Season 3 Episode 4 Transcript
Dr Kamran (00:39)
Robert, thank you so much for joining us. ⁓ It’s an honor having you here. And lymphedema, as you know, is a chronic condition. It’s not exactly an easy condition to treat. And ⁓ one of the ⁓ most common questions I get asked in my practice is, is lymphedema and what causes it and how can you treat it?
Robert Erkstam (00:44)
My pleasure.
Dr Kamran (01:02)
You have been dealing with this for a long time, obviously. So what I’d like you to do, if you would be so kind to tell us a little bit about your background, and then we can dive into ⁓ how you approach the diagnosis and treatment of
Robert Erkstam (01:17)
So a little bit about me, I grew up in Sweden. That’s where I was born and raised. to occupational therapy school there back in the 1900s. Graduated in 98 as an occupational therapist. I worked in Sweden for a couple of years ⁓ in different settings, mostly with traumatic brain injury. Then I moved to the United States in the year 2000.
Worked in different settings there, ⁓ long-term rehab, nursing home settings, short-term rehab, home health. And eventually about 20 years ago, started my own practice, self-care therapy. When we started self-care therapy, our thought was that lymphedema would be one thing that we could provide along with many other things. But it turned into being what we did, that those were the patients we got and the need was much greater than we had anticipated.
And it wasn’t long into it that we realized that we are becoming a lymphedema management center. And that is what we’ve been doing for 20 years. I could back up and say about how I got into lymphedema. That was while I was in the long-term rehab setting and I saw a lot of people with a lot of chronic swelling. And as
Part of my continuing education, I went and became certified in lymphedema therapy. Again, thinking it would be one tool in my toolbox, along with everything else that we do as occupational therapists, but it didn’t take long before that’s all I was doing because the need was so great. ⁓ So many people that were suffering with chronic swelling that just would not go away and all the complications that come with that, wounds and infections and and immobility and all those was really rewarding to actually have something that worked that we could do about that and improve their quality of life. So that’s kind of how I got into this field of lymphedema.
Dr Kamran (03:20)
Well, thank you very much for mentioning that because that’s really fascinating. is a tremendous demand for treatment of lymphedema. Unfortunately, there are not many ⁓ centers or physicians who ⁓ offer management of lymphedema. Now in Wilmington, North Carolina, we are, you know, having a hard time trying to find any clinics which would take our referrals for management of lymphedema. And it’s not just taking the referrals, it’s also knowing how to manage it. the management of lymphedema is not just be willing to manage it, you’ve got to have some basic knowledge of what lymphedema is. You’ve got to be able to make a diagnosis and obviously then offer the treatment. I was raised in England, you were raised in Sweden, I believe you also have socialized medicine there. We have socialized medicine, but unfortunately in America we don’t. ⁓ either you have to pay for it or insurance companies are going to pay for it, government doesn’t really pay for it. So then we went through the challenge of, know, who is going to pay for this? And this is a chronic condition, would, you know, there’s a lot of financial burden on the patients who are affected by it. So…
had so many of my patients were so excited to know that you were going to this podcast with us because they all have questions. Having said that, I’m going to ask you just to go ahead and tell us about what your knowledge of lymphedema is. How do you approach a patient who comes to your office to see if it is lymphedema or not and.
know, how would you treat it? do you approach those,
Robert Erkstam (05:06)
that’s a great lymphedema, there hasn’t been any really good imaging methods. There are some emerging now, but as far as diagnosing, it is mostly based on history and then on presentation. one way you could say that we approach it is to go through all the other things that could be causing swelling.
and narrow it down in that way. And of course, a lot of times people have multiple diagnoses we do want a thorough history and know what’s been ruled out, what’s been ⁓ tested for. ⁓ And of course, one really important thing is how long has that swelling been there? If it’s temporary, that is something that the body may be able to resolve by itself, but
That’s a big indicator if that swelling has been there for a long time, that means the lymphatic system is overloaded for some reason and it’s not keeping up. So without getting too complicated or could have swelling for two reasons. Either there is too much fluid for the body to process, for the lymphatic system to process, or the lymphatic system isn’t
processing the fluid fast enough. A lot of times we have a combination of the two. A lot of times when people maybe Google or search lymphedema, you might run into a lot of information about cancer. And that is because lymphedema can be a secondary effect of the treatment of cancer. So when lymph nodes are removed and also chemotherapy and radiation can all do damage to the lymphatic system.
