lymphedemahome

Department of Plastic and Reconstructive Surgery, Tygerberg Hospital/ University of Stellenbosch, Francie van Zijl Drive, Parow, Private Bag X3, South Africa. chrisenkate@mweb.co.za

OBJECTIVE: The Charles procedure is an aggressive operation usually only indicated for severe lymphedema as it often yields an unpredictable outcome. We modified this procedure in order to achieve predictable results.

METHODS: The modification entailed the use of a negative-pressure dressing after the initial debulking surgery and then the delay of skin grafting by 5 to 7 days. Patients were graded by means of a lower limb functional scale to assess their functional status pre- and postoperatively.

RESULTS: Eight patients with severe primary lymphedema underwent a modified Charles procedure. All patients underwent this procedure without any major complications with an average resection of 8.5 kg of lymphedematous tissue. Minor complications included operative blood loss and additional regrafting (3 patients). The average follow-up was 27.3 months.

CONCLUSION: The results show a dramatic functional improvement in quality of life and a high overall satisfaction rate of patients undergoing this procedure. Our modification makes this a relatively simple procedure with a predictable outcome.

by: Song Lu, Tien A Tran, David M Jones, Dale R Meyer, Jeffrey S Ross, Hugh A Fisher, John A Carlson

Journal of Cutaneous Pathology, Vol. 9999, No. 9999. (2008) 

Background: Lymphedema typically affects a whole limb. Rarely, lymphedema can present as a circumscribed plaque or an isolated skin tumor.

Objective:  To describe the clinical and pathologic characteristics and etiologic factors of localized lymphedema. 

Methods: Case2013control study of skin biopsy and excision specimens histologically diagnosed with lymphedema and presenting as a localized skin tumor identified during a 4-year period.Results:  We identified 24 cases of localized lymphedema presenting as solitary large polyps (11), solid or papillomatous plaques (7), pendulous swellings (4), or tumors mimicking sarcoma (2). Patients were 18 females and 6 males with a mean age of 41 years (range 16201374). Anogenital involvement was most frequent (75%) 2013 mostly vulva (58%), followed by eyelid (13%), thigh (8%) and breast (4%).

Causative factors included injury due to trauma, surgery or childbirth (54%), chronic inflammatory disease (rosacea, Crohn's disease) (8%), and bacterial cellulitis (12%). Eighty-five percent of these patients were either overweight (50%) or obese (35%). Compared with a series of 80 patients with diffuse lymphedema, localized lymphedema patients were significantly younger (41 vs. 62 years old, p = 0.0001), had no history of cancer treatment (0% vs. 18%, p = 0.03), and had an injury to the affected site (54% vs. 6%, p = 0.0001).

Histologically, all cases exhibited dermal edema, fibroplasia, dilated lymphatic vessels, uniformly distributed stromal cells and varying degrees of papillated epidermal hyperplasia, inflammatory infiltrates and hyperkeratosis. Tumor size significantly and positively correlated with history of cellulitis, obesity, dense inflammatory infiltrates containing abundant plasma cells, and lymphoid follicles (p < 0.05). A history of cellulitis, morbid obesity, lymphoid follicles and follicular cysts predicted recurrent or progressive swelling despite excision (p < 0.05).

Conclusions:  Localized lymphedema should be considered in the etiology of skin tumors when assessing a polyp, plaque, swelling or mass showing dermal edema, fibrosis and dilated lymphatics on biopsy. A combination of lymph stasis promoting factors (trauma, obesity, infection and/or inflammatory disorders) produces localized elephantiasis.

Wiley InterScience

Medical Genetics Unit, Clinical Developmental Sciences, St Georges University of London, Cranmer Terrace, London, SW17 0RE, UK.

