Pathways Winter 2020/2021 (Volume 10, Issue 1)

Canada’s Lymphedema Magazine

Pathways

Acc Path ess w Onli ays ne See pag e4

WINTER 2020

Empowering patients and professionals

Celebrating

35 issues Lymphatic surgery Imaging tools

Therapy for lipedema Compression tips

NOUVEAU...

une sélection d’articles traduits en français disponible au fr.infolympho.ca/revue-pathways

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Editor’s Message

“ Education is the most powerful weapon to change the world.” –Nelson Mandela

P

lastic and reconstructive surgeon, Dr. James Kennedy, provides our readers with a Canadian perspective of surgical lymphatic options. His views are consistent with previous CLF authors and conference presenters on this topic, in that patient selection and integrating surgery into conservative therapy is so important.

Guenter Klose, a well-known educator, lecturer and therapist, incorporates key elements from the European Lipedema Consensus Group into his clinical practice as well as his article. We have already received some feedback regarding the interview with Dr. Tobias Bertsch (Fall 2020) and expect that this Klose article will generate some opposing views as well.

Savannah Paetzel, a remarkable 17-year-old high school student in Texas, is our youngest ever author. Her article on lymphatic imaging tools was part of a research project (in place of an in-person internship due to COVID-19) under the tutelage of lymphatic specialist, Dr. Melissa Aldrich. Although many of the diagnostic tools she refers to may not be accessible outside the USA, it is still prudent to be informed about imaging tools that exist and how they can change the diagnosis of lymphedema in the future. You can learn more about Savannah on the website she founded www.projectlymph.com.

Self manual lymphatic drainage can be an effective tool for many patients to augment their sessions with a certified lymphedema therapist. However, this task

can be tedious and boring for some people.

Lisa McKann encourages readers to try her practical suggestions for making self MLD a more pleasurable experience, and perhaps something to look forward to in your day.

We have expanded our customary half page hints and tips column with a special 2-page spread on compression tips.

Mona Al Onazi and Rachel Wang, both in Physical Therapy at the University of Alberta, have assembled suggestions to address common complaints from patients about wearing compression. If even one of these tips can help one reader wear their compression garment regularly, the authors (and our Editorial Board) will be happy.

We hope you enjoy our magazine cover.

Over the years, our striking covers have generated wonderful feedback and so, this being our 35th Pathways issue, we thought we would bring all of our covers out of the archives and back to life. Thank you Joe Finbow, an amazing graphic designer!

Thank you as well to everyone for an overwhelming response to our readers’ survey. With the survey deadline past publication deadlines for this issue, we will be sharing the survey results in the Spring 2021 issue. You can read the letters to the Editor on page 22, to get a sneak preview at what our readers had to say.

We are expanding this magazine’s online distribution. A digital copy is included in your magazine subscription price, whether you subscribe directly to the CLF,

or through a provincial lymphedema association. It’s as easy as sending an email to pathways@canadalymph.ca and putting DIGITAL REQUEST in the subject line, to be added to the distribution list for the digital copy of each issue.

This magazine is only one tool that the CLF offers to promote lymphedema education.

As part of its continuing education initiatives for health professionals, the CLF will be offering an accredited webinar learning series through the University of Alberta in Spring 2021. The CLF will also continue to offer Zoom webinars on various topics this winter and is already busy planning their bi-annual conference for 2022. Be sure to sign up to receive personal notifications of these events. Email admin@canadalymph.ca On a final note, I want to acknowledge how hard these COVID-19 times have been for everyone. Restrictions to work, social and daily activities have forced many of us to rethink our priorities and discover new interests and hobbies to fill the time.

If you are in a situation where you feel you can share some of your extra time now with the CLF, we are specifically looking for volunteers to help with the Pathways magazine. Whether your expertise lies in advertising, marketing or communications, we could use your support. I promise it will be fun and exciting to be part of this wonderful magazine production. LP

Visit the CLF Health Professionals Website Portal Anna Kennedy

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• Lymphedema related case studies by fellow professionals • PowerPoint slides to support your educational efforts • Select articles that are useful in your practice, such as research reviews • Patient photographs specific to lymphedema to enhance your presentations • Assessment tools to support your practice www.canadalymph.ca

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Contents

Contemporary concepts in lymphatic surgery

5

A little old and a whole lot new.

Winter 2020 n Volume 10 Issue 1

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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 Angela Dunphy Mei Fu PhD RN FAAN Pamela Hodgson PT David Keast MD FCFP Lori Radke PT CLT Anna Towers MD FCFP Editor Anna Kennedy

Why is lymphedema so hard to diagnose?

Let’s talk about lymphedema imaging technologies.

.................................

Therapy for lipedema

Incorporating new clinical guidelines.

Putting the “self” into self MLD

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.

Subscriptions/return mail to Canadian Lymphedema Framework 4800 Dundas Street West, Suite 204 Toronto, Ontario M9A 1B1 Telephone: 647-693-1083 Email: pathways@canadalymph.ca www.canadalymph.ca Photos in this issue: J.Kennedy, G.Klose, L.McKann, J.Chaplin, Cancer Treatment Centers of America, Mayo Clinic, Shutterstock

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

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13

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Editorial Assistants Nicole Boulet Catherine Andrew

Subscription Rates (1 year) Canada - $30.

United States - $60.

International - $75.

Single copies and back issues - $8.

10

Yoga basics enhance Manual Lymphatic Drainage self management time.

16

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Compression garments for lymphedema

19

Hints and tips.

.............................

More Helpful Suggestions...

Talk about how you feel. Keep moving.

Listen to a podcast. You are in control.

20

Research Advances

The burden of lymphedema-related hospitalizations.

Lymphedema: a review of fundamental concepts.

Body mass index and lymphedema morbidity.

Discovery of a novel gene in primary lymphedema.

21

Education/Events/Letters

Canadian and International Events.

Letters to the Editor.

22

ACCESS PATHWAYS ONLINE Login information: www.canadalymph.ca/pathways-online User name: Pathways Subscriber Password: Surgery

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Surgical Report

Contemporary concepts in lymphatic surgery A little old and a whole lot new

By James Kennedy

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s readers of this magazine will already know, decades of research attest to the successful management and stabilization of lymphedema through nonsurgical means such as decongestive therapy, compression garments, manual lymphatic drainage, and rigorous skin care. Conversely, surgical treatment for lymphedema was historically quite limited and often reserved for the most severe and selected cases. The failure to develop novel surgical procedures seemed to result from a primitive understanding of lymphedema progression and only basic anatomical knowledge of the microcirculation.

Surgical management for lymphedema is still in its infancy and comprehensively relies on a coordinated interplay with conservative therapy.

Advances in real-time imaging of the lymphatic system and evolution of extremely fine surgical instruments has led to enhanced interest in surgical options for lymphedema.

Surgical awareness has been reinforced through a greater exposure of lymphedema in the public eye and due to patient demand for a potential surgical choice. Despite this,

surgical management for lymphedema is still in its infancy and comprehensively relies on a coordinated interplay with conservative therapy.

A variety of surgical options have been proposed for lymphedema in the past. Some of these older techniques have limited application today but are still mentioned here for historical context. Surgical management for lymphedema can be classified into three categories based on mechanism of action. These include: 1) preventative methods; 2) excisional techniques, 3) physiological procedures, and 4) combined modalities. This article will briefly discuss each category and the various options within them.

Dr. James Kennedy MD, PhD, FRCSC, ABPS is a Plastic and Reconstructive surgeon and site chief at the South Health Campus hospital in Calgary, Alberta. He is a faculty member in the Cumming School of Medicine at the University of Calgary. His practice predominantly focuses on breast reconstruction, microsurgery, trauma, hand surgery, gender transformation, and lymphatic reconstruction.

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1 Preventative methods Preventative opportunities are often considered in secondary forms of lymphedema that may develop in an iatrogenic fashion after lymph node dissection or in response to another ancillary procedure. The various strategies either try to provide a guide towards a more detailed and refined dissection of lymphatic basins in cancer surgery, intraoperatively identify susceptible lymphatic channels and preserve them, and/or reconstruct damaged lymphatic channels at the time of potential injury. All are designed to prevent or limit the development of lymphedema at the time of or near the inciting event.

