My lymphoscintigraphy (LAS) results showed no lymph vessels in legs

Q: My lymphoscintigraphy (LAS) results were interpreted and I was told that I have no lymph vessels in my legs. Can this be true?

A: No, this cannot be an accurate interpretation of your results, but rest assured, many patients have echoed your comments "precisely" in my experience. LAS measures uptake and transport of lymph over a period of time. A radioisotope, which can only be absorbed by lymphatics due to its molecular size, is injected into the system, usually at the toes, and diffuses into the swollen tissues. Radiological pictures are taken to mark the progression of the radioisotope over time.

I would first like to comment that sometimes LAS test results are misinterpreted simply due to the medical profession's inexperience performing this particular test. There are very few physicians who specialize in lymphology, much less call for routine LAS for his/her lymphedema patients. As such, it is quite unlikely that any patient would find a local facility specialized in providing this test, which is then followed by informed interpretation of the results.

Oftentimes, as so many of us realize, lymphedema as a disease condition is mislabeled and misunderstood. Commonly, whole batteries of tests are conducted to rule out other disease conditions including: deep vein thrombosis (DVT), heart disease (such as Congestive Heart Failure [CHF]), cancer, and liver failure, to name a few. Most would agree that it is prudent to run these tests to rule out serious additional health concerns and, once other problems are dismissed, lymphedema is generally considered a diagnosis of "exclusion" (everything else that could cause swelling has been ruled out).

One of the greatest problems encountered is that there are no agreed upon standards for administering LAS such as: time interval between injection to first image; second image and last image; amount of activity (movement/ exercise); type and duration of activity during periods between imaging, etc.

Another problem is that, unlike MRI, CT scan and dye injections, LAS does not provide a clear, resolute picture, but rather, shows a hazy image that requires a trained eye to interpret.

So why would you be told that there are no lymph vessels in your legs? The answer, again, becomes a matter of interpretation. When the injection is performed, a radioisotope, which can only be absorbed by lymphatics due to its molecular size, diffuses into the swollen tissues. Since lymphedema involves "stagnant" tissue fluid and poor transportation of lymph, it stands to reason that the injected solution would give a picture of little to no movement (i.e. Haze).

Furthermore, everyone has lymph vessels throughout the body since to be born without them would render the human being lifeless. In primary lymphedema, we know that, most often, less vessels and nodes exist and that the size/ caliber of these tissues is smaller than normal, therefore less uptake of lymph is seen and transport is sluggish. In secondary lymphedema, usually the lymph nodes are either damaged or removed causing many blocked connections from the vessels that were attached. In either situation, lymph vessels do indeed still exist; however, their function may be quite inadequate. If sufficient time is not taken during the LAS to record movement of tracer, then one could conclude that no vessels are working. However, in all cases, even when sufficient damage has been sustained, the lymphatic system is laboring to transport fluid wherever healthy vessels still exist. Perhaps two hours after the injection has been performed, tracer will be seen in other body areas indicating that it has made its way into the bloodstream via the thoracic duct.
It is important to address this misconception to clarify that lymphedema is nearly always treatable. It remains treatable even in the most advanced cases due to the ability of our lymphatic system to be "re-awakened" with proper stimulation, and to work more efficiently and effectively. Manual Lymph Drainage (MLD) has been shown to make vessels contract more frequently, thus propelling fluid through once fatigued vessels. Exercise within a compression bandage further stimulates vessel activity. So to be clear, vessels always exist, but they may not be visualized by LAS because LAS measures uptake of fluid and transport over time.

January-March 2006Steve Norton, CLT-LANA

NLN Question and Answer

The National Lymphedema network

I Have Lymphedema Should I Take Antibiotics Before Dental Work?

I Have Lymphedema Should I Take Antibiotics Before Dental Work?
This is a frequent question that arises in all the online lymphedema support groups. My own personal opinion is that it depends upon your personal history with infections and with the stage of your lymphedema.

My preference is to take a prophylactic course anytime I have dental work. This is because I have such a difficult time with and am so very susceptible to cellulitis. Also, because a lymphedema limb is already immunocompromised, the risk of a dental infection spreading to the effected limb is a much greater risk.

Here is an excellent question and answer from the National Lymphedema Network's Q&A section on their website.

Dr. Kathleen Francis is the responder to the question:

Q: I have primary lymphedema of my left leg and had one episode of cellulitis in my leg about 7 years ago. I have to undergo dental treatment soon and have heard that I will need to take antibiotics before the procedure to avoid getting an infection. Is this true?

A: The answer to your question is not a simple one, unfortunately. The question of antimicrobial prophylaxis has been a controversial one for years and recommendations are still evolving. Although prophylaxis in certain groups has become generally accepted, not all applications have been proven. I will quote from an excellent review article on antibiotic prophylaxis in dentistry by Tong and Rothwell in the journal of the American Dental Association in 2000:

"There is a long held belief in the theory of focal infection such that subclinical infectious foci in the oral region .result in systemic illness or cause disease processes in distant locations. Although generally regarded as not having scientific merit, this concept often drives recommendations for the use antibiotics prophylaxis. As a result, dentists and physicians tend to use antibiotics in situations in which there are no clear scientific bases."

One group for whom antibiotic prophylaxis is very well documented in the literature is persons at risk for infective endocarditis (IE), an infection of the lining of the heart or heart valves that can be life-threatening. Those at highest risk for endocarditis include persons with prosthetic cardiac valves, previous endocarditis, severe congenital heart disease, some heart valve disorders, or certain types of pulmonary or ventricular shunts.

Those dental procedures that appear to carry the highest risk for susceptible patients include dental extraction, periodontal procedures such as surgery or scaling, certain endodontic surgery, dental implants and reimplantation, initial placement of orthodontic bands, interligamentary local anesthetic injections, and prophylactic cleaning with anticipated bleeding.

The trend over recent years has been to recommend antibiotic prophylaxis in dentistry for fewer conditions. The American Academy of Orthopedic Surgeons now recommends against routine antibiotic prophylaxis in patients with prosthetic joint replacements. This arose, in part, from studies showing that the risk of death from severe reactions to antibiotics actually far outweighed the risk of late prosthetic joint infection.

In returning to your specific question, the answer at this time is that there is no specific scientifically supported recommendation for antibiotic prophylaxis for dental procedures in patients with lymphedema, all of whom have some risk of cellulitis in the affected limb due to a compromised lymphatic system. Bear in mind that some reactions to antibiotics can be fatal, whereas cellulitis is almost never life-threatening.

The bottom line is that without good scientific studies examining the question of prophylaxis and lymphedema, individuals with lymphedema planning to undergo dental work should be evaluated carefully by a physician to determine the relative risks and benefits of antibiotic prophylaxis in each particular case. My bias is to use antibiotic prophylaxis only for those high-risk dental procedures described above in a few patients who continue to have multiple recurrent episodes of severe cellulitis in the lymphedematous limb or those who have developed cellulitis following a dental procedure in the past. However, different physicians have different approaches to this, and you need to speak with your own physician and dentist who have insight into your particular medical history.

