NOLA in September?
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Spring, how far are you from Wilmington? Thinking....
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Thanks everyone for all the feedback!! I am in the Raleigh area where we have several major hospitals, so I really felt I was in the epicenter of healthcare. I am being treated at UNC and I am THRILLED with my cancer care and their hospital is out of this world. My husband and I tease that they must train everyone at Disney because the level of service at every level is awesome. As a parent of an NC State student it is rough to cheer on UNC, but I have a new respect for them.
However looking back, the flashing red flags were there and I foolishly ignored it. During my consult with my PS I asked him what the deal was with NOLA and why did I keep reading about it. He said they did excellent work and had a great business going, but then told me he would hate doing the same surgery everyday and wouldn't find it challenging to be in a rut. Hmmmm, I wasn't asking career advice. In my cancer stupor, I brushed off the comments and went on full steam ahead with blind faith. There were other things similar to this....nothing terrible, but I would get answers to my questions from a doctor perspective, not a patient. In his defense, he was as crushed about my surgery as I was. He has never had a patient lose both flaps (one was 10 days later) and he was calling former colleagues at Sloan Kettering for guidance on what could have gone wrong, as well as consulting with my entire treatment team. He is willing to do whatever I prefer, but not another free flap. My surgical oncologist works with him extensively and said he had never seen this either.
When I asked why he recommends the lat flap and implant, he just says I'll be happier with it. Now that I am not in the "OMG, I have cancer" stage it's easier to slow down and really research, and that kind of answer just isnt good enough.
Question: Does Dr. Massey work in NOLA and Charleston? Seems I see her name on here a lot and I'm confused. NOLA for stage 1 and Charleston for stage 2 would certainly make my life easier. Are the centers affiliated at all?
I so appreciate everyone's input and guidance. I hope some day to be able to pay it forward as well!!0 -
Dr Massey is not in business with the doctors at the Center, but she does operate in NOLA at SCSH with Dr Sullivan and maybe the other docs too.. I don't know.... I had read that she is performing almost all of her stage I surgeries in NOLA now.. I guess she uses their facility and has some sort of arrangement, as they do have a few operating rooms, and enough beds. But her "people" are different than the NOLA docs. So, you don't call the Center to book an appt with her. She also works in Charleston and has an office in Chicago.. and goes to Utah??
My local PS wanted to do lat flap and implants, and when I mentioned NOLA he poo poo'd their advertising, as if it were gimicky... I call it jealousy.
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Betsy, you are a wealth of info. Thank you!!!!
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Hi DianneNC, I had my consult with Dr. Massey in Charleston but she said she prefers to do her Stage 1 surgeries at NOLA. Stage 2 can be done in Charleston. That will be my plan if needed after stage 1B. Like I told you in a PM, I don't think you could go wrong with Dr. Massey or any of the surgeons in New Orleans. They have high succeess rates and do everything in their power to make you happy. My best friend in Florida was just diagnosed and Dr. Massey has taken over her case. I just wanted to make sure that my friend knew all of her options. Please ask anything you want to know. There is such great info on this thread.
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Nordy - why do you ask about Wilmington? We go to Holden Beach - 40 minutes from there. I have a kid at UNCW and one who has already graduated from there and went on to do a Masters in London. Are you coming this way?
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DianneNC - My husband is a huge Wolfpack fan, but guess where my youngest goes to school? Yup - UNC!! A House divided!
I am happy to talk with you if you want to exchange phone numbers, or if you want to pm, and I'm sure that Spring would be happy to as well. (Also happy to meet up with you if you would care to.) Spring is the reason I went to NOLA - I found out about her (Spring) through a mutual friend, who is another survivor but who didn't have a MX, and Spring lead me to NOLA. I have never regretted it. My boobs just celebrated their first birthday! (I had implants for 4 years prior that had become intolerable). Anyway, here if you need me . . . gosh we could even be in the same neighborhood! Also, I had looked into the local PS's here at UNC and Duke, and still chose to travel to NOLA. I am so sorry for what you have been through, but I have faith that eventually you will have a good outcome, whatever you decide.
