As most of the readers of Lymphedema eNews know, there is a lot that we don't know about lymphedema. Some questions are difficult to answer because they involve complicated or invasive testing of many patients. For example, it will require extensive and careful study to determine if patients with lymphedema have insufficient expression of growth factors for lymphatic vessels (see discussion of Growth Factors).

What is very surprising is how little we know about relatively simple questions. For example, last month I received a question about whether pregnancy worsens lymphedema. I have had experience with several women whose lymphedema got worse during pregnancy, but then got better after the pregnancy. What I did not know was whether I could expect that my experience would hold true for most women with lymphedema who become pregnant. To answer this woman's question, I reviewed the scientific and medical literature (see April 1999 eNews). Not surprisingly, very little information was available. As a result of this limited information, physicians find it very difficult to properly advise women with lymphedema what to do if they become pregnant.

The incidence of infections among patients with lymphedema is another area where the data is conflicting or incomplete. Some studies suggest that 10 to 20% of women with lymphedema have infections. Other studies suggest the number is much higher or much lower. I think that understanding this issue is very important. If a person with lymphedema has an infection and as a result, is much more prone to additional infections, then it is important that preventative measures be instituted before the first infection happens.

We recently conducted a survey that was part of Sammy Pry's capstone project (see March 1999 eNews). As promised, I am sharing some of the results of that study and some of the data is very interesting.

Among the respondents, 86% were female which is about what we expect. What was surprising was that over 44% of the respondents had infections of the affected limb and among those, 35% had 4 or more episodes. 75% of the patients who characterized themselves as having severe lymphedema had infections. These results suggest that either patients with worse lymphedema are more susceptible to infections or that infections result in worse lymphedema. In my experience, both cases are true.

In contrast to the patients with severe edema, less than 1/3 of the patients with mild or very mild lymphedema had infections in the affected limb; however, I find this result concerning because it suggests that even those patients who have very little lymphedema are at considerable risk for infections. The findings of this study suggest that all patients with lymphedema should be thoroughly educated by their doctors about the risks of infection and the methods of prevention.

I will continue to provide you with information from this survey as it is analyzed and if anyone wishes to participate, the survey is still available on line at our web site.

The summer is upon us and I hope everyone is enjoying the long, warm days. But, there have been several questions about the use of ice or ice bags for the treatment of lymphedema. The use of ice or cooling bags is not an accepted method of treatment for lymphedema. There are no studies that I know of that evaluate the safety and demonstrate the effectiveness of ice as a treatment for lymphedema. However, there are several reasons to be concerned about the possible effects of using ice on a limb with lymphedema. The blood flow to the skin of a patient with lymphedema can be diminished. As a result, it may take the skin from a limb with lymphedema much longer to recover from treatment with ice than a normal limb. Significant damage can occur to normal tissue that is exposed to ice or cooling bags. As a result, most guidelines call for limiting the time of exposure to ice to less than 15 minutes every few hours. Therefore, even brief periods of treatment with ice could be potentially harmful for patients with lymphedema. Since there is no data demonstrating the safety or benefit of using ice or cooling for lymphedema and since the use of ice could worsen lymphedema, I do not recommend this treatment for my patients. Anyone considering this method of treatment should consult with their doctor (see FAQ).

Tony Reid MD Ph.D