LYMPH Link Article Reprint

Transcription

1 LYMPH Link Article Reprint Volume 14, No. 2 April~June 2002 Managing Complicated Lymphedema By Susie Wills, BSN, RN, CLT-LANA, and Cherie L. Hoskins This article is written in an attempt to answer many of the questions that are directed to the NLN by patients, regarding difficulties with their lymphedema. Since lymphedema is complicated in and of itself, treatment and management can be extremely challenging for both the patient and therapist. The key to success is to remain open-minded, stay up-to-date on what resources are available to you, and persevere. I preface the following information by stating that the Healthtronix team, led by Cheri Hoskins, CCT and President, has done multiple comparison studies to determine which products are most effective. The products mentioned in this article reflect those findings and our experience in troubleshooting. We also have a high rate of compliance by our patients due to the multiple choices and quality of products that are made available to them. There are many products advertised for lymphedema and not all work for everyone. This is where the perseverance comes in! BASICS OF SELF-BANDAGING Please do not attempt to do bandaging without being instructed by a certified lymphedema therapist. If bandaging is not done properly, it can actually do more harm than good. Bandaging requires training and practice to learn proper, effective application. The following instructions cannot replace hands-on training. 1) Skin must be clean and dry. Lotion must be applied to entire foot and leg or hand and arm, whichever is the case. The lotion should be unscented, mineral oil based, and without petroleum products. Eucerin and Lymphoderm lotions are the two I use most. Eucerin can be purchased at discount stores and pharmacies. It is very moisturizing and healing. Lymphoderm is a mixture of natural ingredients and also contains citronella. This can be helpful during spring and summer when the weather is warmer and insects are out and about. It is a lighter lotion than Eucerin and many patients prefer it for that reason. 2) If you have skin folds at the ankle, knee, or wrist, apply clean soft padding, such as Artiflex, smoothly into the folds to prevent skin-to-skin pressure. This absorbs perspiration and helps prevent skin breakdown and infection. Use clean padding in these areas each time you bandage to prevent perspiration and bacteria, which the padding absorbs, from being transferred back to your skin. 3) Tubular gauze or stockinette should then be applied over the affected limb. Make sure that this gauze makes a well-fitted stocking or glove and is smooth and unwrinkled before continuing. 4) Toes or fingers should be wrapped with a stretch gauze (e.g. Mollelast ). If edema pools on top of the foot or hand, consider using some of the products named later in this article to add high/low pressure in order to increase lymph flow and soften fibrosis. 5) Foam padding should be applied at pressure point areas such as the ankle bones, wrist bones, elbow, knee, etc. These foam pads can be purchased precut or you can buy the foam and cut them to fit your needs. 6) You must apply a full layer of padding over the entire limb. Because your finished bandage should be cone-shaped, use foam rolls, Artiflex, or both to cover the limb and fill in the spaces, using different shaped pieces to obtain this shape. This padding also helps to distribute the pressure evenly. 7) Isoband can then be applied over entire limb. This holds your pressure pads and applied bandages in place and leaves a much better surface to apply your short-stretch bandages. 8) There are many brands of shortstretch bandages and everyone has a favorite. I use Rosidal-K by Lohmann. Remember to launder your bandages often and properly to retain their stretch. Roll the bandages using a small amount of stretch when you do. This makes them easier to apply. Always have two complete sets of bandages so you can wash one and wear the other. When your bandages begin to lose their stretch, order new ones immediately. If you are not sure if they need to be replaced, talk to your therapist or bandage provider. 9) Remember to keep the pressure even so that you do not have a tourniquet effect anywhere on your limb. This can cause serious problems, so if the bandage does not feel right or is painful, take the time to unroll and re-bandage. 10) Do not substitute long-stretch bandages for short-stretch. Ace bandages are probably the best known bandages, but they are long-stretch and should never be used when doing multilayer bandaging for lymphedema. BANDAGING ALTERNATIVES Bandaging is absolutely necessary during MLD/CDT treatment. Your limb will reduce during therapy and bandaging affords adjustment to the size of you limb. At the end of your treatment, you will be fitted for a compression sleeve or stocking to wear during the daytime. These garments must be fitted when your limb has reached maximum reduction. If the garment is too large, it allows your limb to swell. If the garment is too tight, it can cause pain and skin irritation. These garments are not to be worn at night while you sleep, because the pressure they provide is designed for a National Lymphedema Network Latham Square 1611 Telegraph Ave. Suite 1111 Oakland, CA Tel: Fax:

2 limb that is working and moving. If self-bandaging is problematic for you, you may want to consider one of the products marketed for use as a replacement for bandaging. REID SLEEVE The Reid Sleeve is worn at bedtime instead of bandaging. Many patients find it difficult to self-bandage properly. The Reid Sleeve proved to be more effective than bandaging for many patients. We found that patients were much more prone to be compliant with wearing the Reid Sleeve when they had not been with bandaging. The Reid Sleeve uses convoluted foam to apply high/low pressure, which activates the lymphatic system to drain more efficiently and also softens fibrotic areas. Each sleeve comes with a gauge which the patient can use to insure that they are using the correct amount of pressure on their limb. This is a great advantage over bandaging and is my choice for an alternative to bandaging. Helpful Hints for using the Reid Sleeve 1) If you have a problem with swelling in your foot or hand with the Reid Sleeve, there are foam pads that can be used in conjunction with the device. 2) Re-gauge your Reid Sleeve at least weekly. Choose a day of the week to gauge your sleeve and be consistent. If you do not re-gauge your sleeve on a regular basis, you will not get the maximum benefit from this wonderful tool. 3) If your Reid Sleeve appears to be turning inside out, make sure that when you don and doff, that you do not pull the inside material. Use the boot straps for the leg sleeve or grab both inside and outside material, making certain that all straps are loose before gently pulling up the sleeve. TRIBUTE I recently was made aware of a new bandaging alternative called the Tribute. Since I have not had the opportunity as of yet to try this line of products, I asked my colleague, Katina Kirby, P.T., who uses many of the Tribute products, to comment on her experience: The design concept of the Tribute garments uses different densities and shapes of foam chips along with quilted directional flow to help move the lymphatic fluid and break down fibrotic tissue. In our lymphedema center, we find that we order many of the Tribute products because of their versatility and the ability to adapt the product for specific patients. For instance, we will bandage over them to decrease the fibrotic tissue, use them on extremities while performing MLD to the trunk area, or even use them under a compression pump sleeve. Although we prefer that a person bandage over the Tribute, the Tribute alone sometimes solves the problem of a person who is not able to bandage him/herself. Recently, they have developed a sleeve to wear over the Tribute in lieu of bandaging. I still prefer the bandages, but again, when bandaging is not an option this also works. I especially like the swell spots for fibrotic lymphedema because you can easily place them in a sleeve or under bandages. This works very well for dorsal hand lymphedema under gloves. We have used the Tribute in hard to bandage areas as well. For instance, we have been successful in using the vest for trunk lymphedema, the mask for facial lymphedema, and the genital garments for both males and females. Most patients find the Tribute comfortable and easy to care for. Currently, we have been using the Tribute products for our pediatric patients. The baby booties work well for lower extremity lymphedema in infants, and the below-knee boots work well for children with lymphedema. There are many wonderful uses for the Tribute products and I recommend giving them a try. One of the best things about working with this manufacturer is that they will redo the product until it fits correctly and are willing to make necessary adaptations to the garments (i.e. loops, zippers, etc). COMPRESSION GARMENTS Compression garments are designed to be worn during the daytime only. Many brands, styles and colors are available. Make sure that you are given a variety of choices when ordering your garment. Remember, you will be wearing this garment every day and it needs to look and feel the way you will be willing to wear it. Make sure that the person who measures you for the garment is certified to do so. The fit of your garment is extremely important to your continued success in managing your lymphedema. Compression garments should be replaced every 4-6 months since they lose their compression after this time. Some women wear the same sleeve for years every day, and are then amazed when their arm gradually becomes more and more edematous. This is why it is so important not only to be compliant in daily wearing of your garment, but also to keep replacing garments regularly. If your fingers and/or hand tend to swell, they will also need compression. There are several varieties to choose from: you can get a full length sleeve with the hand portion attached, or one with a separate hand cover called a gauntlet. These can be made where they do not cover your fingers if you do not have finger edema. They can be made to cover up to the knuckles or to the cuticle area of your nails. These also must be replaced every 4-6 months. An advantage of the full-length sleeve is that there are no seams or overlap to cause constriction; however, many prefer the separate gauntlet, which allows them to remove it to wash their hands. Compression stockings normally do not provide compression for the toes. If you have edematous toes, you can be fitted for a foot gauntlet which applies compression around each toe as well as the foot. For edema in the chest, side and back area, compression vests are available from the same companies that make the sleeves and stockings. These work well if you are able to tolerate them. In Texas, where I practice, they are a hard sell due to our hot, humid summers! Some women have been able to obtain adequate compression from leotards, fulllength bras, body suits, etc. If at all possible, it is best to have limb garments without seams or zippers as most patients do not tolerate these well due to irritation. Helpful Hints for Compression Garments 1) If you have chaffing from compression garments wrinkling in the creases of your leg or arm or if they tend to roll down, It Stays is a body glue made especially for compression garments. Dot a little in the problem area, don your garment over it and it stays. 2) If you continue to have difficulty with garments rolling down, you may want 2

