Podcast Episode 49: Lymphoedema - A swell diagnosis Part 2

Welcome to episode 2 of A Swell Diagnosis, a podcast about lymphedema with Dr. Debbie Guyer and myself, Robbie Blackwell. In this episode, we will be focusing on a number of different questions, the first of which is, how did we manage this condition? Yeah, we talked all about what it was and why, so I guess now understanding what actually is, we talk about it as best practice, like what's, you know, the best practice treatments. I think there's a lot of information out there and it can be really confusing as to what all the right different treatments might be. And I think as we go, we'll sort of give some tips on how to work out where it's the right place to get treatment. But I guess the types of main strategies that we look at is to actually move the fluid out of the leg. We need to look at how we compress and move that and also how we use the body's natural pump of exercise. And then looking at things like massage we hear a lot about that and then lastly concentrating on on taking care of the skin which is just so important and I think people people miss that. That's right it's a really critical part of managing this condition is taking good care of our skin. We'll also talk in this episode about why why is it so important to manage any sort of long-term chronic swelling whether it's a lymphedema where it's our plug hole bringing the old analogy in where our plug hole and our drainage system's not working properly or whether it's a chronic edema where we just have a lot of fluid leaking into the tissue from the leaky spout. So I guess what would be the most effective bang for buck way of managing swelling? Yeah look Debs it's a really good question and when I talk to my patients about best practice management of chronic edemas certainly the first tool that comes to mind is compression. Compression looks like a lot of different things to a lot of different people and I guess today one of the things we want to do is give an overview of the different types of compression and where the different sorts of compression may be appropriate for different presentations of swelling. Compression certainly of our four main strategies of compression, exercise, manual lymphatic drainage and skin care, compression really is the, you know, it's the mainstay. It's the one that we really, really want to get right and why it's so important to have a good relationship with a therapist who's trained in prescription of appropriate compression garments to manage different types of swelling. And I mean, just taking it back to basics, I mean, when, you know, if someone sprains their ankle, the straightaway, the first aid is really you know you want to elevate it you want to ice it and you want to compress it you know you want to put a bit of a bandage on that to stop the swelling blowing out so it's not like it's a foreign concept no no it's not and i think a lot of people tend to think as soon as you mention the word compression to them their minds jump to those awful white ted stockings now i know they have their place i absolutely know they have their place but i think people think of compress think you're going to put them in compression and they think that's what they're they're going to have to wear. And in so many instances, the fit of those white compression stockings is not appropriate and actually potentially can do more harm than good, especially where you've got a leg that doesn't, doesn't look like an air hostess's leg. Yes, that's very, very accurate. Yeah. So in terms of how we structure therapy for people with lymphedema and chronic edemas, you may have heard of people having bandaging. and that's certainly a form of compression. Do all people go through bandaging programs? Well, no, not all people really need to, but I guess the place of a bandaging program would be if the amount of fluid possibly indicated by the depth of the pitting in the limb, where there's a lot of fluid, we can put a patient into a pair of compression stockings that may stop the swelling from getting any worse, but it may not help. more like a holding. Absolutely. So the ideal scenario is that we maximize the size and shape of the leg before we prescribe compression and a really good tool to try to quickly and effectively decongest the leg or get as much fluid out of the leg as you can is to use compression bandages for a short and intensive period of time to maximize the size and shape of the limb before transitioning patient into a good compression garment that's appropriate size and appropriate fabric and appropriate class. Exactly all important things and that's where we you know there's no no one size fits all. That's right. But it's really interesting when you talk about this bandaging as a way to get someone into the holding it's almost like by doing that bandaging every day preferably or every couple of days each time you take it off it's like oh it's left indent it's like pushed a bit of fluid out and then when you put the bandages on again it's a little bit it's it's now like a little bit smaller and it'll be then each time you're incrementally bringing it down like it's not like it's getting tighter and tighter each time it's just that it's squeezed out fluid and yeah I mean it's just such