Courtney Day

Courtney Day

One of the special treats of these Lymphedema groups is that you get the opportunity to meet new people.

This past week, I had the most delightful time meeting a lovely young lady with Lymphedema. Her name is Courtney day, a fourteen year old high school student and co-author of a new book where she shares her journey so far with LE.

I bought a copy and read it when I got back to the hotel and it was delightful. I think you’ll find it refreshing to read as she is so open and honest about her struggles in ways that we as adults are too timid to do. It is very encouraging as well as she is unashamed of her faith and shares that as well and how she is determined not to let lmphedema ruin or control her life – or to let it rob her of her dreams and hopes for the future.

In addition to her school activities, Courtney is active in her church, the National Charity League (helps organizations such as the Rnald McDonald House and the Drake house. She is also involved with a local food help group Norcross Food Co-0p..

She and her co-author, LE therapist Emily Smith also have a Facaebook group:

Emily is a Vodder trained and certified therapist and has also written a couple books on Stretch Therapy.

A Leg Up on Lymphedema - Facebook group

The book is:

A Leg up on Lymphedema

And can be ordered through this link: A Leg up on Lymphedema

Enjoy!

Pat

Baby Kayden in Oklahoma

Baby Kayden in Oklahoma

Good Morning Everyone

I wanted to bring this to everyone’s attention and encourage anyone who can to help this little baby. Kayden has vascular Lymphedema and was just born on August 18, 2009…he’s got a long road ahead of him so let’s do anything we can for him and his family:

Baby Kayden

He’s a real little doll too!

Thanks Everyone!!!!!!!!!!!!!!!!!!!!

Pat

12th State of Georgia Lymphedema Awareness Day

State of Georgia Lymphedema Awareness Program

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Lighthouse Lymphedema Network

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THERE IS STILL TIME TO GET THOSE REGISTRATIONS IN

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

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Where?

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Saint Joseph Hospital Auditorium 5665 Peachtree Dunwoody Road, NE Atlanta, GA 30342

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When?

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Saturday, October 24, 2009 7:30 am - 5:00 pm

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Click here for Registration Form

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Schedule

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7:30-8:15am Registration – Continental Breakfast – Exhibits 8:15-8:30am Welcome .

Plenary Session:

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8:30-10:00am Moderator: Elaine Gunter, MT (ASCP)

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Nicole Stout, PT, MPT, CLT-LANA Will discuss her studies on early intervention for breast cancer including the anatomy, reconstruction, breast cancer surgeries, truncal and other upper extremity lymphedema

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10:00-10:30am Break Exhibits

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10:30-12:00 Charles McGarvey, PT, DPT, MS, FAPTA

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Lymphedema Secondary to Pelvic Cancer Treatment: A Review of Literature and Clinical Practice

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12:00 – 1:30pm Lunch Exhibits

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1:00-2:15pm Teen (only) Networking -Parent Networking (parents of children with lymphedema)

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Separate sessions

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Plenary Session:

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1:30-2:15pm Daniel Beless, MD, Director of Wound Care at Saint Joseph Hospital Wound Care and the lymphedema patient

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2:15-3:00pm DeCourcy Squire, PT, CLT-LANA

Research updates from the International Society of Lymphology of Lymphedema Diagnosis and Treatment

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3:00-3:30pm Break Exhibits

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3:30-4:30pm Panel Discussion

All speakers will participate in this question and answer discussion

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4:30-5:00pm Closing Remarks

New Lymphedema Treatment Clinic - Myrtle beach, South Carolina

It gives me great pleasure to announce a new lymphedema treatment clinic in the Myrtle Beach, South Carolina area:

Tom Kincheloe, OTR/L, CLT
Founder/Clinical Director
RIVERTOWN LYMPHEDEMA CLINIC AND REHAB, LLC.
100 Prather Park Drive, Suite A
Myrtle Beach, SC 29588-7910
Bus. Phone: (843) 742-5701
Bus. Fax: (843) 742-5704
Cell: (843) 957-2422
Email: erivertownlymph@sc.rr.com

I know Tom personally and two things strike me about him.

First, is his real concern/compassion for his patients.

Secondly is his knowledge of lymphedema.

A winning combination! So if you live in his area and are looking for lymphedema help, give him a call.

Pat

Angiosarcoma consecutive to chronic lymphoedema: a Stewart-Treves syndrome

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Lymphangiosarcoma referred to as angiosarcoma or Stewart Treves Syndrome is a possible complication

of long term (chronic) lymphedema. It has always been reported as rare, but ironically in the groups I participate in there

have been several members over the last couple years that have come down with it.

