L'Info AQL - Summer 2018

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pour mieux vivre avec le lymphœdème

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Become a member of the LAQ, volunteer for the cause or deepen your knowledge with us. Together, we can support the people courageously living with lymphedema.

Le lymphœdème (prononcez linf-édèm) est de l’enflure et une inflammation causées par un système lymphatique traumatisé ou défectueux. Cette condition qui fait enfler les bras, les jambes, la tête, le cou, le tronc ou d’autres parties du corps peut être une conséquence des traitements contre le cancer, d’une blessure ou d’un développement anormal. À l’heure actuelle, le lymphœdème est une condition chronique incurable.

S’adapter au lymphœdème et se familiariser avec la Thérapie lymphatique décongestive et l’autogestion présentent plusieurs défis. L’Association québécoise du lymphœdème est là pour vous aider. Organisation à but non lucratif fondée en 1999, l’AQL a pour objectifs de mieux faire connaître le lymphœdème, ses causes, la réduction des risques et les traitements.

L’AQL est formée de personnes directement touchées par le lymphœdème, leurs familles, leurs amis ainsi que par des professionnels de la santé certifiés en traitement du lymphœdème et spécialement sensibilisés à cette condition.

Nos services visent à aider les patients à réduire le plus possible les impacts du lymphœdème dans leur vie. L’AQL vous offre un éventail de ressources : • Documentation en français et en anglais expliquant la réduction des risques et la gestion dans le cadre de la Thérapie lymphatique décongestive • NOUVEAU Notre livret en français Vivre avec le lymphœdème : Se prendre en charge. Un outil facilitant la prise en charge par le patient • Service téléphonique : des thérapeutes certifiés répondent à vos questions et vous orientent

• Rencontres d’éducation et d’entraide pour les patients – animées par des thérapeutes et des patients • Formations offertes aux thérapeutes souhaitant obtenir une certification reconnue • Réunions de réseautage et de formation continue pour thérapeutes accrédités • L’info AQL, notre magazine trimestriel informant nos membres de l’actualité du lymphœdème d’ici et d’ailleurs !

• Lymphedema magazine: Get Pathways in English and L’info AQL in French with your LAQ membership • Networking and continuing education meetings for certified therapists • Organized training for health professionals wishing to obtain a recognized lymphedema therapy certification • Education and support meetings for patients – led by therapists and patients

• Bottin pour identifier les thérapeutes certifiés par région

• Resource Guide to identify certified therapists by region • Telephone service: certified therapists to answer your questions and guide you • Our booklet in English – Living with lymphedema: Learning to take charge. A tool to facilitate the patient to be self-caring • Documentation in French and in English explaining the risk reduction and management in decongestive lymphatic therapy

Our services are designed to help patients reduce as much as possible the impacts of lymphedema in their lives. The LAQ offers a range of resources:

treatment and especially aware of this condition. families, friends and healthcare professionals certified in lymphedema The LAQ is formed of people directly affected by lymphedema, their its causes, risk reduction and treatments. in 1999, the LAQ’s objectives are to raise awareness about lymphedema, of Québec (LAQ) is there to help you. A non-profit organization founded phatic therapy present several challenges. The Lymphedema Association Adapting to lymphedema and becoming familiar with decongestive lymdevelopment. Currently, lymphedema is a chronic, incurable condition. body, can be a side effect of cancer treatment, an injury or abnormal creates swelling of the arms, legs, head, neck, trunk or other parts of the by a traumatized or defective lymphatic system. This condition, which Lymphedema (pronounce linf-edima) is swelling and inflammation caused

Devenez membre de l’AQL, faites du bénévolat pour la cause ou approfondissez vos connaissances avec nous. Ensemble, nous pouvons alléger la vie des personnes vivant courageusement avec le lymphœdème.

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EDITORIAL

SURGERY: managing expectations Big news!

Lymphatic surgery has come to Québec!

And with it renewed hope for many patients. Does the procedure cure lymphedema? No, because it can’t fix the broken plumbing. Instead, it makes use of what’s still functioning well. Lymph vessels that are leaking will continue to leak. Those that are hardened will remain so.

But other vessels or lymph nodes brought into service by the surgery will allow lymph fluid to circulate, relieving many of the complications of lymphedema.

SPECIAL ISSUE 2018

Pathways in French + articles from Québec and beyond L’info AQL is published four times a year by the Lymphedema Association of Québec and distributed to its members.

Editorial Committee Pamela Hodgson, Marie-Ève Letellier Rachel Pritzker Editor Anne-Marie Joncas Translation Anne-Marie Joncas, Alexandra Hadaya Élyse Martin Design graphic Catherine Boily FULL SCIENTIFIC REFERENCES CAN BE FOUND AT www.lymphedemapathways.ca

Articles from Pathways magazine, Canada’s lymphedema magazine, have been translated and reproduced with permission from the Canadian Lymphedema Framework (CLF) by the Lymphedema Association of Québec (LAQ).

Copies of this special issue of L’Info AQL can be ordered individually or in bundle at: aql@infolympho.ca or 514-979-2463 Online access to L’info AQL reserved to our members at http://en.infolympho.ca/pathwaysmagazine Pathways magazine in English is available to our members in print and at en.infolympho.ca/ pathways-magazine To reach the LAQ 514-979-2463 www.infolympho.ca aql@infolympho.ca Photo credit : CanStockPhoto, Shutterstock, 123RF AUTRES : CHUM, HMR, M. Plante, K. Schumann.

Will lymphedema become more bearable after the surgery? For some, yes; for others no. Some patients experience greater comfort, while others don’t feel any noticeable difference. And what can we do about those who have such high expectations – such as saying farewell to compression garments or the daily decongestion therapy routine? Even if the surgery is deemed successful, they still may not be completely satisfied.

So, do you go for lymphatic surgery or not? How to make an informed decision during this uncertain period of innovation and experimentation? In our opinion, there’s only one way to proceed: to be totally familiar with your own condition, gather as much information as possible from reliable sources and raise specific questions.

