Wednesday, January 31, 2007
Lymphedema and Lipedema
Plast Reconstr Surg. 2007 Jan;119(1):9e-15e
Harvard Medical School, Boston, MA, USA.
LEARNING OBJECTIVES: After studying this article, the participant should be able to: 1. Discuss the initial evaluation of a patient presenting with lower extremity enlargement. 2. Distinguish underlying medical conditions causing lower extremity enlargement, including lymphedema and lipedema. 3. Discuss appropriate management and treatment for patients presenting with these conditions.
BACKGROUND: Given the epidemic of obesity in the United States, many patients will consult the plastic surgeon with complaints of lower extremity enlargement secondary to "fat legs." In addition to cosmetic disfigurement, some patients may suffer from underlying medical conditions that are responsible for their symptoms. Knowledge of these other causes, including lymphedema and a disorder of abnormal fat deposition known as lipedema, ensures appropriate management and/or surgical treatment for affected patients.
METHODS: Initial evaluation for lower extremity enlargement should include a discussion of pertinent medical history and a focused physical examination for findings that might indicate a pathologic underlying cause. When indicated, patients should undergo additional testing, including radiologic studies, to confirm their diagnoses.
RESULTS: For those patients found to have lymphatic dysfunction, conservative management, such as massage therapy, use of compression garments, and limb elevation, should be initially recommended. Excisional or suction-assisted lipectomy may be considered in patients who fail conservative therapy. More extensive consultation with the plastic surgeon is recommended for patients seeking aesthetic improvement in contour and shape of large legs without a specified underlying abnormality.
CONCLUSIONS: Patients with lower extremity enlargement may present to the plastic surgeon unsure of the specific cause of their deformity. A broad differential diagnosis exists for their presentation, which can be narrowed by using the common features and unique manifestations of the conditions.
Lippincott, Williams & Wilkins
Friday, January 26, 2007
There are a lot of fears that overwhelm us when we learn we have cancer or if we are diagnosed with lymphedema.
The fears have to be dealt with, they must be faced and overcome. If they are not, life will become an unbearable experience of suffering innerwardly as well as outwardly.
I found this article and wanted to share it:
Fear is a universal emotion, if not a primal instinct. Each of us has felt it - recoiling from a sudden burst of flame or a snarling dog, for instance, or grasping at a railing and backing away from a sudden drop-off. But there's another type of fear: the fear that comes with serious illness and the prospect of death. This fear has less to do with self-preservation. It is fear of an uncertain future, fear of change, and perhaps most importantly, fear of facing one's life squarely and coming up empty-handed.
When Matt, a 22-year-old I knew, was stricken by a malignant lymphoma a few years ago, we talked about this fear, and those conversations have stayed with me ever since. Like most patients who have just been diagnosed with a serious illness, Matt was primarily concerned with his physical condition, at least at first, and peppered his doctors with all sorts of questions. What was the cause of the lymphoma? How effective was the treatment supposed to be? What were his chances of survival? What did this or that medical term mean? Within a few days, however, his overriding concern had changed to his spiritual state. It was as if he sensed that his life had taken an irreversible turn and that no matter what the outcome, he needed to set it in order.
Matt changed greatly over the following months. At the time he was diagnosed, he was a brash and often loud-mouthed joker; happy-go-lucky on the surface, but privately terrified. Six short months later, however, he was a different person. True, he never lost his silly streak, and was still scared at times, even near the end. But having gone through days and nights of the most excruciating pain, he had developed a new, deeper side. And having stopped looking for an escape from the hard fact that he was dying, he had come to terms with the thought, and faced it head on. In doing so, he found strength to meet the agonies of death calmly.
Not everyone dies peacefully, and it's not just a matter of emotional make-up or personality. Peace cannot be found solely by "working through" one's feelings on a personal level. After all, we are never alone, but are surrounded at all times by the cosmic forces of evil and good. And though the battle between them is played out in many arenas, I believe it is most intense wherever the soul of a dying person hangs in the balance.
Dorie, a close friend of my mother's who felt continually tormented by this conflict, lived with it not only at the end of her life, but for decades. Dorie lived next door to our family for many years, first as a part of my parents' household and, after their deaths, as part of my own.
