Diep 2012

Anonymous

Nice to see the new ladies and hear your experiences.  Continuing the healing thoughts!

Sarahmfallon

Thankfully even with the swelling, my stomach is much slimmer than before the surgery, I dont have my "pouch" anymore   I just want it to go away, the feeling when I touch my stomach.  Its hard to describe, it doesnt necessarily hurt but its a little sore and a weird feeling.

bdavis

Sarah.. I am 3.5 months post stage II (post lipo) and I have tenderness like a deep bruising. I notice it most when I wear something that sits across my mid section. I do not have pain at the abdominal incision, but up around the belly button I do.... I am larger around that section than I was before.

Anonymous

I'm still so curious about the abdominal compression vs. no compression options (my PS said he does not use it...but didn't specify if that was just for the first surgery or if that was also his stance post the second surgery).  I see lots of folks who are in compression 24/7 for weeks, especially after surgery #2.  Can anyone with lots more experience (and information than I've been able to find) explain?

Thanks!

Sarahmfallon

Yes I still have to do the lipo, my dr will be doing that when he does that 2nd stage and puts in the implants but thats probably 4 months from now.  I dont have much pain around the scar either, just above that   My new belly button is still gross and scabbed though, I havent touched it much.

redninrah

sarah-mins scabbed over pretty good, which is a good sign...healing well.

Davies- yes why is we are bigger around the belly button than before, it doesnt make sense....i told my PS, and i heard from his recep that he does do lipo for touch ups, but its under local??? does that make sense

ellena

Betsy- thanks for listening. Must've stretched it too far like you said a tore some scar tissue because hurts almost like it did a month ago. Hurts to take a deep breath. I can still feel the stitches on the chest wall.

Sarah- sleeping on my back was the worst and then trying to get up in the morning, I would pull up with my sheets. My daughters would make fun of my bed hair, but whatever makes them smile is fine with me.

My youngest daughter is 11 and has been very inquisitive and concerned that I will still be the same once this is all over. She's seen my noob and my " ear" flaps on my hips.she thinks it's all pretty cool. I often walk around the house without a bra and she loves to point out how one hangs lower than the other. My 14 is very tight lipped and has never talked about it

diamondslayer

I wanted to have DIEP after my BMX but my PS said he doesn't use the hip area, just the belly. My heart sunk when I heard that I had to have implants instead. I had an open hystrectomy last July and before that a tummy tuck with other surgery so there actually wasn't enough tummy anyway. Now I have expanders amd am waiting for implants.

TexasRose

I'm 2-1/2 weeks out from Stage 1. My PS believes in compression. I wish he didn't. This darned binder is driving me nuts! And he wants me to wear it 24/7 for 6 weeks. I admit I take it off for a few minutes every once in awhile. It's so tight and restricting. And my ab incision and belly button are so unbelievably tight. I want this phase to pass quickly. I'm kind of miserable. Ok, vent over.

bdavis

Diamondslayer... I got Hip flaps (and DIEP)... are you committed to staying with your PS or would you travel for the hip flaps?

Red.. I am still trying to understand that.

YSA... about compression. It is my understanding that especially after lipo, you want to have the tissue adhere to itself, and for best results, compression is the best way tp achieve that. After stage I, compression is used to reduce swelling and seromas. (fluid build up)

ellena

Ysa- get some spanks or really tight bike shorts. So much more comfortable than the binder

Pelicangirl

re:he question about fat necrosis. I had DIEP on left and TRAM on right on Feb 1st. I developed some nasty areas of fat necrosis along my abdominal incision ..they felt like hard balls or ropes just under the surface of the incision. My PS just went in and removed them on feb29th while breast surgeon went in and removed axillary nodes (one sentinel node came back positive from the first surgery). I asked my PS what causes the fat necrosis..he says some people are just more susceptible ..the tissue left behind needs to re- adhere and re- establish blood flow. That is why some physicians are so adamant about wearing the compression garments. I HATE the girdle they sent me home in..it is terribly uncomfortable. I give myself short breaks from it about twice a day by switching to Spanx...the Spanx material is a little softer and stretchier but still puts enough pressure on the abdominal incision to accomplish the goal (I hope)! I have to say it has been a miserable month for me...I am sure when I finally get these drains out (this is my second set) and can stop wearing the compression garment and can wean off the pain pills I will feel much better physically and emotionally . Right now it is hard to "enjoy" how well the reconstructed breasts came out bc I am just too uncomfortable!

