No Flap Surgeons in My State, Out-of-Network Coverage

Outdoorsy

I realize that this post is long, but it might be helpful - and not just for Medicaid recipients. You never know when you or one of your loved ones may be faced with these challenges.

Some may roll their eyes.

Some may think less of me.

Some may be jealous of my "free" healthcare.

Heck, some may even think that I don't deserve to have breast reconstruction.

Because I'm enrolled through one of my state's Medicaid insurance plans. Trust me. I understand. I worked full time just about all of my adult life, bought health insurance through my employers, and didn't always have a completely positive outlook about people enrolled in Medicaid.

I was ignorant, and I am still learning.

I'm learning what it feels like when your employer eliminates your job due to budget cuts.

I'm learning to make the little money I saved work to now pay my mortgage so that my 12-year-old daughter and I can retain some sort of "normalcy" after I told her that her 43-year-old single mother has breast cancer.

I'm learning to deal with the "I feel like much less of a person" feeling when medical office staff ask me what insurance plan I have.

And one of my biggest learning challenges? It's learning how the Medicaid insurance plan I'm enrolled in works and how physicians and their staff work (or don't work) with the plan. It's taken months for me to find a physician who will agree to "work with" my plan. That's because there are no free flap breast reconstruction surgeons practicing in Delaware.

The only in-network, free flap physicians are from Penn Med. Pen Med is about a four-hour round trip drive for me, but I was ecstatic after finding in-network physicians, and happily drove to appointments with a plastic surgeon and breast surgeon at Penn Med. While meeting with one Penn Med plastic surgeon, I told her that I didn't want breast implants (for other health reasons that I believe are related to the silicone implants I have now) and that I was looking for tissue reconstruction immediately after my nipple-sparing BMX. She, at first, said that PAP would be a good option for me, even though I would be an A cup. A week later, she called me to say that she didn't feel comfortable preforming the surgery on me, after all. She suggested I see one of her colleagues about SGAP. I called, made an appointment with her colleague, but was then called back by office staff stating that he doesn't preform SGAP anymore.

I understand that bilateral tissue reconstruction surgeries are very long and expensive. I've worked in the healthcare field, and I know that certain insurances pay physicians more than others. I totally get that. But this is getting extremely discouraging. Months flew by, while I was waiting for appointments, having tests, and making numerous phone calls.

I've learned that since there are no other free flap surgeons in-network, I can find an out-of-network physician and ask my insurance provider to cover services as in-network. But, I also have to find a physician who is willing to stand up to my insurance provider and help explain why I'm seeking out-of-network coverage with that physician. This is the hardest part of all -- finding a physician with persistent office staff who are willing to deal with the pre-authorizations, denials, appeals, and the peer-to-peer physician reviews.

I made more phone calls and found one microsurgeon, Dr. Joshua Levine, who is willing to help with getting services paid as in-network. I sent him shoulder to knees pictures and had a phone consultation with him, because the trip to see him in New York would be about an 8-hour round trip for me. All seems great with Dr. Levine and his wonderful staff -- except that he is suggesting a "four flap" reconstruction with PAPs (both thighs) and an extended DIEP. I was/am hoping for SGAP (both buttocks). I was thinking SGAP would make more sense, since I am 5'6" 130 lbs, hold more fat in my buttocks, and I thought it would be less painful sitting (compared to PAPs). I just don't know how I feel about the extended DIEP and PAPs. Have you had bilateral reconstruction using PAP and DIEP, or even just extended DIEP? If so, are you happy with it? How about surgeries specifically performed by Dr. Joshua Levine? Successful? Positives? Negatives?

I've been reading a slew of posts from this community forum and gathering physician names. This forum has been such a help to me. I continue to be amazed with the wealth of information you all are sharing. I am more than grateful, for this forum has been one of my greatest resources. THANK YOU!

I need to get moving on the bilateral mastectomy, because I found my mass June 2017 and had a lumpectomy August 4, but the margins were less than .1mm for my invasive ductal carcinoma and for my DCIS. I don't want to give any leftover cancer cells even more growing time. I do not want radiation (currently have implants and don't want to chance other side effects). I just hate how much time it takes calling, making appointments, and waiting at least a month to see each physician.

Yesterday, I called Dr. Kline's (and Craigie's) office, explained that my insurance has no in-network physicians preforming free flap procedures and said that I should be able to get services covered as in-network. The person on the other end of the line seemed positive, until she heard that my insurance is a Medicaid plan. She said that they don't work with out-of-network Medicaid plans.

After that disappointing call, I left voice mail messages with staff at Dr. Marga Massey's office and staff at NOLA. I thought about not mentioning Medicaid at all, figuring that I'd have higher chances of receiving returned calls, but I did mentioned it.

I'm hoping to receive return calls Monday from Massey and NOLA. I'll post their willingness (or lack of) to work with out-of-network Medicaid insurances.

LMichele

Hi Outdoorsy,

I am so sorry for everything you are going through... I have zero knowledge about medicaid or networks, sorry. I popped over after reading your post on 2017 DIEP. I am just chiming in, as a patient of Penn Medicine in Philadelphia. I just had my surgeries in last 3 weeks and I am feeling pretty darn good. I know it's a big office and a teaching hospital so you can get lost in the works. But I would encourage you to try again, esp if they are in-network. If there are doctors in NY and NOLA who can help you I really think there is one in Penn Medicine who can. I just underwent a new technique being developed by Dr. Kanchwala, and I couldn't be happier with the team. Let me know if I can help in any way. I will be there Thursday to get stitches out maybe I can ask the nurse for advice on navigating from out of state...

best,

Michele

Outdoorsy

Thank you, LMichele. I'm so happy for your successful breast reconstruction and that Dr. Kanchwala was able to just use your tissue without the addition of implants! I'm looking forward to the day I have my bilateral mastectomy and my current implants removed! Was your surgery a "regular" DIEP or one that extended out further to allow for more tissue to transfer? And I think I remember reading that you are fairly thin. I'm 5'6" 133lb and am hoping I have enough tissue in one spot to just have flaps taken from one area and not two. I'd much rather have the DIEP or the PAP flap surgery -- not both. I sure do wish my body did better with implants, because that would easier to have insurance cover. Oh, and NOLA wouldn't work with me at all, because they do not work with people who are insured through my particular out of state plan.

Wishing you a speedy breast reconstruction recovery,
Outdoorsey