Granulomatous Mastitis

[Robbie8473]

How many have had mastectomy after a diagnoses of idiopathic granulomatous mastitis?  I have gone through "conservative" treatments with steroids and several antibiotics.  The side effects are awful, I can't see hardly anything, I never sleep, and my blood pressure continues to creep up.  I also have had 2 surgeries for abscesses and one to check for inflammatory breast cancer.  Nothing seems to be working and am fearful another abscess is accumulating now.  Doc has referred me to Mayo Clinic, has anyone gone that route and if so what is the process?  I honestly would rather have the breast taken if I could get this all to stop.  Any answers would be greatly appreciated.

[Pjpat]

Hi:
  I had continuous problems with breast abscesses from August, 2007 and on many different antibiotics every few weeks.  I was diagnosed with granulomatous mastitis in June of 2008.  I had an wide open excision.  The lump removed left a hole about 3"X2" by 2" deep.  When the visiting nurse started,  she was packing 30 FEET (yes, feet) of packing material in the wound.  It gradually became smaller then,  in September of 2008,  the wound became deeper with tunneling.   A large had lump the size of a tennis ball formed.  I had another wide open excision in October. Unfortunately,  while in recovery,  I hemmoraged and was taken back to O.R. for a complete mastectomy.
  Now,  I am having problems with my right breast.  I told the surgeon that I don't want to be going through all the packing, etc. to just book me for a mastectomy.   I have been working with my family doctor and the infection control doctor to get the infection cleared up so that surgery can be booked.   I have a wonderful supportive family and great friends who make me laugh about the procedure.  
  I have read some comments that I should be on other medications after surgery.  I am going to ask the doctor(s) advice.

[clc3kids]

Has anyone responded to your question?  I was recently diagnosed and heard that Dr. Gray at the Mayo Clinic does have some expertise in treating this disease.  Of course, my insurance does not cover the doctors at the Mayo Clinic.  I have been seen at the UCLA Revlon Center, but they really have no expertise in this area, so I feel like my treatment has come to a standstill.  The oncologist referred me to an infectious disease specialist to start prednisone, but with the mixed results and apparent enormous side effects, I have not yet decided whether to go that route.