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Thanks Amy! I love seeing all the NC folks here!! It makes me feel better to know I'm not crazy to want to travel for this surgery.
I'll pm you tomorrow with a bunch of annoying questions. Chemo brain is getting to me and it's time for bed.
Oh, and happy birthday to your boobs!!0 -
Nordy,
My daughter is also at school in Wilmington NC, and that is about 2 hours from Raleigh. If you come here, we'll have to get all us NC sisters together for your visit!! I'd come to Wilmington to see you, and Diana too. You remember her, right?
Dianne, let me know if I can help. I find that statement about "being bored" from the surgeon sort of like shake my head and roll my eyes!!! I thank God all they do is breast reconstruction down there in NOLA, and take it to a new level all the time. That's what we need from a patient perspective. Good grief! We're not there to entertain the surgeons! ha!!! It is unusual for a flap to fail 10 days out. In NOLA, they have excellent monitoring, with doplars, and often, when something is going south, they can go in and fix it.
Many of us have found that local PS's will recommend surgeries they can perform. They pooh pooh DIEP and GAP - and generally state it's a long surgery and difficult recovery. However, my hardest recovery was when I had the MX and immediate recon with implants and alloderm (as a temporary measure) to get me through rads. The spasms, etc. ahhhh! I think Betsy is right, jealousy.
Sounds like you're on a journey! Hopefully we can help and support you...
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Quick question for a friend - Have any of you had, or heard of Dr. Trahan being lead surgeon, at this point in time? My understanding is/was that he assists.
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I recall a few ladies on this thread had Dr Trahan as their primary.
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Kaitsmom- yes! I believe he has started taking on his own caseload.
Diane, I agree with Spring about the eye rolling and nodding the head in regard to your PS's comments. Bored? I would not think they are since they have so many challenging patients that have had failed reconstruction or horrible outcomes elsewhere. I would think there are always new challenges for them. In addition to that - they think out of the box. I believe they were the first (and certainly do the most) to stack flaps to get a larger breast size. They were the first to open the only hospital in the world dedicated to breast reconstruction. They know how to take care of their patients that travel by arranging all their transportation to/from the airport and appts. And they also cater to the caretaker by providing meals and a murphy bed in your room while you are in the hospital. And these things are all just secondary to the absolutely fabulous work that they do. Dr. Sullivan was my surgeon and of course, I just think he is the best, but anyone here will tell you the same about their surgeon. If it is any consolation, my local PS now sends any patients looking to have a free flap down to The Center. And that is because of the fabulous work that was done on me. You will be great!
Spring and Kaitsmom (and of course I remember your beautiful Diana!) - my hubby is doing the Beach to Battleship in... I think October. I was not planning on going with him, but I would love to see & meet you all! Soooo, am thinking of going. Race day is a long day for me (& him)! I would love some distraction! It is too early yet to decide, but I will let you know if I bite the bullet and head east!0 -
Hi, could anyone clarify how many nights you they keep you in the hospital (BMX & Stage 1 DIEP) and how many you stay at a hotel? Maybe four nights in the hospital and three in hotel? I'm sure I they told me and I wrote this down or read it somewhere, but can't figure out where. I do feel like I've hit the lottery since it turns out my sister (a nurse) is available to come stay with me for the hotel part, just can't remember how many nights that will be and she needs to finalize arrangements at work ASAP. TIA!
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Jenifer - the norm is to fly in one day, have pre ops the next, then surgery the next. I believe the norm for being in the hospital is 4 nights, unless you are like me and walk around like a mad woman and get discharged a day early...
. Anyway, you have to be in town until your post op which will be one week after your surgery. You can fly home after that (usually the next day unless your post op is pretty early morning). Hope that helps!0 -
Okay, so for you, you would likely fly in June 3rd, have pre ops the 4th, surgery the 5th. This would set you for discharge on the 9th - and you would need someone to be discharged to and to stay with you for the rest of the time. Your post op would likely be the 12th and you could fly home the 13th. You can double check all the dates with Katie, but that is generally the norm. It will be here before you know it and you will be great!
