DIEP dissatisfaction

JWoo,

I'm so sorry to read about your experience. While this may not comfort you, you're not alone.

My mom had DIEP flap done on March 28th. 7 days after she developed tissue necrosis in the stomach incision and in her right breast.

She was on a wound vac for 2 months and had 18 surgeries in 9 weeks. In the hospital 37 days.

Those 18 surgeries resulted in blood clots in her lungs.

Don't even get me started about the outcome of her surgery cosmetically. My mom says her "breasts" look like Mr Potato Head and I have to agree. They don't even resemble breasts. She has a terrible tummy-tuck scar and her stomach is pulled so tight that she can hardly eat. She gets full after only a few bites. She can't take a satisfying deep breath because her stomach is so tight.

Her breasts are incredibly painful - all the time. The pain never goes away. What did her PS say about it? He said that it's good because that means she is regaining sensation? WTF?! Chronic pain is not good.

We recently went 3 weeks with her right breast hot, red, and swollen. They said it was no big deal. She has been in so much pain from it the last few days that I demanded an antibiotic and what do you know? The redness and swelling and pain is slowly going away.

We are exhausted, devastated, & depressed. Like you said: You're out of energy, out of time off, out of money, and not out of tears. We are in the same boat.

She cries morning, day and night and it kills me that I can't do a thing to help her. That these doctors aren't taking her seriously. That they're not giving her something to control her chronic pain. That they didn't take her red, hot, swollen breast seriously. That her PS has the nerve to say he is happy with the results!

What if we took his penis off and sewed his balls to his chest? Would he be happy? Sorry.... I didn't mean to be crude.

After having said all that, I am so sorry you are going through this. If anyone gets it, we do. I wish you nothing but the best. If you need to talk, I'm here.

I also noticed you live in Round Rock. I live in Richardson, not too far. Who was your surgeon?

Best wishes.

Chelsea

Dear JWoo,

I can completely relate, and I am sorry for you. I am in the same boat. Had DIEP flap in Nov. 2016, and a revision surgery 3 weeks ago. Deeply dissatisfied and upset. My breasts are still different (the radiated side is round, and the other side is flat even after the revision).

But the bigger problem is my abdomen! I agree - it looks like a bloated fish. Bloated, or swollen, or filled with liquid from lymphedema... No one is giving a proper evaluation. I am going to physical therapy, but they don't guarantee anything. In the morning I can zip my pants, in the evening I need 2 sizes bigger. The surgeon's guess (!) is that the lymphatic flow is disturbed by the huge incision and scar across the whole belly. It gets so tight in the evening, that it is hard to breathe.

I regret my decision to have this brutal surgery, but I didn't have much choice because of the radiation damage.

I read a lot of similar messages, and I found a couple that were encouraging. Some women said the abdominal fullness and tightness improved in 2 to 3 years! So let's wait. Sigh.

I am sorry I couldn't give you a better news, but at least you are not alone.

Chelsea, maybe you should get her to another doctor. I have seen numerous stories from people on here who have done just that and a different doctor was able to fix or at least improve their problems. If you are concerned about the money,, you should know about the 1998 Womens Health and Cancer Rights Act. Under that law, any insurance company that covers mastectomies must also cover the costs of reconstruction, including second opinions, all stages of reconstruction of the breast on which the mastectomy was performed, surgery and reconstruction of the other breast to produce a symmetrical appearance, prostheses and treatment of physical complications of the mastectomy. This law is administered by the Department of Health and Human Services, so you should complain to them if the insurance company gives you any flack about paying for her care, since this is a clearly a complication of her mastectomy and reconstruction. I hope this helps. Good luck.