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Canada’s Lymphedema Magazine

Pathways

SPRING 2015

Empowering patients and professionals

Surgical treatment options An interview with Dr. Miles Johnston

Pneumatic compression Kinesio taping

W H AT’S INSIDE... Educational events I Mobile app I Personal story I Affiliate profile I Ask the Expert B496_CLF_Pathways_Spring 2015.indd 1

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Editor’s Message

An unsung lymphedema hero

T

he best part of my role is the people I meet who are dedicated to advancing lymphedema research and care. I consider them the unsung heroes, as many of them have been plodding along for years with minimal recognition in a field not receiving much attention. One of my lymphedema heroes is Dr. Miles Johnston, whom I have the pleasure of knowing not only as a great researcher, writer and speaker, but also as a great supporter of lymphedema advocacy work. He has been one of the most anticipated speakers at lymphedema conferences with the audience always eager to hear more about his fascinating work. Selfishly, I am sorry to see him retire, although I certainly wish him well. One of my fondest memories of Dr. Johnston is when I interviewed him at his Sunnybrook laboratory for a magazine story, many years ago. My assumption was that the interview would take place in his office,

lymphedema seem to be the “buzz” these days, we highlight two other treatment protocols in this issue that can have an important place in lymphedema management. I thank Karen Ashforth for giving us a balanced perspective on the benefits of sequential pneumatic pumps and to Ruth Coopee who helps explain the mystery of Kinesio taping. The American Lymphedema Framework Project has come up with an innovative application for finding therapists on your mobile device. We encourage all Canadian therapists who meet the eligibility qualifications to add their contact information, making it easier for patients to find appropriate resources. Community resources are growing in Canada. When I started in the lymphedema community, there were only two lymphedema associations—Ontario and Quebec. I am very excited that Newfoundland and Labrador

The best part of my role is the

advancing lymphedema research and care.

but to my surprise, I was given scrubs, mask and gloves before being whisked away to the operating room. I was going to observe in real time the research that his laboratory was working on. I was invited to sit beside Dr. Dalia Tobbia, (who was on a research fellowship), as she performed lymph node transplantation on a sheep with painstaking microsurgical techniques. I certainly had stories to share at the family dinner table that evening! It is fitting that this issue includes both a tribute to Dr. Johnston for his great contribution to the lymphedema world and an article on surgical treatments for lymphedema by Dr. Tobbia. Though surgical treatments for Spring 2015

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people I meet who are dedicated to

is now the seventh patient association in Canada. The association leaders connect with each other at events and through quarterly cross-Canada teleconferences hosted by the Canadian Lymphedema Framework. Our unified voice is getting stronger and patients have more support than ever in getting help from fellow patients and being directed to the proper local resources. Nancy Tvarok is another lymphedema patient who has taken the time to share her story. I laughed when I read her perspective on dealing with lymphedema. It is comical but also

One of my lymphedema heroes is Dr. Miles Johnston, whom I have the pleasure of knowing not only as a great researcher, writer and speaker, but also as a great supporter of lymphedema advocacy work.

poignant and many patients reading her story will no doubt relate to her various stages of denial, anger, pity and acceptance. It’s a journey that many make before learning to accept and manage their chronic condition. Networking and learning from each other is an important aspect of managing lymphedema. It helps patients feel less isolated, reminds them that they are not alone and inspires them to take charge. We hope this magazine can also play a role in your quest to learn as much as you can about lymphedema. I know as an Editor, and someone living with lymphedema, I learn something new with each issue. I hope you do as well. LP

Anna Kennedy

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Contents

Surgical Treatment Options for Lymphedema Spring 2015

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Volume 4 Issue 2

Publisher Pathways is published four times per year by BCS Communications Ltd. on behalf of the Canadian Lymphedema Framework (CLF) and its provincial affiliates. Editorial Board Pamela Hodgson, PT David Keast MD FCFP Roanne Thomas PhD Anna Towers MD FCFP Lucette Wesley CIM Janice Yurick PT Editor Anna Kennedy Editorial Intern Nicole Boulet Advertising and Submissions We welcome your ideas, contributions, letters and ad copy. While all material is subject to Editorial Board approval, inclusion does not constitute an endorsement or 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 4800 Dundas Street West, Suite 204 Toronto, Ontario M9A 1B1 Telephone: 647-693-1083 Email: canadalymph@live.ca www.canadalymph.ca Stock photos in this issue: CanStockPhoto Other photos are courtesy of K. Ashforth, R. Coopee, ALFP

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

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Current trends in the surgical treatment for lymphedema and the realistic outcomes that can be expected from each procedure.

............................................. Forty Years of Devoted Research An interview with Dr. Miles Johnston, who retires from a long, productive research career in the field of lymphatic circulation.

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5

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Ask the Expert Why doctors don’t know Physicians’ education includes little emphasis regarding diagnosis or management of lymphedema.

.................................................. Pneumatic Compression Pumps Pneumatic compression is experiencing a resurgence in popularity and is an effective tool for achieving decongestion in both the acute and maintenance phases of lymphedema treatment.

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................................................. Kinesio Taping and Lymphedema The phenomenon of the mysterious black tape A complementary treatment method that can encourage the movement of fluid beneath the skin.

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................................................. Personal Story Experiencing the various emotional stages of denial, anger, pity and acceptance.

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................................................................... Look4LE – Mobile App Finds Lymphedema Therapists Using your smartphone as part of your lymphedema care New technology aims to make finding lymphedema therapists more accessible.

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Treatment Options

Surgical treatment options for lymphedema By Dalia Tobbia

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ymphedema represents a progressive and debilitating condition associated with dysfunction of the lymphatic system. Regardless of whether it is primary or secondary lymphedema, its onset is often a distressing experience and reported as having a negative impact on the quality of life. The epidemiology of cancer-related lymphedema is changing. Increased attention is being focused on the modification of anti-cancer therapies in an effort to minimize lymphatic compromise and reduce lymphedema incidence in early-stage cancers. As a consequence, patients with high-risk cancer (e.g. large tumors and several positive lymph nodes) constitute an increasing proportion of lymphedema patients because of their need to receive more comprehensive treatments. Conservative measures to treat lymphedema Nonsurgical treatment options for lymphedema include an initial course

of complex decongestive therapy (CDT) administered by a lymphedema physical therapist. This is achieved by the application of external compression including manual lymph drainage, compression bandaging or garments, therapeutic exercises, intermittent or sequential pneumatic devices and skin care. The objective of these approaches is to ‘milk’ the interstitial fluid and lymph through the lymphatic system to decongest the affected limb. However, the maintenance therapy and the ongoing use of compression garments required afterward must be continued indefinitely in order to remain effective. In some cases and despite optimum conservative measures there is worsening of the lymphedema after a period of stability maintained by such measures. Therefore the development of additional methods to treat lymphedema is essential. Surgical treatments of lymphedema Surgical procedures to treat lymphedema

Dr. Dalia Tobbia MB, BA, Bch, BAO, FRCSI is a Plastic Surgeon from Ireland and a specialist in the field of reconstructive microsurgery. Her primary clinical and research interests are focused on the development of surgical treatments for the management of lymphedema including vascularized lymph node transfer. She is currently doing a fellowship in Taiwan, working closely with Professor Cheng.

