I had third acupuncture session on Thursday after trying lots of other things (including steriod injections) and I do think it has improved the 'front' problems where he is specifically working. The hard lump above the implant I have which was painful to touch is now just a hard lump and also not got so much 'burning' sensation from it. I have one last appointment this week and will let you know how that goes.
Do I understand that some of your problems were 'cured' when the nerve was cut and was that with a different surgeon to the original one??
Are you now left with pain management only?
I originally thought the pain was caused by the jumping and contracting due to the nerve but that was a different kind of discomfort and was cured when the nerve was cut. I am left with chronic pain and have self diagnosed the PMPS after searching the net its fits my problems exactly. The medics have never mentioned it but I seem to have had all the treatments available so far.
The surgeon told me also that removing the implant would not improve the pain problem.
Is the acupuncture helping at all?
So sorry you have been in pain for four years and I have never heard the term Post Mastectomy Pain Syndrome, what on earth does that mean.
My surgeon did suggest last time I saw her that I had the implant removed which even after all the pain still horrifies me but the pain consultant who is trying acupuncture says that the 'damage is done and taking out the implant would not improve anything'. I have the third acupuncture session tonight (I am very fortunate to have private insurance through work) and trying to be positive but at the moment not much help but I think it works for some and not others.
Until I looked at these forums I had never heard about the nerve being cut but I can understand why it would be done if that is the thing that causes all the 'tension'. Not something that my surgeon has ever spoken of.
Has the pain improved since you had the nerve cut and if not would you have gone through a second operation if you had known?
Really interested to read this thread. I have sufferred from pain for a long time and also would not want to put anyone off as I believe it is quite rare. I had LD with nerve left alone, then I had it cut about 18months after op due to similar symptoms. I still have continual pain problems 4 years on which I now think is due to Post Mastectomy Pain Syndrome. I am seeing my second pain management team and am on the waiting list for Acupuncture.
I hope everone gets the help they need, good luck.
Thanks for your response. Thought I had replied yesterday but as nothing is showing couldn't have - operator error!
My surgeon is still going down the pain management route but because my discomfort over the eighteen months has increased I feel there is something wrong and so therefore do not feel entirely happy accepting just pain management if something else can be done to relieve the pain. Did you have an operation after your mastectomy/reconstruction to cut the tendon under your arm? This is one of the areas that is very 'hot and tight'. There is quite a 'baggy' area now under my arm which aesthetically I am not bothered about - everything looks good in clothes - but I wonder whether this is significant along with the bubbles of implant I can feel. It feels like the muscle is trying to get back to where it belongs! My daughter put me in touch with a plastic surgeon for a second opinion but unfortunately he does not carry out this type of reconstruction so again offered pain management. Where about's generally is your second surgeon from??
My GP has been very helpful and supportive but of course it is such a specialist op she cannot answer my queries.
Trying acupuncture for pain relief this week and still hopeful that things will be OK in the end - like you would still have had an immediate reconstruction, just been unlucky.
Thank you again for responding
I am sorry to read about you and your pain. I think I can understand where you are coming from as I remember how lying down used to help relieve the pain and discomfort.
I understand the tendon to be how the LD flap is attached to the humerus bone under the arm pit. The nerve comes with the LD flap from around the back. Perhaps someone can help us if I have not got that quite right.
Have you considered getting a second opinion? I found it helpful to have confirmation of possible solutions and the second surgeon explained things more clearly. Perhaps you can talk to your GP if you find it difficult to approach your original surgeon.
All the very best
Hi All - First time I have entered comments on this very helpful web site but quite desperate now and Sallyann's comments particularly seemed similar tomy own experience. I had a mastectomy followed by immediate recon using back flap 18 months ago. All OK and went back to work to try to get back to 'normal' (in an office) after six weeks - worked short days initially as sitting up has always caused discomfort to build up more. Laying down even now relieves the 'pull'. I have a lot of heat at the front and also I have 'bubbles' around the implant coming through. My surgeon assures me there is nothing wrong so we have been going down he pain management route - some of which made me feel worse than ever!!! The best was a mixture of amitriptipline and pregabalin but I was always feeling exhausted and unable to function properly so took it upon myself to stop taking these and the pain consultant recently tried six nerve block around the front and back which haven't worked and so I am going to try acupuncture next!!!!!
Sallyann I still find ironing and hovering very difficult but it is not the new breast contracting it is more physical and the pain usually ends up tracking down my arm and going into my shoulder blade which of course constant discomfort 'gets you down' and therefore I am most interested in your comment about the tendon under your arm being cut and Foxychick having a choice of 'cutting the nerve from the lat muscle' before the op. Excuse my ignorance, is this the same nerve?? I am wondering if this may relieve my discomfort.
