The beginning

Footprintsangel and I have decided to open up a special area here on this forum for people suffering from lymphedema - after cancer treatment.

We would like to place articles here with information about the causes, the symptoms, what to expect and what can be done to reduce or cure lymphedema.

I am very happy to be able to help Hamsa open a forum for people like me that have lymphedema, And want to learn more ways to make life easier to live with lymphedema. Theres alot of people with alot swelling after breast cancer or no cancer(but swelling) dont know why. I am very happy to that Hansa cares for lymphedema people. So feel free to ask anything. Life is Good, Debbie

Something to start the forum off:

Patient Attestation Regarding Access to Lymphedema Therapy
for Medicare Beneficiaries

The Problem: Lymphedema is a major medical condition, affecting between 3 and 5 million people in the U.S. Lymphedema causes swelling of body parts, most often women after undergoing surgery for breast cancer, but can also affect men after treatment of prostate cancer. A smaller number of patients are born with the disease. There is no cure for lymphedema. Treatment consists of a therapy called Complex Decongestive Therapy (CDT), which includes Manual Lymphatic Drainage which in which the lymphatic fluid is redirected to move it back into the circulatory system by a special massage technique. CDT encompasses compression bandaging, proper skin care, and patient education in order to decrease complication rates.
Lymphedema therapists obtain special training which is not part of the usual training and licensing for any medical professional, including physical therapists (PTs) and occupational therapists (OTs). Licensed medical personnel (including massage therapists) are eligible to sit for an exam to become certified by the national certifying entity, the Lymphology Association of North America (LANA). This certification requires at least 135 hours of special education and training. This education is in addition to the basic education for their licensure as physical therapists (PTs), occupational therapists (OTs), licensed massage therapists (LMTs), and nurses (RNs, LVNs). There are currently 4,400 adequately trained LE therapists in North America, but 15 years were required 15 to build this pool of therapists.

A Crisis of Access for Lymphedema patients occurred due to implementation of Section 230.5 “Physical Therapy, Occupational Therapy and Speech Language Pathology Services Provided Incident to the Services of Phyicians.” In this ruling, Medicare ceased to recognize LANA certified therapists who have adequate training according to international standards for lymphedema treatment. At the same time, Medicare allows any PT or OT to bill for lymphedema services, although no PT or OT school in the country provide adequate training for certification in lymphedema treatment.
As patients, we strongly feel that Medicare has erred in this ruling by deeming qualified those who are not trained, and deeming unqualified those who are adequately trained, even when under the supervision of a physician knowledgeable in the field of lymphology. This has caused the closure of more than half the lymphedema centers in the U.S. and perhaps even more, and has severely affected access to care for patients like us with this rare disorder who already had difficulty finding trained caregivers. In the absence of qualified care-givers, we are likely to suffer an increase in complications such as infection, reduced independent living, and hospitalization, all of which increase the cost to the Medicare system.

The Solution:
Medicare should put a two year moratorium on the above ruling, and move toward a grandfather period of five years duration whereby Medicare recognizes LANA certified therapists as qualified to provide treatment, and Medicare will reimburse for care provided by LANA certified therapists. We believe this is the only way to avoid a crisis of access for Medicare beneficiaries like us who need MLD treatment.

Name: ______________________________ Address: ________________________________

Lymphedema in the news:

Local minister dealing with wife's illness

Submitted Photo Carrie and David Sparks have been married for 42 years, a union that has remained strong even though she has been receiving treatment at a facility in Ohio for more than a year due to a severe stroke.

Published: Sunday, April 27, 2008 9:47 PM CDT
Tom Joyce

Staff Reporter

David Sparks now knows the way from Mount Airy to Toledo, Ohio, almost by heart.

That's not because Sparks is a long-distance trucker or a traveling salesman whose route encompasses the Buckeye State.

Instead, he pastors Flat Rock Pentecostal Holiness Church, and the 500-mile trips he regularly makes to the Toledo area result from his wife, Carrie, being housed there for more than a year after a major stroke.

“Just two years ago, I would have never dreamed I would be traveling 500 miles up the road to be with my Miss America,” Sparks said. “That's what I call her.”

At first, Sparks, who has been with Flat Rock Pentecostal Holiness Church for 14 years, made the journey each week to be by his wife's side, while also juggling his duties as pastor. But due to “pure exhaustion” and the expense involved, he has had to stretch that out to every other week, or more frequently as the need arises.

When asked how many miles he has driven over that time, Sparks replied, “probably 52,000, is what I estimated.”

The local pastor admits that the strain of being so far away from his wife of 42 years, not to mention her serious medical condition itself, occasionally has been hard to handle.

“At times, I have felt like, why me, Lord?” he said. “But as time goes on, those thoughts pass on by more than they did. Instead of ‘why me?' I think, ‘why not me?'”

When he gets down in the dumps over the situation, Sparks said he reminds himself that “it's not about me - it's much bigger than me.