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have existed for over a century. More recently and due to advancements in medical technologies, sophisticated microsurgical procedures have been introduced. In themselves they are neither new nor experimental and have been applied broadly for more than 20 years in Europe. They should however be reserved for patients who have failed intensive combined medical therapy, or in cases where the initial positive effects of conservative measures are no longer capable of maintenance and there is progressive worsening of the lymphedema. Better results are generally obtained if operative intervention is applied in earlier stages of the disease. Imaging technologies have made it possible to visualize lymphatic vessels in real time and perform accurate mapping of their course, thereby making it possible to routinely perform ever more complex procedures. Debulking procedures The Charles procedure was the first reported debulking procedure, described in 1912. This operation involves extensive removal of skin and soft tissue down to the muscles, followed by skin grafting over the excised area.

Photo: CanStockPhoto

This article aims to present an overview of current trends in the treatment for lymphedema and increase the reader’s awareness of the realistic outcomes that can be expected from each procedure.

Sir Richard Henry Havelock Charles

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Lymphatic-venous anastomosis procedures are mostly used

for secondary lymphedema, but

can be also applied to congenital

lymphedema where functional

lymphatic vessels are present.

Since then variations of this procedure have been reported with better results in terms of function and incidence of infection. However, these remain very disfiguring. They are performed less frequently today and are only offered for extreme cases of lymphedema elephantiasis, where massive skin thickening, swelling and repeated life-threatening infections may justify such radical surgery. Suction assisted lipectomy This intervention can address the solid phase of the lymphedema disease process by removing large volumes of excess fatty tissue deposits that can be aspirated from the lymphedema-affected limb. This is done after it is clearly demonstrated with radiologic imaging that the excess lymph fluid has been maximally reduced with conventional decongestive therapies and the cause for persistent increase in the volume of the affected limb is the excess fibrous-fatty tissue as compared to the normal limb. When performed correctly this technique has been shown to reduce large amounts of volume excess effectively in a limited number of patients with mild to moderate lymphedema. More significantly, the incidence of dangerous cellulitis can be reduced by up to 75% as a result. Despite these improvements it is important to emphasize that this operation does not address the underlying pathophysiological case of lymphedema nor does it restore any lymphatic continuity. Therefore a successful outcome cannot be achieved without commitment to a life-long integrated regimen of complex decongestive therapy and custom fitted compression garments to 6 Ly m p h e d e m a p a t h w a y s . c a

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prevent renewed buildup of excess lymphatic fluid. This technique differs significantly from conventional cosmetic liposuction and should not be attempted by surgeons not trained in the procedure. Disruption of lymphatics and increased swelling due to over aggressive or incorrect suctioning are risks if performed by an inexperienced surgeon. Also the compression garments and lymphedema therapist decongestive protocol differ significantly than in cosmetic liposuction and are crucial to the procedure’s success. Lymphatic-venous anastomosis This procedure involves connecting lymphatic vessels to small adjacent veins allowing excess lymph fluid to bypass areas of obstructed lymph flow and drain directly into the venous system. Initially described in the 1970s, early attempts were met with limited success due to the formation of clots at the anastomosis site between the veins and lymph vessels. However with refinements in the method, introduction of better quality microscopes and ever-smaller sutures, in addition to “super microsurgical techniques�, lymphaticvenous anastomosis can be performed with significant improvement in limb girth, ranging from 42% to 83% in selected patients, as well as significant reduction in the frequency of infections. Even with the aforementioned advancements, this surgery remains technically challenging requiring a high level of expertise because lymphatic vessels are tiny and thin walled, ranging from 0.1 to 0.6 mm in diameter, making them tricky to handle. Also the identification of functional lymphatic vessels within the scarred lymphedema-affected extremity and a competent venous system are crucial points to the success of this operation. Better reduction of lymphedema is more likely to result when more numbers of lymphatic-venous anastomosis are performed. Most literature seems to recommend the continued use of complex decongestive therapy and compression garments following this procedure, but to a lesser extent, and depending on response to therapy some patients may be able to discontinue conservative treatments.

However there is a lack of consensus in this regard. Lymphatic-venous anastomosis procedures are mostly used for secondary lymphedema, but can be also applied to congenital lymphedema where functional lymphatic vessels are present. Despite being successful in the short term, many studies have shown that these vessels can eventually become occluded over time, reversing the initial positive effects. Lymphatic-to-lymphatic bypass First described in 1986 by Baumeister, the method here relies on harvesting healthy donor lymph vessels, usually taken from the inner thigh, and transferring them to bridge the scarred or irradiated region in the lymphedema-affected limb. They are then sutured to patent lymph channels on either Ruediger side of the scarred area, Baumeister thus allowing lymph to flow more easily through areas previously obstructed due to lymphatic destruction and scarring. Improvement in the lymphedema and effective drainage of lymphatic fluid is clearly demonstrated early after surgery. Even though most patients experience some alleviation of their symptoms, this appears to be inconsistent, making it difficult to predict the outcome for each patient. A successful result is more likely in the arms than legs and directly proportional to the number of vessels transferred. A similar high level of technical expertise is required for the handling of lymphatic vessels. Despite careful selection and collection of lymphatic vessels to minimize risk of complications at the donor site, there is a small but theoretical risk of inducing lymphedema in a previously healthy leg. Vascularized lymph node transfer First described over 20 years ago as a promising alternative for the management of lymphedema, it involves microsurgical transplantation of soft tissue containing lymph nodes to restore lymphatic drainage. These can be harvested from donor sites such as the groin, chest wall, or neck along Spring 2015

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Diagram: www.robfergusonmd.com

Vascularized lymph node transfer with their nourishing blood vessels and transferred to the lymphedema-affected arm or leg, where these vessels are connected to local vessels to reestablish blood circulation that is crucial to the survival of the transferred nodes. There are several possible recipient sites for lymph nodes in the affected limb. For example, in the upper extremity, the axilla can be the most arduous recipient site for nodes because of scarring and irradiation changes to the tissues. The elbow and wrist on the other hand tend to be healthier recipient sites. The same is true

for the lower limb where the groin tends to be the most scarred region. Therefore the best symptomatic improvement is seen when the nodes are transplanted to the more dependent sites where fluid tends to pool, such as the wrist or ankle. However these regions tend to yield the least pleasing cosmetic results because the transplanted lymph node flap is more obvious even though it appears to be more effective at clearing lymph fluid. The cosmesis here can be improved over time with debulking procedures. Despite this many surgeons

avoid transplanting nodes to these sites and opt for more inconspicuous locations. These transferred lymph nodes appear to act like suction pumps facilitating lymph clearance and restoring local immune response, thereby reducing the likelihood of infections. Clinically, the lymphedematous limb becomes softer and less heavy; improved range of movement and skin wrinkling starting to appear in some cases within one week after surgery. The reported mean reduction rate in lymphedema following this procedure is between 40-50%. This improvement appears to be sustainable over time because the transferred lymph nodes continue to work at shunting lymph from an expanding area of the surrounding tissues to the venous system. This intervention has been successfully used in both congenital as well as primary lymphedema. If it produces adequate outcome there is the hope that patients will no longer require conservative treatment measures, or at least to a much continued on page 8