Milroy disease (hereditary lymphoedema type I, MIM 153100) is a congenital onset primary lymphoedema with autosomal dominant inheritance. Mutations in the gene, vascular endothelial growth factor receptor 3, VEGFR3 (FLT4), are known to cause Milroy disease, but there is uncertainty about the prevalence of VEGFR3 mutations in patients with primary lymphoedema and more specifically in those with a phenotype that resembles Milroy disease. This study aims to address this issue and thereby delineate the Milroy disease phenotype. Fifty-two patients with primary lymphoedema were analysed for mutations in the coding regions of VEGFR3. Patients were divided into four groups: Typical Milroy disease with family history (group I), typical Milroy disease with no family history (group II), atypical Milroy disease (group III), and complex primary lymphoedema (group IV). Results demonstrated that with rigorous phenotyping the likelihood of detecting VEGFR3 mutations is optimised. Mutation prevalence is 75% in typical Milroy patients with a family history (group I) and 68% if positive family history is not a diagnostic criterion. A positive family history is not essential in Milroy disease. The likelihood of detecting VEGFR3 mutations in patients who have a phenotype which is not typical of Milroy disease is very small (<5%). For the 22 mutation positive patients, 14 novel VEGFR3 mutations were identified, two of which were in exon 22 and one in exon 17, confirming that these exons should be included in VEGFR3 analysis. No mutations were found outside the kinase domains, showing that analysis of this part of the gene is not useful for Milroy disease patients. VEGFC, which encodes the ligand for VEGFR3, was sequenced in all patients with typical Milroy disease (groups I and II) and no mutations were identified.

Medical Genetics Unit, Clinical Developmental Sciences, St Georges University of London, Cranmer Terrace, London, SW17 0RE, UK.

Milroy disease (hereditary lymphoedema type I, MIM 153100) is a congenital onset primary lymphoedema with autosomal dominant inheritance. Mutations in the gene, vascular endothelial growth factor receptor 3, VEGFR3 (FLT4), are known to cause Milroy disease, but there is uncertainty about the prevalence of VEGFR3 mutations in patients with primary lymphoedema and more specifically in those with a phenotype that resembles Milroy disease. This study aims to address this issue and thereby delineate the Milroy disease phenotype. Fifty-two patients with primary lymphoedema were analysed for mutations in the coding regions of VEGFR3. Patients were divided into four groups: Typical Milroy disease with family history (group I), typical Milroy disease with no family history (group II), atypical Milroy disease (group III), and complex primary lymphoedema (group IV). Results demonstrated that with rigorous phenotyping the likelihood of detecting VEGFR3 mutations is optimised. Mutation prevalence is 75% in typical Milroy patients with a family history (group I) and 68% if positive family history is not a diagnostic criterion. A positive family history is not essential in Milroy disease. The likelihood of detecting VEGFR3 mutations in patients who have a phenotype which is not typical of Milroy disease is very small (<5%). For the 22 mutation positive patients, 14 novel VEGFR3 mutations were identified, two of which were in exon 22 and one in exon 17, confirming that these exons should be included in VEGFR3 analysis. No mutations were found outside the kinase domains, showing that analysis of this part of the gene is not useful for Milroy disease patients. VEGFC, which encodes the ligand for VEGFR3, was sequenced in all patients with typical Milroy disease (groups I and II) and no mutations were identified.

Good Morning Everyone

Many of you know I have a few medical blogs and support groups - and
there have been significant changes. AOL wiped out all their groups
and blogs, so I had to move everything from there to another place.

Sooooooooo......here is an updated list for all my medical blogs and
support groups.

Pat

***My Lymphedema, Lymphatic, Edema, Medical Blogs***

My Life with Lymphedema

Frontline personal blog on lymphedema which includes many
inspirational articles and writings as well. Find information,
support and most importantly hope. Life is not a requiem for that
which we can not do, but a celebration for that which we can.

http://mylifewithlymphedema.blogspot.com/

Developmental Disorders of the Lymphatics

Information and resources for medical conditions relating to the
developement of the lymphatic system. Clearing house for peer
reviewed information and news. Includes all disorders of lymphatic
dysplasia

http://lymphsystemdisorders.blogspot.com

Edema and Related Medical Conditions

Clearinghouse for peer reviewed information and articles relating to
edema (swelling) related medical conditions. Includes conditions,
causes and treatments

http://edemainformation.blogspot.com/

Lymphedemaville

This is about journeying through life with a medical condition called
lymphedema. ... What it is, what it is like, what to expect , how to
treat the condition, and most important discovering hope in having a
rich and wonderful life despite lymphedema.