Sentinel Lymph Node Biopsy is a form of lymph node dissection in oncologic surgery that is based on removing or sampling lymph nodes that are the first order drainage of the affected region (e.g. breast) that may have cancer present. By “sampling� the first or second Ly m p h e d e m a p a t h w a y s . c a 5

Long-term outcomes for the latest techniques are lacking and direct comparisons are often difficult. lymph node that may be draining the region of interest, the surgeon can determine if there has been spread to the lymph node basin before committing to a more extensive and definitive full lymph node dissection. Sentinel lymph node biopsy has been shown to reduce the incidence of lymphedema in breast cancer from 30% to 6%.1-3 Sentinel node biopsy has become and remains a major tool that is routinely applied in melanoma, breast and gynecological malignancies.

Reverse Lymph Node Mapping. Alternatively, in a region potentially affected by cancer, if lymph nodes that are draining the area could be differentiated from those draining a nearby extremity that is at risk of developing lymphedema, then it is possible to selectively sample only those from the region of interest.

Reverse lymph node mapping entails using two different dyes that are injected at different regions in an attempt to separate the lymph node drainage patterns. This TABLE 1

Surgical options for lymphedema 1 Preventative Methods

Sentinel Lymph Node Biopsy Reverse Lymph Node Mapping n LYMPHA n n

Image: Sistrunks Procedure. John Chaplin, Auckland, New Zealand

2 Excisional Techniques

Charles Procedure Sistrunk Procedure n Suction Assisted Lipectomy n n

3 Physiological Procedures

Lymphatic-lymphatic Bypass Lymphatic-venous Anastomosis n Vascularized Lymph Node Transfer n n

allows identification of the lymph nodes that are draining the neighbouring limb while still allowing labelling of those nodes that are draining the affected body part (e.g. breast).

The surgeon can then selectively leave those nodes that are draining the associated limb and sample only those that are from the affected body part. This has been shown to reduce the incidence of lymphedema to 4.1% in one meta-analysis.4 Despite being an attractive concept, reverse lymph node mapping has not been routinely utilized in clinical practice as often both dyes label the same lymph nodes and in that case, if those are left behind, then there is the chance of leaving occult metastases in the region.

Lymphedema Microsurgical Healing Approach (LYMPHA). Lymph nodes can be labelled and specific ones removed, as previously mentioned, but lymphatic channels are still likely violated to some degree. Instead of leaving the damaged lymphatic channels, LYMPHA entails reconstructing them by rerouting the damaged channels into nearby larger veins at the time of the initial surgery.5 Despite being an appealing concept, its practicality is questionable since not every patient will develop lymphedema from surgical lymph node dissection. Therefore it has been hard to reason universally applying an additive and much longer procedure, with greater risk, to every patient. Furthermore, coordinating at least two surgeons to be available for this type of case may limit surgical care in an oncologic timely fashion.

2 Excisional techniques Preventative strategies are unable to be applied to every patient and offer no benefit to those with established lymphedema. Many of the original surgical procedures for lymphedema tend to fall within the excisional category whereby surgeons concentrated on direct removal of lymphedematous tissue to reduce overall limb volume. The Charles and Sistrunk procedures are more of historical significance and only sporadically used today in the developed world.

4 Combined Treatment n

Combination of above

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Charles Procedure. This procedure is named after Major-General Sir Richard Henry Charles

who was a physician and surgeon to King Henry V. He originally described surgical management of elephantiasis of the scrotum yet never actually performed the surgery on limbs.6 The Charles procedure involves a radical excision of skin, subcutaneous fat, and sometimes fascia from the affected extremity.

Skin grafts are then placed onto remaining muscle to close the area of resection. It is simplistic and does remove significant bulk to the point that limbs that were previously not functional can be salvaged. However, it is rarely used today due to the extensive nature of the surgery, the potential for poor or delayed wound healing, poor cosmesis, and that it tends to make adjacent regions of lymphedema much worse. Moreover, lymphedema often returns in the operated extremity 5-10 years later and can be even more problematic.

Sistrunk Procedure.

In order to avert the poor cosmesis and extensive wounds that resulted from the Charles procedure, the Sistrunk modification was created to preserve skin and subcutaneous fat to avoid the need for a skin graft while still directly removing lymphedematous tissue. It tended to be divided into at least two stages whereby up to half of the excess volume of a limb was approached in each stage separated by a 3-6 month period. For instance, the first phase may involve making an incision and elevating skin and subcutaneous fat as a flap of tissue as far as possible both anteriorly and posteriorly. The underlying lymphedematous tissue is then excised down to fascia and removed, similar to the Charles procedure.

The difference is that the flap of tissue that was elevated is laid back down to close the defect instead of using a skin graft from another region. The second phase entails making an incision directly opposite to the original incision and elevating flaps of tissue once again to allow removal of affected tissue that was not addressed in the first phase. Despite improving cosmesis and reducing the length of operative time, this technique never really gained much popularity as it had limited success.

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to a suction pump inserted through small incisions. Not only does it remove fat directly but the cannulas also create relative voids in the tissue that can allow greater compression postoperatively. The new volume is maintained through a smaller compression garment.

Liposuction equipment has evolved from standard suction assisted devices (that are still most commonly used), to power-assistance, ultrasonic, and laser that enhance tissue breakdown to increase efficiency. The utility of liposuction in lymphedema has shown very impressive results. Large volume reductions approaching 100% compared to the contralateral normal side have been reported.7 Brorson (2016)8 has also shown that volume reductions through liposuction can persist in long-term follow up studies with compression garment use. Furthermore, health-related quality of life indicators are improved and the incidence of cellulitis dramatically decreased with liposuction.9-10

3 Physiological procedures Lymphedema develops due to an imbalance between lymph fluid production and the transport capacity of the lymphatic system.

Attempts to address the transport capacity in the past were of limited success. More recent developments in reconstruction or augmentation of the transport mechanism, however, have created optimism and changed the landscape of lymphatic surgery.

Lymphaticlymphatic Bypass.

Although not routinely applied and included more for historical interest, this procedure involves bypassing a lymphatic obstruction using other regional lymphatics from the same patient. For instance, in cases of leg lymphedema with an obstruction at the groin, lymphatic channels from the contralateral leg can be tunnelled over to the affected leg and anastomosed

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Image: Cancer Treatment Centers of America - CTCA

Suction Assisted Lipectomy. Recent research has demonstrated that there is a unique interaction between lymphedema fluid and adipocytes that sparks excessive fat development. It has also been shown that overweight individuals are at risk for more severe presentations of lymphedema.

It therefore makes sense to surgically address the fat compartment of lymphedematous limbs in some way. Physiological procedures (to be discussed in the next section) do not address the formed adipose tissue component.

Ablative surgical options thus far, have involved extensive incisions and long duration procedures to successfully remove large volumes of lymphedematous tissue. Suctionassisted lipectomy, or more commonly known as liposuction, on the other hand, is less invasive and since its development 40 years ago has been more routinely applied to lymphedema. Liposuction, following similar principles in cosmetic surgery, removes excess fat and some fibrous tissue utilizing a cannula (narrow surgical tube) connected

A compliant patient, with worsening limb function, minimal improvement using nonsurgical means for at least 12 months, and realistic expectations are paramount. to lymphatic channels so as to bypass the obstructed zone in the groin. Drainage then occurs from the affected leg into the contralateral unaffected side. Unfortunately this technique is fraught with risks such as the real potential of causing lymphedema in the normal leg and often involves very large scars, while the long-term patency of the lymphatics transferred is questionable.

Lymphatic-venous Anastomosis (LVA). This technique was developed mainly in response to the issues with lymphatic-lymphatic bypass

and to address the superficial lymphatic system. Instead of using lymphatic channels from another area, intact lymphatic channels in the affected extremity are transferred under microscope guidance to nearby veins or venules. This requires having intact lymphatic vessels that have functioning smooth muscle cells that can transport lymphatic fluid into the nearby vein once transferred.

The transfer serves as a shunt allowing flow of lymphatic fluid from an area of high pressure (lymphatic channel) to an area of low pressure (nearby vein). LVA has been shown to be effective in cases of mild-moderate lymphedema in reducing limb volume, improvement in overall symptoms, and decreasing the incidence of cellulitis.11-12 In one surgical session, that may last 5-6 hours,

TABLE 2

Potential risks and complications of the most common surgical treatment options for lymphedema Procedure Potential Risks/Complications

All have general risks such as risk of anesthetic, bleeding, infection, and potential to make lymphedema worse.

Suction-assisted lipectomy

Images: John Chaplin, Auckland, New Zealand, and The Mayo Clinic

•Contour irregularities to affected limb from over-resection of certain areas compared to adjacent regions.

• Theoretically can damage intact lymphatic channels.

Not proven but can be reduced by suctioning longitudinally in limb.

•Minor wound healing problems • Transient paresthesias (“tingling” to limb) that resolve with time.