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lesser degree. But there have not yet been any published studies with clear evidence in this regard. The main disadvantage of the lymph node transplant procedure is the potential risk for donor site lymphedema. However more accurate mapping of the lymph node drainage region before surgery helps to further reduce the chance of developing complications at the donor site. If simultaneous breast reconstruction is performed, the lymph nodes can be transferred together in a single operation. Summary There is not one gold standard procedure that can be used for all patients. The use of lymph node transfer, lymph-venous anastomosis, and suction assisted lipectomy together with appropriate conservative decongestive therapy may be combined into an integrated treatment system tailored to the individual needs of the patient in order to deliver a more successful treatment strategy. For example, some advocate the use of lymph-venous anastomosis as an initial step if functional lymphatic vessels

are identified on imaging. This is because it is a relatively easier procedure to perform and carries fewer risks. If this helps to alleviate the symptoms to an acceptable degree then no further intervention is required. However if this is not the case additional lymph node transfer can be performed at a later time to provide more optimal improvement of lymphedema symptoms. In cases where there is success in clearing away the lymph fluid from the limb by a reconstructive method, but there remains a discrepancy between the size of the affected limb as compared to the normal, then suction assisted lipectomy can be performed to remove the solid component of lymphedema. With this combination the aim is to render the lymphedema-affected extremity as normal as possible. This selective application of the appropriate method to treat the fluid or solid phases of lymphedema greatly improves overall outcomes. Despite this fact, it remains important to perform reconstructive procedures while the patients are still in the fluid phase of their condition, before the collection of excess solids occurs. A delay in treatment may allow

solids to accumulate and the condition to invariably worsen with time. While lymphedema continues to be a distressing consequence of cancer diagnosis and treatment, there has been over the past number of years increasing enthusiasm in the medical community to research this previously neglected field and discover reliable treatment options. This has led to the evolution of reproducible therapies that have the potential to change the long-term outlook for many suffering with this condition. Such surgical treatments are only offered in very few centers around the world at the current time, but there is every hope that it will become more widespread in the near future. LP

An expanded article and full references are available at www.lymphedemapathways.ca Editor’s Note: These specialized surgical procedures, are still evolving in various parts of Canada, and not readily available.

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Research News

Forty years of devoted research By John L. Semple

A

fter 40 years of the Brain Sciences Program at intelligent and devoted the Sunnybrook Research Institute. Rather than write a tribute type of research in the field of article on Miles I decided to ask him lymphatic circulation Dr. Miles Johnston is specific questions about his career—questions retiring. Dr. Johnston’s work that might give readers some insight into focused on the lymphatic circulation and its choices he had, decisions he made, as well role in the drainage of cerebrospinal fluid. as high points in his career of research in lymphatic physiological science. The following The first time I met Miles Johnston was are the questions I presented to Miles and in 1983. Everyone was crowding into his his answers: office in the Medical Science Building at the University of Toronto, having a look at one of What were your key influences (role the first Macintosh Apple desktop computers that anyone had seen. He was demonstrating models) in choosing this career? I can say without hesitation, that I never how he could plot his data on a graph just by had any ambition to be a professor. I feeding in the numbers. We were all amazed. stumbled into this career quite by chance. This was only two years after returning from I remember sitting outside the Sidney his post-doctoral training in England. Smith Building on St. George Miles Johnston started Street as I was now finished his career here in Toronto Dr. Jack Hay with my 4th year final where he received a B.Sc. was an especially exams at the University (1974) in Physiology/ important mentor for of Toronto and my next Pharmacology at the me...I have enjoyed move was unclear. University of Toronto One of my classmates and a Ph.D. in the his company and sage happened to pass by Division of Experimental advice enormously and told me that he had Pathology (Department over the years. applied to Graduate School of Pathology) at the same and in passing, gave me a institution in 1979. Following copy of the School of Graduate post-doctoral training at the Studies handbook. On leafing through this, Babraham Institute, Cambridge, England I came across the Department of Pathology. from 1979-1981, he returned to Canada to This seemed strange to me at the time as this take up a faculty position at the University of Toronto. Most recently, he retired as Professor was a clinical department and it was not clear how a non-MD would fit it. As I had nothing in the Department of Laboratory Medicine better to do, I walked over to the Medical and Pathobiology and as Senior Scientist in

John L. Semple MD, MSc, FRCSC, FACS is Surgeon in Chief at Women’s College Hospital, Chair in Surgical Research for the Canadian Breast Cancer Foundation and Professor, Dept. of Surgery at the University of Toronto.

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Sciences Building and took the elevator to the 6th floor. On attempting to find the graduate office I came across an elderly gentleman (as I would find out later he was 50 years old at that time!), and he was kind enough to talk to me about opportunities in Pathology for a MSc or PhD degree. This ‘gentleman’ was Dr. Henry Movat and he was one of the world authorities on the inflammatory response. One thing led to another and he accepted me into his lab as a graduate student. Graduate school was entirely different from anything I had experienced before. My supervisor Dr. Movat was an amazing man and others in the Department of Pathology, most notably Dr. Hay and Dr. Ranadive, were very helpful and supportive of my efforts. Dr. Jack Hay was an especially important mentor for me. He introduced me to the lymphatic system and I have enjoyed his company and sage advice enormously over the years. I owe him a great deal as he has had a significant impact on my life. In 1979, I moved to England to pursue post-doctoral studies at the Babraham Institute in Cambridge under the guidance of Dr. John Gordon. Our time in Cambridge was very enjoyable, in part due to the great academic atmosphere and in part due to our immersion in a new culture. Dr. Gordon’s support no doubt helped pave the way for my successful application to the Medical Research Council (MRC) for a Scholarship award. Ly m p h e d e m a p a t h w a y s . c a 9

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What type of support did you get to pursue this direction? I was very lucky to receive MRC funding to support my PhD training, post-doctoral studies in England and my earlier career (MRC Scholarship award, which paid me for five years at the Assistant Professor level). If I had not received the latter, my research career would have ended since the University of Toronto was not hiring new faculty in the early 1980s. After a five-year period when the Scholarship expired, the University of Toronto and Sunnybrook Hospital supported me until retirement. I should also note that I was very lucky to receive MRC/CIHR (Canadian Institutes of Health Research) grants, which funded my research for most of my career.

Productivity came in the form of intense study, a steady stream of enthusiastic graduate students, postdoctoral fellows and strong collaborations with other investigators.

Why did you pursue a career focusing on the physiology of lymphatics and lymph nodes? Undoubtedly, Dr. Jack Hay was the most important influence in my choice of lymphatics as a research topic. He introduced me to the lymphatic circulation as part of my inflammation studies as a graduate student. At that time, we were collecting lymph as a way to access chemical mediators from inflammatory sites. However, a research experiment in England during my postdoctoral studies cemented my interest in this area. Another student in Dr. Gordon’s lab (Dr. Bill Martin) was studying pharmacological issues related to vascular smooth muscle. He suspended rings of aortic tissue in an organ bath and quantified the contractile responses of the tissue segments. On one occasion he allowed me to set a ring of sheep intestinal lymphatic into his system and test whether it would respond to a thromboxane analogue. We had no expectation that anything would happen but remarkably, the lymphatic started 10 L y m p h e d e m a p a t h w a y s . c a

