Podcast Episode No. 48: Lymphoedema - A swell diagnosis Part 1

Welcome listeners to A Swell Diagnosis, a podcast about a condition called lymphedema with Dr. Debbie Geyer and myself, Robbie Blackwell. Before we start discussing our topic today, I'd like to share a little bit of information about my co-host Dr. Debbie Geyer. Debbie's been a general practitioner for over 10 years here in Sydney, Australia. She's a medical advisor to the Australasian Lymphology Association, the peak professional body for education, research and management of lymphedema in Australia and New Zealand. On a personal level, Debbie has been living with lymphedema herself for more than 15 years, having been diagnosed with primary lymphedema as a young adult. Hi, Debs. Hey, thanks for inviting me, Robbie. But I probably should introduce you now. So Robbie is a lymphedema therapist and occupational therapist, and she works as part of the alert team at Macquarie University here in Sydney also. And this alert team was recently recognised as the Lymphedema Centre of Excellence. I think Robbie, you and I first met when we started working together on the committee for the Lymphedema Support Group, New South Wales. So that's kind of our background there. Number of years ago, you were president for how many years? Oh, let's not go there. So it was such an honour to be asked by Gary Bain, otherwise known as the Wound Guy and patron and friend of the Lindsay Leg Club to do a podcast to share our knowledge of this condition, lymphedema, and how to best manage it. So, I think in this podcast, I think we're going to call it a double episode, we're going to address some of the frequently asked questions about the condition and that's sort of things like what is lymphoedema and just because I have legs, my legs are swollen, does that mean I have lymphoedema just because of the swelling? So, yeah, we'll cover that. Great. And in our second episode of A Swell Diagnosis, we'll focus on questions like how is lymphoedema treated and why is it important to treat a condition like lymphoedema or chronic edema? And where can I go for help? Nice. So Debs, when you're speaking with patients that have chronic edemas, how do you tend to explain the lymphatic system to your patients? Because it is an interesting little system that tends to be poorly understood, I guess you could say. Yeah, yeah. I think that's really true. It's one that many people don't know about or haven't really heard of. And certainly, I look at the whole circulation when I explain it. I say, well, how does blood move around the body in general? And so our heart pumps our blood out with the heart, sort of the arteries, and it sort of gets it out to all our fingers and toes and everywhere in the body. And then it comes back to the heart and it comes back via two systems, the veins and the lymphatics. And I think that's what people often forget. They just think it's the veins that everything comes back by. Some of that fluid actually leaks out of the blood vessels into the tissue space. Exactly. And so this lymphatic fluid is very protein rich and full of infection-fighting cells. And that's actually, which sort of makes sense because those lymphatic vessels get connected back to lymph nodes. And we know that like, you know, if you have a sore throat and a tonsillitis or something, you know, you get your lymph nodes get swollen because that's the centre where they're fighting the infection. So that's kind of the background of that system. And I think explaining how it sort of works is using analogies is really helpful. We were chatting about this the other day. Yeah, so it was actually Gary Bain shared a great analogy with me a couple of months ago that the whole fluid system is a little bit like a bathtub. So we've got a water spout with a steady stream of water coming into the bath and we liken that water spout to that fluid leaking out of our blood capillaries and into the tissue space. So we can sort of liken the tissue then to the bath itself, the vessel where the water goes. We also have a plug hole draining water out of the bath. And we liken that drainage system, the plug hole, to the lymphatic vessels draining fluid out of the tissue and taking it back towards the heart, back to become part of blood circulation again. Yeah, no, that makes a lot of sense, definitely. So I guess the ideal scenario, thinking about the bath analogy, is that the amount of water coming into the bath, hopefully, is less than our drain is able to cope with at any given time. And if the amount of water coming into the bath exceeds what the drain can drain away, then we'll run into trouble. So the bath will slowly start to fill up like our tissues can fill up with fluid. And that's, you know, the bath overflowing is a little bit like when your limb begins to swell. Yeah, that kind of makes sense. Yeah. And I guess, you know, it's how much is actually how high pressures are coming in and how much water is actually coming in versus the the actual escape factor and is it blocked? You know, if you've got all that hair stuck in the drain, is it gonna slow down how it gets out? Exactly, yeah. So I guess we can now talk a little bit about lymphedema and where does lymphedema fall into this analogy? And so lymphedema really is swelling that results because the drain itself is blocked or damaged and the water can't get away quickly enough, even when the amount of water coming into the bath through the spout is relatively normal. Yeah. So, I mean, I guess there's lots of different reasons why someone's, if we use the term plug hole or lymphatic drainage is actually impaired. And I guess some people are born with drainage systems that don't work well, and that would be classed as primary lymphedema. Yeah. And it doesn't always show up straight away at birth. It could come on later in life and become, you know, like myself, I guess, wasn't sort of till I was 20 that it really developed and yeah and but sometimes actually in utero actually during pregnancy as the blood vessels and the lymphatic vessels are developing they can be malformed