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Lymphland International Lymphedema Online
| some info on lymphedema types problems and more http://www.fpnotebook.com/Surgery/CV/Lymphdm.htm http://www.lymphedema-therapy.com/FAQ.htm Frequently Asked Questions "FAQ" -------------------------------------------------------------------------------- The following are frequently asked questions about managing lymphedema and lymphatic system disorders. They are by no means complete answers to what are always very complex questions but are meant as a guide. Each individual's situation is unique and each person should consult with their treatment team for their specific recommendations for their particular case. Question #1: "Why do I have to exercise?" Answer: Appropriate exercise stimulates the flow of lymph. Muscle contraction and changes in pressure in the chest from deep breathing cause changes in pressure on the lymphatic vessels. When the muscles contract against the compression of the compression bandages or compression garments worn on the affected limb this creates changes in tissue pressures that help the lymph to flow. Question #2: "Why do I have to wear my compression garment/bandages when I exercise?" Answer: When an individual has lymphedema, the pressure of the edema stretches out the skin so that it no longer provides a firm surface for the muscles to contract against. Exercise causes increased blood flow which caused an increase in lymph load in an already compromised limb. The compression of the garment/bandage provides a "new firm skin" for the muscles to contract against so that the pressure will be exerted on the lymph vessels and the fluid will move. Without the garment/bandage, the skin will just stretch and the force of the muscle contraction will not be translated to the lymph vessels. The involved limb could swell more if you exercise without compression. Question #3: "Why do I need to change my compression garment twice a day?" Answer: Compression garments are made of elastic materials that stretch out after wearing for about 12 hours. The areas where a limb bends (knee, elbow) stretch out more than the rest of the garment and then those areas do not receive the correct amount of compression which can allow pooling of edema fluid that can cause constriction at those areas. Some individuals can wear compression garments day and night and do not need to bandage their involved limb at night. These individuals should change their garments in the morning and again in the evening. Others may need to apply compression bandages for nighttime wear or use an alternative device such as a Reid sleeve, Tribute, or Jovi. Consult with your treatment team to discuss which option is right for you. Question #4: "Why do I have to wash my compression garment every time I change it?" Answer: Compression garments are made of elastic materials that stretch out after wearing. Washing them daily helps them to retain their elasticity as well as removes perspiration, bacteria and dead skin that accumulate inside the garment from normal wear. Question #5" "Why do I have to use moisturizer on my affected limb?" Answer: Moisturizing the skin helps to retain the elasticity of the skin which helps to avoid cracks/breaks in the skin. This is important because any break in the skin allows bacteria to enter the limb which is at risk for infection because of the lymphedema. Question#6: "Why do I have to wear compression on my affected limb 24 hours a day?" Answer: Our tissues are supplied with oxygen and nutrients by the blood. This blood is pumped around the body by the heart. With every beat of the heart, blood is filtering into our tissues. 90% of the blood volume in the tissues is picked up by the veins and brought back to the central circulation. 10% of the fluid volume in the tissues can only be brought back to the central circulation by the lymphatics. So, even when you are sleeping, even if your arm is elevated, blood is getting to your tissues (thank goodness!). Remember that in an impaired lymphatic system, the muscles need something to contract against to assist the flow of lymph fluid. Otherwise, the fluid will just pool under the skin and the limb will swell overnight. Then you may not be able to fit properly into your compression garment the next morning. That 10% of fluid volume, the lymph fluid, amounts to 2 liters a day in the whole body. Remember that a compression garment is not engineered to "reduce" a limb. It is engineered to "hold" a limb that has already been reduced. However, you should always discuss your individual case with your treatment team, as there are no absolutes and each person is different. 24 hour compression may not be right for you. Question #7: "How long can I keep my garment off?" Answer: Generally, in the first few months of CLT treatment it is not recommended that you remove your garments for more than 30-60 minutes at a time. Again, the skin of a lymphedematous limb is often stretched and will allow edema fluid to rapidly re-accumulate if there is no compression on the skin. The goal after treatment is for the skin and subcutaneous tissues to remodel to the new "smaller" size. This will not happen if the skin is allowed to stretch significantly. Once the limb has remodeled (6-12 months after CLT treatment) you may be able to remove the garment for longer periods without the limb swelling. Question #8: "How long after treatment will I have to wear the garment?" Answer: Generally, for as long as the lymphatic impairment lasts. The short answer is until someone finds a way to reverse that impairment. Right now that means forever as there is no cure for lymphedema. In the case of impairment secondary to the surgical removal of lymph nodes/vessels, this is usually not reversible. In the case of lymphatic impairment due to primary lymphedema, this is not reversible. Microsurgical techniques to re-connect lymphatics with other lymphatics or veins have not been very successful. Scientists are working on techniques to encourage re-growth of lymphatic vessels but these are in the experimental stages and on animal models. But, this is