Failed DIEP Flap

shadow2356

I had a bilateral mastectomy with immediate DIEP reconstruction on 10/9. It was a 15 hour surgery. The flap took. It was being monitored with special oxygen sensors. After 24 hours the sensors come off and they monitor the capillary refill. About 9 pm Sunday night I started having excrutiating pain in the left breast. The nurses and resident checked it and they said it was fine. It hurt so much I actually called the plastic surgeon from my room using my cell phone. He never called me back but instead called the resident who said it was fine. The nurse refused to wake the resident again because I kept calling. In the morning two surgeons doing rounds came to see me. They saw it and freaked. They called my doctor and rushed me back to the OR. It turns out there was a venous clot and they couldn't save the breast. The blood was going into the breast but it had no way to get out.It was a five hour surgery. So, after 20 hours of surgery I only have one breast. Ironically the reconstructed one is the one that had the cancer. The lost one was the breast that was fine.

The surgeon said he could have fixed it if he had known in time. I have more surgery in my future. Did anyone else have this happen? If so, what did you do next??

Anonymous

Shadow, I'm so sorry this happened to you.  I had a Free Tram Flap done in March 09, at the time of my mastectomy.  My PS was awesome.  I've heard that there are some failure risks with the DIEP due to the issue of blood vessels. You must have been so annoyed nobody would take you more seriously when this happened.

PATTY50

I'm sorry this happened to you too.  I also had a blot clot but my ps came in and reoperated.  Did they use a doppler to listen for blood flow?  This is how they monitored mine and realized something was definitely wrong.  Someone else lost a flap last week.  Her post is in NOLA in September.  I believe she had another surgery while still in hospital. I believe it was a gap.

smirks44

Shadow, I am so sorry to hear this!  I had a bilateral last September with TUG reconstruction (no cancer - prophylactic due to being BRCA+), and I too had a failure on one side.  

My mastectomy and reconstruction was on Thursday.  On Saturday I was taken back to OR to try to bust some clots that had developed.  On Sunday the vein was still clotting so we returned to surgery again and they attached a second vein to try to improve the blood flow.  By Sunday night the flap was cold - FAILURE!  :-(  

On Monday I had yet another surgery and the failed flap was removed and an expander was put in.  In total I had 22 hours of surgery that weekend.  (Truly a crummy weekend!!!)

I went through the expansion process and seven months later had surgery to put the permanent implant in.  I now have an implant on one side and a flap on the other.  It is not ideal.  I definately prefer the natural look and feel of the flap, but I am not ready to wrap my head around another flap surgery (going back to try DIEP for the failed side is an option I could choose.....).  

I was also told that they could have saved my flap if the problem had been reported sooner.  I try not to think about that too much! 

My heart is with you....reading your story brings me to tears!!   I am so so sorry that this happened to you!  I know how hard it is........

If you would like to chat some more, please send me a message.  I would happy to share anything I can about my experience that may be helpful to you!! 

SandyinSoCal

MaryEllen, I am so sorry that you've endured so much and lost a flap.   I nearly lost one, and while we watched and waited, I decided I would go back for a GAP flap if necessary.  Is that an option for you? Smirks, so sorry for your experience as well.  I hope you both heal well and feel better soon. 

abbadoodles

MaryEllen, I read your story yesterday but was just speachless so am only answering it now.  I am crying inside for you.

This story points out the need for us  to ask the tough questions before going into these major surgeries.  First of all, we need to know the questions to ask and then we have to have a check-list of requirements.  I don't know how to accomplish this for the women coming down the pike in the future who have no idea of the pitfalls they need to be avoiding.  Maybe a dedicated thread?  Even that disappears in good time if no one posts.

Women need to know at the very least that their surgeons are totally available to deal with emergencies.  I cannot believe the ps was not availabe in this case.  My own ps's  were in several times a day and came in on the weekend days, too.  They were available 24/7 by phone/beeper.

As an aside, my hospital now has all flap surgeries go post-op from recovery right to a step-down unit (built mainly for cardiovascular cases) for the duration of hospital stay, no regular floor.  The reason is that the personnel on the unit are trained to monitor all vascular conditions and on an intensive level/frequency.  My flap was monitored  every hour for 2 days, more or less, and then every two hours until discharge.  Monitoring included doppler, of course, but also inspection for color, temperature and turgidity.  They want to be on top of any developing situation and be able to take a patient right back to surgery if necessary.

happy29

I am so sorry you have gone through this.

