After LD flap recon questions

Hi
I had a mastectomy and immediate LD flap reconstruction on 23 July.I am pleased with the results apart from the fact that my new boob contracts significantly when I use my arm for certain things,pushing up out a chair,wiping my bum (sorry!) etc.
I am terrified people can see my performing boob!
I know some ladies on here have the same and but others don’t .I believe some centres cut the nerves to the flap at operation to stop this,however I met a lady from the same hospital as me last week and she has not got this problem.
Does anyone have any info on whether anything can be done? One Dr (registrar not Consultant) I saw said they could use Botox but another ladys Dr said they haven’t heard of this.
Is it only a problem if the surgeon does not cut the nerves?

I am grateful for any comments or info,I have an appt with my consultant in 2 weeks and want to be “informed”

Dot
xxx

Hi Dot,
Mine is still performing well too!
I have a drs appt on Wed, so I thought I would ask if a muscle relaxant would help. At night mine is still very active, regardless of my arm position, and how relaxed I am. I am now finding that my back is equally uncomfortable. I feel like I have a very tight partial corset from the back scar down to my waist. I am assuming that this is where they removed the LD muscle from. It feels a bit like scar tissue, but hopefully is just a temporary thing.
Let us know how you get on,
Judy

Hi Judy,

It seems yours is a lot worse than mine! At least when I am at rest it rests too!
My back is very tight now too and round towards the side.I have a swelling on my side which i thought was a seroma but it feels more solid now!
Make it very clear when you see the Dr that you even have problems at rest as I am sure thats not right.I know they sort of expect it when you are using the muscle as it would have been.But surely not at rest?
My next appt is 2 weeks,
Good luck
Dot
x

Hello all

I have not posted for a while but when I read about women with contracting breasts I can empathise and identify with you.

It is a long story. My original mastectomy and LD reconstruction was in February 2006. I got very upset. I was in a great deal of pain . In July 2007 I had the tendon cut under the arm. That helped the pain but did not stop the contractions. I felt I was very hard work and I am not sure that my surgeon believed me though it was very obvious visually.

A second opinion was much more supportive. He had cut the nerve7/8 times and gave me the encouragement I needed to have it done. This was in May this year. Things are very much better. I can now push a supermarket trolley with out the drag across my chest and I can go for a walk with out the uncomfortable feeling across my body.

I now have some very good days when I hardly notice the new breast. Sometimes I am still sore if I have done too much on the computer or knitting, which I have started again!

I hope you doctors will understand the distress the contractions cause. It is a recognised problem but not all surgeons have yet dealt with it themselves.

All the very best,

Sally ann

ps I tried to find a place in London that offered Botox injections for this situation. I had no luck though it is something my second surgeon mentioned though he did not know where you could get it offered!

Hi Dot
I had a good long chat with my Dr yesterday, about the twitching, back problems, and lack of arm movement. She is doing me a referral for my arm for physio, but I may have to wait a while. She says that I just have to be very patient (not a quality of mine!) and let myself heal. When I told her that I have been walking for an hour and a half a day, and swimming 20 lengths, she was horrified. She kept stressing that I had had ‘major, major surgery’ and needed to take it easy. I thought I was helping, by trying to get fit, and help myself to sleep. Sleep has been a pain again lately, despite the anti depressants. She has doubled the dosage to see if that works. Perhaps the NHS need to provide giant hammers! That’s the only way I am going to be able to get more than 3 or 4 hours a night.
She gave me a sick note for another month. I know that I am nowhere near ready to go back to work yet. I went into school with it this morning, which felt very strange. I haven’t been back since the end of June, before I had a WLE. Everyone was really kind and welcoming, but I was on edge a bit. Some of the children in the Unit like to give big bear hugs, if they haven’t seen you for a while, and I certainly wasn’t up for that! Luckily one of the staff had warned them that I had a bad back, so they were very considerate, which was a relief!
I hope all goes well with your next appt. I have to wait until December for mine…need to practise my patience again!
Judy

Judy
I just wanted to say physio made such a big difference to me following bi-lat LD recon. I havnt had any twitching, but one of my back scars fixed itself firmly to my back and my arm movement wasn’t brilliant. He got me moving and was able to give re-assurance and suggestions, as well as some relaxing massage. He offered accupuncture too but I wasnt keen.

