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Cording or axillary web syndrome

GerberD
GerberD Member Posts: 9

I'm 6 weeks post BMX, with reconstruction and TE. Cording has started on the left side from sentinel node removal incision. I'm seeing a physio and doing self massage. Even knowing it's not going to be a permanent condition, it's annoying!!

Anyone have any tips? Words of wisdom.

Thank you.

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Comments

  • rah2464
    rah2464 Member Posts: 1,192
    edited September 2019

    Cording is annoying and we don't know why some develop it and some do not. You are doing the right things already. Physical therapy and massage. I am 15 months out and I have one remaining stubborn cord. I see an oncological massage therapist who has experience with cording and lymphedema. That would be the only add if the PT doesn't resolve the issue for you. Sorry you are having them though. Hope they release soon for you.

  • Yogatyme
    Yogatyme Member Posts: 1,793
    edited September 2019

    How long have others had underarm swelling after lymph node removal

  • gailmary
    gailmary Member Posts: 425
    edited September 2019

    Yogatyme, sorry to say thre underarm swelling could go on intermittently for the the rest of your life. Mine pretty much just showed up. I had slight lymphedema rarely over the last 10 yrs. But I overdid it in garden 2 months ago and ouch! Swelling is slight considering the pain. Must keep moving and stretching after warming it . Like daily. MIL lymphedema involved her whole arm. Swolen and painful often. And I hear its the same with cording.

    Best of luck to all

    GAILMARY

  • Yogatyme
    Yogatyme Member Posts: 1,793
    edited September 2019

    Gailmary, thank you so much for your help. I was afraid that would be the feedback I would get. I think I will contact the breast specialist to see if PT might help. I have been doing lots of stretching and massage throughout the day.

  • ingerp
    ingerp Member Posts: 1,514
    edited September 2019

    I posted a response to this yesterday but I think it went away. I had cording show up several times after surgery/rads, including more than a year later. For me it seemed to be related to an increase in weightlifting at the gym. The first time I called my BS's office and they said I could get a referral for PT or just wait it out and it would resolve on its own. It always has without my doing anything.

  • Yogatyme
    Yogatyme Member Posts: 1,793
    edited September 2019

    Ingerp, thank you for that welcomed response!! Gives me hope.

  • cbk
    cbk Member Posts: 323
    edited September 2019

    Ingerp

    Can cording be caused by weightlifting?

    I have a cording issue that needs attention around implants. My PS is sending me to someone that does massage, ultrasound therapy and possible Botox to break it up.

    I really do NOT want to give up weightlifting!!


  • ingerp
    ingerp Member Posts: 1,514
    edited September 2019

    CBK--the couple of times I noticed it, it *was* when I'd added or increased my weightlifting. I've been told that can happen. But, again, the cording always resolved on its own. I'd just avoid the area in the shower (kind of made me yalsey to feel it) and try to ignore it and within a few weeks it was gone. It definitely does *not* mean you need to give up weightlifting.

  • GerberD
    GerberD Member Posts: 9
    edited September 2019

    Haha yes! Even just touching the cord in my armpit freaks me out!

    And 7 weeks post op, underarm swelling has finally started to decrease. Still puffy but less firm.

  • Cricketdog
    Cricketdog Member Posts: 48
    edited April 2020

    Hello. Looks like I'm digging up an older topic but was hoping to receive more information regarding your experience with AWS and how quickly it went away. Mine just showed up Saturday morning and is causing numbness down my arm. MO this morning was worried it was a blood clot but it's definitely scarring around the main tendon down my armpit. MO indicated to use anti-imflamtory drugs (which I've read don't really help). Any other suggestions? I'm Ok with stretching it regularly and may try some heat on it too. It hurts if I put direct pressure on it or lift things that are heavier than a couple of pounds.

    Thank you!

  • GerberD
    GerberD Member Posts: 9
    edited April 2020

    Hi Cricketdog,

    Sorry to hear about your arm! I didn't have any real numbness in my arm (or don't remember!). Can you feel the cord going down your arm? I could feel mine down to wrist. Anyways, I ended up having a session with a registered massage therapist who specializes in lymphedema and cancer people. Was such a gentle touch and short appointment I thought no way this would work. But it did! Almost gone overnight. Lasted 2 weeks and then restarted yoga and came back a little. Had another session and never came back again. Granted I am not super active, like definitely no weight lifting for me!! Just easy stuff with gym machines.

