Q: I discovered the National Lymphedema Network just a year ago (after having surgery 22 years ago and removal of lymph glands in my right groin) and am very pleased to find some resources after all this time!
I have a specific question for you, or any of your readers: I have developed, over the period of years of my secondary lymphedema, "growths" on and between the toes of my right foot that my doctor believes are a result of the lymphedema. (He had a term for the condition, and I don't remember it.) They are small, wart-like, tough, tend to spread, and - most irritatingly - ooze lymphatic serum when irritated or when my leg is unusually swollen (resulting in permanent stains, even THROUGH to the outside of the leather, on my shoes!). I combat them by using stypic powder, to "seal" the small pores that the serum oozes from, and covering with band-aids, to soak up the serum and protect the growths from further irritation.
I haven't seen any mention of this condition in your magazine, and wondered if anyone else experienced this, and had some solutions to combat it. (My doctor says removal of the growths is pointless; they will come back.) Thanks for any and all help you can give me!
A: The warty protrusions you speak of on your toes are common in Grade 2 lymphedema. Sometimes, they are called papules or papillomas, and they often leak lymphatic fluid. The most serious complication of this is increased risk of infection. If fluid can leak out, then bacteria can get into that opening and cause infection. I don't advise using stiptic powder to "seal" them. Cover with a band-aid and use an antibacterial ointment on the openings to help lower risk of infection.
These papules do sometimes respond to compression bandaging of the toes, at least to decrease their size and reduce the lymph leakage. This, however, would not be done in isolation from treatment of the whole extremity and adjacent trunk quadrants. Have you considered having an evaluation for decongestive therapy for your lymphedema? In addition to reducing the size of your involved limb and improving your lymphatic drainage, you would be taught self care, self lymph drainage massage, self compression bandaging techniques, and an individual exercise program to enhance the pumping of your lymph vessels in your involved leg/trunk. You should seriously consider this option, as you are at risk for infection, and those protrusions usually only get worse with time. Perhaps you could arrest their growth and even, reduce them somewhat with treatment.
The NLN has a resource guide, listing treatment centers and therapists state by state. Good luck to you.
Q: I had a mastectomy last April and the testing/removal of 4 lymph glands which were negative. Following the surgery I had swelling on my chest wall under my arm that the surgeon said was just body tissue and that it was the same as other side. I argued that it was not true but to no avail. It has been 13 months since the surgery and there is still swelling. In talking with a friend and physical therapist from Germany they felt it was lymph fluid. They suggested I look into lymphatic drainage therapy and therefore I am asking the question. Most of the articles I have read address the swelling in legs, feet, and arms; my lymphedema is not that serious, but I do not want it to worsen from lack of attention. The area is about the size of an orange/lemon and really bubbles out when I wear a bathing suit or tank-type top. Would I benefit from lymphatic drainage massage?
Thank you for your response to this question. I will be seeing my oncologist on May 20 and want to discuss my taking this therapy. Thanks to your resource network I have found 2 therapists in the Sarasota area who may be able to help.
A: You are right to be concerned and to try to help the situation however you can. It may be that some of the bulge you see and feel is extra tissue or skin that has now had a chance to fill in with fluid. These "pouches" can be very uncomfortable and displeasing to the individual cosmetically. If there is some lymphatic fluid trapped there, you can be taught by a lymphedema therapist how to perform some self-massage to try to move some of the fluid. Keep in mind, though, if there is a soft hollow area of tissue there, it may always fill with fluid. The type of bra you wear may be contributing to the problem as well. Consult with a lymphedema therapist who may advise you on the bra issue, as well as recommend some individual lymphedema treatment (maybe only a few sessions to see if the fluid can be moved) and instruction in self-massage for you. There are some individuals who have lymphedema of the breast or chest wall, without lymphedema of the arm. Sometimes that local degree of congestion can preceed lymphedema of the arm. You should be evaluated so that you can get baseline measurements to compare with months down the road, if there is a concern that lymphedema is developing in the arm as well.
