Thursday, August 30, 2012

Primary upper-limb lymphedema.

Primary upper-limb lymphedema.

August 2012

Vignes S, Arrault M, Yannoutsos A, Blanchard M.


Department of Lymphology, Centre National de Référence des Maladies Vasculaires
Rares (lymphœdèmes primaires), Hôpital Cognacq-Jay, 75015 Paris, France.


Background: Lymphedema is a general term applied to designate pathological regional accumulation of protein-rich fluid. It can be either primary or secondary, mainly after cancer treatment.

Objective: To analyze clinical and lymphoscintigraphic characteristics of  primary upper-limb lymphedema. 

Method: All patients with upper-limb lymphedema (January 2007-December 2011) recruited in a single Department of Lymphology were included.

Results: Sixty patients (33 females, 27 males) were enrolled. For the 54 noncongenital lymphedemas, mean age at onset was 38.5 (3-82) years. Lymphedema was unilateral in 51 (85%) patients. It always affected the hand, but less often the forearm (55%) or upper arm (23%). Eleven (18%) patients developed cellulitis after lymphedema onset. Twenty-one (35%) patients had associated lower-limb lymphedema. Forty-six patients (with 49 lymphedematous limbs) underwent
lymphoscintigraphy: axillary lymph-node uptake was diminished in 18 (37%), absent in 24 (49%) and normal in 7 limbs (14%). Among the 43 patients with unilateral lymphedema and lymphoscintigraphy, 28 had epitrochlear node visualization, suggesting a re-routing through the deep lymphatic system, 15 only on the lymphedematous limb and 22 on the contralateral nonlymphedematous limb. Median follow-up was 103 months and 57/60 (95%) patients considered their lymphedema stable.

Conclusion: Primary upper-limb lymphedema appears later in life than lower-limb lymphedema without sex predominance. Infectious complications are rare and patients considered the lymphedema volume stable throughout life.


Wednesday, August 29, 2012



WE HAVE ONLY UNTIL SEPT 4, 2012, TO RESPOND TO THIS!!  It is up to us to have our voices heard VERY loudly on this. 

Medicare Part B


CMS issued proposed rule, CMS1590P, on July 6 that includes a proposal to collect data on patient function related to physical and occupational therapy, and speech language pathology services. Section 3005(g) of the Middle Class Tax Relief and Jobs Creation Act (MCTRJCA) requires CMS to implement, beginning on January 1, 2013, ". . . a claims based data collection strategy that is designed
to assist in reforming the Medicare payment system for outpatient therapy services subject to the limitations of section 1833(g) of the Act.

Such strategy shall be designed to provide for the collection of data on patient function during the course of therapy services in order to better understand patient condition and outcomes."

The proposed appeared in the July 30, 2012 Federal Register. CMS will accept comments on the proposed rule until September 04, 2012, and will respond to them in a final rule with comment period to be issued by November 1, 2012.

The Problem:
1. New non-payable data collection codes for reporting functional limitations for each claim;
2. Goal is new therapist reimbursement based on improvement of function and complexity of services;
3. Proposed criteria for evaluating improvement of functional limitations are all physical measures There are no measures proposed that would measure
lymphedema severity or improvement of lymphatic function;


Write a letter to CMS pointing out the impact the new rule will have to you, as a lymphedema patient, if there are no quality measures appropriate to describe the severity/complexity of the “functional limitation” of lymphedema, and
therefore neither the severity/complexity of the functional limitation, nor the progress attained by the therapist. This lack of means of describing and
evaluating the improvement achieved by lymphedema therapy could result in the
incorrect conclusion that the therapy is of no medical value and disapproved.

To be assured consideration, comments must be received at one of the addresses provided below, no later than 5 p.m. on September 4, 2012.

ADDRESSES: In commenting, please refer to file code CMS–1590–P. Because of staff and resource limitations, we cannot accept comments by facsimile (FAX) transmission. You may submit comments in one of four ways (please choose only
one of the ways listed):

1. Electronically. You may submit electronic comments on this regulation to regulations Follow the instructions for ``submitting a comment.''