3 to consider a compression sleeve with a shoulder strap, or a waist strap for the stocking. Compression pantyhose are also available. Some garments have silicone borders around the top which are also helpful in preventing garments from rolling down. 3) Do you have a limb with large skin folds or lumps that are hard to control, making it difficult to find stockings/sleeves that fit? Elvarex, a custom garment, is a wonderful product (garment), manufactured by BSN-Jobst, that actually contours to the shape of your limb, taking every lump and fold into the actual design of the garment. 4) If you have pain on the knuckles or the sides of the had while wearing your gauntlet, there are pressure pads available that can relieve this discomfort, improving the fit and effectiveness of your gauntlet. 5) If you have small protrusions of the skin (papillomas) on your toes, a foot gauntlet (glove) will provide compression to each individual toe which does help the protrusions to recede. 6) If you find it difficult to don your compression garment, some aids are available. EZ-Slide is an aid that fits over your hand and wrist, or foot and ankle, that is made of a material that the garment can easily glide over. A plastic newspaper bag or loaf bread bag can also be used, but it is not as durable as the EZ-Slide. 7) Compression garments have memory! They will stretch to a certain point while worn and then do not retract until washed. Therefore, daily washing of your compression garment is imperative to continue to receive proper compression. 8) Make sure that when you obtain your garments that you also get the manufacturer s directions for laundering them. These directions vary from garment to garment, so each time you purchase one, ask for these instructions and follow them carefully. 9) If you have a tendency to snag your garments, wear rubber gloves over your gauntlet while washing dishes, doing household chores, or gardening. 10) Save your old garments to use when you swim. Swimming and water aerobics are excellent exercise for your lymphedema. Note: For exercise not performed in water, be sure to wear your newest, most recently-fitted garment! 11) It is imperative that you be measured and fitted by a certified fitter/therapist who also checks the garment after the initial fitting. SPECIAL PADS FOR DIFFICULT AREAS KT PRESSURE PACKS These packs come in various shapes and sizes and are filled with buckwheat hulls. They are particularly effective in joint areas, as well as in creases and crevices where edema persists and/or fibrosis has formed. I use them most often in the ankle area over the stockinette and hold them in place with Isoband. I have also used them on the arm, at the elbow area where fluid tends to pool and fibrosis forms, and in the upper arm. KT Medical also makes compression gloves in several sizes which have been very helpful for patients who do not tolerate having their hands bandaged, or who need more mobility and less bulk. In these cases, we have the patient don the glove and bandage from the wrist up. You can get these gloves with or without the buckwheat hulls on the back of the hand. If you have stubborn edema in this area, you might want to give them a try. These packs are great with bandaging but also are small enough to fit into most compression garments. Please talk with your therapist prior to using these. Another trick that I have used if edema persists on the top of the hand between the fingers, is to trace the patient s hand on Komprex. I then cut the Komprex so that there are little fingers of the padding that fit between the patient s fingers. Then you wrap the hand and fingers with gauze, making sure that these little fingers of padding fit between the patient s fingers and the gauze. This applies pressure to the back of the hand and also in the web spaces between the fingers. OPTIFLOW PADS These are convoluted foam pads covered with a soft, washable fabric that provide high/low pressure to stubborn areas of edema and fibrosis (areas of hard tissue). They are especially helpful when placed over large lipomas (fatty tumors, lumps) that appear on the inside of the thigh just above the knee. Because these pads are larger and thicker, I tend to use them in larger areas like the thigh or upper arm. They come in many shapes and sizes and are remarkably effective. I use a U- shaped one just under the lipoma, to prevent the lipoma from sagging down and causing pressure skin to skin. These also are effective on those frequently seen pouches of edema that form below the armpit and, in mastectomy cases, beside the area where the breast was removed. A well fitting bra may do the trick, but if not, place an Optiflow Pad under the bra and directly over the edematous area. Some patients also wear these under leotards for compression and report great success. This also works for edema pouches that many women develop after reconstructive surgery. CHIPPED FOAM PACKS These packs are easily made by cutting up foam into cubes. Tubular gauze is cut to the length you need and one end is closed with tape, or sewn. The cube foam is