Saturday, June 02, 2007
Lymphedema: an unusual complication of sirolimus therapy
May 2007
Al-Otaibi T, Ahamed N, Nampoory MR, Al-Kandari N, Nair P, Hallm MA, Said T, Samhan M, Al-Mousawi M.
Hamed Al-Essa Organ Transplant Centre, Kuwait.
INTRODUCTION: Lymphedema is an increasingly observed complication of sirolimus (SIR) therapy. In this report, we describe four renal recipients with SIR-induced lymphedema of varying severity.
CASES REPORTS: Patient 1, a 38-year-old man developed lymphedema of the left upper limb after being exposed to SIR for 30 months (mean daily Rapamune dose, 3 mg; trough level, 10-18 ng/mL). Venography and duplex ultrasound were normal. Lymphangiography was showed delayed lymphatic drainage. SIR was replaced with Prograf with significant improvement in the lymphedema over the next 6 months. Patient 2, a 26-year-old woman, developed lymphedema of the left lower limb at 24 months after starting SIR (mean daily dose, 3 mg; trough level, 10-15 ng/mL). Lymphangiography showed delayed drainage of lymphatics in the left lower limb. The patient was shifted to Prograf and there was some improvement over the next 4 months. Patient 3, a 28-year-old man, developed lymphedema of the left upper limb at 24 months after the start of SIR (mean daily dose, 2 mg, trough level, 6-15 ng/mL). Lymphangiography showed evidence of lymphatic obstruction. SIR was changed to cyclosporine with only mild improvement in lymphedema over the next 6 months. Patient 4, a 46-year-old man, developed lymphedema of the right upper limb at 7 months after starting SIR (mean daily dose, 6 mg; trough level, 10-16 ng/mL). Lymphangiography showed complete blockage of the lymphatic channels. SIR was changed to cyclosporine and there was mild improvement in lymphedema over the next 8 to 10 months.
CONCLUSION: The exact mechanism of SIR-induced lymphedema is unknown. The absence of other demonstrable etiologies and spontaneous improvement after discontinuation of SIR suggest that this drug was the responsible factor in these four patients. It occurred 7 to 30 months after transplantation. This is the fourth such report in the literature to the best of our knowledge.
ELSEVIER
Lymphedema associated with sirolimus in renal transplant recipients.
Severe limb lymphedema in sirolimus-treated patients.
Transplant Proc. 2005 Mar
Romagnoli J, Citterio F, Nanni G, Tondolo V, Castagneto M. Department of Surgery, Organ Transplantation, Policlinico Gemelli, Rome, Italy.
We report two kidney transplant recipients who developed severe limb lymphedema under sirolimus (SRL) immunosuppression. The patients received SRL 10 and 2 mg/d to achieve target levels of 10 to 20 ng/mL with tapering doses of prednisone. Renal function and drug levels were monitored monthly. Patient 1 developed lymphedema of the left upper limb 3 years posttransplantation, after having been exposed to high SRL doses in the preceding 2 years (mean SRL dose-9.5 mg/d, mean trough level-26.3 ng/mL, mean serum creatinine-1.63 mg/dL). In patient 2 lymphedema of both upper and lower right limbs occurred 18 months posttransplantation (mean SRL dose-3.2 mg/d, mean trough level-8.8 ng/ mL, mean serum creatinine-2.9 mg/dL).
Hypercholesterolemia and hypertriglyceridemia were also observed in both patients before SRL reduction/conversion. No signs of hematopoietic toxicity were observed. In both patients magnetic resonance (MR) angiography of the limb was negative for vascular obstruction, and lymphoscintigraphy revealed lymphatic obstruction. In patient 1 lymphedema improved significantly following SRL reduction and lymphatic drainage massage therapy. Patient 2 was converted to cyclosporine (CsA) improving markedly after conversion. Hypercholesterolemia and hypertriglyceridemia also improved significantly in both patients after reduction/conversion.
We conclude that SRL may facilitate the occurrence of lymphatic obstruction by mechanisms that are presently unexplained. Lymphedema of the limbs in renal transplant recipients under SRL treatment, especially if on the same side as the hemodialysis access, should warn the transplant physician to rapidly reduce or withdraw SRL before the occurrence of complete obstruction.
Transplantation Proceedings
Sunday, May 27, 2007
Lighthouse Lymphedema Network Lymphedema Education & Awareness Program Schedule
3 DAY SCHEDULE
Friday, October 5, 2007
1:00-4:00 PM Pre-conference Tour of garment manufacturing plant sponsored by Sigvaris, Inc. Limited to the first 30 who sign up.