it's actually a really rewarding experience I'm not gonna lie it is and it's um you know it's something that we that we regularly recommend however I would never put a patient through a bandaging program unless at the end of that program I had the intention of prescribing a compression garment that the patient can then use as one of the tools in their home toolkit to maintain the gains that you've made in the decongestive program. And the ultimate aim is to get fluid out of the legs and to keep fluid out of the legs to ensure that we're maximizing the health of the tissue within the leg. So yeah certainly compression is a really important part of our management of lymphedema but as you've said, it doesn't look like the same thing to everybody. There are compression stockings, different, you know, knee highs, thigh highs, different styles of compression stockings, but we've also got things called compression wraps that are sort of Velcro bandaging systems that almost change the world. Yeah, they almost mimic bandaging but can be put on and taken off by the patient themselves. And a lot of people find that they're an easier way to manage lower limb swelling than compression socks. I must admit, I really quite like them in the context of wounds, because I find when someone's got a bandage on, trying to pull a stocking over the top of it, it ends up rolling up the tape and the band, you know, and it all gets- That's right. Then you've got to start again. So I find with the wraps, it's actually a good way because it can help the bandage stay, the wound bandage stay in place. Absolutely. and also getting out the swelling at the same time. So yeah, winner. So, I mean, just to zone in on something you said before when we're talking about the different phases, it's almost like, do we call it a phase one and a phase two, or do we call it like acute management and chronic management, like short-term, long-term? It's a great question. So it's referred to often as phase one and phase two, or another way of thinking about it is phase one is an intensive phase where we're really working hard using compression and massage and other techniques to get as much fluid out of the limb as quickly as we can. And phase two, we then often call the maintenance phase, which is where we really try and empower our patients to take control of their own swelling and use the tools that they have in their toolkit to respond to what their body's telling them in terms of what they need specifically to do to manage. And so going back to compression, we often think of compression a little bit like medication in that everybody has their own optimal dosage. So dosage can look like, change in dosage can look like maybe one fabric might be slightly stiffer or stronger than another. But another thing that you can do to change dosage is how many hours in the day does your body need you to be in these compression garments to keep your swelling under control? And often with legs, it's a case of starting with the hours in the day when you're upright, because reflecting back on our first episode, we talked about the effects of gravity on leg swelling. And so generally being in an upright position is when you need to be helping the legs. Have that extra backup support. And I guess that's often, you know, one of the questions that I get just generally, not even related to lipidemia is about flight socks with people going on a plane and saying, okay, what is the level of compression that you might do? Because you're sitting with your legs down and, you know, for an extended period. And so having those stockings to prevent the swelling, but also prevent getting blood clots and things. So looking at that, and I often, you know, people get a bit thrown by all these numbers and MMHG, the millimeters of mercury and things like that. And so I quite like in lymphedema, we talk about levels and classes and things like that. And it's a better way of breaking it down. But again, you know, discussing that with your therapist to work out what's right for you. But it is, there's this understanding that there is sort of like level one all the way through to four. And so, you know, the way someone might feel or tolerate each level of compression is gonna be very different. And it's so individual to your condition. That's it. And without going into too much detail, I guess when we, going back to our analogy of the bathtub, if we have swelling in our legs because our lymphatic drainage is impaired in some way, that generally will necessitate a heavier class and fabric in order to control the swelling. And that's why flight socks, even though they're a light, stretchy sort of a fabric, they often are quite effective because usually when you're flying, it's more of a fluid into the bath issue and a light compression is enough to keep that under control. The assumption is the person's plug hole is working. Is working, so we're just gonna give it a little bit of a squeeze. Yeah, I like it. All right, so moving on to exercise. So exercise is- Ooh, yeah, I got that one. I'll take that one. I love a bit of exercise, and that's kind of the natural body's pump, I feel, like when I think about what's happening in the body with arteries, veins, and lymphatics, and then I bring in and say, okay, well, where