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.
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??
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
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 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 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
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.
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
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
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??
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?
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.
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 - 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
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.
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 initial problem was acute calcific tendinitis - a build up of calcium, which is a paste-like substance, in the rotator cuff tendon, that causes swelling and extreme pain. I have had a frozen shoulder from an injury on the other side, and the symptoms are very similar. Because I couldn't have the surgery to fix it for 10 months whilst I was on Avastin (because it causes clotting problems), my shoulder completely seized up. The steroid injections took me out of the acute phase of the tendinitis, so the pain was much less, but left me with very little movement. The surgery was to release the paste from the tendon and then a procedure which sounds like capsular release (although I didn't ask the specific name)to get the joint moving again.
The big difference for me following the surgery is I now have no pain at night - before, finding a comfortable sleeping position was really difficult. I can manage the movement issues, particularly as it wasn't in my dominant arms, but the sleeping problems were really getting me down.
Thanks Finty, I have to say I'm not keen on a short term fix such as the injections. I've stopped all stretching at the moment becuase it seems to be making it worse and I'll see what these specialist physios say.
Can I ask you too what keyhole surgery you had and what the problem was?
I did tell my breast surgeon about it but he wasn't interested. I think he won't acknowledge the connection between the surgery and the shoulder problem but I didn't have it prior to that. It started a couple of months after.
Elinda I had three rounds of steroid injections in my shoulder last year - it gave some relief but didn't solve the problem, my consultant said it has about a 30% success rate. Also, the injections are really painful:( So I went ahead and had the keyhole surgery a couple months ago, and am now doing some intensive physio to get the joint moving again. I highly recommend buying a physio pulley that you hook over a door, and use to stretch the shoulder joint.
On the positive side it does sound like it is something they can treat. Did he say what had caused the problem? Was it the breast surgery?
I have very mild lymphodema already but my nurse has said that although a steroid injection isn't the ideal, it's a case of weighing everything up. All in all she said if I need it for pain management then I should have it. Would I have surgery on my shoulder? - yes if they could guarantee that I would have less pain afterwards. I think I'd want to know all the details of what the op entailed etc.
I've been referred to a musculoskeletal team which I think is specialist physios. Funny how we all seem to get different referrals and treatments.
I hope the steroid injection helps with the pain in the meantime. elinda x
Well I had an appt with my ortho yesterday after having an MRI (ordered by onc to check for mets) Glad to say no sign of cancer but my shoulder is a mess. He gave me a steroid injection as a temporary measure but he feels it is too far gone for the injection to have any real affect so he wants to operate (keyhole capsular release)
I am nervous about having another op on my bad side because of lymphodema risk but I have soemtime to think about it. I have also developed in the last week a nasty tight pain in my inner forearm that only comes on when I stretch my arm out. The cons thinks it is tendonitis and has told me to take regular ibuprofen and rest it. I'm not sure because I wonder if it is cording but so far nothing to see.
All in all I am pretty fed up with my 'bad' arm.
Re: adhesions. I ended up with adhesions because I could not move my arm properly. Eventually (long saga) had an arthroscopy to remove the adhesions but it made no difference to arm movement as that has been well and truly $%^&*() by LD flap. In a majority of cases arthroscopy does help with pain (I had none) and improves movement IF the problem really is in the shoulder and not the axilla, arm etc. It is worth a try and is only a short procedure with little pain afterwards and very quick recovery. The other thing I had with an MUA (Manipulation Under Anaesthetic) whilst I was still being mis-diagnosed. Needless to say it had no effect!
Has anyone had a steroid injection into their shoulder? My physio says its an option. She says doesn't work for everyone but for others its great.
Also interested to know about possible adhesions and treatments.
Dizzy - why do you have pain in the other arm, is it related to BC treatment or something else? Have you thought about massage therapy? Is it possible that it relates to soft tissue? I'm sorry but pain isn't inevitable with ageing and certainly not at the level you're experiencing - so much for a pain clinic!
I've posted on here before about arm/shoulder pain. Mine started a year ago and was diagnosed as tennis elbow. A year later I've had physio which hasn't helped (she thinks its nerve damage from rads). I also get pain in the other elbow. Have just been to the pain clinic and felt really disappointed. I'm going to have a Supra Scapula nerve block (injection into the shoulder). He's ignored my other arm, which I can't actually straighten. I can't lift anything or even carry a water bottle. I'm training for the Moonwalk and have great pain whilst walking, don't know what to to with my arms!! 😞 Pain clinic doc just said as we get older we do get pain!!!!
Thanks for all your comments. It is beginning to seem to me that the docs/physios don't really know what goes on in the shoulder/arm area after bc treatment. I too am getting very painful spasms in my breast/rib area which take my breath away along with all the shoulder pain and stiffness. My physio actually rang me today and said she would like to see me next week as my appt with consultant is not until 16th May so at least she is trying to help. Will keep you posted.
I started physio last week for what my specialist thought was a frozen shoulder. The physio did a check up and she thinks it's not a frozen shoulder but pain possibly related to my rads treatment and I have muscle wastage in my arm and shoulder area. I've been given some elasticated strapping to use in conjunction with an exercise plan, I was told to stop the excercises if I have any pain whilst doing them, I already have pain,thats why I went to the physio in the first place!
I also have something called costochondritis which is painful spasms in my chest and sternum.
I will just have to see how it goes...
I have had problems for over a year now with chest spasams and a stiff shoulder - had physio and that did not help at all. I started a Yoga class at the breast cancer Haven in Leeds seven weeks ago and I am pleased to say that most of my symptoms are much better. Give it a go and see but I'm sure it will help.
Lots of love Tog51
I had a similar problem because the machine broke down at my first radiotherapy session and I was left "in position" for 20 minutes while the engineer worked around me. Yes, I can laugh now 2 years on. Wasn't funny at the time... I ended up with a frozen shoulder and was in excruciating pain for weeks.
It shouldn't matter whether your surgery was private or not you should be able to connect with a BCN on the NHS through your GP. Mine was excellent at fast tracking appointments for physio on NHS and getting strong pain relief to enable me to do the exercises prescribed. It took several weeks of daily physio sessions but we got back to enough mobility to continue with my radiotherapy. Much longer for the pain to go away but my physio didn't sign me off until I was confident and she was happy with my mobility. I live in Scotland and our system is a bit different but not that much.
Go back to your GP and ask to be referred to your local breast clinic.
Good luck, Jan xx
Viv - I am really surprised by that wait for private. Is there someone else you could go to privately? A second opinion wouldn't hurt anyway as he was so dismissive of your surgery. Shoulder pain is not uncommon after breast surgery afterall.
CM - were the adhesions due to the breast surgery? Did having the arthroscopy make a difference?
I was "treated" for frozen shoulder for very many months and then someone eventually suggested a MRI scan. I had adhesions and an arthroscopy and never did have a frozen shoulder. My BS mis-diagnosed, no surprise there. It wasn't until I got myself (without GP) to another hospital out of area that things got moving. You need to push for help otherwise you'll likely get nowhere.
If you do in fact have traditional frozen shoulder then it can take up to 2 years or more to subside; I'm saying that so you don't expect a miracle. Have a look at patient.co.uk and that might help.
This is just another well known risk that we are not warned about. The Amoena magazine did an article about it several months ago so it's not rare but "carers" don't acknowledge the risk by and large.
I hope you get some swift pain relief soon.
The appt is a private one..apparently he's very busy! I have decided to go to my GP anyway...if anything just to get something for the pain.
Viv, that's a long time to wait. Is there anyway you could pay for that consultation privately. I shelled out £150 for an appointment to see a rheumatologist when I was having back pain, think that's about the usual price.
The other option is to go to your GP and see if he/she can speed things up given that it is a pre-existing condition and this would be follow up.
Thanks for replies. I have kept up my exercises but have got to the point that I can't do some of them now as too painful. I rang my physio today and she said i should return to shoulder consultant. I have rung hospital but earliest appt is 16th May. I have taken the appt but if it get's worse I may go to GP....unfortunatley as my BC treatment was all done privately I don't have a BCN!
Definitely don't leave this. I think you need to either contact your GP or your BCN as Bluebird suggests. You need immediate treatment to ensure that you don't develop a frozen shoulder again.
I've had a lot of shoulder problems since my mx but not specifically frozen shoulder. I have tightness and pulling on the chest and under my arm and my physio and massage therapist both think that this is a factor in the shoulder problems.
Probably stating the obvious here but are you religiously doing all the exercises you've been given too?
Why don't you contact your BCN or see if you can see breast surgeon sooner. Hopefully they will be more understanding and they may arrange more physio for you.
Don't suffer in silence.
Half way through radiotherapy (mid Sept)I developed a frozen shoulder. After weeks of physio I eventually was referred to a specialist who performed an arthroscopic hydradilatation (basically steroid plus water into the shoulder joint to free it up). I had further physio and the shoulder improved dramatically. My mobility increased by 50% and the pain reduced by 80% 6 weeks later. I have carried on the exercises but the pain is slowly coming back, together with a new constant throbbing and sickly pain in my upper arm. My underarm and breast area is also still very tight and quite painful at times.
What I wondered is if anyone else has had a similair experience. I don't really know who to go back to on the medical side as the shoulder consultant wasn't really interested in the fact I had had breast cancer/surgery and I don't see my breast surgeon for another couple of months. I'm just frightened I will end up as bad or worse than before.