Cording

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  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited January 2010

    Thanks Kira!  That is a big help.

    Anita

  • Neece
    Neece Member Posts: 270
    edited January 2010

    Just to add to Kira's great list of stretches above, my therapist suggested holding each one for a long time - count to 30.

  • MarieK
    MarieK Member Posts: 911
    edited January 2010

    I've been struggling with cording & arm trouble since 3 weeks after my surgery. 

    At first it was the armpit/upper arm area - you could see the cord under my arm when I tried to lift it.  I couldn't lift it above my shoulders and the pain was located in my under arm area mostly but with a "twinge" in the inner elbow.

    I saw my BS who referred me to a PT.  I did the stretching exercises and worked through it.  I had a few months of relief.

    Then came time to prepare for Christmas and although I didn't lift anything I did "push" a few things around.  I probably did too much because the next thing I knew I had that same cording feeling but now it was in my forearm.  I couldn't straighten it out and my inside elbow area was very tight and sore.

    I did more stretching exercises and worked through that and now have full mobilityand no pain in my arm.

    BUT about a week ago I noticed some pain on the back of my hand that felt like I had banged it - you know that sore bruise-y feeling.

    I swear it's the cording again but this time it's in my hand with pain in my wrist when I try to stretch it out.

    Has anyone else experienced this? 

  • BettyeE
    BettyeE Member Posts: 267
    edited January 2010

    Yes, I have had the same burised feeling.  I have tried to describe this to Dr.'s  I always used the word "sore".  This web site is so wonderful.  It helps just hearing others describe what you are feeling.  I felt all along.

    Maybe we will find some answers!

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2010

    Marie, I've had cords come back--and there's no mistaking that pulling feeling, and it helps when you can see one.

    But, also, when I'm holding fluid, it hurts--so my hand, wrist area have been sore when there's extra fluid there, until it goes away.

    So hard to sort all this stuff out.

    Bettye, I almost have the stretches ready to go up on stepupspeakout.org--just running them by the other directors and a couple of PT's

    Kira 

  • melissa-5-19
    melissa-5-19 Member Posts: 391
    edited February 2010

    KIRA you have had cords return? can you tell me how long from leaving to the retiurning time frame and what truggered it?

  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2010

    Melissa, my first cording was full blown axillary web with the classic onset about two weeks post op, and I had many cords, and an axillary seroma--it was during this time that I developed LE of the hand.

    Then, last fall, I saw a LANA certified PT who was horrible--when my arm measurements were equal (yes, the swelling is mostly in my HAND) she had me do theraband exercises without wearing compression, and I could feel my arm pit area becoming sore, and a big cord popped back out.

    I stopped the theraband exercises, switched to another PT, and she worked the area and the cord went away.

    I stretch twice a day, or I tighten up, so it wasn't from lack of stretching, it was from the exercises, don't without compression.

    Lots of women have them come back, and sometimes you feel piano wires of old cords that haven't fully resolved.

    Kira 

  • Neece
    Neece Member Posts: 270
    edited February 2010

    I have had cords go away and return! Such a nuisance. The sore feeling in the back of the hand can be due to that - I had pain there too, but can also be due to fluid as Kira mentioned.

  • Bigapple09
    Bigapple09 Member Posts: 440
    edited February 2010

    I have had cords come and go twice. The first really big one which was down my arm into my hand, was about 3 weeks post op, it followed two airplane trips, I can't recall how long it was there.

    The next one was on my trunk, after a long car ride from NY to Delaware in traffic wearing an under wire, it seemed to be right where my cell phone case pressed against my body. That one was only a week or so, and because of the location i was able to break it up as the PT had shown me.

    Both seemed to be related to a slow in the lymph system caused by altitude and being sedentary as well as decreased hydration. I am flying to new Orleans in a few weeks, I'll see what happens.