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Jenifer- For stage one (GAP flap) I was in the hospital for 3 nights - Dr. D. was my doctor . I don't think I was discharged early (at least no one told me that). My postop was a week after my surgery date. As Nordy said- I flew in one day, had preop next, surgery was the day after that.
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Thanks, you ladies must be night owls! I'm on the west coast and it's almost midnight here.
I have an email that says that my pre-op is on the 4th, surgery on the 5th, and post-op is on the 11th, six days later (instead of a week later). I think that Katie told me I could go home on the 12th, but now I'm not so sure. I was planning to make my airline reservation tomorrow to get the two week advance price, but maybe I'd better wait until Monday to clarify.
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Lol! I AM a night owl!
Besa - I am glad all went well! It is good to see you on here!0 -
Dianne- You are not crazy at all! But like Downey said most of us have had our sanity questioned. (c: You can't go wrong with any of the NOLA docs. The one thing I would add about Marga is that I found it very comforting to be able to see her in person for post ops. I'm in Chicago. It isn't necessary, I just like the face to face. The very best of luck to you.
Healing vibes to all in recovery.
Summer came early, woot!
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Nordy - keep us posted - I would love to meet up with you if you come with hubby! I had a friend who's husband did the Beach 2 Battleship a few years ago.
jenlee - Can you fly Southwest from wherever you are? It's a comfort to know you can change the dates and pay only the difference in airfare and not a change fee.
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Jenifer.. They may be giving you a post op a day early due to schedules... but if you fly home the 13th and your post op was the 11th, then you just have an extra day in NOLA... not a bad thing. I stayed an extra 4 days... So for me I flew in Tues, pre-op Wed, surgery Thursday, 5 nights in the hospital, discharged Tues, post op Thurs, flew home Monday. Personally, I think it was comforting to me to have the extra days built in, just in case. There have been women who are discharged and a day later need a little extra something, so I would err on the side of too much time rather than not enough.
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DianneNC, welcome! I read your posts, thinking that it sounded just like me a few weeks ago! (Not the failed flap part, but just the questions about whether to go to NOLA or not.) As you've seen, everyone here is SO helpful and informative. Given what you've experienced, I would jump at the chance to go to NOLA and have either Massey or Dellacroce or Sullivan operate on you. I hope you have clarity soon as to what is best for you.
I have a random question for folks... what did you do at home for sleeping? Use a recliner? Rent a hospital bed? Or did a certain pillow arrangement work in bed? I'm trying to decide whether it's worth it for us to rent either a recliner for a month to sleep in (we don't have one) or a hospital bed. We have a queen bed that is low to the ground and my daughter often finds her way into it at some point during the night. I may be having DIEP plus hips so, any tips on BEST sleeping ideas would be appreciated.
T - 10 DAYS until surgery!! Yikes!
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Once discharged, I was sleeping in the bed at the hotel with lots of pillows to keep me from rolling over.. I found it to be comfortable... Once home, my own bed was less comfortable, and I slept in our recliner for a few nights, until a new bed arrived (we needed one anyway), and again I was in bed with pillows... One thing I did find helpful is that we owned a wedge pillow from years ago when my husband had ankle surgery and needed to elevate his foot... I used this wedge pillow under my knees, and it was great.... After DIEP you aren't going to want to lay flat on your back with your legs straight, so perhaps sleep in your bed, but get a wedge for your knees.. I found it to be the most comfortable (and I had hip and DIEP).
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Thanks for the welcome, Jen. I am planning to contact Dr. Massey tomorrow to look in to the insurance coverage. From the looks of things, I will be in good hands with any of the three doctors. Since I will probably not be able to meet any of them personally before surgery, I will possibly let the insurance coverage be my deciding factor between the Center and Massey. If all things are equal, I may just have to flip a coin to determine which is best! I have not heard one single negative thing about either one.