then placed in the gauze and the other end is closed. These work best if you use several different densities of foam. They are also very effective in the thigh area if covered with pads cut from sheets of Komprex. These pads will need to be larger at the top than at the bottom to conform to the shape of your leg and fit together like a puzzle. Round off the corners of these pads when you cut them and bevel the edges. When cut correctly, they will cover the entire thigh, with a pad for front, back, and one for each side of the limb. This also keeps bandages from rolling down from the top. CIRCAID OTHER HELPFUL PRODUCTS I use this product for the lower leg and foot when the lymphedema is due to poor circulation in that area (venous insufficiency). It has an elastic foot wrap and the leg wrap is a series of Velcro straps which wrap around the leg and interlock. This provides rigid compression to the lower leg and causes the calf muscle to actually work as a pump, moving the fluid out of the lower leg. In fact, the more you use your calf muscle 3

4 (walk, point your toes, etc.), the more reduction is obtained. During the daytime, you will usually need to tighten the straps as the edema reduces. These are not indicated for night time use. I have had excellent results with this product treating venous insufficiency, wounds, lymphedema limited to the lower leg, and for people who do not tolerate stockings or have difficulty donning compression stockings. I have found that men usually comply with wearing CircAids when they will not wear stockings. If you need compression over the thigh area and are able to don compression garments, then you can wear thigh-high or pantyhose compression garments with the CircAid over them. Helpful Hints for the CircAid 1) If your straps work themselves loose during the day, that is good news! It means that it is working and your edema is decreasing. Just tighten the straps each time you notice that they have become loose. 2) If you have a problem with the Velcro sticking to your clothes or each other, purchase an extra pair of socks and wear them on the outside of the CircAid to prevent this from happening. 3) If your legs have reduced to the point that the straps are too long to provide adequate pressure, talk to your fitter. The straps can be altered to a smaller fit. 4) Because CircAids are non-elastic, they do not have to be replaced at a specified time. The average lifespan is around 18 months for this product. But if they are still effective, there is no need to replace them. PUMPS I know that you have heard and read detailed horror stories regarding lymphedema and pumps. Most of them are true. The problem is that most often these are people who had no MLD/CDP prior to using the pump, who were supplied with pumps that were not appropriate for them, and the pumps were set on a pressure that was much too high. Also, some pump suppliers will instruct the patient to sleep all night in the pump or to wear it for three days continuously. I assure you that by using the pump in this way, many horror stories will continue to be told. There are three types of pumps: Pneumatic compressor, nonsequential home model These pumps have compressors with only a single outflow port, producing one pressure that is then transmitted by connected tubing to a sleeve (appliance) which wraps around the affected limb. It exerts a single pressure over the entire limb like a giant blood pressure cuff. This is NOT an acceptable pump for lymphedema treatment. Pneumatic compressor, sequential home model These pumps have multiple chambers (usually 3-6) that deliver the same level of pressure, but at different times. This pump also uses high levels of pressure with very long cycle times (up to 3 minutes) which is like having a blood pressure cuff on your arm or leg blown up and left for that length of time. This is the pump that Medicare provides. Pneumatic compressor, segmental home model with calibrated gradient pressure These pumps usually have 8-12 chambers, however, some still have only three. These too can be very harmful due to high pressure settings and long cycle times. LYMPHAPRESS 201M This pump has 12 chambers that are overlapping. BioCompression has also redesigned their pump to provide eight (8) chambers and a 30-second cycle time, and is incorporating the OptiFlow SC (see description below) right into the pump sleeve. Unlike MLD, the compression starts at the hand or foot and then the chambers gradually fill in an upward direction. The purpose of using a pump is to continue moving fluid through the collateral pathways that have formed after MLD treatment, in order to keep them open. These pumps should be used for 1-1½ hours daily and at the lowest effective pressure (40-60 mm/hg). Make sure that if a pump is recommended for you, that the provider of that pump knows about and understands lymphedema, and provides you with complete instructions on the pumps proper use and care. It is not acceptable to have an equipment company drop a pump off at your doorstep without showing you how to use it. If this occurs, do not accept it and notify your insurance company of this practice. Not everyone needs a pump. The factors that I look at when deciding whether to recommend a pump for a patient include: 1) response to MLD/CDT; 2) multiple exacerbations when the patient is compliant with self-care; 3) what their daily activities are, including the type of work they do; 4) venous insufficiency; 5) wounds or a history of wounds due to venous insufficiency and/or lymphedema. A pump is very desirable if lymphedema is due to