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worse 5 months after bilat ld recon

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Re: worse 5 months after bilat ld recon

Just had a look at Daily Mail online and then MHRA (the UK regulatory site for medicines and devices) - surgeons were advised to stop using this particular implant over a year ago (French, substandard). So there is no chance you will be given that one.

Yes it looks like there was a problem with one make of implant - but it also looks like that unfortunately a French actress has had a rare type of breast cancer and also had that implant - no proof of a link. S**t happens!

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Re: worse 5 months after bilat ld recon

Don't believe anything you read in the papers - especially the Daily Mail.

I know that they almost always misinterpret drug studies - e.g. take a minor thing that the study author says requires more investigation and then give it in the article as a fact and ignore the actual key study results.

So no doubt the leaky implants thing is the same.

Sue

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Re: worse 5 months after bilat ld recon

I am due to have a sillicone implant next Thurs,after a mastectomy 2 years ago,but I am very concerned after reading an article on leaking implants in Todays Daily Mail (Sat 3 Dec 2011),now wondering should I go ahead with the op.
Be very grateful for any views or advice on the subject

Sandyb
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Re: worse 5 months after bilat ld recon

Thanks Debbiedoodah,

Its good to hear of somebody that has got over the tightness thing....it really gives me hope that this is a temporary thing. Im seeing my surgeon tomorrow to discuss my next op (the exchange from expanders to sillicone implants.) Hopefully all this will help towards getting rid of the tightness.
Have a great Christmas and thanks again for your advice.
Sandyb.

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Re: worse 5 months after bilat ld recon

Hi Sandy!,
I know exactly what ur talking about! I had this feeling of steel rods in my chest after mastectomy and also following my recent reconstruction. The steel rod thing also was felt in my arm pit periodically. I think a lot of it is to do with fluid collection and swelling and both times subsided. I feel sure in time this will disappear for u.

Love debbie x

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Re: worse 5 months after bilat ld recon

Hi,
I had this problem with a huge over hang under my arm after mastectomy which liked to hang over my bra causing discomfort. I called it my pillow case corner! I recently had a reconstruction done using an expandable implant and the plastic surgeon corrected it for me with reasonable results.

Love Debbie x

Sandyb
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Re: worse 5 months after bilat ld recon

Hello Ladies,
im new to this site. Im going through exactly the same as you. I had a bilateral mastectomy with Ld flap recon on 28th August. Since then I feel as if I have a concrete corset on with 2 iron rods sticking into my chest. Im very stressed out about this. Like you, my surgeon says he has never come across this before (but strangely enough I happened to meet another of his patients that is going through the same tightness and was told the same!!) Maybe they hope its all in our minds and will eventually go away.
With regards to the antidepressants, I was referred to pain management that explained they now sometimes prescribe certain antidepressant drugs as pain relief...especially if they think the pain is nerve related. I am on 10mgs amitriptyline which I have to say has almost got rid of the terrible pain I was experiencing with the tightness (it has not helped the tightness though)
Im now taking them every other day and am going to slowly wean myself off of them over the next couple of weeks.
Anyway, back to the tightness!! What I cant understand is why we are all being told by our surgeons they have never heard of this problem before when there are clearly so many people suffering with the same thing. Its really worrying. I cant imagine living like this for the rest of my life.Is there anybody out there that has had this op, suffered the tightness thing then been cured? Please let me know if you are out there....I need to have some hope that this will all come to a happy ending one day. Best wishes, Sandyb

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Re: worse 5 months after bilat ld recon

Hi Snowangel,
My specialist breast physio is happy for my OH to carry out massage. She says that it doesn't matter what movements he uses, as long as he doesn't hurt too much. He has got my scar moving a bit-it's making a foul squelchy sound now...yuck! However I am still firmly stuck below the scar, so there hasn't been any impact on my movement, discomfort etc yet. It would be so nice to have a big yawn and not feel the restrictions round my ribs! The physio is hoping to come in with me to see the consultant on Thursday, and help me to get a solution. She also wants to look at the op notes to see exactly what he has done down my ribs. She hasn't given me any specific exercises, but says to carry on with hospital exercises. I find walking my fingers up the wall to the front and side the most difficult, so do these regularly and try to swim to retain my range of movement. Hope this helps a bit. It would be nice to know that there could be a positive outcome,
Judy

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Re: worse 5 months after bilat ld recon

Hi

Just to let you know I had a clear result from mammogram YES!!!!!! nice one, such a relief!!

