Help/information on where to go after reconstruction gone wrong

Hello Ladies,

Sorry in advance for the book. It's a long story taking place over 18 months.

I had a bilateral prophylactic ns mastectomy January 2019. Immediately after surgery I had a hematoma on my right side that needed to be surgically evacuated mid-February. Due to the hematoma my reconstruction was delayed until April 2019 when I had tissue expanders placed (under the muscle). I had 3 fills and everything seemed to be going well. Sometime after the third fill I had excruciating pain on the left side. I was at Costco, and the pain was so bad I called my husband to come get me because I couldn't move my arm enough to even reach my steering wheel. At the time my PS said I likely popped an internal stitch. Within a short time, my left TE had completely deflated. When I went in for my next fill my PS said the expander had "failed" and would need to be replaced. Mid-July I went back in (#4 since Jan) to have that expander replaced. During this whole process my right side seemed to be having an issue that was only getting worse. My expander seemed to be moving higher and higher, while my nipple kept getting lower. I asked my PS about it, but he said it would all work out once I had my exchange done. I restarted the expansion process on the left side, which continued through October. Mid-October I found out (not from my PS) that my expanders had been recalled, just 6 days after the left side had been replaced. I contacted my PS office and was assured there was no concern about BIA-ALCL from expander, it was out of an abundance of caution that they had been added to the recall. An exchange date was set for Dec. 2019. My PS continued to tell me the right side would be worked out during the exchange, with no mention of why it was happening. November 2019 my daughter (23 years old) was diagnosed with cancer. Due to her diagnosis, surgical plan, and likelihood of treatment needed I postponed my surgery to care for her. My PS assured me this would not be an issue, even with the recalled expanders. My daughter had surgery December 2019, and is currently (and forever) in remission as of February 2020. PRAISE THE LORD!!!!!!! During the time between October (last fill) and late February my right breast got so much worse. The nipple was at the bottom of my breast, starting to round the bottom, and my expander was moving higher and higher. Additionally, the bottom if the right breast looks flat, it just stops being round ¾ of the way down the breast. Because of my concerns, I decided to get a second opinion from another PS. I was originally scheduled end of March 2020 for my appointment; we all know what happened next, Covid-19. Because of this my appt was moved to a virtual appt in April with 2 PS from the same office. During that appt everything changed. The PS said I had a significant deformity, displaced expanders, and capsular contracture on the right side. She warned that I may no longer be a candidate for implant-based reconstruction due to the significant complications. Due to Covid-19 I would not be able to see the PS in person until my state reopened. Fast forward to June I was finally able to see the PS in person. By this time, the right side had gotten much worse. She stated I was no longer a candidate for implant-based reconstruction, only DIEP. I have been adamant since January 2019 I do NOT want DIEP. I know it's a great option for many women, but I really don't want to go that route. I left her office in tears and cried the whole 2-hour drive home. After that appt I contacted Dr. Sullivan (I really like him) in NOLA for yet another opinion, he said the same thing. He did state I was a candidate for a hybrid DEIP Flap, but still a partial procedure I don't want. While waiting several weeks to see him I set out to get as much information about capsular contracture with implant reconstruction as possible. That's when I found Cassileth Plastic Surgery. I contacted their office and was given so much hope from the very first call. They are out of network with my Cigna plan, but I made an appt and paid out of pocket so I could know if there was any other option besides DIEP Flap. My appt with Dr. Killeen was amazing and gave me more hope for a normal outcome than I've had in a very long time. During my visit with Dr. Killeen I was given information about biofilm; which I am likely to have due to my symptoms, and never having been given antibiotics during/after either of my TE procedures. I strongly believe Dr. Killeen is my best option for a positive aesthetic, and health outcome, outside of the DIEP procedure I don't want. I started the process through Cigna for network adequacy because no in-network surgeon (4 so far) has given me this option for reconstruction. After 3 weeks, hundreds of pages in documentation, a dozen + hours on the phone, and them requesting (in error) nude photos of my deformed breasts, I was denied. An appeal was filed through the office of the CEO due to the egregious errors and mishandling of the original request, again it resulted in a denial. Cigna refuses to pay Dr. Killeen in network, instead they continue to refer me to two hand surgeons who also do general PS (not 6-hour complex reconstruction revision). None of the 3 doctors they say are available can/will do the surgery Dr. Killeen says is available to me. I could use my out of network benefits, but my portion of just the surgeons fee is over $34k. I just don't have that available. I am at a complete loss of what to do next. I do NOT want a DIEP Flap; which Cigna is willing to pay for (at a cost of 3x more than Dr. Killeen's entire quote). At 49, I've had 30 surgeries and don't want to have a procedure on a completely unaffected part of my body. Does anyone know of a PS who specializes in breast reconstruction revision using ADM and implants, after capsular contracture and severe deformity? Anyone know of any way to get Cigna to see this as an option instead of paying 3x more for DIEP? I'm desperate to get my life back!

Thanks In Advance