1 year post surgery arm pain...advice?

ginabf

hello - i am new to the forum.  i was diagnosed last year with stage 3a cancer.  the tumor was 5.3 cm and 11 nodes were removed, sentinal node had cancer the rest were clear.  i had a lumpectomy followed by breast reduction surgery.  8 rounds of ACT, and 7 weeks of radiation ending in September.  i have been working with a physical therapist after surgery and a lymphedema specialist during radiation.  my issue is that the lymph strand (is that the right word???) keeps getting tight.  no one seems to be able to understand why this keeps happening.  they say (the PT and lymph specialist) that once the 'tighness' is worked out it should stay  that way.  i was feeling great and hardly noticed my arm being different that the other and now i seem to be back to square one where i have pain when putting on jackets and can't lift the arm over my head without feeling like something is tearing inside.  is this normal?  the surgeon wants to send me back to PT again, but would love to know what is going on inside first!  anybody with similar issues?  Swelling is not really an issue so I don't think it is lymphedema. I do get a bit of swelling every now and then, but the pain is more of an issue. this is my first post here. 

kira66715

Ginabf--what you describe sounds like cording, and it can persist and recur for years--cords are scarred down lymphatic vessels

Here is a link to describe it:

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

I had a lot of cords in the post op period, the pain went away, but cords remained, I did get PT, but they've come back a few times--dealing with one now.

With the fact that you do have swelling, you really should be seen by a qualified lymphedema therapist who can manage both the cording and the swelling

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

Just a little bit of swelling indicates early lymphedema, and now is the best time to address it, and cording is linked to lymphedema.

Yep, the pain is not pleasant--my cord showed up last week, and is reminding me that it's there when I reach for something...

Kira 

ginabf

kira - thank you so much!  i agree...i am going for my annual mamo, sono  and bone density today to mark my 1 year.  in two weeks i go for the MRI.. when i come home i will read the links you so kindly posted.  it is nice to know there is someone out there who feels like me ! 

Isabella4

ginabf.

I am eight and a half years out, had a double mastectomy (BMX) and had 26 nodes removed. I still have chronic pain and stiffness under my arm, and in my shoulder. I did PT but it didn't help at all. This seems to be a very common thing. Many of us are left in this state, and a lot of the medical staff you discuss it with try to brush it off, and tell you it will resolve. 

I agree with kira, sounds like cording to me, read her links, and you will maybe be able to relate what you're experiencing now. 

Welcome to these boards... a real wealth of information for you to delve into.

Isabella.

pat01

Hi gina - I have a similar pain, though it sounds like not as painful as yours.  It appeared shortly after my surgery in June.  Asked BS about it, she didn't think it was cording, and probably just scar tissue from SNB.  It continued into rads, so I asked RO about it, and he also didn't think it was cording, gave me some exercises to do.  My tightness is generally in my bicep - have no problem with the arm other than reaching far above my head (like watering a hanging plant, or getting something off the top shelf).  The last month or so I've slacked on the arm exercise, and realized the other day I am using my good arm for all the reaching!  Tried to use my bad arm, and it really hurt when I tried to stretch it.  So it's back to exercising - I noticed today that while it is still tight, I can reach a little higher than earlier in the week. 

Pat

alliesmom15

Mine just keeps getting tighter, I have been streching it on a daily basis but it hasnt gotten better yet.  I dont know what to do.  My GP said it was prbably tendinitis of my elbow.

Why do they blow you off like that?

sundermom

I'm quickly approaching one year post surgery and I have had constant pain in my arm. It's either the iron bra feeling, the tight arm pit or the being very sore with pain running in a straight line from my shoulder to my thumb. I have seen an LE therapist and she's not convinced it's LE, because I have never experienced any swelling when she takes measurements. She did mention cording and gave my some "nerve glides" to do when I'm experiencing a flare. I have an appointment on Tuesday so we will see what she says then. I recently had to have the implant on that side removed and the pain seems to be better. That doesn't really solve the problem since at some point I hope to have the implant put back in.

CLC

I had a umx with snb on October 7.  I am 3 weeks out.  I managed to get PT, though only through my own self-advocacy.  She is not LANA certified and does not do wrapping or other treatment of le, but has experience in past treating cording.  Yesterday, the pt discovered two tiny cords in my arm pit (about 1-2cm long and the thickness of thin spaghetti).  She is doing massage that pulls either end of the cord to the point of burning.  Everything that she has done up to this point has left me with greater rom and feeling better, but I am concerned that this massage may be too aggressive.  I am wondering if anyone has any experience with this.  The stuff I have read at the site Kira cited on the first post of this thread (thanks to Binney's sharing it with me on another thread) seems to concur with this treatment, but it is hard to know, since there is so much conflict out there about le and so little research.  Any thoughts?