Q: Please give me some guidelines on how long we can use compression bandages before replacing. Also, how should they be washed?
A: Your therapist probably has specific instructions for you, but here are some general guidelines that I follow. After compression bandages have been worn, they become wrinkled and over stretched with each wearing. If they are not washed before the next application, the edges may be stretched unevenly, which would result in uneven pressure on your limb as you apply them. Washing bandages after each use restores elasticity and removes wrinkles, thereby assuring a smoother application the next time they are used.
Also, if you exercise effectively while wearing them, they become damp with perspiration; regular washing maintains the bandages and supports good personal hygiene.
The life span of compression bandages depends on many factors, including how tightly they are pulled during the wrapping process, how large and fibrotic a limb they are holding/reshaping, and how carefully they are laundered (warm water, mild soap such as Ivory Snow or Dreft, gentle cycle, gentle reshaping/ wrinkle removal, air drying, careful re-rolling). For example, a young patient of mine bandages his leg nightly, rotating two sets of bandages, and replaces them every 3-4 months.
Q: Please advise why lymphedema patients are not covered by private insurance or HMO's for compression sleeves and proper therapy. Why isn't the public made aware of this terrible condition?
I was just diagnosed last year after 35 years and it is confining, frustrating and embarrassing. I am a Medicare patient and have no money to pay for the sleeve. My arm is getting bigger. Please help!
A: Take heart! There is successful treatment for lymphedema that is reimbursed by a growing number of HMO's and private insurance companies (Complete Decongestive Therapy). In the past, medical management of the lymphedema patient has, admittedly, been less than adequate. That is changing, thanks to the advocacy of the NLN and patients just like you who have not taken "no" for an answer. Lymphedema awareness is increasing steadily, but your legislators need to hear from you. Insurance companies need to have clear, concise documentation of your condition and how it affects you functionally. A detailed evaluation by a physician/therapist trained in lymphedema treatment can help to support your claim as "medically necessary." Documentation of loss of strength, range of motion, limits in the ability to perform daily activities, pain, emotional distress - all these factors can help to support your appeal for coverage of lymphedema treatment (see Letters to the Editor in this issue for one patient's story).
Medicare does not pay for compression garments, as a rule, but I have had patients who have appealed several times and received reimbursement on an individual basis; one pursued the appeal all the way to a fair hearing with an administrative law judge. As soon as the judge saw the patient and read her documentation, she approved coverage of the compression garments.
One shouldn't have to go to such lengths to obtain reimbursement of what we know is a necessity. However, until more individuals with lymphedema speak to their elected officials who make the policies in Washington DC, things will move slowly, if at all. Each of us can make a difference by writing a letter or making a phone call. Private insurance companies vary in their policies; many will only reimburse therapy supervised by a physician and performed by a specific type of therapist, with specific training in lymphedema therapy.
As for compression garments, there are a great variety of products available with a tremendous variation in pricing.
I have heard of instances where an inexpensive, ready-made sleeve has been priced at four times the cost of a custom sleeve. You need to be an educated consumer and make calls to several vendors to compare prices. Keep in mind that measuring and fitting a compression garment takes skill and time and that is often figured into the total price of the garment. Your best shot is to develop a relationship with a trained lymphedema therapist (currently there are no standards for lymphedema treatment or training in the U.S., but we are working to change this in the near future). He or she will be able to advise you on the best garment choice for your particular case. The garment must be fitted to the patient, not the patient to the garment, which is often the case. A colleague of mine recently commented to me that a compression garment is not an article of clothing, but a prosthetic device which replaces the pressure lost by missing or damaged lymphatics, helping to maintain fluid balance in a limb. Taking this into consideration makes the relatively high price of a compression garment a bit more understandable.
Q: I am 21 years old and have had primary lymphedema in my right leg since my teens. I was treated and educated in self-care (MLD, bandaging, exercise), but I am very concerned since my toes look like sausages, my feet barely fit into my shoes now. Not only does it hurt physically, but I'm very embarrassed, as well. Any suggestions how to treat the toes and how to take care of my very swollen foot? Also, what type of shoes should I wear?
A: First, it sounds like you are having an increase in swelling in your affected leg/foot. You should consult your physician/therapist and make sure that you do not have a chronic infection that is causing the pain and swelling. If that is ruled out, perhaps your compression garment is not adequate in fit or compression level. Check that out with your lymphedema therapist. The best shoes for someone with significant swelling in the foot and toes are wide width, high toe-box shoes that lace up, rather than a slip-on style. Also, you can contact the NLN for more information about an organization called One Shoe Crew for people with different sized/width feet who only need one shoe in each size/width. You should not have to live with the discomfort you are experiencing. Perhaps your therapist can recommend further treatment or a change in your self-care program. Some of my patients bandage their toes and then don their compression stockings.
There are "toe gloves" available from compression garment manufacturers, but they must be fitted carefully to avoid irritation or skin breakdown between the toes. Elvarex (Beiersdorf) makes a good custom toe glove that fits individually over all the toes except the little toe.
This is a separate piece that is applied before the open toe compression stocking is applied. Many patients find great relief and good control of swelling with this option. Hopefully, some of the above suggestions will help you find some relief.
Q: I have looked in your Newsletter for nutritional guidelines that might improve my lymphedema in my legs. Is there a specific diet for people who have primary lymphedema? I have several members of my family who have swollen limbs and we would be very grateful for any suggestions you might have.
A:Lymphedema is a high-protein edema. One function of the lymphatic system is to remove proteins from the tissue spaces so that a proper balance of protein and water remains in the tissues. When the lymphatic system is impaired, high concentrations of protein collect in the tissue spaces. This has nothing to do with the amount of protein ingested in your diet. Of course, a well-balanced diet with adequate protein, complex carbohydrates from fresh fruits and vegetables, and some fat (ideally, not saturated) makes good sense for everyone. Eating a diet low in salt will not reduce lymphedema, but if you are sensitive to excess sodium and notice a worsening of your lymphedema after an especially salty meal, then you should try to limit your salt intake. Processed foods are loaded with sodium preservatives, even though they may not taste salty. Fresh is best! There is a small percentage of people with primary lymphedema who have a condition called protein-losing enteropathy, or chylous reflux. These people benefit greatly from a special diet regimen of specific fatty acids that aid in their digestion and reduce the leakage of high protein fluid from their intestines. This condition needs to be evaluated by a Lymphologist, a physician who specializes in the diagnosis and treatment of lymphedema. Maintaining an ideal body weight is important in the maintenance of lymphedema, as well. Excess body fat not only adds more tissue that needs to be drained by an already limited system, but also causes pressure on the regional lymph node areas, further limiting the flow of lymph through those sites.
Please address questions to: Editor c/o NLN, 116 New Montgomery Street, Suite 235, San Francisco, CA 94105 or e-mail: email@example.com. Deadline for submissions is 15th of the month, two months prior to publication.