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Post Mastectomy Pain Syndrome: How are you coping?

Breast Cancer | Last Active: Aug 18 4:53am | Replies (31)

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@dlw0221

Another long term sufferer, but I have you beat by two years, not a distinction I enjoy. I have been so frustrated trying to get care for my PMPS and it is at the point where I am almost completely disabled. I first had a left side lumpectomy in Dec. 2002 then full left side mastectomy in 2009 followed by six weeks radiation. What luck, all bad, I had two tumors located on the outside left quadrant, one on top of the other and I have pictured lots of digging going on plus removal of lymph nodes. I suppose I had a normal recovery but had already been fighting neuropathy from my previous lumpectomy which had been done in same location but left only three clean margins. It wasn't too long before the PMPS increased with serious Intercostal neuralgia. I was receiving injections every three months and they helped and I was on an anti-inflammatory, anti-depressent, and opiate pain medications I also have severe Degenerative Disc Disease so that was and is a huge contributor to my problem. While my healthcare was at UCSD my post mastectomy pain was treated but since I am now on Medicare even with an Advantage HMO I have been almost ignored. My pain specialist (joke) wouldn't even perform an exam, I had to pull up my shirt to even get him to acknowledge the issue. I am in so much pain it hurts to breath and the referred abdominal pain is absolute hell. I had lidocaine patches that helped but now the insurance company won't pay for them. I really am desperately seeking help so let me know as your treatment progresses, I hope you have success. I see a neurosurgeon next week regarding possible back surgery and I am going to see if he can help me with this too or I have to go thru the hassle of getting a referral from my primary then hoping insurance will approve it. Poverty sucks and I am poor but just not poor enough for Medicaid and at 75, Social Security is all I have. Hopefully more help will be available for us soon, we have been ignored too long. This disability goes right along with the MeToo Movement, mostly affects women so not a top priority maybe. Keep me informed. 😼 🙏 💞

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Replies to "Another long term sufferer, but I have you beat by two years, not a distinction I..."

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.