Q: I had a severe head-on collision last year with a drunk driver, broke both femurs (which were pinned), shattered my right tibial plateau, fractured my right fibula, and broke my right ankle. I wore an external fixator for the tibial shatter for three months. The accident occurred in October, 1999. In January, 2000 I experienced a pinsight infection which festered into a wound on the front of my right leg (about mid tibia). This infection became abscessed. For fear of endangering the leg, my doctor debried the area by removing puss, tissue, muscle and some bone. The infection disappeared, but swelling in my right calf and ankle was very bad. Now, nine months later, swelling occurs to a lesser degree. In the mornings my leg/ankle are fine, but at the end of the day the swelling has returned making my right foot and toes feel kind of tingly.
Do you think compression socks or Coban wraps would help this or would this possibly cut off circulation? The blood flow to my right foot is good and the pulse there is always very strong but I believe the return path is inhibited. Any suggestions?
A: You may have had damage to your venous and lymphatic systems from the trauma and subsequent surgery to treat the infection. A compression stocking could be of help, but I do not suggest you trying to bandage your leg without some input from a physician/therapist familiar with proper technique.
In addition, you need to have a proper diagnosis of the cause of your swelling, venous or lymphatic, or a combination of both which is often the case. Care must be taken to have the appropriate level of compression and appropriate style of stocking, to help control the swelling, once an accurate diagnosis is made. You may benefit from some formal treatment for the swelling, particularly is there is a lymphatic component.
Consult with your surgeon who can refer you to a vascular specialist or someone experienced in lymphedema to evaluate your situation. Don't be tempted to "treat" yourself before you know the exact nature of your condition. The NLN has a resource guide which lists therapists/physicians/treatment centers state by state. Look for it on the website, www.lymphnet.org/findTreatment.htm.
Q: Recently I read an article in the NY Post about liposuction for lymphedema in the arm after Breast cancer surgery. As you can imagine, after living with this condition for many years, I was very excited, but not sure where to get further information. Is it true that liposuction can reverse and cure the swelling in my arm? Where can I go for surgery? My doctor was not able to help me. Anxious to hear from you, a long time NLN Member.
A: Liposuction is not a cure for lymphedema. At the present time, there is NO cure for lymphedema. The information you read about refers to a procedure done in Sweden by a Dr. Brorson. He presented this information at the NLN Conference in Orlando this year. He was clear throughout his presentation that he only performs this procedure on long standing, fibrotic, post-mastectomy lymphedema of the arm.
Dr. Brorson emphasized that CDT (combined decongestive therapy), which consists of manual lymph drainage, compression bandaging, skin care, exercise, and self care instruction is still the treatment of choice for lymphedema. He only recommends this liposuction procedure to individuals who could not receive treatment and have developed severe, long-standing, fibrotic lymphedema. He emphasized that after this procedure, the individual must wear compression garments daily and compression bandages nightly, forever. The procedure does not correct the inadequate lymph drainage. It removes large amounts of fibrous tissue from the limb, and necessitates a lengthy operation with extensive scarring.
While it may indeed reduce the overall girth of a very large, fibrotic limb a bit more than a course of CDT by virtue of the fact that the surgeon removes large amounts of subcutaneous tissue, the success of the follow-up home program for both therapies is determined by the compliance of the patient with wearing constant compression on the involved limb and doing the recommended exercise/self-massage program. After the surgery, if an individual decides s/he no longer wants to wear the compression garments/bandages, the limb is at extreme risk of swelling and ballooning out of shape due to the removal of the connective tissue structure of the limb with the liposuction.
This procedure is not without significant surgical risks posed by anesthesia, risk of fat emboli, and risk of post operative wound infection (in a limb with an impaired immune system due to lymph node dissection/radiation therapy). It is distressing to think that a medical insurance plan would probably be willing to pay large fees for liposuction as a "surgical correction for lymphedema" while possibly denying payment for the safer, less expensive course of CDT. Dr. Brorson was the first to say that his first recommendation to an individual with lymphedema post mastectomy, is a course of CDT. Too bad that the reporters who attended the NLN conference chose only to highlight this radical surgical approach to advanced lymphedema. Too bad they missed an opportunity to educate the public about CDT which is safe, non-invasive, and very successful in reducing and managing lymphedema, which to date, has no cure.
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