Cording

Lisa, I had cording just as you described....I could not lift my arm past wait high and I could not lift anything either....I went to my onc who said it was ocrding and she gave me exercises to do......I kept doing the exercises my onc gave me and nothing helped.....I eventually had to go to a therapist who specialized in women with BC issues......It was very painful but all 12 or 13 of my cords were eventually "popped" and I got full use of my arm back...Like I said it is VERY painful when they do the massage and pop the cords but it is immediate release and relief......I have a strong pain threshold so it was not much of a big deal for me.....Where do you live?.....Maybe you can find a group call Turning Point for Women....They do all the massage and therapy for LE and cording.....Good luck to you........

I have been reading on this thread a bit.  Thanks for the advice, Southport.  I tink I will try the message.

Meece

I had 2 nodes removed in July of this year and am just finishing chemo this monday. I have been getting this pulling pain near my elbow but on the inner side. Is this possibly cording? I am overweight and it's hard to tell but it feels lumpy but I can't find any defiitive lumps. I had atypical cells-no malignancy- in one of the 2 nodes they took and always felt they should have gone back in to take more but my surgeon refused. How can you tell if it's cording/LE for sure? Would LN mets hurt like this? I meet with my onc in 2 weeks and will be sure to mention it.

I still have an old cord in my elbow--it feels like a piano wire. And it will act up if I'm too active.

Check out the diagram on the web page--you can see where the cords run.

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

Kira 

I thought that I was over the cording and swelling - massage, stretching, generally being careful - but just this week it has reccured worse than ever. No apparant reason. very depressing. Am now wearing a compression sleeve. Sigh.

Neece, do you have a LE therapist? I sounds like time for a recheck if you do, and if you don't it sounds like time to find a good person.

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

It's normal to feel really upset when this stuff flares.

Kira 

Hello.  I just found this site.  I had 2 surgeries, April and July, finished radiation October 2.  I noticed some pulling under my arm and armpit area.  Went to PT, they massaged, then i got fluid under my arm.  They started me on exercises and it's gotten worse.  It is so tight and painful and now with the fluid, i don't know what's going on.  The PT told me it was auxillary webbing, but why the fluid.  I've laid off the exercises, and guess I'll go back to the surgeon.  I'm supposed to go back to the PT, but things have gotten worse after 5 treatments.  Can anyone shed some light on what's going on.

Kawee, axillary web is a risk factor for lymphedema, and there can be some lymphedema associated with it--the cords are thrombosed lymph vessels. KAK is right--there is no national standard for lymphedema therapists, and so many don't know anything about axillary web.

You might want to check out the credentials of your therapist (and credentials don't always mean a good therapist, but it's a start)

Re-reading your post--I saw exercises--well, I have difficulty with exercises--I'm fine with stretching, the Lebed method--but things like theraband are horrible for me. Also, I have to wear compression garments when I exercise. I want to strengthen my arms, but the theraband just hasn't been good for me.

So many PT's (not KAK) are indoctrinated in the model of assess, treat and discharge--which doesn't work for lymphedema, as it's a chronic condition. Often, they are quick to recommend exercises, and repetitive motion can make fluid worse.

For axillary web, the main exercise is stretching: slow over head, sideways and child's pose with arm's in from. And lay on your back with arms overhead, and twist your knees away from the affected side to give you a whole body stretch. 

Hope you get relief and answers soon.

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

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

Kawee, that sounds horrible--anything that hurts is NOT good--this is NOT a no pain/no gain situation, this is a pay attention to your body situation--anything that hurts or causes swelling is a bad idea.

The bar overhead with pressure on the elbows is not a good idea, IMO. The study on weight lifting that was released this year by Kathryn Schmitz had women lift no weight to start, and only gradually add weight as tolerated, and they wore custom compression garments, and had specially trained therapists and were evaluated immediately for flares. And they only got to be in the study if they were rock solid stable.