It is precisely in this vein that we have prepared this special edition of L’info AQL. To begin with, we interviewed microsurgery specialists in the forefront of this new field, asking them questions that go way beyond the number of incisions and the length of the operation. Then, we put together strategies and suggestions for you according to the nature of your lymphedema. Only those patients who have “controlled lymphedema” (i.e., able to self-manage through compression and other measures) are considered good candidates for surgery, in terms of a smooth convalescence and being able to adapt to their new condition. But these advices will also help those who are not good prospects for surgery and must still continue to live with lymphedema.

The introduction of lymphatic surgery in Québec is too recent for us to claim to have worked out all the surrounding issues. A new feature titled “The Operating Room” will appear in future editions of “L’info AQL”. We will be following the progress of those patients who have undergone lymphatic surgery, as well as the surgical teams, and the way in which therapists adapt to these newly-operated patients. We hope this special edition on lymphatic surgery will be informative and serve as your basis for further research and conversations with lymphedema specialists.

P.-S. : To obtain a lymphatic surgery consultation, you must be recommended by your attending physician to the surgeons of the CHUM or Hôpital Maisonneuve-Rosemont. The names of the surgeons are indicated in our report.

Printed in Québec

Anne-Marie Joncas

by Imprimerie Reflet

Editor in Chief

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April 2018

ema in Canada

Object : Surgery for lymphed Dear Editor,

rosurgical techniques a few plastic surgeons offering mic had have we on regi l tréa Mon the a millimeter in size. LymphaOver the past year or so in re vessels that can be fractions of sutu to les need tiny and s ope techniques now available. While using high power microsc e transplant are the two specific nod ph lym us logo auto and osis ticovenous anastom eness. The aim of these procedures , objective studies regarding effectiv term long it e awa we nce, adva this is an exciting nt, in patients who have early stag lymphatic therapies to some exte stive nge odeco on dep fat ence al end orm dep abn is to decrease have extensive fibrosis, marked some pitting. Those who already use they are 2 lymphedema and who still have cy are (or should be) excluded beca cien ffi have chronic venous insu who or e obes y bidl mor are who sition, unlikely to see any benefit. e surgical developments. , asking for information about thes ents pati from calls s erou num erstandable that patients are Our clinic has received ome and time-consuming, it is und bers cum e, nsiv expe be can s apie these surgeons. We understand Since conservative ther ess of gathering information from proc the in are We s. tion solu ive looking for alternat . ergo surgery in Montréal this year that a few dozen patients may und issues are: lymphedema specialist, some of the From my point of view as a medical s who have had some kind of recently qualified plastic surgeon 1. In Canada, there will be a wave hip (i.e. involving suturing ows Fell r al techniques during thei of general training in microsurgic phatic super-microsurgery, rience may or may not include lym small veins or arteries). Their expe which is even more delicate. venous anastomoses in particular) for lymphedema (and lymphatico 2. Super-microsurgery techniques ce to be successful. require significant skill and experien within lymphedema programs (ILF), surgeons should be working 3. As per international guidelines established those links apy. Surgeons may or may not have ther tic pha lym stive nge deco ide that prov . program on lymphedema patients before they initiate their surgery rigid as the lymphedema uation procedures may not be as eval and s sure mea ome outc The 4. omes are not monitored drug trials, surgical procedure outc community believes. Compared to as strictly or as objectively. specific liposuction techniques do not involve microsurgery. Very 5. There are also techniques that NOT have lymphedema icular, to lipedema patients who DO are being offered, in Germany in part pain and improving cing redu There are reports of the procedure and who are not morbidly obese. ery liposuction surg tic plas e the same as the readily availabl mobility. (This technique is NOT to remove fat.) nced lymphedema, to remove get specific liposuction for more adva can one USA the and pe Euro In 6. of the chronic inflammatory that can develop over time, as part some of the volume of abnormal fat inue with 24-hour compression However, one would need to cont state that lymphedema represents. es are available in Canada, procedure. If these specific techniqu for the rest of one’s life after this I would like to know about it. about try. I especially would like to hear pening in other parts of the coun hap is t wha t erm er-t abou ing long r hear thei to I look forward s ago to see what are ad (Europe or USA) three or more year abro ery surg a dem phe lym had patients who results. patient However, I believe any interested es are becoming available in Canada. ical surg a ing seek re befo s, It is exciting that such new techniqu conservative therapie arch, as well as maximizing their data this and ible poss as d rme should be prepared to do some rese re being as info ld not rush to have surgery, befo solution. Lymphedema patients shou gathering may take some time.

Anna Towers MD

Programme du lymphœdème, ill, Montréal (Québec) Centre universitaire de santé McG Volume 7, number Originally published in Pathways

dian Lymphedema Framework.

3, summer 2018. Copyright Cana

Reprinted with permission.

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SURGICAL REPORT LYMPHATIC SURGERY IN QUÉBEC

THE SCALPEL OF HOPE Tangible hope is rare in the lymphedema world. But, encouraging news is coming from Québec where lymphatic surgery is now being performed at two major medical centres in Montréal: the Centre hospitalier universitaire de Montréal (CHUM) and Hôpital Maisonneuve-Rosemont (HMR).

Two different procedures are used: lymphatic venous anastomosis (LVA) and lymph node transfer.

L’info AQL met with microsurgeons who have combined their knowledge and resources to add surgery to lymphedema management solutions. Our special report attempts to answer the main questions of patients considering this course of action. Four people whose operations took place from January to April 2018 agreed to share their stories with us.

INTERVIEWS CONDUCTED BY D ANNA TOWERS AND ANNE-MARIE JONCAS, LAQ R

techniques are used in operations which are difficult because they involve smaller elements. LVA is well suited to early stage 1 and 2 lymphedema. It is not indicated for already fibrosed lymphatic vessels characteristic of more advanced lymphedemas.

We use Indocyanin green imaging (ICG) before surgery to assess the condition of affected limbs. LVA has very little morbidity; this is limited to scars and infections. One might even be tempted to say that the only risk of LVA is that it might not produce any results, all without aggravating the lymphedema as it existed before surgery. The earlier it is performed, the better the chances of success.

LVA at CHUM

What motivated the CHUM to get involved in lymphatic surgery?