Lymphedema Call to Action - Lymphedema Stakeholders

Lymphedema Stakeholders, Inc. is proud to announce that Senator Craig Thomas (R–Wyo.) introduced federal legislation on Thursday, September 28, that will enable ALL state licensed or certified therapy providers to once again provide physical medicine and rehabilitation services to Medicare beneficiaries under the supervision of physicians in “incident to” reimbursement situations.

The Access to Physical Medicine and Rehabilitation Services Improvement Act of 2006 (S.3963) will restore physician choice of whom they can hire to provide services to their Medicare patients. This includes lymphedema therapists that are RN’s, LPN’s and LMT’s.

This legislation is an important step to ensuring Medicare beneficiaries access to quality health care and restoring physician choice of therapy providers working under their supervision.

The second part of the bill makes lymphedema therapists covered providers for the purposes of Medicare reimbursement. It is believed that lymphedema therapists represent a great opportunity for cost savings to the Medicare program. Secondly, breast cancer survivors suffering from lymphedema have lost access to more than one-third of these specially trained therapists because of the Medicare rule.

We need your help with the following:

What to do this week:

· Immediately activate your grassroots in Wyoming. We’ve already encountered strong opposition to this legislation. Ask your members and contacts (patients, too!) in Wyoming to attend town hall meetings to demonstrate their support of this legislation and Sen. Thomas’ bold leadership. The web form page is here:

Wyoming members or anyone knowing anyone in Wyoming should immediately call or write Erin Tuggle at (202) 224.6441 and tell her how much they appreciate Senator Thomas’ support of your profession. Erin is Sen. Thomas’ legislative aide. For your members outside of Wyoming, a quick e-mail thank you will be helpful.

· Call or write Sen. Alren Specter and thank him for co-sponsoring S.3963. (202) 224-4254

Call or write Sen. Jim Bunning and thank him for co-sponsoring S. 3963. (202) 224-4343

What to do in the coming weeks and months:

· Make an appointment to see your congressperson while they are in his/her district campaigning (October-early November). A meeting with your representatives in your hometown will make an impact. Use the attached talking points

· Make future contacts with your home senators and representatives and ask them to co-sponsor or support S.3963. The more co-sponsors we have, the more likely it is our legislation will be successful. This can be a telephone call, a letter, an email, or an in-person visit. This will be a sustained campaign and I’ll be in contact with you regularly to request your help.

· Contact the Coalition to Preserve Patients Access Organizer (Cate Brennan Lisak - 800.879.6282 ext. 148) if you plan to travel to Washington D.C. She will assist you with getting appointments with your congressperson and talking points, etc.

· Get your physicians, other health care providers and patients involved.

Thank you for your support and contribution of your valuable resources. On behalf of Lymphedema Stakeholders and the Coalition to Preservice Patient Access to Physical Medicine and Rehabilitation Services we are grateful for your support. We believe that together we can get the unfair and ill-advised therapy-incident to rule corrected and improve patient care. Our opposition wants to continue to limit patient access to quality health care and not allow physician choice of who can provide therapy services. They are spreading misinformation about the educational and clinical qualifications of therapy providers like you, and we need each other’s commitment to action.

Respectfully submitted,

Cheri L. Hoskins, CCT
President, Lymphedema Stakeholders

REMINDER - 9th State of Georgia Lymphedema Education & Awareness Day

9th State of Georgia Lymphedema Education & Awareness Day

MARK YOUR CALENDERS!

Our conferences here in Georiga are absolutely fantastic and there is no charge. The only expenses you might have would be the lunch and/or lodging if you come from out of town.

Last year we had Dr. Kathleen Francis updating us on research. She was great...totally cool person too!!!! Here's the scoop on this years conference: 9th State Of Georgia Lymphedema Education & Awareness Day

Sponsored by

Lighthouse Lymphedema Network

Luncheon & Program

Saturday, October 28, 2006 9:00 a.m. - 3:00 p.m. at the Renaissance Waverly Hotel 2450 Galleria Parkway, NW - Atlanta, GA

Speaker: David N. Finegold, M.D.

Some topics to be discussed:

· The genetics of primary lymphedema
· Post-mastectomy secondary lymphedema
· The future of lymphatic research

Our sincere thanks to the following businesses for their financial support of this educational seminar.

Please stop by the tables and see the services and products provided by our supporters for the treatment of lymphedema and related conditions.

· A Woman's Place - Northside Hospital
· BSN-Jobst
· CircAid Medical Products
· Compass Healthcare, Inc.
· Compression Design
· Drapers Fitness & Rehab Consulting
· Gwinnett Medical Center
· Juzo · Medi, USA
· Peninsula Medical (The Reid Sleeve People)
· Sigvaris, Inc.
· Solaris, Inc. (Tribute/Swell Spots)

Be there or be square

NLN - Parents' Lymphedema Action Network

NLN - Parents' Lymphedema Action Network

Announcing

An incredible opportunity for parents of children with lymphedema to participate in live telephone conferences specifically designed to help our children with lymphedema.

We are very excited about this and encourage all our visitors who have children with LE to support and participate in this wonderful program.

For complete information, including how to register, forum schedules and how to participate please visit:

NLN - Parents Lymphedema Action Network

This first conference is coming up on October 6th, 2006:

Topic: Garments, bandages & alternative products

Guest Speaker: Guenter Klose, CI, CLT-LANA (bio)

Email Questions to: guenter@klosetraining.com (Subject: PLAN Forum Oct 06)

Conference Call: Wednesday, October 18, 2006 at 3:00 pm PST

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We Support - The National Lymphedema Network

A Swell Condition That’s Not So Swell

A Swell Condition That’s Not So Swell

written by Julia Auton

Controlling lymphedema

One of the greatest frustrations breast cancer patients have about treatment is getting the right information through every step of the process—and this includes after treatment ends. One area where myths and misinformation dwell is the subject of lymphedema. What is it? Who gets it? What can be done about it? And, is there a cure?

In our culture of mass media, you would think there would be ample information about this condition. But treatment for lymphedema only reached the U.S. fairly recently, within the last decade, after it was developed in Europe.

Common myths include:

· You can’t get it if you’re young.
· If you don’t develop the condition immediately after surgery, then it will never be a problem.
· Lymphedema will eventually go away on its own without treatment.

My main source of information—and misinformation--came from hearsay from others and whatever I could find on the Internet. Even healthcare professionals were not forthcoming about the risks and precautions. I was told I was “low risk” because I was young and in good shape from exercising regularly. I was advised to do whatever I could to prevent infection in my right arm (where I had 37 lymph nodes removed) by wearing gloves during yard work, and avoiding blood pressure screening and shots or blood work in that arm.

So, I go tra-la-la-ing into the future, unknowingly engaging in every behavior that put me at risk for developing lymphedema. One day after many hours of pulling weeds—with gloves—I notice my lower arm and hand were swollen, resembling a Cabbage Patch doll, a telltale sign of lympedema’s arrival.

To save you the frustration of separating fact from fiction, I talked with Carol Crochet, a physical therapist specializing in treating lymphedema at the Rehab Results Group at DeKalb Medical Center in Atlanta, GA. DeKalb was the second center in metro Atlanta to offer a treatment program in 1997.

