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Posts (3)

Jan 23, 2019 · Post Mastectomy Pain Syndrome in Breast Cancer

The only thing that has never been mentioned on this site that a plastic surgeon suggested and was willing to research for me was Botox. I never pursued it but he is highly regarded in my area and was trying to brainstorm as to what might work, knowing how difficult it is to treat. It was at least ten years ago, he knew it would have to be large amounts and wouldn’t be a long term fix, but I have recently thought about returning to him to discuss current thoughts about it. Some of you may be interested in asking about it as it is used so much more now.

Oct 23, 2018 · Post Mastectomy Pain Syndrome in Breast Cancer

I will be very interested to hear the results of your procedure and wish you good luck. I had a bilateral mastectomy in 2002 with lat flap reconstruction (uncommon now) and 11 nodes removed on one side, chemo, no radiation. I have been uncomfortable since day one and it has never changed. Tightness in a band all around my chest, jabbing in my armpits, all 24/7. I tried gabepentin, lyrica, now take a bit of topiramate but nothing helps. I finally was diagnosed with intercostal neuropathy, which is much like what happens to amputees but surgeons deny the existence of it in mastectomy patients, or at least they did. Maybe times are changing…I hope so.

May 25, 2018 · Post Mastectomy Pain Syndrome in Breast Cancer

Fifteen years ago I had a bilateral mastectomy with latflap reconstruction (looks good but doesn’t feel good) and woke up with the same nerve pain I have today. I have constant jabbing in my armpits and the feeling that my beasts are suctioned to my chest and I am wearing a bra that it too tight all the way around my back. I have seen numerous plastic surgeons and finally saw a pain specialist who diagnosed it as intercostal neuropathy and advised me not to let anyone cut the nerve, which had been advised. It is the same type of phantom pain experienced by amputees and found in the the same percentage of patients. Perkins literature shows that most plastic surgeons are unaware or deny its existence, which was my case. I have tried neurotin, lyrica and now use a little topiramaye, not sure it helps much. A really good PT might be able to show you what exercises/muscle groups to avoid.