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Lymphland International Lymphedema Online
| Emotional Effects Lymphedema can affect your self-image, interfere with your routine activities and what clothes you can wear, and remind you of the disease you thought you'd overcome. Your arm may feel heavy as lead, an appendage that is somehow "you" but "not you." Your arms and legs may also ache, feel tired or uncomfortable, or feel tight or painful. It may look swollen and unattractive. Strangers may ask you why your arm or hand is swollen, or why you're wearing a compression sleeve or bandages. Adding insult to injury is the continuous medical care and expense of treating this unpleasant condition. Most cases of lymphedema aren't disabling or terribly uncomfortable. But once you do have an episode, the condition tends to persist or recur, varying in degree. The lymphedema may go away on its own, or it may clear up only if the cause is treatable (and treated quickly). Episodes may last for days or weeks. If your swelling lasts for months, it's likely to be permanent, but remember that even the most severe cases can be substantially improved with ongoing treatment. Severe cases of lymphedema can cause thickening of the skin, stiffness and hardness of the arm and hand, and leakage of fluid from minor injuries. Fortunately, such severe cases are unusual. People have different emotional responses to developing lymphedema, and all of them are perfectly normal. You might be angry that you weren't adequately warned about the possibility of developing lymphedema. Even if you were warned, you might still feel angry because lymphedema is a chronic condition that you will need to manage in some way for the rest of your life. It's common to be frustrated with treatment, since it can require a large commitment of time, effort, and money. Other emotional responses include depression and feelings of helplessness. Whatever your feelings about lymphedema, it's important to talk about them with friends, family, and health professionals. It can help to know that you have choices about how to manage your lymphedema. An occupational or physical therapist can explain your treatment options and help you decide which is best for you. It takes a lot of patience, and trial and error. Not every treatment option works for every person. ---------------------------------------------------- Your feelings about lymphoedema Having lymphoedema may bring about a variety of feelings, which arise not only from the discomfort of the condition itself, but also from the cancer and its treatment, which caused the lymphoedema to develop. Embarassment The lymphoedema swelling may be a constant reminder to you that you have had treatment for cancer - something you perhaps had hoped to forget as much as possible. If the swelling is severe, you may feel embarrassed and self-conscious about it. Try not to shut yourself away. Almost certainly, the swelling is more noticeable to you than it is to others. If you are nervous about going out in public at first, ask someone you know to come with you. You will probably find that no one makes an issue of your lymphoedema. If you have very obvious swelling, some people will inevitably be curious, especially children. Many people find it helpful to rehearse what they will say in such situations. Your lymphoedema therapist or nurse may be able to help you plan and practise your responses. Or you may prefer to talk about it with other people who have lymphoedema. You could decide how much you wish to say about your condition, whether to refer to your cancer or treatment. Once you have a prepared response, you are less likely to be thrown by any remark or question directed to you. You may even find yourself actively helping others to overcome any awkwardness they may feel. As your lymphoedema becomes more under control, and as you get more used to it, you will almost certainly find that your feelings of embarrassment lessen. You will probably realise that true friends care for you because of the person you are, not for your appearance, and this will increase your self-confidence and make you feel more in control of your life. Anger You may be feeling very angry that you have to deal with the burden and inconvenience of lymphoedema. You may have been expecting to be feeling well again and leading a normal life. If your lymphoedema began shortly after your cancer treatment, it may seem like the last straw, on top of all the physical and emotional upheaval caused by having cancer. It is quite natural for you to feel angry about it; you may find the anger becomes less as you become accustomed to the daily treatment routine and the swelling begins to respond to the treatment. Resentment Having lymphoedema requires extra effort in taking care of yourself. Following your treatment routine can take up a lot of time. You may feel resentful about this, especially if others seem free to get on with their daily lives. Try not to bottle up your feelings but talk to the people close to you about how you feel. Between you, you may come up with ways in which they can help. For example, someone could learn to carry out the lymphatic massage for you, give you lifts to your treatment centre or perhaps help with the shopping, so