EDS Foot and Ankle issues with Dr. Patrick Agnew

[00:54] 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 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 you don't miss any of our special hypermobility hacks. Here we go.
[01:48] Well, I am so excited to be here with Dr. Agnew. How are you doing today?

[01:53] Dr. Patrick Agnew: I'm well, thanks for asking. How are you?

[01:53] Dr. Linda Bluestein: 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.

[02:07] Dr. Patrick Agnew: Pretty much everyone I meet. Yeah.

[02:08] Dr. Linda Bluestein: I bet. So let's just start with how do connective tissue disorders like the Ehlers-Danlos syndromes, Marfan syndrome, Loeys-Dietz, et cetera — how do they affect the feet and ankles differently than the general population?

[02:24] Dr. Patrick Agnew: It's not 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 Ehlers-Danlos National Foundation was here in Chesapeake, Virginia, adjacent to Virginia Beach. And I had been in practice for about 5 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. Pat Alossino, 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 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 everyone I talked to, they had different foot and ankle complaints, and I started kind of keeping track of that and studying it for the next 3 decades or so, 4 decades almost.
[03:27] The effect I thought would be overpronation — where feet just flatten out more than they're supposed to. And this is something that is very commonly noticed in podiatry offices and orthopedic foot and ankle surgeons' offices. And although they call it progressive collapsing foot deformity, because they don't want to admit that flat feet hurt, they do sometimes and have been at least associated with things like bunions, hammertoes, plantar fasciitis, premature arthritis. At the same time, a lot of children are born with flat feet, maybe outgrow them, maybe don't, don't necessarily seem symptomatic. You go all the way up into military recruits. And there was a study done in Canada on military recruits way back that showed that a lot of them had flat feet. As long as they weren't stiff or they didn't have equinus, they could still perform military duty. This was after World War II. During World War II, people were mostly discharged or denied the opportunity to serve if they had flat feet.

[04:47] Dr. Linda Bluestein: Oh, wow.

[04:47] Dr. Patrick Agnew: But then there are flat feet and then there are flat feet. So it turns out that people with Ehlers-Danlos syndrome probably have a pretty similar mixture of flat feet — maybe a third of the population — have what we might call normal feet in the middle, and then maybe 10% have higher-arched feet, often associated with neurologic diseases. Not always, but certainly often. And 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. I wish it was more scientific, but it really isn't.
[05:27] But there is a higher incidence of things like club feet, metatarsus adductus, calcaneovalgus — 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 plastic, moldable bones in utero, they can get kind of squished and get various positional deformities that they're born with that aren't necessarily malformations, but may be deformations. And therefore maybe, in some cases more mild, in other cases maybe even more severe.
[06:15] But the thing that happens, I think, in the connective tissue disorders — regardless of whether you have too high of an arch, too low of an arch, or 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. And so joints book open at the bottom, pinch at the top. Sometimes they compensate by overpronating, or tipping over the other way completely and twisting ankles and things like that.
[06:50] That's one way in which connective tissue disorders seem to affect the foot and ankle. Unstable ankles. People just rolling their ankle, tripping over air. 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. And the odd thing is you go and take an X-ray, everything looks fine. You take an MRI, it might show the defects, it might not. It might even say the ligaments are normal because unless they're acutely inflamed, an MRI's not going to light up. So it might look like a normal ligament, but it might be bubble gum — just real stretchy and not really holding the ankle together.
[07:47] Other areas of the foot that tend to seem to get hurt with connective tissue disorders are like the sinus tarsus. So you have this little hole in your foot called the sinus tarsus, and it's got a little plug in it called Hooke's tonsils. So you have tonsils and sinuses in your feet. Most people don't know that. But that little tonsil has a tiny nerve in it that can get pinched between the talus and the calcaneus as it pronates, and that can cause pain in that area.
[08:10] The thing that surprised me most probably was the relatively high incidence of symptoms like plantar fasciitis — pain at the 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 the term plantar fasciitis is nomenclaturally 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 stretches in it. So it should be called plantar fasciosis. 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 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 do seem to have a high incidence of heel pain.
[09:22] So those are the common things. Also, secondary deformities. If your foot sags all the time or overpronates, you might be more prone to bunions and hammertoes. These seem to be very common, and there are often particularly challenging types of toe deformities that don't necessarily respond to standard treatments.
[09:43] So you may see on your social media feed a certain particular brand name of bunion operation — a type of marketing that I kind of find repulsive, but it's out there. And it recommends fusion of the first metatarsal to the medial cuneiform at the base, an old procedure called a Lapidus. It's 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 and you fuse 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've got to fuse the next and the next and the next. I'm not a spine surgeon, but it sure seems that way.

[10:50] Dr. Linda Bluestein: No, 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 definitely that's a downstream consequence quite often.

[10:58] Dr. Patrick Agnew: Sometimes necessary in the foot too. But if we can limit motion as opposed to eliminating motion, 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 AFO — a higher-up orthotic — those might be very reasonable things to try.
[11:26] But when those things fail, which seems to happen a lot, people with connective tissue disorders are sometimes kind of Houdini. They can wiggle out of orthoses that are supposed to hold them together. And those folks sometimes do need limiting of motion in the joints. That's what I've kind of worked on a lot — trying to come up with ways to limit motion without eliminating it in order to improve function. So I've kind of invented one procedure where we replace the ligaments of the first metatarsophalangeal joint using tiny bone anchors that we kind of borrowed 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 posters on it, and I've spoken about it at a lot of meetings. We don't have a powered controlled study at this time because for a long time we've been playing around with the right anchors. Also, people with connective tissue disorders are not the best research cohort. It's such a spectrum that it's very hard to pigeonhole people into whether they meet criteria for research or not. Plus, nobody really wants to be in the control group. Everybody wants to get better. So they want me to actually do the procedure.
[12:47] So we've been doing the procedures, generally with very, very good results. And minimally invasive — 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.

[13:19] Dr. Linda Bluestein: Right.