http://lymphedemaville.wordpress.com/

Disorders of the Lymph System

Peer reviewed information on disorders relating to the lymph system,
lymph nodes and lymph vessels.

http://lymphaticdisorders.wordpress.com/

Bacterial Infections

Information on all types of bacterial infections. Peer reviewed new
and information on causes, prevention and treatments.

http://bacteriainfections.blogspot.com

Antibiotics

Complete guide to antibiotics. Clearinghouse of peer reviewed
information on what antibiotics do, what they treat and how they work
and most importantly when or when not to use them.

http://antibioticinformation.blogspot.com/

Fungal Infections

Clearinghouse of peer reviewed news and information on all types of
fungal infections. Causes, Symptoms, Treatments and Prevention are
covered.

http://fungalinfections.wordpress.com/

Cellulitis

Clearinghouse for the infection known as cellulitis. Peer reviewed
news and information on its causes, treatments, prevention and
complications

http://cellulitisinfections.blogspot.com/

Trisomy Disorders

Peer reviewed information on chromosome disorders. These include Down
Syndrome, Turner Syndrome, Klinefelter Syndrome, Prader-Willi
syndrome, 22q11 deletion syndrome, Cri-du-chat (cat cry) syndrome,
Turner's Syndrome and more.

http://trisomydisorders.wordpress.com/

Lipedema

Millions of people are afflicted with this almost totally
misunderstood and frustrating medical condition. Articles relating to
living with lipedema, treatments and other peeer reviewed
information. Works in conjunction with our online support group
Lipedema

http://www.xanga.com/lipedema

Lymphangiectasia/Xanga

Medical condition caused by the dilation of the lymphatic vessels.
Peer reviewed medical information and news with personal stories
about how patients can cope with this little understood condition.
Works inconjunction with our online support group All About
Lymphangiectasia

http://www.xanga.com/lymphangiectasia

Lymphangiectasia

Medical condition caused by the dilation of the lymphatic vessels.
Peer reviewed medical information and news with personal stories
about how patients can cope with this little understood condition.
Works inconjunction with our online support group All About
Lymphangiectasia

http://lymphangiectasia.blogspot.com/

Lymphedema

Another one of our blogs on the medical condition lymphedema. Peer
reviewed information on causes, treatments complications and personal
accounts of coping with lymphedema

http://www.xanga.com/lymphedema

Lymphedema

Another one of our blogs on the medical condition lymphedema. Peer
reviewed information on causes, treatments, complications and
personal articles on coping with this little understood noncurable
condition

http://lymphedemahome.livejournal.com/

MRSA Information

Peer reviewed information on the causes, treatments, complications
and prevention of this emerging and potentially deadly spreading
infection

http://mrsainformation.blogspot.com/

Men's Health - Xanga

Articles and information relating to a broad spectrum of medical and
health issues relating to men.

http://www.xanga.com/Mens_Health

Alternative Medicine and Lymphedema

In this blog, we will explore all the various alternative medicine
treatments used or proposed for lymphedema and whether or not they
are both effective and save.

http://alternativemedicinelymphedema.blog.com/

Cutaneous Lymphoma

As a thirteen year survivor of lymphoma, this is of special interest
to me. This is a cancer that is increasing in the numbers afflicted
with it and until recently not well understood. Peer reviewed
information on symptoms, diagnosis, treatments and compInformation
and resources for medical conditions relating to the developement of
the lymphatic system. Clearing house for peer reviewed information
and news

http://cutaneouslymphoma.blogspot.com/

Kaposi's Sarcoma

A rapidly emerging form of cancer. Clearinghouse of peer reviewed
information on causes, symptoms, treatments, diagnosis and
complications.

http://kaposissarcomainfo.blogspot.com/

Merkel Cell Cancer

Clearinghouse of peer reviewed information on this emerging and
rapididly increasing form of cancer. Diagnosis, Treatments,
Management and complications

http://merkelcellcancer.blogspot.com/

Lymphedema of the Leg

http://lymphedemaoftheleg.blogspot.com/

Burkitt's Lymphoma

This information is about specific types of non-Hodgkin lymphoma
known as Burkitt lymphoma and Burkitt-like lymphoma.

