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.

Thursday, October 25, 2012

Lymphoscintigraphy for differential diagnosis of peripheral edema: diagnostic yield of different scintigraphic patterns.

Lymphoscintigraphy for differential diagnosis of peripheral edema: diagnostic yield of different scintigraphic patterns.

Sept 2012

[Article in English, Spanish]


Servicio de Medicina Nuclear, Complejo Hospitalario Universitario de Badajoz, Badajoz, Spain. infantetorre@yahoo.com


Edema of the limbs is a common reason for medical consultation, for which the lymphoscintigraphy is considered to be a reliable method for its differential diagnosis.


To evaluate the usefulness of radionuclide studies in the differential diagnosis of edema, and the diagnostic yield of different scintigraphic patterns.


A total of 61 patients, mean age 43 years, referred to our Department in the last three years for suspected lymphoedema, were considered. One patient was discarded due to lack of diagnosis, 56 had lower limb edema and 4 upper limb edema. After intradermal injection of two doses of (99m)Tc-nanocolloid, scintigraphic scans were made at 30 and 120minutes. The final diagnosis was based on imaging tests, clinical course, and response to treatment. We calculated the parameters of the diagnostic yield of four different scintigraphic patterns (presence of dermal backflow, asymmetry-alteration in inguinal/axillary nodes, presence of collateral pathways, and visualization of intermediate lymph nodes), considering them individually and jointly.


The best diagnostic yield was achieved by considering dermal backflow and asymmetry in inguinal/axillary nodes (accuracy 88.9%, specificity 96.4%, PPV 95.5%). Evaluation of intermediate lymph nodes and presence of collateral pathways contributed little to the diagnostic yield, showing poor sensitivity and high false positive rates.


The lymphoscintigraphy had high diagnostic yield, allowing early treatment of lymphœdema. The dermal backflow and asymmetry in inguinal/axillary nodes had the greatest diagnostic accuracy. Evaluation of intermediate lymph nodes and visualization of collateral pathways contributed little to improving the diagnosis.

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Thursday, October 18, 2012

Genetics and Milroy Disease

FLT4/VEGFR3 and Milroy Disease: Novel Mutations, a Review of Published Variants and Database Update.

October 2012

Gordon K, Spiden SL, Connell FC, Brice G, Cottrell S, Short J, Taylor R, Jeffery S, Mortimer PS, Mansour S, Ostergaard P.


Department of Cardiac and Vascular Sciences, St George's University of London, London, United Kingdom.


Milroy disease (MD) is an autosomal dominantly inherited primary lymphedema. In 1998, the gene locus for MD was mapped to 5q35.3 and variants in the VEGFR3 (FLT4) gene, encoding vascular endothelial growth factor receptor 3 (VEGFR3), were identified as being responsible for the majority of MD cases. Several reports have since been published detailing pathogenic FLT4 mutations. To date, a total of 58 different variants in FLT4, 20 of which are unpublished, have been observed in 95 families with MD. A review of published mutations is presented in this update. Furthermore, the unpublished variants are presented including clinical data. 

Comparison of clinical features in patients and their families with the same mutations reveals incomplete penetrance and variable expression, making genotype-phenotype correlations difficult. Most mutations are missense, but a few deletions and one splicing variant have also been reported. Several animal models have confirmed the role of VEGFR3 in lymphangiogenesis and studies show mutant VEGFR3 receptors are not phosphorylated. Here, an MD patient with the same p.Ile1053Phe change as seen in the Chy mouse is presented for the first time. 

This finding confirms that this mouse lineage is an excellent model for MD. All the data reviewed here has been submitted to a database based on the Leiden Open (source) Variation Database (LOVD) and is accessible online at www.lovd.nl/flt4.


Wednesday, October 17, 2012

The Ideal Surgical Treatment for Lymphedema

In search of the ideal surgical treatment for Lymphedema. Report of 2nd European Conference on Supermicrosurgery (Barcelona - March 2012).]

[Article in French]


Service de chirurgie plastique reconstructrice et esthétique, hôpital Saint-Louis, AP-HP, université Paris Diderot, Sorbonne Paris Cité, 75475 Paris cedex 10, France. Electronic address: rausky@hotmail.com.


Since more than 50years, many surgeons all around the world try to find the perfect surgical technique to treat limb lymphedemas. Decongestive physiotherapy associated with the use of a compressive garment has been the primary choice for lymphedema treatment. Many different surgical techniques have been developed, however, to date, there is no consensus on surgical procedure. Most surgical experts of lymphedema met in the second European Conference on supermicrosurgery, organized on March 1st and 2nd 2012, in San Pau Hospital, Barcelona. Together they tried to clarify these different options and ideally a strategy for using these techniques.   Elsevier

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