[13:20] Dr. Patrick Agnew: So I think that's a valuable part of the treatment. And we often do several things together. We'll straighten the big toe, reinforce the ligaments of the ankle similarly with bone anchors and suture material. We might put a little stent into that sinus tarsus to fight some of that sagging overpronation. It's kind of our blue plate special for connective tissue disorder. You get all those things done at once. You can step on it that day to a certain degree. You get a total of about 5 stitches. Pretty cool stuff.
[13:57] So I feel really fortunate that I have this very limited part of these disorders to try to help with, because I'm overwhelmed by the complexity and extent with which these things affect people. One of the old directors of the EDNF Medical Advisors Panel — before it morphed into the Ehlers-Danlos Society, which is more international — said that every cell in your body is connected to the next cell by connective tissue, and all systems have connective tissue. So any system in the body can malfunction when the connective tissue's not working right. 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. I'm a carpenter, maybe a cabinetmaker on a good day. I can put together little joints and make hinges swing properly, and I can make a really pretty cabinet.
[15:06] But I do try to understand things like mast cell activation and POTS and dysautonomia. And 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 work. Tell the anesthesiologist not to pull too hard on their head. You've got to be careful taking care of people with connective tissue disorders. You need to be aware of the potential for complexities.
[15:38] I had one patient we had a very good outcome on with her foot surgery. And then in the post-operative recovery, her shoulder fell out of socket. So I called up my orthopedic buddy and said, hey, can you put a shoulder back in for me? And he said, what the hell did you do? You're working on her foot — her shoulder came out. It wasn't me. It's the disease, it's the disorder.
[16:01] But 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 work together. There's a lot of communication between patients and doctors who will listen. 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 3 patients in a row show up one week and say, hey, I got this thing called POTS. I'm like, what's POTS? I had to go look that up. Some things were better defined earlier, like pectus and Chiari malformation, so I'm aware of those and try to help people get to proper diagnosis and treatment.
[17:06] We do have a new Ehlers-Danlos Center theoretically opening at 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 network with that. I still send a lot of people all the way out to Indianapolis to see Dr. Frank Amano. I think she's backed up about 5 years or something, but she's so amazing and smart. And so the whole networking thing is a constant effort to try to get access to various resources to help people. Just finding a local POTS doctor or rheumatologist that will believe me when I tell them someone has something — it's not always easy.

[18:00] Dr. Linda Bluestein: No, it's definitely not. And that whole networking thing is also really challenging. 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 waitlist. If somebody is local, I know where to send them because I know the local resources, but if they've come from Germany or Greece or something, or even a different part of the US, it's a lot harder because I don't know what the resources are that they would have access to.
[18:29] Another thing I wanted to mention — my first ankle surgery was for sinus tarsi abutment syndrome, is what they called it at that time. 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.

[18:49] Dr. Patrick Agnew: Oh gosh.

[18:49] Dr. Linda Bluestein: Is that what you're referring to when you're talking about the sinus in the ankle?

[18:56] Dr. Patrick Agnew: Yes, ma'am. That's exactly what I was talking about. And I'm so sorry to hear that you had to have 5 surgeries. Happily, it's usually just 1 when we put a little stent in there.

[19:07] Dr. Linda Bluestein: Not all for that, though.

[19:09] Dr. Patrick Agnew: Oh, OK. Gotcha.
[19:11] But there are — we often put a little stent in there. A stent, of course, is something that goes into a space in the body that already exists, as opposed to an implant where you have to create a place to put the thing in. And these stents look like little bullets. They're anywhere from 6 to 10 millimeters at the base and anywhere from 4 or 5 millimeters all the way down to about 2 millimeters at the tip. Some of them are just cylindrical, some of them are kind of like a pumpkin seed shape or a cone. Different manufacturers are trying to come up with more and more anatomically well-fitted ones. But the fact is everybody's sinus tarsus can be a little bit different. And so where a particular stent might work for a particular patient, you might need a different one for a different patient, and you really don't know until after you put it in.
[20:15] But generally they're very well received. Better than 90% of the people we put them in are happy that they have them and they're comfortable. Occasionally, as someone grows, we might have to take it out and put a bigger one in. And occasionally the one we choose initially just isn't comfortable and we try a different one. But that is a nice gentle way of stabilizing that subtalar joint, stopping that talus and calcaneus from banging into one another and pinching Hooke's tonsils.
[20:46] And again, you can put a little bit of weight on it immediately, which is nice. You're supposed to kind of stay off of it for 3 to 6 weeks, and it might take 3 months before a particular individual is completely comfortable with the change — having this new thing in a spot that maybe didn't even hurt before. If they had plantar fasciitis, bunions, hammertoes, I might want to put one of those in to keep those things from coming back after I go to all the trouble of fixing them. And I also might just want to 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 — you do it all with one little incision.
[21:42] But it does change the way someone walks a little bit for the better, and that can take a little getting used to for a few months. I don't know what they did to your sinus tarsus initially, or if you had to have it reoperated.

[22:00] Dr. Linda Bluestein: I don't think there was a stent. They did reoperate on that. And then I've also had some other procedures. But I don't think I had a stent — this was in the early '80s. So would that make sense?

[22:10] Dr. Patrick Agnew: Well, I hope they didn't have to fuse your subtalar joint. I think that —

[22:13] Dr. Linda Bluestein: No, no, I don't think so.

