Lymphedema

Question: Lymphedema? My friends aunt just got diagnosed with lymphedema. I have been searching online and found some good sites with information about this disease, but I was wondering if there was anyone out there who can lead me to other sites or share their experiences with this desease.

Answer: Lymphedema is a condition which can occur as a primary cause, as in Milroy's disease, or as a secondary effect of lymphnode removal. Most people are familiar with lymphedema as a secondary effect after someone has had breast cancer surgery. This disease is characterized by an inefficiency of the lymphatic system which is responsible for returing lymph back to normal circulation. Lymph is a collection of fluid, proteins, and cells which support the immune system. When lymph collects in the tissues, it causes swelling and a "fibrosis" or firmness of the affected extremity. This can cause a loss of function of the extremity such as making it difficult to use the arm for daily acitivities. The most important factor to consider in lymphedema is that the build up of proteins is a prime source for infections. These infections are called dermatolymphagionitis, or commly known as "cellulitis." It is a potentially life treatening infection. Therefore, managment of lymphedema is very important. Treatment of lymphedema is usually CDT, or complex decongestive therapy which is usually a combination of a very specific massage called manual lymph drainage, multialyer bandaging, and sometimes a compression pump. This is usually performed by a physical therapist who has undergone additional training to perform this. Once the size of the arm is reduced, the patient is fitted for a compression garment which is worn daily. The disorder requires life long management of compression garments and protecting the arm from trauma. Here is a website that can help you locate a lymphedema therapist near you: http://www.lymphedemamanagement.com/

Question: How do you massage the swollen arm (lymphedema) to reduce its swelling? My mom recently had a mastectomy, and now she has lymphedema on her left arm. Massage always comes up as one of the ways to decrease the swelling of the arm. However, I haven't found anything on how to massage the arm to prevent it from further swelling, or to reduce its swelling. Would help a lot if there are instructions on how to massage the arm. Thanks!

Answer: If she has lymphedema, the first thing she needs to do is seek a qualified physical therapist or massage therapist that has undergone specific training for the treatment of this disorder. Do NOT try to massage it yourself...the lymphatic system is very delicate and can be easily compressed if you have not been specifically trained in how to treat this. In fact, traditional deep tissue massage can actually make it worse. Research shows that the most effective treatment is a combination of this special massage (manual lymph drainage) and multilayer bandaging until she can be fitted for a garment that she will wear on a daily basis. Use of a compression pump is also often used. To truely address the problem, she needs to go through the manual lymph drainage first prior to getting a compression garment. Failure to do this could result in infection and/or a poorly fitted garment. In the meantime, avoid things that can make it worse...do not allow her arm to be punctured, scratched, etc. Avoid excessive use of the arm, but use it for normal daily activities such as grooming. Do not allow anyone to take her blood pressure or put an IV in the arm, and do not let her travel by airplane at this time. Then, ask for a referral to a QUALIFIED professional...they should have specific certification credentials in the treatment of lymphedema. You can find a list of providers at: www.lymphedemamanagement.org

Question: How many peolple in Canada have been diagnosed with lymphedema? At the age of two I was diagnosed with lymphedema and now I want to know how many people in Canada have also been diagnosed with it. And if you can please find out how many cases have lead to flesh eating diseases.

