Surgery for Lymphedema Vol. 28, No. 4 October-December 2015

Managing Editor: SASKIA R.J. THIADENS, RN Graphics: ALPHAGRAPHICS San Francisco, CA

Editorial Committee: JANE ARMER, PHD, RN, FAAN MARCIA BECK, APRN, BC, CLT-LANA KATHLEEN FRANCIS, MD MEI R. FU, PhD, RN, ACNS-BC, FAAN, Chair BONNIE B. LASINSKI, MA, PT, CLT-LANA BETTY SMOOT, PT, DPTSc CATHERINE M. TUPPO, PT, CLT-LANA

NATIONAL LYMPHEDEMA NETWORK, INC. 225 Bush Street, Suite 357 San Francisco, CA 94104 Telephone 415-908-3681 Website www.lymphnet.org E-mail [email protected]

Mission Statement: The mission of the National Lymph- edema Network is to create awareness of lymph­­edema through education and to promote and support the availability of quality medical treatment for all individ­uals at risk for or affected by lymphedema.

The NLN is dedicated to: * promoting research into the causes, prevention, and treatment  of lymphedema; * securing adequate insurance cover- age for medically necessary, safe, and effective treatment; * expanding the number and geo- graphical distribution of lymph- edema treatment facilities and certified therapists.

To achieve these goals, the NLN dissem­inates information about lymph- edema to healthcare professionals so they can appropriately counsel their patients on its avoidance, and pre- scribe safe, effective treatment for those affected by this condition. The NLN also provides this information to the gen- eral public. In This Issue THERAPIST PERSPECTIVE 25 PRESIDENT’S MESSAGE 2 NUTRITION 27 SURGERY FOR LYMPHEDEMA 3ASK AN EXPERT 29 SURGICAL TECHNIQUES 7 PATIENT PERSPECTIVE 30 CASE STUDY 1 10 NEWS & NOTES 32 CASE STUDY 2 12 SUPPORT GROUP SCHEDULE 34 RESEARCH PERSPECTIVE 14 MESSAGE FROM NLN BOARD CHAIR 35 RESOURCE GUIDE 17 NLN EDUCATIONAL MATERIALS 36 President’s Message

While writing my President’s message for our 4th quarter of EXECUTIVE DIRECTOR LymphLink, and preparing for the upcoming 25th World Congress of Saskia R.J. Thiadens, RN Lymphology in NLN’s hometown San Francisco, I vividly remember when I first became aware of the ignorance of swollen extremities. BOARD OF DIRECTORS I quickly realized the enormity of the disease and the need for Patricia Egan, MS, MBA, Board Chair awareness and education in the lymphatic system. I reached out Michael Cannon, MBA Kris L. Maser, JD locally, and nationwide to learn more and was shocked that there was not one doctor in the Nalini Murdter, PhD US who could provide any guidance about diagnosis or treatment options. As a nurse I simply Eva M. Sevick-Muraca, PhD Nicole L. Stout, DPT, CLT-LANA could not accept that there was no support and treatment for this patient population! I found Saskia R.J. Thiadens, RN out about the 12th International Society of Lymphology Congress in Tokyo and decided to Wade P. Farrow, MD, CWSP, FACCWS, Immediate Past Chair attend the Congress in 1989. At that time only scientists attended the Congress. As a nurse I wondered whether I belonged there and did not feel welcome. Twenty-seven years later, MEDICAL ADVISORY COMMITTEE the NLN is proud to join forces with the ISL and Sentinel Lymph node Oncology Foundation in bringing together key researchers, clinicians, therapists, patients, patient advocates and a Jane M. Armer, RN, PhD, FAAN Marcia Beck, APRN, BC, CLT-LANA large delegation of industry partners from 33 countries for this historic congress. If you were Constance M. Chen, MD not able to attend, we will publish a detailed report on the Congress in the next LymphLink. Debra Daugherty, OTR, CLT-LANA Joseph L. Feldman, MD, CLT-LANA Kathleen Francis, MD This issue of LymphLink covers the “state of surgery for lymphedema”. In the last decade Mei R. Fu, PhD, MS, MA, RN, APRN-BC Jane Kepics, PT, DPT, CLT-LANA there has been a dramatic increase in overall interest among surgeons around the world Bonnie B. Lasinski, MA, PT, CI, CLT-LANA regarding surgical interventions to manage lymphedema. Patients are hopeful that surgical Marga Massey, MD, CLT, FACS Erik Maus, MD, CWS, CLT options might reduce the amount of daily self-care necessary to control their condition. Kathryn McKillip Thrift, BS, CLT-LANA However, we need clinical trials and evidence based research with long term follow-up to Sheila H. Ridner, MSHA, MSN, RN, PhD Saskia R.J. Thiadens, RN know whether surgery can in fact reduce the self-care necessary to control lymphedema. All Catherine M. Tuppo, MS, PT, CLT-LANA Jamie Wagner, DO of this takes time and close follow-up.

We are pleased that Dr. Jay Granzow, a well-respected plastic surgeon in the LE community, is sharing his great interest and expertise in this issue. Dr. Granzow provides a NLN® LymphLink detailed review of the various surgical procedures, and stresses that proper patient selection for surgery as well as coordination with a lymphedema specialist are critical to achieve optimal outcomes. NATIONAL LYMPH­EDEMA NETWORK 225 Bush Street, Suite 357 San Francisco, CA 94104 Dr. Hakan Brorson, also well known in the literature and lymphology world shares his work Telephone 415-908-3681 in Liposuction. Dr. Brorson shocked the LE community in the early 1990’s with this invasive Fax 415-908-3813 procedure. Today many surgeons from around the world are trained by him and see excellent 800-541-3259 Website www.lymphnet.org results. The key is wearing a well fitted garment 24/7. Email [email protected]

Advertisements and copy to be considered for Dr. Granzow also describes two case studies. The first is a young woman with Stage 3 publication must be received no later than 45 days primary unilateral leg LE who did not respond to CDT, and opted to have Suction Assisted prior to the month of publication. For advertising rates, please call the NLN® at 415-908-3681, Protein Lipectomy (SAPL). The second is a 42-year- old woman with breast cancer-related Monday-Friday, 9:30 A.M. to 5:00 P.M. (PDT) to lymphedema (BCRL), who had Vascularized Lymph Node Transfer (VLNT) and simultaneous leave your request. Please note that although all advertising DIEP flap breast reconstruction. Both patients had excellent results. material is expected to conform to ethical (medical) standards, inclusion in the NLN® LymphLink does not constitute a guarantee or endorsement by the Dr. Robert Klein covers the Q corner and provides us with excellent practical guidelines to National Lymphedema­ Network of the quality or prepare for VLNT. Dr. Jaume Masia, a surgeon from Barcelona, shares his interesting research value of such product or service, or of the claim made of it by its manufacturer or owner. in pre-operative imaging and clinical assessment between 2007 and 2014. Thank you both The goal of this publication is to provide for sharing your work with our readers. information specific to the needs of lymphedema patients and health care providers. ©2015 by the NLN. All rights reserved. Reproduction in whole or in part without written Julie Soderberg, a LE therapist, talks about her work in surgery and the importance of pre- permission from the publisher is prohibited. NLN® and post operative care and close follow up with the patients and home therapists. Joanne and the NLN® logo are registered trademarks of the National Lymphedema Network, Inc. da Costa, a nurse/patient shares her amazing journey with BCRL and recurrent episodes of infections that caused worsening of her LE and negative impact on her daily activities. DEADLINE FOR January/March 2016 Continues on page 33 Issue of the NLN LymphLink: All copy, renewals, and payments Cover Photo: Hands of a patient with right arm lymphedema. The patient is a professional artist specializing in glass sculptures. must be received no later than The lymphedema was not well controlled with a compression garment. In addition, glass shards from her work continually October 15, 2015 ~ 5:00 PM PST lodged under the garment, causing irritation and infections. Following a successful vascularized lymph node transfer (VLNT), the patient was able to control the lymphedema and work successfully without the use of a compression garment. 2 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 The Current State of Surgery for Lymphedema

By: Jay W. Granzow, MD, MPH, FACS Associate Professor of Surgery, UCLA Division of Plastic Surgery, Manhattan Beach, CA

Our current knowledge of the Effective lymphedema surgeries essential in achieving excellent results. lymphedema disease process have existed for many years and [1-3] has advanced tremendously in continue to be refined and improved. recent years. While non-surgical We have found that best results are The fluid predominant portion management remains the first line achieved when surgery is performed of lymphedema may be treated standard of care, safe surgical as part of a comprehensive treatment effectively with surgeries that involve alternatives now exist which can system incorporating specialized transplantation of lymphatic tissue, provide effective and long-term lymphedema therapy before and after called vascularized lymph node improvements. surgery. The success of lymphedema transfer (VLNT), or involve direct surgeries also highly depends connections from the lymphatic At first, lymphedema swelling is on the training, experience, and system to the veins, called composed mostly of lymphatic fluid. relevant expertise of the surgeon and lymphaticovenous anastomoses (LVA). In this early stage, the swelling is more lymphedema therapist. VLNT and LVA are microsurgical amenable to conservative treatment. surgeries that can improve the Patients have also responded well to Modern lymphedema surgeries patient’s own physiologic drainage of lymphedema surgery to reverse or are much more precise and less the lymphatic fluid, and we have seen greatly decrease the fluid swelling. invasive than previous radical attempts the complete elimination for the need Over time, the lymphatic fluid can at a surgical cure. Older procedures, of compression garments in some of bring about permanent deposits of such as the Charles Procedure, our patients. These procedures tend solids in the tissues that are more involved aggressive removal of the to have better results when performed difficult to treat. Lymphedema swelling skin and deeper tissues down to the when a patient’s lymphatic system has also greatly increases the risk of level of the muscle fascia, with skin less damage. Therefore, patients with dangerous infections, called cellulitis, grafts placed over the raw areas. early stage lymphedema tend to have which can be severe in patients with Fortunately, such invasive procedures more impressive results with these lymphedema. Arm or leg swelling are now reserved only for a very small procedures. can often progress to cause functional number of extreme cases involving impairments that interfere with work thickened, pendulous, and inflamed Some studies have shown variable and activities of daily living. skin and tissues. results when VLNT or LVA are used to reduce volume. [4-6] We find better Lymphedema results using conservative therapy surgeries have been and compression first to reduce the shown to produce excess fluid volume, and then using significant and lasting VLNT or LVA to reduce the amount of reductions both in the size compression and therapy needed to of the affected arm or leg maintain the volume reduction. and also the amount of therapy and compression Vascularized Lymph Node Transfer garment use required (VLNT) for treatment. No single technique is optimal VLNT surgery involves the for all presentations. microsurgical transfer of a small Rather, careful patient number of lymph nodes and selection after a complete surrounding tissue from another part course of conservative of the body, called a donor site, to lymphedema therapy the area affected by lymphedema. has been completed is Multiple donor sites have been critical. Individualized reported and include the groin, torso, Figure 1: Patient with right arm lymphedema following treatment for breast cancer with bilateral mastectomy, right lymph node dissection, lymphedema therapy supraclavicular area (near the neck and radiation therapy. A) Arms prior to surgery; B) 4½ -year stable integrated into the above the collar bone), and submental result following VLNT performed together with a DIEP flap for breast treatment plan before areas (underneath the chin). [5,7,8] reconstruction. She requires no daily garment or therapy. and after surgery also is October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 3 Surgery using VLNT is thought a radioactive tracer similar to that LB involves connection of lymphatics to improve lymphedema through used in lymphoscintigraphy, or using in the affected arm or leg directly multiple mechanisms. Surgical scar specialized blue dye taken up by to healthy, functioning lymphatic release and interposition of healthy the peripheral lymphatics. [1,3,19] vessels in a donor area. The donor tissue to prevent reaccumulation of During the dissection of the lymph lymphatic vessels are mobilized for scar tissue are performed as part of node-containing flap, the lymph long distances from the surrounding the surgery if scar tissue is accessible, nodes draining the arm or leg are thus tissues, the distal (far) ends divided such as in the axilla. Regrowth identified and preserved and only a and the entire length of vessel tunneled of remaining lymphatics into the small number of peripheral lymph past the area of lymphatic blockage. transplanted lymphatic tissue and an nodes are harvested. The authors reported improvements in additional direct pumping mechanism both limb volumes and the lymphatic also have been described. [9-12] Lymphaticovenous Anastomosis transport index, and volume reductions Anti-inflammatory effects of lymph (LVA) were easier to achieve in arms than node transfer flaps also contribute, legs. This type of procedure presents including decreased tissue fibrosis and LVA surgery is the direct the theoretical risk of new lymphedema increased expression of growth factors connection of lymphatic vessels to at the donor harvest site. [28-29] such as VEGF-C. [13] nearby veins. These connections as very small, usually much less Suction Assisted Protein Lipectomy This surgery has been shown in than 1mm in diameter, and require (SAPL) well-established medical literature supermicrosurgical expertise. The for the last 15 years to be effective procedure was first described in The solid-predominant swelling in reducing the swelling, symptoms, 1969 by Yamada and subsequently often found in later stages of and associated problems with by O’Brien in the 1970s. [20- lymphedema can be treated effectively lymphedema. The need for ongoing 21] Significant advances in with a surgery called suction- lymphedema therapy and compression supermicrosurgical technique for LVA assisted protein lipectomy (SAPL). garment use can be decreased were further described by Koshima. SAPL surgeries allow removal of significantly. The incidence of cellulitis [22] Connections usually are made into lymphatic solids and fatty deposits and infection in the affected extremity veins with competent valves to allow that are otherwise poorly treated by has also been shown to decrease. the one-way movement of excess conservative lymphedema therapy, [1,14] lymph back into the venous system. VLNT, or LVA surgeries. In the peripheral parts of the arm or Safety and surgical expertise leg, closer to the hands or feet, single SAPL has been proven to be an are critical to minimize the rare risk or multiple superficial lymphatics are effective and long-term solution for of lymphedema occurring at the connected to veins. In the proximal lymphedema in many patients. The donor site. [15-18] The use of reverse areas, closer to the armpit or groin, procedure is different from standard lymphatic mapping also can minimize the lymphatics are larger and fewer, cosmetic liposuction, which is not this risk by mapping the lymph nodes and larger connections typically are suitable to treat lymphedema. SAPL draining the arm or leg closest to the performed. The location and types has been described using various lymph node flap donor site, using of connections can vary considerably names including circumferential from patient to patient suction assisted lipectomy (CSAL), and are dependent on liposuction in lymphedema, and the patient anatomy, lympho-liposuction. [3,30] First surgeon experience, and introduced in 1987, SAPL techniques the progression of the have been refined over the years and lymphedema disease itself. have produced significant objective Since no donor site is benefit in clinical trials with long- required and only a fraction term follow-up. This surgery greatly of the lymphatic vessels in decreases the incidence of severe the affected arm or leg are extremity cellulitis and hospitalizations connected, LVAs tend to be requiring intravenous antibiotics the least invasive and have to treat such infections. Medical the lowest overall surgical literature overwhelmingly supports risk and recovery among the safety and efficacy of this surgical any of the lymphedema treatment. We know of no studies surgeries. [23-26] This or reports which have shown the also makes LVA idea for procedure to be ineffective or harmful use in prevention of future to patients, if performed properly lymphedema. [27] by an experienced surgeon with close coordination and post surgical Lymphaticolymphatic treatment by a lymphedema therapist

Figure 3: Patient with 20-year history of congenital chronic, solid- Bypass (LB) with SAPL experience. [31-34] predominant lymphedema of the left leg. A) Legs prior to surgery; B) Postoperative result. The patient has a stable reduction of First described in Published studies document a approximately 108% (treated leg slightly smaller than unaffected leg) 2 years after SAPL surgery. 1986 by Baumeister et al, 75% reduction in the incidence of 4 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 infections and an average 90 to 110% the length of the surgery and solid Figure 4: Patient with a 19-year history of chronic reduction in excess volume. These materials removed, and need for lymphedema following history of right breast cancer treated with lumpectomy, lymph node include a 17-year, prospective study progressively smaller, specialized, dissection and radiation therapy. Patient required of 120 patients with arms treated with custom-fitting garments after surgery. daily prophylactic antibiotic due to large number SAPL, and an 8-year, prospective Lymphedema therapy performed by of recurrent arm cellulitis infections A) Prior to surgery; B) 25 months following combination of study of 41 patients with legs treated a specialized lymphedema therapist SAPL followed later by left VLNT. She achieved with SAPL. In our own published with specific experience with the SAPL a stable reduction in volume of approximately series, we have reported average is also essential to proper outcome 103% (treated arm slightly smaller than unaffected arm), patient is out of compression garment 8-12 infection reductions of about 80% and following the procedure and cannot hours every day, had no further cellulitis with no excess volume reductions of 111% be substituted with a simple set of prophylactic antibiotics needed. in arms and 86% in legs. Statistically postoperative written instructions to significant reductions in lymphedema the patient or therapist. impact on daily activities, ability to work, improved limb function, reduced Patient Selection lymphedema-specific emotional distress, and a clear improvement in Because the different patient quality of life have also been lymphedema surgeries address shown. [1,35-37] different aspects of lymphedema swelling, proper patient selection is The safety of SAPL surgery has vital to the success of any surgery been studied in medical literature, for lymphedema. LVA and VLNT which found the function of the best address the fluid portion of lymphatics to be unaffected by lymphedema swelling which typically the surgery. [38] In our experience, is more prevalent during the early The best candidates for surgery appears also to improve the stages of the disease process. SAPL lymphedema surgery are patients lymphatic drainage in the arm or best removes the solid component who have tried and failed a leg after healing has occurred, and of the swelling, usually found in later, properly planned and administered we have had no cases in which the chronic cases. For example, an arm lymphedema therapy regimen that patient’s lymphedema has worsened or leg affected by late-stage, chronic usually includes of manual lymphatic from the procedure. Continuous lymphedema which never reduces drainage (MLD), fitted compression compression garment use under the in size to even close to that of the garment use, and bandaging. One care of a trained lymphedema therapist opposite, unaffected side even on or more courses of complete following the surgery is essential to a patient’s best day with maximum decongestive therapy (CDT) usually prevent the reaccumulation of the lymphedema therapy is very likely have been performed. Good pathologic lymphedema solids and to be characterized by solid, rather candidates are willing to continue fat. Again it must be emphasized than fluid swelling. In such a case, with lymphedema therapy before and that SAPL is very different from significant volume reduction is much after any surgical procedure, although cosmetic liposuction in many ways, less likely with LVA or VLNT, and much it is often possible to reduce the including the type and amount of more likely with SAPL. For example, in therapy and compression garment lymphedema therapy required, the a study by Damstra, LVAs performed requirements after a successful way the procedure is performed, for patients with solid predominant surgery. Poor candidates for lymphedema lymphedema surgery are patients found little that have not or are unwilling to have additional lymphedema therapy, who are looking improvement for a “quick fix” type of procedure, in reduction of or who are greatly overweight. excess volume. Obesity and morbid obesity usually [39] However, produce poor surgical outcomes LVA and/or not only with lymphedema surgeries VLNT intended but also with surgeries in general. to decrease Meaningful weight loss through a the amount of coordinated program, which could compression include appropriate weight-loss garment use and surgery, should be concluded prior therapy required to consideration for a lymphedema (rather than to surgical procedure. decrease excess volume) could be Importance of Integrated performed after Lymphedema Therapy SAPL removes the stagnant Lymphedema therapy that is Figure 2: Imaging of donor site lymph nodes obtained as part of reverse lymphedema carefully integrated into any surgical lymphatic mapping to minimize risk of lymphedema at a surgical lymph node solids first. [40] treatment plan is of paramount donor site. Lymph nodes containing tracer as seen in these images are left intact importance. A lymphedema and not taken during the VLNT procedure.

