Basic Lymphadema Care Tips

Here's a great article about a couple basic things you can do to help with your lymphadema.

The first time I see a patient is for the evaluation. At the end of the evaluation I give my patients a packet of information to take home and read, instruct them in the Anatomy and Physiology of the Lymph System, and give them two things to get a head start on before we initiate our treatments. These two things are:

1. Any time you wash, dry, or lotion the swollen arm/leg, always rub up towards the body/heart. What we generally do is rub up and down. The lymph system is very close to the surface and the normal pressure we use to do these every day activities of washing, drying and putting on lotion is enough to stimulate that lymph system, so move the direction we want the fluid to go.

2. Deep Abdominal Breathing: The last tube of the Lymphatic system goes up through the chest passing through the Diaphragm. As we breathe the Diaphragm moves up and down massaging the lymph fluid up and into the Blood Circulatory System. Thus, by doing Deep Abdominal Breathing it creates a “wicking” effect, drawing the lymph fluid from the limbs and body.

• Deep Abdominal Breathing: Place one hand on your chest, the other hand on your stomach just below the ribs. Breath in slowly through your nose – your chest should stay still while your stomach expands out. Then blow the air out through your mouth as if blowing out 50 birthday candles – your stomach should pull in. Your exhale should be twice as long as your inhale. Do 10 of these breaths as often as you can recall throughout the day. (If you start to feel light headed stop and breath normal. To not get light headed, pause for 2 seconds at the end of each inhale and each exhale.)

With these two activities I often see patients return to start treatment with some decrease in their swelling.

Sonja M. Maul PT, CLT-LANA

National Board Certified Lymphedema Therapist

Lymphatic Fluid

Many people that I meet are puzzled by lymphadema. They usually ask me right away if a doctor can prescribe something that will remove the fluid. In my head I'm usually wanting to scream, "WOW what a mind blowing thought! Do you honestly not think I've already thought of THAT?!" but because I was raised with manners, I control myself and explain that the fluid that builds up in lymphedema isn't just "water" and can't be treated with diuretics. It's important to understand this because if you suffer with lymphedema you will probably have to explain this to many people in your life.

A really wonderful website called "Lymphedema People" has this very well written information about diuretics. Please visit this site for lots of wonderful information and support.

To understand why these agents are not recommended for the treatment of lymphedema we must first start with a basic definition of edema and lymphedema.

Edema: Abnormal pooling or build up of fluid in tissues. Generally caused by underlying medical conditions such as hypertension, varicose veins, thrombophlebitis, congestive heart failure, kidney failure steroid therapy, inflammatory reactions, or injury or trauma.

Diuretics are used to assist in the correction of the base problem causing the edema.

Lymphedema: A disorder in which “lymph” collects usually in a limb as a result of a congenital, hereditary malformation of the lymphatic system, or is a result secondary conditions such as node removal for biopsies, damage to the lymphatics from radiation, injury or trauma or by parasitic infection. Diuretics cannot help the underlying condition of lymphedema.

Why not use diuretics for lymphedema?

Perhaps the single most important consideration is in the composition of the lymph fluid caused by lymphedema. The fluid is a protein-rich substance that provides a breeding and nourishment center for bacteria. This has to be removed to lesson the risks of cellulitis and lymphangitis.

This fluid also has to be removed so as to prevent the formation and progression of fibrosis as lymphedema advances through the various stages.

Diuretics remove none of this waste fluid."

Lymphedema People founder Pat O'Connor also gives this advice to people whose doctors may recommend diuretics to treat lymphadema,

"Please, please don't get a diuretic to treat the lymphedema. Diuretics will in the long run make the lymphedema worse. They remove the water, but are unable to remove the heavier waste proteins in that fluid. That will cause tissue hardening, more swelling and even more susceptibility to infections.

Tell the doctor (don't ask - tell) that you want a referral to a Certified Lymhpedema Therapist."

The Lymphadema / Lipedema Connection

Many people who suffer from lymphadema may also have a condition called "lipedema" which is deifined in Wikipedia as "a disorder of adipose tissue distinguished by five characteristics: 1) it can be inherited; 2) it occurs almost exclusively in women; 3) it can occur in women of all sizes, from the anorexic to the morbidly obese; 3) it involves the excess deposit and expansion of fat cells in an unusual and particular pattern – bilateral, symmetrical and usually from the waist to a distinct line just above the ankles; and 4) unlike the “normal” fat of obesity, lipedemic fat cannot be lost through diet and exercise.

