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Lymphedema

A Comprehensive Overview

What every patient needs to know to survive this condition

San Diego Lymphedema www.sandiegolymphedema.com Part of the Encompass Family Physicians Medical Group, Inc 10225 Austin Drive, Suite 108; Rancho San Diego, CA 91978 Joseph P. Aiello, DO Linda Jewell Husar, HHP, CLT-LANA Phone: 619-670-8028 Fax: 619-670-9675

LYMPHEDEMA

TABLE OF CONTENTS

INTENTION...............................................................................3 WHAT IS LYMPHEDEMA?...........................................................................4 FIBROSIS..................................................................................5 BACTERIAL INFECTIONS.................................................................6 THE E MOTIONAL IMPACT OF LYMPHEDEMA..........................................7 RISK FACTORS FOR THE DEVELOPMENT OF LYMPHEDEMA..........................8 WARNING SIGNS OF LYMPHEDEMA...................................................9 PRECAUTIONS..........................................................................10 AIR TRAVEL AND LYMPHEDEMA......................................................11 TREATMENT OF LYMPHEDEMA.........................................................12 THE PNEUMATIC PUMP.................................................................13 FINDING A THERAPIST...................................................................14 NUTRITIONAL GUIDELINES.............................................................15 RESOURCES..............................................................................16 LINDA JEWELL HUSAR, BIOGRAPHY...................................................17 INFORMATION RESOURCES.............................................................18

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Intention

Lymphedema is affecting more people today than ever before. With new inroads in cancer treatment, people are living longer and are therefore at greater risk for developing this condition. This booklet was designed and formulated to help explain lymphedema--what it is, who is at risk, and how to protect oneself from this disturbing, debilitating condition. Resources are listed to further assist in finding answers to each individual's specific needs.

Remember...

Knowledge is power. The scale and impact of lymphedema are often underestimated. Being proactive can save a lot of heartache.

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What is Lymphedema?

Lymphedema is a swelling caused by a blockage of the normal lymph flow. When lymph nodes are removed or radiated the lymph channels are destroyed. The protein-rich fluid becomes trapped and swelling results. According to the National Lymphedema Network, 25 ­ 30% of all patients diagnosed with and treated for breast cancer will develop lymphedema at some point and time in their lives.

Lymphedema is a progressive condition. This means that the swelling, if untreated, is likely to continue to expand the tissues. Unchecked, over time, the swelling can progress to extreme proportions that are quite disabling. The good news is that lymphedema is becoming more widely recognized and treated. With treatment, self-maintenance, and compression, individuals with lymphedema are living normal lives, engaging in many of the activities they love. Lymphedema can be controlled. It doesn't have to control you!

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Fibrosis

Fibrosis is a condition that many individuals with lymphedema face. It is a hardening of the skin that is often caused by the excess protein that is found in the swollen body part. When the skin hardens, the lymph is prevented from flowing through normally. This creates more swelling. Because the fluid has no where to go, it begins to stagnate, creating a ripe environment for bacteria to flourish. People with lymphedema are more prone to recurrent bacterial infections because of the unhealthy state of the tissues. In the picture below the cording or webbing that is sometimes experienced as a result of breast cancer surgery is visible. This type of fibrosis limits range of motion and can create a sense of tightness and restriction. The hardened tissues can affect the nerves creating a sensation of pain or discomfort. Fibrosis can also result from radiation, burns, and the long-term use of a compression pump when used to treat lymphedema.

Fibrotic Webbing Photo from Emily Iker, MD

Radiation fibrosis due to breast cancer treatment

* (Sourced from LymphNotes.com

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Infections

When a person has lymphedema, the fluid in the swollen body part has no where to go. It stagnates, creating an unhealthy environment. This unhealthy environment is perfect for bacteria to thrive. Small cuts, fissures in the skin and cracked dry skin allow bacteria to enter the system and create serious health problems. Below is a photo illustrating how this type of infection can present. It is red, often warmer than the surrounding area, and has a defined border. This type of infection can be painful and may cause flu-like symptoms. If you notice any of these symptoms, call your doctor immediately. This is a serious infection and if left untreated, it can be potentially fatal. A strong antibiotic must be administered to control it.