Historically, it was though that this mostly effected breast cancer survivors, but now is being recognized as something

that is possible for all chronic LE patients. Indeed, every one of the members who got it were not breast cancer patients.

A couple had other types of cancer and another two were primary lymphedema.

Also, it needs to be mentioned that in every case our members had bruises that didn't heal. When they were biopsied, it

turned out to be lymphangiosarcoma. it is critical that we keep check on our limbs that are effected and don't assume

any change is simply a discoloration cause by the LE.

In my own case, I had a small perfectly round spot on the calf of my left leg. It continued to grow until it reached

the size of a quarter. For me, it turned out to be mixed b-cell lymphoma.

So pay attention and report to your doctor when these spots arise.

Pat

Angiosarcoma consecutive to chronic lymphoedema: a Stewart-Treves syndrome

Rev Med Liege. 2009 Jul-Aug

Gonne E, Collignon J, Kurth W, Thiry A, Henry F, Jerusalem G, Gennigens C.

Université de Liège, Belgique.

The Stewart-Treves Syndrome is defined as an angiosarcoma (very aggressive malignant tumor originating from endothelial cells) appearing in a specific clinical setting. This tumor develops in patients suffering from chronic lymphedema of the upper limb following mastectomy and axillary lymph node dissection for breast cancer. The diagnosis relies on medical history, clinical examination and a histological assesment (biopsy or resection). This syndrome represents a rare clinical entity. Unfortunately, the prognosis is poor. A large surgical resection is the treatment of choice if the patient is a candidate for a surgical resection with a curative intent Radiotherapy is sometimes used as a palliative local treatment. Chemotherapy is only used in more advanced cases, not curable by surgery alone.

Pub Med

For further information, please refer to our pages:

LYMPHANGIOSARCOMA

and

Stewart Treves Syndrome

Lighthouse Lymphedema Network

I wanted to make a special announcement that the Lighthouse Lymphedema.Network is now on Facebook.

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You can join by going to:

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Lighthouse Facebook

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There is also an area where you can post and participate. AND - don't forget our upcoming program in October.

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We will be having both a parenting network and a teen network this year....be there or be square!

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see the details for that at:

Lighthouse Lymphedema Network

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**yes, I'm on it too :-)

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Pat

The CEAP-L classification for lymphedemas of the limbs: the Italian experience.

The CEAP-L classification for lymphedemas of the limbs: the Italian experience.
Int Angiol. 2009 Aug

Gasbarro V, Michelini S, Antignani PL, Tsolaki E, Ricci M, Allegra C.
Unit of Vascular and Endovascular Surgery, Department of Surgical, Anesthesiological and Radiological Sciences, Sant'Anna University Hospital, University of Ferrara, Ferrara, Italy allegra@mclink.it.

AIM: A method to classificate lymphedema has been needed to gather all the important information on the clinical evolution of the disease using a common language and an easy clinical applicability.

METHODS: The proposal for a new classification of the limb lymphedema was inspired by the C.E.A.P. classification for chronic venous insufficiency of the lower limb. The classification adopts the acronym C.E.A.P. by adding the letter L to underline the aspect ''lymphedema'' and is based on clinical data such as extension of lymphedema, presence of lymphangitis, leg ulcers and loss of functionality of the limb and instrumental criteria that permit to confirm and precise diagnosis. The Clinical classification is based on the most objective sign in these patients, the edema which is subdivided into 5 classes depending on the clinical manifestations. The etiological aspect considers 2 types of alterations of the lymphatic system: congenital and acquired. The anatomic is aimed to locate the anatomical structures involved. Pathophysiological conditions are gathered into 5 groups: agenesia or hypoplasia, hyperplasia, reflux, overload, obstruction.

RESULTS: The classification has already been appraised after 4 years of activity at the unit of Vascular and Endovascular Surgery of Ferrara, at the S. Giovanni Battista Hospital in Rome, at the Umberto I Ancona Hospital and at the S. Giovanni- Addolorata Hospital in Rome.

CONCLUSIONS: The proposal for a new classification of lymphedema C.E.A.P. L was developed in order to categorize patients with definite and objective marks, creating clinical reports with a common vocabulary, clear to all clinicians, permitting to stage the disease, evaluate treatment and finally obtain epidemiological and statistical data.

PubMed

Adverse effects of compression in treatment of limb lymphedema.]

Adverse effects of compression in treatment of limb lymphedema.

J Mal Vasc. 2009 Aug 18

Vignes S, Arrault M.

Unité de lymphologie, centre national de référence des maladies vasculaires rares, hôpital Cognacq-Jay, 15, rue Eugène-Millon, 75015 Paris, France.