encouraging. Finally, there are scientists interested in the lymphatics! This is progress! Question #9: "Can I go swimming and if so, do I have to wear the garment in the water?" Answer: Swimming is one of the best exercises for lymphedema. If the affected limb is submerged in the water, then you do not have to wear your garment because the hydrostatic pressure of the water is providing the compression on your limb. Some people like to wear an old garment in the water because they like the extra compression that it provides, and they don't worry about getting in and out of the water and putting on and taking off the garment repeatedly. Always rinse the garment well after swimming, whether in chlorinated, fresh or salt water. Take care walking at poolside or on the shore to avoid cutting your feet. Wear water shoes or sneakers on the beach. Wear rubber soled shoes/sandals at poolside and in shower/locker room areas to avoid catching fungal infections. And always wear sunscreen outdoors to avoid sun damage to the skin. Question #10: "Why can't I put my garment in the dryer?" Answer: You can but the heat will ruin the elasticity of the garment and perhaps shrink it. Some manufacturers say that you can put them in the dryer, but that will wear them out faster and they are costly to replace. Garments are best air dried - out of direct sunlight. Question #11: "Can I remove my garment to have relations with my partner?" Yes, of course, and if you fall asleep without it, that's OK too. There are always exceptions to the rule. While you want to do the best for your condition, you need to work your lymphedema home program into your lifestyle, keeping in mind the basic principles of the lymphatic system and lymphedema management. Consistent compression is important but there are times when you need to be without compression. Just make sure that you are monitoring your limb and that any increase in swelling is addressed quickly to avoid problems. Question #12: "When I receive lymphatic drainage treatment, where is all that fluid going?" Answer: The fluid is directed back into the central circulation and whatever volume of fluid is in excess of the "normal" volume of your limb is excreted from your kidneys in your normal urine. Question #13: "What are the signs of infection in my affected limb and how do I know whether I have an infection?" Answer: Infection in a lymphedematous limb/area can look different in each individual and with each infection. Common signs of infection are unusual redness, warmth, blotchy appearance to the skin of the affected limb/area. This is sometimes accompanied by a sensation of itching, burning, or pain in the area. Some people develop a fever or feel like they "have the flu" in the affected limb/area. Regional lymph nodes can be painful and swollen. Some people are nauseous. The problem with these symptoms is that they also occur with other conditions. You can have a red rash from an allergic reaction or insect bite. You can have nausea and fever from the flu or a viral or bacterial infection that does not involve your affected limb. Sometimes, the inflammatory reaction to a rash or insect bite can precipitate an infection. That is why you should always carefully inspect your involved/at risk areas carefully every day for any signs of breaks in the skin, redness, increased swelling, etc. As soon as you notice something different, call your physician/therapist to discuss it with them. Many physicians provide their patients with oral antibiotics and instructions that they start to take them if they feel that they have an infection and then to call the office IMMEDIATELY to come for an emergency visit to have the area evaluated. You should never attempt to "treat" an infection yourself. The reason to have antibiotics on hand is to be able to start them at the first sign of infection, just until you can get medical attention. Abuse of antibiotics is dangerous, but under- treating an infection in a lymphedematous limb or limb at risk for lymphedema is also dangerous. Question #14: "Why should I avoid prolonged sun exposure?" Fist of all, the sun is hot and direct exposure causes the skin temperature to rise. The application of heat to the involved extremity causes the blood vessels to open up (dilate) and more blood to flow into the area. This causes an increase in fluid load in the affected extremity and can cause an increase in swelling. The sun's rays damage the skin. A "tan" is really the skin's way of responding to damage from the sun by depositing melanin, a skin pigment, in the upper layers of the skin. Even if you don't normally "burn", you should wear sunscreen on your affected limb as well as the quadrant of your body that connects to that limb. For example, if you have lymphedema in your right arm, you should also have sunscreen on your neck, shoulder and chest and back on the right side. Actually, you should always use sunscreen on your entire body to avoid skin cancer, but at least have good coverage on your affected areas. Question #15: "Why are people with lymphedema of the arm/hand told to avoid manicures?" The skin is a very porous organ. It absorbs chemicals. Acetone and other nail polish removers are chemicals. The solvents that are used to remove artificial nails are strong chemicals. Cutting cuticles too close can allow bacteria that are always on the skin to enter and possibly trigger an infection. Nail salons are public places and instruments are not sterile. People who wear artificial nails are more prone to develop fungal infections -------------------------------------------------------------------------------- Lymphedema Therapy 77 Froehlich Farm Blvd., Woodbury, New York 11797 1-800-MD-LYMPH or (516) 364-2200 Marvin Boris, MD Stanley Weindorf, MD Bonnie B. Lasinski, MA, PT, CI, CLT-LANA http://www.lymphedema-therapy.com/03paper.htm Secondary Lymphedema: Non-Cancer Related -------------------------------------------------------------------------------- SECONDARY LYMPHEDEMA: NON-CANCER RELATED BONNIE B. LASINSKI, MA, PT, CI, CLT-LANA -------------------------------------------------------------------------------- "Doctor, why