are the muscles? The lymphatics, you know, they're all running between muscles, and so if you're actually looking at the muscles pressing up against the bone, by actually exercising, you're pumping those lymphatics, and it's almost like a caterpillar effect moving the fluid along. And so when we are sitting still on a plane with our legs sitting down, if we were to get up and walk backwards and forward and do some exercise, we would be shifting that fluid. And so I think that's just so important in the treatment of lymphoedema. And I think it's really, really sad in the history because we often used to tell people, no, no, don't exercise too much, you'll make it swell more. Whereas now we know so much more and we know it's in fact the exact opposite. That's right. But any exercise is good exercise. Exactly. you know, at the end of the day, you've got to look at the individual. And if someone, you know, I know that for me, jumping up and down is probably not as good as, as going for like a brisk walk. Um, but that's what I work out for myself. And that's really important that you test the boundaries and understand how your body responds. Um, but I, I sort of, we've obviously stuck with analogies and let's bring in another one, but I sort of, well, no, actually let's talk about running for a bus. That's, that's a classic one, right? You run for a bus, your muscles are pumping, they need oxygen and nutrients so that you can make the bus on time and your fluid rushes in to deliver all those oxygen and nutrients and then you get on the bus, made it, sit down with your legs dangling, then what happens? You're not moving anymore. They fill up with fluids. All that fluids that's rushed in, the muscles are now recovering, aren't they? They're now doing their little wind down and you've just got all that fluid sitting there. So if you actually did a cool down afterwards, like if I sat on the bus or stood up and just moved my legs backwards and forwards and kind of did a bit of stretches and got my calf compresses, that would actually pump that fluid out. So I think that's what's the most important thing to understand about exercises is cooling down afterwards and still keeping that movement happening, that flow. And so I guess that's the thing with wearing compression on the outside of your limb and you've got your muscle on the inside of your limb pushing out and they're almost pushing against each other. Your lymphatics are between those two forces and so they will be getting- It's got nowhere to go but up and- And the lymphatics don't have their own, they don't have their own pump like the circulatory system has the heart. The lymphatics rely on movement largely to propel the fluid in the right direction. I think under the category of exercise, I'd like to insert here swimming, because in Australia we're obviously huge fans of getting in water whenever we can. And the benefit of, for example, just walking in a swimming pool, like as simple as that, By standing in water, the deeper you go, the more pressure there is. So if I'm just standing in a swimming pool, there's automatically more pressure at my toes than there is at my hip, which naturally pushes the fluid upstream. So then I walk in the water, I've got my exercise pumping, I've got my pressure gradient from the water in the pool, and then I've also got the cooling, rippling effect massage in the outside of my limb. That's right, walking in water is a beautiful thing. Love it. For swollen legs. Yes. All right, let's move on talk about manual lymphatic drainage massage as another tool for controlling and helping to keep swelling under control. So manual lymphatic drainage massage is a manual technique that therapists and well anybody really can can use to and the aim of our manual lymphatic drainage is to help facilitate the movement of fluid from the limb back to the root of limb where it finds the lymph nodes to travel through on its way back to the heart. So connecting that pathway really. Yeah, that's right. So there are many different schools of thought on manual lymphatic drainage. And we've actually at Macquarie learned an awful lot about viable drainage pathways. We used to once believe that if someone had had lymph nodes taken from under the arm that that we should avoid that area. And what we've found is that actually 75% of people after a lymph node clearance continue to drain to something under that arm. So it's important to sort of not discount that. But really again, it's linking in with a therapist who's up to date with the latest in evidence and learning strategies from your therapist on how you may be able to massage your own limb to help facilitate the fluid movement out. But MLD on its own, I would really recommend MLD as a standalone treatment for swelling, but really works well as an adjunct to regular use of the compression. And I think it's also important to highlight that learning manual lymphatic drainage from a therapist that understands lymphedema and where the changes are to the lymphatic system, as opposed to someone who's trained in normal lymphatics and perhaps the beautician sort of drainage, red drainage pathways where there haven't been an interruption. It's just careful to look at that distinction and make sure that you're getting the right person