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contracting rhythmically and with great force. This was very exciting at that time and ultimately studies of lymphatic contractile activity would provide the foundation for my early academic career. Which individuals both local and international stand out as colleagues and collaborators? Apart from those already mentioned (Dr. Henry Movat and Dr. Jack Hay) there are several others who stand out as having made very important contributions to my work and career (refer to www.lymphedemapathways. ca for a full list). One of my most important collaborators was Dr. John Semple. John and I have been friends for many years and we have worked together to understand the factors that contribute to post-surgical lymphedema. Our projects have benefited enormously from this collaboration and I have learned much about the clinical complexities of this condition from John. What are the key discoveries in lymphatic research over your career that you think are important contributions to a better understanding of lymphatics? The most important advances in lymphatic research have come from molecular biological studies. We now know the agents that control the differentiation of venous endothelial cells into a lymphatic phenotype and how the new vessels grow and eventually separate from the veins to form the blind ending lymphatics. There is also exciting new data outlining the role of this system in cancer progression. These data may contain clues as to the development of strategies to inhibit the metastatic spread of cancer. Many excellent reviews are available which outline the impressive progress made in this area over the last decade or so. In addition to the aforementioned, significant progress has been made in understanding the physiology of the system. For example, it is now generally understood that the contractile properties of the vessels have a major role in lymph propulsion and that this activity can be modulated with a variety of chemical agents. We also have a better understanding of the role of this

system in the drainage of extracellular fluid from tissues and organs (cerebrospinal fluid removal from the brain for instance). Along these lines, several elegant studies demonstrated that interstitial fluid pressures become more negative in inflammation, a finding that has important implications for lymphatic function. Where do you think lymphatic research is going in the next five years? While I am generally optimistic about the future, there is room for improvement in the area of education. Lymphatics receive very little attention in university courses or indeed, in medical schools. Until this changes, we will not see the critical mass of investigators necessary for real progress in the development of new treatments for lymphatic disease. Nonetheless, there has been significant progress in the basic biology of the lymphatic system. The one area that has outperformed all others in this field relates to our understanding of the molecular regulators of lymphatic development and lymphangiogenesis. We all hope that this molecular foundation will provide new targets for therapeutic intervention in the various forms of lymphedema. However, if our experience in other areas of research is anything to go by, the application of this information to patient treatment will be difficult and slow. Stem cell therapies are all the rage in some disciplines but their application to lymphedema is difficult to predict at least in the short term. Primary lymphedema is especially problematic. However, I believe that the best results for secondary lymphedema will be in the area of prevention rather than treatment. Indeed, there is promising evidence that lymphatic filariasis may be completely eradicated by preventing the spread of the microfilaria to mosquito hosts with drugs. Along these lines, I suspect that it will be more beneficial to prevent the secondary lymphedema associated with cancer therapy than attempting to treat it after the edema has become entrenched. By identifying those individuals at greatest risk (genetics, physiological issues, pre-clinical edema studies, molecular markers etc.) and continued on page 12 Spring 2015

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treating them conservatively, we may be able to reduce the incidence of lymphedema significantly. In terms of basic science, I am certain that our molecular understanding of this system will continue to grow. However, our knowledge of the physiology of the system will progress more slowly unless we train a new generation of ‘classical’ physiologists

Q

(a group that can see extinction on the horizon). Lymphatic physiology is not a ‘sexy’ area of research and yet, there are many important issues that need to be addressed. From a personal perspective as a pathophysiologist, I would have been keen to address these questions if I were now starting my career:

oW hat are the mechanisms by which radiation depresses lymphatic function? Can we prevent radiation-induced lymphatic injury with drugs? o Why is the removal of the lymph node (as opposed to the injury of the lymphatic vessels) so important for lymphedema development? How does the lymph node excision affect interstitial fluid pressures in the drainage area of that node? o Can one predict the development of lymphedema by monitoring interstitial fluid pressures pre- and post-surgery? o Can pharmaceutical modulation of the contractile properties of the lymphatic vessels be used to enhance lymph flow if appropriate in certain diseases? For example, can one increase cerebrospinal fluid drainage by instilling lympho-active drugs into the nasal cavity? o Do we need to consider the role of the lymphatic system in the physiological adaptations that occur in microgravity conditions (space travel)?

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With the closing of the “Johnston lab” so ended an era of one of the most productive and well-funded basic science research labs dedicated to investigating the lymphatic circulation. Productivity came in the form of intense study, a steady stream of enthusiastic graduate students, postdoctoral fellows and strong collaborations with other investigators. During his career Miles had other many other pursuits outside the lab including fast cars, good wine and sailing. Miles now lives with his wife Carol in the countryside outside of Toronto and is enjoying his free time to pursue his many other interests. LP Editor’s Note: We encourage you to visit www. lymphedemapathways.ca for the expanded article that references and acknowledges many of Dr. Miles Johnston’s colleagues, collaborators, research fellows and laboratory staff throughout his career.

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Ask the Expert

Why doesn’t my doctor know about lymphedema? By Elliott Weiss

Q A

How common is lymphedema?

Worldwide, lymphedema is most commonly associated with filariasis. Lymphedema secondary to breast cancer is thought to affect up to 40% of women. Primary lymphedema can be seen in 1/10,000 people. Lymphedema can develop secondary to other malignancies, with chronic venous insufficiency, and/or following trauma. It is a misconception amongst physicians that lymphedema is a rare or unimportant condition. In fact it is very common but poorly recognized or acknowledged.

Q A

Why do physicians appear to know so little about lymphedema?

Traditionally, physicians’ knowledge of medical conditions focuses on diagnosis and treatment of diseases. In the case of lymphedema there are currently limited investigations available and treatment is generally non-pharmacological and non-surgical. So, for many physicians, lymphedema is viewed as a relatively untreatable condition with few medication or surgical solutions. Therefore little emphasis is given to physicians regarding the education,

diagnosis or management of lymphedema. The passage of knowledge about lymphedema from physician to student is very limited in scope and depth.

Q A

How do we improve physicians’ knowledge of lymphedema?

There are different schools of thought regarding changing physician behavior. One view is that improving the education of medical students will have a positive impact on their knowledge and practice in later years. Other approaches include improving continuing medical education for physicians once they are in practice. Strategies include targeting physicians who are expected to see patients with lymphedema.

Q A

What about the role of research?

The Canadian Institutes of Health Research (CIHR) promotes the “Knowledge-to-Action Cycle” as a guiding framework that outlines strategies to improve knowledge and physician behaviour. Lymphedema care in Canada could clearly benefit from this strategic approach, but implementation would require a Canada-wide academic commitment to improving care for all lymphedema patients. Research activities could include benchwork, epidemiological studies and clinical trials while exploring new treatments within traditional complimentary or alternative models. The challenge is getting the attention of provincial and federal government organizations, health authorities, hospitals, and physician-based organizations.

Elliott Weiss MD, FRCPC is a medical consultant in Physical Medicine and Rehabilitation in Vancouver, and Division Head, Physical Medicine and Rehabilitation, Providence Healthcare. He has been a medical advisor to the British Columbia Lymphedema Association since its inception.

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Q A

What strategies could impact change?

There is an urgent need to change physicians’ knowledge and practice through a multi-dimensional approach. Each of the following recommendations on its own is insufficient to have a major impact: 1 Improve medical student exposure to lymphatic disorders and lymphedema management. 2 Develop lymphedema clinics in major medical centres with participation from vascular surgery, oncology, dermatology, physical medicine and rehabilitation, as well as primary care. 3 Lymphedema management should occur through a multi-disciplinary approach. Improving and standardizing the work of garment fitters needs to be addressed. The need for psychological support is critical. 4 Develop publicly funded health care resources to support research and clinical service delivery models. 5 Initiate a “Knowledge to Action Cycle” for lymphedema with the support of CIHR. Over the past quarter century, there has been an awakening with regards to lymphedema care in Canada. With further energy and collaboration, we should all look forward to further improvements in the clinical management of this under recognized medical condition. LP

Editor’s Note: The Canadian Lymphedema Framework will be offering a physician-only session at the National Lymphedema Conference in Calgary, October 23-24, 2015.

