Not-so-good surprises in DIEP surgery and recovery?
Comments
-
I had a CT scan prior to surgery so he could locate and then mark the veins he was going to use for the DIEP. I had a unilateral and was very surprised at how sore the opposite shoulder became. I walked upright from the beginning. But the worst was the blister created by the compression suit on my bottom.....the top of the opening rubbed me raw.
0 -
The worst surprise has been hair loss. When I woke up I had a knot on the upper portion of the back of my head. It was very tender. I had surgery April 4th and this week have started losing hair. I now have a bald spot in the same area. I only hope it is temporary. The surgeon didn't know why as he was focusing on the micro stuff. I can only guess it was from lying in one spot for over 10 hours.
0 -
the worst is 8 weeks later and still having complications and issues - two large open cavities, two smaller openings, all on left flap; ab wound still not healed.
0 -
Thank you for this post, I feel better now. Yes, it's good to be informed, but I'm schedule for the DIEP the end of May and now I'm scared to death after reading these posts. Ladies, if you had a bad experience, please tell the rest of us where you had your surgery. It's the least we can do for each other.
0 -
Very helpful. I'll be on the lookout for that when I have my DIEP next month.
0 -
Rem, who did your surgery?
0 -
Brenda - don't be scared. Remember, the title of this thread is "not so good surprises" so that means a disproportionate amount of ladies who have had bad experiences are going to post here. If the thread were titled something like "If you love your DIEP post here" you'd have lots more people with good outcomes posting.
FWIW, I had my DIEP in 2008 at Hopkins and I still love it. I can wear low cut shirts, bathing suits, etc. and no one knows I've had a bilat mx. They're warm and natural feeling - they even "jiggle" like real boobs. I haven't even gotten around to getting my nip tattoos done (maybe this summer
) yet most of the time I rarely remember that they are not the "original equipment". Implants are right for some people, but for me DIEP was absolutely the right decision. 0 -
Brenda....
I had mine at the Mayo in Phoenix and I am very happy with that hospital and my surgeon.
I agree, because of the title of the post you are going to hear a few things in a negative light. I posted a few as well but to be honest, it's a HUGE surgery. I am happy I had it done and I am more than happy with the high level of skill from my surgeon and the hospital.
0 -
My PS has been doing this for many years and has a less than 1 % failure rate. My experience has been horrendous but it has nothing to do with his skills or the hospital. There is never a guarantee...too many variables.
0 -
Brenda: I'm a tough old broad and not afraid of 'nuttin. But lemme tell ya, going into a 10 hour surgery had me terrified. I had a shit load of surgerieis because of the BC plus mammosite plus chemo. And none of that scared me. My DIEP made me feel like I was jumping out of a plane at 10,000 feel without a parachute.
I had to really, really trust my own research and my team of Dr's. I knew I had picked one of the best Drs in the US and he had done ALOT of DIEP and was well experienced.
The minute I was awake after my DIEP, I was smiling & showing anyone/everyone my new foobs! I was happy to have my eyes open.
Most of my family members were NOT happy with the DIEP. My sister (also a bc survivor) said I should just have the bmx. I knew I had one shot and one shot only at having boobs of any kind and DIEP/TRAM was my only option.
When I was first dx'd with bc, I made a promise to myself that I would do anything & everything to win the battle. And that at the end of the road, I could look back over my shoulder and have NO REGRETS... no "I should have", no "I wished it did something different". I've stayed true to that course and amy better off than most.
Yes, DIEP double or uni is a BIG, BIG surgery. But DIEP gives you the best end results in that the foob will always feel like a real boob, move like a real boob and be warm like a real boob. My new foobs will loose weight if I do or gain weight if I do just like real boobs.
I knew going into my surgery that there was a risk of loosing the nipples, areolas and the flaps themselves. But the risk of loosing the flaps was almost non-existant because they just go back in and hook up more vein/aretry or fix the broken blood supplies. Everyone's body is way, way different and different things can happen.
To be honest, I'm not even disappointed that the nipples died. I know that they can be "fixed" just like a fender bender on my truck. Surgical technology advances every day. In 2-3 months, so who knows exactly "how" my nipples will be built. I may not even have them built and may just go for tat's and call it good. Who wants to walk around with the dreaded "headlight" effect 7x24?
If anyone is not terrified then they are fools. But if anyone is really, really having second thoughts on having DIEP, then they better hold up, do more research, gets second opinions, talk directly to those of us that have had DIEP, dig in deep on what other options are available. Second thoughts is that little voice deep inside trying to warn you, listen to it.
There is nothing written in stone that says when you have MX that you have to have immediate reconstruction. There are lots of women that have delayed reconstruction and are happy campers with their results.
For me, I was brave enough to put poison in my body to fight the bc, so I new I could do a 10 hour surgery. Not everyone is that brave, dumb or strong. There is no shame in anyone's decisons.