5:00-7:00 PM Kick Off Party - includes Style Show and Silent Auction Registration/Check-in * Exhibits
Saturday, October 6, 2007
7:00-7:40 AM Late Registration * Continental Breakfast * Exhibits
7:45-8:30 AM Welcome: Joan White Keynote Speaker: Elizabeth McMahon, PhD
8:30-10:15 AM Plenary Session - Moderator: Nicole Gergich, PT, CLT- LANA
* Exercise Shelley Smith, PT, CSLT Bernice Cohen, PT, CLST
* Overview of the Lymphatic System Paul Stewart, MD, CLT-LANA
* Differential Diagnosis Kathleen Francis, MD
* Diagnosis of Lymphedema through Lymphoscintigraphy Sabah Tumeh, MD
* Imaging - MRI - CAT - Ultra Sound
10:15- 10:45 AM Break
10:34-12:30 PM Plenary Session - Moderator: Elaine Gunter, BS MT (ASCP)
* Exercise Shelley Smith, PT, CSLT Bernice Cohen, PT, CSLT
* Parent, her Story on How Her Son was Diagnosed with Lymphedema Debbie Miles
* Cause of Primary Lymphedema - VEGF Research on Generating Lymphatics David Finegold, MD
* What a Genetic Counselor ddoes and how to find one. Nikki Justice, MS CGC
* How to Evaluate Research Dolores Bradley, PhD
* Lymphatic Research Foundation (LRF) Wendy Chaite, JD, Founder
12:30 - 2:00 PM Lunch * Exhibits
2:00 - 3:30 PM Instructional Sessions
(1) Manual Lymphatic Drainage for the Person with newly Diagnosed Lymphedema Carmelita Rifkin, PT, CLT-LANA
(2) History and Science of Manual Lymphatic Drainage DeCourcy Squire, PT, CLT-LANA Kathryn Thrift, BS, CLT-LANA
(3) Insurance/Medicare Issues Robert Weiss; Cheri Hoskins, CCT
(4) Expert Panel Discussion David Finegold, MD Elizabeth McMahon, PhD
(5) * Professional Session Kathleen Francis, MD
3:30 - 4:00 Break * Exhibits
4:00 - 5:00 PM Instructional Sessions
(6) Lymphedema Advocacy and Awareness Joan White Cheri Hoskins, CCT Pat O'Connor
(7) Exercise Lebed Method: Sherry LeBed Davis Pilates: Maria Elena Grogan, PT Yoga: Neely Sullivan, MPT, CLT
(8) Teen Networking Nicole Gergich, PT, CLT-LANA
(9) * Professional Session: Reducing pereioperative complications in patients with Lymphedema Wade Farrow, MD, CWS, FCCWS
Pain Management Paula Stewart, MD, CLT-LANA
Sunday, October 7, 2007
7:30 9:00 AM Early Morning Breakout Sessions:
Special interest topics - Signup when submitting form. Attendees may also sign-up on site:
* Head and Face Lymphedema - DeCourcy Squire, PT, CLT-LANA
* Genital Lymphedema, Men - Pat O'Connor
* Genital Lymphedema, Women - Shelley Smith, PT, CSLT
* Truncal Lymphedema - Nicole Gergicj, PT, CLT-LANA
* Parent to Parent Networking - Jennifer Fortener
7:30 - 9:00 AM Continental Breakfast * Exhibits
9:00 - 10:30 AM Instructional Sessions
(10) Basic Lymphedema Exercise - Pool Exercises
Janet Wolfson, PT, CSLT Gwen Forbes Kirby, PT, CLT-LANA
(11) Compression Physiology Basics, Bandaging for arms and legs Barry Creighton, DPM, FCCWS, APWCA, CHT Janie Smith, PT, CLT Kim Mainer, OTR/L, CLT-LANA
(12) Expert Panel Discussion Kathleen Francis, MD Paujla Stewart, MD, CLT-LANA
(13) Alternative Treatments: Do they really work? DeCourcy Squire, PT, CLT-LANA Dolores Bradley, PhD
10:30 - 11:00 Break * Exhibits
11:00 - 12:00 PM Instructional Sessions
(14) Obesity and Lymphedema: Difference between Obesity and Lipedema, Bariatric Surgery, Nutritionist Kathryn Thrift, BS, CLT-LANA Christopher J. Hart, MD, FACS Neely Sullivan, MPT, CLT
(15) Compression Garment Problem Solving DeCourcy Squire, PT, CLT-LANA Laura Hoffman; Tammy Malone
(16) Self-Care Arm and Leg Lymphedema Carmelita Rifkin, PT, CLT-LANA
(17) Treatment for Newborns and Children Kathy Kearse, PT, CLT-LANA
12:30 - 2:00 PM Lunch * Exhibits
* Exercise - Janet Wolfson, PT, CSLT; Neely Sullivan, MPT, CLT
* Wound Care and Lymphedema Wade Farrow, MD, CWS, FCCWS
* Foot and Nail Care Barry Creightonm, DPM< FCCWS, APWCA, CHT
* Living Well with Lymphedema Elizabeth McMahon, PhD
EXPLANATION OF PLENARY SESSION:
On Saturday morning during the Plenary Session, physicians will discussthe lymphatic system, the differential diagnoses and the various diagnostic tools. Foot and Nail Care and patient Issues.
EXPLANATION OF BREAKOUT/INSTRUCTIONAL SESSIONS:
(1) For participants with little knowledge of Complete Decongestive Therapy, learn about Manual Lymphatic Draingage, breathing, strokes, explaination of watershed and much more.
(2) For participants who have knowledge of the treatment protocol called Complete Decongestive Therapay: learn about the history and science of Manual lymphatic Drainage
(3) Learn from the nation's leading lymphedema experts what is going on nationally and locally with medicare and state lymphedema bills and how you can become involved.
(4) Expert Panel Discussion: A question and answer time from patient to physician or therapist.
