New Axillary Cording > 6 months postop. Anyone else?

Toomuch--if you're getting new cords and more swelling, time to undischarge yourself from the LE therapist.

Any axillary irritation can cause cording, and radiation sure is irritation. And those of us who have had cords tend to get them again. I got them again from some theraband exercises I got from a PT.

This is the "acute" phase, so if you can tolerate motrin or aleve it can help with pain and inflammation.

When I had cording, wrapping seemed to help.

It will go away, but I'd advise letting your LE therapist know what's up. Sometimes they don't get that this is a chronic condition, and we need on-going care.

Let us know how you're doing.

I"ll put in the AWS link, I'm sure you've seen it

http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

This really is Too Much! Enough already.

Kira

Toomuch, Kathleen Francis perhaps? Other women on this forum have consulted with her and found it helpful, even to just assist your other doctors.

I get so steamed when LE therapists act like LE is an acute problem. She kept you on longer than normal--that's the right thing to do, IMO.

Kira

Steelrose, we put a page on stepupspeakout.org for health care providers, just FYI

http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

If they read it, they'll learn something about cording.

Kira

Well, phooey, Omaz! Were you wearing a glove or gauntlet with the sleeve? Has your therapist checked to be sure the sleeve is a good fit (long enough, not too tight at the wrist, and so on)?

Here's a page about proper fit of garments:
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

And here's one about why you need hand protection when you wear a compression sleeve:
http://lymphedivas.com/lymphedema/gauntletandsleeve/

Is your therapist experienced in treating cording? Some see and treat it a lot and others have little experience with it.

Be well!
Binney 

I do not have arm/axilla cording, but have developed cording from the breast/TE area down to stomach on both sides (BMX in Dec 10 with node disection on left only).  I can not stand a bra, and when this developed on one side about 3 weeks ago I was clueless as was my PS.  I will show him again at appt this monday.  Is there anything to do for this cording??

Linda Lou,

Thanks so much for this info, I will do my research before my visit with my PS on monday.  When I saw him he seemed clueless on last visit ( I was suprised he had not seen this before), at that time there was just one area, now about 3.  I have had some tenderness since my surgery, and assumed this was just normal with the surgery and tissue expanders.  I was a huge fan of NSAIDS prior to surgery for aches and pains, but have not been able to take with chemo because of reflux, and will check with onc this week and may try again since I am now taking protonix for reflux.  I have vicodin for pain but much prefer ibuprofen 800.  Thanks for the info, going to goggle Mondors too.

Omaz, if the sleeve doesn't fit well and causes swelling, it's not helping you to wear it. You don't want to push fluid into the hand. Here's a link to the importance of wearing hand compression with a sleeve:

http://lymphedivas.com/lymphedema/gauntletandsleeve/

Poorly fitting compression can trap fluid, and that's the last thing you want. Time to get remeasured, to reassess the need to compression and to get a gauntlet for if and when you wear a sleeve.

For now, just elevate the arm when ever possible, do deep breathing and hydrate. And if you can stand the stretches, give them a try.

Kira

Omaz, glad the swelling is down. When I developed axillary web syndrome--I googled it to figure out what it was--once this situation settles down, you'll be able to exercise, right now, with the cords, your lymphatic system is more stressed, as the cords are lymphatic vessels that aren't doing their job.

Do the stretches help?

Kira

Omaz the place my BS surgeon sent me to for sleeves/fitting was clueless. At the time I only needed the sleeves as a preventive for flying so I didn't know they were a problem till I actually got LE 2-3 months later.

I was on the cusp as far as length but they gave me the regular length which was too short. My gloves are actually too short for my fingers but I don't even really need the glove (gauntlet would be fine) because my fingers don't swell. You can see that the fingers are too short! They also gave me a sleeve with silicone on the band. I don't need this since I have slim arms even with the LE! When I went back to them to replace the sleeves they kept pushing the silicone! They just wanted to sell me what was on the shelf but I made them order what I needed.

My next set of sleeves I am going elsewhere (place that both my LE MD and LE PT recommends).

But that wasn't even the worst part. When they ordered the sleeve I wanted to keep wearing my old ones till they came in. They actually instructed me to fold over the top so the silicone wouldn't touch my skin… this would not only make the sleeve even shorter but also add more compression to the top of my arm. CLUELESS. I will be letting my BS know in the future that this place s*cks.

* So I would recommend having your LE PT measure you for a sleeve. If you are having swelling on your lower arm (me too) the longer sleeve is a must. What a difference now that I have a proper fitting sleeve. If I actually did need a glove I would have to get a custom fit. According to my LE MD he says off the shelf gloves usually never fit. He was surprised that mine fit well except for the finger length.

Kira and Lago - Thanks!!  My daughter and I remeasured my own arm and my upper arm is actually too big for the sleeve as well, I need the max version for the top of the sleeve.  Paired with the larger upper arm I have a small wrist, so after much reading my sleeve size was ok but the length was too short (I definitely need a long!!) and the top was too small (fat pooching out).  So I ordered myself an adjusted size that makes more sense.  I also ordered the non-silicon version since the silicon beads pull my skin.  THANKS SO MUCH for your kind words and support, I don't know WHAT I would do without them!!!  I will keep stretching (gently) and look for someone here who knows how to deal with the cords.  Sheesh you would think with only 2 nodes removed I wouldn't have a problem but the radiation was to that area as well as the breast so I guess that's what set it off. 

One of the main things my LE MD wanted my LE PT to do was to stretch out the cords. She did some massage too (and taught me some to do at home). My LE MD cut me loose from PT once I got most of my range back… but my LE is mild. I will be following up with my LE MD in 3 months.

sounds like we are the exact same stage. I'll try and make pdf's of the exercises my LE PT gave me to do at home. I'll upload and send you the PM you the link when I'm done.

One thing is not to over stretch. Do just enough to feel the pull. Gradually you will be able to stretch more.