New Questions about Lymphedema

Sloan15

A lot of us have questions, but we are not sure which existing lymphedema thread to post in. Since newbies and veterans will look at this thread, maybe we can help each other since many of us are finding that our doctors don't know much about lymphedema (and it's hard to find a specialist). Post Q's here, and PLEASE post answers if you if you can help others out. Thank you so much!

Sloan15

Help! I had a lumpectomy 2 months ago, and 2 nodes removed in SNLB. I had tightness in my elbow, about a month later. I get some swelling - about 1/2 cm or so- but it's better if I elevate it. I have a "weird" feeling in my inner arm and tingles in forearm most of the time. My surgeon thinks I'm fine Ann's it's nerves reconnecting, but our local "specialist" - a guy who for his certificate a month ago- says I have lymphedema. He said to wear my sleeve 3 to 8 hours a day. They fitted me for a sleeve, and asked ME how it fit... I don't know! I have so many Q's no one can answer: Since I might be Stage 0, should I wear it only when I go to exercise or cook/garden/busy? Is it okay to put it on when I start to feel this weirdness, or should I wear it even if I haven't noticed swelling? If I start to swell or feel tightness, can I just put it on then? I don't have a glove (but I will get one based on some of your posts!- but should I wear one at this point for everyday wear if I'm not noticing swelling? Any help or advice would be GREATLY appreciated!

glennie19

Sloan, it sounds suspiciously like LE to me. Tingling, weird feelings,,slight swelling that gets better when you elevate it. Not so sure about your local "specialist",,, is there any other LE therapists in your area?

I would definitely recommend you wearing your sleeve when you are gardening, exercising,, doing things that could place a "load" on the arm. A gauntlet or glove is often a good idea, cuz you don't want the sleeve to push the lymph into your hand. Wearing it a few hours a day might not be a bad idea.

Have you checked out StepUpSpeakOut,,, there is TONS of great information there and a place where you can look for therapists.

Hopefully others will be along who can chime in on your questions,, but it is a holiday weekend, and things are often slow around here on weekends.

Sloan15

glennie19 - thank you so much. I think it's LE, too. I was just cooking, and my forearm feels weird again (but no swelling). I will check out the site you recommended. Some of the people talked about preventive care, so maybe that's the way I need to look at it.

Do I take the sleeve off when my arm feels tired of it after 4-5 hours? Or, how do I know when to take it off?

glennie19

Yes, think of it as prevention,, or at least maintainence at stage zero. It takes some getting used to,, wearing the compression. Try going up a little bit of time every day, if you are at 3 hours now,,, try for 3.5 hours tomorrow. It's hard to know how many hours you need to wear it, but I would wear it some every day,, and especially when doing anything that gives you the weird feelings. But don't sleep in it. These types of sleeves are not meant to be slept in.

Binney4

Hi, Sloan, and welcome! Sorry for the reason that's brought you here, but glad you found us. Here's the StepUp-SpeakOut page about proper fitting of sleeves and gloves:

http://www.stepup-speakout.org/proper_fitting_of_l…

Like so many other aspects of lymphedema care, it pays to know all this information ourselves, and then seek out the best care available. Glennie's given you good advice on managing your garment-wearing. A gauntlet or glove will give you some peace of mind and may prevent the difficulties of hand and finger swelling. Use your garments for exercise, travel (even driving) and any unusual or strenuous activities, including housework and gardening. Long hours at the computer can also strain hands and arms and may call for garment use as well.

Gentle hugs,
Binney

Kicks

Just having 'a sleeve' is not an answer for all of us. There are different levels of compression and the wrong level can make LE worse. For me, I need light and heavy makes it rapidly and radically worse but light works great - for others it's the other way around.

Not all of us 'fit' into OTS (Off The Shelf) garments - I don't at all. For me, there is no way that I can wear OTS gloves at all - my hands/fingers are slightly webbed so the PTS cut in and make big HURTING. Gauntlets don't work for me. My arm does not match OTS sleeve sizes either in the compression level I need. So for me it's only custom.

Basically I have my day garments on all the time I am ' up' and use my night garment at night. I also use my FlexiTouch (MLD machine) daily. We each have to learn what works for us, individually. For me heat is not a problem (for some it is) but cold is nasty. The more exercise I get - the better.

There are day garments and night garments. They work on different principles. Day garments are for 'active' - when we are up and moving around/active. Night garments are for 'passive' - when we are sleeping/not moving around.

We each have to learn what works for us. What works for me does not work for many but it does for me - there is 'No Size Fits All' so have to learn for yourself.

Sloan15

Kicks- thank you. I am learning with help from all of you. It's just such a steep learning curve going from no bc to surgery, LE, chemo, rads, tamoxifen, and having my doctors not know about LE.

Meme117

Sloan I'd recommend getting a referral to a lymphedema specialist from your breast surgeon. I had 13 nodes removed with lumpectomy last month and my surgeon referred me at the follow up visit as a preventative. I do not yet have lymphedema but have cording. The specialist is a physical therapist with a special certification. She is teaching me self massage and ways to help prevent lymphedema.

Sloan15

meme - thank you. I went to one specialist, but I didn't think her was very good. I'm going to try another person my surgeon recommended. I'm just struggling to find someone in my town who understand it.

ml143333

Made an appointment for a lymphedema evaluation for next week.  I have noticed over the past few months that my affected arm looks puffier than my non-affected arm and sometimes my elbow hurts and my arm just feels weird.  I talked with a friend of mine who has severe lymphedema issues and she said that it is better to get it checked out early rather than later if that's what it turns out to be.  I will check back in when I know more.  Thank you.

glennie19

Good move, Mandy. Keep us posted.

Kicks

The sooner if is checked out - the BETTER!

tessu

First visit to LE specialist today. She was very reassuring, said 7 weeks post-op is still "early days" and feels my hand edema will not be permanent. Said the off the shelf compression sleeve and glove from the hospital were the wrong size, started me on night-time wraps instead, hope I can remember how (ok I've got a video but am just too pooped to watch it today). She's of the Vodder School; the head rehabilitation doc at the hospital said she's the best in the region. I kept this on for a few hours today but took most off (except the hand wrap) so I could cook dinner