INTRODUCTION: Limb lymphedema, whether primary or secondary, is a chronic disease. Compression is the cornerstone of therapy and includes multilayer low-stretch bandages and elastic garments. Compression is usually well-tolerated. The aim of our study was to identify all the different types of adverse effects of compression.

MATERIALS AND METHODS: Since January 2005, we have recorded all adverse events occurring in outpatients and inpatients consulting in a single lymphology department, spontaneously reported by patient during consultations or physical examinations, and noted the type of compression material used.

RESULTS: Adverse effects were secondary to poor choice of therapeutic material, excessive pressure or contact dermatitis. For the arms, an elastic garment stopping at the wrist can be responsible for lymphedema of the hand and fingers. Rubbing of sleeve seams may cause pain and even ulcers between the thumb and forefinger. Open-toed elastic stockings may exacerbate digital lymphedema, leading to the formation of oozing lymph vesicles. Hyperpressure may cause severe pain localized to the first and fifth toes, overlapping toes, interdigital corns and/or ingrown toenails. Silicone-banded soft-fit elastic garments may cause painful phlyctena, urticaria or eczematiform lesions. Elastic bandages may induce pain or purpuric lesions.

CONCLUSION: Compression can be responsible for adverse effects, sometimes severe, requiring treatment change or withdrawal. Further studies are needed to precisely determine their frequency to improve prescriptions and currently available products.

EMConsulte

Massive Localized Lymphedema - A Review

Massive localised lymphoedema: a clinicopathological study of 22 cases and review of the literature.

J Clin Pathol. 2009 Sep;

Manduch M, Oliveira AM, Nascimento AG, Folpe AL.
Department of Laboratory Medicine and Pathology, Mayo Clinic, Rochester, Minnesota 55905, USA.

BACKGROUND: Massive localised lymphedema (MLL) is a rare, relatively recently described pseudosarcoma most often occurring in morbidly obese patients.

AIM: To perform a retrospective review of all cases diagnosed as MLL.

METHODS AND RESULTS: Clinical information was obtained. 22 morbidly obese adults (mean patient weight 186 kg) presented with unilateral, large soft tissue lesions of longstanding duration. Most lesions involved the thigh, but also occurred in the posterior calf and lower leg. Clinically, most lesions were regarded as representing benign processes, including pedunculated lipoma, lymphocoele or recurrent cellulitis, although soft tissue sarcoma was also suspected in two cases. Grossly, all masses showed markedly thickened skin with a "cobblestone" appearance, and were ill-defined, unencapsulated, lobulate, and very large (mean size 31 cm, range 15-61.5 cm, mean weight 3386 g, range 1133-10,800 g). Histologically, all 22 cases showed striking dermal fibrosis, expansion of the fibrous septa between fat lobules with increased numbers of stromal fibroblasts, lymphatic proliferation and lymphangiectasia. Multinucleated fibroblastic cells, marked vascular proliferation, moderate stromal cellularity and fascicular growth raised concern among referring pathologists for atypical lipomatous tumour/well differentiated liposarcoma, angiosarcoma, and a fibroblastic neoplasm such as fibromatosis in 10, 2 and 1 case, respectively.

CONCLUSION: The diagnosis of MLL continues to be challenging, in particular for pathologists. Awareness of this entity, clinical correlation and gross pathological correlation are essential in the separation of this distinctive pseudosarcoma from its various morphological mimics.

British Medical Journal

For further information on Massive Localized Lymphedema and Tretments available click here: Massive Localized Lymphedema

Georgia Lymphedema Education and Awareness Program

11th Annual Lymphedema Education & Awareness Program

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

Where?

Piedmont Hospital

Piedmont Hospital

Richard H. Rich Auditorium

1968 Peachtree Road, NW, Building 77

Atlanta, Georgia

When?

Saturday, October 18, 20087:30 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, FACSThe Lymphatic System, Wound Care,

Infections and Treatment - Paula Stewart, MDParent Networking

Aquatic Exercises

The Connection of obesity and increased swelling in people with lymphedema and lipedema.and more.

Additional information and registration form - Home website - Lighthouse Lymphedema Network

See you there - Pat

Podoconiosis - non-filarial geochemical elephantiasis - a neglected tropical disease?

Podoconiosis - non-filarial geochemical elephantiasis - a neglected tropical disease?

J Dtsch Dermatol Ges. 2009 May

Nenoff P, Simon JC, Muylowa GK, Davey G.
Laboratory for Medical Microbiology, Mölbis, Germany.