We wanted to create a comprehensive care package, integrating surgery, now a well-accepted option in the scientific literature. For ten years, we worked to create a coherent team. Our young residents learned the super microsurgical techniques and use of our Mitaka microscope that magnifies structures up to 80 times, allowing them to work in a submillimetric environment.

In 2018, surgeons at the CHUM will operate on 12 candidates, including the two patients who received LVA at the beginning of the year.

How does lymphatic venous drainage (or LVA) surgery work?

LVA works like “plumbing”. For this operation, very small lymphatic vessels measuring barely 0.1 to 0.2 mm are connected to tiny veins. Anastomoses are terminolateral or are connected end-to-end. Microsurgical

How does lymph node transfer (LNT) compare to LVA? Nodal transfer is a “transposition” of the nodes. Unlike LVA, which has a 20-year history, LNT is still in its infancy. The possibility exists of great morbidity, since the donor site is deprived of some of its lymph nodes.

There is a risk of lymphedema and dystrophic scarring developing at the donor site, as well as a risk of necrosis at the recipient site. Moreover, the mechanisms of LNT are not

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THE CHUM TEAM At the CHUM, Dr Michel-Alain Danino, Dr Ali Izadpanah and Dr Laurence Paek acquired the special equipment and organized multidisciplinary services that enabled them to put their microsurgical knowledge at the service of lymphedema. Together, they perform venous lymphatic drainage surgery (also called lymphatic venous anastomosis (LVA).

“AFTER SURGERY, THE PATIENT MUST KNOW HOW TO ADAPT TO HIS NEW LYMPHEDEMA.” Dr Danino breast cancer related lymphedema. In this case, breast reconstruction by abdominal flap (DIEP) with simultaneous lymph node transfer would be possible.

If necessary, lymphatic venous anastomosis surgery could be added later.

yet clarified and the sustainability of results is not sufficiently studied.

Some believe that the improvement attributed to LNT is due to the release, during the procedure, of scars, tissue or of the axillary vein, rather than the presence of transferred lymph nodes.

Few randomized studies are available to compare the results obtained by these different techniques.

What realistic expectations can patients have after surgery?

It is important to realize that lymphedema is caused by damaged lymph vessels that cannot be repaired. Lymphedema will always remain. For the leg and arm, the patient can expect less pain, heaviness and infection.

Over time, there may be a reduction in time spent in compressive garments, as well as a reduction in compression class. But almost all patients will still need to wear their compression garments for life. Significant results could be observed at three months.

We expect a 40% decrease in excess “THE PATIENT MUST BE COMPETENT IN MONITORING HIS BODY AND SKILLFUL IN SELF-MANAGEMENT STRATEGIES”.

Dr Izadpanah

volume for 80% of patients. The studies confirm for the moment that the results are maintained for 3 to 4 years, but there is a lack of data for longer periods. Lymphatic surgery for primary lymphedema potentially has an outcome similar to that of secondary lymphedema. However, in general and as reported by several centers, primary lymphedema cases have inferior surgical outcomes. This remains a “case by case” situation.

What profile are you looking for in your in surgical candidates?

Candidates should be healthy, not obese and not responding well to decongestive lymphatic therapy (DLT).

They should already have been very compliant with their treatment for a minimum of six months before surgery. DLT is very important to maintain after the surgery, since the surgery causes acute swelling that needs to be controlled by the team (physiotherapist and patient). The patient needs to remain observant in self-management. The patient has to be engaged in their own care, as we would not want to perform an operation that would lead to failure.

Is the CHUM lymphatic surgery program open to all patients?

The CHUM team will welcome all patients from Québec who are candidates for surgical treatment of lymphedema. This includes women with

What does the surgical process involve for LVA? The patient is evaluated by both the surgeon and the physiotherapy department. Before surgery, a patient with primary lymphedema will have a CT scan to check the lymph nodes.

Both those with primary and secondary lymphedema will undergo lymphoscintigraphy and ICG to assess the state of the lymphatic system. After discussing the case as a group, we work as a team of two surgeons in the operating room. One sutures, while the other facilitates the work of his colleague. LVA surgery lasts 3-5 hours under general anesthesia. This is a day surgery. The patient is discharged with an elastic tensor bandage to keep on for one week. All compression and decongestive lymphatic therapy (DLT) treatments are suspended for three weeks and the operated limb is maintained in elevation. Once the anastomoses have healed, DLT is reintroduced. Return to work takes place after 2-3 weeks.

What is the role of the CHUM physiotherapy team?

Mélanie Robitaille, PT and her team follow up with patients after the operation, performing manual lymphatic drainage, applying multi-layer bandages and taking measurements. The patient must be diligent in coming for physiotherapy follow-up care at the CHUM. We will collect volumetric and circumferential measurements over several years, as well as quality of life

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questionnaires to help us determine the ideal LVA sites and the number of LVA needed to achieve optimal results.

This is the focus of our research.

LNT and LVA at HMR

Does lymphatic surgery require special training?

When we operate on the lymphatic vessels – which are very fragile and smaller than the veins – we speak of super microsurgery, the grade of difficulty being higher than traditional microsurgery. Lymphatic surgery requires lymphedema specific training and practice since the techniques and instruments are different. At the HMR, LVA and LNT are performed under general anesthesia and last 8 to 12 hours. The HMR team estimates that it can perform 30 lymphatic surgeries per year.

What are the risks associated with lymphatic surgery?

For LVA, there is risk of infection (6-8%), prevented by the administration of prophylactic antibiotics for one week. The need to follow a protocol without compression to protect the anastomoses for 2 to 3 weeks after surgery also creates a risk of lymphedema decompensation for one to two months. The risks are higher for LNT because of the two surgical sites: the donor site and the recipient site.

The greatest fear for the donor site is to cause lymphedema (2% in the groin reported in the literature). Reverse mapping technology can reduce risk by identifying less essential lymph nodes.

Also, lymph nodes tend to be harvested from places where they are abundant, such as the neck, the supraclavicular area, or the omentum. Usually, 3 to 8 nodes are transferred. LNT can be performed simultaneously with breast reconstruction by DIEP (Deep inferior epigastric perforator). During the operation, the scarred and fibrosed tissues are removed and the axillary vein decompressed.

