Pathways Summer 2012 (Volume 1, Issue 2) by Canadian Lymphedema Framework

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Canada’s Lymphedema Magazine

Pathways

SUMMER 2012

Empowering patients and professionals

New international ‘best practice’ compression document

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Editor’s Message

It Takes a Village...A Global Village t takes a village to raise a child and a global movement to raise an issue. The international movement to improve standards and access to lymphedema care, was initiated by England’s International Lymphoedema Framework (ILF) in 2002.

Dr. Bose, Director of the Institute of Applied Dermatology (IAD) in India several years ago. We have much to learn from India’s model of an integrated and holistic approach to lymphedema treatment. The Canadian Lymphedema Framework (CLF) and its provincial affiliates will need to work hard to disseminate the We’d love to hear your suggestions Best Practices in Canada. on how we can make Pathways more A CLF 2010 survey of relevant to you. health professionals providing lymphedema care, indicated that clinical guidelines for Their philosophy is that progress can only lymphedema are not well integrated into be made when all stakeholders; health practice. In fact, only 40% professionals, patients, community based of respondents reported organizations and industry partners work following the International in collaboration. Seven countries are now Best Practice guidelines in various stages of implementing this and 26% reported model—the lymphedema village has not following any indeed gone global. clinical guidelines Experts from many different countries at all. To this end, have collaborated again for the much we all have a responanticipated update to the ILF’s Best sibility to share this Practice document. Choosing the topic magazine with of compression as the first component everyone involved of a comprehensive compendium of in lymphedema care, both documents, emphasizes the pivotal in public and private practice, to role that compression promote education for lymphedema and plays in lymphedema adoption of the lymphedema management management. Best Practice guidelines. I was pleased to The rest of this issue’s contents demonsee India’s innovastrate the enthusiasm we have received tions to treatment from both Canadian and International highlighted, as it was lymphedema experts who are so willing my privilege to meet to share their knowledge and expertise. David Keast writes how movement of

fluid between tissue space and capillaries and lymphatics is much more complex than originally thought. I am hopeful that new learnings of how the vascular and lymphatic system are so intricately intertwined, will encourage a greater interest among researchers to focus on lymphology. Angela Vollmer points out that prescription of medical compression requires a working relationship between the patient, physician, therapist and fitter. It is encouraging that there are now many choices of compression garments available for both day time and night time wear. John Mulligan shares what some of the options are for patients who can benefit from night time compression alternatives to bandaging. Roanne Thomas and Liz Quinlan share their creative form of arts-based research that explores the impact of lymphedema on all spheres of life. Erin Pinnell personally understands how living with lymphedema requires some life style changes and reminds us that these changes force us to accept “living the new normal.” As a person living with lymphedema, I appreciate the advice Janice Yurick gives on coping with lymphedema during travel and summer temperatures. I’ll be sure to incorporate her practical tips into my summer living. I hope you think we have struck the right balance of informative and educational articles that relate to all the various readers of this magazine. We’d love to hear your suggestions on how we can make Pathways more relevant to you. Won’t you give us a call? LP

Anna Kennedy Summer 2012

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Contents

Lymphedema

Pathways Empowering patients and professionals

Summer 2012 ■ Volume 1 Issue 2

Publisher Pathways is published four times per year by BCS Communications on behalf of the Canadian Lymphedema Framework (CLF) and its provincial affiliates. Editorial Board David Keast MD FCFP Winkle Kwan MD FRCPC Martina Reddick RN CDT Roanne Thomas PhD Anna Towers MD FCFP Lucette Wesley CIM Janice Yurick PT Editor Anna Kennedy Editorial Assistant Shannon Moore Advertising and Submissions We welcome your ideas, contributions, letters and ad copy. All material is subject to Editorial Board approval and inclusion does not constitute an endorsement nor reflection of the views and opinions of the CLF and its Editorial Board. Contents may not be reproduced without written permission of the Canadian Lymphedema Framework. Subscription Rates (1 year) Canada–$25. International–$50. Single copies and back issues–$7. Subscriptions/return mail to Canadian Lymphedema Framework 4161 Dundas Street West, 1st Floor Toronto, Ontario M8X 1Y2 Telephone: 416-410-2250 Email: canadalymph@live.ca www.canadalymph.ca

International Best Practice Management of Lymphoedema 2nd Edition The International Lymphoedema Framework releases their updated position document on compression therapy.

The Science of Compression Mobilizing interstitial fluid

The movement of fluid between the tissue space and the capillaries and the lymphatics is much more complex than previously thought.

Ethnodrama Lymphedema and theatre

Theatrical presentations to tell powerful stories of women’s experiences of lymphedema after breast cancer.

Ask the Expert Summer living

Tips to help manage the vacation challenges of heat and travel.

Prescribing Compression Garments for Lymphostatic and Venous Edemas Use of the correct compression garments is an essential prerequisite for adequate results in long-term therapy.

Cover Image: Valco Some photos in this issue are courtesy of Valco, BMeimari, DTidhar, Juzo, Lymphedivas and Peninsula Medical Inc.

Canadian Publications Mail Agreement 40065546 ISSN 1929-1418 Printed in Canada

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Lymphedema Never Sleeps Nighttime compression We spend one third of our lives asleep in bed; lymphedema still requires management.