[22:13] Dr. Patrick Agnew: That can be a pretty horrible operation. I mean, it's a joint that's not that difficult to fuse — the talus is just sitting right on top of the calcaneus, it's pretty 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 important parts of foot function.
[22:39] I have this slide in my slide deck that has Michelangelo's Sistine Chapel painting where God is pointing to Adam's finger to bring life to him. Well, mine has a foot there instead of the finger. And the point of it is that the thing that makes you actually human in a lot of ways is your subtalar joint, your foot. There aren't that many primates that can spend any time on two limbs. Most of them have to kind of amble around with hands and feet. We all have thumbs, all the primates do, so that's no big deal. You know, we're very proud of our thumbs because we can eat Doritos with them, but really it's not that big a deal — they have tails that can do what our thumbs can do. We're very proud of our brains, and our brains are pretty big, but there are cetaceans, like dolphins and whales, that have way bigger brains than we do and maybe are smarter. They have a pretty cool lifestyle — they get to surf every day. I only get to surf when a hurricane goes by Virginia.
[23:48] But the thing that makes you really special is your subtalar joint. It's what we call a pronating mobile adapter. So at one point in gait, 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. That's super cool that it can go through all those changes in a fraction of a second during each step you take.
[24:28] And if you eliminate that ability, you create almost a peg leg. It's like it might as well be a prosthesis in some ways — that stiff foot. And sometimes it's genetically stiff. You can have 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 really bad foot to have. I can take them apart, but they still don't work exactly like they're supposed to.
[25:02] 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. This is a thing that we've noticed. If a big toe joint's really misbehaving and someone decides to fuse it, that'll take care of that problem. But then in the middle of the foot, those joints will have to do extra work and they can become diseased. Or if that joint is fused to fix a deformity of the first ray, then maybe the midtarsal joint or the subtalar joint starts to dysfunction. And even sometimes when I limit motion, I've still had patients in whom other joints begin to dysfunction with just limited motion.
[25:57] So we'll put a stent in the subtalar 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 stretched out of shape. So on occasion we have to kind of bolt that together with a couple of buttons and a string. And I can, I suppose, keep going up higher and higher until it gets to the teeth or something. But I understand temporomandibular joint issues are pretty common. I don't think I cause it usually, but yeah.

[26:33] Dr. Linda Bluestein: Yeah, it is a common problem for sure. And that's really interesting what you were saying about feet and how that's something that makes us very unique. Because I do think about the other things you mentioned — the brain and the thumbs — and we're kind of told those things. But feet are so much more complicated than I think most people realize and do so many important things.
[26:54] And so many people have ankle instability. They've had multiple ankle sprains. You mentioned already kind of tightening up the ankles. I see in my clinic all the time — I see a lot of pronation, I see a lot of flat feet. For recurrent ankle sprains, how does a person know if that's something that needs to be addressed surgically or not?

[27:22] Dr. Patrick Agnew: Ankle sprains need to be taken very seriously. They are the most common injury in America. About 10% in just the general population go on to some long-term disability. So it's a serious injury to start with. We all think of it as minor — 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.
[27:52] At very least, you need maybe some physical therapy. One of the most common problems with repetitive ankle sprains is probably in some part because you've also stretched the nerves. And by stretching those nerves, you can temporarily at least lose some proprioceptive sense, some kinesiological sense of where your foot is in space. So you might be more inclined to sprain it again. So some at least self-directed or formally applied physical therapy may reduce the risk of repeated sprains.
[28:27] Bracing can be a good idea for a lot of people, particularly if you might enjoy activities that are on uneven surfaces — sports, recreational walking, hiking. There are a lot of braces that can help. But as I said, the Houdini, flexy people can sometimes just pull right out of a brace without even undoing it — which is, by the way, how Houdini did a lot of his tricks. He was — I think he was probably hypermobile. He could get out of handcuffs and things, a straitjacket.
[29:03] But if those things have been tried and sprains are still occurring, surgery is indicated. It's a very low-risk, high-yield procedure that can save a person from premature arthritis and chronic pain. So I'm a big advocate of reconstructing ankle ligaments.
[29:25] Now, let me back up a step on that. When I first met people with connective tissue disorders, I said, oh, I'm never going to operate on these folks. This just seems like a terrible idea. The skin might not heal, I might not be able to stop bleeding of an artery or something. It terrified me. But after learning more about it, I've found out that pretty much just like everybody, sometimes a little operation early on can save a bigger operation later. And so some of these small minimally invasive procedures that we've pioneered, I think are worth exploring early on.
[30:07] And like you, we've had people come from all around the world for this. We actually are pretty well set up at our medical school. We have a little hotel inside the hospital — the main teaching hospital. They call it the guest quarters. They took some old hospital rooms and made them into a hotel so family can stay for a weekend. Coming on a Friday, I do my thing. They might stay overnight as an observation patient so we can manage pain and such, and then stay in the guest quarters Saturday and Sunday, see me Monday, go back to Hawaii or wherever they came from. And that's been a fairly reproducible pattern. Doesn't always work — I have a patient that went back to Indianapolis with some complications, but happily I had trusted colleagues there that could help manage those. So that's a pattern I could offer to pretty much anybody in the world.

[31:05] Dr. Linda Bluestein: That's good to know. They can come out and potentially stay there for less expense and more seamlessly than if they were to go to a regular hotel, and have maybe a little more ease of access if there was some kind of a problem or complication. And then basically you clear them to leave town — obviously you don't know for sure exactly what the future's going to look like, but you see them again before they leave to make sure that they're doing okay.

[31:33] Dr. Patrick Agnew: And then I cross my fingers and 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 thrombophlebitis in people with connective tissue disorders. I don't know that this has ever been documented anywhere, but there's some logic in it. If there is this elasticity in the veins, a tendency toward pooling — maybe part of what causes POTS, for example — that might cause sluggish venous return and a higher risk for things like blood clots after surgery.
[32:12] We know that it can affect the immune system. The immune system is made of connective tissue, so it doesn't always work right. And there are antibody deficiencies and things that can occur. So postoperative infection rate may be higher than average. We've seen it very rarely, but it's not unheard of.
[32:38] Pain control is not easy. Some people have a genetic propensity for poor responses to some traditional approaches to pain. And then there is the whole dilemma of getting local anesthesia to work. I can do pretty much everything I do with local anesthesia and a little intravenous sedation, but some people with connective tissue disorders — local anesthetics just don't seem to work very well.
[33:12] Now, we've tackled that problem. In my mind, it's always been that your skin is connected, your superficial fascia is connected to deep 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 disperses — it doesn't stay where it's supposed to be.
[33:37] So we've used local anesthetics mixed with things that help keep them in place. Epinephrine. In cases where we can — you might not be able to use that on a toe, it might make the circulation stop and the toe falls off. That kind of solves the hammertoe problem, but it's not cool. Not what we want. We have seen drugs mixed with other things — like Exparel, I know, is a brand name of a local anesthetic mixed with kind of a colloidal suspension that stays in place well. Lately, we've been making up our own local anesthetic cocktail at the hospital we call REC. It's got ropivacaine, epinephrine, clonidine, and ketorolac. So you're attacking pain from 4 different pathways. You've got the local anesthetic, epinephrine to keep it where it's supposed to be, clonidine to make the nerves happier and more stabilized, and ketorolac is a powerful anti-inflammatory. We frequently use that in at least the rear foot part of our procedures. In the forefoot parts, sometimes we just use some ropivacaine and clonidine. So we're working on it, trying to figure out the best way to keep people comfortable.

