Axillary Web Syndrome - Cording Issues
Hello. My cording developed within a few weeks of my bilateral mastectomy, which included the removal of 28 lymph nodes in my left arm. I did not have PT until after my radiation treatments were over and my skin had healed. I have had 30 PT sessions, and am still experiencing severe cording. I have tried 3 different PT's, the last being just wonderful. But, still.... the cords remain.
I am wondering if anyone has any new information / links on how to get these things to go away. I have been in therapy since October 2013 for these cords, and yet they are obstinate!!
I do have very mild lymphodema, but it seems very stable and I have had no flare ups at all.
I do plan on a diep flap reconstruction in October 2014, cords or no cords. But they are miserable, and I'm looking for relief.
Any thoughts are most welcome. Thank you.
Laurie
Comments
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I had cording pop up right after my MX. My LE therapist was able to stretch and manipulate my arm and get the cords to "release" she didn't like it when I said "Oh, another one just popped!" I also started taking a Serrapeptase supplement that I think helped some.
We got it mostly resolved and then my first chemo set off another round of it. I have some LE issues since rads, but have not had any more cording problems. I too had a ton of nodes removed, 32 of them.
Good Luck! It was annoying.
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Laurie, I hope this link is of some help. http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm The Step Up Speak Out web site is a wealth of information.
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No one told me about cording and I didn't see anything about it til after surgery when a taut cord was visible down to my elbow. After reading the article listed previously, now I'm concerned about lymphedema. Dr. hasn't been concerned but I've been working with trainer to gain flexibility and some strength and cord still divides my arm pit in half but isn't visible by my elbow and pain has diminished when I raise my arm. Moving forward.
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I am just three weeks post mx no reconstruction and what nurse said was normal tight muscle may now be cording and referred me to PT. Is that normal that soon after surgery? I can barley move my arm and is very painful. How soon can I expect this to resolve? I haven't even started rads yet : If not resolved before rads will it increase lymphedema chances
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I hear everyone talking about their cords "popping", and I would just love to have that happen; I can imagine the release you must feel.
For those wondering about lymphedema; my radiation oncologist did tell me that rads did increase your change of getting lymphedema, but even though I had 28 nodes removed and a full load of radiation treatments, my lymphedema is very slight, and doesn't seem to be affected when I lift something heavy, nor does it seem to decrease when I wear a sleeve for a few days in a row. Not sure how closely the cording and the lymphedema are related, will need to do more reading.
Marple, thank you for that link, going to go take a look!!
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I developed cording between 2 and 3 weeks post-surgery. Like most everyone else, I had not been told it was a possibility and had to find out what it was by researching it myself (here and on the stepup-speakout site). MO just shrugged and said it will go away eventually. (Nope!) RO was also unconcerned. I finally got a referral to a LE specialist since I knew I was high risk. She insisted that the cording was caused by infection. I have not seen that theory anywhere else, but she is quite sure. Put me on antibiotics for 2 weeks and it did seem to help somewhat. The cords were not gone, but they were better. But then a couple weeks after rads, the tightness and cording came roaring back. :-( RO put me on some meds to help blood flow into the scarred areas and sent me to PT. Now, back when I had the consult with the LE specialist, about prevention tactics, one of the things she said was "never let anyone massage that arm!" (along with all the other standard warnings like no needles, no BP, no sunburn, etc.) But when I went to PT, the first thing they did was start massaging those cords. They said don't worry, we work on LE patients all the time, it's ok, etc.... But I should have trusted my gut and stood up for myself and stopped them when it was painful. She massaged the cords too hard and I woke up the next morning with truncal lymphedema. It is painful and it's something I'll have to live with for the rest of my life. Of course the docs and the PT gals all said oh no, that can't be LE, your arm isn't swollen, etc etc! It took 3 months to get a referral to the LE lady again! She said the same thing about the cords being caused by infection and put me on antibiotics again but this time it didn't help any. She was surprised... Then I saw a LE therapist who taught me MLD, compression, etc but none of that has really helped either. Meanwhile I was still going to PT every week for a few months. They taught me some good stretching exercises and it did help, very slowly. I now have almost as much range of motion as before, and the cording is much less than it was. Perhaps it will eventually disappear completely. But I've been living with it for almost a year and a half now, so don't believe them when they tell you it will just go away on its own in a short time! And don't let anyone massage it too hard!
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My therapist does massage the cords; and while it hurts a bit the next day, they feel much looser, and it really is more comfortable. She'll do about 10 minutes of MLD, then about 50 on the cords. My lymphedema is extremely slight though, and luckily so far nothing much has seemed to affect it at all, although if I did travel by plane I'd wear a sleeve.
The cold weather here in IL has really not helped at all, with either the cording or the scar tissue from my surgery, both which seem to like to "seize up" from cold weather.
