Can you get lymphedema if you only had sentinel node removed?

Wow - that's an interesting story! I have thought about going to Costa Rica - or even traveling to New Zealand within the next year but your story makes me think twice. Good to know to wear a sleeve even if you don't think you will have a problem! I am happy to hear yours is mild and controllable. Is the sleeve uncomfortable?

I had my lymphedema assessment (L-dex) last week and I am down 2% from previous post-op reading - but still up 7%. I am within a "good range" so I am happy. But I do find it really peculiar to have lymphedema without having had axillary dissection - and I really want to get closer to my pre-op levels. It's my understanding the sooner you reduce, or get lymphedema under control, the better the long term outcome.

As a side note, one of my drain tubes got tugged on and bleed for a day - at removal, and throughout healing the wound was more fibrous than the other side; and it appears more or less to be glued to my thorax. This adhesion lead to fluid build up above and below the incision and puffiness around the tube wound. I didn't worry about it too much because I was a month or so out from surgery and you have to expect swelling. But it looked like an big fat old-fashioned donut - where the donut hole (wound) puckered in. Following my first post-op L-dex and new exercises being suggested, this area ballooned into the proverbial "side boob" - but I referred to it as my pooh belly and second belly button. My lymphedema OT showed me a cupping technique to lift the scar (wound) tissue from the wall and promote draining. It worked - I saw a slight reduction of fluid the next day. She also used kinesiology tape arced above and below my actual belly button to lift the skin (funny, I thought it would compress) from the abdo wall and promote better drainage to my abdominal lymph nodes. I was just starting to loose the abdominal pooh- belly and now it is back! I suppose it's better to have fluid on the tummy versus a post-op chest or chest wall. Seems many of us never loose the pooh belly and when I told my OT this, she measured my belly so that we can assess fluid movement. I will continue to use the kinesiology tape (shown how to re-tape) and hopefully my abdominal lymph nodes will eventually capture the excess fluid. Time will tell..

I am thinking kinesiology tape could be used on the limbs if compression sleeves are uncomfortable, etc. My next appointment is in mid-November and I'll ask my OT - maybe not; maybe it is only suitable for mild lymphedema. Good to luck to all resolving any continuing issues -

@anatomary

Mine came up during a flight and trip to Colorado- high altitude. Not bad, but enough to go to a lymphedema specialist-she was an OT. I wear a compression sleeve, and a compression bra ( it’s almost length of a camisole)with swell spot when I fly. Sometimes in the Texas heat I’ll need to wear it do my lymphatic massage. And get out of the heat for a bit too.

I had virtually all left side nodes removed (they couldn't find a 'sentinel' and now 2.5 yrs later indications of lymphedema only in my left hand. They've prescribed a compression sleeve and glove for 10-12 hrs a day, but I don't see any improvement. I even think it might be making things worse as my hand looks a bit more swollen after wearing these. I read one study that did show improvement in the compression group over a year, but interestingly, 30% of those in the none compression group didn't deteriorate at all...