A Consideration of the History of Lymphedema Therapy in the US

John Fuller Beckwith9/18/2024

Prior to the arrival of Complete Decongestive Therapy (CDT) on American shores in the late 1980s, lymphedema treatment consisted primarily of pneumatic pumping, retro-grade massage and compression garments. This treatment was provided by physical and occupational therapists. The leading approach for training therapists at this time was the Linda Miller method. There was a heavy reliance on pneumatic pumps. Retro-grade massage uses deep milking strokes to squeeze fluid through tissues, and is known to be painful.

Around the same time, but on opposite sides of the country and unbeknownst to each other, Saskia Thiadens, a nurse in San Francisco, and Robert Lerner, a vascular surgeon in New York, each made concerted efforts to seek out better treatment options for their patients. They both settled on a form of treatment that had become standard in Germany, known by different names but essentially the same method: CDT. It is a comprehensive system, the constituent parts of which are based on settled research. The system of treatment as a whole is greater than the sum of the parts.

Saskia was able to successfully treat her patients and was so concerned that there was so little known about lymphedema and about this new treatment method that she was soon to form the National Lymphedema Network (NLN). Dr. Lerner consulted with the Foeldis at the Foeldi clinic and eventually was able to bring Guenter Klose and Joe Zuther to the US to create Lerner Lymphedema Services and Academy of Lymphatic Studies. Interesting to note, in the ‘90s, the Lerner clinic treated patients daily, twice per day, which is the standard even today at the Foeldi Clinic.

CDT was quite distinct from traditional physical therapy for lymphedema. It was more successful, less painful and showed quicker and more profound, consistent results. In the early 1990s, besides the Lerner training program, there were others that were roughly equivalent, including several therapists introducing the Casely-Smith method out of Australia. It may helpful to put into context that John and Judith Casley-Smith, as a husband and wife physician team in Australia interested in lymphatic diseases, had traveled to the Foeldi Clinic in Germany to consult with the Foeldis, before developing their version of CDT in Australia.

In any case, as patients had great results, word of CDT percolated throughout the US. Patients began to seek it out and over the years the demand for CDT-trained therapists grew. The NLN had its first conference in 1994 and held the conference in different cities around the US biannually for the next twenty years. The NLN conference grew rapidly and achieved a reputation for international speakers and substantive content.

As the NLN grew along with CDT, lymphedema therapy attained a sterling reputation. Naturally, and sadly, imitators and divisors of short cuts to training and treatment began to show up in the conversation. The result was that therapists who treated lymphedema could have different levels of training yet still all call themselves ‘certified,’ lymphedema therapists administering some form of CDT. This obviously created confusion. One goal of the NLN was to address standards of care for patients. By addressing standards of care patients (and doctors and insurance companies) could have some parameters with which to assess the care they might receive. Thus, a position paper on the components of effective and authentic CDT, including frequency and length of treatment visits, was created.

Additionally, in order to assist patients and providers in vetting therapists, a position paper on the standards of training was created. The effect of these two position papers was to clearly articulate a minimum standard of care. These position papers helped establish the credibility of the NLN.

One of the controversies that developed involved another international school of lymphedema therapy, the LeDuc Method. The LeDuc Method was/is comprehensive. It involves another variation of MLD but also uses pneumatic pumps. The major point of conflict however was around the hours of training for the therapists, the LeDuc method comprising 90 hours and the other methods of CDT 135 or more hours. The NLN position paper supported 135 hours as the minimum standard. Adding to this confusion, there were numerous shorter courses that popped up, often just three, four or five-day courses of less than 50 hours training. All these schools tended to call their graduates some version of a Certified Lymphedema Therapist (CLT).

It became clear toward the later ‘90s that there needed to be some other designation that separated the different versions of ‘CLT.’ In 1998, The American Cancer Society held a lymphedema workshop, one result of which was a recommendation to the lymphedema treatment community to, “establish certification guidelines to assure that specific treatments and facilities meet the state-of-the-art criteria.” The primary stakeholders in the NLN came together and ultimately settled on the creation of the Lymphology Association of North America (LANA) in 1999, officially, with the first LANA certification exam in 2001. The first LANA board were all connected in one way or another to the NLN. So LANA is a product of the NLN and is in response to the controversy and confusion around what constitutes an adequately trained CLT. LANA’s standards as initially created were the NLN standards. The criteria for training schools were the NLN’s criteria. The schools that originally met these criteria are the ones that fed therapists/CLTs toward the LANA exam.

The result of all of this was to create a new designation for a gold-standard lymphedema therapist or CLT – one with the LANA designation. This was an exciting time and it seemed that CDT would simply continue to grow out of these developments. And indeed, through 2010 or so that seemed to be the case as more and more therapists attained the LANA designation and it appeared that quality, gold-standard lymphedema treatment was spreading throughout the US. The NLN conferences seemed to grow in energy and excitement, becoming one of the important lymphedema conferences internationally and frequently had world-renowned speakers.

But, unfortunately, in parallel with the apparent growth of CDT as the standard of care pockets of the industry, clinics really, started to dilute the therapy, cutting down the frequency of visits, rationalizing that it was just a good if patients treated themselves, effectively cutting the, ‘dose,’ of the intervention. CDT as developed in Germany, and even as slightly modified for the US, was and is a different paradigm of outpatient therapy treatment. As such it had trouble being accepted as the correct model of treatment, and appears to have, in many cases, succumbed to the pressures of vision-less clinic managers who simply could not or would not see its benefits. Like so many successful ideas in history, some have chosen to present a product that claims the sterling reputation of the original, but in reality presents a very poor copy that does not measure up.

And so the arc of lymphedema treatment in the US, after several decades of exciting growth and establishing credibility, has trended downward, with a dilution of the standards such that many, if not most, clinics in the US don’t even provide basic CDT in which the therapist provides the skilled MLD and lymphedema compression bandaging, but rather teaching patients to treat themselves: bandage

themselves, perform self-MLD during the intensive phase of therapy, use Velcro compression wraps in place of the skilled lymphedema compression bandage. One of the saddest aspects of this, ‘regression to the mean,’ is that newly trained therapists don’t even know this history. They accept the status quo and unintentionally end up reinforcing this unfortunate trend. If you are one of these relatively new CLTs, please take some time to appreciate the original promise and beauty of CDT as introduced from Germany. And, if you have some passion and creativity, do what you can to guide your practice back to the true CDT.