Exchange City
Comments
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Kate -- if they say the code is wrong, can you ask them what the right code is? Or is it some sort of secret? Honestly they work so hard to deny us it makes me crazy. Have you tried mentioning your legal right to reconstruction? I'm pretty sure the intent of that law was NOT that you live with pain and CC. I would call the doctor's office back and ask them what code they are using and tell them the issue is the code.
Diagnosis: 6/2/2009, IDC, Stage IIa, Grade 3, 1/17 nodes, ER-/PR-, HER2+0 -
Lilah and Cindy- I think it is a secret- and a closely guarded one! The PS's office keeps insisting their code is right. The insurance company keeps insisting it's wrong but won't tell me what the right one is! I requested twice to be transferred to a supervisor at UHC but they kept putting me off. I will call again tomorrow. (Squeaky wheel?) Good suggestion, Cindy, on how to word it- how would they suggest I fix the pain? I'm going to use that one! I think it's like the Grisham novel- Deny, deny, deny and hope I go away! The hardest part, for some reason, is having to tell my story over and over again. It's bringing up so many emotions for me right now!
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Kate -- I would also try to get the PS's office to talk to United Healthcare. Ask if you can speak to someone at UHC who is willing to receive a call directly from your doctor's office. Then get a name and phone # where your doctor's office can call. That alone ought to warrant a bump up to the supervisor. And be nice! Squeaky but pleasant gets more mileage in the end.
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Kate: Sometimes I just keep calling until I get someone different--keep asking for a supervisor, too. Talk alot about the pain and that you are a BC patient, too. good luck!!!
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Kate33: Apparently many insurance companies assign patients with a diagnosis such as breast cancer to a specific case manager. I was unaware of this until I received a call from mine a few days before my BMX. She told me to contact her immediately with any billing or authorization questions. She has actually been really helpful and has cleared up a number of billing/auth issues on my behalf (Oncotype DX testing and also a rather large bill from the pathologist for the mastectomy pathology). Perhaps it's worth asking if you have a case manager the next time you call United Health Care???
Also, you might check with the Miami Breast Center to see if they have breast cancer navigation services. This is sometimes a nurse or a whole team of people who act as patient advocates and might be able to steer you to someone who can help.
You sound so frustrated - it's hard enough to deal with all of this and to get a plan in place. So upsetting to get the rug yanked out from under you at the last minute. Best of luck!
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I have United Healthcare and have a case manager. They issued me one after my chemo completed. Ask for one. You may have gotten lost in the loop.
Terri
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For those of you still waiting on your exchange how much exercise can you do? I am 5 weeks from my delayed TE surgery and have not done anything but some stretching for flexibility and I gained 5 pounds.
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Lillian--thanks for the clarification. That makes sense.
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vmudrow--ditto thanks for the clarification and support. Now I understand.
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Lillian - yes just going 50ccs bigger than the TE made the difference - the implants looked the same size as TEs - just much softer etc.
Kate - that's awful. I would think the PS office would call and get it all straightened out for you - I didn't have a revision - but mine got everything approved for PBMX - I never spoke to the insurance company at all. Good luck!!
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Do most of you have textured or smooth Mentors? My doc does not use smooth. I am wondering what most of you have and if anyone has had trouble with capsular contracture with the smooth. Sorry still trying to decide what to do about my revision!
Kate DEMAND to speak to someone. It always helps to drop the word attorney
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Determined--I spoke to my PS about that issue last time I saw her. She gave me a whole history of textured vs smooth, something about at one time docs thought the textured adhered better. She said that has been found not to be true, and she prefers to use the smooth and round. She uses the round because she said the implants may shift, and if they shift then there is no change in the shape on the outside.
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Hello ladies, hope you are all well. I just had my 1 month follow up with the PS, post exchange and all looks good. Next apt. is in 4 months. He said we will know my then how much projection I will get and if I will need to have fat grafting so we will go from there. Also there is a chance that I could get scar tishue capsulation again and if so we may do some more revisions and surround the implant with healthy tishue from my back to stop that. He said it is all because of the radiation and to massage, massage, massage. DH is happy with that
. Hopefully that wont happen but at least I can look forward to a summer with no surgery, chemo, etc.Have a great day everyone.
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rowan thanks for the info. What exactly do you all do to massage? I know that sounds dumb but my PS just said to push them together and hold them for a minute. Are you actually kneading or doing something besides pushing them together when you massage?
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Carrol2 - I was cleared to resume activity about 5 weeks post-bmx/TE placement. My PS told me to start easy, I rode the stationary bike for a couple weeks, then went back to aerobics classes. PS said that basically I couldn't really "screw" anything up, as he was going to be going in for exchange in a couple months, anyway. Now, after exchange PS is very serious about restrictions for 6 weeks. I just started back to the gym and I am being verrrry cautious...call in to your PS office and see what they say, that's always the best bet!
Kate - hoping everything gets cleared up for you and the insurance company real soon...I'd be shocked if the implants you will be replacing with weren't covered...isn't that federal law now - ugh, red tape is so frustrating...keep on pushing till you get your answers!
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Determined: My exchange is still down the road, but I recall the conversation with my PS at my initial consult when I had a bazillion questions about different types of implants. He has the exact opposite opinion of your PS. He only uses smooth round implants. Smooth to allow the patient to massage and move the implant within the pocket to avoid capsular contracture (he feels that textured implants have a much greater chance of it). Round so that if the implant rotates a bit it still looks good. He feels there's too much chance of the teardrop shifting/rotating.
Seems they all have their own opinions based on the numbers out there and their own experience. Confusing....
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Determined: I just rub mine all over like I would with a sore muscle, because, technically I guess it is! Where ever it aches, I just massage the area and it seems to help.