that you do not have to carry heavy loads. Once you have become used to the routine of treating your lymphoedema and following the guidelines for controlling it, you will probably find it less of a burden and feel more able to enjoy your normal activities. Some people find the swelling eases within a short time, while for others it can take many months, but don't give up - there is nearly always some improvement with treatment. Depression Lymphoedema is an ongoing problem and at times you are likely to feel low or depressed about your situation. You may find it helpful to talk to other people who are living with lymphoedema, and the nurses at Cancerbackup can give you information about support groups in your area. Your doctor may be able to refer you for help. Lymphoedema may affect the way you feel about yourself, which may have a negative impact on your relationships with other people. People often need to feel happy with their bodies in order to have a fulfilling sex life. Fear that a partner - even a long-standing one - may be put off by the lymphoedema can make some people scared of physical relationships. The lymphoedema may also make it physically difficult to have sex. Often, talking about how you are feeling can help to relieve any worries you have about how you look. Some people are able to talk with their partner, others prefer to discuss things with a counsellor or sexual therapist. Your doctor or nurse can make a referral to a therapist for you if this would be helpful. http://www.cancerbackup.org.uk/Resourcessupport/Symptomssideeffects/Lymphoedema/Yourfeelings ---------------------------------------------------------- Medically speaking – anything but normal By Jennifer L. Boen jboen@news-sentinel.com Heather Sosenheimer picked up what looked like a photo album. But the pages contained no pictures of her three little boys, who were playing in the backyard, or of her teenage daughter, not yet home from school. In the see-through pockets were business cards, dozens of them. Rarely a week goes by when Heather and Rick Sosenheimer do not use the book to call a pediatric neurosurgeon, ophthalmologist or another of the many medical specialists their sons require. Conditions The unraveling of the family’s medical problems began in September 2005 with now-7-year-old Kedrick’s diagnosis of pseudotumor cerebri (see graphic below). His parents finally had an explanation for his intense screaming. “I kept saying, ‘Something isn’t right. He’d get this scream and wouldn’t quit screaming,” Heather Sosenheimer recalled. In a spinal tap, Kedrick’s cerebrospinal pressure was 23; normal is 5-15 in a child. His fluid pressure fluctuates, sometimes too high, sometimes too low. Either way, he is in pain. “He can only be up for about two hours before he has to lie down,” Heather Sosenheimer said. To an onlooker, all seems well with her son. It’s a mixed blessing. “People don’t understand why Kedrick can suddenly start screaming. They can’t see that he has a very, very bad headache that won’t go away. They’re thinking, ‘Can’t you get control of him?’ ” Heather Sosenheimer said. Within six months of Kedrick’s diagnosis, the family learned all three boys have rare brain conditions that include chiari malformation, pseudotumor (see graphic) or cysts. The pressure around the brain of Hunter, 6, was 55. Damage to the optic nerve, especially in his left eye, had already occurred. Drake Sosenheimer, 8, has three cysts in his brain and chiari malformation, although, unlike his brothers, his chiari has not required surgery. The family thought Hunter’s shunt, his third, was working OK until a few weeks ago. An eye specialist at Riley Hospital for Children in Indianapolis said Hunter’s vision is rapidly getting worse. When Heather Sosenheimer heard the news, guilt swept over her: “I have been so concerned with Kedrick that I have been ignoring Hunter. “But life is what you make it,” she said. “It’s not stopping just because they have these problems. You can cry yourself underneath the table. It isn’t going to make things any different.” Daily life The house comes alive when the school day ends. Seconds after getting off the school bus, the front door flies open and the boys head to the cupboard for a snack of peanut butter crackers. On the kitchen wall is a plaque that reads: “There will be no crisis today. My schedule is full!” It is wishful thinking for their mother. The boys attend Haley Elementary School and have chores around the house, including helping take care of the new puppy, Shannee; picking up toys; and doing homework. “Do we have Scouts tonight?” Drake asked his mom while stuffing crackers in his mouth. Kedrick and Drake just joined troops at their school. Hunter is a budding country music singer. “I want an amplifier,” he said, strumming his new guitar, a birthday gift. The sound of Kedrick’s thump, thump, thumping on the drums reverberated from the boys’ bedroom, while Shannee yipped with excitement. “They are so into music,” Heather Sosenheimer said. It is a wonderful normalizer for a family who, medically speaking, is anything but normal. Doctors knew some of the boys’ problems were likely genetic, although that is not always the case. Brain scans found chiari in Rick, Heather and daughter Markee