what feels like a tightened violin string...

[katarina777]

I have been asking for the purpose of advising women not to have their bloods drawn, and/or blood pressure taken on the side where they had a mastectomy.
Every response so far has been a guess. Since I only have one good vein in my right arm, and this is where I had the mastectomy, lab technicians have a hard time getting a vein on the left side. Sometimes I get stuck three times and then they end up on the other side anyway. So, this last time I withheld the information about not using my right arm, and the lab technician made the tourniquet so very tight that I immediately regretted my decision. sure enough, I developed this cord-like, tight string which goes starts under my arm and goes one third down my upper arm. (I had many lymph nodes removed.)
My question is twofold. What really is the purpose of advising about the blood drawing and BP? And my second question is what may have happened. Is this lymphadema, or a vein or a tendon or what else could it be. The skin is sore and this string like thing is very thin and very hard, but there is no infection or discoloration present, really, and very little swelling. much of the tissue under my arm feels otherwise like scar tissue. Should I be concerned? I asked my family doctor about this since I had to see her for something else, but she did not know what it was and also she did not know the reason for avoiding needles and BP cuffs on arm where you had the mastectomy. She felt maybe this advice was outdated? Nobody else I asked did anything but make wild guesses as well. i thought this may be of interest to others here as well. thank you in advance for reading my question.

[loridun]

It has a name!!  Axillary Web Syndrome.  I just read 1 article from the University of Washington (the first listing if you type Axillary Web Syndrome into Google) and they say that it tends to get better on its own.  My own experience to date is that now, 2 months post-op, it is becoming much less painful.  I have been doing a lot of stretching and elevating on my own, though.  The bad news is that I have visible swelling for the first time today.  Maybe the treatment that your pt has prescribed will be effective in warding off the swelling?  Anyway, when I saw my oncologist last week, she did not seem to know much about the symptoms I was describing either.  Maybe educating our doctors will be a helpful thing for other women down the road.  

[katarina777]

Thanks for sharing your story, or some of it. I am going to ask my PT on Monday about the pain, and if it causes pain or not. (and that does not mean I am questioning you at all.) I just want a response and these guys, or this woman I work with knows an awful lot and they are all certified in Lymphedema massage and all this. When she doesn't know something, she always tells me. also, I will be seeing another one who is really great next week in the same place. my primary one has a PhD in physical therapy, and they are all so great, and really interested and all of them decided this was what they wanted to do and be as young teenagers. They are so holistic and broad minded. i will let you know, Ok, just so we can get another opinion. take care for now, and please, if you have more to say, i would really like to know. I was supposed to have that nuclear shot before surgery but nobody told me about it and my surgeon was not pleased, but I think he did not blame me. all my sentinel nodes were positive and it turned out this shot was not necessary. but now that you are telling me how painful it was I am glad nobody told me.

[zinnia11]

I also had lymph nodes removed at the lumpectomy surgery in November 2006.  Ten nodes were removed, all negative.  By the way, the doctor decided to go ahead and remove the 10 nodes for peace of mind because my sentinal node was never found.  I think that when I had my initial biopsy, they accidentally removed the sentinal node.  I was so unprepared for the painful nuclear medicine injections when I went to the hospital for all of the tests.  I almost passed out, it was so bad and it was all for nothing because they never found my sentinal node.  Anyway, I also developed the tight rope-like feeling on my left, lymphodema side arm.  It sort of came and went for a long time and now it is pretty much gone, knock on wood.  I did have therapy for my lymphedema but I don't know if this is what helped the rope-like bands disappear.  I mentioned it to all of my doctors and none of them really had a good answer for me of what they were.  They did all say, however, that lymphedema does not cause pain.  I have a hard time believing this, even though this is what all of the text books and doctors claim.  I have read too many first hand experience blogs that suggest otherwise.  It is so frustrating when you don't feel like your voice is being heard.

So Katrina777, I hope the tightness eases up on your arm as it did in my case.  
Best Wishes,
Hillary

[caringboyfriend2]

Thanks for your post, found your thread...
What I could find sofar was mainly the suggestion to do phisio or Masaging.
It seems that some times the masaging and or Phiso will snap the cording and this cases a imidiate relife for the Paitient (ROM and pain)
I found this info in an article: Physical Therapy Treatment of Axillary Web Syndrome, by Kepics, Jane M
Try this link:
http://findarticles.com/p/articles/mi_qa3946/is_200401/ai_n9370189?tag=artBody;col1
Good luck to all

[katarina777]

Thanks for sharing in the discussion, kathleen. that is really helpful information and I hope as many of us possible will continue to share new discoveries.  I wrote two long comments over the weekend but my password did not work and I wasn't able to post. Thanks again, and hope it goes well. i have been at this PT for three weeks? and it's wonderful but don't expect to see major results right away. kat

[Kathleen888]

I had one sentinel node removed in Dec. and have an appointment scheduled next week with a PT.  The tightness has now gone down my arm so the forearm is sore now, too. I will post what she has to say.