“If the shoe were on the other foot,” he added, “my wife would be just wonderful.”

Problems snowballed in 2006

Sparks remembers the date of Oct. 18, 2006, well. On that day, Carrie Sparks - a mother of two who sustained a series of mini-strokes in the late 1990s while in her 50s - suffered a serious stroke.

She initially was a patient at Forsyth Memorial Hospital in Winston-Salem, before spending time at a rehabilitation facility in Greensboro and later Blue Ridge Nursing Center in Stuart, Va.

Then, in January 2007, the local woman suffered another setback when her kidneys failed completely, which has required dialysis treatments three days a week for four hours at a time. “She'll be on dialysis the rest of her life,” her husband said.

Also during that winter, a federal judge in Greensboro declared Carrie Sparks legally blind.

“At that point, it became necessary to find a long-term care facility that could deal with Carrie's health problems,” her husband recalled.

In addition to the vision and other difficulties, including being unable to walk, she was afflicted by diabetes and lymphedema, a condition involving a breakdown of the lymph system in which fluid builds up throughout the system. Such a facility also had to be within close proximity of a dialysis center.

An Internet search revealed two locations in the United States where Carrie Sparks' various physical needs could be met - one in Roanoke, Va., and the other in Gibsonburg, Ohio, about 22 miles from Toledo.

Naturally, the facility in Roanoke was the first choice, “but they had a long waiting list,” Sparks said.

So the decision was made to have his wife treated at Windsor Lane Healthcare Center in Ohio, while also adding her name to the list in Roanoke.

“They have really done her good - it's a world-class facility,” Sparks said of the Gibsonburg center that serves patients from across America. “We feel blessed for her to be there.”

Carrie Sparks was admitted to the Ohio center on Easter Sunday, March 23, 2007.

Then began the regular trips back and forth to Ohio by her husband, who said that he sometimes does not have a choice about his travel plans. Since Sparks has power of attorney for his wife, he must be present for doctor consultations and similar situations.

“That stroke left her unable to communicate well, so I have to communicate for her,” the veteran pastor said. The stroke also impaired her memory, so Carrie Sparks, who recently has experienced heart difficulties as well, would have difficulty remembering what the doctors say.

She can talk, but her oral skills have been affected by the severe stroke to the point that she is not able to describe objects, or sometimes identifies them by the wrong names.

Yet, Carrie Sparks has managed to make it clear that she is comfortable and satisfied with her care. “She has really settled in well to the facility,” the pastor said.

The Sparks family also includes the couple's son, Chris; their daughter, Sherry Tipton, and her husband, Darrell; and the Tiptons' young children, Timothy and Tiffany.

The grandchildren have been on some of the trips to Ohio. “That's the best medicine she gets all week, is when they show up in her room,” Sparks said.

“She is happy - that has meant so much to me and the family,” he added. “The Lord has given her contentment and maybe patience. I don't know what else. But whatever it takes, the Lord has given it to her.”

Ordeal brings blessings

Sometimes, good does come from bad things, and David Sparks says that in his case, he has been strengthened and encouraged by the support from his congregation at Flat Rock Pentecostal Holiness.

“This church has really pulled together,” he said. “They have distinguished themselves, and I am so immensely proud of my wonderful congregation.”

A retired minister friend, the Rev. Deward Scott, has delivered sermons in Sparks' place when he has had to be in Ohio. “He's very dependable, and a great, great friend,” Sparks said. “I just can't say enough about Deward Scott.”

Meanwhile, two couples at the church, Haywood and Alyene Young and Buster and Sharon Davis, were recruited for those occasions when the pastor ministers to congregation members who are hospitalized for surgery or other crises.

“They eagerly accepted my request,” Sparks said. “They go in with the patient and family until the surgery is over, just like I would do if I was here.”

The pastor also said that people in the church will call him on his cell phone to keep him company during the long journeys to Ohio, which involve driving on Interstate 77 almost to Cleveland, then heading west on the Ohio Turnpike. “They'll call me all the way up the road.”

Buster Davis once talked to Sparks for such a lengthy time during one trip that Sparks said it was if he had picked up a hitchhiker along the way. Davis later told Sparks' children about their father's experience with his “hitchhiker,” which “flabbergasted” them until they heard the full story.

“So it was kind of neat,” the Flat Rock pastor said.

In praising the support from his congregation, Sparks said he “is grateful for the way the church has rallied together in this highly unusual chapter in the life of this family, and the life of the Flat Rock Pentecostal Holiness Church.”

Among other blessings emerging during the ordeal have been friends he has met in Ohio. “There are great people everywhere,” Sparks said.

The local resident said he can identify with the situation of a well-known Bible figure, Job, who was faced with all kinds of hardships. But the key was how Job dealt with them.

“Job responded in such a marvelous way,” said Sparks, who hopes to also “respond in a way that will glorify the Lord.” This includes possibly serving as an example to others undergoing a similar crisis, so they can forge ahead with life.