The Dorie most people knew was a happy person who found great joy in helping others. When a baby was born, she was the first to arrive with fruit, flowers, and an offer to clean the house. It was the same when guests were expected. Nothing satisfied her as much as making sure the extra room was dusted and the bed freshly made. She was endlessly cheerful, it seemed, and willing to do the most mundane chore. She never expected or wanted thanks.
Underneath, however, Dorie was a nervous, anxious person. She had trouble sleeping at night and always wanted to have someone nearby. She worried over every symptom of aging and dreaded the prospect of physical ailments or disabilities. By fifty she was already worrying about dying. Thankfully, her determination to be of use to other people and brighten their day kept her afloat - and prevented the fears that plagued her from driving her to the brink.
Then cancer struck. Initially Dorie underwent several rounds of chemotherapy, and enjoyed several cancer-free years. Then came a relapse. This time the cancer grew rapidly, and we knew Dorie did not have long to live. She was in severe pain, and radiation provided only partial relief. Sitting with her and talking seemed to help more. With her, my wife and I sought for answers to her questions: What is death? Why do we have to die? Is there life after death? Together we read many passages from scripture about death and resurrection, searching for verses that would strengthen her. I reminded her that she had served God and those around her for decades, and said I felt sure he would reward her.
All the same, the last weeks of Dorie's life were an enormous struggle, both physically and spiritually. One sensed it was not just a matter of ordinary human anxiety, but a vital fight for her soul and spirit. She seemed besieged by dark powers. My wife and daughters nursed her for days on end and accompanied her through long hours of inner torment. Once she cried out that something evil had entered her room. With what little strength she had, she threw a pillow at it, shouting, "Go away, darkness! Go away!" At such times those of us with her would gather around her bed and turn to God in song or in prayer. Dorie loved the Lord's Prayer very much; it was always an encouragement to her.
One morning, after a particularly restless night, Dorie's fear was suddenly gone, and she said, "I want to depend on God alone." She was full of joy and anticipation of that great moment when God would take her, and felt it would be very soon. She said, "There's a surprise today: the kingdom's coming! When it comes, I will run downstairs and outside to welcome it!" That same afternoon she exclaimed, "All my pain is gone. I feel so much better! Thank you, thank you, God!" A little later she said with a smile, "God will call me home tonight."
In the evening, she called my family - her adoptive family - together and hugged each one of us in farewell. We sang and prayed by her bed, and she remained peaceful through the night. She slipped away from us for good as dawn was breaking.
Having fought as long and hard as she did, Dorie's departure was nothing less than a victory. She knew what it was like to be gripped by cold fear, but she clung to her belief in a God who was greater than her anxieties and never let them completely overwhelm her. And as she breathed her last, she did so with the calmness of those who have come to realize, as the first Christian believers expressed it, that the world is merely a bridge between earthly and eternal life: "Cross over it, but do not build your house on it."
You may reprint this article free of charge providing you use the following credit box:
Article by Johann Christoph Arnold
Thursday, January 25, 2007
Breast cancer-related lymphedema - what are the significant predictors and how they affect the severity of lymphedema?
Samuel Wieand H,
Magee-Womens Hospital, Pittsburgh, Pennsylvania, USA.
According to the American Cancer Society, there are currently 2 million breast cancer (BC) survivors in the USA and 20% of them cope with lymphedema (LE). The primary aim of this study was to determine the predictive factors of BC-related LE. The secondary aim was to investigate the impact of predictors on the severity of LE. The study design was intended to be a 1:2 matched case-control study. Instead, we stratified on age (+/-10 years), radiation therapy (y/n), and type of operation (SM/MRM/MRM with tram). Patients who underwent BC surgery between 1990 and 2000 at UPMC Magee-Womens Hospital were reviewed for LE. Data were collected on 52 women with LE and 104 female controls. Logistic regression was utilized to assess the relationship between risk factors and LE.
Ordinal logistic regression was performed to determine the association between risk factors and severity of LE. Severity was defined according to the volume difference between affected and unaffected limbs. Risk factors considered were occupation/hobby (hand use), TNM stage, number of dissected nodes, number of positive nodes, tumor size, infection, allergy, diabetes mellitus, hypertension, hypothyroidism, chronic obstructive pulmonary disease, and body mass index (BMI). LE was mild in 43 patients and was moderate/severe in nine patients. The level of hand use in the control group was categorized as low in 56 (54%), medium in 15 (14%), and high in 33 (32%) patients.
