Lymphoedema is a long-term (chronic) condition that is incurable, and often debilitating condition that can affect the sufferer both mentally and physically altering their quality of life. However, there is hope as it can be managed with the assistance of a knowledgeable therapist and supportive primary care team.
Lymphoedema often occurs from a damaged or deranged lymphatic system, resulting in an accumulation of excessive amounts of protein-rich fluid in a limb(s). Such swelling can place intense pressure on surrounding tissue as this stagnated proteinaceous fluid can decrease the amount of oxygen available to cells which in turn can enhance bacterial growth to develop and allow formation of wounds or other infections to take hold. Sequentially, the extra proteins can cause chronic inflammation in tissues, leading to fibrosis, scarring and other abnormal skin changes if left untreated.
Lymphoedema if different to ordinary oedema in that the excessive abundance of fluid stems from an imbalance between the demand for lymphatic flow and the overall capacity of the lymphatic circulation (lymphatic load). When lymph load is too great, fluid accumulates in the intercellular spaces rather than draining back into the blood stream. Oedema on the other hand is characterised by excess fluid collecting in the cavities or tissues of the body, typically there is an underlying medical condition that is the primary cause i.e. can occur after trauma to an area of the body, heart failure, renal failure or venous insufficiency to name a few.
Lymphoedema is primarily due to a genetic, fault within the lymphatic system known as primary lymphoedema, or due to an acquired condition caused by damage or compromise to an individual’s existing lymphatic system known as secondary lymphoedema.
Secondary lymphoedema can often be caused by the surgical removal of lymph nodes, radiation therapy and chemotherapy, such as during cancer treatment. However, it can also result from recurring infections, high blood pressure, DVTs, being overweight, trauma, lack of movement or limb dependency, parasites, or even allergic reactions.
Such health issues can cause an increased pressure on the lymphatic system setting it into an inflammatory state and causing lymphatic valve compromise.
The lymphatic system functions via a negative pressure system that is assisted by valves, muscle pump pressures from surrounding tissue contraction, and chemical feedback loops similar to the veins of the lower leg. Valve incompetence, and poor muscle contraction can lead to lymph backflow towards the skin. Once the swelling begins to develop, or how it progresses varies from person to person, it can stay in a steady manageable form for months to years, with fluctuations and deteriorations determined perhaps by environmental i.e. heat/cold, treatment modalities, and pathological influences.
What is certainly crucial is that lymphoedema is identified and treated as soon as possible. If it isn't treated, it can worsen, and outcomes may not be achievable.
What treatment is available?
Treatment for lymphoedema needs to be intensive and lifelong commitment. Although lymphoedema cannot usually be cured, but it can be managed. Benefits can be obtained from the treatments outlined below, but if any of these are stopped then problems tend to re-occur.
Manual lymphatic drainage (MLD) - Intensive massage by practitioners trained in specific techniques is helpful in managing lymphoedema. This therapy may need to continue for some weeks until the decrease in swelling is satisfactory. Although time consuming but is one of the most effective treatments in reducing limb volumes and it is something that individuals can do themselves or include carers or other loved ones to participate in such cares.
Compression bandaging and stockings - Compression bandaging is used in severe swelling cases and often forms the initial intensive phase of care. It is crucial in maintaining the benefits produced from massage. When swelling is sufficiently reduced then the person is often transferred into graduated high compression stockings to help prevent swelling from re-accumulating once it has been reduced.
Drugs – Medication treatment for lymphoedema is rarely helpful. Water tablets that promote more urine production are generally ineffective for lymphoedema, as it is a dysfunctional lymphatic system resulting in a protein imbalance rather than water imbalance. Patients will of course pass more urine but swelling remains. This is because there is a functional problem present in the lymphatic system.
Surgery – Surgical interventions are showing promising results, but are not suitable for all persons. Despite these three main types of operations have been developed. Firstly, lymphatic transplant operations, where lymphatic vessels from a normal limb are surgically transferred into the affected area. Secondly, lympho-venous anastomosis, where an existing, but blocked lymphatic vessel is joined to a vein. Thirdly, liposuction for excess superficial tissue is sucked out between the skin and muscle layers. (This is most beneficial in the middle, fatty stage of lymphoedema.)
Skin Care and control of infection - it is important to keep our skin in good condition. Regular/diligent hygiene practices help reduce fungal/bacterial infections. Avoid heavy accumulation of dry skin, which can promote bacteria to grow and skin cracking allows infections to take hold. Simple moisturising creams can be helpful for such skin. It is vital to take minor wounds seriously and not to allow them to develop into serious problems.
Weight loss - many lymphoedema patients suffer weight issues due to a vicious cycle of poor mobility, joint issues or fatigue in carrying/caring for an over swollen limb(s). This situation compounds any existing problems and weight loss is essential to achieve benefits from any other treatments.
Psychological supports – It can be beneficial to find a wound care nurse or primary care physician that is aware of such conditions as they are uniquely positioned to help address psycho-social issues in such patients.
They are perhaps more acutely aware of the burdens of self-care, the feelings of low self-esteem, the lack of control when managing the lymphoedema and the vital need for intervention by a supportive primary health care team of social workers, therapists, counsellors/psychiatric professionals, pain management, nutritionists, exercise advisers and wound care nurses or chronic disease nurses.
Final note: Our clinic assesses patients individually and offers a unique treatment and follow-up service for patients living with lymphoedema. We will develop a treatment plan that best suits your individual needs.
Please note a fee is applicable for all lymphoedema treatment with our specialist nurse and for consumables if required.
Advanced Wound Care Service
Available at Toukley Family Practice and Mariners Medical in Tuggerah, Advanced Wound Care Service (AWCS) provides thorough assessment, treatment and management of complex chronic wounds that are proving difficult to heal, and is the only service of its kind available on the Central Coast located in a General Practice setting.
To make an appointment, call 4352 8600
By Sharon Bradshaw
AWCS Wound Care Nurse.
MSc Tissue Viability, BSc Hons Biology, Dip RN, Lymphoedema Level 1 Cert