Lipedema usually is triggered at puberty, but can trigger or worsen during or after pregnancy, at peri-menopause, and following gynecological surgery. If lipedema is diagnosed early, which currently is very rare, it is possible to prevent a significant expansion of lipedemic fat cells, and to alert patients to their heightened risk for obesity so they can take appropriate action.

Estimates of the incidence of lipedema vary widely, and range as high as 11% of the post-puberty female population. Even if the number were only 5%, that would mean more than 6 million women in the United States alone."

The Wikipedia article also goes on to state that "Patients tend to gain weight in lipedemic areas and lose it in non-lipedemic areas. Obese lipedema patients who undergo bariatric surgery lose fat primarily from the waist up. Even anorexic women can starve and exercise away "normal" fat but retain lipedemic fat.

The classic early-stage lipedemic profile is a woman who looks like a size 8 from the waist up and a size 16 from the waist down with disproportionately large, column-like legs. As lipedema progresses, patients become increasingly heavy in the lower body. The additional, expanding fat cells interfere with the pathways of lymphatic vessels, and patients can develop secondary lymphedema, a condition known as lipo-lymphedema. Many lipedema patients cannot tolerate the compression garments associated with conventional lymphedema treatment because the underlying lipedemic fat is very painful, and those patients therefore are at risk for the side effects of uncontrolled lymphedema, including recurring blood infections and fibrosis.

Women with lipedema also are at very high risk for obesity because the lipedemic fat cannot be lost, and because as the condition worsens, patients become progressively less mobile."

Many people who suffer from lipedema may not realize that they have this condition. It is also difficult to get a diagnosis from a medical doctor, as they may not be aware what this condition is, or have little knowlege of it. If you think you have this problem, it might be best to seek out a lymphedema specialist who can help you with diagnosis and treatment options.

The following is an interesting article that ran last summer in the Victoria Times:

Being seriously overweight can be depressing, emotionally upsetting and socially stressful.

It can hurt, too, when a person suffers from a condition called lipedema, also known as painful fat syndrome.

"Lipedema is not related to overeating," stresses Robert Harris, director of this city's Dr. Vodder School, and an expert in fluid retention and acute swelling.

"People can starve themselves, have surgery, take slimming pills and nothing helps," he says of the chronic condition that occurs in females almost exclusively. It is characterized by symmetrical fatty-tissue buildup and swelling, from hips to lower legs.

The syndrome was first identified in 1940 and since then has mostly been studied and written about in Europe, says Harris, whose school is teaching ways to reduce this edema (swelling) through massage and application of strong elastic bandages or garments -- a therapy that began in Germany.

"It is seriously underdiagnosed in North America, but starting to be recognized."

The cause is unclear, and there is no cure for the condition that experts say affects at least one in 2,000. Researchers believe it might be genetically linked, however, with a connection to hormones, microcirculation and inflammation. Harris adds it is different from lymphedema, the swelling complication that can result from cancer surgery, radiation and damage to lymph nodes.

"I have a very deep, achy feeling in my legs," says a 28-year-old Victoria woman who asks not to be identified, but has suffered from severely swollen lower limbs since age 12. "My mother had it, too. I can't stand too long, and it's very sore if someone bumps me or touches my legs."

For years she tried all kinds of slimming programs but to no avail. Then a year ago she was diagnosed with lipedema and discovered the massage therapy that is helping reduce both pain and swelling.

Three world authorities in lipedema management and treatment are in Victoria this week, offering workshops through the Dr. Vodder School to about 50 massage therapists, physiotherapists and health professionals from around North America. On Sunday morning, anyone with the condition can attend a free session at St. Margaret's School auditorium, 1080 Lucas Ave. (For health professionals the cost is $25.)

It starts at 8:30 a.m. with research updates by Dr. Horst Weissleder, professor of radiology at the University of Freiburg, Germany. He has published more than 200 articles about radiology, nuclear medicine and lymphology in international medical journals, and co-authored Lymphedema Diagnosis and Therapy.

After his talk, Angela Vollmer, an expert in fitting compression garments, will discuss lipedema and compression garments.

"This is a very painful condition, and people can diet, diet, diet and it doesn't help," she explains. "Why? Because it is an illness, and not caused by excess calorie consumption. These people need lymph drainage treatment (massage) to remove excess liquid, and compression hose -- either Bermuda or Capri length stockings -- to keep the swelling down. With this treatment they don't see a great reduction in volume, but there is a great decrease in pain and improved quality of life."

