What Can Be Learned from Lymphedema Diagnosis?

Many health practitioners are still figuring out what Lymphedema is, let alone what to do about it. On that patient side, actual Lymphedema diagnosis can be a costly endeavor, an unnecessary formality, a step toward surgery, or a source of affirmation. For me, like most things, it became a matter of knowing the rules so I’d know how and when I could break them.

Before I get started in telling you what I did and what resulted, a quick disclaimer: I’m not a health professional, nor am I the most knowledgeable when it comes to Lymphedema (LE) diagnosis, but when I was searching for information on diagnosis, it was scarce, so I share my experience in hopes it will help others. Please consult a medical professional before taking actions or forming conclusions about your particular situation.

For background, I began suffering from LE when I was expecting my daughter more than five years ago, but I was told I had Lymphedema almost two years ago. You can read my LE story if you’re interested. The PA that first suggested LE was sure I had it though countless others before her hadn’t even mentioned it as a possibility.

First things first: cardiology

I had settled into a lifetime of compression tights for treatment of stage three LE. But just a year ago when I learned online about diagnostic techniques, I asked my primary care doctor about it and he sent me to a cardiosurgeon within the Mayo network for further evaluation. The cardiosurgeon was very familiar with LE, took one look at my toes, and knew I had it. His was going evaluate whether my edema (i.e. swelling) was caused by LE or a vascular deficiency before proceeding with other tests. The dead giveaway to him, aside from an ultrasound, was Stemmer sign (the inability to pinch the skin at the base of the toes) and keratosis (changes in skin density). He thought the LE may have been caused by an unplanned cesarean section.

Next stop: Lymphoscintigraphy

The next week, I was invited down to the radioactive troves in the basement of the Mayo hospital, where I was told to get comfortable, as I’d be there a while. I lay down on a conveyor belt in my gown, as two physicians sterilized my feet, applied lidocaine, and then injected radioactive dye between my toes on both feet, which hurt quite a bit in my big foot.

For the next three hours or so, techs slid me into and out of the machine at prescribed intervals to take video and progressive photos of how quickly the tracer dye was moving through my lymphatic system from my toes to my trunk. In between, I was encouraged to walk around and give pep talks to my lymph nodes. In the end, we were able to see that my right leg was delinquent (the dye never graduated to my trunk) – my left side was just a C student.

The Mayo team, as fond of research and information as I, decided they’d like to do more studies and determine whether I was a candidate for corrective surgery. They needed to check out, not only what sort of lymphatic flow I had in my leg, but whether were were obstructions or other potential issues. The surgeon noted, “I would hate to do a lymphaticovenous anastomosis (LVA) and convert this to a total obstruction if these vessels clot or scar in.”

Lymphangiography: SPY cam for the lymph system

This time I met with a plastic surgeon focused on LE and a nurse in a small inpatient room. He injected green indocyanine dye at the base of my delinquent foot with a hugely long needle that was also very thin and terrifyingly bendy (but relatively painless). We waited. He massaged the dye through my feet, shut off the lights and turned the SPY Elite camera on, as we watched my lymph system (try to) carry the dye up to my torso on the monitor (at right). To my surprise, nothing happened. So we waited more. I got another toe massage. We said, “C’mon lymph, you can do it – you’re good vessels, you just have to apply yourself.” Eventually, we saw some movement. Very slooooow movement.

This diagnostic technique is great at showing you exactly what’s specifically going on with your lymph system. With a few needle pokes, a half-hour’s time, and a dyed foot, you’ll be able to see your lymphatic channels and the speed of uptake in fluorescent green real-time.

At this point, the surgeon thought I might be a good candidate for corrective surgery. We talked about surgical options including LVA, vascularized lymph node transfer, and liposuction to slow the progression of the condition, and the fact that, regardless, I’d probably need to continue with compression therapy forever.

MRA: hours of classic rock in a noisy tube

A week later, I was back at Mayo. This time for a Magnetic Resonance Angiography (MRA) – my least favorite procedure of the bunch. I was given a drip of a Gadolinium-based contrast media (i.e. a different type of dye), and was slid into a crash-bangy MRA machine, and told to sit still for a few hours, as I rocked out to Lynard Skynard, Chicago, and Janis Joplin, so I was in good company. It was freezing and my bladder was not happy. I had to keep from tapping my toes – perhaps I should have opted for adult contemporary – but I think they enjoyed my singing.

The MRA took a very accurate anatomical picture of the misbehaving limb. The surgeon was particularly interested in whether there’d be any blockages that would eventually shut down lymph valves following surgery. They didn’t find obstructions, though they did tell me in a professional way that I have fat calves (thanks, I could tell you that for free), and that my lonely lymph node is slow and beaded – apparently it looks normal but is your classic underachiever.

Next step surgery?

Good surgery candidates are early in the progression before there’s much scarring. Options include LVA where they bypass the lymph system and connect a lymphatic channel to the venous system, lymph node transfer where nodes are removed from another part of the body and placed gingerly in the affected limb, or liposuction to reduce blockages that increase limb size and may slow lymph flow. Again, consult with a physician.

So after all this testing, was I a strong candidate for surgery? Turns out, not. The team suggested that I lean on my lonely lymph node till it tells me, “I just can’t do this anymore, babe,” and leaves me stranded. Or maybe I was a pain in the you-know-what and asked too many questions there are no answers for about a system of the body that is far less studied than others and where there is little if any definitive information.

So what was the cause of the LE?

Early on, I was very interested in the cause. I asked doctors whether it could be Lymphatic filariasis, usually caused by mosquitoes in third world countries where I’ve spent large parts of my life. They told me I didn’t have the other comorbidities associated with filariasis. Throughout my procedures, the doctors suggested my cesarean section caused the LE, even though I had Stemmer sign before my daughter was born. They thought that might be the only possible trauma.

When I suggested secondary LE caused by childbirth to my occupational therapist, a woman who has been treating LE her entire career and who is notable in LE community, she said that was absurd and mine was definitely genetic. “No, this is primary – don’t listen to them.” I guess, in the end, it doesn’t matter.

Was Lymphedema diagnosis worth it?

I’ll tell you, aside from learning all hallways of the Arizona Mayo medical campus and getting comfy in a backless gown, the process was fascinating, and hopefully the info here will help someone. I don’t take for granted how lucky I am that my employer-provided health insurance covered these procedures at such an amazing medical system. I wish it had brought me closer to normal, but normal has never been my path.

I’m equipped with so much information now and am happy to know what’s going on in C-student and rebel leg without a cause. And though there isn’t a “solution” for me, I’m happy to have an idea of how to better manage with compression – what is non-negotiable and when I can be flexible with my treatment. I know now that I need to coddle my LE limb, and I have a few more options with the other leg. Maybe once in a while, I can be daring and show a little left ankle. Believe me, it makes a huge difference when it’s 120 degrees in Phoenix.

Finally, does it change the outcome? No. LE is my reality. Every day. The comfort is in knowing that I’m in good company. There’s a beautiful community of LE warriors out there, amazing people, none whom opted into any of this, and each with their unique story, battle, and daily victories, and we are in this together. For all of this, I am grateful.

If you had a different outcome or are considering testing, I’d love to hear about it in the comments below.