Answer: Greetings, Eric I'm Tina of Lymphland International Lymphedema Online support group and website. Right now there is a conflict of how many cases prevail in the US, Canada and other countries simply because there is a debate going on and a clinical study being done by Dr. Stanley Rockson. The debate is whether secondary lymphedema patients really have secondary lymphedema or if they were primary patients all along who had no symptoms until something triggered the condition to surface. There are no known stats for Canada for primary or secondary. U.S. estimates show three to five million people are affected with "secondary lymphedema." This group is made up mostly of individuals who have had their lymph nodes removed and have received radiation for breast cancer. I, myself, acquired lymphedema from cancer surgery and was told I had secondary lymphedema only years later to find out I am really a primary person with a secondary trigger. It's a pretty interesting study. Now, filariasis is the parasite form of lymphedema, 120 million people worldwide are affected, according to the World Health Organization. Canada is working on improving diagnostic tools for diagnosing lymphedema and right now there is a new tool out called the Impedimed which can help diagnose the condition faster, it's a great resource for primary patients like yourself, if you ever have children and want to monitor them so in the event they inherit the genetic tendency, they can be treated faster. If you are interested in joining a support group or reading more on lymphedema my website is http://www.lymphland.com and there is a button to join the support part of the group on the first page. As far as the flesh eating diseases, if you take care of your lymphatic affected areas, it should never get to that. Most of the flesh eating conditions come from strep and are acquired in hospitals. There are between 90 and 200 cases of necrotizing fasciitis per year in Canada, about 20 to 30 per cent of these are fatal. The infection you have to worry about is cellulitis, which almost all lymphedema patients have at one time or another, it can turn fatal if not treated soon enough or with the proper medications. Usually it turns septic, meaning blood poisoning.

Question: Any good yoga poses for people with Lymphedema? I have Lymphedema. lymphedema is not draining much especially around abdominal area. Are there any good yoga poses for lymphedema drainage? I go to yoga off and on but I'd like to try some good yoga poses on my break time during work.

Answer: Hi, My Daughter has Lymphangioma Aka Cystic Hygroma Aka Lymphatic Malformation. I can give you lots of Tips for helping to drain the Lymph fluid that is collecting in your Abdomin. The Big one you know which is exercising. But Yoga may not be doing enough for you. There are several reasons why a lymphedema occur in different people but most of the end results are the same. You need to do muscle stretching exercises that are repetitive. Moving your Muscles help massage the Lymph Channels and propel the fluid through the chanels to the correct destination. Doing Yoga part time is not nearly enough! But There is a safe and Fun alternative. Rebounding Aka Jumping on a trampoline or a resitant bouyant exercise ball. Rebound Exercise has been known to: Strengthen muscles, tendons and ligaments, Help bones become mineralized, dense and strong, Help develop balance and coordination, Maintain Homeostasis, Improve the flow of blood through the small blood vessels of the bones, Increase the heart’s pumping power, Increase lymphatic system circulation, Improve efficiency of the immune system. It helps you look better and feel better. It gives you a sense of control of your overall health

Question: What kind of exercises could I do for lymphedema in my legs? My right leg has lymphedema from my ankle to my thighs.

Answer: http://www.lymphland.com/exercises.html http://www.lymphland.com/legexercises.html Greetings, these 2 links are to my website where you can find pictures and instructions for exercises to promote lymph flow. These are recommended exercises from the American Cancer Society. If you have not gone for lymphedema therapy called Complete/Complex decongestive, that is the recommended treatment for lymphedema. The best thing you can do is to learn all you can about it and keep up to date on progress on lymphedema research as there could be a major development in the near future. http://www.lymphland.com is my site and there is a button to join my support group if you wish, but definitely browse around and read all you can. Hope the exercises help.

Question: How much fat and salt dose a person with lymphedema need daily? I have lymphedema in my right leg, but I don't know what caused it.

