Lymph Living

I traveled from where I live in Montana to the Cleveland clinic to get an ICG (Indocyanine Green) test, also known as an ICG lymphogram, is a diagnostic imaging procedure used to evaluate and stage lymphedema. It is a test that uses a special fluorescent dye and a near-infrared camera to visualize the exact flow of fluid through your lymphatic system in real-time. I went to Cleveland in hopes of getting an lymphatic bybas surgery, but the results of my ICG test, limited my to the Matisse surgery… I’ll go over that on another post.

Basically they take a small needle and inject green dye into the affected area, as well as a control side. Since I have lymphedema in my right hand and right arm, they injected a small amount of dye between two fingers in two spots. They also did this on my left arm so we could assess the difference. It felt similiar to Botox injections (ha!) or some other small prick of a needle. It was not particularly painful at all.

After the injections we just waited for 10 minutes to see what happened. The dye is supposed to attach to proteins in the lymph and immediately get taking up by the lymphatic vessels in the body. In a healthy lymphatic system the dye should shoot right up your arm. Now the nurse practitioner that did it used a special camera, but honestly you can see the green with the naked eye just fine. And what I saw is the lymph did. not. move. On either side, not the lympedema side and not the “healthy side”. After this they put my on a full body vibration machine. It included vibrating handles. I stood on it 2 min on 1 min off for three rounds. Then the nurse practioner checked my imaging again. The vibration was enough for my healthy arm to shoot the dye all the way up my arm. Still absolutely nothing on my lymphatic side.

I then met with Dr Wei Chen to review my imaging. It was determined that I have a sluggish lymphatic system in general. I wonder if this is why I quickly developed lymphedema when my lymph nodes were removed from cancer. Perhaps I had an underlying risk factor? I have always been a very active person, and perhaps this protected me earlier? Dr Wei Chen also noted that someone with imaging like mine should look much worse than I do. My arm and hand are swollen but with compression, and honestly constant work, I keep my hand and arm close to the same size as my other.

My imaging did mean I wasn’t a candidate for LVA, at least not right away. I did the Matisse procedure and will have to wait a year before another surgery to see how my lymphatic system responds. I am supposed to go back to Cleveland in August to have the ICG procedure done again and see if there is improvement.

Anyone else had this test done? Did you learn anything interesting?

My ICG Lymphatic Mapping Test: Why I Wasn’t a Candidate for Lymphatic Bypass Surgery

An interesting tests I had at the Cleveland Clinic was ICG lymphatic mapping. This test uses a special fluorescent green dye and a near-infrared camera to watch the flow of lymphatic fluid through your body in real time.

I traveled to Cleveland hoping I would be a candidate for lymphatic bypass surgery (LVA). Unfortunately, the results of my ICG test showed that I wasn’t. Instead, I underwent the Matisse procedure—but I’ll save that story for another post.

What the ICG Test Was Like

The procedure itself was much easier than I expected.

The provider injected tiny amounts of green dye between two fingers on my right hand (my lymphedema side) and also did the same on my left hand as a comparison. The injections felt similar to Botox or any other small needle stick—not particularly painful at all.

Then we waited about 10 minutes.

The dye binds to proteins in your lymph fluid and, in a healthy lymphatic system, is quickly taken up by the lymphatic vessels. Ideally, you should see the dye travel rapidly up your arm.

The nurse practitioner used a specialized near-infrared camera to watch the dye move, although honestly, you could see the green dye with the naked eye.

What My Test Showed

The dye Did. Not. Move.

Not in my right arm with lymphedema.

Not even in my “healthy” left arm.

To encourage lymphatic flow, they had me stand on a full-body vibration platform with vibrating handles. I did three rounds of two minutes on and one minute off.

When they repeated the imaging, something interesting happened.

The dye in my left arm suddenly shot all the way up my arm, showing that the vibration had stimulated lymphatic movement.

My right arm, however, still nada. NOTHING. Zero movement.

Meeting with Dr. Wei Chen

After the imaging, I met with Dr. Wei Chen to review the results.

He explained that my imaging suggested I have a generally sluggish lymphatic system, not just on the side affected by my breast cancer treatment.

That made me wonder if I may have already had an underlying lymphatic weakness before my cancer surgery. Maybe that made me more susceptible to developing lymphedema after my lymph nodes were removed? I don’t know if that, but it made me curious. I’ve always been a very active person, and I also wonder if staying active helped compensate for a slower lymphatic system before surgery.

Another thing Dr. Chen told me surprised me.

He said that based on my imaging, he would expect my lymphedema to be much worse than it actually is.

That was encouraging to hear because managing my arm takes SO much work- as you likely know if you are reading this. I spend a lot of time trying to keep my hand and arm close in size to my unaffected side. Hearing that those efforts seem to be making a difference was both reassuring that I was probably doing something right, and exhausting to know that the things I do make a difference and I probably shouldn’t stop doing them. You get the burden of that.

What Happens Next

Because of my imaging results, I wasn’t a candidate for LVA surgery, at least not yet.

Instead, I had the Matisse procedure. The plan is to give my lymphatic system about a year to respond.  I’ll be returning to Cleveland in August for another round of ICG imaging, which is about 6 months since my procedure, and I’m hopeful we’ll see some improvement.

I’m looking forward to sharing what I learn.

Have You Had an ICG Test?

I’d love to hear from others living with lymphedema.

Have you had ICG lymphatic mapping? What did your imaging show? Did anything about your results surprise you, or did they change your treatment plan?

Please share your experience in the comments. The more we learn from each other, the better we can navigate this journey together.