My goodness. Been reading about all the nice folks on here for a couple years now. I read you have issues with insurance etc...but olet me tell you...at least most off you are getting some sort of care. I have been fighting to get treatment for 5 years now. Took over 20 years to get a diagnosis as in America lymphedema isnt even thought about unless one has had breast cancer! I have not. My husband is from Kent England and for years his family have been saying I need to come there. Now it looks to be too late. Even Ireland is responding to the needs of lymphedema! Golly I wish I could move.
Hard to find care in the U.S.: My goodness. Been reading... - LSN
Are you in touch with the team at NLN? National Lymphedema Network? lymphnet.org/ - there are support groups throughout the US.
it costs $50.00 to join NLN. Not in my budget at this time. I can read the articles though and have done so. I live in a small town and the closest doctors are 50 miles away. Up until 6 months ago there were no lymphedema theripists at all. I have been seeing a girl who just trained. So far she has been unable to do mld or wrap me due to my odd shape.
Yep, that's true in the Orlando area too. The really good measured compression stockings help a lot, but gosh, are they expensive!! Every doc I've been too (tooo many) tells me to lose weight and I'll be good as new. What a bunch of dummies. Wonder why so few realize what is really going on with Lymphedema - especially without cancer.
I am also from the US. I too have had a year of my doctors not knowing but keep saying it's adema, but sent me to have "lympphedema massage therapy". I've seen two vascular surgeons and had some vascular laser surgery, which helped a very little. I found a surgeon who specializes in this condition. He is located in New York City, but can't see him until December!!!! Here a few websites that I found helpful.
There is walk scheduled to raise funds in Plano TX....check out this page, along with the rest of the website. You might be able to find doctors in your are.
Trust me you will find one. I just found my doc in NYC just yesterday and I've been looking for over a year. Down side, I can't get to see him until December!!!
Vicky~~~I know it is awful. I have had LE
For at least 9 years. Nearly died being treated for something else and still have no treatment. I have had some. I was in the hospital and the CLT saw me 3 a week for 3 weeks.......lost 60 pounds of lymph fluid. But I could not stay in as LE
Is not an admitting diagnosis. I am bed bound and the CLT S don't do home care ( unless you pay cash $125-150 per
Visit) So here I am, learning self massage and all I can do to help myself. It is more than difficult. Hope you can find help where you live.