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Looking to correspond with with a special person in a faraway (or not so faraway) place who also has lymphedema? Look no further than the NLN Lymphedema Pen Pals/NetPals Network!
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![lymphedema butterfly]() Welcome to Lymph e-Channel
Dear friends of the NLN,
My staff and I are thrilled to send you our latest issue of Lymph e-Channel. In this May/June edition you will find a range of inspirational and educational articles contributed by therapists and patients. This month we highlight a perplexing phenomenon - cording. Cording frequently occurs shortly after breast cancer surgery, and it is only in the last decade that practitioners have seriously addressed these unknown painful symptoms. Jodi Winicour, a lymphedema therapist and expert in BC rehabilitation, shares her knowledge and guidance on this subject. Dr. Nancy Hutchison, the chair of the NLN Medical Advisory Committee, recently invited her state representatives to visit her hospital where she educated them about lymphedema. One of her patients even showed the representatives her leg and demonstrated self-care. We are lucky to have a knowledgeable LE doctor who makes time to advocate for patients rights, and we hope that you will organize a similar meeting in your community.
In our patient perspective, Margaret Omori recounts her initial dismay with her lymphedema diagnosis following BC surgery, but also how she found a positive outlook from it all. Margaret and her sister, Monica, created a fashionable lightweight stretchable coverlet which adds a "sassy" flair to her sleeve. The sisters are co-founders of "MySassySleeve" company and their brand of colorful and fun coverlets are shared in our product review section. I am also excited to introduce a new regular feature to e-Channel - patient stories from our Marilyn Westbrook Garment Fund (MWGF). The MWGF directly impacts a patient's life and in this issue we share the story of one beneficiary, Ms. Gray.
Hopefully these stories inspire you to share your own experiences and go out and make a difference in your communities. This issue is full of interesting articles and information, and I hope you take the time to read and thoroughly enjoy this Lymph e-Channel.
In Good Health,
Saskia RJ Thiadens, RN Executive Director, NLN |
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| Painful Cording of the Arm by Jodi Winicour PT, CMT, CLT-LANA
*References listed at the bottom of issue.
If you have upper extremity lymphedema caused by breast cancer surgery or treatments, you may have experienced a painful and bothersome condition called axillary web syndrome, or AWS. [Figure 1] Unfortunately, most lymphedema certification programs do not have the time to teach the treatment of AWS, which leaves lymphedema patients well treated for their swelling conditions but inadequately cared for regarding their cording. As few as 6% [1] to as many as 72% [2] of women who have had lymph nodes removed from their armpit (axilla) will develop AWS. Considering the pain it causes along with its frequent relationship with lymphedema, knowledge of its characteristics, onset and treatment is necessary to provide safe, holistic care for breast cancer survivors.
AWS characteristics:
AWS has certainly been around since the first radical mastectomies of the early 1900s, but the phrase "Axillary Web Syndrome" was coined in 2001 by Alexander Moskovitz, MD et al. [1] He describes painful cords of tissue that originate in the axilla, run along the inside of the upper arm to the elbow, and sometimes even to the wrist or the base of the thumb. These cords are made more taught by reaching out to the side and frequently can be seen as well as felt. Painful cording typically limits overhead and forward reaching along with elbow and forearm movements which makes activities such as cooking, cleaning, exercise, reaching and dressing difficult or impossible during the more painful stages.
How and when does AWS happen?
Typical onset of cording is 2 to 4 weeks after axillary node removal. [1, 2, 4, 5] Some with AWS have so much pain that it is difficult to use their arm while others feel that stretching and massage techniques are very helpful. Studies consistently report that the AWS will resolve on its own between 3 and 4 months after onset, but therapists who treat AWS have noted it lasting up to 1 year or longer without treatment. Untreated AWS may cause problems during the planning period for radiation therapy in those not needing chemotherapy. If unresolved, the cording can make CT scanning for radiation planning a very painful procedure which can delay the start of radiation therapy. It is much less common to see AWS after chemotherapy is completed, which is typically 3 to 6 months post surgery, but it does occur.
