Lymphedema Causes & Treatment
Lymphedema is an accumulation of protein-rich fluid. The lymphatic system transports fluid, excess protein, and other waste products through the body; one could say It is part of the body’s self-cleansing system.
The most common cause of Lymphedema in the head and neck is due to surgery, scarring and/ or radiation, all frequently due to a cancer diagnosis. In some cases, lymph vessels are damaged or lymph nodes are removed. All of the above can cause a blockage to the lymphatic system, resulting in fluid back up. This occurs most often at the cheeks, eyes and neck. Other symptoms that can occur due to swelling are trouble swallowing/ chewing, jaw pain, difficulty opening mouth and cosmetic concerns.
The most common cause of Lymphedema in the legs is due to surgery, heredity, poor circulation and diabetes. In some cases, lymph vessels are damaged or lymph nodes are removed. All the above can cause a blockage to the lymphatic system, resulting in fluid backup. This occurs most often in the toes, ankles and calves but can also be isolated to just one leg, one area. Thigh swelling can also occur however is more rare than lower leg.
The most common cause of Lymphedema in the hands, arms or chest is the removal of lymph nodes in the axillary area associated with a mastectomy after breast cancer. The surgery causes a blockage to the lymphatic system, resulting in fluid back-up. This occurs most often in the hands or arms and on the same side, but also in the chest and back regions. Radiation treatment can also cause damage to the lymphatic system and contribute to the excess fluid.
Any surgery that damages the lymphatic system can result in chronic Lymphedema. Infections or prolonged swelling for other reasons can cause secondary Lymphedema. Examples of other causes for swelling are blood clots in deep veins (DVTs), renal or kidney failure, or congestive heart failure. If the underlying cause for the swelling is treated and controlled, but the swelling persists, it may have develop into secondary Lymphedema.
The most common cause of Lymphedema in the genitals is due to surgery, scarring and / or radiation, all frequently due to a cancer diagnosis. In some cases, lymph vessels are damaged or lymph nodes are removed. All the above can cause a blockage to the lymphatic system, resulting in fluid back up. This occurs most often at the reproductive organs, upper thighs and abdomen. Other symptoms that can occur due to swelling are trouble urinating, discomfort with sitting, standing, laying and ambulation.
Phase one involves the immediate treatment. The goal in phase one is simply to get rid of the swelling. We use a compression pump, manual lymphatic drainage, compression bandaging, decongestive exercises, and skin care therapy. If there is an open wound or fluid draining from the skin, we would also provide wound care in this phase.
When done right, each is an effective method to reduce swelling.
Click on the word below to learn more about each treatment component.
At our clinic we use the compression pump as part of the initial treatment. The swollen limb is placed in an inflatable sleeve with eight chambers. The sleeve is connected to a machine that inflates each of the eight chambers in a specific sequence. The pressure is much lighter than that of a blood pressure cuff and can be adjusted for comfort. The patient sits in a comfortable recliner while the machine works for about 45 minutes to an hour. This treatment often results in an instant reduction of swelling in the limb and prepares us for the next step.
Manual Lymph Drainage (MLD)
Our therapists are trained in a massage technique called manual lymphatic drainage (MLD). Because the lymph vessels we need to work on are located near the surface of the skin, we can stimulate and manipulate the lymphatic system by gently massaging the area. When there is a blockage in the lymphatic system (ex. after surgery), we can re-route the lymphatic drainage by utilizing the parts of the system that is still working well. For example, if the lymph nodes are surgically removed under the arm on the right side, we can stimulate the lymphatics to drain towards the left or down towards the abdominal area.
This step of the treatment plan may be the most important in the treatment phase. We have learned that some clinics often skip this step, but our experience is that eliminating bandaging from the process usually results in sluggish progress and prolonged treatment. We strongly encourage utilizing all components of the therapy for fast and lasting results. We use a specialized multi-layer bandaging system for gradient compression. The bandages should stay on 24/7 during the treatment phase for best results. Treatment is often kick-started with either three or five days allotted for bandaging per week, but we have found that the most effective approach at the onset of the treatment is to use a five-day schedule. During these sessions, the limb gradually becomes smaller as the bandages work to reduce the swelling from fluid back-up. This results in the bandages loosening and needing to be re-applied within a day or two.
