Cording

Hi Mich,

   I had the exact same thing post LND in Nov.  I had pain down to almost my wrist when extending my arm.  I have been seeing a PT that specializes in lymphedema as well (a total of six times) and it  is definitely  worth looking into.  She is able to stretch my arm farther than I would have ever done on my own.   Which is painful at times, but, I can now lift my arm straight over my head with minimal pulling. Doing exercises at home also helps but if your in that much discomfort...push for a referral.  I don't think you should have to be taking pain meds.

  I'm in Winnipeg and it did not cost anything extra for the treatment.

  Trust your instincts and good luck with your recovery,

Diane.

oops, don't know what happened there.

Diane

Wow - I'm so glad I found this thread. I have one cord in my arm pit where I had a SNB. I thought it was a tendon! It hurt so bad at first - my doctor (who was an on-call doc that day) didn't know what it was, drained the swelling and recommended moist heat and stretching. It is still there but not as bad. This is very informative - once again, you ladies are a life saver!!!

Cyndi, I figured out I had axillary web by googling "cording in axilla after SNB"--my surgeon acted like it was nothing.At the worst part of it, I had a big seroma in my axilla and many cords, and in that compromised state, some bug bites triggered my lymphedema.

Although your doctor didn't know what to do--he or she did the right thing to drain the seroma as the seroma is a risk for lymphedema and the trauma of it can drive the cording.

Most cords get better on their own, but can definitely linger.

Way back in the thread is a link to the article on stepupspeakout.

Also, I like the stretches that Betty wrote about on the balance ball.

Kira

Chinablue, the acute phase of cording tends to resolve--the pain and tethering, but the cords do linger--like piano wires. I still have subtle remnants, and when one came back, I went to a PT/LMT and she worked them, and they finally resolved.

I stretch daily--twice a day if possible, and do the skin lifting axilla stretch described in the Burt and White lymphedema book.

Jodi Winicour at Klose Training is a national expert in cording, and her advice is not to deliberately try and snap them--she's seen a couple cases of lymphedema result, but to gently work them with stretching. A PT who can use two hands on it is better at it. Many PT's don't know about cording, and we've sent great videos to those who write in to stepupspeakout.

Kira

I think this is a new program offered Mich.  Not available when I had surgery in 06.  I am SO hoping it helps you.  I'm sure it will.  Can you let me know?  I'm VERY interested to hear feedback.

I'm really glad you asked.

Edit to add.......just read your bio/path......NO NODES!!!!  Great news.

It amazes me how informative you ladies are - thank you so much! My cording has gotten better, but based on some of your comments I will definitely try to find PT - I didn't think it would be necessary but based on your comments I am not going to wait to find out. I've been a little concerned about my upcoming mastectomy and the potential problems of the SNB being on that side. I'm going to look for the exercises Kira mention Betty wrote. My armpit is so irritated - not just the cord, but also the skin - it's weird. It's hypersensitive and I cannot tolerate the feeling like the skin is sticking to itself. I have to constantly put powder on the area. There are so many *fun* surprises on this journey! Yea!

Hi all

Kira thanks for the info. Just wondering do you have a reference for the 'Burt and WHite' book on lymphodema you mentioned. I am in Australia but Amazon is great!

China - cording (from what I can gather) doesn't necessarily go away. Definitely worth perservering with a PT and stretching etc.

Cyndi the sensations you described under your arm sound very like what I experienced after my mastectomy and full axillary clearance. I know you have just had the SNB to this point however I think it may have something to do with the nerve damage that can result from surgery under the armpit? The good news is that it does get better! I used to feel like I had extreme sunburn and everything that touched it hurt, even the softest shirt material. It is now nearly 4 months on and that has completely gone. I hope yours does soon.

Anyone have experience with cording and radiation?  Does it make it worse?

Concernedsis,

  I work in rad onc, and the head rad onc is very cautious about lymphedema--it's on the consent form for radiation, and he expressly tells patients not to exercise while in the midst of rads as he feels the treatment brings more blood flow to the quadrant, and lymphedema is caused when the system is overloaded.

  Especially if she's in the midst of blistering, her skin is red, inflammed--go easy right now.

  I wouldn't worry about loss of range of motion, I'd worry more about bringing excess blood flow to an arm and chest that is working at full capacity.

  There is loads of time to work on the tightness after she heals from the acute side effects of radiation: I find, about 17 months out, that I'm still tight, and have to stretch daily.

