Back Problems following LD Reconstruction

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1

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

2

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

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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

4

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

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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

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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

7

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

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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!

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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

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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

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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.

12

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

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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.

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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

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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

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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

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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?

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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

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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

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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