Photo: CanStockPhoto

My lymphedema patients often complain that their family physician doesn’t seem to know much about lymphedema, or even if they recognize the condition, offer little in the way of helpful management suggestions. Patients get frustrated and sometimes doctor-shop or seek out the advice of other healthcare practitioners. They look for solutions on the Internet or just give up in frustration.

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Clinical Advances Heading

Using pneumatic compression in lymphedema treatment By Karen Ashforth

Pneumatic compression is experiencing a resurgence in popularity as a treatment for lymphedema, both as a means of accelerating the in-clinic treatment phase, as well as for home care.

Photo: Karen Ashforth

I

n the past, classically trained lymphedema therapists were cautious about adopting pneumatic compression as a modality. This is despite the fact that pneumatic compression has been shown to be equivalent in efficacy to professionally applied manual lymph drainage (MLD)1, offering better maintenance control than self-applied massage2, and an effective adjunctive modality when combined with other treatments3. In addition, for many years pneumatic compression appliances were available for extremities only, and did not provide treatment for torso edema. However, this limitation has long since been overcome due to development of specialized appliances that treat the torso as well as the extremities, along with multimodal treatment cycles that can vary the patterns of massage. Pneumatic compression has once again become an important treatment component for lymphedema. It is important to remember that although pneumatic compression can perform a similar decongestive function, it is not a substitute for hands-on massage. A machine, no matter how sophisticated, cannot replace the hands and eyes of a trained lymphedema therapist. Sometimes very specific manual techniques and drainage patterns are required; for example, in treating a patient with an irregularly shaped breast. However,

Calibrated gradient pump and torso – arm appliance. the automated and replicable action of pneumatic compression has the advantage of being more cost-effective than professional MLD, and more efficient than self-applied massage. Pneumatic compression decongests swollen arms, legs, and torso areas by applying massage and compression. A console supplies air at calibrated pressure to an appliance, which is worn around the treated body part. The appliance contains air chambers, which inflate and deflate in

Karen Ashforth MS, OTR, CHT, CLT-LANA has practiced occupational therapy for 34 years, specializing in treatment of lymphedema for 11 years. She is board certified in both hand therapy and lymphedema therapy and has presented and published lymphedema research internationally. She directs a hospital based outpatient lymphedema clinic in Santa Cruz, California.

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one or more specific patterns, creating a directional compressive movement that decongests edematous areas. Types of systems There are a wide variety of pneumatic compression systems, from basic three or four chamber units that are limited to treating arms or legs, to more complex combinations, which can treat extremities and trunk. Systems are classified by the ability to set the pressure across the entire appliance (sequential pump) or in individual sections on the appliance (calibrated gradient pump). The arms and legs are a major focus of lymphedema treatment. If edema is limited to these areas, an extremity-only appliance is usually sufficient and has the advantage of being lower-profile and easier to comply with than a torso or truncal appliance system. Spring 2015

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However, if the lymphatic system in the trunk is damaged, it needs treatment as well. Fluid drained from arms or legs can collect and congest at the end of the extremity, and add to edema that is already in the abdomen, genitals, shoulders, chest or back. In the last ten years more sophisticated devices and appliances have been developed to treat areas of the trunk and torso, with many options including the ability to vary amounts of compression and pre-treat proximal areas. Applications Pneumatic compression can be particularly effective for patients who have edema in an entire quadrant or have limited range of motion, strength and endurance. It is also useful for patients who have chronic wounds and those with limited mobility such as wheelchair users with feet in a prolonged dependent position. A recent survey of home users4 indicates that patients using pneumatic compression at home have high compliance and satisfaction levels. Patient preference and perceived

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effectiveness of commonly used home treatment modalities were examined. Patients who had insurance access to all treatment modalities ranked pneumatic compression highest in effectiveness and compliance. Those who had access to pneumatic compression used it consistently, ranging from daily to several times a week compared to those who relied on MLD and were less consistent. Cost and reimbursement issues Some insurance companies will cover pneumatic compression for home use, particularly for patients who do not respond adequately to conservative treatment (MLD, exercise, elevation, and compression). However, coverage criteria can vary with insurance companies. Some Canadian provinces will cover the cost of a pneumatic compression device for patients who have primary lymphedema. In this case, a qualified diagnosis of primary lymphedema would be required. It is best to contact individual insurance companies to verify coverage. Provincial health care advisors or the equip-

Some insurance companies will cover pneumatic compression for home use, particularly for patients who do not respond adequately to conservative treatment (MLD, exercise, elevation, and compression). ment supplier can assist with this process. For patients with swelling in the torso, abdomen or genitals as well as extremities, a more complex device is appropriate: one with an appliance that can decongest the abdomen, torso and the extremities. Insurance coverage for these pumps is more challenging and evidence of need and effectiveness for an individual patient must be documented. When selecting a system for a patient it is important to ensure that the patient can put on and remove the appliance; some systems are easier continued on page 16

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to use than others, especially for patients with limited range of motion. Calibrated gradient systems may also be necessary for extremity-only therapy in patients with fibrosis or very irregularly shaped legs or arms, or who have special circumstances requiring pressure adjustments over specific areas.

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pe No n mi Ap na ril tio 15 ns ,2 01 5

Using pneumatic compression Therapists should be aware of contraindications to pneumatic compression use, such as in cases of: n Active malignancy (although pneumatic compression can be used in providing comfort in terminal illness) n Unhealed fracture or high potential for fracture (such as severe osteoporosis) n Unresolved DVT (deep vein thrombosis) or pulmonary embolism n Acute infection n Uncontrolled CHF (congestive heart failure) n Severe arteriosclerosis or other ischemic vascular disease

Inflammatory phlebitis Pregnancy (avoid compression over abdomen) A pump with an extremity sleeve should not be used if swelling is present in the torso (axilla, breast, chest, abdomen, hips, or genitals). In these cases a torso-extremity appliance (pants or jacket) should be used. The amount of compression can be customized and should be guided by patient comfort in accordance with the prescribing physician’s instructions. Generally patients with Stage 1 lymphedema can achieve good decongestive results with lower compression while patients with Stage 2 or Stage 3 lymphedema often require higher pressure due to the need to penetrate areas of hardened tissue5. There is much discussion in the lymphedema community about the correct amount of pressure used for both MLD and pneumatic compression. It is interesting to note that aquatic therapy is a standard lymphedema treatment and that most pneumatic compression devices deliver less n

compression than submersion in shoulder height water6. As with MLD, a static compression (a bandaging system, compression stocking or compression garments) should be applied immediately after the pneumatic compression therapy session to contain the reduction and to prevent the area from refilling. As the edema reduces, the static compression system will need to be adjusted or upgraded to continue effective containment. Conclusion Most patients can benefit from a multi-modal approach to therapy, both at home and in the clinic. Pneumatic compression is an effective tool for achieving decongestion in both the acute and maintenance phases of treatment. Its high degree of patient acceptance, as well as availability, makes it a valuable treatment option for lymphedema patients. LP

A full set of references can be found at www.lymphedemapathways.ca

O

canadacares.org

Canada Cares

Caring Communities

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CANADA CARES Caring Communities AD BEING CREATED

Caregiver Friendly Workplace Award

In partnership with

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INSPIRATION, INFORMATION AND OPPORTUNITY FOR CANADIANS WITH DISABILITIES

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HEALTHCARE CENTRE

Canada Cares is a not-for-profit that supports, celebrates and recognizes family and professional caregivers.