20 Summer 2012

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Clinical Perspectives

Best Practice for the Management of Lymphoedema–2nd Edition

Compression Therapy: A position document on compression bandaging By Christine Moffatt and Deborah Glover

anaging lymphedema and chronic edema presents a challenge for the health care professional, the person living with the condition and often, their family. As yet, there is no cure, but recent research and growing awareness of the condition has however, offered wellfounded interventions to both reduce swelling and ameliorate the associated side effects. The second edition of the 2006 document Best Practice for the Management of Lymphoedema,1 entitled

‘Best Practice for the Management of Lymphoedema - 2nd edition: Compression Therapy: A position document on compression bandaging’, represents an international multidisciplinary initiative led by the International Lymphoedema Framework (ILF) in association with the Canadian Lymphedema Framework (CLF) and the American Lymphedema Framework Project (ALFP). It has contributions from expert practitioners who deal with lymphedema on a daily basis across the world, and the recommendations

contained within it are based on physiological principles and the current evidence base. The document contains broad practice standards applicable to the international lymphedema community, which will be used for future review, consensus building, and translation.

partners agreed that while we are working towards a consensus on terminology in respect to lymphedema, for the purposes of the document, terms such as Decongestive Lymphatic Treatment (DLT) (also known as complete decongestive therapy (CDT) or complex decongestive physical therapy)

The document contains broad practice standards applicable to the international lymphedema community. Creating a second edition Of course, producing a document that can be used in any country or setting, be it resource rich or resource poor, has its problems! For example, terminology often varies between countries, issues of reimbursement are complex, and often, Western approaches to treatment and access to resources such as bandages, are neither possible nor desirable in some countries. In order to address some of these issues, the ILF and its international framework

would be used. What we can all say with some confidence, is that as recommended by the ALFP’s recent systematic review, improved clinical trials and the ability to understand the relative contribution of the different aspects of treatment is required. Lack of reimbursement for lymphedema care due to the dearth of research is a major international challenge and compromises access to appropriate compression bandaging in many parts of the world. In developing countries, the cost of bandaging is often

Christine Moffatt CBE FRCN PhD MA RGN DN is Professor of Clinical Nursing and runs a regional lymphedema clinical service in Nottingham University, Derby, England. She has been conducting research for 25 years in wound healing and lymphedema and is currently Chair of the International Lymphoedema Framework. Christine is an honoured CBE (Commander of the British Empire). Deborah Glover RGN is an independent editorial and nurse advisor. As part of her portfolio, Deborah was the past editor of the Journal of Wound Care and is currently the Editor of the Journal of Community Nursing. She is also a Trustee/Director of the International Lymphoedema Framework.

Summer 2012

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prohibitive. In our document, an example of how this has been overcome in India is presented, despite poor access to health care, and the creative approaches to management that involve self care and involvement of family and the local community have much to teach the western world (Box 1)! What’s in it? Those of you familiar with the first edition of the Best Practice Document,1 will realize that this second edition only covers one aspect of DLT, namely compression bandaging. The editorial committee felt that a large, bulky document which tried to cover all aspects wouldn’t do justice to the needs of patients and practitioners world-wide. Therefore, it was decided to

build a compendium of individual, in-depth documents on topics which fall under the DLT ‘umbrella’. In 2012, we are producing documents on compression, surgery and exercise. Each discreet section, building into a final 12-topic document, provides a model for best practice in the assessment, treatment and continuing management of lymphedema. Topics covered in the Compression document include: • A contextual view of compression bandaging for lymphedema Christine Moffatt, UK • An overview of the science behind compression bandaging for lymphedema and chronic edema Hugo Partsch, Austria and Christine Moffatt, UK

• Optimizing compression bandaging Jan Schuren, Netherlands • Adapting compression bandaging for different groups Isabel Quéré, France and Margaret Sneddon, Glasgow • Dermatological issues in lymphedema and chronic edema Mieke Flour, Belgium • How to adapt compression bandaging for the palliative patient Anna Towers, Canada • Compression therapy in Indian villages SR Narahari, India; Terence Ryan UK, K Vivekananda, and Pierre Brantus, France

continued on page 8

Box 1: Approaches to care in Indian villages In India, lymphedema is endemic in villages and patients have to travel hours to reach a primary health centre. Providing compression is a skilled job and such expertise is not generally available, even in Indian cities. The Institute of Applied Dermatology (IAD) (www.iad.org.in/) has developed an integrative treatment combining the benefits of western biomedicine and the traditional Indian practice of Ayurveda and yoga to treat large numbers of lymphedema patients in Indian villages. Compression bandaging is part of IAD’s integrative treatment of lymphedema. Initially patients and their family members are taught about compression, particularly the figure of eight technique, using a dummy. Daily sessions take place from day seven of supervised care. All materials necessary for compression and the role of these materials are discussed. An outline of how to manage constriction, rolling and numbering of bandages (to identify wear-time/durability) is included. Videos of how to undertake compression are shown and patients and their home care givers participate in role play, using each other’s normal limbs to practice on. From day nine of supervised care, compression is practiced on the patient’s affected limb (Figure 1). A practical demonstration is given, including toe compression, cloth wrapping, CCF sheet preparation and placing, preparation of de-kinking materials. In the theory class, disinfection methods and durability of bandages and other accessory materials are discussed. The issues arising out of improper bandFIGURE 1 aging techniques are repeatedly emphasized.

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Summer 2012

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New insights into compression bandaging for lymphedema This document contains new insights into the way in which bandaging acts in the control of edema. New research is moving towards a clearer understanding of an “ideal” or an “intelligent” bandage or compression system and will allow new technologies to be developed in response to this insight. The document challenges some of the traditional dogmas in compression bandaging and provides clear recommendations on how compression can be effectively used for the complex patient groups seen in clinical practice who require different pressure profiles. The lymphedema population is becoming more complex due to factors such as increased age, concurrent health problems, morbid obesity and decreased mobility. Professionals must be equipped to use compression bandaging in adaptive and

New research is moving towards a clearer understanding of an “ideal” or an “intelligent” bandage or compression system and will allow new technologies to be developed in response to this insight. effective ways to ensure the optimum outcome is achieved.

lymphedema and associated side-effects. Research in the United Kingdom and

The document will present a set of summary statements which relate to best practice for compression drawn from each chapter. An example of those regarding compression is shown in box 2 below.