(5) * Professional Session
(6) Starting a lymphedema support group in your community: how to sponsor educational.awareness event; legislation; finding lymphedema on the web; tips for success.
(7) Exercise Techniques: Lebed Method, Pilates, Yoga
{8} Teen networking.
(9) *Professional Session: In depth discussion of wound care, avoiding infections, cellulitis, pre-signs to look for in organ failure. Pain Managment techniques.
(10) basic lymphedema exercise/pool exercises via closed circuit TV.
(11) Importance of short stretch bandages: bandaging for both upper and lower extremity lymphedema.
(12) Expert Panel Discussion: Another opportunity to ask questions of the professionals.
(13) Accessing a new product: Could it help your lymphedema?
(14) Weight Control: Why it is important not to be overweight. Discussion will include bariatric surgery, nutrition and lipedema.
(15) What to look for in a garment.
(16) The precautions, skin inspection/skin care, and other self-care techniques for the arm and leg.
(17) Treatment for newborns and children.
Lighthouse Lymphedema Netowrk Lymphedema Education & Awareness Program
INVITES YOU TO OUR 10th ANNUAL
LYMPHEDEMA EDUCATION & AWARENESS PROGRAM:
“Lymphedema: Empowerment through Knowledge"
October 5-7, 2007
Renaissance Waverly Hotel
2450 Galleria Parkway
Atlanta GA 30339
The Lighthouse Lymphedema Network is pleased to invite you to an outstanding educational and awareness conference this fall! Continuing our annual efforts to increase awareness about lymphedema, we have assembled a terrific group of speakers to provide information on a wide variety of topics for patients, family, caregivers, and professionals. We will also have a large number of our excellent vendor associates present to demonstrate current products for lymphedema care and treatment.
Whether you are newly-diagnosed with lymphedema and eager to get more information about what it is and how it can be treated, or perhaps you are interested in learning what the latest research in this field promises, attendance at our program will definitely be beneficial. [Professionals, remember LLN offers CEUs for attendance.]
Our program starts Friday afternoon, October 5, with a pre-conference tour of Sigvaris’ garment manufacturing plant here in Atlanta, and will be followed by a Kick-Off Party from 5:00-7:00 PM. Saturday and Sunday are full of plenary sessions open to everyone, with instructional sessions for both professionals and all other conference attendees.
Lighthouse Information Page
Schedule and Registration Brochure
Information Forum on Lymphedema People
Saturday, May 19, 2007
Benzo-pyrones for reducing and controlling lymphoedema of the limbs.
-------------
Benzo-pyrones for reducing and controlling lymphoedema of the limbs.
Cochrane Database Syst Rev. 2004
BACKGROUND: Lymphoedema is the accumulation of excess fluid in the body caused by obstruction of the lymphatic drainage mechanisms. It can be caused by a number of factors, including congenital predisposition, parasitic infection or surgery. Lymphoedema is chronic and progressive and affects a significant proportion of the population. The standard treatment regimes include compression hosiery, skin care and exercise. The use of drugs in treatment, particularly benzo-pyrones, has gained favour over the last ten years. Benzo-pyrones, originally developed for use in vascular medicine, are prescribed to reduce vascular permeability and thus the amount of fluid forming in the subcutaneous tissues. Advocates for this treatment method believe that, as a result of reducing filtration, the drugs have some beneficial effect on pain and discomfort in the swollen areas. Proponents also claim that these drugs increase macrophage activity, encouraging the lysis of protein, which in turn reduces the formation of fibrotic tissue in the lymphoedematous limb.
OBJECTIVES: To assess the effectiveness of benzo-pyrones compared to placebo or to different benzo-pyrones in reducing limb volume, pain and discomfort in lymphoedematous limbs. To assess the effect of benzo- pyrones on the quality of affected tissues and on the patient's quality of life and, finally, to establish the incidence of adverse effects.
SEARCH STRATEGY: We searched the Cochrane Breast Cancer Group register (September 2003), the Cochrane Central Register of Controlled Trials (The Cochrane Library, Issue 4,2003), MEDLINE, EMBASE, CINAHL, UnCover, PASCAL, SIGLE, reference lists produced by The British Lymphology Society, the National Research Register (NRR) and The International Society of Lymphology congress proceedings.
SELECTION CRITERIA: Types of studies considered for review were randomised controlled trials testing Paroven, coumarin, Venastat, Cyclo 3 Fort or Daflon versus placebo (with both groups having or not having standard physical treatment DATA COLLECTION AND ANALYSIS: Eligibility for inclusion was confirmed by two blinded reviewers who screened the papers independently using a checklist of criteria relating to the randomisation and blinding of the trial. Both reviewers extracted data from the eligible studies using a data extraction form.
MAIN RESULTS: Overall, 15 trials were included that evaluated the role of benzo-pyrones. Three trials of oxerutin were found. Each tested the drug over 6 months using the same dose of drug against placebo. Two were crossover trials and one a parallel group trial with a total number of 127 participants and data available for only 81 of them. There were insufficient data provided in any of the trials to calculate the per cent reduction or increase in baseline excess limb volume. Standard deviations or confidence intervals and the numbers in the groups at the different stages of the trial were missing for all the data in two of the reports and for much of the data in the third, making any attempt at meta-analysis impossible.One trial testing Cyclo 3 Fort (approved name) over 3 months was found and involved 57 patients but provided insufficient data to allow a proper analysis of its findings. A single trial of Daflon (approved name) was found, lasting 6 months and involving 104 participants; once again there was insufficient information provided in the report to reach a conclusion about the effectiveness of the drug.