The corresponding frequencies were 14 (33%), 6 (14%) and 23 (53%) for patients with mild LE and 3 (33%), 1 (11%), 5 (56%) for patients with moderate/severe LE (p <>
PMID: 17238983 [PubMed - in process]
Monday, January 22, 2007
Sunday, January 21, 2007
Nine Ways to Maximize Your Misery: The Don’ts of Chronic Illness (and How to Avoid Them)
The chronically ill can make themselves unnecessarily miserable, and in this article I’m going to tell you how. You will see the traps that the chronically ill can fall into, and by consciously avoiding them, you will be able to decrease your suffering dramatically. Below is a short course on what NOT TO DO:
1. Be critical of yourself for having your illness, and for not being able to do those things in just the way you did them before. This is an effective misery maximizer because it builds on the sadness and anger you may already feel about having your disease.
If you want to maximize your happiness instead of your misery, here’s a little exercise that will help. First, get a paper and pen and make a list of the negative or self-critical things you’ve said or thought in the last 24 hours. Whether it’s “I’ll never feel well again,” or “these people don’t care if I live or die,” write them all down. Next, pretend that a very close friend who has the same chronic illness you do and is suffering the same way you are is the one who said or thought those things you’ve written down. Now, for each item, ask yourself what you might say to him or her.
My guess is that you’ve come up with specific ideas for your friend on how to be kinder, gentler, and more forgiving to him/herself. You might even have wanted to tell your friend how much you admire the ways he meets the challenges of living and dealing with chronic illness. What advice would you give your friend when s/he begins to feel so low, and so self-critical? What are the remarkable ways in which your friend manages his/her illness? Finally, be your own good friend, and say these things to yourself.
2. Find as many ways as you can to relinquish the control you have over your illness and your life. This is an especially useful misery maximizer for the chronically ill. Their illnesses almost always result in a loss of control over parts of themselves and their lives.
Retaining a sense of that control is one of the essential ingredients of emotional well being. A well-known study of people in convalescent hospitals by Drs. Ellen Langer and Judith Rodin demonstrated that relatively small differences in control--such as what kind of houseplant to have and which night to watch a movie--made a dramatic difference to the happiness, alertness, and longevity. The study can be usefully applied to the chronically ill. It shows how much difference each small increment in control can make to an overall sense of well-being. Fortunately, there are opportunities for gaining more control in our lives if we can only become aware of them. Another exercise will help: First, make a list of 10 decisions you make every day. (Write down more if you like, so that you can see how much control you do have.) Second, armed with that list as a good beginning, begin to add one or two new decisions each day. Whether it’s choosing something simple like what to wear, or something weighty like which physician to see, the more control we are able to exercise in our lives the happier and emotionally healthier we’ll become.
3. Don’t let yourself feel or express gratitude to anyone for anything. A recent study by Dr. Robert Emmons at the University of California, Davis showed that gratitude improves emotional and physical health. So to maximize our happiness instead of our misery, expressing gratitude for the things and the people in our lives can really help.
One short exercise is to write down ten (or more) things for which you feel grateful. Maybe they include a comfortable bed and a good night’s sleep, or maybe a cloudless blue sky, or eggs cooked the way you like them. People can go on your list too.
The next step is to express gratitude for each item--whether that means a silent “thank you” inside your head--or gratitude expressed out loud to another. Saying “thanks” keeps us human, and helps keep us happy and healthy.
4. Don't have a sense of humor. This is another effective misery maximizer. A sense of humor and an appreciation for the absurdities of the human condition aren’t just things to possess; they are resources to use. In this case the admonition to “use it or lose it” is absolutely true, especially with a chronic illness.
Take out that pen and paper once more for another exercise: Write down ten things about life with your illness that a kind-hearted comedian could make something of. If you twist it just a little, even your adversity has a comic aspect to it. Once you find it, use it to make yourself feel better, and manage that next challenge with a lighter approach.
