Tuesday, October 30, 2012
2012 Lighthouse Lymphedema Network Georgia Program
At the conference, we had a wide variety of speakers that covered a similar wide range of topics.
First, we had the mother of a lymphedema teen Courtney Day. Courtney started having LE as a young teen and she wrote this delightful book , “A Leg Up On Lymphedema.” Great uplifting book that I would recommend to anyone. She has now graduated from high school and is planning to go off to college.
Another speaker was Dr. Joe Feldman from Highland Park, Illinois. Dr. Feldman is also a LANA certified LE therapist. He is also a participant in the American Lymphedema Framework project , a founding member of the Association of Lymphology and is on the NLN Medical Advisory Committee. He gave an excellent talk on pediatric and adolescent lymphedema. He hit on keeping on top of the condition as Rebecca mentioned – doing what you need to do, but he also feels that sometimes there is too much of a panic among parents of LE children and they push the infants into compression wraps and bandages too early. The most difficult time too, in getting the patients to be compliant is when they hit the teen years. LOL…having been through that, I can really agree there. One important point he made is that it is based upon the severity of the child’s lymphedema. He also answered questions in a small group discussion with some parents.
A lymphedema patient by the name of Deborah Dobbins spoke of her own journey with LE. When she started her lymphedema treatment/management program, she not only lost the excess fluid but excess body fat as well. On her diet in combination with CDT, she lost a total of some 130 lbs I appreciated that fact too that she shared it is up to us to do what we need to do to handle our LE. She went from being just about totally disabled to up and go for it.
We had A Dr. David Chang from MD Anderson and their dept of Plastic Surgery. He spoke of all the surgeries, going mostly into the lymphatic venous anastomosis procedure that ties the lymph system directly into the blood’s vascular system. Thus far, this procedure seems to help although he also admits more long term research is absolutely called for. Also mentioned was the fact that this procedure usually works best on mild LE and not the more advaced cases. Lymphers like myself probably would not benefit at all with this. He also mention lymph node transfer expressing his concern that those of us with LE may have an all over “at risk” lymphatic system and that this surgery may well cause more lymphedema and again long term (more then just ten years) research is needed to verify its safety and efficacy. He also mentioned debulking surgeries. Thus far while he has done both of the previous procedures, he had not done a debulking surgery and only now has a patient that may actually require one. He mentioned that those should be reserved for the most desperate of cases. On each procedure he talked about, he not only mentioned the possible good benefits, but also mentions his concerns about the procedures and what each one may do to the patient. That is unusual for a doctor and I do commend him for that. Unfortunately, he had to leave so I wasn't able to speak much with him later.
Another speaker was a local podiatrist Dr. Richard Mistreeta who spoke on the foot and lymphedema. I wish I had his talk on paper so that I could put it on the website. So many lymphers just don’t realize how critical it is to take care of the foot and what disasters can happen if we don’t. He also gave some excellent pointers on how we can take care of our feet. For those in the Atlanta area, here is his office information: 3071 Peachtree Industrial Blvd Ste 110 - Duluth, GA 30097 - (770) 232-9778
One of our own members, therapists, Samantha Cannon presented a talk on “LE Treatment Success,” in one of her own patients. Amazing, I wish anyone who says CDT doesn’t work, could have seen before and after pictures of that patient. You would hardly believe it was of the same person.
Finally, we had Prof Jane Armer. Dr. Armer is a professor at the Missouri University School of Nursing and infact has her doctorate in Nursing. She serves to on the American Lymphedema Framework Project and serves on the Medical Advisory Committee of the National Lympehdema Network. She gave an update on the LE Framework Project activities. What they are doing is reviewing all lymphedema literature and bringing documentation of the best procedures for just about everything involving lymphedema. That way, we can have the best practices information available to us and for me as a patient, can have something we can actually take to the doctors. While this project is not well known, it does deserve our support. She closed talking a bit about lymhpedema effort in South Africa. The Lighthouse has helped those with LE in South Africa by sending lots of supplies, and wraps. It turns our Prof Armer and I have a common friend. A few years ago, a member of my lipedema group was very upset over the lack of LE therapist in SA. The final result of her initiative was that the Norton school sent trainers there and they trained and licensed some 38 people from several nations in Africa. That was a real treat to discover our common friend. BTW - for anyone who says one person can not make a difference – well this one woman sure did!!!
I also had the great pleasure of sitting with our speakers at dinner on Saturday after the conference and found them all to be very down to earth, compassionate people, very dedicated to their work in lymphedema.