Back Problems following LD Reconstruction

[Guest user]

I think we really need to discuss how we feel. I know what you mean about everyone thinking you are ok, I have always been good at hiding my feelings but not at the moment. Have been avoiding friends and family as I don't want them to see me in such a state.

Am off to get my dressings off at 11.30 so will be back on later. Have quite a bit of liquid on my back but it has helped with getting comfy at night so don't really want to loose it yet.

I can't believe it took so long to get back to you, you would have thought that it was obvious from the mammogram that it was there.

Thanks for letting me know how you feel, I know I'm not alone.

Love

Ann

xxx

[ForumMember]

Don't apologise. I still have this thing in the back of my mind that it will come back and I think we all do but as time goes on you don't think about it as much. God knows how I would deal with it if it did come back but we have to don't we. There are so many fantastic ladies on this site and some have young children and I don't know how they do it. Chemo was hard enough on my own never mind having little ones to see to.

I was always on the go before and doing everything for everybody. I dealt with my diagnosis,surgery, chemo and rads well and people say too well as some just see you as normal. I get upset when people think well you've had everything done now and you're okay. But we aren't. It's hard and I still get upset.

I am 53 and had routine mammogram last March and they didn't get back to me until May and then had op middle of June. Long time from March to June. My cancer was Grade 3, 6cms, HER2 pos which I can't get out of my mind how aggressive it was.

Sorry to go on.

Love Liz xx

[Guest user]

Thanks Liz

I have been posting in the newly diagnosed up to now, but thought it would help to hear from others who had been through the same op as me.

I really hope that I can start to feel normal again at the moment I don't want to do anything, normally I don't sit still. I keep finding myself thinking that I am going to die and feeling lost. This isn't like me I am normally so positive but I just can't pull myself out of it.

Sorry to complain I know that we must all go through this, hopefully I will feel better soon.

Thanks

Love

Ann

xxx

[ForumMember]

Hi Ann

I think you will feel like that. It's the trauma of everything. Before the op you are kept busy and if like me "just getting on with it". After the op you have more time to think. I remember thinking in the middle of the night that the muscle still thinks it's in my back - something I hadn't thought about and nobody said anything. I feel I should have had more counselling about it and the effects. It jumps when you cough or sneeze and I used to put my arm across it to hold it in place ! It still does it but no as bad.

I am not sure whether I will get a nipple done. At first I thought no, not at my age, but I may do.

The last 2 weeks the muscle under the arm and around the boob seems to have gone hard and I am finding it hard to sleep on that side. I find it constantly uncomfie but as I've said before I would do it again. The muscle won't get smaller but it does get softer. I had quite an indent and the physio worked on that and loosened it which was great because I thought I was stuck with it.

I hope you start to feel a bit better but a good weep does you good and don't forget your exercises !!

Much love

Liz xx

[Guest user]

Hi ladies

It's good to know that many of you are happy with your reconstructions it gives me something to look forward to. At the moment as I only had my op 8 days ago, I still feel very tight and bruised. The lump under my arm definately feels like the muscle so I don't hold out much hope of it getting any smaller. I was really positive before I went in for the op, but have been falling to pieces over the last few days. Did any of you feel like this?.

Love

Ann

xxx

[ForumMember]

Hi Diane - thanks for info.

I am 12 months (on Friday) and I have to say that I thought it would be better than it is BUT it is a lot, lot better than it was !!

I am looking ahead now that in 12 months time it will be fine and I would certainly do it again. I like my cleavage. My niece's friend is due for her reconstruction at the end of the month and she is glad she has done it that way and waited 18 months. She's had chemo and rads and won't have that irritating the reconstruction. She is also having the other breast made smaller at the same time. She had to lose 2 and half stone before they would consider doing the op though and she has got to her goal.

I could do with a personal masseuse for my back !!

Love

Liz xx

[Guest user]

Hello everyone. I'm 6 weeks post op for right mastectomy with immediate LD reconstruction. I must have a really good consultant - I was told all about the hollow back, lump under the arm, weakness, settling period and possible seroma. Possible! On average I go twice a week for draining and so far they have taken away nearly 4 litres of fluid. The last time was only 180 mls, so it is hopefully settling down.