Three trials of coumarin combined with troxerutin were found and tested two different doses of the drug against each other with no placebo, however, numbers of participants in the trial groups and baseline data were not provided. Eight trials of coumarin were identified. Two of the reports were confirmed as reporting the same trial and a further trial potentially also referred to the same trial but this was unconfirmed. A further two papers appeared to refer to the same trial but this was not confirmed. Three trials involved the same researcher. Five studies were conducted in India or China and they added anti-filarial dia or China and they added anti-filarial drugs to the interventions tested. The numbers of participants withdrawn and the numbers included in the analyses in all these trials were not extractable; the reporting of outcome measures in most of the trials was not clear.
Loprinzi's 1999 trial in the USA reported the conduct of the trial and its findings with more detail, however, its conclusions were very much at odds with the findings of the other trials, finding that no difference was observed between those on the active preparation (coumarin) and placebo in any of the outcomes under investigation. This trial also reported a case of hepato-toxicity in a patient receiving the active preparation.
REVIEWERS' CONCLUSIONS: Meta-analysis was not performed due to the poor quality of the trials. It is not possible to draw conclusions about the effectiveness of Benzopyrones in reducing limb volume, pain, or discomfort in lymphoedematous limbs from these trials.
Plain language summary
Currently there is not enough evidence from research to show that benzo-pyrones are either beneficial or unhelpful in reducing lymphoedema.
Lymphoedema is an accumulation of excess fluid, mainly in the arms and legs. It can occur in several ways: from birth; as a result of a parasitic infection; or as a complication of cancer surgery. The most common treatments are compression hosiery (e.g. bandaging, sleeves, etc.), skin care and exercise. The drugs commonly known as benzo- pyrones have been prescribed to prevent the fluid leakage and collection which characterises lymphoedema.
This review found that there was not enough good quality evidence to draw conclusions about whether benzo-pyrones are useful either in reducing lymphoedema or the pain and discomfort associated with it.
The Cochrane Library
Friday, May 11, 2007
Lymphedema Affects Quality Of Life

Lymphedema Affects Quality Of Life
May 10, 2007
Lymphedema
Almost one-third of young breast cancer survivors surveyed by researchers at the Ohio State University Comprehensive Cancer said their quality of life suffered because they experienced lymphedema, an often debilitating consequence of breast cancer treatment.
The findings are significant because they point to the need for preventive education, says principal investigator Electra Paskett, associate director of population sciences at Ohio State's Comprehensive Cancer Center.
"This is the first study in the United States to look at the incidence, prevalence and persistence of lymphedema among young breast cancer survivors, and how having lymphedema negatively affects their quality of life," says Paskett. "We found that the women who reported persistent swelling of their arms or hands after surgery or radiation were more likely to report poorer quality of life."
The research involved 622 breast cancer survivors who were 45 years or younger at diagnosis. They were monitored with semiannual questionnaires for 36 months after breast cancer surgery to determine the incidence of lymphedema, prevalence of swelling, factors associated with each and quality of life.
The study is published in the April issue of the Journal of Cancer Epidemiology Biomarkers & Prevention.
Lymphedema is a common complication of cancer therapy and is characterized by an accumulation of lymphatic fluid, which causes swelling, most often in the arms or legs. Lymphedema can occur anywhere lymph nodes have been surgically removed or lymph flow has been disturbed.
The study found that 54 percent of participants reported at least one incidence of swelling of the arm or hand within 36 months after surgery, with 32 percent reporting persistent swelling. Swelling was reported to in the upper arm by 43 percent of the women; in the hand only by 34 percent; and in both arm and hand in 22 percent of participants.
Factors associated with an increased risk of developing swelling included having a greater number of lymph nodes removed, receiving chemotherapy and being obese. Factors associated with persistent swelling included having more lymph nodes removed and being obese. Weight management may be a potential intervention for those at greatest risk of lymphedema to maintain optimal health-related quality of life among survivors, Paskett says.
Women who reported swelling had significantly lower quality of life compared to women without swelling, Paskett says.
"These are the women we are most concerned about," says Paskett, a two- time breast cancer survivor who struggles with a mild case of lymphedema. She does daily exercises and occasionally wears a pressure sleeve and glove to control her swelling.
"If we can identify women who are at greatest risk of developing lymphedema, then we can educate them about the problem, so they can watch for symptoms and seek early treatment," Paskett says.
The majority of women in the study reported mild swelling. But even that can interfere with daily activities and negatively affect quality of life, she says.
"Some women must buy larger clothing because of the swelling, while others can't wear rings or button their blouses because their fingers are swollen," Paskett says. "For many, lymphedema is a constant reminder that they had cancer."
Paskett also is the principal investigator of a major, multicenter clinical trial that will enroll 500 women nationwide in the Lymphedema and Education Awareness Program. The ongoing study will test a program to prevent lymphedema in women who have been treated for breast cancer.
There is always a risk of developing lymphedema after the removal of lymph nodes during breast cancer surgery, and the condition can develop immediately, in months or even years later, Paskett says.