Answer: Actually....You need to watch your salt and fat intake. What Causes Lymphedema? Primary lymphedema, which can affect from one to as many as four limbs and/or other parts of the body, can be present at birth, develop at the onset of puberty (praecox) or in adulthood (tarda), all from unknown causes, or associated with vascular anomolies such as hemangioma, lymphangioma, Port Wine Stain, Klippel Trenaury. Secondary lymphedema, or acquired lymphedema, can develop as a result of surgery, radiation, infection or trauma. Specific surgeries, such as surgery for melanoma or breast, gynecological, head and neck, prostate or testicular, bladder or colon cancer, all of which currently require removal of lymph nodes, put patients at risk of developing secondary lymphedema. If lymph nodes are removed, there is always a risk of developing lymphedema. Secondary lymphedema can develop immediately post-operatively, or weeks, months, even years later. It can also develop when chemotherapy is unwisely administered to the already affected area (the side on which the surgery was performed) or after repeated aspirations of a seroma (a pocket of fluid which occurs commonly post-operatively) in the axilla, around the breast incision, or groin area. This often causes infection and, subsequently, lymphedema. Aircraft flight has also been linked to the onset of lymphedema in patients post-cancer surgery (likely due to the decreased cabin pressure). For more information, see the NLN Position Paper on Air Travel (pdf format, 231kb). Another cause of lower extremity lymphedema is that resulting from the use of Tamoxifen. This medication can cause blood clots and subsequent DVT (deep venous thrombosis). Radiation therapy, used in the treatment of various cancers and some AIDS-related diseases (such as Kaposi-Sarcoma), can damage otherwise healthy lymph nodes and vessels, causing scar tissue to form which interrupts the normal flow of the lymphatic fluid. Radiation can also cause skin dermatitis or a burn similar to sunburn. It is important to closely monitor the radiated area for any skin changes, such as increased temperature, discoloration (erythema) or blistering which can lead into the development of lymphedema. Be sure to keep the area soft with lotion recommended by your radiation oncologist. Lymphedema can develop secondary to lymphangitis (an infection) which interrupts normal lymphatic pathway function. A severe traumatic injury in which the lymphatic system is interrupted and/or damaged in any way may also trigger the onset of lymphedema. Although extremely rare in developed countries, there is a form of lymphedema called Filariasis which affects as many as 200 million people worldwide (primarily in the endemic areas of southeast Asia, India and Africa). When the filarial larvae from a mosquito bite enters the lymphatic system, these larvae mature into adult worms in the peripheral lymphatic channels, causing severe lymphedema in the arms, legs and genitalia (also known as Elephantiasis).

Question: Can you please tell me anything and everything you know about lymphedema? I am a teenage girl who's the left foot became swollen for the first time last week and they diagnosed it as lymphedema. I am now wearing a compression sock in order 2 try 2 prevent swelling. Can you please tell me what the worst case scenario of having lymphedema is, where i could possibly get compression socks in colors other then black, tan, and browns (besdies getting ones made for me) and anything and everything else u no abot lymphedema? Thanks!

Answer: Hi Kasi, I'm Tina, and I'm an ask the expert panelist on lymphedema. You can see on my profile my associations etc. Yes, you can get compression stockings in any color or pattern you want, Lymphediva's is the fashion place to go to for what you want. I hope your doctor has referred you for combined decongestive therapy, that's the gold standard treatment for lymphedema especially when it first shows up and with your age, you're a prime candidate for it A therapist would work on you similiar to a massage but it's specialized and what happens is the therapist pushes the fluid out manually to get you to the most normal size as possible, then you wear the compression to keep it the smallest. The therapist would teach you how to do the bodywork yourself. I've had lymphedema for 13 years. My foot/leg stays normal most all the time without the stocking because I do the bodywork 4 times a day, you can possibly get to that point. Lymphedema is broken down into 2 words. Lymph which is the colorless to milky colored fluid in your body. Edema, which means swelling. Lymphedema occurs when fluids build up in the soft tissues of the body. Lymphedema is pronounced: Lim-fee-dee-ma. It can be spelled a variety of ways such as lymphoedema, lymphadema, etc. All the various spellings mean the same condition. http://www.lymphland.com/ is my website and you can read about anything and everything you ever wanted to know about lymphedema there. There is also a button on the front page to join my support group if you are interested. Please feel free to contact me through the website so it comes directly to my email if you have any questions or concerns. Tina

Question: What aromatherapy oils can be used for lymphedema? Lymphadema in this case is extreme swelling of the bottom of the legs. The pressure becomes extreme and the legs then have to be elevated. The person in question also has epilepsy.

