something that persists into adulthood. What, what are the conservative [00:51:00] options and when do you know that you need to do something more than conservative options? Um, 'cause I think that is a, an important example maybe to use.

Dr. Patrick Agnew: So, very, one of my favorite topics. Thank you for segwaying into that. Um, not selfishly, although I do have it. I, I suppose I could put my foot up here and I'll show you what it looks like. Go for it. There you go. Um, so see how my fifth metatarsal base kind of sticks out? Mm-hmm. Mm-hmm. Pretty cool socks too, huh?

Very cool. Socks. Love the socks. That is because my metatarsals are abducted. They point in. And actually one of the things I talk about on this is that's really not entirely accurate because if you, if you take tracings of my metatarsals and compare 'em to another person's metatarsals, they probably look about the same.

But there's actually a deformity more in the midfoot at the tarsal metatarsal joints and sometimes the midtarsal joint, [00:52:00] maybe deformity within the qaa forms in the cuboid. Um, that's kind of a good thing because if I was to, for example, surgically treat it, it's a lot easier to operate on two or three bones versus five bones.

So that's just a, a pretty esoteric point about it. But, uh, if you get the sheet on Clubfoot from March of Dimes, it'll say this is the, um, most mild or the most common. I can't remember which form of a clubfoot. I hate to call it a clubfoot at all 'cause I don't think that's representative of, of, of what it is.

You know, a clubfoot is serious deformity with metatarsus, adductus, Aquinas and varus of the foot. And we call it talle equinovarus. That's a whole separate topic. But one of the things in a clubfoot is metatarsus adductus. And it exists often all by itself. And I would prefer everybody call it midfoot [00:53:00] adductus, but I could probably spend the rest of my life trying to change, make that change.

I don't think I'll succeed. Uh, you're talking about maybe one in a thousand live births documented at least. Versus, uh, true clubfoot is probably one in 10,000 live bursts. So, uh, a lot less com or a lot more common than a, than a real clubfoot. Um, and there's been a, uh, an idea mostly propagated by Dr.

Linz Staley up in Seattle and his, uh, his minions that this goes away by itself. And this goes back to an old, old paper 40 years ago where they took Xerox pictures of kids' feet. They put 'em on a Xerox machine, make a picture of their feet, and their feet seem to get better. Uh, now the problem there is when you are born with this, as you walk, you learn not to trip over your feet pretty quickly, and you subconsciously push your feet out a little bit.

Also, [00:54:00] the child's foot has a lot of innate flexibility, so it can bend other things to make up for it. So rather than these bent bones bent in utero, rather than them straightening themselves out, probably the sub Taylor joint over pronate, the midfoot unlocks and you get a compensated metatarsus adductus or midfoot adductus.

So the overall foot looks pretty straight, but it's really like a, an s metatarsals going this way, midfoot going this way, heel going this way. And it looks like they outgrew it, where really they just acquired another deformity. Some of the old treatments of it actually caused this, like putting shoes on the wrong feet.

So when I was a child, uh, 10 million years ago and we used stone knives and bearskins, they, they, they would just put shoes on the wrong feet. And yeah, the foot would look straighter after that. But instead of [00:55:00] actually correcting the initial deformity or malformation. Which I'll define the difference in a second.

Um, they actually created a new deformity by causing a silver pronation to compensate. So, um, it doesn't go away by itself. I know this because every day I look at my own feet and, uh, every day I look at other people's feet who come in with bunions or they come in with a fractured fifth metatarsal, or they come in with an unstable ankle and they come in with particularly problematic hammer toes.

And I look at the rest of their foot and I see, oh, look, they got metatarsals ductus. Or maybe they're a patient again with diabetes or someone other neurologic disease where they have an ulcer at that fifth metatarsal. A lot of people have dysfunction of their peroneous brevis tendon, which inserts right on the base of the fifth metatarsal.

It gets stretched outta shape, it flips over the fibula and gets torn. It doesn't heal well [00:56:00] 'cause it's a tendon, it's mostly fibrous material, not much living cells in there. So there are lots of pathologies associated with this. So what do we do about that as a society or as a medicine in general? Well, we quit telling people they're gonna outgrow it because I've read everything written on children's feet in several different languages for 40 years, and I can't tell you whether or not your kid's gonna outgrow it, which is really what mom wants to know.