Sparks agrees that in the course of his wife's illness he has found strength within himself that he never knew was there.

“It just constantly amazes me.” http://www.mtairynews.com/articles/2008/04/28/news/ local_news/local04.txt


Contact: Wendy Lau This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
212-845-4272
Russo Partners, LLC

Preoperative assessment of cancer patients enables early diagnosis, treatment of lymphedema
NIH, National Naval Medical Center, George Mason University study published in journal Cancer demonstrates importance of physicians' shift to baseline measures and ongoing 'surveillance' model for successful management of common, debilitating condition
BETHESDA, Md., April 30, 2008 – The preoperative assessment of breast cancer patients for subclinical lymphedema enables clinicians to establish a baseline, which serves to enable the early diagnosis and successful treatment of the debilitating condition, according to data from a five-year study published this week in the online edition of the journal Cancer (http://www3.interscience.wiley.com/cgi-bin/abstract/ 118821880/ABSTRACT).

In a study conducted by the National Institutes of Health (NIH) and the National Naval Medical Center, in collaboration with faculty and students from the University of Michigan-Flint and George Mason University, researchers measured the upper limb volume of 196 newly diagnosed breast cancer patients from 2001 to 2006 to establish a baseline prior to surgery. At designated postoperative intervals, the researchers took repeated measurements as part of a “surveillance” model to monitor for possible impairments related to breast cancer treatment--such as lymphedema--as opposed to treating therapy-related problems after they occur. Using the surveillance approach, the investigators demonstrated that a short trial of compression garments effectively treated subclinical lymphedema when it was detected early. Forty-three, or 22 percent, of the 196 breast cancer patients in the study developed subclinical lymphedema, as defined by a change in limb volume of >75cc; and all subjects showed a significant mean volume reduction to very near their pre-surgical “normal” state. All subjects were able to maintain this level for an average of 4.8 months, and none of the patients demonstrated progression of the condition in the follow-up period.

Steven Schonholz, M.D., a breast surgeon and medical director of the Breast Cancer Center at Mercy Medical Center in Springfield, Mass., added: "The problem with lymphedema is that there hasn’t been an easy way to detect the condition before it is apparent to the doctor and patient. Today there are new, non-invasive methods that have enabled me to identify the condition and begin treatment long before the patient is aware of a problem. If patients aren't treated at the earliest possible indication of lymphedema, it is less likely to be effectively treated, and the condition may require life-long costly treatment and, more importantly, have an enormous impact on a woman's self-esteem, function and quality of life."

While there is no standard tool used to assess the condition, physicians have relied on tape measures and water displacement to track changes in limb circumference and size as well as on patients to report changes in upper extremity mobility. Several diagnostic tools are able to accurately track minute changes in extracellular fluid to allow for the earliest possible detection. These include bioimpedance spectroscopy devices, which use an electrical signal to assess fluid changes in the body.

"Optimal management of lymphedema requires diagnostic tools that are sensitive to subclinical changes in tissue," said Dr. Schonholz, who uses an FDA-cleared low frequency bioimpedance device developed by ImpediMed Inc. in his practice.


###
About Lymphedema

Lymphedema is a condition that can cause significant swelling of the upper and lower extremities due to the build-up of excess lymph fluid. This can occur when the lymphatic system, which is responsible for draining excess fluid from the body and is a key component of the immune system, is damaged or altered. In breast cancer patients, this can occur after surgery, such as removal or biopsy of the lymph nodes, and/or radiation therapy. It is estimated that 6 percent to 40 percent of patients with breast cancer develop lymphedema, and that it often occurs within the first two years after surgery. For some cancer survivors and others at risk, a low level lymphedema can occur 10 years to 15 years following the initial primary treatment and develop into a condition that has a serious impact on overall health and quality of life. For more information about lymphedema, visit http://www.nci.nih.gov/cancerinfo/pdq/supportivecare/ lymphedema/patient http://www.eurekalert.org/pub_releases/2008-04/rpl- pao042908.php



Ann Dermatol Venereol. 2008 Apr;135(4):299-303. Epub 2008 Mar 20.Related Articles, Links
[Intravascular B-cell lymphoma with febrile inflammatory lymphoedema of the lower limbs and lower back.]

[Article in French]

Pallure V, Dandurand M, Stoebner PE, Habib F, Colonna G, Meunier L.

Service de dermatologie, groupe hospitalo-universitaire Carémeau, rue du Professeur-Robert-Debré, 30900 Nîmes, France.