Best wishes to everyone - I have realised how brave women are and just 'get on with it'
So glad to have read this thread. I had my reconstruction last June and have the elastic band effect and the whole area feels so tight. I cannot sleep on that side and also can't use that arm for much activity. I am happy with the look of the reconstruction but if I touch the boob all I can describe it is like banging your tooth if you have toothache. Its such a strange sensation. Everything is just so uncomfy. I have heard about having the muscle loosened or cut. Just want to be able to do things aand hopefully get back to work.
I am seeing the physio next week and hope she can help loosen the tightness and will get the breast nurse to have a look. I haven't heard from the BN since last July.
Best wishes to you all
I'm now 5 weeks after the op (mast +LD) and nto 1st cycle of chemo. Op seems to be sorting itself out well. Some discomfort under the breast and into the armpit, but pretty good, I can still contract the muscle but it is no bother. My surgeon said if it became a problem the nerve could be cut but she would prefer to leave it there if possible. I can't remember why - but she did give a reason - it might have been to do with the size, as I haven't had an implant with it.
Cath, I guess everyone reacts differently, and I'm not a very active person, but I don't notice much weakness from removing the back muscle. I get a bit more tired in the shoulders by the end of the day maybe. My surgeon said the other muscle that does the same thing would compensate. Swimming helps.
How are things with everyone else?
Foxychick, the seroma on my back seems (touch wood) to have stopped collecting after being drained the second time last week.
I found this topic really interesting and informative. My surgeon has not mentioned tendons or nerves at all to me. I am currently considering reconstruction after a mastectomy in September 2006. Work commitments have meant that I haven't been able to have surgery yet and probably won't be able to until this time next year. These delays are hard not only because I don't like what I see in the mirror now - but because the longer I wait the more times I change my mind about what type of reconstruction !! My surgeon is strongly suggesting LD. He says that an implant would not be suitable due to my breast size (36c - average) and that the results would not be what I am looking for (not stupid - know will not be perfect).
My main consideration is my job and whether I will be able to safely continue with it after LD. I am a police officer (no comments please !!!!!) and sometimes will need to get involved in altercations (polite word!) although not often, and will need to wear a stab vest and carry equipment every day. My surgeon says that IF there is any 'disability' it will be minimal and he sees no problem with me being able to continue with my job.
Is there anyone here who has had this LD surgery, has an active job and has carried on with it, or had problems with their work after??
(gonna start a new thread with this one also)
Thank you all for your well wishes!!!
I am now nearly two weeks post operation, doing pretty well I think. I had an LD flap with permanent implant put in! I haven’t noticed any difference after back muscle has been removed and my right arms moves quite freely straight from the first week. The nerve has been cut during the operation, my ps is doing it routinely because too many women has been referred back to him by those breast surgeons who can’t do it. He wouldn’t have discuss it with me either, but I needed operation codes for insurance purposes and that’s why it came up. I don’t know how I would feel if I still had the nerve, but I feel pretty good without it. No aches and pains, only slight burning sensation due to skin nerve damage. I don’t have a rubber band sensation either, but I do feel like someone grabbed my skin around shoulder blade and pulling it away - it is quite uncomfortable, but I’ve been told it will go once my back will heal. I still have some seroma under my armpit and at the back. It shaped now as a banana under my skin. They taken out the dressing and flap looks healthy and properly attached to the breast, however small corner of breast skin has died (sterilstrip blocked the blood supply) and I am worrying about it as it is still weeping and nurse a plaster over that bit. She said it will form a scab and fall off, but will not leave a big scar. I wonder if this happened to anyone else?
As for tendon I have no idea whether it was cut or not, I will ask my ps when I see him next time.
Carol, so sorry to hear that you will have to go back to operation, I hope that your surgeon will put it right and you won’t have to return there anymore!!
Just thought I would update you on my progress. I saw my consultant last night and the ld flap has pulled away from the chest hence the ugly dents and the discomfort/pain that I have with it. He will see me again in 3 months time and will then get me booked in for about a 2 hour op where he will go in via the nipple area scar and remove the implant, replace with a slightly larger one and reattach the flap so I will be back in hossie for about 2 or 3 days and overall recovery time will be even longer now.
Sincerely hope that you are all ok, luvnhugsCarolexxx
Hi i had my recon done last june, i didn't get a choice of having the nerve cut, but i can't get in or out of the bath anymore as i cannot bear the contraction in the new boob, the boob is fantastic, its nice and soft now, but if i weight bear on my left arm then it just contracts, i really don't like that and its caused a lot of problems with my left shoulder as i tend not to use it if i can help it. i am having more physio on it now, so hopefully it will subside, but i don't regret having this op done, i am only small busted, and i have an implant as well, but i really am amazed at how good it looks and feels. all the best in whatever you decide
I had lat dorsi op 10 weeks ago and had not heard about cutting of tendons or nerves, not wanting to put you off this op as overall I am happy with my result so far and for the majority it gives a fab result and for younger and taller women.
I am 5ft and have nerve pain due to my lack of height and very little fat so they went in deeper than they would have liked to in order to get enough to do the recon and I ended up with an implant too. I had severe nerve pain for around 6 weeks then got new pain relief and find it really manageable now also it is lessening in the area that it covers. Please ask about this as this is another in the cons list that they don't tell you about as very few people have the nerve pain. I also have the contracting jumpy boob which is a common thing, not sore just looks strange and I am fine with that but I do have some pretty bad dents in the cleavage area which I am really upset about. The dents does not happen to many women but again they don't warn you about this. Saw my BCN yesterday and she was quite upset to see the extent of the dents (we get on really well, she is lovely) she says to massage the dents as it is either adhesions or that the lat dorsi has moved and that the consultant will discuss with me at my 3 month assessment in March. Finally I also have what others describe as the elastic band tightness which originally felt like I was being squashed and very sore probably made worse by the nerve pain I have but now it is just a very very tight feeling that I get when I do too much but not sore, just uncomfy.
I wish you luck Foxychick and please don't be put off but do ensure that you ask for all pros and cons to be divulged to you and not just what they choose to tell you.
Sue, saw your comments above, so good to hear that Lisa is doing well, love to you both. xxx
Hi, I agree - I wouldn't want to put anyone off either. It's still very early days for me, but I have been truly amazed at how well it has gone and the result.
I believe I have been unlucky. Now 2 years after the LD flap operation I am waiting to have the nerve cut,
I have a beautiful breast but it still has a mind if its own which I find extremely distracting and tiring. It does not like ironing, using a computer, driving and going for long walks!
I was in pain for some time before the tendon under my arm was cut. This procedure took away the elastic band felling and the tightness across my chest which was bad at night. What I have now is not pain but discomfort.
The surgeon that did the original operation has never had to cut the nerve. I don't think he had come across my situation before though he knew it does happen. The surgeon who I hope will do the procedure to cut the nerve has done in 7 times in 700 cases! He told me I had been very unlucky. It is not discussed with patients beforehand because it is so unusual. However it is recognised complaint and I found an article in an American medical journal that describes my complaint and the procedure of cutting and taking out part of the nerve.
I was interested to read that Foxylady seems to have had the discussion before hand about cutting the nerve in the original operation. I don't want to put anyone off going ahead with their LD flap. I am optimistic that all will be right in the end. Sallyann
Hi, I'm interested to hear what you decide, Foxychick. I had my LD reconstruction 2 weeks ago and find that I can wiggle the new boob up and down. I'm not sure whether to be pleased about this or not! My BC nurse says this effect doesn't normally last, but the nerve can be cut if it is a problem. I'd be interested to hear why you find the contraction a problem, sallyanne - is it painful?
My daughter had mastectomy and LD flap recon in Novemember .. she had no nerve cut and had no pain at all .. slightly discomfort in back and from where drains were in but not real pain and managed with taking only Ibuprofen and Paracetamol. She was really surprised. She only had a few contractions from new breast when she first got home but is still surprised that she has no pain and all movement back in arm and back. She is really pleased with the result too. She will have nipple done in about a year. Hope this helps.
Do I understand you are having the choice before the operation takes place whether the surgeon cuts the nerve or not ?
I had my LD flap 2 years ago . I am now in discussion with a second surgeon to have the nerve cut because of the contraction i still have in a beautiful "breast".
I would be really interested to hear what the pros and cons are, that you have been presented with. I understand I have been unlucky. I understand most people do not have the nerve cut and have no problems. Originally I did not have the tendon cut under the arm but my original surgeon now does that routinely he told me.
After agonising hours choosing type of recon, I am facing another dilemma: I can’t decide whether to cut the nerve from the lat muscle or leave it intact. What are advantages/disadvantages of doing this? And what are your experiences before and after the nerve being cut? Please let me know.