For an example, consider the adversity that Captain Al Haynes, pilot of United Airlines Flight 232, faced. His plane was carrying 285 passengers when an engine came apart and disabled all three hydraulic systems, rendering the plane virtually uncontrollable. By heroic aeronautical skills the crew was able to erratically weave to the Sioux City, Iowa airport to attempt an emergency landing. The tower controller told Captain Haynes he was cleared to land on any runway. Haynes response was, “Oh, you want to be particular and make it a runway?”
Do your health a big favor, and…lighten up.
5. Don't take time for yourself. It’s easy to see how following this dictum is good for maximizing misery. In our culture, women, and especially mothers, have a head start in using this misery-making suggestion. They learn that everyone else comes first.
While it’s easy to see that following this dictum is good for maximizing misery, what’s often hard to see is the possibility of finding a way out, without being punished by others, or feeling guilty yourself. Take out that paper and pen again: Write down 10 small things that you could do for yourself that make you feel better. Now, we’re not talking trips to Italy here, or major life changes, so keep it small. You want those things to be easily done without a lot of fuss. Armed with your list, you can proceed to the next step: DO ONE SMALL THING A DAY TO MAKE YOURSELF FEEL BETTER.
6. Don't take responsibility for your medical care. Obviously if you don’t get good medical care you’re going to be sicker and more miserable than if you do. What’s not so obvious is how many things you can do to greatly increase the quality of the care you receive.
Our culture has traditionally held doctors in high esteem, even awe. For many people this view has obscured the fact that the usual customer satisfaction rules apply to doctors just as they do to other service providers. For example, we demand a certain level of both courtesy and competence from our mechanic, and if we don’t get it we find another. I’m not suggesting that we change doctors the first time we don’t like what they tell us, but as consumers we need to remember that we always have the right to find someone who will serve us better.
The other thing we can do to get better medical care is find out as much as we can about our disease, treatments for it, and the latest research on it. The internet is an extremely powerful tool that can help us do this, and I’m sure many of you have made good use of it. For those of you who haven’t, I strongly encourage you to do so. The links on the www.chronicillnesscoach.com web site are a great place to start.
7. Dwell on your illness day and night. If you’re chronically ill, this is one of the easiest ways to get seduced into misery. When you’re sick all the time, it’s hard not to think about your illness all the time. Setting yourself free from a preoccupation with illness is sometimes tough.
One method that can help comes from a modified Vipassana meditation technique: Uncap that pen, and list the recurring thoughts you have about your illness. Whether they’re thoughts of feeling sorry for yourself, thoughts that you’re no longer attractive, thoughts of being afraid about the future; whatever they are, write them down.
The next step is simple: every time you have one of those thoughts, just count it by making a tick mark next to it on your list. You get to decide for how long to keep counting the thoughts. I suggest 24 hours.
This technique does two valuable things. First, it lessens the negative effects of the thoughts because it helps you step back from the emotion associated with them. Second, it allows you to let go of those negative emotions. Over time what usually happens from this simple act of counting those thoughts is that they and their corresponding emotions come up much less frequently, and you find yourself feeling freer. SO START COUNTING!
8. Isolate yourself. This is an especially good misery maximizer for several reasons. Isolating yourself makes it much easier to forget that no matter how serious your disease is, no matter how bad your symptoms are, there are always people who have it much worse. While knowing that won’t make your illness better, it will help put it in perspective.
9. Don't imagine a future beyond your illness. In order to have meaning, life has to be about more than just our immediate concerns. This may seem obvious when we feel well and happy and able to look forward to something, but when we are ill, life narrows, and our vision grows weak and myopic. Just when we need the future most, we tend to abandon it – and all the hope and excitement that can go with it.
Here is a final exercise to stop the tendency we have to narrow hopes and dreams: Write down ten (or more) things that you can look forward to doing in the future. They can be little things like a phone call to relatives, a planned outing, or that warm bath you’ve been wanting all day. They can also be bigger things such as activities that contribute to people and causes that are important to you--maybe cleaning up the environment, teaching reading to illiterate adults, or even taking part in finding a cure for your own illness. After you’ve made the list, read it. Think about those things that you are looking forward to and remind yourself that you could make a list of those big or little things every day. And maybe that’s the thing to do for a week or so until you get the knack of looking forward. After all, futures are made; they don’t just happen.