How does LNT surgery work?

LNT is thought to act as a sponge to absorb interstitial liquid. In LNT patients followed with MRI lympho-

OPTIONS AT HÔPITAL MAISONNEUVE-ROSEMONT (HMR) With 55 lymph super microsurgical procedures performed during her subspecialty in lymphatic surgery, Dr Marie-Pascale TremblayChampagne of HMR offers lymphaticovenous anastomosis and lymph node transfer, depending on the severity of the damage to the lymphatic system. imaging at 1 year and 2 years, a lymphatic network seems to regenerate.

European studies have focused on patients who had an axillary node dissection and radiotherapy and who showed a lack of lymphatic network on imaging. One year after LNT, 80-83% of these patients had some lymphatic network in the armpit descending into the arm. No cases of deterioration in the affected limb after LVA and LNT have been reported in the literature.

A risk of induced lymphedema at the donor site is inherent in LNT. What determines the technique to be used?

For LVA, the lymphatic vessels must still function. A person with primary lymphedema (legs, genital) for 20 years is statistically less likely to have functional vessels. However, lymphangiography (SPY ICG) or targeted MRI can be used to check the status of the network of an individual. LVA is not indicated in a person with no functional lymphatic vessels, venous insufficiency (leg lymphedema) or obesity (BMI of 30 or more).

People without functional vessels, but who still have pitting edema (predominance of fluid), may still be candi-

“WAITING 6 TO 12 MONTHS BEFORE SURGERY ALLOWS NATURAL IMPROVEMENT OF SECONDARY LYMPHEDEMA IN HIGHLY OBSERVANT PATIENTS.” Dr Tremblay-Champagne

dates for LNT. This technique is used in particular for irradiated tissues. In the case of venous insufficiency with lymphedema, the final results at 1 or 2 years remain unpredictable. For the obese person, LNT could lead to additional complications and more mixed results.

How long should a person wait after cancer treatment before surgery?

Cancer survivors should allow a minimum of 6 to 12 months after chemotherapy and one year after radiation therapy before they apply for lymphatic surgery. This allows for a natural improvement in secondary lymphedema in highly observant patients, ranging from 1 to 3 years. Patients who see a deterioration in their condition despite DLT or who reach an uncomfortable therapeutic plateau may benefit from surgery.

What results can one expect?

You may have to wait at least 6 months before seeing measurable results. At three months, patients often feel better, but without an impact on measurements. An average decrease in excess volume of 40 to 60% at one year can be achieved for 85% of patients and changes can be observed up to two years after surgery. Only 8% of patients will see no change. Data based on 5-year follow-up showed no recurrence or relapse of lymphedema. Longer term results are not yet available .

How are the results measured?

Circumferential, strength, joint mobility and hypoesthesia measurements are recommended, as well as SPY lymphangiography and repeated lymphoscintigraphy at one and two years.

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measures for lymphedema, commit to a healthy lifestyle and maintain a healthy weight for years to come.

How does weaning from compression work?

After 3 to 6 months of compression wear, the patient can gradually decrease garment wear by two hours every two weeks, depending on the reaction of the affected limb. This tapering off extends over one to two years. Once the limb is stable, the patient will have to change the compression garment every 6 months according to his condition.

Tracing the viable lymphatic network detected through imagery, in preparation for LVA surgery.

MRI lympho-imaging will soon be implemented at the HMR to ensure follow-up in accordance with the techniques found in the current literature. Patients will be followed every 3 months for the first year, then annually for the long term.

What can one expect after surgery?

Recovery initially involves minimal pain for LVA and moderate pain for LNT. The guidelines for LNT are to avoid compressing the chest on the operated side for 2 to 3 weeks and to maintain a distance between the chest and the arm to protect the armpit, day and night. Compression and manual lymphatic drainage can be resumed

soon after LNT, but with LVA there is a relative contraindication to compression for the first few weeks. For LNT, the operated limb is bandaged with Coban in the operating room and for 2 weeks.

This dressing must be changed every 2 days, a service which is not always offered by the community health care system. Afterwards, the patient must self-apply multilayer bandages. The patient should plan for the cost of single-use dressings (Coban), reusable multi-layer bandages (Comprilan and CompriFoam) and all subsequent compression garments for the duration. The return to work (without physical effort) for LVA is about 3 weeks and about 6 weeks for LNT. The patient must continue to follow the precautionary

How will you orient your research?

Current research is trying to determine the ideal time to operate and the choice of the optimal surgical technique for each individual. At the HMR we are particularly interested in studying the choice of technique according to type of patient.

Anne-Marie Joncas is a patient who chose to put her communication expertise at the service of the Lymphedema Association of Québec and other related organizations. Editor of L’info AQL, she is leading strategic plans for the LAQ and provincial expansion of support groups.

Anna Towers MD, FACP, is Associate Professor of Oncology, McGill University and Director of the Lymphedema Program, McGill University Health Centre (MUHC), Montréal.

Right arm of a patient of Dr Tremblay-Champagne showing pre-operative swelling, sutures in place and post-operative bandaging.

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CONTROVERSY

Transfer of vascularized lymph nodes

As lymphatic microsurgery has beco-

clinical improvement. However, no

evaluation of the outcome. This article

me more common, vascularized lymph

consensus has been reached among

reviews these issues and provides the

node transfer ascended to the fore-

experts regarding many details of the

current results of this procedure.

front in many centers for the surgical

procedures, including patient selec-

management of advanced stages

tion criteria, type of treatment, donor,

Source: J Surg Oncol. 2018 Mar 24;

of lymphedema showing substantial

and recipient sites and postoperative

PubMed: 29572824

THE TARGET PATIENT

BIOS

FOR LVA OR LNT IS AN

Dr Michel-Alain Danino is chief of plastic surgery at the CHUM. After

ADULT WITH SECONDARY

graduating in plastic surgery at the Faculty of Medicine in Paris, he pur-

LYMPHEDEMA DUE TO CANCER OR POST-TRAUMA,

sued a 14-month post-doctoral training course in microsurgery at the University of Chiba and the University of Tokyo, in Japan in 1998, where he learned technics with Dr Isao Koshima. Considering his involvement

STAGE 2 OR LESS WITH

in some of the foremost breakthroughs in plastic surgery in the world,

PITTING EDEMA.

including the second face transplant, Dr Danino was a top choice when

THE TARGET PATIENT SHOULD BE NON-OBESE, WITHOUT VENOUS

hired by the Université de Montréal.

