Charleston Bound, part 2

ketch

I did a phone interview with Dr. Massey, but NOLA was out of network for me. She said they did not balance bill though. Ultimately, I chose Dr. K. It's 4 hours from my house & in network.

I had my MX at Roper. It was ok, staff was great, but as someone upthread said, the food was horrible. I was just there overnight but remember the cream of mushroom soup was half salt! East Cooper is, by far, the better hospital. New, clean, security & the nursing staff there is the best I've ever had anywhere. I'll see them again in Dec!

jacee

Dr Massey was out of network for me. I have Blue Cross/Blue Shield. They said I could go out of network if there was no surgeon within 30 miles of me. So I researched and found out there were none. I filled out paperwork requesting an in network exception. Then sent the paperwork to Dr. Massey's office. She filled in the surgical codes and mailed the paperwork in to BCBS. It was approved within 2 weeks. She was paid in network rates. The in network exception included the assisting surgeon, Roper Hospital, all scans, pathology, anesthesia, etc. It was a lot of phone calls and record gathering, but I did it during the 8 months of chemo and rads. The only thing I had tp pay for my Stage 1 was $200 for private room charges.

PinkHeart

Looks like I am still on for surgery so PMd my surgery date for posting.

Nov. 15: PinkHeart, Bilat SGAP, Stage 5 (BRAVA & Fat Grafting), Dr. Kline, Charleston

Received my BRAVA device from Dr. Kline the other day. Took it to my PT-CLT appointment and opened it there because she was interested in seeing. We laughed hysterically when we saw it! Not too sure I'll be laughing much when I have to start wearing it 12 hours a day. Dr. Kline also ordered the "turbo pump" (which is actually a wound vac) to get optimal benefit and faster. I should get that this week.

I have a pre-op appointment on Nov 14. Surgery morning of 15th at East Cooper and will be in hospital for one night. Will be driving and staying in Summerville as usual.

Looking forward to hooking up with Catie2013 and anyone else who is in Charleston!

rdgc

PinkHeart, I'd be interested in knowing what your progress is with the Brava. How/where do you buy one and how much are they? Dr. Kline mentioned that I might want to consider the Brava...If you buy one from Dr. Kline, do you also have to have fatgrafting from him? My local PS can do fat grafting but not Brava coaching, since it's not covered by insurance. If I may ask, are you using Brava to fill in space around your SGAP flaps or to get bigger in general? Also, I've heard that flap surgery is beneficial to people who have had radiation because it is a healthy flap feeding the surrounding radiated tissue. Can you share your experience about having a flap in radiated tissues? I wonder if you can tell if they are doing good things for your tissues. Thanks.

lbrewer

rdgc,

Flaps after radiation are fairly common. Your choices are very limited because the radiation damages the skin so much. Which unfortunately they often do not explain very well beforehand! The implant failure rate is about 70%. Latissmus dorsi reconstruction is probably the most common route; they use a very small implant and take your latissmus dorsi muscle to help reconstruct. I did not want to sacrifice the muscle so I chose an SGAP. I had already had a DIEP on the other side so that was not an option. My PS at home told me I would not miss my LD muscle, but I figure God put it there for a reason! But that's just me! I had the first stage of the SGAP in July and will have more revision in January.

If you're a candidate for DIEP, that is generally considered the "gold standard" these days. I can't tell from here if you had a bi or uni but I tell everyone my choice would have been to have a DIEP on both sides if I had to do it all over again.

lbrewer

Does anyone know if Dr. K does Juvaderm? I want it done for a wedding and I might as well get it while I'm on painkillers!

MartyJ

You may be able to find that out by following this link to their practice: East Cooper Plastic Surgery.

PinkHeart

Marty,

That is an old web site from over a dozen years ago when Dr. K & Dr. C first went into private practice. Here is the correct link:

http://www.naturalbreastreconstruction.com/

lbrewer,

Your best bet would be to call. I saw some brochures for skin rejuv when I was there. I sure could use some rejuv myself.

lbrewer

Personally I think every woman who gets BC and treatment should get one free vouluntary procedure. I got my eyelids done as my "bonus" after my firsrt bout with BC.

PinkHeart

rdgc,

The price of BRAVA device is ~$800. If you want to get through the treatment faster, instead of using the little hand pump that comes with it a "turbo" device (wound vac) can be used. This can only be purchased and ordered by a physician. It is several thousand dollars. Dr. Kline is having me use this for my specialized treatment with no charge. He and Dr. Craigie went through a brief training in Miami with surgeon who pioneered Brava.