Canada show that many lymphedema services are treating more complex patients with multiple co-morbidities and continue to be referred patients who have not been diagnosed or offered treatment.2 It is also universally acknowledged that traditional bandaging used in DLT requires considerable commitment from sufferers to attend for daily treatments, and that the treatment itself may restrict their work and social activities. This document presents recent research which suggests a new compression method enabled only twice-weekly treatment, clearly a bonus for all concerned and information that needs to be out there! Presenting and recommending such innovations is at the philosophy of the new document. We want as far as possible, all practitioners and people with lymphedema, to be able to use the tools and resources they have in the most appropriate and effective way, taking into consideration personal, local and national issues. We will be launching the Compression and Surgery documents at the ILF conference in Montpellier (France) in June. The document will also be available on the ILF website from July 2012. LP

Summary Management of complex lymphedema requires highly skilled, specialist practitioners to work in partnership with the patient and family to facilitate timely and appropriate management of both the

Box 2: Summary statements—compression ■ Chronic edema and lymphedema needs continuous compression; if compres-

sion is discontinued, edema will recur. This is also true after liposuction and most other surgical procedures. ■ Self-management is a goal based on important psychological and economic

advantages; thus, patient education to underline the importance of compression and movement (structured exercises) is essential. ■ The initial therapy phase should use compression adjusted to the underlying

pathology, limb size and to the local background concerning practical feasibility. ■ Inelastic bandages (applied by trained people) should not impede joint

movement; re-bandaging is determined by the amount of edema reduction (pressure fall) and the local facilities. ■ When edema reduction is optimized, compression

needs to be continued using made-to-measure (preferably inelastic, flat-knitted) compression sleeves. ■ Compression should always be

accompanied by the other components of DLT, especially exercise, to enhance functionality and the decongestive effects; skin care is required to prevent (recurrent) infections which will worsen lymphatic drainage.

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References 1. Lymphoedema Framework. Best Practice for the Management of Lymphoedema. International Consensus. London: MEP Ltd; 2006. 2. Morgan PA, Murray S, Moffatt CJ, et al.The challenges of managing complex lymphoedema/chronic oedema in the UK and Canada. Int Wound J. 2012; 9:54–69.

Summer 2012

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Technical Sciences

The Science of

Compression By David Keast

e know that compression therapy works to reduce and control edema in extremities but how does it work? Understanding the science of compression begins by examining how fluid moves between the blood vessels, the lymphatics and the tissue space. This movement of water, proteins, nutrients and waste products is critical to tissue survival. This is an integrated system and the arteries, veins, capillary bed and lymphatics cannot be considered in isolation.

Forces moving tissue fluid Fluid only moves if it is pushed or pulled. The force pushing fluid is called hydrostatic pressure. We know that the deeper we go in a swimming pool the greater the force of the water above us. Similarly the force of gravity on the column of fluid in the blood vessels when a person is standing or the leg is dependent exerts a hydrostatic force on the fluid, the capillary hydrostatic pressure. Also if more fluid is forced into a confined space there will be increased hydrostatic pressure within that space. Thus as fluid accumulates in the interstitial space (the fluid in the spaces between the cells in the tissue), the interstitial fluid hydrostatic pressure increases. Water is also pulled between the capillaries and the interstitial space. The capillary walls are semi-permeable membranes allowing small molecules such as water to pass through but restricting the

FIGURE 1

movement of larger molecules such as proteins. Water moves across the membrane pulled in the direction of the higher concentration of proteins. This force is called the colloid oncotic pressure.

In his original work over 100 years ago Starling described an equilibrium in which there was net filtration of water out of the arterial side of the capillary bed and net re-absorption of fluid on the

The plasma proteins exert a plasma colloid oncotic pressure pulling water into the capillaries while the proteins and macromolecules in the interstitial space exert a tissue oncotic pressure pulling water into the issue space. These forces pushing and pulling fluid between the capillaries and the tissue spaces are sometimes called Starling Forces, named after a British physiologist who described the mechanisms of body fluid shifts. The other key component of tissue fluid handling is the lymphatics. Figure 1 shows the relationship between the capillary bed and the lymphatics. The lymphatic capillaries have a unique structure where the cells making up the wall of the lymphatic capillaries are tethered to the extracellular matrix. As the tissue hydrostatic pressure increases, this tethering causes portals to open into the lymphatics allowing the passage of water, proteins, macromolecules and cellular debris into the lymphatic capillaries.

venous side as a result of the balance between capillary and tissue hydrostatic pressures as well as plasma and tissue colloid oncotic pressures. Based on calculations it was postulated that approximately 80–90% percent of interstitial fluid was reabsorbed by the venous side of the capillary bed and 10–20% was handled by the lymphatics. Newer research has shown, however, that in the extremities capillary hydrostatic pressure is never less than the tissue hydrostatic pressure and

David H. Keast MD FCFP is the Medical Director of the Chronic Wound Management Clinic at St. Joseph’s Parkwood Hospital in London, Ontario. He is Clinical Adjunct Professor of Family Medicine, Schulich School of Medicine and Dentistry, Western University (London) and Centre Director, Aging Rehabilitation and Geriatric Care Research Centre, Lawson Health Research Institute. He is Co-director of the Canadian Lymphedema Framework. FIGURE 2

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that under normal circumstances there is no net re-absorption of fluid into the capillary bed. To further complicate the equation, the movement of proteins and other larger molecules across the semi-permeable membrane of the capillary walls is much more dynamic than previously thought. Newer models of tissue fluid balance suggest that in fact 100% of tissue fluid is handled by the lymphatics.1 In other words there is a net filtration of fluid out of the capillary bed with the vast majority of this fluid being reabsorbed by the lymphatic system. Venous return and lymph propulsion The second key component of an understanding of the science of compression is to appreciate how blood is moved back towards the heart in the veins and how lymph fluid is propelled towards the thoracic duct which returns fluid to the venous system at the junction of the left internal jugular and left subclavian veins. Again this is an integrated system and the vascular system and the lymphatics cannot be considered in isolation. In the extremities the venous system consists of superficial veins and deep veins connected by perforators. All veins have a series of one way valves which when functional prevent the backflow of blood. The superficial veins are in the subcutaneous tissue and the deep veins are within the muscle compartment of the extremity separated by connective tissue called fascia. When the muscles contract they push the blood in the deep veins forward towards the heart and the valves prevent backflow. When the muscle relaxes the pressure in the superficial veins is greater than in the deep veins and blood flows along the pressure gradient from the superficial veins into the deep veins, filling them for the next contraction of the muscles. This is sometimes referred to as the “Second Heart” as the function is completely analogous to that of the heart (Figure 2). The venous system may fail due to primary or secondary valvular incompetence (or Summer 2012