Asked my surgeon ref: intense itching which he says the medical term for is Formication. He told me that it is a type of nerve pain and does not know if it will eventually stop.

Ref: swelling of my back, pain, squashed feeling, cramp, etc he had a right good look and is of the opinion that it is indeed scar tissue and adhesions and that my side and my back are deeply scallopped. He could not advise on any exercise that might help but said to try massage to release the scar tissue/adhesions but could not recommend a trained person who would be able to do this for me. Also he does not know if it will ever sort itself out. Not much use eh ladies!!!! Next day saw my physio and she is not willing to do anything for me as she has no knowledge as to what to do to ease things up either. So where do we turn when the chap who is my surgeon is the top guy in ld flaps in my area? Any advice please?
Snowangel

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Re: worse 5 months after bilat ld recon

Yes I had the skiing warning too, but nothing else, and I made a point of stressing that I did a lot of sport and wanted to continue.
Your arm sounds much worse than mine. Can you raise it when you lift it to the front? Mine is much better to the front, but really difficult to the side.
What is CCT? I haven't had radiotherapy.
I agree with your mutilation comment. Every stroke in the pool today made me aware of the consequences, despite a really warm pool. My side tightens up always during exercise, but yawning, deep breaths etc are uncomfortable too. Just hope it's not a 'forever' condition,
Judy

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Re: worse 5 months after bilat ld recon

Hi Dahlia,
I have had 3 ultrasound sessions so far, along the back scar. I don't feel that it has done anything to release the scar tissue, but I am having 1 more session and then the physio is going to decide whether it's worth doing any more. I feel that the most effective thing for me at the moment is massage. The physio asked my OH to do it every day, and once I had curbed his enthusiasm (he's 6ft 7ins and very strong, and I have some quite sore bits where the drains have been....ouch!), he has managed to get some of the skin to move a bit. It's started to make a bit of a squelchy sound (yuck), but is still stuck. I still have restricted movement in my arm to the side, which the physio feels is muscular, but is not quite sure why! I swim 50 lengths (slowly) about 4 times a week, to try and retain the movement in my arm, but it seems to be getting worse. Even when I swim I can feel the 'suit of armour' tense down my ribs at the back, which is quite uncomfortable, particularly initially. It doesn't seem as if there is a solution at the moment. I wish I had been aware of all these possible problems beforehand.
Judy

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Re: worse 5 months after bilat ld recon

Hi Dahlia
Did the 'expert PS give you any solution? I am having ultrasound and physio weekly to try and release the scar tissue on my back. The skin has more mobility, but is still stuck, and my arm movement has got worse, when I raise my arm to the side. (I haven't had the nerve cut.)
Judy

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Re: worse 5 months after bilat ld recon

Maxine

I have had the same probolem on one side, still do. Spent an ENORMOUS amount on an osteopath trying to release dead tissue from ribs and so on and so forth. Finally got a second opinion from an expert PS in London, cost me £150 but worth every penny. Go get a second opinion. Did you surgeon divide the thoracodorsal nerve? The muscles may well be pulling back to where they "belong" and that won't help.

Never mind if your surgeon hasn't experienced this before - GET A SECOND OPINION, INSIST.

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Re: worse 5 months after bilat ld recon

Hi Ladies

I just posted ref your posting Jaxdar, interesting points above. We all seem to be having the same kinda problems, my surgeon has been telling me since my 3 month checkup that it will all get better with time, and when he says that he means a year and a half to 2 years he says. I am going to ask him today about adhesions and scar tissue and let you know what he says to that.

