Lymphedema in legs

I'm new to this discussion. I was just diagnosed with lymphedema (both legs, the left worse than the right) and venous insufficiency in both legs too. I learned about this after I changed cardiologists and explained my frustration about having previous cardiologists accuse me of not taking Lasix as prescribed because of the swelling. My new cardiologist immediately ordered a vein mapping, which is where my lymphedema and venous insufficiency were discovered. When I found out that lymphedema swelling does not respond to Lasix, I felt vindicated (smile).

There were problems, however. The diagnosing NP explained everything well and told me what to expect when I went to a physical therapist at the clinic she was referring me to. She told me about the massaging and bandaging and said I may not be able to drive during those 2-3 weeks of reducing the swelling. So I spent several days finding ride services I could afford and would pick my up at my home and take me to the clinic at the appointed time. She told me that after that phase was finished and my legs were reduced in size, I would be measured for custom garments that would help maintain the size without the swelling.

My first appointment with the physical therapist was totally different than what I had been told to expect. When she took measurements of my most swollen leg, I thought it was for a baseline to measure my progress with the manual therapy. I was confused when she told me after she finished taking those measurements, she was going to send them to a company of her choice to get a quote for having garments made and then when she got that quote, she would submit it to my insurance company for payment. It was not a good appointment for this and other reasons related to our lack of communication with each other and my resulting frustration.

As a result of what seemed to be the need for some oversight of my therapy by one person, I chose to transfer my care for both lymphedema and venous insufficiency to one person and that person is a medical doctor/surgeon who not only can oversee my physical therapy needs that he thinks are appropriate, taking the pressure off me to try to make sure a therapist implements therapy as directed, and also enables me to explore other options that would not be possible for NPs or PTs to perform, such as some of the new medical procedures for certain stages of lymphedema (done at Mayo clinic and a few other hospitals). And since the doctor I'm now going to see is a vascular surgeon, he also can address my venous insufficiency concurrently with treatment of my lymphedema. My cardiologist (who had ordered the vein mapping) agreed with my plan. And so, I have been able to start a fresh treatment with a new doctor (an independent who is well known in my city) and stop seeing the PT who seemed to be a poor fit for me.

I'm sharing this because I have read several stories about people having trouble finding adequate treatment for their lymphedema. My short experience seems to be reflect that as a problem. I chose quick action to move away from the PT who made me feel uncomfortable. I hope my decision to engage a doctor instead turns out to be the right choice. I will keep you posted.