Because I just moved, I had to delay this follow-up post to my earlier post this month on my week-long trip to Dallas. I didn’t come to the heartland just to see my son, although that alone would be ample reason to visit. The main reason? To attend, as a patient-advocate, the biannual National Lymphedema Network (NLN) Conference for healthcare professionals.
This year the exhibitors outdid themselves, and the presenters waxed professional in every respect.
Wednesday, Sept. 5:
The Tenth NLN conference Research Roundup began on Wednesday with preconference workshops targeted for the medical practitioners. We patient-advocates also could participate if we enrolled separately in the courses. Topics ranged from management of lymphedema (including skin and wound care) to compression and exercise strategies for those with lymphedema. One workshop targeted medical doctors who were interested in learning more about the anatomy and physiology of lymphedema. How refreshing that M.D.’s attended this, so they can take home what they learned to their community of professionals who never heard of lymphedema. We hope the lessons learned from the course will be broadcast all over the U.S. and across the world, since so few doctors know what to do about lymphedema–if they’ve even heard the term.
Thursday, Sept. 6:
We patient-advocates were treated each morning to a special mentoring session with medical doctors specializing in lymphedema. They patiently answered all our questions and helped us understand better the medical jargon and design of clinical studies. Thursday morning we had a nice chat with the doctor assigned for that day, and got acquainted with each other.
The plenary sessions that followed provided a wealth of information on lymphedema research. What I found most interesting were the various presentations on surgical options for lymphedema. The clinical results have come a long way since 2010, when we had the last NLN conference. A pioneering surgeon in Paris has performed more than a thousand lymph node transplant surgeries with some success. Now a surgeon in the LA area who specializes in breast reconstruction surgery has taken up the gauntlet to practice lymphedema surgery in the U.S. His presentation, titled “Combined Lymphatic Liposuction and Vascularized Lymph Node Transfer for Treatment of Long-term, Non-pitting Lymphedema,” raised many questions. After surgery, the patient must continue with the self-care portion of complete decongestive therapy. And most patients must still wear a compression garment the rest of their lives. An interesting discussion ensued on the risk of transplanting healthy nodes from the groin area to the axilla–whether lymphedema could develop in the leg as a result of removal of the nodes.
Friday, Sept. 7:
We had to select in advance our workshops on Friday. I chose “Developing Research Competence,” “Unraveling the Mysteries of Insurance,” “Living with Lymphedema – Impact on Self Care,” and “Integrative Approaches to Lymphedema Management.” Through these seminars I learned how to conduct an evidence-based research study, how to navigate through the Medicare quagmire, how to ensure I give myself the optimum self-care regimen, and how to eat properly and relax. During the last workshop, the lavender scents passed around to us and the lilting voice of the Canadian speaker lulled at least have the audience to sleep, I among them.
Jan relaxing at cancer survivor exhibit in Dallas
Saturday, Sept. 8:
The plenary sessions took over once again. This time we learned about yoga for breast-cancer-related lymphedema (a good thing), body image for those with head and neck lymphedema, and lymphatic abnormalities in contralateral arms in breast-cancer-related lymphedema revealed by near-infrared fluorescence imaging. I don’t have lymphedema in the arm where surgery wasn’t performed, but I know people who do. I plan to be as careful with that arm as I am with my affected arm. No sense taking a chance in view of this new study.
Saturday also gave us two lively debates on lymphedema surgery and on the surveillance model for breast cancer rehabilitation. We got to hear pros and cons for each modality and make our own decision on who is right, or if anyone is right.
Sunday, Sept. 9:
Unfortunately, I had to leave early Sunday morning. But the lectures continued, including some on pneumatic compression for lymphedema.
The Exhibit Hall was open for business up through Saturday. This year the hotel ballroom hosted more vendors than I’ve ever seen before. The options for compression garments are overwhelming. Whether you want to be a fashion diva or blend into the environment, whether you have leg, arm, head-and-neck or truncal lymphedema, there’s a product designed specifically for you. And of course pumps and FlexiTouch devices were on display for all to see. Early one evening I was able to get a neck and shoulder massage from one vendor. After that experience, I wanted to go back each evening for an encore performance!
If you are a member of the NLN, the next issue of LymphLink that you receive will contain articles about the conference by all the new 2012 patient-advocates. They will present their impressions and take-home messages from all that they digested.
This conference outshone all the previous NLN conferences I’ve attended. And that’s hard to do!
Now for some pictures of downtown Dallas that my lymphedema therapist took at one of the rare times when we had free moments to spare:
Cattle statues near conference hotel
A cowboy with his cattle in Dallas
Dallas skyline from our hotel
Hotel with Reunion Tower restaurant in view
Old courthouse in Dallas near JFK assassination site