Tuesday, March 15, 2011

Call to Fellow Lymphies: Information on Treatment Globally

Why is the United States so behind in Lymphedema treatment and outreach?

From what I have found on the Internet, the UK and other countries are more advanced in treatment and awareness of Lymphedema. Could all of my fellow Lymphies send me information on your experiences with finding treatment (proper treatment), any obstacles to finding such treatment, costs of treatment, level of education of the individual who treated you (M.D., Nurse Practitioner, Nurse, Occupational Therapist, Physical Therapist, etc.).

What did your treatment entail? How did you feel about the treatment?
I am thinking this could be a part of something larger than my blog. Perhaps a publication? A call to step up treatment practices…

Let’s educate ourselves on our experiences and push for more treatment options, better treatment facilities, more specialized training for treatment programs, etc.

Please share this with any other Lymphedema networking you are a part of! Thanks in advance.

Also, great resource for those in the UK:



Cassandre Miller said...

I first got involved with various Lymphedema treatment modalities in 1981. I have seen it come a long way, since then. I guess that is something. I remember when I would walk into a Dr.'s office and hear, "Lymphedema??? I haven't seen that in 20 years!!! ugh..We have made considerable strides. Even with Insurance reimbursement in the US.

Lindsay Nichols said...

Hi Cassandre, thanks for your feedback here. What sort of treatment did you first receive in the 80's? Do you still receive treatment from time to time or do you only self manage?

Anonymous said...

hey there,

Try living in NZ! there is no treatment...I only got given compression stockings for venous problems. Sigh
So, I went and found Professor Corradino Campisi in Genoa, Italy. I had microsurgery to create new routes for the fluid to get out of my leg. Looks promising so far...my leg is almost the same size as the other one and much, much softer (google him)
I'd also recommend a night garment like reid sleeve and a pump like lymphapress
hope this helps,

Elaine said...

I'm in Japan and what I have is fairly standard CDT/MLD, wrapping and so on. Since I'm primary none of it is automatically covered by the otherwise very good Japanese health insurance system - secondary is covered. If I apply myself I get 50-70 percent reimbursement, 70 percent is standard for all healthcare here. Everything is ordered from Germany and quite expensive - no reflection of the strong yen, which should make it cheaper! ha
Attitudes also may be quite different here - there's a definite attitude of "just shut up and get on with it" which isn't all that helpful - even if it's true. And they tell you some different things: that hot baths are okay if you don't stay in them that long (Japanese could not live without their baths) etc. Good to find this blog!