    Heat helped with comfort but was told to be careful as too much can cause more issues. Not sure why. Maybe can get too hot and increase swelling?


    Good luck. Sending healing thoughts❤️


  • Cricketdog
    Cricketdog Member Posts: 48
    edited April 2020

    GerberD - thank you so much for your response. I can feel it but it's mostly in my armpit and about halfway down my bicep. It's not going as numb as it was over the weekend. I can't imagine how uncomfortable it was for you down into your wrist! I have a lot of scar tissue under my arm. Hoping it doesn't spread further into the side of my breast.

    That's great that the massage worked so well for you! I mentioned seeing a massage therapist but my MO seemed to think they only helped resolve issues with lymphedema. I'll see him again next week and if it's not resolved by then, I'll recommend the massage therapist again.

  • GerberD
    GerberD Member Posts: 9
    edited May 2020

    I would imagine all RMTs aren't trained in cord management. So I would ask around to find one who has treated them successfully.

    Take care


  • minustwo
    minustwo Member Posts: 13,065
    edited May 2020

    Cricket - PUSH your doc with everything you have for a consult with a certified LE PT. It was soooo nice to get the cording resolver.

    There's a chapter about cording on this excellent web site.

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



  • maryjv
    maryjv Member Posts: 269
    edited May 2020

    hi ladies! I had DMX 3/26 and have been feeling cording down my right arm all the way through my palm...asked my SO who said he made referral to PT but have not heard from anyone because of Covid. Wondering if you wouldn’t mind sharing massage and stretching techniques? At this point just doing a few rec by SO. Thank you for all your help! I do find the stretching has been even helping

  • Cricketdog
    Cricketdog Member Posts: 48
    edited May 2020

    Thank you, Gerber and MinusTwo (I really appreciate the link to the great article). It seems to have gotten worse over the last week. I see the MO on Thursday morning so I will ask him again. I imagine the breast surgeon can help, too. I'll call her if I don't get anywhere with my MO (who's been awesome thus far so I imagine he'll be more willing to get me to therapy since it's not resolving on its own).

  • Cricketdog
    Cricketdog Member Posts: 48
    edited May 2020

    I just wanted to update. My MO was really concerned on Thursday about the cording not going away. He sent me for an ultrasound to rule out blood clots and has referred me to a lymphatic therapist. I go on Tuesday for my first appointment. Ready to kick this thing to the curb!! :

  • minustwo
    minustwo Member Posts: 13,065
    edited May 2020

    Good luck Cricket - please let us know

  • GerberD
    GerberD Member Posts: 9
    edited May 2020

    Yes, I hope it's nothing more than cording! My physio and RMT both said cords do usually resolve on their own eventually. I think gentle stretching is the key in the mean time.

    Take care💖

  • Cricketdog
    Cricketdog Member Posts: 48
    edited May 2020

    Thank you, all for your comments and support. I've not slept well the last two nights -- I keep waking up when my arm starts aching from the numbness. I wonder if I'm sleeping on it and cutting off circulation.

    GerberD -- I had my appointment this morning and you're right -- stretching is the key. I have all kinds of stretching using over-the-door shoulder pulleys and walls in the home, as well as some lymphatic massage to do. The therapist said my situation is "significant." It's mild AWS with significant scar tissue caused by the radiation. I told her about your resolution and she chuckled, saying I'm not likely to see this go away so quickly. My range of motion is good, thankfully. I'm going to just hammer away at it, stretching when I sit on conference calls for work. I go. back next week to check progress.

    MaryJv - not sure if I can take a picture of my stretches and send them to you via a PM here. I will try...

    Hope everyone is doing well!

  • Staceycfreire
    Staceycfreire Member Posts: 1
    edited May 2020

    I developed this weeks after surgery and it was more painful than the post op period !! My surgeon gave me a list of exercises, which are pretty painful but definitely help. I’m sure your physical therapist is doing those with you, just make sure you are doing them at home as well! I had my boyfriend massage the cording to really get in there and that loosened it up so much. I also used warm compress but just be careful if you have any numbness anywhere. I read it can also cause lymphedema so check with your surgeon if okay to use. Oh, and I used a bouncy rubber ball to squeeze as an exercise, which is easy to do anywhere/anytime. Be patient, I know it’s a terrible feeling, but it will go away

  • margun
    margun Member Posts: 385
    edited May 2020

    I had bmx and Goldilocks reconstruction, on August 19, 2019. The reconstruction is donewith residual fatty tissue of the breast. My left healthy breast had longer time to heel and had harden area after the secretions from tubes was stoped. My plastic surgeon in my January appointment said that it is probably the fat is dying and it is harmless. However, since the the garden mass grew and sometimes causes discomfort. I was waiting my mammogram in zapril to confirm the idea of my plastic surgeon but the appointment is postponed to June due to Covid. I like to know if anyone is experienced such problem and if it went away eventually or not. There is anything I can do to make it go away?

