Lymphedema

The lymphatic system is quite complex and is part of both the vascular system and the immune system. It's a fairly complex system to learn about it, but vastly important to our health and well-being.

Lymphedema is rare...it's estimated that only 1 in 6,000 people have hereditary lymphedema (present at birth or after puberty from a genetic mutation) and secondary lymphedema (caused by infection or trauma) majorly depends on what happened to you, where on the body the surgery/infection/trauma took place, and many other individual client factors.

Secondary lymphedema is the most common form of lymphedema, and in other countries is mostly caused from filariasis. Luckily, for the US that bacteria from mosquitos is rare! Secondary lymphedema also originates from cancer surgeries, radiation treatments, car accidents/traumatic accidents/falls, or vein insufficiencies.

Breast cancer with adjacent lymph node removal is the most common form of upper extremity lymphedema in America, with CVI (chronic vein insufficiency) & pelvic cancer surgeries/radiations being the most common for lower extremities.

Lymphedema is different from regular swelling, also called edema, in that edema is mostly excess fluid in the interstitial spaces (between the tissues). With time, compression, and elevation, regular edema usually goes away on its own. Lymphedema can start out this same way, but as it progresses through the stages, elevation and regular compression tend to work less and less. This is because protein molecules that are found in lymph fluid are macromolecules (meaning they're too large to be reabsorbed). Without treatment this can lead to pitting edema, infections, lobules, skin hardening and color changes as well as ulcers, weeping of the extremities, wounds and elephantiasis in severe, untreated cases.

Lymphedema is hard to diagnose and is so often misdiagnosed as something else before it's finally seen as lymphedema. Lymph vessels can be regenerated, but lymph nodes cannot. We are born with only so many nodes; they are positioned in our neck, armpits, abdomen, and groin. We only have so many, each person is a little different, and once they are damaged or removed, they are gone forever. It's very easy for the remaining lymph nodes to become overwhelmed with lymphatic fluid.

Lymphedema is very manageable when treated and can even be stopped in its tracks when treated early! There are four stages to lymphedema (labeled: latency stage all the way to elephantiasis). There are more and more lay people, nurses, therapists and doctors becoming educated about this. There has been a cancer bill passed already where insurances are having to do better with paying for care after surgeries and radiations with different items it covers for patients with lymphedema AND a hopeful next bill being sent through now: The Lymphedema Act. You can sign your name to this and help it get through Congress if you'd like! https://lymphedematreatmentact.org/

Lymphedema needs to be treated by a Certified Lymphedema Therapist (CLT). More harm than good can be done if treated by someone who is not a professional and certified in this specifically. Many therapists can do manual work, retrograde massage, therapeutic massage, but Lymphedema is something completely different than normal swelling and needs to be treated accordingly.

There are two stages to treatment....

Stage 1 involves coming to the office of a CLT for Manual Lymph Drainage (MLD) and compression bandaging. The skilled therapist there can give you a run down of how this works, as different therapists have different ways of going about this. But, true lymphedema therapy should begin with both of these things! And lots of patient education. A good therapist will walk you through what she/he is doing and why and teach you how to do this to yourself when the time comes to be discharged.

Stage 2 involves continuing the MLD at home daily and wearing a compression stocking daily. They have a billion different kinds of these and only need to be updated every 6 months or so for elasticity. Some insurance carriers even cover compression stockings and many will cover a vasopneumatic compression pump that practically does the MLD for you. Be wary of these though as they do not prep and open the lymphatic pathways like hands on MLD does, but can be an excellent source of help with compression massage!

Lymphedema can seem scary, but that's where we come in! We are well versed in all things lymphedema and it's our passion and mission to help clients get back to life before lymphedema!