Aa
what feels like a tightened violin string...
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 She felt maybe this advice was outdated?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.
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.
I am experiencing the same violin string phenomenon...Mine goes from my armpit where 30 lymph nodes were removed to the inside of my elbow and then across my forearm to my wrist at my thumb. I had an appointment today at a lymphedema clinic and was told that although I have no visible swelling, that it is related to lymph fluid putting pressure on my muscles and nerves. This is a totally unsatisfying answer to me, as I still don't understand what those strings are. Have you come across any more information since you last posted?
They use to take blood pressure in the leg to pre vent these things.....they really should not use the arm on the side of mastectomy, They also use to have the pt wallk there fingers up the wall for exercises, do they do that anymore?
Yes, I got a lot of good information from my physical therapists, especially the third one and whom I now seeing on a regular basis with one or two others once in a while.
My main person actually has a PhD in PT, and she is greater than I could have ever imagined possible. And so are the others. They really know so much more than any doctor about this. So, this is what she said. her name is Jessica. She said Lymphedema is a condition limited to swelling of the arm and or chest area. So in order for this particular diagnosis you must have swelling and which I don't have. (you will also find that the sites discussing lymphedema only talk about the swelling and sometimes it feels like tightness but is different from what we have.) I, like you, had about 20 lymph nodes removed and most of them were cancerous. Jennifer explained that the lymphatic system sort of resembles the vascular system in that it is spread out throughout the body. The lymph nodes themselves are connected through/by lymphatic vessels. Our surgeons removed the nodes but he/she did not remove most of the vessels. In turn, just like is true for other tissue, those vessels become scar tissue, and scar tissue builds up over time. Therefore, fibroid lymphatic vessels are the consequence of removal of lymph nodes. And what happens is that they turn into hard bands , or cords. (Of course, being so close and intertwined with muscles, etc, this also affects the muscles and other tissues, like nerves)
The treatment is to stretch these cords, and PT is at least from my people super helpful. At this point, and my surgery was in December, of course my whole neck and shoulder area is tight and my range of motion greatly reduced. these cords come and go. The one I talked about disappeared and two new ones showed up. jessica says this will keep on happening and although it is not exactly lymphedema, it is of course related and what we have puts us at much higher risk for developing the swelling as well. Eventually, she says, the body may be able to digest those lymphatic vessels, but I cannot say that I understood this well enough to repeat correctly here. Hope this helps. Kat. PS: I hope a lot of people read this since a lot of people have it.
My main person actually has a PhD in PT, and she is greater than I could have ever imagined possible. And so are the others. They really know so much more than any doctor about this. So, this is what she said. her name is Jessica. She said Lymphedema is a condition limited to swelling of the arm and or chest area. So in order for this particular diagnosis you must have swelling and which I don't have. (you will also find that the sites discussing lymphedema only talk about the swelling and sometimes it feels like tightness but is different from what we have.) I, like you, had about 20 lymph nodes removed and most of them were cancerous. Jennifer explained that the lymphatic system sort of resembles the vascular system in that it is spread out throughout the body. The lymph nodes themselves are connected through/by lymphatic vessels. Our surgeons removed the nodes but he/she did not remove most of the vessels. In turn, just like is true for other tissue, those vessels become scar tissue, and scar tissue builds up over time. Therefore, fibroid lymphatic vessels are the consequence of removal of lymph nodes. And what happens is that they turn into hard bands , or cords. (Of course, being so close and intertwined with muscles, etc, this also affects the muscles and other tissues, like nerves)
The treatment is to stretch these cords, and PT is at least from my people super helpful. At this point, and my surgery was in December, of course my whole neck and shoulder area is tight and my range of motion greatly reduced. these cords come and go. The one I talked about disappeared and two new ones showed up. jessica says this will keep on happening and although it is not exactly lymphedema, it is of course related and what we have puts us at much higher risk for developing the swelling as well. Eventually, she says, the body may be able to digest those lymphatic vessels, but I cannot say that I understood this well enough to repeat correctly here. Hope this helps. Kat. PS: I hope a lot of people read this since a lot of people have it.
Thank you so much! I now know what to ask for when I go back to my oncologist next week. They gave me some good information at the lymphedema clinic, like severely limiting salt intake, massaging in a "v", and elevating my arm (all of which seem to be helping) but they seemed to just kind of blow me off when I didn't technically have lymphedema. Not knowing what it was, I was afraid to stretch them too much, but it is good to know that that is exactly what I should be doing. Good luck and many blessings to you in your journey...-Lori
PS: yesterday we were discussing this again and I thought I would update you especially since you just responded and I happened to have my e-mail on. She said two interesting things. The worst case of what she has seen was in a woman who only had one lymph node removed. The other thing she said was that this did not used to be a problem nearly as much in the past as it is now. meaning, it's a new thing that they see this so much in recent years and that is maybe why so many doctors don't know what it is. maybe you can ask your oncologist about that and why this may be. i see mine next week. i thought it may be related to the sentinel node removal they do now? i have no clue. lets keep in touch about this. kat.
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.
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