Any GAP-pers from NOLA here?

Flanneuse · May 2016

Hi all, I'm new here (though it's my 2nd time at this rodeo) and am looking into getting a BMX with (presumably) GAP recon at NOLA. I am hoping to connect with some women who had their surgeries there or have one upcoming. I am just getting my ducks in a row and figure I will be down there in June. I.d welcome any advice, guidance, and support about this. If there's a thread I've overlooked that covers this already, just let me know. Thanks!

Moderators · May 2016

Hi Flanneuse -- thank you for joining and posting! We're sure you'll find our Community a helpful and supportive resource!

Looking forward to hearing more from you.

--The Mods

besa · May 2016

I had sGAP recon at NOLA. There are quite a number of us here. There was an older thread "NOLA in september" with many, many posts but it has not been active in the last month. You could read through that for some info and try posting there also.

If there are not a lot of responses - there is also an active private NOLA facebook group. PM "bdavis" if you want access. (I am more computer challenged but if bdavis doesn't respond pm me and I will try to figure out access.)

Other NOLA sGAP ladies on these boards include LAstar , toomuch and many others...

Flanneuse · May 2016

Thank you so much, besa, for all this information! I will look into the FB group and hope to also connect more with you and some of the other ladies who've bee. down to NOLA. I just arranged for a consult down there next month and am excited to get the ball rolling.

besa · May 2016

for me nola was a wonderful choice -I only wish I had known about them earlier. I had a very problematic DIEP done locally following a bc diagnosis. I traveled to nola 4 years later for a contralateral prophylactic ns sGAP and revision of my DIEP side.

Nolagirl1126 · May 2016

hi Flanneuse- I have my GAP surgery (which Dr. Sullivan actually called it a HIP Flap) scheduled on 8/18. I live in NOLA, and am thankful. Have you had your consult yet? Or will you be doing in June

Flanneuse · May 2016

Hi Nolagirl, I have a consult with Dr. Dellacroce on June 13th. I will be flying down the weekend before. I feel fairly certain an SGAP is the flap recon I will be a candidate for, but we shall see. I know they also do some other donor sites (inner thigh or stacked flap?) that I am not very familiar with. I have a prospective surgery date set for July 12th. Given all the great things I have read here on the boards, I can't imagine not going ahead with it. What an amazing place to live. I may hit you up for some must-dos/must-eats for while I'm there! May as well make the most of it, right?

Flanneuse · May 2016

Hi besa, from reading the boards I can see that a number of people have had successful revisions down there, which is so great to hear about. What I find so interesting (and puzzling) is why autologous tissue recon isn't more widely known about (or practiced, for that matter). It feels to me almost like a well-kept secret, and that shouldn't be the case. The local plastic surgeon I was referred to here hasn't even heard of half the methods NOLA offers. (They're pretty much implants or bust. Pardon the pun.)

Nolagirl1126 · May 2016

Flanneuse- absolutely would love to recommend some fun places! Where are you from

Flanneuse · May 2016

Nolagirl, I will be coming down from Maine. Just booked the flight down for my consult this evening.. Excited in the weirdest way about all this. I guess it's nice to feel excited rather than straight-up terrified. Feel free to PM me with any recs!

besa · May 2016

Some ps recommend only the type of reconstruction they are technically able to do and don't mention or even disparage other options. In addiion microvascular reconstructions require very specialized training so only a small subset of ps are technicslly able to do these recons.

In terms of a ps not even being aware of some of the types of recons the NOLA docs do ---to me this is unsettling. These techniques have all been published in mainstream peer reviewed medical journals. Are they not even reading the published literature in their own field?

Nolagirl1126 · May 2016

Flanneuse, when is your consult appointment? My sister is there now. She just had bilateral MX and immediate DIEP flap recon. She is doing GREAT! The hospital is so quiet, and feels like a hotel! All of the PS are wonderful. She is very happy with result

Flanneuse · June 2016

Hi Nolagirl!

I just wanted to say that I am so glad to hear that your sister had a successful outcome from the Center! That's wonderful news. I hope she's healing well.

I just got back from my consult there last week and feel more confident than ever that it is the right place to be. I will be going back July 10th. My SGAP with Dr. Dellacroce is on 7/12.

Now just trying to figure out where to stay for the week post-surgery. I got the ok to stay in the Hope Lodge, which is an amazing thing and would obviously save us a load of dough, but several people I've talked to mentions the inconvenience of not being able to have any food at all in your room. I can't imagine dragging myself into a communal kitchen every time I wanted a cracker or maybe a bowl of soup. So I'm looking into the Homewood suites or Staybridge suites, some place with a kitchenette. If you have any recommendations regarding lodging, I'm all ears!