What is the stuff called AWS?
Although there are few tissue samples of AWS that have been looked at under the microscope, we do know that AWS can be hardened and enlarged lymphatic vessels that are filled with lymphatic fluid. This fluid cannot exit the arm normally through lymphatic pathways to the axilla due to lymph node removal. [1, 5, 10] AWS may also be small veins near the skin that are clotted or hardened. [1] In some cases, the webbing is hardened and clotted lymphatic fluid that causes inflammation of the vessels and makes them stick to the fatty tissues of the arm resulting in pain when moving or stretching the arm.
What increases my risk of having AWS?
While weight gain [11,13], obesity [11,13] & higher Body Mass Index (BMI of 25-26 kg/m2 [2,12,13]) have been associated with the onset of lymphedema, a lower BMI of 23[2] and 25.1 [ 3]) have been associated with the onset of AWS. These are confusing findings especially considering that both lymphedema and AWS seem to be caused by the axillary node removal and tissue scarring. Thinner women have both the increased risk of AWS and difficulties with shoulder movement after lymph node surgeries for breast cancer, while their risk for lymphedema should be lower than heavier women. [2, 11, 13]
What can I do about AWS?
While studies written by physician researchers state that AWS will resolve on its own, therapists around the world who frequently treat AWS agree that gentle massage, manual lymphatic drainage techniques and range of motion exercise can accelerate pain relief and tissue healing. Physical therapy may shorten the natural course of AWS to 6-8 weeks. [3] In some cases, the AWS presents with a mild lymphedema of the forearm. While traditional CDT (Complete Decongestive Therapy) techniques may reduce the lymphedema, it may become a chronic condition unless the AWS is treated.
Soft tissue techniques for cording include very gentle tissue "bending" or "traction" techniques applied along the taut cord in a comfortable position of stretch. Localized thumb and whole handed MLD techniques along the cording is also useful. Do combine active stretching with massage techniques to further improvements and do not be surprised if a "pop" is heard along the cording during your gentle treatments or during stretching. This "pop" will usually ensure immediate pain relief during movement but can also lead to lymphedema on rare occasions. Please avoid being overly aggressive (causing pain) during your treatments as this can cause an inflammatory reaction that may increase the lymphedema risk of your affected arm.
Knowledge of safe and effective techniques to hasten the resolution of AWS is necessary in the treatment of those recovering from breast cancer treatments and arm lymphedema. Hopefully reading this article will help to ease you or your patients' discomfort and increase your awareness of the treatments that are available.
Jodi Winicour PT, CMT, CLT-LANA Longmont United Hospital, Longmont, Colorado. Jodi is a full time clinician specializing in the treatment of lymphedema and cancer related dysfunction. She also is a Lymphedema Certification and Breast Cancer Rehabilitation Course instructor for Klose Training & Consulting. Contact her at: Jodi@KloseTraining.com
![Axillary Webbing]() |
![Margaret]() Be Sassy!
by Margaret Omori I didn't know enough, in the summer of '04, to be devastated by the news that I had developed lymphedema. I didn't know about the physical limits that would forever dictate how much I could lift, or the precautions that I would have to take in order to work in my garden. I didn't count on the huge financial burden that accompanied that diagnosis. The cost of multiple, custom-made compression garments that had to be factored into our family budget every three or so months or the expense of periodic "tune-ups" with my therapist. And I certainly wasn't prepared for the emotional toll that living under the cloud of this chronic condition would take on me or my family. The fact of the matter is: I am a breast cancer survivor and I have lymphedema.
