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Posts Tagged ‘lymphedema’

Lymph Notes Scholarship – National Lymphedema Network

Thursday, March 28th, 2013

Lymphedema patients NEED properly trained patient oriented, professional therapists in Kitsap County!  

Dr. Melissa Mercogliano of The Center for Orthopedic and Lymphatic Physical Therapy, in Port Orchard,  http://colpt.com/mam.html is the person who helped us a few years ago and taught my husband and me how to properly wrap my legs.  She is a fountain of patient information and goes out of her way to inform and educate.

Now…a Lymphedema Scholarship is available!  .  The need is great.  So – those interested – please apply!

Lymph Notes Scholarship – March 27, 2013

The National Lymphedema Network is proud to announce the establishment of the Lymph Notes Scholarship.

In the United States, access to treatment is still a critical factor for many lymphedema patients. Outside of major metropolitan areas, finding adequate treatment continues to be a major obstacle to care.

To help address the need for increases access to care, this annual scholarship, generously provided in honor of Lymph Notes, will cover up to $1,000 tuition for a healthcare professional to obtain specialty lymphedema training and certification.

Applicants are invited to submit an application online at:  http://tinyurl.com/lymphnotesscholarship  

The deadline for applications is July 15, 2013.   Questions regarding this scholarship program should be directed to the NLN office at 415-908-3681 or nln@lymphnet.org.”

Thanks for listening… Sharon O’Hara <familien1@comcast.net>


Lymphedema = Pain = More Pain = Avoidance = Get Educated = Get Fit

Tuesday, March 12th, 2013

 

Lymphedema = Pain = More Pain = Avoidance = Get Educated = Get Fit  

National Lymphedema Network – Educating Patients Online 

Part 3b of 3b 

Exercise and Compression Garments:

Lymphedema Remedial Exercise as a part of CDT requires compression garments or bandages.3-5 There are no studies on the use of compression garments when performing stretching or flexibility exercise alone.

Our visiting young cousin from Norway rode her first recumbent trike in Silverdale and wore "What is COPD" tee shirt while she was here.

Our visiting young cousin from Norway rode her first recumbent trike in Silverdale and wore “What is COPD” tee shirt while she was here.

My young cousin, Malin from Norway is included here because COPD (Chronic Obstructive Pulmonary Disease) began in 1997 for me and led into my long ride into medical conditions – one after the other and my gathering weight attracted lymphedema as surely as fresh bread and butter sticks to peanut butter and strawberry jam. 

“The NLN Medical Advisory Committee (MAC) recommends using the guidelines for aerobic and resistance exercise to guide use of compression during flexibility exercise since flexibility exercises may be combined with other forms of exercise. 

The amount and type of compression for exercise should be decided with input from a professional knowledgeable about lymphedema. There is no strong evidence basis for the use of compression garments during exercise; however, most experts in the field of lymphedema advise the use of compression during vigorous exercise for people with a confirmed diagnosis of lymphedema.

Melissa showing me the latest fast, protective lower leg support

Melissa showing me the latest fast, protective lower leg support

Melissa Mercogliano, Center for Orthopedic & Lymphatic Physical Therapy in Port Orchard, WA. recently showed me a new and easy way to add support stockings…easy except for we Tub’ettes.

“One study suggested that individuals with lymphedema who do resistance exercise without compression may increase swelling. 

20 Resistance exercise may reduce limb volume when used as an adjunct to compression therapy in people with confirmed lymphedema.

8 One study showed that aerobic and weight-lifting exercise was safely performed without compression in women at risk for breast cancer-related lymphedema.

9 That study showed patients who developed lymphedema could continue to exercise with compression garments. Compression garments should be measured by an individual trained and experienced in fitting compression garments for lymphedema and should be at least Class I compression for upper extremity. Higher classes may be required for more severe lymphedema and for lower extremity lymphedema.

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Custom sized, each leg. This pair is old...notice the crinkles below the rubber dotted band. The replacement compression stockings are black.This pair is about one year old.

Custom sized, each leg. This pair is old…notice the crinkles below the rubber dotted band. The replacement compression stockings are black.
This pair is about one year old.

I throw the stockings in a little zippered mesh cloth bag and into the washer on a short cycle, regular soap, extra rinse – cold water and smooth out and let them hang to dry.

I prefer the toe less stocking so my toes don’t get scrunched up and have two different kinds. The little rubbery tips around the tops of both help them from sliding on down my leg and cutting off circulation.  Ask your doctor. 

“A hand piece (gauntlet or glove) is recommended when exercising with a sleeve to avoid causing or exacerbating hand swelling. 

Definition of Individuals At Risk for Lymphedema:

Individuals at risk for lymphedema have not displayed signs and symptoms of lymphedema but may have sustained damage to their lymphatic systems through surgical lymph node removal or radiation therapy.

