liz (di-va)
Well-Known Member
I think there should be a thread about this! So I'm starting one. I know there are others besides me around here who might wish to talk about it or at least read about it.
By strange coincidence (I've been trying to explain what it is to people recently), there was an article about it in the New York Times last week (pasted below). It mostly talks about lymphedema in the context of post-cancer treatment, but does a good general job of describing the way treatment works and its unusual demands.
[My story: I have lymphedema primarily in my lower left calf, the result in part--chicken? egg?--of a blood clot this past fall. I have had cellulitis. I'm currently in my c. 7th week of treatment and it seems to be going quite well overall. Although I am NOT to the nerdy compression stocking stage yet! That joy awaits. I will probably be there in 2-4 weeks.]
The thing that amazes me, that the article touches on, is how little the lymph system is understood. I had this condition for three years before anybody thought to diagnose me with it, and my calf was prodded a lot during the Clot Crisis. I am very very lucky that I live closeby to a good PT/lymphedema specialist and can get the treatment I need; there just aren't a lot of people doing it.
Anyhow, I would hope people might use this thread if necessary. I know I will be having more questions as I proceed with treatment!
Plus, I plan to post naughty photos of me in bandages
. Stigmas suck!
- - - - - - - - - - - - - - - -
(This will probably be off the NYT site shortly)
Article
A Painful Lymph Illness Often Follows Cancer
By RONI CARYN RABIN
Published: June 5, 2007
Pat Malone had her lymph nodes removed as part of her breast cancer treatment, and for almost a decade she managed to keep her lymphedema, a chronic condition that causes swelling from an accumulation of fluid, under control. Then she decided to paint her kitchen.
Within days, the pain in her right shoulder was nearly unbearable, she said. She had chills and a fever of 105. Her arm was bright red and wicked looking.
Thank goodness I knew what signs to look for, said Ms. Malone, 53, who lives in Northport, N.Y., on Long Island. I went to the emergency room and I told them, Youve got to put me on intravenous antibiotics right away. I was in the hospital for seven days.
Many cancer survivors develop lymphedema, which can lead to serious infections like the one that landed Ms. Malone in the hospital over a year ago. Though it can occur without cancer, patients whose lymph nodes were removed during cancer treatment are particularly susceptible. Some studies suggest that 30 to 40 percent of breast cancer survivors develop lymphedema, sometimes years after surgery.
There is no cure for lymphedema. But while patients are still occasionally told that they must learn to live with it, experts say effective treatments are not only available but critically important, and the sooner patients get help, the better. An infection from a flare-up can be life-threatening, because the lymphatic system plays a major role in the immune system.
Every cell in your body is like a little manufacturing plant that makes debris, and the lymphatic system drains the trash and carries it away, said Dr. Alan Kimmel, medical director of the Lymphedema Center at the Greater Baltimore Medical Center.
The system ferries the debris to the lymph nodes, which Dr. Kimmel likened to Dumpsters. When you take that away, the fluid has no place to go, and it builds up. You can understand why infections occur.
The first step for a patient is getting the right diagnosis. That isnt always easy, because few physicians specialize in lymphedema and the swelling may be mistaken for other conditions, including heart, thyroid and kidney problems and deep vein thrombosis.
The lymphatic system is not taught in medical school, said Saskia Thiadens, executive director of the National Lymphedema Network, a nonprofit organization that is pressing to include more education about the system in physician training.
Even after diagnosis, it may be hard to get access to good treatment. The preferred therapy for lymphedema, called complete decongestive therapy, involves a time- and labor-intensive gentle massage technique to stimulate new pathways for the lymphatic fluid. Many insurance policies cover the therapy, which can cost thousands of dollars.
It is performed by certified lymphedema therapists, who have completed at least 135 hours of training. The National Lymphedema Networks Web site, www.lymphnet.org, has a directory of certified therapists that can be perused by state or region.
But some places are better served than others. Unless youre in a coastal urban area, its hard to find certified therapists, said Dr. Paula Stewart, the medical director of HealthSouths Lakeshore Rehabilitation Hospital in Birmingham, Ala. In small-town U.S.A., there is a big shortage.
And since a course of treatment lasts several weeks, patients may find themselves on waiting lists or even have to relocate temporarily. In 1994, Jeanne B. Tassis of Prospect, Conn., finally got a diagnosis of lymphedema after almost eight years of symptoms. Mrs. Tassis, who has since founded the Circle of Hope Lymphedema Foundation, eventually moved into a hotel in Woodbury, N.Y., for a few weeks while undergoing treatment at the Lymphedema Therapy Center there.
Treatment involves three to four hours of therapy a day. Massage is just one part of it; afterward, the therapist wraps the affected limb in compression bandages, mummy-style. Ideally, the therapist will prescribe exercises and teach the patient to do self-care and manual drainage at home.
Because the treatment is so rigorous, some centers ask patients to sign an agreement in which they promise to adhere to it.
When treatment is completed, the patient is fitted for compression garments that are custom-made for the affected limb. The garments, which can cost $100 or more (seldom covered by insurance), must be worn during all waking hours and are replaced every four to six months as they become loose.
And keeping lymphedema under control is a lifelong struggle. To avoid injuries that lead to flare-ups, experts recommend using razors with care, wearing rubber gloves to wash dishes, applying insect repellent (bites can become infected) and even not having the cuticles cut during a manicure.
Exercise should be done in moderation, and patients should wear loose-fitting jewelry and clothing and avoid extremes of cold or heat. If the legs are affected, people should not cross them, and compression garments are recommended for all patients during airplane travel. The National Lymphedema Network sells bracelets that say Lymphedema Alert: No blood pressure and no needles into this arm.
Anyone with a history of the disorder should be on the alert for warning signs like a slight swelling or redness, a feeling that their rings or watches are getting tight or a heavy feeling in a limb.
Pat Malone changed her ways after her scare last year; she is more careful about putting pressure on her arm, and she wears compression garments religiously.
I dont baby the arm but I had overdone it painting the kitchen, she said. Ive worn compression garments 24 hours a day ever since. You have to do it.
Its a small price to pay to keep your arm mobile.
By strange coincidence (I've been trying to explain what it is to people recently), there was an article about it in the New York Times last week (pasted below). It mostly talks about lymphedema in the context of post-cancer treatment, but does a good general job of describing the way treatment works and its unusual demands.
[My story: I have lymphedema primarily in my lower left calf, the result in part--chicken? egg?--of a blood clot this past fall. I have had cellulitis. I'm currently in my c. 7th week of treatment and it seems to be going quite well overall. Although I am NOT to the nerdy compression stocking stage yet! That joy awaits. I will probably be there in 2-4 weeks.]
The thing that amazes me, that the article touches on, is how little the lymph system is understood. I had this condition for three years before anybody thought to diagnose me with it, and my calf was prodded a lot during the Clot Crisis. I am very very lucky that I live closeby to a good PT/lymphedema specialist and can get the treatment I need; there just aren't a lot of people doing it.
Anyhow, I would hope people might use this thread if necessary. I know I will be having more questions as I proceed with treatment!
Plus, I plan to post naughty photos of me in bandages
. Stigmas suck!- - - - - - - - - - - - - - - -
(This will probably be off the NYT site shortly)
Article
A Painful Lymph Illness Often Follows Cancer
By RONI CARYN RABIN
Published: June 5, 2007
Pat Malone had her lymph nodes removed as part of her breast cancer treatment, and for almost a decade she managed to keep her lymphedema, a chronic condition that causes swelling from an accumulation of fluid, under control. Then she decided to paint her kitchen.
Within days, the pain in her right shoulder was nearly unbearable, she said. She had chills and a fever of 105. Her arm was bright red and wicked looking.
Thank goodness I knew what signs to look for, said Ms. Malone, 53, who lives in Northport, N.Y., on Long Island. I went to the emergency room and I told them, Youve got to put me on intravenous antibiotics right away. I was in the hospital for seven days.