Answer: GREETINGS, Hi ET, I'm Tina. First off, has the person had any treatment of the lymphedema? He/She should be treated with complete/complex decongestive therapy which is a combination medical treatment. It consists of medical massage called manual lymph drainage therapy, skin care, bandaging with special wraps, and exercises to promote lymph flow. This is done by a qualified certified lymphedema therapist. Sometimes aroma therapy is used along with the lymphedema treatment. For the epilepsy, is it controlled with meds? Was the person in an accident or just had the unfortunate luck to have both conditions? Breathing is very important in lymphedema. Breathing moves the diaphragm and deep breathing promotes lymph flow. Frankincense, Grapefruit, Hyssop, and Lavender can be used to help soften scars and lavender is a known calming scent. Cajeput, Frankincense, Hyssop, Lavender, Sage, and Tea Tree oil help skin contractures. Sometimes side effects of radiation esp in the abdomen are poor bowel function and scarring. Massing the oils over the abdomen can help soften scar tissue and improve functioning of the intestines. Grapefruit, Fennel, Helichrysum, Lavender, Myrrh, and Sage are used for this purpose. Often carrier oils that are used for lymphedema conditions contain proteins and can increase the lymphatic load. Grapeseed Oil and Safflower Oil are such oils. Bay Laurel, Chamomile, Geranium, Helichrysum, Lavender, Patchouli, and Vetiver in a combination of Castor Oil, help under bandaging to help soften tissues. Chamomile, Geranium, Lavender, Lemon, Sage, Tea Tree, and Ylang Ylang. This mixture also aids in preventing athlete’s foot, and helps keep areas soft, thus lessing fibrosis. Always test the oil on a small patch if used on the skin before applying alot of it in case of allergies.

Question: I have mild-moderate Lymphedema in my arms. How can I reduce or get rid of it? My doctor said it wasn't anything serious,just some localized fluid retention, but that it would explain my unusually "large" arms. Should I use like, slimming gel or shapewear or something to help reduce it or get rid of it?

Answer: 1) lymphedema massage by a good Physical therapist 2) compression sleeves 3) a pneumatic compression pump

Question: How does one become a certified lymphedema therapist? Serious answers only please!

Answer: You must first become a physical therapist or a massage therapist (6-7 years for a PT, about a year or two for an MT) and then must go for post entery level cerfications. A number of credentialing organizations exist such as LANA and ICLM, etc. LANA is probably the most recognzied, but is criticized by some because it allows massage therapists to become certified. The stance of other professional credentialing bodies is that MTs do not have the training in pathoanatomics to truely understand the medical implications of lymphedema, nor are they qualified to address the functional limitations that occur with lymphedema such as impaired gait, balance, upper extremity function, etc. Other credentialing bodies limit certification only to PTs, OTs and MDs. There are several "schools" of lymphedema managment including: Vodder (probably the most recognized, but not necessarily the most sustantiated) Norton Foldi ICLM, as well as many others. ...Whatever the school, it usualy requires an intensive amount of classroom and hands on training. Basic certifications can be as little as 40 hours wheras LANA and other advanced cerifications are over 100 hours of training.

Question: What is lymphedema and what are the potential causes? I just know it is fluid its the lymphatic system caused by trauma

Answer: Hi Kendra, lymphedema is the build up of lymph fluid in the body, lymph fluid consists more than water in the body, it's cellular debris, virus remnants, germs, bacteria, plasma, etc. There are many causes, primary lymphedema also known as Milroy's Disease, is either caused at birth or surfaces later in life. Usually primary lymphedema comes from having less lymph nodes than the average person or a malformation of the nodes you have present. Secondary lymphedema is caused by a source such as cancer, tumors, damage to the nodes, removal of the nodes, etc. Primary lymphedema can surface later in life as well because sometimes your body can handle having less lymph nodes until something happens to you like a fall, cancer surgery usually breast removal, etc. I'm a primary lymphedema patient who had lymphedema develop after breast cancer surgery. I'm not secondary lymphedema because I was born with less than average nodes, it was the trauma of the surgery that slowed down my lymph system and caused the lymphedema.