venous insufficiency. Clinical studies have shown that using a pump increases venous return and aids in wound healing. The combination of MLD/ CDT, the Lymphapress 201M, and the CircAid has proven to be extremely successful in treating venous stasis ulcers at our center. OPTIFLOW SC This is a garment that is custom-fitted to each patient and is worn under the pump sleeve. We have had such success with this product when used with the Lymphapress that we no longer recommend that a patient use a pump without the Optiflow SC. The convoluted foam makes the pump more efficient in increasing lymphatic and venous flow, and prevents pooling and fibrosis, the number one complaint about pumps. OTHER HELPFUL TIPS HARD TO REACH AREAS If you tend to have edema in your back and/or buttocks, I recommend sleeping on an egg-crate mattress pad. The best ones must be purchased from a medical supply company or store. They should be at least 4 thick and instead of the rounded high/low areas, the protruding foam should be shaped more like spikes. This causes different levels of pressure against your skin which stimulates the lymph flow. Some patients have reported using different types of massage pads in hard to reach areas. You do no want to use 4

5 heated massage pads nor a hand held massage unit. Dr. Scholl makes a massage pad that covers the neck, shoulders, and back and is held in place with Velcro straps. This can also be wrapped around the arm or leg. The patients who have tried this have reported noticeable reduction in their edema. Jovi also makes several different items for use in hard-to-reach areas such as the head and neck, etc. HYDRATION As you know, the fluid that causes your lymphedema is a high-protein fluid that can easily grow bacteria. By drinking 8-12 (8 oz.) glasses of water daily, you can remain hydrated and dilute the toxins that accumulate in your system. Avoid caffeine and carbonated beverages as much as possible. If you have to have them, drink the same amount of water as you drink of these beverages (in addition to the 8-12 glasses daily). Water is your best friend, so keep it with you at all times. If your tap water is disgusting, filter it, buy bottled water, or flavor it with products such as Crystal Light or Kool-Aid. If you do not dink enough water on a daily basis, you will not feel as well as you could, nor achieve/maintain optimal edema reduction. Some physicians still prescribe diuretics for lymphedema. Diuretics remove water from your system and since your edema is not caused by water retention, they are usually not effective. They also tend to make the lymphedema worse if used for any length of time. If you have lymphedema and take diuretics due to other health problems, then you must take them. Do not restrict your fluid intake unless your doctor has instructed you, due to other health problems. DIET A high fiber diet, along with good hydration, can remove toxins from your system that build up due to lymphedema. Keep your daily fat calories down to 20% of you daily caloric intake. My patients who have cut back on dairy products also seem to have better success with their lymphedema. Take a daily multiple vitamin such as Centrum to help support your immune system. Vitamin E is the only vitamin of which we cannot get an adequate amount from our diet. A daily supplement of 500 I.U. is recommended, especially if you have wounds. The most important factor is to eat a well-balanced diet. This is imperative for good general health and good skin integrity. Good nutrition is not based on your weight. Many obese people are malnourished due to their poor diets. If you can, make an appointment with a registered dietician to learn what makes a healthy diet for you and also what your daily caloric intake should be. GENITAL LYMPHEDEMA I have not seen any severe problems with my patients who have genital edema. This is fairly amazing since 90%+ of my practice is treating lower extremity lymphedema. The key to avoiding genital edema is treating the abdominal and inguinal areas during MLD/CDT. If a patient is going to use a pump, they must be taught self- MLD to be done before, during and after the use of the pump. Deep abdominal breathing also activates the lymphatic system and helps drain the abdomen and genitalia. Jovi makes pressure pads that can be worn inside undergarments to help prevent and reduce genital edema. CONCLUSION One of my patients gave me a plaque for my treatment room that states: Courage doesn t always roar. Sometimes courage is the quiet voice at the end of the day saying, I will try again tomorrow. He stated that this is what he had learned during his lymphedema treatment. It takes enormous courage to live successfully with lymphedema! The saying laughter is the best medicine is true. A good belly laugh stimulates your lymph flow and immune system and decreases stress. Don t neglect the joy that is in your life by choosing to dwell on the negative. Take time every day to read something funny or talk to a friend who makes you laugh. Look at and smell the flowers. You will feel better and improve your health! Websites for products mentioned in this article: Other products and companies can be found in LymphLink, the NLN newsletter, and at Susie Wills is a registered nurse and Dr. Voddertrained, LANA-certified lymphedema therapist. She is the Director of Clinical Services for Healthtronix Lymphedema Management, Inc., in Plano, TX, and an NLN Medical Consultant. You can contact her at susie@healthtronix.com. Cherie L. Hoskins, CCT, is President/Owner of Healthtronix Lymphedema Management, Inc. 5