Sourced from Lymphedema People

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The Emotional Impact of Lymphedema

Lymphedema is often an unexpected and unwelcomed consequence of cancer and its treatment. Coping with the diagnosis of cancer can be overwhelming and frightening. Treatment is a full time job. Lymphedema represents one more thing to worry about, deal with, and manage. Little is documented about the emotional impact of lymphedema and yet, this is an important issue to discuss. Lymphedema often evokes feelings of isolation and a sense that the individual diagnosed is the only one who has ever experienced these disturbing symptoms. Lymphedema therapy is relatively new in the United States, only arriving on the scene in the 1970s. As such, the condition of lymphedema has not been a primary focus of medical research and study. Few physicians are skilled in its diagnosis or know about treatment options. This lack of understanding, and often empathy, can be disturbing to someone seeking information and answers. Having lymphedema can cause many individuals to feel self-conscious and embarrassed over their disfigurement. Depression, disgust, and feelings of hopelessness often ensue. Loss of breasts or genital edema can cause sexual dysfunction for those affected. This alienates the person from significant relationships and causes great emotional pain. Seeking the help of a skilled counselor can help one sort through and process the experiences of being diagnosed with cancer and lymphedema. Support groups represent another avenue of help. Taking advantage of the services available will help to minimize the long-term emotional effects of these traumatic events.

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Risk Factors for the Development of Lymphedema

The risk factors for the development of lymphedema include: Trauma

Kinetic Injury such as falls, car accidents, etc. Surgery -Any surgery can disrupt normal lymphatic channels of flow -Mastectomies remove large areas of lymph channels -Surgical removal of nodes can disrupt normal processing of lymphatic wastes Burns Tumor Compression, whether benign or malignant -Tumors can create obstructions to normal lymphatic function

Radiation therapy Very damaging to nodes Significant contributor to symptoms of swelling Creates scarring and fibrosis -When nodes are scarred, potential for blockage increases -Scarring continues for up to a year after treatment -Can be a final insult to a system that is already compromised Function and structure of vessels remain intact with radiation -New cell growth is inhibited, preventing generation of anastomoses, the little bridges that connect the quadrants, providing another outlet for the fluid -Lack of alternative pathways put the patient at greater risk -Additionally, skin becomes hardened, or fibrotic -Normal drainage patterns are disrupted -Leads to lymphedema -Surgery Note: The most conservative surgeries, when combined with radiation therapy, are very damaging Chemotherapy -Some types and applications can be damaging to the lymphatic vessels. ONSET OF SYMPTOMS Varies per individual -Symptoms present immediately after initiating event -Symptoms present weeks, months, years, even decades after compromise -Symptoms could be subtle and very mild, or extreme and debilitating. Primary determination is the extent to which the lymphatic system was damaged and how functional the system was before the compromising event

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Warning Signs of Lymphedema

The warning signs of lymphedema are important to note. Being aware of your body and the changes in sensation that you experience could mean the difference between reversing the condition and living with it full time. Become acquainted with these warning signs and seek the attention of your doctor or lymphedema therapist should you observe any of these changes

A feeling of heaviness, fullness, or pressure in the affected region. A sensation of swelling, even before the swelling can be seen. Jewelry or clothing that fits more snugly than usual. Any increase in the size of the limb or anywhere in the affected quadrant of the body. The swelling could be on the chest, back, or around the scar. Pitting--if pressure is applied to the swollen part, and held for a moment, the skin does not bounce back. A bursting sensation in the limb. A pins-and-needle sensation in the limb. Pain or tenderness. A feeling of heat in the affected arm or quadrant. Redness, blotchiness, or inflammation. This symptom could indicate a very serious bacterial infection. Aching in the limb, shoulder, or back. Loss of skin elasticity. A hardening of the skin. Skin ulcerations. The inability to pinch a fold of skin on one of your fingers.

If an at-risk individual experiences any of these symptoms, she/he should consult a physician at once. The need for vigilance is critical. Even before visual symptoms appear, sensing a difference in an at-risk limb could be the first sign of onset. Lymphedema is a serious and progressive condition. STAGE 1 LYMPHEDEMA CAN BE REVERSED. EARLY DIAGNOSIS AND TREATMENT IS ESSENTIAL. 9

Precautions to Avoid or Minimize the Onset of Lymphedema Symptoms

Learning how protect yourself is important. Making informed choices with regard to your physical activity gives you power over the condition. Each individual responds differently to what initiates or worsens symptoms because of the difference in each person's lymphatic structure and function. If you find a certain activity increases abnormal sensations or symptoms, modify or eliminate that activity. Physical Restrictions

Avoid lifting heavy objects with the affected limb. Avoid vigorous, repetitive movements against resistance (scrubbing, pushing, pulling). Do not over-tire an arm at risk when exercising Avoid trauma of any sort, including: -Needle pokes and -Blood pressure cuff readings on affected limb

