Dr. Manu Aggarwal: Let’s start with your background, specialty, and interests.

Dr. Brett Carroll: I’m a cardiologist and vascular medicine specialist at Beth Israel Deaconess Medical Center (BIDMC) in Boston, MA. I direct the vascular medicine group here. Early after I started, Dhruv Singhal, a microsurgeon trained specifically in lymphatics began developing a multidisciplinary team to manage lymphatics. He ultimately joined Boston Children’s Hospital, just next door to BIDMC, to create the Boston Lymphatic Center. This Center is a Lymphatic Education & Research Network (LE&RN) Center of Excellence as we offer the full breadth of evaluation and treatments for children and adults.

My main role as the Director of Lymphatic Medicine is to evaluate patients, make the diagnosis that they do have lymphedema, and manage any concomitant processes, whether it be heart failure, obesity, etc. I also work closely with our certified lymphedema therapist (CLT) in managing them conservatively.

MA: Tell us about your recent trip to the Földi Clinic in Germany.

BC: The Földi Clinic has been well-known in the lymphatic world for a long time. Many of our therapists and others we work with within the community have either trained there or received training sessions here in the U.S. based on their teachings, especially in manual lymphatic drainage (MLD). Földi Clinic pioneered MLD.

Dr. Singhal, Kathy Shillue (our lead CLT), and I went to the Földi Clinic in 2022 to learn both their approaches to lymphedema and lipedema. They have a unique approach. I was at the clinic for three and a half days, and we saw both lipedema and lymphedema patients.

MA: What was your experience regarding the differences between how Földi Clinic approaches lymphedema and lipedema patients and how we do it in the US?

BC: What was most notable is how they can structure their program based on insurance. We don’t have inpatient complete decongestive therapy (CDT). That’s a profound difference. We saw the full spectrum of patients, including those who had horrible wounds, massive edema and had been there for months. We saw other patients who would visit for a couple of weeks for their yearly tune-up. Their edema was not perfectly controlled but under good control. They go for their new garments and to get updated on their exercises and movements. They get MLD and CDT depending on their needs. And then they go home and come back again a year or so later, or sooner if needed.

That’s not an option here. We try to offer that care on outpatient basis in the U.S., but we can’t replicate what they can do during an inpatient stay. They make daily rounds with MDs. It’s a hospital/ rehab facility. It allows patients to still be ambulatory. They focus a lot on well-being—mental well-being as much as physical well-being—and diet. The nitty gritty is the compression and CDT.

There are so many patients I see here who I wish I could admit for CDT. Though we have some inpatient services, they don’t compare to what Földi can do. It wouldn’t be acceptable to say this patient has chronic lymphedema, and I’m going to admit them for a month. We just don’t have that capability in the U.S. That was the most profound difference.

MA: How long do they typically stay when they’re admitted?

BC: You have separate groups of patients. Those with complex, big wounds and massive edema are there for months, as long as needed. They get therapy daily or multiple times a day and wound dressing changes. They have a full spectrum of lymphatic therapists, wound specialists, MDs, and nursing staff. Aside from those extreme cases, we saw a couple of patients who had been there for months. For comparison, we saw pictures of them from when they first arrived. Their conditions were still profound when we saw them, but much better than when they arrived. Then you have patients who need more of a tune-up and are there for two weeks or so.

MA: They’re looking at it from a dietary as well as a mental and physical standpoint, which probably we don’t get to do as comprehensively here in the U.S.

BC: We just don’t have the time as an outpatient visit to sit down and go over all the components. Földi works a lot on mental health and the association of any anxiety, depression, and eating disorders that could be associated. They deal with lymphedema from a mental and emotional decrease in volume. Then do it again the next day, and then slowly over two to four weeks (or whatever the timeframe may be), you really see a difference. In the U..S we see a lot of patients who see their physical therapist (PT) two or three times a month for MLD, and they just don’t get the results.

MA: Do you feel there’s a difference in the MLD at Földi, or maybe Europe in general, versus something we see here with our CLTs?

BC: Klose came from that same Földi teaching. I can’t speak as much to the actual technique as much as how they utilize it. Here we don’t do a lot of MLD at our center because it’s limited. MLD performed only a couple of times a month doesn't really help. It needs to be paired with high-quality compression. In an inpatient setting where you can do MLD once or twice a day, and wrap you in between, then you get that decrease in volume. Then do it again the next day, and then slowly over two to four weeks (or whatever the timeframe may be), you really see a difference. patients. In the U..S we see a lot of patients who see their physical therapist (PT) two or three times a month for MLD, and they just don’t get the results.

