BRAC2+ Opted Bilateral Mastectomy That Ended in Severe Complications -Indianapolis, IN

I had my surgery to be preventive...it's been less...

I had my surgery to be preventive...it's been less than that from day one. I just had surgery #9 to try to repair damages from 1st surgery. My expander on left side ruptured within hours of procedure which lead to going back to OR to remove defective expander. From that day I've had daily ribcage pain /left breast pain. I received bone marrow pain I jections to 6 ribs on left side & 3 sternal injections to help with pain. The injections helped for nearly 3mths then the pain reappeared...I was sent to a pain Management MD that is still following me for pain issues. My lect jp drain fell out 2weeks after 1st surgery &was still draining30 to50 mld per day & they decided due to the complications not to reinsert drain. I have had constant issues of left breast swelling where swli g so large breast had to be held with both hands to walk. The extreme swelling of left breast caused thinning of tissue which in return caused necrosis to left areola that I was told was normsl. But being a nurse I new otherwise. Called several times to get help only to be told this was all normal and the pain I was experiencing was in my head. They stated they had never had this happen or experienced a patient of my nature. Needless to say I switched MDs and have had several surgeries to repair damages. My 9th surgery was 2weeks ago where I was taken to OR emergently because they had placed alloderm for added support 2 1/2 wks prior & I now have a bad Staph infection resulting in alloderm being removed Vancomycin irrigation of left side to flush infection out and clean cavity then they placed jp drain. Jp drain was in for 1 1/2 weeks and removed along with the staples around areola. I'm now still on antibiotics due to the sensitivity. My left breast is still swelling as it always has and I go back on Tuesday because implant appears to be pushing out around areola. Never in a million years this would be my life...constant pain & swelling. Below I will add a picture of the 1st necrotic episode & a picture of just today. I would never wish this upon anyone & hope if one person reads this & contacts me & I can help them from going through what I am almost 2yrs later.

stem cell fat transplants

I've currently had to have my left side totally removed on December 23 2013 emergency due to implant was exposed through skin ripping from being thin. I had a stem cell fat transplant at the same time and will have 2 more before they will try to do an expander and reconstruction to the left. Sorry for the late update but 3 pretty much back to back emergency surgeries from November to end of December has kept me busy :)
anonymous

My second opinion physician hands down is phenomenal. He along withmy 2 pain physicians dedefinitely have been my saving grace through out this whole ordeal!

1 out of 5 stars Overall rating
3 out of 5 stars Doctor's bedside manner
1 out of 5 stars Answered my questions
1 out of 5 stars After care follow-up
1 out of 5 stars Time spent with me
1 out of 5 stars Phone or email responsiveness
2 out of 5 stars Staff professionalism & courtesy
1 out of 5 stars Payment process
3 out of 5 stars Wait tmes
Was this review helpful? 3 others found this helpful

Comments (13)

Sort by

It will be three years for me in August. I also had double mastectomy due to brca2 positive. I know we made the right decision. I will deal with the pain as long as I am here for my son but enough is enough. I believe that you are only given as much as we can handle. Boy we are strong. Good luck and continue to be strong.
  • Reply
You have been through so much! If the decision to have the surgery was not tough enough, now you continue to suffer. What state did you have the surgery in? Wishing you the best!
  • Reply
Wow. Sorry for all your troubles, you are definitely a brave and strong women to tell your story. I know at times you wonder why me, but it wasn't a mistake god gives the toughest battles to his strongest warriors.
  • Reply
Oh wow you have been through so much. You are such a strong person for posting your journey on here for the benefit of others. Thank you.
  • Reply

Thank you for sharing your story on RealSelf. You are a wonderful person for sharing so others can learn from you. It sounds like you might have a surgery this week to revise the left side completely? Let us know how it goes. If you have a chance, we'd love an update to your review. Hang in there and big hugs to you!

  • Reply
I've had a couple of surgeries since this last post....The last was because of a staphylococcus infection that actually made my left implant puncture through the skin...they removed my left side totally. At the time of removal the physician did a stem cell fat transplant to the left side. I will have this done 2 more times with the hope that the stem cells regenerate thicker skin on the left side so they can place another implant.
  • Reply
Ugh, you have been busy...recovering. I'm so sorry. It does sound like the stem cell fat transplant is working. I'll keep my fingers crossed that the next two times are also successful and you can get the implant in there soon! Are you still on some fairly powerful antibiotics? Than you for the update. Do keep us posted!
  • Reply
I am so sorry for your complications, I too have had too many surgeries and poor outcomes, now may be facing more cancer from radiation and too many radiologic tests. Bilateral Pleural Effusion, thoracentesis performed and 180cc fluid removed, dark pink in color. PET scan Monday
  • Reply
Please check your inbox, I sent you a PM.
  • Reply
checked , couldn't find a message, rissa
  • Reply
hi, never saw your message..
  • Reply
This site is a great place to help women become proactive. I requested the transcript from my 16 hr surgery, very enlightening. My surgeon (not board certified) reports" I inadvertently damaged an inferior epigastric vein making it unable to be harvested", resulting in 2 different procedures on my breasts! good luck!
  • Reply
I'm devastated that you are going through this. I hope that your story will help others. You were very brave to share it.
  • Reply