October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 5 surgeon must work closely with a be used to treat both solid and then gynecological malignancies, would lymphedema therapist to insure the fluid components of lymphedema limit application. best lymphedema therapy course separately. For instance, VLNT/LVA is given both before and after any can be performed once healing after Growth factors, such as VEGF-C, surgical procedure. This is especially the SAPL surgery is complete to help have been shown to be related to true for the SAPL procedure, where address the persistent accumulation of lymph vessel growth and increased pre- and postoperative planning, lymphatic fluid. We have documented lymph transport parameters such as measurements, and lymphedema significant reductions both in capillary filtration capacity. [43] The use therapy are vital to the success excess limb volume and also in the of growth factors to stimulate growth of the surgery. Ideally, long-term requirement for postoperative garment of lymphatic vessels in an affected lymphedema therapy is administered use in medical literature with the area has been studied in animals for by the patient’s local lymphedema staged SAPL and VLNT combination of many years. However, long term use therapist under the direction of the procedures. [40] and safety in humans has not been lymphedema surgeon or surgical established. [44-47] lymphedema therapist. On the Horizon Overall, multiple effective Combined and Staged Lymphedema Research efforts include surgical options for lymphedema Surgeries implantation of nanofibers across exist. Surgical treatments are not scarred areas of lymphatic obstruction a “magic bullet”, and should be Effectively treating lymphedema tested in an animal model. [42] pursued in the context of continuing surgically now includes using multiple Possible advantages of such an lymphedema therapy and treatment surgeries with proper therapy. approach would be lack of a donor site to optimize each patient’s outcome. Physiologic procedures such as VLNT and possibly shorter surgery times. When performed by an experienced and LVA can be combined during Limitations include lack of long-term lymphedema surgeon as part of the same operation or in sequential results and lack of healthy patient an integrated system with expert operations for increased effectiveness. tissue transfer to decrease the chance lymphedema therapy, safe, consistent, [3,41] for new scar formation. Also, the need and long-term improvements can be for defined scar site to be bypassed, achieved. Staged procedures can also such as the case in lymphedema after [email protected] References available in online version

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61824 RN © 2014 BSN medical Inc. REV 07/14 6 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 Circumferential Suction-Assisted Lipectomy is the Only Surgical Procedure that Can Normalize a Large Chronic Non- Pitting Lymphedema

By: Håkan Brorson, MD, PhD Department of Clinical Sciences, Lund University, Plastic and Reconstructive Surgery, Skåne University Hospital, Lund University, Malmö, Sweden.

Introduction in patients with arm lymphedema Extremity volumes are measured and if following breast cancer treatment.2,3 the excess volume is still troublesome, Circumferential suction-assisted Recent research shows that chronic CSAL is carried out. CSAL should lipectomy (CSAL) techniques have inflammation leads to deposition of be used as a method to remove fat, proved to be a valuable tool in various excess adipose tissue.4,5 Microsurgical not fluid, even if theoretically it could aspects of reconstructive surgery. procedures using lymphovenous remove the accumulated fluid in a While it is clear that conservative shunts, lymph vessel transplantation, pitting lymphedema without excess therapies such as complex and vascularized lymph node adipose tissue formation. decongestive therapy (CDT) and transfer,6-10 do not remove adipose controlled compression therapy (CCT) tissue; thus complete reduction cannot should be tried in the first instance, be achieved with these procedures. options for the treatment of late-stage lymphedema that is not responding to this treatment is not so clear. Surgical pro­cedures have been developed and described to address vari­ous clinical aspects of the pathophysiology of lymphedema. Microsurgical techniques are promoted to provide physio­logic drainage of excessive lymphatic fluid. In many late-stage cases though, adipose tissue deposition and fibrosis are the predominant manifestations of Figure 1. Transection of a normal (left) and the disease process. Surgical therapies a lymphedematous arm (right) showing the aimed at adipose tissue removal can abundance of adipose tissue. (Courtesy: Dr provide signifi­cant symptom relief C-H Håkansson, Department of Oncology, Lund for affected patients. CSAL enables University Hospital) complete removal of the deposited adipose tissue leading to complete Figure 2a. Marked lymphedema of the arm after volume reduction both in early and in When can CSAL be performed? breast cancer treatment, showing pitting several late stage lymphedema. centimeters in depth (stage I edema). The arm Candidates for this procedure swelling is dominated by the presence of fluid, i.e. Is there any evidence for adipose are patients who have been optimally the accumulation of lymph. tissue in lymphedema? treated with conserva­tive therapy Figure 2b. Pronounced arm lymphedema after and show no or minimal pitting (1–2 breast cancer treatment (stage II-III edema). There Clinicians often believe that mm) (Figure 2). Some patients, due is no pitting in spite of hard pressure by the thumb the swelling of a lymph­edematous ineffective conservative treatment, for one minute. A slight reddening is seen at the extremity is purely due to the can show more pitting. As such, some two spots where pressure has been exerted. The accumulation of lymph fluid, which can patients selected for CSAL techniques ‘edema’ is completely dominated by adipose tissue. be removed by the use of noninva­ may have some edema present, and in The term ‘edema’ is improper at this stage since sive conservative regimens, such some cases around 4–5 mm of pitting the swelling is dominated by hypertrophied adipose as CDT and CCT. These therapies in an arm lymphedema and 6–8 mm tissue and not by lymph. At this stage, the aspirate work well when the excess swelling in a leg lymphedema can be accepted contains either no, or a minimal amount of lymph. consists of accumulated lymph, but if the thera­pist cannot reduce it do not work when the excess vol­ume further. If the presence of edema fluid Compression garments is dominated by adipose tissue as is the major disease manifestation, can be seen in a chronic lymphedema the lymphedema must be treated Early and continuous compression (Figure 1).1 Computer tomography and conservatively to transfer it into a therapy is imperative to the success of dual-energy X-ray absorptiometry has non-pitting state, where the excess the CSAL protocol. Two custom-made shown a high content of adipose tissue volume consists of adipose tissue. compres­sion garments are measured

October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 7 preoperatively using the healthy arm or has been treated, a sterilized custom- Postoperative regimen: Controlled leg as a template and one set is put on made compression sleeve and glove is Compression Therapy during surgery. applied to stem bleeding and reduce postoperative edema. The tourniquet Garments are removed two days Preoperative investigations is removed and the most proximal postoperatively so that the patient can part of the upper arm or leg is treated take a shower. Then, the other set of Limb volume measurements using the tumescent technique.13 gar­ments is put on and the used set is are a mainstay evaluation tool in the and then the compression sleeve is washed and dried. The patient repeats treatment protocol of lymphedema. pulled up to compress the proximal this after another two days before Volumes of both extremities are part of the upper arm. The inci­sions discharge. The patient alternates always measured at each visit using are left open to drain through the between the two sets of garments, water plethysmography, and the sleeve. The aspirate contains 95% fat changing them daily so that a clean difference in volume is desig­nated in mean (Figure 3). Oper­ating time is set is always put on after showering as the excess volume.1,11 Particular approximately two hours for arms and and lubricating the arm. Washing to the lower extremity, venous color 3 hours for legs (Figure 4). ‘activates’ the garments by increasing Doppler examination is used to rule the compression due to shrinkage. The out any venous insufficiency, which Long term outcome patient is seen after one months when can influence leg swelling. In addition, arm volumes are measured. the combined­ occurrence of venous The techniques to achieve the and lymphatic insufficiency is a most desirable results have changed At the three-month visit, the arm known entity affecting some patients. with increasing experience. Today, is measured for new custom-made Lymphoscintigraphy provides useful chronic non-­pitting lymphedema of garments. This procedure is repeated information on not only the anatomy, up to 4.5 L in arms and more than at six, nine, and 12 months. When but also on the lymph transport. We 8 Lin legs in excess volume can be complete reduction is achieved, use it mostly in patients with primary effectively removed by use of CSAL sleeves without straps are ordered. If lymphedema and in patients with (Figure 5).14 Maxi­mal reduction is complete reduction has been achieved unknown leg swelling, for example, usually achieved between three and at six months, the nine-month control when lipedema is suspected. six months. Long-term results have may be omitted. If this is the case, not shown any recurrence­ of the a quantity sufficient for six months Surgical technique arm swelling with the permanent use of garments are prescribed, which of com­pression garments (Figure normally means double the amount The use of power-assisted CSAL 6).1,11,14,15-18 In addition, promising that would be needed for three facili­tates the removal of adipose results can also be achieved for leg months. When the excess volume has tissue and reduces surgeon-fatigue, lymphedema (Figure 7), with maximum decreased as much as possible— particularly in the lower extremity, reduction usually occurring at around usually the treated arm becomes which can be more demanding to twelve months (Figure 8).19,20 somewhat smaller than the normal treat. To minimize blood loss, a arm—and a steady state is achieved, tourniquet is utilized in combination then new garments can be prescribed with tumes­cence, which involves using the latest measurements. In this infiltration of 1–2 L of saline containing­ way, the garments are renewed three low-dose adrenaline and lidocaine.12,13 or four times during the first year. Two Through approximately 15–20 3-4 sets of sleeve and glove garments are mm-long incisions, CSAL is performed always at the patient’s disposal; one is using 15- and 25-cm-long cannulas worn while the other is washed. Thus, with diameters of 3 and 4 mm. When a gar­ment is worn permanently, and the arm or leg distal to the tourniquet

Figure 3. The aspirate contains 90– 100% adipose tissue in general. This picture shows the aspirate collected from the lymphedematous arm of the patient shown in Figures 4, 5, and Figure 4. Liposuction of arm lymphedema. 7 before removal of the tourniquet. The procedure takes about two hours. From The aspirate sediments into an upper preoperative to postoperative state (left to right). adipose fraction (90%) and a lower fluid Note the tourniquet, which has been removed at (lymph) fraction (10%). the right, and the concomitant reactive hyperemia.

Figure 5a. A 67-year-old woman with a non-pitting arm lymphedema for 5 years. Preoperative excess volume 3580ml. Figure 7. Primary lymphedema: Preoperative excess Figure 5b. Postoperative result. volume 6630ml (left). Postoperative result after two years (right). 8 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 Figure 6. Mean (± Figure 8. Mean SEM) postoperative postoperative excess excess volume volume reduction reduction in 124 in 44 patients with women with arm primary or secondary lymphedema leg lymphedema. following breast cancer.

treatment is interrupted only briefly For legs we use up to two or Summary when showering and, possibly, for three compression garments on top formal social occasions. The life span of each other, depending on what is • Excess volume without of two garments worn alternately needed to prevent pitting. A typical pitting means that adipose tissue is is usually 4–6 months. For arms, example is compression class 3 with responsible for the swelling. complete reduction is usually achieved a panty, on top of this, a leg long • As in conservative treatment, after 3–6 months, often earlier. After garment, compression class 2, and the lifelong use (24 h a day) of the first year, the patient is seen a below-the-knee garment,­ com­ compression garments is mandatory again after six months (1.5 years after pression class 2. Thus, such a patient for maintaining the effect of treatment. surgery) and then at two years after needs two sets of 2–3 garments. Since all patients comply with this surgery. Then the patient is seen once Depending on the age and activity before surgery nothing new is added. a year only, when new garments are of the patient, two such sets can last • Adipose tissue can be removed prescribed for the coming year, which for 2–4 months. That means that they with CSAL. Conservative treatment is usually four garments and four must be prescribed 3–6 times during and microsurgical reconstructions gloves (or four gauntlets). For active the first year. After com­plete reduction cannot do this, thus CSAL in the only patients, 6–8 garments­ and the same has been achieved, no panty is needed surgical method to achieve complete amount of gauntlets/gloves a year are and stay-up garments are ordered, and reduction of the excess volume of the needed. Patients without preoperative the patient is seen once a year when lymphedematous limb. swelling of the hand can usually stop all new garments are prescribed for the using the glove/gauntlet after 6–12 coming year. [email protected] months postoperatively. References available in online version

October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 9 CASE STUDY 1

Use of Suction Assisted Protein Lipectomy (SAPL) for Treatment of Chronic, Non-Compressible Lymphedema of the Leg

By: Jay W. Granzow, MD, MPH, FACS Associate Professor of Surgery, UCLA Division of Plastic Surgery, Manhattan Beach, CA

The patient is a 34-year-old Preoperative goals included to a negative 436 cc by 10 weeks after woman with a history of congenital reduction of excess volume, reduction surgery (a 109% decrease in excess lymphedema of the left leg for 17 of discomfort, increase in range of volume from her initial presentation). years. She previously had complete motion, and increase in ability to work The volume of her leg has remained decongestive therapy (CDT). However, and exercise normally. stable since that time. The patient’s her response to lymphedema therapy ability to work and exercise has was poor and she stopped going to In preparation for surgery, the normalized and discomfort has been therapy. She wore a class 2 over-the- patient was diligent with bandaging eliminated. She has been able to fit counter compression garment during every day and lost approximately 10 normal clothes, including jeans and the day and a Reid Sleeve at night. pounds by increasing her cardio and boots, for the first time since she was She did not perform compression weight training regimen. This regimen a teenager. She continues to wear bandaging. reduced the volume excess from 5079 a class 3 thigh high (first layer) and cc to 2976 cc, a volume reduction of a class 2 thigh high (second layer) Her left leg was massively larger 41%. Afterwards, suction assisted custom-fit, flat knit compression than her right leg and made fitting protein lipectomy (SAPL) surgery was garments 23 hours per day. Her knee normal clothes or shoes impossible. performed, with approximately 3500 flexion range of motion is now within The patient had constant leg cc of aspirate removed. Short stretch normal limits and her LLIS score is discomfort and it became worse with compression bandaging was placed now 21 or 4%. standing, exercise, or performing even in the operating room at the end of the simple activities of daily living. She procedure by a surgical lymphedema Discussion was limited in the number of hours therapist. Following surgery, the that she could work and found it patient remained hospitalized for Patients, such as the one increasingly difficult to participate in two nights pursuant to the SAPL presented here, who have suffered family activities with her two young surgery protocol. Before the patient from lymphedema for a long period children. The volume of her leg was discharged from the hospital, of time usually present with a volume continued to increase slowly over time. the surgical lymphedema therapist excess that is solid predominant with Otherwise, the patient reported no replaced the short stretch compression some fluid component. Therefore, other relevant past medical history. bandaging with custom-fit, flat knit, treatment focused first on lymphedema compression garments ordered prior to therapy to treat and remove the On initial presentation, her surgery. Before discharge, the patient excess fluid component. Weight lymphedema was characterized by demonstrated that she was able to reduction also likely reduced the solid predominantly solid volume excess. care for her leg and able to remove component. In this case, reduction of Her left leg had a volume excess of and replace her compression garment. 5079 cc compared to the unaffected Figure 2 Sample of lymphedema right leg and pitting was minimal. The After one week, the patient aspirate removed patient’s knee range of motion was returned to her home lymphedema from left leg limited to 90 degrees of flexion. She therapist for further lymphedema during SAPL was given the Lymphedema Life therapy. As the postoperative swelling procedure Impact Scale (LLIS) questionnaire reduced, the compression garments (reference) and she scored a 58 on a were also remade to accommodate the scale of 18 to 90, which calculated smaller leg circumferences. to 56% functional, physical and psychosocial impairments. At five weeks after surgery, the volume excess in the patient’s leg had reduced to 433 cc, and further reduced

10 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 the fluid component plus initial weight loss reduced approximately 41% of the initial volume excess. Additional reductions in volume excess would have been limited without the surgical removal of the excess solids with the SAPL procedure.

Overall, the patient’s goals and expectations have been met or exceeded. Her excess volume reduction is 109% and her function and her psychosocial well- being have improved. Close integration of appropriately aggressive lymphedema therapy, bandaging, and custom-fit compression garment use by a trained lymphedema therapist together with Figure 1 Both legs prior to surgery continued downsizing of the custom-fit garments were essential to achieving the patient’s excellent outcome. The requirement for continued compression following surgery - first to remove the postoperative edema and then to prevent lymph fluid accumulation - is standard for the SAPL surgery. She will be a candidate for a second stage physiologic procedure, such as a vascularized lymph node transfer (VLNT) or lymphaticovenous anastomosis (LVA) surgery in the future to decrease the future need for compression use.