Believe me, I'm thrilled to BE a survivor, grateful for the wonderful medical care that I received, and thankful to the dedicated professionals; the doctors, therapists and fitters who have successfully treated and continue to help me manage my condition. But what I most wanted, after I had battled and beat the breast cancer beast, was to look and feel like my old self. Needless to say, wrapping my arm in multiple layers of cumbersome bandages and wearing bland compression garments not only served as a constant reminder of my cancer battle, my self-esteem was assaulted on a daily basis! Facing endless questions from well-meaning strangers asking, "How did you hurt yourself?" or, "Why are you wearing a bandage?" made me feel less like a "survivor" and more like a casualty.
Discouraging? Yep! Depressing? You bet! And that would have been the end of my story had it not been for a timely gift in the form of some pirate tattoos (full disclosure: I'm a huge Johnny Depp fan!). The novelty of imagining my affected arm covered entirely in bold tattoos not only made me laugh, it gave me the courage to envision turning a negative into something positive. I thought, why not create something stylish and fun to wear over the dreaded "bandage"? Since wearing a compression sleeve draws attention anyway, why not do it in a way that attracts smiles instead of sympathy? Instead of feeling self-conscious, why not sassy? Thus inspired, my sister and I created a line of vibrant, tattoo-like coverlets called "MySassySleeve." Our goal is to provide an affordable and fashionable coverlet to help women regain a positive self-image and to change how others interact with us.
While lymphedema wasn't on my radar back in '04, it is now. My sister and I have joined our efforts with those in the medical community to actively raise awareness about lymphedema. We've helped advocate to get more comprehensive coverage for patients with lymphedema. And, most gratifyingly, we've raised funds through our business to aid those in need to purchase medical compression wear. Along with the talented artists, local manufacturers and others who help to create our product, our shared goal is to make a difference in the lives of those with lymphedema... one sleeve at a time.
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![MySassySleeve]() MySassySleeve
Therapist Review: by: Guenter Klose, MLD/CDT Certified Instructor, CLT, founder of Klose Lymphedema Care in Lafayette, CO., Executive Director of Klose Training and Consulting.
When Monica (co-founder of MySassySleeve) introduced me to her decorative coverlets and brought several samples in to our office, I was happy to see such a fresh and innovative product offered for people with lymphedema. It is exciting that patients who wear compression garments to manage their lymphedema now have a design choice with these interchangeable, non-medical sleeves. Instead of feeling like they need to hide their compression sleeve under a jacket or long-sleeved shirt, they can wear these light-weight, stretchable coverlets over their garment to add a bit of light-hearted fun.
I often hear from many of my patients that having to wear a medical garment is not only unattractive but makes them feel self-conscious. We immediately saw emotional benefits in patients who wear the MySassySleeve coverlets. By drawing attention to the colorful, tattoo designs and away from the medical looking therapeutic compression sleeve, my patients have rediscovered their self-esteem and self-confidence. They feel good about themselves and that has empowered them.
While MySassySleeve is only decorative and does not manage lymphedema, it certainly provides an emotional, feel-good benefit that medical garments alone cannot provide. Congratulations on a wonderful and beneficial product.
Fitter Review:
"The best part of having MySassySleeves for my customers is the spontaneous moment of surprise and joy they create. The bright colors and bold designs immediately transform a medical product into a fashion statement, and in the same moment transform a patient's experience from 'a little bit awful' to 'a little bit fun'. The tattoo patterns ARE sassy and we've watched so many women change their thinking from 'Not for me.' to 'Why NOT me!?' And you have to love the smile that goes along with trying something just a little outside their comfort zone. We have spent many years providing our customers with outstanding therapeutic garments- We are now delighted to provide them with the opportunity to see their compression sleeve as a blank canvas for their newest accessory!"
Claudia Boyle Van Driel's Medical Support Wear
Patient Reviews:
"What MySassySleeve is doing is so wonderful! It will make wearing my dull and boring compression sleeve so much fun to wear. It will also make me want to wear it more often which will benefit my condition. I will wear it proudly...thanks again!" Emmie B.