Uh, they, you can say, well, according to some papers, a significant percentage, it, it goes way by itself. But I would challenge the scientific, uh, quality of some of those papers. Um, so I generally recommend casting to correct it in the neonatal period. You've got a few weeks in there where there's still oxytocin in the blood.

The bones are plastic, and you could just put a couple of casts on and straighten it right up, uh, [00:57:00] probably for life. Um, after that it winds up being choosing shoes that accommodate this deformity. Now I've kind of looked back at my life personally and, and maybe the, uh, I guess the silver lining, uh, turns out I was pretty good at martial arts that fifth metatarsal makes a good little thing to kick somebody with.

It's, uh, it kind of maybe pointed me more toward, away from things like court sports and field sports to more, uh, extreme sports, skateboarding, uh, hockey, ice skating, uh, and surfing. It, it doesn't seem to be a, an impediment to any of the kind of sports that I chose. Um, and I wonder why I chose those. Maybe it had something to do with that.

Um. Breaking my ankle that was just doing something stupid with martial arts, but my, but I was set up for it by the shape of my foot. So [00:58:00] it's, uh, well, maybe a lot like connective tissue disorders. It can be a superpower too, you know, it's, but uh, too much of it can certainly be disabling. Some people do need surgery for it.

It's a complicated surgery. Uh, some of the surgeries are done within the metatarsals themselves. That may be a little misguided because the metatarsals themselves may not be deformed at all. But, um, we're very good at operating on metatarsals. We do it all the time. It's a familiar area of the foot, so a lot of foot and ankle specialists might choose to operate at that level, and it can definitely make the foot look a lot better.

The problem being the deformity is mostly in the transverse plane. So you can do little osteotomies of each of the five metatarsals, move them over a little bit, put some screws in 'em, and it'll look better. But anytime you move a metatarsal in transverse plane, there's a chance you're gonna move it in the saal plane in frontal plane [00:59:00] too.

So there's lots of opportunity to under correct overcorrect, create new deformity up or down or sideways. So, and you got five chances. You know, we tell people, uh, you've got, uh, in this particular operation, you've got a one to 2% chance of an infection or a healing problem. You've got maybe a 10% chance that you're not gonna be glad you did this.

90% of people who have this procedure are glad they did, would take an example, like a bunion operation. Um, then you're doing five of those. So does, does your chance of complications go up to 50%? I don't know, but there is a chance of complications with that kind of surgery. Um, there's the opportunity to open up the medial canif formm and close down the oid, a thing called a Grine Fowler, where just take the whole foot and swing it over a little bit.

Those bones tend to heal a lot better. They have a lot of metaphyseal bone, [01:00:00] not that much cortical bone. Um, I'm sorry. They have more, a lot more cancellous bone, not, not much cortical bone. So they tend to heal very nicely. And you're really working at the apex of the deformity, which we call the Cora, the center of axial rotation of the, of the deformity, and getting the, the foot swing to swing over a little bit.

So there are surgical procedures that are beneficial, and they're a little kind of minimally invasive patch type procedures. So if your biggest problem is that bumps sticking out the foot, we can whittle it down a little bit. You'll probably feel better for a while. There's a good chance it'll grow back because the foot's still deformed.

And over time, hypertrophic bone conform There. We can do a bunion operation if the, the biggest problem you have with a midfoot duction is your, is your big, your first metatarsal sticks out and you got this painful bunion. We can fix that bunion, but if we don't fairly aggressively fix it and address some of the midfoot [01:01:00] deformity, we're probably not gonna get a satisfactory reduction.

Or it may set you up for more likely to have a, a relapse. So, uh, those are some of the consequences of midfoot reduction. I think the biggest mistake is for someone who sees this in an infant to say, don't worry about it. Most kids outgrow it.

Uh, and who cares what most kids do. You wanna know if your kid's gonna outgrow it. 