for you. That's right. And really, I guess the proof is in the pudding, isn't it? So if you're having manual lymphatic drainage and you're investing the time and potentially money in having those sorts of massages, you do actually wanna see that it's having a benefit on your, there's benefit to you in doing that. And if there's not, then it may be as simple as changing the speed or the pressure of your massage to get a better outcome. but certainly it's worth asking the question if you're not seeing results because in a lymphedematous limb, after 15, 20 minutes of manual lymphatic drainage, effective manual lymphatic drainage, you really should start to notice a difference even if it's just softening of the limb. So that's an important part of our treatment. That's where compression pumps, sequential and intermittent compression pumps come into play and they can be used almost in place of manual lymphatic drainage. The idea of these pumps is that they mimic the effects that a manual lymphatic drainage gives and helps to sequentially shunt fluid up the limb towards the lymph nodes. So it's sort of, and I think the interesting thing about these pumps is, cause I know in the past they necessarily weren't sequential and that was part of the problem that was sending fluid the wrong way, but now that we know is so much more and we look at sequential, we're actually starting. People think, well, if I start at my fingers and push all the way up to my upper arm or I start at my toes and push all the way up, that's how it's done. But actually you need to clear the traffic jam. You need to clear the top pass first. And that's what's wonderful about these pumps. They actually do it in a specific order so that we're actually clearing the way so that we can then shift it from the toes all the way up. From the way just apart. Yeah. Exactly. Yeah. What about skincare? Dem, do you have any particular advice you give to people in terms of taking care of the skin? Moisture, moisture, moisture. No one wants to say that three times. I think it's just so important because the actual integrity of the skin is relying on that. Like that's our defense mechanism. That's how we protect ourselves. We're all covered in bacteria. I'm a once a day shower, I'll say that, but I'm gonna have bacteria there. That's what's natural to be on my skin. What's a problem is when I've got a break in my skin and then that first line of defense is damaged and the bacteria can go in. Exactly. And so when you've got someone with dry skin, we've all seen, you know, where you get that dry skin, you can always see, it's almost like having a desert cracking and you sort of think, oh gosh, it's like you can see the little gaps there. And so the slightest dryness actually creates that microscopically. And so you may not even actually cut or damage in the garden or anything like that. It's just straight up, the dryness is one of those things. And even just, you know, when you look to people they get cracked heels and you say, okay, this is definitely an entry point here, especially feet when we're walking around on things that aren't necessarily clean. So definitely taking care of that skin and having a good sort of barrier that keeps the skin soft and firm and certainly not breaking down. And people ask me all the time, what ingredients in moisturisers? How do I choose a good moisturiser? And at the end of the day, I think what's important is how thick the moisturizer is and that it's actually absorbing into the skin and I often say choose something that comes in a tube or a tub because if it comes in a pump it's probably got too much liquid in it that it's got to like get up through the pump and therefore it's much it sort of evaporates more easily and people say to me yeah yeah but I want moisture isn't that the whole point it's like no actually this is about putting a layer on that seals it in. And the thicker moisturizers you can feel. It's almost like the ointments. It's almost like, oh gosh, that's hard work to put on. But then you can see actually, and it does sort of soak in. And if I go back to that desert analogy, when you've got that really dry, hard ground, and it's cracking, and you try to pour water on it, it's just going to roll off, and it's just not going to do anything. Whereas if you give it a slow, good soak, and then the soil improves and it becomes healthier again, the next time you pour water on it, it'll just soak it up nicely and be all really happy and healthy. And so the better you moisturize, the more easily it is then that your body will be able to soak that up and that the actual surface of the skin is healthier. And when we look at the really tiny, tiny part of the lymphatics, they all run in the surface of the skin. So if you've got a healthier sort of that surface layer of skin, you're gonna have better working lymphatics and they'll respond better to the massage, respond better to the compression, everything. So compression, exercise, manual lymphatic drainage, skincare, they're really the four main strategies that we use. It looks like different things to different people depending on the stage and severity of their lymphedema, but ultimately most patients will end up with their own set of tools in what we like to think of as a toolkit. I guess