BACKGROUND: Intravascular lymphomas are diffuse large-cell lymphomas belonging to a group of high-grade non-Hodgkin's lymphomas and are generally of phenotype B. They are rare and carry a severe prognosis. Clinical polymorphism is dominated by neurological and cutaneous involvement. PATIENTS AND METHODS: We report the case of an 80-year-old woman with cutaneous intravascular B-cell lymphoma as revealed by an isolated episode of febrile bilateral inflammatory lymphoedema. Following combined chemotherapy with rituximab and mini-CHOP (cyclophosphamide, adriamycin, oncovin and prednisone), complete remission was obtained rapidly, with no relapse at two years. DISCUSSION: Diagnosis of these tumours is rendered difficult by the clinical polymorphism and multifocal nature of lymphocytic proliferations. In the present case, diagnosis was based on histology results since presentation of the disease in the form of bilateral inflammatory oedema of the lower limbs is not sufficient to establish lymphoma. Combined rituximab and polychemotherapy comprising a CHOP regimen appears to yield the best results.

PMID: 18420078 [PubMed - as supplied by publisher] http://www.ncbi.nlm.nih.gov/pubmed/18420078? dopt=Abstract
http://www.kvnews.com/articles/2008/04/22/news/ doc480cf60ddee0e251942469.txt

ELLENSBURG – Marian Reichelt of Snohomish is no stranger to fishing, she just never has done it quite like she did Saturday on the Upper Yakima River.

She’s fished lakes and streams for salmon and steelhead alongside her husband in the Lake Chelan area, but she’s never fly fished with 11 other women, all breast cancer survivors, many of whom would never think to step into a rocking drift boat on a chilly, unseasonable spring day.

Yet the women did just that. Twelve of them, all patients of Northwest Hospital in north Seattle, along with selected hospital staff and local fishing guides, sought the wily trout in nine boats most of the day Saturday.

The Puget Sound-area women were given the fly-fishing experience free as part of a twice-a-year outing that’s into its fourth year thanks to Northwest Hospital and, this year, due to generous donations from doctors and specialists.



“It’s something I’d always wanted to try,” said Reichelt, 50, as she got ready to leave the Yakima River Fly Shop in downtown Cle Elum Saturday morning with her guide for the trip to the push off point. “It’s been on the top of my list of things to do for quite a while.”

Reichelt, for quite a while, has been occupied, to say the least.



For the past four years she’s been on journey of survival that’s included a mastectomy, repeated rounds of what she called “aggressive chemotherapy” and radiation treatment.

“I’m doing some added treatment, but I can say I’m cancer free right now,” Reichelt said. “When I look at it all, I believe it’s made me a stronger person.”

Therapy

Using fly-fishing as physical therapy for strengthening is part of the goal of the outings that were started by Dr. Sandra Vermeulen, a radiation oncologist at Northwest Hospital.

The physical work of casting a fly with rod in hand exercises the arm and shoulder in such a way that it steers the women away from a common side effect of breast cancer treatment.

The side effect is lymphedema, a painful swelling in the arms and upper body that can lead to permanent loss of mobility. About one in five women who’ve had breast cancer will get lymphedema, but exercise is one way to prevent it or lessen its impact.

Vermeulen said she’s been an avid fly-fisher for many years, and the Upper Yakima is one of her favorite spots.

“All of these women have had surgery and some very hard treatment,” Vermeulen said Saturday before heading on to the river. “These are some pretty tough ladies; they’ve been through a lot.”

She said in addition to the therapy, the beautiful, riverside scenery, the friendship of other women and the excitement of fishing helps the women “refocus their lives. They see that life can still be great out there.”

Local help

With the support of Northwest Hospital, Vermeulen started the biannual trips with the help of local fishing guide Charles Cooper of Cle Elum and Yakima River Fly Shop owner/guide Jim Gallagher.

The two men help organize the trip’s logistics, and each travels to Seattle the week before the trips and gives a five-hour fly-fishing lesson to a portion of the women.

The men each bring a drift boat along to their lesson and drag it on to the grass at the Seattle hospital’s campus. The women get a feel for what being in a small boat is all about while fly-casting at the same time.

Cooper said women ranging from 30 years old to nearly 70 have been on the trips. Nine fishing guides accompanied the women.

“These ladies have just survived probably the most traumatic experience of their life,” Cooper said Saturday. “For me, I want to give them a great adventure, and I want them to enjoy the camaraderie of other survivors.”

He said assisting the women is personal for him: his mother is a breast cancer survivor.

For Jim Gallagher, it’s personal, too. Before heading to the river Saturday morning, he said his mother died from breast cancer.

“I grew up in a fly-fishing family; all of us fished together,” Gallagher said as his voice softened. “My entire life has been involved with fly-fishing.”

Sisterhood

Reichelt said she jumped at the chance to fly-fish with a guide when her doctor offered her the invitation.

“It’s really a neat experience on the river, especially with these other women who have an experience in common,” Reichelt said. “You could say we’re a band of survivors, a sisterhood. If you haven’t gone through cancer treatment you can’t really understand what one really goes through. It’s so hard to explain.

“We’ve all faced the same situation. I guess we’re all in the same boat, so to speak. We’ve been through the whole thing and made it back.”