The BRAVA phone number is 800-407-5304 and website is www.brava.com You could also network with other Brava patients at www.fatgraftpatients.com

I had bilateral SGAP because I am very thin.

I had implant failure from SEVERE damage from radiation as well as axillary cording caused by removal of 19 lymph nodes. The cording attached in side of chest wall and runs through axilla up to my elbow. I had a dozen of them at one time. Also had lymphedema in upper right quadrant and right arm. A lot of these major issues have been resolved thanks to expert skills and compassion of Dr. Kline and my physical/lymphedema therapist. My PT-CLT therapist was able to release the dozen or so cords except for the evil mother cord. A doctor at Johns Hopkins made it worse and more cords grew down to my wrist. Dr. Kline took a different approach in surgery on it and I gained much more range of motion, however I do still have mild pain from the evil thing depending of physical movement.

Dr. Kline also did a lymph node transfer nine months ago, and I have not had any lymphedema swelling since!

Dr. Kline spent 3-4 hours doing major repair work from rads damage before he moved on to performing the SGAP flap transplant. So my first stage surgery ended up being 12 hours. He repaired pec muscles, meticulously removed TONS of scar tissue, Alloderm that was used for implants that failed/bunched up and got fried to my chest wall during rads, and has done fat grafting to the damaged area to help with healing.

The SGAP flaps also provided an amount of healing to my damaged area, but Dr. Kline ordered 30 days of HBOT-hyperbaric oxygen therapy treatment where I had to lay in a chamber/cylinder every day for 90 minutes (with drains still in, and a still tender SGAP butt!).

Fat grafting is being done for symmetry and for healing in radiated breast. I have very little fat to spare, so instead of traditional fat grafting, he is trying the BRAVA with me since it is known to increase survival of grafted fat. Also, the BRAVA promotes more blood flow to the breasts/chest area which should also help in tissue healing.

I will be about a B cup when done. My failed implants were a C to small D.

I know a woman who was a AA and had bilateral mastectomy. They put in tiny implants during surgery with no need for TEs. She did not have radiation. She is going to have revision surgery but I'm not sure why.

There is one plastic surgeon in my city who is doing fat grafting with BRAVA and part of the study. However, he ONLY does it for cosmetic breast augmentation patients and accepts no insurance.

Dr. Greenburg in San Francisco is very involved with BRAVA. She has an excellent blog. You may want to check her out.

Hope this wasn't TMI.

What is your diagnosis? Did you have lymph nodes removed? Nipple sparing mastectomy?

With your desire to remain an A/AA cup and if you have little or no rads damage, I personally would go the BRAVA route. It's still quite a commitment and you will have multiple surgeries. But, you won't have anymore "cutting and sewing."

I only have enough fat to have one period of wearing BRAVA device followed by fat grafting surgery. It will be my 10th surgery (and last) since being diagnosed in June 2011.

Please feel free to PM me, and much luck to you in your personal decision.

rdgc

PinkHeart: Thank you for your info. It was not TMI at all! I want to know everything I can from all angles and viewpoints!

Dr. Kline seems like a nice person, being so generous to let you use the wound vac at no charge. I've exchanged emails with him and he recommended a possible SGAP or that I consider Brava, after he looked at my pics. I've also talked to his nurse and she was very generous with her time in answering questions. And I'm so happy for you that your problems seem to be resolving with Dr. Kine's expertise!

How great that you're getting HBOT. That's supposed to be very good for you, from what I understand. Does your insurance cover that?

I did email Dr. Greenberg but she will only give advice after an initial appointment. I am so grateful to people like Dr. Kline and Dr. D (Dellacroce, from NOLA, with his "ask the doctor" advice forum) who are willing to talk/email you without first charging you. There is so much to know! It is interesting that while Dr. D does not recommend fat grafting as a means of reconstructing a breast at all, Dr. Kline is open to it. The problem is, being invented in 1999, the Brava has not had the chance to stand the test of time. And if we only had clinical trials to prove or disprove Brava's effectiveness, that would make decision-making so much easier. If it's true that Brava can create a nice breast, at least in non-radiated tissue (min is radiated), I'm still worried that it might get resorbed after 10 or 20 years. No one really knows because no one's had a brava breast for that long.

My diagnosis was ER+ PR+ HER2-. I had 2 lymph nodes removed, a nipple-sparing mastectomy, chemo and radiation.

I am not the type of person who minds commitment, but I would very much mind if Brava didn't work. There's nothing worse than doing a whole lot of hard work with the promise that it will work and it doesn't! Especially with such a major decision, and in light of the fact that you are depleting your fat stores through liposuction!