[35:08] Dr. Linda Bluestein: That's very interesting. People are, I think, very aware of the problems with local anesthesia when it comes to dental work and things like that. But in your field, very, very important. As an anesthesiologist, I used to do blocks for people that were having various different foot surgeries — peroneal blocks or whatever. And 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 a longer time for it to set up, or they need to be redosed more frequently. So it's good that you're very aware of that. And hopefully other podiatrists are going to be listening to this and will say, oh, that sounds like a really good cocktail — maybe I'll try that too.
[35:55] We're going to take a quick break. And when we come back, I want to talk about 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 going to take a quick break and we'll be right back.

[37:39] Dr. Linda Bluestein: Okay, so we're back with Dr. Agnew, and one of the questions I had was whether 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? Because you were talking about how a lot of times we think — maybe the healing's not going to be 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 because 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?

[38:22] Dr. Patrick Agnew: I think that's a brilliant question. My other kind of specialty area is I'm on the board of directors of the American College of Foot and Ankle Pediatrics. There are now two podiatrists we have on staff at our local children's hospital — me and one of my former residents, Dr. Bruno. 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? What are you going to do? I was basically one of two podiatrists in the country that I found with privileges at a children's hospital, the other being a doctor at Cincinnati Children's. There were others, but I wasn't aware of it at the time.
[39:22] It's an area that I think frightens a lot of podiatrists — pediatrics. We get the basic training in it, but nobody wants to hurt a kid. And there's liability — in most states your vulnerability to legal action in a pediatric case lasts until they're an adult. So you've got like 18 years where you hope everything works out. So pediatrics is daunting, but also the best opportunity to get out ahead of things.
[40:16] I know from my own experience that there are things that we're told we're going to outgrow as children and we don't. I have metatarsus adductus. I've written book chapters in several different books about it. The guy who called me and said, hey, you want to write a chapter for our textbook — sure, what do you want me to write about? He said metatarsus adductus. And I said, isn't that ironic? I've been dealing with consequences of that my whole life. You've got to get shoes that fit it right. I broke my right ankle partly because of that deformity. It didn't go away, unlike what my pediatrician probably told my mom. A lot of literature seems to imply that things are outgrown, and they aren't necessarily.
[41:02] So let's start with that. In people with connective tissue disorders, they're highly inheritable — virtually every inheritance pattern is shown depending on which type you're talking about. There's autosomal recessive, autosomal dominant, X-linked, and then there are mutations. But if a family is showing signs of connective tissue disorders, yeah, I want to meet the kids. I want to get started on just good footwear, maybe help with selecting sports participation or at least excellent coaching. Because they could be great athletes — good wrestlers, good dancers, good swimmers. But if they're improperly coached, they can have ruined shoulders, ruined spines, ruined legs.
[41:47] I think catching all this and getting the diagnosis early is really a very new thing. When I started in this almost 40 years ago, people were rarely diagnosed before their third or fourth decade, and then sometimes their diagnosis was postmortem because nobody knew that their aorta was stretchy. The broader understanding and awareness is good. I know way back with the Ehlers-Danlos National Foundation, we sent a CD to virtually every emergency room in the country saying that if this patient presents with an acute abdomen, don't just send them home with Maalox. It could be that their aorta's getting stretched out of shape or their spleen, and they might need emergent care. So that was a step in the right direction.
[42:42] And shows like yours are wonderful to just make people aware that these things are out there. Doctors always learn about infections and tumors and fractures, but how often in medical school do you talk about connective tissue disorders? And when you do, someone will usually say, oh, this is extremely rare. When I started in this, they said EDS occurred in like 1 in 750,000 live births. I see people every day with connective tissue disorders.

[43:15] Dr. Linda Bluestein: Me too. Because I know the look.