2. By regular mail. You may mail written comments to the following address ONLY:
Centers for Medicare & Medicaid Services, Department of Health and Human
Services, Attention: CMS–1590–P, P.O. Box 8013, Baltimore, MD 21244–8013.

Please allow sufficient time for mailed comments to be received before the close
of the comment period.

3. By express or overnight mail. You may send written comments to the following address ONLY: Centers for Medicare & Medicaid Services, Department of Health and Human Services, Attention: CMS–1590–P, Mail Stop C4–26–05, 7500 Security Boulevard, Baltimore, MD 21244–1850.

4. By hand or courier. If you prefer, you may deliver (by hand or courier) your written comments before the close of the comment period to either of the
following addresses:

a. For delivery in Washington, DC— Centers for Medicare & Medicaid Services,
Department of Health and Human Services, Room 445–G, Hubert H. Humphrey
Building, 200 Independence Avenue SW., Washington, DC 20201. (Because access to
the interior of the Hubert H. Humphrey Building is not readily available to persons without Federal government identification, commenters are encouraged to leave their comments in the CMS drop slots located in the main lobby of the building. A stamp-in clock is available for persons wishing to retain a proof of filing by stamping in and retaining an extra copy of the comments being filed.)

b. For delivery in Baltimore, MD— Centers for Medicare & Medicaid Services,
Department of Health and Human Services, 7500 Security Boulevard, Baltimore, MD
21244–1850. If you intend to deliver your comments to the Baltimore address, please call telephone number (410) 786– 7195 in advance to schedule your arrival with one of our staff members. Comments mailed to the addresses indicated as appropriate for hand or courier delivery may be delayed and received after the comment period.

Robert Weiss, M.S.
Lymphedema Patient Advocate
National Lymphedema Network

Patient awareness and knowledge of breast cancer-related lymphedema in a large, integrated health care delivery system.

Patient awareness and knowledge of breast cancer-related lymphedema in a large, integrated health care delivery system.

Sept 2012

Marilyn L. KwanLing ShenJulie R. MunnekeEmily K. TamPaula N. ParteeMary André,Susan E. KutnerCarol P. SomkinLynn M. Ackerson and Saskia R. J. Thiadens


Division of Research, Kaiser Permanente Northern California, 2000 Broadway, Oakland, CA, 94612, USA,


Breast cancer patients have voiced dissatisfaction regarding their education on breast cancer-related lymphedema risk and risk reduction strategies from their clinicians. Informing patients about lymphedema can contribute to decrease their risk of developing the condition, or among those already affected, prevent it from progressing further. In this cross-sectional study, a lymphedema awareness score was calculated based on responses to a brief telephone interview conducted among 389 women diagnosed with invasive breast cancer at Kaiser Permanente Northern California from 2000 to 2008 and had a previous record of a lymphedema-related diagnosis or procedure in their electronic medical record. 

During the telephone interview, women self-reported a lymphedema clinical diagnosis, lymphedema symptoms but nolymphedema diagnosis, or neither a diagnosis nor symptoms, and responded to questions on lymphedema education and support services as well as health knowledge. Multivariable logistic regression [odds ratio (OR) and 95 % confidence interval (CI)] was used to determine the associations of selected sociodemographic and clinical factors with the odds of having lymphedema awareness (adequate vs. inadequate). 

These results can help inform educational interventions to strengthen patient knowledge of lymphedema risk and risk reduction practices, particularly in an integrated health care delivery setting. With the growing population of breast cancer survivors, increasing patient awareness and education about lymphedema risk reduction and care after cancer diagnosis is warranted.

View the full report:

Flow control in our vessels: vascular valves make sure there is no way back.

Flow control in our vessels: vascular valves make sure there is no way back.