I am abhorred that they think prescribing anti-depressants would help heal you maxinebev, what a load of twoddle. I am on anti-d's for actual depression and have been since a year prior to breast cancer - not at all related to this awful illness which has invaded our lives. (I am one year on now, first mammo check today). They are obviously implying it is all in your mind which of course it is not.

Back to work - I have been on sick notes now for 1 year and they are only just talking about referring me to OH. It is interesting to note the disability act - you have been thru an awful lot and it is bullying tactics to try to force you back to work when you are not ready for it. What is your doctor saying about it? Its enough to make you suffer from depression!!

Good luck to you all from Snowangel

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Re: worse 5 months after bilat ld recon

Maxinebev
I have just put a similar question on under Reconstruction (Itchy/stiff/sore back). You are not alone I'm very stiff and sore, wooden is how I describe it, mine also itches like mad. My surgeon is also of the 'it will sort itself out' school I only wish his back felt like a million or two ants were crawling up and down it, he might be a little more sympathetic. The best thing to use for the bingo wings is two 500ml water bottles in which you can adjust the weight and slowly raise them out to each side to shoulder height as often as feels comfortable (start with 5 reps and take it slowly). If I get any replies that might help you I will pass them on. Jaxdar.

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Re: worse 5 months after bilat ld recon

Hi Maxinebev

I was sorry to hear that you are having problems following your reconstruction and that your work has been so bad at dealing with this.

I was dx in September 2007 and had 6 months of neoadjuvant chemotherapy. I had a mx and lymph node clearance in April this year and then had a month of radiotherapy which finished in July. My GP has been signing me off sick all this time because I felt so sick during the chemo, I couldn't move my arm after the surgery and have experienced problems with the radiotherapy.

I was on full pay for the first 6 months and then went onto half pay for the next 6 months. Despite my GP signing me off sick I received an appointment to attend an interview with an Occupational Health doctor. He was dreadful and told me that I would be back on full time hours by Christmas. I told him that my Consultant had confirmed that scar tissue from the rads was causing the severe pain and difficulty moving my arm and that I am on medication that affects my temperature control and gives me disturbed sleep so I am constantly exhausted. He told me to go to my GP and get prescription pain killers and ubuprifen type anti-inflamatories and then I could have a phased return to work.

I was really upset about this and contacted my PS by E-mail and explained the situation ( the OH doctor had given me incorrect advice about lymphoedema and other matters as well so I told my PS this). I received a lovely letter from my PS saying thet it was wrong to force me to return to work and listing the implications of doing this. He also gave the OH doctor a lecture about giving improper advice. I took photo copies of my PS's letter and sent critical letters to my employer, Human Resources at my work and the doctor at OH ( I sent them as coming from my husband as I felt this would sound stronger than coming from me).

My work have completely backed off now as breast cancer is covered by the Disability Discrimination Act 2005. If your GP was to continue to sign you off you could send a letter in to your work ( perhaps from your husband and then when you go back to work it won't have any implications for you) and you could ask if this act applies to you (it does) but it wouldn't seem if you were being forceful. The Civil Service will know that this applies and should take your health problems very seriously.

Good luck. After all you have been through your work should be more understanding!

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Re: worse 5 months after bilat ld recon

Hi Max,
I don't take any pain killers any more-I haven't done since about a month after the mx and recon. My bingo wings are fine when I walk briskly, but my ribs round the back in the area of my scar and below it, are really uncomfortable.
I can only do breaststroke at the moment, although I can swim on my back using breaststroke legs and sculling with my arms. My arms don't move equally with breast stroke, and I have very little power in my arms compared to pre-op. I used to be able to get across a width in 3 or 4 strokes. When I started back in the pool it took me 13 strokes, I can now do it in 7 once I have swimming for a while, but it is more initially. My back was quite uncomfortable when I first began to do breaststroke, but that has eased off a bit now, although I am always aware of my restricted movement. I can't do front crawl or backstroke now, as my arm just won't move in the right direction, which is very frustrating.
Are you seeing a specialist breast physio? I have got my second ultra sound along the scar , followed by physio on Tuesday. I don't think there has been improvement yet, but it is still early days for the ultrasound. I am only stuck at the back. Where are you stuck?
Is your GP sympathetic? Can you ask to be signed off for a bit longer? I certainly couldn't cope at work yet. Surely if you get another sick note, and your 6 months on full pay is up, you just move on to 6 months on half pay?
Can you ask for a modified chair? Not sure where you work, but they must have access to some sort of occupational health advice, to ease your return to work. Are you in a union?
Yes I have that delightful muscle bulge in my arm pit-very attractive too!
I'd be very interested to know how you get on. The holiday sounds good- particularly the alcohol. I haven't had a drink since the end of June.....a mere sniff would be enough to knock me out now!
Judy