Question: Should I see a regular doctor if I think I have lymphedema? I haven't been diagnosed yet, but I do have swelling of lower legs, ankles and top of feet.

Answer: Hi James, Yes...you can start off by seeing your PCP or family doc---or internist. The first order of business will be to determine the underlying cause for the lymphedema, of which there are several common causes. You will probably have an EKG done as well as some routine bloodwork. You didn't mention your age, but most commonly ankle/leg swelling indicates a problem with venous blood return. Your doctor will likely put you on a restricted sodium diet, may prescribe a diuretic, and of course depending on the extent of the lymphedema, may recommend other treatment modalities. Until you get the appointment with your doctor, you might want to keep you legs/feet elevated as much as possible. Mild to moderate venous pooling can often be significantly improved by elevating the legs (say on a footrest) when sitting on a chair; the elevation helps to combat the physical force of gravity, making venous return easier. There are other more serious underlying causes for this----but I won't go into those at this time. This answer should give you enough information to get you started on getting rid of that annoying swelling. I wish you all the best.

Question: How do I prevent ankles from swelling due to lymphedema caused by abdominal surgery? Is there anything I can do? I'm still young and don't want to wear compression stockings!!

Answer: You can keep them elevated(on a footstool or pillows). This increases circulation and makes the swelling go down.

Question: I have a disease called Lymphedema and it doesnt let me wear what I want. How can I start my own fashion line. I have to go to Physical therapy and wear bandages and a garment and its really hard to cope with

Answer: Good for you to take control of a learn how to manage your condition as well as recognize the need for women (and men) for clothing! Once you've got some designs, I would contact vendors who sell medical support wear (compression stockings). I'd also see if you can get a link on the lymphedema network website. I'd also suggest a shoe design that accomodates the multilayer bandaging (besides a sugical shoe).

Question: I have painful wounds on both calves, cellulitis and lymphedema. Any answers for relief? I've been to several w/c centers and doctors all with mixed advice. Wounds are like 3 yrs of battle and pain ........I've had enough any help greatly appreciated.

Answer: hello im julie manager of lymphland and co owner of lymphland web site and online support group for lymphedema .u need to be on antibiotics for the infection .u also need to get therapy for the lymphedema .come join our support group we can help u get the help u need or point u in the right direction http://health.groups.yahoo.com/group/lymphland/ hope to see u in the group if u dont want to join the group you can get information at www.lymphland.com

Question: Hello, im 22 years old and i have had lymphedema since i was eight, how will pregnancy effect my lymphedema? I have had lyphedema since i was eight years of age,(in my left leg/foot) im 22 now, and my husband and i are thinking about having a baby. im curious as to know how pregnancy will effect my lymphedema? and what risks are involved with carrying a baby with having lymphedema?

Answer: this website should help u. http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_and_pregnancy

Question: My wife has a health problem that requires a Lymphedema pump for her legs. We need to find a new or used pump? Possibly someone who once had a need for this pump may not need it any longer. We would like to be put in touch with them.

Answer: My sister found hers on Ebay. Check there. Also check Craig's List in your area, but buy only from an individual who is willing to meet you, let you see the item, etc. Any deals that require you to go through Western Union are scams so beware.

Question: What are the complications of lymphedema debulking surgeries?