Lymphatic-venous anastomosis (LVA)

•Longer operative time than liposuction •Minor wound healing issues •Potential for development of cellulitis •Rare allergy to Indocyanine-green dye

Vascularized lymph node transfer (VLNT)

•Potential to cause lymphedema at site of lymph node harvest • Potential major nerve or vessel injury to region of lymph flap harvest • Larger scars and potential wound healing issues at both recipient and donor sites of lymph node flap •Longer operative time risks •Potential for flap loss and failure

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small incisions are made to allow 3-5 of these transfers to take place. LVA can be repeated in the same extremity to allow additional transfers at a later point. The main drawback is that LVA requires a specially trained surgeon that is able to perform “supermicrosurgery” so that transfers and anastomoses of lymphatic vessels <1mm in size can be undertaken. It seems to be most effective in early secondary lymphatic disease with limited fibrosis.

Vascularized Lymph Node Transfer (VLNT).

One of the most progressive surgical options for lymphedema, VLNT encompasses transferring a soft tissue flap (skin, fat, and sometimes fascia), that also contains lymph nodes, from one part of the body to the affected extremity.

It requires (under a microscope,) reconnecting arteries and veins that supply the flap of tissue with blood supply. Donor sites include areas such as groin, axilla, neck, and intra-abdominal omentum. The lymph node flap either acts as a “sump pump”, collecting lymph fluid and emptying into the connected vein, or may act as a mediator for new lymphatic channel growth.13-14 There is debate on the number of lymph nodes to transfer and where the lymph node flap should be placed in the affected limb. It is often a much lengthier surgery than any previously mentioned.

The potential to cause lymphedema at the donor site is a real risk and the procedure can leave very noticeable scars to donor regions.

However, vascularized lymph node transfer does seem to be effective in even severe cases and also with primary forms of lymphedema.15 The risk of causing lymphedema in the area of lymph node flap harvest can be reduced using a technique called reverse lymphatic mapping.16 Outcomes analysis has shown reductions in volume and circumference, improvements in quality of life domains, and decreased episodes of cellulitis.15,17-18 Autologous Free Tissue Transfer. There is some evidence that adding a flap of tissue (skin, fat, and muscle) with associated artery and vein, but without lymph nodes, can still Wi n t e r 2 0 2 0

serve as a bridge for lymphatic outflow. This derives mainly from experimental animal models but also anecdotal evidence from using free abdominal tissue transfer for breast reconstruction in cases of breast cancer.19-20 4 Combined treatment A better understanding of the goals of surgical management and the realities of individual procedures has led some lymphatic surgeons (me included) to adopt an integrated approach to lymphedema. Realizing that not all lymphedema patients are the same, the various techniques previously mentioned in this article can be applied in a way to maximize their individual benefits. For instance, in cases of severe lymphedema with a significant fibrous component, debulking the affected region using liposuction prior to attempting physiological lymphatic reconstruction only makes sense.

Conclusion The surgical management of lymphedema remains an evolving process. Undoubtedly,

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Surgical management requires subspecialty trained Plastic Surgeons that are familiar with lymphedema. surgical options for lymphedema have advanced since the origin of the Charles procedure. Physiological procedures are being refined, as we have learned that LVA may be more effective in early stages of lymphedema while later stages may be more appropriate for VLNT. In more recent years, a combined approach incorporating a form of ablative procedure along with a physiological procedure(s) will ultimately provide the greatest benefit to patients.

Still, long-term outcomes for the latest

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

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techniques are lacking and direct comparisons are often difficult. As surgeons, we have to realize that not every lymphedema patient is the same and not every patient would benefit from surgical intervention. Defining appropriate patient selection remains challenging but should center around a few fundamental concepts. A compliant patient, with worsening limb function, minimal improvement using nonsurgical means for at least 12 months, and realistic expectations are paramount.

The last aspect is often difficult to reconcile in the age of Internet medicine and exaggerated claims by a multitude of clinics and surgeons.

It is worth reiterating that despite improvements in surgical options, it has not supplanted non-surgical therapy. Instead, surgery has more recently become an additional modality in an integrated treatment strategy for lymphedema patients that still requires lifelong self-care and management. LP

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Diagnostic Tools

Why is lymphedema so hard to diagnose?

Let’s talk about lymphedema imaging technologies

By Savannah Paetzel and Melissa Aldrich

Introduction When looking to predict postsurgical lymphatic complications or diagnose lymphedema, a condition caused by the abnormal functioning of the lymphatic system, it is highly beneficial to image a patient’s lymphatic system.

The lymphatic system has been ignored by medical school curricula; the average time spent teaching students about lymphatics is less than 30 minutes.1 The resulting chasm of lymphatics knowledge in the medical community is compounded by the fact that a central tenet of human fluid homeostasis, the Starling principle, states that “spent” blood fluid/cellular waste returns through the venular system.

In 2010, Levick, et al. showed that this waste actually returns through the lymphatics—in fact, 1-2 gallons of fluid must return each day through lymphatic vessels.2 Unfortunately, many curricula have yet to include this information, so medical students may carry misbeliefs into the clinic, where lymphedema is frequently mistaken for edema or even obesity. The Stemmer’s sign, basically a pinch test, is often the only tool used by physicians to discern whether lymphedema is present.3 With all the misinformation and lack of knowl-

edge on lymphedema, it may not be surprising that the disease often takes years to diagnose.4 Patients, especially those with early-stage lymphedema, often leave the doctor’s office unclear on the state of their own health and without proper guidance on how to proceed.

Even when doctors are competent in office examination for lymphedema, classic physical signs of lymphedema may not be discernible.5 Lymphatic imaging can help physicians accurately diagnose lymphedema and subsequently decide how to proceed with treatment. Imaging also helps scientific researchers learn how the lymphatic system interacts with other bodily systems, paving the way for work towards alternative treatment options for those with lymphatic diseases.

Lymphatic imaging has also been used to prove to health insurance companies that certain treatment options, such as complete decongestive therapy (CDT), are necessary in improving lymphedema and thus must be covered financially.6-8 Numerous imaging techniques exist,9 each with benefits and limitations for visualizing lymphatics, sometimes making it difficult for doctors to reach a clear lymphedema

Savannah Paetzel is a senior at Round Rock High School in Round Rock, Texas. A primary lymphie, she founded Project Lymph, an online platform where she interviews lymphedema patients and specialists. She also serves as the Ambassador for the ILWTI’s Lymphie LARA. Melissa B. Aldrich is an assistant professor at UTHealth in Houston, Texas.

She directs several clinical studies of breast cancer-related lymphedema.

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diagnosis regardless of which modality they use. This article outlines the difficulties of imaging lymphatics and reviews various lymphatic imaging technologies available in order to understand why it is so difficult to accurately diagnose lymphedema and examine how we can move forward.

The lymphatic system and lymphedema The lymphatic system is a drainage network essential for the maintenance of fluid homeostasis and immunocompetence.6,7 Beginning in the interstitial spaces and ending in the great veins of the neck or thorax10, the system consists of small lymphatic capillaries that absorb interstitial fluid and cells to create lymph. Initial lymphatics bring lymph to the collecting lymphatic vessels, which transport lymph over long distances through lymph nodes and eventually to the blood. To achieve a continuous lymphatic output, periodic stress needs to be applied to the tissue (e.g., through arterial pressure pulsations, intestinal smooth muscle contractions, external compression).11 Lymphedema is an incurable, progressive dysfunction of the draining lymphatics that can be caused by inherited abnormalities in the lymphatic system (primary lymphedema) but is more often caused by acquired damage (secondary lymphedema). Lymphedema frequently occurs after cancer treatment, developing usually within 18 months, but sometimes even five or more years after, cancer treatment. With edema progressing Wi n t e r 2 0 2 0

slowly, a definite diagnosis of early-stage lymphedema is difficult to achieve.13 The condition, once in its later stages, results in swollen limbs, often paired with pain, fibrosis, recurrent infections, arthritis, and depression, complicating the patient’s day-to-day functioning and sometimes prohibiting their ability to work.14 Lymphatic vessels are generally difficult to visualize because they contain few cells, carrying mainly clear lymph fluid. This makes them difficult to locate and cannulate for angiographic techniques, so most visualization techniques rely on the natural ability of lymphatic vessels to absorb tracers injected into the tissue space. The tracer is then transported and concentrated into the proximal network, allowing detection by a variety of imaging modalities.9

been shown to be particularly useful for this.