The good news, she told me, is lymphedema can be treated. The bad news is there is no cure. Once you have this condition, it never goes away entirely. But, the sooner you seek treatment, the greater your chances are for getting--and keeping--it under control for the rest of your life.

What is it?

Lymphedema is any accumulation of fluid in the arm where you have undergone surgery and/or radiation therapy for breast cancer. Whether it’s a mild case or your arm is extremely enlarged, if there's swelling, you have lymphedema.

"This abnormal accumulation of high protein fluid is caused by the malfunctioning of lymphatic system, which can no longer effectively move lymph fluid throughout your body," Crochet explains.

Who gets it?

"Approximately 30% of breast cancer patients develop lymphedema," Crochet says. But, there are no known indicators at this point as to who develops it. You can have lymphedema, even if you--
-
only had a few lymph nodes removed,
-
are young,
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are not overweight and exercise regularly,
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didn’t develop it right after surgery—it can occur any time over your lifetime.

What causes it?

Any stress can bring on lymphedema, such as --
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Infection—due to burns, insect bites, cuts or injury,
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Heavy lifting,
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Temperature extremes (hot or cold),
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Drop in air pressure (such as during flights),
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Straining your arm due to carrying heavy shoulder bags or luggage, and overusing your arm during repetitive physical activity.

How can you reduce your risk?

Take care of your treated arm, Crochet emphasizes. This covers everything from avoiding needles in your "vulnerable" arm to not carrying a heavy purse over your shoulder. But, it also includes lesser-known behaviors – like, burning your arm when reaching into the oven, or experiencing hot temperatures from a sauna or whirlpool.

The key is proper skin care— since it's your protective layer—to prevent any opening, where bacteria can enter and cause infection through cuts, scrapes and burns. This means keeping your skin clean and moisturized daily.

Additional ways to keep lymphedema infection away include–
-
wearing gloves during housework and yard work,
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not cutting your cuticles,
-
using insect repellent to prevent bites,
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using an electric razor for shaving under your arms and wearing antiperspirants without aluminum.

Also, avoid stress on your "vulnerable" arm, which means taking frequent breaks when you're involved in intense, physical activity.

However, if the inevitable happens, and swelling occurs, seek treatment quickly with an occupational therapist (OT) or physical therapist (PT) who specializes in lymphedema.


How is it treated?

Treatment involves an evaluation, patient education and therapy.

"Patient compliance is critical for achieving optimal results with lymphedema treatment," says Crochet. " Patients must come in for treatment every day for two to four weeks--or longer--and treatment takes approximately one and a half hours. Then, patients must wear the compression bandages when not at the clinic.”

Treatment programs can take the form of complex lymphatic therapy (CLT), which is the Australian version, or complete decongestive therapy (CDT), which is the European protocol. Both programs consist of bandaging, exercise, manual lymphatic drainage (massage), skincare precautions, and instruction in a home program.

Once the swelling is reduced and you plateau, you’re ready for the maintenance phase. Managing your condition involves performing the exercises and self-massage at home, and wearing a compression sleeve.

"It’s recommended that you wear the compression sleeve all day, every day as part of your normal routine," says Crochet. "There are also nighttime garments, if lymphedema is harder to control. Women without lymphedema but who are at risk for developing it should also wear a compression sleeve when conducting any physical activity to prevent swelling, as well as during flights, since the drop in air pressure in the cabin can trigger swelling."

Also, note that the material the compression sleeves are made of are only guaranteed to be effective for six months and must be washed daily, so it’s suggested that patients buy two and alternate wearing them. (Note: Medicare and Medicaid don’t cover the cost of sleeves and only a limited number of private insurers do.)

Women suffering from lymphedema should also eat a healthy diet, manage their weight, and engage in regular cardio exercise, such as walking and swimming.

“Exercise causes your respiration rate to increase, so you breathe more deeply, and this stimulates your lymphatic system to move lymph fluid throughout your body,” Crochet explains.

With all the time and effort involved, treatment appears to be a daunting task. But, Crochet warns, over time, lymphedema that is not controlled through treatment can worsen—setting off more discomfort, disfigurement and pain—and become even more fibrotic, causing the tissue to feel harder. And, at least that is enough incentive for me to comply.

BreastCareSite

Hereditary lymphedema type I associated with VEGFR3 mutation: the first de novo case and atypical presentations.

Hereditary lymphedema type I associated with VEGFR3 mutation: the first de novo case and atypical presentations.

October 2006

Ghalamkarpour A,
Morlot S,
Raas-Rothschild A,
Utkus A,
Mulliken JB,
Boon LM,
Vikkula M.

Laboratory of Human Molecular Genetics, Christian de Duve Institute of Cellular Pathology, Universite catholique de Louvain, Brussels, Belgium.

Mutations in the vascular endothelial growth factor receptor 3 gene, VEGFR3/FLT4, have been identified in a subset of families with hereditary lymphedema type I or Milroy disease (MIM 153100). Individuals carrying a VEGFR3 mutation exhibit congenital edema of the lower limbs, usually bilaterally and below the knees, sometimes associated with cellulitis, prominent veins, papillomatosis, upturned toenails, and hydrocele.

In this study, we report the first de novo VEGFR3 mutation in a patient with sporadic congenital lymphedema. We also describe three other families with a VEGFR3 mutation. In each family, one individual had an atypical clinical presentation of hereditary lymphedema type I, whereas the others had the classical VEGFR3 mutation-caused phenotype. The atypical presentations included pre-natal pleural effusion, spontaneous resorption of lymphedema and elephantiasis. Three of the four identified mutations were novel. These data show that de novo VEGFR3 mutations may be present in patients without family history of congenital lymphedema. This has implications for follow-up care, as such individuals have nearly a 50% risk for occurrence of lymphedema in their children.

Our findings also indicate that although most patients with a VEGFR3 mutation have the well-defined phenotype for hereditary lymphedema type I, there are exceptions that should be considered in genetic counseling. Because VEGFR3 mutation can cause generalized lymphatic dysfunction and can thus result in hydrops fetalis, VEGFR3 screening should be added to the investigation of cases of hydrops fetalis of an unknown etiology.

PMID: 16965327 [PubMed - in process]

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Wide clinical spectrum in a family with hereditary lymphedema type I due to a novel missense mutation in VEGFR3.

August 2006

Spiegel R,
Ghalamkarpour A,
Daniel-Spiegel E,
Vikkula M,
A Shalev S.
Genetic Institute, Ha'Emek Medical Center, Afula, 18101, Israel.
Hereditary lymphedema type I (HL-I), also known as Milroy disease, is an autosomal dominant disorder characterized by typical phenotype of infantile onset lower-limb lymphedema accompanied by variable expression of recurrent episodes of cellulites, toenail changes, and papillomatosis. Mutations in the vascular endothelial growth factor receptor 3 (VEGFR3), also known as FLT4 gene, which encodes a lymphatic endothelial-specific tyrosine kinase receptor, have been identified as a genetic cause of HL-I. We report a large Muslim Arab family residing in northern Israel with 14 individuals presenting clinical features of HL-I. Genetic analysis revealed novel missense mutation E1106K in the tyrosine kinase domain II of VEGFR3 that cosegregates with the disorder in the family. Most affected individuals presented with bilateral congenital lower-limb lymphedema. Wide intrafamilial phenotypic variability included two asymptomatic individuals, a case of prenatal hydrothorax evolving to hydrops fetalis, and a late-onset complication, yet unreported, of chronic degenerative joint disease of the knees. This report broadens the known "classic" phenotype of HL-I.