How compression works Our understanding of the mechanism of action of compression therapy on the mobilization of tissue fluid is heavily dependent on venous research. However as previously discussed, the management of tissue fluid is an integrated system and the management of lymphedema is closely related. It has long been believed that compression therapy mobilized tissue fluid through a pressure gradient with higher pressure at the distal extremity tapering to a lower sub-bandage pressure proximally. The Modified Law of Laplace was used to predict sub-bandage pressure. This law predicts that sub-bandage pressure will increase as the number of layers increases and as more tension is applied to the bandage. Conversely as the limb circumference increases and as bandage width increases according to Laplace’s law the sub-bandage pressure should decrease. Since the circumference of the limb increases as we move closer to the trunk, sub-bandage Pierre-Simon Laplace pressure is predicted to decrease. In the lower extremity calculations using Laplace’s Law predict that correctly applied high compression systems should provide sub-bandage pressures FIGURE 3 graduating from 35–40 mm Hg at the ankle the collector between the valves is known decreasing to 15–17 mm Hg at the knee as a lymphangion, and this has intrinsic on the average limb. In 2008 Schuren pacemaker activity. Intrinsic contractions and Mohr reported on three studies with a of the muscle occur 6–10 times total of 744 applications of various per minute propelling the lymph compression systems to a lower fluid away from the extremity. limb model. In only 7.1% of the Unidirectional flow is ensured by applications was graduated the valves (Figure 3). Skeletal compression observed.2 muscle activity, pulsations of If we consider the limb to adjacent arteries, body movebe a fluid filled container ments and respiration all play a role then sub-bandage pressure Blaise Pascal in normal lymph transport. Lymphatic may be better explained by failure may result from congenital Pascal’s Law. Pascal’s law states that presabsence or malformation of the lymph sure applied anywhere on a non-flowing vessels or may be secondary to obstruction, fluid in a closed container will be transtrauma or tissue damage, infection, mitted equally in all directions. To test this inflammation or from overload due to Schuren and Mohr applied a short stretch venous dysfunction. bandage system on healthy volunteers with leaky valves in the veins), obstruction or muscle pump failure. The blind lymphatic capillaries join to form lymphatic vessels. The initial lymphatic capillaries lead to larger lymph collector vessels that have a smooth muscle layer and valves. The functional unit of

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sub-bandage pressure sensors at the bottom, middle and top of the leg.3 They found that when pressure was applied at the top of the bandage over the upper sensor by inflating a blood pressure cuff, the incremental pressures were transmitted equally to both other sensors. If tissue fluid is not mobilized by graduated pressure under the bandage then how does compression work? Again research has largely been done on venous disease but the results can be extrapolated to lymphedema. If we place a sensor just above the ankle on the inside of the leg and measure sub-bandage pressures with activity an explanation becomes apparent.

Working pressure Static stiffness

Resting pressure

COMPRESSION 101 Short stretch bandage systems have several effects on venous return: 1. By reducing the cross-section of the veins blood volume in the legs is reduced 2. Improved valvular function reduces reflux and decreases hydrostatic pressure in the veins 3. Venous flow velocity is increased through enhancement of calf muscle pumping activity. 4. Tissue hydrostatic pressure is increased leading to decreased net filtration.

There are also beneficial effects on the lymphatic system: 1. Reduction of venous congestion decreases net filtration and fluid load on the lymphatic capillaries 2. Increased interstitial tissue fluid hydrostatic pressure increases tension on the anchoring filaments which will be pulled open 3. Enhanced muscle pump activity will improve lymph propulsion though the lymph vessels 4. Down-regulation of inflammatory cytokines leads to breakdown of fibrosclerotic tissue.

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FIGURE 4

When the subject stands up from lying position the sub-bandage pressure rises. The stiffer the bandage (shorter stretch) the more the sub-bandage rises. The difference in pressures is called the Static Stiffness Index (Figure 4). When the calf muscle is exercised, with contraction the sub-bandage pressure rises to the Working Pressure because the bandage is essentially rigid and resists the contraction. When the muscle relaxes the sub-bandage pressure drops. This rising and falling pressure with activity produces a pumping action enhancing the normal pumping action of the calf muscle. Elastic systems have higher resting pressures and lower working pressures because the bandage expands to accommodate the contracting calf muscle. For these reasons elastic systems are less effective and are less well tolerated by patients. Key points In summary, newer research has shown that interstitial tissue fluid is mostly handled by the lymphatics not the venous side of the capillary bed as previously thought. The movement of fluid between the tissue space and the capillaries and the lymphatics is much more complex than previously thought. Compression was thought to work through

graduated compression of the limb as predicted by the modified Law of Laplace but this has not been observed in sub-bandage pressure measurements. Rather the limb behaves as fluid filled closed container with sub-bandage pressures transmitted equally in all directions as predicted by Pascal’s Law. Short stretch bandage systems are most effective in mobilizing interstitial tissue fluid. They work primarily by enhancing muscle pumping function and increasing interstitial tissue fluid hydrostatic pressure. This article is only a brief review and more detailed information can be obtained from the International Lymphedema Framework Best Practice Document to be found at www.lympho.org. LP References 1. Levick JR, Michel CC. Microvascular fluid exchange and the revised Starling principle. Cardiovascular Research. 2010; 87:198-210. 2. Schuren J, Mohr K. The efficacy of Laplace’s equation in calculating bandage pressure in venous leg ulcers. Wounds UK. 2008; (4)2:38-47. 3. Schuren J, Mohr K. Pascal’s law and the dynamics of compression therapy: a study on healthy volunteers. Int Angiol. 2010; 29(5):431-435. Summer 2012

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Research Advances

Learning about Lymphedema through Theatre By Roanne Thomas and Elizabeth Quinlan

esearch on lymphedema teaches us what it means to be embodied. Embodiment represents the intersection of physical, emotional, and social aspects of people’s lives. Previous research from a national study of arm disability confirms that breast cancer survivors’ pain, range of motion restrictions, and lymphedema impact all spheres of life, including relationships, leisure, and work. The national study also shows that there is a lack of awareness about the impact of lymph-edema. With a new research team, we are using ethnodrama to tell powerful stories of women’s experiences of lymphedema after breast cancer to audiences of cancer survivors, their families, and healthcare providers. Ethnodrama transforms stories into scripts performed by research participants who convey their embodied experiences. The audiences reflectively form their own ideas and beliefs through their spontaneous, embodied responses to the performances.