[43:17] Dr. Patrick Agnew: Yep. And all my residents know that — we're taught in podiatry that you can have a hypermobile first ray. And that's interesting, but why would just one joint be hypermobile? Let's look at some other joints. So every one of my residents knows the Beighton scale, and in every lecture I give I'll make everybody stand up and straighten their elbows out and straighten their knees and see if they go too far, because they might've never been checked. No one ever asked.
[43:47] So I think awareness is critical, and early intervention is highly beneficial. Let's start that with children. Now, in adults, sure — maybe your feet don't hurt. Maybe that's because you're not using them. That's one thing. You might be tired because your 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 a more 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 if it's as simple as recommending a particular shoe.
[44:36] But I think even in the absence of pain, an examination by a knowledgeable provider — whether it be an orthopedic surgeon, a podiatrist, a physiatrist, a primary care physician — someone needs to ask. I actually wrote a treatise for Special Olympics in the Virginia area too, many, many years ago. I was coaching a couple of different Special Olympics sports, and I noticed a whole lot of foot problems. As I wrote this thing to be disseminated to other coaches throughout the area — I think it went national at some point soon after that — the point was that 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 going to complain about a foot problem. 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 trisomy 21, for example, have very hypermobile joints — very much like someone with a connective tissue disorder.
[45:48] I don't know if there's a direct link to the collagen or what. I know that if you're just drunk, you tend to overpronate 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.
[46:06] But yeah, you need to ask, or you need to look and see if things appear to be functioning normally. And I'm always trying to define the role of the foot and ankle specialist in the overall health of the patient. I'm a foot doctor, yes, but I'm a doctor first, and I want the quality of a patient's life to be improved by my interaction with them. That's what I'm after. And if that means straightening a crooked toe so they can wear a particular shoe, cool. If it means putting them in the right shoes so they can walk a little further, that's a good thing. If it means something a lot more elaborate, like putting a whole bunch of bone anchors and stents in them — if it helps, good. But their quality of life improvement is what I'm after.
[46:55] And I think 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 atrophied and deconditioned, maybe their heart and lungs have become deconditioned from a lack of using their feet — maybe I can help with all that by getting out ahead of things. So I would say probably 100% of people who get diagnosed with a connective tissue disorder ought to have a foot examination.
[47:42] We've already done it with diabetes. Every American with diabetes probably has a foot examination, in most cases by a podiatrist. And consequently, the amputation rate has dropped precipitously. It's still way too high, which I blame mostly on people's diets and the easy access to food that's not very nutritious. But by examining people — just seeing a foot doctor once a year if you have diabetes — your chances of an amputation can drop by 50 to 90%. No magic tricks. We just catch little problems before they get to be big problems.

[48:24] Dr. Linda Bluestein: I want to make sure I heard you correctly, because it sounded like you said the chances of an amputation dropped from 50 to 90%, which wouldn't that be an increase?

[48:33] Dr. Patrick Agnew: Overall, it decreased by 50%. Overall decrease all the way up to 90% — a lot less amputations.

[48:41] Dr. Linda Bluestein: Decrease of 90%. Okay.

[48:42] Dr. Patrick Agnew: Yeah, up to 90% has been documented. And not because we're doing any magic tricks — we're just saying, that little callus right there, if we make an adjustment to your shoe, maybe we can prevent that from becoming an ulcer, getting infected, and leading to an amputation. So I'd like to see a kind of similar mindset regarding connective tissue disorders. There's certainly a risk of not using your feet like they should be used.

[49:19] Dr. Linda Bluestein: I want to come back to a couple of things that you said. First of all, I can already feel the emails coming in for the comment about the CD going out to emergency rooms, because most emergency rooms do not behave like they have ever received that CD.

[49:34] Dr. Patrick Agnew: It was a long time ago. It was a long, long time ago, obviously.

[49:39] Dr. Linda Bluestein: But maybe that needs to be revisited. I provide letters for my patients and clients that talk about the different things that they have going on as it pertains to surgery, anesthesia, emergency care, etc. But that is definitely something that would be great for emergency doctors to have more of that kind of information. I just, as soon as you said that, I was like, I bet people are going to comment on that.
[50:05] 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, yes, there can be some crossover things happening, but most of the time that's not the case. So I just don't want people panicking about that.

[50:25] Dr. Patrick Agnew: Yeah, please don't.

[50:26] Dr. Linda Bluestein: No, no. I've just learned that it's better to be proactive. And as much as we can say this person looks like they have hypermobile EDS and not vascular — none of us are perfect. So it's possible, and there are other reasons why a person can have an aortic aneurysm. So these are definitely very important things for everyone to have on their radar because they're life-threatening.
[50:59] But I want to come back to the foot and in particular to metatarsus adductus. Because I have a family member who has this and it's quite significant — a blood relative, so I probably passed it on to them — and it was not picked up as a child. So therefore this person is an adult and has this problem. They're not complaining of pain, but there are major calluses, significant foot deformity, and evidence 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? And then I would love to hear — if you did miss it in childhood, or if this is something that persists into adulthood — what are the conservative options? And when do you know that you need to do something more than conservative options?

[52:05] Dr. Patrick Agnew: One of my favorite topics. Thank you for segueing into that. Not selfishly, although I do have it. I suppose I could put my foot up here and show you what it looks like.

[52:17] Dr. Linda Bluestein: Go for it.

[52:18] Dr. Patrick Agnew: There you go. See how my fifth metatarsal base kind of sticks out? Pretty cool socks too, huh?

[52:27] Dr. Linda Bluestein: Very cool socks. Love the socks.