Lymphoscintigraphy can see deep vessels, the “collectors,” while MRL can see cisterna chyli, which is of great interest in chylothorax (chest swelling). In the past, lymphoscintigraphy was the gold standard for lymphatic imaging despite very low-resolution images and limited usefulness. Many physicians, in fact, may only be familiar with this “old-school” method. Of note, the contrast agent traditionally used for lymphoscintigraphy is now largely unavailable in the US and Korea, and replacements may yield less-than-optimal images.15 Some applications of Indocyanine Green (ICG) Lymphography can show lymph nodes and mostly superficial vessels. This imaging technique is particularly used by microsurgeons, whose concern is which shallow vessels to work with rather than the deep vessels.

Lymphatic imaging technologies Table 1 (included in the online references) summarizes some of the modalities that can be used to image lymphatics and aid in diagnosis, each with their own advantages and limitations.

Although this paper highlights their individual applications, several imaging methods might optimally be used together to provide the most complete picture of lymphatic dysfunction.

Reliability The most reliable modalities for imaging lymphatics (i.e., those most likely to provide an accurate diagnosis consistently) are lymphoscintigraphy, ICG lymphography, and any modalities when they can show backflow.

MRL and photoacoustic imaging can deliver high-resolution lymphatic vessel anatomy images, as long as veins are avoided. NIRFLI can show whether lymph is flowing and pumping, and lymphoscintigraphy can take snapshots at different times in order to indirectly show you if lymph is moving (at least through the large vessels).

Editor’s Note: Because of space restrictions, we encourage readers to review the comprehensive Table 1 moved to the online references (www. lymphedemapathways.com).

Canadian readers should note that not all these techniques are available in Canada and it will depend on the province where they live, whether they are covered or not under their applicable Provincial Health Plan.

Uses, advantages, and disadvantages of different modalities The most common purpose of lymphatic imaging across all modalities is to determine cancer patient susceptibility to postsurgical lymphatic complications. Near-infrared lymphatic fluorescence imaging (NIRF-LI) and magnetic resonance lymphography (MRL) have Wi n t e r 2 0 2 0

Availability Computerized tomography (CT) scans which can pick up cancerous lymph nodes (which start to accumulate calcium), and magnetic resonance imaging (MRI), which can pick up changes in water content in tissues, are easy to perform and widely available in the USA, but neither can provide a diagnosis of lymphedema based on their images alone.

Recently, magnetic resonance imaging (MRI) without contrast was used to show water and fat accumulation in lymphedematous arms.16 Surprisingly, muscle layers were found to accumulate fluid; previously, only fluid-filled skin and subdermal fat were known features of lymphedema.

NIRF-LI and photoacoustics, the two most

Several imaging methods might optimally be used together to provide the most complete picture of lymphatic dysfunction. promising modalities for the objective diagnosis of lymphedema, are not yet commercially available. Since most general physicians (GPs) and other primary care providers do not have any version of NIRF-LI or photoacoustics, and may not be aware of these modalities, patients in the USA, seeking a lymphedema diagnosis typically only get lymphoscintigraphy as a firstline diagnostic tool. Lymphatic microsurgeons, who use ICG lymphography routinely to identify amenable vessels before surgery, see only established lymphedema patients, not those who are seeking a diagnosis. NIRF-LI is currently available only to volunteers in NIRF-LI research studies. ICG lymphography, NIRF-LI, and photoacoustics are not routinely used by practitioners trying to make an initial lymphedema diagnosis. In short, the tools that provide the most reliable diagnosis available are the hardest to come by, making it much less likely that a patient will receive a proper diagnosis through a lymphatic imaging process.

Of primary importance for cancer patients are baseline limb measurements, preferably before neoadjuvant chemo, to establish a benchmark for swelling detection. Unfortunately, many cancer treatment providers do not take said measurements or even perform posttreatment surveillance to detect lymphedema, which would enable patients who test positive for lymphedema to receive early treatment.

Non-imaging methods for lymphedema detection Perometry, Bioimpedance Spectroscopy (BIS), and Tissue Dielectric Constant (TDC) are non-imaging methods for the detection and diagnosis of lymphedema. Perometry shoots near-infrared beams onto the skin, measuring bounce-back and absorption to calculate limb volume as an alternative to tape measurements. Perometry detects swelling, is easy to perform, however the L y m p h e d e m a p a t h w a y s . c a 11

Editor’s Note: Many experienced clinicians still deem the traditional circumferential measurement method to be the most accurate hands-on clinical assessment tool.

Summary Lymphoscintigraphy is commonly prescribed by physicians in the USA needing an initial lymphedema diagnosis. When lymphoscintigraphy does not provide a clear answer, perhaps because shallow, not deep, lymphatic vessels are primarily affected, then ICG lymphography or MRL may be used, with the caveat that MRL may unintentionally show veins. Photoacoustic imaging, using ICG as contrast, can provide high-resolution vessel images, but cannot tell physicians if lymph is pumping, may unintentionally show veins, and is still investigational. A near-commercialized version of ICG lymphography, NIRF-LI, can show near real-time pumping, as well as shallow lymphatic vessel anatomy. Of note, very little longitudinal lymphatic imaging has been done to show the progression of lymphedema, with the exception of a few recent NIRF-LI studies.

The future Recognizing that patients with lymphatic disorders are undercounted, poorly served, and frustrated by the difficulty in receiving an accu-

Photoacoustic image.

rate diagnosis and finding adequate treatment, in 2018, the Lymphatic Education & Research Network (LE&RN) began developing standards for Centers of Excellence in the Diagnosis and Treatment of lymphatic disorders. LE&RN Centers of Excellence (COE) are a network of multidisciplinary clinical care and service centers spanning the world. The Centers will provide clinical and social services, professional and lay education in the geographic areas they serve, and are involved in lymphatic disorders clinical research.19 Lymphatic imaging capability is one of the considered criteria. (Table 2 is included in the online references). LP A full set of references can be found at www.lymphedemapathways.ca

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

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Image: Matsumoto – Scientific Reports

machine itself is expensive. Measurement accuracy can depend on user skill unless one is using LymphaTech, an at-home scanning system, which is fast, easy to use, and more accessible to patients.

BIS involves passing a low-strength electrical current through the affected area and measuring how the flow of the current is slowed by the fluid in the body. BIS measurements are not available everywhere.17 TDC measurements characterize localized tissue water in arms of women with and without breast cancer treatment-related lymphedema.18 BIS and TDC have been found to have a potential for early diagnosis, are widely used, and can be an important part of the diagnosis toolbox, though they have their limitations.17

Clinical Perspective

Therapy for lipedema

Incorporating new clinical guidelines

By Guenter Klose

L

ipedema, which mainly affects women, is much more complex than its defining characteristics suggest. According to the European Lipedema Consensus Group, the two main criteria for the diagnosis of lipedema are: disproportionate fat accumulation in the legs (and sometimes the arms) and subjective complaints such as pain, heaviness, and tenderness in the area of the affected tissue.1 However, lipedema is often complicated by a wide range of other physical conditions and emotional and psychological suffering. These complexities can lead to misdiagnosis or treatments that fail to address underlying issues.

Even the root definition of the word lipedema has led to misunderstandings of the condition.2,3 The term “lipedema” was first coined by E.V. Allen and E. A. Hines in 1940.

“Lipo” means “relating to fat” and “edema/ oedema” means “swelling due to the accumulation of fluid.” However, pure lipedema does not consist of fluid edema.3 Nevertheless, lipedema may be combined with other causes of swelling such as orthostatic edema (fluid accumulation in the lower extremities from being in an upright position) or lymphedema (the accumulation of fluid due to lymphatic failure).3 Recognizing the complex nature of lipedema, many articles and guidelines have been published that promote a multimodal

approach for the treatment and management of lipedema, e.g. the Dutch Guidelines 2016 and the United Kingdom Guidelines 2017. Such an approach calls for treatment not only of the physical symptoms but also the psychological issues that are often associated with the condition. However, given how the predominant medical model in North America focuses solely on physical manifestations, implementation of such a multifaceted approach can be challenging. Development of a treatment plan often falls to a lymphedema therapist.

The following considerations are based on new understandings about lipedema published over the last three years in a series of articles entitled Lipedema – Myths and Facts, Parts 1-5, by T. Bertsch and G. Erbacher, experts at the Foeldi Clinic in Germany that specializes in treating lymphological disorders.1,3-6 Therapists are encouraged to incorporate these new findings into their clinical practice; patients can use them to guide their self-care.

Assessment Though the number of lymphedema therapists is growing, there are still few physicians in North America who specialize in lymphedema and/or lipedema. This can make it difficult for patients to receive an accurate diagnosis.

