Breast Reconstruction: Stories

I went to a Pain Managment Dr. for my horrible Tissue Expander pain. My ps and his staff treated me like I was a pain in the rearend when I would call pleading for some pain relief. My PM Dr. and his staff are so supportive and say if a patient is in pain the healing process and tissue regrowth is slowed down. I am going for a second opinion to a female ps this week regarding the length of time needed to keep these darn things in before the implant surgery. I was a small C and had tissue sparing Bi Mastectomy late March. I am now blown up to 720cc and !st pc want to expand me to 800 and hold it till November!!!! To top it off I want to to go a cup smaller I always hated my big chest, I want to be a small B!

No sweetie, you are not imagining the pain. I was in Pain for as long as the expanders were in and lots of it. I had a hard time also with my dr. Honestly this is because they do not want to give out pain meds due to FDA cracking down on drs handing out pain meds. Everything script is now kept track of for each dr and each of his/her patients. I was very persistent on getting some type of meds to help me deal with the pain. I don't know what to say to help you other than you are not imagining the pain. I can say as soon as the expanders come out the pain will stop. I wish you all the best and if you would like someone to talk to feel free to send me a private message and we can im or just email. I feel your pain, and it is horrible to hurt 24 hours a 7 with no relief.

I keep reading on here posts saying the expansion process is painful. I know it has been excruciating for me starting with my third fill of 60cc which has me at a total of 430 cc (I am 5'6" about 130...on the thin/muscular side). What I don't understand, and it is making me think I am crazy, is my PS and PS nurse saying none of their patients have expressed having as much pain as I seem to be having?? I am not imagining this...I have been off from work for three days now and can still barely move, breathe.

Breast expanders are painful the bigger they expand them. I always used the lidocaine the oncologist had prescribed to use w/my port for chemo. You use it 30 min. before. I probably did use enough of it! I tried to always look at the 'reconstruction' as the 'fun' part of cancer. It was re-building! Bringing me back to the normal. Actually it was bringing me back to what a whole new normal would be. I didn't know that yet. I had breast expanders for a year. They were put in when I had the bilateral mastectomy, and my plastic surgeon planned the 'expansions' on my 'good' week from chemo, which was the week before my chemo. I had 6 chemos, so she took that time in expanding me, which I am sure helped.
The feeling I compared to the pain of braces when you had them tightened and moved. NOW, I am old enough to have had the full band silver braces with all the wires, much more pain than now! ;) It is worse for a couple of days then lets up. I was up past 650 cc when it was time for radiation. My pc then took 1/2 the filler, down to around 300 cc, out for radiation treatments. My 'team' of doctors talked and all worked together. I had 33 radiation treatments and took a little time to heal from the burn, then my pc started expanding again.... this time she went a little faster. I don't remember exactly, as it was August 2007. I remember having to go to a meeting before school started,and had expanded before the meeting, and because my radiated side was more damaged, etc...it had started bleeding. That day I had worn a white shirt! :( I started putting paper towels down my shirt having my 'bra' hold them, and went home at noon to change....There were 6 of us in the meeting, but all of them, & 1 man, had gone through the whole cancer thing with me the year before, so it was just another one of those things. My plastic surgeon always asked how I was on pain pills when as I was having this done. I did use them as needed. We expanded until the expanders were totally full-730cc. HUGE.. TIGHT! When saline 'sprung out' as she withdrew the needle we knew I was full! They are hard as a rock at that stage too. As she expanded the pressure also went to the inside, toward my lungs, which made it harder to take a deep breath. They were so full that they fractured a rib and didn't know it, until I had a bone scan or something. That explained the pain too! She expanded them bigger to give her more to work with, and the radiated side the skin is damaged. At Thanksgiving I had the implant exchange, she put in 550cc and that seemed like nothing! They felt so good! Now, I am still going through reconstruction, and will have to have things re-done, after time has let things settle in. They actually have seemed to 'sink in' some. My radiated side has stayed soft, which had a 50/50 chance of doing since it was damaged.
The answer to are tissue expanders painful? Yes, they can be! ;) Sorry this was so long!

Dear High Point NC, I totally feel your pain, been there done that. Unbelieveable pain for months and then I had 4 months of pain after the 1st implants until I had my second surgeon replace the implants and do fat grafting. What a beautiful job he did on me. Can't wait for the nipple reconstruction.

Wow, so sorry to hear. A double mastectomy sounds daunting enough. What did you find was the best thing to do to manage?