Dr Ali Izadpanah is microsurgeon at the CHUM. Graduated from McGill University, he has been fellow of the Royal College of physicians

PROBLEMS IN THE CASE

and surgeons of Canada since 2014. His fellowship in microsurgery was

OF THE LEGS, SHOULD

completed at Mayo Clinic in Rochester with a specialization for upper

BE HIGHLY OBSERVANT

limb and hand surgery. He is completing a second fellowship in plastic

OF COMPRESSION, DLT AND EXPERIENCING

and reconstructive surgery for burn and complex wound surgery.

Dr Izadpanah has extensive experience in plastic and reconstructive surgery. He is director of Provincial Burn Center (CEVARMU).

A DETERIORATION IN QUALITY OF LIFE

Dr Laurence Paek is part of microsurgery team at the CHUM. He

DESPITE CONSERVATIVE

graduated from McGill University in 2009 and did a first fellowship

TREATMENTS. MAJOR CARDIOPULMONARY

in microsurgery at Stanford University with Dr Gordon Lee, after what, he completed a second fellowship in burn surgery at University of Toronto. Dr Paek has also contributed to lymphatic literature.

COMORBIDITIES OR STAGE 4 CANCER UNDER

Dr Marie-Pascale Tremblay-Champagne is microsurgeon at the HMR,

TREATMENT ARE

specialized in lymphatic surgery. Graduated from McGill University, she

EXCLUSION CRITERIA. CHILDREN ARE NOT CANDIDATES FOR THESE SURGERIES.

is fellow of the Royal College of physicians and surgeons of Canada since 2014. She completed her fellowship in microvascular reconstruction and lymphedema surgery under the patronage of Dr Peter Neligan at the University of Washington in Seattle, in 2015. Dr Tremblay-Champagne participated in studies on lymphatic surgery lead by Dr Neligan’s team.

Originally published in Pathways Volume 7, number 3, summer 2018. Copyright Canadian Lymphedema Framework.

Reprinted with permission.

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PATIENTS Patients interviewed between March 13 and April 9, 2018.

Manon, PLANTE

in her 50s ALV at HMR – Lymphedema secondary to breast cancer, first symptoms in September 2016, right arm, fingers very swollen.  I had four LVA on March 26. I spent eight hours in the operating room.

I didn’t find it painful, even though my arm and hand swelled up. Two weeks after surgery, my arm already seems a little lighter than before the operation.

My Coban bandages should have been adjusted and changed more often, but the CLSC nurse was not sure how to do it. I had to guide him and even move it a little higher by myself. That self-adhesive bandage hurt my inner elbow. It would have been good to know how to do it myself. At the hospital where I spent one night, the nursing staff was unfamiliar with the type of surgery I’d had, because it’s so new. In spite of this, they were very helpful.

I keep my arm elevated on cushions during the day and on a body pillow reinforced with a second pillow at night. I am now in multi-layer bandages changed once a week and I’ll be seeing my surgeon again at the end of April. I am off work for a month.

Élyse, MARTIN

34 years old LVA at CHUM – Primary lymphedema for 15 years, significant edema in both legs, recurrent infections. I had surgery on January 31, 2018, six LVA on the feet and the calves of both legs. For now, I’m disappointed with the results and so is my surgeon. When I woke up, his first words were, «Unfortunately, your legs have changed a lot in recent years and I couldn’t do what I wanted to do for you. (I should explain that I was evaluated from imaging done a few years ago). After the operation, my legs swelled as never before. And they were already very big.

They have not yet gone back to the way they were before the operation, despite the fact that I am being followed in a DLT at the CHUM and I use an electric sequential pump at home. I’m discouraged because my recovery period seems much longer than I was told to expect. I would have been off work for a month. As a student, I couldn’t take any longer. I wonder when the swelling in my legs will go down so I can be more comfortable than I am now. I hear that in Asia, patients are hospitalized for one month without compression and I don’t know why we don’t do the same here. I currently wear compression bandages 24 hours a day. Before surgery, I wore my compression garment 12 hours a day, but not at night. Of course, all this may change. I have to be patient and give time a chance.

Olivier, LAGACÉ

23 years old LVA at the CHUM – Lymphedema secondary to a motorcycle accident in 2014, left leg very swollen. I feel better, but I found the recovery time longer and harder than they’d told me. I’ve been off work for two months, the first month without compression, leg elevated 24 hours a day. I had to use a walker for three weeks to get around the house. My partner and I had a hard time accepting the diagnosis of lymphedema. My leg, which was really badly burned in the accident, had an excess volume of 40%. I couldn’t stay seated. After the DLT, the swelling in my leg went down 20%. That was still too much to do everyday activities as usual. A few weeks before the operation, my right leg began to swell at the groin. My doctors think it was a reflux of lymph from the other leg. I had four LVA on January 22, 2018. It was painful afterwards and I had to take morphine for two weeks. As soon as I resumed TLD at the CHUM, 3 times a week

for 3 weeks, things improved and the volume began to decrease. My knee was really weak. Today, my lower left leg is almost the same as the right.

However, 10 weeks after the operation, my left thigh is still swollen. To get back in shape, I’ve slowly gone back to light workouts at the gym. My hat’s off to my surgeons and my family doctor, Dr. Pierre Legault, who did everything he could to find specialists to help me.

Chantal, MIMEAULT

in her 50s TG du cou à l’aisselle gauche à l’HMR – Lymphœdème secondaire au cancer du sein depuis 2010, enflure importante et douloureuse extrêmement difficile à contrôler au bras gauche, léger œdème au bras droit. After the imaging, we immediately moved to plan B: lymph node transfer.

The goal is to decongest my elbow.