[52:30] Dr. Patrick Agnew: That is because my metatarsals are adducted. They point in. And actually, one of the things I talk about is that's really not entirely accurate, because if you take tracings of my metatarsals and compare them to another person's metatarsals, they probably look about the same. There's actually a deformity more in the midfoot at the tarsometatarsal joints and sometimes the midtarsal joint — maybe deformity within the cuneiforms and the cuboid. That's kind of a good thing because if I were to surgically treat it, it's a lot easier to operate on 2 or 3 bones versus 5 bones. That's a pretty esoteric point, but there it is.
[53:17] If you get the sheet on clubfoot from the March of Dimes, it'll say this is the most mild or the most common form of a clubfoot. I hate to call it a clubfoot at all because I don't think that's representative of what it is. A clubfoot is a serious deformity with metatarsus adductus, equinus, and varus of the foot — we call it talipes 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.
[53:53] I would prefer everybody call it midfoot adductus, but I could probably spend the rest of my life trying to make that change without succeeding. We're talking about maybe 1 in 1,000 live births documented versus true clubfoot, which is probably 1 in 10,000 live births. So a lot more common than a real clubfoot.
[54:18] And there's been an idea — mostly propagated by Dr. Lynn Staheli up in Seattle and his colleagues — that this goes away by itself. This goes back to an old paper 40 years ago where they took photocopies of kids' feet and their feet seemed to get better. The problem 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, 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 straightening themselves out, probably the subtalar joint overpronates, 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 an S — metatarsals going this way, midfoot going this way, heel going this way. It looks like they outgrew it where really they just acquired another deformity.
[55:34] Some of the old treatments of it actually caused this — like putting shoes on the wrong feet. When I was a child, they would just put shoes on the wrong feet. The foot would look straighter after that, but instead of actually correcting the initial deformity, they actually created a new deformity by causing this overpronation to compensate.
[56:07] So it doesn't go away by itself. I know this because every day I look at my own feet, and every day I look at other people's feet who come in with bunions, or a fractured fifth metatarsal, or an unstable ankle, and they come in with particularly problematic hammertoes. And I look at the rest of their foot and see, huh, they've got metatarsus adductus. Or maybe they're a patient with diabetes or some other neurologic disease and they have an ulcer at that fifth metatarsal. A lot of people have dysfunction of their peroneus brevis tendon, which inserts right on the base of the fifth metatarsal. It gets stretched out of shape, it flips over the fibula and gets torn, and it doesn't heal well because it's a tendon — mostly fibrous material, not much living cells in there. So there are lots of pathologies associated with this.
[57:04] So what do we do about that? Well, we quit telling people they're going to 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 going to outgrow it — which is really what the parent wants to know. You can say, well, according to some papers, a significant percentage — it goes away by itself. But I would challenge the scientific quality of some of those papers.
[57:39] 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. Probably for life. After that, it winds up being choosing shoes that accommodate this deformity.
[58:04] Now, I've kind of looked back at my life personally, and maybe the silver lining is that I was pretty good at martial arts — that fifth metatarsal makes a good thing to kick somebody with. It kind of maybe pointed me more toward extreme sports — skateboarding, hockey, ice skating, and surfing — rather than court sports or field sports. It doesn't seem to be an impediment to any of the kinds of sports that I chose. Breaking my ankle — that was just doing something stupid with martial arts. But I was set up for it by the shape of my foot. So maybe a lot like connective tissue disorders, it can be a superpower too, but too much of it can certainly be disabling.
[59:07] Some people do need surgery for it. It is a complicated surgery. 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 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 5 metatarsals, move them over a little bit, put some screws in them, and it'll look better. But anytime you move a metatarsal in the transverse plane, there's a chance you're going to move it in the sagittal plane and the frontal plane too. So there are lots of opportunities to undercorrect, overcorrect, create new deformity up or down or sideways. And you've got 5 chances.
We tell people that in this particular operation you've got a 1 to 2% chance of an infection or a healing problem, and maybe a 10% chance that you're not going to be glad you did this — 90% of people who have this procedure are glad they did. But if you take an example like a bunion operation, and then you're doing 5 of those — does your chance of complications go up to 50%? I don't know. But there is a real chance of complications with that kind of surgery.
[1:00:35] There is the opportunity to open up the medial cuneiform and close down the cuboid — a thing called a Grumbine-Fowler — where you just take the whole foot and swing it over a little bit. Those bones tend to heal a lot better. They have a lot more cancellous bone, 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 deformity — and getting the foot to swing over a little bit.
[1:01:16] So there are surgical procedures that are beneficial and there are little minimally invasive patch-type procedures. If your biggest problem is that bump sticking out of 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 can form there. We can do a bunion operation if the biggest problem you have with the midfoot adduction is your first metatarsal sticks out and you've got this painful bunion — we can fix that bunion. But if we don't fairly aggressively address some of the midfoot deformity, we're probably not going to get a satisfactory reduction, or we may set you up for a more likely relapse.
[1:02:05] So those are some of the consequences of midfoot adduction. 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. I think that is an absolutely false statement. And who cares what most kids do? You want to know if your kid is going to outgrow it.

[1:02:28] Dr. Linda Bluestein: Right. And if there's something you can do to reduce the risk of them having a problem as an adult, then you're going to want to do that. Like you said, we all care about kids, and especially our own kids.

[1:02:35] Dr. Patrick Agnew: All I have to do is get the parents to take off their shoes. I'll say, okay, you brought in your kid because they walk kind of funny. Let me look at your feet. And sure enough, 90% of them have the same thing their kid has. They probably told you that your kid's going to outgrow it. I'm going to tell you that's unlikely, because here's what's going on with your foot.

[1:02:59] Dr. Linda Bluestein: Okay. And I want to come back to something much more mundane than medical metatarsus adductus — or midfoot adductus.

[1:03:08] Dr. Patrick Agnew: So I got a convert!

[1:03:15] Dr. Linda Bluestein: One down. How many left to go? So you've mentioned already footwear, and you've also mentioned orthotics. I have custom orthotics. Probably a lot of people listening have custom orthotics. Some people, of course, are just going with over-the-counter orthotics. I want to 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 or midfoot adductus that we were just talking about. 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?