The buildup of lymphatic liquid is what creates the pressure and pain, and garments, made of flat-knit material, should be used for compression.

"These new garments do not constrict circulation and distribute even pressure to a large surface.

The wide weave allows air to flow, which makes daily wear more bearable for the patient and there is micromassage through movement, which supports the decongestive therapy," she says.

In recent years, she says, German experts have also developed new liposuction techniques to help dissolve fatty tissue, "and very fine needles to take out the liquid quite easily."

Author Grania Litwin © Times Colonist (Victoria) 2006

The Ledbed Method Helps Lymphadema Sufferers

Here is another article that deals with the excercise program called "The Ledbed Method" I had never heard of it before reading these articles, but it sounds very intriquing - and I'm very impressed that Ms. Flynn sells her jewelry to help lymphadema sufferers purchase compression garments - that's such a wonderful thing to do! This particular article ran in the Pennisula Gateway out of Washington State.

A group of women stand in a circle, blowing bubbles through small, colorful plastic bubble blowers, and giggle. The laughter is just as important in this class as the stretching, toning and dancing that follows.

At first glance, it seems like all fun and games — class instructor Anne Flynn hands out hats and feather boas and leads her students through a series of movements set to fun music. But the class is part of a groundbreaking exercise program called “The Lebed Method,” designed for cancer survivors and patients suffering from lymphedema and chronic illness.

An occupational therapist and lymphedema specialist, Flynn began teaching classes for multiple sclerosis sufferers last October and began implementing her training for cancer patients last month. Flynn said lymphedema is a condition where a person’s lymphatic system has been damaged, especially cancer patients who have been undergoing chemotherapy.

“The lymphatic system rids your system of waste,” Flynn said. “When it gets interrupted, junk stays in there. The excess protein causes the skin to become hard and leathery.”

The condition can also cause painful swelling in limbs or other parts of the body. Special garments designed for the condition are expensive, because they have to be custom-made to fit each individual.

“I originally started the class for MS patients who were telling me that their movement was better and their pain was down,” Flynn said. “There’s so many people with pain, and the people who really feel a decrease in pain is the population that exercises.”

Flynn teaches the Lebed classes at Allenmore Hospital in Tacoma and at the MultiCare Gig Harbor Medical Park on Point Fosdick Drive.

The Lebed program was designed by Sherry Lebed Davis and is recognized by the National Lymphedema Foundation. Lebed was a former dancer and breast cancer survivor from Seattle.

“She couldn’t move her arms and was weak from surgery,” Flynn said. “She found that slow stretches and exercises helped her improve tremendously, so she began setting up classes for other people. She took the program out of the mothballs.”

The Lebed Method has since earned national acclaim and has been featured on TV shows such as “Lifetime” and “The Today Show.”

“The Lebed method is widely known in cancer circles and in other countries,” Flynn said.

“It’s great for patients with lymphedema,” she added. “We focus on lymph-cleaning exercises. It’s a series of slow, steady stretches in a certain order. It’s like traffic on a freeway — you have to clear out one area before you can go down the road. This increases the pumping action of the lymph vessels and helps the flow of (the body’s) waste material.”

Flynn’s students will readily vouch for the wonders of the Lebed method: Laura Justice was diagnosed with MS in 2003 and has participated in the class since it started.

“This is something I look forward to every week,” she said. “Anne really started me moving and kept me moving. Her personality is so great. She makes this class so fun, and she’s fun to be with.”

Justice said the no-stress atmosphere of the class helped her relax and enjoy the exercises.

“She lets me sit in the chair if I’m fatigued,” she said. “She lets me work at my level and come in and do what I can do.”

Flynn said that when she took the Lebed training, she saw it addressed many physical problems.

“For cancer patients, their bodies have been their enemy,” she said. “I help them get back in touch with it in a good way. We have 10-minute water breaks that have turned into a support group. The students interact, but instead of being sad, their endorphins are flowing and they’re upbeat and filled with joy and hope.”

Flynn has a history of nurturing and caring, having worked in nursing homes for 11 years. She began specializing in lymphedema treatment four years ago and decided to augment her therapy with Lebed classes and was pleasantly surprised by the results.