In our study, we are using ethnodrama to explore the impact of lymphedema following breast cancer treatment. Seven survivors participated in the script development workshops. These women created collages and mini-installations to illustrate lymphedema experiences. Drawing upon the workshop findings, dramatists then created a script. Four of the original seven women courageously agreed to participate in live performances in Saskatoon, Saint John and Regina. Watch for English and French performances coming soon to Montreal, Ottawa, and Toronto. Or, view the video and related interviews on our team’s interactive website: www.breastcancersurvivorsethnodrama.ca and download articles reporting on the original, national study at www.roannethomas.ca. This study has been supported by the Canadian Institute of Health Research and the Saskatchewan Health Research Foundation. LP

Roanne Thomas PhD, is a Canada Research Chair in Qualitative Health Research with Marginalized Populations in the School of Rehabilitation Sciences at the University of Ottawa. Her research focuses on the psychosocial impact of chronic illnesses, such as lymphedema. Elizabeth Quinlan PhD, teaches and researches in the Department of Sociology, University of Saskatchewan. Her research uses arts-based methods to foster hope, increase resiliency, and enhance quality of life for care recipients and providers.

Summer 2012

Letters

to the

Editor... Con grat ula of P athw tions o n th a lot o y e la f wo s – cle a r rly a unch k ha dev elop n aw s go me ne i ful and nto it sh nt and the pub ows esti lica . It ng, tion wa inf at a , ll pa ormativ s intere an tron in s izi d uch liter ng (a b not pas a i g s on ture plus !) P my to a leas con ll in e grat vol all e ulat ver y ved an ions d suc –D I w cess ish ebo you rah (Ed Glov in the itor, f u e t r Jo ure. Nur sing urnal o f Co , U. mm K.) unit y

of pies y co t m d nd i eive ay a d it! I rec o t ys e wa a h t w h h rt nally Pat ll wo essio f e o w r op was ly l—s r tain utifu a ns! e B s ce a tatio h c t I e p . x done my e rd to ded e e orwa f c ng g ex n i achi look d re n a I am ng ibuti distr le! k peop ddic key a Re n Than i t r a k you –M so m for Pa uch thwa ys. T maga h e zine i s won The a der fu r ticle l. s are s inform o ative and t maga he zine i s bea prese u t ifully nted. – Fra n Sca to We would

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Patient Perspectives

Living the New Normal By Erin Pennell

itting around with some friends one January evening, I remember asking myself “What is wrong with my arms?” They felt heavy and were aching a lot. I wondered what was wrong as I hadn’t done anything different that day to account for the hurt I was feeling. There were no bruises or cuts, no obvious swelling and it was affecting both of my arms. The symptoms continued. A few weeks later I was at one of many appointments at the Cancer Centre for treatment of my second bout of breast cancer in less than a year. I met Martina Reddick, a friend from my home town who also just happened to be the lymphedema nurse! In the course of our conversation, I told her my symptoms. She told me it sounded like I had lymphedema. An assessment confirmed the diagnosis. I was stunned, even though it all made sense. Yes I had been “informed” about (given information) about lymphedema each time, but with the shock of the diagnoses, the wealth of information given and the decisions to be made, I guess it just didn’t get stored in my “chemo brain”! On top of that I am a nurse! I should have known! But at this point in my life I was primarily a young woman battling breast cancer and all that goes with it (numerous appointments, tests, biopsies, surgeries, chemo, radiation etc.) I wasn’t

“

I am living my life and doing my best to enjoy life as much as I can—living the new normal.

learned to do things differently. I’ve learned that I can’t do some things the way I used to, that I need to pace myself, take breaks and let others help—even when I really want to do it myself. I’ve learned to let go of some things, realizing that it won’t be the end of the world if there’s some dust on the furniture. I’m still trying to adjust to the sleeves and gloves. Finding what works for me is a work in progress—custom garments are on the way any day now. I cook, do some cleaning, occasionally iron a few things, spend time in my “Garden of Erin” created

Erin Pennell is a survivor of bilateral breast cancer (both in 2007). Like many breast cancer survivors, she lives with the after effects like lymphedema, fatigue, and fear of recurrence. Being a member of a support group helps her deal with these issues. Amazing family, friends, and medical support have made the journey easier for her. Erin is a nurse currently working in cancer care, where she hopes her personal experience may bring another aspect to those living and dealing with cancer.

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“

a nurse, I was a woman, I was a patient, I was (and thankfully, still am) a survivor! In the four years since these symptoms first presented, my lymphedema has progressed from mild to moderate. Swelling is now obvious. The heaviness and aching come and go. Adjustments have been necessary. My husband willingly does many chores that were traditionally mine. I don’t miss vacuuming too much though! I’ve

by my husband, occasionally hang clothes on the line (love it), work and of course, play! I accept every opportunity to learn as much as I can about living with breast cancer and with lymphedema. I participate in support groups for both. I read and ask questions and avail myself of the wealth of knowledge and services of our fabulous lymphedema nurses and certified lymphedema therapist. We are so fortunate to have them here. Whenever possible, I attend workshops and conferences that address these issues. “Knowledge is power.”