PMID: 16924388 [PubMed - as supplied by publisher]

Exercise, Lymphedema, and the Limb at Risk

Exercise, Lymphedema, and the Limb at Risk

Bonnie B. Lasinski, MA, PT, CLT-LANA

How many clinicians are at a loss for words when they are asked about what kind of exercise is "good" for individuals with lymphedema? How many individuals living with lymphedema or a limb at risk for lymphedema have asked their healthcare professional for advice concerning exercise only to receive conflicting information? It is difficult to "recruit" presenters to provide workshops/discussions on exercise for both patients and professionals alike. Exercise and lymphedema - it is a controversial subject.

Twenty-four years ago, I was asked to do a presentation on exercise after mastectomy for a one day seminar sponsored by the American Cancer Society's Long Island Division, entitled "Living With Cancer". When I contacted the coordinator of the workshop, Diana Rulon, she informed me that she was not "interested in exercise after mastectomy - she was interested in exercise for lymphedema!"

You can imagine my shock and fear at that moment. I had no special training in lymphedema management, in fact, no one did. We were just beginning to hear strange tales of a treatment from Europe that seemed ridiculously mild for the severe swellings I had seen in my limited experience. But, I figured no problem. I'll just go to the medical library, research the articles, and develop my talk from there. Well, that was 1980 and there were no articles, except for a few abstracts of German and French studies. Now, I was really in trouble. Well, long story short, I was inspired by the dedication of Diana Rulon who tried to find help for other women like herself, who had long been ignored by their doctors and told to live with their problem. Thus began my journey in lymphedema management.

Trial by fire, you might say! We presented a very basic, common sense talk on lymphedema, trying to define it in simple terms (no small feat when the literature was so poor - the definition at that time was a 2 centimeter difference between forearms - as if that was the only place one could have lymphedema!). Next, Diana presented some practical suggestions for nutrition that she had found helpful to her and several other women she knew. Finally, I wrapped up the session with some very basic information on exercise progression and then opened the floor for questions. The response was overwhelming. The participants were so grateful that their problem was finally acknowledged, even on such a basic level.

Twenty-four years later, although the medical management of lymphedema has come a long way, thanks in great part by the advocacy of Saskia Thiadens and the NLN, there is still much work to do. Basic and advanced research on the effects of exercise as a lymphedema risk reduction modality must be explored. The basic criticism of the precautions about exercise contained in the 18 Steps to Prevention of Lymphedema and other risk reduction guidelines is that they are "anecdotal" at the present time, due to the lack of controlled double-blind studies to prove their efficacy. Some medical professionals have taken the position that the individual with a limb at risk (or with lymphedema) should go ahead and pursue whatever exercise/activity they wish and "see what happens". Unfortunately, lymphedema is a chronic condition, which, presently, has no cure. While it is true that not all individuals who have had lymph node disruption (surgical or radiological) will develop lymphedema, until physicians can better predict who is at greater risk for lymphedema, a prudent approach to exercise is advisable. In the case of individuals with primary lymphedema or established secondary lymphedema, working up to a level of exercise that promotes fitness while avoiding exacerbating the lymphedema is a good goal.

I'm sure that some of you may have been told in the past that you should not exercise if you have lymphedema, or that certain types of exercise are contraindicated if you have lymphedema. This is not the case. I would like to review some basic principles of anatomy and physiology and pathophysiology of lymphedema and how these relate to exercise and lymphedema. Lymphedema occurs when there is an imbalance between lymph transport capacity and lymph load. After any surgical disruption or radiation treatment to a lymph node region, a state of latent lymphedema occurs. That is to say that the lymph transport capacity is reduced but it is still greater or equal to the lymph load. Acute/chronic lymphedema develops when that balance is shifted and lymph load exceeds the impaired lymph transport capacity. In the case of Primary Lymphedema, where there is a malformation/malfunctioning of the lymphatic transport system that results in a reduced lymphatic transport capacity, lymph load often exceeds that transport capacity, and progressive lymphedema develops over time.

Our lymphatic system, in addition to filtering out waste products, helps our bodies maintain fluid balance so that we are neither dehydrated nor edematous. 90% of the water component of our blood that perfuses the capillary network and nourishes our cells returns to the heart via the venous system. The 10% that is left behind in the tissues along with the extracellular protein that filters out of the capillaries, can only return to the heart via the lymphatics. That 10% can amount to up to 2 liters a day. While 2 liters may not seem like much, it adds up day after day, if there is impairment in lymph drainage. In addition, the extracellular proteins can only return to the central circulation via the lymphatic vessels. The diameter of these molecules is too large to fit into the openings in the vein walls - the openings in the lymphatic vessel walls are large enough for these protein molecules to enter easily.

So lymphedema is not only a problem of excess water remaining in the tissues, but of excess protein that remains in the tissues as well. Unfortunately, the body always moves for a state of balance so it actually tends to pour more water into the tissues to "dilute" this protein concentration - thus a vicious cycle develops. This problem is compounded by the fact that the white blood cells called macrophages, which are part of our immune response, do not work properly in the lymphedematous fluid. This is why anyone with lymphedema is at increased risk for infection in his or her affected limb.

What does all this have to do with exercise?

A review of the acute and chronic effects of exercise is helpful to understand how the limb at risk or a lymphedematous limb might respond to various types of exercise. The acute responses to exercise include increases in heart rate, stroke volume, cardiac output, blood flow to active muscles, systolic blood pressure, arteriovenous oxygen difference, ventilation, oxygen uptake, and a decrease in blood pH and plasma volume. Chronic adaptations to exercise include biochemical changes in skeletal muscles, decreased resting heart rate, decrease in total body fat, blood lipids, and the density and strength of bone and connective tissue. During exercise, blood is redirected to the muscles. At rest, only 21% of the cardiac output goes to the muscles, compared with as much as 88% during exhaustive exercise. As the body heats up, an increasing amount of blood is directed to the skin, to conduct heat away from the body core.1 Remember that lymph transport has to be equal to or greater than lymph load. When you exercise, your muscles need extra blood to supply the oxygen needed for your muscles to do the work of the exercise. Extra blood flow means that extra water will remain in the extracellular spaces needing transport via the lymphatic system.

The question is how much is too much? That is very individual. It is important that any exercise program be gradually progressed to avoid sprain/strain. More importantly, a slow progression allows the individual to monitor their affected limb or limb at risk for any sensation of aching or fullness that could indicate an overwhelming of the lymphatic system.

Exercise can increase the uptake of fluid by the initial lymphatics and enhance the pumping of the collecting lymphatics. In addition, exercise mobilizes the joints and strengthens the muscles of the involved limb/limbs/trunk quadrant, thus decreasing the risk of strain/sprain.2 Exercise is best done with compression on the affected limb either from compression bandages or compression garments. The bandages provide a new "tight" skin for the muscles to contract against, assisting in pumping the lymph out of the extremity into the central circulation.