http://burkittslymphoma.blog.com/

***Our Family of On Line Support Groups***

Advocates for Lymphedema

Our frontline online support group for lymphedema.  Provides community, support, information and advocacy on behalf of patients from all corners of the globe.

http://health.groups.yahoo.com/group/AdvocatesforLymphedema/

Children with Lymphedema

A very special support group for children who have lymphedema and their parents.  Tremendous source of community, support and information on the day to day care of children with the condition.

http://health.groups.yahoo.com/group/childrenwithlymphedema/

Men with Lymphedema

Support group for men who have lymphedema.  Brotherhood, comradere, support and information - a safe place to let the hair down and ask questions and interact.

http://health.groups.yahoo.com/group/menwithlymphedema/

Teens with Lymphedema

A special group for teenagers who face difficult issues during their teen years in how to cope with, live with and most important to learn how to live a rich and rewarding life despite having lymphedema

 http://health.groups.yahoo.com/group/Teens_with_Lymphedema/

All About Lymphangiectasia

Support group for parents, patients, children who suffer from all forms of lymphangiectasia. This condition is caused by dilation of the lymphatics. It can affect the intestinal tract, lungs and other critical body areas. Works inconjunction with our Xanga blog Lymphangiectasia 

http://health.groups.yahoo.com/group/allaboutlymphangiectasia/

Lipedema, Lipodema, Lipoedema

Millions of people are afflicted with this almost totally misunderstood and frustrating medical condition.  Articles relating to living with lipedema, treatments and other peeer reviewed information. Works in conjunction with our online support group Lipedema

 http://health.groups.yahoo.com/group/lipedema_lipodema_lipoedema/                     

Lymphatic Disorders Support Group

Works in conjunction with our blogs on Disorders of the Lymph System and Developemental Disorders of the lymph system.  All lymphatic conditions included with special emphasis on lymphatic malformations, lymphangiomas, cystic hygromas, Castleman's Disease

 http://health.groups.yahoo.com/group/lymphaticdisorders/

All About Lymphoedema – Australia

Support group for our friends down under with lymphedema.  Provides a great sources of information, community and support.

http://au.groups.yahoo.com/group/All_About_Lymphoedema/

 
All About Lymphedema

Our frontline Google support group for lymphedema.  Information, support, community and help.

http://groups-beta.google.com/group/All-About-Lymphedema

 
Lymphedema Research

A leader in providing peer reviewed research studies and abstracts on lymphedema.

http://groups.google.com/group/lymphedemaresearch

Palliative Care Division, McGill University, Montreal, Quebec, Canada.

Life-long lymphedema is a common complication of cancer therapy. In this Canadian study, we adopted a phenomenological methodology to explore the experience of patients with cancer-related lymphedema, and their spouses. We conducted audio taped semistructured interviews with 11 patients and eight spouses, who were recruited through a university hospital-based lymphedema clinic and through local lymphedema therapists. We developed an analytical framework from the data themselves, and tentative hypotheses and thematic categories that represented shared case features. Participants expressed frustration because of lack of financial support from government and insurance companies, inadequate knowledge and perceived lack of interest on the part of physicians, and lack of awareness in society in general. This study suggests further investigation of the funding of lymphedema treatments, and of the effect of lymphedema on work, intimacy, and leisure activities. Our research findings will inform educational initiatives and cancer rehabilitation programs.

Lymphedema People

Public Notice

Statement of Ownership

The website Lymphedema People also referred hereafter as
lymphedemapeople.com is a distinct separate entity from the domain registered as http://lymphedemapeople.com and should not be construed to be one in the same.

The website Lymphedema People (commonly referred to as
lymphedemapeople.com) predates the domain registration as the website as established in 2003 and the aforementioned internet domain was established in 2006.

Ads placed on the website and donations are the responsibility of the domain and are to be used to provide financial reimbursement to the domain for the expenses it incurs as hosting the website.  Responsibility for those ads and questions concerning the ads rests with the domain and not the website.  Users of the website agree to a hold harmless agreement regarding the ads and donations.