Non-expert physicians may assign the diagnosis without collecting information critical to successful treatment of the condition. It is

Guenter Klose, MLD/CDT Certified Instructor was educated at the renowned Földi Clinic in Germany and was involved in establishing the first lymphedema treatment centers and certification courses in the United States. His company, Klose Training, provides the highest-quality lymphedema therapy education to many hundreds of therapists in the U.S. and internationally. His most recent innovation is the development of advanced, online courses. www.klosetraining.com

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therefore essential that the treating therapist conduct a comprehensive evaluation to establish the patient’s past medical history and to assess their current complaints.

But can a thorough physical evaluation determine the real source of the patient’s suffering?

Lipedema is often associated with emotional and psychological distress.1,4 Patients often believe this distress is caused by the physical pain and the embarrassment they feel because of the disproportionate appearance of their legs. However, data collected by the Foeldi Clinic has revealed that in many cases, mental health issues were present before the onset of symptoms typically associated with lipedema and that these issues have an influence on the patient’s perception of pain.7 Since mental health issues often precede the manifestation of physical issues, simply treating the physical symptoms, as is typical of traditional lipedema therapy, may not get at the root cause of the patient’s suffering.

A referral to a mental health professional will likely prove beneficial.

An additional challenge in diagnosing and treating lipedema is that patients often have comorbidities such as obesity and subsequent obesity-associated lymphedema.

Because there is significant overlap between these conditions, clear differentiation may be impossible, even for very experienced professionals. In cases of severe obesity, a consult with a bariatric specialist may prove helpful.1,5 The following specific guidelines pertain only to the treatment of PURE lipedema, which is fairly rare. More often than not, lipedema is associated with various comorbidities.

L y m p h e d e m a p a t h w a y s . c a 13

activity program that builds strength, flexibility, balance, and general endurance is highly recommended.1,2,12 Physiotherapists play a key role in tailoring an exercise program to each individual’s needs. As with anyone, patients with lipedema are more likely to maintain a program they find interesting and fun. Patients will likely lose motivation if they are mandated an exercise routine with a set number of repetitions. Aquatic therapy or simply movement in water is very beneficial for patients with lipedema.

FIGURE 1

Main pillars of the new interdisciplinary therapeutic concept. European Lipedema Forum

Therapy goals The main goals of treatment should be to reduce soft-tissue pain and address the psychological vulnerability of the patient with lipedema.1 Physiotherapists often fail to address the latter because they are trained to focus on the tangible physical and subjective complaints (discomfort and pain) of their patients. Digging deeper to investigate what the patient with lipedema is really suffering from would seem to be out of the scope of practice for therapists entrusted to treat the lipedema. But if a key component of the patient’s suffering is due to severe mental stress, depression, and/or poor body image and self-acceptance, limiting treatment of lipedema to physical manifestations is unlikely to be effective in the long term. Although there is no validated lipedema-specific questionnaire available to date, there are a number of other validated tools available to therapists8-11 that can help them assess whether their patients with lipedema need psychotherapy or psychosocial services. If a need is identified, the therapist should then make the appropriate referral.

Therapists who are treating lipedema are typically trained more specifically in lymphedema therapy. While certain techniques used for treating lymphedema are beneficial for treating the physical symptoms of lipedema, it is imperative that therapists review the latest literature pertaining to lipedema so they understand what lipedema is, and, perhaps more importantly, what it isn’t.1 Armed with this new knowledge, therapists will be able to correct any misperceptions their patients have.

As the therapist explores the patient’s own subjective beliefs about lipedema, it is critical that the therapist identify the patient’s precise 14 L y m p h e d e m a p a t h w a y s . c a

expectations and treatment goals and bring these into alignment with what is possible.1 Any comorbidities must also be addressed, as appropriate.

Therapy A multimodal approach is critical to the successful treatment of lipedema. The following information touches on some key points of the new therapeutic concept recommended by the European Lipedema Forum, as illustrated in Figure 1.1 Physio and movement therapy Manual Lymph Drainage (MLD) Since lipedema is not a fluid edema,1-3 MLD will not reduce the limb volume but can help to reduce the subjective complaints of the patient. In my own work with patients with lipedema, I have found that the pressure sensitivity of the affected tissues is, quite often, markedly reduced after a relatively small number of treatments, i.e. 6-8 sessions.

Although the amount of pressure exerted during MLD must be adjusted to the patient’s tolerance, a firmer stroke than is often used by practitioners may offer better results.

MLD improves tissue health overall but the soothing, human touch provided by MLD may have additional benefits for a patient with deeply rooted psychological issues as is common with patients with lipedema.

Movement therapy The benefits of exercise are universally recognized but patients with lipedema may find it difficult to engage in a regular exercise routine because of their size and general deconditioning caused by perpetual inactivity. A graded

Compression therapy Compression therapy should become part of the daily routine for patients with lipedema.1 Although there are no scientific studies to date on the effects of compression on pure lipedema, studies examining the efficacy of compression therapy for other conditions have shown that compression reduces inflammation of the tissues, improves microcirculation, and has a positive effect on the hypoxia factor. Hypoxia is insufficient oxygenation of the tissues; it can contribute to the pain in lipedema.1 Finding a suitable pair of compression tights, comfortable leggings, or a suitable combination of garments to ease with donning and doffing is possible in nearly every case.

Depending on the clinical picture, custom-made flat-knit garments are preferred, especially in those patients with a combination of lipedema, lymphedema, and obesity.1,12 However, not all patients with lipedema require custom garments. Many women with lipedema prefer a textured material, which can provide a micromassage on the skin and relieve discomfort (see photo on page 15).

Psychosocial therapy As mentioned before, many patients with lipedema experience severe mental stress1,4 which is particularly relevant because mental health issues can exacerbate pain perception.7 Many patients with lipedema have difficulty accepting their own body, especially the shape of their legs, largely because of the prevailing beauty ideal that is constantly promoted in today’s media.13 It is also notable that an analysis of psychological assessments at the Foeldi Clinic found that a significantly higher number of patients with lipedema reported physical or sexual abuse compared to the general population.1 Details about an effective therapeutic approach that includes Wi n t e r 2 0 2 0

empathy, education, psychotherapy, and the use of self-help groups is outlined in Part 5 of Lipedema – Myths and Facts.1 Weight management A high percentage of people in modern societies, including people with lipedema, are overweight or obese. Nutrition education and weight management are important so it is unfortunate that most publications that deal with lipedema state that diet and exercise have no effect on lipedema. This clearly sends out the wrong message to patients and healthcare professionals. It is quite likely that patients with lipedema who are overweight will always have disproportionate fat distribution, even after an appreciable amount of weight loss. However, there are recognizable health benefits to be gained by improving fitness and reducing weight (e.g. pain may be reduced).

Short-term diets must be avoided as they almost always fail in the long term and often result in a yo-yo effect.14-17 It is important to educate patients with lipedema, especially those with additional visceral obesity, about the inflammatory and anti-inflammatory effects of various foods because dietary choices can help prevent hyper-insulinemia and insulin resistance. However, it is beyond the scope of this article to give specific dietary advice.

Liposuction There is a common misperception that liposuction can eliminate lipedema and along with it, a

patient’s emotional and psychological burdens.

Although liposuction can reduce the size of a limb, there are grave risks to the procedure and deep-seated psychological issues cannot be sucked out with the fat. According to the European Lipedema Forum, liposuction should only be considered for patients with considerable functional disabilities whose symptoms persist despite 12 months of comprehensive, conservative therapy, whose weight has been stable for at least 12 months, and for whom a preoperative psychological assessment has been completed. Liposuction is generally not recommended for patients with a BMI >35 who have central obesity.1,6 Patients contemplating liposuction are encouraged to scrutinize the qualifications and track record of any surgeon they are considering for the procedure.

Self-management The Chronic Care Model (CCM) advises that patients should be given a leading role in their treatment.2,19 Together, the patient and therapist need to formulate a plan of care that includes reasonable and attainable goals. The therapist should clearly explain the condition, its treatment, and impactful behaviors to the patient. The importance and power of selfmanagement must be emphasized. Motivating the patient to take an active role in their care program will foster compliance and positive long-term results. As therapists, we need to guard against mandating certain actions, rather than collaborating with the patient,

Although liposuction can reduce the size of a limb, there are grave risks to the procedure and deep-seated psychological issues cannot be sucked out with the fat. as inflexibility can sabotage the desired goal.

The more we show empathy and support, and the less we (knowingly or unconsciously) comment on behaviors that produce guilt or shame, the more the patient will engage.1 Final comments The recent initiatives of the European Lipedema Forum, spearheaded by T. Bertsch and G. Erbacher, provide an invaluable contribution to the understanding of the clinical presentation and treatment of lipedema. Part 5 of the series Lipedema – Myths and Facts is a must-read for every healthcare professional involved in assessing and treating lipedema.