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Re: worse 5 months after bilat ld recon

Judy
Sorry have not got back to you before but have been away for a few days to Teneriefe for my friends 50th birthday. The alcohol numbed the pain and I didn't take any pain killers whilst away. Do you still take them? You certainly do a lot of exercise. My under arms (bingo wings) still hurt when I walk briskly and I could never walk for an hour. Good for you. When I swim I do the breast stroke and it pulls my back terribly. Does yours?

Chased up physio. My doc had forgotten to do the referral. Went on Wed, but they said they didnt have enough time for me as my condition was too complex. I am going on Mon now with a longer time slot.Will mention scar tissue and adhesions too them.Is yours stuck at the front or back?

Still in a lot of discomfort. went to see them at work on Fri. Said I am coming up to the 6 months stage and they will be considering disciplinary action! So told them I would go back on Tues as my note runs out Mon. I felt really upset but didnt say anything. I am a civil servant and loads of people are off for longer than 6 months and go on to half pay. They dont get a warning.

Tried to sit im my chair whilst at work. The back seat curves out to fit the curve of your back. It felt awful on my back. Will have to take a pillow in to sit back on.

Did you have DCIS like me?

Have you got a nhuge bulge of muscle that sticks out under your arms and over the top of your bra.

Thanks so much for getting in touch. Take care.
Max x

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Re: worse 5 months after bilat ld recon

Hi
I am having similar problems to you, caused by scar tissue and adhesions, after my mx and ld flap recon on Aug 4th. I started physio about a month ago, after asking my GP for a referral. The physio massages me to try and release the skin from where it is stuck to my ribs, and yesterday also gave me ultrasound. My OH also does it every night. I can't feel any difference yet, although the skin has a bit more movement in places, according to physio and OH. I think that until the skin is completely released, I will continue to feel restricted- a deep breath is uncomfortable even. I swim about 4 times a week, but very slowly in comparison to pre mx. I also walk for at least an hour a day.
My surgeon just dismissed my back and side problems, and said 'give it time'. My back and side have been continuously painful since the op. I am sure it's not just in your head. Is it worth chasing up the physio referral? I was referred to a physio who specialises in breasts.
You have a better range of arm movement than me. I can't get my arms completely up the wall, and can't do front crawl or backstroke. It's certainly not for want of trying though!
I was hoping to go back to work after October halfterm, but I have been signed off until January. I teach special needs children, with very challenging behaviour, and need to be fully mobile to cope with them!
Please let me know how you get on, and if you are offered any other solutions.
Judy

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worse 5 months after bilat ld recon

Had bilateral mx and immediate LD recon in June. Started to do aqua aerobics and gentle yoga in a chair 3 weeks ago. Have now seized up everywhere. My back, sides, tummy, arms and boobs are hurting more now than they did before. My PS says he has not come across this before and I should be feeling better every day. He says I must continue with the exercises and even lift weights for my bingo wings which are chafing the muscle under my arms. I don't want to bulk out this muscles as it sticks out and feels enormous anyway.

My doc and the PS have suggested anti depressants for the healing now, but I don't really think this is the answer.

I stopped doing the hospital excersises after 3 months as I could reach up the wall by then. Should I have continued with them?I Asked my doc for physio 3 weeks ago but am still waiting. The discomfort is getting worse.Said I wopuld go back to work 3 weeks ago but am feeling too uncomfortable now. Is it all in my head?

Anyone else experienced this? Thanks.

Maxinebev xx