A stitch in time brings relief
PATRICE ST. GERMAIN This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

ST. GEORGE - Sewing machines whirred as members of the American Sewing Guild put together "anti-ouch pouches" at the local Bernina store on Friday.

The pouches are pillows that hang from the shoulder and fit snuggly under the arm to provide a cushion and keep the arm away from the body after breast surgery or during radiation treatment.


ADVERTISEMENT

The pillows will be inclu-ded in post-mastectomy care kits given to patients at Dixie Regional Medical Center.

"The pillows are something very simple but it has great importance for our post-mastectomy patients," Lorraine Moe said.
Moe is an occupational therapist and certified lymphedema therapist working in the Dixie Regional Medical Center rehab services center.

She said a lot of times after mastectomy surgery, patients have edema - fluids caused by the surgery - and have drains in place, which cause pain and tenderness in the area around and under the arm.

The pillow prevents friction against the tender area and Moe said not only does it help reduce the pain, but it comforts the patient.

"Because a drain can be there several days, up to a couple of weeks, the pillow is more of a sense of comfort knowing that the area is not rubbing," Moe said.

Moe said for post-mastectomy patients, even something as simple as vibration from sitting in a car may cause pain in the surgical area.

Ruthann Adams said the local sewing group is made up of members of the St. George Neighborhood Branch of the Las Vegas Sewing Guild, which is part of the American Sewing Guild.

Frequently, the group gets together to make items such as the anti-ouch pillows as projects to help members in the community.

As a breast cancer survivor, Adams knows how important the pillow can be.

The pillow was designed by Deon Maas, a breast cancer survivor and member of the American Sewing Guild.

The local guild is always looking for new members.

For information about the American Sewing Guild, visit the Web site at http://www.asg.org . Information about the St. George Neighborhood group is part of the Las Vegas Chapter. Information about that chapter may be found at http://www.lasvegasasg.org .
http://www.thespectrum.com/apps/pbcs.dll/article?AID=/ 20080505/NEWS01/805050302

What is Lymphedema?

Lymphedema is broken down into 2 words. Lymph which is the colorless to milky colored fluid in your body. Edema, which means swelling. Lymphedema occurs when fluids build up in the soft tissues of the body. Lymphedema is pronounced: Lim-fee-dee-ma. It can be spelled a variety of ways such as lymphoedema, lymphadema, etc. All the various spellings mean the same condition.

There are 2 basic types of lymphedema.

1. Primary, heredity, sometimes called Nonne Milroy's Disease or Meige's disease which means you are/were born with it.

2. Secondary or acquired, which means it came from a cause such as surgery, trauma, injury, etc. Lymphedema can appear directly after surgery or trauma's or even 20 years down the road.

Filariasis is the infestation of the Brugia malayi parasite through mosquito or fly bites.

Lymphorrhea is the laking of lymph that has ruptured through the skin from skin breakdowns.

Self induced lymphedema is very rare but reported in which a tourniquet creates a fibrotic ring that causes fluid build up.

Mayall's syndrome is extremely rare, caused by an arteriolo-venular shut which causes the development of peripheral disease.


There are several stages of lymphedema.

Stage 0: subclinical or latent stage.

Stage 1: Completely and spontaneously reversible lymphedema. Lymphedema is considered chronic after 3 months.

Stage 2: Spontaneously irreversible lymphedema. Edema persists for some times and fibrous tissue forms.

Stage 3: Irreversible lymphedema. Very hard edema with no skin movement. Much fibrosis and hard skin. Can be loss of joint movement and mobility.

Edema is said to be pitting when your finger impression remains on the skin after pressing down.

Lipedema involves the accumulation of fat in the tissues. Lipedematous tissue may cause true lymphedema which results in the term lipolymphedema.

Myxedema is the accumulation of mucinoid substances in the extracellular compartments from thyroid dysfunction. Areas involved include the shins, eyelids, back of hands.

Hydrostatic pressure refers to the pressure of fluids against the resistance of a vessel wall or tissue. High levels of fluid can result in high blood pressure. The connection between edemas and blood pressure can be intertwined.

SYMPTOMS AND SIGNS OF LYMPHEDEMA:


Puffiness, stiffnes, fatigue, discomfort, tightness, pressure, heaviness, pain, numbness, hard thickening skin, loss of motion, skin folds, and weight increase for no reason.


CONDITIONS ASSOCIATED WITH LYMPHEDEMA:

High blood pressure, heart problems, enous problems, diabetes, thyroid conditions, inflammations, infections, hormonal conditions and auto-immune conditions.

HOW IS LYMPHEDEMA DIAGNOSED?

In cases where patients might be suffering from a mixed form of edema's, a lymphoscintigraphy may be used. It's called the gold standard of diagnostics. There are many variations with different tracers, different injected amounts of dye. It must be done by a skilled examiner. CT, MRI, dopplers, ultrasonic devices, and C-scans may be used as well. A venography may be needed to rule out blood clots. In any case there is risk of reaction to the tracers/dyes used and/or infections. In most cases physical examination and patient history are used to diagnose lymphedemas.