It would also be beneficial to create a new term that better describes the condition currently known as lipedema because the condition has very little to do with “edema.” Rather, the condition is a painful, disproportional distribution of fat tissue. Having an accurate term for a medical problem that has long been misunderstood and misdiagnosed and is frequently treated incorrectly could precipitate a paradigm shift in the recognition and treatment of this condition. LP

Photo: G. Klose

The International Lipedema Consensus Document has now been published as a supplement of the Journal of Wound Care. You can find this document as well as the full set of references at www.lymphedemapathways.ca

Female patient with lipedema in remission. Pain and pressure sensitivity of the tissues are managed by weight control, healthy nutrition, regular physical activity and textured compression leggings.

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Editor’s Note: Readers are encouraged to refer back to the Fall 2020 issue of Pathways for an interesting interview with Dr. Bertsch about the paradigm shift in thinking about lipedema.

L y m p h e d e m a p a t h w a y s . c a 15

Personal Perspective

Putting the “self” into self MLD Yoga basics enhance Manual Lymphatic Drainage self management time

By Lisa McKhann

While this article refers to doing MLD by hand, it applies equally well to those who use a pneumatic pump.

T

hose of us with lymphedema know that I invite you to try any of these practices for doing daily self “Manual Lymph Drainage” a few days or a week. Sense and feel what it’s (MLD) can be just as tedious, mechanical like to center self MLD within a more focused and bothersome as it sounds. We’re taught yet relaxed mind, body, and spirit. to perform 5–8 oval-shaped rotations per spot, not too hard, and slowly. (“Sun-rise…

A little privacy please: do not disturb sun-set…,” my physiotherapist droned, Granted, sometimes we just have to when teaching me how to care get on with self MLD amid life’s for my leg). We start with commotion. Sometimes, some deep abdominal though, there’s time breathing before and space available launching into our for privacy, if only custom sequence of we claim it. Close hand placements and the door. Hang or magic circles to move communicate the ‘do not disturb’ lymph from wherever sign. Turn off your it’s bogged down. phone. I like to pull down Through recent yoga the window shades. A teacher training, I found a private space, free from new way to practice my interruption, is a beautiful morning self MLD that Seen here on a portage in the Quetico Provincial Park, Lisa loves start to tuning in through transforms it from an to camp and is grateful that she mindfulness to your self I-have-to chore into an can manage her lymphedema MLD, and through self I-get-to treat. It doesn’t even in the wilderness.

MLD to your mind.3 take any longer or require Beyond privacy, ask yourself what little any gear. You don’t have to know a thing about yoga to borrow these simple tools. thing might help you feel more comfortable In fact, you already know the basics through or at ease? For instance, I like warmth during MLD—deep breathing, rhythmic counting self MLD, so in winter I pre-warm my bed with and gentleness. a heated mattress pad. Tend to yourself. Be Lisa McKhann was diagnosed with lymphedema in her leg eight years after surgeries for ovarian cancer. She is a certified Soma Yoga teacher (200 level) through Yoga North International Soma Yoga Institute and lives in Duluth, Minnesota.

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

kind. Do you like an eye shade or the smell of incense, maybe some ambient music or nature sounds? Any of these might help you come into the present moment, but none are necessary.

Soft face and eyes Once situated for a self MLD session, we all usually attend first to the terminus, near our collarbones. Wherever you start, begin by noticing your breathing and relaxing your face. Feel your brow smooth, your cheeks droop, your jaw slacken, and your tongue grow heavy. Let your lips lightly close, your eyelids lower, and your gaze soften. Already, in softening the muscles of your face, you are inviting quiet to your mind.

Yoga teaches the use of a soft gaze or closed eyes—which ever feels most comfortable to you—as a basic technique. Without external objects to see, we ease ourself further inward.

Your mind will still ricochet about, plenty!

Just notice the thoughts floating in like soap bubbles, and let them drift off or pop.

Gentle deep breath Deep abdominal or diaphragmatic breathing is the natural breath of babies. This belly breath activates the parasympathetic nervous system, our mode of rest and digest. This is when we recover from stress and fully nourish ourselves.

Unfortunately, shallow chest breathing—meant for fight, flight or freeze times—becomes habit for many, including me. We want a restful system for self MLD time—and for most times!3 By bringing sustained deep breathing throughout your self MLD session, you: activate the deep lymph channels of your core, calm Wi n t e r 2 0 2 0

You don’t have to know a thing about yoga to borrow these simple tools.

In fact, you already know the basics through MLD. your nervous system, and provide your mind with a focus point. Deep breathing in yoga and lymphedema treatment doesn’t mean huffing and puffing. In fact, it’s usually almost silent.

Diaphragmatic or abdominal breathing: To check your breathing, spread the fingers of one hand on your belly between your navel and your ribcage. Place the other hand on your chest.

With abdominal breathing, your lower hand will rise and fall slightly with your belly, while the hand on your chest remains relatively still.

Simply breathe through your nose with your mouth gently closed. You may notice your breath at your nostrils—cool coming in, warmer going out—or in your belly, ribs, or elsewhere.

And, yes, sometimes noticing your breath makes it impossible to breathe naturally.

Let it go for awhile.

Even breath: A simple and safe breath practice is to even the length of your inhale and your exhale. First, while counting your MLD rotations, observe your exhales and inhales. Then, see if you can nudge them into balance: a couple circles per inhalation, balanced by a couple circles per exhalation, or whatever your body says. Listen. Tune in.

Slower breath: After finding an easy, even breath, you can experiment with slowing it down a bit. Without holding, explore finding a slow, even flow in and a slow, even flow out. Each slower breath is deeper, fuller, more effective, yet effortless. Enjoy the calm and the nourishment you are giving yourself.

Mantra—say what?

Exploring words or sounds—mantras—may be over the top for you or the icing on the cake.

Every spiritual path in the world uses repeated

sounds or words as prayer, chant or invocation.

Mantra might elevate or deepen your time, your practice. It’s another tool to still your restless mind, this time with waves of internal sound and contemplation.

Yoga has taught mantras for thousands of years, which come to us in Sanskrit. ‘So ham’ is a good mantra for beginners. It means ‘I am’.

This mantra is great for “getting grounded in self-love.”1 In yoga, a mantra is repeated silently to yourself. Explore a mantra over the weeks to see where it takes you.

Inhale: “Sooooooo”/Exhale “Haaaamm” Inhale: “Freeeeee”/Exhale “Flowww” At the end of your self MLD session, pause.

Be. Relax there for one minute. Let your eyes slowly take in the room. Wiggle or stretch.

Kindly re-enter the day and place around you.

Kindly carry the benefits of your practice with you. Be well. Namaste. LP A full set of references can be found at www.lymphedemapathways.ca

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The anatomical shape of fingers and thumb, along with the enclosure of the thumb webbing ensure a precise and comfortable fit and ease of donning.

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It is designed not to restrict the thumb movement in any way.

The knitted length of the toes ensures additional stability and easy donning.

The 3D comfort zone in the sensitive area between the big toe and the ball of the foot has an anatomical shape. This allows a precise fit and prevents the fabric from creasing, protecting the skin from irritation and providing a high wearing comfort. Standard sizes S - 2XL.

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Therapist Perspective

Hints and tips

Compression garments for lymphedema

By Mona Al Onazi and Rachel Wang

U

sing a compression garment is essential in helping you manage your lymphedema on a daily basis.1 Most of you will have been told to wear your garment during waking hours, from the time you get up until bedtime, or a minimum of 12 hours a day.2 This recommendation is supported by research that has shown that adherence to a well-fitted compression garment can help reduce and/or control swelling.3 We recently completed a study that showed that many women with breast cancer-related lymphedema did not wear their daytime compression garment every day, all day.4 We were surprised, so we conducted a second study involving a survey and focus group sessions to find out why.5 In the second study, women reported many reasons for not wearing their garment.6 Two of the main reasons included discomfort and difficulty with function.7 In our quest to find some solutions to these issues, we explored the hints and tips compiled from previous Pathways articles, and also reached out to patients and clinicians for their thoughts and ideas. In this article, we share some suggestions to help you manage your lymphedema.

Discomfort An ill-fitting or poorly applied compression garment can cause discomfort. Not surprisingly, many women reported that discomfort was one of the main reasons for removing their compression garment. A number of issues were reported including poor fit of the garment, tension or tightness in the limb that increased over the day, and discomfort that was due to heat or humid weather. Four regions of discomfort were commonly reported including at the hand, wrist, elbow and upper arm (Table 1).