As much as I hope to, I doubt I'll be up for much walking around after (though you never know!), so I'm really glad my mom and I had a chance to enjoy some great food and music last weekend. What a city! Hope this finds you well!

Fe_Princess · June 2016

Hello, I had a single SGAP on April 14th. I have not spoken with anyone who has actually had one. Did anyone get stretching excersizes for their hips? This is a major surgery and walking around in very little distances is all I could do. When it says that it is 6-8 weeks, they mean it.

Flanneuse, how long are you scheduled for stay in the hospital? It is really best to have someone at least in the first week out of hospital there to help you. You will not want to get up to go anywhere. The incision on the hip is long and very uncomfortable plus you will have drains. I am really glad I did it but I have had to learn a whole new set of limits. Please let me know if you have anymore questions.

LAstar · June 2016

I had SGAP in NOLA in June 2012. The hip area didn't hurt much, but it was pretty numb for months. I had a seroma after my drains were removed after 8 weeks. You definitely want to keep light pressure on those "shark bites" to restrict the accumulation of fluid, even when the drains are in. Some people added folded washcloths under their compression garments to keep those inverted areas compressed.

Fe, I didn't have hip exercises but short walks were really helpful in my healing process. I slowly made my way to Bourbon St from Homewood Suites on day 5 after Stage 1, and felt pretty proud. Then I slept for about 100 hours.

It will be hot and muggy in NOLA, so don't get too ambitious on walks! I accidentally took my meds too soon one day (one good reason to have a caregiver), then felt super-weird and hot and had to rest in an air-conditioned hotel lobby until I could make it back to my suite.

Flanneuse · June 2016

Hi ladies, thanks for your input. To answer your question, Fe, I'll be at the Center for the customary 3 nights (barring complications) and will be staying a week in NOLA post-op. My mom will be with me and we're just figuring out where to stay.

LAstar, I am curious to hear from someone like you who is a few years out from this surgery. Do you feel that your hip area is back to normal now or should one expect some permanent numbness there? Your advice to take it slow and use extra compression has been duly noted

Fe_Princess · June 2016

LAstar, can you tell me what you mean by stage 2? I had a lot of fluid retention in my butt and had to go back every week after my drains came out to get aspirated. I developed a staph infection in my hip incision and had to have surgery again it was so bad. I had two drains in the one for another 3 weeks. I got the infection after a month. I have had a rough two months so my recovery is not usual. My doctor was perplexed too. He said it is usually the breast that gets infected.

LAstar · June 2016

Flanneuse, there is still some numbness in my hips. It's not that noticeable any more, and I have no restriction in movement. The scar is almost invisible now.

Fe, I'm sorry you had so many complications after your surgery. That is exhausting. Hips produce much more fluid, and this was a very frustrating part of recovery.

At NOLA they do the surgery in 2 stages. Stage 1 is just for moving the flap and making sure it survives. Stage 2 is where the fine-tuning is done. The donor area is repaired. My surgeons did thigh liposuction so that I would have some fat available for grafting in the breasts to soften the edges of the flap. The "shark bite" area in the hips where the flaps are taken is repaired with a butt lift. The breasts are reshaped and resized at Stage 2. Sometimes it's not necessary. Unfortunately, one of my SGAP breasts was affected by necrosis and shrunk over the course of 2 years, so I had to have a DIEP to repair it. My Stage 1 DIEP breast looks so good and matches my SGAP breast so well that I've never gone back for Stage 2.

Flanneuse · June 2016

Thanks for sharing your experiences, LAstar. So sorry to hear that you had to have a secondary surgery but glad to hear that you were pleased with the results! I am trying to mentally prepare for the next steps and it's so helpful to read the honest testimonies of women like you.

Fe_Princess · June 2016

LAstar, I am glad to hear that the scar mellows out. I should know from experience with mastectomy and reconstructions. Did the indent ever fill out at all in the hip? It has been a hard transition too because I do a lot of running/hiking and I have had to completely change my attitude around it. My surgeon is one of the best in Switzerland. He teaches in London as well. My oncologist says he was born to do this micro surgery. My breast is really amazing. It looks better all the time. My implant was horrible!

Flanneuse, this surgery has been all about recovery for me. I kept waiting to "get back to my old self" but it only made me terribly depressed. I had to let go of a lot of expectations about myself. It is part of the naivety in thinking that I would not let cancer change me. I can see that nothing really could have prepared me for the life alterations that breast cancer brings, that is why I love these forums so much. I get to hear real experiences from everyone which is what I need. What did you do with your original dx in 2009? Is your new dx a subsequent one?

