Lymphedema In Both Legs Requires Continuous Drainage

DEAR DR. ROACH: I have lymphedema in both legs, and I'm undergoing drainage every day for two hours for the next two weeks. They wrap my legs with four to five different wraps and lightly massage them in an upward motion. I sleep in a recliner, and I sit in my wheelchair most of the day due to other surgeries.

I have been to three doctors, and they all said that I don't have a deep vein thrombosis (DVT). But not one told me what to do about the swelling, except to use compression stockings and keep my legs up. Nothing is helping the swelling. So, can you suggest another doctor to go to? -- J.L.

ANSWER: Whoever suggested the therapist who performs the lymphedema drainage did the right thing, as it is often the most effective treatment. However, two weeks isn't enough. You are likely to get better during treatment, but unless you continue the therapy, it will just come back. You or a family member may be able to learn how to do the wraps and massage.

Sitting in a wheelchair all day and sleeping in a recliner are not optimal. It's best to have your feet at least as high as your heart. You should also keep them higher than your heart for at least 15-30 minutes three times daily to let gravity help. I do understand that this can be a challenge for some people.

In addition, custom-made, graded compression stockings can be helpful in maintaining the gains made by manual drainage. Vascular surgeons tend to be the experts who most often know about the proper treatment of lymphedema. Unfortunately, this condition is commonly misdiagnosed and mistreated by some primary care physicians. A DVT, for example, can cause swelling, but it would be very unusual for someone to develop blood clots on both sides at the same time.

DEAR DR. ROACH: I am a 65-year-old female who recently experienced persistent genital arousal disorder (PGAD). I experienced this while taking alendronate. I also took this drug for a short time for osteopenia when I was in my 40s, and I also experienced PGAD, but not as bad this time around. The symptoms began after being on the drug for about nine months. Once I stopped this drug, all the symptoms when away. Otherwise, I'm in great health, and I've been exercising six to seven days for over 25 years, doing boot camp, stretching, yoga and cardio. Your thoughts? -- Anon.

ANSWER: PGAD is a rare disorder that affects women almost exclusively, characterized by persistent, unwanted, distressing sensations of genital arousal, which are unrelieved by sexual activity. It is thought to be a type of pain syndrome, but it can be related to several types of disorders. I have only seen two cases in my career, and I was unable to find any correlation to alendronate or similar drugs reported in the medical literature, although your experience is a compelling case. I recommend that your doctor report this possible side effect to the Food and Drug Administration.

It is very fortunate that the symptoms all went away with stopping the medication, as treatment for this can be frustrating. The few cases I have seen were misdiagnosed and not well-treated by physicians. I have seen successful treatment with medication and read of one case where the condition was found to be triggered by the pudendal nerve, requiring a nerve block to alleviate symptoms.

I recommend a specialized center for pelvic pain for an evaluation and treatment of this disorder.

========

Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to ToYourGoodHealth@med.cornell.edu or send mail to 628 Virginia Dr., Orlando, FL 32803.