A PS I saw recommended that I try fat grafting for 4 surgeries to see what happens and we "cut our losses" if it doesn't work out. But, being petite yourself, you can understand that I wouldn't want to give up too much fat through liposuction. On one hand, I'm happy that my local PS and Dr. Kline are willing to follow me on the fat grafting journey, should I choose to take it. On the other hand, Dr. D is very much against it... But then the cutting and sewing is so extreme... But then once a flap's done, it's done... But then... As Charlie Brown would say, "AUGH!" There's a lot of going back and forth...

PinkHeart

Rdgc,

I am fortunate to have insurance that covers everything. Only $1,700 deductible/out of pocket per year and zero co-pays, and can go anywhere I want (except of course not to PSs that don't take any insurance in first place). No way could I have paid $35,000 for HBOT. Dr. Kline is one of few top microsurgeons that accepts all insurance.

Please know that Dr Kline is 100% devoted in his pratice to flap surgeries and breast cancer patients only.

Like Dr D, he does extensive lipo/fat grafting for Stage two surgeries to give symmetry and shape. So Dr D does lots and lots of fat grafting but just to give shape and symmetry to his flaps.

Since you are only needing one breast, and a tiny one at that, that will probably be the first time for Dr K to suggest that, as far as I know. He is def pro-flap.

Have you consulted with Dr Khouri?

rdgc

Hi PinkHeart: I have not consulted with Dr. Khouri yet. I did call his office and talked to his receptionist, but his location is far... Can you tell me what kind of fat grafting Dr. Khouri does? I know there's a lot of different kinds and I wonder which kind is the most effective. It would be interesting to compare Khouri's, Kline's and Dr. D's methods with what my local PS does. Thanks--rdgc

bethcw

Hello my Charleston friends! I think I am finally over my superstition enough to give you guys an update :-)

2 weeks ago today, I had a left side PAP flap with Dr. Craige and Dr. Allen assisting - talk about the dream team for surgery! My flap is still surviving, and I am taking things one day at a time. For you newbies, this is my third left side flap attempt. First was SGAP in January, second was stacked DIEP in March. Left side was my cancer, radiated side. I also had my right side done prophelactically with my SGAP. I have had absolutely no problems with my right side. This time, I stayed in the hospital for the week (6 days total) after surgery, and spent another week at a rental house that was about a half a block off the beach on IOP. Dr. Craige and Kim (the PA) were awesome as always, and we have all been super cautious this time with my high risk history. I have also done HBOT before this PAP flap, to help with my radiated tissue damage. I also spent an in person visit with Dr. Khouri this summer discussing BRAVA when deciding what I was going to do next. I decided to give another flap a try, and use the BRAVA as my last resort. I can answer some BRAVA questions if anyone has any. I can also give advice on the differences/experiences with the different types of flaps now that I have experienced the SGAP, DIEP, and PAP, lol. I don't believe the NOLA doctors are doing PAP flaps that much yet. Dr. Craige and Dr. Kline have been in network for my insurance, the NOLA docs were not. Also, Dr. Massey told me she was out of network when she is performing surgery in NOLA (all stage 1's now). That was this time last year, her status may have changed in NOLA since then. I started out talking to Dr. Massey and eventually went in another direction because of the insurance issues. I know a lot of NOLA ladies take that leap of faith that the insurance will all work out, however that is just not in my nature.

In my opinion, the PAP has been the most tolerable pain wise, except for sitting on the toilet (sorry if that is TMI). For my friends who have been following my previous heartaches, I think we can all breathe a collective WHEW! I have missed being on the boards more lately, but I have been super busy trying to get everything scheduled and was really superstitious this time. I told very few people that I was going this time, just didn't want to jinx anything. If anyone has specific questions, feel free to PM me or post here. Talk to you ladies soon!

Beth

cascader

Beth, so so so great to hear from you!!! I have been wondering how you were doing. You did it!! Wow! You are one strong amazing woman, and I am so happy for you. Continue being cautious and please keep us posted. BIG hugs!!

slh_tn

Beth, I am so happy for you too! What a blessing. Your positive attitude is an inspiration to all. Wishing you a easy recovery.

PinkHeart

Beth,

This message comes with a huge smile and hug for you!! Sending a prayer of thanks and a toast to you, too! Not to mention a toast to Dr. Craigie and Dr. Allen. Amazing docs!

Yes, Kim, PA is so nice to work with. She is seeing me for and coordinating my BRAVA treatment and keeps me calm.

It was great meeting you for lunch in July, and do hope to see you again someday if we all can get together at the beach.

