I went to the Pain Clinic this morning and have been started on Amitriptyline to help me sleep and maybe help with the tightness in my chest if it has any neuropathic basis, and local anaesthetic patches. Have also been referred for Acupuncture as it’s worth a try but was told by the Consultant that unfortunately around 1/3 of women having major breast surgery end up in the same position. He also gave me a copy of the letter to me (in response to my writing to my Consultant to get some answers as I’ve not seen her ONCE since signing the consent form to have the implants taken out) that says my chest muscles ARE damaged by the original surgery.
He also talked a lot around the issues with further reconstruction and said that most surgeons would be reluctant to try any other sort of surgery on me now that I already have chest damage. I told him that had I known a year ago what I know now I’d have opted for surveillance rather than Risk Reducing Surgery and he said that unfortunately he also sees a lot of women who feel that way in hindsight. He feels that I should go back to work and get on with the rest of my life and learn to live with it. He said all this in a most regretful tone but it’s just siuch a shame that nothing can be done for me apart from managing my symptoms.
Trudie.
I also went to the pain clinic earlier this week.
I am 31/2 years post “immediate LD flap reconstruction” after a mastectomy for DCIS. (no implant) I don’t know how this compares with your surgery.
However I had the tendon cut in one operation and then the nerve cut just over year ago because I felt so uncomfortable with the tightness and pain across my front. I felt at times people did not believe me.
I am feeling much better and have good days when there is minimal discomfort. However I am leaving no stone unturned because I still wake up nearly every morning extremely stiff across my shoulder and in the LD donor area. Certain activities like ironing. knitting, too much driving seems to aggravate things and send pain down my arms.
At the pain clinic I was offered capsaican /Axsian Cream to rub into the painful area and nortriptyline. I will get some acupuncture in September if things have not improved. My surgeon says there is still something he can release , scar tissue? and put some fat in my back?! I would rather not have any more surgery.
I did not expect to be in this position so long after the original operation. I have been through the whole range of emotions and do sometimes question if it was all necessary particularly in the light of the latest media discussion about screening and over diagnosis.
I do hope you find some relief. I realise I may have to come to terms with what discomfort I am left with. I wish I had been told that pain is a not uncommon problem after surgery but perhaps my innocence took me in the operating theatre in the first place!
Sally Ann
HI girls,
I’m in a similar boat. Had a skin sparing mastectomy with immediate LD reconstruction with becker implant in march 2006 and have been left with neuropathic pain in my arm, axilla, reconstruction generally and over the scar on my back and feel like I’m wearing a corset all the time. I’m still not working, taking MST, Pregabalin, Nortriptyline and using lidocaine skin patches at night.I’m having to go in for an implant change on 4th august as the implant has twisted and herniated through the muscle and for scar tissue to be released. I’ve asked for the reconstruction to be taken away and for my remaining breast to be removed but Prof won’t do that at this point and I’ve been coerced into trying to improve things this way before such drastic action is taken. I do however expect some adhesions following this surgery so do not see it as the answer to all my woes.
I was told some time ago now that there was nothing more they could do for me and I should get on with life, It’s hard to take the level of disruption to my life and being in the minority having so much trouble does not bring me any emotional relief.
I have found acupuncture helpful in lessening the discomfort over the scar on my back and the lidocaine patches are really good at damping down the pain. I have to be careful how many patches I use. The anaesthetist that prescribed them said I could use 3 patches daily for up to 16 hours but I have a rapid heart rate and they can make this worse so I stick to one a day cut up and strategically placed in the areas causing the most pain at the time. I use them at night to help with getting comfortable to sleep. Still struggling with night sweats though. Any suggestions gratefully received!
The Nortriptyline is similar to the amitriptyline and I find it again helps to lessen the frequency and intensity of the pains day and night.
I also always feel better in my mood when having alternative therapies of some kind and strongly advise asking for any and all treatments that may be available. Keeping my mood up is my major battle. It’s difficult to get on with things when the pain constantly reminds you of the situation behind the surgery. Alternative therapies seem to focus me on caring for myself and the indulgence of someone lavishing their attention on you for a whole hour is magical. I always feel less stiff generally in all my joints and this helps with the stiffness in my shoulder, back and chest and at the very least I feel more relaxed mentally.
Try not to focus on the what ifs. The wisdom of hindsight is a wonderful thing to mess with one’s head. We did what we thought was best at the time and that’s all we can do really in the absence of a crystal ball.
I always try to focus on what can make a real difference and in our situation those differences can be subtle but they’re there none the less. Break your pain down into smaller components. The patches help me do this as I use them on the areas that are most problematic on the day. this changes for me as I’m sure it does for you also. I’m currently looking at what herbal remedies may be useful. I’ve tried the pepper cream and it didn’t work for me. I’ve also tried TENS with the physios. It wasn’t for me but I know people it does work for.
I also find that keeping up with my exercises has help with the tightness. I stopped doing any for some time and things got worse. I felt like my ribs were caving in eventually but I restarted my exercises and it has improved.
I also felt that nothing could be done at one point and if you look at it from the wrong angle that still applies. I now believe I can do alot and by not allow the situation to grind me down i make my hardest stand. I got to a point were it was up or nowhere before I managed to change my outlook and when I started nagging at it things that could be done to ease the distress did become apparent.
I hope things can improve for you also with the new treatments you are having and push for what is available in your area. I find if I don’t ask I don’t find out.
Lyn