While you’ve still got that list, you may want to think about writing down activities that contribute to people and causes that are important to you. You may feel strongly about cleaning up the environment, teaching reading to illiterate adults, or even taking part in finding a cure for your own illness. People who are able to do these kinds of things are making not just their own futures, but their communities’ as well.
You’ve now learned several exercises that can improve the quality of your life. These exercises are only one of the ways that you can overcome some of the debilitating effects of chronic illness, and stop cold that misery maximizing. And that’s the secret, isn’t it: To rob the illness of its power to shape your life. Only you should have that power, and you can.
The internet can be a great help in preventing isolation and getting emotional support. For example, the firstname.lastname@example.org or at 408-398-9422 or visit his website at Chronic Illness Website
Saturday, January 13, 2007
While the doctor has said there may be only a 50-50 chance of success due to the lymphedema, I feel it is a chance I must take. Each month now, it seems that right lung fills up with a couple liters of fluid. There are only so many times that you can drain a lung before complications set in.
Thursday, January 11, 2007
The goal of compression wrapping is to build a "custom fitted" compression garment for the affected limb(s), applied daily by patient and caregiver, which will help to massage the fluid out of the affected area during normal movement and keep out the additional fluid. The wrapped limb should look uniform and smooth ll the way up with few bulges and hollows as possible.
1.) Assemble all material in area you will be using to wrap
2.) Be comfortable. Sit or lie while wrapping foot.
3.) Stockinette goes on first.
4.) The gauze (Elastomull) toe/foot wrap goes on second
a. The first round is an "anchoring" wrap. Start with the tail under the roll, laying the tail on the top of the foot and bringing the roll completely around the arch back to the top of the foot to catch the end. Then go back around the foot again back to your starting point. b. Bring the gauze up to the tip of the first toe. The first round on the toe angles up close to but not over the tip. Wrap each toe until covered, 1-4 rounds, spiraling down toward foot. Do not allow to bunch behind the toes. Do not pull tight. c. Anchor around foot after each toe is covered. Coming off the back of the toe, bring the gauze around sole to the top of the foot and proceed to the top of the next toe. d. Finish remaining toes in same manner. Wind left over gauze around foot loosely, spiraling toward ankle.
5. If used, apply white fluffy padding (Artiflex) now. Wrap entire leg, putting several layers around knee. Cover heel well also.
6. If used, foam pad goes on top of the foot so the edge rests at the base of the toes. You might have enough gauze left from wrapping toes to secure the foam piece.
7. If used, place foam pads over ankle bones. Padding might also be recommended over the front of the ankle. This fills in the hollows. Wrap over foam.
8. Place the additional pieces of foam, chip bags, or other padding where they have been determined to be the most effective. Vary the formula for filling in spaces.
9. Brown (Comprilan) bandaging goes on last. Do not wrap toes. Start with an 8cm wrap on the foot at the base of the toes. Toes should be pointing up, foot pulled toward body (flexed).
10. You will probably use 2 of the 8cm rolls on the foot and ankle. Roll around the foot once or twice, then roll around the ankle, around the foot angling up and down to form the herringbone pattern. Continue until you have covered foot and ankle. Keep loose, especially across front of ankle.
11. After the ankle roll, start with 1-3 rolls of 10 cm bandage. This should cover upto or just over the knee. Continue up the thigh with 2-6 (or more for very large areas) rolls of 12cm bandage. Remember to pad behind the knee.
12. If slipping down of bandages is a problem, especially in the thigh area, a roll of white bandage (Isoband) can be spiraled around the limb, like a foundation, to which the brown bandages can cling.
13. You may tape ends of bandages to secure. As you become more experienced, you may be able to use less tape. Tape only to the brown bandages.
14. Alternate the direction of each wrap as you add it.
15. Bandage Knee
a. On the lower leg, complete the bandage to just below the knee. b. The next bandage, roll one time around the lower leg just below the knee c. Complete the circle around the thigh, above the knee d. Bring the bandage down at an angle across the patella (Knee cap) to below the knee e. Circle the lower leg completely, returning to the front of the leg. Angle the bandage up across the patella (knee cap) f. Each bandage is about 1/2 inch lower than the previous pass on the thigh, and about 1/2 inch higher than the previous pass on the lower leg. g. Complete the instructions 3 through 7 until you have used up the bandage. One entire bandage is used to "cage" in the knee. h. Start the next bandage belowe the knee on the lower leg. Spiral up over the baandaged knee, this time widening your spacing to about 1".
