Does anyone have CORDING without LE?

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FLwarrior
FLwarrior Member Posts: 977
edited June 2014 in Lymphedema

I wasn't sure where to post this.  This was the closest area I could find.  If I need to remove it and post it some where else, please let me know where to go and how to get there.  (I am NOT liking this new format of BCO at all.)

Does anyone having cording without actually having LE?  If you do, I would like to hear about your experience with it.  What triggers your cords to show up?  What do you do to make them relax, reduce, or go away? 

I think that is what I am experiencing, but I am not sure...

Edited for typo...

Comments

  • 1openheart
    1openheart Member Posts: 765
    edited May 2012

    FLwarrior....I had something called Mondor's cording after my pocket revision on the reconstructed breast and the lift on my natural breast.  I did not get it after my mastectomy because the incisions were not under the breast like they were during the revision and lift.  It was very painful and tender. The cords went from right under my breasts down into my abdomen.   The cords on the lift side lasted for about 4 months post op and the ones on my reconstructed side are just now going away after the Nov. 28 surgery.  I am seeing a wonderful myofascial release trained physical therapy group and they have helped me immensely.  I only had one node removed in the SNB and so far, no signs of LE.

  • Marple
    Marple Member Posts: 19,143
    edited May 2012

    FLwarrior I think you've posted in the right forum.  Cording doesn't MEAN you'll get lymphedema but it can be a contributing factor. 

    I had cording but I also have LE so I won't elaborate on my experience.  I do know stretching helps........a lot.  I had cording and didn't even know what it was at the time but I had an urge to stretch which I did.  It resolved.  I suspect professional intervention would be a good idea.  Someone more knowledgeable than I will hopefully come by soon.

    Hugs.

  • 1openheart
    1openheart Member Posts: 765
    edited May 2012

    Where is your cording?  Under and down your arm (axillary web syndrome) or on your chest wall (Mondor's cording).   I had Mondors which is a superficial thrombosis of the veins in the trunk of the body.  My surgeon suggested gentle stretching, moist heat compresses and aspirin to help break up the clots.  It is not real common, but according to him and all that I read, it is not dangerous and does not cause any real problems other than the discomfort.  They eventually go away.  Mine were not going away as quickly as most, so I asked my PT to help.  I am so much better now.

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited May 2012

    I had cording that ran parallel to my SNB incision and down my inner arm.  One visit to an LE specialist, my cord was popped and never to be seen again.  I had seen a generalist PT who attempted some lymph massage, who also suggested self-massage, but the real result came with the  LE specialist.  I can't remember if the LE PT said cording and LE were related or not, but my BS said they were not.

  • FLwarrior
    FLwarrior Member Posts: 977
    edited May 2012

    Thanks openheart and Marple.

    This thing I suspect is cording has happened several times.  It is a pain and hurts to touch on the top of my hand (1 inch in from the web between my thumb and index finger) on the UMX/SNB side (Aug 2010).  I had 4 nodes removed.  If I raise my arm straight up and pump my fist, which I do any time I suspect anything is going on, it also hurts in the inside bend opposite of my elbow, and sometimes on the inside very upper arm and axillary area. I have seen two tiny harp string looking things in the inside upper arm area at times. If I continue raising my arm every few minutes and it seems to relax a little more each time and finally relaxes itself out and then there is no more pain to the touch.

    The thing that seems to trigger it is either heat or bending over...the last two times it happened was after I had worked outside in the yard.  Both times it was hot and I had been in a stooped over position quite a bit. Does that mean some one else should poop scoop and pull weeds??? LOL!  Last weekend I went kayaking and had no problem. It was hot, but I was not in a bending over position...???

    Thank ladies!

  • lago
    lago Member Posts: 17,186
    edited May 2012

    I had more cording in my right arm than my left (right after BMX). My left arm has minor LE. My right arm (knock on wood) seems to be OK. 10 nodes left, 4 nodes right. No rads but did have chemo (taxotere/carboplatin)

    Currently no cording

  • FLwarrior
    FLwarrior Member Posts: 977
    edited May 2012

    Kam was your cording right after your surgery?

    I did not have this issue right after surgery.  I did go to an OT right after surgey and got all of my ROM back.  I had an adhesion that she broke loose. It was a very good thing.