Additionally, individuals at risk may have surgical incisions in the vicinity of lymph transport vessels.

Individuals who have family members with hereditary lymphedema may also be at risk.

An individual’s risk of lymphedema may change over time depending on factors such as weight gain, age, and changes in medical condition. 

It is the position of the NLN that:

Exercise is a part of a healthy lifestyle and is essential for effective lymphedema management

Before starting any exercise program, individuals should be cleared for the program of activity by their physician.

Lymphedema Exercises (also known as Remedial Exercises) are specific rhythmic muscle and breathing exercises used as a part of lymphedema treatment in Phase I and Phase II

Complete Decongestive Therapy (see the NLN Position Paper on Diagnosis and Treatment). http://www.lymphnet.org/pdfDocs/nlntreatment.pdf 

In Phase II lymphedema maintenance, these exercises can be combined with or integrated into a regular exercise program.

After intensive treatment with CDT, the person with lymphedema should work with the certified lymphedema therapist or qualified lymphedema specialist provider (MD, NP) to adapt their remedial exercises into their fitness and weight management program at the time they are moving from Phase I (treatment phase) to Phase II (self-management).

Individuals with or at risk for lymphedema can and should perform aerobic and resistance exercise in a safe manner.

The individual with or at risk for lymphedema may benefit from working with an Exercise Physiologist and/or Personal Trainer. The person with lymphedema should inquire if the trainer or exercise physiologist has experience working with lymphedema and other medical conditions. Certification for personal trainers varies. Patients who are unsure of about the qualifications of a community exercise practitioner should work with a certified lymphedema therapist or health care provider to assist them in finding a community exercise program or professional.

In general, individuals with a confirmed diagnosis of lymphedema should utilize compression garments or compression bandages during exercise.

Individuals at risk for lymphedema may or may not utilize compression garments during exercise; this is an individual decision to be made with guidance from a care provider and/or therapist based on risk, activity, and conditioning level.

Individuals at risk for lymphedema will benefit from most forms of exercise tailored to their individual needs.

Individuals at risk for or with a confirmed diagnosis of lymphedema should avoid repetitive overuse of the affected part. Sudden increase in an individual’s usual exercise duration or intensity may trigger or worsen lymphedema. It is likely that a program of slowly progressive exercise for the affected body part will decrease the potential for common daily activities to result in overuse.

Exercise should be started gradually, increased cautiously, and stopped for pain, increased swelling, or discomfort.

The risks of exercise for the individual with or at risk for lymphedema must be balanced against the risks of deconditioning that undoubtedly results from not exercising. A deconditioned body part with or at risk for lymphedema can do progressively less without risk of overuse. As a result, exercise is recommended for those with and at risk for lymphedema.

The NLN cannot specifically determine the safety of exercise for any individual. The guidelines in this Position Paper provide general principles, but do not substitute for medical evaluation and recommendations from a health care professional. It is the responsibility of all individuals with or at risk for lymphedema to consult with their health care provider regarding their own specific needs. 

References:

1. Tidhar D, Katz-Leurer M. Aqua lymphatic therapy in women who suffer from breast cancer treatment related lymphedema: a randomized controlled study. Support Care Cancer. 2010;18(3):383-392.

 2.Moseley AL, Piller NB, Carati CJ. The effect of gentle arm exercise and deep breathing on secondary arm lymphedema.Lymphol. 2005;38(3):136-145.

3.Boris M, Weindorf S, Lasinski B, Boris G. Lymphedema reduction by noninvasive complex lymphedema therapy. Oncol (Williston Park). 1994;8(9):95-106; discussion 109-110.

4.Földi E, Földi M, Weissleder H. Conservative treatment of lymphoedema of the limbs. Angiol. 1985;36(3):171-180.

5.Földi M, Földi E, eds-in-chief. Foldi’s Textbook of Lymphology for Physicians and Lymphedema Therapists, 2nd ed. Munchen, Germany:Urban & Fischer; 2006.

6.Bergmann A, Mendes VV, de Almeida Dias R, do Amaral E Silva B, da Costa Leite Ferreira MG, Fabro EA. 

Incidence and risk factors for axillary web syndrome after breast cancer surgery [published online ahead of print October 17, 2011].

Breast Cancer Res Treat. doi:10.1007/s10549-011-1805-7.

7.Fourie W, Rob KA. Physiotherapy management of axillary web syndrome following breast cancer treatment: discussing the use of soft tissue techniques. 

Physiotherapy. 2009;95(4):314-320. 

 

NLN • 116 New Montgomery Street, Suite 235 • San Francisco, CA 94105

Tel: 415-908-3681 • Fax: 415-908-3813

Infoline: 1-800-541-3259 • Email: nln@lymphnet.org •

Online: www.lymphnet.org 

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Several years ago, I called Harrison Medical Center and asked if non-cancer patients with lymphedema could attend their support group meetings.  At that time, it was limited to cancer patients.