I did have to go back in at 4 weeks because of an infection in the breast. The consultant opened up the original incision slightly and washed the reconstruction. They said there was a small old haematoma and lots of fluid which hadn't drained, but the actual infection was in the skin. I'm on very strong antibiotics, but it is improving - the red area is reducing now.

All my scars have healed beautifully, I have a slight flat area at the side of the nipple which is in the middle of the infection. I have to say that I have not felt ill at all either before, during or after any of the procedures - lymph node sampling, reconstruction, "washing" and I didn't know there was an infection, just thought it was another change of colour for the bruising.

I do experience the tightness when walking - it feels like I have a very strong elastic band round half my body and as it tightens I slow down, sometimes quite noticeably. At least I know now it isn't a short term effect of the reconstruction. Timescale is the one thing the hospital has been very wary about, but they still seem to err around the 6 month mark for everything.

I have to say, ladies, even after reading some of your stories, I would still not change my mind. I would still have gone for immediate reconstruction - the thought of no breast or nipple was horrendous. Everyone tells me I am so brave for what I have done, but the brave ones are those of you who waited for reconstruction. Also, I will not be having chemo or radiotherapy, just hormone treatment (bring on the menopause!) .

Thank you for your comments above. I now have a better idea of what could happen and will be straight onto the physio when needed.

Best wishes to you all
Diane

[ForumMember]

Hi all - didn't get round to ringing th BCN but will do today ! I am awful though - I keep putting things off

Carole - It was only when being discharged from hospital that I learnt that I had a tissue expander in as the surgeon told me that I would be having an implant. I asked why and also the BCN but nobody knew. I was told this could stay in forever ! not sure. I want the port removing anyway as it hurts when I have my bra on. They also had in my hospital notes that I had had a right mastectomy !! it was my left !! this was the handwritten theatre notes. The nurse said are you sure? let me have a look? she had only about an hour before taken 5 drains from the left side of my body !!

They won't be able to do anything until next year as I had radiotherapy but BCN said they could take off the "dog ear " flap on my back because that radiotherapy didn't touch there. So looking forward to that.

Love Liz xx

[Guest user]

Hi Judy

Thanks for explaining, I appreciate your response. Funny but I was thinking myself that I should try stretching and light exercise to see if that eases the tightness. Yesterday I went for Dru Yoga at my local support centre and am going to go weekly and see if that helps. Also have bought a float so I can get back in the pool and at least use my legs and again hopefully strengthen the back as trying to swim using my arms causes a lot of swelling and pain.

My reason for regretting this option is due to the nerve pain that I experience. The tightness as you say is something that I can see me getting used to and some days it is better than others.

Janice, I got some lovely very comfy but supportive non-wired bras at M & S.

Ann, you are in the very early days of recovery from what has been a major operation, you need to take time for yourself to recover. I would say do NOT weight bear at all on your arm of the affected side, and please do not worry too much about complications from this op, although I have a few complications, I do know of many women who have no problems - I hope that you fall into the no complications category. Make sure you do your exercises and gently massage both the recon and the back scar with a good moisturiser once your scars have healed. Wear a supportive bra in bed also. Good luck darlin.

Lizzie, I have not heard of anyone having both the ld recon and then an expander in the same side. One of my friends had tissue expander in and is now fully inflated and goes into hossy next week to have both the port and the temp implant removed and replaced with permanent implant. If I were you I would call your BCN and ask when not if they are removing the port.

Take care everyone, luvnstuff Carole xx

[Guest user]

Hi Ann,

It's early days yet so don't worry and hopefully one day you'll be sure you did the right thing. You will probably find other strange things but they do tend to settle down with time. I never had the lump under my arm that you and other people have referred to, so can't say on that score, but my back was sunken originally and that has filled out again with time. When I had to go to the doctor recently about something else, my boob looks so natural that he forgot I have had a reconstruction!

Liz, good luck with your phone call to the breast nurse today, I hope all is OK.

Love, Judy x

[ForumMember]

Hi again - just found this thread again.

Judy - you have been through it haven't you but as you say you would do it all again. I would because I like to have my cleavage. I wonder why some days are worse than others though. You just think that it's getting easer and it all starts again.

I was told I would always have the lump under the arm where the muscle was threaded through. Mine looks large these last few days and I am sure I have a swelling. Have to phone breast nurse tomorrow and will get her to check me out.