is my leg still swollen? What do I have and can it be treated?" These are questions often go unanswered, despite numerous diagnostic tests and evaluations, and in spite of endless hours of limb elevation. Why is chronic limb edema (non-cancer related - NCR) such a mystery? Perhaps it is because the lymphatic system remains the most neglected organ system in the body and is rarely thought about as a logical cause of limb edema unrelated to cancer treatment. The key to early diagnosis and intervention for secondary lymphedema, non-cancer related, is increasing awareness and education about lymphatic system pathophysiology and anatomy so that every physician, regardless of specialty, recognizes the possibility of lymph system dysfunction as the cause of chronic limb edema. This presentation will review actual clinical cases that illustrate some of the "uncommon" causes of secondary lymphedema, non-cancer related. The following categories will be represented: Orthopedic injuries/surgeries - i.e. fractures, meniscal/ligamentous injuries/repairs, joint replacements, and tendon releases. Neurological conditions - muscle paresis - CVA, post polio, spastic paralysis. Vascular injuries/surgeries - vessel injury from trauma or unintended trauma from catheterization, removal of a vein/veins for CABG or leg bypass. Integumentary injury - trauma to skin, degloving injuries, burns, damage to skin from long term steroid use, i.e. for COPD or RA. Infection Scar tissue formation - multiple abdominal surgeries, i.e. Gall bladder, TAH, umbilical/abdominal hernias. Lipedema Most often it is the combination of factors that causes the lymphedema to develop. A precise chronological history of symptoms, surgeries, traumas, medications used, therapies received, and co-morbidities can clarify the "unexplainable" and diagnose the problem, leading to a plan to manage the lymphedema, thus improving the patient's quality of life. The lymphatic system is a regional system. Individual lymph drainage territories of the skin are independent of one another. Collateral connections between these areas exist but are small and are not needed when lymph transport capacity exceeds lymph load in the unimpaired lymphatic system. When there is disruption to lymph vessels/nodes from trauma, surgery, infection, scar tissue, etc. or when the elasticity of the skin and subcutaneous tissues is poor or when muscle tone is poor, then lymph load may exceed lymph transport capacity and lymphedema results. Usually, edema begins distal to the site of the damage/obstruction. A basic understanding of the normal anatomy of the lymphatic system is critical for anyone evaluating an individual with edema of unknown origin, where testing has already ruled out most of the common causes of edema, namely cardiac, renal, hepatic, thyroid, venous, or drug induced. The major lymph node basins for the extremities are the axillary (armpit) for the upper extremities and the inguinal (groin) for the lower extremities. Lymph from both lower extremities and the genitalia drains into the pelvic and abdominal lymph node basins. From here, the lymph eventually moving into the thoracic duct which is the major lymph vessel that transports lymph fluid form the lower half of the body into the left venous angle between the left jugular and left subclavian veins, and into the right side of the heart. Lymph from the right upper extremity drains into the right axilla and then into the right lymphatic duct which empties into the right venous angle between the right jugular and right subclavian veins, into the right side of the heart. Anatomically, one can see that disruption from infection, scarring, inflammatory processes, accidental injury during a surgical procedure in the pelvic/abdominal areas can result in lower extremity lymphedema as well as abdominal and genital edemas. In the same way, any injury along the path from the upper extremity to the axilla and then into the chest can result in lymphedema in the arm/hand. Trauma, infection, or the formation of a blood clot in the area around the venous angles can cause lymphedema. An individual who undergoes multiple abdominal surgeries with scarring near/around the abdominal lymph nodes and the afferent vessels carrying lymph from the lower extremities, may develop lymphedema in the legs. An individual who sustains a severe fracture/dislocation of the ankle disrupting pathways from the foot/ankle may develop lymphedema of the foot and ankle which may progress to the calf due to an overloading of the functioning vessels in the lower leg. A woman having cosmetic surgery to remove excess fat pads in the anterior axillary line may incur damage to the axillary nodes if the surgery extends too far into the axilla. Does this sound far-fetched? I consulted with a nurse who had this surgery (after a pregnancy left her with large bulging fat pads at the anterior axillary line) and developed lymphedema in her left hand post operatively. When she obtained the pathology report, the specimen from the right side contained fatty tissue only, but the specimen from the left side contained fatty tissue and three axillary lymph nodes. In most cases of secondary lymphedema non-cancer related, the patient endures multiple physician visits and diagnostic tests that rule out the heart, thyroid, kidney, liver, and cardiovascular system as causes of the edema. CAT scans, MRI's and bone scans rule out occult cancer as the cause of the swelling. While the patient is heartened that he/she does not have cancer or a life-threatening condition, they are frustrated by the lack of diagnosis of their problem. They know what they don't have, but they still don't know why their limbs are swollen. An obvious diagnosis may be venous dysfunction. Oddly enough, chronic venous insufficiency may be part of the problem or the root cause of the secondary lymphedema, which is still often not diagnosed and properly treated. Pure venous edema reduces on elevation. Lymphedema may reduce with elevation in early Stage 1, but when fibrosis begins to develop the limb no longer completely reduces with elevation and skin and subcutaneous