Lymphedema: Denial and Rebellion- It’s Only Human Nature
Posted on April 25, 2008 by sliers
The human mind is an amazing thing. Its ability to fool even itself to the detriment of the person is truly astounding. I see it on a daily basis when dealing with Lymphedema patients. The two I run into are denial and rebellion.
- Denial #1: “I’m the exception to the rule!” Unfortunately there is no cure for lymphedema and it is a progressive condition. Once Lymphedema has developed it does not go away. It must be managed on a daily basis. I can’t count how many times I have had patients report, “I tried going a day without using my compression garment and (surprise surprise) my arm/leg swelled.”
- Denial #2: “I haven’t had any problems for years, I’ll never develop Lymphedema!” As well, patients who have been instructed that they are at risk for developing Lymphedema at any point in time after having Lymph Nodes removed and/or undergoing radiation for cancer treatment, even 10 years or more later, come in and report they had been following the Lymphedema Prevention guidelines, but then figured they have not had any problems for years, so they won’t get it. Now, a month or two after, they are in my office with swelling.
- Rebellion: “I’m fed up with dealing with this!” I see this often as well. A person, who has been doing well with maintaining their Lymphedema on a home program, gets fed up with having to do the self manual lymph drainage, exercises, and using the compression garments, so they just stop. Months later they are ready to get back “on the wagon”, and come in to do the full intensive program all over again to get the Lymphedema back under control.
Don’t let human nature keep you from your success.
Sonja M. Maul PT, CLT-LANA
National Board Certified Lymphedema Therapist
Filed under: Lymphedema
I’m not in denial, but I believe my doctor is. We’ve been searching for the cause of swelling in my leg for 3+ months. He referred me to a cardiologist, who eliminated any heart-related causes via electro- and echo-cardiograms, stress test, and a Nuclear scan; I’ve seen a vascular specialist and had venous and arterial dopplers which indicate no vascular obstructions; an abdominal CT scan revealed nothing out of the ordinary; bloodwork has ruled out liver, kidney, and thyroid disorders as well as diabetes. In the meantime, one leg is swelled, red, itchy and tender and I’ve developed permanent creases around my ankle/heel. After doing my own research, I suggested lymphedema to my doctor. His response was that since I’ve never had any surgery on or near my lymph nodes and I’ve never had cancer, that the likelihood of my having lymphedema is practically nil.
What kind of specialist do I need to see to get this condition diagnosed/treated? As of right now, the only treatment I’m getting is 160 mg/day of Furosemide, and a potassium supplement to prevent depletion. I’m on a low-salt diet, and I elevate the affected leg whenever possible (which really does help).
Can you recommend a specific facility in (central) North Carolina that can diagnose/treat this condition? I’m at my wit’s end.
It is good that your physician is being thorough with ruling out other causes for your leg swelling, but unfortunately many are misinformed or just do not have a good understanding of Lymphedema. Just because you have not had surgery or radiation on or near your lymph nodes does not rule out Lymphedema.
Lymphedema is classified as Primary (having no known cause) or Secondary (due to surgery / trauma / radiation / tumor). Primary Lymphedema occurring before the age of 35 is known as Lymphedema Praecox (accounts for 83% of all cases). Primary Lymphedema occurring after the age of 35 is called Lymphedema Tardum (accounts for 17% of all cases). Lymphedema present at birth, or within the first 1-2 years, is called Congenital Lymphedema.
Primary Lymphedema may be due to having less than the normal expected number of lymph collectors in the affected region, or the lymph vessels are of an excessively dilated caliber, which renders them less functional due to valvular dysfunction.
I would say that more than half of the patients I treat have no history of surgery/radiation, and of those 99.8% have it in the legs.
Approximately 90% of all lymphedema cases are diagnosed on the basis of observations, measurements, and symptoms. Lymphoscintigraphy is an imaging technique used to diagnose lymphedema. The water-based contrast medium, which does not damage lymphatic tissues, makes it possible for a gamma camera to trace the flow of lymph. A computer generates images based on the data gathered by the gamma camera.
Do seek a referral to a Certified Lymphedema Therapist (CLT). And be aware the redness, itching, pain….can be a sign of infection and should not go untreated. Any physician can refer you (Family practitioner/Cardiologist/PCP…) . I do not personally know a person or facility in your area, but I did search the web and found many in NC (see below).
Good luck and best wishes, Sonja M. Maul PT, CLT-LANA
Wellness One
2418 Blue Ridge Road Suite 100
Raleigh NC, 27607
PH: (919) 782-5954
FAX: (919) 782-6444
http://www.wellnessone.com/lymphedema_therapy
Balanced Physical Therapy and Movement Studios
304 West Weaver Street
Carrboro, NC 27510 US
Tel: 1-919-942-0240
WWW: http://www.balancedpt.com