[email protected] Figure 3 Both legs 4 months following SAPL procedure for left leg

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October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 11 CASE STUDY 2

Vascularized Lymph Node Transfer (VLNT) with Deep Inferior Epigastric Perforator (DIEP) Flap Breast Reconstruction for Treatment of Right Arm Lymphedema

By: Jay W. Granzow, MD, MPH, FACS Associate Professor of Surgery, UCLA Division of Plastic Surgery, Manhattan Beach, CA

The patient is a 45-year-old her forearm that extended from the Surgical treatment consisted of woman with a history of right arm forearm to axilla. She had no history debridement and release of the scar lymphedema following treatment for of cellulitis and required lymphedema and soft tissue cord in the right axilla, breast cancer. Treatment included six therapy at least two times per month for removal of the adherent inferior chest cycles of chemotherapy, followed by one hour each session. wall skin, and removal of the left tissue bilateral skin-sparing mastectomy with expander. Left breast reconstruction right axillary lymph node dissection. Other past medical history included was performed with a left abdominal Immediate breast reconstruction with hypothyroidism and thalassemia deep inferior epigastric perforator (DIEP) bilateral tissue expander placement trait. She had no bleeding issues flap. Right breast reconstruction and was performed at the time of the related to her previous procedures. right axillary lymph node reconstruction mastectomies. She was then treated Past surgical history included uterine were performed with a right combined with radiation therapy to the right chest myomectomy per low transverse DIEP/VLNT flap. Five months after the wall and axilla that was completed incision, laparoscopic appendectomy initial surgery, a planned, second stage approximately three months after the and hysterectomy/removal of tubes and breast reconstruction procedure for initial surgery. ovaries. Medications included daily revision of the abdominal donor site Aromasin and baby aspirin, which were and breast reconstruction flaps with left After the initial healing was stopped before surgical treatment. nipple reconstruction was performed. complete, the patient developed a Since the right breast reconstruction cellulitis infection in the right breast On initial presentation, her result was smaller than the left due requiring eventual removal of the radiated right chest wall skin was to the need for right chest wall skin right tissue expander. The left tissue discolored, irregular in contour and removal, additional volume was added expander was left in place. Eventually, closely adherent to the chest wall. with fat grafting from the hips and flanks she also had cellulitis on the left side The left breast skin was soft with the as part of the right breast revision for but this was treated with antibiotics and initially placed tissue expander in good the tissue expander was saved. position. A well-healed, low transverse abdominal incision was present from Approximately three months after the previous abdominal procedures completion of the radiation therapy, along with multiple small scars from the the patient began to notice swelling in laparoscopic access points. her right arm. Fortunately, the patient’s primary care physician had ordered a The right arm was only minimally right arm compression garment as a larger than the unaffected left arm. A Figure 1 Preoperative views of arms and chest precaution. She was diagnosed with firm cord of soft tissue was clearly wall. The right arm has only mild swelling. The lymphedema and referred to a certified palpable under the skin extending from right chest has significant deformity due to loss of previous tissue expander from infection and lymphedema therapist. the forearm to the axilla and she had radiation therapy. discomfort with shoulder movement Lymphedema treatment included with shoulder flexion and abduction a complete course of CDT including decreased from 180 to 140 degrees. bandaging, MLD, and compression No significant pitting was present. garment placement. Initially, the lymphedema responded well but the Preoperative goals included patient needed to wear a circular knit, reconstruction of bilateral breasts, 30 to 40 mm compression garment reduction of the need for compression every day to keep the symptoms from garment use and lymphedema therapy, Figure 2 Postoperative views 20 months after returning. She wore no garment at night improvement of shoulder motion and left DIEP flap and right DIEP/VLNT and planned and performed bandaging only when release of the subcutaneous cord. second stage revision of breast reconstructions and flying. She did develop a stiff cord in abdomen. 12 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 symmetry. Right nipple reconstruction procedures were performed with less surgery allowed for placement of is planned in the future. invasive approaches. A standard the transferred lymph nodes prior to appendectomy approach may have atrophy and sclerosis of the affected Both breast reconstructions have precluded a combined DIEP/VLNT arm’s remaining lymph channels and excellent shape and symmetry, and the flap. In those situations, a two-step further progression of the lymphedema abdomen has significantly improved procedure may be considered, with a disease process. The transferred shape and contour. Following the initial VLNT performed first and a bilateral lymph nodes continue to be effective in procedure, the patient progressively DIEP performed two or more months clearance of lymph fluid. This greatly decreased the use of the compression thereafter. decreased the need for continuing garment. By six weeks, she was lymphedema therapy and eliminated the no longer using the garment daily Prompt diagnosis and treatment need for continuous daily compression and reserved its use only for more of the patient’s arm lymphedema by a garment use. She is still advised to strenuous activities such as cooking certified lymphedema therapist (CLT) continue compression garment use for long periods of time. The fibrous controlled the patient’s initial swelling during at-risk activities such as flying or subcutaneous band released during and prevented the accumulation gardening. surgery did not return. Her shoulder of excess lymphatic fluid and solid and elbow range of motion returned material. Prompt referral for VLNT [email protected] to normal at approximately 8 weeks after surgery. The patient did feel intermittent soft tissue fullness at the IMPROVING QUALITY OF LIFE, ONE PATIENT AT A TIME right elbow that spontaneously resolved without further treatment. At this time, she manages her lymphedema by performing self-MLD daily and wearing her garment when she exercises or travels. She has not required therapy from a CLT in a year. Just recently, she returned to check in with her lymphedema therapist to have a full MLD session after returning from a trip from the east coast.

Discussion

This case presents surgical treatment for both breast reconstruction and also lymphedema. The combined bilateral DIEP flap with right VLNT allowed simultaneous treatment of The most clinically proven option for patients with both issues with the same series of procedures. chronic swelling associated with lymphedema. • Clinically proven to reduce chronic swelling The state of the patient’s chest • Stimulates lymphatic function wall skin and the history of radiation • Improves adherence to therapy therapy required that any further breast • A better approach to at-home reconstruction be performed using the patient’s own tissue rather than a tissue self-management expander and/or implant. The abdomen is a preferred site for such tissue, and the patient’s excess abdominal skin and fat provided an excellent donor site. Advancing the standard The right nipple reconstruction was of care in treating chronic delayed to allow both revised breast diseases at home. reconstructions to settle to their final position to allow proper placement of A basic at-home self The only ambulatory device management treatment that that combines intermittent the nipple position. reduces swelling associated and sustained compression for with lymphedema. patients with venous leg ulcers. As in this case, a history of prior abdominal surgery does not necessarily preclude breast reconstruction with an abdominal soft tissue flap such as a DIEP flap. Fortunately, most of the patient’s previous abdominal

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October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 13 RESEARCH PERSPECTIVE

Barcelona Lymphedema Algorithm for Surgical Treatment (BLAST)

By: Jaume Masia, MD, PhD, María Miranda, MD, Gemma Pons, MD Department of Plastic Surgery, Hospital de la Santa Creu i Sant Pau (Universitat Autonoma de Barcelona), Barcelona, Spain.

Breast cancer related during the preoperative assessment uptake is found. When remaining lymphedema (BCRL) is a chronic because only a patient with lymph node functionality is found in the condition that affects quality of functioning lymphatic channels can axilla the cubital fossa or the wrist can life, a prevalence of 21% has been be considered a potential candidate be used as receptor areas for VLNT. reported to occur on breast cancer for reconstructive lymphedema CT scan is obtained when a VLNT is patients[1]. Currently, there are several surgery. ICG lymphography is also indicated and it is used to evaluate conservative and surgical options used to evaluate the anatomical the lymph nodes at inguinal donor of treatment for lymphedema, the distribution of the lymph channels and area. We select the most cranial and latter include reconstructive and the existence of superficial collateral lateral inguinal nodes to diminish the palliative (liposuction) procedures. The pathways, that information is highly risk of secondary donor site morbidity indications for each procedure are variable between patients and the and because this area has rich the cornerstone to achieve positive presence of collateral lymphatic vascularization from the superficial outcomes. We will review in this circulation would be a protective epigastric system or the superficial paper the indications included in the factor against lymphedema[6]. ICG circumflex iliac system. Barcelona Lymphedema Algorithm lymphography is performed in the for Surgical Treatment (BLAST) that outpatient clinic during the first When the lymphatic channels we have established for liposuction consultation and depending on the are still functioning, we perform the and for the reconstructive procedures results lymphoscintigraphy (LS), Combined Surgical Treatment (CST), (vascularized lymph node transfers magnetic resonance lymphography which includes LVA and VLNT or LVA (VLNT)[2] and lymphatico-venular (MRL) and computed tomography (CT) only. When the patient requires breast anastomosis (LVA)[3]) that we perform in angiography might be required. reconstruction and a reconstructive our center. surgical treatment for lymphedema ICG lymphography permits a we use a combined DIEP/SIEA A detailed medical history and maximum depth of study of 1 cm flap with groin VLNT with double clinical examination are essential from the surface and for that reason vascularization. We anastomose to determine the lymphedema in advanced cases with important fat the inferior epigastric vessels to the stage according to the International hypertrophy, diffuse dermal backflow internal mammary vessels according Society of Lymphedema (ISL) which or in obese patients in which we to our standard breast reconstruction is an indicator of the severity of the need to study the deeper tissues, protocol. To provide an adequate disease[4]. Following an accurate MRL complements the information vascularization for the transferred clinical evaluation, the main provided by ICG lymphography. MRL lymph nodes in all the patients information required to individualize is performed using a gadolinium- receiving a VLNT, we anastomose the the surgical treatment is to evaluate based contrast. At predetermined superficial epigastric system or the the remaining functionality and the points along a reference line marked superficial circumflex iliac system from morphology of the lymphatic system from the acromion to the nail of the the groin VLNT to axillary vessels other of each patient. For that purpose we thumb, passing through the central than the thoracodorsal vessels. perform a preoperative assessment point of the cubital fossa, hyperintense using imaging techniques. markers are placed on the skin surface We have found that patients with to map the lymphatic channels. medial predominant drainage without Indocyanine green (ICG) Mapping is facilitated by 3D MRL. The collateral dorsal vessels or with less fluorescence lymphography is of combination of ICG lymphography than 6 lymphatic channels after paramount importance since it allows and MRL provide information to mastectomy and axillary dissection are us to evaluate the function of the identify the lymphatic channels with more likely to develop lymphedema. lymphatic system[5]. Immediately adequate anatomical and functional In these patients we propose the after injection of the ICG dye we characteristics for successful LVA. concept of Total Breast Anatomy can observe the contrast ascending MRL also allows imaging of the deep Restoration (TBAR) as a preventive towards the axilla that is an indicator lymphatic system. [7]. procedure. For TBAR, we perform of a preserved contractility, and few immediate breast reconstruction minutes later we can determine the Lymphoscintigraphy is used to accompanied by lymph-lymphatic presence of dermal back flow. This support the indication of VLNT to the anastomosis between the stumps information is of crucial importance axilla when absence of axillary tracer of the upper limb lymphatic vessels 14 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 remaining after lymph node dissection second period of time as described surgical procedures only in patients and the afferent vessels from below. who had a remaining functionality transplanted lymph nodes. of the lymphatic system determined From June 2007 to December by ICG lymphography. From the 94 In later stages of lymphedema, 2011, the indication for lymphedema patients who received a surgical when no remaining lymph channel surgery was clinical and all the 106 treatment for lymphedema in that function is observed, we opt for patients with stage I and II BCRL period of time only 44.7 % of the lympho-liposuction to reduce according to the ISL criteria that we patients received reconstructive hypertrophic adipose and fibrous treated in our department received techniques, 22 patients underwent tissue using a technique similar to that a reconstructive surgical treatment. LVA, 16 patients TBAR and 4 patients previously described by Brorson. [8]. Fifty nine patients were treated with a CST. Finally 52 patients underwent LVA, 7 patients with VLNT, and 40 lymph-liposuction. The rate of Reverse lymphatic mapping patients with both. Preoperative versus preoperative versus postoperative postoperative excess circumference excess circumference decreased In order to reduce the risk of was reduced between 12% and between 42 and 89.6% (average causing a lower limb lymphedema at 86.7% (average 39.72%) while the arm 64.2%), while the circumference of the donor site, ICG-lymphography is circumference decreased between 0.9 the arm diminished from 2.9 – 6.1 cm used for the reverse mapping of the and 6.1 cm (average 2.75 cm). Ninety- (average 3.85 cm). All patients reported lymph node drainage of the donor eight patients had a perceived a perceived objective improvement. lower limb when performing groin improvement, while 8 patients did not lymph node transfers isolated or in report any significant changes[9]. If we Summary combination with breast reconstruction assess these results carefully looking with an abdominal flap. It helps us for an objective improvement, we The BLAST has been proposed to differentiate intraoperatively the realize that an excess circumference based on the results we have obtained lymph nodes that drain the donor reduction of less than 20% or the after years of experience treating lower limb from the superficial lymph perceived improvement that the patients with lymphedema and its nodes that we can harvest. Also, patients report of their quality of life main purpose is to individualize before raising the vascularized lymph (less heaviness, pain relief) are not the treatment of the patients with node flap, before incising the skin, we always a consequence of the surgery. lymphedema. Detailed clinical and inject patent blue V dye intradermally It could be due to an increased imaging preoperative assessment above and below the inguinal fold in awareness of the patients of the should be performed to determine the potential drainage area to visualize disease and the general care that the most suitable surgery depending better the superficial lymphatic vessels postoperative period under the control on the functionality of the lymphatic during dissection. of the surgeon requires, because system. Only the patients with a similar outcomes have been reported residual lymphatic functionality Our Results when only conservative treatments would benefit from reconstructive are provided. From our first group, options while for patients with The management of lymphedema in only 46 patients we could find a advanced lymphedema and failure in our department can be divided in perimeter reduction over 20%, which of the lymphatic system a reductive two periods of time depending on might be attributed to the surgery. technique is more appropriate. the indications for reconstructive lymphedema surgery we used. The From June 2012 until June 2014, [email protected] outcomes clearly improved in the we started to use reconstructive References available in online version

BCN Lymphedema Algorithm for Surgical Treatment -­‐ BLAST

Clinical assessment ICG-­‐lymphography Lymphoscin1graphy MR-­‐lymphography

Func3onal Non-­‐func3onal lympha3c lympha3c system system

Reduc1ve surgical Non-­‐impaired treatments Impaired axilla axilla Power-­‐assisted lympho-­‐liposuc3on

No amas1a Amas1a LVA LNT + LVA T-­‐BAR

October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 15 The National Lymphedema Network’s 12th International Conference August 31- September 4, 2016 Omni Dallas Hotel, Dallas TX FOUR AND A HALF DAY INTENSIVE EDUCATIONAL PROGRAM FOR HEALTHCARE PROFESSIONALS FEATURING STATE-OF-THE-ART EXHIBITIONS, LECTURES AND POSTERS

Pre-Conference and full day Instructional Sessions including: • Lipedema: Research and Clinical Management • Comprehensive Lymphedema Measurement and Tools • Food for Thought: Nutritional Considerations for Lymphedema • Fighting Global Filariasis One Patient at a Time

Registration opens October 15, 2015 | Abstract Submissions Start: January 1, 2016 Exhibit & Support Opportunities Now Available: ONLINE or 415.908.3681 www.lymphnet.org | [email protected]

FOR HOTEL RESERVATIONS, CALL 1-800-843-6664 Use NLN Group Rates CME is Pending

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BSN Medical Tactile Medical Resource Guide ~ 1 Resource Guide Vol. 28, No. 4 October-December 2015