I have a tissue expander in and am happy with the shape and wastold I could keep that in instead of an implant but the port sticks out under my boob and is in the way of my bra so would like the port removing if thats possible. Have not been able to lie on my left side in bed for a couple of weeks as it hurst but I know it will get better - I think !!

Off to bed.

Love to you all.

Liz xx

[Janice]

I had my LD reconstruction 2 years ago and I was surprised at how little pain there was with the op. I found immediately afterwards my biggest problem was with seroma, had to go back 6 times at weekly intervals to have my back drained.

It does get more comfortable with time, either that or I've just got use to it, still get the tight feeling across my back, some days worse than others and there are only certain bras I can wear, namely none wire ones which are not that easy to find, the thickness under your arm does improve.

I haven't got much strength in that side and find it hard pulling the hand brake on when driving for example.

If I could go back I would still make the same decision as overall I am pleased with the result.

Best wishes.

Jan

[Guest user]

Hi Ladies

I have just returned home yesterday after having a mastectomy right breast with immediate ld reconstruction. I feel fine but keep worrying that I made the wrong decision. I wasn't worried about the breast or scar but didn't realise that I would have a sunken area on my bac., I also have quite a lump under my arm where the muscle is thread through, will any of this return to normal or is this the best I can expect?.

I was originally going to go for the inflater but was told that they still would need to take tissue and skin from somewhere else as the skin would be too thin on it's own. I thought that this was as good an option but more immediate than having the inflater one replaced for an implant later. I would just like some reassurance that I made the right decision. The breast looks good I am a bit bruised, sore and stiff but hopefully with exercise and time this will be ok.

Do you have any tips or suggestions for me.

Thanks

Ann

xxx

[Guest user]

Hi to all of you,

Firstly I do agree with Liz, that chemo and radio do seem to aggravate a reconstruction. The problem I have had, as explained to me, is that I have formed a lot of connective tissue. this has stuck to my ribs for example and I had the LD on my left side and my ribcage on that side was being pulled so it was 2" lower than my other side. It can also stick to the bladder and bowel although it hasn't in my case. As the LD on my left hand side has now switched off and isn't working, other muscles have become dominant. Muscles work in groups and if one muscle weakens then the other muscle takes over, but this is what causes the pain because it's not being balanced. I hope that makes sense?!

In the early stages swimming is very good at helping to ease that crushing tighteness. I have now found Pilates to be really good and as well as this I have been given exercises to do at home, one of which is lat pull downs using a stretchy rubber strap hooked over a door. But I would recommend getting advice on how to do this properly or you might damage yourself. The help is out there, but it seems that if you don't ask you don;t get.

I posted my enquiry originally because I was interested to see whether my experience was very common and I suspect that it's not and that we are probably in the minority. I certainly know women who have had very few problems with their reconstruction's although tightness does seem to be the main long term complaint, and that's something you do get used to living with.

A 1% minority doesn't seem a lot unless you're one of them, does it Carole! I suppose they don't want to scare women off when the chances are that everything will be OK.

I would never try to influence anyone's decision on whether to have this done, it's a very personal thing, but given the knowledge I now have, and all the problems along the way, on balance it's still worth it to me.

Enjoy your weekend everyone.

Judy x

[ForumMember]

Hi Carole - it was 10 months since my op so the physio said she could do more with me as there was no danger of upsetting anything . She really worked wonders with me and I know that if I keep up the massage it will help. OH is supposed to massage the area and move the flesh around. Didn't do it for a couple of week and it tightened up again but have had it done a couple of times this week.

The physio said about working through the layers - what she meant was the different layers underneath the skin. Flesh and muscle.

Liz xx

[Guest user]

Hi Ladies

Judy I hope that you are getting some relief from the pain you have, I wanted to ask you which organs they say are glued together, that sounds pretty damned awful and I wonder what other complications that has come your way due to that, you also said that your back is out of balance, can I ask what you mean there?

Prior to my op I have had a sore back, lower back pain as my hips are slightly out of line due to a slight difference in leg length, I just hope after hearing of your problems that I am not going to have further pain in my back in the future.

Also to both Judy and Liz, you speak of physio peeling away layers, what do you mean and are the physio and massage things that you can do on your own when your time with the physio is done? I would love to be able to walk and not feel the pain from the crushing tightness. I am also keen to hear how soon after your op you started physio, I am 6 months post op now and keen to do anything that would help.