MA: Do you feel like the garments used are different or is it just better patient compliance?

BC: I didn’t notice the material itself being any different. But, Földi Clinic uses a lot of custom garments, specifically flat knit custom garments. They also have the ability onsite where they can augment their garments. It’s not a factory, but it’s essentially a little mini factory where they can fit the garments right there.

They’ll have patients who are stable come in from around the country for their one annual visit. They’ll see the physician, and if they’re doing fine clinically, they get measured for their new special garment the same day and then have them mailed to them. That’s for stable patients. There are inpatients that are getting the CDT, and then they get measured right before they go home, but they go home with their garments.

Our problem here is we’ll do CDT, and then they get measured when their volume is down, then we have to wait four to six weeks before they get their garment. They continue to need it to be wrapped, and it’s just not as smooth of a process. Again, I’m not sure the material was any different other than just their ability. And I’m almost positive most garments are covered in Germany. They don’t have the issue of patients waiting to replace old garments due to affordability. Here, we rarely see a patient that comes to us with a custom garment already.

MA: We’ve been doing lymphedema in our practice for about seven years now with a CLT, and we rarely do customized garments. I mean, we’re throwing in foam pieces, or we’re throwing in short stretch wraps, or we’re using something that’s going to be the cheapest option for the patient. With therapy in our office, if they’re not coming twice a week, which they typically do, they’re not going to see a huge change in their condition. We do a ton of MLD and a lot of compression pumps for at-home use. Was there any difference in that arena?

BC: They have the CLT right there. I’m not sure how much they utilize pumps. Our approach here is that the pump is something, and that’s better than nothing. It only works to a modest degree and is best with compression. We are similar in our approach of getting the fluid down as much as possible and then getting the patient in superb compression to maintain it. Rather than this constant push and pull of a suboptimal fitting garment, let’s do the pump later that night to try to get rid of the fluid. Obviously, there’s only so much compression can do as well.

MA: What about medicinally? We talk about what medicinal things we can use in lymphedema. Did you notice any difference in that regard, or are they just kind of staying away from medicines?

BC: I didn’t see them prescribe anything or recommend anything from a medicine standpoint if they had pure lymphedema or lipedema.

MA: At POWER Lymphatics 2022, Dr. Tobias Bertsch and his team showed a quick video at that meeting about how they talk a lot about movement and feeling comfortable in your body, and just being okay with and living with the disease process. I think that’s different from the US. Taking it one step further, even from a surgical standpoint, I feel people in the US are quick to ask, can I get surgery? But their BMI is prohibitive. Do you think there’s a difference in those feelings toward surgical treatment?

BC: Földi does have a surgeon who will perform lipedema debulking-- it’s liposuction, but overall their approach is conservative, and only a small subset will undergo surgery. As you mentioned, the patients have to have a BMI that’s under good control, less than 30 or 35. They also really feel that a patient needs to have pain to even offer surgery.

Dr. Tobias Bertsch isn’t convinced that lipedema is even a disease process if they’re not having concomitant pain, which is not unreasonable. He’s like, what are we treating here? He sees it as more cosmetic. If the patient wants it done, that’s fine; that’s up to the patient, but it’s more cosmetic if not concomitant pain as well.

If the patient has pain, they focus a lot on mobility, self-acceptance, and mental health. They do a lot of compression for lipedema as well. Not to reduce edema, as there’s really no edema; it’s to reduce the pain associated with it. They believe there’s some tactile benefit to compression. For that neuropathic, fibromyalgia-like pain where soft, light tender touch elicits exquisite tenderness, Dr. Bertsch feels all this may improve with compression, which also aids in the control of motion of the soft tissue. Then there is not so much movement that may contribute to some discomfort if contained.

If a patient goes through their program and still feels discomfort, they’ll consider surgery. But they feel the data is mixed, or their experience is mixed, in terms of whether or not the pain goes away. They are upfront with patients about that because it may be that the pain is not lipedema related at all.

I have heard secondhand that other centers in Germany feel you don’t necessarily need as tight of a BMI cutoff to have surgery. They don’t necessarily have as much of a comprehensive center or focus as they do at the Földi Clinic. If the patient meets whatever criteria that individual clinic has, they offer the surgery and feel like the pain almost always improves.

MA: We see a lot of tissue sensitivity improve dramatically just with MLD and compression garments. It is a mixed bag when you think about it. Will they improve with surgery, or do you just make it worse? It’s hard to tell. Do you think there’s any role with some of these newer medications that aren’t FDA approved specifically for weight loss for our lymphedema or lipedema patients?