Anonymous

Thank you, bdavis and ellena - I think that, regardless of my PS preference (and I will ask him again why he feels the way he does), once my drains come out the spanx will go on...if nothing else, it seems like it would give some abdominal support

Pelicangirl - I hope that you get the second set of drains out and are feeling better all over soon.  More importantly, I hope that the rest of your nodes come back clear so you can breathe in all aspects of your life!

Maya847

Hello everyone, I just had a two day consult at Mayo.  Am scheduled for bilateral mastectomy and DIEP flap surgery the first part of July (surgeon is booked up until then!).  I am told the reconstruction alone will take 12 to 15 hours with a two to three month recovery.  (that does not include the bilateral mastectomy surgery which will take place at the same time.) Is this consistent with what others have gone through or are being told?

Anonymous

Maya847 - yes, that is consistent.  I was told that my BMX would take about 4 hours and my DIEP would take 12 to 14.  I've seen gals here who were in surgery for up to 20 hours (that's rare but not so rare to see 16 or so).  Recovery time is consistent, too.  Some gals in great shape seem to take a little less but 2-3 months is considered pretty standard.  I believe that 3 months is the minimum time most surgeons wait before doing stage 2 surgery, as well.

ReadingMama

Juls, I am just three months out now.  I am a pretty slow recoverer.  I am not 100% back to normal, maybe 85% - 90%.  But, I could definately handle a 4 day road trip.  I was off from work for 10 weeks, but started back a month ago I guess.  Go to a Y strength training class 2x week and have increased my walking to 3 miles 4x week goal.

Maya - My surgery was 14 hours, although I think PS estimated 8, we expected it to be shorter and I took 10 weeks leave from work.  PS said 8 weeks, but I needed more time, as I said above I tend to recover slow.

Sarahmfallon

I had a bilateral and DIEP reconstruction almost 2 weeks ago.  I went in the hospital at 6:30am, they started around 8am and finished up at 8pm.  My doctor did the mastectomy which took about 2-3 hours then my PS did the DIEP which took the rest of the time so all together it was a 12 hour surgery.  He wont do the rest (implants) until about 3-4 months from now.

goldlining

Maya847 It was about 11 hours for me including one mx, opening up previous mx scar and bilateral DIEP. I ran a half marathon at 6 weeks after but was off work for longer because HR required surgeon's approval, and he saw me at 3 weeks (too early to approve) and wasn't scheduled for my next appointment for another 8 weeks. The first week or two are really slow, but a lot of people have posted about going to the mall for a slow and careful escape from boredom within the first week after leaving the hospital. I was doing computer based work projects without HR approval within 3 weeks. By 5-6 weeks after, you would probably be doing many of the things you were always doing. I found the fuzzy brain was harder to work with than the body comfort but at 8-10 weeks, there were few excuses left.

bdavis

Maya..  I had a BMX and bilat recon (hip flaps which required flipping me) and surgery was 9-10 hours all in.. I had two PS and my BS, but if you have one PS, it would take much longer. I wouldn't have agreed to a 15 hour surgery with one surgeon. Most work as a team to cut down on the time. I did wait 3 months post DIEP (4 months post Hip flaps)  before stage II, but was not actively recovering for that period. 7 weeks after my DIEP flap I was attending my 30th HS reunion three hours from home for the whole weekend... and 9 weeks post op I particiapted in the NYC Avon Walk (39 mile walk, of which I did 23 miles)

Pelican.. I would suggest wearing compression right away.. They have girdles that have zippers on the side so you don't have to pull it over the drains.. and they are crotchless for easy bathroom use... look at www.marena.com

iswimibikeirun

@goldlining:  Thanks for sharing the "fuzzy brain" v. moderal physical activity.  I suspect I will need less "brain power" to watch my footing as I amble about post-surgery than I will to prepare for a trial (which I'm scheduled to defend in Mid-May--8 weeks after my BMX & DIEP).  I haven't yet turned in my FMLA paperwork (ha!  and I actually practice some employment law), but the PS doesn't want to do it until my pre-op on March 13.  Sounds like I may be able to some easy craft projects and read "pink" novels after surgery, but not concentrate too much on details.

