I developed secondary lymphedema after a Modified Radical Mastectomy of my left breast in spring 1999. At the time there were no treatment centers in my area. My oncologist treated me by telling me to wrap in Ace Bandages, which I now know is the worse treatment possible. I was working as a Department of the Army Civilian in Japan at the time of my diagnosis. I returned to the states for 4 1/2 months for surgery and chemo. After flying back to Japan in Mar 1999 with my left arm wrapped in ace bandages my arm and hand were beyond control. I was going to have to return to the states because the military medical system could not treat it. Luckily, a friend had a friend who was able to meet with me before work each day and put me through exercises to reduce the swelling.
I was able to get online through the Lymphedema Support Organization and located a doctor in Charlotte, North Carolina. I was scheduled to attend training in July so made an appointment. I was fitted for a garment and it was mailed to me in Japan. Still no treatment and only one garment. My Federal Employees Group Health Insurance did pay for the garment.
In 2000 I was lucky to get the opportunity to transfer to Germany and have access to Landstuhl Medical Center. There was still no treatment available through the military health system, but was able to get treatment locally through the a local German therapist. Retired in Oct 2002 and was able to receive treatment and get measured for new garments in Hickory, NC. My FEP still covered my cost for compression garments, but not for bandages for wrapping.
Recently I developed torso and right arm lymphedema so have to wear garments on both arms. MEDICARE will not cover them, thankfully my FEP covers them in full! Because of severe arthritis in my right shoulder I am unable to preform the Manual Lymph Drainage Massages and was prescribed the Flexi-Touch machine that MEDICARE does not cover, but FEP does. I am lucky to have the Federal Employees Group Health Insurance as my Secondary, but I am a North Carolina Seniors Health Insurance Information Program Counselor and have clients who have had their garments paid through group health insurance until they went on Medicare and they are no longer covered.
There is still a shortage of any medical professionals for treatment of Lymphedema. I have to tell my doctors what I need and they write the prescriptions. There is no doctor locally who treats it. I need a right shoulder replacement due to severe arthritis and local surgeon would not do it because of my lymphedema. Consulted a doctor in Charlotte who specializes in rehab and treats lymphedema patients for referral to a surgeon. Have an appointment in Charlotte for a consult the end of this month.