“It’s very rewarding to see people improve so quickly,” she said. “I see results in every patient as long as they stick with it. And you don’t have to be an aerobics instructor to teach this class.”

Flynn’s interest in helping others has gone beyond her classes and into a personal hobby to help lymphedema patients purchase special compression garments. A sock can cost as much as $100 to $150 — a glove as much as $500.

Flynn fashions her own custom jewelry and sells it at the Healthy Reflections Boutique in Gig Harbor. The proceeds from the sales are donated to help patients who can’t afford to purchase the garments.

“A lot of people are without insurance, and elderly people are on a fixed income,” Flynn said.

Her jewelry is made from fine silver, sterling silver, freshwater pearls and handmade glass. Flynn fashions the glass into decorative beads and cooks it in a small kiln at her home.

“You shape the glass with torches and rods,” she said. “It’s a lot of fun. I use whatever colors I feel like using that day and the designs are kind of whimsical. When I work, I’m like a kid in a candy store.”

Reach reporter Susan Schell at 253-853-9240 or by e-mail at susan.schell@gateline.com.

Photo caption: Occupational therapist and lymphedema specialist Anne Flynn displays some of her handcrafted jewelry. Proceeds from the sales help lymphedema patients purchase costly compression garments.

This article appeared in the Orange Country Register Health Column. It's an interesting idea for exercises designed for women recovering from breast cancer and those who may also be suffering from lymphadema that sometimes accompanies breast surgery.

What if I told you blowing bubbles – those kiddie ones that come with a wand in a plastic bottle – should be part of your morning fitness routine?

Or that the same exercises designed to help women recovering from breast cancer will also benefit people with Parkinson's, fibromyalgia, chronic fatigue syndrome, weight control, senior fitness, even pregnant women?

Sherry Lebed Davis created this innovative program for breast cancer survivors and now finds she is a national sensation for general fitness. Her program is taught at hospitals, wellness centers and fitness clubs.

She brings her program to Orange County as part of a three-day seminar for professional trainers Friday-Sunday at the Cordelia Knott Wellness Center in Orange. She'll also appear in two different short segments from 6 to 8 a.m. on KDOC-TV's Daybreak OC on Friday.

Q: Your program has been featured in just about every major publication, from PEOPLE to The New York Times, and on television talk shows and various health conferences. What's going on here?

A: These exercises were developed with my two brothers (Dr. Joel P. Lebed and Dr. Marc R. Lebed for my mom 28 years ago because she had breast cancer and she was depressed. But as the program progressed, it started to be used for people with other illnesses.

There are so many medical studies going on about it – from multiple sclerosis to hospice care, even pool exercises. Who would have thought a program started for mom is now in 14 countries outside the U.S.? I'm pretty proud and amazed and so are my brothers.

Q: You have trainers who teach the program and also a book, "Thriving After Breast Cancer" and a DVD, "The Lebed Method, Focus on Healing." The DVD actually best illustrates your program, I understand, because it focuses on healing dance and movement therapy?

A: Well, it's fun and easy and it also increases flexibility, works on balance, may help reduce lymphedema swelling, helps decrease frozen shoulder. It just has many benefits.

Q: I like the DVD because the people in it are obviously in recovery themselves. You developed lymphedema after you got breast cancer and are shown wearing a compression sleeve. Others are wearing leg compression stockings.

A: I got breast cancer in 1996 and flew more than 300 times before I developed lymphedema. No one told me to wear that preventive sleeve before I flew. But that experience led my brothers and me to design a special program to work with the lymphatic system. The lymphatic system is a major part of the immune system and the exercises, that open the DVD, should be done by everyone.

Q: The book is liberally illustrated with what appear to be simple exercise movements.

A: I was a professional dancer and choreographer. The exercises are very slow and smooth with some resistance. They're fun. In our classes we use props and a lot of fun things.

Q: I assume you encourage people to go to a class before they purchase the book or the DVD?

A: Yes, that's the best way to get involved, of course. But if there's no class available, then the book or DVD will get you going.

Q: Where can we get information on classes and other materials, such as the book?

A: Go to my Web site, www.focusonhealing.net. There is information on teachers nationally. And if someone cannot afford the book or DVD, we do have a nonprofit to help them. It's all on the Web site.

Q: And if I don't want all the goop from blowing bubbles in my house?

A: Blow on a pinwheel instead.