Flanneuse · June 2016

Fe, I appreciate you sharing your feelings around your recovery. I guess I am prescribing to the notion of "forewarned is forearmed," and hope that by reading these forums I will somehow steel myself for the long road ahead. But it's all theoretical, of course, and impossible to fully fathom in advance. My first dx was DCIS. I forwent rads after lumpectomy in favor of "watchful waiting" with regular screening. My surgeon at the time felt that the location was close enough to the heart for rads to do potential damage. I know of one woman with radiation related heart failure (in her 40s) so it was enough to convince me to skip them. This last dx was IDC, a new primary in the same breast. Because of this and because they also found hyperplasia in the right, I've decided to get rid of them once and for all before they cause me any more trouble.

LAstar · June 2016

Fe, my hips were filled out at Stage 2, but I am definitely shaped differently. I always had an hourglass shape to my hips and now the line is straighter, so my clothes fit differently. I've been taking belly dance classes for the first time in over a decade and it's been interesting to see how differently I have to move now that part of my hips are gone. I'm glad to hear that you are happy with your results! Hopefully you'll be back out hiking and running this summer. Now that you are 9 weeks out, you will probably be feeling stronger every week.

It's all like a crazy dream at this point! I forget about it for a little while sometimes and then marvel at all I've come through. I didn't realize at the time that I would just be the first in my group of friends, so now I'm helping others as they are diagnosed and making treatment decisions. My experience is limited to DCIS, MX, and flap reconstruction, but we can all identify with the feelings of being overwhelmed and mortal.

Flanneuse, it's definitely good to be prepared for the long recovery. I knew two local women who had their reconstruction done in NOLA at the same time as me. They were 10+ years older than me but recovered within 4 weeks whereas I took a full 6 to get off prescription meds and feel like I could function, drive, work. We finally realized that they had had their MX previously where I'd had mine at the same time, so I needed the extra time to recover. I read a lot of cheesy fun books that I'd never make time for otherwise, binge-watched TV shows like Game of Thrones, took lots of naps, called old friends, went on short walks, and snuggled gently with my daughter. It helps to let go of the stress of not being able to do anything or else the recovery time is really frustrating. There is great relief with having the surgery behind you. Sometimes the stress of waiting and fearing the unknown is worse than dealing with the post-surgical recovery.

Flanneuse · June 2016

Wise words regarding recovery, LAstar. To just let yourself do that and not attempt much else.I will try to heed them!

Nolagirl1126 · June 2016

Flanneuse- glad you enjoyed your weekend! There are so many places to stay...but probably only a few with a kitchenette...so one of the Inns and Suites would probably be great for you. My surgery is scheduled for 8/18. My sister is back to normal after 6 weeks post op from her DIEP. I am hoping for the same...but I'm the older Sis...and I'm a hip flap surgery.

Flanneuse · June 2016

Hi Nolagirl, so glad for your sister's speedy recovery and hope you'll be the same. I am doing a bit more research on the boards and becoming a bit quakey at the idea of such a big surgery in only three weeks, but am sure it will all go fine. It does sound like the GAP gals have a longer recovery time than the DIEP in most cases and I guess it's just something we need to be ready for (as much as one can be!). Wishing you the best of luck for 8/18!

eloqui · June 2016

Wishing you the best OP! I had stage 1 in NOLA 2 years ago, bilateral sGAP. My job has beencrazy and so I am still waiting on stage 2. I love the results up top, the bottom is still a work in progress.

Let me know if you have any questions at all!

Other ladies, how long did the stage 2 recovery take? Did you notice much of a difference after? I had a nice round butt pre surgery, which I miss!

LAstar · June 2016

I needed a good 2 weeks to get back to work after Stage 2. It was a breeze after the 6-week Stage 1 recovery, and there wasn't much pain for me. Your bottom will be much cuter after Stage 2! It gets a lift!

eloqui · June 2016

Glad to hear it LAstar!

Nolagirl1126 · September 2016

Hi GAP-ers!

Had stage 1 surgery on 8/18. Ok, harder than I thought. I am 3 weeks out, and still not back to 80% normal. I think I would actually have a little more energy today, but have a nasty cold...and now that's keeping me down. When they did the CT scan of my hips prior to surgery, the scan showed lung nodules and a cyst on my ovary. So had to get those issues checked last week. I was completely scared and stressed, but all checked out as OK...Thank God 🙏 My breast are still VERY swollen and my flap side was touch and go for a while. I probably do have some PTSD from all of this. I am going to try going back to work in Monday and working a couple hours in the office...we'll see how that goes. Just wanted to touch base with you all!

My recommendation: don't push yourself, and REST! 💕

Any GAP-pers from NOLA here?

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