tissue changes occur, leading to decrease oxygenation, an increased risk for infection and a decrease in limb mobility. The key to early diagnosis and intervention for secondary lymphedema non-cancer related is an Increased awareness/education regarding lymphatic anatomy/physiology and pathophysiology for every physician and health-care professional, regardless of specialty. The cases I will review have seen internists, dermatologists, podiatrists, cardiologists, neurologists, orthopedists, and physiatrists, physical and occupational therapists. Many missed the diagnosis all together. Unfortunately, progressive skin changes and bacterial and fungal infections have been misdiagnosed as dermatitis, eczema, gout, etc. resulting in improper drug prescription or other treatments that not only didn't improve the situation but allowed the lymphedema to progress unchecked, to the detriment of the patient. What is the solution to this problem? First, a good basic overview of the lymphatic system (presented by a lymphologist who can explain common clinical presentations to the students) needs to be included in medical/allied health curricula. The NLN recently offered a 4-hour instructional course during their conference held in August 2002 in Chicago: "Lymphedema management for the practicing physician". This session was attended by --- physicians and ---. It provided a wonderful overview of the lymphatic system anatomy, physiology, and pathophysiology, and was presented by some of the leading lymphologists in this country. The NLN is trying to set up a Speakers Bureau of experts who would agree to be available to present at conferences, Grand Rounds, Awareness Events, etc. After discussing some basic lymphatic anatomy and pathophysiology with the physician/husband of a patient with breast cancer related lymphedema, he excitedly admitted that he and his colleagues have seen many patients with unexplained extremity edema. He was amazed to realize the implication of the cumulative effects of surgeries, obesity, trauma, chronic inflammation requiring long-term steroid treatment, vein harvest for bypass surgeries, (the list goes on and on) on the lymphatic system. Of course he is sensitized, having watched his wife deal with progressive upper extremity lymphedema, which progressed despite months of ineffective "treatment". Once she received appropriate treatment and her lymphedema began to reduce, he realized the importance of specialized training/knowledge to treat lymphatic system disorders. He certainly will never stop his clinical investigation short of the lymphatics when diagnosing edema of unknown origin. A Review of 24 randomly selected cases revealed the following causes of lymphedema (several cases had more than one cause): CVA or neuromuscular spasticity - 2 Knee injury/sprain - 1, Lipedema - 2, Total hip replacement - 1 Fracture - 5 Total knee replacement - 4 Leg bypass - 1 Coronary bypass - 2 Infection - 9 Abdominal surgery - 5 Chronic steroid medication - 3 Skin ulceration - 3 Arthroscopic surgery of the knee - 2 Vein ligation - 1. The following are representative examples of secondary lymphedema non-cancer related. Case 1 - PP - 49-year-old male, sustained a compound proximal and distal tib/fib fracture, trimalleoar fracture/ dislocation of the ankle. He had ORIF and 4 months of rehab. He did not progress in rehab due to severe pain, swelling, heat and redness in the affected lower leg. He had several episodes of redness, heat and fluid leakage from the sites where the external fixation device had been removed. He had seen 3 orthopedists, a physiatrist who prescribed an ankle foot orthosis to support the distal ankle, and a dermatologist who diagnosed dermatitis instead of cellulitis and prescribed a topical steroid cream. He could not progress in his rehab due to the chronic redness, pain, swelling, and limited mobility in his ankle and foot. He could only walk short distances, had great difficulty negotiating stairs, and performing any ADL's involving weight bearing. He was on disability from his job as a police officer. He was self- referred to a lymphologist after a friend and informed breast cancer survivor recognized that he might have lymphedema. His lymphedema was secondary to the trauma of the fracture/dislocation, surgery, and chronic, untreated cellulitis in his leg. The swelling was labeled as "post-operative" and the cellulitis was misdiagnosed as a skin irritation. He lost 4 months of his life and his return to work and his life in general was delayed that much longer. Case 2 - MA - 75 year old female who sustained a fracture of the left second and third metatarsals when a brick retaining wall in her garden fell on her as she was weeding. The fractures were casted in a short leg cast and in 4 weeks she developed an infection, severe pain in her leg and foot, and an ulceration on her heel because her leg swelled in the cast. Dopplers and x-rays were negative for any new pathology. Fortunately, her orthopedist had a patient who had received CDT treatment and had done well. She was referred to that lymphologist after 8 weeks of physical therapy failed to heal the ulcer or reduce the pain, swelling and limited mobility in her left foot/ankle/lower leg. Her lymphedema was secondary to the trauma of the incident and the infection. After one month of CDT treatment, her ulcer was completely healed, range of motion of the foot and ankle were improved, she could walk without her cane, fit into her shoes, and pain was 2/10 reduced from 10/10. Most importantly, she was able to get back to her gardening. Case 3 - PM - 56 year old female with a history of severe rheumatoid arthritis for 20 years, with a nine-month history of progressive swelling in both legs following 18 months of oral steroid medication for her arthritis. Because she had been on many toxic medications to treat the arthritis, she was referred to a hematologist for a bone marrow and bone biopsy which were negative. She was seen by a vascular surgeon who did Dopplers that were negative for DVT. Her internist ordered a CAT scan of the abdomen and pelvis that was negative. She developed