Thanks Finty, doesn’t sound like yours was from axillary or breast surgery then. Very glad to hear the surgery has helped you.
Viv - would be interested to know what they thing the cause is of yours. I’m sure mine is the axillary node clearance or the amount of chest muscle they removed.
Hi Elinda
My cons just said that he sees this problem quite often in ladies who have had breast surgery, nodes removed and radiotherapy…but he has never said which bit in particular. I feel that it was the radiotherapy that triggered it all as that is when it all began.
Viv x
Viv - would you be willing to post again when/if you find out more? I’ll do the same when I’ve been to the musculoskeletal clinic in a couple of weeks.
I’d be very interested to know if we have the same problem. Although mine definitely started post surgery I also had rads so it could be a bit of both. Elinda x
Hi Elinda
Yes I will definately keep you posted. I have to say I am getting more and more frustrated as the tight pain in my forearm is staring to really bother me. Can I ask if any one out there has had has this and if they found out the cause?
Viv xx
Hi Viv, I just wanted to share my experience with you. When I had my first mx and lymph clearance Nov 09 I went on to have Rads Feb 10.Following that I started to develop a stiff shoulder, which got worse until it limited my arm movement, this went on to spread to my neck, constantly living on pain killers. In November 2010 I had preventative mx on the other side and at the same time the surgeon had a look around on the other side and changed the implant. The capsular contraction and mutated tissue he removed as he said it was very dense and distorted. Couple of weeks after the operation, I began to realise that he had released the pain. It has started up again now but the pain relief that you will get from the op will definitley be worth it. just wanted to share that with you.
Take Care
Sharon
It’s so interesting to hear what surgeons are saying about the damage that surgery/rads is doing.
Viv - the tightness in your forearm could possibly be the start of lymphodema. I hate to say it but that’s how mine started. I don’t know anything about cording. The other thing I wonder is vein damage from the chemo that can last for ages. Do you have a BCN you could talk to? Or perhaps the helpline could advise and also advise on what exercises might help.
Sharon - can I ask why your pain has started up again? Did he say the relief might only be temporary?
Elinda x
Hi Elinda
It has crossed my mind that it could be the start of lymphodema and that is another reason I am worried about having the op on my shoulder as I know it may increase the risk. I have today made an appt with my physio as she is the specialist physio for breast cancer and seems to know quite a lot about lymphodema/cording etc. I will feel a bit more confident in her diagnosis of this new pain than the cons…daft isn’t it??
Viv x
It’s not daft at all Viv. Some health professionals simply inspire more confidence in them. It’s also great if she knows quite a bit about all of this as she will see the overall picture rather than say just focusing in on the shoulder.
Hope your appointment goes well and please post what she says if you want to share. Elinda x
Update
Today I saw my physio and she confirmed that I do have lymphodema in my lower arm and cording (not tendonitis). She has made me an appt with the lymphodema lady for next week. She confirmed though that I absolutely should have the surgery. Although there is a risk of agravating the lymphodema by having surgery she said there was a greater risk of aggravating it by doing nothing as the stiffness and lack of range of movement in that arm caused by the frozen shoulder is contributing to it in a major way!!
So I will get back to my consultant and ask to go ahead. In the meantime I may be getting a lovely sleeve 
x x
I am sorry to hear that Viv. You’ll find lots of support on here with advice re lymphodema. Sounds like you’ve got an amazing physio though! My didn’t even really know what lymphodema was!
I’m going to the hospital next Tuesday for my shoulder assessment so I’ll let you know what they say.
Elinda x
Hi everyone. I had lumpectomy plus clearance, chemo and rad last year. Have been diagnosed with lymphoedema in arm and breast since Feb 11. I experience constant pain in my breast which is sooo… sensitive and burning sensation in ribs and chest wall. Have been told that rad can affect bones/lung. I go to lymphoedema clinic and have specialist tape applied to breast to encourage glands to drain, also have compression sleeve. Can anyone tell me how long bones will be sore? Don’t want to be a moaning minnie but some days it gets me down. Cheers xx
Viv and everyone - Update from my appointment today with the muscoloskeletal team. I saw a senior physio who said that the problem I was presenting with was quite common in women who’d had the same type of surgery but also hard to treat.
Her view was that mine was muscular in nature and was an issue largely with rhomboid muscles (those that go under the shoulder blade) although others too such as those going up to the neck. She said I was very tight across the pectoral muscles and it was pulling my shoulder forward. Basically it was to do with the big shift in the muscular structure.
I’m going to have further acupuncture to control the pain so I can do more stretches and have more physio etc which at the moment cause it to flare up. If that doesn’t work I’ll be referred to the pain clinic.
So my treatment is very different from others on this one it would seem.
Lottie - sorry no idea on that one. I think it would be a good idea to start a separate thread on that as someone may have experienced it. Elinda x
Hi Elinda
You seem to have had a thorough examination and the problem pinpointed. I am sorry to hear that it may be hard to treat but I hope the recommended treatment works. I was told by my physio that I couldn’t have acupunture in my bad side. Obviously you have had it before with no side effects. I hope you get some relief soon. Let me know how you get on and I will report back after my surgery.
Viv xx
Hi Viv
We’re all given difference. I had acupuncture from the physio in my health centre who checked with her supervisor first. That was about a year ago.
it’s not ideal of course but if the option is to live in permanent pain or have a go with more acupuncture then I feel I have to do it. The other option would be injecting into pressure points which would be more risky. Elinda x
Well finally got my sleeve and I have worn it for the first time today. Guess what my hand has swollen up. Is this usual? I will ring the lymphodema lady who measured me up tomorrow but should I take it off in the meantime??
Viv
Had surgery last Friday…Capsular release and subacromial decompression for frozen shoulder and impingement. Woke up in excrutiating pain as cons had decided against giving me the normal nerve block duting th op as he wanted me to be able to move my arm right away because of my lymphodema. As a result I was kept in overnight (should have been a day case) because it took some pain to control the pain we anything other than morphine.
Day 3 and still taking regular Tramadol so I can do the exercises the physio gave me.
Elinda I will keep you updated regarding my progress but the cons did say it will take about 6 weeks to get back to my pre-op state and 6-9 for full recovery.
In the meantime my lymphodema has increased but only to be expected.
Viv x