Did you have axillary web syndrome (cording) after ALND?

Anonymous · December 2016

mellee · December 2016

I had a bilateral mastectomy with immediate reconstruction, plus sentinel node biopsy and Level 1 and 2 axillary lymph node dissection (with 32 total lymph nodes removed) on November 8. Within a few days of surgery I noticed pain and tightness on the inside of my arm running down from my shoulder to wrist.

Almost 4 weeks later, the pain and tightness are still there, along with visible cords in my underarm area. It's painful to straighten my arm completely and excruciating when I combine a straight arm with shoulder abduction exercises (e.g. lifting the arm straight up to the side). However, I can move the arm without pain so long as my elbow is bent. Range of motion in the shoulder seems okay.

I've discovered that this is known as axillary web syndrome, or cording, but the information and research is mixed. Some say it tends to go away on its own within a few months. Others say it's important to get into physical therapy early (and that at-home stretching won't necessarily do the job).

Curious what others have experienced. Did you experience axillary web syndrome, and if so, how long did it last? Did it go away on its own, or did you have to go to PT? What exercises (if any) helped?

Moderators · December 2016

Dear mellee,

Welcome to the community. We are sorry that you are dealing with this issue but glad that you reached out to us. While you are waiting for some of our members to join in with their thoughts here is some information on our main site with respect to Axillary Web Syndrome. Keep us posted on how things go for you. The Mods

SpecialK · December 2016

I did have cording and axillary web after ALND, and would recommend that you seek out a certified lymphedema therapist to help you with any PT. My axillary web did dissipate with therapy. Wishing you the best!

tsoebbin · December 2016

I agree with Special K. I also had cording. It was on both sides. The right side was a lot worse. I took Special K's advice and did see a lymphedema specialist and I'm so glad I did. I have lymphedema so I'm still seeing them, but they really help with the cording.

It does get better, but it's a pain in the rear!

mellee · December 2016

Thanks for the advice, SpecialK and tosebbin. I will definitely seek out a lymphedema specialist.

How long did it take for your cording to resolve? How many PT sessions?

Bellini3 · December 2016

Hi Mellee, yes I had hideous cording after my surgery. I saw the physiotherapist who taught me some stretching type exercises, which I did. It gradually resolved completely over a few months.

SpecialK · December 2016

mellee - the cording and axillary web resolved relatively quickly, def within a couple of months with twice weekly appointments with the therapist. The waters were a bit muddied as I also have lymphedema which developed simultaneously with the axillary web, but it was also greatly improved within that time period and I was taught self-massage (MLD) and safe exercises. Certainly not everyone with cording goes on to develop LE so I don't want that to worry you, but seeing someone certified allows you to be treated in the best and safest way.

mellee · December 2016

Good to know! I will talk to my surgeon tomorrow about getting a referral to a therapist and will report back on how it goes.

jenjenl · December 2016

I had this same thing. I couldn't life my arm past my shoulder. I did 6 weeks of PT - 2 times per week. She also did a 1/2 hr of myofascial massage/release. Game changer! Don't wait. I did not have lymphedema.

Anonymous · December 2016

I had cording right after surgery. It was like a tight rope from my armpit down to my elbow. I thought it was permanent but it went away on its own (no massaging, just light stretching). I saw a LE therapist for a few weeks but I didn't feel like I got that much out of it, and it was expensive. After my 6 weeks were up she said that I would need another referral if I wanted to keep going, and it may not be covered. So I stopped going and did exercises at home. Now I notice that I get pain and tightness when the weather is cold or when I do some repetitive movements. The minute I get my arm warmed up, the pain goes away and I can move again. I keep my arm covered all the time.

I also feel like I have some nerve damage, because the pain can go down to my hand and it tingles. And that also prevents me from extending my arm all the way. It's a weird feeling and no specialist doctor knew how to deal with it. But my primary doctor told me to take a B complex, and that has helped with the nerve pain. He didn't want to prescribe any nerve pain medicines because the side effects were worse than the benefit. So for anyone having nerve pain, I'd recommend at least trying a good quality B complex.

BlueKoala · December 2016

hi

I had cording. I saw a lymphodema specialist within two weeks of my surgery, she diagnosed the cording, and sent me to the physiotherapist she works with. Two sessions with her, I think a week apart?, and it was all cleared up. She said mine was probably easy to fix because we got it so early.