Rase, 16, meaning all six family members have it. It is, for the most part, asymptomatic in Markee and Rick. On Wednesday, Heather Sosenheimer underwent surgery in Chicago to correct her chiari. She remains in intensive care and hopes to be home next week. Soliciting help from family and friends to care for the boys was just one more foothill in what is already a mountain of needs. While some people may have chiari and never realize it, “The familial or genetic chiari patients seem to have a more virulent form of the disease,” said Dr. David Frim, chief of neurosurgery at University of Chicago Comer Children’s Hospital and the boys’ neurosurgeon. The three boys share another, more unusual characteristic: double rows of eyelashes, part of a disorder called lymphedema-distichiasis. Each has his own additional medical problems. Drake has a heart defect, kidney abnormalities and spina bifida occulta, the mildest form of spina bifida (see graphic). Kedrick has high-functioning autism and recently scored below normal on an IQ test. He has had three surgeries and Hunter five to either fix the chiari or to put in or redo a shunt. Family pressures Rick and Heather Sosenheimer know it’s a strain on a marriage when there is a single child with disabilities. “The odds are against us,” Heather Sosenheimer said. But the odds are also almost inconceivable that two people with rare genetic conditions marry one another. “I just can’t go there,” she said. “There are moments when you want to blame the other person, when you get defensive. But you can’t blame anything. These things just happen.” Day by day, the couple continues to pull together. “You have to be communicators … try to find time for yourselves, little moments … You have to take time to sit back and relax a bit, catch your breath,” she said. Markee, who hopes one day to be a special-education teacher, is a dependable help with the boys. When one of the boys cries out in pain in the night, Rick Sosenheimer often is the one who gets up. He attends as many doctor appointments as possible. “It seems like every appointment they find something new,” he said. He praised his employer of 15 years, United Building Center, formerly Wolohan Lumber in Fort Wayne, for granting him time off when the boys have had surgeries or out-of-town appointments. Rick Sosenheimer’s overtime hours help cover medical and living needs, but even that is a mixed blessing. His earnings are just over the line to qualify the family for Medicaid medical coverage. Group health insurance is good, but deductibles, co-pays, travel, meals and sometimes hotel costs quickly add up. Four to five trips a month to Indianapolis or Chicago are the norm, which is why Heather does not work outside the home. “I always know when we’re going to be making a trip to Chicago – the price of gas always goes up,” Heather Sosenheimer said. A two- to three-day visit to Comer in Chicago runs about $250 – higher if there is no room at the hospital’s hospitality house. Together, the boys take 13 medications, a $300-$400 out-of- pocket monthly expense. Despite their bare-bones budget, Heather and Rick Sosenheimer, with the boys’ encouragement, threw a joint birthday party in October for their sons, asking guests to bring a toy donation for Comer. “We collected over 100 toys for the kids at Comer. The boys loved giving the toys to the hospital,” Heather Sosenheimer said. What the future holds The Sosenheimers’ greatest frustration, however, isn’t giving all the medications or even what they cost. It is not keeping track of the doctor appointments or the time and effort required to persistently advocate for their special-education services. It is that no one really knows what the future holds for their sons. Their sons’ combination of problems is uncharted territory. “We want to get help and to help others, but there’s very limited research on pediatric chiari,” particularly in conjunction with pseudotumor. “No one really has answers. There is no data bank for all this information,” Heather Sosenheimer said. Some geneticists have told the family the boys may have a syndrome of some kind, but to date, no one has an official name for it. “This is not Parkinson’s disease, not heart disease, not cancer,” Heather Sosenheimer said. “It is not getting attention and not getting funding for research. It’s going to take a celebrity or famous person’s kid to have this before it gets attention.” --------------------------------------------------------------------------------- Lymphedema changes everything Lymphedema: Condition 'changes everything' By Jane Grau The Salt Lake Tribune Article Last Updated: 01/29/2007 11:07:13 PM MST Therapist Nicole Kilgos wraps the hand and arm of Cynthia... (Paul Fraughton/The Salt Lake Tribune) Cynthia Minor has a busy life. She's a health inspector, a violinist and she teaches riding. In between, she makes time for therapy. She has lymphedema, a side effect of breast cancer surgery. "It changes everything," Minor said of adapting to the condition, marked by swelling in one arm. "I could write a whole book on coping." Enter certified lymphedema therapist Nicole Kilgos. She offers a treatment called "manual lymphatic drainage," or MLD, a non-invasive, hands-on technique that reduces the swelling