SYMPTOMS:

The symptoms of lymphedema vary from individual to individual. Some common symptoms include:

A feeling of fullness, heaviness, or tight skin in an arm or hand

Pain or aching

Jewelry such as a watches, rings or bracelets that feel too tight

Shirt sleeves or cuffs or pants that feel too tight

Weakness, fatigue, or decreased flexibility in the fingers, hand or wrist, ankles, toes.

Redness, visible swelling, or signs of infection in any part of the limb

Preventing and managing lymphedema boils down to just a few simple rules and some do's and don'ts.

The biggest thing to remember is to avoid injury or irritation to areas prone to or affected by lymphedema.

Injuries and irritation include: Falls, bruises, bumps, slivers, bug bites, scratches, hives, bee stings, sunburn, razer irritation, repetitive injury, over exertion, burns, too tight clothing, and being in one position too long.

Hope that helps you guys get started off. I'll be getting an article from Professor Miles regarding the lymph node transplants in August which I'll send to one of you to post up. great topic and great job you 2!

hugs, Tina

Dear Tina, Thanks for your support, I am trying to let people know that lymphedema is not weight gain from water or like I was told to loose weight. I have lost alittle, But my lymphedema is not goin to go away. Its needs to be treated. I thank you and love group. Thanks again. Hugs Debbie

Has anyone heard of using sesame oil for dryness or doing a massage on the lymphedema and I found out theres a card for my wallet or purse that tells people I have Lymphedema Take care, Debbie

Hello Friends, Its hard to believe all the work it takes to get help. Many of you are fighting the same battle with the medical field. Sometimes we must be strong and prove the Lymphedema is something that the Drs need to learn more about the dangers of not helping us. Please remember to fight and prove we are in need of good care to stay well and save money. To all people with lymphedema, We can make it! Take care Debbie

[quote]There is no cure for lymphedema[quote]




Tina, from the first article you placed here: it unacceptable to me. Sorry. Billions of dollars are spent on any other illness trying to look for a solution, so I just cannot accept that they would raise their hands on this.


I cannot accept that physical therapy is the answer... this is an illness or stems from the consequences of an illness, a medication MUST be found. I hope people, suffering from lymphodema will never rest and pressure the medical world to look for a solution that doesn't send them away with stories, but provide medicines that will counter their suffering.

Post edited by: Hamsa, at: 2008/05/11 15:18

footprintsangel wrote:

Hello Friends, Its hard to believe all the work it takes to get help. Many of you are fighting the same battle with the medical field. Sometimes we must be strong and prove the Lymphedema is something that the Drs need to learn more about the dangers of not helping us. Please remember to fight and prove we are in need of good care to stay well and save money. To all people with lymphedema, We can make it! ;) Take care Debbie

Yes, Debbie. It is all too easy to send people away in circles with excuses. I also think that forcing the medical world to look at lymphodema will finally bear results. Never let yourself be pushed into a corner and suffer, being made out as if all this is due to something else than a true real existing illness.

footprintsangel wrote:

:) Has anyone heard of using sesame oil for dryness or doing a massage on the lymphedema and I found out theres a card for my wallet or purse that tells people I have Lymphedema Take care, Debbie

I heard that placing the affected areas up above other parts of the body is 'helping' reduce the swelling...

What I wonder though is, is there any connection to the functions of the kidneys, the organs that are responsible for the proper absorption and disposal of fluids?

Dear Friends, I found out that you can order bracelets for lymphedema at www.lymphedema.com Kelly Bellemore Phone 1 800 293 3362 ext 214 I hope this helps someone. Happy Mothers Day! Take care,Debbie

Post edited by: footprintsangel, at: 2008/06/02 05:05

Good Numbers to remember for Help with Lymphedema
American Cancer Society 1-800-ACS-2345 www.cancer.org
Anerican Physical Therapy, Association,Oncology Section
1-800-999-2782; www.oncology.org
National Cancer Institute Cancer Information Service
1-800-422-6237; www.nci.nih.gov
National Lymphedema Network
1-800-541-3259; www.lymphnet.org
The Susan G Komen Breast Cancer Foundation
1-800-462-9273; www.breatcancerinfo.
Y-ME National Breast Cancer Organization
24 Hour Hotlines 1-800-221-2141 Spanish 1-800-986-9505
www. y-me.org

Dear Friends I will be walking the Relay for Life Thursday and Friday. And will remember all my friends online. I was told by my PTherapies that I have to wear my full body garments on those days. I was hoping for a different answer. But I am thankful each walk I can do. Hang in there, Debbie