the other advice is the importance of linking in with a professional that can help you to understand when and how to use the tools in your toolkit, but to equip you with the confidence that this is your body and ultimately you've got to be involved in coming up with a regimen of care that works for you and your body. 100%. And I think, I guess the next part here is just the why. Why do we need to do it? Like, you know, many people will say, well, let's just, you know, my limbs are swollen. I've just got swollen limbs. That's just how it is. Yeah. But I think, you know, one of the biggest things is that risk of progression of disease and infection. Absolutely. And skin breakdown, potentially then wounds and trauma. Exactly. And I think when you go right back to the beginning, we were talking about what is in lymphatic fluid, it's protein, and that really is a, I guess, that protein is almost a yummy snack for bacteria, and so the more of that that's built up, it's that infection will actually have a bit of a party there, because the lymphatics aren't working properly, they're not draining away, and they're not clearing, and the actual white cells in the body that fight the infection aren't able to work optimally, because the whole systems not flushing properly. That's right, we do see people with chronic swelling and much higher incidence of infections like cellulitis, so you're definitely more prone to those infections and then once you get the infection that then has a negative effect on the lymphatics themselves, so you're setting up this nasty vicious cycle. Yeah and so certainly obviously as a doctor I'm often involved in prescribing of antibiotics to treat these infections and you know I won't spend time going through the details that obviously, you know, speaking with your doctor about that, but certainly in lymphedema, we do notice that the infections like cellulitis tend to last for longer and often require more antibiotics, longer courses of antibiotics, rather than just using a week, it might actually be two or three weeks sometimes. And again, everyone's an individual and we look at each scenario, but certainly that's something to review and take into consideration. And the other types of infections that don't require antibiotics, but actually require antifungals. Like when you think about infections of tinea, particularly looking at between the toes and especially when people have swelling, they find it difficult to dry between the toes. Because I mean, let's face it, if you've got a little swelling in the toes, it's difficult to get between. I find it difficult to dry between my toes. But that's just so important because that's an area where you then can get, the skin can break down and that can be an entry point for the bacteria as well. So really important. So minimizing risk of infection is one really critical component. Minimizing progression of the disease itself is also really important. So in a limb that has a chronic edema, we get these secondary changes to the skin and to the tissue health, which over time can lead to things like skin fibrosis. Yeah, so it's sort of this thickening of the skin. It's almost like this really indurated kind of area. And you can even get bubbling of the skin and it always looks like sort of, I mean, that sort of toughening of the skin sometimes can look a little bit like, I guess, elephant skin for the lack of better scenario. But it's certainly that change is, it is possible to reverse it, but certainly is much more difficult at that stage. And the other part that sometimes people sometimes see is these little blisters appearing or lymphocytes and that's where we can get fluid leaking from. Fluid starts to leak, and then that starts to further break down the skin. So really, I guess the earlier we intervene to maximise tissue health and minimise the progression of disease and skin breakdown, the better the long-term outcome by far. 100%. Yeah, and then there's all those comfort benefits, psychological benefits, financial benefits of not then living with this chronic condition. Exactly, yeah, and we certainly do see when we survey people that definitely these these qualities of life really can be so dramatically effective. Yeah, so Debs, where can our listeners go to get help? Yeah, so certainly obviously we're speaking mostly to a UK audience and really there's the British Lymphology Society has a good directory, so if you sort of go to vbls.com backslash directories and another option is to actually email lymphedema.org and that's the lymphedema support network and sometimes they can point you in the direction of a local area but here's a good way to get access to a therapist at least you know that they're the type of therapist that is used to managing leg swelling or or limb swelling or any swelling really and that's really important to get that qualified person. So just one more time, thebls.com backslash directories. And I guess we'll probably get that put in the description below. Why not? Why not? Someone will do that for us. Yeah. So look, thanks all for joining in. We hope you've enjoyed the two podcasts on what is lymphedema and how to manage it and why you should manage it. And we wish you all the very best with your legs and your leg health. Thanks for having me.