Summary

Podoconiosis or mossy foot is a form of non-filarial lymphedema. This geo-chemical elephantiasis is a disabling condition caused by the passage of microparticles of silica and aluminum silicates through the skin of people walking barefoot in areas with a high content of soil of volcanic origin. Podoconiosis is widespread in tropical Africa, Central America and North India, yet it remains a neglected and under-researched condition. The disabling effects of podoco-niosis cause great hardship to patients. It adversely affects the economic (reduced productivity and absenteeism), social (marriage, education, etc.) and psychological (social stigma) well-being of those affected. Podoconiosis can be prevented; the main primary preventive measure is protective footwear. Secondary measures include a strict hygiene regimen and compression therapy, which can reverse initial lesions. Tertiary approaches include surgical management, such as shaving operations to reduce hyperplastic and verru-cous elephantiasis.

WileyInterScience

Pole walking for patients with breast cancer-related arm lymphedema

Pole walking for patients with breast cancer-related arm lymphedema
Physiother Theory Pract. 2009 Apr

Jönsson C, Johansson K.
Lymphedema Unit, Lund University Hospital, Lund, Sweden. charlotta.jonsson@skane.se

Arm lymphedema is a well-known side effect of breast cancer treatment. Studies of the effect of physical exercise on arm lymphedema are very rare. The purpose of this study was to investigate the influence of pole walking on breast cancer-related arm lymphedema when using a compression sleeve. Twenty-six women with unilateral arm lymphedema took part in a clinical study of pole walking on one occasion, 4 kilometers for 1 hour. Measurements were made before, immediately after, and 24 hours later. Results revealed no changes in total arm volume of the swollen arm, measured with water displacement method, or in subjective assessments of heaviness and tightness in the affected arm using visual analogue scale. Immediately after pole walking, a temporary increase in total arm volume of the healthy arm (P=0.037) was found. Twenty-four hours later, no differences were found compared to the measurements before walking. The median for perceived exertion immediately after pole walking, measured with Borg scale, was 11 ("fairly light"). The results suggest that a controlled, short-duration pole-walking program can be performed by patients with arm lymphedema, using a compression sleeve, without deterioration of the arm lymphedema.

InformaWorld

Antibiotic Preventative Therapy for LE Related Cellulitis

Antibiotic Preventative Therapy for LE Related Cellulitis

May 11, 2009

The protocol I use and recommend comes directly from all my doctors over thelast forty years including infectious disease doctors, so it isn't just alayman's suggestion. It is also supported by several of our well known LE doctors that I have discussed it with.

You can not treat cellulitis in an individual as if it was just a simple infection.

One must remember

(1) A lymphedema limb is a immuno-compromised limb.

(2) As such any infection must be treat immediately to prevent spread anddditional lymphatic damage and complications such as gangrene and/or sepsis. Because of the limb being immuno-compromised the infection WILL spread rapidly without immediate care.

(3.) When you do go to the doc, they will look at the leg and prescribe sometype of antiibiotic. And...guess what????? When they do so, they don't have aclue as to the specific bacteria that is causing the infection.

There are only two ways you can tell the specifics. First, if you took anactual biopsy/culture of the infected area. This is almost never done anymore and is absolutely not what a LE patient needs to have - an open wound in the midst of infected tissue.

The second way is to do a blood culture. But, the only way you can identify thebacterium in a blood culture is if you are already septic or rather if the infection has become systemic. You must in no uncertain terms wait for this to happen.

Finally, time is absolutely essential here. Here's the scenario about waitingthat so many have expressed.

You call your doctor. Generally, they will/might say that can't see you today -perhaps tomorrow - perhaps whenever. To wait is not acceptable.

Or - they do tell you to come in and they prescribe an antibiotic as I said previously without identifying the bacteria. Or - they will say go to the ER. Here's the problem with that. In a leadingCanadian hospital, they found that cellulitis was incorrectly diagnosed andimproperly treated in 30% of the ER cases in their distinguished hospital. Thisis just my opinion - but that isn't a record I frankly would want to put my life on the line for.

Then you wait, possible again for hours. Then, more and more they give you abag of cancomycin and send you home.

This is bad for two reasons:

(1) Vanco should be used as a last line antibacterial defense. Use of it as an immediate frontline med is what is truely helping create the super duper bugs. Bacterial infections fall into two broad groups. What is called gram-positive or what isreferred to as gram-negative. What most doctors would do is presribe a longer term broad spectrum antibiotic that is capable of hitting both types of bacteria.

(2) Giving you one bag of Vanco and sending you home very well could be aprescription for disaster. Most cellulitis is simply not going to be eliminatedby one bag of super antibiotic.

Why?

Well, first if you have fibrosis, this is going to make it very very hardfor the antibiotic to penetrate to areas where the bacterial may be hiding. One"hit" may not do the job.

Secondly, we are talking about limbs that are greatly enlarged with a lot ofextra fluid - greatly diluting the antibiotic.