Axillary web syndrome - (cording) -- anyone experience this?

Linda-Ranching-in-the-mTns

I just read about this in another thread, and think it may be what I am experiencing.

My dbl mastectomy was Nov 6. Eleven nodes were removed from left side (plus 2 previously removed during earlier lumpectomy).

I still have pain in my left arm, from wrist to inner elbow (on the upper side of the lower arm if that makes sense -- the thumb side of the arm), and another 'clump' of pain in the soft under/back side of elbow. Nothing feels hard in my arm -- the 'clump' is a feeling-- but I am on the heavier side, so perhaps that is why I can't see any cords. The pain is in a definite line -- I originally thought perhaps a blood clot... and that this might be bloodstream related, but when I described the symptoms to the nurse (via email) she pretty much ruled out blood clot, as nothing is hard and no heat. 

But she never mentioned axillary web syndrome -- and led me to belive that muscles/nerves/lymph system are just readusting post surgery, and all will be fine...

I live 12 hours from my surgeon, 3.5 hours from oncologist, who I also mentioned the pain to last week, in her office, but she just said it was normal to experience random arm pain post-surgery, and it would get better on its own.

Wall-walking and table-walking with that arm are painful once I get past a point. 

I am 26 days post surgery -- and far from any LE therapists.

Feedback?

Does what I am describing sound like axillary web syndrome?

Thanks

Linda 

comingtoterms

Hi, Linda,

The pain you are experiencing, although I can't concur on the medical term, is exactly what I continue to experience 4 years out. I was told that if the main nerve was cut during your surgery, there is a chance that full feeling may not ever return to the arm. I had 27 nodes removed. I have no feeling in certain areas of of my upper arm, including my underarm. I have what has been referred to as 'tendonitis' in my elbow (which I never had pre-surgery). I have 'phantom' breast swelling and tenderness before my period, as I do on the 'real' side. (That's really weird!) I highly recommend seeing a PT to help you with your range of motion. They have a slew of exercises that are very useful. To say that my arm returned to normal has not been my experience. When I think about it, it almost seems an impossible notion considering the number of nodes removed! But it's a small inconvenience when compared to the alternative! Keep exercising! That helps! Best of luck to you, Linda. Namaste..

Binney4

Linda, here's information about cording (Axillary Web Syndrome). You can't always feel or see the cords, but they do restrict movement, especially stretching the arm out. Definitely something to consider.
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

Please stay in touch and let us know what you discover.
Be well!
Binney

fredntan

Sounds like the cording I had. I have had cording twice. One on the side that had nodes removed. It was related to the taxol. The other episode was onmy arm that has its lymph nodes. That happened after bp s and a blood draw all in same day to that arm.





Both times it finally went away. I wore a compression sleeve

Linda-Ranching-in-the-mTns

Thanks for the input...



I finally saw a physical therapist, and in only one session she did an amazing amount of good for me... increased my comfortable reach by 6 inches!



She assured me that the cording involves tendons and muscles damaged during the node removal.... not the actual lymph system. (Somehow that seems less scary to me)



She said she sees no signs of LE... but that I will now forever be at a greatly increased risk for LE and therefore she reccommends ZERO more surgery to my left arm or the left side of my torso...



Something to consider. I curently have two more surgeries planned to complete the DIEP...

Binney4

Linda, yuck! What a crummy dilemma! LE sure doesn't make the decision-making easy. I hope some of the women who have had successful DIEP experiences will be along to encourage you. Keep us posted!
Binney

Linda-Ranching-in-the-mTns

Just another update -- the increased reach is maintained! (with very little follow-up on my part)

I am extremely pleased with what only ONE physical therapy session accomplished! I must admit that with the holidays (traveling 12 hrs each way to visit my 83-yr-old-BC-survivor Mom) and the resulting uncommon flurry of activity (and heavy foods - ugh!) -- I have been remiss in doing my homework exercises -- but I am sure looking forward to the next round of PT (even though it was quite uncomfortable that night after she worked on me).

In fact -- since I must drive 3.5 hours to visit my physical therapist, I was smart enough to realize I might not want to drive 3.5 hours home again after the visit -- and spent the night in a hotel. SO VERY GLAD I DID! I was surprisingly exhausted after the PT. From now on, the overnight will be a regular part of my PT -- unless I am lucky enough to have a driver. 