And I am sorry for you Smirkes

abbadoodles is so right. If a flap fails it MOST likely happens within the fiirst 72 hours. Therefore it needs to be very closely monitored by nurses and Physicains that are very familiar with what to look for, feel for, and Hear for. 

 I imagine your PS must feel horrible- as he should. This is not for a resident to observe.... I suggest to allow yourself time to heal before you make any major decisions. I also suggest to seek out other reconstruction microvascular surgeons to hear their opinion.

I wish you the best healing.

kmccraw423

MaryEllen - I am so so sorry this happened to you - I find the whole matter outrageous.  Because of other health reasons, although I was hopped on getting it, my doctors said no.  As it turned out even the implants were a problem and had to be removed.  I so know how you are feeling and I am so sorry you had to go through this when it could have been fixed.  Hugs.

Tina - sounds like your hospital in on top of it.

All in all, I don't think you should have to ask your doctor if he/she will be available to handle complications should they arise but apparently you do.

How could a surgeon tell you he could have saved the breast had he known in time when you called him and he never called you back?

smirks44

The "would have", "could have", "should have" of all of this is really tough!  I have decided not to spend too much time thinking about what might have been!  My flap was monitored in step-down as mentioned above, but when the problems arose it took time before my PS came in to see what was going on, and it was too late!  Thinking about that doesnt help me now!  

I know that the hospital I was at has changed procedures for reporting concerns.  It is comforting for me to know that the chance of this happening to someone else is reduced because of this.

So, I have made a conscious  effort to focus on healing and getting back to my life.  The negative emotions of "how could they...." or "why did they....." just drag me down!!  

There is definately a grief process associated with this loss, and anger is part of that, but living in that anger was not good for me!!  I needed to let it go in order to move on.....

How are you coping Mary Ellen?  Do you have thoughts on what you would like to do next, or is it too early for that? 

LISAMG

This is all so excruiatingly heart breaking to learn and a real eye opener for those contemplating flap surgeries, especially given the lengthy surgical time as well. How devastating and negligent is an understatement. This serves as a brutal reminder to all in seeking perforator flap surgeries and how highly specialized the micro vascular plastic surgery field needs to be for successful outcomes. The surgeon did his immediate job here, but the post op care failed big time whereby the staff nurses and residents were sub standard and should be held accountable. PS's and close surveillance needs to be immediately mandated/available 24/7. Your plea for help was grossly ignored. I am so deeply sorry for you, Maryellen and hope others with experience can offer assistance to you. Please consider another microvascular plastic surgeon's advice who may help you.

TammyLou

What I'm going to say is not "fair," but it is how I feel, so I'm going to say it.

I think that there is a tendency to (imply) blame the patient when things go wrong.

"Well, if we had known sooner..."

 [My bs meter is screaming its collective head off]

Our legal beagle mentality seems to be preventing our care providers from saying, "I am really sorry."  (I screwed up.)

That's not going to bring your boobie back...but I think it might help how you feel a little bit.

I suppose that the monitor said you were fine.  (Flap "looked" okay)  It is rudimentary law that is "taught" at all echelons of care = watch the patient, not the monitor. 

(Patient says there's something wrong...guess what?  Usually, there's something wrong.)

In the flap loss division...been there, done that.

(I'm h#ll when I'm well...) So, when my microsurgeon's assistant said, "well, you know, he didn't really want to do that surgery..." I confronted her immediately...and I did not stutter.

 As far as microsurgery goes, we are talking about a very complex procedure (sewing teeny tiny vessels together under a microscope).

Microsurgeries of all types (not just breast recon) fail.  The most common cause is what you've described (venous congestion).  Sometimes, it is "predictable" and sometimes it isn't.  My caregiver said that 2/3 way through my surgery, the tone of the progress reports changed dramatically...it turns out I have really really teeny blood vessels in my king sized bottom...who knew?

[Just so you know, my microsurgeons objection was based on the fact that I would have to undergo 2 major surgeries to reconstruct my boobies with butt fat.  He has had a number of patients renig after experiencing their first flap recovery...not because he perceived an undue risk of failure.]