IMPORTANT DISCLAIMER: The following LE Therapist Training Programs listing constitutes neither an accreditation nor an endorsement by the NLN or the NLN Med­ Academy of Lymphatic Studies [A] Klose Training & Consulting [G] ical Advisory Committee. Currently, there are Home Office: Sebastian, FL Home Office: Lafayette, CO no government-recognized national stand­­ards Telephone: 800-863-5935 Telephone: 866-621-7888 for treatment of lymphedema or accreditation­ of lymphedema training courses. There­fore, 772-589-3355 Telephone: 303-245-0333 a certificate received from any lymph­edema Fax: 772-589-0306 Fax: 303-245-0334 training program in the U.S. represents­ only a Email: [email protected] Email: [email protected] certification of attendance and completion of Website: www.acols.com Website: www.klosetraining.com that particular course. Director: Joachim E. Zuther, CI, Director: Guenter Klose, CI, CLT-LANA LISTING GUIDELINES: In 2001, the MLD/CDT Medical Director: Kathleen Francis, MD Lymphology Association of North America Course Length: 135+ hours, 9 days Course Length: 135 hours, 9 days (LANA) was founded to establish minimum Classes Held: Across the U.S. Classes Held: Across the U.S. competency standards for lymphedema Student Codes: MD,RN,PT,PTA,PA,OT, Student Codes: MD,RN,PT,PTA,PA,OT, therapists and provide a national standard­ MT,OTA,AT OTA,MT ized certification examination (CLT-LANA). Program Codes: C,P,A Program Codes: C,P,A This examination is available twice annually. Preliminary minimum standards have been CASLEY-SMITH COURSES IN THE U.S. Monarch Continuing Education [M] set by LANA, and the NLN has adopted Home Office: Christiansburg, VA Boris-Lasinski School [B] them for qualification of training programs, Telephone: 540-357-2084 Home Office: Greenlawn, NY treatment centers and therapists in the Fax: 540-301-0750 United States. As of November 1, 2002, Telephone: 516-364-2200 Email: [email protected] the NLN requires lymphedema training pro­ Fax: 516-364-1844 Website: www.monarchce.com grams to offer a minimum of 135 hours of Email: [email protected] 1 2 Director: Carmen Thompson, B.S., intensive training ( /3 theoretical, /3 practical) Website: www.lymphedema-therapy.com CLT-LANA in order to qualify for a listing in the NLN Director: Bonnie B. Lasinski, PT, Resource Guide (referred to as Sponsor­ Medical Director: Harry McCoy, MD MA, CI, CLT-LANA ship). Lymphedema therapists (indepen­ Course Length: 135 hours, 9 days Medical Director: Marvin Boris, MD dents) must have completed a recognized Classes Held: Across the U.S. Course Length: 135 hours, 14 days 135-hour training program, and treatment Student Codes: RN,PT,PTA,OT,OTA,MT centers must have on staff at least one Classes Held: Across the U.S. Program Codes: C,P,A lymphedema therapist who has completed Student Codes: MD,RN,PT,PTA,OT,OTA,MT such a program. Program Codes: C,P,A The Norton School of Lymphatic Therapy [N] PLEASE READ: This list is offered to our Dr. Vodder School International [V] members for reference only. Although we Home Office: Jamesburg, NJ Home Office: Victoria, BC, Canada do interview/review applications from each Telephone: 866-445-9674 Telephone: 250-598-9862 or individual and facility, the NLN is not respon­ Telephone: 732-290-2888 800-522-9862 sible for quality of service or rates charged. Fax: 732-290-2278 Therapists vary in experience, expertise Fax: 250-598-9841 Email: [email protected] and skill, and you are encouraged to inquire Email: [email protected] Website: www.nortonschool.com about training, background, fees for service, Website: www.vodderschool.com Director: Steve Norton, CLT-LANA and to verify coverage with your insurance Director: Robert Harris, HND, Medical Director: Andrea Cheville, MD company prior to treatment. And, as when RMT, CLT-LANA making any medical decision, research your Course Length: 135 hours, 9 days Medical Director: Christine Heim, MD options, ask questions, then decide on the Classes Held: Across the U.S. Course Length: 160 hours, 20 days best course of treatment for you. Student Codes: MD,RN,PT,PTA,OT, Classes Held: Across U.S. & Canada NOTE: The NLN Resource Guide includes OTA,MT,S only NLN sponsoring facilities/clinicians. Student Codes: MD,RN,PT,PTA,PA,OT, Program Codes: C,P,A Each sponsor has submitted detailed infor­ OTA,MT,N,ATC,NT,NP mation about their facility/practice including a Program Codes: C,P,A questionnaire, copies of professional licenses/ certificates, and paid a fee to be listed. This International Lymphedema & list does not represent all centers/clinicians Wound Care Training Institute [W] currently in practice in the U.S. Home Office: Senoia, GA Telephone: 715-699-4434 Email: [email protected] Website: www.ILWTI.com This Resource Guide is composed of the Course Length: 188 hours, 6 days next eight pages which have been printed Classes Held: Across the U.S. as a pull-out. They can be removed from Student Codes: MD,RN NP,PT,PTA, the center of your LymphLink and kept near your phone for easy access. PA,OT,OTA Program Codes: C,P,A October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 17 2 ~ Resource Guide Resource Guide Legend Diagnostic Centers ARKANSAS The following codes appear in the Treatment University of Arizona Medical Ctr Arkansas Lymphedema and Therapy Center and Manual Lymphatic Drainage with Healthsouth Rehabilitation Providers [1G,1A,2t] North Little Rock Therapist listings. Codes indicate the school Institute of Tucson Tucson, AZ Troy Alberson, MSPT,CLT-LANA 501-772-3224 attended by each on-staff therapist. If school attended by a ther­apist is not an NLN-Spon­ Marlys H. Witte, MD CALIFORNIA soring Training Course, only an asterisk (*) will Michael J. Bernas, MS 520-626-6118 appear in the listing, indicating that no infor­ City of Hope National Medical Ctr mation has been provided. See the Training [2G,3*,3t] Duarte Course column for program descriptions. Treatment/ Jennifer Hayter, MA,OTR/L,CLT-LANA A = Academy Of Lymphatic Studies Diagnostic Centers 626-256-4673 x 62412 B = Boris-Lasinski School, Lymphedema Ctr [1*] Santa Monica, CA TAG Physical Therapy Casley-Smith U.S. Affiliate Emily Iker, MD 310-829-7472 [1N,1V] El Segundo G = Klose Training & Consulting NorthShore University Health System Cathy Tarte, PT,OCS M = Monarch Continuing Education [5A,5G,1LL,4N,2*,10t] Evanston, IL Richelle Drake, CLT 310-426-9570 (formerly Lymphedema Care Specialists, LLC) Joseph Feldman, MD, CLT-LANA 847-570-2066 Saint Agnes Cancer Center N = The Norton School of Spectrum Health Lymphedema Lymphedema Program Lymphatic Therapy Program [3A] Grand Rapids, MI [1A, 1t] Fresno S = Complex Lymphatic Therapy Richard Hodgson, MD Denise L. Ketcham, PT,CLT-LANA Courses, Casley-Smith US Affiliate Sally Klenk, PT 616-468-6800 559-450-5500 V = Dr. Vodder School–North America National Lymphedema Center W = International Lymphedema & Physicians [1G,2N,1t] Manhattan Beach Wound Care Training Institute Julie M. Soderberg,MPT,ATC,CSCS,CLT-LANA Jay W. Granzow, MD, MPH, FACS t = CLT/LANA Certified Shayla Storz 310-882-6261 Plastic & Reconstructive Surgery Providence Holy Cross Medical Ctr SPECIAL NOTE: Manhattan Beach, CA 310-882-6261 Training Programs no longer in existence: [1N,1*,1A,1t] Mission Hills C = Casley-Smith School Nancy A. Hutchison, MD,CLT-LANA [G/t] JoAnne Shahnazi, OTR/CLT-LANA 818-898-4529 I = Lymph Drainage Therapy ~ Physical Medicine and Rehabilitation Kathy Caplan, RPT/CLT 661-288-5925 Upledger Institute Minneapolis, MN 612-863-2123 Hoag Memorial Hospital Presbyterian K = Kessler Lerner LE Academy or 612-863-8947 [1A,3N,1t] Newport Beach LL= Lerner LE Services Academy Treatment Centers Leslie Craner, PT, CLT T = The Lymphedema Consultants Anita Swigart, PT 949-764-5676 ALABAMA St. Joseph Hospital, Lymphedema TRAINING PROGRAM HealthSouth Lakeshore Rehabilitation Center [1A,1C,1LL,2N] Orange LEGEND Hosp [1A,5*,5t] Birmingham Jeanne Fahring, PT, CLT 714-734-6288 Cheryl Pierce, OT, CLT-LANA Casa Colina Centers for Program Codes Nancy McCracken, PT,CLT-LANA 205-868-2290 (indicate what is covered in the program) Rehabilitation [5N,1t] Pomona Kathy San Martino, PT,CLT-LANA C = Complete Program (Manual Lymph ARIZONA Drainage, bandaging, garment review, CORAL (Center for Oncological Debbie Huskey, PT,CLT 909-596-7733 x3660 exercise, diet/nutrition, self care, skin Rehabilitation and Lymphedema) care) Motion Recovery Physical Therapy, [3G,1t] Phoenix Inc. [3A,1G,1t] Sacramento P = Use of pumps reviewed Natalie Fogelson, PT, MSPT, CLT-LANA Amy Flinn, PT, CLT-LANA A = Additional types of compression garments/devices reviewed 623-580-9323 Angela Blaikie, PT, CLT 916-649-0700 Yavapai Regional Medical Center Sharp Rehabilitation Center Student Codes [1C,1*,1t] Prescott [2V] San Diego (indicate who is eligible to attend the course) Donna Hannah, OTR/L,CLT-LANA 928-771-5131 Carol Long OTR/L, CLT MD = Doctor HealthSouth Scottsdale Rehabilitation Samantha Colleran OTR/L,CLT 858-939-3938 RN = Nurse Hospital Lymphedema Treatment St. Mary’s Medical Center Outpatient NP = Nurse Practitioner Program [1S,1G,LANA] Scottsdale Therapies [2A,1G] San Francisco PT = Physical Therapists Andrea Brennan, OTR/L,CLT-LANA,DAPWCA Fiona McCusker, PT 415-750-5900 PTA = Physical Therapist Assistant Emma Casey PT, CLT 480-551-5454 Eden Medical Center for Outpatient PA = Physician Assistant or 480-551-5436 Rehab Services OT = Occupational Therapists Lymphedema Treatment Center at [1A,1V,1t] San Leandro OTA = Occupational Therapist Assistant Honor Health Marina Aquino Villarey, OTR/L,CLT 510-727-3178 MT = Massage Therapists [1A,1N,2t] Scottsdale Central Coast Lymphedema ATC = Athletic Trainers Certified Christy Kim, PT,CLT-LANA 480-323-1100 Therapy [1A,1G,2t] San Luis Obispo (Note: Massage therapists should contact Leslyn Keith, MS,OTR/L,CLT-LANA 805-782-9300 the school for minimum practical hours and San Ramon Regional Medical Center experience required to attend this course.) [1V] San Ramon 18 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 Lisa Berman, MS, PT Nicole Midtlyng, PT 925-275-8442 Resource Guide ~ 3 Dominican Lymphedema Management Northwest Medical Outpatient Rehab Elmhurst Memorial Healthcare Program [2A,2G,3N,1S,1t] Santa Cruz [1A,1V,1t] Margate [2A,2G,2t] Elmhurst Karen Ashforth, MS,OT,CLT-LANA 831-457-7082 Cathy Kleinman-Barnett, MOTR/L,CLT-LANA, Janet Benedict PT,CLT-LANA Central Physical Therapy 954-978-4180 Deanna David PT,CLT-LANA 331-221-6044 [1A, 1 LANA] Stockton Wuesthoff Rehab Services Northshore University HealthSystem Frederick “Chip” Hanker, PT, MPT 209-473-2383 [7A,1N,2t] Melbourne/Rockledge [5A,5G,1LL,4N,2*,10t] Evanston Virtu Arora 805-788-0805 Adam F. Rhoads, PT 321-752-1500 Joseph Feldman, MD,CLT-LANA 847-570-2066 Conejo Valley Physical Therapy and or 321-433-0288 Northwestern Medicine-Delnor Lymphedema Center Therapy For You Lymphedema Clinic [3G,1V,2t] Geneva [2A] Thousand Oaks [1A,2N] Ocala/Lady Lake Christine Wietrzykowski, MHS,PT,CLT-LANA Jennifer Vonarb, MPT, CLT Meenu Jethwani, OTR/L, CLT 352-237-0073 630-208-4592 Tessa Waggoner, MS, PT, CLT 805-497-9300 352-391-9500 Torrance Memorial Medical Center Ingalls Hospital [3G,1N,1*,1t] Harvey [1N,1V,2t] Torrance St. Lucie Medical Ctr Lymphedema Sandy Collins, PT,CLT-LANA 708-915-8465 t Sheryl Au, PT 310-517-4665 Clinic [3A, 1N, 3 ] Port St. Lucie Loyola Center for Rehabilitation Pamela Bayliss, CLT-LANA 772-398-1928 Coastal Community CA Center [4A,1*,2t] Maywood & Oakbrook Lymphedema Program Tiffany Heisler PT, CLT-LANA 772-398-1999 Julie K. Nelson, PT,DPT,CLT [2G,1t] Ventura Healing The Generations, Inc. Elizabeth Russell PT 708-216-5300 x2 Claudia Steele-Major, PT, CLT 805-652-5612 [2A] St. Petersburg, Clearwater & Tampa Palos Community Hospital Dawn Meiklejohn, OTR/L,CLT 805-658-5459 Nadine Verdebout, PT [4G, 1N, 1t] Palos Heights Wouter Vanderhorst, PT 727-535-6746 COLORADO Caroline Leflar, PT,CLT Space Coast Lymphedema Clinic Alicia Ferguson, PT,CLT-LANA 708-923-5050 Memorial Hospital, University of CO [2A,1t] Viera [1G,1N,1*,2t] Colorado Springs Swedish American Health System, Rosanne Bessenaire PT,CLT-LANA Outpatient Therapy Services Brad Chewakin Marcia Jeddrie OTR/L, CLT 321-241-6543 Kim Duncan 719-365-5642 [2A, 1G, 1N, 3t] Rockford Florida Hospital Zephyrhills Janet Davis, PT,CLT-LANA Health Ctr of Integrated Therapies & [2A,1N] Zephyrhills Jennifer L. Wuori, PT,CLT-LANA 815-489-4590 Physical Med Department Evelyn Lopez, OTR Midwest Rehabilitation [2G,2V,2t] Longmont Nasly Benavides, PT 813-783-6154 Karen Martin, RMT, CLT-LANA 303-651-5188 Services, Ltd. [2V,2t] Woodridge Jodi Winicour, PT, CLT-LANA 303-485-4163 GEORGIA Surekha Bhangare, PT, CLT 630-910-8480 Northside Hospital (Atlanta, Forsyth, CONNECTICUT INDIANA Cherokee, Alpharetta) Franciscan Alliance: St. Elizabeth Rehabilitation Associates, Inc. [3A, 1N, 1S] Atlanta Central [2A, 1G, 1N, 2 LANA] Lafayette [2A,1V,2t] Fairfield Andrew Wasely, PT, 404-236-8030 Regina R. Pilotte, OT 765-423-6885 Jan Hollerbach, MA,OTR/L,CLT 203-384-8681 Gillian Wolfson, PT 770-844-3650 Tricia Warner OT,CLT-LANA 203-922-1773 Bradley Whiteside Rehabilitation Saint Joseph Regional Medical [1A,1t] Dalton Center Outpatient Therapy Greenwich Hospital Margaret Seacrest, PT,CLT-LANA 706-272-6199 [2G,1N, 1t] Mishawaka/Plymouth [2A,1N] Greenwich Joanne M. Hartman, PT,CLT 574-335-6212 St. Joseph - Candler Hospital Janet Freedman, MD 203-863-4290 [1A,1t] Savannah Heather Leigh Studwell, MS,OTR/L IOWA Mary Couquet Felchlin, CLT-LANA,COTA/L,BA 203-863-3291 Methodist Jennie Edmundson 912-819-8822 Lymphedema Center [1S,1t] Middlesex Hospital - Physical The Rehabilitation Institute at Memorial Council Bluffs Rehabilitation Center Health [2A,2t] Savannah & Pooler Mary-Ellen Bartels, PT,CLT-LANA 712-396-6025 [4N,1*] Middletown & Essex Corie Michelle Turley, PT,CLT-LANA Michelle Aafedt, MS, OTR/L 860-358-2700 Cheryl Lynn Armstrong, OTR/L,CLT-LANA Genesis Cancer Center - Oncology 860-358-3970 912-350-7128 Rehab and Lymphedema [3*] Davenport Norwalk Hospital Rehabilitation HAWAII Services [2G] Norwalk Christine H. Beuthin, PT, DPT, GCS Kapi’olani Women’s Center Diana Rich, PT 203-852-3400 Sarah Mullins, PTA, CLT 563-421-1470 [1N, 1t] Honolulu Lymphedema Clinic, Iowa Methodist The Stamford Hosp Outpatient Nicole Tramontano, DPT,CLT-LANA 808-527-2588 Rehab at Tully Health Ctr Medical Center [1K,2N,1S] Stamford ILLINOIS [2A,1G,1N,3t] Des Moines Nancy Fellows, PT, CLT-LANA Jennifer Rokicki, OT NovaCare Rehabilitation Kari Seivert, OTR/L, CLT-LANA 515-241-6839 Gina Aiello, PT 203-276-2660 [4N] Chicago, Mt. Prospect, Oak Park FLORIDA Karyn Holtz, PT 312-640-2473 Thomas Rosinski, PT 847-398-1775 Aventura Hospital and Medical Center [1A] Aventura Trudy Ferguson-Pitters, RPT,CLT,MHSA October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 19 305-937-5802 4 ~ Resource Guide KENTUCKY Lakeland Health Care – Lymphedema NEW HAMPSHIRE Services [1A,1G,4N,3t] St. Joseph St. Elizabeth Medical Ctr Southern New Hampshire Leann Jewwel, MS,PT,CLT-LANA [1A,1G,1*,3t] Edgewood Rehab Ctr [1A,3K] Nashua 269-983-8242 Lynne A. Daley, PT, CLT-LANA Amanda McCann, PT,CLT 603-577-8400 Teresa Ann Westendorf, PTA,CLT-LANA Munson Medical Center 859-301-2168 [3A,2G] Traverse City NEW JERSEY Baptist Health Louisville Lymphedema Deborah Maas Francis, PT CentraState Medical Center Kari Jo Speckman, PT 231-935-8600 Clinic [1A,1G,2I,2N,1t] Louisville [2G,6N,3t] Freehold Renee Elieff, OTR/L MINNESOTA Marinelle Japzon, PT,CLT-LANA 732-294-2700 Kathy Doelling, PT 502-897-8137 732-637-6316 HealthEast Vascular Ctr - Lymphedema Barnabas Health Ambulatory Care Norton Cancer Institute Lymphedema Program [1S, 1*, 1t] Maplewood

Program [4A] Louisville Sandra K. Rosenberg, MD 651-232-2550 Center LE Program Jenni Haynes, PT, CLT 502-394-6455 [2A,1N,1G] Livingston Courage Kenny Rehabilitation Institute Gwen Danhauer, OTR/L, CLT 502-629-4062 Rita Loew, OTR/L, CLT-LANA 973-322-7293 Lymphedema Program LOUISIANA [3A,26G,1N,4S,11t] Minneapolis Atlantic Rehabilitation Institute [2G, 2N, 2 LANA] Morristown Baton Rouge General Nancy A. Hutchison, MD,CLT-LANA Monica Heinen, PT, CLT-LANA 612-262-7900 Kathryn Ryans, PT, CLT-LANA [1A] Baton Rouge Medical Ctr Jean Paluck, PT 973-971-4429 Chris Perkins, LOTR 225-763-4050 Fairview Edema Treatment Ctrs