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TABLE 1

Discomfort Poor fit of the garment Fit at the hand (e.g., irritation of thumb and web spaces)

Hints and tips •After every wash, place a thick pen or dowel in, (e.g. the finger holes to stretch out the material.

• Ask your fitter if a seamless glove is appropriate for your lymphedema.

Fit at the wrist •Try alternating the glove above and below your (e.g., overlap of compression) compression garment at the wrist to see if one

method improves tolerance.

• Be refitted so that the compression level is not excessive at the wrist.

Fit at the elbow •Talk to your fitter and/or therapist regarding the (e.g., nerve compression use of inserts, or different types of garments with and chafing in elbow crease) specialized elbow stitching, or liners.

• Try applying talc-free powder or cornstarch at the elbow crease to reduce friction.

Fit at the uppermost •If the band is too tight, discuss with your therapist aspect of the arm or fitter options for a garment with a different (e.g., band too tight, shape or method to keep the garment in place. top of sleeve sliding down, •If the top of the sleeve is sliding down, try using and blistering due to a body adhesive product. If the garment is sliding silicon band) a lot, you may need to check the fit or style of

the garment.

• If there is blistering due to the silicon band this may indicate an allergy or skin sensitivity. Sometimes turning the sleeve inside out or changing to a garment without a silicone top can solve this.

• If you have problems with the fit of your garment, it is best to address issues right away. Ask your therapist or fitter about other options to increase comfort such as a custom-made garment.

Poor tolerance Hints and tips to compression •Pace your activities through the day to ensure An increased feeling of that you can rest and elevate your limb. tension/tightness in the limb Practicing deep breathing exercises along causing removal of the with elevation may be helpful. garment earlier in the day.

• Sometimes the material of the garment (too elastic) may cause the feeling of tension in the limb.

Discuss options with your therapist or fitter about switching to a firmer, less elastic material.

• Replacing your compression garment regularly is important to ensure the correct level of compression is being applied to your limb.

Heat and humidity/ weather Heat-related discomfort and increased heat due to hot flashes or from activity and exercise.

Hints and tips •Try wetting your compression garment with a spray bottle, or putting a frozen gel pack or frozen peas on your limb (not more than 15 minutes). Place your garment in the freezer for about 10 minutes before wearing it to keep your body temperature down and your limb cool.

• Try, if possible, to complete your activities (e.g., gardening) in the shade or in the early or late hours of the day when it is cooler outside.

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TABLE 2

Function Hand function Using a glove/gauntlet caused difficulty with hand function (e.g., manipulating objects, meal preparation, and writing).

Hints and tips • Don a large kitchen rubber glove (or other waterproof plastic glove) that will go over your compression glove.

• Wear an old compression glove that you can get dirty or wet while washing dishes or doing other household chores.

• Try layering a thinner glove under the gauntlet to allow for more finger flexibility and function during the day (e.g., typing on the keyboard).

Hygiene Keeping the garment clean was difficult especially when using a glove or gauntlet.

Hints and tips • Daily washing of your compression garments is important to avoid the buildup of residue from dirt, lotions, and sweating.

• Use old garments for dirty work such as gardening.

• Keep a “going out” glove that looks clean and new.

Difficulty with function Most of the women reported that wearing the compression garment impacted their ability to use their hands for daily roles and activities.

The issues related to this barrier included hand function and hygiene (Table 2).

Other strategies to help control your lymphedema Some of the women interviewed reported other ideas to help self-manage their lymphedema. n Nighttime compression: Many women

find that bandaging or use of a night garment, on a regular or as needed basis, are an effective strategy to keep the lymphedema in control. n Exercise: Many women reported

that exercise was helpful for their lymphedema. Wearing a compression garment during exercise and activities can help your muscles to more easily move the fluid out of the limb. n Avoiding salt foods and alcohol:

Some women have found that ‘eating out’ caused more swelling the next day.

Their advice included watching intake of salty foods and alcohol. n Watch for triggers: Be aware of triggers

that make your lymphedema worse (e.g., Driving long distances was a common trigger for increased swelling among patients. Exercise using a squeeze ball and moving your arm

can help with that.) When you can’t avoid those triggers, plan in advance (e.g. use night bandaging in the week before and after a long road trip). LP A full set of references can be found at www.lymphedemapathways.ca

We would like to thank and acknowledge the help and input we have received from women with lymphedema (Iris, Ans, Jane, Val, Diane, Jean, Janet, and Mary Anne), and physiotherapist and occupational therapists at the Cross Cancer Institute in Edmonton (Rita Wannechko-Koenig), Central Alberta Cancer Centre in Red Deer (Kelsey Kenway), and Tom Baker Cancer Centre in Calgary (Tracy Smith and Lori Radke).

Mona M. Al Onazi is a physiotherapist, certified lymphedema therapist, and doctoral candidate in the Faculty Rehabilitation Medicine at the University of Alberta.

Rachel Wang is a practicum student at the Cancer Rehabilitation Clinic in the Department of Physical Therapy, University of Alberta and pursuing her Bachelors in Kinesiology with a major in adapted physical activity.

More Helpful Suggestions...

Talk about how you feel This is a time to stay connected with the people that you love. Set up a time to call a friend or family member every week to catch up and talk about what you are feeling.

It’s also a great time to give each other any new book or TV recommendations, as the days get shorter!

Keep moving The cold weather does not mean you should be discouraged from moving as much as you can. Try some yoga with a guided YouTube video, or set aside space 20 L y m p h e d e m a p a t h w a y s . c a

in your living room to do some simple exercises and stretching. You can refer to recent Pathways articles for suggested arm exercises (Spring 2020) and leg exercises (Fall 2020).

Listen to a podcast During the colder months when there are fewer opportunities to connect with people outside, why not try listening to an informative podcast? One suggestion is called ‘The Lymphedema Podcast,’ hosted

by a lymphedema therapist, which can be found on the website: www. lymphedemapodcast.com You are in control In my experience, people with lymphedema who have the best outcomes, in terms of circumference, pain and function—are those patients who concentrate on overall health (physical, mental and social) in what they can control in their lives.

LP

Jennifer St. Michael, PT, CDT Renfrew, Ontario Wi n t e r 2 0 2 0

Research Advances

Did You Know?

The burden of lymphedemarelated hospitalizations

This study aimed to describe hospitalizations due to lymphedema and identify factors associated with poor outcomes. Design: We performed a retrospective analysis of the Healthcare Cost and Utilization Project National inpatient sample for lymphedemarelated hospitalizations from 2012 to 2017.

All adults admitted with a primary diagnosis of lymphedema or a primary diagnosis of extremity cellulitis and secondary diagnosis of lymphedema were included. Results: Between 2012 and 2017, there were an estimated 165,055 lymphedema admissions in the United States. Most hospitalizations were for cellulitis (92%), lower extremity disease (88%), and were admitted through the emergency room (77%). Median length of stay was 3.61 days and inpatient mortality was 0.03%. Conclusion: Although mortality is low, lymphedema-related hospitalizations are a significant burden to the US healthcare system. Counseling older lymphedema patients with comorbidities on early symptoms and signs of infection and prompt treatment of same may reduce mortality.

Source: Surg Oncol. 2020 Sep 09;35:249-253 PMID: 32932222

Lymphedema: a review of fundamental concepts

Lymphedema has historically been underrated in clinical practice, education, and scholarship to the detriment of many patients with this chronic, debilitating condition. For this review, we conducted a literature search using PubMed and EMBASE and summarized the

evidence related to the fundamental concepts of lymphedema. This article aims to raise awareness of this serious condition and outline and review the fundamental concepts of lymphedema for physician and other clinicians.

Source: Mayo Clin Proc. 2020 Aug 20;: PMID: 32829905

Body mass index and lymphedema morbidity

Obesity is a risk factor for the development of secondary lymphedema after axillary lymphadenectomy and radiation therapy.

The purpose of this study was to determine whether obesity influences the morbidity of lymphedema in patients who have the condition. Methods: Two cohorts of patients were compared: group 1, normal weight (body mass index ≤25 kg/m); and group 2, obese (body mass index ≥30 kg/m). Outcome variables were infection, hospitalization, and degree of limb overgrowth. Results: Sixty-seven patients were included. Disease duration did not differ between groups. Group 2 was more likely to have an infection (59%), hospitalization (47%), and moderate or severe overgrowth (79%), compared to group 1 (18, 6, and 40%, respectively). Multivariable logistic regression showed that obesity was an independent risk factor for infection, hospitalization, and moderate to severe limb overgrowth.

