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Anyone else suffering from cording? (Axillary web syndrome)

21 REPLIES 21
jgaff
Member

Re: Anyone else suffering from cording? (Axillary web syndrome)

Hi Everyone,

 

Where do you get the DVD to follow for cording?  The link that was posted does not work now.  

 

 

Guest user
Not applicable

Re: Anyone else suffering from cording? (Axillary web syndrome)

Yes you can definately see and feel it. Funnily enough I described it as a cord before I knew what it was.
I am still doing what I can at home, althogh not brave enough yet to try hanging form my hands to snap it but the time may come!
Thanks for all your suggestions peeps. I have my 1st Physio on Thursday (my birthday) and hoping she will explain how to do the massage.

CheshireCheese
Member

Re: Anyone else suffering from cording? (Axillary web syndrome)

Yes you can both see and feel a hard ridge or cord(s) in the armpit, which may spread as far down the arm as the hand if it gets really bad. If you Google Images for Axillary Web Syndrome you will see what's meant. If you're concerned a physio is likely to be more help than a BCN, although she may be able to get you an appointment with a physio if you ask.
Sarah x

Minimunchkins
Member

Re: Anyone else suffering from cording? (Axillary web syndrome)

Peeps,

I'd be grateful if you could clarify for me - can you actually see &/or feel something like a line/cord in the arm?

I'm 12 days post-op (WLE & SNB)& think I've had really good mobility traight after op - just been a bit ginger about big or sudden movements (just in case). However, approx 4-5 days ago I noticed while stretching up (partic to 11 or 12 o'clock position), I had the sort of ache/pull twixt armpit & elbow that you get the day after exercising for the first time in years. I can't feel a line or anything - it's more of a deep ache or muscle burn. I had 10 day post-op check on Friday and metioned it to BCN - she didn't ask too much about it just said "it must be cording".

Your personal experiences would be helpful please.

Thanks - Chris

CheshireCheese
Member

Re: Anyone else suffering from cording? (Axillary web syndrome)

I've now added small hand weights (500g per hand) to the exercises and that seems to help stretch things a bit more (as per the BCC DVD and leaflet). Also find something to stretch up and lean your hands against and then push forward so that your arms are stretched behind your shoulders, not just level with them. Leaning up against a door frame will do the trick.
Sarah x

xwelcomex
Member

Re: Anyone else suffering from cording? (Axillary web syndrome)

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Guest user
Not applicable

Re: Anyone else suffering from cording? (Axillary web syndrome)

Hi Lulu
Herbalist at the Haven has given me marigold oil with lemon oil for cording. Only been using it for 3 days so not sure if it's working yet but it's worth a try.
Cherish yourself
Chinook

Lulu34
Member

Re: Anyone else suffering from cording? (Axillary web syndrome)

i have had cording off and on in both arms, armpits and boobs... and also in right hand and middle finger... since surgery to right side 5 years ago and left side 2 years ago.

iv had physio and kinesia (sp) tape and used brufen gel when its particularly bad but it just seems to get better of its own accord, however if i have some trauma or do too much or strain then it comes back again.

ine goes from my scar in my boob to my middle finger in the right and from my scar in my boob through to inside of my wrist on the left.

physio suggested trying to stretch it but that never made much difference or maybe was trying to stretch it one handed was the problem however i found the brufen gel quite good at easing the discomfort.

Lulu x

CheshireCheese
Member

Re: Anyone else suffering from cording? (Axillary web syndrome)

Similar experience here too, I'd exercised madly after the surgery, had full mobility, no cording, so got too cocky and relaxed back on the exercises. Bingo - I started with cording! Only after several days hard and frequent exercise it started to disappear - lesson learnt.
I've only just returned to work so got a few comments when they saw me sitting at my desk doing an impression of a windmill, but once I explained they were sympathetic.

moorcow
Member

Re: Anyone else suffering from cording? (Axillary web syndrome)

HI there - I'm really interested in Marian's comment cos I had done lots of exercises (op was last Feb) and my cording was getting better - so of course being lazy old me I stopped the exercises and boy did the cords come back with a vengance - really annoying - how many more things so we have to live with for ever and pay attention to...
anyway just have to do it I guess,
good luck with all the exercises everyone, Nicola

Guest user
Not applicable

Re: Anyone else suffering from cording? (Axillary web syndrome)

hi
I had cording after my mx in Sept 09. My BCN said it was important to do the exercises every day for the rest of our lives as cording can appear at any time.

When I got the cording I was told to raise my arm as high as i could to massage aqueous cream into the arm pit and then massage the cord gently along the length of the cording. The other exerices if to reach up and rest your fingers on the top of a cupboard etc (do NOT put any weight on it though) and gently twist your body towards that arm. You will feel the stretch and it did feel a lot better after I had done that for a couple of days.

Cording is very painful, but does go you will need to keepgoing with the exercises and massage.

Marian

Guest user
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Re: Anyone else suffering from cording? (Axillary web syndrome)

Oh, Clumsymoo - MX and residual knee prob, poor you. Forgot to say (Tamoxifen brain) that fairly early on in the OH massage regime, he said: S..., something's popped! Wotever, didn't do any harm. One other thing, I noticed I've got into the habit of standing with my L arm bent - so altho' I can do the cat licking its a... stretch,I need to be on the watch for that and have told friends and family to tell me when it's happening, Barbara

Guest user
Not applicable

Re: Anyone else suffering from cording? (Axillary web syndrome)

Thank you girls,
I am not alone then.....