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In partnership with

INSPIRATION, INFORMATION AND OPPORTUNITY FOR CANADIANS WITH DISABILITIES

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Spring 2015

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Treatment Approaches

Kinesio taping and lymphedema

The phenomenon of the mysterious black tape A look into an alternate method said to encourage the movement of fluid beneath the skin. By Ruth Coopee

uriosity regarding Kinesio Taping reached its height during the 2008 summer Olympics. Newspapers, magazines and newscasts hypothesized the purpose of the “mysterious black tape” pictured on an American beach volleyball player. What is this phenomenon? Where did it come from? How does it work? Will it help with my lymphedema?

Origins Dr. Kenzo Kase, a Japanese born and American trained chiropractor, started exploring the use of traditional athletic tape to treat soft tissue injuries. He specialized in rehabilitative and therapeutic medicine, and found that it reduced edema and pain but immobilized tissue. He was fascinated with kinesiology and looked for a less rigid elastic tape that replicated the properties of skin and muscle to help the body to heal itself. He approached American tape manufacturers to develop such a tape without success. Support then came from his native Japan,

Ruth Coopee OTR/L, CHT, CLT, LMT is owner of Body Holistics Inc in Pinellas Park Florida. Certified MLD/CDT in 1997, Kinesio Taping instructor in 1998. In 2004 awarded “Instructor of the Year” at the 1st USA Kinesio Taping Symposium for her work with lymphedema. She has authored extensively on lymphedema and orthopedic applications.

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Growing popularity in Asia led to expansion of the Kinesio Tex Tape® and the Kinesio Taping Method® to the USA market in 1994 and later to European markets, fulfilling Dr. Kase’s dream to “Tape the World for Health” and sparking the Elastic Taping phenomena. The media exposure of athletes with bright coloured tapes in “spiderlike” patterns has catapulted this into a large global industry and stimulated research into its efficacy, primarily for sports injuries.

where the Nitto Denko company worked with him to develop Kinesio Tex Tape®. In the early 1970s, Kase introduced the tape and the Kinesio Taping Method®. He began teaching the technique to other medical professionals and founded the Kinesio Taping Association (KTA) in 1984. Japanese athletic trainers began the first sports applications in Japan with volleyball players, resulting in worldwide exposure of the tape technique during the 1988 Seoul Olympic Games.

Photo: monicanelsonfitness.com

C

Special elastic tape A special elastic cotton woven fabric tape is applied to stretched skin to stimulate the neurosensory system and activate the physiologic mechanisms of skin, lymphatics and muscle to modify functional biomechanics, reducing pain and inflammation. The elastic cotton fabric is manufactured using the same concept as compression garment material. A central elastic core is wrapped with 100% cotton thread and then woven into a fabric. A medical grade heat-activated

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Compression

Club

Conversations in Changing Practice & Improving Patient Outcomes go.3m.com/CompressionClub Join the 3M Compression Club

3M and Coban are trademarks of 3M. Used under license in Canada. © 2013, 3M. All rights reserved. 1304-00993

As health care providers, you play an important role in improving the quality of life of your lymphedema & chronic edema patients, especially when it comes to compression bandaging.

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We invite you to visit our online compression club to network, ask questions, and learn from one another. Share tips & tricks, connect with colleagues, or ask the experts all your compression-related questions. • discuss & share your own experience treating patients with lymphedema • learn from colleagues and industry experts • stay up-to-date on industry news and events

Learn More To learn more about 3M Coban 2 Layer Compression System Products, visit us at www.3m.ca/coban2layer, contact your 3M Critical & Chronic Care Solutions representative or call the 3M Health Care Customer helpline at 1 800 364-3577. These products can be ordered from your local distributor.

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Elastic tape is available on the shelf in your local pharmacy chain store with instructions in the box, but the secret lies in training for it to be effective and to adhere to precautions outlined. New Methods (Acu-taping, Cure Taping, Spiral Taping, Kinesiology Taping) have branched off, maintaining roots in the original basic functional concepts of the Kinesio Taping Method®. Research into its efficacy in sports, orthopedic injury4, 5 suggests the effect of Elastic Taping on edema has been positive6, 8, 9. In regards to its effects in the area of lymphedema, the majority of research is in Grade II and III lymphedema and shows it will not replace compressive garments or CDT. Additional studies see it as a valuable adjunct to treatment in both venous insufficiency1, 2 and upper extremitylymphedema3, 7, 10 and beneficial for short-term use10.

The tape stretches in length only and may be cut into various widths and shapes depending on the goal of treatment. A typical application involves positioning joints and tissues to be taped on stretch to create a lifting effect of skin on recoil and avoid “shearing forces”.

adhesive is then applied in a specific “wave” pattern, leaving holes in the fabric to allow the skin to breathe and perspire. The pattern resembles the whorls of a fingerprint and the reduction of adhesive makes the tape thinner and lighter, reducing the perception that it is on the skin. The elastic fabric is then applied to a paper backing with a 10% stretch. The paper backing has marks to assist in measuring and cutting various strips. The paper backing also assists in application technique for holding and controlling tension. A paraffin coating is often applied to the surface of the fabric to reduce penetration of water for prolonged wear in sports and areas of perspiration. 20 L y m p h e d e m a p a t h w a y s . c a

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Basic functional concepts as they relate to lymphedema application The tape stretches in length only and may be cut into various widths and shapes depending on the goal of treatment. A typical application involves positioning joints and tissues to be taped on stretch to create a lifting effect of skin on recoil and avoid “shearing forces”. The beginning and end of the tape is applied with “0%” tension to prevent pulling on the skin that can result in blister formation. The active part of the tape is applied with pull off paper tension. It is important to note that when dealing with fragile tissue – less tension is better. The tape is rubbed to activate the adhesive and assure adherence. Once applied it may not be reapplied, as skin debris will limit adhesion. When the body returns to resting position, there is a lifting of the skin and in some areas convolutions are noted. The tape is worn continuously for three to five days and can tolerate showering and swimming in some circumstances. Limitations Adherence of the tape to skin is basic, so skin must be clean and free of oils and loose cell debris. Body hair may need to be shaved or clipped and tape

“adherents” may be used to increase attachment and improve length of wear. Tape applications may also roll up with donning clothing or tight garments so care needs to be taken. PRECAUTIONS Kinesio Taping applications are relatively harmless except to skin. Allergy to adhesives or latex may warrant application of a test strip on an unaffected area (stomach) to assure there are no product reactions. Fragile skin may require “Gentle Tape” (Spider Tech®) that has a special adhesive that reduces irritation. Care needs to be taken in application not to overstretch the tape, as this will cause sheering forces resulting in blistering of the skin. Tape should not be applied over an area of cellulitis/infection, open wound, malignancy or blood clot. It may be applied to “old” irradiated skin to soften fibrosis and lift scar. It is best to err on the side of low tension to avoid sheering forces on the skin from incorrect tension.

Histamine response (allergy) to adhesive.

