QUESTION FROM READER:LYMPHOEDEMA: WHAT CAN HELP?

Q:I would appreciate it if you would put before your panel of medical experts the question of treatment for lymphoedema. I am aware there are different causes. However, I am particularly interested in lymphoedema resulting from the removal of the l

How appropriate is the drug Frumil for counteracting water retention caused by the removal of lymph glands from the groins, which was undertaken to prevent the spread of cancer? I’d also like to know the long term side effects on the human body of the absence of lymph glands in the groins and any natural remedies available to alleviate these effects. J O, Burntwood, Staffordshire…..

A:The lymph system is essentially your waste disposal system. As the blood fluid system flows through all your body’s tissues, it picks up waste in the course of nourishing all the cells and then drains this waste from any spaces between cells and any excess fluid via the lymphatic system, which returns it to your cardiovascular system. The lymph glands also produce lymphocytes, which play a vital role in your immune system.

Lymphoedema (or swelling in the lymph system) occurs whenever this drainage system doesn’t work properly and the waste and fluid gets backed up, liked a blocked sewer. Nevertheless, there is always some sort of drainage, however limited, and the body always attempts to establish an alternative route. According to the British Lymphology Interest Group, lymphoedema usually results when the body fails to set up a workable alternative route to keep the waste flowing out.

The most common cause is some sort of damage to the lymphatic system, through tumours, surgery or radiation. Women who have had a mastectomy often suffer from it. Although any area can swell up, the most common sites are the limbs because there are fewer routes for this waste disposal system to exit.

The greatest difference between lymphoedema and other forms of chronic edema is that it isn’t just simply due to water retention.

The body’s tissues also accumulate waste products, fibrosis and fats, and there is inflammation as well. These “hard” products are what make treating the condition so difficult. The usual response of doctors is to either prescribe diuretics like Frumil (which aren’t indicated for this condition and don’t do much good as the problem is more complicated than simply excess fluid) or, as in most cases, simply throw up their hands.

The other usual methods include surgery, either the conventional sort to remove waste and fluid (called “debulking”) or microvascular surgery, in order to create lympho venous shunts, or new pathways. Nevertheless, to date, surgery has met with little long lasting success, and is generally considered no better than conservative treatment for all but the most extreme circumstances, when the patient has a limb that is grossly swollen and infected.

This tends to include compression stockings or gloves elastic hosiery whose job is to reduce the formation of new fluid and waste products and to improve the efficiency of muscle “pump” flow.

Although a damaged or removed lymph system means the situation is incurable, the British Lymphology Interest Group offers a four point treatment plan which can minimize swelling and avoid infection.

They advocate using elastic hosiery for compression, and an exercise programme to maximize lymph drainage. It’s important that you don’t overexert yourself or your body may swell up again.

Doing your own simple massage next to any swelling will stimulate your lymph glands to drain and reduce the swelling in the congested region. Taking care of your skin will also help the tissues stay in good condition and reduce the chances that they will get infected.

For more serious cases, one of the most successful methods is manual lymphatic drainage (MLD) massage, which has been long accepted in Europe. This sort of special massage stimulates lymph drainage and can be given by a therapist trained in MLD, so long as he or she has worked with lymphoedema.

This technique is far different from the sort of lymphatic drainage performed by many masseuses in beauty clinics. It’s also more specialized than the sort of massage you might get at your average cancer unit.

If a physiotherapist has been trained in this technique and you follow some of the other recommendations, it can have impressive results.

In one case, a 44 year old woman was referred to a special lymphoedema service with a two year history of gross lower limb lymphoedema in both legs, 12 years of it in the right leg and recurrent celluitis (infection).

She’d been treated with repeated courses of antibiotics for the infections; compression stockings and limb bandaging had been unsuccessful. She had been offered surgery but refused.

Both legs were hugely swollen, which greatly limited her mobility and caused psychological upset. Both legs had ulcers and one was infected.

She was admitted to a specialist centre. After the ulcers and infection were treated and dressed, she was given specialist massage, multilayered bandaging and exercises. For a week she had daily treatments, and afterward she was given them twice a week as an outpatient.

After six weeks, the volume of lymphoedema in her legs had reduced by 910 mls on the left leg and 2.3 litres on the right.

Again, it’s vital that you get hold of specialist physiotherapists who have specialist training in working with lymphoedema.

For more information, you can also contact the Lymphoedema Support Network, St Luke’s Crypt, Sidney Street, London SW3 6NH, tel (and fax): 0171 351 4480). They actively campaign for a better deal for lymphoedema patients, and offer telephone helpline with advice and support to all who contact them. They also hold meetings with guest speakers who have special interest in or expertise in this distressing condition.