Aug 2012


Lymphatic Development Laboratory, Cancer Research UK London Research Institute, 44 Lincoln's Inn Fields, London, WC2A 3LY, UK,


The efficient transport of blood and lymph relies on competent intraluminal valves that ensure unidirectional fluid flow through the vessels. In the lymphatic vessels, lack of luminal valves causes reflux of lymph and can lead to lymphedema, while dysfunction of venous valves is associated with venous hypertension, varicose veins, and thrombosis that can lead to edema and ulcerations. Despite their clinical importance, the mechanisms that regulate valve formation are poorly understood and have only recently begun to be characterized. Here, we discuss new findings regarding the development of venous and lymphatic valves that indicate the involvement of common molecular mechanisms in regulating valve formation in different vascular beds.

Full Text Article available through Springerlink.  URL will not work when placed in this article.

Tuesday, August 28, 2012

Lymphedema People FACEBOOK

A very special announcement

We are now in Facebook....come join us!!!!!!!!!


Amazing amount of discussions, great people, good comradery, solid info!


Monday, August 27, 2012

Lymphedema treatment in palliative care: a case study.

Lymphedema treatment in palliative care: a case study.

Lymphoedema treatment in palliative care: a case study.

August 2012


This article will focus on the evidence to support the treatment of a palliative patient who was diagnosed with cancer-related secondary lymphoedema. A case study approach has been adopted, which focuses on the anatomy and physiology oflymphoedema and how this is treated through an analysis of the treatment regimens. To establish the effectiveness of these treatment regimes, the use of objective and subjective tools will also be analysed to ascertain their importance within care. The findings of this case study and the supporting evidence indicate a positive correlation between the use of lymphoedematreatment methods in both limb volume reduction and quality-of-life outcomes. However, robust evidence is required to expand the importance of each treatment used in the area of lymphoedema management.

The Puzzle Lymphedema Book

The Puzzle Lymphedema Book


Here's our new book on lymphedema. I also have a chapter with several articles.....

(including my own story). Pat


The book is compiled so that people who have been touched by lymphedema can share their stories; their trials and tribulations, their sadness and disappointments, their strength and hopes. It is intended to encourage, educate and inspire patients and loved ones, who can often feel isolated and uninformed.
We hope to increase awareness and general knowledge of a condition that is often overlooked and misdiagnosed, yet which can have monumental physical and emotional impact on the lives that it affects.

Not every story has a happy ending, yet there is hope. By sharing these stories with one another, we can learn from the struggles and successes that others have
experienced, and can help each other to live well with lymphedema.

How do I get this book ???

This book will be available at:

15th State of Georgia Lymphedema Education And; Awareness Program 

15th State of Georgia Lymphedema Education & Awareness Conference
Saturday, October 27, 2012
Emory University Hospital Midtown, 550 Peachtree Street, Atlanta, GA 30308
Speakers include: Jane Armer, PhD, Richard Mistretta, DPM,
 Joseph Feldman, MD, and  David W. Chang, MD
  You may register online by clicking here To register by mail simply print the conference brochure and fill in the required information.  Print the Conference Brochure here.

Lighthouse Lymphedema Network Store

Book descrption

ALSO: We have a cookbook with recipes from members and friends:

LLN Favorite Recipes

Please mail your completed order form and donation to:

Lighthouse Lymphedema Network Book
10240 Crescent Ridge Drive
Roswell, GA 30076

Please send a donation of :
$19.95 per copy
Plus $5.00 per copy for Shipping Costs

Order Form

Name: Last First___________________________________________________

Mailing Address____________________________________________________

City State ZIP Code_________________________________________________

Home Telephone Number Cell Telephone Number________________________

Email Address_____________________________________________________

Number of Copies you would like to order______________________________


Amount Enclosed________________________

Sunday, August 26, 2012

Discovery of a yellow nail syndrome with major hypothyroidism.

Discovery of a yellow nail syndrome with major hypothyroidism.

Aug 7 2012


Service de pneumologie, hôpital de la Cavale-Blanche, CHU de Brest, boulevard Tanguy-Prigent, 29609 Brest cedex, France.


The yellow nail syndrome is rare. It associates the triad: yellow nails, lymphedema and thoracic events. We report two cases of this syndrome with major hypothyroidism. These observations suggest an association between these two diseases.

