Axillary Web Syndrome (Cording) (2 Photos added; they are not graphic)

[Ginevra]

🤨 This has been my biggest obstacle for healing since surgery. My range of motion in the left arm has remained hampered, though it has gotten a little better, bit by bit. I have exercises to do but TBH, I often do different exercises and not the one my dr. Prescribed because the prescribed one is so dang difficult every morning. When I initially went for my follow-up visit, she said the inside of my elbow showed evidence of cording, and she gave me the “wall walk” exercise to do, three times per day. This part has gotten better and I frequently straighten my arm to stretch it and this is improving. 

But lifting my arm at the delt has not improved and today when I took off my shirt, I could see it is corded there, too. It’s plain as day. So no wonder it hurts and I can’t lift and straighten my arm simultaneously. I have also been using a heating pad to loosen up the inner elbow area, which helped me exercise it, but now I just read that heat can be a problem because it does (blah-blah-blah medical gobbeldegook) and that could make the cording worse. Awesome. 🤨

What can I do about this? Presumably, it will have to be Monday before I can get advice from my doctor. And I know this sounds whiny, but I am really hoping this won’t be a come-in-for-PT-every-day situation. 

P.S. When my doctor gave me the exercises, she did not communicate urgency. I got the feeling she thought this was no big deal and my range of motion should be fine within a week by doing the exercises. 

I might include a picture if I can get a discreet one. 

Edited November 24, 2018 by Quill

[sassenach]

Ditto. You need PT. 

[Guest]

Boo. I hate PT. 

[Pegasus]

Whether or not you seek the expert guidance of a PT (always a good idea, by the way), consistent daily stretching over the long term is the only real solution.  There is no quick/easy fix. I'm over two years out from surgery and I still get tight and limited if I neglect my stretching. You can find descriptions of good exercises in books and online. If you feel the stretch in your tissues, even if a little painful, that is fine. If you feel it in your joints, STOP. Hold your stretches where they are uncomfortable but tolerable for at least 20-30 seconds.  That's how long it takes your muscles to adjust and relax. Take deep breaths and try to stretch just a tad bit further. 

If you don't already have a good understanding of lymphedema, that's another topic to educate yourself on.  You don't want to trigger this condition or make it worse with things like heat on the affected limbs.  Using compression is highly recommended when exercising as well. 

[Annie G]

PT. Sorry, I know you dislike it, but a pt will be better at helping you fix this. And it might only take a couple of sessions. 

[Guest]

31 minutes ago, Fifiruth said:

Miranda Esmonde White who developed the Classical Stretch/Essentrics exercise program was treated for breast cancer. She developed a stetching program to regain full range of motion after having a mastectomy, and she offers it for free on the website. 

http://www.breastcancerrehabilitation.com/

Thank you for that. I appreciate it very much. I find it (oddly) very reassuring to hear her say, ”This will hurt at first; your arm will be screaming in pain.” Honestly, that is what I need to hear. I think it is seeing someone five years out from that eho nevertheless remembers that it hurts like the dickens but it won’t forever. 

I also think it is a very good idea to mark my progress in pencil on the wall. It is discouraging when I feel like I have regressed or I’m not really getting anywhere. 

[Andromeda]

It might be a little easier to do your stretches and arm exercises in the shower, or immediately after, while muscles are warm from hot water.

You can use the shower wall to stretch against, too.

[Annie G]

1 minute ago, RosemaryAndThyme said:

It might be a little easier to do your stretches and arm exercises in the shower, or immediately after, while muscles are warm from hot water.

You can use the shower wall to stretch against, too.

That’s a really good idea. When I was in pt for a shoulder issue, it was easier for me to try to extend my range when I was in the shower. But I take long, hot showers, and Quill might be too frugal for that.g

[Guest]

10 hours ago, Annie G said:

That’s a really good idea. When I was in pt for a shoulder issue, it was easier for me to try to extend my range when I was in the shower. But I take long, hot showers, and Quill might be too frugal for that.g

You’re not wrong, but it’s more due to DH’s frugality in the case of hot water. We have a wood-fired furnace for heat and hot water. Because the fire often dies in the middle of the night, hot water is not a certainty. Dh has been more compassionate about it since I had surgery; I can implore him to make sure I have hot water. But it is limited in any case. 

I do, however, do one set following a shower. 

[Guest]

I was able to talk with an old friend who is a PT. (He no longer lives where I live, unfortunatly, but he does have connections with “very excellent” PTs who are trained in this specific problem.) He agrees that this is very important to address now before scar tissue tightens up the cords beyond the ability to repair. 

[hornblower]

Hey  - I didn't have cording after surgery but I got it several weeks after rads. It's almost gone now. Cording is different than lymphedema  & much less serious so you don't need a lymphedema trained pt. A good registered massage therapist can handle it. 

Mine actually snapped when I leaned on a table to look over ds's school books (you know how you do, with your wrist turned out). It just went snap.... not really painful, just weird. The RMT is just cleaning up the last bits of tension from it now. 

[Guest]

2 hours ago, hornblower said:

Hey  - I didn't have cording after surgery but I got it several weeks after rads. It's almost gone now. Cording is different than lymphedema  & much less serious so you don't need a lymphedema trained pt. A good registered massage therapist can handle it. 

Mine actually snapped when I leaned on a table to look over ds's school books (you know how you do, with your wrist turned out). It just went snap.... not really painful, just weird. The RMT is just cleaning up the last bits of tension from it now. 

That sounds...terrifying. I still have the damn cording. I have been very diligent with my rehab exercises and a little yoga routine I do 2-3 times a day. My range of motion is pretty close to normal, but it still hurts considerably to extend my arm all the way out. 

I have an appointment with a PT on Thursday. This is the PT I was directed to by my surgeon’s office. I have not made an effort to get in with the PT my out-of-state friend recommended; I feel a little badly about this. I’m going to feel embarrassed when he follows up and asks me if I have been to see her yet. I don’t want to seem ungrateful for his recommendation, but I also feel like it’s too complicated to navigate. It’s just much easier to go to the person in my healthcare network and for whom I have a referral. (This might make no sense to you as it probably works differently in Canada.) Anyway, I’m trying not to worry about that and plan to just go to the first PT for whom I already have a referral. 

I really hope they can resolve the cording and get me straightened out. I go to consultation for radiation tomorrow and I want to resolve the cording before radiation or at least earlier on.