To anyone reading this -- the earlier you seek help for cording the more likely your success with PT will be... and one extremely important thing she stressed is that you should NOT attempt your own massage until you have been trained to do it properly. (You can actually cause LE/damage by forcing the lymph fluid the wrong direction or into a blind alley). The depth of massage is extremely light -- not like you would massage (for instance) a sore muscle in your back or leg. Much of the LE massage only feels 'skin-deep' and is about encouraging the lymph fluid to move in new pathways since your old pathways may have been damaged due to node removal. 

Best of luck to all -- and a Happy New Year!

Linda

carol57

Linda, great news on your treatment gains! And thank you for the cautionary note. It is SO worth saying!

Bryona

Linda, thanks for sharing your experience. You once again remind me of how grateful I am to have found this place!

I'm pretty sure I'm developing axillary web syndrome (I must be on an accelarated program, since my lumpectomy and SNB were only two weeks ago--lucky me!), and I'm waiting to hear back from the cancer rehab PTs at my hospital. I've been so tempted to try to massage to loosen things up, but I'll take your advice and leave it for the experts. Hopefully, they can get me in next week. (Stupid cancer and SEs won't take holidays off...)

Thanks again!

Linda-Ranching-in-the-mTns

Great! I wasn't able to get into PT until 5 weeks post-surgery -- so you are way ahead of me! Just like everything else in this BC journey, I am sure that each case is very different from the next -- but if you have even half the success I have had (after only ONE treatment!) then I am sure you will be pleased.

I think that many of us here tend to post about our concerns and forget to post our successes!

For instance -- I have been prescribed Femara/Letrozole -- and came here to research potential side effects. Man -- did I get depressed -- because 99% of the posters had some very serious reactions. Then it hit me... my oncologist said she liked Femara/Letrozole because it had many LESS side effects than Tamoxofin (for example) -- and she only had had ONE patient whose se's were bad enough to remove her from the drug. 

Hmmmm -- how could the info I got here be so variant from what my oncologist's experience was?

Suddenly it came to me -- it is the people with SE issues who post -- looking for support and answers. Those (perhaps even the vast majority) without side effects don't think to post because there is nothing to post about! 

I have only been on Femara for 5 weeks -- but so far -- no SE at all!  I promised myself that at 2 months I will remember to start a post on the Femara thread -- "Two months on and no side effects!" so that when the next 'me' comes on here they can actually find a positive thread about that med.

Anyway -- come back and tell us how it went after your PT!

Best of luck!

Linda

Binney4

Bryona, it's great that you're already working on getting an appointment for therapy, and you DO want to avoid any massage because that could possibly cause further issues. But it really is fine to do some gentle stretching, especially helpful if you do it in a warm shower--just move your hand gently up the wall.

Keep us posted and let us know how you're doing, please!
Gentle hugs,
Binney

Binney4

Linda, thank you for taking the time to post GOOD news! That's really generous, but so easy to neglect. It's much appreciated!
Binney

SherylB

Hi all, As stated repeatedly we should always consult our doctor before undertaking anything!! I am going to repost what my surgeon told me to do and it is helping.

Hi all,

Had my surgery 12/6 and the swelling and cording started about 8-10 days out. Saw my surgeon 12/27 again and here is what he said. Use heat, massage, massage, and massage, especially the breast and the cording. Since it is so tender that is a challenge. Be careful of the heat as this is very fragile skin/tissue. The exercises he told me to do are to face the wall and finger walk up until stretched as high as you can x10, turn sideway to wall and same thing x10, bend over and with affected arm/arms swing arm around as if churning in a large cauldron, do this clockwise and counter clockwise x 10 each direction. Do these 40 motions twice a day. If your shower is big enough that is a great place for the first set of the day especially since you can have the warm water running over you and losening things up. For second set of the day I apply the warm heat and then do the exercises. All through the day just massage your breast and under your arm. I also have cording running from under my breast down the left side of my trunk. Yeah it exists too, called Mondor's cording. My husband actually asked me if I was looking for things to be wrong (he is warm and fuzzy NOT). Crazy question since none of us want this crap. Anyway, I am lucky I can get my arm all the way up and have full range of motion just uncomfortable, especially the swollen breast and seroma. Had my port placed yesterday and my breast 3 weeks post op is more uncomfortable.

Despite all of that today I am in good spirits and thankful to be where I am.

Hang tough all,

Sheryl

Linda-Ranching-in-the-mTns

Sheryl - Wow -- Nope -- I had never heard of cording in the trunk. I guess that cording at all must be relatively uncommon, as there seems to be little about it on the web.

