DIEP flap difficulties and regrets - can it get better?

Lefty_Lucy

Hello,

Had DIEP flap reconstruction (L total mastectomy in January, R nipple/skin sparing happened with DIEP flap) eight weeks ago and it has been so much more difficult than I anticipated. I've had foot/leg reconstruction and smaller abdominal surgeries as well as the mastectomy/lymph node surgery in January, so I thought I had an idea of what to expect, but I've had more pain, slower recovery, and more difficulty emotionally than I anticipated.

I am now physically getting back to where I can do more, which is great. I still have more nerve pain than I thought I'd have at this point, and was surprised by things like how the area of numbness wraps all the way around to my back. I found it upsetting that my belly button was moved (I guess I should've anticipated this?) and it's about six inches higher than it was before. With so little feeling on my entire torso + nerve pain + stuff being moved and shaped differently, I just don't feel like it's my own body I'm looking at in the mirror. It's very odd. I adjusted to having one breast much easier than this surgery, which was supposed to make things feel more "normal" again.

I've been having such a hard time I'm considering whether or not I want to do the next surgery--liposuction and revision. Another 2-3 weeks of recovery and again adjusting to a post-surgery body sounds exhausting. More pain and numbness and difficulty.

So... did anyone with DIEP flap have a hard time after the initial surgery, and then find improvement after subsequent ones? I'd love to hear good or bad experiences.

Thank you!

Mavericksmom

I had DIEP reconstruction after left mastectomy in Jan 2019. I didn't have the same issues you are having so I can't help you with that, but I did have issues that I rarely hear mentioned, like huge amounts of swelling in the hip area, feeling like I have no real waist. I am heavy and now have what some call their "muffin top." Because I was previously radiated, which caused severe burns in 2003, I had large wounds on my breast skin that didn't stop bleeding until July of 2019. Time did make the wounds heal and the swelling go down. I am getting more used to my new body shape. I do now think, given my diagnosis, that however imperfect, it is the best outcome I could have. My plastic surgeon really did a great job surgically, I just wish he had given me more information on what to expect. On his behalf, I was in shock due to second cancer diagnoses after 151/2 years, so he may have given me more information and I just didn't process it. I did not have nipple sparing so no nipple on the left side. I did not have any further surgery due to having very bad veins.

I hope somebody else here can relate to what you are going through. Weekends are typically slower on here, so hopefully just bumping up your post will help get some answers for you.

Accarpenter

I had a prophylactic bmx with drip last December. I go back the week of thanksgiving for the revision. The recovery was t so bad for me as I am very numb. I am just upset about not having a waist and uneven breasts. The clinic/ hospital is horrible to work with sending my anxiety into overdrive thinking about stage 2. Have you had the revision yet? If so- how was it

Lefty_Lucy

Hi, Accarpenter. I had my revision September 23. It wasn't a magic fix for my issues, but I am glad I did it. Recovery was so so much easier compared to phase 1, and I am happier with how my body is now. I'm still not going to be in one of their promotional pamphlets any time soon, lol, but it helped. As for the parts I don't like, I'm trying to adjust.

I feel you on the anxiety. I've had a tough time with it, too. No easy fix there, either, but I feel like parts of it are getting better as I'm able to put some milestones behind me. I can tell you now it's definitely possible to have a rough go with phase 1 and a better phase 2. I'm not sure I'd do it all again if I would've known what it would be like, but things are getting better.

Best of luck to you!

Accarpenter

what were your difficulties with phase 1? How did phase 2 change that? I arrived for the BMx and diep to learn Vanderbilt forgot to schedule the mastectomy - only the diep. After hours of waiting- surgery was finally a go. More surgeons were added due to time constraints. What I discussed with my physician, was not what happened. So now I have significant scarring, uneven placement of my nipples , and very uneven breasts that are way too small.

I am now 1 week post phase 2 surgery recovery. My stomach looks much better, lipo results on my back are very uneven and my breasts are even smaller, nipple displacement more noticeable, and still very oblivious difference in size. I go Friday for my post op. I am sure he will make more promises that he will not honor. I an sooo upset over this.

JanetM

My DIEP flap was a failure. I had a BMX and the flap on the right failed during surgery. The veins just shredded most likely due to previous laproscopic procedures. The PS tried very hard to save it but at the end of the day couldn't. He called my daughter and conference in my daughter in law and together they discussed the options one flap and one expander or abandon the left flap and put in 2 expanders. For the sake of symmetry they went with 2 expanders. Due to very thin skin on the right side, no expansion was done during surgery and will have to wait until I heal and until some fat grafting is done on the right side. Instead of the hopefully one and done procedure I was hoping for, this will now be a very long drawn out process that I will hopefully be happy with at the end.