I was in so much pain, I felt I’d nothing to lose. My operation was February 8, 2018 and I spent four days in hospital, with some fever the first night. The 10 hours of anesthesia left me a little dazed, but that’s normal. At the moment, I’m on sick leave and I still have difficulty using the computer. Since lymphatic surgery, I’ve been watching my posture, because my collarbone is uncomfortable. From the onset of lymphedema, I was lucky to be trained in self-management by Dorit Tidhar.

Without her teaching, I wouldn’t have got through my convalescence as well as I did. I’ve become a bandage expert!

After the operation, I had a pressure tube installed at the hospital. But I was soon able to return to self-bandaging, which is more effective at containing the swelling. If I had to do it again, I’d do it in a heartbeat! In any case, my surgeon may suggest another LNT, if my condition needs more decongestion.

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WORLD LYMPHEDEMY DAY On March 6th of this year, during International Lymphedema Day, the LAQ bombarded the 250 Québec National Assembly members with emails, asking them to take action on RAMQ-provided health care services for lymphedema. All elected representatives received shocking visual images that clearly explain the problems facing Québecers suffering from this condition.

SINCE THEN:

• More than 11,000 people have signed our on-line petition.

• We have been given a hearing by the National Assembly budget estimates committee.

• The Direction générale de cancérologie (DGC) has agreed to discuss the COMPRESSION

GARMENTS Program with the RAMQ, as well as ACCESS TO TREATMENT!

• We have made the DGC aware of the postoperative challenges involved in getting access to physiotherapy, as well as financial assistance to cover the cost of the numerous garments needed to phase out compression.

Further developments are expected in 2018. Keep informed. Become a member of the LAQ. We are appealing to all of you to help advance our common cause!

To sign the petition, visit change.org and write Lymphœdème – Prise en charge des soins par la RAMQ in the search box. Thank you for sharing this petition with friends, family and others.

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WITH OR WITHOUT SURGERY

MAXIMIZING LYMPHATIC HEALTH! Are you thinking of having surgery for your lymphedema? Would you like to increase your chances of being selected? Are you willing to do whatever you can for optimal surgical results?

You were told you’re not a good candidate for surgery but you still want to reduce the impact of lymphedema in your life? These strategies are for you:

STAY alert!

COMPRESS!

Identify potential problems,

WEAR YOUR COMPRESSION AS PRESCRIBED!

avoid cuts and burns, treat any infections promptly (Athletes’ Foot, ingrown toe nails or infections

If you have a million reasons for not wearing compression,

at the base of the nail).

there’s got to be a problem! Can’t stand multi-layer bandages? Ask for a Velcro garment instead. Does your compression garment feel painful, itchy or too tight?

Change model, material or fitter! Is it too warm? Try kinesio

WORK on the night shift Night compression garments help you RETAIN gains. Newer models are light and airy.

Help CIRCULATE that lymph Breathe deeply to activate the glands in your abdomen.

Use a cushion to elevate your limb when watching TV, using the computer, or even in bed at night. Try lymphatic self-message, as taught by your therapist or the LAQ support groups.

taping, which leaves skin partially uncovered. Compression is costly, but through trial and error, you’ll find the ideal solution. (For more information, see pages 13-14).

CLEAN and HYDRATE The skin of a limb affected by lymphedema reflects a deficient lymphatic system that cannot properly eliminate impurities in the body. Help protect your skin by using a gentle, non-perfumed soap daily along with a good emollient lotion.

Casley Smith EXERCISES Used regularly, this series of exercises developed by Dr Judy Casley-Smith of Australia can boost lymphatic circulation.

See YouTube for a complete demonstration of the technique.

Research: Exercises for arm lymphedema • Casley-Smith exercises for arm lymphedema OR Casley-Smith exercises for leg lymphedema Courtesy of CHUM

BE A TEAM-PLAYER Work with your certified lymphedema therapist! For a list of certified therapists in your area, see the LAQ Resource Guide en.infolympho.ca under resources.

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WATCH your weight!

Like the Boy Scouts, be PREPARED! Ask your doctor for an antibiotic prescription which you can keep on file at your local pharmacy in case of cellulitis. Should you develop redness, hotness or fever, swing into action without delay!

If symptoms persist, go to an emergency clinic.

DIVE IN!

Take a course in Aqua Lymphatic Therapy, the Tidhar method, an activity developed especially for people with lymphedema which combines lymphatic exercise with the natural compression of water.

To find a qualified instructor, contact the LAQ at aql@infolympho.ca or call (514) 979-2463.

COOL!

The more your blood circulates through your veins, the more it stimulates the lymphatic system. For gentle movement, try: yoga, tai-chi, walking, swimming, etc. Respect your limitations, avoid movements that cause discomfort. For more energetic movement, try: tennis, weight training, kick-boxing. Go at your own pace, make your trainer aware of the basics of lymphedema. Once you see how your body reacts, adjust your exercise to your comfort level.

Avoid heat and humidity whenever possible.

During heat waves, stay close to the air conditioner!

Opt for SHADE!

Keep INSECTS at bay!

Mosquito nets, fly swatters, electronic insect zappers, citronella, long, light-coloured clothing, fans, old-fashioned remedies – do everything you can to avoid insect bites that could cause infection in affected limbs.

To calculate a healthy weight, go to http://obesity.ulaval.ca/ obesity/generalities/ evaluation.php

MOVE!

KEEP

Do you have to go out in the sun? Wrap shortstretch bandages over your compression garment to better control swelling and WEAR SUN SCREEN on exposed skin.

Sunburn close to your lymphedema site may cause complications and is difficult to manage.

Watching your weight is crucial in controlling lymphedema. If you are no longer a healthy weight, start gentle physical activity and make healthier food choices.

SPF

45

LEARN self-measurement Forget guesses and approximations! Chart your progress or the way affected limbs react, using RELIABLE data. In general, enter your measurements in your journal once a week, more frequently in times of crisis. Use the same tape measure, at the same points, with the same pressure, at the same time of day.

STAY

motivated!

