Whether it’s a lumpectomy, mastectomy, or the removal of lymph nodes under the arm, you will likely have some post-surgical discomfort. But if your arm feels thick, heavy or full, or you notice that your jewelry or clothes seem tighter on that side, even if you cannot see swelling, you might be experiencing early warning signs of a condition called lymphedema.
“Any of these procedures put you at risk of developing lymphedema,” explains Ashley Abraham, an occupational therapist at Riverside Physical Therapy – Regional Medical Center. “It occurs when the body is unable to get rid of the natural fluid your lymphatic system produces, so it builds up and causes swelling.”
“It can happen in the arm, chest or upper back on the side of the body where lymph nodes were removed,” Abrahams continues. “The more lymph nodes that were removed during surgery, the higher the risk.”
Abraham explains the causes, stages and treatment for lymphedema as well as how to determine the difference between lymphedema and nerve pain.
What causes lymphedema?
Certain activities can cause fluid retention and swelling, which can lead to lymphedema. They include:
- Increased pressure when flying on an airplane
- Hot temperatures, especially if the body sweats and moves fluid around to keep cool
- Constant friction of your arm rubbing against your side during exercise when on the elliptical or lifting weights
“If you’re in one of those environments and recognize that your arm feels kind of funny afterwards, take note,” Abraham cautions. “Even pulling weeds on a hot day could be a trigger. Luckily, during the pre-stages of lymphedema, it may clear out its own if you lift your arm or rest it. But if it continues to occur each time you do that activity, or it doesn’t get better, then it needs treatment.”
Stages of lymphedema
There are four stages of lymphedema. When left untreated, lymphedema will usually progress.
Stage 0 - Latency or Subclinical
There is no swelling and often no symptoms of lymphedema. It could remain this way for months or years. Sometimes, the arm could feel heavy, tight or achy.
Stage 1- Mild
A small amount of fluid builds up, and there may be some pitting in the area. In this stage, lymphedema will usually go away with elevation or compression.
Stage 2 - Moderate
Fluid begins to cause swelling that doesn’t go away by lifting the arm or with compression. The skin starts to become thick. It can be treated, but it will take some time.
Stage 3 - Lymphostatic Elephantiasis (Severe Stage)
There is swelling. The skin changes and can become darker, lumpy and thick. Fungal and bacterial infections can occur. Treatment is more difficult and patients typically need daily compression to manage their symptoms.
How lymphedema is treated
Lymphedema is treated by an occupational therapist or a physical therapist who is a certified lymphedema therapist. These specialists use a technique called Complete Decongestive Therapy (CDT).
“Lymphedema therapy can involve compression, which could include wrapping the limb or using certain garments,” Abraham explains. “Therapists also perform lymph drainage, a soothing massage that pushes the fluid out of the congested area and into parts of the body where the lymphatic system is still working properly.”
The therapist will also teach specific exercises, talk about diet and activity modification and provide an overall education on how to manage the swelling so it doesn't progress to a later stage.
Therapy typically occurs two to three times a week for about four to six weeks. It can last longer depending on the stage and how long it takes for patients to learn how to manage their symptoms independently.
The difference between nerve pain after surgery and lymphedema
Patients might mistake the signs of nerve regrowth as early signs of lymphedema, so it is important to distinguish between the two. Nerve regrowth will not cause that heavy or full feeling, nor will it cause swelling. Additionally, nerve regrowth does take time. So, if the numbness and tingling continues for several months, it is not an indication of lymphedema.
“It takes approximately one month for a nerve to regenerate one centimeter,” Abraham explains. “It can be a very slow process, depending on what part of the nerve was damaged and how far it needs to regrow. If the main part of the nerve wasn’t damaged, and there are little branches extending from the nerve, there’s a possibility that the nerve will regenerate over time.”
Radiation or chemotherapy will impact the potential for nerve regrowth and may cause additional nerve damage. Depending on the type of surgery, it could take up to one year before the sensations decrease or stop completely. However, some people do experience lifelong nerve changes following their surgery and subsequent treatments.
Treatments will impact the potential for nerve regrowth, and there is not necessarily a time when things will go back to normal.
Lymphedema can occur at any time
It is important to understand the risk factors that can increase your chances of developing lymphedema, which can occur at any time post-surgery.
“Once the lymphatic system is damaged, there is always a possibility that lymphedema could develop, though living a healthy lifestyle and knowing what signs to look out for does reduce someone’s risk,” Abraham explains. “And once you have lymphedema, it is a lifelong condition. But if you know what to look for, you can begin compression therapy early and usually remove the fluid.”
“As soon as you notice the earliest signs of swelling or you start to feel those symptoms of heaviness, fullness or thickness, get into lymphedema therapy,” Abraham continues. “If we can catch it in Stage Zero or even Stage One, it's much easier to treat.”
If you think you might have lymphedema, make an appointment with your doctor.
