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Lymphedema's Origins, Expressions and Fixes, January 9, 2006
THE AUTHORS:
Ann Ehrlich: professional medical writer with Lymphedema following breast cancer treatment.
Alma Vinje-Harrewijn: licensed physiotherapist with more than 15 years of experience and postgraduate training in MLD per Vodder, Foldi, Chikley...
Elizabeth McMahon, PhD: clinical psychologist with over 25 years helping persons with chronic medical conditions manage anxiety, depression and other emotional issues.
WHY READ THE BOOK? The self-care knowledge and techniques presented can thwart a host of illnesses in addition to Lymphedema. Also see www.lymphnet.org
EDEMA: the body's normal swelling response to an injury.
LYMPHEDEMA: abnormal swelling due to damage or improper development of the lymphatic system, which, left untreated, can become worse, dangerous or life-threatening. Primary Lymphedema is hereditary; secondary Lymphedema results from damage to lymphatic system. Treatment is the same. Onset may be immediate or delayed for years. Approximately 5 million Americans affected.
RISK FACTORS, SECONDARY LYMPHEDEMA: biopsies; burns; scars; obesity; circulatory malfunctions; fractures; joint dislocations; other injuries; paralysis; multiple sclerosis; inactivity. Cancer treatments lead in developing nations.
EARLY SYMPTOMS: infection; swelling; pitting edema; "pins & needles;" heaviness; tight skin, ring, bracelet, shoe or sleeve; shoulder/hip aching; decreased joint mobility...
STAGE1: Swollen tissues are soft, and pitting edema is present. Elevation relieves temporarily. Early treatment can improve it greatly.
STAGE2: Tissues feel firm, even hard, and pressure leaves only a slight indentation. There may be more swelling, fibrosis, infections and skin problems. Intense treatment may improve.
STAGE3: Swelling and tissue fibrosis cause the skin to harden. Folds of tissue disfigure and limit mobility. Fungal infections and open wounds develop. Intense therapy improves it or prevents worsening. Reversal is rare.
FIBROSIS: an inflammatory reaction to stagnant, protein-rich lymph, which further slows the lymph circulation, which traps more stagnant lymph and causes additional swelling. Infection risk increases.
DIAGNOSIS: 90% based on symptoms and family history. 10% require more sophisticated testing and questioning. Any heart condition will be diagnosed and treated first. Sudden swelling - could be thrombosis; slow progressive swelling of legs - could be chronic venous insufficiency; Rapidly-progressive and painful Lymphedema-type swelling - could be a fast-growing tumor. Check practitioner's credentials.
COMBINATIONS: explanation of Lymphedema interactions with obesity; lipedema; congestive heart failure; chronic venous insufficiency; dependent edema; cellulitis; diabetes; peripheral neuropathy.
SELF-PROTECTION: For the affected or at risk limb, avoid: injections, blood draws, finger pricks, IV placements, acupuncture, burns, injuries, tattoo parlors, excess weight, flying or exercising without compression garment.
TREATMENT-MLD: Manual lymph drainage moves lymph away from the affected area. Contraindicated if cellulitis, fever, infection, developing infection, uncontrolled major illnesses. More often contraindicated for the elderly due to co-occurring illnesses.
TREATMENT-COMPRESSION, FUNCTIONS: Bandages and garments maintain progress; prevent additional swelling; support natural lymph drainage; help muscles pump lymph; soften fibrotic (hardened) tissues. Remove for sleeping.
TREATMENT-PUMP: In the early 1990's Complete Decongestive Therapy (MLD+compression+self-management) was found more effective than the pump, which can increase fibrosis and displace the swelling of the limb into the trunk or genitalia. However, the (newer generation) pump can be used successfully: if therapist sees and evaluates the patient first; if MLD has already been performed on the neck, the abdomen and the uninvolved leg/arm; if there is careful monitoring for progress, fibrosis or increased swelling in surrounding tissues.
POSSIBLE CONSEQUENCES OF NEGLECT: cellulitis, erysipelas, athlete's foot, toenail fungus, orthopedic problems, fibrosis, hyperkeratosis, papillomatosis, weeping Lymphedema, lymphangitis,
lymphangiosarcomalJ(rare)
LYMPHEDEMA THERAPIST CERTIFICATION: Lymphology Assn of North America (LANA) requires 135 hours of specialized education... Prerequisite is a professional license in physical therapy or related profession.
RESOURCES: www lymphnotes.com lists treatment facilities and support groups and other resources, and provides a network. Also contact cancer support groups.
INSURANCE: Excellent chapter on Insurance; Family and Medical Leave Act; Women's Health and Cancer Rights Act of 1998.
EMOTIONS: Handling emotional challenges affects your self-management competence. Dr. McMahon's, Overcoming the Emotional Challenges of Lymphedema, is recommended. Practice relaxation; take action on problems without waiting to feel better; confine worrying to a scheduled time; talk to yourself with respect; get professionals to answer all of your questions.
SELF-MASSAGE: coordinate w/Dr. and Lymphedema therapist; does not replace MLD by trained Lymphedema therapist; technique and sequence are explained and illustrated, but you must be trained; Self-massage not recommended if...certain malignant tumors, leukemia, acute inflammation, infections, tuberculosis, toxoplasmosis, acute allergic reactions, erysipelas, thrombosis, precancerous skin conditions, chronic inflammation, thyroid disorders, bronchial asthma, dysautonomia, granulomas, or occlusive artery disease.
SELF-BANDAGING: Get instructions. Eight pages on technique, safety, materials and effectiveness. Contraindications: infection; open wounds; congestive heart failure; other.
EXERCISE: Illustrations. Precautions. Coordinate with Lymphedema specialist; Wear compression; Exercise increases lymph flow rate 15 times and combats depression & fatigue; Deep breathing moves lymph through abdomen; goal to enjoy 1-hour hike 3 times/week.
AQUATIC THERAPY: The buoyancy enables relaxation, pain decrease, additional motions, reduced joint stress, and cardiovascular system strengthening. Many precautions, guidelines.
NUTRITION: Good nutrition is essential to managing Lymphedema's stress on the body. Obesity is risky. Consume adequate protein. Stay well-hydrated.
HEALTH JOURNAL: calendar, visit records, current medications, healthcare team roster, medical history, Lymphedema records, compression garment records, hospitalization records. Helps with informing doctor and with insurance claims.
HAVING FUN: laughing; tennis; basketball; golf; bowling; travel; saunas & steam rooms (avoid); hiking; backpacking; trampolining; dancing; yoga. Limitations and safe participation are explained.
UNDERSTANDING THE LYMPHATIC SYSTEM: 22 pages of outstanding explanation and illustration. This material can improve one's self-care via own-body respect.
SUGGESTION 1: Dual-Purpose Cancer Prevention: Pre-knowledge of the Lymphedema side-effect from cancer sagas would have made more of the recipients of biopsy, surgery, radiation and chemotherapy proactive on prevention. Numerous books teach cancer prevention, and Mary Kerney Levenstein's Everyday Cancer Risks and How to Avoid Them aptly and comprehensively does this. (Enter "Mary Kerney" or "0895295059" for a quick find on Amazon.com.) Also see Singer and Grismaijer's, Dressed to Kill: The Link Between Breast Cancer and Bras, wherein lymph flow restriction is deemed culpable.
SUGGESTION 2: Read, Coping With Lymphedema by Swirsky and Nannery, 1998 - also excellent but significantly different.
SUGGESTION 3: I suggest writing booknotes (mine~5000words) for understanding, reference and retention.
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