MinusTwo · December 2016

Loving: Below is a great thread that has more info about LE. The tingling in your hands could be Lymphadema or neuropathy. B vitamins can sometimes help, but I'm hoping you learned to do MLD.

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

Jennie93 · December 2016

Yes, I had bad cording. None of the docs knew what it was. Never got any help from any of them. Finally got referred to PT and the one gal thought she could "massage it away". It was VERY painful, and I woke up the next morning with LE. So please be careful and do not let anyone do anything to you that hurts, no matter how they claim that they know what they are doing.

mellee · December 2016

Just reporting back that my cording got visibly worse in the month following surgery. At 3 weeks post-op you could clearly see the cords in my armpit, but the cord running down my arm was not as obvious. By 4 weeks, the cord on my arm was much bigger and easy to see. But for whatever reason, the cording started getting better on its own after that point. By 4.5 weeks, the cords were less prominent, I had much greater range of motion, and less pain.

I still went to the physical therapist in post-op week 5. She did lymphatic massage and then worked on the cords. Like others have said, I heard a pop as the cord in my elbow area released. It didn't hurt and I experienced an immediate increase in range of motion. So feeling positive about resolving all the cording issues!

However, I am worried about lymphedema. My right arm is 2 cm larger than the left. I'm hoping this could still be residual swelling from surgery.

mellee · December 2016

Thanks again for everyone who chimed in on this. Just wondering what stretches worked for you. My PT only showed me the front wall crawl for the cording. Anything else I should be doing?

BlueKoala · December 2016

http://www.cancer.org.au/content/about_cancer/factsheets/Breast exercises after surgery_fact sheet_September 2014.pdf

This was the leaflet i was given before i left hospital, if that helps.

mellee · December 2016

Thanks, BlueKoala!

tennischick888 · December 2016

Here is a link to a video which demonstrates some good exercises. I did the exercises in this video before I went to see a certified lymphedema specialist referred by my breast surgeon. I had cording in one armpit and did 8 sessions of PT. My therapist gave me at least 8 different types of stretches. Although the cord is still visible, I have almost full range of motion. My therapist stressed the importance of doing my stretches everyday.

https://www.mskcc.org/cancer-care/patient-educatio...

GypsySue · January 2017

I had axillary web syndrome but my story is different from any I have heard. I had no history of breast cancer. Routine mammograms were always negative (no lumps or suspicious lesions detected). Starting in Jan 2012, I began to experience an itchy armpit. This itchiness increased in frequency until October 2013 when I began to feel a tightning in my armpit which limited my range of motion. Concurrently, I discovered cording in my armpit. Finally, I had a physical symptom to present to my GP which sent me down the path of MRI's, biopsies, and PET scan which revealed cancer in my breast, axillary lymph nodes, and spine. A breast cancer surgeon who I consulted speculated that the cording was caused by nerve damage caused by the cancer raging in my lymph nodes.

The good news is that, with hormonal treatment, my cancer is now diminished and stable. The cording has disappeared and I now have full range of motion in my armpit/shoulder.

Nancy2581 · January 2017

I had cording. It didn't develop right away , but actually several months later. Weird. I had just 3 lymph nodes removed and aLumpectomy and still got it. It did hurt somewhat and my onc asked me if I wanted to do physical therapy. I never did it though if it bothered me greatly I would have. It went away on its own but did take awhile

Nancy

SuC · January 2017

I did but it went away with 2 sessions of physio

mellee · January 2017

Thanks for sharing your experiences. Sounds like it's different for everyone, but the common thread is that is resolves. That makes me feel better!

Mine is still pretty bad, but I can straighten my arm now. Small victories!! Hopefully with more PT it will improve quickly. I've only had 1 session so far.

reneeCA · January 2017

Hi Melee

Ironically, I had no cording until I went to PT. I had 3 good sessions with the owner/therapist, then was sent to another MLD therapist in the office who performed very aggressive manipulation way under both armpits. The next day I had a cord that went from armpit to elbow. Later in the day, my prophylactic side (no nodes taken out) began to ache & I had stabbing pains when I moved it. Felt around and feels like a guitar string in there, too. Can you even get cording on side where no nodes were removed?

I was able to get my arms to 105-120 degrees on each side. Now I am down to ~45 degrees with pain.