[9A,3G,4N,2S,1V,6t] Minneapolis MAINE Wyatt Rehabilitation – Physical Lisa Karrow, PT & Statewide Therapy & Lymphedema Services www.fairview.org Mid Coast Hospital [2A] Brunswick [1G,2N,2t] West Long Branch Lisa Clark, MS, OTR/L 207-373-6175 Mayo Clinic – Lymphedema Ctr Tracey Podolsky, MPT,CLT-LANA MARYLAND [6A,4G,3N,7t] Rochester Kristy Blair, DPT,CLT-LANA 732-222-8556 Andrea Cheville, MD Chesapeake Lymphedema Center Jenny Bradt, PT,CLT-LANA 507-266-8721 NEW YORK [2A] Bel Air MISSOURI Delmar Physical Therapy & Raymond Cooper, OT Lymphedema Treatment Ctr Anthony Malek, PT 410-838-5964 Ellis Fischel Cancer Rehab Center [1V] Albany [1N] Columbia Michele N. Keleher, MS,PT,CLT Adventist Healthcare Physical Health Genevieve Perso, PT,CLT,ALT 518-439-1485 and Rehabilitation Karen Wingert, DPT,CLT 573-882-8445 St. Peters Physical Therapy & [1A, 9G, 2N] Rockville Freeman Lymphedema Clinic Fitness [2A,1G,3t] Albany Jennifer Nulton, OT,CHT,CLT [1A, 1G, 2N, 1*] Joplin Heather Carangelo, PT, CLT-LANA Shiona Thompson, MOT,OTR/L,CLT Laura Linville, OTR/L 417-347-3737 Mary B. Ryan, PTA, CLT-LANA 518-475-1818 240-826-2160 Truman Medical Centers- Hospital Stony Brook University Hospital MASSACHUSETTS Hill [3N,2t] Kansas City [2LL,2N] East Setauket Karen Bock, PT, CWS, CLT-LANA Baystate Lymphedema Program Candiano Rienzie, DPT 631-444-4240 [1N] East Longmeadow 816-404-4325 Barry Rodstein, MD,MPH,CLT Missouri Baptist Medical Center Gold Standard Physical Michelle Procencher, OTR/L,CLT 413-794-1150 Outpatient Rehabilitation Therapy [1A,1t] New York City [1G, 8N] St. Louis Sandi Davis, PT,CLT-LANA 212-481-4022 Reliant Medical Group Lymphedema Mary Maranzana, OT,CLT 314-996-3500 Treatment Ctr [1G,3M] Worcester NYU Langone Medical Center/Rusk Michelle Wellen, PT,DPT,CLT Cox Health System Rehabilitation Joanna Donato, DPT,CLT 508-856-9510 [7G,1N,1A,3t] Springfield [1A,1N,1V,2t] New York City Jan Weiss, DHS, PT 417-269-5500 Laurie Kilmartin, PT, DPT, WCS, CLT-LANA MICHIGAN Alice Cornelison, PTA 417-269-5167 Olga Kalandova PT, MS 212-263-5601 University of Michigan Lymphedema MISSISSIPPI Memorial Sloan-Kettering Cancer Treatment Program Center [1A, 16N, 2t] New York City Baptist Lymphedema Clinic [1A,3G,3N] Ann Arbor Ting-Ting Kuo, PT,DPT,WCS,CLT Katherine Konosky, OT,CLT-LANA [2A,1t] Jackson 646-888-1900 734-936-7070 Ginger Stover PT,DPT,CLT ShechterCare [1G] New York City Mary Free Bed Rehabilitation Caroline O’Cain OT, CLT 601-974-6243 Cynthia J. Shechter, MA,OTR/L,CIMT,CLT-UE Hospital [3G] Grand Rapids NEVADA 212-421-1969 Jennifer McWain, PT John T. Mather Memorial Hospital - Betty Houtman 616-456-4842 Lymphatic Therapy [2A,1G,1N,1V,1t] Las Vegas Lymphedema Treatment Cent Spectrum Health Lymphedema Joanne M. Matz OT, CLT [6G,3N,3t] Port Jefferson Program [3A] Grand Rapids Shelley Bolor OT, CLT 702-367-6015 Lisa Malcomson, DPT 631-686-7648 Richard Hodgson, MD Sally Klenk, PT 616-468-6800 20 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 Resource Guide ~ 5 Lymphedema Therapy of Long Island New Leaf Physical & Massage Palmetto Health Baptist A Division of ProHEALTHCare Therapy, LLC Lymphedema Treatment Ctr [3B,2C,2*,2t] Woodbury [3G,3t] Portland [1G,1N,1V,3t] Columbia Bonnie Lasinski, MA,PT,CLT-LANA 516-364-2200 Chelsea Ana French, LMT Kel Jansen, OTR/L,CLT Mary Gramling, PT,CLT-LANA 503-318-7954 NORTH CAROLINA Marie McGowan, PT,CLT-LANA 803-296-5486 Providence Health System McLeod Health Lymphedema Carolinas Rehab–Main [1A,1G,1N,3t] Portland Treatment Ctr [4A,1LL,2t] Florence [1A,2V,2t] Charlotte Barbara E. Nicholson, PT, CLT-LANA Ashley Atkinson, OTR/L,CLT-LANA,WCC Vishwa Raj, MD Tracy Hulleman, PT, CLT-LANA 503-216-1822 843-777-2043 Elizabeth Koenig, OTR/L,CLT-LANA 704-355-0239 503-215-0264 TENNESSEE Cone Health Outpatient Rehab PENNSYLVANIA At Guilford College Siskin Hospital Lympehema Clinic Centers for Rehab Services [4A] Chattanooga [1G, 3N] Greensboro [13G,1N,7t] Cranberry Twp Marti Smith, PT Kathy Clark, PTA,CLT 423-634-1200 Lisa Mager, MPT,CLT-LANA 724-742-9770 Donna Salisbury, PT,CLT 336-271-4940 Marino Therapy Centers [2A,1C,2t] Knoxville Frye Regional Medical Center - Doylestown Hospital Physical Kathleen Westbrook, PT,CLT-LANA Outpatiten Lymphedema Service Therapy [4N,3t] Doylestown Mona Dunlap, PT, MSPT,CLT-LANA Dianne Kerr PT, CLT-LANA 865-690-2671 [3A] Hickory Morgan Murphy, DPT 215-345-2892 or 865-558-6484 Tennisha Mitchell OTR/L,CLT Vanderbilt Lymphedema Therapy Deanna Foster OTR/L,CLT 828-315-3186 Keystone Physical Therapy- Erie Clinic [3A,1*,2t] Nashville [1G,1N] Caldwell Memorial Hospital Outpatient South Erie Jadranko Franjic, PT,CLT-LANA 615-343-7400 x1 Elizabeth Darling, DPT,CLT,ATC,OCS Rehabiitation Services [2A] Lenoir Adrien Mackenzie, PTA,CLT,LMT 615-343-7400 x2 Angela Smith, MS, OTR/L Amanda Scully, PT 814-860-7816 Sandy Cannon, OTA,CLT 828-757-6226 St. Mary Medical Center TEXAS [2G,5N,1t] North Cypress Medical Center OHIO Langhorne Brigette DiMarino, MS,OTR/L,CLT [1G,3N] Cypress Lymphedema Center at UH Geauga Laura Puglisi, MOTR/L,CLT 215-710-2424 Gretchen Sprouse, OTR/L, CLT Medical Center [2N] Chardon Pinnacle Health Physical Therapy Rene Schuster, OTRL/L, CLT 832-912-3791 Dotti A. Thompson, MOT,OTR/L,CLT of Camp Hill [2I,1N,2t] Lemoyne Allison Evans, OTR/L, CLT 440-214-3100 Texas Health Resources Dallas Donna Kubik, PTA, CLT-LANA 440-285-6889 [6V,1t] Dallas April Evanitsky, PTA,CLT-LANA,LMT Wendy O’Rear, PT,CLT 214-345-5204 Cleveland Clinic Vascular Medicine 717-214-3688 Vail Fassett OT,CLT-LANA 214-345-7133 [3A, 1N] Cleveland Leslie Gilbert, MD Fox Chase Cancer Ctr Memorial Hermann Lymphedema Douglas Joseph, DO 216-444-5710 [1G,3N,1*,3t] Philadelphia Center [3A,2N,3V,4t] Houston Wilma Morgan-Hazelwood, OTR/L,CLT-LANA MetroHealth Medical Center Laura M. Braxton, OTR,MSOT,CLT Janice G Buhler, MS,PT, CLT-LANA [2N] Cleveland Kirk Cowardbéy, OTD,MOT,OTR,CLT 215-728-2592 or 215-728-3469 Mary Vargo, MD 216-778-3397 713-704-5900 Penn Therapy and Fitness The Stefanie Spielman Covenant Hand Therapy [2A] Plano [4G,1V,4N,1LL,7t] Philadelphia/ Comprehensive Breast Center Gail Blom, MA,OTR,CLT,CHT 972-599-9594 Radner/Cherry Hill, NJ [6A,1G,1N,1*,4t] Columbus Joy C. Cohn, PT,CLT-LANA PVA Lymphedema Center Karen Hock,PT,MS,CLT-LANA 614-293-0043 Nicole Dugan, PT, CLT-LANA 215-662-4242 [1A,1V,1t] San Antonio Lima Memorial Health System Allegheny Chesapeake Physical Rachel McCabe OTR/L,CLT [1N] Lima Susan Harrelson, RMT,CLT-LANA Therapy [2G,1T] Pittsburgh Roberta Keenan, OTR/L 419-226-5045 210-237-4464 or 419-998-4704 Suzanne Cavanaugh, DMPT,CLT Kristen Carlin, PT 412-661-0400 H.O.P.E (Helping Out People with TuDor Physical Therapy Centers Edema) Lymphedema Treatment [2A,1T,1G] Youngstown Schuylkill Rehabilitation Ctr, PLLC [1G,1V] Sugar Land Gail DeMartino, PTA,CLT Center [2*] Pottsville Tammy Sweed, RMT, MLDT Laura Dye, PT,CLT 330-799-1680 Patricia Gregas, OTR/L Robin Poe, RN,MLDT 281-242-5807 OREGON Lynn Kamarousky, OTR/L 570-621-9500 UTAH Healing Spirit Integrative Health SOUTH CAROLINA Center [4N] Eugene Hilton Head Occupational Therapy Intermountain Lymphedema Carma Douglas, RN, CLT 541-683-1125 [1A,1t] Bluffton Clinic [1A,1N,1V,2t] Murray Rogue Regional Medical Center Madeline Chatlain, OTR/L,CLT-LANA Jennifer Girten, OTR/L,CLT-LANA 801-507-3967 [3A,1G,4t] Medford 843-757-9292 Sarah Anderson, OTR/L,CLT-LANA 801-507-3966 Janette Cariad, PT, CLT-LANA Connie Miller, PT,CLT-LANA 541-789-4255

October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 21 6 ~ Resource Guide VIRGINIA Teri Burk, PT,CLT-LANA [A/t] Nancy Hardy, OTR/L, CLT [G] Petaluma, CA 707-762-2939 Attleboro, MA 508-236-7380 St. Marys & St. Francis Lymphedema Management Center Mark D. Van Loan, MPT, CLT, MT [G] Melissa Basmaji, MOT, OTR/L, CLT [M] Redding, CA 530-241-1900 Framingham, MA 508-271-2075 [5A,1N,2t] Richmond/Midlothian Debora Chassé, DPT, WCS, CLT-LANA [G/t] Elizabeth Bareford, PT,CLT-LANA 804-281-8216 Kathleen M. Moniz, PT, CLT-LANA [G/t] Redlands, CA 909-307-0155 804-594-4979 North Falmouth, MA 508-564-5620 Belinda Torrez OTR/L, CLT-LANA [G/t] Lisa Clare Wick OTR/L, CLT [M] WASHINGTON San Diego, CA 858-676-1166. ext. 106 Worcester, MA 508-363-6805 Providence St. Peter Lisa Brinker, MA, CMT [V] Hospital [2G, 2N, 1t] Olympia San Francisco, CA 415-760-5982 Gail M. Johnson, MPT, CLT, RYT [G] Frederick, MD 866-727-3422 Vickie Parker, OTR, CLT Eileen Johnson, PT, CLT [V] 888-492-9480 ext 34159 Santa Monica, CA 310-998-1111 Theresa Catteron-Doherty, PT, CLT, LANA [G, LANA] Valley Medical Ctr – Rehab Services Gwen E. Tholkes, RN, CMLDT [G] SIlver Spring, MD 301-754-7340 Lymphedema Management Centennial, CO 303-601-9920 Kristin Rousseau PT, DPT, CLT [A] Program [1A, 2G, 2 LANA] Renton Erin D. Maranjian, NCMT,CLT-LANA [G/t] Bay City, MI 989-667-6600 Melissa Reed, PT,CLT-LANA Fort Collins, CO 970-218-1443 Ann Fox, PT, CLT-LANA [N/t] Julie Fulton, PT,CLT-LANA 425-251-5165 Rebecca Ann Bregar PTA, CLT [N] Grant, MI 616-951-1295 Pueblo, CO 719-546-0037 WEST VIRGINIA or 231-834-0208 Jane T. Reinsch, MA,PT,CLT-LANA [V/ t] Mon General Hospital Wound Healing Lisamarie Nash, LMT, CLT [N] Bloomfield, CT 860-242-8427 Center [1G] Morgantown Novi, MI 248-747-0268 Ellen Gordon Poage, ARNP, MPH, Lori Carpenter, RN Nancy Newman, LPN,LLCC [I] CLT-LANA [A/t] Erin Double, OTR/L, CLT 304-285-1460 Minneapolis, MN 612-990-6785 Fort Myers, FL 239-565-1802 WISCONSIN Shirley Kleinwachter, PT, CLT [N] Nancy Keeney Smith, LMT, MLD [A] Monticello, MN 763-295-6878 Wheaton Franciscan Healthcare - St. Gainesville, FL 352-316-0401 Joseph [1A,2G,1LL,2V, 2t] Milwaukee Sara J. Ellis, PT, CLT-LANA [S/t] Scottie Bull, PT, CLT-LANA [A/t] St. Cloud, MN 320-229-4922 Sharon Quinn OT 414-447-2315 Leesburg, FL 352-365-1114 386-837-9540 Antara Quinones [N] Missoula, MT 406-541-2606 MLD Therapists Christina M. Mitchell, LMT,PFT,MLD/CDP [M] Listed by State / Town / Therapist Naples, FL 239-293-0960 Emily Herndon, DPT, CLT-LANA [N/t] Plains, MT 406-826-4383 Anita Bakke LMT, CLT [G] Joyce Weiser, OTR/L, CLT-LANA [A/t] Lisa Clemens, MSRPT, CLT [N] Phoenix, AZ 623-223-1277 Port Charlotte, FL 941-764-1333 Arden, NC 828-684-3611 480-227-2426 or 941-276-1304 Wendy Urso, PT,CLT [A] Rebecca Hecox, PT-LANA, WCC [*/t] Kristin Heller, LMT, CLT [N] Sunrise, FL 954-616-1670 Manchester, NH 603-641-6700 Phoenix, AZ 623-866-2965 623-223-1277 Jennifer Beal, DPT,CLT-LANA [A/t] Ana L. Pozzoli, PT,CMLDT,CLT-LANA [K/t] West Palm Beach, FL 561-762-2322 Bloomfield, NJ 973-429-0890 Andrea Clark, MSPT, CLT-LANA [A/t] 561-688-1844 Albany, CA 510-847-1496 Patricia Kiernan, RN, LMT, CLT-LANA [N/t] Linwood, NJ 609-226-8353 Sandi Stephens McGriff, LMT,CLT,MLDT [A] Kimberly Murray, CMT, CLT-LANA [N/t] Atlanta & Jasper, GA 404-964-1072 Bakersfield, CA 661-477-1442 Carey Laney, OTR/L, CLT [N] Marlton, NJ 856-988-8700 Cherisse Sansone, PT,MLD/CDT [K] Gay Lee Gulbrandson, CLT-LANA, CMT, or 856-988-4128 Clayton, GA 706-782-2585 NCTMB, CAMTC [V/t] Judith Sedlak, PT,CLT [A] Berkeley, CA 510-849-1388 Jody Tucker, LMT,CLT-LANA [V/t] Mountainside, NJ 1-888-CHILDREN Glenview, IL 847-729-5644 Allyn Martinez, MA, OT, CLT-LANA [V/t] Marcia Neiberg Pallop, MPT, CLT [G] Dublin, CA 925-550-3532 Sharon M. Vogel LMT,CLT,BCTMB,LCOS,BS [A] Plainsboro, NJ 609-936-1666 Dana Wylie, CMT, HHP, CLT [N] Oswego, Downer’s Grover & Wheaton, IL Laura Dlholucky OTR, CHT, CLT [A] Encinitas, CA 858-888-3756 630-448-4823 West New York, NJ 973-330-1466 Gloria Creamer, PT, CLT [A] Amira F. Mohammed, PT,DPT,CLT [G] La Jolla, CA 858-551-8882 East Chicago, IN 219-397-7771 Kelli C. Anderson, OTR, CHT, CLT [N] 297-671-0729 Westwood, NJ 201-497-6211 Eleanor Ho, MPT, CLT-LANA [G/t] 201-259-7037 Los Alamitos, CA 562-795-5295 Vanessa Flora, PT,DPT,CLT-LANA [G/t] Indianapolis, IN 317-880-3464 Nancy Snellgrove, PT, CLT-LANA [G/t] Kimberly Vernier, PTA, CLT [A] Reno, NV 775-770-6805 Marysville, CA 530-749-4529 Amy Howad Connor, OTR,CHT,CLT [G] Earline Jackson, LPN,LMT,CMLDT [A] South Bend, IN 574-968-2851 Kim Marshall, PT,CLT [G] Cary, NC 919-677-0767 Orange, CA 714-547-1140 Julie Hanson, MD,FAAP,CLT-LANA [G/t] Elaine Dohms,CLT-LANA,MT,MA,NCTMB [N /t] Kathy Flippin, CMT, CMLDT [G] Dubuque, IA 563-584-3440 Maggie Valley, NC 828-944-0288 Orange County, CA 949-650-4240 or 714-354-7188 22 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 Resource Guide ~ 7 Brenda P. Fadeyibi, OTR/L, CLT [N] Steve Bjorn, DPT, CLT [A] New York, NY 212-421-1969 Bedford & Keller, TX 817-868-7575 Suppliers 817-337-3400 Nicole Psomas [N] (Listed Alphabetically) New York, NY 201-704-0075 Vail E. Fassett, MOTL,LMT,CLT-LANA [G/V/t] Dallas, TX 972-742-3580 Stephanie Dessi Kiley, OT,PC,CLT-LANA [N/t] Caring Touch Medical, Inc. Nationwide 410-308-8801 New York, NY 212-421-5505 Susan Levy, OTR,CLT-LANA [G/t] www.caringtouchmed.com Randee Zerner, OTR/L, CHT, CLT [N] Houston, TX 713-441-7406 Northport, NY 516-732-0081 FarrowMed, Inc. Martha L. Hamilton, PT, LMT, CLT-LANA [I/t] 631-339-1777 Nationwide & International 877-417-5187 McKinney & Allen, TX 903-227-5521 979-822-9120 Jodi Veeder, CLT [N] 469-854-8583 Schenectady, NY 518-382-8050, ext. 301 www.farrowmed.com Dr. Laurayne Hurst, PT, DPT, CLT-LANA [N/t] Christina Berry, MS, OTR/L,CLT-LANA [N,t] Nacogdoches, TX 936-569-6776 Impedimed, Inc. Southold, NY 631-765-8084 Nationwide 877-247-0111, Ext 2 Gail Blom, OTR, CLT [A] www.impedimed.com Pam Bebenroth PT, CLT [A] Plano, TX 972-599-9594 Independence, OH 216-931-1434 972-612-0958 Juzo Cuyahoga Falls, OH 888-255-1300 Elizabeth Hile, PT, PhD, NCS, CLT [N] t Leslie Forsyth, OTR, LMT, CLT-LANA [*/ ] www.juzousa.com Edmond, OK 405-271-7635 Plano, TX 972-633-0888 or 214-502-8988 Luna Medical Kathe Holtz, OTR/L,CLT [G] Nationwide 800-380-4339 Beaverton-Hillsboro, OR 971-255-3132 Breanne Riley, PT, DPT, CLT-LANA [G/t] www.lunamedical.com San Antonio, TX 210-372-9600 Laura Goold, OTR/L,CLT-LANA [G/V/t] Lymph Notes – Lymphedema Books Bend, OR 541-388-2681 Joshua Trock, PT, DPT, CLT, CEWS [G] San Antonio, TX 877-713-7878 Nationwide & International John F. Beckwith PT,CLT-LANA [A/t] 210-474-0037 www.lymphnotes.com Eugene, OR 541-222-2560 Tammy Lynn Bianco-Sweed, RMT/MLDT [V] LympheDIVAs LLC Debra Cox, LMT,MLD/CDT [V] Sugar Land, TX 281-242-5807 International 866-411-DIVA Portland, OR 503-830-9775 281-242-7187 www.lymphedivas.com 503-466-0581 Brenda MacLagan, LVN, RMT,CLT-LANA [*/t] Martin Medical, Inc. Dana Winrow, PT,CLT-LANA [A/t] Wichita Falls, TX 940-766-1515 Western Washington 425-462-5334 Doylestown, PA 215-407-1178 940-923-4297 www.martinmedicalinc.com

Julie Ackerman, LMT,CLT [V] Lori Dillman, OTR/L, CLT-LANA [N/t] medi USA / CircAid Jenkintown, PA 541-870-2334 Provo, UT 801-357-7540 Nationwide 800-845-6050 Lyn Garbarino [*] or 801-357-3455 www.mediusa.com Johnstown, PA 814-269-2224 Challice Carsey [G] North American Rehab Michael J. Sharr, DPT, CLT-LANA [A/t] Salt Lake City, UT 801-350-4593 Nationwide 800-845-6050 Mercer, PA 724-662-1776 Paula D. Levinson, PT, OCS, CLT-LANA [G/t] www.northamericanrehab.com Stacy Blaine, PT,MSPT,CLT-LANA [N/t] Arlington, VA 703-527-8446 Solaris Warrington, PA 267-893-9587 Brandi L. Puckett [M] United States and Nationwide 855-892-4140 414-892-4140 Bryan Spinelli, PT,MS,OCS,CLT-LANA [N/t] Floyd, VA 540-745-5005 www.solarismed.com Providence, RI 401-444-5418 276-779-5326 Solidea Medical Polly Jiacovelli, LMT,CLT-LANA [G,LL,V,t] Patrcia Mitchell, LPTA, CLT [A] Nationwide 888-841-8834 Providence, RI 401-383-0583 Lorton, VA 703-372-5716 703-924-2650 www.lscdistribution.com Scottie Ann Visser, LMT,CLT [N] Charleston, SC 843-754-5898 Rebecca J. Whittaker PT, DPT, CLT [N] Specialized Medical Solutions Richmond, VA 804-594-3460 San Antonio, TX 210-236-9824 Deborah Smith, OTR/L,CLT [N] Greenville, SC 864-286-8288 Stephanie Rondeau [A] www.specializedmed.us Williamsburg, VA 757-565-3400 Lori Anderson MSPT,CLT [N] Tactile Medical Hilton Head, SC 843-338-3806 Magdalena Pertoldova, PT,MPT,CLT-LANA Nationwide 866-435-3948 843-342-5700 [G/t] Bellevue, WA 425-688-5900 www.tactilemedical.com Laura M. Flint, PT, CLT, WCC [G] 425-688-5905 Wear Ease, Inc. Murrells Inlet, SC 843-651-7513 Nationwide & International 866-215-0076 or 843-650-4461 Joan Dillon, PT, LLCC [I] Port Townsend, WA 360-774-2636 or 208-424-0512 Melinda Underwood, OTR,CLT [G] www.wearease.com Abilene, TX 325-670-6056 In Canada 325-670-6081 Mathew Palmer, RMT, CLT [N] Lethbridge, Alberta, CANADA 403-327-0334 Angela Wicker-Ramos, PT,DPT,CLT-LANA [A/t] Austin, TX 512-324-1025