Snow White, if you search on here for lat dorsi or maybe back flap then you will meet many women who are delighted with the ld recon and have little or no complications. As for the docs not being able to tell who will have complications, it is really a lottery isn't it, they don't have a crystal ball and neither do we. You take your chances and I hope that your luck is in!!! xx

I asked why I was not warned about the nerve damage and also about the ld muscle pulling away from the chest wall muscle, response was that for both their is only a 1% chance of occurrance so they do not feel it important to warn us. E.g. in North East Scotland at a major hospital I am one of 2 women with nerve damage following Lat dorsi recon so that is a very low chance overall. I can understand them not warning us due to the low % but it is damned painful and can be a lifelong complication - fingers crossed that its not that for me! I have just been unlucky I guess, but constantly tell myself that it could be much worse, at least it is not a recurrance of cancer.

Liz, don't be scared of checking your arm, its leaving things till later that makes it worse. I at least don't have to wear a sleeve as its been caught early and I am confident that doing the additional exercises and the massage which is not a problem will keep it down. I was really pissed off when I thought it was lympho and went thru a couple of weeks of feeling really down, my OH pushed for me to be seen by lympho nurse and when she confirmed I was early stage I just thought ok, I can manage this and work on it so I dont get the sleeve! It's actually a relief now to know it is lympho and not cancer in my arm or my back!! and I am so glad I went to see about it. Good luck to you girlxx.

Take care everyone, luvnhugs Carolexxx

[ForumMember]

Yes it will eventually. Mine is doing it gradually and taking it's time but a lot better than after op.

My friend had mastectomy a year last October and is having ld reconstruction at the end of June. I will let you know how she finds it. i think the chemo and the rads aggravated it so if you have had your mastectomy and treatment it may not be as bad. As I said before I would go through it again as when I have my clothes on you can't tell and when undressed the reconstruction one is harder and higher than other (only a little higher). May have nipple put on but not sure yet.

Please don't be put off. I hope others will post with their experiences.

Liz xx

[Guest user]

yeah - it is the devil and the deep blue sea isn't it - I really appreciate what you have said about your experience Carole, and Liz and Judy, for me it does help to know these things, and please don't feel worried that you might have put me off Judy - it is so important to be prepared, it is a big risk and people should know the facts. I dare say my PS will say that complications are rare, or a minority of cases, or something like that - although what one person counts as something to be got through another (and this is probably me) counts as totally unbearable - so he may not mention things he considers not significant which to me are very significant. But it makes me angry they don't prepare you for what might actually happen to you. One thing they can't do is guarantee no complications, and they can't know who will have them and who won't so they should explain these facts. It is a minefield. We have paid a very high price for our life and yes, you are so right, I have found, am finding, that it is a pain every day to live in this mutilated body, and a recon is a very tempting thought, I so envy you - but right now I am strong and well and fit; do I want to pay the price of losing that? I have another appointment end of June and I will definitely ask about physiotherapy after. Meantime, keep up the physio and exercises and I hope and pray the difficulties will settle down, and soon. I am wondering about your back muscle still thinking it is in the back, will that go away eventually?

[Guest user]

Hi all,

It seems I might have started a real talking point here!

Liz, thanks for your comment, and yes it's been tough at times but I don't think that I've had anymore to cope with than you have, and Carole - from what you've described I think you're made of very strong stuff - you're really going through a rough time - hang on in there. I was never offered physio, so you might need to ask for it.

Snowwhite, I was warned that the recovery would be slow, and that my new breast would never be quite the same as my own. It was a few years ago now, but I do remember after my consultant had told me what to expect (and he was very thorough) that it all sounded very frightening. But my reconstructed breast looks very similar to my own and even in a bikini you would find it hard to tell them apart - until I lie down that is, my own breast flops to the side and my reconstructed breast is very upright! So from the point of view of feeling feminine & 'normal' it was and is very important to me to have a breast, which is why I would do it again.

I think that a reconstruction is a complex and major operation that is bound to have complications attached to it. I don't think there is enough awareness of the possible long term problems with the back and I think that physiotherapy for the back should be offered as standard once all the wounds are healed. I only had physio for having my lymph nodes removed, which isn't the same.