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a question re: massage, at what point post-exchange did you feel it was time to start massaging? my incisions are healed (6 weeks out) but I wasn''t given any instruction on when or even IF I should be massaging...I go to PT and she massages my scar tissue under my arm on one side very gently, and it does feel better after..I just haven't gone for the "whole foob massage"
on myself yet. I moisturize but am so wimpy about massage so far. Also, when would capsular contracture happen? What would I be looking for if that was to happen? Thanks! 0 -
Wow, forgot how fast this thread moves! Lilah- Sent an email to my PS requesting he send a letter to UHC requesting an appeal. Just got an email back this morning from his PA saying he had done that already and it hadn't worked. Tina and ibcmets- Thanks for the info about the case manager. I wasn't aware I had one so will definitely be checking into that today. Thanks!
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fire-dancer: I'm not to the massage stage yet since I haven't had my exchange, but I just remembered something funny that came up during my (very long) consult appointment with my PS. We were discussing capsular contracture and he said that he instructs his patients to massage their implants while they're using the restroom. Weird, right? But he said, "You'll have privacy, you're just sitting there anyway, you'll do it multiple times a day, and you won't forget to do it once you make the restroom-massage connection."
Sorry, I don't believe we discussed how soon after exchange this will begin. So - I haven't answered your question at all! I had just forgotten until now about the funny image of sitting in the bathroom massaging my breasts.
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Thanks so much ladies. Okay I think I am pretty well convinced I am going to do the revision to change out to smooth. I am just so scared I won't get the same shape and size as I really like that part of it. Can you massage with Alloderm placed?
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Kate33... just trying to catch up on this thread and I should have responded earlier. I have UHC Choice Plus plan and will be having a revision surgery in June that will include a swap for bigger implants. At my initial exchange surgery, my PS had to use smaller implants due to tightness on my rad side. So the plan is to wait for a couple months and go back with larger implants and do some fat grafting at that time. UHC has been excellent with their coverage so far and I have not ever once had to call them. You got me a little concerned about the coverage on the next exchange so I am waiting for a call-back from my PS's office right now to confirm that the pre-determination benefits have been confirmed. Will let you know what I hear.
Determined... have Mentor smooth and I know that my PS always uses them. I've had these ones for about 5 weeks now, no problems at all.
As far as activity level... I am back to doing everything I had been doing and yes, trying to knock off about 10 pounds put on over the last year going though all this sh*****t!~
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Fire-Dancer - My PS was like Tina's - he said to push them up and kind of in about 5-6 times every time I went to the bathroom - how funny is that. But he said that way you remember - I think it was about 6 weeks out when he had me start this.
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Kate33... I just spoke to my PS's nurse associate who is so wonderful. She said that the state of Illinois has a "breast cancer law" and they never have any problem with any insurance company covering revisions of any kind, even with new implants because of the state law. I told her a bit about your experience and she said that unfortunately, each state is different and there is no federal law. She offered to check with the billing dept and see if they had any ideas for you on how to handle it. Will let you know if she gets back to me on that. I had my BMX, etc at Northwestern in Chicago. She also mentioned that they have alot of patients that come from Indiana and other nearby states because of that state law. Wonder if you could come here. My DH flies for an airline also so know that at least you have some free transportation.
Geesh! I had no idea that each state would legislate this separately. Wouldn't you think it would be a federal/national issue? How is it possible for a woman in Arizona and another in Illinois to be treated differently?
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Kate33... just did a little quick internet researching and found that Florida law dates back to 1987 and only covers the "initial" prosthetic device and reconstructive surgery. I think that I would call UHC and see if their coverage would be different if you went to another state like Illinois for your revision. Just a thought.
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Kate33- I had initial exchange and then 2 1/2 months later had exchange for larger implants. My insurance paid for the exchange and I live in Florida. Of course I work for a not for profit and we have self insurance. I just had a leaking saline implant exchanged and now am waiting to see how insurance plays out due to Mentor supposedly guaranteeing them and some money towards surgeon. Will be interesting mess to deal with, I am sure.
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joan888- Thanks for all the information. I, too, have United Healthcare Choice Plus but it is self-funded by Southwest Airlines so don't know if that makes a difference. I am actually on hold with them right now. They told me originally that implants are considered a prosthetic device and they will only replace them every 5 years. But according to the benefits package it says "at their discretion" they will cover the replacement sooner if the covered person's medical condition has changed sooner than the 5 years, which it has- I'm in pain.
The reason I am going to Florida is I am going to Dr. Khouri at the Miami Breast Center. He is the doctor who pioneered the BRAVA system and has his own method of fat grafting that is more successful. With the way he transfers the fat many women actually have a return of sensation. I have met with him and really want him to do the surgery and fat grafting even if it means I have to pay more. But I really do believe the insurance company should pay for this so I'm going to continue to fight it. I've decided to move forward with the surgery anyway, though. Thanks again for all the info.
Delilahbear- Good to know it's covered in Florida by some insurance companies anyway. I'll continue to look into it. Thank you so much!
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Kate33 .... our UHC Choice Plus is self-funded by AA. So probably not any different, but I have paid very little out of pocket through this whole mess. I sure hope that you can get this covered. This beast is enough to deal with without having to fight for insurance coverage. I'm meeting some high school girl friends in Phoenix later this month for a quick weekend. Maybe we should get together.0
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Kate33, here is a link I found helpful regarding national & state laws:
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I am at week 5 just had my second fill today. I feel fine just a little tight.
I have 650cc expanders that were filled to 150cc in surgery, first fill was 80cc, second fill was 70CC bringing me to 300cc now on my way to 750cc.
I was told I can now exercise as much as I want, I don't have to wear a bra if i don't want to, and i have to massage them a few times a day.
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