Post edited by: footprintsangel, at: 2008/05/14 03:30

Insurance Coverage
If you have physical therapy or occupational coverage, managed care can limit the amount of coverage for lymphedema.Many managed care programs have a limit on physical therapy benefits,i.e.a $1,ooo maximum,$2.ooo Maximum,etc. Each person should read their benefits manuals closely and if possible, Switch to a health insurance that has no maximum on physcial therapy. Some insurance companies will reimburse patients for their bandages and compression sleeves, If they submit a doctors prescription and receipt. The prescription should read,"purchase bandages/ compression garments for lymphedema management* If the person has a limition on their physical therapy coverage, Sometimes a letter of explanation by their physical therapist or physician is needed to obtain coverage. It may be difficult to receive insurance coverage or reimbursement for lymphedema treament by a massage therapist, As they are considered alternative health care.

Remember that lymphedema is a lifelong condition. It can be compared to heart disease,diabetes,lupus,or arthritis. Lymphedema must be managed on a daily basis and there will be situations in which the lymphedema may have acute flair up. Your physical therapist should educate you on what symptoms to watch for and how to manage these symptoms should a flare up occur. On occasion, Independent management of lymphedema flare up is not enough, And further physical therapy may be necessary.

Post edited by: footprintsangel, at: 2008/05/15 06:44

Precautions
USE COMMON SENSE, THESE PRECAUTIONS HAVE NOT CHANGE IN 40 YEARs
1. Avoid allowing skin openings to occur,ie cuts scrapes,burns,bug bites,bee stings, pin pricks etc. If a skin opening occurs, Apply an antibiotic ointment and cover immediately. Keep the opening clean and covered.
2. Do not have injections, vaccinations, flu shots, blood draws, IV placements,or blood pressure taken in the affected extremities.
3. Keep the skin clean and dry.
4. Utilize antibacterial and hypoallergenic soap to wash extremities,
5. Keep cuticles moist with cream or lotion.
6.Push cuticles but do not cut them.
7. Do not shave the affected extremity, arm pit or bikini area. If you must shave it is recommended to use a electric or battery operated shaver. With a narrow head rather than a straight razor. Under no circumstances does one use depilatory(hair removal) creams.
8. Use insect repellant as necessary to prevent insect bites and stings, If a bee stings you, Try to remove the stinger and apply antibiotic ointment and cover immediately.
9. Be careful of a pet scartches/bites.
10. Always wear compression garments when exercising.
11. Avoid saunas,hot tubs, sunbathing,or overheating. Be careful around and handling floor heaters.

Post edited by: footprintsangel, at: 2008/05/16 06:39

Post edited by: footprintsangel, at: 2008/06/02 05:12

Overview/History
Until the early 1990, Lymphedemea treatment in the United States consisted primarily of compression pumps and compression garments. In contrast,Europe has treated lymphedema very differently since the 1930. Manual lymphatic drainage massage began in Europe, Introduced by Dr Vodder. This treatment approach is widespread throughout Europe and Australia. Dr Michael Foldi in Germany added compression bandaging techniques and exercises to the treatment protocol. These techniques were introduced into the United States mainly because of patient and caregiver dissatisfaction with results of the previous U.S. standard of treatment of lymphedema.

Post edited by: footprintsangel, at: 2008/05/28 04:09

Common Problems
Time management, Multi-tasking with family and friends
"Pacing myself,"I feel that lymphedema controls me. Never thought it would be me or it would get worse, Denial,Frustration.
Summary
Lymphedema is a condition that will be very different for each person. Treatment programs and home care will vary depending upon many factors. Everyone must take into account their own personal needs,family and work reponsibilites and medical history. The important idea is to work with your health providers in developing strategies that meets your physical and emotional needs as well as your lymphedema needs.

A Lymphedema-quiz

To help prevent and control chronic swelling, You should remember hand and arm precautions:

A. For six weeks after dischange.
B. For six months after discharge.
C. Until your doctor says you have developed new lymph pathways.
D. Until you fell fine.
E.Forever

To prevent infection in affected arm:

A. Cut your cuticles every week.
B. Wear gloves when working with hot or sharp objects.
C. Use an eletric shaver.
D. Stay out of bright sunlight.
E. A,b,and c



To prevent infection in affected arm and hand soon after surgery:

A. Elevate the arm 45 minutes.
B. Call your doctor or nurse immediately.
C. Elevate your hand or arm above the heart, Then open and close your hand 15 to 25 times.
D. A and c only.
E. A,b,and c.

Call your Doctor or nurse

A. If the affected hand,arm,or Axilla(underarm)feels
hot or swollen.
B. If you develop a temperature over 100.5*F
C. If you want to shave your underarm with an electric shaver.
D. A and b only.
E. A,B,and c.

