Topic: GRRRRRRRRR I HATE LE..........

Sep 10, 2019 03:10AM - edited Sep 10, 2019 03:12AM by edj3

Oh that's pretty!

Here's the one I wore today:

Sep 10, 2019 09:10AM edj3 wrote:

No, it's Juzo. I liked the Lympediva ones a lot but they don't come in the size I need (super small, long length). I was bummed :(

Sep 10, 2019 12:03PM mammalou wrote:

I like your sleeve! I am going to have to get more brave. I’ve contemplated wearing a sleeve on each arm so it just looks like a long sleeve shirt. Lol!

Sep 14, 2019 11:30PM HersheyKiss wrote:

Lou, the sleeve should be a snug fit.

My Juzo sleeve has a wristband construction. It sometimes leaves a slight depression in the skin there. My LympheDIVA sleeve has no wristband, so there is not a depression.

Oct 11, 2019 01:17PM mammalou wrote:

I wore my nighttime garment for the first time last night. It was difficult to get on! I woke up with what looked like protruding veins running up and down my arm. Is that how it should look

Oct 14, 2019 12:51PM cwins1218 wrote:

Hi everyone,

I'm so emotional..I never knew about lymphedema. I had a crap BS. My plastics team has been great but they didn't take the nodes, my BS did. She seemed to be upset that I decided to have a bmx with a DCIS stage 0 diagnosis. But I decided it after 6 months of taking tamoxifen, doing a ton of tests and wanting the most absolute assurance I could get to be cancer free. She really focused on telling me how bad a bmx would be over a lumpectomy. All the while I could have had lymphedema either way and she never once explained this possibility to me. and now I believe I do have it! I thank you all..reading these posts have helped me. She took close to 10 on one side and 3 on the other. I chose to have the DIEP surgery and now after my second phase, I'm noticing my arms swelling, my stomach swelling. ripples and tightness. I go to PT tomorrow to talk about a LE treatment. But it was my plastics team that referred me not my BS!😡😡😡

If anyone has any suggestions, I'm taking them all. I have a vacation to fly on Novembet 13th. Should I start researching compression garments again?

Thank you in advance,

Crystal

Oct 14, 2019 03:07PM cwins1218 wrote:

Thank you MinusTwo, this is crazy to think that this isnt something told to a patient the minute they start talking about removing the lymph nodes. Which they immediately told me I had to do regardless of my elected surgery. Some, a few or all can result in this. But moving on....

Thank you for the link and I'm reading it now! I will be getting those items. which I'm sure the PT LE specialist will suggest. Then my doctor may figure out it is why I am so uncomfortable.

Crystal

Oct 15, 2019 02:50AM MinusTwo wrote:

JO-5 - Well to start, yes the Sydney bra is a 'pull on', but you can step into it and pull up. I did that when I wasn't supposed to move my arms up over my shoulders. This site has a video about donning garments. https://www.wearease.com/

There is a 'pocket' for a prosthesis, but since I have implants I've never tried them. My PT therapist was particularly pleased with the high back & under arms.

The company representatives are great about answering questions and their return policy is very generous. Give them a call 866-251-0076 and discuss your particular needs. They might suggest other styles that might work for you. Disclaimer - I have no connections with the company.

That said, I wear a Belisse Bra when I fly because that's what I started out with in the beginning. It's heavy & confining with zippers & hooks & velcro, and I can hardly wait to pull it off when the hour post touch down is over. I'm sure there are others out there that work as well (maybe even a WearEase model), but I tend to be a creature of habit.

Oct 15, 2019 10:38AM MinusTwo wrote:

Jo - I can imagine your frustration. Hope you find something that helps.

Oct 29, 2019 10:42PM InnaB2018 wrote:

mammalou, I totally empathize with you! I hate it so much, that go next week for lymphedema surgery consultation. Even if there’s 50/50 chance to get rid of this nightmare, I’ll take it.

Nov 8, 2019 01:35PM Vargadoll wrote:

would live to hear the outcome of the appointments! I'm in compression 24/7. I've gotten used to the night garment the cover that goes with it does not stay closed good witch gets a little annoying. And until I figured out where something over top of it it was wearing holes in my sheets!

Nov 18, 2019 12:26AM Vargadoll wrote:

Lynn, I had it about a year and half. My LE therapist told me to call that they would replace it and it my surprise they did! They just wanted me to mail my old pieces back to them. They provided the postage to!

Nov 21, 2019 02:42AM - edited Nov 21, 2019 02:42AM by mammalou

I have left arm and trunk lymphedema. I just got cellulitis in my face. Ugggggg. Do you think there's a relationship between lymphedema and cellulitis somewhere else in your body?

Nov 22, 2019 01:20PM JO-5 wrote:

Somewhere ...waaay back in this thread someone, (I think it was Binnie) posted a site for head and neck massage.

I printed it out and do it when I feel my neck is swelling. I've had a bad sinus headache for a week and decided to do the head and neck massage and it actually helped.

When I do the head and neck I go ahead and do the upper trunk and arm. It takes a while but worth it.

Some say no massage if you have cellulitis but it might be a good idea to try it after the cellulitis is over.

I will look for that site....but perhaps Binnie (if it was you) will post it again. It is the best one I've found for the head and neck.

Joanne

Nov 22, 2019 11:52PM JO-5 wrote:

These are the face neck and head massage that I do. Maybe you can enlarge and print. It is from Aurora Health....and you can find it if you Google (Self Massage for Face and Head). It is a PDF.

Joanne