I was lucky to have therapy through the in-house physio at work so didnt have to wait. Hope you dont have to be patient for too long.

Jackie

Hi Jacqui
Did you have a feeling down your back where the muscle was removed, that it was all stuck? My side and back feel like a suit of armour. How was the massage? I have very little feeling in part of my back, and am quite wary about being touched. When my OH puts Bio oil on the back scar, it sends all sorts of unpleasant sensations down my back! My DR did say though that massage might help. Hope I don’t have to wait for too long to get the physio
Judy

Hi Judy

It was only the scar area that felt it was stuck, if I stretched it felt like a very tight band. The area where the muscle was taken felt firm to touch at first but is wearing off now. The whole area on my back, down to my waist and round the sides is numb, but at the same time it is tender around the edges, like a bad bruise and I am wary if anyone goes to touch it, especially round my waist. If I am laying on my side in bed i cannot tolerate my OH putting his arm over me.

I was told by my physio to massage the area daily and the strange sensations are part of the damage nerves repairing and it was a good thing to do and it will wear off with time. The only trouble with massage is laying on my front. To free up the scar my physio did very small but firm circular movements for about 15 minutes on each scar and I would do the same with bio oil too. It has made a huge difference. I do still get some shooting pains in the breast area, not as sharp as at first. I spilt a cup of tea over myself once because it was so sharp and severe, which made my daughter spill hers too because I made her jump, the dog leapt up too. It was chaos for a minute!!!

Maybe pester your Dr if you dont hear about phsio soon.
Jackie.

Thanks Jackie for the info. I can’t imagine lying on my front at the moment. I am just starting to very cautiously lie on my side, but can only do it for about 10 mins, before it becomes too uincomfortable. Perhaps I need a massage table with a hole cut out for my boob!
Judy

Hello all

Here’s my two cents …

My muscle conttraction is significant and is not going to go away with swimming, physio or anything else except surgery and in November a plastic surgeon (out of my area) is going to attend to my tendon and divide the thoracordorsyl nerve. I got a second opinion from a third area of the country this week and was encouraged that this is the right thing to do and should provide relief from all the blasted pulling and should allow the implant to move from my armpit to my chest. At the moment the LD flap is pulling so hard and tight that it is lateralising the implant. Having had the LD flap has disabled me in a way I could never have anticipated and I could not recommend it to anyone who has an alternative.

I had LD recon March 2004 and my boob did have a life of it’s own for quite some time - even now over 4 yrs later it can still have the occasional movement. My plastic surgeon said to leave it alone,and because the muscle wasn’t being used, it would eventually stop moving about, which it has. The scar on my back can still sometimes feel quite tight and my way of making it feel looser is to stand under a nice hot shower and stretch gently until it feels as though it has “freed off”. I still don’t do any vacuuming as I find back aches a lot if I try it (luckily hubby doesn’t mind doing it) and I also find it sore but not painful to do things that involve wiping or circular motion such as cleaning the windows etc. It will take time for everything to settle down, after all it is a major operation. My back and my armpit are both still pretty numb in places but I have got used to it now. I don’t know how you feel about giving it a little more time to let everything settle down but you could always ask your consultant if he thinks this would be an option. Best of luck anyway!

Hi GIRLS IM SUE i only last wk had recon feeling good at the mo but can you tell me how long it is before the swelling goes down as mine is hard at the moment Im glad i had it done thou

hi sue i was surprised that it takes while for the breast to feel less hard but it does gradually.i am nearly 3 months post op and was feeling quite comfy until i had myexpander filled with about 100 mls of saline yesterday.the cons gave me the choice of leaving it as it was or filling.not sure if it was the best decision. go back in 2 weeks but may not opt for any more of the same!!! it feels better when the stitches are out and you can start to massage the scar and get in the shower properly. be patient which is easier said than done and keep up the positive vibe.cant remember when i noticed it was less swollen prob about6 weeks after. no one really tells you what to expect or how it can feel. i wish id come on here more beforehand to get more info.
Doreen

Hi Ladies

Have arranged to have the reconstruction in November. Looking at this post its making me even more nervous. Despite the problems are you all glad you had it done? I had mastectomy in May 2006 and have only just got around to talking about recon. I just want to see some cleavage instead of the plastic stick on boob I have at the moment. Is it worth it???

