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Jan 24, 2010 04:18 AM AnneW wrote:
I think your idea is fabulous, whippetmom & deeds! Call it the BCO Project. I'd love to help out, having been here for 7 years--I've seen a lot, and experienced a lot.
Re the PMPS--it is so very "for real" but the surgeons don't really acknowledge it because it implies a less than perfect outcome on their part. And I know so many doctors who believe that educating you about potential bad outcomes means that with every little twinge we'll be calling them in panic mode. When really, it's the exact opposite!
One reason to aggressively treat neuropathic pain like PMPS is because the body/brain will start to recognize pain as the norm. By then, it's too late. Like a computer, you need to "reboot" the system. Lyrica or Neurontin with Clonazepam or Cymbalta help do that.
I had severe nerve pain after my implant exhange--down my side initially, then into my armpit and shoulder blade when I stretched and rotated my body. Horrific! My PS just seemed befuddled. I got to a pain specialist immediately and got on treatment. (I used to work for the pain clinic, so I knew what to do!) The meds helped relieve the pain, but my "cure" was when I got the implants out and had flap surgery. My new PS untethered that nerve from the scar tissue that had built up, and I was able to get off meds.
Scar tissue was the result, but I agree it didn't START that way! It was interoperative trauma.
I suppose that even if I had been advised of this potential, but rare, issue, I would have gone ahead with the surgery. And if I had been given a big list of everything that could possibly go wrong, I wouldn't remember half of it. But it would have been nice to have some resources to refer to when it DID occur, so I wouldn't have felt all alone in my pain.
So, how do we limit it to 25?? There are so many potential issues, depending on what the category is. Some of us may focus on reconstruction. Others may want to take up chemo, rads, LE...there are many women here with lots to say, things that can help so many others. I see more than a PDF or tear sheet. We've got ourselves a book!
2002 IDC stage 1, grade 1, rads & AI
Diagnosis: 9/18/2007, ILC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-