EMconsulte 2012

Full Text Article: EMconsulte

Saturday, August 25, 2012

Children with Lymphedema Yahoo Group

Children with Lymphedema Yahoo Group

If you have a child with lymphedema, care for a child with lymphedema or am a family member of a child with lymphedema I wanted to be sure you knew about our very special children's group.

It is called Children with Lymphedema.

If you have ever felt alone, confused or overwhelmed with this, please do join us.

The camaraderie, information, encouragement and help is incredible within the group.  Members are from all over the world too.

See You There

Angiosarcoma in Chronic Lymphedema

Angiosarcoma in Chronic Lymphedema

(Stewart-Treves Syndrome

To the Editor:

Angiosarcoma is a malignant endothelial tumor that can
form in any part of the body, including the skin. It is known as hemangiosarcoma or lymphangiosarcoma, depending on whether it derives from the endothelium of the blood vessels or the lymph vessels, respectively.

It was first described in 1948 by Stewart and Treves in a
series of 6 cases of lymphangiosarcoma after chronic postmastectomy lymphedema; since then, more than 400 cases have been reported of angiosarcoma associated with chronic lymphedema at different sites.

We report the case of a patient with angiosarcoma of
the right arm, associated with chronic lymphedema due to non-Hodgkin lymphoma.

The only relevant history reported by the 84-year-old
woman was a nodule in the lower right cervical region;
results of a fine-needle aspiration biopsy of the nodule were negative for malignancy. Because of the growth of the nodule, a new fine-needle aspiration procedure was performed a year later and cytology results indicated suspected lymphoma; resection and biopsy were performed and a diagnosis of non-Hodgkin large B cell (CD20) lymphoma was established.

Computed tomography (CT) revealed several bilateral
enlarged axillary lymph nodes; the largest of these, measuring 2.5-3 cm, was on the right side and in contact with the rib. The CT scan also revealed multiple enlarged hilar, mediastinal, para-aortic, and retroesophageal lymph nodes, and a 4.3-cm solid mass in the anterior segment of the right upper lobe of the lung.





Stewart Treves Syndrome

The genetics of vascular anomalies.

The genetics of vascular anomalies. 

August 21, 2012


aDepartment of Human Physiology, University of Milan, Milan, Italy bDivision of Medical Genetics, Department of Pediatrics cDivision of Otolaryngology, University of Utah, Salt Lake City, Utah, USA.



To summarize clinically relevant findings in the genetic cause and gene expression of vascular anomalies.


Infantile hemangioma demonstrates familial clustering and is associated with atopic disease. Variable gene expression is seen in infantile hemangioma during proliferation and involution. Capillary malformation may be sporadic or inherited in an autosomal dominant pattern. Capillary malformation-arteriovenous malformation is caused by mutation in RASA1. Some inherited forms of lymphedema are due to mutation in VEGFR3. Venous malformation may be sporadic, paradominant, or autosomal dominant inheritance. Autosomal dominantly inherited forms of venous malformation are due to mutations in TIE2/TEK. Additionally, TIE2 somatic mutations have been identified in about half of sporadic venous malformations.


Multiple genes have been identified causing inherited forms of vascular anomalies including capillary malformations, venous malformations and lymphedema. Variable gene expression of infantile hemangioma during proliferation and involution may offer new therapeutic targets for treatment.

Lymphedema Genetics

When I originally became active in online groups, blogs and websites, there were only two genes identified as being involved with causing hereditary lymphedema.
Now, eight specific genes have been identified as causing sevweral hereditary lymphedema syndromes and associated syndromes with lymphatic malformations.
At our main website Lymphedema People, we have complete information pages on each one:

Friday, August 03, 2012

15th Annual State of GA Lymphedema Education Program

Winship Cancer Institute of Emory University

and The Lighthouse Lymphedema Network

Cordially invite you to the

15th State of Georgia Lymphedema Education & Awareness Conference

Saturday, October 27, 2012

Emory University Hospital Midtown, 550 Peachtree Street, Atlanta, GA 30308


Speakers include: Jane Armer, PhD, Richard Mistretta, DPM,

Joseph Feldman, MD, and David W. Chang, MD

The Conference Brochure may be viewed by clicking here:\

You may register online by clicking here: