Swollen Arms, Swollen Legs - Living With Lymphedema
What's True and What's Not?
How do you know what to believe and what not to believe about lymphedema? How do you know if the treatment will help? If the practitioners are really skilled? If there is truly anything you can do to prevent it? If you are at-risk? In fact, it can be so frustrating, why not just give up?
For 12+ years I worked for the National Lymphedema Network (NLN)--based in Oakland, California--as the Assistant Director wearing many hats. All of these questions were posed to me again and again by distraught patients and parents of children with lymphedema. There are no easy answers, but there is progress and paths of experience and research to follow. There is information out there and my hope is that by sharing what I learned over the years, maybe I can help you, the reader.
First things first.
For the most current information (patients and health care professionals), I still recommend the NLN and the NLN website (www.lymphnet.org). The NLN is a non-profit organization that continues to be the central hub for all things lymphedema. Run by experienced and hard-working people dedicated to doing all they can to improve lives, I recommend it as a good place to start your education. Being a non-profit lymphedema organization working for change is never easy, to say the least. And it is made more difficult by politics in the field, in medicine in general, and in our country overall. But there are some amazing, dedicated professionals in the lymphedema field, be it in direct patient care, education, scientific research, training, or parent support. They are out there!
So if you are a patient or a parent struggling to find help--don't give up!
What about those questions? How do you know what to believe and what not to believe about lymphedema?
That depends on who you ask. Today, if you have a physician who "doesn't believe" in lymphedema, you have a physician who lacks education in this area, pure and simple. More scientific research is being done today than ever before. That's not to say it's anywhere near enough, but the field is growing in the United States at last. Entire hospitals for lymphedema treatment have existed in Europe for decades, but finally, American medicine is giving it a glance.
There are two main problems: the first is that lymphedema is currently incurable (there is no pill, no device or surgery that will fix it), and the second, that treatment for lymphedema is energy and time-intensive (and therefore not considered a lucrative field). Very few medical professionals are willing to spend the time and energy required to treat an incurable condition.
However, treatment today has a huge impact on the health and quality of life for people living with lymphedema.
- decrease the swelling, often to a much more manageable proportion;
- prevent increased swelling;
- maintain the affected limbs/areas and improve quality of life;
- heal wounds caused by stagnant, untreated lymphedema;
- prevent or decrease chronic infections (cellulitis, lymphangitis) which, when left untreated, can be extremely dangerous and must be treated immediately with antibiotics (specific antibiotics have been found to be most affective for this type of infection - contact the NLN or your local lymphedema specialist for more information).
If you are a patient--or the parent of a child with lymphedema--you should consult a professional who is familiar with the current protocols for lymphedema. The Medical Advisory Board of the NLN continually updates and drafts "Position Papers" regarding treatment and other aspects of lymphedema (see: http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm). If your current physician has no knowledge of lymphedema or is unwilling to refer you for treatment, printing out position papers for him or her may be helpful. The NLN also publishes a Resource Guide listing certified lymphedema therapists (www.lymphnet.org/resourceGuide/resourceGuide.htm).
So what is lymphedema?
There are two forms: secondary (secondary to surgery when lymph nodes are removed, or to other incidents/accidents where the lymphatics are harmed), and primary (congenital, or onsets for no apparent reason, often at puberty).
Lymphedema is NOT caused by water retention. Taking diuretics/water pills will not help the swelling and, in the long run, actually can worsen the swelling. There is a terrific overview of lymphedema, written by a medical professional, here: http://www.lymphnet.org/lymphedemaFAQs/overview.htm.
Cancer & Lymphedema
In today's practice of medicine, unfortunately we have few options in the treatment of various forms of cancer. Most require that lymph nodes be removed in order to assess whether the cancer is localized or if it has begun to spread through the lymphatic system. This information can mean life or death! Removing as few lymph nodes as possible is always the goal, but even then, some of our lymphatic systems will be able to redirect the flow of lymph fluid, some will not. Our lymphatic channels--similar to pipes in plumbing--are unique to each of us. No two lymphatic systems are laid out exactly the same.
So the question is, since removing even one lymph node (for example, the sentinel node) can cause lymphedema in some patients (which can onset immediately or 5, 10, even 20 years or more after the surgery), why do we continue to remove lymph nodes?
The answer is simple: life or death. No nodes removed and sure, there's no risk of lymphedema. But no nodes removed also means the spread of cancer may be missed--and we all know what that means.
Today, lymph node removal is part of life-saving cancer treatment. Hopefully in the future there will be new non-invasive diagnostic approaches. But for now, your survival and recovery from cancer are #1.
Yes, it's true that over my 12+ years of helping people with lymphedema, I did hear a great deal of frustration and pain about having to live with lymphedema after surviving the cancer. Some even felt it was worse than the cancer, itself; a daily reminder and a huge lifelong self-care burden.
But I never did hear one patient say they were glad they chose death over lymphedema. Since those are currently our only choices, we move on by learning as much as we can about lymphedema and how best to care for the condition.
Practitioners - How Do You Find Them?
Currently, there are no government-recognized national standards for treatment of lymphedema or accreditation of lymphedema training courses. However, the NLN, as well as other organizations such as the Lymphology Association of North America (http://www.clt-lana.org/), are working to change this. Here is a good overview regarding practitioners: http://www.lymphnet.org/resourceGuide/resourceGuide.htm.
In the field of lymphedema, as in so many other fields, be they medical or otherwise, politics and in-fighting are rampant. But progress prevails despite this. Since medicine is made up of people--i.e. a wide variety of personalities, egos, passions and concerns--and each individual brings with them their own personal baggage (like all of us), there is bound to be conflict. But in the hearts of most people involved in this work, there is the intention and hope for a better future for lymphedema patients, and for preventing, if not curing, lymphedema. My own hope is that the field will continue to grow and mature, and surpass all of our expectations for success.
Surfers Be Wary
Until that time, it's up to every one of us to do our homework. The internet is both a fabulous resource and a black hole of deception, so you have to use your instincts and intellect as you go. The three resources listed at the bottom of this article are three that I know are in general agreement and are run by leading professionals in the field, with their hearts and minds in the right place.
Still, when you go for treatment, be sure and ask about certifications (where did they go to school and how are they keeping up with current practices?), licenses and references (other patients they gave treated successfully). Check with organizations like the NLN to get feedback about them, and network with other patients. Even other patients, of course, will have their biases. But in the long run, you'll find a strong thread through all of your research that will lead you to the right place and hopefully the right people to help you.
A few final thoughts:
- Lymphedema is an increasingly common condition that can be caused by a number of things, including the removal of lymph nodes or trauma, such as a car accident.
- Lymphedema can and should be treated by a knowledgeable, experienced and well-trained professional (not someone who simply attended a weekend or one-day course, but a complete two-week or longer intensive training program).
- The majority of people who seek treatment do see improvement and get some relief (a great deal in many cases).
- If you've had lymph nodes removed (even just the sentinal node) during the course of cancer surgery, the risk of developing lymphedema is real, though you may never develop it in your lifetime. EDUCATING YOURSELF NOW is key and NOT something to fear.
- There ARE wonderful, caring doctors, nurses, PTs, OTs and lymphedema therapists who know about lymphedema and can provide quality care for you and your family, be it guidance in risk-reduction before developing lymphedema, or treatment and maintenance after.
- The energy it takes to find someone who can help you is worth expending--this is the quality of your life we're talking about and your longterm health. HELP IS OUT THERE.
- YOU are the key to your successful care and longterm maintenance. Once you receive treatment, you'll discover that there is a great deal you can do for yourself to maintain your affected limb/s, and an active healthy body.
- Other patients can be a great resource--connect, if you can, either online or through a local support group. Patients, like professionals, have their biases and baggage, so as always, use your instincts and intellect to guide you. There are some wonderful patients out there who continue to heal themselves by helping others. Seek their support if you can.
- Yes, treatment is still not a cure. How I wish I had a cure to share with you! A cure for the thousands of patients I spoke with and assisted over the years--some of whom have become dear friends--and for everyone today and in the future who may develop it. I'm grateful that there are dedicated and ethical scientists and healthcare professionals out there who continue to work so hard to improve the lives of millions of Americans living with lymphedema. Stay positive, they are out there.
- Three good resources: NLN at www.lymphnet.org; LANA at www.clt-lana.org; International Society of Lymphology/ISL http://www.u.arizona.edu/~witte/ISL.htm
Til next time, take good care.