"It is important for women to recognize the signs and symptoms of lymphedema and seek treatment immediately to lessen the severity," Paskett says.
Saturday, May 05, 2007
Microsurgery for treatment of peripheral lymphedema: Long-term outcome and future perspectives.
Microsurgery. 2007 May 3
Campisi C,
Eretta C,
Pertile D,
Da Rin E,
Campisi C,
Maccio A,
Campisi M,
Accogli S,
Bellini C,
Bonioli E,
Boccardo F.
Department of Surgery, Unit of Lymphatic Surgery and Microsurgery, San Martino Hospital, University of Genoa, Genoa, Italy.
Authors report over 30 years of their own clinical experience in the treatment of chronic peripheral lymphedemas by microsurgical techniques performed at the Center of Lymphatic Surgery of the University of Genoa, Italy. Over 1,500 lymphedema patients were treated with microsurgical techniques. Derivative lymphatic-venous techniques were most often used. For those cases where a venous disease was associated to lymphedema, reconstructive lymphatic microsurgery techniques were performed (lymphatic-venous-lymphatic-plasty).
Objective assessment was undertaken by water volumetry and lymphoscintigraphy. Volume changes showed a significant improvement in over 83%, with an average follow-up of more than 10 years. There was an 87% reduction in the incidence of cellulitic attacks after microsurgery.
Microsurgical lymphatic-venous anastomoses have a place in the treatment of peripheral lymphedema and should be the therapy of choice in patients who are not sufficiently responsive to nonoperative treatment. Improved results can be expected with operations performed at earlier lymphedema stages. (c) 2007 Wiley-Liss, Inc. Microsurgery 2007.
PMID: 17477420 [PubMed - as supplied by publisher]
Monday, April 30, 2007
Life is Worth Living with Lymphedema - Upcoming Book
Upcoming Book
From: The Lighthouse Lymphedema Network
YES, WE ARE WRITING A BOOK
The LLN is looking for patients, family members, therapists, or physicians to write inspirational short stories of why “Life is Worth Living with Lymphedema”. These stories may be from:
Patients who developed lymphedema after surgical, chemotherapy, or radiation treatment for breast cancer or other types of cancer (secondary lymphedema)
Patients who were born with lymphedema (primary lymphedema) Patients who developed lymphedema from other surgeries such as: knee or hip replacement, abdominal surgeries, fracture, infection, other Family members who are caregivers for lymphedema patients Therapists: successful treatment stories, caring family stories, unusual stories .
Physicians: personal observations and comments The main goal of our book is to let patients and family members know that they are not alone. We care, and we are here for you – always! Help us to help others – the goal for the money raised from the sale of the book is to help indigent patients through our Bandages and Garments (BAG) Fund.
All patients have a story to tell, so let us hear from you! Please print out and fill in the form (click here) and submit your story to the LLN, c/o Linda Gottschalk at the adddress shown on the form.
I am submitting my own story - send us yours as well Pat O'Connor
Wednesday, April 25, 2007
The Use of Bioimpedance Analysis to Evaluate Lymphedema.

The Use of Bioimpedance Analysis to Evaluate Lymphedema.
Friday, April 20, 2007
H.R. 1846, The Medicare Access to Physical Medicine and Rehabilitation Services Improvement Act

We (Lymphedema Stakeholders) are part of the coalition working on this and Lymphedema People submitted a support document as well.
Lymphedema Patients - here is your chance to speak and make your voices heard!!!!!!
Dear Coalition members, supporters and friends:
I am pleased to announce that Rep. Ed Towns (D-NY) introduced legislation that will restore the right of physicians to determine what health professionals are best suited to provide physical medicine and rehabilitation services to Medicare beneficiaries under the supervision of a physician.
H.R. 1846, The Medicare Access to Physical Medicine and Rehabilitation Services Improvement Act, will restore physician choice of who they can hire to provide therapy services to their Medicare patients. By restoring physician authority, all of the Coalition’s members and friends who can legally provide physical medicine and rehabilitation services under the supervision of a physician will be covered by the “incident to” section of the bill.
We expect a companion bill to be introduced in the Senate soon.
This legislation is an important step toward ensuring that Medicare beneficiaries have access to quality health care and restoring physician choice of therapy providers working under the physician’s supervision.
Like the bill introduced in the 109th Congress, H.R. 1846 also establishes education and credentialing standards for athletic trainers and lymphedema therapists as Medicare-covered providers. There have been two minor changes to this bill compared to the version introduced in the Senate last year. The first change is that it more clearly designates the physician/hospital/clinic as the entity that will receive payment. The second change only relates to athletic trainers. It states that in the six states where there is no athletic trainer (AT) licensure, both a bachelor’s degree and national certification will be required in order for the AT to qualify as a Medicare-covered provider.
We are requesting your help with the following:
· Immediately activate your grassroots and tell them to ask their Representatives to co-sponsor H.R. 1846. One of the largest organizations representing therapy providers already covered by Medicare, worked hard to discourage Rep. Towns from even introducing this bill. Ask your members, professional colleagues and patients to send support letters and attend home-town meetings to demonstrate their support of this legislation and Rep. Towns’ bold leadership. Go here for a list of district offices to call to find out the next coalition Web site.