My doc prescribed some of the same things... but always worth stressing (exactly as Sheryl mentions): Each doc will have different instructions, based on the type of surgery and specifics of your condition... so please don't try any new massage or exercises without consulting your own post-op instructions, your nurse or doc first. 

For instance -- Sheryl had a lumpectomy -- which obviously is less invasive than MX/BMX/recon... so her exercise/massage routine would probably be too advanced/agressive for only 2.5 weeks post op for those who had a longer hospital stay and more agressive surgery. I know my nurse specifically said to NOT perform the arm circles Sheryl describes. 

I had BMX with immediate recon -- and my docs stressed that I be VERY careful about raising my arms over my head -- and not at all for first 2 weeks-- in fact NO exercises (other than walking and hand opening/closing) for the first two weeks -- as the transplanted tissue and arteries got used to their new home. Also -- I was told NO massage of the breast or abdominal scar until all the scabs fell off naturally.

And -- just as a second cautionary note -- I will repeat that my PT stressed to NEVER massage the arm deeply at all -- that massaging the arm incorrectly can actually contribute to the development of lymphedema. But she did (as my doc did) advocate for the gentle arm stretching (the wall walk and the table walk) -- and if you see signs of cording, get yourself a PT appointment ASAP -- because they DO know the proper massage techniques and will train you -- plus they know where to massage more deeply (and when/how) -- which greatly improved my range of motion in only one visit. 

I took a telecourse yesterday about envisioning the best 2013 possible -- and made a list of positive statements (about gratitude) that I want to be able to make by the end of the year.

#1) I am so happy and grateful that I FEEL SO HEALTHY! I have achieved my goal weight and my daily hikes (and healthy meal plan) have really gotten me into the best shape of my entire adult life! I am thankful for the surgeries and hormone treatments which have helped restore my body to balance!

The list went on from there re relationships, travel, etc -- but BC has certainly brought my priorities into crystal-clear focus for this year!

There are all sorts of hidden blessings in this cancer journey -- and one of the largest opportunities I see so far is that I am forced to stop just 'talking-the-talk' -- If I want to stick around to enjoy this beautiful life -- I have to actually begin to walk-the-walk!

BC is forcing me to put HEALTH (and HAPPINESS) first!

Happy New Year to all!

Linda

kira66715

Just wanted to weigh in:

Linda is SO right--do not do anything that is not specifically recommended for your situation.

What Sheryl describes is not uncommon for a surgeon to recommend: "wall walking" etc, but the LE PT's who are expert in axillary web just cringe when they hear that.

Also, the webs are thrombosed lymphatics, with some veins--whoever was told they are "just" tendons, was mistaken. I have articles of the pathology.

Axillary web is VERY common, some studies will say over 50%, but severe and early axillary web is a strong predictor of progression to LE, despite early PT, as shown in a study in the  BMJ: Remember all these women were involved in PT with trained LE therapists, and the women with early axillary web went on to develop LE despite excellent care

They wrote: http://www.ncbi.nlm.nih.gov/pubmed/20068255 (It's a free full length article also)

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

Personally, I developed extensive axillary web 2-3 weeks out with an axillary seroma (also an independent risk for LE) and I sought out a PT who was trained in LE and she had me doing the repetitive arm motions that Sheryl describes, and I feel that compromised my lymphatic capacity even further. Additionally, I had been overhead stretching immediately post op, and Jodi Winicour PT and others strongly suggest that NO stretch be put on the axilla for a good 10-14 days, to allow the lymphatics to heal and to avoid seromas. When I got bug bites on the arm, three weeks out, despite having a LE PT (who in retrospect was completely wrong in her approach) my hand swelled, and nearly 5 years later, I treat my LE every day....

Please read the ENTIRE axillary web page on step up speak out: I wrote most of it, and the information is all verified by studies and confirmed by experts in the field

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

For three years I worked in a rad onc's office, doing all the initial evaluations of patients, seeing them on treatment and in follow up and I saw a TON of axillary web syndrome. We've had emails from Malta, where they believe that the prevelance is 100%.

As Jodi Winicour--possibly the national expert in AWS says--do not pop cords intentionally, as some lympatics will re-open up, do not lift your arms above shoulder height--with any axillary surgery--for 10-14 days post op

And the massage for axillary web can be done at home, but only after a well trained therapist teaches you how.

Axillary web that develops much later--and some women get it years out--is usually treated with overhead stretching.

But post-op axillary web and Mondors is stressing a lymphatic system that is already stressed, and should be treated with caution.

