Tissue expanders and LE ?

olearca

I had BMX in June with TEs placed. From the very beginning, left TE has been sitting in my left armpit. I got some initial relief with early fills but now that I am overfilled and waiting exchange, the discomfort is back. I've got stage 1 LE of left arm and now some breast swelling too. My PT has helped with cording and breaking up painful scar tissue at the SNB site. My hand swelled today for the first time and I will need to add gauntlet to my sleeve.



My question is do you think it is unreasonable to hope for some improvement once the TEs are removed? Has anyone else gotten better management of their LE once the TEs are removed? I know this is life long management, but is it wishful thinking to hope that removing these god awful plastic shells will give me some relief? My exchange is 10/27.



Thanks in advance. Catherine

Binney4

Catherine, how discouraging! I'm so sorry. I'm sure some of the women who have gone through this will be along soon. I didn't do recon so have no experience with this, but do know that the outcomes regarding lymphedema are quite individual, and rather unpredictable. But many do better once it's all settled down.

I did want to add, though, that if you're having hand swelling you want a glove, NOT a gauntlet, as a gauntlet may push the swelling into your fingers, where it's much harder to deal with. 

Is your PT a fully-trained LE therapist? If not, you need one on your team!

So glad the exchange is only a few weeks away now. Hang in there! I'll be looking forward with you to real improvement and ease of control once all this is behind you!

Hugs,
Binney

olearca

Binney, I'm really navigating this in my own and am determined this week to get a referral to a more comprehensive LE team. My PT is certified but I don't feel like she is giving me a plan. Like how to I get fitted? How do I get a glove? Do I purchase one or does it have to be custom? When do I wear it? Even now, it's sketchy as to when to wear the jobst sleeve? I also feel like I need some chest/breast compression but again, do i self order and its trial and error? I wish I could spend a day with you and ask you all the overwhelming questions that plague me from the time I wake up. I think I caused the hand swelling as I mistakenly slept with the sleeve and must have pushed fluid into my hand. Ok, I know I'm rambling but thanks for telling me about the glove and hopefully as much as I like my PT and she's been great re MLD, I will be able to get some help with the "how to's" in management.