· Make an appointment to see your Representative while he or she in the district over the Spring work session. A meeting with your representatives in your home town will make an impact. ·
Contact me if you plan to travel to Washington D.C. I will assist you with getting appointments with your Representative and talking points, etc.
· Get your physicians, other health care providers and patients involved.
Please contact me and let me know what action you will take to support this legislation and Rep. Towns in his leadership role. I will be happy to assist with news releases and letter writing. Talking points and Q&A are located on the Coalition web site. I will continue to serve as the Coalition’s organizer at no cost to you, the Coalition member, supporter or friend.
If you are not already a member of the Coalition, please consider joining. There are no dues, no fees or commitment to action. We only ask that you support the Coalition’s original mission of reversing the therapy-incident to problem. If you know of patient groups that can support this effort, ask them to join also. Local, state, regional and national groups are welcome.
Thank you for your support and contribution of your valuable resources. On behalf of the National Athletic Trainers’ Association, we are grateful for your support. NATA believes that together we can get the unfair and ill-advised therapy-incident to rule corrected and improve patient care. Our opposition wants to continue to limit patient access to quality health care and not allow physician choice of who can provide therapy services. They continue to spread misinformation about the educational and clinical qualifications of therapy providers like you, and we need each other’s commitment to action and change.
You can make the difference today.
With best regards and many thanks,
Cate Brennan Lisak, Organizer for catel@nata.org
214.637.6282 ext. 148 * 214.637.2206 F
==============
Medicare Access to Physical Medicine and Rehabilitation Services Improvement Act of 2007 - Amends title XVIII (Medicare) of the Social Security Act to provide for: (1) access to outpatient occupational and physical therapy services provided incident to a physician's professional services if furnished by an educated or credentialed therapist who does not have a license; and (2) coverage of certified athletic trainer services and lymphedema therapist services under part B (Supplementary Medical Insurance) of Medicare, including those provided in rural health clinics and federally qualified health centers.
Supported and Endorsed by
Pat O'Connor
Lymphedema People
Surviving cancer and lymphedema

Stories by STEPHANIE FOSNIGHT Staff Writer
Last week Health & Family examined some of the challenges facing cancer survivors, particularly those who have survived bone marrow/stem cell transplants as treatment for leukemia and lymphoma.
This week we focus on those who have beaten breast cancer.
"In the United States, there are about 10 million cancer survivors each year, and about a quarter of them are breast cancer survivors," said nurse Carole Martz, clinical coordinator of the LIFE cancer survivorship program at Evanston Northwestern Healthcare.
Still, those who have had breast cancer have a higher risk of recurrence than survivors of other types of cancer. A breast cancer survivor is also more likely than the general population to develop ovarian, uterine, colon, skin or opposite-breast cancer.
These patients also often experience side effects like fatigue, weight gain, sexual dysfunction and a painful swelling condition called lymphedema. And, like other cancer survivors, they face psychosocial concerns and health insurance complications.
The medical community is realizing that these patients still must be monitored even once they're cancer-free. New organizations like the LIFE program, which began last year with a focus on breast cancer survivors and is now including other cancer patients, offer tools to help survivors navigate life after cancer.
"Survivorship is a unique phase of cancer care," Martz said. "We're just getting the word out that these issues are pervasive."
A rocky transition
Deerfield resident Helen Hackett was diagnosed with breast cancer in March 2006, after a lump appeared on a routine mammogram. The find was a big surprise for the 48-year-old Hackett but she immediately entered treatment. Within five months she had finished the regimen and the cancer was gone, but Hackett recalled the abrupt change between being a cancer patient and a cancer survivor.
"Suddenly, there's no doctor watching you every minute," she said. "Every time you get an ache or a pain, you think, 'What is that?'"
Martz said many breast cancer patients who have graduated from treatment feel vulnerable and confused.
"They're getting intense care and then the doctor says they'll see them in six months," Martz said. "I see people who have been out two or three years and still have questions."
One tool Hackett received when she joined the LIFE program a few months later was a handout explaining which symptoms warranted calling the oncologist.
"To have it set forth in such a straightforward way was really helpful," she said.
For example, Martz counsels her patients to call the doctor if they've stopped getting their periods and then experience spotting.
"We might think her periods are coming back but it might be uterine cancer," she said. "Patients must be informed that these are the symptoms you have to report."
Breast cancer survivors must not only be carefully watched for cancer recurrences, weight gain and sexuality issues, but also be aware that they are more prone to osteoporosis, infertility and early menopause.
Swelling from lymphedema can appear after surgery or radiation, causing lymph fluid to accumulate in the arm of a breast cancer patient. Lymphedema affects up to 20 percent of breast cancer survivors.
Common complaints
Then there are the complaints that are harder to pin down, such as fatigue and cognitive inefficiencies often labeled chemo-brain.
"In general, fatigue is the most common complaint I hear from breast cancer patients," said naturopath Tim Birdsall, vice president of integrative medicine at Cancer Treatment Centers of America-Zion.
Antioch resident Janet Guhl is a breast cancer survivor and also also a surgical nurse at Cancer Treatment Cetners. Although Guhl, 68, has rebounded from her 1999 treatment, it took awhile.
"I felt crummy and tired for a long time," she said.
Hackett, a professional fitness instructor, also noticed the change in her stamina.