As a nurse, helping and caring is part of who I am. I am blessed that I can help a “sister” understand what is happening to her—not only from personal experience but also from a medical perspective. It is always so rewarding to see the look in someone’s eyes that tells you they grasp what you are telling them, and mostly to give them hope that life can go on. After all, “what are we in this world for if not to make it easier for each other.” While there is no cure for lymphedema, it is a condition that can be managed. I must do my part in trying to maintain “lymph health” and prevent flare-ups or worsening. As with the breast cancer journey, I have to do what works best for me. This is an ongoing process. In the meantime, I am living my life and doing my best to enjoy life as much as I can— living the new normal. LP Summer 2012

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Ask the Expert

Summer Living with Lymphedema By Janice Yurick

I am planning a summer trip overseas. As I have lymphedema in my arm, do you have any travel tips for me?

Well controlled lymphedema relies on routine maintenance. This likely includes wearing a well fitting compression garment, skin care, and practicing lymphedema risk reduction strategies. Other parts of routine maintenance may include: self massage, night time compression, and regular exercise. You will need to continue this maintenance regime while you travel. Additionally, there are a few extra things to

consider when traveling and flying. Many people experience some degree of limb swelling from air travel due to the reduced air pressure within the cabin of the plane. When you have lymphedema it is even more important to use compression to prevent an increase in your swelling. Be sure to wear your compression garments before, during and after the flight for several hours. While on the plane, try to spend time with your arm and hand elevated by propping your arm up on a pillow or two.

Additionally, you can encourage lymphovenous circulation with some simple exercise. For example—open and close your hand 10 times, turn your wrist in a circle five times each direction, bend and straighten your elbow 10 times. Repeat these exercises every hour. Along with air travel comes managing one’s luggage. While paced exercise may indeed help lymphedema, overuse injuries and strains cause an inflammatory response which results in an increase in fluid load. Try to avoid carrying a heavy bag on the side of your lymphedema. Luggage with wheels or backpacks with good waist supports are your best choices. Lymphedema patients must always use risk reduction strategies to minimize their risk of infection. Your skin is the best defense against infection-causing germs entering your body. Keeping your skin clean, well-moistured and intact will go a long way to minimizing your risk of developing an infection. Sometimes accessing healthcare in a foreign country is difficult. If you have had infection(s) in the past in your lymphedematous limb, you may want to talk to your doctor about taking an antibiotic prescription with you to use on your trip should an infection occur. Finally, a fun tip. Summer clothing may reveal more of your compression garments than usual. Compression garments are now available in a wide range of fabric colors and patterns. Ask your vendor about your many options.

Janice Yurick PT, works at the Cross Cancer Institute in Edmonton, Alberta as the Senior Physiotherapist and Coordinator, Department of Rehabilitation Medicine. She is also an active member of the CLF Advisory Board, Pathways Editorial Board and CLF Education Working Group.

Summer 2012

I wear a thigh-high stocking for leg lymphedema. Do you have any suggestions for how to manage in the summer heat?

Compression stockings can be hot at the best of times let alone during the hot summer months. You may not tolerate wearing a thigh-high stocking all summer long. Depending where the most problematic area is in your leg, you may be able to get away with wearing compression over a smaller area. For example, if your swelling is worse in the bottom part of the leg perhaps a knee high stocking would suffice; or if it is worse at the top of the leg, try lycra cycling shorts. Depending on how quickly your swelling accumulates once you remove your compression stocking, you may manage with no garment during the day if you use some form of compression at night such as multi-layered bandaging or a night time compression system. When outdoors in the hot weather, try misting your stocking with water to help to keep you cooler. Take steps to protect your skin with sunscreen or light clothing. Insect bites can cause inflammation which may increase your swelling or lead to an infection—use insect repellent when appropriate. An excellent place to be active in the summer and avoid overheating is the water. Water exerts pressure in the same way that your stocking does. In fact, aquatherapy has been shown to benefit lymphedema patients. You do not need to be a swimmer, simply walk in different ways—forward, backward and sideways. Lymphedema is a chronic condition— it is worth investing time to find the best way to manage your lymphedema so you can fully enjoy the summer. LP Ly m p h e d e m a p a t h w a y s . c a

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Clinical Perspectives

Prescribing Compression Garments for

Lymphostatic and Venous Edemas By Angela Vollmer

ymphostatic and venous edemas of the extremities are progressive conditions. Untreated, there is proliferation of connective tissue, fibrosis and sclerosis, making it important to commence conservative longterm treatment at an early stage. Once the edema is reduced with an intensive period of manual lymphatic drainage and bandaging, the patient is ready to be fitted with compression garments and to continue with skin care to avoid infection, and specific exercises. The prescription of medical compression requires a working relationship between the patient, physician, lymphedema therapist and garment fitter. Compression garments increase interstitial tissue pressure thus reducing new influx of fluid into the interstitial space. They also help stimulate lymphatic vessel s through enhancement of muscle pump action. A compression stocking is made-to-measure for the patient after an intensive decongestion period of four to six weeks. Use of the correct compression stockings for lymphedema is an essential prerequisite for adequate results in long-term therapy. The choice of compression class, stocking material, application of a dressing (where required) and possible combinations (such as wearing two compression stockings on top of one another) requires a great deal of experience on the part of lymphedema therapist and the attending physician. In general, the required compressive force and type of stocking depend on the type,

do not chafe or constrict the vessels and are highly air permeable. The stockings can be manufactured to exactly the specified dimensions. The more attractive thin, seamless, circular-knit stockings very often constitute a compromise when treating lymphedema but may be less effective.

severity and location of the lymphatic edema, as well as on the age of the patient. Such secondary disorders as radiogenic damage or rheumatic disorders must also be taken into account when prescribing treatment. The thicker, custom-made flat-knitted seamed stockings are ideal for dressing massive lymphatic edemas. These stockings

Angela Vollmer has a Masters of Orthopaedic technology in Germany and has over 20 years experience working in the lymphedema clinics of Dr. FĂśldi and Dr. Asdonk, providing approximately 2,500 custom made compression garments per year. Ms Vollmer teaches seminars to garmentfitters and orthopaedic technicians in Switzerland, Italy, France and Canada focusing on measuring technology and compressions garments for all types of lymphedema.