"I am very excited about the MySassySleeve. Great idea- the fact that you are not trying to compete with medical grade sleeves but compliment them is perfect! I brought them to two breast cancer care education nurses and they loved them!" Syndi S., CMF, BOC, ABC Wilmette, IL
![MySassySleeve]()
This Product Review is a paid advertisement. |
Marilyn Westbrook Garment Fund
The Marilyn Westbrook Garment Fund (MWGF) holds a special place in the hearts of the NLN staff. It gives us the opportunity to not only help our patients, but connect with them on a personal level and see firsthand the profound impact the fund has on their lives. Because of this, we have decided to share their stories with you. In every issue of Lymph e-Channel, we will feature the story of a MWGF patient. We hope you find them as inspiring and courageous as we do. Ms. Gray is a breast cancer survivor who developed lymphedema shortly after her surgery in 2007. Initially, she was able to afford a sleeve and gauntlet, but the cost of replacing these garments was a burden for her. Instead, Ms. Gray continued wearing the same sleeve and gauntlet for the next two years. No longer providing adequate compression, her sleeve started rolling down, cutting off the circulation in her arm. Ms. Gray's swelling progressively worsened as a result. Fortunately, Ms. Gray's therapist told her about the MWGF and she quickly contacted us. With Juzo's generosity, we were able to supply Ms. Gray with a new set of garments.
"I wish to take this opportunity to thank you for all your efforts on my behalf and to thank the organization for financially supporting my need. At the time of the initial application I did not know what to do about getting a new sleeve and gauntlet. And everyday the old one was getting more and more uncomfortable. It is very comforting to know that there are people and organizations that help when you need it and with what you need.
I can only say thank you again, though that seems to be very little for the great thing you have done for me!
Sincerely yours, G. Gray"
Ms. Gray's case is not unique. Across the country, there are many patients that need lymphedema garments. For many of us, the benefit of proper garments is clear ![MWGF Fund Raising]() - they are crucial to the success of lymphedema therapy.
You can help!
This year we plan to raise at least $25,000 to continue the work of the MWGF. As part of our Sponsor-A-Patient Campaign, a $50 pledge will support one patient by: - Sponsoring a patient's application including a yearly membership to the NLN
- Covering program costs to administer and continue to grow the fund.
For only $50 you can positively affect someone's life. But don't feel limited by one amount; you can make a contribution in any amount. Large or small, every dollar supports a patient. Check back frequently to track our progress on the thermometer! (Donors can also choose to have their name and/or logo listed)
On behalf of the many patients, therapists, affiliated clinics, and the NLN staff, we thank you from the bottom of our hearts.
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Federal Health Policy Staffers Visit Sister Kenny Rehabilitation Institute to Learn About Lymphedema
April 26, 2011 On Tuesday, April 26, leaders from Allina and the Sister Kenny Rehabilitation Institute in Minneapolis, MN met with the health policy staffers from the offices of Senator Amy Klobuchar, Senator Al Franken and Congressman Keith Ellison to talk about lymphedema.
Erika Nelson, Sen. Klobuchar's office, Bethany Snyder, Sen. Franken's office and Mike Siebenaler, Congressman Ellison's office learned about lymphedema, proper treatment of the disease, innovative work being led by the Sister Kenny Rehabilitation Institute, and the challenges faced by providers and patients due to the lack of Medicare and some private insurance coverage.
Nancy Hutchison, MD, Medical Director of the Sister Kenny Lymphedema and Cancer Rehabilitation Program and chair of the Medical Advisory Committee of the National Lymphedema Network, gave a presentation about lymphedema, the gaps in coverage for lymphedema and the need for federal legislation.
The group heard the facts and read the statistics but what really drove the message home was the presence and story of Kris Maser, a Sister Kenny Rehabilitation Institute patient with lymphedema. Maser, a wife, mother, attorney and cancer survivor, has been a patient of Dr. Hutchison's for several years and wanted to help educate our officials on this disease. She told them her personal story, showed them what lymphedema looks like and demonstrated how she has to wear several types of garments, compression bandages and home lymphatic drainage to control her lymphedema.
