2018 DIEP Surgery
Comments
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wow - such great words of wisdom & information... You ladies are terrific.
Great info about the compression bras/binders. I ordered an athletic type of bra (front zip). The swelling might be improving (despite not having drains) as liquid is dripping from my incisions (gravity). Sorry if too descriptive! Since I'm all about data I made 4 points on each breast and am measuring them to determine if the swelling is getting worse or improving.
I appreciated hearing about where each of you are at during recovery. I feel out of control but need to relax and know this is not a speedy process. My job has me on the schedule 3 weeks post surgery but I don't see that happening...
Janky, I only had lots of DCIS with invasion - far from stage 4 so I have no information or experience but I wish you good luck xoxo
Thank you guys for getting me through this tough day
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justkkeepmoving - I am sending prayers and positive energy your way, hoping for a speedy recovery! I am hoping to find someone stage 4 that has undergone this surgery - I can't be the only one
Best wishes to all of you, recovering or waiting for surgery!!!
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justkeepmoving-we’re all here for you and in your corner! Just let us know what you need. When that sports bra comes in make sure it’s not tight. The fit you’re after is very very very light support for the breasts. You want just enough to support lightly but not enough to compress. Compression can compromise the flaps by restricting blood flow. I know all my sports bras are compressing and would not be a good idea in the least post-surgery. Check out a genie bra or have your DH pick one up for you. They come in S, M, L, XL, XXL so it’s not rocket science for him to pick out. I’m a 36/38C and took a L.
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Leatherette - I had DIEP on only one side and immediate reaction surgery, the new boob seemed enormous. By the 6 week mark, the swelling subsided and I was able to I see that the new one was actually a little bit smaller than the unaffected side.
Carin
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Hi everyone I can’t say much but I’m OK my issue is my left hand and right hand is swelling I can’t make a fist I have my lymphedema sleeves on but I’ve never had swelling it’s all been prophylactic I’m a little worried about that the nurses won’t do anything till morning I guess they can’t did anyone have their hands swell and go numb after surgery I am having some pain in chest and abdominal sore back an slight head ache. No caffeine till morning I wa the sing only Toradol but asked for fentynol recovery an IV diladid every 2 hours now I gets worse the closer to the 6hours for Toradol
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Surgery was 11 hours 30 minutes 7:30-7:0
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Carmstr835,
Congrats on being this side of your surgery! YEAH, it’s behind you now!! Swelling??? I can’t say if just my hands and arms were swollen...I was blown up like a balloon! My whole body was enlarged. It’s not uncommon so don’t be too concerned. You are just out of a very long surgery with a lot of anesthesia. It’s going to take a few days for your body to adjust and process the trauma of the surgery.
I do remember my thighs were HUGE! And they were numb. It was a very odd feeling when I walked.
Praying that you will get some rest tonight and tomorrow will be a better day.
Hugs
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Carmstr835, I can’t believe you posted already! So glad you are on the other side!
I have had a temp today, for a while, but it was not super high, and it’s coming down on its own. High of 100.7 down to 99.5. I got scared when I first felt feverish! I have laid low and my sister is waiting on me wonderfully.
I was not told to wear any kind of compression. They gave me a surgical bra, but it was very light support. It got itchy because it’s synthetic, so I switched to the all cotton nursing bras I had been wearing during tissue expansion. Kindred Bravely- they are super comfortable and give light support. And easy to pop a boob out to check on it!
Wishing everyone comfort and health,
L
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Carmstr-welcome to the flap side! Do your lymphedema sleeves stop short of your hands or do they come down over your hands? If they don't come over your hands it could be displaced fluid retention. If you're wearing compression on your arms only, the fluid has to go somewhere...kind of like squeezing a lon skinny balloon in the center and the two ends expand. You may want to remove them. Your whole body will be somewhat swollen due to the fluids given during surgery and after.
Leatherette-I wore long cotton tank tops under the bra they gave me post surgery for the same reasons. My skin is super sensitive. I choose my clothes by how soft they are.
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carmstr835-
Yeah!🎉
I agree with Lulu - possible it's the normal post op swelling but PLEASE ask to have it looked at by a breast surgeon or other other doctor (someone familiar with lymphadema).
A common and good regimen is acetaminophen every 6 hours, ketorolac every 6 hours (so something every 3 hours) -- I was given hydromorphone 2mg by mouth every 6 hours as needed for pain and personally that was too strong for me but I'm a lightweight (2 drinks and I'm gone!). I liked oxycodone better and would have preferred oxycodone 5mg.
