New Sleeve Wearer: Have Questions

Carol--My sleeve goes up to the shoulder.  I do have loose skin at the top (back) and have to make sure I get over the last "bulge" for it to stay in place as the top is measured to go over it.  I use "it stays" there to keep it from sliding down.  I used kineseo tape for truncal and a compression bra.  I have ordered a UA shirt as the asset ones from Target did not come high enough.  I have a Jobst sleeve that has the softer elbow part front and back.  I have to make sure the elbow is in the right place for the correct fit.  I have the wider silicon top and if I am not careful it rubs my trunk and gives me a rash.  I have to be careful with what I wear.  I have a great therapist who measures me for fittings and seems to get it right each time.  I know some others will weigh in on what they do.  Be careful having velcro around the sleeve material!  I don't have tingling either when my sleeve is on.  Becky

It seems to keep mine in place.  I do cardio/aerobic daily.  The hardest is getting the sleeve past the "it stays" I have put on before my sleeve.  It is sticky.  I am not sure how aggressive you get with your arm as I am careful with mine but I do the arms on the elliptical, swing them when I walk, do the LeBed exercises which  has a lot of stretching, and lift light weights every other day.  Becky

Carol, I'll second Snorfia's recommendation of the WearEase Slimmer cami. Comes up high enough in the axilla and it's long enough to stay in place. Since I didn't do recon, I wear mine inside out so the prosthesis pockets are easier to access. It's covered by insurance as either LE garment or mastectomy bra. My insurance entitles me to two bras a year and four chest compression garments, so I get six WearEase camis a year.
Binney

Carol, interesting questions! Gradient compression on the arm works by decreasing the compression from distal (think "distant," in this case the hand, which is most distant from the axilla) to proximal (as in "proximity," meaning closest to the axilla). Arms are pretty standard, in that our wrists and lower arms are narrower than our upper arms, which is why there can be standard sizes in gradient compression sleeves and they're still gradient in their compression (though they're not suitable for everyone, depending on the shape of their arm).

With truncal swelling any attempt at something like that would involve first of all determining which direction you wanted the fluid to go. If your surgeries were unilateral, you'd want it to go from the affected axilla to the unaffected one, where presumably there are still functional nodes -- and you can see how gradient pressure going in that direction would be impossible. Those of us who are bilateral want the fluid to go south, to the groin nodes. And those of us with long mastectomy scars also have to consider moving the fluid above our scars upward to the neck area nodes, since the fluid doesn't cross scars well, further complicating the matter.

Besides that, our individual shape would also have to be considered, since some of us have breasts and some don't and all of us have our weight distributed in different ways.

Another factor that makes this complicated is "bridging," which is the term they use when a raised area of our anatomy (the breasts, say) lift the fabric away from an adjacent area of the skin (like between the breasts), so that there's a lot of compression on the breasts (creating a "loaf of bread" effect instead of a cleavage), and no compression at all in the cleavage. 

Night garments are another matter, because they use directional stitching to direct flow. So if you get the stitching going in the right (for you) direction that's quite workable.

Whew! Did any of that help?!

If the issue with your UA shirt is chafing, a bit of baking powder patted on the area before you get dressed might help. Or a Swell Spot. But if it's truly too tight it would cause real problems with the LE.  Swim suits, same thing. You don't want them too tight under the arm or in the shoulder straps.

It's impossible to guess how much of what you're feeling is due to the surgery, but for me there's pain WHEN I also have LE issues, and no pain when I don't. MLD and Lebed exercises reduce the pain, so that helps to distinguish the cause.

I wonder if my insurance would cover a Swell-O-Meter...?

Hugs,
Binney

I haven't been at this very long- just had UMX no recon in June.  My gut feel, and fervent hope, is that things will settle down as the cancer surgery fades into the mists of distant memory physically as well as mentally. Already I have a lot less pain, strange numbness, tingling, shooting, and other bizarre sensations than I did over the summer. And I feel a lot less "fragile" - like I can overdo it a little without gruesome consequences. I also realize that I am writing this on a non-flare day, because all these things really do come and go.  I hope my overall trend is that my symptoms are fading.  I'll know more in a year or two...