and therefore not enough of them yeah not enough or too many exactly yeah it's just the system is just not not functioning properly because it never never developed in the first place um and and for some people that actually doesn't doesn't take effect it's almost like if the pressure, the tap filling into the bath is at a nice slow trickle their whole life, then it never actually, we never notice that the plug hole is not working properly. Underlying plug hole issue. Exactly. And it doesn't show up until you... And sometimes it's like people, you know, maybe in puberty or times of pregnancy or later in life, when they're having other, you know, high blood pressure problems, things, you know, other treatments put on medications, maybe those are the things that kind of trigger it. But actually the problem was an underlying defect in the lymphatic system. And then there's the other type, which is the secondary lymphoedema. Do you want to join in? Yeah, sure. So secondary lymphoedema is where the drainage system become damaged or impaired sometime throughout the person's life, usually with a precipitating event. So a lot of people will have what we call a secondary lymphoedema after they have a a diagnosis of cancer and have treatment for cancer, such as lymph node clearances, where they take the lymph nodes to test them for disease. Radiation therapy for cancer is another cause of lymphatic impairment. There could be a trauma, trauma to a limb, in a car accident or other sorts of burns, exactly. Or infections themselves, so. Yeah, I mean, some infections can be really big and quite damaging to the lymphatic. Yeah, so they get in and compromise the integrity of the vessels themselves and stop them from being able to drain effectively. Yeah. Yeah. So, Debs, if you had a patient come into your clinic and you suspected that they may have lymphedema, what are some of the signs? What are some of the things you'd look for and test in that patient? Yeah. Okay. So I guess when I'm sort of looking first, obviously there's, you know, whether I can can actually see any swelling or not. And I guess you look at the actual shape of the leg and whether you can sort of see the shape of the ankle bones and things like that. And then you sort of press on the swelling and see there's people talk about a sign called pitting, whether you actually press it and does it indent. And I'm sure all of us have been out walking all day and then go, oh gosh, my legs are a bit swollen or we've been on a flight and said, oh, we don't fit back in the shoes and you press and you can sort of push it down and make a dent. And usually that means there's lots of proteins, fluids sort of sitting there or other type of fluid that could be there, but it doesn't tell us exactly whether that is lymphedema or not, because the longer the fluid sits there, the less likely it is to actually pit in. So it's not a diagnosis per se, but it's definitely something I look at to try and work out. And another one is something called a stemmer's sign, where I actually look at the area of skin in front of, if we're talking about feet in front of the second toe and see whether I can actually pick it up because this is really hard without actually just doing it on myself. I just want to show Robbie on my hand or my leg or something like that. And you guys can't see that, but really when you try normally the skin, you should be able to sort of lift it away a little bit. And when you've got, you've pinched it up. Yeah, and when you've actually got swelling there, you can't do that at all because it's so, so thick that you can't lift that up. And I guess that's the other thing when I'm actually feeling the area for the stemicide, I'm also looking at the texture and how the skin feels in terms of thickness because certainly the lymphatics are also in the actual skin layer. So you can see if it's really congested with fluid, you get this thickening of the skin. And I certainly measure as well. I think that's an area that I often defer to lymphotherapists do this really well. Yeah, so using a tape measure and measuring a limb, comparing it to the unaffected side, That's if they only have swelling on one side of their body. Another technology that we do use frequently is called bioimpedance spectroscopy. It's also known as an LDEX or lymphedema index. And that can be an indication of just interstitial fluid and how much fluid is sitting in the limb. So there are some, you know, some ways that we can objectively look at. Yeah. At Macquarie in the program that I'm working at, We've recently started, well, in the past seven or eight years. It's been a while now. It's been a while, I said recent, but we've been doing them for a while now. It's an investigative tool called ICG lymphography, where we can inject a little bit of dye into a limb and actually see the lymphatic function in real time. So if we see a pattern that we call dermal backflow, it's an indication that the lymphatic vessels themselves may be compromised and the body starts to to compensate by using a different set of vessels. So that's another nice objective way of determining whether a patient's lymphatics are impaired or not. So good as a therapist as well as as someone living with lymphedema to be able to see that in action. It's really really helpful. It can guide management as well so that's really helpful. So that leads us to our next question. So let's say my legs are swollen, does this mean that I have lymphedema? The short answer is no. No. That doesn't necessarily mean it but I guess there's lots of things that can lead to having swollen legs and it's not necessarily because the lymphatic drainage is impaired and I think often there's other sort of multifactorial, there's multiple things that can contribute to having excess fluid in someone's legs. So if we go back to that analogy of the bathtub, I guess a lot of people have swelling in their legs, not because their plug hole or their drainage system's impaired, but some people just have an excessively large amount of fluid leaking out of the bloodstream and into