When lymphedema exists, the remaining lymph vessels that are functioning are working double time to try to carry the load. These vessels become over dilated (stretched) and eventually, their walls can overstretch and fail, causing a worsening of the swelling. Wearing compression bandages/garments provides support to the skin and to the lymphatic vessels directly under the skin, called the superficial lymphatic network. It is these vessels that help to carry the load when the larger vessels have been cut away from the lymph nodes or have been damaged due to trauma or chronic venous disease, or in the case of primary lymphedema, when there are too few large lymph collectors in a region due to improper vessel/node development during fetal growth.

Of course, certain types of exercise are considered higher risk than others. For example, high speed activities like tennis, bowling and racquetball, place more stress on the upper limb while jogging, stair-climbing machines, downhill skiing, water skiing, football, soccer place more stress on the lower extremities or have higher injury risk than other activities such as swimming, brisk walking, and cycling. That is not to say that someone with lymphedema of the leg should not jog for exercise, or that the person with lymphedema of the arm and hand should not play tennis or golf. It is also important to know whether an individual was skilled at a sport/activity prior to their developing lymphedema. A sport-specific exercise program can be developed for the individual to build strength, flexibility and endurance in the muscle groups most used in that sport/activity. Ultimately, the decision to "play" should be an individual one, but an informed one.

Many men and women with lymhedema or a limb at risk want to work out with weights. A slow progression of light weights can be done safely and can allow an individual to develop good strength and power in any muscle group. The important thing to consider is whether you feel good after the exercise and how your affected limb reacts after you exercise. You must also consider your level of daily activity and modify accordingly - if you have had a particularly difficult day and your affected limb is more swollen, you may choose to do a different activity i.e. swim instead of walk, or you may realize that the best activity for that day is to rest with your limb elevated. The importance of deep abdominal breathing exercise should not be overlooked. Deep breathing enhances the pumping in the thoracic duct (the major lymphatic vessel draining the lower body and the left upper trunk/arm/hand).

A recent series of case reports published in the Journal of Surgical Oncology3 challenges the theory that vigorous upper body exercise is contraindicated for individuals who have had axillary dissection during surgery for breast cancer. The study followed a group of 24 women for 9 months. These women were recruited to participate in a training program to prepare for competition in the World Championship Dragon Boat Festival in Vancouver, British Columbia. Dragon Boat racing involves strenuous repetitive upper body exercise. 18-20 women paddle 40-60 foot boats for a distance of 500-650 meters. Circumferential measurements were collected on 20 of the 24 participants (limbs were measured at 4 places) pre training, at the start of the racing, and 7 months after the races. According to the authors, only two women, who had pre-existing mild lymphedema, had increases in their upper arms (5/8 inch) and none of the other participants developed lymphedema.

One of the authors of the study, herself a breast cancer survivor participated in the program. The authors conclude that strenuous upper body exercise may not cause lymphedema or worsen a pre-existing lymphedema.

It is important to note that the participants in this study completed a two-month training program of stretching, strengthening, and aerobic exercises prior to engaging in the actual strenuous activity of Dragon Boat racing. Many individuals who undergo breast surgery/axillary dissection/radiation are not enrolled in supervised progressive exercise programs like the participants of this study. Providing structured, individualized exercise programs should be a goal of all centers that perform cancer surgeries. While I do not discourage individuals from participating in sports and exercise, I do caution them that they should consider themselves "athletes" in the "game" of life. As such, each individual should engage in a stretching/strengthening program to prepare them for full participation in whatever activity they choose.

References:

1. Nieman, David C. Exercise Testing and Prescription: A Health Related Approach, 4th ed. Mountain View, California, Mayfield Publishing Co., 1999: P, 190-205. 2. Casley-Smith, Judith R, Casley Smith, John R. Modern Treatment for Lymphoedema, 5th ed. Adelaide, Australia, The Lymphology Association of Australia, 1997: p. 188-189. 3. Harris, Susan R, Niesen-Vertommen, Sherri. Challenging the Myth of Exercise-Induced Lymphedema Following Breast Cancer: A Series of Case Reports. Journal of Surgical Oncology 2000; 74:94-99.

Lymphedema Therapy

Lymphedema Exposition - Margate, Florida - Nov 9, 2006

Lymphedema Exposition - Margate, Florida - Nov 9, 2006

Free Community Event

THURSDAY, NOVEMBER 9, 2006

NORTHWEST MEDICAL PARK
2960 STATE ROAD 7, SUITE 104
MARGATE, FL 33063

8:30 am – 4 pm

SPEAKERS – VENDORS – RAFFLES – REFRESHMENTS

8:30 – 8:50 a.m. Exhibits

8:55 a.m. Opening Remarks

9-9:30 a.m. Stasis Dermatitis and Related Disorders of the Lower Extremities - Brad P. Glick, DO, MPH

9:35 – 10:05 Venous Ulcers - Robert J. Snyder, DPM

10:10 – 10:40 Breast Cancer and Lymphedema, Sentinel Lymph Node and Malignant Melanoma - David Porudominsky, MD

10:40 – 11 Break/Exhibits

11 – 11:30 Breast Cancer and the Environment Sandra Blank, Executive Director, Florida Breast Cancer Resource Network

11:35 – 12:05 Lebed Method – Therapeutic Exercise and Movement for Upper and Lower Extremity Lymphedema Sherry Lebed Davis, President

12:05-1:30 Lunch/Exhibits 1:30 – 2 Post Mastectomy Pain Syndrome - Andrew J. Goldberg, MD

2:05 – 2:35 “Life in the Flash Lane” – Menopause - Tara A. Solomon, MD

2:40 – 3:15 Treatment for Lymphedema and other edemas Cathy Kleinman-Barnett, MOTR/L, CLT-LANA, LMT, CLM

3:15 Closing Remarks/Raffles

3:30 – 4 Exhibits

RSVP: 954-978-4180

Make a Place for Your Illness and Put It in Its Place

Make a Place for Your Illness and Put It in Its Place

by Pauline A. Salvucci, MA, Self Care Connection

"A place for everything, and everything in its place." That may be a fine idea if you're eyeing the clutter on the living room floor, or a pile or two of old magazines and catalogues collecting dust in a corner. But what has it got to do with chronic illness? A lot.

Chronic illness is never a welcomed guest in anyone's life. However, when it becomes a visitor in yours, in many cases, it's there to stay. How you cope with your illness will determine, in great part, how well you live your life. Of the three primary factors which measure your ability to cope: your attitude, the social context of your life, and the quality of resources available to you, your attitude becomes the foundation upon which the others build. Making a place in your life for your illness may sound like a strange thing to do, but it's a crucial step in learning how to cope with illness and putting it in its place. Here are some suggestions:

Acceptance and denial are normal steps toward making a place for illness

When you begin to accept your illness, you open yourself up to see what's on your plate. Then you can begin to interact with it and make a place for it. When you deny your illness, you close yourself off to yourself, and you shut down. Feeling both acceptance and denial are normal responses to chronic illness. Being sick makes you different from healthy people. And, if your illness isn't visible, you may deny it more than if it were. Accepting illness is a process. It doesn't happen all at once. Don't be harsh on yourself when you fluctuate between accepting your illness and denying it. Acceptance isn't something you do once and for all. Acceptance lives in the present moment. Little by little as you accept your illness, you make room for it in your life.