progressive weakness and decreased mobility in her lower extremities. The skin of both lower extremities was thin, taut and shiny, and the patient reported that they were chronically red and warm. She had been hospitalized for an infection in her legs in June of 01. There were several small ulcerations on the right lower leg which were had been leaking lymph for approximately two months prior to her referral to the lymphologist. There was a 4-cm diameter 1-cm deep ulceration on the plantar surface of the MP joint of the left great toe. Her podiatrist had "shaved" a callus from this area, and she reported that she had been treated for a "staph" infection by the podiatrist, but that he said that it was resolved. At the time of her referral, she was dependent in all ADL's, could not negotiate stairs (she turned her living room into a hospital room), spent most of the time in a wheelchair, and could only ambulate 10 feet with a rolling walker. She developed flexion contractures in her hips and knees from the prolonged sitting and immobility. Her husband had to dress her lower body. Her pain was 10/10 and she was severely depressed. Wound cultures revealed MSRA in the left great toe ulceration, and in the small ulcerations on her right lower leg. No one could figure out what was wrong with this woman. She had lymphedema in her legs secondary to prolonged steroid treatment that worsened after the chronic antibiotic-resistant infection remained untreated for several months. The elasticity of her skin was severely weakened and the skin itself was paper thin and opened easily. After nine months, her rheumatologist referred her to a lymphologist after researching on the Internet. Once the lymphedema was addressed (the patient underwent a course of CDT) and the infection appropriately treated with a drug that MRSA was sensitive to, the wounds healed, the edema and pain resolved, and the patient began to increase strength and mobility. After 4 weeks of CDT, the patient was able to ambulate 50-100 feet with her rolling walker. At the one-month follow-up appointment, the patient ambulated with a straight cane, was independent in most of her ADL's, and was able to drive herself to the appointment. She was referred to PT for strengthening and mobility exercises. Her rheumatologist was astounded and vowed to discuss this case with all her colleagues and spread the word about remembering to include the lymphatic system when evaluating edema of unknown origin. Case 4 - RL - a 60 year old male, retired airforce test pilot, with a six-year history of progressive lower extremity edema, onset 6 months following coronary artery bypass using donor veins from both lower extremities. As the edema worsened, it extended into the abdomen. Unfortunately for this patient, he was obese, had a large abdomen, and did have a history of heart disease. He was told that the edema in his legs was just water retention because he was fat and had some heart disease. The patient had been sleeping in a recliner chair for 6 years. He had been diagnosed with sleep apnea. The patient referred himself after searching on the Internet for months. His physician refused to give him a referral because he didn't believe he had lymphedema because he never had lymph nodes removed! He traveled from New Hampshire to New York to consult with a lymphologist and receive CDT treatment. His only treatment prior to that had been diuretics. He was dependent in lower body dressing, only ambulated 10 feet before stopping to rest and lean on furniture due to pain and SOB. His pain was 10/10. He was severely depressed. He scored his functional impairment a 10/10. The lymphologist referred him to his cardiologist to rule out abdominal ascites or CHF as the cause of his SOB. His cardiologist did an abdominal US that found no fluid in the abdominal cavity. However, he did have abdominal lymphedema! This patient received one month of CDT treatment achieving a 53.3-cm reduction in his left lower extremity and a 44.5-cm reduction in his right lower extremity. His weight reduced from 298 to 273 pounds. At one-month follow-up, he reduced another 21.8 cm on the left leg and 13.3 cm on the right. He slept supine in a bed with his wife for the first time in 6 years and he was able to play with his grandchildren. He scored his post-treatment functional impairment a 3/10 because he needed assist to don his compression stockings. He did acknowledge that although he hated the stockings, they were a small price to pay for getting his life back. His lymphedema was secondary to the disruption of the venous system and scarring/probably damage to lymphatics from the vein harvest, the subsequent infections, and his obesity. Once again, an individual who was receiving regular medical care from an internist and cardiologist suffered needlessly because the lymphatic system was not considered when lower extremity edema developed. Case 5 - MR a 78-year-old recent widower with a one-month history of severe swelling in his left forearm/hand since IV infusions for dehydration caused by depression. He had seen vascular specialists who ruled out DVT as the cause of the edema. His ADL's were impaired 5/10 and he reported chronic pain and a feeling of bursting in his left hand 5/10. His grip strength was poor in the left hand and he was having difficulty dressing and doing his daily chores. His significant past medical history included intestinal resections in 1960 and 1963 for severe Crohn's disease for which he required chronic steroid treatment to be able to function. The skin of all extremities was thin and there were multiple scars/bruises from old skin tears/traumas. MR had lymphedema of his left upper extremity secondary to damage to the skin lymphatics from chronic steroid treatment. He responded well to lymphedema treatment, regaining his strength and mobility in his left hand/arm. He was able to discontinue his compression sleeve/glove after 6 months. Unfortunately, the lymphedema recurred in 9 months when he again required hospitalization for dehydration and IV therapy. Except that this time, MR did his own self MLD and compression bandaging