Dr. Linda Bluestein: Right? Right. And if there's something you can do to reduce the risk of them having a problem as an adult, then you're, then you're gonna wanna do that. Like, like you said, we, we all care about kids and especially our own kids.

So yeah, 

Dr. Patrick Agnew: all I have to do is get the parents to take off their shoes. I'll, I'll say, okay, you brought in your kid 'cause they walk kind of funny. Lemme look at your feet. And sure enough, you know, 90% of them have the same thing their kid has. I said, they probably told you that your kid's gonna outgrow it.

I'm gonna tell you, that's [01:02:00] unlikely because here's what's going on with your foot. 

Dr. Linda Bluestein: Okay? And I wanna come back to something much more mundane, um, than, than, uh, than Metatarsus, adductus or midfoot. Uh, Aus. So I got a convert. Yeah, so that's one. So yeah, no, no, it's, uh, super. Yeah, yeah. One, one down. How many, how many left to go?

Um, so you've mentioned already footwear and you've also mentioned, um, orthotics, which like, I have custom orthotics. Probably a lot of people listening have custom orthotics. Some people, of course, are just going with the over the counter orthotics. I wanna make sure that people are able to come away with specific tips that might be really helpful for them, even if they don't have this metatarsus adductus, midfoot adductus that we were just talking about.

So, so what specific things should people be looking for in footwear and how does somebody know if they need a custom orthotic versus an over-the-counter one? 

Dr. Patrick Agnew: I'm so glad that, that you asked the first question the way you asked it. So a lot of people say, well, [01:03:00] what kind of shoes should I buy? And they want to know what brand And I, I can never really answer that because uh, people are like snowflakes.

There's so much variation in how your foot is shaped to start with, how you're using it, what kind of surfaces you're on, how many hours you're on 'em a day, what kind of fun stuff you like to do, what your job demands. You know, there's so many variables. So what I often do recommend is characteristics in a shoe.

Mm-hmm. Mm-hmm. And I rely heavily on trusted local suppliers. We've got a running shoe store in town here. I've known the owner for 40 years and we've taken care of a lot of elite athletes together. But I often send, you know, little old ladies with gnarly feet to 'em and say, Hey, get 'em a good running shoe.

They'll probably love it. And, and this is the kind of guy who will take a brand new running shoe from a manufacturer and cut it in half with a table saw to look how it's built on the inside. Mm-hmm. So love, love working with people like [01:04:00] that. Really inquisitive people who are trying to understand how things work, not just sell a product.

So I can't recommend a particular shoe and I can't even recommend too many characteristics in a shoot to such a broad audience. But what I would say is, um. It's a good idea to buy your shoes at the end of the day 'cause there can be a lot of fluid shift and your foot's bigger at the end of the day.

It's a good idea to get the shoe store to agree to take it back if you've worn it for a couple hours at home on carpet. Um, it's a good idea to have purpose driven footwear for different times of the day, different activities in the day. Um, you might need a particular shoe in, in your office because it's got, uh, you know, hard la laminated floors or something.

You might need an entirely different shoe when you go for a walk next to the golf course at home. Uh, you definitely need a different shoe if you're gonna play tennis [01:05:00] or basketball or something. So, uh, it winds up being probably a, a whole prescription of a variety of different types of shoes. Um. But there are some tricks that can increase your likelihood of success, like those first two tricks I just mentioned, um, to orthotics now podiatrists at large, this, I might, you might get a bunch of emails to you about me from podiatrists saying he's an idiot.

What they'll be mad at me about is when I say that orthotics in my mind are a lot more art than science. We've tried really hard to be scientific about how to capture the foot in, its in its natural state, and then tried to influence the function in a positive way. Uh, we've had, we have 3D scanners. We, we have force plates that you can walk on, little transducers we can put on the bottom of the foot and have you walk on 'em to give us different pressure designations.

[01:06:00] Uh, slow motion photography. Uh, gate study labs are fascinating places, but. As we talked about earlier, the foot's a complicated organ. You know, one out of every four bones in your body is in your feet and just thousands of little ligaments and things. Wow. It's a, it's a con. I mean, there's a reason there's such a thing as a foot specialist.

