Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
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Study finds lingering pain, swelling, fatigue, mobility problems in many women
Thu Apr 12, 2012 09:08 PM
It has been two years since I had my double mastectomy. Lymph nodes were only taken on my right side. I still have pain in my neck, arm, chest, shoulder and side. My upper right extremities seem to have some type of dystrophy. I brought imformation on Post Mastectomy Pain Sydrome to my surgeon. I was directed to have a Rotator Cuff surgery which was to help with the frozen shoulder. I went through rehab for several months. I had a series of injections in my neck to restimulate the nerves in the upper right extremities. I have had laser stimulation, heat and cold hydration and a type of acupuncture. Doctors are still in denial that there is anything wrong with me. There has been no one that has assisted me with my healthcare, since the onset of my pain. I initiated pain doctors on my own, but it only seemed to make the pain worse. I began an exercise program to strengthen my arms and the rest of my body. I continue to fight fatigue, balance, and the full use of my upper right extremities. I don't have any faith in doctors at this point. I have been alone in my battle. Doctors are in denial that Post Mastectomy Pain is real. No one even wants to address the issues. I would like to hear from others that have experienced, burning, tingling skin, numbness, and pain in the chest wall, shoulder and arm. Just moving my fingers sets off my pain. I have a numbness on the right side of my face, neck, chest wall and arm and hands. I have little strength in my arm and hand. My shoulder, side and chest ache, when my arm is not stablized. Has anyone else experienced this type of problem.
Thanks for listening.
Thu Apr 12, 2012 11:04 PM
Hello Carol Sue. Yes I have had similar problems and you will find many others with varying but related problems on this website. There is another group on Facebook of women with similar difficulties and pain. It uses the term Post Breast Therapy Pain Syndrome if I remember correctly... and if you'd like to search for that, it could be worthwhile joining as it has one person in particular, Marisa, who keeps up-to-date with research articles from around the world on the topic. I wish you well....
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