Conclusions: Obesity negatively affects patients with established lymphedema. Obese individuals are more likely to have infections, hospitalizations, and larger extremities compared to subjects with a normal body mass index. Patients with lymphedema should be

counseled about the negative effects of obesity on their condition.

Source: Plast Reconstr Surg. 2020 Aug;146(2):402-407 PMID: 32740596

Discovery of a novel gene in primary lymphedema

Scientists have identified a novel gene responsible for primary lymphedema along with mutations that alter the function of a protein that is known to play a role in vascularization. They also found how these mutations result in loss of the protein’s normal function. Samples were collected from almost 900 patients (and family members) suffering from primary lymphedema. By using wholeexome sequencing, the team was able to discover mutations in a gene called ANGPT2 in five families with occurrence of lymphedema.

ANGPT2 had previously been shown to influence lymphatic development in mice, but this is the first time that mutations in this gene are found to cause a disease in human being. Whether they induce development of too few or too many lymphatic vessels, these mutations result in primary lymphedema in patients. Until now, 28 genes have been found to cause primary lymphedema and/ or predispose to the secondary form, but these account only for less than a third of the patients, each gene explaining a defined percentage of cases. This important discovery, is essential for the proper diagnosis of patients suffering from primary lymphedema, and opens a novel pathway for developing treatments. LP Source: Leppänen and Brouillard et al, Science Translational Medicine 2020

Thank you!

To all of the family caregivers, front-line and essential workers and health professionals who are working hard to care for us, feed us canadianabilities.org and keep us all safe.

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Education Education

Canadian and International Events May 14-16, 2021 Gold Coast, Australia 2021 Australasian Lymphology Association Symposium: Join us for the 2021 ALA Symposium, where together we will be exploring new pathways. n www.lymphoedema.org.au Nov 18-20, 2021 Copenhagen, Denmark 10th International Lymphoedema Framework Conference: Highlighting innovative ideas and research in lymphedema management. n www.lympho.org

Letters to the Editor... __ ______ ______ __________ ______ __________ ______ __________ ______ ____ ______ __________ ______ __ __ __________ __ __ __ __________ ______ __ ______ __________ __ __ __________ __ __________ __ ______ __ __________ __ __ __ __________ __________ ______ __________ ______ __ __ __ __ __________ __ __________ ____ _ ______ __________ __ __ __ __ __________ __ ____ __________ ______ __ __ __ __ __ __ __ __________ __________ _________ ______ ______ __ __ __ __ __ __ __ __ __________ __________ ______ __ __ __ __ __ __ __________ __ __________ __ ______ ______ __________ _________ __________ __________ ______ ______ __________ ______ ______ __________ __________ ______ __________ ____ __ ______ __________ __ ______ ____________ ______ __ __ __ __ __ __ __ _ __ __________ __________ ____ ______ ______ __________ __________ ______ __ ______ __________ __________ ______ __________ ______ ___ __ ______ ______ __ __ __ __ __ __ __ __ __ __ __________ __ __________ ____ ______ __________ __________ ____ ______ ____ __ __________ _______ __________ ______ ______ __________ ______ __________ ______ ______ __________ ______ __________ __ ______ __ __ __ __ __ __ _________ __ __ __________ ______ __________ ______ __ __ __ __ __ __ __ __ __________ __ __________ ______ ______ __________ __________ __________ ______ __________ _______ ______ __ ________ ______ __________ ______ __________ ______ ______ __________ __________ ______ ______ __ __ __ __ __ __________ __ __ __ __ __________ __ __ __________ __ ______ _ __ __ __ __ __ __________ __________ ____ ______ __________ _____ ______ __________ ______ ______ ___ __________ ______ ____ _______ __ _ ______ __ _ __ __ _ __ __ _________ __ ____ ______ __ _ ______ __

During the COVID-19 pandemic, in-person conferences have been cancelled or delayed until 2021. However many organizations are offering online symposiums, webinars and other virtual learning opportunities.

We suggest you check the websites of the Canadian Lymphedema Framework (www.canadalymph.ca), plus your provincial lymphedema association and the following international organizations, known for offering educational opportunities: Australasian Lymphology Association www.lymphoedema.org.au

Lymphoedema Support Network www.lymphoedema.org

International Lymphoedema Framework www.lympho.org

National Lymphedema Network www.lymphnet.org

Lymphatic Research and Education Network www.lymphaticnetwork.org

British Lymphology Society www.thebls.com

tinue at you con I just ask th mmitment co d n tion a your dedica on. I think it licati to this pub y life eaning in m rs has great m the o y n a lly to m and hopefu ion. ndit with this co y, la d in F i Mim y, NS a B e n o h a M

_______ __ ____ ____ ___ ____ ____ ____ ____ ____ ___ ____ __________ ____ _ _ _ _ _ _ _ _ _ _ _ _ __________ ____ ____ ____ __________ ____ ____ ____ _ _ _ __________ _ _ _ __________ _ _ _ _ _______ ____ ____ ____ __________ ____ ____ ____ ____ __________ ____ ____ ____ ____ __________ ____ __________ ____ ____ ____ ______________ __________ ____ ____ ____ ___ _ _ _ _ _ _ _ _ _ _ _ __________ _ ____ __ __ __ ______________ ____ ____ ____ __________ ____ _______ ____ ____ ____ ____ __________ ____ ____ ____ ____ __ _ __________ _ _ _ _ _ _ _ _ _ _ _ ____ __ __ __ __________ _____ __________ ____ ____ ____ ____ _______ __________ ____ ____ ____ ____ __________ ____ ____ ____ ____ _ _ _ _ __ _ _ _ _ _ _ __ _ _ _ __ _ _ __________ __________ _____ __ _ __ __ ___ __________ __ __ ____ ____ ____ ____ __________ ____ ____ ____ ____ __________ ____ ____ ____ ____ _ _ _ _ __________ _ _ _ _ _ _ _ _ _ _______ ____ ____ __ __ __ __________ ____ ____ ____ ____ __ __________ ____ ____ ____ ____ __________ __________ ____ ____ ____ ____ _ _ _ _ _______ _ _ _ _ _ _ _ _ __________ ____ __ __ __ ___ __________ ____ ____ ____ ____ ____ __________ ____ ____ ____ ____ __________ _______ ____ ____ ____ ____ _ _ __________ _ _ _ _ _ _ _ _ _ _ _ _ __________ ___ ___ ____ ____ __________ ____ ____ ____ ____ __________ _______ ____ ____ ____ __________ ____ ____ ____ __________ ____ ____ ____ _ _ _ __________ _ _ _ _ _ _ _ _ _______ ___ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ _ _ _ ___ ____________ ____ ____________ ____ ____________ ____ ____________ ___ ___ ____________ ____________ ____________ ____________ ____________ ____________ ____________ ______ ____________ ____________ ____________ ____________ ____________ ______ ____________ ____________ ____________ ____________ ____________ ______ ____________ ____________ ____________ ____________ ____________ _____ ____________ ____________ ____________ ____________ ____________ ______ ____________ ____________ ____________ ____________ ____________ ______ ____________ ____________ ____________ ____________ ____________ ______ ____________ ____________ ____________ ____________ ______

I enjoy Path ways.

It is one of the main places I get new information regarding lymphedem a. Thank yo u.

Lara Brierle y Regina, SK

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

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

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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.

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tion. orma f in t n en o lear excell iding een able t ema in v o r p b for r ed e I’ve ne fo ion, k you Than the first tim being do informat ge d is d t is in f le a This bout wh lt to ral know a difficu dearth of ding gene e r o o s m is lu a t c I , in da. o be Cana e seems t ofessionals . r r t e p h is l g s a as t medic nd cardiolo g n o a am rs itione pract Wallace e Janic , BC ia o t ic V r

Just keep up the good work. It is so important; I still find many peop le don’t have any idea wh at lymphedema is.

The article by Ka thleen Francis on page 9 (Fall 2020 issue) was one of the best explanations I have read so fa r!

Nicki Gustavson Camrose, AB

CLF Industry Partners

CANADIAN LYMPHEDEMA FRAMEWORK

The article on lip gives me hop edema (Pathways Fall 2019) e. I want to share this in Where/how formation. do I obtain more copies edition. I look of this fo Thank you fo rward to hearing from yo r your time. u.

Carol Abrah ams Burlington O ntario

Lymphedema Association of Manitoba Lymphedema Association of Newfoundland and Labrador Lymphedema Association of Nova Scotia Lymphedema Association of Ontario Lymphedema Association of Quebec Lymphedema Association of Saskatchewan Charitable Registration 85160 1260 RR0001

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