Hard to find care in the U.S.: My goodness. Been reading... - LSN

LSN
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Hard to find care in the U.S.

vickyg45
vickyg45

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.

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Are you in touch with the team at NLN? National Lymphedema Network? lymphnet.org/ - there are support groups throughout the US.

vickyg45
vickyg45
in reply to Lynora

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.

Where are you in USA? True lymphedema sufferers who are not breast cancer survivors are underserved. Cleveland Clinic in Ohio, Santa Monica CA has Doctor and treatment, Dr. Joseph L. Feldman Northshore Clinic for lymphedema and more. You must do some research on your own.

There is just one place that does wrapping etc but insurance does not pay for measured stockings and most Dr's just give you water pills here in Miami..

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.

lymphaticnetwork.org/

marksmithmd.com/

lymph.org/

vickyg45
vickyg45
in reply to metalchk

WOW New York...Im not sure I can aford to go that far...lol youd think the big state of Texas would have more to offer!

vickyg45
vickyg45
in reply to metalchk

thanks for the links...

What part of the U.S. are you from? We have some good lymphedema clinics here in OH.

vickyg45
vickyg45
in reply to Pjtrant

Im in Texas...east texas....smalllll lil town... love the farm but man no health help for miles and miles...

Hi Vicky,

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!!!

lymphatic.donorpages.com/LY...

vickyg45
vickyg45
in reply to metalchk

thanks. looking now

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.

wow...60 pounds...so frustrating knowing it CAN be done if you only had the help needed!

Where do you leave???

I meant where do you live? I am in Houston. Does your insurance cover anything? If you go to a therapist that works UNDER the care of a doctor, the doctor will write a prescription. Do ou have a Reid sleeve? Do you have a pump? Goole and you can find

anyone......!!Let me know if I can help

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