There’s nothing better than a reward system and group energy to keep you motivated. You know what you like, so spoil yourself when you reach your lympho-objectives! Participate in your local LAQ support groups. You’ll make friends, swap lymphedema challenges, helpful hints and solutions, not to mention cheer each other on!

(Details, page 18)

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DOES YOUR GARMENT FIT WELL?

The complexity of

GARMENT FITTING

BY KATRIN SCHUMANN AND MARIE-EVE LETELLIER

You may have been diagnosed with lymphedema yesterday, post-cancer treatment or perhaps you’ve been living with it since you were born. No matter how long you’ve been living with your diagnosis, most patients will require a life-long commitment to compression garments.

Finding the right garment is like finding shoes that fit you perfectly: you may need to try on several before finding “the one.” Your experience fitting a garment may be similar, although the fitter’s job is more challenging because to get the right fit, he or she must address lymphedema, a condition in which fluids can move around.

Whether you are new to lymphedema management or quite experienced, this article will educate you about your prescription, your fitter and your garment.

Your prescription

Reimbursement for compression varies greatly from province to province and therefore the process for obtaining garments is also different. Please check with your doctor or therapist as to what is required for the compression prescription in your particular situation. As a reference, the following example of a prescription applies most directly to patients in Quebec.

Prescription components • Your complete name • Your diagnosis (e.g. primary lymphedema of the left leg, right arm lymphedema post breast cancer)

• What are your daily activities?

• What sports or exercises are you doing?

• Were you satisfied with your last garment?

• Type of compression fabric: custom-made or standard • Type of garment (e.g. sleeve and glove, stockings, pantyhose) • Compression class (e.g. 20-30 mmHg, 30-40 mmHg) • Accessories (e.g. rubber gloves, rubber pad, butler, on and off aid) • Physician signature with license

Your fitter

Expect to be asked a variety of questions before your fitter even takes your limb measurements.

Here are some examples: • What is your general health situation?

• Do you have any help at home?

• What type of work do you do?

The fitter asks these questions to gather information about your general condition and any possible mobility restrictions. Your answers will also help in the choice of the best donning aid for you (e.g. rubber glove, butler, easy slide).

In order to select the best compression garment fabric for you, the fitter will also inspect your skin (e.g. natural color of the skin, tourniquet marks from bandaging or the old garment).

To confirm your doctor’s prescription, the fitter should do a skin fold test, as the dimension of the swelling is not always visible, but may be discerned through touch. In the eventuality that other symptoms and/or your skin condition prove to be inappropriate for the actual prescription, your fitter will discuss suggested modifications with your lymphedema team: YOU, and your doctor and/or lymphedema therapist.

Your compression garment

Next, the fitter will ask you to select your fabric color. Depending on the complexity of the order, the production of your garment will take some time as custom-made garments are manufactured either in Germany or the United States. While awaiting its arrival, it is important that you keep up your skin care routine, continue to

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bandage or wear your old garment, maintain your self-management routine (e.g. exercises, self-massage), or continue to receive partial therapy with your lymphederma therapist.

Otherwise, the new garment may not fit, due to an increase in your limb volume since the initial measurement.

Any type of lymphedema can be fitted for compression garments, even difficult cases such as male or female genital lymphedema or facial lymphedema.

If you have arm lymphedema, you might also experience swelling at the top of your arm or at your shoulder girdle. A regular sleeve does not cover this area as it stops below your armpit.

A solution could be a custom-made bolero. The bolero is made of a long sleeve and separate glove (if necessary) on the affected side and a short sleeve on the non-affected side. You must have good range of motion in your shoulder in order to put on this type of garment.

If you are experiencing breast and/ or chest wall lymphedema, with or without arm lymphedema, this might be a challenge for both your lymphedema therapist and your garment fitter, as adequately compressing those areas can be difficult. If only breast lymphedema is present, a compression bra might be enough. For chest wall and/or breast lymphedema another solution might be a custom-made compression vest that will cover both the breast and the chest wall. The length of the vest can be adapted and fitted to the area of the swelling and the size of the breast.

For leg lymphedema, your garment needs to cover the length of the swelling, which could be from the toes up to your belly button. Your fitter can inform you about different types of garments (e.g. pantyhose, capri-style stockings, thigh high garment with shorts, etc.).

If you are experiencing abdominal swelling, a good garment solution

might be the use of suspenders to prevent your pantyhose, capri pants or shorts from slipping down.

When your garment is ready, your fitter should help you to put the new garment on and will explain the proper fit: i.e., the position of the seam (if custom-made) and of the darts (special marks for elbow, knee and heel). However, it is suggested you remove it and put it back on yourself in front of your fitter. This will ensure that you can apply it correctly on your own.

It is your responsibility to give feedback to the fitter in regards to how the compression feels and whether there is any discomfort. The new garment will feel tight, but it should not cause constriction, such as numbness in your fingers/hand or toes/foot.

Common situations where the garment must be returned and the affected part re-measured are: 1. the garment is too tight, and you are experiencing numbness in your limb, 2. your garment is too loose, and it keeps sliding down, 3. the length is too long or short. Each custom-made garment comes with a manufacturer’s warranty.

It is important to ask your fitter about the return policy every time that you pick up a new garment, in case you require adjustments.

Measuring is an art and it is important for you to find the right “artist”.

You need to be comfortable and confident with your garment fitter. Make sure that your garment fits proper¬ly as you must wear it every day. Don’t forget that your body will change over time, so your garment should too!

Originally published in Pathways Volume 7, number 3, summer 2018.

Copyright Canadian Lymphedema Framework. Reprinted with permission.

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TIPS AND TRICKS

TRIED AND TRUE SOLUTIONS LEGS

Marie Le Noir, Ste-Julie — For maintenance, compression garment (Capris or knee socks), regular lymphatic drainage. Legs elevated while sleeping and while watching TV, if possible. This, in addition to bandaging therapy several times over the last 14 years.

Elaine St-Michel, Sorel-Tracy — I have to wear my stocking in the daytime. If I stop for any length of time, the swelling comes back. Every now and then, I have lymphatic drainage followed by bandaging at night for several days. Also, I wear a Mobiderm stocking at night, which I don’t like. It moves, so I have to stick it in place, which irritates my skin.