As you know, there are the acute radiation effects, and then the later ones, and you want to avoid fibrosis. There is a current clinical study using trental and 400IU of vitamin E to prevent radiation fibrosis--it was shown ineffective once fibrosis has already occurred. One of the women on this board has the good fortune to see Andrea Cheville at Mayo for her lymphedema, and she has gotten excellent results with trental (off label, of course.)

This is your sister's time to heal. Consider some vitamin E for the next few months, once rads is over, and the stretching exercises can resume when her skin is healed.

Here's the link to the clinical trial: no longer recruiting participants, but an interesting concept.

http://clinicaltrials.gov/ct2/show/NCT00583700

You are a wonderful sister.

Kira 

OMG! I am so thrilled I found this info on cording. I had  bilateral mastectomys Nov 6th 09.Within 2 weeks I got the exact same symptoms you all discribe in my left armpit,the cord extended to the elbow and it was so hard to reach out at all.I went to the Dr and since I had developed a DVT(deep vein clot) at my IV site he sent me for an ultrasound thinking it was a clot. I was told that it was a pulled tendon and to use moist heat.The left armpit cord is just not getting better and not so sore after 2 months but I now have the same thing in the right armpit extending down towards my chest area beside the tissue expander. I was told this time that lymphnodes were clogged and not draining properly after another ultrasound.They saw a fluid pocket during the ultrasound and I had developed a red hot area and they treated me for a lymphnode infection. I just finished the anitibotics yesterday,which did help the pain and redness BUT the cording remains in the armpit and down the chest area,some days very tender,other days not so tender. I am so happy I found the info on this so now I can start some stretching to hopefully help speed this along.My PS told me when I first showed him it was a thrombosis.said to use heat,heat does help.I feel so much better now just knowing I am not the only one who has this happen to them.

Dee

Concernedsis--no vitamin E while on treatment, but afterwards, it might be useful in preventing fibrosis. The studies pair it with trental. The results are pending.

My lymphedema is in my dominant hand, and that's why I was so worried about getting it--I'm so left handed, it's like my right side didn't exist before.

There was a good editorial in the magazine "Cure" about how much knowledge do you need to know--written by a health educator, who found that information overload was possible.

I work in medicine also, but every thing I learned about lymphedema I learned on these boards.

Dee--some studies say that most women get cording. There can be a venous component as well as a thrombosed lymphatic component. Some gentle heat can help before you stretch. Here's the link to the article on the web site. Feel better!

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

Kira 

Jane Kepics--great PT in PA, recommends stretches with the wrist flexed to put pressure on the cords. It moves them when you flex/relax, with the arm abducted (away from the side.)

Thanks for the stretch tips--I want to collect them all and put them on the web site.

Second shift--you nailed it!

Kira

Hi Ladies!

I posted here earlier but I'm back again to check in.

I had cording in my left armpit - from underarm to elbow with pronounced cord showing under my arm -  3 weeks after SNB and mastectomy.  I did the exercises the surgeon suggested and saw a PT to help losen it up. 

Withing a couple of weeks I regained full mobility and the cord under my arm disappeared.

In December I was hauling out the Christmas stuff and it's come back - I know I shouldn't have but I was feeling "normal".

This time it's farther down - from elbow to wrist - and no visible cord like the last time but it's the same pain and restriction in mobility.

I've been stretching it out gently but it's not getting any better and so I'm going back to the PT to try and find some different exercises to try.

It's so frustrating always having to be careful not to lift or in my case push around too much!

I guess I'll just have to resign myself to always needing help with stuff....

Anita, we need to get the stretches in one place

Here are some: lay on your back, arms over head, twist your body away from the affected side. Hold until more comfortable. Repeat with arms linked at back of neck--elbows out, and press elbows down.

Child's pose, the yoga pose, with arms outstretched over head. Sink back onto your thighs to increase the stretch.

Arms over head, grasp wrist with one hand and lean to that side. Hold at point of stiffness. Repeat on other side.

Stand at wall, put both hands up, palms facing the wall. Hold.

The skin lifting stretch from Burt and White is to lay on your back, supported by pillows, hold arm out to the side, supported, place hand in axilla and gently stretch the skin down as toward the opposite hip. They say to hold for 90 seconds while deep breathing.

BettyE wrote some great ones with the balance ball, I'll try and paste them here. I have photos from a PT, but I need her permission before I put them on the website.

These are great 

Kira