POSTED UNDER Breast Reconstruction REVIEWS
BRAC2+ Opted Bilateral Mastectomy That Ended in Severe Complications -Indianapolis, IN
ORIGINAL POST
I had my surgery to be preventive...it's been less...
lacookseyDecember 14, 2013
$50,000
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.
UPDATED FROM lacooksey
1 year post
stem cell fat transplants
lacookseyJanuary 17, 2014
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 :)
Replies (9)
January 22, 2014
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!
January 28, 2015
Now insurance is denying my last surgery. I got new insurance because bluecross blueshield stopped taking MedicaI'd patients. Had to change to Fidelis. Need one more to restitch muscle that fell off chest wall and put smaller implant in and put more medially and do capsulotomy. Insurance thinks it's tfor cosmetic reasons. Now what. Depressed in New York and it's 3 degrees to boot. Brrr. Oh well thanks for listening.
January 28, 2015
It's a needed operation. My Dr told me to write to my congressman and tell him. My insurance denied my surgery the day before my surgery. It's crazy 1 day before. I was ready to get it done and over with and 1 day before denied. He also wants me to call American cancer society and see if they can be an advocate for my case.
January 28, 2015
My heart goes out to you. That's such aweful news to receive, especially going through such a challenging time in your life. I am glad to hear that your doctor is helping you by suggesting some resources that will hopefully assist you. You might want to connect with member sinbad1, she was denied coverage after 5 surgeries:
INSURANCE COMPANY DENIED COVERAGE BASED ON MEDICALLY NECESSITY, HOW HARD IS IT TO WIN AN APPEAL?
You might also want to consider sharing your story with the community by writing your own review to get more support while helping others going through the same thing. Please keep us posted.
April 8, 2014
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.
January 27, 2015
Bless you angel child for sharing and trying to enlighten everyone. I have appt this Thursday with princess Margaret hospital to meet a wonderful nipple-skin sparring surgeon and I will insist on NO inplants , reconstruct with fat transfer only. Please read all Susanne Somers books, she has been screaming this news for years and the louder we scream to the powers that be the faster they will make this nightmare of yours history and give us cutting edge medical care. Bless your heart. Gods spead in your healing.
January 28, 2015
Had brca2 and opted for bilateral mastectomy as well. Nothing but problems with mine as well. I had muscle rerouted from back and then implants put in. No expanders needed one surgery, 8 surgeries later now my insurance is denying my last one. What a mess. I'll pray for u and hope for the best.
Replies (16)
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!