Feeling defeated to say the least. Not sure if I can go back to PT. Maybe the cords were going to happen anyway but it feels like that one aggressive PT/massage made things worse.

dcbc · January 2017

Hello, all -- you are my heros! I am 10-days post surgery, and had severe pain shooting from my armpit across my back (but not originating near my sutures) since day 2 post-op... Still not sure if lymphodema is present but my LE therapist saw cording, and will be doing twice-weekly sessions starting tomorrow... your experiences have lifted my spirits considerably! The pain associated with this has been far and away the worst part of this whole experience... and the only thing that has caused me to cry... even initial diagnosis and non-clean margins post-lumpectomy didn't do that.

Thank you!!!

mellee · January 2017

Tennischick, what were the stretches you did? Were they the regular post-mastectomy exercises, or were they specific for cording?

mellee · January 2017

Hey Renee,

How are the arms? Have they improved at all since you posted?

I've read some women on these boards talking about developing cording after breast surgery even without sentinel biopsy, so I think it is possible to get it on the side where you didn't have lymph nodes removed. If it feels like a guitar string, that sounds like cording to me.

I felt severe tightness and pain before I could see the cords, so if you weren't already experiencing that, I bet the aggressive manipulation did set it off. A friend of mine who is a physical therapist really warned me to be gentle with cording. She said don't push yourself too much with stretches and back off when it hurts. Apparently, cording is related to inflammation. It's not like muscle tightness or something that you just power through. The PT should be treating it like they treat a nerve problem, not a muscle problem.

Supposedly, many cases of cording spontaneously resolve, and I know that my Frankenarm (as I not-so-affectionately call it) has gotten a lot better pretty much on it's own (I've only been to 1 PT session due to the holidays & other wound complications). And my cording, pain, and range of motion was REALLY bad. I couldn't even straighten my arm for over a month. And I seriously considered throwing a party when I could actually shave my underarm on that side. So even if it's bad now, it can get better.

I think the key is to give your body a rest and allow the inflammation to heal.

Fightingirl · January 2017

would like to join in and hopefully go back and read through all these posts. I have developed cording and am about 3 weeks post op. It seemed to just get the worst it's been when I woke up Saturday morning. I cannot straighten my arm and have pain that rinds inside my arm down to my elbow. It actually hurts just to touch the skin in that area.!still dealing with seroma in my armpit as well. I had hoped once that went down I would regain more mobility in my arm but it is smaller now and no such luck! I began researching AWS " cording" this evening and found the seroma doesn't have anything to do with it anyway. Silly me...thought maybe the fluid was putting pressure on something causing my pain!

dcbc · January 2017

Fightingirl!!! Sorry to see you here as well as in the Jan group, but glad I can give you some thoughts on my experience. I had cording from my armpit down my arm almost from day one after my lupecomy in Dec, as well as some very severe nerve pain along my upper lat. My surgeon put me into PT with a lymphodema PT (trained just for this type of thing) and it was so very helpful.... cording is caused by the swelling, so lymphodema massage and exercises as well as massage of the cord itself made a huge difference over the month between my surgieries. She also gave me small exercises I could do at home to slowly work the cord and gain mobility. The cord was nearly eliminated before I went into second surgery and my mobility is so much better. I will also admit that a friend shared a joint with me one afternoon, and that had a very noticilble and positive impact on the cord . When I mentioned it to my PT she said that was not surprising, as the relaxing properties of cannibus often have that effect. It is a terrible thing to have to deal with given everything else; but it is something that a little attention can correct so there is good news ahead. Good luck-- push for a properly tra

lisabekind · January 2017

I think I have cording in my right armpit where the sentinel was. The day I came home from the hospital I noticed it. I thought it was my drain tube. But after reading about cording. I think that's it.

I'm 5 days out from surgery. I can lift my arms, but my right feels like a brick is on it. Also under my arm from shoulder to elbow has no feeling. Anyone else dealing with this?

Fightingirl · January 2017

dcbc, I'm going to call my surgeon today to see if she can recommend PT. Also, I will totally try the pot...would never have thought of that...been on the anxiety medicines since surgery and pain pills right after so have not been wanting to put anything else in my system but curious to see if it works. Thank you for the advice!

lisabekind, so sorry...this cording pain stinks!! Mine is definitely not numb...it was right after surgery for a few days but now I just have pain when I move my arm certain ways. Getting clothes over my head is tricky! I have pain from my armpit to my elbow that is actually very tender to the touch rather than numb. Hopefully it goes away soon for bot of us!

Did you have axillary web syndrome (cording) after ALND?

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