As for the sleeping, I looked into renting a recliner since we don't have one either. I ended up buying one at Big Lots for about $200 with the intention of giving it to my son for his college apartment as soon as I healed. It is not the most attractive piece of furniture I own, but it has served me well and ended up being the same price as renting one. It is still here waiting for me to recover from the next surgery....good thing I didn't rent! It seemed foolish to buy "disposable" furniture, but that's the same price as 2 Merenas.0 -
DianneC - I am an operating room nurse and a patient of Dr. Sullivans. The surgeon can do the most beautiful work but if the care after is not top notch also there can be trouble. The nurses at NOLA are specialized in breast recon and spotting issues immediately.
I am an extremely complaex patient. Had Hodgkins Lymphoma 23 years ago with radiartion that has caused many problems with calcified vessels and other issues. Had to have part of my stomach removed 2 years ago from another cancer. The docs at NOLA - surgeon and anesthesia - did not bat an eye. They made an appropriate plan for me coupled with the awesome nursing care and I have done fine.
My local PS whom i work with all the time trained with some of these guys and she does not do flaps as the nursing care after is not specialized enough in the hospital I work at. She follows any of us that choose to go to NOLA.
I had Dr. Trahan as an assist in my surgeries and frankly I look pretty darn good
Surgeons of this caliber WILL NOT allow someone who is not ready to do anything. I see it everyday. If Dr. Trahan was not top notch he would not be there. During my initial surgery Dr. Stollier had a doc down from NY watching his nipple sparing technique and she came in on my surgery.
I am so sorry that you have had such a long journey in all this. If you choose NOLA you will have the best chance to have a wonderful outcome. They are the whole package.
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need2new - I second what you said about the nursing care. I am not a nurse, but I know it must be extremely good and very specialized, since if the flap is going to fail, it is usually in the very early days, and by paying very close attention to the doppler, etc., the nurses could recognize early on if a problem was occuring and make efforts to try to save the flap. I got better care in NOLA than I could have recieved in an ICU elsewhere.
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Re how long you stay in the hospital: both times, I ended up spending one more night in the hospital than predicted and neither time did it affect my fly home date. I was happy for the extra time to feel ready and they won't push you out.
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Ladies. I have made a decision. I am going to fight my insurance company on this. I may need to go all the way to the top to be heard, but I intend to do it. Please send whatever positive vibes, prayers, ohms, insurance approval dance - whatever, I am not picky! my way. Many of you know that it has been one battle after another with them the past few years. Once in a while I win, but I have lost too. This time I managed to stay cool and calm while I talked to the nurse that helped with the decision to deny my testing this time around. I discovered through our conversation, that they had NO idea that I had cellulitis last April requiring IV and oral abx to resolve. So, I have been researching and plan to be armed with as much info as I can find. I may even write to Dr. Becker to see what she has come up with. If anyone knows anyone that has had vlnt that has been covered by a major insurance carrier - please send them my way! That was one of the things that insurance had stated was part of their denial - that no major carriers were paying for this surgery. Anyway, just a shout out for help! Thank you!
Besa and Geralynn- i hope you are both feeling well today!0 -
Things are hopping here lately!
Nordy, you have my prayers to get through this insurance fight. I find it stunning that your insurance nurse did not have your full insurance medical records to make a ruling. Just stunning. To me it speaks VOLUMES about how they must be operating. How could your medical insurance not have your medical records fully accessible to support coverage determination? (rhetorical question). I'm so glad you kept your cool in communicating with her to uncover the key element of cellulitis that she seemed unaware of. It reminds me of my very first dealing with insurance anything in my mid-20s. It was for my car that was totalled. I had the used car for only 6 months and they offered me maybe half of what I just paid. I worked in admin for a rental car company at the time. I zoomed on over to one of my managers. He suggested I send my insurance contact a copy of the blue book value and ask why they lowballed me so much. Turns out they lowballed me by claiming they mistakenly took the basic value of my car model when I had a fully loaded model. It burns my butt when you know there is no way these professionals can make such basic mistakes, that it either has to be gross mismanagement or intentional deceit. I know the example is far less, but the core behavior is the same. I hope you are able to find the practical support you need to see this through.0 -
Nordy -Why don't you ask the people who take care of Dr. Massey's billing/health insurance if there are companies that cover vlnt. They should know.
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