Not on a dare and not on a whim Francis Beveren (name changed to protect patient identity) jumped out of a plane 2 miles above earth and fell at a rate of 120 mph for 50 seconds. To skydive was on her bucket list. She did not know that this short jump would start her on a long journey of enduring a chronic condition called lymphedema. Many people who have had their lymph nodes removed after breast cancer surgery don’t realize that air travel can lead to a chronic condition of lymphedema.
This is a condition characterized by swelling in one or more extremities that result from impaired flow of the lymphatic system. The lymphatic system is a network of specialized vessels throughout the body whose purpose is to collect excess lymph fluid from the tissues. This fluid is then filtered by the lymph system where waste products are eliminated by infection-fighting cells called lymphocytes. The excess fluid in the lymph vessels is eventually returned to the bloodstream. When lymph vessels are blocked or unable to carry lymph fluid away from the tissues, the result is localized extremity swelling known as lymphedema.
According to Joe Zuther, physical therapist, author of the textbook “Lymphedema Management”, the blog "Lymphedema Blog" (www.lymphedemablog.com), and founder and educational director of the Academy of Lymphatic Studies, “Lymphedema is a very common and serious condition affecting at least three million Americans. The highest incidence of lymphedema in the United States is observed following breast cancer surgery, particularly among those patients who undergo radiation therapy following the removal of axillary lymph nodes. Many of these individuals will be affected by upper extremity lymphedema following these procedures. However, there are also a large number of individuals affected by lymphedema of the legs following surgery for prostate or gynecologic cancers. In other cases lymphedema may develop in the upper and lower extremities due to malformations of the lymphatic system,” says Zuther.
“All of our body tissues are dependent on lymphatics to drain fluid…. When that doesn’t happen, the fluid accumulates and the organs don’t function properly,” states Zuther, “it’s hard to believe that such a system can be ignored.” Understanding the importance of lymphedema and the lymphatic system is also paramount to Stanley Rockson, MD, director for Stanford University’s department of Lymphatics and Venous Disorders. “I think the easiest way to think of the lymphatic system is to imagine if you would build a house with bricks you would need mortar and although the mortar is not what the focus is on, it is really what holds the building together,” states Dr. Rockson during an online video representation at the Lymphatic Research Foundation.
As in many cases, people at risk for lymphedema are individuals who have NOT yet displayed signs and symptoms consistent with a diagnosis of lymphedema but have a known insufficiency of their lymphatic system. The National Lymphedema Network (NLN) reports that this includes people who have undergone removal of lymph nodes or radiation therapy, which increases the risk for developing lymphedema. At-risk individuals have altered lymphatic function that may impede the body’s ability to take up excess fluids that escape into the tissues. The NLN further notes that individuals at risk should pay close attention to changes in sensations of their extremities, such as heaviness, fullness of aching that may signal the onset of lymphedema from an airline flight.
According to NLN, the cabin pressure that is experienced during air flight is less than the atmospheric pressure on the ground. As the planes cabin pressure decreases during flight, changes in limb fluid occur. Then the external pressures exerted on the limb are changed. Diminished pressure in the airplane cabin will result in a decrease in the fluid moved in to the lymphatic system. The fluid will remain in the affected limb and an exacerbation of lymphedema may result.
Many health experts agree that people who have had lymph nodes removed should be prepared for flight by wearing a compression garment during air travel. Use of an appropriate compression sleeve may provide adequate external pressure to support re-absorption of fluid accumulation. Zuther notes that there is more to fitting a compression garment than checking numbers on a box on a pharmacy shelf and he recommends consulting with a lymphedema therapist in order to avoid an ill-fitting garment that can cause harm. It may be necessary to order a custom garment, which is more expensive but it can prevent painful lymphedema related problems. This compression garment should be left in place for 1 to 3 hours after deplaning to allow tissue pressures to equilibrate. “The goal is to obtain a full decrease in swelling and then a custom garment can be ordered for those at risk during travel,” he says.
“There is a real need in this area for qualified lymphedema therapists who have undergone many hours of additional training in order to provide exceptional care for those who have a compromised lymphedema system,” states Zuther. Those qualified therapists have an additional certification known as a “Complete Decongestive Therapy (CDT).” He knows that this is a title that will bring patients a thorough plan of care, which consists of manual lymph drainage, compression wrappings, as well as patient instructions on skin and nail care, exercises and education on self-massage.
Zuther reports that in order to treat lymphedema successfully, each component has to be applied. “Properly trained lymphedema therapists should provide all materials necessary for effective lymphedema therapy, such as compression bandages and garments. Unfortunately, at the current time there are no mandatory training standards for lymphedema therapists and some health care professionals claim to be lymphedema therapists, but have not actually attended and successfully graduated from a recognized training program. Patients searching for qualified therapists should make sure that the therapist attended a recognized lymphedema program consisting of at least 135 hours of training,” Zuther advises.
As in the case of Beveren, she was not treated with the mandated standards among the lymphatic therapy world. Three years after her initial start with massage therapy, her arm continued to swell. Her doctor then referred her to a clinic with trained therapists from the Academy of Lymphatic Studies.
Beveren states she was charged a massage fee for her initial round of therapy and believes that if she had originally gone to a place that offered fully qualified therapists she would not have wasted her time and money. “Under most medicare plans, manual lymph drainage is a reimbursable treatment,” states Zuther. “Any company that has a fully trained staff and CDT therapists certainly deserve praise for their forward thinking and vision in recognizing patient need,” he says.
Orchard Park Rehabilitation Center offers CDT therapists and free lymphedema screening assessments. The company is a comprehensive rehabilitative outpatient and inpatient services for short or long term care. They can be located at Orchard Park Health Care, 6005 S. Holly St., Centennial, CO 80121. Call 303-773-1000 to schedule your free screening.