The fact is, flap failure sucks the big one, and I am so sorry.

tl

smirks44

As I mentioned above, dealing with the anger of "how could they...." or "why did they..." is part of the process of recovering from a failed reconstruction - especially when you know that different actions by the health care team may have resulted in a different outcome!

I just wanted to add that for me, anger at myself was part of the process too!!  

When I posted on various forums about my experience, there were many comments about the importance of choosing only the most experienced surgeons, and about researching your options thoroughly.  This is all very very true.  However, for me in that moment, these comments felt like I was being told that I had NOT chosen carefully enough, or had NOT researched enough, and that if I had done so I would have been better off.......in other words, these comments made me feel like people were saying that I was partly to blame for what had happened!  I am sure that people didnt mean it that way, but that is how it felt!

I made peace with all of that when I took the time to review my decision-making process, and realized that if I were back in decision-making mode again, I would probably make the same choices!  Looking back I could not think of questions I should have asked, or extra research I should have done!  (The only advice I now put out there to others who are researching flap surgery, is to ask your surgeon ahead of time about the process for getting in touch with him/her if you have concerns about possible complications.....I do wish I had done that!!!)

Maryellen, I am guessing that you put lots of thought into this before choosing your type of reconstruction and your surgeon!  You did your research, and made the best decisions you could at the time.

Again, I am so sorry that this happened to you!  On another forum someone said that flap failures "sucketh big time".  That sums it up for me!!!  It is not your fault.  It doesnt mean you made poor choices.  

Microvascular surgery is indeed highly specialized, and there are inherent risks.  1-2% of flaps fail....regardless of how well you have researched and regardless of how experienced your surgeon is, the risk remains.....even when decisions are carefully researched, and medical teams do their very very best! Unfortunately, sh_ _ happens!!!  :-( 

TammyLou

Exactly.

I was in a killing mood when (seemed like ALL) of the NOLA graduates told me that what I really should have done...

I was reconstructed by one of the top microsurgeons in the country...and I paid not one thin dime for it.

I got not a single soul in New Orleans to take care of me.

I chose wisely...I really did.

Sometimes, what you have is bad luck.

tl 

smirks44

Hey Tammy Lou!  I was writing my post at the same time as you were posting yours....and I think I am quoting you from the FORCE site :-)  

I love the post you just wrote, and couldnt agree more!!!

TammyLou

Probably. 

Hello.

Yup, yup and yup. 

Stonebrook108

Maryellen,

I'm so sorry this happened to you. It's seems that the PS is passing the buck on to the resident by saying "If I had known about this I could have fixed it" Well then why didn't HE come to hosp. He knew it was  2 days after your surgery and that there could be a problem within 72 hrs. He did know something was wrong and HE should have come to the hosp. himself. Was the resident a PS?

No matter what they all should have listened to you.

sweatyspice

I'm sooo sorry.

I'm on the other side of this adventure, the beginning side, and frightened.

Last night I attended a presentation by Dr. Joshua Levine on flap reconstruction which was hosted by Gilda's Club NYC.   One of the women there was a patient of his.

She'd previously had implants, I can't remember if she'd only hated them or if they'd failed.  She then went to Dr. Levine and had a bilateral TUG.  One of the sites failed.  She went back and had Dr. Levine do a second try with DIEP, which succeeded.  She's very happy now, happy enough to be going around to his events and showing her breasts to women like me and singing Levine's praises - even though she went through hell.

So there is definitely a future out there for you, complete with a reconstructed breast, if/when you're ready to try again. 

For me - how I decide/what I decide/who I decide....totally overwhelmed, but I'm glad I know one more thing to ask about.  Your story is terrifying - and I'm so sad for, and enraged with, you.

She

Mary Ellen & Smirks, I'm so sorry for what has happened to you.  I hope you're able to get further surgery with successful results.

This is JMHO but from what I've been reading, the surgery itself wasn't the problem, it was the after-care.  Perhaps the most proactive thing we can collectively do is to educate those deciding to have the flap surgeries to provide them with plenty of details on all aspects.

When I woke up from surgery I was in a 'hot room'.  The temperature was kept over 20C for 48 hours.  My flaps were monitored with Doppler every hour for the first 48.  For the second 48 they were monitored every two hours; then every four hours for another 24 hours.  I also had heparin shots daily while in the hospital and an asprin a day for the next 4 weeks at home.