I hope this helps you with your decision, which is a difficult one, but please don't let it put you off as not everyone has these problems and I know women, who although they might still have a tight back several years on, have had no other problems and would definately do it again.

Take care.

Judy x

[ForumMember]

Hi again

I forgot until you mentioned it - I wasn't told anything about the side effects of this reconstruction. I was adamant I was having a mastectomy as I just wanted rid of the cancer.My surgeon does a lot of reconstructions and was urging me to have one. When he went out of the room I asked the BCN how did they do the reconstruction. when she explained that they do it through the nipple and how they bring the muscle up and around to your breast I really thought aboutit and yes that was for me.

At no point at all was I counselled about it and told how it would feel, what I would be able to do etc. I had 5 drains in and fluid was still coming out when the took them out at 7 days due to the risk of infection if left in any longer. So I had a large "hot water bottle" on my back for many, many weeks. My body eventually started to deal with this. It was only when I come back home and was lying in bed I realised that the back muscle still thought it was in my back and was acting accordingly. Nobody told me this would happen. When I have told the BCN that it still hurts etc all she says is "yes it will take time " but how long ????

I am thinking now it will be another year and then I won't get disappointed.

Carole I will check my arm after but can't bring myself to look at the moment just in case it is and its another thing to deal with. Wish I could just be normal !!

Snowwhite Hope this helps in a way - just be prepared. A friend of a friend had this done - she is in her 30's and she had no problems. A lady I work with had it and she has difficulty driving and when she is shopping she finds it hard getting stuff out of the trolley.

Let us know what you decide.

Love to you all
Liz xx

[Guest user]

Hi Ladies

Another ld woman here. I had mine done Dec 2007 and had slight seroma for a few months, have nerve damage due to surgeon going in too deep as he put it. Am 5 feet size 12 and was not warned about the possibility of nerve damage which now causes me pain in my bum, thigh, hip and round to my privates, better than it was after the op but still on gabapentin, dihydrocodeine and paracetamol to control it.

Also have the tight, crushing feeling which gets even worse with the slightest amount of walking or other activities i.e. housework, driving and so on. I was told I may be left with some weakness on affected side and it would take 1 to 2 years to recover from the op recently yet before the op they had said 6 to 12 months. I do have weakness, can't carry anything heavy or open heavy doors even the car door is a job for me to close when I get in the car so no chance of tennis for me or rock climbing ha ha!!. I have a lumpy area in my armpit but thought that was normal and now have early stage lymphodoema in my back, underarm and arm despite doing my exercises. Think that came about cos my back drain was in 7 days pumping out loads of fluid and it was infected when they removed it.

Also at 6 weeks post op the recon was badly dented in 3 places and that has worsened looks pretty awful and turns out that I now need another op to reattach the ld flap to the chest wall muscle as it appears to have pulled away. Have not been sent for physio, I went private, should I maybe ask about that or will they just leave it till after my next op which will be Sept or Oct this year for the repair.

You would do it all again Liz and Judy, hats off to you both you must be made of stronger stuff than I am. Me, no flippin chance I know we are lucky to have had the chance of reconstruction and it must be so hard to have the mastectomy and no reconstruction. That would bring its own problems of acceptance, feminity issues, etc but if I knew then what I know now I would have gone the expander route or mast only as I am so fed up of the constant pain I am in and the inability to "get back to normal" I was a busy bee before this and feel so lazy now as everything is done in the slow lane.

Liz you mentioned pain in your affected arm, check if it is swollen at all as I get pain with the lympho, not bad, more a deep dull ache and arm gets very tired and feels heavy.

Take care all of you and Snow White, good luck to you darlin xx
luvnhugs Carole xxx

[Guest user]

hello all - I'm sorry to butt in on your thread, but it interests me because I am investigating reconstruction at the moment, and LD with implant is a possibility - I have met PS once. When I asked about possible complications with taking a muscle from the back he said that unless I am a cross-country skier I shouldn't notice the difference without the muscle in my back. This seems to be a pat answer they all come out with, judging by what I am hearing. The risks and complications he mentioned were: anaesthesia risks, possibility of seroma, possibility of infection. From what you're saying I realise he has not explained the implications of those risks (I thought they would resolve quite straightforwardly, but evidently not always), and also, he did not mention anything at all about the sort of problems you have had. Were you warned about all this? - I see that you still don't regret your recon in spite of it all; but I might, and would at any rate at least like to be warned beforehand of what can happen so if I go for it, I go with eyes open, and with informed consent, not uninformed consent.