I work with a lot of breast surgeons, and the vast majority of them are clueless about LE and AWS. And my surgeon, when I showed up at my two week check with over a dozen webs and a huge seroma--asked ME what to do about the seroma (?) --I made the wrong decision not to drain it, and told me to walk the wall and swing my arm--dead wrong advice.

Maybe I always was going to get LE, but I sure wished my post op care had addressed my AWS and seroma in a correct way, to give me a fighting chance.

I would HATE to see women come on these boards and read Sheryl's surgeon's recommendations, and put themselves in harm's way.

Just like we don't share medications, we should only share evidence-based advice.

Full disclosure: I'm a CLT trained health care professional, and sit on a national LE board. And lecture nationally on these topics. I learned this information to make sense of my situation. I was working in health care for over 20 years, teaching at a major medical school and taking care of women with breast cancer, and knew nothing about LE until I got it.

Kira

 

Linda-Ranching-in-the-mTns

Kira -- Wow -- thanks so much for all the information. There was so little said by my docs/nurses re this potential SE -- and when I voiced my concern to my surgical nurse and later my oncologist -- they both sort of blew me off. It wasn't until I flat out told my oncologist that I WANTED PT (3 weeks after surgery) that I was taken seriously and an appointment was made... and I wasn't able to get in to see her for another 2 weeks.

One thing that my PT said is that she would reccommend NO MORE SURGERIES on my breast or that side of my trunk.. No pin pricks. No pressure cuffs. No mosquito bites (!) She stressed that I am at greatly increased risk of lymphedema due to the 13 node removal on left side, and the cording in my arm.

I had DIEP recon -- and was planning on having the stage two and three surgeries in 2013.

Stage two involves liposuction to the torso which is then added to the breasts, the construction of a 'nipple' , and touch-up surgery to decrease the severity of the abdominal scar.

Stage three is the tatooing of the nipple -- which camoflauges the scar where my original nipples were removed and replaced with belly skin (which is a different color and has a different texture).

After reading your post -- I wonder how much my plastic surgeons may know about AWS and the dangers of the second/third surgeries for someone who is experiencing cording...

And -- I wonder if the PT treatment I am getting is concurrent with what a DIEP patient should be administered.

Man -- I sure liked that naive view of the world that the docs knew what they were doing. 

So, who are the AWS experts, and where does one get the most up-to-date and well-considered advice?

Thanks again

Linda

carol57

Linda, I do not have cording and never did, and my LE is in my arm, and very, very minor on the side of my trunk just under the axilla.  I too had diep recon (bilateral). My LE had reared its ugly head prior to stage II of the recon process, and I was very worried about the effect the lipo would have on my LE.  I spent time reviewing posts in this forum to identify bc.org members who had diep and who have LE, and I PM'd eight or nine women to ask about any LE repercussions of the Stage II work.  No one had any worsening of their LE, and several said they thought it had improved. I asked an LE doc and a recon surgeon who works a lot with LE patients for their opinions.  Both felt that the lipo goes deeper than the superficial lymphatics, minimizing any added LE risk.  My diep results were good, but not fabulous, as is often the case--as you know, the reconstructed breasts are swollen as they complete their shaping work, and I believe that most of us need some revision work, and the fat grafting to fill divots, that comes with Stage II.  So I wanted the surgery, but I agonized over it because of my LE. Finally, I took the plunge, reassured by all the people I had spoken with, but still nervous.  And the result was:  no change to my LE!    I later had another minor revision to reshape one breast, and then nipples.  Still no change to my LE.  No guarantees for others, of course, but that's my experience and perhaps it will help lessen any worries as you think about what's ahead.

Carol

Linda-Ranching-in-the-mTns

Thanks SO much for your post, Carol  !

Certainly what I wanted to hear -- and I love how much you researched things first -- I will probably do the same -- but feel more hopeful after hearing your story!

Originally I thought I would skip the tattooing - (have never liked tattoos or needles!) -- but once it was explained to me that the tattooing actually serves a purpose, it made more sense and I was ready to go for the full plan.

But my PT's comments (and my fear of LE -- I fought with surgeons each time to take fewer nodes than they normally would) sent me into turmoil over stage 2 and 3. Your post is much appreciated. 

Would love to hear from more women who did both -- with or without LE-related complications. Think I will post the question over on the DIEP thread, too.

carol57

Linda, I have yet to get the tattoos, but I've decided I definitely want to get them. Of course, I'll be hyper diligent about care of the area to minimize any LE related cellulitis risks. So far, I have no sign of LE in the breasts, so I'm not obsessing about that possibility. We are all so individual in how we feel about reconstruction, but for me, it's very important.  LE really made me question that priority, hence all the research.  I'll be interested to see what others post in response to your question.