Yesterday I called the following number to be certain it was still up to date.  It is and the closest Lymphedema Support Group I know about.

If anyone knows of more, let me know – I can post it here.

 

Kitsap County Closest Support Group 

Northwest Lymphedema Center

Kent, WA (24.11 miles * Meeting times: Date varies  Phone: (206) 575-7775 

 

Tub’etts! 

I’d like to be part of a support group of fatties who NEED to lose weight for their health’s sake – with or without current medical issues. No dues – a scale and occasionally health professionals willing to talk to us – to educate us – to motivate us – guest speakers. 

I have been told that I’m not a good candidate for bariatric surgery…so, before I push that particular button – is there anyone beside me, who wants to be part of an obese/tubby support group to work together for weight loss and good health? 

To lose weight through good nutrition and exercise is my goal. 

We are dying of too much fat, fellow Tubby Ones.

Will you join me in our battle to shed the fat and live healthy?  Let me know…

 

Thanks for reading… Sharon O’Hara familien1@comcast.net

Kitsap County Library System has educational Lymphedema books for the layperson – just ask.


Lymphedema Tied to Obesity? Exercise helpful too it seems

Monday, March 11th, 2013

Greetings…  Part 3a of 3b.

Dr. Halligan, surgeon, Doctor’s Clinic Silverdale, saved my life/legs when he checked to see if the deep lesions on my left leg could be treated without surgery….and wanted a daily cleaning –debriding – and rewrapping of the leg. The doctor ultimately did it himself – everyday in the hospital.

Back home my husband, trained by Doctor’s Clinic Silverdale took over the leg lymphedema wrap.

Restless Leg Syndrome (RLS) – now called

Willis-Ekbom Disease (WED) Foundation www.willis-ekbom.org – was my biggest hindrance to healing.

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“Lymphedema Tied to Obesity 

By Todd Neale, Senior Staff Writer, MedPage TodayPublished: May 30, 2012 

 

Obesity may contribute to the development of lymphedema, a small study showed.

 

Among 15 obese patients with enlargement of the legs, the average body mass index was significantly greater for those with confirmed lymphedema (70.1 versus 42.0 kg/m2, P<0.001), according to Arin Greene, MD, of Children’s Hospital Boston, and colleagues.

 

“Our findings suggest that obesity … may be a cause of lower-extremity lymphedema,” they wrote in a letter to the editor in the New England Journal of Medicine.

 

“As the amount of adipose tissue increases in the lower extremity, lymphatic vessels may become dysfunctional (possibly because of compression or inflammation), thereby reducing proximal lymphatic flow,” they explained.

 

“Alternatively, elevated production of lymph from an enlarging limb may overwhelm the capacity of a normal lymphatic system to remove the fluid from the extremity,” they continued. “Although lymphedema is typically progressive, we speculate that 

http://www.medpagetoday.com/Endocrinology/Obesity/32986

 

Steven Gardner, political reporter at the Kitsap Sun, will have Bariatric surgery at Swedish Hospital in Seattle probably in the April time frame.  Steven tells his story here: http://fieldofsteve.com/

 

“Obesity is known to be a major lymphedema risk factor” Part 3a of 3b

 

Fitness and Exercise:

It is very important for individuals with lymphedema to be physically fit and maintain a healthy weight. A safe form of exercise is an essential part of a fitness program for people with lymphedema. Fitness and exercise are not the same. Exercise includes many different types of physical movement. The three main types of exercise are: aerobic, strength, and flexibility.

 

These three types of exercise, along with Lymphedema Remedial Exercises, are addressed

in this paper. There are many other types of exercise that have health benefits such as Pilates, yoga, Tai Chi, Qigong, aquatic exercise,1trampoline rebounding, breathing exercises, and relaxation exercise that have not been adequately studied in people with lymphedema. However, the person with lymphedema can use the benefits of any system of exercise if he/she follows the general safety principles of exercise with lymphedema, seeks medical guidance, and uses caution in starting any new exercise program.

 

Exercise and types of lymphedema:

 

Lymphedema has many causes. The type of exercise that is best for an individual depends upon the severity and cause of lymphedema and other co-existing medical conditions (e.g. heart disease, diabetes, arthritis, etc).

Exercise for breast cancer-related lymphedema is the most studied lymphedema condition. Many conclusions about exercise and lymphedema are based on studies of breast cancer survivors that may or may not apply to other forms of lymphedema.

 

Lymphedema Remedial Exercise:

Lymphedema Remedial Exercise is a part of treatment for lymphedema when reduction of size of a limb is necessary. Lymphedema Remedial Exercise involves active, repetitive, non-resistive motion of the involved body part.