and then wore his compression garments for about 3 months and was able to discontinue their use. Case 6 - LK is an independent 85 year old widow with a long history of osteoarthritis and a 3-year history of chronic swelling in her left lower extremity. The swelling limited her safe ambulation and caused impairment in her strength and range of motion of her left leg/foot. She required the assistance of a home health aide for her ADL's. She could only walk short distances with a quad cane. She had had a left total knee replacement in 1995, followed by the removal of a Baker's cyst from the left popliteal area in 1997. Two months after that operation, she developed a fungal infection around the left knee prosthesis, necessitating its removal in 12/97. She underwent a second total knee replacement on the left in 2/98. She was told that she had "post-op edema" which had unfortunately lasted for 3 years! She had consulted several vascular surgeons and another orthopedist, none of whom could diagnose the cause of her chronic edema, other than to say that she should expect it at her age, after the repeat surgeries she had had. Once the lymphedema (which was secondary to the traumas of the repeat surgeries and the infection) was treated, LK was able to "fire" her home health aide and she continues to live independently in her own home, needing only a straight cane for balance when walking. Case 7 - AS is a 73 year old female with an 18-year history of primary lateral sclerosis/familial spastic paresis. She was dependent in all areas of ADL and required a reclining wheelchair for optimal positioning. In 4/00 she had a Baclofen pump inserted to control her severe spasticity. She developed cellulitis in both legs shortly after that procedure. Relevant past medical history included a total abdominal hysterectomy in 1990 and the repair of an umbilical hernia after that developed after that procedure. As was advised that she was not a candidate for "traditional CDT" but she was relieved to have a diagnosis for her problem. Her lymphedema was most likely secondary to the severe spasticity in her lower extremities complicated by three abdominal surgeries and cellulitis in her legs. Case 8 - MS is a 66 year old female with a 26 year history of chronic edema in both lower extremities. MS was always "overweight" since her teen years. The swelling in her legs and feet progressed over the years and no longer reduced on elevation. In the last few years, she has been hospitalized 5 times for IV treatment of cellulitis and ulcerations in her legs. MS was treated with diuretics and told to lose weight. She tried both but the swelling and skin changes kept worsening. MS has lymphedema in her legs secondary to longstanding lipedema. To the trained lymphologist, these cases are self-explanatory. For each case there is a cause and effect. The challenge for every health-care professional is to become educated in the anatomy, physiology and pathophysiology of the lymphatic system so that no individual has to live with lymphedema undiagnosed and untreated. -------------------------------------------------------------------------------- Lymphedema Therapy 77 Froehlich Farm Blvd., Woodbury, New York 11797 1-800-MD-LYMPH or (516) 364-2200 Marvin Boris, MD Stanley Weindorf, MD Bonnie B. Lasinski, MA, PT, CI, CLT-LANA http://www.lymphedema-therapy.com/Lipedema.htm Lipedema -------------------------------------------------------------------------------- Overview and Etiology. The term lipedema was first used by Allen and Hines (1940) to describe a symmetrical "swelling" of both legs, extending from the hips to the ankles, caused by deposits of subcutaneous adipose (fatty) tissue. The underlying etiology of these fat deposits remains unknown. While lipedema is not a disorder of the lymphatic system per se, it is frequently confused with bilateral lower extremity lymphedema. It occurs almost exclusively in women and may have an associated family history (20 per cent of cases) and is usually accompanied by hormonal disorders as well (Strossenreuther, 1999). If present in a man, it is accompanied by massive hormonal disorder. Fat in the lower extremities extends to the malleoli (ankle bones), often with flaps of tissue hanging over the foot. The feet are not affected; occasionally, lipedema is found in the arms. Typically, there are also fatty bulges in the medial proximal thigh and the medial distal thigh, just above the knee. Clinically, the affected individuals complain of pitting edema as the day progresses, which is relieved by prolonged elevation of the leg(s) overnight (Rank and Wong, 1966; Rudkin and Miller, 1994; Casley-Smith, 1997). Stages of Lipedema. In Stage I, the skin is still soft and regular, but nodular changes can be felt upon palpation (see photo #1). There are no color changes in the skin and the subcutaneous tissues have a spongy feel, like a soft rubber doll. In Stage II, the subcutaneous tissue becomes more nodular and tough. Large fatty lobules begin to form on the medial distal and proximal thigh and medial and lateral ankles just above the malleoli (see photo # 2). Pitting edema is common, increasing as the day progresses. The individual may report hypersensitivity over the anterior tibial (shin) area. Skin color changes occur in the lower leg, indicative of secondary lymphedema, which often occurs in later stage lipedema. Pathophysiology of Lipedema (Strossenreuther, 1999). There are many histological and physiological changes that occur in lipedema. There is a decrease in the elasticity of the skin and underlying connective tissue. The basement membrane of blood vessels is thickened and there are disturbances in vasomotion. There is decreased vascular resistance, increased skin perfusion, and increased capillary filtration. There is increased venous/blood capillary pressure causing increased ultrafiltration. These vascular changes combined with the decreased efficiency of the calf muscle pump, result in both the dependent pitting edema seen in Stage I, as well as the the secondary lymphedema that often complicates lipedema in its later stages. Histological changes seen