[1:03:49] Dr. Patrick Agnew: I'm so glad that you asked the first question the way you did. A lot of people say, well, what kind of shoes should I buy? And they want to know what brand. And I can never really answer that because 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 them a day, what kind of fun stuff you like to do, what your job demands. So many variables.
[1:04:17] What I often do recommend is characteristics in a shoe. 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 little old ladies with gnarly feet to him and say, hey, get them a good running shoe. 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 see how it's constructed on the inside. I love working with people like that — really inquisitive people who are trying to understand how things work, not just sell a product.
[1:05:02] So I can't recommend a particular shoe and I can't even recommend too many characteristics in a shoe to such a broad audience. But what I would say is it's a good idea to buy your shoes at the end of the day because 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 of hours at home on carpet. And it's a good idea to have purpose-driven footwear for different times of the day and different activities. You might need a particular shoe in your office because it's got hard laminated floors. You might need an entirely different shoe when you go for a walk. You definitely need a different shoe if you're going to play tennis or basketball or something. So it winds up being probably a whole prescription of a variety of different types of shoes.
[1:06:13] To orthotics now. Podiatrists at large — I might get a bunch of emails 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 natural state and then try to influence the function in a positive way. We have 3D scanners, 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 them to give us different pressure designations, slow-motion photography. Gait study labs are fascinating places. But as we talked about earlier, the foot's a complicated organ. 1 out of every 4 bones in your body is in your feet, and thousands of little ligaments and things. There's a reason there's such a thing as a foot specialist — it's not a simple organ.
[1:07:20] Hand specialists might seem a lot cooler than us, but let me see how many people can walk on their hands. Your feet go maybe 4 times around the world in a lifetime — about 1,000 miles a year, 80,000 miles total, about 4 times around the world. That's how it adds up. It's a pretty good machine if it holds up. A lot of them don't hold up, so I have a job.
[1:07:46] Having the ability to positively influence that motion by 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. The good news is a whole lot of people can get away with an over-the-counter orthotic. Should it be flexible? Should it be rigid? Should it be padded? Should it be a little higher or lower? I think there's a lot of experimentation that goes into that. I certainly have a lot of patients come in my office with a bag full of orthotics and say, out of the 30 orthotics in my bag, this one's probably the best.
[1:08:38] But here's where it gets a little more complicated. I get kind of mad at the Good Feet Store. I hope I don't get in trouble for mentioning a brand name, but they've got a very clever upsell. People will go in there with a foot problem and they'll wind up with $400 worth of three pairs of orthotics. And I get kind of mad because that's not always necessary. I think it's sometimes just a clever sales tactic. But an orthotic — sometimes just one simple $40 or $20 orthotic is good for a particular condition, a particular patient.
[1:09:38] In people with connective tissue disorders, I think maybe they do need a couple of different orthotics. I saw a brilliant presentation at an old Ehlers-Danlos conference where this guy talked about how a lot of people with EDS kind of front-load their week — they do all their physical stuff early in the week because they know they're going to 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 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.
[1:10:21] And maybe you can tolerate a more aggressive, more rigid, more form-fitted orthotic during the more active parts of your day. But then later that same day, you might want to take your shoes off and walk barefoot — but I'd submit that's a bad idea because your feet are really not up to that task. 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 — it doesn't have to be anything fancy or custom-made, just something to help resist some of that extraneous movement that irritates joints and creates chronic inflammation and maybe makes you more inclined to sprain or twist something.
[1:11:08] So the answer to orthotics is — I don't know the answer, but it's a complicated topic, and I think it's worth pursuing. The concept that a foot with hypermobile ligaments is going to put up with the demands of modern society is unrealistic. Just average people walking around on concrete in Virginia Beach shouldn't do it barefoot. And some shoes are basically barefoot — they're really not doing anything functional to help except maybe keep a thumbtack from sticking in your foot. Often not even that. A lot of people walk in and say, why does my foot hurt? Well, there's this nail sticking in it.

[1:12:00] Dr. Linda Bluestein: That's not good. And I'm so glad you brought up barefoot because that is such a huge movement, right? There are even barefoot shoes and that kind of thing. I've had so much trouble with my feet, but now my feet are very happy, knock on wood. I pretty much always have some kind of shoe on. I might have — I'm going to mention a brand too — I wear Oofos inside the house, which have a nice cushion.

[1:12:28] Dr. Patrick Agnew: Those are pretty cool.

[1:12:28] Dr. Linda Bluestein: Yeah, 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 wear them inside their house. Otherwise, I have other brands of shoes with my custom orthotics that I'm wearing, and my feet are much happier now. But of course there are these people who are super passionate about how important it is to be barefoot. So could you just — as our final thing before we get to our hypermobility hack — say a little more about what your thoughts are about being barefoot for people with EDS?

[1:13:02] Dr. Patrick Agnew: Yeah, I'm not a fan. I get the concept. We're born barefoot, we were designed to be barefoot. All right. 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 can't unsee that.
[1:13:28] The idea of barefoot walking and barefoot running making your feet somehow stronger and more durable — there may be some truth to that, but you can also beat your hands on concrete to make them a better punching tool for martial arts. Will it be a useful hand afterwards? I don't think so. You can beat your feet up in order to try to make them tougher, but I'm not sure that the risk-reward benefit works out well. And I've seen so many people with injuries sustained from deliberately trying to do barefoot running.
[1:14:12] Now, there may be places where that's necessary. We're the home of Naval Special Warfare here, at least on the East Coast. We have all these warriors who sometimes have to run around in wetsuit booties, and their feet maybe need to be beaten into submission. But for the average person, I don't think it's a good idea.
[1:14:30] The other aspect of that is — there was an old concept that when you walk in sand, your heel sinks down. And they came up with these things called earth shoes that had a negative heel — the heel was lower than the forefoot — and the concept was that this is how you're supposed to walk. Well, no, you're just not supposed to walk on sand very much. You're not a semi-aquatic animal. I am — I surf every day. I walk in the sand every day. But I do it a limited amount because it'll ruin your Achilles. Which brings me to one last thing I wanted to mention — and maybe this will be the hack.

[1:15:26] Dr. Linda Bluestein: Okay, go for it. You can make this the hack. That's perfect.

[1:15:31] Dr. Patrick Agnew: Equinus. So one of the things that surprised me, in people with connective tissue disorders who are bendy all over their bodies, they can still have a tight heel cord — a thing we call equinus, named after equestrian horses. Horses walk on their tiptoes. A horse's hoof is just a big toenail. And that's cool for horses, but it's not so good for humans. If your ankle can't dorsiflex as far as it's supposed to, other things are going to have to make up for that — the midfoot joints, the knee, the hip, the back. So it's important to recognize that. It's important as a part of every foot examination, on just about any disease process, to make sure that the ankle can dorsiflex enough. And if it can't, something might need to be done about it.
[1:16:24] So here's a crazy hack for people with Ehlers-Danlos syndrome and other connective tissue disorders. You might need to stretch, but just one thing — just that Achilles tendon. And that can be a little tricky. It should probably be done with a shoe on, with an 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 push-up, because otherwise you might just slew your foot out and bend your foot, and you're not really working on a heel cord. It wouldn't even be a bad idea to get with a physical therapist and have somebody show you how to do it right in the first place.
[1:17:01] Dr. Patrick DeHeer in Indianapolis is probably the most well-versed person on deformative equinus. He has detractors who say, well, a whole lot of professional athletes have very tight heel cords. And yeah, maybe it is again a deformity that can be a superpower — something that might make you jump higher to stuff a basketball. But I do know that a whole lot of pathologies are associated with a tight heel cord. And it is just a surprising thing that happens to people with connective tissue disorders. The reason it happens, I'm not sure. I think it's sometimes a compensation thing — 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 contracted.
[1:17:56] Lots of people weightlift and they'll do toe raises to try to strengthen their calf muscles and make them look nice. But if you don't also strengthen the balancing muscles in the front of your leg, you'll wind up with an imbalance. So equinus is something to be aware of and to look for in anybody with connective tissue disorder.

