Breast Implant Removal: Stories

In January 2011, very small but cancerous tumors were found in both breasts. I had a bilateral mastectomy in March 2011. Because the tumors were so small, I did not require chemo or radiation therapy. At the end of April, a plastic surgeon began breast reconstruction by inserting expanders that I found extremely painful (non-stop burning raw pain). At the time, I just thought that that was to be expected and I just needed to get through it. I never found anything to relieve the pain, including pain relievers like percocet and Vallium. The expanders were removed and replaced by 400cc Natrelle silicone-filled breast implants on August 20, 2011. I felt that the final results were too large (my natural breasts were smaller), but I was just glad to be done with it.

The burning raw pain has never gone away.

I've worked with a pain specialist who prescribed gabopentin, lyrica, and most recently Cymbalta. I also tried 6 weeks of bi-weekly accupuncture. The accupuncture gave me intermittent, mild relief, but the pain continues to be overpowering and life-changing no matter how positive I try to be. The amount of activity I do or don't do seems to have no effect. Finding things to take my mind off the pain has been the most effective, but it's a constant struggle and depression is making me find less and less things that I care about anymore.

I've found evidence on the Internet and in Dr. Susan Love's Breast Book that as many as 49% of women have life-altering pain after mastectomy and/or reconstruction, but none of the doctors I've seen have any experience with such patients. Where are these women? I would like to ask them if they have tried relieving the pain by having the implants removed. I'm leaving implant removal as a last resort because I fear that whatever healing that has occurred (although not evident) will have to begin all over again.

I would be interested in hearing from anyone who has experienced the non-stop burning pain I've described whether they've had a mastectomy or not. Did removing the implants resolve the pain?