October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 23 8 ~ Resource Guide LYMPHEDEMA SUPPORT GROUPS

ALASKA KANSAS PENNSYLVANIA NLN ONLINE SUPPORT Anchorage 907-212-6872 Olathe 913-791-4325 Doylestown 215-345-2894 816-840-9089 Gettysburg 717-339-2620 ARIZONA Philadelphia 215-728-2592 Scottsdale 480-323-1100 KENTUCKY Pittsburgh 412-661-0400 http://lymphnet.inspire.com/ option 5 Louisville 502-629-4062 RHODE ISLAND CALIFORNIA LOUISIANA Providence 401-274-1122 ONLINE SUPPORT Greenbrae 415-924-1699 Lymphedema Lifeline Foundation Baton Rouge 205-763-4243 Los Angeles 310-259-1972 SOUTH CAROLINA Online Support Group Mission Hills 818-496-1643 or 205-763-4051 Greenville 864-214-6006 www.lymphedemalifeline.org Orange 714-731-0233 Baton Rouge 225-763-4051 Murrell’s Inlet 843-651-5398 or 714-420-0233 or 843-421-8014 International Redding 530-241-1900 MAINE Myrtle Beach 843-446-6015 or 843-650-4461 Support Groups San Francisco 415-600-6281 South Portland 207-400-8520 or 415-600-3383 Columbia 803-296-5486 803-296-3897 CANADA Ventura 805-652-5459 MARYLAND eSupport Group: Lanham 301-552-8144 TENNESSEE COLORADO [email protected] Knoxville 865-607-3476 Longmont 303-651-5188 MICHIGAN www.lymphovenous-canada.ca Mesa 970-755-0282 Southgate 734-246-8125 TEXAS CONNECTICUT New Braunfels 830-606-4067 Lymphovenous Association of MISSOURI & Canyon Lake or 830-660-9107 Ontario: 877-723-0033 Danbury 203-790-6568 Sugar Land 281-242-5807 or 416-410-2250 Windsor 860-683-0080 Columbia 573-814-2968 Tyler 903-740-1884 Joplin 417-625-2196 www.lymphontario.org or 903-521-3572 FLORIDA St. Louis 636-256-5200 Aventura 305-937-5802 WASHINGTON Lymphovenous Association of Clearwater/ St. Petersburg NEVADA Quebec: 514-979-2463 727-535-6746 Kennewick 509-736-6060 Las Vegas 702-860-2927 www.infolympho.ca Kent 206-575-7775 Fleming Island 904-269-9113 or 702-494-7355 WEST VIRGINIA NEW HAMPSHIRE GEORGIA Morgantown 304-285-1460 Manchester 603-641-6700 Atlanta 770-442-1317 NEW JERSEY WISCONSIN or 770-330-0036 Somers Point 609-653-3512 Beloit 608-364-2337 HAWAII West Long Branch 732-222-8556 Honolulu 808-527-2588 NEW YORK Attention New CLTs: If you have recently graduated ILLINOIS East Setauket 631-444-4230 from a CLT course you are New York 844-275-7427 eligible for a FREE one year Barrington 847-620-4579 (ASK-SHARE) membership as an NLN Geneva 630-208-4592 OREGON Affiliated therapist. Milton-Freewater 541-938-3208 For more information please Portland 503-413-7284 see the Affiliate application on our website: www.lymphnet.org/ membership/ affiliate-membership

If you are an individual NLN member with a FREE ongoing Support Group, or are in the process of starting a new one, let us know. Call 415-908-3681 to request a Support Group application. We will fax or send one to you right away. You can also apply online at www.lymphnet.org/supportGrpListingApp.htm. New submissions will appear in the following issue of LymphLink. There is more information on starting a support group on page 34. Please note that treatment facilities or businesses that offer Support Groups must be an active NLN Affiliate to qualify for inclusion in this listing. For more information please visit www.lymphnet.org/patients/supportGroup.htm

24 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 THERAPIST PERSPECTIVE

Lymphedema Surgery: The Lymphedema Therapist’s Perspective

By: Julie M. Soderberg, MPT, ATC, CSCS, CLT-LANA Providence Little Company of Mary Medical Center, Torrance, CA

Over the fifteen years that I have tend to fall into two categories: those the custom, flat knit postoperative been practicing as a physical therapist with volume excess which is predom- garments required after surgery. De- specializing in the treatment of lymph- inantly solid, and those whose volume pending on the patient, compression edema, I have seen many different excess is mostly fluid. The first group garments or short stretch bandages patients present with all four stages of patients has lymphedema that is are placed in the operating room at of this complex disease process. In predominantly solid and corresponds the end of the procedure to minimize many instances, treatment has been to Lymphedema Stages two to three. postoperative swelling. long, difficult, and demanding for both They do not respond favorably to patient and therapist. Patients have conservative treatment, and quite often After the SAPL procedure, these often expressed hope for a cure during have a history of either not wearing patients require close observation their lifetime. They longed for the day compression garments or using ill-fit- by their local lymphedema therapist they could wake up in the morning ting garments over the years. They to follow their progress and make without having to think about what may also have had poor access to or adjustments to their garments as they have to do that day to keep their compliance with lymphedema therapy. the lymphedema swelling subsides. lymphedema leg or arm stable. These patients respond very well to Collaboration between the surgical the SAPL procedure, which removes lymphedema therapist, such as myself, We still have no definitive “cure” excess solids and fat. and the patient’s home lymphedema for lymphedema. However, surgical therapist is imperative, because the options now exist that have signifi- After the SAPL procedure, most patient returns to their own local ther- cantly improved the management of patients can expect the size of their apist for continued treatment during lymphedema. affected arm or leg to approach the their recovery. size of their opposite, unaffected arm The three best known surgical op- or leg. The results can be impressive, While the SAPL procedure is suc- tions for lymphedema currently avail- and witnessing patients returning to cessful in removing the excess lymph- able are the suction assisted protein “ground zero” after this procedure is edema solids, it does not prevent new lipectomy (SAPL), lymphaticovenous extremely rewarding. After the SAPL accumulation of excess lymph fluid. anastomosis (LVA), and vascularized procedure and recovery, seeing pic- Therefore, continuous compression lymph node transfer (VLNT) proce- tures of patients wearing a form-fitting garments are mandatory to prevent dures. For more than five years, I have shirt, skinny jeans, or calf-high boots reaccumulation of lymph fluids. A worked with a surgeon who performs for the first time since developing patient who is not willing to wear these three procedures. lymphedema has been unforgettable. compression 24/7 would not be con- sidered a candidate for this procedure. Before being considered a candi- The lymphedema therapy required Therefore, I require my patients to be date for lymphedema surgery, patients before and after the SAPL procedure completely comfortable with compres- must first undergo lymphedema ther- is intense and requires an experienced sion garment use before referring them apy performed by their local qualified lymphedema therapist with special for a SAPL procedure. lymphedema therapist. Usually, this training relating to this procedure. means at least one course of complete These patients take much more of The second group of lymphedema decongestive therapy (CDT) followed my time and effort to treat than other patients have mostly fluid, rather than by continued therapy sessions and lymphedema surgery patients?. How- solid, volume excess in the affected compression garments. Patients who ever, this extra attention is essential arm or leg. These patients tend to fail to respond adequately to CDT because patients will experience poor present earlier in the disease process may be candidates for lymphedema post-surgery results if therapy is not in Lymphedema Stages 0 or 1, initially surgery. performed properly. Preoperative tend to respond better to conservative fitting with custom garments is the first therapy, but require continued garment Patient selection for each of the step. The opposite, unaffected arm use and therapy to maintain their im- procedures is paramount. Patients or leg is used as a template to order provements. They can be candidates October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 25 for the LVA and/or the VLNT proce- time in therapy and less time in com- I also advise patients that they dure, which are physiologic proce- pression than before surgery. Some should choose a lymphedema surgeon dures that can be effective in removing patients after the LVA or the VLNT who is not only Board Certified in Plas- excess lymph fluid. These procedures procedures can be out of compres- tic Surgery and who is experienced may serve as a second stage after sion for a certain number of hours a with performing the procedures, but the SAPL procedure to help control day. For example, patients with arm who also understands the importance the residual fluid accumulation and involvement who have had the VLNT of lymphedema therapy as an inte- decrease dependence on long-term procedure can be out of compression gral part of the patient’s preoperative compression garment use. In short, for 7 to 10 hours a day. Some pa- evaluation and postoperative care. the best candidates for the LVA or the tients have been able to cease wearing For example, just because a plastic VLNT procedures have a fluid-predom- the glove or gauntlet altogether. Again, surgeon is able to perform cosmetic inant, low-volume excess presentation patient selection is very important, liposuction does not mean that they for the optimum result. as I have found that VLNT and LVA will be able to achieve the consistent tend not to be effective in treating the and dramatic results seen with the I have found that patients tend to excess solids in chronic lymphedema SAPL surgery. My experience con- have a very favorable result with mark- that are better treated with SAPL. firms that a lymphedema surgeon who edly less dorsum hand involvement is properly trained in the lymphedema after receiving the VLNT procedure. While surgical results can be procedure is essential for a successful Because we have found this procedure impressive, I do not consider surgery outcome and to minimize surgical risk. to be effective at preventing progres- to be the cure. Regardless of which sion of lymphedema, I have suggest- surgery is performed, it is important for Ultimately, it takes teamwork ed the VLNT procedure to patients patients to continue to receive guid- among the lymphedema surgeon, considering breast reconstruction who ance from their certified lymphedema trained lymphedema therapist, and the have minor symptoms or are at high therapist (CLT). Consultation with patient to achieve the most successful risk for developing lymphedema since a CLT experienced with measuring outcome. When employed as part the VLNT procedure can be combined custom garments is crucial to assist of an integrated treatment system for with a deep inferior epigastric perfo- the patient preoperatively and during properly selected patients, lymph- rator (DIEP) flap breast reconstruction their postoperative care. Patients are edema surgery can be an excellent procedure. encouraged to perform self-MLD daily treatment tool. after surgery to encourage improved After the LVA or the VLNT proce- lymphatic flow. Email: [email protected] dures, patients typically spend less

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26 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 Grocery GPS: Navigating Your Way to Delicious Healthy Foods

By: Hillary Sachs, MS, RD, CSO, CDN North Shore-LIJ’s Cancer Institute, Great Neck, NY

Meals to Heal your order or add on fries if you are sodium broths, frozen fruits and out vs eating at home vegetables for when/if you run out Walking into a grocery store, even of fresh with a specific shopping list, can be 3. Know the quality of food you are overwhelming - even for the most getting and thus improve your health Produce checklist: savvy shopper. “How do I tell that this • Look for skew numbers that start avocado is good?; how do I choose • When eating out, you don’t know with 9. This means that it is organic. a good watermelon?; which of these where the food came from or the If it starts with 3 or 4 soak in water breads are best to buy?” are just some quality of the food. Is it organic, is with 1 part vinegar, 1 part water to of the hundreds of thoughts that could it non-GMO, etc.? You have the remove pesticide residue turn this commonplace chore into control when you are doing the • Where does the food come from? confusion overload. The goal of this shopping Is it grown in the US? Remember, article is to address these questions the farther a food travels, the more and general food shopping confusion 4. Teaches and supports good life time for nutrient content to decline. and to help you choose the most skills Locally grown and in season is healthful, anti-inflammatory foods to always best! help manage your lymphedema. • Cooking teaches more than just that. • Get a variety of colors. Each color It teaches skills including planning has a different health benefit! Why even bother preparing my ahead and following precise • Purchasing pointers: own food versus eat out you may be directions. It is a great opportunity • Avocados/pears are ripe when thinking? Here are my top five reasons for people to get creative and use a they “give” a little when you why doing your own shopping and part of their minds that they may not squeeze them. If they are not cooking is more healthful: use in everyday life. Get everyone in ripe, bring it home and let it sit the family to participate and submit on the counter until it is 1. Pocket more $ and /or cook a recipe! • You can tell a watermelon is ripe if you bang on it and it sounds • If two people are eating out for 3 5. Creates more quality family time hollow like a drum meals per day with an average of $8 • You can tell cantaloupe is ripe if per meal, this will amount to $48 per • Sitting around a dinner table is a it has a slightly sweet smell day and $336 per week! This could great time to talk about everyday • Make sure your produce is free buy you the most expensive, organic things that may not come up in the of mold, is dry and not wrinkled foods in the grocery store with hustle bustle of rushing around and • If your produce starts to go money still left over! eating on the go. bad, like apples, cut off the blemishes and bake it! 2. Save on your calorie budget General Guidelines Aisle by Aisle: Dairy/dairy alternatives checklist: • When many food service Before you go: • Read the ingredients; when establishments prepare foods, their • Do not go hungry possible, minimize added sugars or primary goal is taste and to get you • Bring a list ingredients you may not understand to come back. Thus, they may load • Shop the perimeter; this is where the • Look for hormone/antibiotic free up on salt, sugar and oils. Make the freshest foods are dairy (organic is automatically these same dish at home and likely you • Look for ingredient lists that are things) will be saving hundreds of calories simple and easy to understand • Look for low fat as opposed to without even trying! In addition, you • Make sure you are stocked with non-fat and full fat. You will increase may be more tempted to supersize flavorful herbs and spices, low your satiety and absorb more of the

October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 27 calcium, vitamin A and D this way in the ingredient list What does it mean? Deciphering the • Look out for added sugars. Dairy will • Look for simple, understandable labels always contain some natural sugar ingredients because lactose is considered a • Look at fiber content per serving: • All natural: does not contain sugar. 1 cup of milk has about 12 you want it to be at least 3 grams or preservatives, colors, additives. grams of sugar naturally. Try not to more per serving Not an indicator of antibiotics or much exceed this limit • Try other kinds of grains: amaranth, hormones teff, quinoa, buckwheat, millet, • Free range: animals have access to Meat/poultry/eggs checklist: sprouted/Ezekiel bread outdoors but do not necessarily go • Look for hormone/antibiotic free • Trying other grains can offer variety outdoors (organic is automatically these in texture, flavor, and beneficial • Organic: no pesticides, antibiotics or things) nutrients hormones. Made with 95% organic • Grass-fed beef; this contains more • Some breads, like Ezekiel, offer more ingredients unless 100% is specified anti-inflammatory fats compared bioavailable nutrients and have • Multigrain/whole grain: made in with conventional, corn fed nutrient-rich ingredient list part with whole grains but product • Free range, pasture raised can still contain white flours. Read • Purchasing pointers: Beverage checklist: ingredient lists! • These can often be more • Are there artificial colors or flavors? • No sugar added/sugar free: does not expensive: use as a side dish • Is it possible to avoid plastic mean calorie or carbohydrate free. rather than the main part of your containers for this product? May contain artificial sweeteners, plate • How much added sugars are in the many of which result in stomach • Look for frozen; this is often product? (Other names for sugar upset more affordable include malt, cane syrup, molasses, • Reduced sodium: 25% less than etc.) original product but product itself Seafood checklist: • Choose herbal teas. You can add may still be high in sodium; 120-140 • Where does the fish come from? ice and add 1 tsp of honey or mint mg or less is considered low; 480mg Choose local fish if possible. Fish leaves for a delicious iced tea or more is considered highLow fat: 3 from other countries may be more • Choose seltzer as a calorie free thirst grams or less per serving contaminated quencher • Trans fat free: <0.5 g trans fat per • If using canned fish, try to find those • Flavor water with fresh or frozen fruit serving; make sure there are no that are BPA free or in a pouch as an hydrogenated oils in the ingredient alternative Condiments/sauces checklist: list • Minimize consumption of fish high in • Look for simple ingredients. You mercury want to understand what foods you By using this Grocery GPS to • Use a website such as are eating! navigate the grocery store, you will seafoodwatch.org to choose fish • Use products like hummus, salsa, be able to choose healthy, minimally choices low in mercury and high in guacamole, tomato sauce, nut processed foods. These foods will anti-inflammatory omega-3 fat. butters, herbs/spices and olive/ not only help you to improve your • Includes wild salmon (usually coconut oil overall health, but can also help you cheaper if frozen), trout, • Avoid added salt, sugar to reduce inflammation and maximize haddock and mussels • Make your own ketchup, salad your nutrition to help you best manage • Wild salmon, tuna, and mackerel dressing your lymphedema and other chronic are some of the highest in • Mix lemon juice, olive oil, basil conditions. After all, “we are what we omega-3 fat. and oregano for a tasty/light eat” so the better we treat our bodies, dressing the the better our bodies will take care Grains/breads checklist: • Mix tomato paste, apple cider of us! • Avoid refined or enriched grains in vinegar, honey, garlic powder the ingredient list and onion powder [email protected] • Avoid sugar/high fructose corn syrup www.hillarysachsnutrition.com

Hillary Sachs, MS, RD, CSO, CDN is a board certified oncology dietitian with a private practice and working at Meals to Heal, LLC. She is passionate about the relationship that proper nutrition has on general health and quality of life.