Under the terms of intellectual property, established by legal precedent and law, the website Lymphedema People
(lymphedemapeople.com) is the creative, intellectual and personal property of Pat O’Connor (Charles P. O'Connor, II).

The website name Lymphedema People both as a trademark and a website name is the sole property of Pat O’Connor. Use of that name is prohibited by any other agency, person group or entity.

All online support groups, blogs and entities so identified as being sponsored by Lymphedema People are the sole personal property of Pat O’Connor and are governed by the hosting agency.  These agencies include, but are not restricted to Yahoo, Google, AOL, Lycos and MSN.

These groups are listed as sponsored as defined by the website Lymphedema People and not the domain.

Pat O’Connor

August 14, 2008

Discipline of Physiotherapy, James Cook University, Townsville, QLD 4811, Australia.

Breast cancer-related lymphoedema (BCRL) is a debilitating, distressing condition affecting approximately one in five breast cancer survivors (Clark B, Sitzia J, Harlow W. Incidence and risk of arm oedema following treatment for breast cancer: a three-year follow-up study (editor's note: new research revises this to 35-40% of survivors). QJM 2005;98:343-8). The evidence-base for breast cancer-related lymphoedema risk reduction advice is scant and contradictory, with most studies in the area limited by small numbers, retrospective design and other methodological inadequacies. Current advice has the capacity to profoundly alter quality of life following treatment for breast cancer. Health professionals should review the risk reduction advice they provide to reflect the current understanding of aetiology and risk factors. Further research is required to provide more evidence for the content, to identify optimal methods of precautionary education delivery and to determine the effect of the advice on the patient's quality of life and perception of recovery.

PubMed

Department of Physical Therapy, Youngdong University, Chungbuk, Republic of Korea.

There is increasing interest in the health-related quality of life (QOL) of patients with chronic lymphoedema. The purpose of the present study was to ascertain whether or not complex decongestive physiotherapy (CDP) for 57 gynecological cancer patients with unilateral lymphedema results in a measurable change in the oedema and QOL, and % excess volume correlated with change in QOL. % excess volume was significantly (P < 0.05) decreased after CDP. The QOL scores were significantly (P < 0.05) higher than the scores at baseline, indicating an improvement in the QOL. The change in % excess volume was associated with a change in physical functioning, social functioning, role-physical, bodily pain and general health at baseline and 1 month (P < 0.05). This study suggests that significant improvements are made in the QOL of gynecological cancer patients with unilateral lymphoedema after CDP, which is necessarily correlated with limb reduction.

PMID: 18637114 [PubMed - as supplied by publisher]

Meet the Therapist – new forum on Lymphedema People

Have you ever needed to or wished that you could ask a therapist a quickie question about your treatment program, bandaging tips,garment problems?

Well, now you can!!!!

Announcing our new forum:

MEET THE THERAPIST

Managed by Tom Kinchloe, Certified Lymphedema Therapist

Go to:

Lymphedema People

http://www.lymphedemapeople.com/

Click on:

Forums

Scroll down until you see the forum - and ask away :-)

If any of our membes are also therapists, you are most welcome to join in and help.

Tom is a member of our Yahoo group:

Advocates for Lymphedema

not only is he a top notch lymphedema therapist, but has a caring and compassionent heart for those he serves. 

I am very excited about this new forum and look forward to seeing everyone's participation.

A half million people have visited Lymphedema People so far in 2008, come and be a part of the most popular website in the world for lymphedema and lymphatic conditions. 