  • Niknak0320
    Niknak0320 Member Posts: 138
    edited February 2010

    I am so glad I found this thread!  I was seeing a local PT for convenience after my double mastectomy with 20 nodes taken from the right side but I recently switched to a Lymphadema specialist practice that my rads oncologist recommended and her knowledge of cording was so much more than the local PTs!  It's a pain to have a 2+ hour total commute but I think it'll be worth it in the end,  I also can go as much as I really should because I have a $30 copay for each visit and I just can't afford it right now :(  She is very helpful to show me as much as she can in our one hour sessions so that I can be working aggressively at home :)  She ordered a sleeve for me and I can't wait to get it and see if it's helpful!  I also am very anxious to get started on lifting weights to get rid of some of this arm flab!!

  • DaylilyFan
    DaylilyFan Member Posts: 80
    edited February 2010

    I haven't been warned away from my weight-training routine or advised to wear a compression sleeve.  I still have some cording, but it doesn't seem to affect my range of motion.  Next  PT appointment is tomorrow, so I will ask about the sleeve.

    I have heard second-hand reports (friends of friends) that lymphedema was suppressed by Vitamin C and Q-10 supplements.  Might just be coincidence, of course.

  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2010

    Bump for Lainey

  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited February 2010

    Well good news.  My cording has all but dissappeared.  I have an appt on Thursday with a PT that specializes in lymphedema and cording.  I want to still go to gain more info and exercises to stop cording or lymphedema.  I will also ask if they can order a compression sleeve as I would like to start weight lifting.

    Thanks Kira for all the information.  It has helped me tremendously!  I am so happy to be pain free.  I wish I knew what I did to bring the cording on.  I was doing a lot of lifting when I was putting away christmas items. 

    Anita

  • AuroraL
    AuroraL Member Posts: 33
    edited February 2010

    After my 2nd surgery last year I had a cord develop from below my breast over my ribs, but none in my arm.  Just last week it came back again--why would this happen?  I do yoga several times a week so I am all stretched out.  Should I be concerned about this?  Last year it resolved on its own.  But I'm troubled as to why it would come back.  Has anyone had cording in this area over the ribs?  (I had 2 surgeries to get clean margins and radiation.)

  • Kyta
    Kyta Member Posts: 713
    edited February 2010

    HI everyone

    I had an mx and nodes removed Dec 11th and had cording almost immediately after surgery. I started physio about 3 weeks ago and the cording is just about gone and my ROM is almost normal. It has helped so much, along with the massaging she does and the at-home exercises that I do.

  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2010

    Aurora, it's not clear why they come back--possibly the cord--which is a thrombosed lymph vessel, kind of gets inflammed again.

    The usual explanation is increased activity, but sometimes it just happens.

    Although you're stretched from yoga, holding postures involves muscle strength--maybe that's it.

    The most problematic yoga position is Downward Dog--lots of pressure on the arm. 

    Definitely lots of women get cords down the side--some people call that Mondor's disease, but that has more venous issues.

    Consider a PT appointment, or one women who posted her, gently put traction on her cord on the side, and it eased up.

    Kira 

  • AuroraL
    AuroraL Member Posts: 33
    edited February 2010

    thanks, Kira.  This current bout is easing up, hopefully it won't come back!

  • blessedby4
    blessedby4 Member Posts: 157
    edited March 2010

    Hi Ladies, can you help give me some advice?  I have noticed the past week that my wrist and top of my left hand is swollen and feels very tight, kind of hurts!  I had a left mx back in June and reconstruction surgery in December.  I did have a problem with my left upper arm in the late summer and went to see a therapist and then that problem went away.  Do you think this feeling and swelling is this "cording" or is this lymphedema or are these two things the same?  I have not heard of anyone just experiencing this in the wrist and hand area, I always thought it was an arm problem.  It is not an awful problem but noticeable and the jobs I have require heavy lifting and lots of arm movement constantly. 

    Any thoughts?  Thanks so much for your help!

  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2010

    Good morning, Blessed!