That would be an example of where the system itself has been damaged and therefore it cannot move fluid fast enough. You could say there’s kinks in the plumbing. So fluid is backing Even when I went through training on lymphedema, was mostly focused on cancer related lymphedema. Like it often is, we get out into the real world and we start seeing real patients and discovered ⁓ and research is confirming this.
that cancer is not the most common cause for lymphedema anymore. is the two most common causes in America are venous insufficiency that then causes lymphedema. So it’s a secondary to venous insufficiency and also obesity is rated as one of the most common causes. So it’s secondary to something else. Cancer, of course, is also a big cause, but it’s…
the treatment of cancer that can cause lymphedema. And really any surgery, anytime we have to cut through the skin, we’re going to cut through lymphatics and it’s going to leave a scar and that can cause fluid to back up.
Dr Kamran (07:59)
I entirely agree with you. I spent a lot of my life, I was at MD Anderson doing mastectomies and one of the things we did, we took all the lymphatics, you know, because that’s where the cancer cells go, go from the breast to the lymph nodes. And when you remove the lymph nodes, you’re disrupting the lymphatics. And for the sake of the public, these lymphatics are almost like a spider.
Robert Erkstam (08:13)
Mm-hmm.
Dr Kamran (08:25)
webs, you know, they are extremely tiny. They’re almost microscopic and there’s zillions of them and they’re covering your legs. So every time you cut through or you disrupt it, things back up and that’s called lymphedema. And anybody who’s had a mastectomy or breast surgery, they all know that their arms do swell up and they have to have a specialist stocking to put on their arm.
If ever have to take a lymph node from the groin area for diagnosis, doesn’t matter how smart it is, I hate doing it because they will get a fair amount of drainage from the groin, which is the lymphatic. They leak and the leak is very hard to seal them. And of course it causes swelling of the leg. If you get any kind of infection of your leg, whether it’s ingrown toenail or cellulitis, I love the word use, you’re basically putting too much stress on your lymphatic system and the lymph nodes cannot drain as fast as they should and they get swelling. And one of the things I love you say that is the fact that venous insufficiency can cause lymphedema. It’s called secondary lymphedema. I’m a general vascular surgeon. finished in medical school in 1978. I feel like a very…
old man, but I was only 24 when I finished. So I like to say that I’m not as old as I appear. But by the same token, you know, we did get exposed to a lot of medicine. Some of them was not accurate. Like we, I found myself like any other physician, we all sometimes, are in an echo chamber in a bubble where we think either it is lymphatic or it is venous.
And if you are treating lymphatics all the time, you never think that it could be vein related. If you do veins all the time, you never think this could be related to your lymphatics. If you’re a cardiologist, we think everything is related to heart failure. If you’re a kidney specialist, every time you get swelling in your ankle, we think it is your kidney failure. And of course, if you’re a primary care physician, we think if you give them some Lasix, it’s going to cure everything.
I always have a smile on my face when I have a 30-year-old comes to my office and says, my leg has been swelling up. And I look at the rest of the drugs, they are on Lasix, which is a water pill. No 30-year-old should be on water pill. If you are 30 years old and you’ve got swelling of your ankles, the chances are you have venous insufficiency. Yet if you are 80 years old and you’ve got heart failure and kidney failure, you’ve got swelling of your ankles, doesn’t matter how big your veins are.
I’ve got to make sure the internist, the primary care physician, is very much involved in managing the kidney failure and the heart failure so the swelling gets better. But it doesn’t mean that they are mutually exclusive.