Many cancer survivors develop lymphedema, which can lead to serious infections like the one that landed Ms. Malone in the hospital over a year ago. Though it can occur without cancer, patients whose lymph nodes were removed during cancer treatment are particularly susceptible. Some studies suggest that 30 to 40 percent of breast cancer survivors develop lymphedema, sometimes years after surgery.
There is no cure for lymphedema. But while patients are still occasionally told that they must learn to live with it, experts say effective treatments are not only available but critically important, and the sooner patients get help, the better. An infection from a flare-up can be life-threatening, because the lymphatic system plays a major role in the immune system.
Every cell in your body is like a little manufacturing plant that makes debris, and the lymphatic system drains the trash and carries it away, said Dr. Alan Kimmel, medical director of the Lymphedema Center at the Greater Baltimore Medical Center.
The system ferries the debris to the lymph nodes, which Dr. Kimmel likened to Dumpsters. When you take that away, the fluid has no place to go, and it builds up. You can understand why infections occur.
The first step for a patient is getting the right diagnosis. That isnt always easy, because few physicians specialize in lymphedema and the swelling may be mistaken for other conditions, including heart, thyroid and kidney problems and deep vein thrombosis.
The lymphatic system is not taught in medical school, said Saskia Thiadens, executive director of the National Lymphedema Network, a nonprofit organization that is pressing to include more education about the system in physician training.
Even after diagnosis, it may be hard to get access to good treatment. The preferred therapy for lymphedema, called complete decongestive therapy, involves a time- and labor-intensive gentle massage technique to stimulate new pathways for the lymphatic fluid. Many insurance policies cover the therapy, which can cost thousands of dollars.
It is performed by certified lymphedema therapists, who have completed at least 135 hours of training. The National Lymphedema Networks Web site, www.lymphnet.org, has a directory of certified therapists that can be perused by state or region.
But some places are better served than others. Unless youre in a coastal urban area, its hard to find certified therapists, said Dr. Paula Stewart, the medical director of HealthSouths Lakeshore Rehabilitation Hospital in Birmingham, Ala. In small-town U.S.A., there is a big shortage.
And since a course of treatment lasts several weeks, patients may find themselves on waiting lists or even have to relocate temporarily. In 1994, Jeanne B. Tassis of Prospect, Conn., finally got a diagnosis of lymphedema after almost eight years of symptoms. Mrs. Tassis, who has since founded the Circle of Hope Lymphedema Foundation, eventually moved into a hotel in Woodbury, N.Y., for a few weeks while undergoing treatment at the Lymphedema Therapy Center there.
Treatment involves three to four hours of therapy a day. Massage is just one part of it; afterward, the therapist wraps the affected limb in compression bandages, mummy-style. Ideally, the therapist will prescribe exercises and teach the patient to do self-care and manual drainage at home.
Because the treatment is so rigorous, some centers ask patients to sign an agreement in which they promise to adhere to it.
When treatment is completed, the patient is fitted for compression garments that are custom-made for the affected limb. The garments, which can cost $100 or more (seldom covered by insurance), must be worn during all waking hours and are replaced every four to six months as they become loose.
And keeping lymphedema under control is a lifelong struggle. To avoid injuries that lead to flare-ups, experts recommend using razors with care, wearing rubber gloves to wash dishes, applying insect repellent (bites can become infected) and even not having the cuticles cut during a manicure.
Exercise should be done in moderation, and patients should wear loose-fitting jewelry and clothing and avoid extremes of cold or heat. If the legs are affected, people should not cross them, and compression garments are recommended for all patients during airplane travel. The National Lymphedema Network sells bracelets that say Lymphedema Alert: No blood pressure and no needles into this arm.
Anyone with a history of the disorder should be on the alert for warning signs like a slight swelling or redness, a feeling that their rings or watches are getting tight or a heavy feeling in a limb.
Pat Malone changed her ways after her scare last year; she is more careful about putting pressure on her arm, and she wears compression garments religiously.
I dont baby the arm but I had overdone it painting the kitchen, she said. Ive worn compression garments 24 hours a day ever since. You have to do it.
Its a small price to pay to keep your arm mobile.