    Cording and lymphedema are not the same thing. There are several women here whose lymphedema started in their hand, or even in a finger or thumb. I'm not sure what kind of therapist you saw last summer, but what you need now is an evaluation by a fully-trained lymphedema therapist. Here's how to find one near you:

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

    Blessed, this may not be a serious problem for you at the moment, but lymphedema is staged, just like breast cancer is. Without proper treatment it will progress, if not with more swelling, then with fibrosis and further lymph damage in the tissues inside. It also remains a serious infection risk, and prompt treatment can reduce that risk as well. 

    You can get a referral to a lymphedema therapist from any doctor on your team. In the meantime, elevate your arm as much as possible, stay very well hydrated, and pause to take a few deep abdominal breaths throughout the day. If you can't be seen shortly an Isotoner therapeutic glove (which you can find on-line) may help  contain the swelling until you can start treatment.

    Do keep us posted! Gentle hugs,
    Binney

  • blessedby4
    blessedby4 Member Posts: 157
    edited March 2010

    Binney:  Thanks so much for responding.  I saw someone last fall at the hospital who evaluated me for lymphedema and gave me some exercises to do.  She hooked me up to some new machine she said that it can now tell you whether you have lymphedema or are on the way to developing it.  I was clear for not having it according to this machine.  I found it odd that the top of my hand is swollen opposed to my arm but as you have stated I guess it can start there.  I don't understand why this would start suddenly since I don't remember doing anything to my hand or arm.   I do not seeing it get worse but will keep a watch on it and look into that glove you mentioned. 

    Thanks for the input!

  • llm822
    llm822 Member Posts: 77
    edited March 2010

    Hi all -

    I've developed a cord in my left arm last week after having some lymph nodes removed on 3/2.  I saw a PT yesterday who gave me some gentle stretches to do for about ten minutes, twice a day - the stretches feel great but the effect doesn't last long.  I've been out of work since the end of January, when I had a bilateral mastectomy (I work at a childcare center and I need to be able to lift about 30 lbs before I can return).  I know it's got to be a slow, gradual process, but I wish there was *something* I could do to move things along.  I'm feeling REALLY frustrated by this and just needed to vent.  Thanks for listening!

    Lisa

  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2010

    bump for hymil

  • brazos58
    brazos58 Member Posts: 261
    edited November 2010

    I developed cording w/i 2 weeks of Bmx's....i likened it to havinging a vine running down and around my bicep into my fore arm....I felt tethered and could not fully extend my forearm. They felt like hardened veins.... just running parallel to them.I thought I might have had phlebitis from IV' or Blood Draws in the Hospital...... The Big Cord was much thicker in my Axilla aka armpit and that decided to have cords branching down into my chest... heading towards my incision and drain scar.

    I had 6 weeks of LE/ PT

    Now LE/pt wants to see me as I have 3-4 new cords since discharge.... next week.

    My BS tells me this will all resolve on its own. Its very FREAKY. Esp to have such confilicting schools of thot.

  • Binney4
    Binney4 Member Posts: 8,609
    edited November 2010

    Brazos, it's not exactly conflicting. Cording will resolve on its own (though it can reappear), but seeing a Lymphedema therapist familiar with it can really ease the discomfort and also help you learn stretches that will help resolve it (and also help you deal with it should it happen again). So, yes, it'll resolve on its own after a couple of months, or you can get help and have an easier time of it. Here's the StepUp-SpeakOut page on cording, which has been up-dated with information from the September, 2010, International Lymphedema Conference:

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

    Hope you get prompt relief! Be well,
    Binney

  • brazos58
    brazos58 Member Posts: 261
    edited November 2010

    Binney, Thank You again!

    I see LE/PT this week....they want me to use my arms and see how my axillary/ arm swelling is comming along with increased use. And see what is up with these new cords.  My Glove/Sleeve does not fit, have to work on that as well.

