Chronic Regional Pain Syndrome (CRPS) - Post Mastectomy Lingering Pain

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Chronic Regional Pain Syndrome (CRPS) - Post Mastectomy Lingering Pain

by Patti_in_Cincinnati on Fri Dec 26, 2008 12:00 AM

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I had a right mastectomy on 3/28/01 (for an early stage II Breast Cancer). Twelve lymph nodes were taken in the axillary node dissection but none were positive.

I've been left with pain ever since.  The breast cancer surgeon did not want to address my pain issues.  I called the oncologist's nurse in tears after 6 months of continued suffering while I was undergoing 8 chemotherapy treatments with Adriamycin/Cytoxan and Taxol.  She suggested they start me on NEURONTIN.  I've been on Neurontin since October of 2001, and my primary care doctor (an internist) also prescribed Pamelor to be taken at night time along with the Neurontin. I've also spent $1,000.00 out of pocket for acupuncture (which the oncologist wanted me to do).  Plus, I have gone to two pain clinics and tried a few different medications.  I've also had two TESI procedures (Thoracic Epidural Steroid Injections in the back spinal area).  They did not help the pain. 

Has anyone out there experienced the same frustration of having lingering pain that is a daily chronic pain cycle?  If so, what are they doing to address their pain issue?  I use a daily Thermophore Moist Heating Pad when the pain peaks at different times througout the day and that seems to help.  I've had no issue with lymphedema in the arm  after years of using the heat just on the right chest area.  Also deep tissue massage seems to help when the stinging pain peaks and I use cocoa butter massage cream and spritz it with water when I repeat the massage over and over and that seems to calm things down. 

I've done some reading and one thing popped out that I think may have happened--perhaps while doing the surgery, the intercostobrachial nerve was cut and damaged. 

After the first year of suffering through the pain, I changed breast surgeons and am seen on an ongoing basis every four months for just a routine breast exam on the left and also checking on the right side on the scar line, as I was told by the second breast surgeon there is a 10% chance that cancer smetimes recurs on the scar line.  I've had CT Scans and 3 Breast MRI's and PET in the past.  There's nothing there that has been of help to the oncologist. 

If there is anyone who has had any success with getting successful treatments of any kind, let me know.  I had my cancer at age 55 and am now 63 years old.  Would like corresponding with anyone in a similar situation. 

Patti in Cincinnati






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