[Debbie L.]

Sarah, I agree with everyone else. This is not a small thing and you're right to be worried. I'm sorry you are not getting the right response from your doctor.

I agree with Denise, Mel3 and Ellie who advised pushing harder to get this evaluated and treated by a lymphedema specialist, asap. And with Lani who points out the sad lack of evidenced-based advice that is available.

One thing about the compression sleeve -- it's to wear only during the day, when you are moving the arm. It is supposed to help the "muscle pump" action which is what moves lymph fluid thru our body (there is no pump for lymph circulation like the heart does for blood). When worn at night when the arm is likely to be still and/or squished -- it can do the opposite of its purpose, actually restricting flow rather than encouraging it. People do wear compression bandaging and special sleeves at night, but those are not elastic like the regular compression sleeve.

Lymphedema treatment should be 4-pronged. Basic skin care (clean, moisturized, not chafed), lymphatic massage/MLD (manual lymph drainage), exercise, and compression.

The "massage" is not really massage as most would think of it -- it's much more gentle and must be done in certain directions and in certain sequences. You can be shown how to do it, but it's not (imho) really something you can read about and then do. It needs a specialist to do it for you at first, and then to teach you (and/or a loved one) how to do it yourself.

The compression, in the beginning and for severe cases for the duration, may be special wrapping, at least at night -- rather than just the sleeves. (and, as Lani said, evidence is sparse for almost all lymphedema treatment but it's especially lacking in the area of compression sleeves -- not that there is evidence they are bad, but neither is there evidence that they help, at least not last time I looked).

The exercises are also specific to lymphedema. There are quite a few different ones to choose from and most people find the ones that work best for them thru trial and error. Every arm with lymphedema is not the same, and it's to the arm's owner to learn the specifics of her arm -- what triggers worsen the swelling, and what works best to control it when it flares.

I do hope you're able to see a specialist about this. I don't know what's available to you. Germany has historically been the leader in lymphedema treatment and research, but I don't know about the rest of Europe.

Please keep us posted. Good luck!
Debbie Laxague