Thanks Cheshire Cheese and Facilitator Jo, I have just ordered my copy.
Jane72 that does indeed sound drastic. eeeek
Alto thanks, I will persevere with my excecises, my OH says doing the ironing should be a good start. Cheekyb*****!

I am just so sick and tired of being in pain. I had a MPFL ligament reconstrruction on my knee back in May 2010 and was still having painful weekly physio (to get my knee to bend past 130 degrees) for this up until I found my lump end of Oct. That got abandoned and has now taken a step backward. I am about to start back on Wed with my knee which I know is going to be agony and now my arm.
I am will be 41 in 10 days and I feel more like 81 somedays.
I just want to get back to work. I am a Nursery Nurse at a Primary School and It is quite physical, I need to be fit. I get full pay for 6 months but had 3 months off for my knee recovery and now the MX. I only have 7 weeks full pay left.
Enough moaning though. I have had a successful MX and no chemo or Rads, just Tamoxifen so I must count my lucky stars and just break through the pain.
Thanks again girlies
Emma

Alto
Member

Re: Anyone else suffering from cording? (Axillary web syndrome)

I really sympathise with you - it's horrible to feel so restricted and in pain.

I felt mine within hours of my operation on Christmas Eve. It was very visible across my armpit and I could feel it right down to my hand.

My physio started to massage it last week which was tremendously painful at first (especially in the armpit) and showed me how to do it myself, and I do it with olive oil every morning before my shower. It made a big difference straight away and now is a lot better, even in just a week.

The thing that's made an even bigger difference is doing the exercises on the BCC DVD. Mine arrived on Saturday (took a while to arrive but was free, so no complaints!) and in two days of following it my cording has got a massive amount better and is much less visible.

Persevere and it you will sort it out!

Jane xxx

Guest user
Not applicable

Re: Anyone else suffering from cording? (Axillary web syndrome)

Hi there

I had cording for months after surgery and it was playing havoc with the nerves under my arm, as well as restricting movement.

It was only drastic action - hanging from my arms - that broke the cords and freed me up again. My onc offers to snap cords with his fingers so I don't think there's any harm in breaking them suddenly. I think it's a lot quicker than massage, stretching, breaking down slowly etc.

Hope you get rid of them soon, it's such a huge relief once they've gone. xxx

akfilm
Member

Re: Anyone else suffering from cording? (Axillary web syndrome)

I had it after my mx last year - physio was very useful so do push to get seen as soon as possible. Your BCN should have given you a leaflet about it with a range of post-op exercises to do. They do help if you keep doing them several times a day - lying down with your arm raised above your head, 'towel-drying' your upper back movements. Also quite hard massaging of the gummed-up areas. It took a couple of months to start easing up but it does get better. Hope it eases up soon for you.
X

Jo_BCC
Member

Re: Anyone else suffering from cording? (Axillary web syndrome)

Hi clumsymoo,

Here's the link to order the exercise DVD which I hope you find helpful.

http://www.breastcancercare.org.uk/search-results/*/changeTemplate/PublicationDisplay/publicationId/...

For more information the helpline team are also here for you.

Hope this helps. Take care,
Jo, Facilitator

CheshireCheese
Member

Re: Anyone else suffering from cording? (Axillary web syndrome)

Forgot to say, I'm doing lots of Pilates exercises to keep on top of this, which involves lots of gradual stretching type exercises.

elaine_r
Member

Re: Anyone else suffering from cording? (Axillary web syndrome)

Oh dear oh dear another lady has to put up with chords i had mine my for ages after surgery keep your arm moving as much as you can i used to swing mine backwards and forwards with a bottle of water in my hand keep raising it above your head till you feel it pulling it will go just keep up the excercise hope this helps

Guest user
Not applicable

Re: Anyone else suffering from cording? (Axillary web syndrome)

Well, hello......no one seems to know much about cording except Mrs Nasty my surgeon who Dx it. I searched and asked a cousin who's a nurse in Oz who researched but...... It seems to be a prob with the lymphatic system. I had Mx and SNB 1st Oct and then developed infection and then cording, but Mrs N didn't jump at manual lymphatic drainage which I immediately asked about. When I got fed-up with battling the London NHS, I decamped to Suffolk where I was able to self-refer for physio. This helped a lot and home massage several times a day: massage cords in lower arm and under arm and keep on with b..... exercises. My OH says he's never had such intimate knowledge of my armpits before!

Send me a PM if you want, Barbara

CheshireCheese
Member

Re: Anyone else suffering from cording? (Axillary web syndrome)

Hi clumsymoo
Seems to be one of those things with insufficient info available. I suffered a bit with this and did some digging around for info. The cording seems to be due to hardening of the lymph vessels after the surgery. Exercise and massage are the fix, however painful that process might be. You need to start the exercises as soon as poss, before it gets worse. The BCC people do a very helpful DVD and exercise leaflet, get hold of those (available through this website, but I can't remember where - moderator help!) and start on them straight away.
You need to stretch those cords really hard. At its worst I was doing the exercises 5 or 6 times a day and vigorously, until one day I felt it had all suddenly freed off. Since then I only have to do "maintenance" level exercises, a couple of times per day.
Sarah x

Guest user
Not applicable

Anyone else suffering from cording? (Axillary web syndrome)

Hi,
I am 6 weeks post op MX.
I have developed cording in my arm which is quite painful and there doesn't seem to be a lot of information on it.
My BC Nurse is reffering me for Physio, but I wondered if anyone else was having this problem and had any tips or advice?