Contact the writer: Jane Glenn Haas jghaas@cox.net

Natural Healing of Lymphadema

For the past few weeks I have been trying a new direction in managing my lymphadema. I have been going to a holisitic practioner for detoxing. I know this isn't everyone's cup of tea, and I respect your right to choose your own treatment, but for me, I want to see if I can find another solution. I'm somewhat nervous to reveal the particulars of the treatment because I'm not sure if it will work - but I'll never know unless I try - and I don't want to hear any criticism about it right now. I'm so fed up with other people telling me what I should be doing when they don't live in my body or my life. I appreciate their "concern" and most of it I know is well-meaning - but isn't the road to hell paved with good intentions and such? Yeah, I thought so.

Anyway, the plan right now is to use the alternative treatments for a time and see how it goes, then perhaps use them in conjuction with leg wrapping. Currently I am not wrapping my legs because I wanted to see if the treatments actually work and although it is happening slowly, I do think it is making some difference, and so does my husband and daughter - so that's some slightly more non-biased opinion. I am going to start keeping a measurment journal so that I will have more concrete evidence - rather than just saying, "It seems to be working." I'll let you know how it goes.

I did want to share this information that I found in the "Complete Encyclopedia of Natural Healing"

Lymphedema is the ongoing, abnormal swelling of an arm or leg (sometimes both legs), and very occasionally other parts of the body, such as the head or intestines. Besides swelling, symptoms can include skin thickening, the leaking of lymphatic fluid when the skin is broken, and bursting pain, where the skin feels like it is about to explode.

Most cases of lymphedema in the U.S. are the direct result of trauma associated with surgical and radiation treatments for breast cancer. Other causes include parasites, automobile accidents, and other physical injury.

The most frequent complication associated with lymphedema is cellulitis, or streptococcal infection of the skin and subcutanous tissue. Patients will run a high fever, the arm or leg will turn red. Other complications include leaking of the lymph fluid, known medically as lymphorrhea; some people leak fluid all the time. Rarely, patients develop malignant tumors in the swollen arm or leg, so called lymph angiosarcoma.

Lymphedema should be treated immediately, as it can be life-threatening. Early indications include tight jewelry and skin that does not lose it's indentation after being squeezed for several seconds.
Treatments
Manual Lymphatic Drainage: This simple method employs light, slow, rhythmic movements to stimulate lymphatic flow. it can be used as a prevenitive measure following a mastectomy, before lymphedema occurs. When used after breast removal surgery, studies show that it can reduce scarring, increase arm mobility, and alleviate pain and uncomfortable sensitivity.

Diet
An abundance of fresh, organic, live foods, such as sprouts, salads, and fresh juices aid detoxification and promote good health. The best foods to eat are complex carbohydrates; animal protein and sodium should be avoided. Green juices such as wheatgrass, celery and parsley, contain chlorophyll which purifies the blood and lymph. Green juices are too strong to be taken alone, however, and should be diluted with other juices and pure water.

Herbs
The following herbs are known for their anti-edema qualities: hyssop, rosemary, black licorice root, astragalus, and dandelion root. Alfalfa, corn silk, juniper berries, lobelia, and pau d'arco are also helpful. Garlic is valuable for it's anitmicrobial and antibiotic properties.
Supplements
Certain nutrients help to cleanse the lymphatic system and move materials through. These include vitamins B1, C and E as well as L-taurine, potassium and raw kidney extract.

Magnets
When properly applied to the affected region, magnets stimulate lymphatic flow. The negative pole is the one used.

Respiration
Breathing deeply is the most cost-effective way to activate stagnant lymph fluid. One technique, recommended by California lymph specialst Dr. William Martin, is the following: Breathe deeply in through the nose and out through the mouth, in cycles of three. With each exhalation, push the air out strongly. The third time, before exhaling, hold the breath as long as possible. While the breath is being held, imagine where the healing breath should go, and mentally direct it to that part of the body.

This excercise opens up lymphatic ducts and speeds lymphatic flow. It also releases pain, because pain can come from a lack of oxygen at the cellular level. A word of caution: Never hold in air to the point of stress, and stop to rest if this causes dizziness.

Other ways to improve respiration include light bouncing on a small trampoline, while breathing deeply, as well as bio-oxidative therapies, which empliy ozone or oxygen. Aerobic excercises prompt lymphatic drainage, and sweating removes toxins from tissues.

Minimizing Symptoms
Heat should be avoided, as it causes the body to produce more lymphatic fluid. This means no hot showers, hot tubs, or saunas. Wear long sleeves and hats to avoid sun exposure.