Skin Care

Keep skin clean, soft, and supple. Use natural deodorants without aluminum Have any infections, unusual redness (inflammation) attended immediately by a doctor. Avoid cuts, scrapes, burns, puncture wounds. No needle punctures or blood pressure cuffs on affected limb. Use sunscreen to avoid sunburns, even under bandages or compression sleeves. Wear long sleeves and protective gloves when tending houseplants or working in the garden. Use cotton glove when pouring hot liquids or ironing

Nail Care

Cut nails straight across and file smooth the corner edges. Use cuticle cream or olive oil. Push back cuticle back with a clean towel Never cut cuticles. When having a manicure, use own nail-care implements

Core Body Temperature

Stay in air conditioning when the weather is hot. Avoid taking hot baths, Jacuzzis, steam baths, etc.

Travel Precautions

Wear a sleeve when on air flights or traveling by car, bus, or train into the mountains. Change position of limb often. 10

Air Travel and Lymphedema

(From the National Lymphedema Network)

Air travel poses definite risks for people with, or at risk for, lymphedema. The problems are three-fold. 1.) Cabin pressure during flights is less than atmospheric pressure on the ground. Decreased pressure in the cabin may increase swelling in the tissues as interstitial pressures are physiologically altered. 2.) Air travel is sedentary. Lack of movement causes blood and lymphatic circulation to slow and fluid to pool in the extremities. 3.) Dehydration occurs during air travel. Ambient air pressure is dry, lending itself to dehydration of the body. Due to the protein-rich nature of the extra-cellular fluid, increased ultrafiltration of fluid from the blood into the extracellular spaces causes increased swelling in the affected limb. The following recommendations are made to ensure safe air travel for those with, or at risk for, lymphedema: Wear external compression. -Wearing a compression garment helps to provide external tissue pressure that decreases potential for fluid accumulation in the tissues. (Purchase a sleeve from a certified fitter to ensure a good fit.) If additional compression is needed, use compression bandaging instead. (Be trained by a certified lymphedema specialist for appropriate technique for safely applying compression bandaging.) -Apply compression before flying and leave on until reaching final destination. -While away from home, continue with regular schedule compression care. -Compression also assists the muscle pumps encourage reabsorption of fluid. -Purchase a garment well in advance of travel to ensure adequate fit. -Wear a new garment a full day prior to travel to identify any potential problems with fit. -A glove or gauntlet is strongly recommended to reduce risk for increased swelling in the hand. Stand and move about every 30 ­ 60 minutes. -Move arms and legs frequently to prevent pooling in static limbs. -Make a fist and open fingers wide to help prevent increased swelling in hand and fingers. -Reach arm above head to adjust lights, air vents, or to call attendant. Drink plenty of filtered water to rehydrate tissues. Obtain a prescription for antibiotics. -A prophylactic prescription for antibiotics and directions for use will help combat an infection while traveling. -When traveling abroad, fill the prescription prior to departure. Wear a lymphedema alert bracelet while traveling. -In the event medical attention is required, medical care givers will know not to take blood pressure reading or give needle pokes in affected arm.

www.lymphnet.org/nlnairtravel.pdf

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Treatment of Lymphedema

-Combined Decongestive Therapy (CDT) is the most effective treatment for this condition, to date. -CDT is a combination of treatment protocols that include the following: -Skin therapy -Breath therapy -Manual therapy -Compression therapy -Remedial decongestive exercise.

-Skin therapy *Keep skin clean, soft, and supple *Monitor skin for any areas of hardness *Look for breaks in skin integrity *Treat any portals for infection -Breath therapy *Integrates diaphragmatic breathing *Activates the pumping action of the lymphatic vessels through the stretch receptors found in the muscle cells lining the vessel -Manual therapy *Unique massage strokes *Activates lymphatic activity *Clears adjacent quadrants to receive excess fluid *Redirects lymphatic flow to a functioning lymph node station *Light pressure to mobilize skin stimulates the lymphatics -Too much pressure will collapse the delicate lymphatic vessels causing excessive filtration, exacerbating the condition -Compression therapy -Increases tissue pressure -Helps stimulate stretch receptors in the lymphatic vessels -Effectively increases the lymphatic flow, helping to reduce swelling -Involves usage of specialized short-stretch bandages -Also includes use of a compression garment **Compression is crucial to the effectiveness of treatment as it prevents excessive stretching of the skin and helps retard the symptom of swelling. -Remedial exercise -Performed with use of compression on the affected limb -Helps to increase the effectiveness of the muscle pumps against the tissue pressure -Serves to inhibit swelling

