Post Masectomy Pain

[Joanne S]

I posted this in the newcomers area a few days ago, but didn't get any responses from anyone with similar condition. My hope is that by posting it in the her2group, I'll find someone similar. I had masectomies with reconstruction (tissue expanders under the pectoralis muscle) in February 2007. I absolutely hated the way from I felt from the tissue expanders from day one. I felt like I had a bra on that was 6 sizes too small and a shirt on that was cutting deep into my armpits. I wouldn't call it pain, but just intense pressure. I had JP drains for five weeks. I visited the Plastic Surgeon weekly for expansions. During the second expansion. I felt some pain when the needle was inserted into the left expander. That same day, I ended up with a breast infection, including fevers and pain, and landed in the hospital for three days in April for IV antibiotics. Afterwards, I continued my weekly expansions. I experienced mild pain on and off. During my last expansion in June 07, I felt horrific intense pain just as the needle was inserted into the left expander, my doctor gave me a couple of preventative antibiotic pills on the spot. Since that day I have suffered through severe episodes of pain whenever I move, breath deeply or even cough. At the same time, I consistently run inconsistent low grade fevers ranging from 99-102. During expansion, I started physical therapy, and after full expansion, I went through radiation. At one point, I had to stop both PT and Radiation for a week when the pain was unbearable. I just finished rad a few weeks ago. I still have lots of pressure on my left chest (tightness and hardness). I do daily stretches and exercises and have maintained almost full range of motion. I still go through days in severe pain on the cancer side, again it goes away for a couple days then it suddenly comes back again. I think it is nerve pain because it is so intense, and sometimes it is coupled with muscle spasms. It hurts whenever I take a deep breath, cough, and move. It's been 6 months since my surgery. My plastic surgeon, radiation oncologist and physical therapist say they haven't experienced a patient with this much pain before. My blood work does not reveal any visible signs of infection and CT Scan doesn't show anything either---my plastic surgeon does not offer anything else except pain pills.... it's been so very frustrating ---Motrin does help diminish the pain while the other pills knock me out so I don't take them. I would love to find out the actual cause and have it resolved. Anyone have similar pain episodes or have any ideas? I found very little about Post Masectomy Pain Syndrome on the net. I have maintained an accepting, positive attitude since I was diagnosed and throughout my BC journey, but this ongoing problem has had me severely depressed for weeks now. Thanks for your interest in reading my story.