To minimize the chance of skin cuts, gloves should be worn when gardening. Electric razors, rather than manual ones provide less chance of cutting the skin.

Patients are urged to avoid strenuous excercise and lifting heavy objects.

Women who wear a breast prosthesis should find the lightest one possible, and bra straps should be padded. Whenever possible, bras should not be worn as they restrict lymphatic flow.

Skin and nail care should be meticulous to avoid infections, and patients should avoid going to manicurists who use their intruments on other patrons.

Patients must avoid injections to affected areas or to the arm nearest where the breast cancer was. They must avoid having a doctor take blook or blood pressure readings from that arm, nor should they receive chemotherapy in that arm.

Mosquito bites can lead to serious infections and must be avoided.

Maintaining a normal weight minimizes symptomatology.

If airplane travel is neccessary, the arm or leg should be wrapped and elevated before takeoff. Preparation for travel includes taking extra garlic and other natural antibacterials.

What to Avoid
The most detrimental foods contain salt, sugar, and caffeine. It is also important to stay away from processed foods and artificial chemicals.
From The Complete Encyclopedia of Natual Healing, p.252-254

My Big Foot on TLC

Tonight I discovered there is a program on The Learning Channel called "My Shocking Story" with one epsiode called "My Big Foot" about two different women living the "lymphadema life." I was sorry that I missed the very beginning of the show. My daughter actually told me it was on. It was interesting to see what therapy choices they chose and what results came from it.

I checked the TLC website and the program runs one more time January 28th at 12:00 a.m. but I couldn't figure out if it's eastern time zone or what. If you can figure it out, maybe you can tape it or something. I also couldn't find a place to order copies of programs, so I'm not sure if that service is available or not. If someone finds that information, I would like to know more.

Here is a brief snynopsis of the program:

My Big Foot

Vicki is 45 years old and since she was a child her leg has been growing bigger and bigger as a result of the condition, Lymphedema.

Her foot and leg have grown out of all proportions and are now so big that it’s hard to fathom that they are actually part of a human body - her leg alone weighs 7 stone. A single mum to her 8 year-old daughter, she is struggling to survive, living under the poverty line, with a terrible medical condition.

We spend time with Vicki, understanding how tough life is for her and really getting under the skin of what it’s like being her. Her spirit and sense of humour are indicative of her strength as she battles to live life to the full.

She has never had the finances to get treatment, but now through the help of Pam Cohen at Lymphax supplying her with free treatment and care, Vicki has a chance of a new life. Through massage and drainage, her leg will be reduced, and through wearing tight and painful supports she could reduce her leg to a normal size. She has been waiting for 30 years for this chance.

But Vicki's story becomes even more engrossing as her previous doctor reveals that unbelievably she has been allowed free medical care before, but has refused it as she has fallen in love with her leg. As she has had this condition for so long she looks at her leg as a living entity which separates her from normality and makes her feel exceptional.

As she begins to talk to her leg more and more, are we to believe she will really go through with the treatment or are her words just false promises?

This is a link to the center that helped Vicki with her condition

http://www.lymphatx.com/

Lymphadema Still Underdiagnosed

Here's an article that came out recently in the amednews.com - the newspaper for america's physicians. Hopefully this will alert some doctors to recognize lymphedema in their patients and to help them get proper care.

Lymphedema no longer rare, still underdiagnosed

Washington -- Trained in family practice medicine, Caroline Fife, MD, didn't know what she was getting into when she decided to begin treating people with lymphedema.

She was operating a wound clinic at Memorial Hermann-Texas Medical Center in Houston and was receiving calls from people seeking relief for their swollen limbs. They seemed to have nowhere else to go. So she thought, "How hard can it be? I know a lot about leg swelling."

"Never say that," she cautioned. About nine years ago, she hired a part-time therapist for the clinic. Within a year she had eight therapists. "Patients came out of the woodwork."

She's been treating patients with lymphedema ever since, and she's had to reach out to others to learn how best to do so. "I had one lecture on the lymphatic system in medical school. [Lymphedema] seemed so rare I thought I would never need to know about it."

"It's an ignored field of medicine," said Saskia Thiadens, RN, the executive director of the National Lymphedema Network, based in Oakland, Calif., which she founded 20 years ago. "I would say that of the majority of patients who go to see their primary care physicians, the chances that he or she will be diagnosed are pretty slim."