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The Pneumatic Pump

The pneumatic pump is a tool sometimes used to treat lymphedema. There are two main types of pumps: -A multi-chambered, sequential pump that compresses from the bottom to the top of the limb and -Whole limb pump, non-sequential (The latter is contraindicated for use with lymphedema) Using the pump alone is not a recommended practice. It fails to clear the channels required to receive and redirect the surplus fluid from the tissues. This creates, in time, a circular hardening, or fibrosis, around the top of the affected limb. Additionally, as the fluid is pushed into the unprepared tissues, edema is often created in the shoulder / back / or chest in an arm lymphedema. In a leg lymphedema, abdominal swelling and / or genital edema can occur. However, when applied in conjunction with manual lymph drainage, during the treatment session, the pump can be effectively and safely utilized.

Be aware: Modified from the Norton School for Lymphatic Therapy: Use of the pump is still utilized in many treatment centers despite the known drawbacks. Financial advantages achieved through insurance reimbursement are good motivators. Additionally, it is quite easy to place a patient on a pump without the attention of qualified or experienced personnel. Some clinics may also use pumps because they simply do no have trained lymphedema therapists on staff.

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Finding a Therapist

In San Diego, San Diego Lymphedema offers a comprehensive lymphedema treatment solution. Many forms of insurance are accepted. Go to sandiegolymphedema.com to learn more. The National Lymphedema Network recommends that a qualified lymphedema therapist have no fewer than 120-130 hours of training with a recognized lymphedema training center. The qualified therapist will be happy to share his/her training and qualifications with you. The Lymphology Association of North America (LANA) has introduced a certification protocol as a way of establishing a baseline standard for lymphedema therapists. One can go online to access a list of LANA certified therapists in each state and in Canada. The website is: www.clt-lana.org/therapists/grads.html. The accepted standard of care for lymphedema patients is CDT, Combined Decongestive Therapy. It involves a gentle massage, compression bandaging, skin care, remedial exercise, and training in self-care maintenance. Ask your prospective therapist what is involved. Utilizing a pneumatic pump as an isolated or sole therapy is not recommended. A number of various health care professionals are qualified to train with specialties in lymphedema therapy. These include, physical and occupational therapists, nurses, and massage therapists. Finding a provider who is amply qualified is a matter of asking the right questions. You should feel comfortable with your care and have a good rapport with your therapist. Remember to be an informed consumer.

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Nutritional Guidelines For Those With, Or At Risk For, Lymphedema

Protein

Protein is needed to ensure that the walls of the blood vessels maintain their integrity. Eating adequate protein is highly recommended.

Salt / Sodium

Salt / sodium usage can cause fluid retention, especially with lymphedema. Limiting intake is recommended.

MSG

Avoid monosodium glutamate whenever possible. It is found in most canned foods as a preservative, even though the ingredient labeling identifies it simply as a natural preservative.

Sodas

Sodas are harmful because of phosphates that absorb calcium from the bones. Diet soda is more harmful than regular soda.

Alcohol

CAUTION!!! Some people have experienced a more rapid onset of swelling from wine than any other food!!! This is possibly due to the high sulfide content in some wines. Overall, avoid all alcoholic beverages.

Water

Drinking water is essential for those with, or at risk for, lymphedema. If water intake is limited, the body is fooled into storing water because of drought-like conditions within the body. Drinking 6 ­ 8 glasses of filtered water every day adequately hydrates the body and helps to flush out toxins. Many patients report that drinking 6 ­ 8 glasses of water daily will help to reduce limb size.

Fruits and vegetables

Especially at a time when body systems are not functioning optimally, eating a variety of fresh fruits and vegetables is critical. Adequately supplying the nutrients essential for cell function will help promote good health in all areas.

Oxygen

Cells require oxygen for survival. Deep abdominal breathing provides oxygen to all the cells of the body.

Diet

Eating a well balanced diet and watching one's weight is important in controlling lymphedema.

