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4Evalive's Message Board Messages

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On 5/17/2005 Sazzy wrote:

Dear Lucy, I hate to say it, but it's been two years and four months since my double-mastectomy, and I still have the "bunji-cord" tighteness and pain under my arms and across my chest, relieved only by hydrocodone (and every other dose or so, I have to take Benadry to combat the itching). The tightness is so bad sometimes that I panic, and I cry, just out of anger. I'm on disability because of it, and no one seems to have an answer. My primary care physician says that because the neuro-muscular pain has been chronic (since waking up from the surgery) for so long, it'll be this way forever. My surgeon never even talked about the lingering effects of the surgery. He just drew little smiley-faces on the exam-table paper to describe what I'd be left with post-surgery, but also forgot to tell me about the sagging, multi-layer skin folds he left behind, which he says used to be part of the side of my breast tissue, and which now are disgusting and depressing to look at. The pain and the unsightliness of my chest are daily reminders of my breast cancer, and it's hard to think positively about non-recurrence when I have these with me every day. I wish someone would develop a remedy for the chronic tightening and pain that doesn't involve habit-forming drugs. Please, God, send that person to all of us who fight this pain every day. We need help now, and it's NOT in our heads. By the way, if your doctors won't give you pain meds, it's time to change doctors. This is a recognized post-surgical problem (lots of references on the web under "post-mastectomy pain", and pain medication is responsible pain management, to which you are entitled, no matter how long you've been in pain. Shame on the physicians who have refused to treat this very real and chronic condition!

 

Please get a referral to a physical therapist who is familiar with myofascial release and soft tissue work.  The tightness is scar tissue that is growing and becoming more solidified from the scraping and cutting of the mastectomy.  If not taken care of can even cause boney changes, posture and shoulder pain and shape.  I was not referred by any of the docs that took care of my mastectomy and reconstruction.  The only reason I am aware is because I am a speech therapist and work with physical and occupational therapists.  There is hope for pain-free and drug free living post-mastectomy.  Good luck.........God bless!  Eva

 

On 3/21/2005 Lucy A. wrote:

Linda, I am so sorry that I have just noticed your mail from March 2004 regarding Post Mastectomy Pain. And I am so sorry for your pain. I had my lumpectomies and mastectomy 3 years ago and I am sorry to tell you this but I still have the pain. At least 3-4 days a week I have pain under my arm pit and across my chest - burning and stabbing nerve pain.I have been told by MD that it will go away!! But when? And now no one will give me any pain meds. !!! I have been to a pain center and they want to try me on neurontin which is used for patients with other nerve pain conditions but I am afraid of the side effects.I am thinking of trying acupuncture next. There is very little out there about the syndrome. Good luck with your search for relief. Lucy New York

Lucy,

I am a 3 1/2 year survivor, Left mastectomy with reconstruction and suffered with pain.  If I did not work closely with physical and occupational therapists (I am a spech therapist), I would have never known about MYOFASCIAL RELEASE.  This is a physical therapy technique that works on the scar tissue that is hidden underneath the surface from the scraping and cutting of the tissue during a mastectomy.  It can cause shoulder pain and can even cause boney changes.  None of my surgeons referred me for therapy, they just gave me pain meds.  Myofacial release and soft tissue work is truly amazing.  Please get a referral for physical therapy and find a therapist familiar with these techniques.  Good luck!! Eva

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