It's not a simple organ. And, uh, you know, hand specialists might seem a lot cooler than us, but let me see that. Lemme see how many people can walk on their hands, you know, and your feet go maybe four times around the world in a lifetime and average lifetime, about a thousand miles a year, 80,000 miles, 20,000 miles around the world.

That, that's how it adds up. It's, it's a pretty good machine if it holds up, which a lot of 'em don't hold up. So I have a job. But, um, that having, having, uh, having the ability to influence positively, that motion by [01:07:00] putting some material inside the shoe, under the foot is a noble effort. But a very complex one.

Much more than I think people realize that's the bad news. So the good news is a whole lot of people can get away with like an over the counter orthotic. Um, now should that be flexible? Should it be rigid? Should it be padded? Should it be a little higher? Should it be a little bit lower? I think there's a lot of experimentation that goes into that, and I certainly have a lot of patients come in my office with a bag full of orthotics and like, uh, they'll say this, out of the 30 orthotics in my bag, this one's probably the best, you know, but I, here's where it gets a little more complicated again, and I get, I get mad at the Good Feet store.

Uh, I hope I don't get in trouble for a brand mentioning a brand name, but, um, uh, they, you know, they've got a, a very clever upsell. People will go in there [01:08:00] with a foot problem and, and they'll wind up with $400 worth of three pairs of orthotics. I get kind of mad because that's not always necessary. And I, and I think it's sometimes just a clever sales tactic, um, like whoever it is that talks all these people I know into buying really expensive coffee, but I hear McDonald's is the best.

I don't know. I don't drink coffee. I'm afraid of it. I don't like being addicted to things. So, um, but an orthotic, um, sometimes just one simple $40 or $20 orthotic is, is good for a particular condition, a particular patient. Um, and people with connective tissue disorders, I think maybe they do need a couple of different orthotics.

I saw a brilliant presentation at an conference where this guy. Front loading your or said a lot of people with EDS kind of front load their week. [01:09:00] They do all their physical stuff early in the week. 'cause they know they're gonna be wrecked by halfway through the week and have to rest the rest of the week.

Well, that's one way to go. Another way might be to kind of plan out each day so that if you have some strenuous things you need to do on your feet in a week, you do a little bit Monday, a little bit Wednesday, a little bit Friday before you actually get wrecked and have and just are. You can't really function and maybe at that time you can tolerate maybe a more aggressive, more rigid, more form fitted orthotic.

But then later that same day, you might wanna just take your shoes off and walk barefoot. But I'd submit that that's a bad idea because your feet are really not up to that task. But maybe a little softer orthotic later in the day could be a good idea. And that could be like a $20 little piece of neoprene.

And it doesn't have to be anything fancy or [01:10:00] custom made, but just something to help resist some of that extraneous movement. It irritates joints and creates chronic inflammation and maybe makes you more inclined to sprain or twist something. So, uh, the, the answer to orthotics is, I don't know the answer.

Um, but, and, and it's a complicated topic, but I think it's worth pursuing. Uh, I think just the concept that this foot with these hypermobile ligaments is gonna put up what the demands of modern society is. Unrealistic. Just average people walking around on concrete in Virginia Beach don't really, shouldn't do it barefoot and.

Some shoes are basically barefoot. Uh, they're, they're really not doing anything functional to help except maybe keep a thumbtack from sticking in your foot. Often not even that. You know, I [01:11:00] have a lot of people walk in with a, you know, why's my foot hurt? Well, there's this nail sticking in it. Yeah. That's not good.

That's 

Dr. Linda Bluestein: not good. Yeah. Um, and I'm so glad you brought up about Barefoot because that is such a huge movement. Right. And there's even like barefoot shoes and that, and that kind of thing. Um, I've had, I've had so much problems with my feet, but now my feet are very happy, knock on wood. Uh, but I, I pretty much always have some kind of shoe on.

I might have like, um. I'm gonna mention a brand too. I, I wear UFOs inside the house, um, that have, you know, those are pretty nicer. Cool. Yeah. And I, and I have a lot of pairs. I have the indoor pairs and the outdoor pairs, and I take a pair when I go to a friend's house and I wear them inside their house.

