Sunday, January 31, 2010

Lymphedema 101

Because Jill asked, and this should have been her big day, I will comply! :)

By definition, lymphedema is an abnormal accumulation of protein-rich fluid in the interstitium, which causes chronic inflammation and reactive fibrosis of the affected tissues.


So what does that mean? Basically, lymphedema is swelling of a body part, most often the extremities. While it can occur in the face, head, neck and trunk, most people picture really, really really large legs when they think of lymphedema. Elephantiasis. Of the 3 stages of lymphedema, it is the most severe.

Not only are there 3 stages of lymphedema, there are 2 classifications as well: primary and secondary. The first is a result of lymphatic dysplasia and is either present at birth or develops later in life without obvious cause. Milroy's disease, Meige's Syndrome and Kinmonth Syndrome are a a few types of primary lymphedema. Secondary lymphedema, the more common form, usually results from surgery or the side effects of radiation therapy for the treatment of cancer. Additional forms of secondary lymphedema can be attributed to trauma, infection, chronic venous insufficiency, obesity and filariasis (parasite).

Most of the patients I see developed lymphedema during or after the treatment of cancer. Their lymph nodes were either radiated and damaged or removed. Unfortunately, this potentially life saving treatment can disrupt the lymphatic system. Fluid that once drained to now damaged/absent nodes can no longer filter properly.

Let's say a woman had cancer in her left chest...and I say "chest" because using the proper terminology could draw unwanted attention to the blog...if you get the idea. Anyway, a lumpectomy may be performed, followed by radiation of the left chest. Sometimes the nodes under the left under arm and upper left chest are radiated and destroyed. If a mastectomy is performed on the left chest, lymph nodes located in the left underarm and upper chest are often removed. Again, fluid that once filtered through those nodes cannot be properly drained. This leads to a back up of fluid in the left arm and or left chest/back. Likewise, if the nodes at the right under arm are damaged/removed, there will be swelling in the right arm/chest/back. The same holds true for the lower extremities. Only their nodes are found around the "thigh", again, for the sake of unwanted visitors! There is no cure for lymphedema at this time. That is where I come into play.

When I worked in the clinic, I performed manual lymphatic drainage (MLD). This is a type of massage that is designed to increase the movement of lymph and interstitial fluid. It was my job to help redirect fluid from "clogged" areas to "unclogged" areas. Once finished with massage, the patient's affected limb would be wrapped in compression bandages. The patient would leave the office with ace type wraps in place, although they are NOT ace bandages. BIG difference between the wraps I use and ace wraps but that is another story... They wear the bandages all day and all night. They do exercises in them. They cook in them. Work in them...get the idea? They come back the next day and I remove the bandages and let the patient wash up before I start the process over. Massage. Wrap. Exercise. Leave. Come back. Massage. Wrap... This goes on for 5 days a week, an hour and a half at at time, for 2 weeks or more until I see a plateau in the size of the limb. All the while, the patient is being educated on how to wrap their own arm, exercise, and how to do self massage. They are fitted for a compression sleeve which, ideally, they wear every single day for the rest of their lives. I also get compression sleeves for them to wear at night because the day sleeves are not intended for that purpose. And if the patient is REALLY lucky, they have great insurance that covers the compression pump I told you about a few posts ago! Once the arm/leg/head/neck/trunk is as small as I think I can get it and they and/or their caregiver are independent with their home program for maintenance, they are discharged.

Whew! Was that about as clear as muddy water??? Probably so! I think it is a decent overview of lymphedema and what I do/did in treatment. There is nothing more exciting for me to see in the clinic than a large arm come in the door on the first day of therapy and leave a LOT smaller when I am done with them! For the most part, my patients are wonderful to work with. Needless to say, I spend a lot of very personal time with them and get to know each one on a very deep level. Right up my ally!

Let me know what I need to clarify. I am terrible at proofreading my posts, as you know so I am sure there are tons of runons and what not. I wanted to get this out today especially for Jill. She was supposed to have her baby shower but the weather did not cooperate. I am SURE this post will make up for it!!! :) Or not. Thursday will make up for it!

And just incase I could get in trouble for this post or something...
Most of this information is from my training manual from Klose Training and Consulting, LLC, 2004. The amazing Guenter Klose taught me everything I know!


Jill Fields said...

You did great! Thank you so much for explaining all that! It is really ironic, because just yesterday I was on the phone with a lady who has lymphedema who had been discharged and is now receiving home health care through my department at MRH. She doesn't have insurance for the medical equipment (I'm assuming these wraps or pumps), and that is where I came in to try to find some funding sources. I feel much more confident now in being able to understand her needs. Thank you! See you Thursday! I'm pumped!

shashank said...

Here is a link to more information about the genetics of Milroy Disease that was prepared by our genetic counselor and which has links to some useful resources for those dealing with this condition: There is also a phone number listed if you need to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA