This post copied here from the wrong sub-forum I posted it to … :smileyembarrassed:
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?
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.
Hi there Norman. I had similar but not as serious issues with my LD flap which I had 8 years ago. Lots of tightness from front to back and weakness in my shoulder/back. I managed it through targeted weights work and stretching in the gym and was lucky it was in my non dominant left side. I was diagnosed last September with a new primary cancer in my right breast and absolutely refused to have a reconstruction involving muscle use or damage. The surgeon (same one as before) referred me to a plastic surgeon to look at options. She said this type of issue is quite common, especially if you have an implant which accentuates the pulling. Net net I have now had a bilateral DIEP reconstruction which included the removal of the lat recon (the implant had also leaked). 6 weeks out my left side feels a million times better with the DIEP. All tightness front to back gone and shoulder pain a lot less (although still a bit stiff from surgery). So I think it is definitely worth seeing if you can have the reconstruction redone. If a DIEP is a step too far, there is now the option of an implant inserted on top of the chest muscle supported by a matrix. This is quite new (they always used to cut the chest muscle and put the implant underneath). It was offered to me (but I did not want an implant). Good luck- don’t give up. But targeted weight based exercise is also v good to strengthen the back.
Norman- those symptoms suggest your wife’s upper back is completely frozen poor thing. I think some good physio advice is a must (maybe pay for a private course if you can). And/or a good personal trainer at a gym (who specialises in injury rehabilitation) could be a godsend. Seriously- I found both really helped me. In terms of redoing the construction- 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. Very best of luck.
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.
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.
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