Um, and otherwise I have other brands of shoes with my customer, orthotics that I'm wearing. Um, and my feet are much happier now. But of course, there are these people who are super passionate about how important it's to be barefoot. So, could you, just as a final, uh, we'll get to our hypermobility hack in just a second, but as our final, final thing [01:12:00] before we get to that, could you just say a little more about what your thoughts are about being barefoot for people with EDS?

Dr. Patrick Agnew: Yeah. I'm not a fan. Um, I, I, I get. The concept. You know, we're born barefoot. We were designed to be barefoot, alright? We, we were born naked too, but I would prefer people wear clothes. Most of the time I've been to naked beaches. It's never a good thing. You just, you can't unsee that.

I've just, I just went to go surfing by the way. But, um, so, uh, the idea of barefoot walking, barefoot running, making your feet somehow stronger, more durable, there may be some truth to that, but you can also beat your hands on concrete in order to make it a better punching tool for martial arts. But will it be a useful hand afterwards?

I don't, I don't think so. Um, so you, you can beat your feet up in [01:13:00] order to try to make them tougher, but I'm not, I'm not sure that the risk reward benefit works out well, and I've seen so many people with. Sustained from barefoot running, trying deliberately to do that. Um, there may be places where that's necessary.

You know, we're, we're the home of Naval Special Warfare, at least on the East coast. We, we have all these warriors that, yeah, they have to run around a wetsuit booties sometimes, and their feet maybe need to be beaten into submission. But for the average person, I don't think it's a good idea. Um, the, the other, uh, aspect of that is, um, the, uh, well the con there, there was an old concept of when you walk in sand, your heel sinks down.

And they came up with these things that you're probably too young to know about called earth shoes. And, uh, it had a, [01:14:00] what's called a negative heel. The heel was lower than the forefoot, and the concept was, well, this is because. You have, uh, when you step in the sand, your heel sinks down. So that's how you're supposed to walk.

Well, no, you're just not supposed to walk on sand very much. You know, you're not, you're not a, a semi-aquatic animal. I am. I surf every day. I walk into sand every day, but I, but I do a, a limited amount because it'll ruin your feet. Which brings me a one last thing I wanted to mention, but maybe this'll be the hack that we're gonna get to.

Um, okay. 

Dr. Linda Bluestein: Go for it. You can make this the hack. That's perfect. 

Dr. Patrick Agnew: Okay. Aquinas. Um, so one of the things that surprised me, uh, in people with connective tissue disorders who are bendy all over their body is they can still have a tight heel cord. Uh, a thing we call Aquinas named after equestrian horses. Horses walk on their tiptoes.

Mm-hmm. A horse hoof is just a big toenail, and that's cool for horses, but it's not so good for humans if your ankle [01:15:00] can't dorsiflex as far as it's supposed to. Other things are gonna have to make up for that. The midfoot joints, the knee, the hip, the back. Um, so it's good to recognize that it's important as a part of every foot examination on just about any disease process to make sure that that ankle can dors flex enough.

And if it can't, something might need to be doing about done about it. So here's a crazy hack for people with Aler stainless syndrome and other connective tissue disorders. You might need to stretch. Mm-hmm. But just one thing, just set achilles tendon and that can be a little tricky. Probably it should be done with a shoe on, with a orthotic, you have to be sure that the middle part of your foot, like the second toe, is pointed toward the wall when you do a wall pushup, because otherwise you might just slew your foot out and bend your foot and you're not really working on a heel cord.

Wouldn't even be a [01:16:00] bad idea to get with a physical therapist and have somebody show you how to do it right in the first place. Dr. Patrick Hir in Indianapolis is probably the, uh, most well-versed person on the deform Aquinas. Um, he has detractors that fight against him and say, well, you know, a whole lot of professional athletes have very tight heel courts and, you know, maybe it is again, a, a deformity that can be a superpower.