Anniemay

Rosebud454,

I have also been reading these threads Anniemay. I also had my mast in 2006 and was hoping for recon, and like you the comments are a worry. I was recommended ld as not enough tummy. Its a v hard decision, but I want my cleavage back, not that i ever showed it much.
Surely it must be worth it, so many of you have had it done?

Rosie x

Hello Ladies

All I can say is I am glad I have had it done and I am pleased with my results…very pleased.

I have met ladies who have had problems, and as with all surgery, there are always risks. I view my recon as a complete success and only very minor problems (dont even consider them as problems actually) which were worth it for the final result.

I would do it again if I had to. Hope that helps a little, though it is a hard decision, I know.

Jackie x

following on from my comments above, yes I am so pleased I had recon done, although I know I was extremely lucky not to have had any great problems post-surgery. Psychologically it made me feel a whole different person, much, much happier. I hated the sight of my chest with only one boob. After the recon, I kept peeping at it because I was convinced I would wake up one morning and it would have disappeared! I had a new nipple constructed in 2005 and then a tatoo and to me the whole thing looks just fab (in fact I cried like a baby first time I saw the new nipple). It is a huge step to take and has to be a personal choice, but when the surgery was all finished it kind of made me think that I had beaten the cancer, it wasn’t going to ruin my life any longer. Whatever you decide, hope everything goes well

Rosie/Anniemay

So many of us have it done? So many of us are desperate to get away from external protheses. I now have an internal one, an implant is really an internal prosthesis.

It is good that many ladies are pleased with their results; I’d like to know how it compares with their original expectations.

I would say this is definitely better than an absence but then I thought ANYTHING would be better than an absence after over a year. The surgeon who will divide my nerve etc. has had to do this many times so perhaps it’s not as rare as we think. Perhaps also ladies just put up with it and think that’s the price of an LD flap.

If you read all the literature on this op you are told that there are very few things you should be unable to do afterwards but I find myself unable to do many things and to me that is unacceptable. The nerve surgeon also thinks we should not be deprived of ANY activities but then he also said that had I been under him for the LD flap he would have done it differently to my breast surgeon, meaning I suppose that I wouldn’t be in this state now.

I can honestly say that despite no longer having an “absence”, that given the time and chance again I would travel the length and breadth of the country to have a different op favouring an SGAP (for lack of tummy).
Surgeons favour the LD flap for all the usual reasons, more of them can do it, length of op, recovery time, risks etc. but it has still turned out to be a high price for me in terms of disability and needing at least one more op, probably two.

Hindsight is a wonderful thing. A skilled, and upfront, surgeon is also wonderful and some ladies have them.

Best of luck.

Hi Ladies,
Yes there are times when I do regret my jumping boob!
But I really am grateful to having one, despite being on my 3rd left breast implant because of problems. When I look back and reflect on the 6 months I had without a permanant prothesis, I’d honestly say I was " unhinged"
I really hated taking off my plastic “tweeny boob” as my Grandson named it!
It wriggled, and tickled and wriggled inside!!! Not as bad as the “comfy” thing they give you post-op, that escaped one day and I looked like Mother Christmas, cotton wool and wadding resembling an alternative to the Festive Season!!!
Seriously, each to there own - but I really don’t regret the reconstruction at all. My surgeon said she wasn’t a miracle worker - but with a bra and clothes on, nobody would know, and to be fair, thats where I am. No regrets, again despite the problems, but for me it was important I had something permamanet,
So go for it!
Dalli

I’m really interested in this thread because I am seeing a plastic surgeon at East Grinstead on Wednesday. Keep the information coming, ladies, it all helps tremendously!

Bubs XX