VISIBLE SIGNS OF LYMPHEDEMA - A PICTORIAL

Question for all:  After getting a consult to a PT for tightness in my underarm and breast I was told yesterday that I have cording.  Does this mean I also have LE?  I can't find much info on it.  Thanks for your help.

LindaLou-  Old news but thanks very much for the pix!  They helped me know what to look for.

Baldeagle I would call on Monday because you will go crazy waiting till Wednesday. Try to keep the arm elevated ( over the heart). Also don't get too sweaty but walking might get the fluids going. Keep away from salty, water retaining foods. Drink fluids.

Most of all don't freak out or get bummed (like I did). Right now it sounds like you have a very manageable case (like mine). I have never wrapped. I could give you exercises but I feel you need to get these from a PT to make sure you are doing them correctly.  I think it was weeks before I got to see the MD for my LE because he was on vacation. Then another week before PT. It really didn't make a difference for me.

I had a feeling I had it after my 2nd chemo. After my 4th chemo was when I noticed the swelling. 

About pinning this thread: yesterday the moderators took all of our pinned threads and put links to them together in a single category at the top of the board, called "Key Lymphedema Threads (former stickies)". It's a resource for newbies so they have somewhere to start looking for information and asking questions. There are links there to the following three threads:

Visible Signs of Lymphedma

MBCS: Tool Predicts Arm Swelling in Breast Cancer

Instruction on How to Wrap Your Hand and Arm

They had also included the RIBP thread, but kindly removed that one when requested, so the RIBP ladies can more easily find their thread, and so that newbies don't think it's early LE information.

I don't know about the rest of you, but I think the MBCS prediction tool is extremely flawed and shouldn't be part of anyone's self-assessment process. It's a nice stab at trying to predict risk, but the science just isn't there yet to support such an attempt. There are still many factors we can't account for, so I for one would like that removed.

How to the rest of you feel about that?
Binney

Thanks for the information. This has really upset me and I feel so defeated. I am right handed and all I can see right now is a lifetime of dealing with this. I hate FBC

Baldeagle, this is another hard-to-digest elephant, but you can do this -- one bite at a time! We all sure hear you on how distressing this is, but I want to assure you it really does get better--honest.

First bite is getting an appointment with a well-qualified lymphedema therapist. Start tomorrow. Any doctor on your team can write you a referral. Please let us know how it goes. We're here for you.

Tell us how we can help! Gentle hugs,
Binney

Thanks, Binney. I plan to call my MOs office in the morning. Its hard to fathom right now that this will get better, so soon after my surgery and right in the middle of tx. I feel like I've done almost everything I was supposed to do (i.e. pay attention to what I lift, no repetitive motion like sweeping, vacuuming or raking) and it still happened.

Any suggestions on transitioning from right-handed to left?

Lisa, I see bald eagles out my window most days, and they are a very focused bunch of birds!  You, too will find you can zero in on a few good strategies to understand LE and craft a strategy to move forward.  Along the lines of Binney's comments, I have become very aware that I use my nondominant hand for lots of the brute-force work that we all do in daily life. My LE is in that arm, so I've had to remind myself all the time to transfer the heavy load to my right hand and let the LE hand do some of the finer work.  All of which to say--I wonder if in your case, you are already letting your non-LE limb do the heavy lifting, which is a good policy and can only help you here.  I will admit to getting frustrated when I try to type wearing my compression gauntlet, but then I just remind myself that it's slowing me down, and that means (glass half full) that I'm taking more time to think about what I write instead of just dumping thoughts!  You will find ways to look at the glass half full, I promise.  And a good measure of that comes from all the amazing support you'll find in the LE forum here.  Having LE PO's every single one of us...so we're a good group to dump frustration on, because we've all been there in some degree or another.

Do keep us posted!  And if you find that walking or any kind of exercise is a sanity strategy for you while under stress, consider joining the kick-LE's-butt thread.  We would love to see you there!

Carol 

Lisa--I have LE in my right arm and I am right handed.  I was wrapped for 3 mos and now wear a sleeve and gauntlet.  I was so clutzy with my left hand and always said I could never become left handed.  But with some loss of tactile sense with gauntlet I realized I was using my left hand/side more and more.  I often do something with my left hand when I could have used my right.  I was told recently that I was lucky I was left handed since my LE was on the right!  My left hand automatically reaches out.  It was a gradual phasing in.  I now use both and no longer baby my right as much unless it is heavy lifting.  Good luck to you!

Hi Ladies - Just checking in with an update. Its hard to believe it has almost been a month since I was here last! I have been going to an LE therapist for two weeks now. She wanted to see me daily for 2 weeks but I couldn't afford to take that much time off work and would also have to pay my insurance co-pay of $20 at every visit. So, we agreed on a MWF schedule.

I have Stage 1 LE and early stage cording. I've been fitted for a sleeve and gauntlet and will probably order them on Monday. Did anyone purchase from LympheDIVAS? Some of the designs are so not me but I've narrowed my choices down to a couple. I'm not seeing a tremendous difference yet in swelling reduction but I can tell the range of motion in my arm is better. I can certainly tell I'm doing the correct exercises - I can "feel" each of them!

Hope you all are doing well. Again I thank you for the advice and support. LE has become an added feature to my new normal and I'm going to make the best of it. TGIF!

To anyone who's been wrapped - I was wrapped today and I'm already having some discomfort in my elbow, mostly on the inside and underside. Is this normal? I can feel constant pressure on the rest of my arm but the elbow area is painful when I bend it.  Also because of the way it feels, I want to shove something under the wraps and scratch! Most of my work involves a computer so bending is a must! What can I do?

Baldeagle, pain isn't good: if it really starts to hurt--consider taking it off, or calling your therapist. You don't want a bad chafe.

The elbow area is tough: my therapist cut me a piece of gray foam to go over the elbow on the outside, and I wrap over it with artiflex and we apply the bandage to go above the elbow, around the arm and then criss cross back over it.

It's crucial that a wrap allows freedom of motion at the wrist and elbow. 

I've had therapists wrap me too tight, and it hurts. My LE therapist doesn't put much stretch on the bandage, but adds layers for compression, and it's actually, comfortable.

Give the therapist a call, if it's bothering you.

Kira

reposted with permission of Dunes:

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Momx3, are you using any compression on arm and foob at night?
Binney

thank you so much for sharing your information. education is so important.

educating ourselves as we travel down "unknown" paths gives us light and understanding.

i learned many things that i did not know about lymphedema. i recently had my left breast removed and 14 lymph nodes also removed. i can feel areas that seem "not quite right" in the healing process. now i know what to look for...i had a wonderful doctor and staff to help and support me through this surgery. but, few see the importance to educate one on the "out-skirts" of what to look for after surgery and also in the area of preventive care. this has help me out tremdously and i will certainly pass this on to others. thank you also for the pictures, visual aides are so helpful. i go to my doctor in August for a follow-up visit. i do keep swelling in my shoulder, arm and hand on the left side...and there has recently been a low consistant pain under my arm and on my left side. this i know, after reading your article needs to be addressed when i go to see my doctor. thank you again, for helping me.

terrie daniel

adrian, ga.