I was born with lymphatic malformation in my thigh. This was not known until I had some trauma to my thigh at the age of four (1965) with a resulting swelling of unknown origin. Exploratory surgery was performed and a sizeable cystic hygroma and lymphangioma were removed. I spent approximately one month in the hospital with drains in my leg, a cast to keep me from touching the incision area, and a case of scarletina.
I grew up with a large scar on my thigh that proved to be embarassing for me as a teenaged girl in Southern California. I had skin changes that looked like warts all over the incision area and I endured a great deal of teasing at the beach, in the neighborhood and in physical education classes whenever I wore something that did not cover my legs. The swelling gradually increased over the years.
At the age of 20, I had another lymphangioma removed from the same site. This resulted in a ten day hospital stay in isolation due to a life threatening infection. The swelling after this was steady.
I was not diagnosed with lymphedema (both PRIMARY and SECONDARY) until I was 23 years old and my leg was already at stage 3. I was embarassed by my legs, had stopped wearing skirts and dresses and generally hid my body as best I could. To say that lymphedema interfered with my social life would be an understatement. Having one leg be so large and mis-shapened was a barrier to meeting new people and being a spontaneous individual. I was always worried about any activities that might possibly end up with my legs being exposed, so I opted out of invitations to the typical activities of a twenty something.
When I was finally diagnosed, the custom compression garment, that I paid for out of pocket because durable goods are not covered by insurance, was painful to wear since my leg was so swollen and hard that I could not tolerate wearing it. There was no returning the garment for refund because it had to be custom made. That was $250 that I will never get back nor benefit from.
It was not until I was 31 years old that I finally got treatment for my lymphedema. I was encouraged to have debulking surgery by the UCLA specialist I was seeing. The prospect of this surgery was so frightening that I begged to be referred to their own Lymphedema Clinic for MLD treatment first. The surgeon agreed to “give it a try” because he didn’t think it would be successful in reducing my leg. In that first MLD treatment of three and one half weeks, my calf went from being 8″ bigger around than the other and rock hard to only 1 and 1/2″ larger and to being soft and supple! With the use of constant compression, I have maintained most of that loss and my leg remains soft to this day at the age of 52.
It was difficult at first getting my insurance to cover MLD treatment but finally, on appeal, they agreed. None of my bandaging supplies to be used during treatment and none of the compression garments to be worn at all times for the rest of my life were/are covered. I must wear compression at all times. If I do not, I will be right back to the conundrum of deciding between the very invasive debulking surgery or continuing regular MLD treatments. These garments allow me a quality of life that I otherwise would not have.
Bandaging supplies, compression garments and other supplies necessary for Complete Decongestive Therapy are IMPERATIVE if a patient is to make progress and be compliant with therapy. It seems counterintuitive to patient care to only partially cover critically needed tools in the patient’s lifelong healthcare.