 

Exercise in Phase I and Phase II Complete Decongestive Therapy (CDT) (see Position Paper “Diagnosis and Treatment of Lymphedema” http://www.lymphnet.org/pdfDocs/nlntreatment.pdf) is performed with compression as an essential part of the total (complete) reductive phase of lymphedema therapy.

3-5

Lymphedema exercises, used with compression, help the body’s natural muscle pump to increase venous and lymphatic fluid return to the circulatory system and out of the swollen areas. Remedial Exercises for lymphedema are similar to some movements of low impact Tai Chi and Qigong, but are different in that lymphedema Remedial Exercise is used with Phase

I treatment of lymphedema to reduce size of the body part.

 

Lymphedema Remedial Exercise has been studied and shown to reduce limb swelling.3-5

 

It is unknown whether Lymphedema Remedial Exercise alone can prevent

lymphedema in at-risk individuals, or whether they can maintain reduction of swelling without compression.

 

Flexibility or Stretching Exercises:

Flexibility exercises include a wide range of activities that stretch muscle and connective tissues to increase and/or preserve range of motion. Flexibility exercises can minimize skin scarring and joint contractures that may lessen lymph flow. Flexibility exercises should be performed slowly and progressed gradually. Flexibility exercises are not a treatment for lymphedema, but are a part of optimal lifestyle management for reducing the complications of lymphedema. Lymphedema has a tendency to restrict motion of muscles and joints.

 

Optimal lymphatic function requires full mobility of muscles and joints. Lymphedema from cancer treatment can be associated with tight muscles and connective tissues due to fibrous adhesions from surgery or radiation. Tight muscles and scars from surgery or radiation may require Physical or Occupational Therapy to treat before attempting to do self-stretching.

Specific stretching exercises for cancer treatment-related scars and joint restrictions in an area at risk of lymphedema should be prescribed by a provider familiar with the management of lymphedema. A specialized form of stretching exercise may be required for Axillary Web Syndrome (AWS) or axillary cording, a condition that can occur in cancer survivors who have had axillary (armpit) lymph nodes removed.6

 

AWS may benefit from treatment by a certified lymphedema therapist and specific home stretches taught by a therapist.7

 

Resistance or Weight-Lifting Exercise:

Resistance exercises are usually thought of as weight-lifting. Resistance exercises may involve lifting body weight (such as push-ups) or lifting objects (such as dumbbells, weight machines, etc).

Resistance exercises can be performed without moving a joint (isometric) or by moving the joint through a range of motion (isotonic). All of these types of resistance exercise may be utilized by individuals with lymphedema, but should be done cautiously, starting with low weights, low repetitions, and gradual progression. Resistance exercises are performed against an opposing load to enhance muscle power, stamina, and tone. Resistance exercise may reduce limb volume when used as an adjunct to compression therapy8 

One study showed that guided participation in resistance exercise, as a part of a total fitness program, did not increase the risk of developing lymphedema in breast cancer patients at risk over the group who did not exercise.9

 

Lymphedema did occur in both groups. No increase in lymphedema development was noted between the exercise and the non-exercise group. There have been many studies on resistance exercise in breast cancer-related lymphedema that show no harmful effect on lymphedema and beneficial effects for overall health.10-20

 

Aerobic Conditioning or Cardiopulmonary Exercise:

 

Aerobic conditioning exercise is often referred to as “cardio” exercise. Aerobic exercise involves activity that uses large muscle groups to increase the heart rate to 60-70% of an individual’s maximum heart rate. This type of exercise, when progressed gradually, increases the heart and lung capacity while also improving muscle conditioning.

Aerobic conditioning enhances cardiovascular fitness, effective weight management, and overall health and well-being, all of which are very beneficial to people with lymphedema from all causes.10-21

 

Walking, jogging, cycling, and swimming are examples of aerobic conditioning exercise. Aerobic conditioning has not been studied formally as a treatment for lymphedema. One study showed no adverse effect on lymphedema from aerobic exercise.17

 

Resistance Exercise plus Aerobic Exercise:

Studies of combined resistance and aerobic exercise have shown no adverse effects on lymphedema.21

 

No studies have specifically evaluated resistance plus aerobic exercise as a stand-alone treatment for lymphedema. One study in breast cancer-related lymphedema showed that the individuals who performed aerobic conditioning and weight lifting had better control of their lymphedema and had fewer flares of lymphedema than those who did not exercise. However, individuals with lymphedema still had to utilize standard lymphedema therapy techniques for flares.

 

Another study about women at risk for breast cancer-related lymphedema showed that aerobic conditioning and weight-lifting reduced the risk of developing lymphedema.