Catie2013

welcome to the land if happy PAP! The toilet problems will soon be over, I found leaning to one side or using the "go girl "ladies urinal from Amazon worked best - tried it outin shower first - but it will pass. I'm 10 months out from my PAP and find I forget that I've had it more than I ever did with the SGAP. Continued best wishes and prayers for healing and outcome!! Dr Allen works so well with Dr K and Dr C - I love their continued relationship beyond mentor / mentee!

Beth I too hope we all have the first of many reunions in Charleston next fall!!!

So glad you shared with us!!!! Woohoo

Hugs

Catie

rdgc

Beth: That is so great that your flap is doing well! You really deserve to have it work out! All the best.--rdgc

mags20487

hooray for you Beth!!! third time is a charm!

Has anyone had a hysterectomy in Charleston while doing a stage 2? Find out tomorrow if I will be needing to have the rest of my girlie stuff taken out and Dr M has recommended Dr Terry in Charleston if I decide to combine the 2 surgeries.

Maggie

lbrewer

Mags,

I had a hysterectomy here in Orlando at MD Andersonwith Dr, Jessica Vaught.

I can't rec commend it highly enough. It was done robotically assisted. I have 2 small scars about the size of mosquito bites. Absolutely no pain or down time.

PinkHeart

Catie,

Our surgeries are same day. What days will you be in Charleston?

A friend has offered me a plane ticket so now I can't decide whether to drive or not. I like having my car to come and go and not have to rely on my friend and not being tied to plane schedule.

Who is first in OR?

Dr K said I would be about three hours.

philomene

I've been looking into doing a consultation for a PBM with DIEP with Dr. Massey. Her office has been very friendly and helpful, but I'm a little disconcerted by some of the paperwork required for a simple consultation. It requires that you agree to let Dr. Massey use your medical information for publication and other informational purposes, and it also requires you to give up all rights to the use of your photos and agree that Dr. Massey can use them freely for whatever purposes. As someone who has features that could be identifying even in a photo without a head shot, this makes me really uncomfortable. Has this been an issue for anyone else? Is this standard paperwork? In other words, will NOLA or PRMA ask for the same thing?

MartyJ

I think that paperwork is standard. Dr. M is my doctor and I trust her totally. She is one of the only doctors that doesn't give free access to her before/after photos online - you need a password from her office. She is very sensitive to privacy and you could explain to her why you believe you would be easily recognized. I have seen her presentations and those of other docs - I have seen photos of friends and didn't even realize it. Consult with her, share your concerns. She is a wonderful, caring, compassionate and highly skilled micro surgeon - she will listen. You can't go wrong with Dr. M!

Cherrie

I second that. She is my doc also and you can TRUST her.

Downey30

philomene, I also completely agree with Marty and Cherrie. She'll take wonderful care of you.

jacee

Dr. Massey is one of a kind. She will use the utmost professionalism if she uses photographs. If you don't want yours used, I know she will honor that. She also does much research and clinical trials. She asked me to complete a questionnaire at my consult to be used for research. She really believes in using real cases with real outcomes when she presents information to others. She doesn't want to sugarcoat it. You will be reassured the minute you meet her, I think!

GointoCarolina

I have never had to fill out a massive amount of paperwork for a recon consult and I have had several,both in person and by phone.I had a phone consult with Dr.Massey,I sent her photos,there was no paperwork required,so this must be something new.I was not asked for anything like this from Dr.Kline for my phone consult other than pictures.Of all the doctors I sent photos to,Dr.Kline was the most sensitive and seemed to understand how hard it is to put it all out there on the internet,so to speak.

Catie2013

I also never had to fill out any information before talking to Dr. Kline, his office manager Gail, or any of the people at Dr. K's office.

Pink, I don't know who is up first, I thought you told me you were? I will find out next week when I visit Dr. K in person for my pre op - combining it with my check up with Dr. B, which I hope to make a yearly thing (if not more - his call) for my annual breast exams. I want to have an expert in the natural recon do my yearlies. Thus hoping to have an annual 'Charleston Reunion" going too with others from this forum!!! 2014 here we come.

Beth - hope all is continuing well for you.

Hugs to all

Catie

ketch

Yea! Beth! I've followed and read about your previous attempts. So glad you kept this flap!!

I've thought about asking Dr K to do an eye lift while I was under this next time. Hopefully, I'll be through after this.

As far as the photos go, I'd expect any doctor to be trustworthy with the pics. At this point with the surgeries, LE treatment, tests, etc....I'm not the least bit apprehensive as to who sees what!! In fact, I'm kinda proud they look this good and we're not finished yet!!