It is Allina's hope that The Lymphedema Diagnosis and Treatment Cost Savings Act will once again be introduced at a federal level that starts to address some of the many concerns around this disease. The Health Policy staffers for the Minnesota Senators Klobuchar and Franken and Congressman Ellison stated that the information was very helpful. They recommended that other lymphedema providers and patients around the country hold similar meetings with their legislators and staff.
Learn more about lymphedema and the care provided by certified professionals at Sister Kenny Rehabilitation Institute on Allina.com.
The Sister Kenny Rehabilitation Institute at Allina Hospitals & Clinics is a national leader in lymphedema treatment. It has one of the largest lymphedema programs in the United States and is the only physician- directed multisite, multi-hospital lymphedema program in Minnesota with programs at eight Allina hospitals and nine Sister Kenny outpatient centers, with over 30 Certified Lymphedema Therapists on staff.
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References from Painful Cording of the Arm:
- Moskovitz AH, Anderson BO, Yeung RS, Byrd DR, Lawton TH, Moe RE. Axillary web syndrome after axillary dissection. Am J Surg. 2001; 181:434-439.
- Leidenius M, Leppanen E, Krogerus L, von Smitten K. Motion restriction and axillary web syndrome after sentiniel node biopsy and axillary clearance in breast cancer. Am J Surg. 2003;185(2):127-130.
- Lacomba MT, Orlando M, Coperias Zazo J et al. Axillary Web Syndrome after axillary dissection in breast cancer: a prospective study. Breast Cancer Res Treat 2009; 117: 625-630.
- Craythorne E. Axillary Web Syndrome or Cording, a Variant of Mondor Disease, Following Axillary Surgery. Arch Dermatol, 2009; 145(10): 1199-1200
- Reedjik M, Boerner S, Ghazarian D et al. A case of axillary web syndrome with subcutaneous nodules following axillary surgery. The Breast. 2006; Vol. 15, 411-413.
- Lauridson MC, Christiansen P, Hessov I. The effect of physiotherapy on shoulder function in patients surgically treated for breast cancer: A randomized study. Acta Oncologies, 2005; 44: 449-457.
- Opie EL. Thrombosis and occlusion of lymphatics. Journal of Medical Research 1913; 29: 131-146.
- Kepics JM., 2004. Physical therapy treatment of axillary web syndrome[online]. Look Smart, Rehabilitation in Oncology. Available from:http://www.findarticles.com/p/articles/mi_qa3946/is_200401/ai_n9370189[Accessed 25 November 2005].
- Mera K, Terasaki K, Kanzaki T, et al. Mondor's Disease of the Neck. Journal of Dermatology, 2009; 36: 179-180.
- Marcus RT, Pawade J, Vella EJ. Painful lymphatic occlusion following axillary lymph node surgery. Br. J. Surg. 1990; Vol 77, 683.
- Petrek JA, Senie RT, Peters M et al. Lymphedema in a Cohort of Breast Carcinoma Survivors 20 Years after Diagnosis. Cancer, 2001; 92, (6) 1368-1377.
- Sagen A, Karesen R, Risberg MA. Physical Activity for the Affected Limb and Arm Lymphedema after Breast Cancer Surgery. A Prospective, Randomized Controlled Trial with Two Years Follow-up. Acta Oncologica, 2009; 48: 1102-1110.
- Shaw C, Mortimer P, Judd PA. A Randomized Controlled Trial of Weight Reduction as a Treatment for Breast Cancer-related Lymphedema. Cancer, 2007; 110 (8) 1868-1874.
- Boneti C, Korourian S, Diaz Z et al. Scientific Impact Award: Axillary Reverse Mapping (ARM) to Identify and Protect Lymphatics Draining the Arm During Axillary Lymphadenectomy. The American Journal of Surgery, 2009; 198, 482-487.
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oh What a great idea you have given. It is really very useful. If we have to go for a party so you can use this scarfs to look good. so now there is no need to avoid any parties. Thanks a lot!!!Read More
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