in lipedema include a thinning of the epidermal layer, thickening of the subcutaneous tissue layer, fibrosis of arterioles, tearing of elastic fibers, dilated venules and capillaries, and hypertrophy and hyperplasia of fat cells. Clinical studies show that there is enlargement of the pre-lymphatic channels (Stoberl et al., 1986) as well as defects in capillary perfusion (Weinert and Leeman, 1991). Some authors have reported no alteration in lymphatic transport (Brautigam et al., 1998) while others (Bilancini et al., 1995) have reported decreased lymph outflow in those individuals with lipedema. Foldi and Foldi (1993) reported an increase in fat cell growth during lymphostasis. Medical Management Diagnosis. The diagnosis of lipedema is difficult if the clinician is unfamiliar with this condition. Often, these people are told that they are "fat" and should just lose weight to resolve the problem. For reasons still unknown, the fatty tissue accompanying this condition cannot be significantly decreased by diet. It is not uncommon for a diagnosis of primary lymphedema to be made. This results in frustration for the person who then seeks out lymphedema therapy with poor results. There are several significant clinical differences between lipedema and bilateral primary lymphedema. The feet are not involved in lipedema; while they are edematous with a positive Stemmer's sign in lymphedema, Stemmer's sign is negative in lipedema (see fig. 12-17). The "swelling" in lipedema is symmetrical, while in primary lymphedema usually one limb is more involved than the other. The subcutaneous tissues feel rubbery in lipedema. In advanced Stage II lymphedema, there is significant subcutaneous fibrosis, which feels firmer than lipedema. While there have been reported incidences of cellulitis in Stage II lipedema (usually with a component of lymphedema as well), the frequency of cellulitis in Stage II lymphedema is much higher. The time of onset of the "swelling" in lipedema is usually around puberty and 90 per cent of these cases have accompanying diagnoses of hormonal disturbance (thyroid, pituitary, or ovarian). This is usually not the case with primary lymphedema. A lymphoscintigram may be helpful to differentiate between lymphedema and lipedema, however, there can be conflicting results as lymphedema often occurs to some degree in the later stages of lipedema, probably due to impairment of lymph flow caused by the pressure of fatty tissue. In fact, there are clinical cases of bilateral lower extremity lymphedema in the morbidly obese individual; the onset of the lymphedema occurs after body weight exceeds 350-400 pounds. It is plausible to suspect that the pressure of a large apron of abdominal fat can effectively block lymph flow through the inguinal area causing the lymphedema but there is a difference between these cases and lipedema because obesity does not cause lipedema. Lipedema is caused by a hormonal imbalance resulting in excessive deposition of adipose tissue, most often in the lower extremities (see Figs. 12- 21; 12-22) although it can occur in the upper extremities as well. Treatment and Prognosis. There is no effective medical treatment for lipedema and the prognosis is guarded; however, significant functional improvements are possible with good program compliance and therapy intervention. Medical management involves treating the hormonal disturbance as effectively as possible and providing nutritional guidance to avoid additional weight gain. Many of these individuals have endured years of ridicule because of their physical appearance and become recluses in their homes, further limiting their activity level. As lipedema progresses and the hypersensitivity increases, they feel less inclined to walk or exercise because of the pain. They inevitably gain more weight due to the inactivity and depression, often finding food their only comfort. The primary goal of therapy intervention in the person with lipedema is symptomatic relief and realistic improvement of trunk and lower extremity function. Application of the combined lymphedema treatments has shown some success in relieving the pain and hypersensitivity in the lower legs and improving general mobility. Usually, a lower level of compression is needed to support a lipedematous limb, compared to a lymphedematous limb of the same size and girth. This guideline applies to the compression garments as well. These individuals often require more padding under the compression bandages, particularly in the anterior tibial area. They do not tolerate the heavier, denser compression fabrics and usually require a lower grade compression garment than someone with uncomplicated lymphedema. The therapist must remember, however, that later stage lipedema is often accompanied by lymphedema as well, and the treatment and management must take that factor into consideration when recommending exercise and garments. The main goals of intervention are to decrease pain and hypersensitivity, to decrease the lymphedematous component of the disease, and to assist the individual in maintaining and/or reducing adipose tissue through exercise and nutritional guidance. The compression garments can help to decrease the adipose tissue with exercise and weight loss. The most difficult task is fitting the compression garments. They must be custom made due to the large size of the individual and are often uncomfortable at the waist, particularly when sitting. Making the radical change in daily activity level is most challenging for these individuals. Providing continued support and encouragement is important. Networking is helpful and is facilitated by offering a support group, even when held on an irregular, informal basis. An hour-long educational meeting, even if only offered three or four times per year can provide a neutral meeting place for people to begin networking. Nothing can compare to the encouragement and hope that an individual with lipedema/lymphedema can derive from seeing and talking with someone else living with the same problem and hearing how others cope on a day-to- day basis. Therapists can learn some of the best guidance on exercise and coping with garments in a group like this. -------------------------------------------------------------------------------- Lymphedema Therapy 77 Froehlich Farm Blvd., Woodbury, New York 11797 1-800-MD-LYMPH or (516) 364-2200 Marvin Boris, MD Stanley Weindorf, MD Bonnie B. Lasinski, MA, PT, CI, CLT-LANA http://www.lymphedema-therapy.com/lymphedema-exercise.html Lymphedema and Exercises -------------------------------------------------------------------------------- Exercise for Lymphedema Benefits Supported by Studies Bonnie B. Lasinski, MA, PT, CLT-LANA -------------------------------------------------------------------------------- Exercise and lymphedema - it is a controversial subject How is lymphedema and exercise viewed today? 