28 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 ASK AN EXPERT

By: Richard Klein, MD, MPH UF Health Cancer Center, Orlando Florida

Q: What is a vascularized lymph the procedure and the protocol of the node transfer surgery? surgeon. Eventually, the transferred A: Vascularized Lymph Node Trans- lymph nodes may significantly improve fer (VLNT) surgery is a microvascular the effectiveness of therapy and re- reconstructive procedure involving the duce the amount of therapy required. harvest of healthy lymph nodes and vessels, in the form of a small free flap, Q: How long do conservative mea- from a viable donor site and trans- sures (i.e. manual lymphatic drain- ferring it to the lymphedema affected age, garments, bandaging) need to lymph node transfer procedures. They limb. Specially trained lymphedema be tried first? should have a close working rela- surgeons employ microsurgical tech- A: Lymphedema therapy is an import- tionship with a certified lymphedema niques to transfer an estimated 5 to ant part of achieving the best results therapist. They should also be willing 8 lymph nodes into the affected body possible with VLNT or other lymphede- and able to take the time to answer part. ma surgeries. The type and length of any questions regarding their experi- therapy will vary between individuals. ence and their approach to lymphatic Q: Does VLNT surgery work? It would be reasonable to expect at surgery. A: Yes. Over time, these vascularized least six or more weeks of conserva- lymph nodes will grow new lymphatic tive therapy prior to surgery for best Q: How will this surgery improve my channels that can bridge the gap be- results. quality of life? tween the blocked lymphatic channels A: The vast majority of patients report and the unblocked ones. The lymph Q: If I’ve had lymphedema for more reduction in swelling, tightness, and nodes can also directly drain excess than 10 years am I still a candidate? weight of the affected limb with im- lymphatic fluid. In some cases, such A: Yes, patients could be considered proved range of motion. Reduction as a lymph node transfer to the axilla for VLNT surgery if their lymphedema in pain, risk of infection, and return to (armpit), tight and obstructing scar excess volume still contains a signif- normal activities are some of the most can be removed and replaced with the icant fluid component. Patients with notable quality of life benefits reported healthy lymph node-containing tissue. chronic lymphedema characterized by patients. This can further improve drainage. by large amounts of excess solid may

be better treated by removal of these Q: How long does VLNT surgery Q: Who is an ideal candidate for solids first with a different procedure, take? VLNT surgery? called suction assisted protein lipecto- A: The surgery itself takes about two to A: Lymphedema tends to cause the my (SAPL) surgery. A consultation with eight hours under general anesthesia. lymphatic system to break down a lymphedema surgeon is recommend- One of the goals of the microvascular increasingly over time. Therefore, an ed to make that determination. surgical team is to minimize a patient’s ideal candidate for VLNT is someone time under anesthesia to aid in a faster who has recently developed lymph- Q: What are the expected out- recovery. edema. The sooner we are able to ad- comes? dress the lymphedema, the better the A: Patients can expect to experience Q: How long will the hospital stay outcome we will have with the surgery gradual results, such as reduction in be? swelling, tightness, and heaviness, A: The average hospital stay is one Q: What kind of time commitment within a few months of VLNT surgery. night. is involved before and after VLNT While it may take up to 18 months to surgery? determine the complete result, many Q: How soon after surgery can I A: Before surgery, lymphedema thera- patients report symptom improve- travel? py is very important to reduce to fluid ments within a few weeks of the VLNT. A: There will have a drain placed after volume excess as much as possible. These factors depend heavily on the surgery for the purpose of reducing For most patients, this means at least cause and severity of the lymphedema. fluid accumulation at the surgical site. one course of Complete Decongestive The drain is generally removed from Therapy (CDT) prior to surgery with Q: What credentials should my sur- 1-3 weeks after surgery depending on continued therapy as needed up to the geon have? the amount of drainage. Depending on time of surgery. After surgery, therapy A: At minimum, lymphedema surgeons the patient and the physician, patients may begin immediately or may not performing VLNT surgery should can often fly home after 1 week. be recommended to begin for several have significant previous training and weeks, depending on the details of experience with microsurgery and [email protected]

October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 29 PATIENT PERSPECTIVE

By: JoAnne DaCosta, Cape Cod, MA

began to swell. My primary care doctor ing out the pores. I also experienced a stated, “There is nothing we can do heaviness, tingling and numbness. The for that.” Being a nurse, I could not lymph fluid was becoming stagnant. believe doctors could not do anything for my arm. My first bout of cellulitis began with a cuticle skin tear on the thumb My oncologist suggested lymph- of my affected arm. At the time I was edema therapy. I was treated with seeing my certified lymphedema Complete Decongestive Therapy (CDT) therapist (CLT) twice weekly, bandag- I am a 7-year breast cancer survi- for several months with good effect. A ing and using my compression sleeve. vor. My journey with breast cancer and year later after another cancer scare, When my thumb became sore, my arm lymphedema began when I noticed I opted to have a prophylactic right painful and hot within 24 hours of the an indentation on my left breast while mastectomy. For some reason after skin tear, I took my bandages off and towel drying my hair in a mirror. I was this surgery the lymphedema became saw that my arm was bright red, hot treated with a left mastectomy, axillary more difficult to treat with CDT. I then and shiny. I had a fever and every bone dissection surgery, aggressive che- experienced a frozen shoulder with an in my body ached. I was scared and motherapy and radiation for stage 3 enormous amount of pain and discom- my CLT told me to get treatment right breast cancer. fort. My arm was not draining, I had away. That incident began my first cording, the arm had a lumpy texture hospitalization of many hospitalizations Eight months after receiving and it seemed like the fluid was seep- for cellulitis. treatment for breast cancer my left arm It was scary to know just how fast cellulitis can travel and I real- ized that I did not want to live my life in fear of cellulitis returning. Return- ing to my CLT and having CDT 2 times per week, bandaging and wearing my com- pression sleeve were not enough. I can take some responsibility by not always being consistent with my sleeve. It was really cumber- some under my clothing. I had to wear clothes sev- eral sizes bigger than my size and I always felt awk- ward and uncom- fortable. At work it was difficult because I worried about infection and injury all the Arms Pre-Operation Arms 28 months Post-Operation

30 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 time and patients would constantly ask ceived was a suction-assisted protein The combined DIEP reconstruc- “What is wrong with your arm?” lipectomy (SAPL) of my left arm which tion and lymph node transfer surgery removed the solids that had built up from my groin to the axilla was one of I had cellulitis several other times from having no drainage. After reduc- the best decisions of my life. My arm and I became so frustrated and was ing my arm, wearing a compression looks normal again, I can wear clothes unable and unwilling to continue living sleeve and glove for a year, having my my own size, I feel healthier than I my life this way. I had coped with the arm measured by my CLT periodically have in years and I celebrate 60 years side effects from chemotherapy and and continuing with CDT I was eligible of life this year as an 8-year breast radiation but my greatest hurdle was for a lymph node transfer. Through this cancer and lymphedema survivor. I living with lymphedema and the sever- process I learned just how important only have to wear the sleeve about half ity of life threatening side effects that a compression sleeve was. During the the day, during the evenings and at may occur. rehabilitation process after SAPL, my night. I mentioned many times that I arm became progressively smaller and only needed a functional arm that was My CLT, Brenna Quinn, educated the compression garment needed to less susceptible to cellulitis. However, me on the surgical treatments that be altered to stay tight enough to keep the truth is that having reconstruc- were being used and their effective- my arm reduced. tive surgery with SAPL surgery and ness on lymphedema patients. In then lymph node transfer surgery has researching my options, I elected to My goal was to be free of a com- changed my life. Today I am healthy consult Dr. Granzow whom my CLT pression sleeve as much as possible. and feel comfortable in my own skin. I knew and respected as a great plastic Dr. Granzow recommended the lymph want to thank Dr. Granzow, my CLT Ju- surgeon with a passion for helping node transfer surgery so that I would lie Soderberg who works side by side breast cancer survivors with lymph- not need to wear it 24 hours a day. with Dr. Granzow, and my CLT Brenna edema and breast reconstruction. My The option was to have that alone Quinn who has worked tirelessly and husband and I traveled across the or in conjunction with deep inferior patiently with me for making this pos- country, from Cape Cod to L.A., mak- epigastric perforator (DIEP) breast sible, especially after hearing from my ing our trip a vacation and a medical reconstruction. After my daughter and first doctor that, “There is nothing we consult for lymphedema. Dr. Granzow I consulted with Dr. Granzow, I made can do about that.” thoroughly explained the surgical pro- my decision to have the DIEP with the cedures that could treat my stage of lymph node transfer. Email: [email protected] lymphedema. The first procedure I re- stop TAKE CONTROL OF YOUR LYMPHEDEMA

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October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 31 LSAP Alum Wins $5,000 advocacy tools under the How You Executive Director, LANA Can Help menu. Our new Phone NLN Lymph Science Advocacy Contact Form will provide you with the • • • Program (LSAP) graduate and support number to call, person to ask for, and group leader Becky Sharpe won the Call for Support Groups talking points. first-place prize of $5,000 as part of If you are interested in starting a Please take action today! Juzo’s Keep Moving challenge. lymphedema support group in your LymphedemaTreatmentAct.org Congratulations, Becky! area or need resources for your • • • existing group, please reach out to the • • • LANA Updates NLN today! We are happy to assist LSAP Alum Honored by with information, materials and other NORD TIME TO RECERTIFY? timely updates. Support group LANA therapists are to recertify applications are available at www. Sophia Hanson, LSAP 2014 alum, every six (6) years. This year CLT- lymphnet.org/node/1050, or please was honored by the National LANA therapists who certified or contact Sam Roth at NLN@lymphnet. Organization for Rare Disorders recertified in 2009 are up for org or 415-908-3681. We look forward (NORD) as part of the 2015 Portraits of recertification. Applications are on-line to hearing from you! Courage celebration on May 19, 2015, and are due Dec. 31, of this year. You in Washington, D.C. Sophia was • • • may check your certification status on among 10 honorees who shared their line through your individual login on the powerful, inspiring stories. See www. LANA website. rarediseases.org/2015-portraits- of-courage-honoree-sophia-hanson/ Interested in becoming a LANA • • • Board of Director or on the LANA Examination Committee? Lymphedema Patient Lymphedema Treatment Online Support Act (LTA) Update Applications are now available Community The Lymphedema Treatment Act is on-line to join the LANA Board of The NLN’s online support community off to a strong start this congressional Directors or to become a member of through inspire.com has been taking session with over 100 House the LANA Exam Committee. We would off with new conversations daily! It is a cosponsors already. All of these love to hear from you! For questions great place to connect with other cosponsors are the result of on either, please contact Katina Kirby patients, caregivers, and even medical constituent contact, from people just at [email protected]. professionals in the lymphedema like you! community. Candidates wishing to take the Cosponsors are one of the key LANA Certification Exam may apply Inspire.com is free for everyone and factors in deciding which bills are take the exam any time during the year. we hope that you will take part and moved forward in the legislative Results will be given immediately for help us grow! lymphnet.inspire.com/ process and passed into law. those taking a computer based test. Continuing to increase our cosponsor Please visit our website for details: • • • count is very important, and your help www.clt-lana.org Applications may be is critical. emailed to [email protected] or mailed to: LANA, P.O. Box 16183, St. Louis MO 63105. Constituent contact is what matters Call for Authors! most. Your Representative’s office needs to hear from you, possibly Stop by and visit LANA’s booth at LymphLink welcomes author- multiple times, so don’t be daunted if the 25th World Congress of initiated papers or case studies that you receive a noncommittal form letter Lymphology in San Francisco this are relevant to patient care and reply at first. Persistence makes the September. clinical practice. Please email a brief difference, and calling after emailing is abstract to Saskia Thiadens at [email protected]. If the abstract especially important. For any questions or concerns, is appropriate for LymphLink, we will please contact LANA at admin@clt- Visit our website to see if your lana.org or call 773-756-8971. contact you for full paper submission. Representative is a cosponsor, then write and call his or her office using the Katina Kirby, MS, OTR/L, CLT-LANA • • • 32 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 President’s Message SAVE THESE DATES for 2016: Continued from page 2 After thoughtful deliberation, she ORLANDO, FL JAN 29-31 Support the NLN decided to undergo first stage SAPL DALLAS, TX FEB 19-21 surgery followed by second stage Do you shop on Amazon? Do you CHARLOTTE, NC MAR 4-6 breast reconstruction and lymph node want to support the NLN? You can PHOENIX, AZ APR 1-3 transfer 15 months later. Today her now do both thanks to Amazon Smile. INDIANAPOLIS, IN MAY 13-15 arm is “normal” and she is living life When shopping on Amazon, simply ST LOUIS, MO JUNE 3-5 to the fullest. The above cases are sign in through smile.amazon.com BALTIMORE, MD OCT 7-9 encouraging. Careful patient selection (your log in information and shopping PALM SPRINGS, CA NOV 4-6 and treatment by experienced plastic cart/wish lists will remain the same!) surgeons should insure that we will continue to see progress in this and select the NLN as your preferred Visit www.lymphseminars.com for population. A special thank you to Dr. charity. further information, to either fill out or Granzow and his team for sharing their download a Registration Form for great interest and experience. Amazon Smile will donate .5% of the Tucson, and for our 2016 proposed 2015 was an eventful year for LE purchase price of thousands of eligible schedule of seminars, or call nationwide, increased interest in items to the NLN, which will help us 805.772.3560. LE among the various disciplines. continue to educate patients and • • • The number of CLT’s and affiliated health care professionals alike. clinics is growing, and interest in the Future Meetings & Events lymphatic system and related disorders continues to grow in the scientific Another great way to support the Save The Date for NORD’s Annual NLN is to donate your old car. world. The Lymphedema Advocacy Rare Diseases and Orphan Products Group has doubled our supporters Breakthrough Summit of HR-1608. Please continue to write A charitable donation to National your state representatives. Sample Lymphedema Network via an old car October 21-22, 2015 at the Crystal City letters of support can be found at makes a huge difference. The “old Marriott in Arlington, VA. LymphedemaTreatmentAct.org. clunker” will quickly convert into support for patients in need through As a proud member organization of Lastly, I would like to applaud the NLN Medical Advisory Committee the Marilyn Westbrook Garment Fund, NORD, the NLN will be in attendance (MAC) and Research committee (RSC), educational materials distributed to representing lymphedema at this cancer centers, and outreach to those a dedicated group of clinicians and Summit - the largest and most researchers who volunteer their time seeking substantive information about meaningful multi-stakeholder event of to support this organization and its this difficult disease. All the logistics its kind – being held in Arlington, VA on mission. I want to extend a very special and paperwork will be handled for you. October 21 and 22. The 2015 thank you to Cathy Tuppo, MS, PT, CLT- This is a very easy way to support Breakthrough Summit convenes the LANA who chaired the committee for the last few years. Thank you, Cathy! NLN’s work on behalf of patients, just top leaders from the FDA, NIH, pharma visit the NLN website at www. We extend a warm welcome to our new and biotech industries, as well as MAC Chair - Jamie Wagner MD. lymphnet.org and click on the “Donate” patients, caregivers and patient page or follow this link - http://www. organizations. For more information, The 12th NLN International lymphnet.org/ways-to-help or to register for this event, please visit Conference is rapidly approaching. • • • NORD’s website at http://rarediseases. Registration opens October 15th and org/event/rare-diseases-orphan- abstract submission opens January 1, Lymphedema Seminars products-breakthrough-summit/ 2016. See page 16. Networking & Educational Seminars The NLN Board of Directors and for Lymphedema Therapists staff wishes you a peaceful holiday season. We look forward to continued *TUCSON, AZ (Oro Valley Hospital collaboration and growth in the field November 6-8, 2015 (10 contact hours) of lymphology in your community and nationwide. PLUS OPTIONAL PRE-SEMINAR WORKSHOP Respectfully, “Fibrosis Treatment: Reduce Pain & Lymphedema, Improve Function” with The views presented by the authors and advertis- Karen Ashforth, MS, OTR, CHT, ers in this issue do not necessarily represent the Saskia R.J. Thiadens R.N. CLT-LANA views of the National Lymphedema Network, the Medical Advisory Committee, or Editorial Executive Director & Founder NLN Friday, November 6, 2015: 1:30-5:30 Committee. [email protected] pm (4 contact hours) October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 33 Support Groups: To list your upcoming events, please send Support Group Schedule us info to [email protected]

MISSION HILLS, CA BATON ROUGE, LA Lymphedema Support Group Baton Rouge General 3rd Thursday from 4 pm to 5 pm 1st Tuesday, every other month PROVIDENCE, RI 818-496-1643 205-763-4243 Program in Women’s Oncology Lymph- VENTURA, CA SOUTH PORTLAND, ME edema Support Group Lymph Luminaries Lymphedema Support and 1st Thursday of every month 3rd Tuesday, 12 pm to 1 pm Education Group 401-274-1122 805-652-5459 1st Wed of Sept., Nov., 12:00 pm JEFFERSON CITY, TN AVENTURA, FL 207-400-8520 Lymphedema Awareness Network of Aventura Lymphedema Chat LAS VEGAS, NV East Tennessee 2nd Tuesday Lymphedema Mavens Tuesdays 305-937-5802 4th Wednesdays, 5:30 pm to 7:30 pm 865-607-3476 FLEMING ISLAND, FL 702-860-2927 TYLER, TX Lymphedema Support Group MANCHESTER, NH The Lymphedema Support Group of Start-up, call for information Aventura Lymphedema Chat Greater East Texas 904-269-9113 1st Friday 1st Wednesday of every month from 9am - 11am ROSWELL, GA 603-641-6700 903-740-1884 Lighthouse Lymphedema NEW YORK, NY Network SHARE Lymphedema Support Group KENT, WA 4th Thursday of Sept., Oct. Every other month Northwest Lymphedema Center 770-442-1317 844-275-74273 (ASK-SHARE) Saturday- Quarterly (call for dates) 206-575-7775 LOUISVILLE, KY PORTLAND, OR Norton Cancer Institute Legacy Cancer Services Lymphedema BELOIT, WI Lymphedema Program Support Lymphomaniacs 4th Wed Each Month, 6:30 pm - 7:30 pm 2nd Tuesday 4 pm - 5:30 pm Wednesdays every other month 502-629-4062 503-413-7284 608-364-2337

To Apply for Assistance, Patient Must... Be a member of the NLN Demonstrate genuine financial need Be treated at an NLN-affiliated clinic Complete a brief medical history Applications are available on the NLN website or we can mail you the printed form. www.lymphnet.org/garmentfund

A Special Thank You To Our Sponsors:

34 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 MESSAGE FROM THE NLN BOARD CHAIR

By: Patricia Egan, MS, MBA, San Francisco, CA

The World Congress of about other advocacy work in which If you Lymphology and Patient Summit NLN is engaged. For over a decade, read NLN’s have been a whirlwind of activity! NLN has been an associate member Team Inspire With patients, therapists, researchers, of the National Organization of Rare blog regularly, doctors, nurses, and world-renown Disorders (NORD), and NLN is cited you may have experts from more than 30 countries as a resource for information about noticed a letter all together, the Congress and Summit lymphedema, which is classified as a about the have provided us with a wealth of new rare disease. https://rarediseases.org/ U.S. Senate information about both lymphedema rare-diseases/hereditary-lymphedema/ Committee and lipedema. The exhibit hall has on Finance’s been teeming with activity as we see On July 10, the House of hearing, “A Pathway to Improving Care new products and services. Parents Representatives passed The 21st for Medicare Patients with Chronic and patients shared some of their Century Cures Act, H.R. 6, which Conditions.” At a hearing on May 15, complex histories during the “Patient provides National Institutes for Health Chairman Orrin G. Hatch and Ranking Clinic,” which a panel of clinical (NIH) funds for research and treatment Member Ron Wyden formed a full experts reviewed to provide insights of rare diseases such as lymphedema. Finance Committee chronic care and hope for many patients. Passage of this bill was considered a working group, co-chaired by Senator major achievement for the rare disease Johnny Isakson and Senator Mark I am very glad to see so much community, and a similar bill will R. Warner. I encourage you to read advocacy and activism throughout the need to be presented to the Senate. the letter to stakeholders that was Congress and Summit. Alumni of the The EveryLife Foundation for Rare signed by the above four members Lymph Science Advocacy Program Diseases, www.everylifefoundation. of the Senate. See www.finance. (LSAP) have attended sessions in org, provides a good deal of senate.gov/newsroom/chairman/ both the Congress and Summit. information about legislation related to release/?id=9f9f2d3e-401e-409b- Dr. Julie Hanson, Legislative Affairs rare diseases in a broad sense, if you a53a-22bbe3f56f2c. You can also Chair and Lymphedema Advocacy would like additional information. search on “Chronic Care Working Group Executive Committee member, Group Letter.pdf”. conducted a briefing session about In the State of New York, the new Avalere Health analysis of Assembly Bill 230 is under As I reflect on all that we learn the Lymphedema Treatment Act, H.R. consideration for the establishment at conferences such as the World 1608, and updated the audience about of a grants program to support Congress of Lymphology and Patient the growing level of cosponsorship lymphedema and lymphatic diseases Summit, I hope that we patients find among members of the House of research. NLN supports this bill, and strength in our collective ability to Representatives. People interested our Founder and Executive Director, make the change we wish to see. Just in becoming involved with their state Saskia Thiadens, wrote a compelling as we learn to manage our disease, teams had the opportunity to meet letter of endorsement to Governor we also learn that we can join forces with Heather Ferguson and Patti Andrew Cuomo. You might like to with other advocates and activists on Graybeal in the exhibit hall. NLN know that Saskia was honored with behalf of lymphedema, lipedema, and supports passage of the Lymphedema a Legislative Resolution last June related diseases. Treatment Act, and many LSAP alumni by the New York State Legislature are involved at leadership levels. in recognition of her many years Good wishes, of pioneering work on behalf of Saskia Thiadens and I recently lymphedema patients through NLN. Pat attended the West Coast Conference NLN members who reside in New York on Rare Disease Legislative Advocacy might well want to read more about at the University of California San this bill at https://legiscan.com/NY/bill/ Patricia Egan, MS, MBA Francisco Medical Center. I thought A00230/2015. Chair, Board of Directors that you might like to know more

