October 26, 2000

MRM Nerve Damage
Norma Steele

Dear Alexandra,
While I never experienced anything as extreme as what Wendy describes in Mastectomy Pain Advice sounds like something that I went through for almost 2.5 years post surgery. Even to this day I experience a bit of this.

I could not tolerate the weight of the prosthesis against my chest wall for longer than 4 hours at a time. It would start to feel as if I had a huge weight leaning against my chest. I used to describe it as having the weight of an anvil against bare bone. My chest would be extremely sore to the touch.

For a year I complained to every doctor that I saw about this constant pain I had. I knew it was being caused by the weight of my prosthesis because when it was removed it went away but every doctor told me the same thing: Your nerve endings are just healing, it will take time. And so for a year I put up with this and was starting to feel as if I was going crazy since no one seemed to be concerned. I was starting to think that this would indeed become chronic pain that I would have to live with for the rest of my life. Finally, after breaking down in tears in my onc docs office, I was given a prescription for Elavil for nerve pain and after a period of 2-3 months I did get some relief. I was able to wear my prosthesis 6-8 hours without the pain.

One night I went to an open house at CBHP (Community Breast Health Project) and was able to talk to a plastic surgeon about the constant pain I had. She immediately nodded her head and said that I probably had a neuroma. Just as Wendy was told, she explained to me that it is nerve damage from my MRM. The nerves were bunched up into a bundle and were causing me pain. She suggested that possibly it could be remedied by surgery but most likely would disappear with time.

I stayed on the Elavil and finally about 6 months ago I realized that the pain had diminished to discomfort and only occurs after wearing my prosthesis for most of the day. I no longer take the Elavil but I do however still have days where it does hurt quite a bit, this past week as a matter of fact.

I hope that Wendy can find some relief. As I am writing this I think there was someone else on the List that went through something similar. If my memory is correct, I think it was S... S... who went through what sounds like very similar pain as Wendy's. I also seem to recall that it did eventually diminish so that she could bear to have clothing against the skin.
Live, love and laugh,
Norma Steele

The Post Breast Therapy Pain Syndrome Information Handout
http://www.cancerlynx.com/pbtpsinfo.html
http://www.cancerlynx.com/pbtpshandout.php
The Post Breast Therapy Pain Syndrome Information Handout, page 1
The Post Breast Therapy Pain Syndrome Information Handout, page 2