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Photo: www.medbridgeeducation.com

(of most benefit to Grade I and early onset lymphedema) 7 facilitate improved anatomical alignment of muscle/joint for performance of therapeutic exercise and functional activity 8 improve kinesthetic awareness of proper posture and structural alignment 9 increase sense of control and application can be taught to caregiver for increased independence

Although tape is available everywhere, patients are cautioned on the “do it yourself activity”. It is essential to determine if it is right for you and to prevent injury. Seek the assistance of a trained therapist who can help you in individualizing your taping and guide you along the way. LP

More information may be found at www. stepup-speakout.org. References are available at www.lymphedemapathways.ca

How does it work? Effects of the tape on the lymphatic mechanisms The tape attached to the skin amplifies skin movement during daily activity and exercise creating pressure changes in the superficial and deeper tissues facilitating the movement of fluids in the tissues. Applications may be used on the trunk to lift and create an area of reduced pressure to facilitate proximal drainage. In areas of fibrosis and scar, the lifting effect of the tape will improve multilayer skin movement, loosening adhesions. A special taping for the diaphragm can improve respiratory capacity by increasing expiratory volume. Benefits for lymphedema The following is a brief list of benefits observed in this therapist’s clinical experience over the past two decades. Taping is an invaluable tool for accelerating edema reduction time when used in combination with compressive bandaging, making it cost effective. Taping can: 1 reduce edema, relieving pain or abnormal sensation associated with tissue pressure 2 assist in proximal drainage and in areas that are difficult to bandage (i.e. posterior axilla/upper arm, head and neck, trunk superior pubic area) 3 reduce or replace finger or toe bandages 4 assist in reduction of adhesions seen in fibrosis, scar and Axillary Web Syndrome 5 support and encourage skin movement under garments and bandages for Grade II and greater lymphedema 6 be beneficial to patients who are non-compliant in garment wear, or provide for short term “holiday.” Spring 2015

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Personal Perspectives

5

stages of my

lymphedema journey

By Nancy Tvarok

was diagnosed with breast cancer in 2003. I had a mastectomy, chemotherapy and radiation. Cancer…gone! Within six months of the end of my treatment, swelling started in my left arm. I was diagnosed with secondary left arm lymphedema. That is where my journey with lymphedema began, in stages that went something like this. Stage I

I do NOT have a clue! Lymphedema was not going stop me. I was on a mission to “get back to normal”. Within three months of my lymphedema diagnosis I had TRAM (transverse rectus abdominis) Lymphedema flap breast reconstruction was not going surgery. I stop me. I was on thought the a mission to lymphedema “get back would go away. I did not want to normal”. to listen to my physical therapists. They had done a good job explaining my condition, showing me how to compression wrap, and giving me incredible massages. But every time I went for treatment, I just stared at the poster of the lymphedema man in the treatment room. It appeared to me that I have more than enough lymph glands to take care of all my swelling needs. Total denial on my part.

Stage II I’m going to beat this thing. Or get more edema in the process… I joined clinical trials. I increased my strength and reduced my swelling through the PAL (Physical Activity and Lymphedema) study. I also spent 30 days visiting a hyperbaric chamber for 90 minute “dives” (like a sea hunt adventure without the dolphins). That didn’t fix anything but I now do have two things in common with Michael Jackson. We both wore one glove and hung out in hyperbaric chambers! Unfortunately I picked up trunk edema along the way. My body was prime for more swelling. This was extremely frustrating for me. Out go the pretty bras and in come the heavy duty ones. Finding a good bra that gives you style, comfort and compression is like the search for the Holy Grail. I have a drawer full of experiments that have various degrees of success. The perfect bra for trunk edema has not been created yet! Stage III Okay I guess I better get used to the lymphedema thingy What am I supposed to do again? I call this getting very friendly with your physical therapist. Going for therapy three times a week, applying kinesio tape, wrapping your chest every night, wearing your compression glove and sleeve every day and being the perfect patient/pupil.

Nancy Tvarok was born and raised in New Jersey. She lives in Medford NJ with her husband Ed, daughter Jessica, son-in-law Evan and their baby Carter. She has been working for The Protocall Group for 35 years as the Director of Training and Development.

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Stage IV If I’m doing everything right, why can’t I be cured? AKA— pity party I can accept getting breast cancer but I’m really unhappy that the treatment that cured me also gave me arm and trunk lymphedema. Stage IV comes and goes. The pity party lasts anywhere from a few minutes up to a day. Then I just get tired of hearing myself whine and I get on with my life. Stage V Acceptance This is hard for me. I am a perfectionist and do everything with the expectation that I will be successful. Perfection to me is no more lymphedema – but that is not going to happen. Lymphedema has taught me that acceptance does not mean failure. Acceptance means treating my mind and body kindly; staying healthy, wearing my compression garment, wrapping at night, stretching and exercising. I also stay connected to a fabulous physical therapist who understands my condition. We are a team and she keeps me motivated to do my best. LP

YOUR THOUGHTS If you would like to share your story and advice with others, contact us via email:

canadalymph@live.ca

Photo: CanStockPhoto

I

Be sure to put “Personal Perspectives” in your subject line.

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Affiliate Profile

The Lymphedema Association of Newfoundland and Labrador (LANL)

The Lymphedema Association of Newfoundland and Labrador (LANL) became a reality in December, 2014. LANL was the vision of a dedicated group of medical professionals involved with lymphedema patients along with lymphedema patients and their advocates. This group has been supporting the lymphedema community for years on a volunteer basis, without a formal base and using their connections and resources to make the group a success. Lymphedema patients in this region are hoping that LANL will not only unite and empower patients, but ease the burden of the medical professionals who have dedicated much of their own time and

other resources to supporting the lymphedema community. LANL is also inspired by the success of the other provincial lymphedema associations and the Canadian Lymphedema Framework in enhancing the lives of lymphedema patients. With provincial incorporation completed, LANL has made its application for status as a registered charity. Thanks go to the other provincial associations for their assistance with that process. The immediate next steps are the administrative realities such as establishing the Board of Directors, setting

membership fees, recruiting members and such. But even those mundane tasks generate more enthusiasm, as each is a step forward. One of the biggest challenges will be reaching people all over this geographically great province. Website design has begun, and you are encouraged to contact us at lymphedemanl@gmail.com. An exciting major launch initiative is in the tentative planning stages, with both medical and patient information sessions to be held in conjunction with industry. 2015 promises to be a milestone year for LANL! LP

Photos: CanStockPhoto

LANL will give structure and continuity to the ongoing mission of those who have been making it a reality. That mission was and is to: •provide support to patients and families who are affected by lymphedema •ensure individuals living with lymphedema have access to treatment •provide lymphedema education •encourage and promote lymphedema research, and •promote care and treatment of lymphedema based on best practices.

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

Atlantic Region: Atlantic Clinical Lymphedema Network

www.atlanticlymph.ca

British Columbia: BC Lymphedema Association

www.bclymph.org

Manitoba: Lymphedema Association of Manitoba

www.lymphmanitoba.ca

Newfoundland and Labrador: Lymphedema Association of Newfoundland and Labrador

www.lymphnl.com

Ontario: Lymphedema Association of Ontario

www.lymphontario.ca

Quebec: Lymphedema Association of Quebec

www.infolympho.ca

Saskatchewan: Lymphedema Association of Saskatchewan Inc.

www.sasklymph.ca

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Helpful Suggestions

Hints and Tips Elevate for relief Leg lymphedema has its own set of challenges because of the effect that gravity has on lymphatic flow. If your job requires you to sit all day – position a blue-box or garbage pail upside down under your desk, and elevate your affected leg whenever possible. Anything you can do to reduce the amount of time your leg is just hanging will benefit you. Ensure you get up at least once per hour – walking around the office, or climbing

up and down the stairs, to get that lymph fluid moving! Shopping fashionistas Finding clothing that will fit a larger or swollen arm can be a challenge. Some style options that can help you in your search for tops include dolman sleeves, kimono sleeves, or bell/butterfly sleeves. LP

Source: LympheDivas.com

Send us your hints and tips Why not make it easier for those living with lymphedema by sharing your practical day-to-day living tips with us? We invite patients, caregivers and health professionals to send in your suggestions to canadalymph@live.ca.