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Resources for Lymphedema

San Diego Lymphedema; 10225 Austin Drive, Suite 105; Spring Valley, CA 91978; ph: 619-670-9675 Providing comprehensive care for the lymphedema patient Joe Aiello, DO Bronner Handwerger, ND Linda Jewell Husar, HHP, CLT-LANA LANA (The Lymphology Association of North America)- Certified Lymphedema Therapist Trained through the Dr. Vodder School, North America The National Lymphedema Network (NLN): 800-541-3259 or 510-208-3200 Website: www.lymphnet.org The NLN is a non-profit organization and a major information clearinghouse for lymphedema. It offers: Lymphedema Alert Bracelets Lists of certified lymphedema therapists and treatment centers across the US (Although not all certified therapists register with them) Access to educational videos, publications and timely articles through informative quarterly newsletters An extensive computer database, and biennial international conferences Other Websites: Lymphology Association of North America (LANA) Website: www.clt-lana.org, email: [email protected]t.org Lymph Notes: www.lymphnotes.com Lymphedema People: www.lymphedemapeople.com Norton School of Lymphatic Therapy: www.nortonschool.com/aboutlymphedema.html Excellent sources for additional reading: Coping With Lymphedema, by Swirsky and Nannery (Avery Publishing) Lymphedema- A Breast Cancer Patient's Guide to Prevention and Healing, by Jeannie Burt and Gwen White, PT (Hunter House Publishers) Lymphedema, an American Cancer Society booklet (call 800-227-2345) Primer on Lymphedema, by Debra G. Kelly, PT, M.S.Ed (Prentice Hall) The following schools train and certify therapist throughout the world and can provide names of therapists in your area. (Courses offering fewer than 135 hours of training are not listed) Dr. Vodder School- Austria and Canada; Phone: 250-598-9862; Web page: www.vodderschool.com The Foeldi School- Germany; Phone: 011-49-761-406921; Email: [email protected] The Casley-Smith School of Lymphatic Therapy- Australia; Phone: 61 8 8271 2198; Website: http://www.lymphoedema.org.au US Affiliates of the Casley-Smith School: The Lymphedema Center- Georgia; Phone: 404-377-9883 Boris Lasinski School- New York; Phone: 516-364-2200 Klose Training and Consulting- New Jersey; Phone: 866-621-7888; Website: www.klosetraining.com Norton School of Lymphatic Therapy- New Jersey; phone: 866-455-9674; Website: www.nortonschool.com Academy of Lymphatic Studies- Florida; phone: 800-863-5935, Website: www.acols.com Kessler-Lerner Lymphedema Services Academy- Maryland; phone: 800-684-9885, ext. 14; Website: www.kessler-rehab.com Lymph Drainage Therapy (Upledger Institute)- Florida; Phone: 800-311-9204, ext. 92008; Website: www.upledger.com Lymphedema Consultants-Pennsylvania; Phone 412-866-0512

Lymphedema, an American Cancer Society booklet (call 800-227-2345)

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Biography

Linda Jewell Husar

LANA- Certified Lymphedema Therapist Neuromuscular Therapist

Encompass Family Physicians Medical Group Inc.

Linda Jewell Husar is a Holistic Health Practitioner who holds dual certification as a lymphedema therapist through the Dr. Vodder School, North America and The Lymphology Association of North America. Additionally, Linda was a senior international instructor of the St. John Method of Neuromuscular Therapy for twelve years, teaching extensively throughout the United States and Canada. Linda's extensive experience includes educating and treating patients with lymphedema; working with post surgical patients to relieve pain and restricted range of movement; providing palliative care to terminal cancer patients; treating individuals with both acute and chronic pain symptoms, including temporomandibular joint (TMJ) dysfunction; assisting in the creation of balance in the body to maximize performance and minimize risk of injury; helping the delicate geriatric population with issues of pain and physical limitation.

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Information for this Booklet was sourced from the following resources:

The National Lymphedema Network The Lymphology Association of North America Lymph Notes Lymphedema People Norton School of Lymphatic Therapy Renato Kasseroller, MD Medical Director of the Vodder School Lymphedema-Diagnosis and Therapy; Prof. Horst Weissleder Silent Waves, Theory and Practice of Lymph Drainage Therapy; Bruno Chikly, MD Understanding Lymphedema Pathophysiology and Treatment; Joachim Zuther Lymph Stasis: Pathophysiology, Diagnosis and Treatment; Waldemar L. Olszewski Coping with Lymphedema; Swirsky and Nannery Lymphedema- A Breast Cancer Patient's Guide Prevention and Healing; Jeannie Burt and Gwen White Primer on Lymphedema; Debra Kelly, PT University of London Luna Medical Breast Cancer.Org Sioux Valley Breast and Bone Health Institute

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