Many patients are misdiagnosed for years, said Andrea Cheville, MD, associate professor of physical medicine and rehabilitation at the Mayo Clinic in Rochester, Minn. When diagnosing a patient with a swollen leg, for example, physicians tend to think, "Is it the heart? Is there a blood clot? Is there a tumor in the abdomen? Often patients get an echocardiogram. They will get an ultrasound of their leg and a CT scan of the belly. If those are negative, many times they are told, 'Well, this is nothing that is going to kill you. Aren't you glad? Good-bye.' "

Yet it's not so unusual to see patients, both men and women, with swollen limbs caused by a slowdown in the lymphatic system, which serves as an extensive drainage network to maintain the proper body fluid levels and defend against infections.

The numbers of people affected by the condition are difficult to come by. Estimates range from 35% to 45% of women treated for breast cancer -- a large number in itself considering that about 2.4 million women alive today have had breast cancer, according to the Centers for Disease Control and Prevention. This population is more commonly affected, since lymph nodes may be removed during treatment, thus slowing the entire system.

The lymphedema network has had a patient questionnaire on its Web site since 2001. Respondents are about equally divided as to whether they have primary lymphedema, which is congenital; or secondary, which seems to be due to a trauma, such as surgery.

But even that distinction has blurred as researchers are beginning to understand that everyone's lymph system is not created equal, Dr. Fife said. One person may have a fantastic drainage system that can continue to function well despite a huge assault, such as a radical mastectomy. Another person's system may be less robust and be disrupted by a minor injury.

Regardless, any slowdown can lead to the pooling of lymph and its cargo of protein molecules, salts, glucose, urea and other substances. The system carries several liters of fluid a day. An obstruction could result in tremendous amounts of fluid building in the body.

Another consequence of obesity

The rise in obesity is also contributing to the numbers of lymphedema patients. Ten years ago Dr. Fife didn't have any patients who weighed 500 pounds. Now, 2% or more of her patients are at this weight or heavier.

Why morbid obesity leads to lymphedema is unknown, but one theory is that fat may block the system. "So as everyone gets fatter, we have more lymphedema," Dr. Fife said.

Once a swelling has occurred, avoiding any stress on that body part is essential for preventing recurrences. Patients who have had lymphedema should not have a blood pressure cuff wrapped around the affected limb, or have injections or blood draws, Thiadens said. Go to the opposite arm or the leg.

Although there is no cure, controlling the swelling is important. Swelling can become permanent and cause irreversible limb distortions. In addition, other skin conditions can develop, including cellulitis. Plus, the body's defenses are impaired. One of Dr. Fife's patients, for instance, reads meters for the gas company. While tramping through backyards all day, he is bitten by mosquitoes and fire ants, and those bites often lead to infections and hospitalizations.

Treatment for lymphedema is a gentle massaging technique, called manual lymphatic drainage, which encourages lymph flow. Once a limb is reduced to near-normal size, efforts switch to compression bandages and garments to keep the swelling down.

Although lymph flow maps, complete with roadblocks, have not been available for years -- an earlier mapping technique had been painful and dangerous and was abandoned -- promising research is under way at Baylor College of Medicine, Houston.

Fluorescent dye is injected just under the skin, picked up by the lymphatics and transported throughout the system, said Eva M. Sevick-Muraca, PhD, professor of radiology at Baylor and principal investigator for the study. Its path is illuminated by shining near-infrared light on the skin. The light can penetrate several centimeters of tissue.

The technique, developed with funds from the American Cancer Society and the National Institutes of Health, has been tested in a phase I trial with normal subjects because, "We don't even know what normal lymph flow looks like," Dr. Sevick-Muraca said.

Researchers are beginning to test the system on lymphedema patients, specifically attempting to determine if lymph flow is enhanced by massage. "We image before, during and after the massage and see if the lymph is being pushed into the correct nodal basin," she said.

By Susan J. Landers, AMNews staff, 2007.