Answer: 1. Massive, permenant nerve damage. Parts of my leg are so nerve dead you could literally put a knife into and not feel it. Other parts are so sensitive that even to touch it feels like your digging into it with a shovel. If my knee itches, I scratch my thigh. 2. The swelling will return. Can you imagine trying to have MLD with this kind of nerve damage? And because the leg is so disfigured, even wearing compression garments is a challenge. So when the swelling returns you may well be stuck with it. 3. Fibrosis - mind you both legs have lymphedema. But it is the one that I had the debulking surgry on that is a complete mess and write off. It is like a chunk of granite. Ulstrasounds just bounce of it. It really hastened the tissue hardening. 4. Infections - because of the hardening of the tissue, infections have become almost uncontrollable. Forget oral antibiotics when they hit. The oral ones simply are unable to penetrate adequately the tissue. Bacteria go into wonderful little hardened areas where they are safe. My infections are now only controllable (notice I'm not saying curable) by intense IV antibiotics. Even as I sit here, I am on them yet again. Last year they had to install a chest port because lymphedema started in my left arm and my veins are shot from so many IV's. Another thing about extreme fibrosis is that it eventually starts crushing your blood veins and arteries, which also sets you up as a prime candidate for a blood clot. Mind you, because of this a clot is going to be almost impossible to diagnose because no radiology test is going to penetrate the leg. 5. Skin changes - Even an elephant wouldn't want the skin on my left leg. Despite the consistant use of lotions, it is terrible. I now have extreme plaque formation and lots of papillomatisis. 6. Here's the scariest one and one I have bunches of questions on. My first type of lymphoma started in that left leg. I had a 1 1/2" spot on the back of the calf which turned out to be mixed B cell lymphoma. 7. Skin grafts - I had to have several skin grafts to close up areas where the skin didn't heal, but instead died. One of those spots was the size of your hand and it took using skin from a cadaever to "seed" the subcutaneous tissue to close the wound.

Question: What is the expected life expectancy for someone in stage 3 lymphedema? I am caring for someone who is in stage 3 of lymphedema (NOT lymphoma), known at Elephantitis (Sp?). Her stomach and legs are bloated with benign tumors growing on the surface. These have to be cleaned daily. She has irregular heartbeat and is on oxygen 24/7. She is my dear friend and I just want to be prepared for her passing.

Answer: GREETINGS, Paxton, Does your friend have other health issues besides lymphedema? any heart issues? Lymphedema is not a death sentence, it can be deadly yes when you have an infection or cancer causing it but there is treatment, even in stage 3. What are her doctors doing? How are they treating her? The normal treatment for lymphedema is complete/complex decongestive therapy which consists of manual lymph drainage which is a form of medical massage. It is done by a certified lymphedema therapist who will also help you do special exerises and stretches to promote lymph flow, skin care, and wraps/compression garments will be provided to help keep the area of swelling down. Has she seen a therapist? Somehow I am picturing her very swollen, sores on legs, you said tumors too, I just wonder if her doctor knows how to help her. I hope she's not on diuretics unless they are given for blood pressure. Lymphedema is progressive and without treatment it will worsen. Probably the fluid is in her chest and abdomen area, that's called truncal lymphedema. She definitely needs help. Please email me more details, if we can help her, that would be good.

Question: Are there any cures on the horizon for Lymphedema? I have had it in one leg for 12 years, resulting from an accident. I have been through years of MLD/CDT and it has mostly remained the same size, getting a little bigger each year. Cannot wait to GET RID OF THIS. I hate it in summer, it's so uncomfortable and I look like a freak in skirts and shorts. Are there any cures or medications on the horizon? ASDF you are a real asshole. Go back into your basement crawlspace.

Answer: Dr. Stanley Rockson of Stanford University is completing some very interesting research regarding gene therapy for VEGFs (vascular endothelial growth factors)...these growth factors are being used to help cells differentiate into functional lymphangion cells in order to compensate for or replace (sorry, I don't know which) dysfunctional lymphangion cells. To the best of my knowledge, this is still in the animal testing phase. Looks very promising. Look him up if you are in the area...perhaps he has some studies going on. Do you have a home pump? Flexitouch has recently come out with a pump that actually mimics the phases of MLD. In the meantime, CDT remains the gold standard of treatment.