Adapting to change takes time and patience

Like an onion, you peel off one layer of change at a time. The changes you often are faced with will stretch and challenge your ability to adapt. You may have to let go of, or even say goodbye to some parts of your life, either for a time, or perhaps permanently. Grieve this loss. Perhaps create a ritual to say goodbye, but don't deny those parts of your life which you enjoyed and which were important to you. They are a very real part of your history and deserve your respect. Your life is different than it was before you became ill, but don't treat your past and the things you enjoyed as if they never existed. As you make the changes your illness requires, you can become more flexible and creative in adapting to change. An idea that may help you is to keep a journal of the changes you've already made and how you made them. This can serve as a reminder of your accomplishments, and as a guide for making other changes. As you develop a greater degree of flexibility in adapting to change, the easier change becomes.

Befriend your illness as a part of your life

Chronic illness is your daily companion You already know how it affects your body. Now get to know what you feel and think about it, and especially how you treat it. If you consider your illness an enemy to be crushed, or an unwelcomed guest which you refuse to tolerate, or even an interloper you must annihilate, how will you allow your illness to be what it is, a part of your life which you can learn to befriend? Do you remember what Lincoln said about a house being divided against itself unable to stand? If you're divided against yourself by refusing to knowyour illness, or by waging war against it, how will you come to befriend it? Consider giving your illness a name and talking with it. Speak from your heart and your passion. Write down everything you think and feel about it. Don't keep your thoughts running around in your mind creating havoc. Then, listen to what your illness says to you in return. If you find this difficult to do, don't be discouraged. It is difficult, but there are rewards. An uneasy alliance is better than none at all.

Do you feel as if you're losing yourself?

Do you feel as if your blue moods are turning into dark depression? Is inertia increasingly becoming more a part of your life? Do you do less for yourself on the days when you could be doing more? Do you isolate yourself from your loved ones and friends? If over a period of time, you are regularly experiencing these feelings and can't shake them, don't hesitate to find professional help. Ask your doctor to refer you to a therapist whose specialty is working with people with chronic illness. These therapists can help you to make your way through difficult times. Yes, it's important to talk with your friends and family, but talking with a professional can be very freeing. They are available to help you sort out your experiences and the many feelings and thoughts you have about yourself and your illness. This isn't the time to "tough it out", or attempt to dismiss your feelings with a mind over matter mentality. Allow yourself to get whatever help you need. It can make a real difference in your life.

How often during the course of a day do you talk about your illness or refer to it?

Do you feel it's taking more of your time and energy than you would like it to? That can happen, especially when you are initially diagnosed and you're learning about your illness and trying to figure out your relationship with it. If it becomes a habit, and you feel as if you're losing perspective, here's a way to regain your balance. Create "talk space". Choose a comfortable place in a room in your home and make time to talk about your illness with your partner and your family. Let them know what you're experiencing and thinking. This is a time for honest sharing, for you and for your loved ones. Allow this "talk space" to be the place and time where you discuss your illness. Keep the rest of your home an "illness free talk zone". This will allow you and your family to enjoy one another's company and conversation without reverting to the topic of illness.

Seeing with new eyes doesn't mean looking through rose colored glasses

When it comes to putting your illness in its place, you might try seeing with new eyes. When it takes you more time to do just about everything, when simple tasks frustrate you because they're not so simple to do anymore, when the familiar becomes foreign, when you can not do the many things you once loved doing, maybe seeing with new eyes can help. If you were an artist and can no longer paint, you can still go to museums or art galleries. If you can't do that, you can enjoy art on the Internet since it offers you access to the world's best museums, galleries and art exhibits. If you worked with your hands and can no longer use tools to do a job or hobby, teach someone else to do what you know how to do so well. Share your knowledge and lend your expertise. If you loved nature and the outdoors, but can no longer hike, drive along some of the scenic roadways and enjoy the beauty and majesty of nature. Find a way to keep what you have been passionate about in your life. It takes time, work, patience, spirit and heart to make a place for illness in your life. Seeing with new eyes is both a tribute to courage and the ability to put illness in its place.

Recommended Books:

Self-Care Now! 30 Tips to Help You Take Care of Yourself When Chronic Illness Turns Your Life Upside Down by Pauline Salvucci

Self-Care Now! 30 Ways to Overcome Obstacles That Prevent You From Taking Care of Yourself by Pauline Salvucci

Self-Care Now! 30 Tips to Help You Take Care of Yourself & Minimize Caregiver Burnout by Pauline Salvucci

9th State of Georgia Lymphedema Education & Awareness Day

9th State of Georgia Lymphedema Education & Awareness Day

MARK YOUR CALENDERS!

Our conferences here in Georiga are absolutely fantastic and there is no charge. The only expenses you might have would be the lunch and/or lodging if you come from out of town.

Last year we had Dr. Kathleen Francis updating us on research. She was great...totally cool person too!!!! Here's the scoop on this years conference: 9th State Of Georgia Lymphedema Education & Awareness Day

Sponsored by

Lighthouse Lymphedema Network

Luncheon & Program

Saturday, October 28, 2006 9:00 a.m. - 3:00 p.m. at the Renaissance Waverly Hotel 2450 Galleria Parkway, NW - Atlanta, GA

Speaker: David N. Finegold, M.D.

Some topics to be discussed:

· The genetics of primary lymphedema
· Post-mastectomy secondary lymphedema
· The future of lymphatic research

Our sincere thanks to the following businesses for their financial support of this educational seminar.

Please stop by the tables and see the services and products provided by our supporters for the treatment of lymphedema and related conditions.

· A Woman's Place - Northside Hospital
· BSN-Jobst
· CircAid Medical Products
· Compass Healthcare, Inc.
· Compression Design
· Drapers Fitness & Rehab Consulting
· Gwinnett Medical Center
· Juzo · Medi, USA
· Peninsula Medical (The Reid Sleeve People)
· Sigvaris, Inc.
· Solaris, Inc. (Tribute/Swell Spots)

Be there or be square

Treatment of Pediatric Lymphedema

The Treatment of Pediatric Lymphedema

by Steve

Any discussion of pediatric lymphedema must include information about our most current scientific understanding of the underlying causes. Pediatric lymphedema may be uncomplicated in its presentation, akin to a benign adult primary lymphedema, or may indeed be very medically complex. One must assume in any pediatric form of lymphedema that there is either a defect in the normal development of lymphatic tissue, or that the visible swelling may be one of the first signs and symptoms of malignant disease. For this reason no condition involving edema should be casually viewed or dismissed by the medical professional and immediate clarification as to the presence or absence of cancer must be investigated.