The exercises that stimulate lymphatic and venous flow are simple and can be performed in 5-10 minutes. The effects of the simple exercises are multiplied if the motions are performed while the limb is being compressed. When the muscle contracts, it then naturally expands and pushes on the lymphatics and veins from the inside against the compression bandages. This “squeezing” of the lymphatics and veins helps move fluid faster through the tiny vessels.
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Reduction Velcro Garments
If bandaging on weekly schedule is not an option, there are also Velcro closure compression garments that can be used as an adjustable alternative to compression bandages. While it is not as effective as the complete treatment, we have had patients that may drive more than an hour to get to our clinic, or do not have reliable transportation to allow for more frequent treatment. Treating symptoms at home is possible, and in those cases we help fit patients for and order the adjustable garments, as well as teach proper usage and follow up periodically.
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We do not perform surgery at our clinic, but many patients ask if there is such an option elsewhere. Unfortunately, there have not been many successful surgical methods for lymphedema. But, the condition has been getting more attention in the last few years and as a result, there are some specialized surgical methods that show promise in overall improvement.
Lymph node transfers are possible if the condition is caused by a prior removal of the lymph nodes. The surgeon takes lymph nodes from the abdominal region and moves them to the axillary area. While it is not a cure, the procedure has shown improvement in lymphatic flow.
The link below has a video that describes this procedure in more detail.
Lymphaticovenular bypass is a microscopic procedure during which a lymph vessel is connected to a vein. While it is difficult to perform, the incision is no larger than it would be for removing a mole on the skin. This bypass can be done in several places on the same limb and allows some of the lymphatic fluid to drain directly to the blood stream.
The link below has a video that describes this procedure.
Liposuction can also minimalize the effects of lymphedema. A more recent discovery is that prolonged swelling can eventually turn into fatty tissue in the skin. This fatty tissue will not go away with weight loss elsewhere in the body, so it may be necessary to perform liposuction in order to reduce the risk of recurring issues.
These surgeries are only available at more specialized hospitals and may or may not be covered by insurance. The closest surgeon that we have found to Wilmington, NC, is Dr. Bhatt at UNC Chapel Hill. https://www.med.unc.edu/plastic/about/facultystaffpages/nishant-nick-bhatt-md
Dr. Sachs at Johns Hopkins performs all three of the aforementioned surgeries. https://www.hopkinsmedicine.org/profiles/results/directory/profile/6687200/justin-sacks
Phase two introduces the maintenance components in treating lymphedema. The goal in phase two is for our patients to learn to manage the condition and prevent recurring swelling. As soon as the swelling is reduced to a minimum, we measure for compression garments. The goal with a good compression garment is to prevent the swelling from returning at all. Patients also learn relevant exercises and proper skin care. Monitoring the condition on a daily basis can be difficult, so we like to gradually increase the time between follow-up visits until we feel confident that our patients are able to maintain a normal lifestyle on their own.
Our approach in phase two is to work with our patients to solve any problems that may arise. There are many types of compression garments and tools that can be used to manage lymphedema. We want to find the methods that works best for our patients in their daily routines.
Click on the word below to learn more about each self management component.
We have found that many patients are told to elevate the swollen limb above the heart. Or to sit with the arm elevated most of the day. While this is good advice for the Lymphedema, we also believe that an active life is just as important as managing the swelling. Muscle activity also plays an important role. We recommend that our patients elevate when they are resting or sleeping as much as reasonably possible. If your favorite chair is set up for elevating the arm at home, it may come natural to elevate. This can have a big impact on the condition. Sometimes a simple habit change of where you normally sit can be what it takes.
Most patients with Lymphedema need to wear compression garments daily or the edema will return. The goal with a compression garments is that it will prevent the edema from returning, without hurting. A common error is that patients are measured for compression garments when the limb is still swollen. This would result in the wrong size garment and is likely to fail. There are many options and things to consider when choosing a compression garment. Fabric, brand, size, compression grade and even color. (if you don’t like the color, you might not wear them). This is probably the most overlooked part of Lymphedema therapy and where it often fails in the long term. For this reason we go through great length to get the garment right. Another reason compression garments get a bad reputation, is that they can be difficult to put on. We have found several good adaptive devices that can make this process much easier. Click Here to see these devices.