 I realize what my 2 biggest fears are regarding my surgery.  I think I can deal with the drains and other stuff.  I'm not looking forward to sleeping on my back and I have  DREADFUL fear that I'll develop hives on my back (from stress) that I won't be able to scratch.  I literally had nightmares about not being able to scratch 2 nights ago. 

Snobird

My BMX/DIEP was done in 7.5 hrs with 2 PS and 1 BS. I was driving within 2 weeks short distances. I worked from home 2-4 hrs. Per day as I felt up to it. I was downhill skiing 5 out of 7 days for 4 weeks straight on a previously planned vacation that I refused to miss out on. Where there is will there is a way. I was 56 at the time. It seems to me that the longer surgery times for most people is due to there only being one PS doing the surgery.

Snobird

My ski vacation was at 5 weeks post surgery.

goldlining

iswimibikeirun I get hives too, from stress and other things. Had one after my CT scan in the pre-op assessment. I took valium while I was waiting and after the surgery never took another one. Didn't even need to switch to shorter half-life and taper. Other people take xanax or another medication for the stress of waiting. I found the anaesthesia/paralysis drugs were awesome for the built-up muscle knots from stress. They were g-o-n-e. 

With my fuzzy brain I struggled to find words in an oral consultation report to a client (client lawyer requested no written report). With writing, I could function; it just took me longer. At even 3 weeks, I was doing detailed analysis including statistics, but I wasn't efficient. I would view recordings over and over, and my mind would wander as I tried to grab what I was seeing. By 8 weeks, I was still tripping myself up a little trying to express myself but I was participating. Most people wouldn't have noticed, or would have just thought I was a little absent-minded. I had the same fuzz after lumpectomy and mastectomy, and those had very little physical impact, especially the lumpectomy. But the anaesthesia lingers.

Funny you mention employment law and yet not doing the paperwork yet. My program teaches modified work and return to work accommodations. In fact, it was a course I might have taught this year if I had not been off. That's a core course and has been a "best practice" in this jurisdiction for 25 years. Yet my university doesn't do it. I had to be OFF work entirely until I was allowed to return entirely. The shoemaker's children indeed.

RetiredLibby

I'm the one who had a 20-hour surgery for BMX and DIEP. The BMX was about 3 hours and the rest was DIEP. I went under at 8 a.m. and was extubated at 4:45 a.m. the next day. We happened to have the East Coast earthquake right in the middle of my surgery -- epicentered about 50 miles SW of where the surgery was taking place. By all accounts, the OR was rockin' and rollin' that day! I only had one PS and it took so long because I am a very free bleeder with lots of capillaries. Both the breast surgeon and the PS commented to my DH that while I had told them repeatedly that I was a free bleeder, they finally understood what I meant by that. DUH! My recovery took a long, long time. I don't have very many reserves of strength like that, and although I am relatively fit, I just don't have much beyond that. I am also an asthmatic. I took 6 weeks off work, expecting to be back in office for half-days at that point. Instead, after 6 weeks I began working from home half days. I didn't go back into the office for half-days until November. I was still not working full weeks in the office (working one day/week from home) when I had Stage II 2 weeks ago. (Of course, I also had some other difficulties, including my sister's progression to Stage IV breast cancer and her death on Valentine's Day). I will begin working from home half days tomorrow and do that for a week or two until I progress to full days from home. Then I will do half-days in the office for a week or two, and then go back to full-time but probably working one day/week from home for the foreseeable future. I will have an ooph and salpingectomy in late spring/early summer, when I will start the cycle over again.



My lengthy surgery and extended recovery are NOT typical. They are at the very far end of the spectrum. Apart from my ab incision opening up in Stage I, I had no ill effects, no crises, no damage. I was just exhausted.