To me, it’s like playing cards. See all the cards you’ve got. This patient’s got a little bit of salt retention. He’s got a little bit of lymphedema, which is secondary to venous insufficiency. Then we’ve also got all these other issues. So you want to make sure the heart is functioning well, the echocardiogram is good. You want to make sure kidney function is good. Some medical condition cause swelling, as you know, for example, low thyroid. When you’re very low on thyroid, you get swelling around the ankle. It’s called pre-tabial edema obviously needs to be addressed. So medicine is one lesson I’ve learned since 1978 when I finished medical school. And the older I get, the more I realize it’s never just one thing. It’s a whole series of things. So if these are cards on the table and you’re trying to help your patients, you’ve got to see everything which is causing the patient’s swelling. And the more the list, the better physicians you are. And at the end of it, you’ve got to see
How can I approach this? How can I treat it? Which one of these is treatable and which one is not? And also make sure that the patient knows that you’re doing the best you can in your set of expertise to help this patient. But they should also understand that just because I’m treating your veins, doesn’t mean that they don’t have to come and see you, Robert, to help them with the secondary portion of it. And even both of us, we still will have to go on and on. Taking care of this patient on a long-term basis. But there’s one thing you don’t do is not an all or none. Sorry, it’s lymphedema, there’s nothing I can do. Sorry, it’s venous insufficiency, there’s no. I’m going to do the best I can, but please don’t ever think that I just cured everything. It is an ongoing problem and you’ve got to keep on addressing it. And I really appreciate the fact that you mentioned that these are other conditions like venous insufficiency which contribute to it. And once I’ve taken care of your veins?
⁓ You still have swelling, then I’ve got to start scratching my head and say, this patient obviously has got some lymphedema issues as well, and get you to see somebody who’s a lymphedema expert like yourself to see what you can do to help them out. I’m going to just fast forward here a little. Once you move on to essentially the treatment, Robert, when you see these patients who come to you and you’ve already got a diagnosis or patients have been referred to you for the management of lymphedema, how do you approach it from there on? And if you could kindly also mention something about the insurance or whether they pay for it or not.
Robert Erkstam (13:53): As far as the treatment approach, we think of it in phases. So the first phase is what we call the treatment phase. The goal is simple in the treatment phase. The goal is to get the swelling down. We want to get rid of the swelling that’s there. Swelling in itself can do harm in many different ways. So it’s never good to have swelling that sits there for a long time. It can lead to infections.
It can start to harden and become fibrotic because it’s a very protein rich swelling that’s in so that’s our goal. And I really appreciate how you, how you take that big picture of everything that’s involved. So we have to look at all of that when we decide how to best treat it. But to give an example of what a treatment could look like is that use compression.
and we use a technique called manual lymph drainage. It’s like a light massage where we stimulate the lymphatic system. If there’s an obstruction, meaning somewhere where there’s been surgery, then we can manipulate it to move around that area. If there’s fibrotic tissue, that means ⁓ where it has gotten hard, we can work manually on breaking that up. But I would say that the most important part of the treatment phase is still compression.
Most of our patients, we use a bandaging system. It’s a multi-layered bandaging system. We also use, I guess you could call it a machine called a compression pump or a pneumatic compression pump. It’s a big, like a big boot that goes on if the swelling’s in your leg, it goes on your leg and it runs, it inflates and creates an intermittent pressure going up the leg. It’s comfortable, it’s like getting a foot rubbed.
We run that machine for an hour and then maybe do the lymph drainage massage and then put the bandages on. The treatment phase is very we tell our clients that it’s very, very effective. We get good results, but it will take time. And a lot of our clients, depending on how bad it is, usually start out coming in three days a week. If it’s later stage, what’s called elephantiasis,
They may have to come in five days a week. One reason for the high frequency is every time we apply these bandages and run this machine, it goes down significantly. And when the swelling goes down, the bandages become loose. So they need to be reapplied often so that we’re not just going back and forth. That’s the short of ⁓ treatment phase. You see a lot of us during this treatment phase, but you also see a lot of results.
But like you mentioned, lymphedema is considered a chronic condition. And we don’t claim that we’re providing a cure to it. What we’re doing is we are getting the symptoms down. Then our second goal, and that’s where our occupational therapy background comes in. Now our job is to teach you, the patient, how to take care of this chronic condition. that you can live a good life, have lymphedema but not have the symptoms of lymphedema. You want to be independent in taking care of this.