"I don't bounce back quite as quickly after I exercise," she said. "That resiliency is not there right now, but I'm working through it."
Birdsall said his breast cancer patients also talk a lot about chemo-brain, a condition suffered by many cancer patients who received high doses of chemotherapy and radiation.
"Do I believe chemo-brain exists?" Hackett asked. "Absolutely. Do I feel like I'm suffering from it? On a daily basis. I have trouble keeping track of things and my short-term memory is shot."
Though Hackett isn't able to recall as many details as before, she tries to keep her brain sharp by doing cognitive puzzles.
"I feel it does help me stay a little sharper and think a little faster," she said.
Getting informed
When Martz meets with a new survivor, she tells her it's time to think about the rest of her life.
"We want to make sure she has a physical every year to check for blood pressure problems, diabetes, weight gain," Martz said. "We talk about wellness in general."
Since Hackett is an exercise guru, she didn't have too many lifestyle changes to make after cancer, but Martz did inform her about the lymphedema risk, which made Hackett alter her workout routine.
"I still lift what a lot of people would consider a fair amount of weight, but I set myself a limit," she said. "I won't go above a certain number of pounds."
Handling stress
All of these concerns can put a heavy emotional burden on cancer survivors. Whether they've lived through breast cancer or another cancer, they're likely to experience Damocles Syndrome, the psychological fear of recurrence.
"Imagine you have an appointment with your physician and he's going to tell you whether or not your disease has come back, news that makes all the difference in the world," said psychologist Richard McQuellon, who counsels cancer survivors at Wake Forest University in North Carolina. "It's surprising how little people talk about this."
Guhl lost her husband to cancer three months before her own diagnosis but said that, despite the toll the disease has taken on her family, she has peace that she is in the right place now.
"Cancer was a difficult journey but it was worthwhile because of all I learned about God and his care and the love I received from my family and my church," Guhl said.
She's on the right track for coping with post-cancer stress, according to McQuellon.
"Being embedded in a loving community of family, faith and friends helps," he said. McQuellon also said there's new evidence showing the brain releases positive chemicals when patients talk about their fears and pressures.
"Talking helps. You're literally creating a new feeling," he said. "A sensation of discomfort can be altered by words."
Now the nurse Guhl gets her cancer patients talking about the disease by sharing her own experience. A woman of strong faith, she urges those who feel comfortable to pray that their faith might be strengthened.
The hardest moment for Hackett was having to tell her son, then 11, about her cancer. But she was surprised by the boy's calm reaction.
"He said, 'Did they catch this early? Then you're going to be OK,'" she said.
Hackett, who said her son learned about breast cancer through the Discovery Channel, then realized the next generation has a much more optimistic view of cancer.
"He had a totally different perspective than my parents, who were devastated, because in their generation cancer meant death," she said. "The fact that there are so many people surviving has changed what cancer means."
Friday, April 13, 2007
Secondary Lymphedema From Infections

Ophthal Plast Reconstr Surg. 2007 March/April
Buckland GT 3rd, Carlson JA, Meyer DR. *Department of Ophthalmology; and daggerPathology, Division of Dermatology and Dermatopathology, Albany Medical College, Albany, New York, U.S.A.
Chronic lymphedema is both a risk factor for and consequence of erysipelas (cellulitis). We report a case of a 62-year-old woman with rheumatoid arthritis treated with etanercept and prednisone, who developed chronic periorbital lymphedema 2 months after Group A beta- hemolytic streptococcus infection of the face. She had significant ptosis OS and thickened, hyperpigmented periorbital skin. Biopsies were consistent with chronic lymphedema. Of note, on 6 months follow- up, the patient's appearance was improved though she still had residual ptosis. A period of extended observation may be warranted in these cases.
Friday, April 06, 2007
Lipedema, Lipodema, Lipoedema, Lipo-Lipedema Facts
Related Terms: Lipedema, lipedema, lipodystrophy, lipadema, lipo-lymphedema
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What is:
Lipodema is a medical condition that is often confused with lymphedema. The individual with this condition may appear to be simply obese and/or to have extremely swollen legs and swollen abdomen. The condition is an uneven distribution of fat cells in the sub-cutaneous regions generally in the legs or abdomen. One major frustration of people with lipodema is that they are accused of being simply "fat," which is absolutely not the case.
Etiology/ Cause:
Unknown, hereditary, genetic
Complications:
Perhaps one of the most critical complication is the acquisition of secondary lymphedema. The increased weight can crush the lymphatics causing blockages and hindrances to lymphatic flow. Another complication is deterioration of the joints and vertebrae from the excessive weight. Other complications may include varicose veins and/or the deep venous system. Many lipodema patients also experience a tremendous amount of pain due to the condition and the affects on the body's systems. Other complications may include "pins and needles" discomfort, decreased vascular flow in the affected limbs and a decreased skin temperature in the affected limbs.
Treatments:
There is no known "cure" for lipodema. Because it is not a medical condition caused by over-eating and improper nutrition habits, diets will not a much of an effect. Neither can the condition be treated with medicines or diuretics.
Treatments that have helped include massage therapy in conjunction with compression bandages, benzopyrones, which includes the use of coumarin. Liposuction has also been used, but the long term success is still open to debate.