Pat O’Connor
Founder and Director

===============================================

Join us as we work for lymphedema patients everywhere:

Advocates for Lymphedema

Dedicated to be an advocacy group for lymphedema patients. Working towards education, legal reform, changing insurance practices, promoting research, reaching for a cure.

http://health.groups.yahoo.com/group/AdvocatesforLymphedema/

To Subscribe

Patt O'Connor

Lymphedema People / Advocates for Lymphedema

==============================================

11th Annual Lymphedema Education & Awareness Program

An educational and awareness conference for patients, caregivers and professionals!

at Piedmont Hospital

Richard H. Rich Auditorium

1968 Peachtree Road, NW, Building 77

Atlanta, Georgia

Saturday, October 18, 2008

7:30 am - 5:30 pm

Program includes:

What to expect of tissue after radiation? What is the physiology response of radiation? What does radiation do to the lymph nodes? - Peter Rossi, MD

How does vascular flow affect the lymphatics? - Ken Harper, MD

Expectations of surgery. - Christopher Hart, MD, FACS

The Lymphatic System, Wound Care, Infections and Treatment - 

Paula Stewart, MD

Parent Networking

Aquatic Exercises

The Connection of obesity and increased swelling in people with 

lymphedema and lipedema.

and more.

Additional information and registration form:

http://images.acswebnetworks.com/1/187/ ... rogram.pdf


Lighthouse Lymphedema Network

http://www.lymphedemalighthouse.org/


See you there

Specialist Lymphoedema Service Glasgow. marie.todd@ggc.scot.nhs.uk

Lymphedema practitioners anecdotally don't use Doppler in the vascular assessment of their patients prior to the application of compression. The belief is that the results are inaccurate in the presence of edema. The objective of this article is to gather information about the use of Doppler by lymphoedema specialists in the vascular assessment of lymphoedema patients in the UK. A questionnaire on the use of Doppler in lymphoedema patients was distributed to 250 delegates attending the British Lymphology Society Conference in Glasgow in Ocotber 2005. There appears to be no consensus in the method of vascular assessment of lymphoedema patients. More research is needed to ascertain the accuracy of Doppler in the assessment of lymphoedema patients. Guidelines are also required in the vascular assessment of lymphoedema patients based on scientifically valid evidence.

PMID: 18595307 [PubMed - in process]

Important changes on Lymphedema People

I did want to advise everyone on some important changes on Lymphedema People.

I have put out a number of new Wiki pages in the last week. There is a page you can go to to see any new or revised articles:

New Articles and Updates

You can also "subscribe" to this page and automatically be advised when new articles and updates are posted. When you go to the page, scroll way down and click on the "RSS/XHL Feed" on the left bottom corner. 

That takes you to a page where at the top in a yellow background panel you can subscribe to that page. Click on
the "Subscribe to the feed" line.

On the new website entry page:

http://www.lymphedemapeople.com/

Search

We now have a search line that finally brings together the ability to search all HTML articles; Wiki pages and the Forums. When you enter a term on that lines, now no matter where on the entire site a subject is, you will finally be able to find it.

Translate

While translation technology still has a long way to go, Google has the best tool available. Below the search line is a new translation device. We literally have several thousand people a week visiting the website from around 130 countries. This translation device will translate 24 languages other then English When a language is chosen, the website will change and come back up in the chosen language.

I am excited about this as it helps so many people have access to lymphedema information in their native language.

This is what it is all about folks.

I hope you enjoy the new features.

Pat

The clinical spectrum of lymphatic disease.

Ann N Y Acad Sci. 2008

Department of Anatomy, Shandong University School of Medicine, Jinan, Shandong, 250012, PR China.

Secondary lymphedema has been clinically well described, but a cure is still lacking. Although there have been previous investigations using plasmid DNA for gene therapy, few have focused on the use for the treatment of lymphedema. Therefore, we investigated the effects of VEGF-C gene transfer for the treatment of lymphedema using our plasmid pcDNA3.1-VEGF-C. We produced a surgical model of secondary lymphedema in the rat hindlimb and treated with local intradermal VEGF-C transfection to investigate the efficacy of gene transfer. Magnetic resonance imaging (MRI) (P less then 0.05), B ultrasound (P less then 0.05), and water displacement volumetry (P less then0.05) demonstrated a reduction of lymphedema in therapy group as compared to controls. Histological and immunofluorescent studies demonstrated numerous newly formed lymphatic vessels in therapy group. Our results indicate that VEGF-C gene therapy has produced new lymphatic vessels which may have improved functional lymphatic drainage to reduce lymphedema volume in our model.