    This "harp string" thing and the pain in side bend of my elbow and top of my hand is fairly new. It has happened three times in the past month.  I am 9 months out from surgery.

  • FLwarrior
    FLwarrior Member Posts: 977
    edited May 2012

    Hi Lago.  Do you still have cording or was it just after surgery?

    No rads for me either, but I did have chemo (FEC/taxotere).

    So far I have been very lucky not having any signs of LE.

  • lago
    lago Member Posts: 17,186
    edited May 2012

    No cording now. I had to go to PT to get rid of it. It can take a while but if you keep up with the stretching exercises they give you it will go away. Don't ignore this. It can get worse if you do nothing.

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

  • FLwarrior
    FLwarrior Member Posts: 977
    edited May 2012

    Lago, thanks for the link.  The pictures show exactly where I am have tightness and pain.  Axilla, inside bend opposite elbow and top of hand.  I must have a very mild case of webbing.  I do not have anything nearly as visible as the pictures.  The times I have seen them they are tiny cords, like piano or guitar strings, not the rope size.  So far each episode has resolved in a day or two with stretching, massaging and sleeping with the effected arm elevated.

  • lago
    lago Member Posts: 17,186
    edited May 2012

    Mine were not as bad as that photos on that site either.

  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2012

    Florida Warrior, my cording came on a couplle of weeks post op, but those little piano wires/harp strings have shown back up again--sometimes for no reason, and sometimes with increased activity.

    I don't think it's the bending over--I think it's the pulling weeds that bring it on.

    Some of the LE PT's who know a lot about cords think that old cords can hang around, possibly for a long time, and act up occasionally. They are "fibrosed" lymphatics and some veins and sometimes the body resorbs them, and sometimes they open back up and sometimes they hang around as scar tissue.

    When mine first popped up, I felt it down into my thumb.

    Kira

    I HATE this format also.

    Oh, I forgot to answer your question: cording is a risk for LE, especially early and extensive cording, from stepupspeakout--there was a study in British Medical Journal, if early PT could prevent LE, and it did--except for the women with extensive early cording:

    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"

    My LE followed a ton of early cords, but it was a cascade of events: early stretching overhead, big axillary seroma, tons of cords, then bug bites on a hot day--and a surgeon who wasn't delicate with my tissue--her goal was a cosmetically great lumpectomy and she literally rearranged all my tissue. Talk about trauma and bruising....

  • FLwarrior
    FLwarrior Member Posts: 977
    edited May 2012

    Thanks Kira.  I pulled the weeds with the uneffected arm, not the UMX/SNB arm.  That is why I thought it might be the bending over or heat that triggered it.  With frequent raising of my arm straight up, pumping my fist, a little light (finger) brushing, and a refreshing shower, the episode resolved in several hours.  I was fine today.  The only thing that I felt this morning was a little bit of tightness in the axilla, and that is gone now. 

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited May 2012

    My cording developed after my SNB.  I had my BMX a month later and I was at the generalist PT, trying to resolve this issue, before my BMX, so it occured after the SNB, but before the BMX.  Once the LE PT popped it, it never recurred, atleast thus far.

  • Sonata
    Sonata Member Posts: 221
    edited May 2012

    My cording came following my BMX/axillary node dissection in November 2011. It resolved itself over a few weeks time. I thought that was the end of it. Not so. It has since returned a couple of times, most recently this week. I've tried to pinpoint the causes but it seems to just show up periodically. Most times for no reason at all.

    Unfortunately, unless I want to pay heavily out of pocket, I am unable to see a LE PT because my crappy insurance doesn't cover phys therapy of any kind for any reason. So I've been fighting this on my own for 6 months now. But I digress...

    My worst pain is at the base of the thumb and at the bend of the elbow. I can feel the 'piano wires' at the bend in the elbow. Its painful, but for now, I must live with it.

    And one other thing to note, I've only ever had the cording in my right arm, which is the cancer side. Even though I had a BMX with many nodes removed on both sides. Odd how it picks and chooses, eh?

    ~Cate

  • lago
    lago Member Posts: 17,186
    edited May 2012
    Southern Soprano I know the place I had my PT will charge less if you have no insurance. Something about the "agreed upon" price they have to charge with insurance. It's crazy I know. So maybe see how much a few sessions would cost. At least you might get educated with some at home exercises and guidance.

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