It's something that might make you jump higher in order to stuff a basketball. But, um, I do know that a whole lot of pathologies are associated with a tight heel cord and it, and it's just a surprising thing that happens to people with connective tissues. The reason it happens, I'm not sure, I think it's sometimes a compensation thing that, um, when your foot.

Is trying to do too many things with each step. Your heel cord just picks it up off the floor prematurely and gradually gets stronger and stronger and [01:17:00] contracted. Lots of people weightlift and they'll, they'll do toe raises to try and strengthen their calf muscles and make 'em look nice. Um, but if you don't also strengthen the balancing muscles in the front of your leg, you'll wind up with an imbalance.

So Aquinas is something to be aware of and to look for for anybody with connective tissue disorder and a lot of other things. 

Dr. Linda Bluestein: So, so that's super interesting because I have had probably for eight years now, or give or take, um, uh, an achilles tendinopathy on the left side and it, it'll flare up, it'll get better, it'll flare up.

And I was on a family trip once and I absolutely refused to miss out on a, on a hike and I was already quite sore and I figured out how to use some tape and some topicals to cover up the pain. Mm-hmm. Not a good idea in hindsight. Um, risky. And I went on the, yeah, risky. I went on the hike anyway and I had [01:18:00] pain that woke me up from sleep for months after that.

Then it got back to kind of, you know, the baseline. But, um, I kind of forgot that the physical therapists from time to time have definitely recommended that I try to stretch out my calves and my soleus muscle and things like that. So, sounds like maybe I need to get back to doing that, even though I know, I know they're not the exact same thing by any means, but Sounds like that'd be a good idea.

Dr. Patrick Agnew: Yeah, I think you figured it out. And there are other things you can add to that. Other little hacks like may, maybe wearing a splint while you're sitting doing work or watching TV at night. Some people can even sleep in them. Uh, it seems like 35 bucks on Amazon. I do have one. A big difference. Nice. I do have, yeah, I have 

Dr. Linda Bluestein: one and I slept in it for a little while, but then, you know, every time you get up to go to the bathroom, you have to remember to take it off or, you know, um, but could be hard's hard on 

Dr. Patrick Agnew: relationship.

You can hurt somebody with a thing too. Right, right. 

Dr. Linda Bluestein: I don't know where I put it. I'll have to, I have a whole like, massive box [01:19:00] of all of my, you know, braces and splints and, uh, you know, various different devices like that, as I'm sure most of the people listening right now have. So, um, I'll definitely though, uh, re-explore that.

And that's a good idea. Even just like you said, while sitting here working or, 

Dr. Patrick Agnew: or the idea, put it next to your keyboard or your remote control so you remember to put it on when you're sitting there. Dr. Hir also invented one that you can use just for a certain period of time each day as almost like a therapy device.

Oh. Because it's really hard to keep it on all, all night. That's, that's a problem. 

Dr. Linda Bluestein: So what kind is that? That's a, that's a specific one that, 

Dr. Patrick Agnew: yeah, it's a, it's a. It's a Aquinas splint. I can't remember his brand name for it, but, um, okay. If you look up Patrick to hear an Aquinas splint, it'll be pretty easy to find.

Dr. Linda Bluestein: Okay. I can put, put that in the show notes so people can, can find it if they're like, oh, that sounds interesting. So, okay. Sometimes 

Dr. Patrick Agnew: I have to operate on it, sometimes I have to surgically lengthen it because it's just permanently contracted, but, 

Dr. Linda Bluestein: [01:20:00] mm. 

Dr. Patrick Agnew: It's a, it's a thing not to miss as part of this whole mm-hmm.

Picture. 

Dr. Linda Bluestein: Yeah. Yeah, definitely. Definitely. Okay. Well thank you so much for all this great information and it's so fascinating how complicated the feet are and how it affects everything. Right. I mean, it affects stability of probably every other joint in the body, right? 'cause that's our base of support. So I, I think the feet are underappreciated for sure.

I 

Dr. Patrick Agnew: think sometimes some of the autoimmune characteristics or of connective tissue disorders, which you know, may not actually be autoimmune disease, might well be because of chronic inflammation from chronically subluxing joints. And the foot's probably a good source for that. So. Mm-hmm. Yeah, there are wide ranging implications of malfunctioning feet.