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Primary lymphedema In primary lymphedema there is impaired lymph flow an accumulation of proteinrich liquid in the interstitial fluid as a result of congenital dysplasia of the lymphatic system. In general, these patients require a higher degree of compression. In stage I primary lymphedema, the extremity concerned can be treated with a stocking of compression class II (see editorâ&#x20AC;&#x2122;s note, page 19*), using either seamless grades or large-mesh seamed stockings. Compression class III in the form of a seamless or preferably largemesh seamed stocking is used for stage II. A high compressive force must be applied in the case of stage III (lymphostatic elephantiasis) with extensive tissue deformities and skin changes. Here compression class IV or possibly even two stockings are required in order to obtain the necessary compressive force. An additional knee-high compression stocking may be needed in order to achieve the required compressive force if the edema has a strong distal tendency. A toe cap is usually also fitted to prevent edema in the toes. The application of two stockings does not mean that the compressive force is doubled: combining a compression Summer 2012

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stocking of class III with compression hosiery of class III yields pressure values corresponding roughly to class IV but not the equivalent of class VI. Secondary lymphedema of the arm The most commonly found form of secondary lymphedema is in the arm following surgery for breast cancer. The edema is aggravated by the post-operative radiotherapy treatment to the regional lymphatic nodes which is normally required after such surgery. Treatment with an arm sleeve follows the same principles as in the case of primary lymphedema. The compression must meet the specific requirements of the patientâ&#x20AC;&#x2122;s lymphedema location, stage and severity and may require one of various possible combinations of components (e.g. supporting arm sleeve with or without shoulder cap; gauntletâ&#x20AC;&#x201D;without fingers, or open glove with fingers). The garments should always be measured and produced to the size

present after maximum decongestion, after the initial intensive phase of lymphedema treatment. Compression class II is normally used, apart from a few exceptions (such as radiogenic damage to the nerves, restricted movement due to secondary disorders, older or very thin patients) where class I may be better tolerated. Phleboid edemas The venous and lymphatic circulation are closely interrelated. For example, venous decompensation increases the lymphatic water and protein load and therefore increases the burden on the lymphatic system. The body compensates for this additional burden by exploiting lymphatic vessel functional reserves, but the prime therapeutic objective is to enhance the venous circulation in order to avoid manifest damage to the lymphatic system. Depending on the degree of the edema, the first step in

therapy may be to apply compression bandages or to go through a period of combined physical decongestion therapy followed by the application of compression hosiery. Standard, circular knit stockings of class I or II may be adequate in mild cases. continued on page 18

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Compression garments increase interstitial tissue pressure thus reducing new influx of fluid into the interstitial space.

THE VITALITY OF THE SEA

Phlebolymphatic edema This refers to an edema of the extremities with lymphatic vessel damage secondary to longstanding chronic venous insufficiency (CVI). The venous insufficiency can be due to thrombosis (post-thrombotic syndrome), pronounced varicose vein insufficiency, or malformed valves or veins. The lymph vessels are ultimately damaged after years of trying to compensate for venous edema and the increased lymphatic water and protein load. Lymphedema appears when the functional reserve of the lymphatic system is exhausted. Patients with phlebolymphatic edema must have consistent, usually life-long follow-up and decongestive therapy for their lymphostasis. This includes the

use of a compression stocking usually of class II, following intensive reduction of the lymphatic edema as detailed above. Made-to-measure, flat-knit stockings are usually required for treating venous edemas of the extremities if lymphatic damage also exists. Lipedema syndrome Lipedema is a chronically progressive disorder with symmetrically disturbed distribution of fatty tissue, mostly on the thighs and hips, combined with tenderness, easy bruising and an orthostatic tendency to foot edema. It is almost exclusively seen in women. Lipolymphedema is a combination of disturbed distribution of fatty tissue and secondary damage to the lymphatic system. Lymphatic drainage is normally not required for a pure stage I lipedema, i.e. where there is no edema or other signs of lymphostasis. Consistent compression therapy with medical compression hosiery of class II is sufficient here. The volume

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Summer 2012

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can be reduced in such patients, provided that the compression stockings are worn regularly. Compression bandages are recommended after manual lymphatic drainage in order to reduce the pain. The compressive forces required are often not tolerated without preparatory decongestive treatment. For advanced lipolymphedema, strong, seamed compression stockings of class II or III should only be prescribed after several weeks of intensive decongestive treatment. Such treatment starts with bandaging and continues until there is no further pain. The duration of the treatment depends on the severity of the disorder. Additional knee-high compression stockings (class II or III) may have to be prescribed for localized distal lymphedema. Although a reduction in volume is often not possible in the case of severe stage III lipolymphedema in older patients, it is nevertheless advisable to prescribe compression hosiery. They do not chafe and may allow the patient to walk more easily, thus adding the therapeutic effect of exercise on the peripheral lymphedema. Some practical tips on compression garments Compression garments should ideally be made-to-measure when treating lymphatic edemas. The limb proportions can vary considerably from one person to the next, due to the edema and secondary tissue changes. The measurement procedure is facilitated by use of preprinted forms. There are no binding rules as to how

exactly measurements should be taken. In view of the numerous individual differences, the therapist’s experience therefore plays a decisive part. However, the extremity must always be measured after maximum prior reduction of the edema via intensive decongestive therapy, and ideally, first thing in the morning. Those with edema in the toes are fitted with a made-to-measure compressive toe caps with toe compression of class I or II, depending on the severity of the edema . Secondary leg and genital edemas (e.g. after carcinoma of the prostate) may be treated with compression half-tights. The band on the leg without a stocking must never constrict the vessels, otherwise an edema could be artificially created. Trouser braces with shoulder pads may be useful, as they prevent the stocking from slipping. Whichever method is used, the stocking must not be allowed to slip and crease in the back of the knee as this may lead to recurrence or worsening of the edema. It may be very difficult or even impossible for patients to pull up a compression