16. Avoid wrinkles, bunching, gapping and loose ends in the wraps.
17. You may give small tugs as you bandage to keep the wraps firm. Do not pull the bandage roll as you may wrap too tight. Check the uniformity of the compression by plucking at the wraps and comparing the tension.
18. Wrap all the way to the groin, capturing the fluid at the top of the thigh as much as possible. Bandages are more likely to stay up if the leg is wrapped up to the junction between the leg and body.
19. Tape securely at the top and cover all with stretch fishnet (Tubigauze/Elastinet)
20. You should sleep in your wraps. Wear your wraps 22 hours per day, off only to bathe, lotion, dress and allow skin to "breath" for about 2 hours per day. After you ahve completed the intensive phase of therapy you may sleep in your wraps and wear a compression garment during the day.
**Special thanks to Healthsouth Lakeshore Rehabilitation Hospital - Birmingham, Alabama
Friday, January 05, 2007
After just having spent a couple weeks in an inpatient lymphedema treatment center, I had a few thoughts I wanted to share about what to look for and expect from such a facility.
1.) What is the training and certification of the lymphedema massage therapists? This includes where they received training, how they were certified, are they LANA certified and do they partipate in orgnizations like the National Lymphedema Network, where they are kept abreast of new developments and treatment modalities.
2.) Is the treatment supervised daily by an actual physcian or is it operated basically by a lymphedema therapist?
If you go to an inpatient though, the one thing I would do is to have the treatment plan given to you in writing and would insist it be followed to the T.
The Treatment should include:
(1) Being given complete CDT/MLD by the therapist
(2) Being taught how to do self CDT. Now your partner will need to learn this as well, because initially, it might be almost impossible at this point for you to do the leg massage yourself. You will need to consistently do this daily.
(3) Use of diuretucs. Even though the use of diuretics is basically opposed in the treatment of lymphedema, there may be times of urgency, when the fluid accumlation can be life threatening that diuretics may be needed. This has to be discussed with your lymphedema doctor to see if it is necessary and appropriate for you.
(4) Bandaging...both having it done by the therapist, and learning how to do it correctly yourself.
(5) Exercise....absolutely essential as it will not only help get the body strengthened, but exercise/movement facilitates lymph movement and flow.
(6) Water exercises...another excellent method of helping to clear the fluid out.....for me, it was "Mahvelous"...absolutely loved that part.
(7) Diet. Important to eat in a healthy manner to not only get the nutrients, but help maintain regular body weight. If you are overweight from bad dietary habits, you are seriously complicating your lymphedema and this issue simply has to be addressed and worked on.
(8) Examination. If your full body lymphedema is a sudden or "new" experience, I personally feel there should be investigations to see what might have triggered the incidence. Sometimes, such as in my case, there wasa disasterously low blood protein level which contributed to the cycle.
(9) For the leg lymphedema, the treatment should not include the use of these so-called lymphedema pumps. These cause further damage to the micro-lymphatics, contribute to increased fibrosis and can be responsibile for the development of genital lymphedema.
Special Consideration: If you are experiencing breathing difficulties, you need to have at least an xray to determine if there is a pleural effusion. If so, this needs to be drained and followed up on.
Finally, I would really suggest you write down, completely, your expectations of the treatments and promised results. Give a copy to your doctor and discuss it with them. Keep a copy for yourself.
Just a few thoughts, I wish I had thought of before my experience.
One more thing, seriously ask yourself and the lymphedema doctor if infact an inpatient stay is really what is needed - or canyour expectations and needs be met successfully in an outpatient setting.
Parent's Lymphedema Action Network
I just wanted to give you a quick heads up that the PLAN Educational Forum has been updated on our website PLAN
and that the next call is on:
Tuesday January 30, 2007. One of my favorite lymph doctors, Kathleen Francis is going to be the speaker.
January Topic: Lymphedema Research
Guest Speaker: Kathleen Francis, MD (bio)
Email Questions to: KFrancis@SBHCS.com (Subject: PLAN Forum Jan 07)
Conference Call: Tuesday, January 30, 2007 at 3:00 pm PST
Mark your calenders