„The good thing about it: I can live to a ripe old age with it“
According to conservative expert estimates, around three million people in Germany suffer from disorders of the lymph vessels.1 However, the real number may be much higher.
Because: many of those affected only notice their condition by chance. They search the Internet or contact doctors, therapists or self-help groups because of the severe swelling, particularly of their arms and legs. However, not all patients by any means are treated adequately or properly, even after the doctor has diagnosed lymphoedema.
Compression treatment for lymphoedema of the arm
Brigitte W. (name known to the editorial staff) is a patient who was correctly diagnosed early and has been given wide-ranging treatment to date. The mother of three developed breast cancer in 2007. Two lymph nodes were involved, but 14 were removed to be on the safe side. The surgery was successful, but her right arm started to swell up three weeks after the operation. When she also developed a high fever, she sought advice from her GP, who is also a lymphologist.
A stroke of luck. Because, while patients are all too often fobbed off with the explanation that the swelling is a normal complication after similar procedures, her doctor correctly diagnosed lymphoedema. She is not alone with this late complication. Based on the study data currently on file, we may assume that an average of 20 to 30 percent of patients are affected by breast cancer-related lymphoedema.2
The pillars of successful therapy: doctor, therapist, surgical appliance retailer
"It may sound strange, but I was relieved at first. I had been afraid that the cancer had flared up again", said Brigitte W. "I had no idea what lymphoedema is or what the ultimate consequences of the diagnosis were".
Her doctor immediately prescribed manual lymphatic drainage for her. This is essential for coming to grips with the severe swelling and is an important element of so-called complex physical decongestion therapy (CPD). Experts consider CPD to be the only effective form of treatment for reducing lymphoedema. Consistent skin care, special exercises and compression bandaging or compression garments complete the treatment regimen
Brigitte W. went to a special physiotherapy practice for her treatment. During the decongestion phase at the beginning of her therapy, she was given lymphatic drainage almost every day followed by compression bandaging – with success.
The circumference of her arm shrank centimetre by centimetre and after four weeks she could be measured for the first time for her compression garments by a specialist. Since then, the patient has had lymphatic drainage four times a week and wears a flat knit sleeve for about 12 hours a day to maintain the result of treatment.
"By and large we've been doing well for the last two years", says Brigitte W.
She deliberately says "we", and glances over to Regina E. (name known to the editorial staff). She is a lymph expert at a surgical appliance retailer in Augsburg and has been looking after Brigitte W. since she started therapy over six years ago. In the meantime, the women have come to trust each other implicitly. "With all that experience, she's a very important contact for me if I have any questions about lymphoedema, therapy or even about the sleeves themselves. You're grateful for any information you can get, especially at the beginning, even if you don't always particularly like some of the answers you get to your questions", says Brigitte W. For instance, the fact that her sleeve will always be her constant companion. "Ms E. nipped any false illusions in the bud right from the start. But, and that's the good thing about it, I can live to a ripe old age in spite of it. Hearing this feedback from a specialist relieved much of my anxiety".
Leading an active live with a flat knit compression garment
The patient has now become accustomed to the sleeve. Thanks to her donning aid, the sleeve Butler, putting it on in the morning has become a simple ritual. In any case, she hasn't let her lymphoedema diminish her zest for life. In her free time, she likes to go power walking, manages the self-help group Mamazone e.V. for women with breast cancer and otherwise does all those things she enjoyed doing before falling ill.
A perfect fit of the sleeve is important for achieving a good treatment result, as in Brigitte W.'s case, and ensuring high compliance. The single most important factor here is taking the measurements properly. Staff attend special courses of instruction to learn where to take the measurements, how many measurements are needed or what "measurement under tension" means.
The right timing is decisive
"It is best to take the measurements immediately after lymphatic drainage, while the patient is still in the physiotherapy practice", says Regina E. This is when you have the best result and the sleeve is the right size – after all, it has to last six months". The trained surgical appliance sales assistant has been caring for people with lymphatic disorders for 13 years.
She has further training two or three times a year to make sure she stays up to date and can give her customers the best possible advice. "I learn something new every time, be it about new materials, accessories or trends that increase the patients' compliance". There have been many positive developments here over the last few years. Recently they even introduced sleeves with patterns and bright colours (e.g. medi's mediven 550 arm in aqua, anthracite or navy blue). The motto: "Live Laugh Love" - a flash in the pan gimmick or a strong sign?
Brigitte W.’s opinion: "Personally, I find it brilliant. First, aqua is a happy colour and thus a welcome change from the drab black or brown. Second, I find the motto "Live Laugh Love" has got everything that I find important. It shows those around me that I can live to a ripe old age with lymphoedema. And that's just what I want. Brigitte W. is already looking forward to the next meeting of her self-help group, at which she can show off her new sleeve.
She's convinced that many of the women will be as enthusiastic as she is.
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1 Dr Schingale, Franz-Josef. In: Lymphoedema / Lipoedema. Diagnosis and treatment A guide for affected patients. 3rd revised edition (2007). P. 9. Schlütersche Verlagsgesellschaft mbH & Co. KG.
2 Deutsche Krebsgesellschaft e. V. (2008): Interdisciplinary S3 note for guidance on the diagnosis, treatment and follow-up care of breast cancer, Germering, Munich: W. Zuckschwerdt Verlag.
Health personnel will make the diagnosis and can prescribe compression stockings, e.g. from medi if necessary.
Your medical retailer will fit them individually for you.