FeelingtheMagic

I developed mondor's syndrome a few weeks after MX. They were painful in a burning kind of way, then settled into some very predominant, but not painful, cords from armpit, behind chest wall, and right down my belly. At the time, I was told "oh that's rare, they will go away on their own."  And they did. When I had my implant exchange recently, I once again developed cords. (and had a rushed ultrasound because one area felt like a lump in the armpit. Results were fine.) This time the surgeon said, "you are massaging them regularly?"  Ummm... didn't know about that before. So I am gently massaging them. And trusting they are going to go away on their own again. Have no LE symptoms and have full range of motion.

So throwing in my two cents, because yes, it does seem we get a lot of different feedback from different doctors! After reading these posts, I am going to look up LE trained PT locally, and do some followup. It certainly can't hurt.

Ariom

Hi Feelingthemagic!

I too, developed Mondors soon after my Umx. I would describe the feeling exactly as you do, but would add that they would feel really tight if I stood up very straight, or leaned backwards. I even had one snap when I was turning in bed one night.

I was told it was rare too, and that they were nothing to be worried about, that they resolve themseves. Mine disappeared at about 8 weeks or so, but that was after constant massaging, several times a day. I also did a massage every day under the running water in the shower.

I have regular massages, by a remedial therapist, and she would massage these tight bands quite deeply. It hurt a bit, but it was a great relief when they disappeared.

I don't have any LE, and had a full range of motion very soon after surgery.

I did do some research, and found that this is actuallly quite common after breast augmentation surgery. It is also a bit of a strange thing because when tested these ords sometimes turn out to be lymph, and other times thet are a vein that is thrombotic or a phlebitis.

The reading I did, described it as something that can occur after any trauma to the breast. The kicker is, that it can reappear, as you've discovered. I haven't had any problems, yet, but at least I know how to deal with them if they do come back.

All the best!

FeelingtheMagic

Hi Ariom, during the first round of it, when I could find so little research, I decided my body was just simply amazing... finding it's own new way to drain the seroma that I had! Wasn't true, but fun to consider that. If I stretch back, it can be tight, but hasn't interfered with my paddleboarding or other activities. I'll use your tip for the shower massage, thanks. 

Linda-Ranching-in-the-mTns

Just an update -- I have continued the physical therapy for the last 8 months -- and am happy to report that all cording has dissapated... at least for now!

The other thing my PT concentrated on was all the scar tissue (I had DIEP, so both pectoral muscles and abdominal muscles were cut, as well as removal of 13 lymph nodes, each site with more scar tissue).

I was amazed how the separation of skin from underlying scar tissue allowed much freer movement! And, I am not sure that I ever could have done the intensity of massage required myself without the PT to seperate the two.

SO -- my suggestion to anyone experiencing arm/armpit/scar-related constriction or pain is to get yourself to a good physical therapist, ASAP. Mine was a lymph-edema specialist -- and I loved her approach to everything she did for me... In my opinion -- what we need is not PTs who only give exercise, but those who are confident in their field and apply hands-on massage and ultra-sound to over-stimulated nerves.

My armpit post surgery looked oddly concave -- and I felt a 'pulling' when reaching that was extremely uncomfortable -- this was scar tissue of the muscle attached to the overlaying skin. Once seperated -- my armpit now looks normal, and my arm works much better!

However -- after 8 months of PT -- I still had some limitiations to ROM (can't reach behind me) and so I was referred to a shoulder specialist. MRI and X-Rays show "severe arthritis" which is tearing shoulder tendons.

Was this caused in part by inactivity post surgery? Possibly. The theory is that because I had pain/cording/limited ROM in that shoulder, I naturally quit using it much, and during the time of inactivity, the arthritis began creating little bone spurs that (under normal circumstances/normal activity) would have normally been worn away before they got a chance to grow.

So -- looks like arthroscopic shoulder surgery is now in my near future.

I strongly suggest that any of you suffering cording issues get to a good PT - as soon as you can, but also be aware that arthritis can set in ... and keep moving as much as possible. 

Best of luck to all!

Linda

Binney4

Linda, goodness, what a long haul you've had with this! I'm so glad to hear how well you're doing, and I really appreciate your stopping back to tell us all you've learned. I know this will be a help to others coming along behind us.

Be well!
Binney