 

Considerations for Designing an Exercise Program:

A number of studies have shown that aerobic and resistance exercises are safe and beneficial for people with lymphedema or at risk of lymphedema if they follow the guidelines for progressing slowly, use recommended compression, and report any adverse effects to a professional who can help them adapt their exercise regimen.9,16-21

 

Most studies on lymphedema and exercise have been done on breast cancer survivors, but the principles may guide exercise in other forms of lymphedema. Individuals with or at risk of lymphedema must report other health conditions that need to be considered in developing a personal exercise regimen (diabetes, heart disease, neuropathy, arthritis, etc).

 

Modifications of aerobic and resistance exercise that are commonly recommended for individuals with lymphedema are:

 

1) Allowing adequate rest intervals between sets; 2) Avoiding weights that wrap tightly around an extremity or clothing that cause constriction; 3) Wearing compression sleeves or bandages during exercise; 4) Maintaining hydration; 5) Avoiding extreme heat or overheating; 6) Exercising in a circuit that alters the type of exercise and body part within the exercise session.

 

Exercise and Compression Garments:

Lymphedema Remedial Exercise as a part of CDT requires compression garments or bandages.3-5 There are no studies on the use of compression garments when performing stretching or flexibility exercise alone.

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Thanks for reading… Sharon O’Hara

Continued…in Part 3b

/p


Lymphedema Risk Reduction Practices Part 2 of 3

Friday, March 8th, 2013

  Greetings!  Part 2 of 3 is the, “Summary of Lymphedema Risk Reduction Practices”

Note that “Obesity” is mentioned as a risk and I’ll have more to say about it in part 3. 

A reminder to ask your doctor – I’m a patient who believes in patient education.  Talk to your doctor.

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“Summary of Lymphedema Risk Reduction Practices

Please refer to the complete Risk Reduction document for details.

 

I. Skin Care – Avoid trauma / injury to reduce infection risk

Keep extremity clean and dry.

Apply moisturizer daily to prevent chapping/chafing of skin.

Attention to nail care; do not cut cuticles.

Protect exposed skin with sunscreen and insect repellent.

Use care with razors to avoid nicks and skin irritation.

If possible, avoid punctures such as injections and blood draws.

Wear gloves while doing activities that may cause skin injury (e.g. washing dishes, gardening, working with tools, using chemicals such as detergent).

If scratches/punctures to skin occur, wash with soap and water, apply antibiotics, and observe for signs of infection (i.e. redness).

If a rash, itching, redness, pain, increased skin temperature, increased swelling, fever or flu-like symptoms occur, contact your physician immediately for early treatment of possible infection.

II.

Activity / Lifestyle

Gradually build up the duration and intensity of any activity or exercise. Review the Exercise Position Paper.

Take frequent rest periods during activity to allow for limb recovery.

Monitor the extremity during and after activity for any change in size, shape, tissue, texture, soreness, heaviness or firmness.

Maintain optimal weight. Obesity is known to be a major lymphedema risk factor.

 

III. Avoid Limb Constriction

If possible, avoid having blood pressure taken on the at-risk extremity, especially repetitive pumping.

Wear non-constrictive jewelry and clothing.

Avoid carrying a heavy bag or purse over the at risk or lymphedematous extremity.

IV. Compression Garments should be well-fitting.

Support the at-risk limb with a compression garment for strenuous activity (i.e. weight lifting, prolonged standing, and running) except in patients with open wounds or with poor circulation in the at-risk limb.

Patients with lymphedema should consider wearing a well-fitting compression garment for air travel. The NLN cannot specifically recommend compression garments for prophylaxis in at-risk patients.”

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In part 3,  I’ll show you the two kinds of leg support stockings I use and why I like them.  There are many other support stockings out there – ask your doctor what she/he recommends.   Also, I’ll show you several tools that aid in putting them on.

Thanks for reading… Sharon O’Hara, familien1@comcast.net


Screening and Measurement for Early Detection of Breast Cancer Related Lymphedema Part 1 of 3

Friday, March 8th, 2013

Greeting!  Following is Screening and Measurement for Early Detection of Breast

Cancer Related Lymphedema by the National Lymphedema Network. 

Lymphedema and Cellulitis might well disappear one day – I hope! – if we are diligent and research continues.  It is a nasty disease … 

I am reprinting here in three parts only a smattering of information from the NLN website. 

In addition a reminder that I write here as a patient with diseases – one of them lymphedema.

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Part 1 of 3 

Position Statement of the

National Lymphedema Network

By: NLN Medical Advisory Committee

Updated April 2011

TOPIC: Screening and Measurement for Early Detection of Breast

Cancer Related Lymphedema 

Breast cancer treatment places individuals at lifelong risk for the development of lymphedema. Early identification of lymphedema is believed to yield better patient outcomes. Patient education regarding the signs and symptoms of developing lymphedema and objective measurement of arms are needed to promote early identification and to improve patient outcomes.