I chose this procedure because it was my best shot at reconstruction.  This was my 3rd  different BC, I'd already had rads to both sides.  Going in I knew my chances for success were significantly lower than most others'.  So far I've been very, very lucky and I pray it continues.

All the best, She

Edited to add (thanks for prodding my memory Swimangel) - I also had antibiotics both in the hosp and at home (10 days); and two plastic surgeons for the DIEP, partners in their private practise and both well experienced with the procedure. 

Yesterday I went in to have a seroma drained, it turned out to be belly fat necrosis.  20 minute office procedure, all cleaned up and sutured, with a new drain installed.  The drain is supposed to come out on Tuesday.  This afternoon the bulb filled up with air.  I thought it had a leak but no, the drain has come out of the incision about 1/2" so no suction possible now.  I talked to PS office, they said no problem, it will still drain without suction and the majority of 'gunk' would have already come out.  They did tell me yesterday not to expect more than 1-2ml after today.   I must admit it does already feel a lot better than before it was cleaned out, even with the drain, so we'll see how it goes this weekend.  I have antibiotics on hand 'just in case' I need them, and the area she cleaned out was right on the incision and not all that large, maybe 2".  I'm going to be so happy when these little 'bumps' are over with and I'm healed up.  Then I'm done until it's time to 'nipple up', I was discharged by my Onc - no further tx required .... yahoo! 

swimangel72

Mary Ellen & Smirks I'm also sorry for what you've both suffered - and I agree, the after-care is as important, perhaps MORE important, than the skill level of the surgeon.

Reading this thread, I'm amazed at the differences in hospital care for Diep reconstruction. My flap was only monitored with a doppler for 24 hours - no hot room, no heparin shots and no aspirin. After 24 hours, I was moved to a regular surgical floor where people kept coming in and out of my room to look at my breast. This should have been a red flag to me that the hospital was inexperienced in patients like me. I ended up getting mrsa.........and needed more major surgery a year later to repair my stomach. My new PS and new hospital follow a totally different protocol for patient care - from the outset, they send the patients home prior to surgery with surgical sponges with which to shower. Also, they give the patients prophylactic antibiotics an hour before surgery starts. How I wish that there would be a universal protocol that ALL hospitals and surgeons would be forced to follow for breast reconstruction............in addition, the length of a surgery puts a huge strain on a patient. I believe with a bi-lat mx and free-tram flap reconstruction, especially Diep, there should be TWO plastic surgeons present, in addition to the breast surgeon who performs the mx. Of course, with the financial mess the country is in, hospitals try to save money wherever than can, including a reduction in skilled nursing staff as well as a reduction in their cleaning staff. Inevitably it has a negative affect patient care. But for a PS to send a RESIDENT to a patient who has just undergone a flap reconstruction - I'd be enraged and tempted to call my lawyer!

kmccraw423

Now I really don't know what to do.  My reconstruction attempt with implants failed miserably.  My diabetes is a big stumbling block to any wound.   I want foobs but I just don't know.   I know that DIEP is definitely out - diabetes, past heart problems, ad nauseum.  Any kind of flap surgery involves 3 surgical sites that must heal (I had a bilateral mastectomy).  I am putting off any decision for a while.

To all of you who had less than adequate care or just plain bad luck - I hear you.  Hugs.

kaye45

Mary Ellen & Smirks, I am so sorry to hear about your bad experiences and I echo all the thoughts of others that it was damned unfair. I agree also that to dwell on the what ifs is painful and doesn't help the situation. Someone above wrote about having a second go at reconstruction after a failed flap, and there are a number of successful accounts of this in these forums. I had only one breast for 15 months before I went for my DIEP and I remember thinking if the flap fails I could live with the breast prosthesis again for a while longer. (and I remember thinking if they scew this up, I am definately going to insist on some free cosmetic work thrown in for the next go round ) One of my nurses told me after my first BC surgery, take the time you need to heal - something obvious but also important to keep in mind all the time. I geuss what I'm trying to say is that my prayer for you both is that you can move forward and find the best reconstruction option for you when you are ready.