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Hi there,
I too have had ongoing issues with cording. In August 2013 I had a bilateral mastectomy with 3 sentinel nodes removed on both sides. Despite not requiring radiation and taking things gently, within weeks I had seromas, then cording and persistent swelling that was helped a
bit by pt and mt started about 8 weeks after surgery. Seven months later, I continue to have
swelling under one arm and across my chest and cording that flares
up, that my pt says is likely caused by
truncal lymphaedema. So far, I haven’t
had a problem with lymphedema in either arms. I’ve had conflicting advice – one pt advised me to cut back at work
during flareups and another felt that resuming my pre-surgery exercise and work
schedule would help with the recovery. My surgeon hasn't been helpful or supportive. I’ve been doing MLD daily and exercising
(treadmill & adapted yoga to avoid some positions like downward dog) but
haven’t found a magic combination that works reliably. I have an extra slim build and haven't found a compression top that helps under my arm and across my torso. It’s frustrating that months after
surgery, burning, swelling and cording
can persist and yet browsing the forums, I remind myself that I've been lucky. -
I had double mx on feb 25th and have a huge cord in left armpit. It has a smaller buddy. Today at PT the therapist worked on it for about 20 minutes. She applied gentle massage to it and by the end of the 20 minutes, it was reduced to 1/2 it's size and I could raise my arm really high. I can relate to the popping sound. She told me not to be concerned- we want the cord to "break" and loosen. She told me that she noticed it last week at my initial appointment and had looked up some information on the internet for me to read at my second appointment.(We never addressed it during the first appointment) We were supposed to meet again two days ago, but unfortunately, the appointment was cancelled due to snow. I was miserable the last two days, wondering why I was hurting worse than after surgery. Just got home, looked in the mirror and I can't believe how different my armpit looks. It looks almost normal now. This morning, it had deep divots. I understand that it is important for everyone to follow their doctors' advice, but I am feeling so much better at the moment. Good luck everyone-
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I've had this cording issue for 18 months now. All the docs just shrug and say there's nothing to be done, it will go away on its own eventually. (Not happening yet!) I do the stretching exercises and that has improved my range of motion somewhat, but the cord still hurts when I stretch it. I would caution everyone to be VERY careful about allowing anyone to massage it! I stupidly let a PT massage mine, it was very painful, and the next morning I woke up with truncal LE. Which is also painful and is something I now have to live with for the rest of my life.
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I noticed cording 2 weeks back at just over 2 weeks after re-excision and SNB surgery. It feels tight and is noticeable when in certain positions. Asked my surgeon and she wasn't concerned said only that PT may help. Have some sensory nerve pain under my arm which feels like a tingle at times and causes me discomfort -- sort of topical not muscle but causes my skin to feel raw. Saw PCP for nerve issue and he said topical products won't help but he gave me referral to PT as he noticed limited mobility which he thought could be due to cording (but is certainly due to limited use since surgery). I've been exercising including walking, running, gentle yoga and my usual cross-country skiing going on flats and slowly not moving my upper body much). He said the nerve pain may last 6-9 month or more and that PT should help a little though nothing really helps nerve pain. I feel better after I exercise -- not sure if it takes my mind off the issues or if the endorphins help lift my mood -- both probably.
PT isn't LE specialist but I figured I'd try it. Don't have LE locally though could probably go into city to find one if necessary. After PT earlier this week noticed swelling beginning under the arm and thru pectoral. Not a lot of swelling but enough that the biopsy scar looks sunken in a divet. I'm trying to gently massage it so I don't make it worse. I've been using warm compresses. PT seems to have helped with the nerve pain but now I'm getting concerned with the swelling.
Wondering if I should see a LE specialist or just wait it out? Can you do damage with gentle massage if you don't know what you are doing?
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okay, i finally found out what cording you ladies were talking about. i had 35 nodes removed and as i can recall, my right arm was a little bit swollen because my fingers on right were fatter than the left. my sister told me to walk my fingers up the wall after surgery which was 2-3 days afterwards, i could walk my fingers up that leveled to my shoulder. and it improved as days go by. then i had the drains removed and the nurse told me to start the arm stretching exercise. it was difficult at first, because my arm was tight and i could feel a rope like thing from the arm pit to my elbow...that's cording right?? and i stretched everyday till my arm got 90% of the movement back and the cording disappeared...then i sort of stopped. still stretched my arm but not counting the minutes...and now i would say i got 99% of the movement back. i asked my MO, she said i'll never feel the same as pre surgery. i will always feel that tightness and i need to stretch everyday.
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Yes Juneping, that sounds like cording. It feels like a long rubber band, that you just wish would SNAP and be gone. I've had 30 sessions with a PT and still have the cords under my left arm. My PT took my hand and traced my fingers down my arm, so I could feel it. I had chemo, then surgery, then radiation. I started noticing the cording a couple of weeks after the surgery and that was last summer, so it's been quite a while so far. Going to get another prescription so I can go back to my PT, it felt much better when she was helping with the massaging and stretching. Also going to try some Yoga and hope that helps.
I will be having reconstruction this fall, and really would like this to be gone by then. And crossing my fingers I don't get any more from that surgery!!