After trying a garment for a few days, we follow up to make sure it is working. If it is not working, we continue to problem solve. We have learned over the years that each person’s condition is unique when it comes to what it takes to manage the condition long term. We work with each unique individual to find a solution that works for them.
We recommend to continue the exercises that you learned during the treatment phase to stimulate the lymphatic and venous flow. The exercises are simple and can be performed in 5-10 minutes. Although it is simple, one can not underestimate the value of these. The effect of the exercises is multiplied if the exercises are done with compression on the limb. When the muscle contracts, it expands and pushes on the lymphatics and veins from the inside against the compression bandages or compression garments. This “squeezing” of the lymphatic and veins helps move fluid faster through the tiny vessels.
(include picture of exercising)
Self MLD (Lymphatic Massage)
Our patients can learn simple self-massaging techniques that stimulates lymphatic flow. The techniques are light and easy to learn.
Phase three is the long-term approach. While Lymphedema is considered a chronic condition, we believe that the body has an amazing ability to heal itself when given the opportunity and proper care. Our daily habits can significantly contribute to worsening or improving the condition, and our patients often struggle with other ailments in addition to the Lymphedema. It’s difficult to change one’s habits, and we have seen and heard the frustration from our patients. To better assist with the process, we offer a Lifestyle Redesign coaching program for long-term health and wellbeing. With this program, we can address eating habits, exercise and physical activity habits, sleeping, stress management, and emotional coping.
Click on the word below to learn more about each lifestyle redesign coaching component.
What does eating have to do with Lymphedema? What does occupational therapy have to do with nutrition? The simple answer is this: the healthier the body is, the better it can manage any condition. Obesity is one of the causes of Lymphedema and is difficult to deal with. Most of us have a general idea of what is healthy or unhealthy, but the hardest part is in making the necessary changes. We do not dictate what choices anyone should make, but believe that positive, manageable changes made consistently over time can have the best and longest lasting impact on one’s health. The results of drastic weight loss or lifestyle changes are often temporary. As occupational therapists, we look at the whole picture and consider current habits, support systems, and motivations. We guide and coach to find an approach to fit the unique individual. Together we set goals, measure progress, and find strategies to overcome obstacles.
What does sleep have to do with Lymphedema? Our bodies are designed to repair themselves when we sleep. A growth hormone is released when we fall into deep sleep and is responsible for rebuilding and repairing skin, hair and muscle cells, among other things. A lack of sleep means that we accumulate stress hormones that in turn increase inflammation in the body, which burdens the lymphatic system. As occupational therapists, we can teach evidence-based methods from neuroscientific studies to improve sleep through habit changes.
What does physical activity have to do with lymphedema?
Here are some of the benefits to regular movement:
- Muscle activity increases the flow of venous blood.
- Decrease stress-related inflammation.
- Improve blood sugar levels.
- Improve heart function.
- Improve the mood, which in turn leads to more spontaneous physical activity.
The list goes on. Exercise does not need to be grueling or boring. We coach our patients to find ways to integrate more physical activity in their daily lives and in a way that fits their current habits, interests and ability.
What does relaxing have to do with managing Lymphedema? Most of us deal with a lot of stress. Chronic stress releases inflammatory hormones and has a long list of known negative effects on our physical health. We teach evidence-based techniques for managing chronic stress and increasing stress resilience based on neuroscientific studies. We use mindfulness-based training, bio-feedback, time management, and coping techniques.
What does your social life have to do with Lymphedema? It is proven that when we have positive social interactions we live longer and healthier, but this is not often addressed in treatment plans. Illness or aging can lead to isolation, and when this is an issue, we manage this through coaching and coping techniques.
Managing Other Conditions
Many of our patients have other chronic conditions like diabetes, COPD, heart disease, arthritis, depression, or anxiety. It can be overwhelming to handle all the medicine, appointments and advice by different specialists without a support system. We can help coach our patients and navigate them through all of this so that they retain time and energy for everything else.