With the coronavirus-19 pandemic (covid for short) everything else has been forgotten it seems. However, life has to go on too, including our struggles with lymphedema, so here is the report from the Annual Lymphedema conference that was held in Toronto, last November 1-3, 2019.
Annual meeting of the Lymphedema Society, Toronto, November 1-3, 2019.
The 2019 National Lymphedema conference was held in Toronto in November 1-3, 2019. The conference was organized by Dr. Anna Towers of McGill University, a lymphedema expert, Anna Kennedy, President of the Lymphedema association of Canada and others.
I attended a session on swimming exercises, designed specifically for Lymphedema by Dorit Tidhar (see aqua lymphatic therapy on this website), it was right at the swimming pool of the hotel. Although I had watched the video several times before, actually doing it is far better in getting to know how to do it right. In short, you start massaging slowly the lymph nodes of trunk and head first, to create space for the lymph to go, then the arms. First the lymph nodes of the temples (yes, who would think of it!), then the front of the ears, the sides of the throat, then around the clavicle, armpits, trunk, groin. You twist the trunk, kick with the feet, do the “kick in the stomach”, then you massage the arms, first from the elbows up, then the fingers. Finally, you swim forward kicking with both feet, with arms extended. I swim with big flippers, it is so much more fun, I can cheat to swim at least as fast as the Queen’s swim-team…
It was really rewarding to see that I had lost about a cm from my arm, in just an hour! After that, my sleeve did not feel as tight…
(You can borrow the video for free from BCAK office).
Update on Surgical techniques
The highlight of the meeting was the last plenary sessions on surgical techniques for Lymphedema.
Dr. Siba Haykal, a plastic surgeon at Princess Margaret Hospital in Toronto explained the different types of microsurgery she performs:
*Lymphatico-venous anastomosis (LVA) is a technique where functioning subdermal or deeper collecting lymphatic vessels are identified and anastomosed (ie joined) to adjacent veins to improve drainage of lymph by avoiding the blockage. It requires super-microsurgical techniques, since these vessels are less than 1mm in diameter. Multiple anastomoses are done throughout the length of the limb, usually under local anesthesia.
** Lymph node transfer: A flap with lymph nodes is removed from a donor site (groin, omentum, ie the membrane holding the intestines together, or others) and transferred to the arm that has lymphedema. There arteries and veins are anastomosed to revascularize the tissue. Some surgeons place the tissue with the lymph nodes in the old nodal basin, while others place it distally on the arm. It is expected that new lymphatics will grow out of the tissue (by a process called “lymphagiogenesis”) and anastomose with the lymphatics in the arm, creating new drainage pathways. The results regarding reduction of the volume of the arm are variable. Interestingly however, a significant reduction in incidence of cellulitis (ie infection) has been consistently reported. There are potential risks, such as lymphedema developing at the donor site or failure of the flap to take.
Dr. Haykal stressed that patient selection is important, with typically only lymphedema stage 2 or 3 being eligible candidates. She stressed that the surgery is not a cure. Conservative treatment is needed before surgery and compression after surgery, ie the patient must be motivated to follow pre- and post-surgical protocols for best results. The research regarding long-term results is still ongoing, but to date Dr. Haykal has seen a mean reduction in volume of 35% over a year, and most importantly, an improvement in quality of life with fewer infections.
Amy Beaith is a patient who made a moving presentation at the plenary session. She was diagnosed at age 5 with primary Lymphedema of her left leg. Despite compression and good skin care, she had the first bout with cellulitis at age 6. To reduce the volume she exercised daily including cycling and swimming, to the point that she became a competitive swimmer! Still, her condition worsened and lymphedema started at her right leg at age 30. Her life was revolving around her condition, she was having regular massage, was wearing compression night and day, still no matter what she was doing, she was faced with increasing problems through University and after having two children. A vegan and gluten-free diet helped, but still the volume was increasing as well as incidents of cellulitis, to ~10 a month!
Finally, she had surgery. She committed to a pre-surgery protocol of exercise, massage and compression then had surgery where 2.5 liters of fluid and fatty tissue were removed from her leg. This was followed by a lymph node transplant in France and a lengthy post-surgery protocol. She continues to wear compression but, wonder of wonders, she has had only one episode of cellulitis in the 18 months since her surgery!
Marize Ibrahim, PT, from Montreal provided a case series report of patient follow up of LV and lymph node transplant surgery. In fact, short-term preliminary data showed an increase in lymphedema volume in three limbs that have been operated in Montreal hospitals. This stressed the need for larger sample sizes and longer follow up to determine the long term effects of surgical interventions on lymphedema volume.
News on hand compression vs dexterity
There were several interesting exhibits at the meeting from companies making compression equipment, different materials and designs.
Hand compression is easier said than done. The glove has to be fitting perfectly, especially if it is of higher compression class, ie stiffness, AND the thumb has to be able to move, if you are to have any dexterity. I have tried gloves from Mediven, Jobst and Juzo, all German companies. However, all gloves are made flat, ie with the thumb on the same plane as the rest of the hand, like a palm-tree frond (see Figure 1). For me, this does not work. I’ve been using a computer mouse for many hours a day and the base of my thumb was getting very sore and blue with the pressure. I was afraid it would bleed, get infected and give me cellulitis. What was even scarier was that my thumb was getting numb and felt paralyzed because of pressure on nerves and then I had to take the glove off right away. To correct this problem, I made a “pleat” at the base of the thumb, to bring the thumb in its natural position, opposite the other fingers (see Figure 2).
As I was walking around the exhibits at the meeting, a glove caught my eye. A company in Toronto (yes!) is making gloves and sleeves for burn victims, and now they are making lymphedema gloves too. The design is perfect, especially around the thumb. It fits with the thumb at a right angle with the palm, what you need to be able to use a mouse, but also to hold or grab anything else (Figure 3). The company is called Recovery Garment Center, 16 Heintzman st, M6P2J6, Toronto, 416-762-3327. Alex Vigeant (Cell: 514-248-2573) took the measurements of my hand at the meeting and made me a glove. It fits perfectly, but I suggested some improvements that will be incorporated in the design. Stay tuned!
Figure 3. Glove and gauntlet made by Recovery garment Center. Note the fitting of the thumb!
Leda Raptis, Ph.D.
June 22, 2020