Good luck.
bonny
0 -
So...
I have to go tomorrow and have a "wire" cut that has somehow started poking up into my tummy sort of by my bellybutton. It is an in-office procedure and they said "it happens sometimes." It has been over a year since my surgery. I believe it to be part of the mesh?
I had not heard about this.
0 -
Bonny....I like to think I'm tough too, but man oh man I'm getting nervous, I am having delayed unilaeral DIEP on June 14th. I've ben trying to read back as far as I can on this thread seems like you ladies really tell it like it is and I want to hear it.
I posted on the DIEP 2011 thread too- very curious to know about the tummy after (the dreaded dog ears) and pretty much if everyone was happy with their results. I am not as scared about pain as I am about the end result, really really want to feel like me again
0 -
ANG7 ... explain the mesh???
0 -
bdavis~
They told me they used mesh to "keep my organs in?" The PS said part of the mesh could have come apart and so a "wire" is poking me. That or it is a staple but it feels too long to be a staple, if you ask me...
After surgery they told me that I had very thin skin and they had to use the mesh to help that.
Sorry if that is TMI...
0 -
I have heard they use mesh for a TRAM but I hadn't heard that for DIEP...
0 -
To ladym13....
I had really small dog ears, but with my first revision suregery, he lipo'd fat from those areas to fill in a little depression around my new foob. So, that flattened them out a bit. The further I am away from the original surgery, the better I thik everything looks. I really do feel like my old self and am very pleased with my results. I am working on tattooing now and thinking about a nipple. I wasn't sure at first, but I think I will get one. I look lopsided in the nipple dept when I wear a t-shirt without a bra....not that I do that often, but I would like to look in the mirror at home and see two NEs (nipple erections) staring back at me versus one. There is no way anyone can tell I have had anything done when I am in my swimsuit or any type of clothing (except the braless t-shirt, which is reserved for running around my house) ...I am very, very pleased with my results. Oh, my original surgery was March 2010.
0 -
And where did you go?? You may have said in an earlier post...
0 -
If you are asking me where I went, I went to Univeristy of Chicago Med Center. Dr David Song is my PS and he is fabulous.
0 -
I am glad to hear success stories!!!
0 -
Curious to know how things went with you. I am STILL looking for a surgeon to perform SIEA or DIEP reconstruction. None in my area but am willing to travel. Was to have mastectomy 20 May but don't want to go thru with surgery until I find the right PS.
0 -
Where did you have your surgery? I'm in southern Ohio but willing to travel.
0 -
BCGoAway- I live about a half hour south of Columbus, and my PS does the DIEP. His name is Wong Moon. He is with Metropolitan Plastic Surgeons at Grant Hospital in Columbus. If you have any questions you can PM me.
0 -
BC..I live up near Dayton/Centerville...all our ladies go to Cincy for DIEP.
0 -
Here's a quick question/thought:
I am in treatment with a woman with the exact same diagnosis and stats as I have. However, she didn't have a skin-sparing MX because she wasn't offered one. We're both starting Rads (me with a TE, her with no reconstruction) and have the same PS.
When I went to him originally he suggested DIEP right off the bat, that he'd refer me to Cincinnati. Said it's what he'd recommend for his wife, sister, etc.
Then when he examined me, said there was not enough fat and I was not a good candidate.
So yesterday I met with this other woman and he told her to "Gain 40 pounds" so she could have a DIEP. Is this true? Or is this something she made up?
When I told the PS (if the TE with Rads fail) I will gain weight for a DIEP because I don't wany any TRAM...he said..."Won't do you any good to gain weight because eventually you'll get back to your normal weight."
I assumed he meant this would affect the fat in the DIEP??
Could someone help me understand this?
Thanks.
0 -
I had a lot of issues with my DIEP.
I did a lot of research first and my PS had done over 1000 DIEPs. My surgery was BMX with immediate DIEP. It was 15 hours. That was an issue because I had a great deal of difficulty speaking after due to being intubated so long. I also had a lot of pain in my neck due to my head being in a tilted back position for so long.
Three days after my surgery I was having a lot of pain in my left (non-cancer) breast. I called the resident (it was nighttime) over and over. He said there was no problem despite the fact that over time it was extremely obvious that there was a big problem. It was painful, engorged and discolored. Initially it was just pain but the other things developed over the course of the night. He refused to call anyone else despite my pleading.
In the morning they came to do rounds and rushed me back to the OR. After a 5 hour surgery I lost the flap. For two weeks I had nothing but the skin. It looked like a rotting pumpkin. Two weeks later they put a tissue expander in. It was very painful due to the 20 hours of surgery beforehand on the same area.
I now have one implant and one DIEP side. The DIEP is soft and warm and the implant side is harder and uncomfortable.