Lipodema or Lymphedema:
The signs of lipodema are distinctly differant from lymphedema. First, swelling does not extend to the feet, but extends from the abdomen to the ankle. Second, the limb texture is rubbery not hard. Third, pitting edema is not present. Fourth, Stemmer's sign is negative and finally infections that plague lymphedema patients are generally not a problem with lipodema. The reason for this is that lipodema is not caused by a malformed or damaged lymphatic system.
by Professor Horst Weissleder
Lipedema (painful fat syndrome) can be defined as a chronic disease that occurs in female patients and is characterized by bilateral, symmetrical fatty tissue augmentation mainly in the hip region and upper and lower leg combined with a tendency to orthostatic edema. In male patients lipedema is extremely rare (2).
Fat cells have a spherical shape and like any other cells contain fat deposits covered by a micro filament-reinforced cell membrane. Groups of fat cells form lobes which are surrounded by fibrous tissue. The septa between the lobes contain blood and lymph vessels and nerves. Fatty tissue has an excellent blood supply but fat cell-associated lymph capillaries are not present. Lipedema is likely triggered by a microangiopathy with an increased fragility of the blood capillaries. The increased capillary permeability then leads to a protein-rich intercellular edema. In subsequent stages, inflammation sets in leading to perivascular fibrosis, afew areas of fatty tissue necrosis, oil cysts and an increase in the number of the macrophages. Prominent mast cell recruitment and other inflammatory effects eventually lead to interstitial fibrosis (4).
The most common mistake in the assessment of lipedema is diagnosis as lymphedema. The false diagnosis is usually based on the fact that the entire set of lipedema symptoms are often not known and cannot be found in many textbooks. Therefore, massive lipedematous volume increases in the legs are commonly diagnosed as obesity or lymphostatic elephantiasis (7, 8). On the other hand lipedema can be seen quite often combined with other diseases e.g. obesity, chronic venous insufficiency and lymphedema. With lipo-lymphedema, the tissue is indurated and pretibial indentations can be made. Contrary to simple lipedema, the regions of the ankle and the dorsal foot are edematous. Natural skin creases are deepened and a positive Stemmer sign confirms damage of the lymphatic system (7, 8).
Up till now lipedema could only be treated using conservative methods with complex physical therapy and exercises. By this, a reduction of edema and a decrease or elimination of tension and pain could be reached. Nowadays the increased fat volume can be removed by surgical therapy with liposuction in tumescent local anesthesia. However, an existing lymphangiopathy must be considered as a contraindication. Liposuction is the most frequently used cosmetic procedure not only in the United States but also in Germany. Cosmetic surgery is lucrative and is increasingly being performed by non-plastic surgeons and non-physicians, some of whom have little more experience than a weekend seminar. The public perception of this cosmetic procedure as minor cosmetic surgery fails to consider the possibility that major complications may result from this which could cause fatal outcome according to recent publications. Therefore it is strongly recommended that liposuction in lipedema be performed only in specialized centers using modern techniques (5, 6). Finally, it should be mentioned that lipedema is not caused by excessive consumption of calories; hence calorie reduction will not be beneficial. Dietary measures are advised only with obesity.
Allen E V, Hines E A, Lipoedema of the legs. A syndrome characterized by fat legs and edema. Proc Staff. Meat. Mayo Clinic 1940; 15:1842) Chen, S. G., Hsu, S. D., Chen, T. M., Wang, H. J. Painful fat syndrome in a male patient. Br J Plast Surg 2004;57(3):282-2863) Fasshauer,M., Klein J., Blueher M., Paschke R., Adipokine: Moegliches Bindeglied zwischen Insulinresistenz und Adipositas.Dtsch Arztebl 2004;101:A3491-34954) Kaiserling E. Morphologische Alterationenen, in M.Foeldi, S.Kubik, Lehrbuch der Lymphologie, 5.Auflage, Urban & Fischer 20025) Lehnhardt, M. Homann,H.H., Druecke, . D., Palka, P., Steinau, H.U. Liposuktion–kein Problem? Majorkomplikationen und Todesfälle im deutschsprachigen Raum zwischen 1998 und 2002. LymphForsch 2004;8(2):74-786) Schmeller W., Meier-Vollrath I. Moderne Therapie des Lipödems: Kombination von konservativen und operativen Maßnahmen. LymphForsch 2004;8(1):22-267) Stroessenreuther R.H.K. Lipoedem und Cellulitis. Koeln, Viavital 20018) Weissleder H. , Schuchhardt C., Lipedema in H.Weissleder, C.Schuchhardt, ed. Lymphedema – Diagnosis and Therapy. Köln, Viavital 2001:247-265
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Clinical Trial
Controlled Clinical Trial
PMID: 8745878 [PubMed - indexed for MEDLINE]
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Lipedema Lipodema Lipoedema
No matter how you spell it, this is another very little understood and totally frustrating conditions out there. This will be a support group for those suffering with lipedema/lipodema. A place for information, sharing experiences, exploring treatment options and coping.
Come join, be a part of the family
Lipedema, Lipoedema, Lipodema Yahoo Support Group
Subscribe: lipedema_lipodema_lipoedema-subscribe@yahoogroups.com
Comprehensive blog site for brining together all information on lipedema to go with our Yahoo group Lipedema, Lipoedema, Lipodema.
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