 

• Patient education:

 

Patients should be made aware of the need to contact a healthcare provider immediately if they begin to experience feelings of heaviness or tightness in at-risk arms; if they notice swelling in the affected area; or if the arm and/or at risk chest or truncal areas becomes hot or red.

 

• Objective measurement:

 

Pre-treatment baseline measurement of arms is essential, as this serves as the base-lined at which subsequent measurements can be compared.

 

See http://www.lymphnet.org/pdfDocs/nlnBCLE.pdf

www.lymphnet.org

 

Thanks for reading … Sharon O’Hara <familien1@comcast.net>


National Lymphedema Network urges the American College of Surgeons to …

Sunday, March 3rd, 2013

Greetings… Following is a copy of an email plea from the National Lymphedema Network to the Journal Of American College of Surgeons.

I’ve produced it here almost verbatim because I have leg lymphedema and it is one of the most painful difficult to live with diseases I have.  Last year it flared again and oozed, taking  about 10 months to heal, including a month in Harrison, a month at Martha and Mary Rehab Center, and months of my husband daily cleaning and re-wrapping my lower legs and feet.

Breast cancer survivors need to be educated to the risks of getting lymphedema.  I can promise – as a patient with lower leg lymphedema – nobody should get this disease if it can be avoided.

Patients, please talk to your doctor about lymphedema.  If she/he will not discuss it, find a doctor who will.

 

“National Lymphedema Network

In response to an article published in the March issue of the Journal Of American College of Surgeons (http://www.journalacs.org/article/S1072-7515(12)01312-9/abstract) the NLN Medical Advisory Committee is responding to a Press Release released on February 25, 2013 (http://www.facs.org/news/jacs/lymphedema0313.html)  in the Journal of American College of Surgeons, “Breast Cancer Patients Fear for Developing Lymphedema Far Exceeds the Risk

Respectfully:

Saskia R.J. Thiadens RN

Executive Director

 

“March 1, 2013

On 2/25/2013 the Journal of American College of Surgeons released a statement entitled, “Breast Cancer Patients’ Fear of Developing Lymphedema Far Exceeds the Risk.” The press release was in response to findings from a single-site study published in the March issue of the Journal of the American College of Surgeons noting that some breast cancer survivors take extraordinary measures to try to prevent lymphedema that may not be necessary. The rate of development of lymphedema in the limbs of the study patients (N=120, followed to 12 months) was similar to reported incidence in the medical literature. Three percent of patients having a sentinel lymph node biopsy developed lymphedema and 19% of patients having an axillary lymph node dissection developed lymphedema. The study indicated that patients with sentinel lymph node biopsy worried and took precautions as much as those who had axillary node dissections.

The National Lymphedema Network agrees with the statement in the press release that “future research should be aimed at better predicting which women will develop lymphedema, thus allowing for targeted prevention and intervention strategies and individualized plans for risk-reducing behaviors for each woman during and after her breast cancer treatment.” However, since this type of risk stratification and broad education does not currently exist, it is important for patients to be given accurate information by their doctors and oncology care providers on reasonable approaches to reducing the risk of developing lymphedema.

The American Cancer Society estimates that in 2013 there will be about 232, 340 new cases of breast cancer in the US and there are approximately 2.9 million breast cancer survivors in the US. If 20% of those who have axillary dissections, and, conservatively, 3% with sentinel lymph node biopsies, are at risk of developing lymphedema, this is still a very large number of women who have reason to be concerned about their risk of developing lymphedema.

Lymphedema is a progressive, debilitating condition that is not merely swelling, but an immune system dysfunction. When recognized late in its course, or inadequately treated, lymphedema leads to chronic infection and progressive disability. Women who are at risk for lymphedema have reason to be concerned and these concerns should not be minimized.

The National Lymphedema Network advocates a reasonable approach to risk reduction guidelines, given that a large population of women is still at significant risk of developing lymphedema. In the NLN Position Paper on Risk Reduction, revised in 2012 and available at www.lymphnet.org , a risk stratification approach is detailed so patients can take appropriate precautions according to their medical situation. Every breast cancer survivor deserves accurate information about her or his risk of developing lymphedema and reasonable precautions based on the available scientific evidence.

The American College of Surgeons, and all providers of care to breast cancer patients, are encouraged to provide every breast cancer patient with accurate information about lymphedema, so patients can make informed choices. Given the imperfect state of the science on risk reduction for lymphedema, there are many reasonable, healthy suggestions for patients at risk of lymphedema to reduce their risk, such as weight management and exercise. The Position Papers on the NLN website on Exercise, Risk Reduction and Screening for Breast Cancer Related Lymphedema were written by a panel of medical experts in the field of lymphology and lymphedema treatment.