Anyway -- take good care to REST! SLEEP!
Thank you everyone for the compression info. The bra I ordered is a large and normally I'm a size 4 - I have no idea what my cup size is but I was barely a B before and doc said he made them similar but holy moley they are big (for me)
Leatherette -- I hope you feel well today xoxox
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carmstr835, happy to hear from you. Best wishes for a speedy recovery.
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Carmstr, thanks for the post, you are now one day post-op, hopefully the worst is behind. Please know us gals who have yet to do our surgery really appreciate your update! Rest well fellow warrior!!
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leatherette,
I had single DIEP. My reconstructed breast was larger than my natural breast-wider too. Still some swelling at 3 weeks and again at 3 months. Not hugely noticeable swelling at 3 months but PS felt it had a little more settling to do. I’m now at 7 months and am confident that the phase 2 work will result in two fairly even breasts.
I forgot who was asking about driving working etc - here’s my experience
Driving began when last drain was out at 10 days. I did not have any narcotics after the first night. No driving with drains or narcotics
Work - i went back at 5 weeks- desk job.
Tired - took it easy and naps for first few weeks. Did walk daily, progressively farther and longer over the weeks as exercise helped me recover.
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Week 2 post-op complete! All drains are out and driving restrictions have been lifted!
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Hello,
I am post NOLA DIEP flap Nov 2016 stage 1 and Nov 2017 stage 2. I have a lump/bump on left breast mound-uppper midline which reveals nothing on ultrasound. I have f/u with surgeon tomorrow. Has anyone had any mysterious lump/bump in which fatty necrosis has to be ruled out via biopsy? Any feedback appreciated. Otherwise, no issues and love love the results obtained from NOLA -Dr. Trahan/Ordone's work!
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That is unusual. Please keep us informed. Was that side radiated? Dr Trahan did my surgery too. 8 weeks ago, almost. He is a wonderful gentleman as well.
Dawnann
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cev20
Driving again and having those drains out are blessings!
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Excellent news, Cev20! My fever went away, and I feel much better today. I did a lot of walking. It’s supposed to be fine to walk as long as you want on a level surface as long as you feel fine and don’t go fast/ raise heart rate, right?
Thanks for the well wishes, Justkeepmoving. Nice to come here and get a little extra love!
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Feeling sick to my stomach and hot all day. No fever. Finally had BM and feel slightly better. Ugh!
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Cev20, Leatherette, OCDAmy & carmstr835
You ladies are rock stars! Cev20 congratulations on getting your drains out and being able to drive. Leatherette, glad you’re feeling better, OCDAmy, praying you continue to feel better and carmstra I can’t believe you are up and posting already glad you are doing okay. I love this site and everyone you has gotten to the other side continuing to share and pas on the knowledge and experience for those of us who are still waiting for our turn. Thanks everyone
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Wow this blog moves fast! I didn't check in for one day and I had 2 pages to read
Justkeepmoving .. you got great advice from Lula and Bella..
ABDOMINAL BINDER —-> my PS said no binder until the last hip drain is out! For me that happened at the end of week3. I am now 5 weeks and 2 days post op - been wearing binder 24/7 for last 2 weeks .. def have to pull down at night low over hips and it stays! Had post op today and I am graduating to spanx at night and binder during day for 2 more weeks!
DRIVING —> 3 weeks short trips, week 4 I drove 180 miles to visit my parents because my dad was not feeling well! It went great .. just stopped a couple of times to pull down the darn binder!!
WORK —> I have a desk job! At week 4 I got my PS to release me for up to 16 hrs per week from HOME only! This works great for me because I am on short term disability which pays 60% — the 16hrs will make up the other 40%. And I have been approved for 8 weeks leave so I don't plan to go back full time until the beginning of August
OVERALL —>. At my parents last week I was still slightly bent when walking (my mom constantly reminded me !), had on and offf pain in my abdomen, and I just didn't feel strong. This week ( 5 weeks post op) is a total change. I am walking straight, for longer distances, I'm cooking real meals for myself and I feel really good , almost back to myself again! Every day it's noticeably different!
Best of all I scheduled my phase 2 today for Sept 11 and am so excited after talking with my PS about the things he plans on nipping and tucking!