[ForumMember]

Gosh - you have been through it - didn't realise.

That sounds awful that they put chemo drugs into your back. My physio said about peeling away the layers and can understand what she meant. I had an indentation under my arm where the muscles was brought through and the physio manipulating that and it's gone.

Yesterday I noticed when I stretched out my arm to go on the escalator (surgery side) I have an awful pain from elbow upwards and I was wondering whether this was cording that I have heard about. Will carry on with the exercises and I am seeing the BCN next week so will ask about it.

Take care

Liz xx

[Guest user]

Thank you all for your comments, it's been interesting to hear that I'm not alone with my problem. From reading your replies and talking to my sports therapist I would encourage anyone with these problems to push for physiotherapy if your back is very tight.

My back was reluctant to heal after my reconstruction and produced a lot of fluid. They delayed the start of my chemo as to give my back more tiime to heal. 7 months after my op I noticed my back was so full again that it looked like a waterbed. I went back to see my consultant who told me that I had obviously done something to the muscle and it had torn and my back was full of blood (sorry!). However I don't think this was the case, as it had never really healed properly. I then had to have chemo drugs injected into my back to aggravate the muscle and encourage healing. These were left in place for 2 weeks then drawn off again. I was then told to be very careful for several weeks to allow it to heal. So it was a full year after my op before I was even allowed to do much exercise, although I used to go swimming. I think that is why things got so bad.

In the early years after my reconstruction I was told that the tightness was to be expected and therefore in the end I stopped mentioning it. I have always kept very active going swimming, for long walks etc but gradually my back problems put a stop to all that. My neck was really painful if I went swimming anc causes me very bad headaches. Walking long distances became more of a problem as my hip was so painful and I developed a limp. Sitting at my desk at work caused me terrible low back pain and last summer when we did a garden makeover on our garden, it totally seized up. I have been to all manner of different physiotherapists, they either made it worse, I had to take 2 weeks off work at one point, or had no effect at all.

Because it's been over 6 years since my op things had got very bad, but gradually after several weeks I am now seeing a big improvement, and my therapist also talks about peeling awway the layers. It's a pianful process and at the moment I don't know how long it will take or what the longer term holds. But it's encouraging to hear from other with similar problems, so I will remain positive and hopeful!

Take care all of you.

Judy x

ps. I agree with Liz, despite all of this I would still opt for a reconstruction in the same circumstances.

[ForumMember]

Hi All - I put 2 stone on with the chemo and struggling to lose it. On herceptin and think this may have something to do with it !!

So glad I'm not on my own on the toilet front !

Nice evening here in Lancashire and hubby going out so got myself a bottle of wine - just a couple of glasses !

Naomifel - I thought it best to wait until finish chemo then knew exactly what I was dealing with.

Take care

Much love

Liz xx

[Guest user]

hi i had these problems as well couldnt even put my hand on hip let alone wipe my bum good job left handed...... i saw my gp and he referred me. i have had two seesions can feel a slight diff. i had ld in dec and started chemo march. i have had 4 and going to stop now as had enough and was told 4 or 6 in beginning. so again now hope i can do more exercise to loose weight i have gained.
have a gt eve all its lovely and warm in bedfordshire today.
julie

[naomifel]

Thanks, Liz, Jackie. I much prefer the idea of phoning a physiotherapist up myself - and them checking with the BCN themselves but will wait until I've finished chemo - hopefully in September. The chemo does tend to make it worse. Perhaps in September I will take up swimming again. Then I might lose the extra weight I've put on too.

Thanks again.

P.S. Liz, as for being crude or too much info, I know exactly what you mean!

[Guest user]

Hi

Physio has certainly made a huge difference to me. I have been having the LD site massaged/manipulated to loosen up the scar and layers. I had started getting lower back ache, particularly if I went out on the back of my OH's motorbike, my physiotherapist told me to continue doing whatever made it ache to strengthen the muscles that are now doing the work of the removed LD muscle.

I still tighten up now and again but find the more active I am the less it happens.

Jackie x

[ForumMember]

Hi Naz

I phoned up the physiotherapist at the hospital and asked to be seen. I waited until I finished chemo as every chemo I had seemed to aggravate the surgery and then the radiotherapy everything tightened up. So having done all that I thought its time to get this sorted as (to be crude and maybe too much info) I couldn't even wipe my bottom properly !!!!