  • ingerp
    ingerp Member Posts: 1,514
    edited May 2020

    I developed cording several times after my 2016 DCIS, including over a year later. It seemed to be tied to an increase in weightlifting at the gym. The first time I called my BS's office and they said they could refer me for PT or just let it resolve on its own. If it really is cording, it'll go away in a few weeks.

  • VeeHow
    VeeHow Member Posts: 33
    edited July 2020

    I just noticed my cording about 3 months after surgery which included no lymph nodes but was on the side towards my arm and partial breast radiation done about 2 months ago. I felt some swelling and pain, fairly minor, but I was worried about a lymphedema so I saw my oncologist who looked at it quick and said nothing was done there A few weeks later and I can see the cording.i don't have bad pain or swelling but the cording is quite pronounced. Does anyone know if they usually take care of this at a lymphedema clinic? I'm worried a lymphedema might be next.

  • ingerp
    ingerp Member Posts: 1,514
    edited July 2020

    VeeHow--see my post above. Coincidentally, I had some more cording show up just last week, two years after my last radiation. I've been pretty physically lazy this spring but recently started a new kettlebell routine. The cording always pops up when I've increased my weightlifting. It always resolves itself after a few weeks.

  • margun
    margun Member Posts: 385
    edited July 2020

    I am taking letrozole for 9 months. Joint pain became worse. I do not know if is the rule or eventually gets better. It is worse in my hand and fingers on the operated side so I do not know if is a combination of all. I have also upper arm discomfort for 3 weeks now. in particular when I stretch. I do not know the cause. Could be cording? If yes Will it go away and what I can do to make it better? Or Is is a sign of lymphadema? I have no swelling.thanks ladies for your a

  • minustwo
    minustwo Member Posts: 13,065
    edited July 2020

    VeeHow - it was my RO who picked it up and sent me to an LEPT. Both the BS and the PS said 'pooh-pooh'. Radiation can definitely be a problem

  • Cricketdog
    Cricketdog Member Posts: 48
    edited July 2020

    VeeHow - yes, I went to a lymphatic massage therapist at the hospital's PT clinic. She was amazing and really helped. My cording is gone but I have limited range of motion on the side of the surgery, which tells me I need to keep up with the exercises and stretching. I've been a bit lazy lately as it is still sore and tender. Hope you get some relief. I'm pretty sure mine would not have gone away easily without the therapy.


    Margun - I'm on tamoxifen and my joint pain is pretty bad. It's spread throughout my body so I imagine the cording isn't the cause. I think it's the medication.

  • Arya44
    Arya44 Member Posts: 30
    edited February 2021

    Hi, following this thread because I developed cording almost a year after surgery. It seemed to start after I shoveled snow in the recent snowstorm- so hearing that weightlifting brought it on in Ingerp’s case helps make sense of it. I did radiation in October and am on letrazol. How is everyone doing now?

  • sabbymama
    sabbymama Member Posts: 82
    edited March 2021

    I developed a large Mondor's Cord after my left mastectomy and ALND last April. I noticed it in June and finally started to receive physical therapy and lymphatic massage in December. I go twice a week for treatment and it has been very useful. Apparently I had cording down into my armpit as well that I didn't even realize. My range of motion improved greatly but the Mondor's Cord has never budged an inch, even after two visits per week for the last 4 months! Now, all of a sudden, I developed some obvious cording extending through the fold of my elbow? I can literally see them and feel them down into my wrist. It began with some pain on the top of my hand and then some swelling in the arm before I noticed the cords. My PT is stumped as to how that happened. I had seen her on Tuesday and I was fine, but by Friday all this had occurred? I have been so careful not to lift heavy objects, try to avoid injury or rough contact on that arm, I do daily stretches, and avoid sleeping on that side. So odd! So I guess I have axillary web syndrome to deal with on top of everything else? So much for them going away on their own?