I like this web page from the Lance Armstrong Foundation, it was written by Jane Armer who is a noted researcher:

http://www.livestrong.org/site/c.khLXK1PxHmF/b.2660675/k.2E2B/Lymphedema.htm 

Here's what she says about exercise:

Activities such as walking, swimming, light aerobics, bike riding, and specially designed ballet or yoga may be included in your individualized exercise programs with appropriate conditioning.

Here's some info from the stepupspeakout site

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

http://www.stepup-speakout.org/Weightlifting%20and%20Lymphedema.htm 

Going to some school for it doesn't cut it--the "gold standard" is 135 course and a year of supervision, and even with those credentials, some people aren't as good as others.

If the clinic in San Luis Obispo is good, it's worth the drive.

Kira 

Kawee, I second the comments about the exercises. With my recent recurrence of axiallary web / cording, and swelling in the affected arm and hand, I am trying to do the stretches as described by Kira above, on a daily basis - at least twice per day. When I first do them it is uncomfortable (ie very tight feeling) but I hold each stretch of 30 seconds and it gradually loosens up the tightness. Any exercise you do should NOT make the discomfort worse but better the more you do it.

I have been seeing a LE therapist however she is finished for the year now until next Feb so I am sort of on my own. I do have a diagram she gave me showing self / carers' manual lymphatic drainage massage, that I am trying to do a few times a week.

The sleeve I wear for periods of a couple of hours when I am being active (doing housework etc) I am not sure if it helps. When I take it off my hand is even puffier though that doesn't last. It is such a confusing and mysterious area (and as others have commented, so little known about)

Bettye and Neece, you do want to wear a glove or gauntlet with a sleeve as the sleeve can push fluid up to the hand. Compression is tough, because it can help, but it can also trap fluid, cause "dents" that aren't helpful to lymph flow. So good fit and a good fitter are key.

Second you on hating this disease.

Kira 

I use an exercise ball to stretch. Lay across the ball on your back, stretch your arms out to the side.  I worked up to holding each one of these for two minutes.  You are so right easy does it.  If it hurts back off.

Next I put both arms over my head.

Next childs pose using the ball to rest my hands on.

On your knees for all of these.  Next both hands on the ball, roll the ball to the left until you feel a good stretch. Then roll to the right.

These are great

Bettye

Hi everyone,

Just to respond to Kira's q my sleeve includes a glove. I think I will go see the therapist again while wearing it to show her and see if it is fitted correctly.

Thanks for the info.

I noticed that after my last chemo tx (10 days ago) while I was in bed for about 3 days after, my arm /hand swelling reduced and the tightness eased. Once I was up and about again it got worse! I just don't get it.

I have swelling in my hand which appeared about a week after air travel (and about three months after mast).  I also had anxillary cording that was going away but then came back right around the swelling.  I did where a sleeve during the flight and noticed just a little swelling in my hand.  Then, about a week later, my hand and wrist began to swell more so I wore the sleeve - but like Kira said, it probably only kept the fluid in my hand.  I was very anxious as I was having reconstructive surgery the following week and was afraid of what kind of swelling would occur.  I went to a lymphedema therapist who drainage/massage and bandaged to get the swell down.  She wanted me to get a custom glove that would go beyond my wrist instead of a sleeve/glove combo.  Because I wanted to get something before my surgery, I ended up getting a glove that only goes to my wrist as I was told I would need "custom" for a longer glove.  I like the glove, but it sometimes feels really too tight so I don't wear it all day long.  I feel like the swelling comes and goes thru the day but its not awful but I'm interested in a better solution.  Kira, what kind of custom glove will you be getting?  When I talked to the fitter at the store that orders the compression garments, he acted like getting a custom glove was crazy. Grrr!   Thanks in advance!

Glad I happened upon this thread. I think I have AWS (cording) also. I had a mx and ALND on Dec 11th and have had this cording since. I've asked the surgeon and nurse about it a couple of times because it's painful and really bothering me. They just keep telling me to do the exercises (which I am) and to take pain meds (which don't seem to help), but now I'm thinking maybe I should go see a PT as it seems to be getting worse rather than better. I see the surgeon tomorrow and will ask if I should be referred.