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laurie - lol at the rubber band...i wish it's gone. love the analogy.
good luck with the reconstruction.
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Hi,
I just started a new post on this in the Lymphedema topics, but thought I would post it here as well....
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Hoping to find anyone who has either had surgery for Axillary Webbing/Cording, Lymph Node Transfer, or lymphaticovenular bypass with Dr. David W. Chang. If so, can you please give me a little feedback regarding your experience with him?
Dr. Chang was with MD Anderson-Houston, but recently went to work for University of Chicago. Link to his bio . . .
http://www.uchospitals.edu/news/2013/20131011-chang.html
I have had two surgeries for severe axillary webbing/cording with a fair amount of success with my current rock star microsurgeon, Dr. Kline, Charleston, who did a lymph node transfer 15 months ago-December 2012 (and no sign of LE returning so far!).
Dr. Kline has also been bit-by-bit repairing and recontructing me after I started elsewhere with failed direct implants, failed Alloderm slings, failed revision, severe radiation damage, LE, and severe axillary webbing/cording. Since my BC Dx in June 2011, I have had 10 surgeries to date. There are still two more surgeries left with Dr. Kline for reconstruction to be completed by July 2015.
Anyway, I am still hoping for one last try with surgery for this evil and painful axillary webbing/cording. I've come a long way, but just want to try to get rid of the pain and the strangling it is causing. Dr. Kline has worked on my cording in conjunction with other surgery recon. He says when he "cuts" the cord (which he does from where it originates by dissecting/picking apart and going down between muscle, veins, and other stuff), that my arm is released 100% on the operating table, and it 100% smooth and flat through my axilla. However, it later ends up re-adhering somehow. I think part of the problem is I can't rehabilitate it immediately as I have surgery drains in that area for the other recon work he was doing during same OR session.
Anyway, anyway, while Dr. K is a top microsurgeon and specializes only with breast cancer patients and free flap recon surgeries, he still had never seen cording as bad as mine that needed more help than the ~100+ sessions I've had with a PT/CLT who specializes in cancer patients only and highly knowledgeable about LE, cording, etc. He also said there is no medical literature out there on performing surgery on axillary cording. He has been very sympathetic and took my case to a conference to discuss with a few other surgeons (Sloan-Kettering), but he said they didn't really have any great ideas either. Dr. K said he would prefer not to try another attempt on it, and supports either of us finding another surgeon who has come across more BC-ALND patients who suffer from this.
I would like to try one last shot at it -- but have surgery on it ALONE. That way I am not swelling or having pain issues from recon work.
So---, I plan to give Dr. Chang's office a call, and possibly send some history and pictures, before I actually drive 3 hours for an appointment. Do not want to get there and have him simply say -- nope nothing can be done -- as that's all I've been hearing from the get-go. And of course, like may of you, I was never even warned that this crippling at times complication was going to happen. So tired of the MOs and ROs, not to mention the breast surgeons who actually perform the ALND, simply say either "it will go away" or "nothing can be done." IMO, There are just way too many axillary webbing/cording patients that are suffering, and a lot of time and money spent for treatment, to not have some sort of bonafide study and doctor education in place.
Looking forward to hearing from you all, and wish you the best, too!
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Should massage by a PT therapist for this be painful? I had a new PT therapist today who did this, I felt like I wanted to scream and jump through the ceiling. I am thinking this is not right if done correctly. Thoughts?
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That is NOT right! Trust your gut, and don't allow anyone to hurt you. This is the voice of experience. I didn't stop them when they did that very thing to me, and I woke up the next morning with lymphedema.
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Bayou, I think you mentioned once that you go to a lymphedema clinic, and if they have more than one therapist, can you ask for a different one next time? If you aren't worried about stepping on toes (I wouldn't be, but we're all different), call and ask to speak to this therapist's supervisor, and describe what you experienced, asking pointedly why it could be so different this time. Also double check therapist credentials--there should be a CLT designation, and ideally LANA certified. Hurt is definitely not part of manual lymphatic drainage. Too much pressure can shut down the superficial lymphatic pathways, so not only is pain not appropriate, pressure that can produce pain is downright counterproductive, to say the least. Not only do the pathways not allow lymph to move when they're crushed, pain itself draws additional lymph to the area.
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Thanks Carol. I definitely am not afraid of stepping on toes! Poor incompetent medical staff better get out of my way! I just have never had them work on breaking up cording or scarring. I was and am not at all sure how this part should feel in comparison to the manual lymph drainage.
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Bayou, the girl that has worked on my cording did use more pressure than is used for lymphatic drainage; and some of the spots were painful. I always felt better afterward though. They are very different issues with different forms of treatment. When I was being treated for lymphodema, which is very mild in my case, I always thought 'geez, I can barely feel this'... When she was working on the cords, there were some spots that were more painful then others, and when one would break, or release, it would 'zing' and that was a bit painful. Good luck Bayou.
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