The National Lymphedema Network urges the American College of Surgeons to endorse the NLN Position papers, provide them to their members, and acknowledge that a large number of breast cancer survivors are at risk of or currently have lymphedema. These patients need education and information that will allow them to take precautions that are reasonable and not excessive.  Education is the key and then what each one does with that information is a personal choice and a part of personalized health care.”

…NLN Medical Advisory Committee  *  Hotline: 1.800.541.3259

National Lymphedema Network | 116 New Montgomery St. | Suite 235 | San Francisco | CA | 94105

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Best wishes and thanks for reading …   Sharon O’Hara <familien1@comcast.net>


Lymphedema Patients toss the dice – Podiatrist or Pedicurist

Saturday, December 1st, 2012

What does it take to keep vulnerable senior patients/any patient reasonably cared for in a rehab setting?  How many oversee patients when a podiatrist comes to call and cut toenails?

Is it true that Pedicurists aren’t trained well enough for Lymphedema patients to take a chance on them.  Really?

….I believed it might be true even though I had never seen bloody toenails from a pedicurist cutting nails during my career as a cosmetologist in Washington and California and a small business owner here.  What do I know about medical things?  I’m learning that one thing can and does frequently lead into another.

The comments from a trusted Lymphedema medical professional was enough and I stopped going to a licensed pedicurist I liked who cheerfully gave me well trimmed and bright, jazzy colored painted toenails.

And, like Jacks Beanstalk, my toenails grew … until months later I overheard that a Podiatrist would be available to cut toenails – just’ line up.  I waited until mid-afternoon, then ‘got in line.’

The crowd finally thinned in the hallway. Finally, there was room inside where he and an assistant were working with patients in a semi-circle. I was escorted to an empty seat at the far end of the semi-circle facing the doorway.  Many of the patients were in wheelchairs and I noticed as he made his way around to the left of the circle, some of the people wore band-aids on their toes.   I watched him tap, tap push something against a toe then put the band aid on.  As he got closer to me, one or two chairs away I TOLD him I had lymphedema and COULDN’T GET CUT because I too easily was infected.   I had been fighting the last session almost a year.  Almost nothing, I have experienced compares to the pain of lymphedema.  Nothing.  He did not reply.

That said, many of the bare toes left behind the Podiatrist sprouted Band-Aids as he moved along past the chairs/wheelchairs.

My visions of getting up graciously, majestically and quietly walking away before he reached me did not happen.  I sat there like a stump off a log while he worked his way around to my chair and began cutting my toenails.  I didn’t say a word as he finished one foot and worked on the other.  I watched him get something and go tap, tap, push on the end of my big toe then placed a band aide over the end.  He said something as he moved away and I was escorted out of the room to the wheelchair I pushed away down the hall.  To the other end of the hall elevator and down to the next floor..  I rolled into the physical therapy room where I had an appointment and told the therapist what happened.  I was shaking and she said she would find the nurse on duty when I couldn’t tell her how bad it was – only that he cut my toe.

The nurse pulled the Band-Aid away to see it and said ‘that’s not bad.’  The trouble with Lymphedema – for me, if not most of us – a simple scratch or bruise can develop into a big deal infection.

In addition, I mentioned to her the room upstairs was full of Band-Aid covered toes on patients – some in wheel chairs.  What if they got infected and had to UNNECESSARILY deal with infection caused by cuts on their feet from a podiatrist?  I suggested they check the patients.

I asked her to take photos for me because I couldn’t see it.  The photos were taken, the Band-Aid replaced and I had my physical therapy session.

To be absolutely clear.  I was loaded with antibiotics at the time.  My toe healed nicely.  No lawsuits then or now.  I don’t know how the other patients faired.

My point here is to ask  how you know your loved one is not being cut leading to an infection when a trained podiatrist cuts their toenails.  You don’t know.  Go watch a time or two – check these things out.

Patients be aware – patient centers too.  Make sure that podiatrist is competent.

Who is watching?

Thanks for reading… Sharon O’Hara


Dr. Halligan, Harrison Medical Center, Lymphedema Update – Part 3 of 3

Saturday, June 2nd, 2012

Thanks to four weeks at Harrison Medical Center Bremerton, Dr. Halligan, Doctor’s Clinic Silverdale and Martha & Mary Rehab Center in Poulsbo and my husband, Chuck, the latest annoying, painful Lymphedema outbreak is almost healed.

I hope with continued use of support stockings, I will never again see the open, painful weeping sores running down my lower legs.

Ignoring edema can lead to nasty painful Lymphedema outbreaks – not a place to go, folks – listen to your doctor.

The last two Lymphedema lesions might have healed months ago had not RLS or whatever the problem is, not raised havoc then and now forcing me to stand and move – the direct opposite of what I needed to do.

Following is Lymphedema By the Month Photos – from September 2011  to date.

And to think – it all started with Chronic Obstructive Pulmonary Disease after a forty year smoking history.