Classification

The two main classifications of lymphedema are primary and secondary and are labeled as such according to the cause of the lymphatic impairment. Primary lymphedema can be described as an inherent defect within the lymphatic tissue itself. This malformation may involve either the absence of tissue or a malformation of tissue, (usually lymph vessels) which results in the presence of abnormally high levels of proteins and tissue fluids within the tissue spaces (interstitium). Secondary lymphedema is always associated with a traumatic event or series of events. Causes include multiple infections of the skin or soft tissues, surgical removal of lymph nodes, as in cancer treatment, radiation therapy, acute thrombo-phlebitis (DVT) or other traumas. Again the consequence is similar (lymphedema) and results in a disturbance of normal lymphatic drainage.

Following astute investigation and differential diagnosis, benign primary lymphedema (not associated with cancer) occurring in an infant at birth or within the first year of life is classified as Type 1 Nonne-Milroy Syndrome ( Milroy's Disease). This ''congenital hereditary'' (present at birth, sometimes inherited) form of lymphedema is described as usually involving the lower extremities but sometimes the arms, hands and face and may also be associated with malformations of the intestinal lymphatics (hyperplasia or other dysplasia). The additional intestinal involvement may result in poor absorption of proteins into the blood stream. This is due to congestion created by large fatty molecules that also rely upon lymphatic vessels for absorption. Symptoms may include bloating of the abdomen (ascites), low blood albumin levels (hypo-proteinemia), high protein levels in the stool (protein losing enteropathy) and in advanced cases, a malnourished appearance. Some Milroy's patients may require special dietary guidelines involving less complex fatty acids, which are often times successful in alleviating the congested intestinal lymphatic system.

Additional classifications of primary lymphedema occurring in children include Type 2 Meige Syndrome. This non-congenital familial (not present at birth, sometimes inherited) form is associated with the changes of puberty and mainly occurs in females. As in Milroy's disease this form is associated with lower extremity lymphedema, is chronic and progressive if left untreated, but does not involve intestinal lymphatic malformations. Both Type 1 and Type 2 primary lymphedema can further be classified as lymphedema praecox, which is an umbrella label used to describe any primary lymphedema occurring before the age of 35. Of the two types, type 1 (Milroy's Disease) accounts for 6-7% of all lymphedema praecox cases. (1)

Differentiation

Other diseases associated with pediatric lymphedema, which are beyond the scope of this article include Klipple Trenaunay Weber Syndrome (KTWS, otherwise termed Angio-Osteohypertrophy Syndrome), Noonan's Syndrome, Turner's Syndrome, Amniotic Band Syndrome (3 chromosomal disorders) and others. Of the aforementioned syndromes, KTWS is not uncommonly encountered in a busy lymphedema clinic and is a serious medical disorder involving overgrowth of veins, arteries, bones and lymphatic tissues. Practicing lymphedema therapists and diagnosing physicians must be able to identify this condition and make treatment adjustments to accommodate the complications of this disease. It is recommended that those pediatric patients with KTWS and associated lymphedema seek expert physician supervision, preferably from a vascular surgeon with additional training in lymphology.

Diagnosis

As previously mentioned, pediatric lymphedema may be ''pure'' (uncomplicated) or complicated by other associated disorders of the vascular system or may involve physical obstruction, as in the case of malignancy. For this reason it is imperative to seek expert physician assessment in all cases. The correct diagnosis is nearly always gained clinically however, and relies in large part upon skilled observation, palpation and historical analysis. One safe and minimally invasive imaging procedure currently used to diagnose primary lymphedema is called Lymphangioscintigraphy (LAS). This procedure involves subcutaneous (within the dermis) injections of radioisotope tracers, which are photographed at set intervals to show the amount and speed of uptake and transport within the individuals' lymphatic system. However, when primary lymphedema is accurately diagnosed clinically, LAS may be omitted, as it will not change the course of treatment. Clearly, LAS is of great academic value and more importantly, may contribute to supporting the accuracy of the clinical diagnosis. Many times, as in the case of pediatric lymphedema, a clear image of the insufficient lymphatic drainage may put to rest parental concerns that lymphedema is not the only disease process at work.

Other testing procedures such venography and lymphography, which involve injections of dye are both painful and potentially damaging to vessel structures and have also been associated with deadly allergic reactions (anaphylaxis). In more complicated cases involving combination forms of lymphedema, Magnetic Resonance Imaging (MRI), Computer Tomography (CT scan) and Venous Doppler studies may be required to assist in designing a successful treatment plan. In uncomplicated cases, they are not necessary and only incur additional expense.

Treatment

At present there is no cure for lymphedema. It is unfortunate that surgical interventions are still sometimes undertaken as a form as treatment for all types of lymphedema. Although many brilliant and well-intentioned surgeons have attempted a myriad of ingenious techniques, it remains a fact that no reliable benefits have come from these procedures. More often surgery results in significant additional cosmetic disfigurement or lymphatic impairment. The most common type of surgery can be categorized as a ''debulking procedure.'' It is not logical to believe that the removal of substantial amounts of subcutaneous tissue, containing functional lymphatic vessels, will result in an improvement of the overall condition. Surgery is therefore not indicated for extremity lymphedema.

Another common treatment for lymphedema is the pneumatic compression pump. Although pumps provide some relief and may temporarily halt the advancement of swelling, the benefits are nearly always temporary and may result in abnormally large accumulations of lymph at the root of the limbs and within the trunk. Significant numbers of patients with lower extremity lymphedema who have been treated by pumps report genital lymphedema following daily use (2). This consequence is nearly always avoided by comprehensive treatment with Complete Decongestive Therapy (CDT).

Complete Decongestive Therapy (CDT)

When the condition is present during infancy parents can benefit their child greatly by implementing a course of conservative treatment as early as possible. By initiating a sensible treatment strategy early on, it is hoped that the chronic and progressive consequences of the disease can be significantly lessened. The treatment method universally accepted as the gold standard of care for lymphedema is called Complete Decongestive Therapy (3). This program of treatment relies upon four interdependent components and is successful in halting the progression of the swelling, the chronic inflammatory changes within the skin (lymphostatic fibrosis) and promotes healthier immune response in the affected areas (4).

Additionally, CDT liberates the patient from encumbrances such as pneumatic compression pumps or limb elevation, and requires healthful activity levels and proactive patient involvement. The four components of CDT are: Manual Lymph Drainage (MLD), compression bandaging, remedial exercise and infection prevention (meticulous skin and nail care). Self-care training involving any of these components with the goal of optimizing the clinical treatment results in homecare should be seen as an important additional component.

CDT Guidelines for Pediatric Patients It has been the authors' experience that typical approaches to treatment must be significantly modified for the pediatric patient, especially in the case of infantile lymphedema. The following suggestions are the result of clinical experiences gathered through treatments involving dozens of children.

All parents of children with lymphedema must be educated about the condition so that a realistic picture of this chronic condition can be gained. No surgical cure or pharmaceutical medication is available. It is unfortunate that lymphedema is presently an incurable condition, however, with early competent guidance the secondary tissue changes associated with lymphedema can be greatly reduced. Overall limb size can be maintained at nearly normal girth and immune function can be enhanced with ongoing Manual Lymph Drainage treatments. These benefits cannot be underestimated, because the long-term impact is quite positive and rewarding. Normal limb function and socialization can be expected in most cases. Children with lymphedema can live very normal lives.