October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 35 NLN EDUCATIONAL MATERIALS NLN® LymphLink Article Reprints Reprints of the following articles previously published in the NLN LymphLink are available at $1.75 each for non-members, $1.50 each for members, shipping included. NLN Members can download our entire catalog of reprints, as well as Case Studies, Question Corners, and Legislative Updates at no charge. For a complete listing of available reprints, visit www.lymphnet.org. Note: “LE” is an abbreviation for lymphedema.

r Volume 23, No. 2 Apr-Jun ’11 r Volume 25, No. 3 July-Sept ’13 r Special Circular Revised 2000 GJC2 Mutations Cause Primary LE Utilizing Complete Decongestive Therapy to Lymphangitis (Infection): A Constant Fear Kara L. Levine, MS, Eleanor Feingold, PhD Treat Lymphedema: Evidence from Contem- Saskia R.J. Thiadens, RN David N. Finegold, MD porary Literature r Special Circular July ’01 r Volume 23, No. 2 Apr-Jun ’11 Kathryn McKillip Thrift, BS, CLT-LANA DeCourcy Squire, PT Starting a LE Support Group NLN Staff The Unraveling The Genetics Behind LE with r NLN Position Papers Whole Exome Sequencing and Near-Infared r Volume 25, No. 3 July-Sept ’13 By The NLN Medical Advisory Committee Flourescence Practical Application of the Systematic ___ EXERCISE ___ TREATMENT ___ TRAINING Eva M. Sevick-Muraca, PhD Review of the Evidence for Complete De- r Volume 23, No. 3 July-Sept ’11 congestive Therapy for Treatment of Lymph- ___ RISK REDUCTION PRACTICES* edema The Challenge of Infection in Lymphedema ___ BREAST CANCER SCREENING Bonnie B. Lasinski, MA,PT,CI,CLT-LANA *Also available in Spanish. Joseph L. Feldman, MD, CLT-LANA r Volume 25, No. 4 Oct-Dec ’13 r Volume 23, No. 3 July-Sept ’11 r Volume 11, No. 3 Jul-Sep ‘99 Managing Lymphedema in Palliative Care Use of Prophylactic Antibiotics in Patients The Use of Three Compression Sleeves in CDT: Anna Towers, MDCM, FCFP A Comparative Study of Clinical Effectiveness with Lymphedema Saskia R.J. Thiadens, RN Kathleen Francis, MD r Volume 25, No. 4 Oct-Dec ’13 r Volume 23, No. 4 Oct-Dec ’11 A Summary of the Publication: Palliative Care r Volume 13, No. 2 Apr-Jun ’01 for Cancer-Related LE: A Systematic Review Imaging Lymphatic Disorders Foot Care for Lower Extremity LE— Marcia Beck, ACNS-BC,CLT-LANA Some Guidelines Joseph Hewitson, MD Emily Iker, MD Edwin C. Glass, MD r Volume 26, No. 1 Jan-Mar ’14 r Volume 16, No. 3 Jul-Sep ’04 r Volume 24, No. 1 Jan-Mar ’12 Lymphedema Self-Management When It Isn’t LE Paula J. Stewart, MD,CLT-LANA Sheila H. Ridner, PhD, RN, FAAN Exercise for Breast Cancer Survivors: Pre- Mei R. Fu, PhD, RN, ACNS-BC, FAAN r Volume 18, No. 2 Apr-Jun ’06 vention, Treatment, and Attenation of Per- Pediatric Lymphology: Diagnosis and sistent Adverse Effects of Treatment... Of LE? r Volume 26, No. 1 Jan-Mar ’14 Treatment Kathryn H. Schmitz, PhD, MPH Psychosocial Impact of Lymphedema: A Sys- Ethel Foeldi, MD; Guenter Klose, CI,CLT-LANA r Volume 24, No. 1 Jan-Mar ’12 tematic Review Mei R. Fu, PhD, RN, ACNS-BC, FAAN r Volume 19, No. 2 Apr-Jun ’07 Exercise is Medicine for Cancer Recovery Sheila H. Ridner, PhD, RN, FAAN Resource List: When One Size Does Not Fit All Anna L. Schwartz, PhD, FNP, FANN Bonnie B. Lasinski, MA,PT,CI,CLT-LANA r Volume 26, No. 2 April-June ’14 r Volume 24, No. 2 April-June ’12 r Volume 19, No. 3 JuL-Sep ’07 Surgical Treatment of Lymphedema: A Re- Breast Cancer-Related Lymphedema in the Morbid Obesity and LE Management view of the Literature and a Discussion of Genomic Era Caroline E. Fife, MD; Susan Benavides, CLT-LANA the Risks and Benefits of Surgical Treatment Mei R. Fu, PhD, RN, ACNS-BC, FAAN Gordon Otto, PhD Janice N. Cormier, MD, MPH Jeanna M. Qiu, Summer Research Intern r Volume 19, No. 4 Oct-Dec ’07 Kate D. Cromwell, MS r Volume 26, No. 2 April-June ’14 TIP List: Tips for LE Patients Undergoing Surgical Jane M. Armer, PhD, RN, FAAN Procedures Paula J. Stewart, MD,CLT-LANA r Volume 24, No. 3 July-Sept ’12 Genetics of Secondary Lymphedema Michael Bernas, MS r Volume 20, No. 2 Apr-Jun ’08 Psychosocial Issues Impacting Self-care r Volume 26, No. 3 July-Sept ’14 Pertinent Signs/Symptoms of Primary LE Adherence to Discuss Paula J. Stewart, MD,CLT-LANA Sheila H. Ridner, PhD, RN, FAAN An Interdisciplinary Approach to Addressing r Volume 20, No. 3 Jul-Sep ’08 r Volume 24, No. 3 July-Sept ’12 Breast Cancer-Related Lymphedema: The Massachusetts General Hospital Experience Effects of Radiation Therapy on the Barriers to Self-Management of Cancer-Re- Jean O’Toole, PT, MPH, CLT-LANA Lymphatic System: Acute and Latent Effects lated Lymphedema Chantal Ferguson, BA; Meyha Swaroop, BS Brian D. Lawenda, MD Mei R. Fu, PhD, RN, APRN-BC Tammy E. Mondry, DPT, MSRS, CLT-LANA r Volume 26, No. 4 Oct-Dec ’14 r Volume 24, No. 4 Oct-Dec ’12 r Volume 20, No. 4 Oct-Dec ’08 Drugs and Lymphoedema: Those Which Optimizing Functional Independence, Self- Use of “Elastic Taping” in the Treatment of May Cause Oedema or Make Lymphoedema Care, and Quality of Life in the Frail Elderly Head and Neck LE Worse With or at Risk for Lymphedema Ruth Coopee, OTR/CHT,MLD/CDT,LMT Vaughn Keeley, MD, PhD, FRCP Bonnie B. Lasinski, MA, PT, CI, CLT-LANA r Volume 21, No. 4 Oct-Dec ’09 r Volume 24, No. 4 Oct-Dec ’12 r Volume 28, No. 2 April-June ’15 An Assessment of the Role of Low-Level Lipedema and Nutrition An Update on Lymphedema of the Head and Laser Therapy in the Treatment of LE Linda Anne Kahn, CLT-LANA, CDT, CMT, CN Jeffery R. Basford, MD,PhD Neck Andrea L. Cheville, MD,MS r Volume 25, No. 1 Jan-Mar ’13 Sheila H. Ridner, PhD, RN, FAAN Autologous Lymph Node Transfer: An Update r Volume 28, No. 2 April-June ’15 r Volume 22, No. 2 Apr-Jun ’10 Constance M. Chen, MD, MPH Edema, LE & Comorbidities r Volume 25, No. 2 April-June ’13 Lower Limb Lymphedema after Gynecologi- Nancy Hutchison, MD, CLT-LANA cal Cancer Surgery: An Overview Exercise in Patients with Lymphedema: Evi- Kun Li, PhD, RN; Jeanna M. Qiu; r Volume 22, No. 2 Apr-Jun ’10 dence from the Contemporary Literature and Mei R. Fu, PhD, RN, ACNS-BC, FAAN LE Emergencies — Red Flags How to Apply the Evidence Today Bonnie Lasinski, MA, PT, CI, CLT-LANA Joy C. Cohn, PT, CLT-LANA r Volume 28, No. 3 October ’15 Marilyn L. Kwan, PhD r Volume 22, No. 4 Oct-Dec ’10 Overweight and Obesity: An Update The Vital Role of the Lymphedema Caregiver r Volume 25, No. 2 April-June ’13 Catherine Tuppo, PT, MS, CLT-LANA in Home Care What is Cording? Mary Kathleen Kearse, PT, CLT-LANA Jodi Winicour, PT, CMT, CLT-LANA

36 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 LE Diagnosis and Therapy NLN Specialty Items Publications Profs. H. Weissleder, MD C. Schuchhardt, MD, 2008 *FREE Shipping for all NLN Specialty Items Impressed by You This Fourth Edition has been complete- r LYMPHEDEMA ALERT BRACELET Joyce Bosman, PT, and Els Brouwer ly revised and expanded. Features 248 FOR UPPER EXTREMITIES ~ 8” This remarkable book of 28 portraits mostly color illustrations and 85 tables. highlights personal stories celebrating the r NLN® Member: $70.00 + $7.00 s/h children, teenagers, women and men living r Non-Member: $75.00 + $7.00 s/h with lymphedema and lipedema. r NLN® Member $39.99 + $7.00 s/h Dr. Vodder’s Manual Lymph Choose engraving for LE in the: r Non-member: $45.00 + $7.00 s/h Drainage: A Practical Guide Left Right Both by: Hildegard Wittlinger, Dieter Wittlinger, Andreas ____Arm ____Arm ____Arms Lymphedema Wellness Manual Gay Lee Gulbrandson, CLT-LANA Wittlinger, and Maria Wittlinger, 2011 $19.50 (CA tax-exempt) A “Whole Health Catalog” for the lymphede- An excellent addition and practical guide Bracelet Plate: 1.75 in W by .25 in H ma community. Every topic a lymphedema for students, therapists and doctors. Total Length: 8 in patient or therapist may need to access r NLN® Member: $59.95 + $7.00 s/h is included - for a complete and well-re- r LYMPHEDEMA ALERT NECKLACE r Non- Member: $64.95 + $7.00 s/h searched quick reference, with links and re- sources that are thorough and documented Where the Sky Touches for follow-up. ® the Earth: A Lymphedema r NLN Member $ 89.95 + $7.00 s/h Therapist’s Guide to Working For lower extremities, choose one: r Non-member: $94.95 + $7.00 s/h with the Whole Person Both Legs ___Left Leg ___Right Leg ___ LE: An Information Booklet Sharon Langfield, Janet McFarland, and David $18.00 ea. (CA tax-exempt) Rankine, 2011 9th Edition, Rev. ©2013 The book takes an eclectic approach to LE This classic NLN® educational Problems with your Alert Bracelet Clasp? therapy, using ideas from multiple New Age publication provides the methods and ancient healing practices to For a FREE user-friendly clasp, basics of lymphedema, address caring for the “whole person.” send a SASE with current postage to: treatment, diagnosis, and JUDY BERG risk reduction. r NLN® Member: $30 + $7.00 s/h 115 MALVERN AVENUE r $5.00 incl. s/h r Non-Member: $35 + $7.00 s/h FULLERTON, CA 92832 Földi’s Textbook of Lymphology, Lymphedema Caregiver’s Guide 3rd edition Mary Kathleen Kearse, PT, CLT-LANA; Educational DVDs M.Foldi, E.Foldi, © 2012 Elizabeth McMahon, PhD; and Ann Erlich, MA, 2009 Fully revised and updated information in First book to provide detailed ­instructions CDT FOR THE TREATMENT all chapters for caregivers on all aspects of LE home ® OF GENITAL LYMPHEDEMA– r NLN Member $ 229.00 + $10.00 s/h care including physical care; also ways for MALE & FEMALE r Non-member: $235.00 + $10.00 s/h caregiver to prevent injury and burnout. ® 90 min. DVD © 2004 Lymphedema Management: r NLN Member: $34.95 + $7.00 s/h Presented by Norton School of Lymphatic A Comprehensive Guide r Non-Member: $38.95 + $7.00 s/h Therapy and Guthrie Healthcare Systems for Practitioners Voices of Lymphedema: Stories, r NLN® Member: $44.95 + $7.00 s/h 3rd Edition ©2012 Advice & Inspiration from Patients r Non-Member: $49.95 + $7.00 s/h Joachim Zuther and Steve Norton Updated chapters plus LE measuring Edited by Ann Ehrlich & Elizabeth McMahon, PhD LYMPHEDEMA EXERCISES strategies, palliative care, head and neck www.LymphNotes.com 2007 For The Upper Extremities and Kinesio taping. Practical information on dealing with Steve Norton, MLD/CDT Instructor r NLN® Member: $89.90 + $7.00 s/h ­lymphedema on a day-to-day challenge 65 min. DVD © 2006 r Non- Member: $94.90 + $7.00 s/h presented through a collection of ­inspiring Designed as a support to the home-care stories from LE patients. main­tenance program of patients who Lymphedema: A Concise r NLN® Member: $24.95 + $7.00 s/h have completed CDT. Compendium of Theory and r Non- Member: $29.95 + $7.00 s/h r NLN® Member: $29.95 + $7.00 s/h Practice The Puzzle: An Inside View of r Non-Member: $34.95 + $7.00 s/h Byung Lee,John Bergan, Stanley Rockson © 2011 Experts in the field, representing many Lymphedema LYMPHEDEMA EXERCISES diciplines providing personal, clinical and © 2011 For The Lower Extremities research experience, including extensive Comprehensive book about lymphedema Steve Norton, MLD/CDT Instructor references. written by those living with the condition 65 min. DVD © 2006 r NLN® Member: $219.00 + $10.00 s/h day by day. The book intends to encour- Designed as a support to the home-care r Non-member: $225.00 + $10.00 s/h age and educate patients and loved ones main­tenance program of patients who about lymphedema. have completed CDT. r NLN® Member: $19.95 + $7.00 s/h r NLN® Member: $29.95 + $7.00 s/h r Non-Member: $24.95 + $7.00 s/h r Non-Member: $34.95 + $7.00 s/h

October/December 2015 ~ NATIONAL LYMPHEDEMA NETWORK 37 ORDER FORM National Lymphedema Network Membership: r $50 ~ INDIVIDUAL (U.S.) r $70 US ~ INDIVIDUAL (Canada) r $75 ~ HEALTHCARE PROFESSIONAL (U.S.) r $90 US ~ INDIVIDUAL (Outside U.S./Canada) r $100 ~ NON-PROFIT GROUP/ORG (0 to $150K) r $150 ~ NON-PROFIT GROUP/ORG ($150K and up) r $250 ~ INSTITUTION or PRIVATE BUSINESS/ORG r This is a donation “In Honor Of...” Name and address of Honoree is attached. r This is an NLN Membership Renewal

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Shipping and Handling

PLEASE NOTE: Our shipping rates have changed. In order to better serve lymphedema patients and increase awareness of lymphedema, we now offer FREE SHIPPING for all SPECIALTY ITEMS.

• FOR DVDs AND PUBLICATIONS: Unless otherwise noted, add $7.00 ship­­ping & handling for the first item, AND $3.00 for each additional item in the US (For Hawaii & foreign countries, contact the NLN® for correct rates before ordering.)

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Please complete the Order Form and mail these 3 pages, along with a personal, company, or cashier’s check made payable to: National Lymphedema Network, Inc. to 225 Bush Street, Suite 357, San Francisco, CA 94104 Questions? Email: [email protected], or call: 415-908-3681 | www.lymphnet.org | www.lymphnet.org/store

38 NATIONAL LYMPHEDEMA NETWORK ~ October/December 2015 Become an NLN Supporter

By supporting the National Lymphedema Network (NLN®), not only are you becoming a part of the movement to create aware­­­ness in the United States about lymphedema, treatment and risk reduction, but your donation makes the NLN’s work possible. As a non-profit organization, we depend on your support. If you would like to make an additional tax-deductible donation to the NLN®, please enter the amount on the line below and indicate “additional donation.” To make a donation in honor of a loved one, fill in the amount and include a note stating: “donation in honor of ______,” your address and the address of the honored party; we will send notice of your donation. Thank you in advance for your appreciated support.

SASKIA R.J. THIADENS, RN, FOUNDER/EXECUTIVE DIRECTOR

NLN SERVICES AND RESOURCES: • A quarterly journal, LymphLink, with cutting edge-articles, a Resource Guide (listing of lymphedema clinics, therapists, physicians, suppliers, support groups), and listings of conferences and professional training programs • A toll-free infoline (800-541-3259) and support for referrals and guidance (415-908-3681) • An extensive educational website: www.lymphnet.org • The international NLN Conference • The Marilyn Westbrook Garment Fund

NLN MEMBERS RECEIVE: • Subscription to LymphLink • Discounts on educational materials, including books and DVDs • Discounts on NLN’s conferences • Access to online articles published since 1989 • Access to the Marilyn Westbrook Garment Fund

NLN AFFILIATE MEMBERS ADDITIONALLY RECEIVE: • Listing in the Resource Guide in LymphLink and on the NLN website • Ability to refer patients to the Marilyn Westbrook Garment Fund • Three copies of LymphLink

THE NLN IS DEDICATED TO: • Promoting lymphology as a medical specialty • Adopting standards acceptable to the US medical profession for the training and certification of lymphedema therapists • Securing adequate insurance coverage for the safe and effective treatment of lymphedema • Expanding the number and geographical distribution of approved lymphedema treatment facilities and certified therapists • Promoting research into the causes, risk reduction, and treatment of lymphedema

NLN Top Supporters from October 2014 - Present

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