Thanks for reading…Sharon O’Hara


Dr. Halligan and Harrison Medical Center Angels, Part 1 of 3

Wednesday, February 1st, 2012

I am writing this from a hospital bed on the cancer floor at Harrison Medical Center in hope someone will take note what edema can and may do to those who ignore it.

Also, I’m writing in heartfelt thanks to Dr. Halligan, Internist/Surgeon at Silverdale Doctor’s Clinic who saved my life and leg recently by taking over failed treatment for my Lymphedema/Cellulitis/Edema filled legs and painstakingly, day after day treated and changed leg wraps.

Dr. Halligan patiently explained my left leg needed debriding to remove the dead skin, much as burn victims and he couldn’t tell what was under the surface dead skin or how deep the dead tissue went. This four-month pain riddled sleep deprived patient gratefully lay in a bed at Harrison Bremerton 23 hours a day, 7 days a week. Four weeks total this Thursday.

Tomorrow, Wednesday, I am moving to a rehab place for rehabilitation and further healing.

I battled without success since early September the Cellulitis/Edema in my left leg until my right leg reddened with infection and edema and began the water blisters that experience taught would lead to lymph fluid running down my lower legs, scalding the skin it touched and spreading the poison…

Chris Goss, MD, my lung doc at the University of Washington Medical Center straightened out the Restless Leg Syndrome medication problem so I could sleep if the pain eased.

Edema patients  – PLEASE – check out the following photos of the latest rise and fall of my edema filled legs and ask yourself if ignoring edema is worth it.

Dr. Halligan – thank you!

More next time on Harrison Medical Center’s Angels in disguise.

….thanks for reading.  Sharon O’Hara

Thanks for reading…Sharon O’Hara


Surgery – New Hope for Lymphedema Patients

Wednesday, December 14th, 2011

Lymphedema patients have a new surgery option for arm and leg swelling – would it be available to seniors?

How much is the cost of it compared to the standard treatment that doesn’t work all that well?

Who is a good candidate for the surgery?

 

“LITTLE ROCK – The University of Arkansas for Medical Sciences (UAMS) is the first in Arkansas and one of a handful of medical centers in the country offering a new surgical alternative to treat lymphedema, the chronic arm swelling frequently associated with breast cancer treatment.

 

The unique microvascular procedure at UAMS is performed by Mauricio Moreno, M.D., who learned the new surgery during his advanced training in microvascular reconstructive surgery prior to joining UAMS in 2009.

 

The surgery is the only permanent, effective treatment for lymphedema, which is caused by damaged lymph nodes that can no longer cycle excess fluid out of the arms and legs. In the United States the condition usually is a side effect of mastectomy or radiation therapy that compromises the lymphatic system. The result is swelling, numbness, discomfort and a high risk of infection.

 

Valerie Davis, of Smackover, the first lymphedema patient to have the surgery at UAMS, said the swelling from her mastectomy four years ago was disabling because it restricted the use of her left arm.

 

“The swelling was outrageous, even when I wore the compression sleeve,” Davis said. “It was really aggravating; I couldn’t lift things like I wanted to.”

 

Patients with lymphedema commonly see about a 20-40 percent reduction in swelling using massage and compression therapy, the traditional treatment for lymphedema. Such therapy involves extensive massaging to push the fluid from the extremities back to the torso. It is a temporary solution that has to be performed regularly because lymphedema does not improve over time – it only gets worse.

 

Davis said she tried the traditional treatments, which helped some but were a big inconvenience. When she heard about the new procedure, Davis said, she couldn’t pass up the chance it would bring relief.

 

Dr. Moreno told me it had a 70 percent chance of working, so I took the 70 percent,” she said, adding that she’s happy she took those odds.

 

Davis saw an 81-percent reduction in her arm swelling within a month from the procedure.

 

“It was worth it,” she said. “I’m doing so much better now, and Dr. Moreno said the swelling would likely continue to go down.”

 

Lymphedema surgery involves connecting tiny lymphatic vessels to tiny blood vessels (less than 1 millimeter), giving the excess fluid a new pathway out of the arms or legs. The surgery was developed in Japan in 2003, and Moreno learned it from a surgeon who brought it to the United States from Japan.

 

Because the surgery is so new in the United States, its cost is not covered by insurance, Moreno said….”

http://www.uamshealth.com/News/NewSurgeryatUAMSProvidesDramaticReductioninArmSwellingforLymphedemaPatients?id=5350&showBack=true&PageIndex=0&cid=4

Thanks for reading… Sharon O’Hara


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About This Blog

This is a patient to patient blog to exchange information and resources...from COPD (Chronic Obstructive Pulmonary Disease) to Arthritis to Cellulites to Sarcoidosis to Sleep Apnea to RLS to Psoriasis to Support Groups to Caregivers and all points in between. Written by Sharon O'Hara.

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