Does Cording Turn into LE

Hi, Deb!

Cording doesn't turn into LE, but there are some experienced lymphedema therapists who note from their practice that it's a complication that may raise the risk of LE somewhat. Plenty of women have cording, get over that, and don't have LE.

Here's information about cording (called Axillary Web Syndrome, or AWS):
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

And here's information about finding a well-qualified lymphedema therapist near you. S/he can not only help with the cording but take baseline arm measurements for future reference, give you personalized LE risk reduction tips, and fit you for a sleeve and glove (or gauntlet) to use for exercise or travel. Yup, you need a referral, but you can get one from any doctor on your team, even your PCP.
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Thinking of you, for sure, as you start chemo. Keep us posted, please, on your progress!

Gentle hugs,
Binney

Do the stretching exercises where you walk you arm up the wall.  Best place for me was in the hot shower and did it daily.  It takes time but mine completely resolved. 

DebRox, I had a ton of cording right after surgery, and even now, whenever I try theraband exercises, an old cord at my elbow pops up.

Weights do not make cording better: per my research on the subject and going to lectures by national experts. Gentle stretching, and some ibuprofen (if you can take it) will help.

I finally found a good PT who was also an LMT to resolve the last of the stubborn cords.

And, unfortunately, I did get LE while in the midst of extensive cording: got bug bites on a hot day---just learned it was a record heat for the day.

Binney wrote that cording doesn't turn into LE--but it is a risk factor for it. Cords are clotted off lymphatics, so the lymph system is stressed. A recent article looking at early PT to prevent LE found it worked--except in the women who had a ton of cording post op--many of them developed LE. 

That said, there's a whole lot more cording than there is LE. 

Good for you to hang tough and get the referral.

We did put a page on stepupspeakout for health care providers, and there's section in it about cording/axillary web

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

Axillary Web Syndrome is a risk factor for lymphedema: In a study of early PT to minimize lymphedema, a subset of patients who developed axillary web syndrome at 3-4 weeks post-op had an almost universal development of lymphedema, despite intervention http://www.ncbi.nlm.nih.gov/pubmed/20068255

BMJ. 2010; 340: b5396. Published online 2010 January 12. "We also found that 12 of the 18 women who developed secondary lymphoedema had axillary web syndrome during the second and third week after surgery. The axillary web syndrome is a known but poorly studied complication of surgery. No study has shown any link between the axillary web syndrome and the onset of secondary lymphoedema. We and others suggest that the axillary web syndrome may be a sign of injury to the lymphatic system and it could produce a lymphatic overload as a result of failure of the lymphatic system. This overload, together with other factors, could be responsible for the onset of secondary lymphoedema"

As to why doctors don't deal with this directly, we've debated this a lot, and the consensus on this forum is that they don't know what to do and the care is fragmented, so when faced with a problem they don't know how to treat or diagnose, they tend to ignore it or punt to another member of the team. Hopefully, we'll get the word out there, and this will happen less often, but it's all too common.

Just met a woman from the UK with LE, who had to see a psychiatrist because her GP thought she was obsessed with her swollen arm...Finally they diagnosed and treated LE, but it took almost 2 years.

Stinks.

Kira

DebRox, there's a study that took women who started to swell and got them a sleeve early, and most did really well and the LE got better and was well controlled. (Nicole Stout PT published it a few years ago, and they're replicating it at Mass General right now)

Here's my take on it: I know you're frustrated, but timing is key.

You don't want to take a stressed lymphatic system and over stress it more by increasing blood flow and causing inflammation due to weight lifting.

There will be plenty of time to resume slow and steady exercise down the road.

Right now, things are too unstable--you have cording, you're not far out from surgery and  you're getting chemo--your system is stressed.

I know you love to lift, and that time will come, but you don't want to injure an arm that's at a weak point right now.

Go slow, respect the limits of your lymphatic system, and preserve the function in your arm, and the time for more vigorous exercise will come. 

It stinks, it really does, and you're not whinig, just reporting on the general suckiness of the situation.

Kira

I agree with Kira. Take it slow and follow the protocols. There will be time to get back in shape. I am doing my PT religiously and slowly regaining my strength. I am so proud of myself because for the first time in years, I was able this past week, to lift a small luggage into an overhead compartment on a plane. A miracle.

Beacher, welcome! I've been following your posts over on the PMPS board and hoping you'd find good help soon. This page might help with finding a good therapist:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Let us know how we can help! Gentle hugs,
Binney