Answers
1. E-Forever, You should remember these precautions for the rest of your life. Lymphedema can develop at any time.
2. E-Wear gloves when working with hot or sharp objects. Use an electric shaver. Use sunblock(SPF of 15 or higher) to prevent sunburn. Do not cut your cuticles; Use lotion and a cuticle stick instead.
3. D-Elevate your arm 45 minutes and open and close your hand 15 to 25 times. Repeat this two to three times.
4.D-Call your doctor or nurse if you think you may have an infection, Such as if the affected arm or axilla feels hot or is red or swollen,Or if you develop a fever that is not related to a cold or flu.

Sponsored by: American Cancer Society, National Institues of Health, National Lymphedema Network,
Susan G. Komen, Y-Me Breast Cancer Org.

Post edited by: footprintsangel, at: 2008/05/20 05:20

Specific precautions for patients with lymphedema of the leg:
1.Do not wear high-heeled shoes,tight shoes,or constricting buckles.
2.Do not walk outside barefoot, This will greatly reduce your risk of injury.
3.Remember to wear enough socks in cold weather to avoid frostbite.
4.In case of fungel infections of the toes,Visit the Dr. immediately.
5. Do not allow a vascular surgeon to inject or remove varicose veins in the affected leg.
6.Remember to maintain your desired weight.

Children Help for Lymphedema
www.childrenspecialized.org
www.makeachildsmile.org
www.albertalymphedema.org
www.lymphbaby.blogspot.com
www.monmonlath.com ?
www.healthgroup.yahoo.com/group/childrenwith lymphedema

Seven Levels of Healing and Helping Lymphedema

1. Education and Information: They are so empowering!

2. Connection with others: It is important to reach out to others

3. The body is a Garden: Good nutrition and exercise(what you can do)and alternative like herbs and water.

4. Emotional healing: Letting go of the pain and hurting and try to relax.

5. Lifes assesments: Each day is a gift, How do we share it with others and enjoy the day.

6. Nature of mind: Thoughts,Beliefs and our entire experience with lymphedema, Can influence life itself.

7.Nature of the Spirit: That of being whole and complete ,Even in the face of illness.


Answers.com Lymphedema
(Good lymphedema info)



Post edited by: footprintsangel, at: 2008/05/31 04:51

Post edited by: footprintsangel, at: 2008/06/02 05:18

Here are some tips to help you take care of you;
Try to take time for yourself.
Take good care of your body.
Be aware of how you are feeling.
Accept help from friends and family.
Try to keep your independence.
Listen to your heart.
Also listen when you hurt.

People who are at risk for lymphedema are those who have had:

Breast cancer, If you have had radition therapy,or underarm lymph nodes removed, or had radiation in the underarm area after the nodes were removed.

Melanoma of the arms or legs. If you had lymph nodes removed and/or had radiation.

Prostate cancer. If you had surgery or radiation therapy to the whole pelvis.

Cancer of the female or male reproductive organs.
If you had surgery to remove lymph nodes or had radiation therapy.

Other cancers that have spread to the lower abdominal area.
The pressure from the growing tumor can make it hard for your body to drain fluid.

National Cancer Institue

Post edited by: footprintsangel, at: 2008/05/31 19:19

The Medicare Rights Center, www.MedicareRights.org, telephone
1(800)333-4114
More information call(888)466-9050 www.socialsecurity.gov
The Patient Advocate Foundation, www.patientadvocate.org, telephone
1(800) 532-5274
Co-pay relief (866)512-3961 www.copays.org, www.EmergingMed.com
CancerCare (800) 813-4673 www.CancerCare.org

RX Assist.org, www.rxassist.org, www.choosetosave.org, www.lilycares.com 800-545-6962
AstraZeneca 800-292-6363 www.azandme.com
Bristol Myers 800-736-0003 www.bmspaf.org
Together Rx Access 800-444-4105 www.togetherrxaccess.com
Genentech's Single Point of Contact
800-249-4918 www.spoconline.com

Post edited by: footprintsangel, at: 2008/06/04 05:14

I forgot
Lymphology Association of North America(LANA)
Web site lists therapist,nurses,and physician who specailize in treating lymphedema www.clt-lana.org www.healthinsuranceinfo.net www.tbts.org www.patientravel.org/
www1.va.gov/health/ www.rmhc.com

Post edited by: footprintsangel, at: 2008/06/08 05:53

Other ways to help Lymphedema

Mind-body:These techniques are designed to use your bodys symptoms and fuctions.

Music therapy: Music has long time been thought to have healing power andmany patients find it soothing.

Aromatherapy: Essential oils are used in a skilled and controlled way to support physial and emotional health and well-being.

Nutrition and special diets: The food we eat provides the nutrients necessary for the body to repair and maintain its self.

Massage: helps to work out the swelling.( used alot)

Questions to ask>Dr
What is the goal?
What are the chances
After treatment?(am I done)
Will it help?(If not what?)
What if the treatment does not work?
Will I get PTherapy?
Will my insurance cover it?
How much will it cost me?
Is there another way?

Post edited by: footprintsangel, at: 2008/06/09 05:25