sarabhealed

Smirks, TammyLou et.al,

So sorry about your experience--I know first hand that it sucks big time as I lost a flap in August. Sorry about all of the NOLA grads that wax eloquent about their experience in a way that at times can make others feel bad. I'm glad that so many had a great experience there and it is in fact a phenomenal place.  But I think in part the "preaching" is to make them feel like it couldn't happen to them. Well I was at NOLA  and you are right people need to know that this is a possibility. I thought that because I was at Mecca(NOLA) and healthy as a horse I would not be one of the 1-2% but here I am--I'm glad you are moving on from blaming yourself and others--I know I've been working on this and want to focus on healing. Hang in there...

abbadoodles

swimangel, yes, my hospital has ALWAYS had me shower the night before AND morning of surgery with Hibiclens.  I have had the BearHugger, the HOT room, antibiotics before, during and after surgery, heparin in and out of the hospital, aspirin for a month and a half, etc.  Had two surgeons for all flap surgeries. Now, here I was thinking those were all routine.  Makes me all the more appreciative of my care over the past adventures.

My microsurgeon actually offered to go out for restaurant food for me  when I said I couldn't eat the crap they were feeding me in the hospital.  Of course, I wouldn't let him do it.  (DH coming in with take-out LOL.)

All this, BTW, in little Worcester,MA at UMass Memorial Med Ctr. 

AnneW

And that is the truth about flap surgery...even the best physicians in the best hospitals experience them. It's a horrible loss to the patient, and a horrible loss, on a different level, to the compassionate surgeon.

I keep thinking, "thank god it didn't happen to me." But I knew it could have, but I pushed that out of my mind so I would go ahead with the surgery. If it happened, I would deal with it, with my loving, competent surgeon (and I wasn't at NOLA.) But, all went well. I had decent arteries and heparin and stayed off my BP meds to keep my pressure up. And I got 2 healthy flaps. I am thankful.

You gals who have had flaps fail and are still moving forward have my utmost admiration. I am ashamed that any of you felt in any way responsible for your flaps failing. But I can see where that happens. Please find peace in your journey.

Anne

shadow2356

Thankyou all for your replies. I am home recovering. I have six drains. I have a lot of pain and only one breast. I am having surgery again on 10/27. I am not sure what type yet. I see the plastic surgeon again on Thurs. I am elated to find out my cancer is only stage one. The reconstruction is outcome is upsetting, but mostly I really need to beat this cancer. Good luck to everyone having surgery soon. Be proactive. Know how it should look if it is healthy and scream and yell for help if it is not. Better safe than sorry.

hrf

shadow, smirks and to all who have had difficult journeys with recon....my heart goes out to you. I hope that in the near future, all of you will be able to get this fixed and that you find yourself satisfied with the result. I also want you to know that, as a result of what you are writing on this thread, you have armed me with information that I can take to my PS as I move forward towards a DIEP procedure. I am more optimistic knowing that I have better information and know what to ask for and what to ask. You have done me and others a great service.....more than you realize.

Suze

Shadow, I am so sorry to hear all that you are going through. My implants got infected 10 days after the exchange surgery, and it took me 5 months after that to really come right again - months of antibiotics and healing and pain and grief. It is not small thing.

I think it is so much the worse when you get the sense that something could have been done, and it wasn't. You really were let down. And that adds to the emotional load considerably. It is great news that the cancer was so early, but go easy on yourself. All of this is hard stuff. And to have to face more surgery so soon...I am not sure I could have done it.

Take good care. 

kmccraw423

Suze - you said it right.  When I started this nightmare called breast cancer, I thought bilateral mastectomy followed immediately by new perky breasts.  How naive!  You know, one, two, three and you're done.  Yea, right!  I was in the hospital so much I was thinking of changing my home address to the hospital's address.

MaryEllen - Be gentle with yourself and be armed with all the facts including what you expect from the PS, hospital and anyone else who comes near you.  I, too, found out the hard way what not to do!  I hate learning that way.  BTW - Julianna is adorable!!!!!!!!!!!!

dash

Maryelle, smirks, Tammylou, swimangel and others who have had complications, I'm so sorry. Totally inadequate, I know but my heart goes out to you.

I have a question regarding tamoxifen. Has anyone's doctors asked them to stop taking tamoxifen pre-surgery? I have read tamoxifen increases the risk of blood clots so it makes me wonder...

Leah_S

I've read on a few sites about diep flap that women stop tamox for 3 weeks b4 & 3 weeks after flap surgeries. Haven't done it yet so don't know for sure.

Leah

PATTY50

I was told to stop taking tamoxifen for 2 weeks before and 2 weeks after surgery.