What Is "Lymphedema"?

That was my question back in November 2008. In two surgeries I had had all 27 lymph nodes removed under my left arm. While I still had my drainage tubing in, I began to notice something weird going on with my arm. It was getting "puffy" to put it nicely and it kept "growing." In less than two weeks, my whole arm and hand looked like a balloon that would pop if someone pricked me with a pin. It was annoying and uncomfortable. And it would start hurting after being awake several hours. I had no clue what was going on but I didn't like it. No one had told me that whatever was happening...might.

So, I called my melanoma specialist surgical oncologist at Duke and spoke to his wonderful nurse, Karen, with all sorts of initials after her name. I told her about my arm. Her reaction? "I wonder..." and she put me on hold while she consulted whoever she consulted. When she returned she told me that it sounded like lymphedema had started, but if that starts in someone it's usually not so soon after surgery. It can take yeaeaeaeaears, up to 20, for it to set in. So I made an unexpected return visit to Duke for Dr. Tyler to look at my arm and then he sent me straight to the Physical Therapy Department at Duke...they had already made me an appointment to be seen. Sure enough, it was lymphedema. Because Duke is over 2 hours away, the physical therapist I saw got online and found me a PT who was certified in lymphedema an hour closer to me. She was in Chesapeake, Virgina. I've written a little bit about my experience with her.

I learned a lot about what lymphedema is. When lymph nodes are removed, most people's lymphatic system will kick in, adjust, and pick up the slack. It will compensate for the missing nodes and they really aren't "missed" because the fluid will reroute to nodes close to the missing ones.

Then there are people like me and those missing lymph nodes are missed! Nothing kicks in and lymphatic fluid builds up. Mine was in my arm. It can happen in a leg if lymph nodes were removed from the groin area.

If this is you, my advice is to contact your surgical oncologist or oncologist and let them see your limb. The facility you go to should have a physical therapy department and your doc can get you an appointment to see a PT knowledgeable about lymphedema.

This is a condition that can be brought under control with proper exercising, massage, wrapping/compression, and other treatments a PT might consider necessary. If it's not too bad of a case, you'll be able to manage it on your own with massage and exercise. If it's worse, like mine, you may need compression. I will wear compression, everyday, for the rest of my life. And that's OK. I'm here. BTW, my physical therapist specialized in lymphedema and she told me that once in compression, always in compression...don't think "it's better" and stop wearing it or you'll balloon back up and it will have to be brought back under control again.

A bit of bright news amongst the bleak: I've discovered Lymphedivas which is where I now get my sleeves and gloves. No more BEIGE!

I've learned what works for me when it comes to managing this. Five years down the road and I STILL sleep with a small pillow under my arm. I keep it elevated as much as I can when I'm awake and always drive with my arm propped in the window. I stretch and move my arm around a lot. Ibuprofen and I are close friends come nighttime. I don't like being in the hot or in the cold. Comfortable can still be uncomfortable in that arm, but again, that's OK. I'm here.

It's just one of those bumps in the road, but it can be dealt with. And I really do advise dealing with it with the help of someone who knows how to help you. Don't try to deal with it alone.

But's that me. I was blessed to be handed to the Physical Therapy Department at Duke on a silver platter. I'm just passing along what I benefited from. Hope this helps.

charis