Lymphedema and Lipedema: Notes on Diagnosis

Podcast Transcript

Announcer:

Welcome to Cleveland Clinic Cardiac Consult, brought to you by the Sydell and Arnold Miller Family Heart, Vascular and Thoracic Institute at Cleveland Clinic.

Douglas Joseph, DO:

I'm Doug Joseph. I'm one of the vascular medicine staff physicians at Cleveland Clinic. I've been a member of the staff since 2003, and I see a lot of patients with lymphedema, lipedema and other swollen limbs.

John Bartholomew, MD:

Hi, I'm John Bartholomew. I'm a vascular medicine physician at the Cleveland Clinic since 1988. I'm the former section head, and my interests have always been the swollen limb, especially lymphedema and lipedema, amongst many other topics, but this is a field that's growing. I think there's much more interest than there was when I started in 1988. I can remember seeing my first lipedema patient and my mentor said, well, that's lipedema. There's nothing you can do about it. Over the 34 or 35 years, I've seen advances not only in making the diagnosis, but treatment options too. I'm sure, Doug, could say the same thing about lymphedema.

Douglas Joseph, DO:

It's interesting to think back to when I first started and to now, and there are things that are the same and then there are very different. Clinical exam remains top of mind when it comes to diagnosing both lymphedema and lipedema. It requires really a thorough examination and a thorough history. As we were taught in medical school, if you ask enough questions of the patient, they'll eventually give you, their diagnosis. And that's the best way to make a diagnosis, the best test.

Douglas Joseph, DO:

When we think about lymphedema in particular, we still use the same standard treatments for that, which is manual type therapy, massage therapy, compression bandaging and exercises. Over the years, one of the biggest changes has been the availability of additional diagnostic tests. Something that we've been doing recently is using a special dye, ICG, indocyanine green, and using that to visualize the superficial lymphatics in the limbs or either the upper or lower limbs. We can actually see whether their linear channels are present or if there's collateral channels or if there's abnormal dermal backflows patterns and that kind of thing. We can do that in our clinic. That's something very new that we never had done in the past. That can help define who's able to benefit from additional interventions like venous lymphatic anastomosis or lymph node transfers and that kind of thing. So that's been something very new. The availability of these surgeons that are able to do this what they call super microsurgical procedures to help repair lymphatic drainage from a limb and potentially even cure some patients of their lymphedema. These are new things that we hadn't had in the past.

Douglas Joseph, DO:

Another thing that we didn't used to do, but we do now is collect blood, and we have a biorepository of blood samples both from lymphedema and lipedema patients. There's some early evidence of abnormal platelets. Maybe that could have an implication on the risk for thrombosis in patients with both lipedema and lymphedema. These are some new things that we've been doing.

John Bartholomew, MD:

When I first saw my first lipedema patient in 1988, I was told, there's nothing you could do about it. The field is advancing. I think there's a lot more interest now than there was 35 years ago. There are national societies that are dealing with lipedema as there are with lymphedema, and there are national meetings that go on and exchanging ideas from doctors all around the country and around the world. Lipedema is much more readily recognized. Now we have endocrinologists that specialize in weight loss, and we can refer to them, and then dieticians who know more about how to treat lipedema patients specifically.

John Bartholomew, MD:

We also now send them to lymphedema therapists for instructions in manual lymph drainage because there probably is some damage to their lymph vessels. I think we are finding that out here and at other institutions around the world. The treatment of lipedema is expanding and now there are new medications for weight loss, which will help the overweight lipedema patient and maybe the lymphedema patient as well. I think the field is ever expanding. As said earlier though, history and physical is still very important, especially for both disorders, lymphedema and lipedema, and a good physical exam as well. You can differentiate between lipedema and lymphedema.

John Bartholomew, MD:

An example, a few years ago, one of the heart failure doctors kept coming to me and saying, these patients have swollen legs and they're not responding to diuretics. Well, one of the treatments of lipedema is to not use diuretics. I think the point here is that not all doctors recognize lipedema and lymphedema as well. I think, again, you can make the diagnosis with a good history and physical examination. In that case of the heart failure patient, I said, well, she had lipedema. We don't like to give them diuretics, and we had moved on to a different form of treatment.

John Bartholomew, MD:

I have seen so many changes as Dr. Joseph pointed out, especially with lymphedema and the microsurgery that they are doing. I've seen patients coming in with swollen limbs and they come back and they're so thankful that they have the surgery, and their life has changed completely. We hope to do that eventually more with our lipedema patients as well. I think my advice for the physicians in the community and around the country that are listening to this podcast, again, I've stressed several times, a good history and physical examination. And then once you make the diagnosis, which you can generally just with a good physical examination. I think Dr. Joseph pointed out that for lymphedema patients, they have a positive stemmer sign where you have difficulty picking up the skin at the base of their second toe. With lipedema, they have non-pitting edema, and they often have this ankle cutoff sign. I think making the diagnosis, and then doing your own research, go online, find out what are the latest articles. There are many publications on both lymphedema and lipedema that are readily available to give you the idea of the great strides that are being made in the treatment of these disorders. Especially lymphedema, I think lipedema is just a little bit behind, but I think we'll be catching up. There's a lot of patients that have lipedema, so I think that we're making headway.

Douglas Joseph, DO:

I think, especially in primary care these days, doctors have so many things that they have to take care of. My advice would be to listen for a while and ask a lot of questions and listen to the answers to those questions, and then take some time to do a good examination. If you're suspicious that someone might have not just obesity or not just some mild swelling, you might think they have lymphedema or lipedema or some other limb swelling condition, feel free to refer them and we're happy to see them.

Douglas Joseph, DO:

I think a lot of these conditions, like we mentioned earlier, are chronic and challenging to live with. There's a psychological component. It can be very anxiety-provoking and self-esteem issues can develop. One of the biggest things you can do to help to prevent that is to just listen and to take it seriously.

John Bartholomew, MD:

Yeah, I think those are great comments, self-esteem especially, but also with patients who are overweight, and they have trouble walking and mobility because of lipedema or lymphedema. Psychologically, it's very difficult for them. When you're in your general practice and you have to see people every 15 or 20 minutes, it's very difficult to do. But maybe having them comes back a little bit more frequently, if you can work it out into your schedule and do a piece at a time. I know what I do now because with lipedema, L-I-P, there's always symmetrical swelling. If I see three or four lipedema patients in a day, at the end of the day I'm going, oh my gosh, which one had this and which one had that? I'm low tech, but I use my phone to take pictures and put their photos on their chart and I can go look at their legs and then I can describe them in full. Because if they do need surgery, a good physical exam is important.

Douglas Joseph, DO:

You can always take a photograph of your patient with their permission, of course. There's a way you can actually send those through MyChart or through eConsult, so you can send them our way and we can take a look and help you sort it out as well.

John Bartholomew, MD:

Yeah, I think that's great. A picture's worth a thousand words.

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