stocking if they have a co-morbidity or disability, such as coexisting arthritis. A two-part stocking may be much easier to pull on; for example: a compression panty followed by a compression stocking which is secured to the panty. Finding the right compression garment for a particular patient requires understanding of the pathology. In challenging cases the physician may wish to consult a lymphedema therapist who will be able to advise on the right prescription. LP References 1. Lymphoedema Framework. Best practice for the management of lymphoedema: International Consensus. London: MEP Ltd; 2006. 2. Weissleder H, Schuchhardt C. Lymphedema Diagnosis and Therapy. 4th ed. Essen, Germany: Viavital; 2008. Editor’s Note: *Most custom compression garments for lymphedema are made in Germany or in the USA. German standards are: Class I, 18 31mmHg; Class 2, 2332mmHg; Class 3, 34-46mmHg and Class IV, >49mmHg. There are no national standards for compression garments in the USA. The compression classification used most widely there is: Class 1 20-30mmHg; Class 2 30-40mmHg; Class 3 40-50mmHg and Class 4 50-60mmHg. (ref: Lymphedema Framework, 2006).

You Are Not Alone You have access to information, resources, contacts and support from people who know what you’re going through from their own personal experience. You have the following organizations on your side. Alberta: Alberta Lymphedema Association

www.albertalymphedema.com

British Columbia: BC Lymphedema Association

www.bclymph.org

Manitoba: Lymphedema Association of Manitoba

www.lymphmanitoba.ca

Ontario: Lymphedema Association of Ontario

www.lymphontario.ca

Quebec: Lymphedema Association of Quebec

www.infolympho.ca

Saskatchewan: Lymphedema Association of Saskatchewan

www.sasklymph.ca

Summer 2012

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Clinical Perspectives

Lymphedema Never Sleeps By John Mulligan

uring the initial, intensive phase of therapy lymphedema is treated both during the day and night. Why then would we abandon the nighttime management of lymphedema afterwards? We spend one-third of our lives in bed; lymphedema continues to occur while we sleep, and it still requires management. Therefore many patients may benefit from night compression. In the book 100 Questions & Answers About Lymphedema the authors state, “The optimal recommendation is to apply compression bandages to the limb nightly… bandaging is the gold standard for treating and maintaining lymphedema.”1 According to the Consensus Document Photo: JoViPak Corp

Photo: Peninsula Medical Inc.

Reid Sleeve Classic Leg of the International Lymphoedema Framework, there are two types of lymphedema patients for whom nighttime bandaging is appropriate; 1. Patients who experience “creeping refill” when wearing only daytime garments. 2. Patients with localized tissue thickening, also known as induration or fibrosis.2 Mastering the art and science of lymphedema bandaging can be difficult

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John Mulligan RMT CLT LANA is a registered massage therapist and Certified Lymphedema Therapist certified by the Lymphology Association of North America. In addition to this private practice in St. Catherines, Ontario John has also taught manual lymph drainage, advanced bandaging and done numerous presentations on the subject of lymphedema. He is a member of the Education Working Group of the Canadian Lymphedema Framework. Disclosure: John is the co-founder and Clinical Specialist at Lymphedema Depot Ltd, a Canadian distributor of Solaris products.

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and time consuming for the patient, and compression bandaging that is applied improperly may do more harm than good.3 This brings us to the alternative of nighttime applications that provide a function similar to lymphedema bandaging but are much more user-friendly. Nighttime garments fall into two classes: the foam liner with straps and quilted fabric with foam fill garments. The foam liner with straps type has a foam liner, which is encased in fabric. This forms a tube into which the limb isinserted. The patient must then apply compression by fastening a series of straps to preset markings. The foam liner disperses the pressure of the straps and addresses the fibrosis. Depending on the brand of product the calibration of compression can be done by the sales representative for the company,

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Summer 2012

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by a fitter or therapist, or by the patient. provide compression. One brand, These devices are available to fit arms JoViPak, requires compression to be or legs, and are easier and less timeadded by use of a compressive over-sleeve consuming to apply than bandaging. or bandaging over the top of the garment. They are designed to reduce fibrosis and Another brand, the Solaris Tribute, is contain swelling. Examples of this type custom made to deliver a specific level of device currently on the market are of compression that is therapeutic for a the Reid Sleeve Classic and sleeping patient. These products the CircAid Measure-Up. are easy to don, comfortably The other type of contain swelling and Nighttime nighttime garment that are also very good at garments fall into has been developed softening fibrosis. They two classes: the is the quilted fabric can be made to fit any foam liner with straps with foam fill type. part of the body where and foam filled These products are chronic swelling occurs. sewn from high Another product type quilt fabric. performance fabrics and is the short stretch binder. quilted into foam-filled chanThese binders have little or no nels. The channeling is meant to foam component and, while they are guide the flow of the fluid away from primarily for daytime wear, can also be saturated areas. The fill is made up of worn at night by appropriately adjusting multi-density foam pieces which massage the compression. These are recomthe skin and stimulate the lymphatics. This mended for aggressive edemas that type of garment does not employ straps to must be contained. Examples are

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Summer 2012

FarrowWrap, CircAid JuxtaFit and Solaris ReadyWrap. As a therapist, I have observed over the years that the addition of a nighttime therapeutic garment makes lymphedema easier to manage during the day and improves the quality of life of the lymphedema patient. It is a practice I recommend to anyone who is managing lymphedema. LP References 1. Thiadens, SRJ, Stewart, PJ, Stout NL. 100 Questions and Answers About Lymphedema. London: Jones and Bartlett; 2010.87-88 2. International Lymphoedema Framework. International Consensus Document: Best Practice for Management of Lymphoedema. London: MEP Ltd.; 2006.21 3. Consensus Document of the International Society of Lymphology. The Diagnosis and Treatment of Peripheral Lymphedema. http://www.u.arizona. edu/~witte/2003consensus.pdf. 5

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