Good luck with the physio, Tili. If our recent experience is anything to go by, don't give up if you find you're getting nowhere with the one you're referred to. Try a private physio via cancer-physio.com then if that's not working, find a private hospital with a good reputation for shoulder surgery and see their specialist shoulder rehab physio.
Hi guys, so sorry to hear about all your pain, I have just arrived back from the hospital today asking for help with pain for LD reconstruction in 2016 they have suggested specialist physio who work with the breast team. Hopefully this is the way forward for me Good luck
kind regards Tili
Interested that your sister had the same pain as I am in at the moment. I am still waiting for the removal of my implant and replacement.
Have been in pain for nearly two years now am really getting fed up with it. I live on painkillers.
I am so so sorry to hear about your wife, I fail to comprehend why the surgeon claimed not to understand why she was having the pain, my sister went through exactly the same with the LD flap and endured the pain for 6 years also, many of the P surgeons or general surgeons will now say this procedure can cause back problems! The implants my sister was fitted with capsulated and needed replaced, they were replaced with HUGE implants, she is tiny and the PS put DD implants into her, thus her back pain worsened, she too was advised to see a pain doctor. She went everywhere to address the problem because of all the pain, the NHS refused her the Diep on the basis she is so slim, however in August she underwent the Diep reconstruction in Belgium under a PS named Steven Colpaert, she is almost pain free and thrilled with the result. If I can help further just ask, we are a family of 3 girls who all suffered BC
Thanks for the reply. Hoping my pain goes when the implant is removed. Hope your wife continues to improve. Bad enough having cancer without all these added problems.
Hope that goes well for you. On top of everything else, my wife actually had a capsular contracture about a year after her surgery. She was in and out in a day, with very little in the way of post-op pain, complete freedom from the discomfort associated with the concrete boob, and after a couple of months, only a couple of inches of very faint scar visible if you new exactly where to look (ie underside of boob, close to chest).
Nearly six years on, there's no sign of a recurrence, so presumably the different make of implant's much more to her immune system's liking 🙂
Since I wrote about my pain i have seen my breast consultant. After seeing my breast MRI he is going to remove and replace my implant. He seems to think this is the cause of my pain although he says implant has not ruptured.
Time will tell. Still waiting for surgery. He says it will be on a day case basis but I have to avoid lifting for 6 weeks. It will be difficult for me as I have 4 young grandchildren.
I am not expecting an appointment before Christmas .
Hope your wife is feeling better now.
OK ... seven years on, we finally got there. My wife was referred to the Royal Marsden for a second opinion, then to their specialist physio. After a couple of sessions, the physio gave my wife an exercise to do at home which basically jiggered her shoulders and rendered her incapable of doing much at all with her upper body for the best part of three months.
We then found a marvellous private physio who worked wonders (relatively speaking), and we were referred to a pain management clinic. The present state of play is that my wife's made more progress in the last six months than in the previous six years, and she's feeling far more positive about living with the limitations imposed on her by the LD flap reconstruction and radiotherapy.
To sum up the seven years since her op ...
1. We were greatly misled by the surgeon, who specifically said that the only significant after-effect of the LD flap reconstruction that my wife would notice would be a limited ability to serve at tennis, row a boat or swim breast stroke. It soon became apparent that this was nonsense.
2. We now know that something like 40% of women who had a LD flap reconstruction experience debilitating after-effects.
3. Which is why a lot of places (eg the Royal Marsden and a lot of the teaching hospitals) stopped doing LD flap reconstructions..
4. The earlier physio is started after the op, the more benefit should accrue from it.
5. It seems that hardly anybody outside the very small world of very keen specialist breast cancer nurses and physios is up to speed with current thinking on the after-effects of LD flap reconstruction and the management of them. This applies particularly to surgeons.
6. You have to do a lot of research yourself, and you have to be persistent. The help you need is available, but it takes some finding, it will almost certainly cost you £50 or more a session, and it will probably involve travelling some distance.
Finally, if you do find yourself in need of a specialist physio, the best place to start looking is undoubtedly Cancer Physio
I have not been on this forum for a while and have just seen this thread.
I had an LD reconstruction in 2010 and for the last 15 months I have had terrible pain all round my breasts and back.
Like your wife I have been scanned for England but all came back normal including an MRI of my breasts.
How did you get on with physios? Has your wife found the answer.
And another penny drops ...
We tried out the Marnie Clark skin rolling thing this morning, and immediately found that it's a non-starter for the simple reason that my wife hasn't enough slack in the flesh of her back!
I knew it was like that, but it had never dawned on me to think about how little subcutaneous tissue (?) she has in that area. Even if I just press down and try to get some sort of a "wave" of flesh going rather than the "hot dog" in the video, it doesn't work. There's just no slack.
Gosh. Now we have yet another question for whoever we see for the second opinion ...
Of course I meant "that have NOT existed previously"! Sorry for that typo. Best of luck Norman I hope you find what your wife needs. I'm glad she has you supporting her.
... 6 years on, there may be options available to help your wife that have existed previously ...
It's beginning to look like that's the case. Fortunately our GP's very switched on, so present state of play is that we're waiting for a referral to the Royal Marsden for a second opinion as well as an appointment with the nearest oncology physiotherapist.
Meanwhile, the research continues - and I start looking closer into private physios! ...
Trying to be positive for you & your wife, Norman - the field of breast reconstruction is developing fast and there are both new methods/devices and better understanding of outcomes. My plastic surgeon does not do flap reconstruction prior to radiotherapy because of the potential for radiotherapy to damage the relocated tissue. I'm only saying that to underline the fact that 6 years on, there may be options available to help your wife that have existed previously. It's worth researching oncoplastic surgeons and pushing for a referral. It might help to look at the private hospitals near you to see who specialises in this and then asking for an NHS referral - they generally do both NHS and private work but it can sometimes be easier to navigate the private hospital websites. Specialist physio is also advancing and I agree that it is worth paying for - it's probably not as expensive as you think.
... I suggest you really push for them to look at this and that you get a referral to a specialist plastic surgeon - or someone with lots of experience of recons. In my experience they are more open to options, as the breast surgeons tend to be more focused on the cancer removal side.
My wife's surgeon is actually well into boob reconstruction, and he when she needed a capsulectomy a year after the op, he made an excellent job of it. Problem is, he simply hasn't wanted to know about her problems. When he last saw her for the final checkup at op + 5 years, the best he could do before shaking hands and departing was to say "Hmmm, it shouldn't be like that".
But enough of this already. We need to focus on where we go from here - not on why we find ourselves in this situation, so thanks for your input
... one thing I have found on this journey is that you have to do your own research I think it's just that NHS resources are limited and overstretched and they are just so busy.
Oh indeed, and the priority obviously has to be getting people into and through surgery, chemo and radio. We're just mightily miffed that (a) we were badly misled by the breast surgeon when he talked my wife into an LD flap and (b) in the five years that we kept trotting back to the breast clinic, we just went along with what they said. But hey, ATEOTD my wife's still alive and otherwise well, so mustn't grumble. Much.
At least we now feel that we're almost (finally!) clued up enough to really piush hard for some kind of resolution to her problems, hopefully before we hit 7 years post-op ...
Thanks for posting again, whitelily
Hi Norman glad you getting some advice just thought I would repost the video link in case it can help anyone else having similar issues. I hope you found it helpful. As well as stretching and light weights which I found helped me and continue to do so. I had to refer myself to physio after the LD when I had cording and nerve pain one thing I have found on this journey is that you have to do your own research I think it's just that NHS resources are limited and overstretched and they are just so busy. After my recent Tram reconstruction I noticed the tightening feeling had gone as soon as I woke from the anaesthetic I was glad to be rid of the implant I am still a working progress five years on and I remember the doctor saying to me at diagnosis it will just be 12 months out of your life and the rest!! Here is the link for skin rolling after LD:
Ooops! In my post below, for "upper quarter dysfunction", please read "upper quadrant dysfunction"
Gosh ladies, thank you so much for your replies. They've certainly widened our horizons: my wife is right now on the internets knee deep in "upper quarter dysfuntion" ...
As to whether she had specialist physio help, that would have been nice. What we got instead was a couple of sheets of exercises of the walk-fingers-up-wall type to be done post-op for a few weeks, after which the lead nurse checked arm movement and pronounced all well. That was it. Six years later,the only reason we now know there's a specialist oncology physiotherapist is because I emailed the breast clinic last month asking if by any chance they knew of a physio with an interest in cording/post-mastectomy pain syndrome and whatnot.
To clarify, this was a left-side mastectomy with immediate LD flap reconstruction, followed in due course by chemo then radio. According to the surgeon at the time, the only significant downside to the op would be reduced ability to serve at tennis, row a boat and swim breaststroke. The reality of it is that 6 years on, my wife can't, for example, knead bread, use garden shears, shake a rug, run for a bus, clean windows, use a hoe or garden fork. And this is made worse by the fact that she's a very keen gardener who grows a large proportion of our food.
The possibility of having the reconstruction re-done hadn't occurred to us, but it's definitely something to discuss with whoever we get for the second opinion that our GP is currently trying to arrange for us.
Knowing what we now know (and what we're still finding out), it's a bit galling to realise how much better things could have been. But of course, at the time, you're not really equipped mentally to question what the breast clinic says and does (or in this case doesn't do). Then later, when you keep going back with problems, you tend to accept it when they say "it'll get better in time".
But hey ho, we need to move forward. At least now we realise that we're not alone in this kind of situation, and with what we're still learning on here (which includes the Marnie Clark skin-rolling thing which we'd never found online) we're getting better able to understand what the actual problems might be and where we night go from here.
Hi Norman. So sorry to hear about your wife's problems, it must be so frustrating. I don't want to sound ridiculous but did she have specialist physiotherapy during and after her treatment? Surgeons often focus on their specialist area and may make assumptions about what other input has been offered. I have no experience of this but I will be having a flap reconstruction in the future so I am interested! My physio input so far after mastectomy and axillary node clearance with significant cording has made an enormous difference to my outcomes. I hope someone will come along and give you the benefit of their experience. Best of luck.
This post copied here from the wrong sub-forum I posted it to ...
My wife has experienced cording and tightness in her upper arm/shoulder/new boob and upper back since her LD flap reconstruction 6 years ago. As we were told at the time that the only significant after-effect of the op would be if she played tennis, swam breast-stroke or rowed, it came as a surprise to find that in fact it has left her with a very weak upper back and shoulders, to the extent that she is unable to perform many normal daily tasks.
We have consulted her surgeon several times about this, but on the last occasion the best he could do was to say "It shouldn't be like that" and refer her to a pain doctor who was basically no help whatsoever.
Since then, she has been seen by both consultant orthopaedic surgeons and neurologists to whom our GP referred her, and we have lost count of the scans she has had (everything from whole-body nuclear medicine to CT brain via MRI of brachial plexus) The scans revealed nothing of any clinical significance, and both consultants are of the opinion that my wife's problems lie in breast surgeon territory. We are therefore now hoping to see a different breast surgeon at a different hospital for a second opinion.
Has anybody else encountered very significant tightness and back/shoulder weakness after an LD flap reconstruction? And if so, what did you find helped?