Let's get at 'em early, do something about it. Thank you so much for the opportunity to talk about it. This has been fun. 

Dr. Linda Bluestein: Yes, absolutely. And for people who want to find out more [01:21:00] about your incredible work, uh, where's the best place for them to find you? 

Dr. Patrick Agnew: Well, they can contact my practice, coastal Podiatry Group.

Uh, I'm the chairman of the department at Eastern Virginia Medical School now the, uh, Macon and Joan Brock, old Dominion University of Virginia Health Sciences. We have the longest name of any medical school in the world. Yeah, that is, that is 

Dr. Linda Bluestein: a really long name. Yeah. 

Dr. Patrick Agnew: We still call ourselves E-V-M-S-A lot and, uh, that's not a great way to contact me 'cause I'm never in my department chairman office.

I'm always over here trying to take care of people. So coastal podiatrist groups, my private practice, um, I have, uh, you can get at me through the Aler Stain Society. They have links to connect to me and some old YouTube videos and things from lectures I've given. Um, and yeah, call me, calls from all around the world about this.

Uh, and I try to answer all of them. Sometimes it takes a little while, but I try to answer all of them. 

Dr. Linda Bluestein: Yeah. The, the need [01:22:00] is great. I mean, the number of people that are suffer suffering from these conditions and, and really struggling to get good care is just. It's mind boggling. It's, it's, uh, it's really, really sad to see how people struggle, but it's so helpful when they can hear from people like you and get some ideas and try to implement things, um, on their, on their own.

And then they may or may not, you know, need to actually come and see you, but at least they have some places to start. So I really appreciate you taking the time. I know you're really busy, so thank you so much for, for joining me on the Bendy Bodies podcast today. 

Dr. Patrick Agnew: Well, surf's not very good today. This was fine.

It was per perfect day. It was great last week. We had a hurricane go by, but, and thank you so much for providing a platform to get the word out. That's wonderful thing that you're doing, I think. 

Dr. Linda Bluestein: Oh, you're, you're, you're very welcome. And I didn't realize that I was competing with surfing, so 

Dr. Patrick Agnew: Not today.

Dr. Linda Bluestein: Well, thank you so much and, uh, really appreciated this conversation.[01:23:00] 

Well, that was such a great conversation about feet and ankles with Dr. Agnew, and I hope you found it as interesting as I did. Thank you so much for listening to this week's episode of the Bendy Bodies. With the Hypermobility MD Podcast, you can really help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast.

This helps raise awareness about these complex conditions. Did you know that I also offer one-on-one support for both clients and healthcare professionals? Whether you're living with hypermobility or caring for people who are, I got your back. Check out my coaching and mentorship options on the services page of my website@hypermobilitymd.com.

You can also find me, Dr. Linda Bluestein on Instagram, Facebook, TikTok, Twitter, or LinkedIn At Hypermobility MD you can find human content, my producing team at Human Content Pods on TikTok and Instagram. You can find full video episodes of every week on YouTube at Bendi Bodies Podcast. I'm so glad you're enjoying the.

Bendy Bodies Podcast. We love bringing on guests with unique [01:24:00] perspectives to share. However, these unscripted discussions do not reflect the views or opinions held by me or the Bendy bodies team. Although we may share healthcare perspectives on the podcast, no statements shared on bendy bodies should be considered medical advice.

Please always consult a qualified healthcare professional for your own care. To learn about the Bendy Bodies program, disclaimer and ethics policy submission verification licensing terms and HIPAA release terms, or to reach out with any questions, please visit bendy bodies podcast.com. Bendy Bodies podcast is a human content production.

Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.

Thank you so much for watching. If you enjoyed this video, give it a thumbs up and leave a comment below. I love getting your feedback. Make sure to hit that subscribe button and ring the bell so you will never miss an update. We've got plenty more exciting content coming your way, and if you're looking for more episodes, just click on one of the videos on the screen right [01:25:00] now.

Thanks again for tuning in and I'll see you in the next episode.