The physio had to check with the BCN to see if I could be seen without a referral but it was okay. I have never bothered anybody since my op, not even the BCN but would have if i had to.

The physio saw me once a week for a few weeks then realised she needed to do more intensive physio. she said it's like peeling an onion - you have to get through the different layers. The last few sessions she really moved the skin and it made a world of difference. I have full movement of arms albeit I still have some pulling at the top of my arm and in back but even that comes and goes.

At least I can walk now without it all tightening up.

The physio I saw was specifically for breast cancer surgery and she was really lovely.

Hope you get sorted.

Liz xxx

[naomifel]

Hiya, just want to thank you both - this is all really helpful stuff. I'm about 6 months post surgery (mast & LD reconstruction) and currently going through chemo. My back is really tight too and its reassuring to know that there is something that can be done to relieve it a little. Liz, did you ask to be referred to the physiotherapist? And, if so, who did you ask - your BCN or your GP? I don't like to ask but if there is something that can be done I'd like some advice at least.

Thanks again

Naz

[ForumMember]

After the physio had stretched the skin I felt much better and was seeing her twice a week. Since stopping physio a couple of weeks ago it has tightened up again so I realised that it needs to be carried on so have got OH to do it the last couple of night. Of course its not the same - they don't have the touch do they ! But better than nothing as I can't reach.

The physio said she could do more for me as it's been 10 months (that's when I first saw her as it's now a year since op) because everything had settled and she wasn't worried about the reconstruction moving. She also stretched my skin across my chest which loosened the tightness of the scar where the lymph nodes were taken. My reconstruction still feels very strange - and it's a strange way of describing it but - wait for it - I feel that somebody has lifted my skin and shoved a load of carrier bags inside !!! that's the only way I can describe it - not that that's ever happened.

My skin is also numb and if you get an itch you can scratch but it doesn't feel like you are doing anything. But a friend described that at her caesarian scar so it could be normal for anybody with a big op.

I had a lot of fluid after my op and it took months to go as surgeon wouldn't drain it because I was on chemo and the risk of infection. I have a small lump which I feel as though the fluid has crystallised but not sure. I haven't seen by surgeon since last July and only the once since surgery. I am due to see him in September and hopefully he will arrange to take the "dog ear" off my back and I am hoping that will help.

Having been through what we have I would do the same again.

Liz xx

[Guest user]

Hi Liz,

Thanks for your reply and it sounds as though my sports therapist is doing the same thing by trying to stretch out all the tissue under the skin, it gets very vigorous but I do think it's beginning to work. It's going to be a long job he says, because it's been like this for so long. It sounds as though once cured, it's something you have to keep stretching by exercise or having sttetched for you otherwise it will tighten up again. I don't get the sensation you describe though - even after so long the skin is numb. The only thing I get is intense itching deep inside which I have to rub really hard to stop.

Judya

[ForumMember]

Hi

I had my reconstruction a year ago but I know what you mean about the tightness in your back. I have been seeing the physiotherapist and she has actually loosened it by simple movement of the skin and flesh underneath. Gently at first but then a bit more vigorous. She has now dischargedme but I have got OH to do it as if I don't it tightens up again. Do you get the sensation as though loads of needles are being pressed into your skin?

Liz xx

[Guest user]

Hi, I was wondering whether anyone else has experienced problems with their back, several years after a reconstruction using the Latissmus Dorsi muscle.

I had my reconstruction in January 2002 and my back has always been very stiff and tight. In the last 18 months I developed hip pain, lower back pain and neck & shoulder pain, all on the opposite side to my reconstruction. After numerous scans, X-rays, visiting different consultants, physiotherapy, accupuncture and finally pilates to try and loosen things up, I was referred to a sports therapist. He has diagnosed my reconstruction as being the cause of the problem. This might just be the way that my body has responded to it and not a general problem, but my latissimus dorsi no longer works or responds to any form of excercise or electrical impulse. I have also developed a lot of connective tissue that has apparently 'glued' other organs together and my back is out of balance, causing all these problems.

I would love to hear whether anyone else has had this experience and if so, how it was finally treated or whether they have been unable to treat it.

Judya