It turns out the resident monitoring me was a dentist. He was doing a surgical rotation in order to become an oral surgeon. It never occurred to me to ask exactly who would be monitoring me. I have since done some checking and it turns out dentists do general surgical rotations in most states. You would never know this as a regular patient. You can look it up though.
I am considering a flap on the side that failed.. If I do that I will go to New Orleans where flaps are all they do. I am sure they know exactly how to monitor them.
If you are thinking about this surgery, ask TONS of questions about how much training the night staff will have in this particular surgery.
I have pictures of the whole thing (breast and all) on my blog for anyone who is interested.
0 -
I am considering the flap and am actually in NOLA now to meet with the doctors for a consult... I went over to the hospital yesterday to see the rooms and meet some fellow board contributors and it is indeed a very impressive place... Locked up like Fort Knox... You would never even know you are at a hospital from the outside. Inside, the rooms all have private baths, flat screen tv, a murphy bed for your companion etc etc.. and very peaceful and quiet... The desk just feet from the rooms had about 6 staff members.
I haven't decided 100% whether to procede or not (my meeting is tomorrow with both the PS and BS) but if I had to have MX, NOLA is definitley a great place to do it. The three women I met yesterday from the boards who all had their flaps done this week, are all in good spirirts and looked great... There were two other women I didn't see though... One had had a complication with a collapsed lung and the other was not up for visitors... So no matter where you go, there can be issues since this is surgery and comes with rsik.. I will say that the women who had their surgeries said that it was like a 4.5 hour surgery.. so not long at all.
0 -
BDavis
Wishing you luck on your surgery decision, I know that it has been an enormous undertaking for us but we are worth all the effort!
0 -
So....I have been seriously lurking here since I read about this thread in the DIEP 2011 thread. I read all the way from the beginning. Thank you ladies for all of the info. I am scheduled for uniDIEP on June 8. My PS is very experienced with a good reputation but he did say there is ALWAYS the possibility of a free tram because he will not proceed with a DIEP if he thinks the blood vessels are not good enough for the flap to survive. I have to agree with that, I don't want him to proceed with a DIEP and then have tissue failure. And I don't want to wake up without a NOOB. I am calling it NOOB instead of FOOB for New Boob, I am not going to consider it a fake boob. I healed fairly quickly with the mx so I am going to hope for the best. I did have a lot of head and shoulder pain from positioning during the surgery and I did experience um digestion problems during chemo, so I will be expecting those things. The surgery is expected to be 6 hrs. I think a CT is part of my pre op but I don't have my paperwork yet.0
-
Disclaimer for my update: (identical to post in DIEP 2011 thread) For those new to the thread - all of my issues are due to having the surgery so close to my final chemo (3 months - but needed to have the 2nd mastectomy toot sweet) and even more because I was on Avastin for a year and also only off for 3 months - Avastin works by blocking the growth and repair of fast growing blood vessels (strangling the tumor, but really slowing down the DIEP healing). What is going on with me is highly unusual, so don't let it inform your opinions about the DIEP - I would do it again in a second even knowing I'd have these issues.I went back to the PS today to have him reassess my surgical wounds. I am 8 weeks out. He explained that my abdominal wound (about a nickle around and about an inch deep) was not going to heal because of the continued seroma fluid draining from it. It seems that I have a long narrow cavity directly under my scar that healed as a cavity when I still had my drain in (he pulled it at 5 weeks and it was still putting out over 50cc a day then). What he will now have to do is to open me up along the same scar and create a fresh wound that should heal correctly. He believes that he will be able to do my stage 2 revisions at the same time and said that he could take off my muffin top on the hips (is this dog ears?) at the same time without needing to lipo since he will have the scalpel in hand. He did say this would not involve the pain of stage 1 since the skin is already stretched and settled.My larger wound is healing differently. It is in the area under my arm that was the most damaged with radiation. The flap looks marvelous, but the wound is still about a quarter in size with a ping pong ball sized hole underneath. There is no seroma fluid building up, it is just taking forever because of the Avastin I was on for a year. He will be able to work on this during the stage 2 revisions as well. I forgot to ask just how he was going to take the larger Frankenboob down to a C to match the smaller Frankenboob. Since it is about a DD, that would be a lot of lipo - I'm guessing he will cut along the scars and excise tissue instead. That side needs a little tightening up to match as well.So I guess in layman's terms I am going to get my "front end alignment" and these gaping holes fixed at the same time. In the meantime (gotta get insurance pre-approval and then get on the surgical calendar), I get to continue the fun of wet-packing these wounds twice a day!0
-
So...
I have had some pain for 3 days in the reconstructed breast. Had an appt. to see the oncologist for a follow-up today. It has been over a year since DIEP surgery and it appears that I may have necrosis? I am scheduled for an MRI next week but the oncologist said do not worry, we can go back in and take it out. Oh My Gosh! A year after surgery/chemo and I will have to go back in and have another surgery?
After having the hernia and now this, I am beginning to think I may have picked the wrong surgeon.
0
