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sandramj's avatar
sandramj
Member
8 years ago

Lymphodeama and auxiliary web syndrome (Cording)

Ive been back to breast surgeon a few times concerned at a few things but this week I ws ticked off when I visited his physiotherapist who told me I was 9.9 out of 10 on her lymphodeama scale and sold me a compression sleeve and gave me MORE exercises and to keep arm elevated and massage my breast for 20 mins twice a day.  This weird line of "sinew" was obvious to me running from behind the lumpectomy scar down to my low ribs. Apparently it's cording and should have been picked up in one of the many times Ive been back to breast surgeon.  
Anyway surgery was April 1st and I had six weeks of radiation and the normal burning blistering etc but thought Id escaped the lypmphodeama as I cannot feel or see any swelling,.  I was aware the breast is hotter and red and has been since surgery.  When my nipple went an odd colour then became inverted and I had thickening under nipple and most of the bottom the breast and each hair follicle looks like blackheads.  Surgeon said if I felt well all is good and to come back if I felt sick..  
Well I do feel sick now sick of not being told information by my PRIVATE SPECIALIST TEAM - Id asked a few times why did it hurt so. much when I tried to raise my left arm?  Apparently its the cording which would. have been worked on early after surgery.  Now its apparently another surgery - surprise surprise - is that not mentioned in the hope surgeons get another "Job" out of patients?
I had been trying to wear old underwired bras but they were leaving indentations like my breast was made of plasticine and surgeon. had said that was ok. His physio said NO to underwired bras - back to post surgery ones.  
Please any info on this 'cording' auxiliary web syndrome and lymphodeama would be greatly appreciated.  

9 Replies

  • sandramj's avatar
    sandramj
    Member
    8 years ago
    Thank you so much for your info.  Like many things to do with bc we aren’t told if forewarned. Not sure why - if it’s because they hope the mention might influence us getting it. Or if they’re not prewarning unless the percentages are over 50%.  Thank goodness for this online site. And we are all here for the same reason with the same type of cancer.  And each journey is completely individual but so many things cross over.  Very grateful of this site and YOU & YOUR input.
  • Zoffiel's avatar
    Zoffiel
    Member
    8 years ago
     I've had enough cording to restring a significant part of an orchestra. It seems my irritability, both mental and physical, knows few bounds.

    The Lymphoedema physios I've seen both post mastectomy in 2006 and more recently since my recurrence/wide excision have tried all sorts of things to ease the discomfort. I've had ultrasound and low level laser treatment, miofascial release, stretches...the only thing that works at the moment is a revolting friction massage to physically break the cords. Initially this process had us both in tears, I still cry but the current physio goes about it with all the enthusiasm of a kid popping bubble wrap. It still comes back after a few weeks. Which is, apparently, not common.

    The info on why some people develop this condition, and what exactly it is, is vague. I keloid scar and have ferociously encapsulated a couple of sets of implants. Like I said, I'm easily irritated. It's impossible to describe the sensation to someone who hasn't experienced it. Horrible. Mine took about two years to resolve after my mastectomies, I'm not keen on another twelve months of this but fear I'm stuck with it. Phooey. :(
  • Brenda5's avatar
    Brenda5
    Member
    8 years ago
    Cording and lymphodema comes and goes with me and will probably be life long as I have had all the nodes cleared. At the start it was horrible and took a lot of self massaging to get it down but now its pretty good. The cord bit I massaged a bit harder and it was like popping bubble wrap and eventually it went down. Sometimes on a walk I feel the arm stiffening again so I hold it over my head for a bit and it settles. I think the key is not to let it get away with too much. Don't lift heavy things with it, and self massage a lot.
  • Mollygirl's avatar
    Mollygirl
    Member
    8 years ago
    Gah, chopped my post off...
    make sure they give you a really structured exercise program post this surgery and that will help to prevent it returning. Best wishes and big hugs. Bec xxxxxx
  • Mollygirl's avatar
    Mollygirl
    Member
    8 years ago
    Hi @sandramj, firstly, I'm so sorry you've had to go through all of this. I had cording after my lumpectomy in April too I could see it from axilla down arm to wrist. I saw a fabulous OT here in Brisbane who lasered it for me and massaged. Took a very long time to get better. I was also told to ditch under wires for a good few months. I really hope this can be sorted out for you as I know cording is really painful and it's awful having your range of movement restricted by it too. Unfortunately some of us are just prone to it
  • primek's avatar
    primek
    Member
    8 years ago
    The exercises will stretch it. I had it within a few weeks of surgery and the puffy feeling under the arm and breast inflammation got really bad during chemo. I was wearing body compression stuff and massaging to keep it down. Once chemo finished my lymphodema physio did laser to the most painful areas. Once that was done...3 sessions is all it needed the armpit puffiness went. I had normal arm movement and don't need my compression sleeve. Breadt puffibess has now gone. When travelling now I find a pillow under my arm stops the lymph drainage being cut off from lack of movement.

    Most is very treatable without surgery. Hopefully this will be the same for you. The stretches are painful but can snap that web.  X
  • Afraser's avatar
    Afraser
    Member
    8 years ago
    Hmm. Sorry, apart from feeling that you have been messed around a bit, I can't shed any light on the cording. My lymphoedema was noticeable simply because of my wristwatch band. I suddenly realised one night it was tighter than it used to be. No pain, no discomfort. Do you have any fluid around the breast? They are apparently not necessarily associated although my therapist snorts quietly at that! The bra is another slight mystery to me, I wore the same wired bra post surgery (mastectomy) as I did before - was perfectly comfortable, didn't touch any scar and also my scar didn't hurt. There may be a bit of a professional "position" here. Perfectly sensible not to wear one if it's uncomfortable or potentially rubbing on skin that's already been damaged. Only changed when I finally got a prosthesis. I think it's reasonable to expect some action when something hurts! I hope that whatever the next procedure is, it works. My oncologist and surgeon talked to each other right through my treatment (still do) and my therapist picks up the phone to anyone she feels she needs to, quick as a flash. Has lulled me into a possibly false belief that everyone behaves like that! Best of luck, hope you get some clear answers and some relief.