Audray Sobanski, Lille — Day compression with Hemi stocking plus manual lymphatic drainage by physiotherapist and Mobiderm bootee at night.

Nadir Belaidi, Algiers — Multilayer compression for 3-4 weeks plus compression stocking to maintain volume, not to mention lymphatic drainage.

Camille-et Tayfun, Tahiti — I live in the Tropics and can no longer tolerate compression. So, hammock with legs elevated for at least three consecutive hours, ideally, spend the night there. At night, cushions in bed are enough. I wear tight leggings during the daytime.

ARMS

Isabelle Neault, Bécancour — Lymphatic drainage and compression sleeve.

Lyne Binette, Québec — Compression sleeve and lots and lots of exercise! I do 30 reps of abdominal exercise, contracting my stomach 30-45 seconds each time, 30 obliques, then 20 leg raises. A flat stomach is my reward!

Marie-Josée Tessier, Portneuf — Lymphatic drainage has worked miracles for me!

Julie Bérubé, Ste-Brigitte — Sleeve and glove.

Catherine Duval, Québec — A good lymphatic drainage session does the job. But then I discovered Leukotap (kinesio taping). You often see Olympic athletes wearing it if they have to perform when they’re injured. When I apply my “spider’s web”, I feel the pressure in my arm goes down. For my case (moderate lymphedema, detected very early), I divide the Leukotape in five narrow strips, arranged so they stick together at one end. I then apply the tape starting from my shoulder, as far as my fingers, without pulling it tight. You mustn’t put any pressure on the tape and you need to apply it when the arm is bent. Once it’s installed and I unbend my arm, the tape creates little waves on my skin. This opens the lymphatic pathways and improves my circulation. Bliss!

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ARMS (the following)

Gabrielle Kirouac Bernier, Trois-Rivières — Drainage and sleeve during the daytime and if necessary, a garment at night can really help maintain control.

Sylvie Desautels, Granby — Lymphatic drainage, one a month, and exercises.

Elaine Lafontaine, Montréal — Multi-layer bandaging. I find it more comfortable than the sleeve. It’s uglier, for sure, but at work, people no longer notice my permanently broken arm!

Jacqueline Irène Pays, Aix-en-Provence — Sleeve in the daytime, Mobiderm at night, weekly lymphatic drainage. Fairly satisfactory results.

Josyane Schweitzer, France — My arm is under control! Drainage every week (I’ve had 700 since the start of the problem); sleeve with mitten, day and night for ten years. Gentle exercise once a week as well as walking.

Estelle Bolduc, Sherbrooke — Sleeve and gauntlet, lymphatic drainage every three months and dragonboat training.

Karreen Dresdell, MRC Appalachia — Lymphatic self- drainage

Gaétane Boisvert, Québec — Sleeve and gauntlet as well as lymphatic drainage once a week. I notice exercise really helps improve the situation.

TIPS AND TRICKS HELPFUL HINTS FROM SUPPORT GROUPS IN MONTREAL As reported by therapist, Carole Briand.

Dry as a bone! A compression garment must be washed daily in order to keep it supple and effective.

Dry it on a clothes line or a rack at a slight angle. It is good for air to circulate through it as the garment will dry better and faster than when laid flat on a towel.

Better in twos! You need a minimum of two garments per year. If you don’t always have time to wash and dry your compression garment for the next day, order two, at almost the same time, and alternate. Make sure the first garment is a good fit before you order a second one. Each garment will last you 6 months.

Combined, these two garments will last for a full year.

Donning device (aid) By avoiding the need to pull a garment on or off, a donning and/or doffingaid will protect your skin from irritation, maintain effectiveness of the garment and help to position the garment properly. These aids are also helpful to anyone experiencing difficulties due to lack of strength or dexterity.

The fabric device has a strap that you can hang on

a door handle or slide on your foot to easily remove it. The metal device, although more bulky, is also easy to use.

No more sticking! Compression garments may stick under your skirt or your pants. Wear nylon stockings over your compression hose. They’ll form a silky barrier and make your compression garment less visible.

Firmly secure Do you have to adjust your compression garment often? A tube of adhesive lotion will help garments stick to your skin. Apply in vertical strips from the top of your garment, rather than horizontally.

Find out more about this glue from your fitter.

Heat and bacteria The heat of summer increases perspiration. Make sure you wash your garments daily to avoid bacteria caused by an accumulation of sun screen, oils and perspiration. Baby powder or antifungal powder in your shoes will help protect your feet from bacterial infection.

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SUPPORT GROUP

GROUP POWER To stay up to date on new developments in lymphedema treatment, including medical advances and surgical procedures, or simply to keep your motivation strong, there’s nothing better than joining an LAQ support group.

Contact us for more details on membership. If there’s an LAQ group active in your region, we will put you in touch with the right person. If not, we will match you with a certified therapist who will help

THE FORMULA IS SIMPLE, REQUIRES LITTLE ENERGY AND IS EXTREMELY REWARDING!

you organize a group and be available to facilitate once it’s up and running. The

Let us know! You can reach us either by

LAQ can also help you get in touch with

email at aql@infolympho.ca, by phone

affected people in your region in order to

at 514-979-2463, on Facebook: Associa-

set up a team of volunteers. You are a

tion québécoise du lymphœdème or

health organization and you would like

by regular mail at 6565 rue St-Hubert,

to welcome an LAQ support group?

Montreal, QC, H2S 2M5.

CHECK OUT OUR TOOLBOX Website: en.infolympho.ca Facebook: Association québécoise du lymphœdème Helpline: Certified therapists will answer your questions – 514-979-2463 Risk reduction leaflet Your resource for lymphedema

Treatments leaflet

Pathways in French

Self-management booklet

L’iNFO

& articles from

Québec and beyond

FREE Special Issue

Magazine (L’Info AQL – special edition “Conference”) Resource Guide

The right FIT

Why not become a member? It could change your life!

TEEN camp The Benefits of YOGA LAUNCHING a support gro up

www.infolym pho.ca Join us on Faceb ook Online acces s to this maga zine and Pathways in English for LAQ memb ers

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