    Happy Saturday to All  :)

  • kira66715
    kira66715 Member Posts: 4,681
    edited November 2010

    Brazos, you made me remember a recent article in BMJ about how early PT can decrease LE, except:

    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.54 61 62 No study has
    shown any link between the axillary web syndrome
    and the onset of secondary lymphoedema.
    We and
    others32 50 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. When axillary web syndrome
    was diagnosed in the postoperative period in the intervention group, specific manual lymph drainage
    strokes were applied, together with progressive
    active and action assisted shoulder and arm exercises.
    Manual lymph drainage acted on the pain and inflexibility
    inherent to the vascular inflammation of the
    lymphatic vessel; also, if the axillary web syndrome
    did produce a lymphatic overload, and therefore a
    possible subclinical oedema, the action of the manual
    lymph drainage could help with reabsorption.32 34 59 60 63
    Further research on a possible relation between the
    axillary web syndrome and the development of secondary
    lymphoedema in women after breast cancer
    surgery is needed.
     

    Here's the abstract, and the full article is free on pubmed

    http://www.ncbi.nlm.nih.gov/pubmed/20068255

    full article:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2806631/?tool=pubmed

    So, AWS, because the lymphatic collectors are clotted off, can lead to LE, because those deep vessels aren't doing their job.

    And there are so few articles in the literature.

    In this one, if I do the math, these women with AWS had to be primarily in the control arm--but they did get MLD and what sounds like PT to me, and still got LE.

    That was my experience: tons of cords and bug bites right at the peak=LE

    And I've had a cord come back.

    Kira

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited November 2010

    I had cording after the level 1 ALND. More than a dozen cords, some of them running down into my forearm and ending at the thumb.

    PT did not do much for me. My boyfriend learned how to break the cords in the axilla, and doing that every evening and sometimes twice a day, made me get rid of them in a week. It's very painful when the cords are broken. They reappeared briefly 6 weeks later, after my reconstruction revision, and two sessions of breaking them made them disappear again.

  • kira66715
    kira66715 Member Posts: 4,681
    edited November 2010

    Jodi Winicour from Klose Training is very leary of breaking the cords: she's had 2 women develop lymphedema after that--her concern is that the clotted off lymph vessels may re-open and she doesn't want to cause lymphedema or break a vessel that is trying to heal.

    If a cord breaks, while being carefully manipulated by a PT, it's usually ok--

    Jodi is a national expert on AWS--and she advises not to try and break them.

    Just FYI

    Kira

  • brazos58
    brazos58 Member Posts: 261
    edited August 2013

    Kira, Binney...

    I just wrote a letter to the Nurse Oncologist Educator at the Hospital where I had my surgery.

     And as an RN, I just felt there was a total LACK OF PATIENT/ MD AWARENESS and TEACHING/ Prevention/ Management/ Follow-up/ Available Resouces

    and the whole Fact that the Existance of LE/ AWS/ Cording is a MOOT point for all of us having any procedure at any time in. AND This is a PARAMOUNT ISSUE.

    I am trying to get the link into my email. What one would be best?

    Am on the band wagon.

    :)

  • kira66715
    kira66715 Member Posts: 4,681
    edited November 2010

    Brazos, maybe link to our stepup page, and you can also quote the BMJ study--it should be on our page soon, but I just asked our amazing webmaster to put it in, and she's over-loaded

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

    There are a lot of links on the page, including one to entire article from a great German PT: Elisabeth Josenhans.

    And feel free to use the BMJ link: (British Medical Journal)

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2806631/?tool=pubmed

    The paragraph about AWS is in the article, not the abstract.

    We've heard from PT's around the world, and in Malta, they consider AWS to occur 100% of the time. 

    I agree: education is the key, and lack of post op education is rampant --my breast surgeon refused to give it, because it could "scare" women. I'd rather be scared than have LE--and when I got AWS, I came home and googled "cord in axilla after surgery, to figure out what it was.... The head of the LE clinic at the hospital had never heard of it...

    Kira

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