Be patient with the process

Overly aggressive care is never productive for the adult or child with lymphedema. Especially in pediatric cases where all tissues are delicate, great care must be taken to avoid creating injury or discomfort. One must remember that a comfortable and happy patient will be a compliant patient. This special child must not be mishandled. Parents can be ''consumed with worry'' and approach compression bandaging overzealously, with the mistaken impression that ''more pressure is better''. It is more likely however to produce discomfort, pain or skin infections which can actually cause a worsening in the condition. Pediatric patients cannot tell us what is bothering them early on, and without this feedback the caregiver must adopt a relaxed and careful approach to compression therapy.

Similarly, the Manual Lymph Drainage (MLD) treatments delivered by the parent may be counterproductive if they are heavy handed or rough. Lymphatic vessels are delicate, threadlike structures, which may spasm or become otherwise injured by inappropriate treatment. In the clinic, parents must invest time into learning the appropriate skills. This investment cannot be underestimated in its importance and also allows for question and answer sessions between parent and therapist. The better educated the parent the more likely they will be to provide high quality care for their child.

Depending upon the age of the child, most will initially need to adjust to this ''strange new routine'' as well as to the intervening therapist. Time must be budgeted for this necessary process to take place and may require ''play sessions'' at first to create a feeling of comfort and safety. Suggestions include setting up a television and video player in the treatment room as a distraction; bring favorite toys, music and foods. Place a soft clean quilt on the floor and attempt treatment and bandaging from this vantage point. Allow the parent to hold the child on his/ her lap while the therapist works. All the while verbal education can take place between therapist and patient, which is usually of great value. At first this format may seem unproductive and can be a source of further anxiety for the parent, however, should this step be omitted, the young child will not comply with any of the components of the program and will ultimately create an even less productive outcome. This approach may also allow for a more ''semi-intensive'' approach, in that the total treatment duration is reduced to 2 weeks versus 4+ weeks as in the case of an adult. Treatments can therefore be budgeted for future use involving frequent follow up visits where parent, patient and therapist can review home care techniques and remain current concerning the overall condition of the child.

Start with MLD and self-care suggestions

For the very young child of less than one year of age, therapists may be quite productive in administering MLD. This ''massage like'' treatment involving gentle, soothing skin manipulation is usually well received by the infant. Parents can observe and repeat the agreed upon treatment sequences at home and may find that the best time to administer treatment is during nap times or at night while the child is sound asleep. Older children of age 18 months to 3 years who are considerably more active and less agreeable to this routine may also benefit from similar timing. The quality of touch required for proper MLD treatment is so gentle that children will become positively conditioned, and in time will view it as another form of loving touch from the parent and therapist. They will also be able to develop skills for their self- care and can be engaged in practice as they mature.

The goals of MLD are to create more efficient drainage within the affected area and systemically offset the chronic skin changes associated with lymphedema. In children the early intervention of MLD is extremely valuable in slowing or reversing these effects especially on the dorsum of the hand and fingers and similarly on the dorsum of the foot and toes. In some cases the genital area is also chronically involved, MLD application is essential and may again, offset chronic skin changes.

Compression Therapy Considerations

As previously mentioned, pediatric tissues are far more delicate than those found in an adult. Compression therapy can be counterproductive if it is not administered with great care and skill. This becomes an additional burden to parents and must only be undertaken by responsible and cautious caregivers.

It has been the authors experience that some patients are simply too young to intervene with compression therapy. However, the skilled therapist may provide a modified bandage in the clinic to gain a clearer picture of the potential for improvement. This bandage may not be practical for parental application until a later date. A very young infant (1-4 months old) will benefit from the stimulation of MLD alone and, as the child begins to stand, gravity becomes an exacerbating factor, necessitating external support in the form of compression bandaging and/ or medically correct compression garments. The only situation where intensive compression bandaging would be provided before this time is in the case of massive swelling (elephantiasis), a situation rarely encountered in infants.

Once the child begins to stand, lymphedema of the legs and feet may begin to worsen. This is the point in time where some compression strategies should be explored and employed. Therapist and parent must consider the benefits and tradeoffs carefully however, as bulky, multi-layered bandaging may impact the child's ability to safely ''toddle''. Bending the knees to crawl is made more difficult, and in the case of arm lymphedema, tactile skills and simple grasping tasks may be largely compromised. For these reasons and including the child's tolerance level, an intensive phase of 2 weeks (10+ treatments) is usually adequate to deliver quality care, and homecare education to astute parents. Within this time frame the therapists goals should include: Achieving a fair amount of reduction (without force), learning the unique compression gradient for optimal long-term improvement, effectively educating one or more caregivers in basic tailored MLD techniques, applying compression bandages safely, and measuring for any necessary compression garments.

Special Compression Guidelines

Most bandaging materials are sized for the adult frame and are too large for most young children and especially the infant patient. Select 4cm compressions bandaging materials such as DemaBand® in these cases and graduate to 6cm Comprilan/Rosidal®, or at the maximum, 8cm materials for most children. Another special product that is kind to pediatric skin is Velfoam®. This fleece-lined foam padding material is quite kind to delicate tissues and should be incorporated or substituted for other forms of padding. Artiflex®, and Cellona® synthetic cotton padding products can also be used in combination with foam but should not be exclusively applied otherwise shifting will occur. Toes are usually too tiny to affectively wrap. A tourniquet effect is more likely on small circumferences and great caution should be used if an attempt is made. It is the authors' opinion that gentles MLD and manual manipulation can affectively treat toes. Fingers may be wrapped with traditional materials such as Transelast® or Elastomull® of an appropriate width. Take care to double the bandage into two-ply as it will concentrate the bandage on a smaller skin area

.Compression garments are usually fitted to age appropriate patients (12+ months). The benefit of these elastic sleeves is that they provide medically correct gradient pressure. By wearing a sleeve and glove or leg stocking daily, pediatric patients will experience liberation from cumbersome bandages. Normal developmental milestones can be reached without delay such as coordinated walking. Furthermore, since bandaging is practiced at night, parents can rest assured that less than expert-bandaging technique can be corrected by daytime gradient compression.

Activity and Lifestyle

Due to the chronic and lifelong nature of lymphedema, parents are encouraged to permit their child to engage in normal activities such as sports, arts and crafts, and outdoor play. With lymphedema comes an increased risk of acute infection (cellulites) especially when the skin is injured. However, to disallow normal play may have significant and more troubling side effects that may be mental or emotional in nature. Furthermore, many lymphedema patients have no history of infection following numerous traumas and are therefore capable of normal activity. If infections are an occurrence, some activities should be modified accordingly but with an awareness of these larger concerns. Lymphedema in the majority of cases is not a disabling condition, however children who have been raised to feel as though they have a disability are truly at a disadvantage and may not experience the joy and freedom of childhood that is their birthright.

See Also:

Children with Lymphedema - Yahoo Support Group

Children's and Pediatric Lymphedema

National Lymphedema Network - Parents' Lymphedema Action Network