caused when healing fluids carried by lymph vessels build up. Along with relieving symptoms, Kilgos teaches clients and their loved ones the self-care required for what will be a lifelong condition - there's no cure for it once it appears. "It's incredibly important that people understand that therapy isn't a 'treatment' where they go and get taken care of," said Kilgos. "Rather, we teach them how to integrate these exercises into their daily lives and to live happier and healthier." Lymphedema can occur when lymph nodes or vessels are removed during surgery, from other types of cancer or conditions such as obesity or chronic venous insufficiency. The symptoms - uncomfortable heaviness, swelling and tenderness in the arm and trunk - appear gradually, but in extreme cases, can cause such pain that even a ride in the car can be excruciating. Without proper therapy, lymphedema compromises the immune system, so infections can arise quickly in the affected area. Minor has noticed that a scratch on her affected arm will take weeks to heal, as opposed to days on the other. She is grateful she was able to address the condition early. It is not uncommon, said Kilgos, for doctors to not mention lymphedema to patients, or not know what to do about it when it occurs. "We can make it workable even in late stages," said Kilgos, "but catching it early is wonderful - it makes it easier to manage, to integrate into daily life and to prevent further damage to the lymph system." --- * JANE GRAU can be contacted at 801-257-8694. What is lymphedema? A build-up of lymphatic fluid, usually in the trunk, arm or leg. The fluid is made up of protein, water, fats and wastes from cells; lymph nodes filter wastes and return the fluid to blood. If lymph vessels or nodes become damaged, the fluid cannot move freely and can cause swelling. What causes it? Lymphedema can be inherited but is usually acquired. Twice as many women as men get it. The most common causes of acquired lymphedema are surgery or radiation treatment for several types of cancer, such as breast, pancreatic, prostate and testicular cancers. An estimated two to three million people are affected each year in the U.S. For more information about treatment for lymphedema, call Nicole Kilgos at 801-487-8388. Source: Society for Vascular Surgery -------------------------------------------------- Getting the Most from your Doctor's Appointment Doctors spend on average only a few minutes with each patient they see for routine examinations. (Of course, there is often time out of the exam room that is spent reviewing the chart and records.) The experience can be both confusing and frustrating when communication on one or both sides is lacking, particularly if you're presented with new information to process or new instructions to follow. While a visit to the clinic can be intimidating for anyone, you can lessen the stress and worry associated with doctor's appointments by taking steps to be sure that you're provided with all the information you need at the appointment. There are also ways you can improve the quality of your care by helping your doctor develop the best understanding possible of your symptoms and condition. Before the appointment, write down a list of things you need to tell the doctor. Note any concerns or questions you may have. Also write down the names and dosages of any prescription, over-the-counter medications, or supplements you are taking. It is very important to take this list with you to the appointment – don't count on remembering every single item. Before you leave the office, go over the list to be sure you've covered everything. This simple step benefits both you and your doctor by keeping the discussion focused and ensuring that all your concerns are addressed. Don't hesitate to use the words "I don't understand." Doctors are only human and may not always know when they haven't explained something well or in terms you can understand. Never feel embarrassed or shy about asking for clarification about something your doctor says. When in doubt, repeat back what your doctor has told you and ask if you've got it right. You can also ask if he or she recommends any specific reading materials about your condition. If your doctor asks questions that sound embarrassing or overly personal, remember that the information you provide enables him or her to better establish a diagnosis, or to determine which treatment is most appropriate for you. Never fib in response to questions about alcohol or drug use, sexual history, or other lifestyle matters. Be honest about the extent to which you are taking your prescriptions or following a treatment plan. Withholding the truth can affect the quality of your care and can even lead to a wrong diagnosis. Finally, the office medical assistants and nurses can be an additional resource of information. Do not hesitate to ask them questions about your concerns as well. Advance preparation for your doctor's visit is a vital step toward becoming a partner in your own health care and an advocate for your health and well-being. A good doctor will always encourage your desire to understand as much as possible about your condition and will welcome your active participation in your care. source: http://www.medicinenet.com |