living with lymphedema for 22 years - 62 years old

[rexygirl]

Hi everyone ! Im glad to have connected with this community. My lymphedema appeared 22 years ago, It might be primary- I had a couple of cellulitis episodes in my right leg in 1997, not sure if that was the cause or because of weakness in my lymphatics. I have struggled with being compliant - lymphedema keeps taking over more of my life. I've gone from knee high compression over the counter, to custom elvarex, to thigh highs, shorts, night garments and flexitouch pumping. I was lucky enough to just use compression during the week while I was working, but now i need to wear it on the weekends also. It feels like a prison sentence. I know i shouldn't complain, my condition is mild compared to what many others are suffering with- but I long to use compression less. I am to the point of considering surgery. That's my story.

[Lynora]

Hi rexygirl - where are you in the world? This site is based in London. There are people here from all over the world.

[rexygirl in reply to Lynora]

I am from Connecticut in the US

[lovesradio]

Have you looked into criteria, costs etc for surgery in US? Also there are some good sites/forums etc. In the States, I think one is Lymphoedema Education Research and Development.

[rexygirl in reply to lovesradio]

Hello ! I have started looking into the costs and the various surgeons in the US. Unfortunately, my insurance may pick up some of the costs of formal testing (which i have never had) after my high deductible and out of network costs! I'm guessing that I could be spending $50,000 out of pocket. I feel that I have to try to do something more than MLD twice a month and compression day and night. I"m afraid of what will happen to my leg in the next 20 years of my life.