Q: I am 40 years old and have secondary lymphedema of both legs from injuries sustained in a car accident in 1993. I notice that when it is time for my monthly period, no matter what I do or how much I use my lymphatic pump (Wright Linear Pump, which usually helps a great deal), I swell up so extremely the fluid even moves into the pelvis and abdomen, and my right leg is in excruciating pain. After my period the swelling in my abdomen subsides. FYI: My right leg developed lymphedema from cellulitis after the accident (from glass puncture wounds) and there is a constant nagging ache. My left leg does not hurt. What do you know of the connection between the two?
A: As you know, most women accumulate fluid before and during their monthly period. But patients with lymphedema particularly have problems and often feel extremely bloated during this time. Clearly, the affected limb, and often the rest of the body, feels extremely uncomfortable, and the compression garment becomes too tight. My advice is: lower your salt intake even more during this time; drink lots of water to dilute and improve the circulation and increase urination, and maybe wear a larger garment.
Patients who have had severe cellulitis often end up with persistant subclinical inflammations resulting in ongoing pain/discomfort. You might try prophylactic antibiotics for a period of 3 months (Pen VK 250mg one tbl. day).
Q: If you can't afford Manual Lymph Drainage, is it safe to buy and use a CircAid or Reid Sleeve? Do you have to use both of them or, if you can only afford one, which one should you use?
A: You can use both of them or only one. The Reid sleeve can be used as a maintenance garment after the limb has been decongested and usually is worn throughout the night instead of bandaging. The CIRCAID is used during the day and worn over the thigh-high compression stocking (the below -the-knee CircAid). This also is available in a full-length style which is worn during the night to replace bandaging. Both the Reid sleeve and the CircAid devices are extremely effective and many patients use both. If you can only afford one, consider purchasing the one that will bring the most simplicity to your daily self-care program.
Indeed, Manual Lymph Drainage can be expensive or often insurance companies will not reimburse for this treatment. I highly recommend investing in the Self-Care videotape designed by JoAnn Rovig, LMT for patients who have no therapist in their area or who cannot afford treatment. Many patients and clinics are using this video and the feedback has been excellent. The video instructs viewers in the educational and self-management aspects of lymphedema. (The video is available through the NLN, please consult the Reprints List.).
Q: How do you get your doctor to listen to your concerns about lymphedema, especially if s/he doesn't think it is a serious problem?
A: Contact the NLN office and request a copy of the Consensus document: The Diagnosis and Treatment of Peripheral Lymphedema written by the Executive Committee of the International Society of Lymphology (Lymphology 28 113-117). Bring this to your doctor's attention and make sure he or she reads it. It's an excellent first step to educating your physician and other health care providers and, hopefully, getting the care you need.
Q: The NLN "18 Steps To Prevention" suggest that lymphedema patients avoid hot tubs. If a patient has upper limb lymphedema, can s/he go into the hot tub up to the waist (or up to the knees for sore feet or weary legs), or must s/he avoid hot tubs altogether?
A: Yes, it seems to be okay for patients with upper extremity lymphedema to use the hot tub for the lower body. Just keep the affected arm out and, in the meantime, enjoy!
Attention Clinicians: The following challenging questions are in need of answers. What is your opinion? Please send, fax or *e-mail* your input to: National Lymphedema Network, 2211 Post St., Suite 404, San Francisco, CA 94115-3427. Fax: 415-921-4284.
Q1: I have just evaluated a patient who has Milroy's disease and has suffered a course of recurrent infections and stage three lymphedema, ultimately resulting in an above-knee amputation. He continues to have stage three lymphedema in the residual limb.
My questions are: does anyone have any suggestions as to how best to keep compression bandages effectively in place, and has anyone been successful in transitioning the patient to use a prosthesis without further compromising the lymphedema?
Q2: A number of my patients have inquired about the safest method for removal of axillary hair after undergoing a mastectomy or axillary dissection. From my experience with preparation of hair-bearing skin prior to surgery, the safest method with least risk of infection would be clipping. This is also probably the least satisfactory method from a cosmetic standpoint. I have concerns about chemical depilatories, shaving and waxing with respect to infection and subsequent lymphedema. I'd be interested in hearing from others re: your experience and recommendations.
The following responses were received in answer to the "In Your Opinion" questions posted in the January-March 1997 issue of the NLN Newsletter:
Q1: Thirty-four years ago (age four), I had a Wilm's tumor followed by secondary lung cancer. The tumor was removed. At the age of 38 (last year), I had a modified radical mastectomy and was treated with chemo and radiation to the right chest area.
I have recently developed lymphedema of my right arm. I'm finding that the correct pressure garment for my arm (and I have tried plenty) is causing me severe pain in my right chest, sort of like screaming nerves. What might be causing this and what should I do? I am very positive about getting on with my life, but find that pain as a constant companion is rather debilitating.
A1(#1): In my opinion, it sounds suspiciously like a "Causalgia" syndrome (persistent burning resulting from direct or indirect [vascular] injury of sensory fibers of a peripheral nerve). It is very difficult to treat. I have been using escalating medications: Neuronton then antidepressants. Occasionally nerve blocks will help. The patient needs to work with a physician who is interested in trying to ameliorate her problem and has some experience. Daniel N. Weingrad M.D. F.A.C.S. (305) 535-2170, or e-Mail: email@example.com
A1(#2): I believe that the problem is caused by scar tissue, caused by the lung surgery and aggravated by the radiation. With the increased pressure in the tissue created by the compression sleeve, there is increased tension exerted on the myofascial chains connecting the arm to the chest. Working on the scar tissue of the chest and using the global approach specific to osteopathy to release all the myofascial chains related to her chest and upper extremity, together with more Manual Lymph Drainage, could be useful. I recommend that you find an osteopath who practices manual osteopathy (which not all osteopaths do). Even after many years, the scar tissue can still be worked on. Sylvie Erb, P.T. (212) 502-0849
Q2: I had a lumpectomy with right axillary node dissection one year ago. I have had mild right arm lymphedema since then, no real problem unless I overuse the arm. After resting and elevating it, it's okay, though there is some slight constant swelling.
Recently I have had pain down my right side and feel what feels like cords of swelling under the skin, from the middle of my rib cage into my abdomen with point tenderness. Is this more lymphedema? Neither one of my doctors is willing to say. If it is, is there anything I can do about it?
A2: I have seen a number of patients with a variation of "Mondor's" disease: thrombophlebitis of a subcutaneous vein or veins in the breast area. A long firm tender cord- or string-like structure extends from the breast up into the axilla or down toward the epigastrium. It is benign, which is important because its appearance may be confused with cancer of the breast. Heat, NSAIDS and occasionally nerve blocks are helpful. It usually subsides with time. Daniel N. Weingrad M.D. F.A.C.S. (305)535-2170, or e-mail: firstname.lastname@example.org.
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 first day of the month prior to publication.