Photos: CanStockPhoto

It’s not your fault With all the lists of dos and don’ts – many people worry that there might have been something they could have done to prevent their lymphedema. There has been limited research as to what triggers may be responsible. Recent research is indicating that people may be predisposed to a malfunctioning lymphatic system. Therefore, just remember – IT’S NOT YOUR FAULT. What is important is that you start to manage the chronic condition early so that you have the best chance of living a healthy, normal life with lymphedema.

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Wear Ease,® Inc.

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www.wearease.com

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Technology Advances

Did you know?

Using your smartphone to find lymphedema therapists Look4LE is a mobile app developed by the American Lymphedema Framework Project (ALFP), through funding provided by the US National Library of Medicine, to help find therapists in a specific area who are trained to treat lymphedema (LE). The app currently features almost 1,000 LANA (Lymphology Association of North America) certified therapists (including Canadians) and the list is constantly growing, with plans to add the names of 135-hourtrained therapists worldwide. You can find therapists using the directory, or by accessing the app’s built-in map feature to search by location name, zip or postal code, or your current location. Each therapist has a contact page with phone, street, web, and email address information. You can view a map, get directions, and add the therapist to your system contacts. There are also a number of resources listed in the app with links to 14801 Linotrade annonce 1/4 horiz._horizontal webpages and organizations.

LANA certified therapists If you are a therapist and your name is in the LANA directory, you should now be listed in the Look4LE app in the same way. LANA-certified therapists will see the LANA logo by their name (visible now in the android and computer version and pending approval in the iPhone/iPad version). We encourage you to register to update your Look4LE profile and review the public display. You can login to review your information for accuracy and to update and submit changes.

Not LANA certified?

All lymphedema therapists who have a minimum of 135 hours of training are invited to register and create a profile by submitting verification of their certification in lymphedema management from a LANA recognized curriculum. Registration will be reviewed and approved for public2:09 display the Look4LE database. 12-10-25 PM in Page 1

How much does it cost?

The newly updated Look4LE is available free for your iPhone or iPad in the App Store and for Android devices from Google Play.

Future plans

The ALFP hopes therapists will share this resource with their patients and colleagues to support access to trained therapists when patients relocate or travel nationally and internationally. Your feedback is welcomed on how you like the Look4LE app and what you would like to see modified. The informatics research team at ALFP is planning to mine the user’s search activities and suggest resource and training needs of particular geographical regions to better serve LE patients. The research results will be shared with Pathway readers in the future. LP

Source: Professor Jane M. Armer and Professor Chi-Ren Shyu of the University of Missouri - Columbia, USA and American Lymphedema Framework Project (ALFP). www.alfp.org

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Education

Letters....

Canadian and International Events September 25th World Congress of Lymphology conference boasts 7-11, 2015 an expected 1,000 clinicians, basic and clinical scientists, San Francisco, USA therapy professionals and patient advocates as well as leading faculty and international guest speakers. n www.lymphology2015.com The 2nd Canadian National Lymphedema Conference October will be co-hosted by the Canadian Lymphedema Framework 23-24, 2015 Calgary, Alberta and the Alberta Lymphedema Association, in collaboration with the University of Calgary. Prof. von der Weid and Dr. John MacDonald are two of the confirmed keynote speakers. n www.canadalymph.ca May 2016 Asia Pacific Lymphology Conference SAVE THE DATE 26-28, 2016 Darwin, Australia Organized jointly by the ILF (International Lymphoedema Framework) and the ALA (Australasian Lymphology Association). n www.2016asiapacificlymphologyconference.com 2015 Dates Therapist Training and Certification Programs. Courses are offered by various educational schools Canada and the United States for qualifying healthcare professionals. Some provincial lymphedema associations also organize or host educational courses. We encourage you to refer to the websites of our advertisers and the individual provincial associations for specific dates and locations.

The Canadian Lymphedema Framework (CLF) wishes to thank key industry partners for their financial support in making this magazine a reality. Platinum Sponsorship

Letters to the Editor... I receive d my Pa thways magazin e this m o rning… it looks great!! I c a n to read it later th ’t wait is evenin I’m reall g. y please d with th new Ca e nadian Lymphe Framew dema ork pati ent edu pamphle c ation t as well . Bev L anning,

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We would love to hear from you... If you would like to drop us a line, please do so at: canadalymph@live.ca

The CLF has affiliate agreements with its provincial partners for distribution of Pathways including customized inserts. Alberta Lymphedema Association Atlantic Clinical Lymphedema Network BC Lymphedema Association Lymphedema Association of Manitoba Lymphedema Association of Newfoundland and Labrador

Silver Sponsorship

Lymphedema Association of Ontario

CANADIAN LYMPHEDEMA FRAMEWORK

PARTENARIAT CANADIEN DU LYMPHOEDÈME

About the CLF The Canadian Lymphedema Framework is an academic and patient collaboration, working to improve lymphedema management for lymphedema and related disorders in Canada.

26 L y m p h e d e m a p a t h w a y s . c a

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Lymphedema Association of Quebec Lymphedema Association of Saskatchewan Charitable Registration 85160 1260 RR0001

Spring 2015

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C

1

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National Lymphedema

Conference

SAVE the DATE

Calgary • October 23 - 24, 2015

Co-hosted by the Canadian Lymphedema Framework and the Alberta Lymphedema Association in collaboration with the University of Calgary. CANADIAN LYMPHEDEMA FRAMEWORK

Alberta Lymphedema Association

PARTENARIAT CANADIEN DU LYMPHOEDÈME

This collaborative event will bring together a national audience to strengthen the discussion of lymphedema care in Canada. Health professionals, researchers, patients and community leaders from Alberta and across Canada will gather in Calgary to learn from international experts in lymphedema research, diagnosis, treatment and self-care.

CM

MY

CY

CMY

K

Scientific Committee Co-chairs: Dr. Pierre von der Weid (Alberta)

Dr. David Keast

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education research partnerships

canadalymph.ca

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Key Topics

Keynote Speakers

• Surgical approaches • Research advances • Epidemiology • Models of care • Measurement

• Exercise • Self-care • Aqua lymphatic therapy • Coping/adapting to change • Panel of experts

Dr. John MacDonald

Dr. Anna Towers

Dr. Christine Moffatt

Dr. Roanne Thomas

Dr. Pierre von der Weid Dr. Jay Granzow

SPECIAL

PLUS A

PHYSICIANS-ONLY WORKSHOP

SPECIAL NETWORKING & POSTER RECEPTION

October 23 • 5:00 - 7:00 pm

Friday evening

Learning Stream 1

Learning Stream 2

(Ontario)

(Quebec) (Ontario)

Dr. Margie McNeely (Alberta)

Learning Stream 3

• lymphedema patients

• newly certified therapists

• those at risk

• general health professionals

• experienced lymphedema therapists

• family members and caregivers

• graduate and medical students

• educators

• garment fitters

• researchers

• patient advocates

Conference Deadlines

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Early-bird registration: July 1

Hotel discount: September 1

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Pathways Spring 2015  
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