[1:18:23] Dr. Linda Bluestein: That's super interesting because I have had, probably for 8 years now give or take, an Achilles tendinopathy on the left side, and 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 hike. And I was already quite sore and I figured out how to use some tape and some topicals to cover up the pain. Not a good idea in hindsight.

Dr. Patrick Agnew: Risky.

[1:18:51] Dr. Linda Bluestein: And I went on the hike anyway, and I had pain that woke me up from sleep for months after that. Then it got back to kind of the baseline, but I kind of forgot. 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 it sounds like maybe I need to get back to doing that, even though I know they're not the exact same thing by any means. But it sounds like that'd be a good idea.

[1:19:19] Dr. Patrick Agnew: Yeah. I think you figured it out. And there are other things you can add to that — other little hacks, like maybe wearing a splint while you're sitting doing work or watching TV at night. Some people can even sleep in them. These things are like $35 on Amazon.

[1:19:35] Dr. Linda Bluestein: I do have one.

[1:19:36] Dr. Patrick Agnew: It makes a big difference. Nice.

[1:19:37] Dr. Linda Bluestein: I do have one, and I slept in it for a little while, but then every time you get up to go to the bathroom, you have to remember to take it off. It hurts the relationship.

[1:19:45] Dr. Patrick Agnew: You can hurt somebody with that thing too.

[1:19:51] Dr. Linda Bluestein: I don't know where I put it. I'll have to — I have a whole massive box of all of my braces and splints and various different devices like that, as I'm sure most of the people listening right now do. So I will definitely re-explore that. That's a good idea. Even just, like you said, putting it next to your keyboard or your remote control so you remember to put it on when you're sitting there.

[1:20:13] Dr. Patrick Agnew: Dr. DeHeer also invented one that you can use just for a certain period of time each day, almost like a therapy device, because it is really hard to keep it on all night. That's a problem.

[1:20:29] Dr. Linda Bluestein: What kind is that? That's a specific one?

[1:20:32] Dr. Patrick Agnew: Yeah, it's an equinus splint. I can't remember his brand name for it, but if you look up Patrick DeHeer and equinus splint, it'll be pretty easy to find.

[1:20:43] Dr. Linda Bluestein: Okay. I can put that in the show notes so people can find it if they're like, oh, that sounds interesting.

[1:20:49] Dr. Patrick Agnew: Sometimes I have to operate on it. Sometimes I have to surgically lengthen it because it's just permanently contracted. But it's a thing not to miss — it's part of this whole picture.

[1:21:01] Dr. Linda Bluestein: Yeah, definitely. Okay, well, thank you so much for all this great information. It's so fascinating how complicated the feet are and how it affects everything. It affects the stability of probably every other joint in the body because that's our base of support. So I think the feet are underappreciated for sure.

[1:21:19] Dr. Patrick Agnew: I think sometimes some of the autoimmune characteristics of connective tissue disorders — which may not actually be autoimmune disease — might more be because of chronic inflammation from chronically subluxing joints. And the foot's probably a good source for that. So there are wide-ranging implications of malfunctioning feet. Let's get at them early, do something about it. Thank you so much for the opportunity to talk about it. This has been fun.

[1:21:51] Dr. Linda Bluestein: Yes, absolutely. And for people who want to find out more about your incredible work, where's the best place for them to find you?

[1:22:00] Dr. Patrick Agnew: Well, they can contact my practice, Coastal Podiatry Group. I'm the chairman of the department at Eastern Virginia Medical School, now the Macon and Joan Brock Old Dominion University Virginia Health Sciences. We have the longest name of any medical school in the world.

[1:22:17] Dr. Linda Bluestein: That is a really long name. Yeah.

[1:22:20] Dr. Patrick Agnew: We still call ourselves EVMS a lot, and that's not a great way to contact me because I'm never in my department chairman office. I'm always over here trying to take care of people. So Coastal Podiatry Group is my private practice. You can also get at me through the Ehlers-Danlos Society — they have links to connect to me and some old YouTube videos and things from lectures I've given. And call me. I get calls from all around the world about this. I try to answer all of them. Sometimes it takes a little while, but I try to answer all of them.

[1:22:54] Dr. Linda Bluestein: The need is great. The number of people that are suffering from these conditions and really struggling to get good care is just mind-boggling. 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 on their own. And then they may or may not 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 joining me on the Bendy Bodies Podcast today.

[1:23:30] Dr. Patrick Agnew: Well, surf's not very good today, so this was fine. It was great last week — we had a hurricane go by. And thank you so much for providing a platform to get the word out. That's a wonderful thing that you're doing, I think.

[1:23:41] Dr. Linda Bluestein: You're very welcome. And I didn't realize that I was competing with surfing — not today, though. Well, thank you so much. Really appreciated this conversation.
[1:24:48] 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.
[1:25:12] 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've got your back. Check out my coaching and mentorship options on the services page of my website at hypermobilitymd.com. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, or LinkedIn at hypermobilitymd. You can find Human Content, my producing team, at humancontentpods on TikTok and Instagram. You can find full video episodes up every week on YouTube at Bendy Bodies Podcast.
[1:25:44] I'm so glad you're enjoying the Bendy Bodies Podcast. We love bringing on guests with unique 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 bendybodiespodcast.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.