the bath itself. So, yeah. A hundred percent, and particularly looking like one of the things that comes to mind is when there's a lot more sort of fluid to deal with when you've got, for example, a heart's not pumping as well and there's a lot more, you know, I guess that's one of the things I always check for clinically. People think, do I just focus on the legs? No, I want to make sure I check people's blood pressure, I listen to their heart, listen to their lungs, make sure they don't have fluid building up in other areas, which might indicate that the problem is more than just lymphatic. And it explains why a lot of people with leg swelling, the first thing the GP will do is send you off to see a cardiologist. Exactly. It's like, what, but the problem's down there. No, it could be, yeah, a hundred percent. And some of the other things that we sort of look at is, okay, well, what's happening with the veins? You know, if someone's got a DVT, like let's think that through in the analogy and see if that's, you know, certainly that, that's obviously a serious one you wanna rule out quickly. And often I'm quite confident I don't think someone has a DVT, but I will still wanna do an ultrasound because the consequence of missing a DVT can be life-threatening, so a deep vein thrombosis, I should say, sorry, a blood clot, I didn't explain that at all, terrible, terrible. That's right, so the DVT can cause a buildup of pressure in the vein itself, and that buildup in pressure causes an awful lot of, excuse me, fluid to leak out into the tissue. For sure, for sure. And I mean, interestingly, there's other things that we forget about, like medications, that sometimes people can actually be started on a medication. classic example is like blood pressure, where they actually like a calcium channel blocker, for example, is a really common medication that in general practice we prescribe all the time. And often people come back saying, oh, no, I've got swollen ankles. And it's clear, I just changed them to another medication. And it's important that it stop it quickly, that we just go through and assess these things. But really that's because they're actually, it's causing more fluid to leak into the tissue spaces. And it's just overwhelming the plug hole. it's not actually something wrong with lymphatics in the first place, and it's totally reversible. And there's a few other medications to think about and some of the medications that treat nerve pain or some steroid medications that can contribute as well. I mean, there's a long list and I'd always say, discuss it with your doctor, never stop anything, but it's worth considering. Yeah, yeah. There are some other things also that can lead to that increase in fluid leaking out into the tissue. So terms like venous incompetence or venous insufficiency, they're terms that many of our listeners may well be familiar with and are another really common cause of the high levels of fluid leaking into the legs. Obesity, being overweight, can on its own be the cause of unusually high pressure from the water spout. Yeah, and we're seeing that a lot more lately. Absolutely. We're seeing high increases in that. Absolutely. inflammation, anything causing inflammation in the legs, so surgery or trauma associated with surgery, infections, wounds, stuck in the inflammatory phase. I mean I guess this is the body right, the body is trying to fix something, how else is it going to fix it other than bringing in fluid which carries the infection fighting cells, the cells that are going to fix the problem, it's got to get there. It goes into healing mode and in healing mode comes fluid. Yeah. So it's important then to consider those things that could be going on. Yeah. And what about gravity? Gravity. Gravity is swelling's greatest enemy. Yeah. I mean, that's what you always talk about people saying, oh, I need to go home and put my legs up. Exactly. It's like after a long day walking around or standing, you know, particularly people working in retail standing all day, you know, their legs are going to swell by the end of the day. Whereas someone that's on their feet all day, but moving around a lot more because that's then the muscles and everything are pumping and moving, it sort of drains a bit better. The classic one is sitting on a plane with your legs hanging down and you don't get up and walk. That's really bad for the gravity. That fluid in your legs, it's actually, it's got to make its way all the way back up to your heart. Yeah, where it's an uphill battle. That's right. So diagnosis of leg swelling, it can be complicated and often the cause of swollen legs can be multifactorial. So in some cases we might diagnose swelling as a mixed form of edema, meaning the person may have a slightly higher pressure from the bath spout, coupled with a bit of a blocked plug hole. So in that scenario we're really going to notice an increase in fluid in the legs. So not all leg swelling is caused simply by blockage or obstruction to the drainage. In some cases, we have so much fluid coming into the bath from the water spout that the drain just can't keep up. Not all leg swelling is diagnosed as lymphedema, but I think the message we want to send here, Deb, is regardless of the cause of leg swelling, all leg swelling should be addressed and managed due to some of the secondary effects that that swelling can have on the tissue in our legs and generally just the health of our legs. Yeah, for sure. So I think that's kind of a good place to stop really and sort of discuss that really our next episode will want to actually dive into a bit more about the way we manage and treat the leg swelling and why it's sort of important to address those issues and bring it under control. Yeah, we'll also provide some useful information on where you can go to get help for those people that are living with lymphedemas and chronic edemas. Well you and I can talk about swelling all day clearly so we probably should wrap this one up. Great and we'll come back in episode two and talk about management. That's the fun part. See you then.