BC: I tell all my patients who are overweight that I’m really not sure what lipedema is. There are no diagnostic criteria for it. And whether they have it or not, there’s likely an overlap between traditional obesity and an individual’s particular body shape, their underlying genetic body shape and not necessarily a specific disease. I try to emphasize that they don’t necessarily have a disease. Then there’s this other entity that is lipedema (which is a horrible name), as the adipose deposition process that’s out of proportion to one’s torso and is painful. What bucket you put an individual in or how much of those buckets you put an individual in can be tough.

However, for those patients, we do refer to our affiliated weight loss clinic. We say focus on losing weight and then return; let’s see what’s left over. And there may be some degree of resistance, but I think that’s overplayed.

There was a paper with thirty patients with lymphedema and thirty with lipedema. And they found that the size of their legs was reduced following weight loss surgery. Similarly, what we see is whether someone has lipedema or lymphedema, the leg size definitely goes down after gastric bypass surgery or weight loss surgery.

We’ve seen this in our practice, and I’m sure you have too, their legs still look disproportionate to their torso, but their legs are now 30% smaller, for example, than they were before. So, we try to focus on weight loss first. I tell patients we’re not trying to ignore the lipedema; we just have limited treatment options with lipedema. But we do know—more so in the last few years—how to get people’s weight down, whether with surgery or medically. I don’t manage that myself, but we send them to our obesity medicine colleagues. This can be frustrating for many patients but we feel it is an important aspect of their care if the BMI remains elevated.

MA: Is there something from your experience and what you’ve seen that you would like to see in the U.S.? Of course, better insurance coverage and early recognition would be great.

BC: It’s a little backward here—we won’t pay for people’s compression, but I can get a nuclear lymphoscintigram very easily, which probably costs twice as much as three years of compression. We do a lot of imaging here, especially preoperatively. Földi Clinic was impressed by how easily we could do imaging from a financial standpoint and how much we could learn from it. We don’t know that much about lymphedema either as a medical community. So, understanding some of these detailed anatomic changes is great. We do a lot of imaging here, even invasive, and they just don’t have that as easily available.

It would be great to have a facility that could mimic what they do at the Földi Clinic—like a rehab center would be, more of an in-between hospital and home. Having those centers throughout the country, not in every city but in every region, would be life-changing for patients with severe cases of lymphedema.

MA: Is there anything you will consider adding to your practice since your visit there?

BC: I think we have already changed our approach regarding lymphedema. We were doing a lot of what Földi had been doing within the limitations of our capabilities within the healthcare system. We have moved more towards getting patients into custom garments more often, again within the feasibility. I think before we said, well, you’re in a 30 to 40mmHg, it’s a pretty good fit. You have a normal-shaped leg or arm, and that’s probably sufficient. But now we’re really trying to get them into flat knit garments to get that edema under more optimal control—again, when feasible. From the lipedema standpoint, we're trying to take more of a holistic approach that incorporates diet, exercise, weight loss, self-care, self-acceptance, and the mental health behind it. And that’s difficult to implement. We’re trying to find social workers, psychiatrists, and psychologists who want to be involved.

What we took away from that visit was if we’re going do for lipedema patients what we’re doing on the lymphatic end, in terms of a multidisciplinary approach with CLTs, medicine, surgery, and radiology, we need to incorporate those other aspects. It has been difficult with the current state of the world to find those staff. But I think before you tell someone they’re a good surgical candidate, you really should evaluate them holistically and make surgery the last resort.

MA: Many of our readers are in private practice or small towns and may not be part of an academic center. Is there something we could be doing more or doing better in terms of our lymphedema patients?

BC: I don’t want to be biased because I work in more of an academic tertiary center, but when a patient is diagnosed with lymphedema, having at least an initial evaluation with someone more comfortable managing it is beneficial. What we often do with lymphedema patients is help their local CLT, who maybe only sees a couple of lymphedema patients a year and could use some help, especially with the more complex patients. So, sending patients to a center that is more experienced in seeing CLTs for a second opinion and then working in a collaborative way to allow more patients access to expert care that may not otherwise be available, given the limitations of that expertise in the country, is one way to help patients.

MA: I do refer my patients to academic centers because they might be able to suggest something different or put my patients into a study or any trials. I think it is important to reach out to the academic centers. It’s a complex problem for these patients, and to do it on your own can sometimes be overwhelming. Results can sometimes be underwhelming for the patient as well.

BC: Exactly. As you said, there are things that can be offered. They’re not necessarily more complicated; it’s more about knowing how to do it and directing those who are seeing them locally.