ETA: I should mention that the dilaudid they gave me for pain severely hampered my recovery immediately post-DIEP. I was seriously miserable and stoned, even on micro-doses. I was dizzy and sick and couldn't focus my eyes and had terrible hallucinations. Once I got away from the hospital on day 4 and home, I quit dilaudid and started on tylenol 3, which took care of the pain. I only had 3 of those before I went to regular strength tylenol on day 5. After Stage II, I had 12.5 mg of demarol in post-op and 1 tylenol 3 before I went home. I had one T3 at home and then went to regular tykenol until day 5 when I stopped. For me, the narcotics made everything much worse.




L

CookieMonster

I think I'm also at the outside of normal time. I had a unilateral mastectomy with DIEP and the surgery took 14 hours. There were 2 PS there along with my BS for the mastectomy part. they began around 7:30 am. Around 11 am the BS called my husband to say that she was done and that everything was going great. The next call he got was at 4:30 saying that they were about half way done. That was a HUGE surprise as we'd been told 8-10 hours for the surgery. When I came to in recovery - the room was VERY quiet (turned out I was the only one there), and when I looked at the clock, I didn't believe that I was reading it saying 10:35, but indeed it did. The "bonus" of being in recovery that late - they let my husband come to me there instead of waiting until I was in my room.

All the nurses in the hospital oohed and aahed over the job my PS did, apparently he's a perfectionist and he really did do a great job. none of my incisions opened up, my discomfort was minimal, I was off pain meds once they took the IV out before I went home, and I'm pleased with how the foob looks. Stage 2 is coming probably this summer so that perky and droopy will match once again.

I had a very difficult time focusing when I went back to work. When I was in the classroom teaching I was OK, but writing lesson plans and grading and that stuff was tough. Even now I struggle at times though, but hopefully things will continue to improve. That's part of why I want to wait until the summer for stage 2.

TexasRose

I had a uni mastectomy on my healthy breast (cancerous side was gone in 2009) and bilateral DIEP almost three weeks ago on Valentine's Day. My surgery lasted 9-1/2 hours I'm told. I had two PS. Not sure who did the mastectomy part. I'm guessing one of them.

I'm off pain meds and doing ok. Still very, very tired. Went to the grocery store with DH earlier today and had to come home and take a nap. I was absolutely exhausted. It is a beautiful day here and I am thinking about having a beer later this afternoon and enjoying it on the porch in the warm sun. I haven't had a drink since before surgery, so I think that might just be fun. I'm feeling like maybe I am starting to turn a corner a little bit. Feeling more like my old self everyday.

Happylibby- I am so sorry about your sister. (((hugs)))

RetiredLibby

TexasRose, thanks so much.  I couldn't go to her funeral because it was the day of my surgery -- I'm in the DC metro area and she was in Ohio.  I did make it to see her the week before she died, after she had surgery to remove her colon (she contracted c-diff in the nursing home).  It was pretty brutal. 

It has been a very difficult couple of years -- my mom (a bc survivor) died in June 2010 of metastatic colon cancer.  I was dx with bc for the second time in June 2011.  All the stress could have something to do with why I remain so tired.  Retirement is looking pretty good right now!

Thanks for the hugs ... it all helps!

L

sadie5254

My surgery was eight hours.  Left mastectomy, diep, beautiful reconstruction.  I'm in Pittsburgh and the PS is a genius.  This surgery was the easiest I've had to recover from and I've had 2 C-sections and a hysterectomy, and yet still a successful diep.  I am now 4 weeks out and am feeling better each day.  I'm tired still and I have odd pains here and there.  My PS advocates the binder and frankly, I love it.  Though I don't have to wear it anymore, I still do and I usually have it on to sleep.  I did pick up an infection in the hospital at a drain site and that did set me back, but it's behind me now.  Though I still freak out when I notice something odd - a rash on my arm where the picc line was, my stomach so hard one minute, not the next - I'm hoping I'll soon settle down emotionally.  I would absolutely recommend this surgery to someone on the fence.  Come to Pittsburgh if you can and get Dr. Gimble to do your surgery.  The man's amazing.

Maya847

Thanks to all who responded on the length of their surgeries and recovery time.  Makes me feel much better.     Blessings to all.

wrsmith2x

I am 18 days post op for BMX and DIEP and wonder what is phase 2 and 3?  Not sure if I will do nipples and tattoing but want to know what is next.  Thanks for the info.