I am receiving treatment for my lymphedema at a hospital here in Copenhagen. Presumably they should be some of the best in this field, yet I doubt I am getting the treatment best for me. The treatment I receive is limited to lymphedema-pump and bandaging. Bandaging however, I get in abundance, recently I was bandaged for six weeks, the bandages was changed every four or five days. Unfortunately it did not lead to a slimmer leg, almost the contrary, as I, when it was finally over, was left with a leg barely bendable, and a sore and very swollen knee filled with fluid. Reflecting on it I suppose it is logical that this would happen, a limb being tied up and not able to move will wither and languish. Now it's some weeks ago and my leg is somewhat better than when the bandages first came off. However, I now have to wear the toecap every day – before I almost never used it, and all in all I feel my leg is worse now than before. It is harder to keep the edema down, especially my ankle is very swollen, and I can no longer potter around at home for just five minutes without the stocking on (gotta take it off for washing sometimes...). I have to, once I have left it to soak, go lie on the sofa with the leg elevated, and then later quickly rinse it and then straight to bed.
The chiefnurse will not hear of anything other than lymphedema-pump and bandaging, there will be no manual lymphatic drainage.
After this last episode I feel I have to try something else. It is my body and I can not accept my leg getting worse than it could have been, because of hidebound, bustle and sloppiness.
What to do? I called a a renowned lymphedema therapist (Skodsborg) to have a chat, and she was absolutely mortified to hear that I had been bandaged for six weeks, and that I only got IPC pump, not hands-on massage. "A machine can never replace a pair of human hands." So true. This practice only does bandaging for one day at a time, and always with MLD first. How I would like to try this place for treatment... Unfortunately, this is a private clinic and so I would have to pay for this myself and since my income is currently very limited, this is not possible. I have now made an appointment with my GP, to see if there is anything she can do to get me in there instead the hospital, I know there are lymphedema patients receiving treatment there, paid for by public health insurance.
I should be SO grateful for ANY input on this matter, particularly about manual lymphatic drainage on legs (massage). Thank you heaps!