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 lymphedema and exercises for both patients and professionals alike. Exercise and lymphedema - it is a controversial subject. Our Nearly 30 Years of Research on Exercise for Lymphedema Twenty-nine years ago in 1980, 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, never mind lymphedema and exercise; 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 on exercise for lymphedema, 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 lymphedema and exercise progression and then opened the floor for questions. In 2009, although the medical management of lymphedema has come a long way, thanks in great part by the advocacy of Saskia Thiadens and the NLN and many others, 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 for lymphedema contained in the 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 for lymphedema 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. Exercise for Lymphedema makes Medical Sense 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. Basic principles behind occurrence of 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. Lymphedema is a problem of excess water and protein Our lymphatic system, in addition to filtering out waste products, helps our bodies maintain fluid balance so that we are neither dehydrated nor edematous. Up to 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% (or more) 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% (or more) 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. Relation between lymphedema and exercise 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. So exercise for lymphedema may be beneficial, however 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. Lymphedema and Exercises are specific to each individual Benefits of exercise for lymphedema •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 for lymphedema is best done with compression Exercise for lymphedema 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 Certain types of exercise are considered higher risk Of course, certain types of exercise are considered higher risk than others for individuals with lymphedema. 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. Things to consider regarding lymphedema and exercise •Many men and women with lymphedema 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). Exercise for lymphedema is one component of the treatment for lymphedema. You’ll find more information here on other components of Comprehensive Lymphedema Treatment with our certified lymphedema therapists. Lymphedema and Exercise Case Studies Case Study of Upper Body Exercise for Lymphedema A 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. Regarding lymphedema and exercise, the authors conclude that strenuous upper body exercise may not cause lymphedema or worsen a pre-existing lymphedema. It is important to note in this lymphedema and exercise study 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. The at risk/limbs with lymphedema should be measured periodically to insure that there are not subtle volume changes that may not be visible to the individual. 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. Case Study of Weight Training Effects on Lymphedema Ahamed et al in 2006 examined the effects of supervised upper and lower body weight training on the incidence and symptoms of lymphedema in 45 breast cancer survivors who participated in a supervised, graduated program of exercise twice weekly for 6 months. None of the participants experienced a worsening of their lymphedema or a triggering of lymphedema in their at risk limbs. Schmitz et al in 2009 assessed the safety of a graduated exercise program on 295 survivors with breast cancer related lymphedema (BCRLE) and 154 at risk for lymphedema. Their results were similar, demonstrating that individuals who are at risk for lymphedema or who have lymphedema can participate in exercise, provided it is progressed slowly and their limbs are assessed for any signs of increased or developing swelling throughout the program and the program is modified accordingly for each person. The key is proper evaluation and assessment for signs of swelling, tightness, or skin and tissue changes, before, during and after exercise. A related study that we conducted can be found here involving Upper Extremity Lymphedema Secondary to Breast Cancer. The study involved patients with unilateral upper extremity lymphedema secondary to axillary node dissection (accompanying lumpectomy or mastectomy for carcinoma of the breast). It was done to evaluate the persistence of reduction in lymphedema following a single course of Complex Lymphedema Therapy. Please write us any questions or concerns you may have about treatment options at Lymphedema Therapy. Our Certified Lymphedema Specialists will be happy to answer your questions on how we may help you or someone you know who has lymphedema. We invite you to fill out and submit your questions to us here on our Contact Form. The physicians and certified lymphedema therapists at Lymphedema Therapy are experienced in these assessments. For more information, contact our center at 516-364-2200 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 77 Froehlich Farm Blvd., Woodbury, New York 11797 1-800-MD-LYMPH or (516) 364-2200 Marvin Boris, MD Stanley Weindorf, MD Bonnie B. Lasinski, MA, PT, CI, CLT-LANA |