ADDITIONAL INFORMATION:

Lymphedema alert

Certain factors can lead to the development of lymphedema and may provide alerts to the cause of swelling in the arms, legs or other body parts. No diagnostic tests are available, but risk factors include:

• Breast cancer, if the patient received radiation therapy or had lymph nodes removed. Radiation therapy to the underarm area after surgical removal of the lymph nodes. Having a larger number of lymph nodes removed increases risk.
• Surgical removal of the lymph nodes in the underarm, groin or pelvic region.
• Radiation therapy to the underarm, groin, pelvic or neck regions.
• Scar tissue in the lymphatic ducts or veins and under the collarbones, caused by surgery or radiation therapy.
• Cancer that has spread to lymph nodes in the neck, chest, underarm, pelvis or abdomen.
• Tumors growing in the pelvis or abdomen that involve or put pressure on the lymphatic vessels and/or the large lymphatic duct in the chest and block drainage.
• Having an inadequate diet or being overweight may delay recovery and increase the risk for lymphedema.

Source: National Cancer Institute

Lymphadema Treatment

Treatment of Lymphedema

Although lymphedema may have different causes, the treatment for all types is the same

Unfortunately, there is no cure for lymphedema. Treatment for lymphedema focuses on minimizing the associated symptoms. When a person is afflicted lymphedema, they should speak to their doctor, who will advise the most beneficial methods of treatment. If your doctor initially is hesitant to recommend treatment, I encourage you to persist. Lymphedema is an under-recognized problem that slowly and insidiously develops into a worse and worse problem. Getting treatment as soon as possible will greatly increase your quality of life!

The following are all methods of treatment a person can pursue:

• Gentle exercise, such as squeezing the muscles, which may help fluid in the affected area dissipate,
• Bandage wrappings applied to the arm or leg promote movement of accumulated fluids away from the affected area,
• Compression stocking or sleeves, worn on the arms or legs, respectively, are another way to promote movement of accumulated fluids away from the affected area, and help reduce swelling.
• A pneumatic compression sleeve is worn on the arm or leg and connected to a pump which inflates the sleeve and puts gentle pressure on the affected limb. These pneumatic compression sleeves help encourage fluid to flow away fromfingers and toes, thereby reducing swelling in the limbs.

A massage designed specifically for those suffering from lymphedema called manual lymph drainage can help dissipate fluid in an affected limb. This massage technique may not be appropriate for everyone with lymphedema.

Decongestive therapy is designed to unblock and increase the flow of the lymphatic fluid away from the extremities. Professionals use a variety of exercise, massage and compression wraps and garments to manipulate the fluid and reduce the swelling. The massage doesn’t actually move the fluid manually it facilitates the lymphatic system so that it can pump. Complete decongestive therapy works in two phases. The first phase involves moving the lymphatic fluid out of the affected region and thus reducing the swelling, using compressive bandaging and massage to move the fluid. Once the fluid is moved, the patient is fitted with a graduated compression garments to keep the swelling at a minimum.

In rare instances where lymphedema is deemed severe, a doctor may recommend surgery to remove excessive tissue in the affected area. This procedure reduces the swelling associated with lymphedema, but cannot cure it. This course of action is usually thought to be more harmful than helpful as it can make the lymphedema worse, because it tends to strip away the lymph system that can move fluid away from the affected area. This “solution” should be carefully considered if it is recommended and I would suggest that anyone who is told to have this surgery should get a qualified second and third opinion.

Persons who have been treated for cancer should take special care of the limb or limbs involved, to reduce their risk of developing acquired, or secondary, lymphedema.

Decongestive Therapy

Massage and physical therapies have been used with variable effectiveness in treating lymphedema. Complex decongestive physiotherapy includes “Manual Lymph Drainage,” bandaging garments such as elastic wraps, and exercises. Complex decongestive physiotherapy requires therapy that is usually performed by physical therapists who specialize in lymphedema treatment, and some rehabilitation centers offer this specialty treatment.

Currently, the position paper of the International Society of Lymphology recommends complex physiotherapy by a physician, nurse, or physical therapist who has been professionally trained. It should be noted that compression bandaging, if done incorrectly, may be harmful or useless.

Complex physiotherapy treatment consists of two phases. The first phase involves preventive skin care, manual lymph drainage, range-of-motion exercises, and compression with multilayer wrapping. The second phase, which must be initiated promptly after phase one, includes use of a compression sleeve, remedial exercise, and repeated light massage as needed. Cancer patients are advised to wear the compression garments when flying because pressure changes may trigger lymphedema, even if not present before.

Note:
Pneumatic compression devices have been used for treating lymphedema, but insufficient evidence exists to support or reject this treatment. In addition, these devices are expensive and can cause cases of cellulitis or deep vein thrombosis. These devices are not recommended by most professionals.