Oh and camstr I had swelling in both my hands! My right with the IV was especially bad. My left (lymphedema risk side) worried me as well - I did the manual self draining and wore the sleeve AND gauntlet during the day at the hospital and the OT came in and wrapped my arm the 2nd night — to be honest I couldn't take the compression and overheating so removed the wrapping in the middle of the night and put the sleeve back on in the morning. All is well now — turned out to be normal post op swelling .. but definitely make sure you are wearing the gauntlet or glove with the sleeve!
Leatherette - glad your fever is gone!
OCDAmy - honestly , what a difference a good intestinal purge can make!! 😉
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Few questions:
Do/did you have numbness in pubic area and upper/inner thigh? Does that go away?
At some point do you start using something for the scars?
When do we consider the flap to be safe and not going to fail?
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OCDAMY, I had numbness in my pubic section and my upper thighs. Mine was caused from fluid retention. My PS said it might take several months to eliminate the fluid. My upper thighs cleared up within two weeks of surgery. I still have some numbness from my naval to my pelvis. It is getting better though.
I always considered my Flap to be safe...ignorance is bliss😱. I was just extremely careful to guard against infection. I just wasn’t going to let this thing go south from an infection. But I have read cases where women got an infection months after their surgery. I did pause for a moment the first time I got into the pool this summer...but all is well. I know other things can go wrong to cause failure...poor blood circulation in your breasts. If you think something isn’t right, by all means talk to your PS.
My doctor recommended Silagen. It’s a clear gel that works very well in getting the surgical scars to diminish and fade. He sold it at his office for $105. It only lasted me about a month because I thought “more is better”. Then I found it on e-Bay for $69 with free shipping. I just saw it offered at my opthamologist’s office for $52. He offers it because there is also a skin care clinic in his office. I have been better aboutthe quantity I use and the second bottle has lasted several months now.
Hope this helps!
Praying for a miraculous recovery!
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Hello to all of you FABULOUS ladies!
I had diep flap surgery on June 22, 2018. I was filled with anxiety the week leading up to surgery. 9 hours and I woke up with a huge breast. I went home in 4 days and was SO thankful to stop receiving heparin shots. They were so painful for me and one of them they hit a nerve and it literally made me scream. My two daughters (12 and 9) we in the room and it really scared them.
Anyway, my husband got me home about 7pm on the 25th and put me to bed. I slept SO good that night, being in my own bed and not being woke up all the time for vitals and such.
The next morning, I got up with my husband and he did my drains and made sure I was taken care of and he went off to work. A few hours later I noticed my breast was hot and swelling. My flap was on the bottom of my breast so I couldn't see it. I got out my phone and took a picture. The flap was purple and turning black. I started to freak out. I sent a text to my B'S with the pic and she immediately called me back. Needless to say, I ended up having an emergency surgery. The flap had died and they removed it along with the fat transferred. They have never had a case where the flap died 48 hours later. I've spent the last 2 weeks recovering from 2 surgeries and trying to decide if I made the right decision or not withe diep flap.
Tomorrow morning, July 13th, I am having an expander put in and have no idea what to expect. I also chose to keep my nipple if at all possible and not sure if it will make it. It seems to be improving, but also seems a part of it is dead
I hate this process. The whole thing. I've always wanted a tummy tuck and a boob job after losing 120 lbs, but didn't think it would happen like this. I'm afraid after all this I won't like my body even more than before.
Thanks for listening and hope everyone is doing well on their journey 💗
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Oh gosh BCSilverLining, I am so sorry you lost the flap. That is my fear, I check the breast incessantly to make sure it looks ok. Did they say why you lost it? Had they been checking blood flow in the hospital regularly?
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OCDAmy- Silagen is great for the scars. I was told to wait on using it until after stage 2 due to scar revision...waste of money if they’re just going to open the scar back up again. Other ladies I know bought silicone scar strips and used those with great results. Silagen is a silicone gel. Flap loss (if it’s going to happen) typically happens within the 1st week. you lose it because it doesn’t get the blood flow it needs. That’s why they check blood flow so often in the hospital. It takes about a week for the newly sutured blood vessels to really heal and hold. Infection can happen anytime, but usually within weeks of the surgery.
BCSilverLining- I’m so sorry the flap failed. Just hang in there. SGAP (butt lift) is a great secondary option for natural tissue recon. Hopefully they’re just putting the expander in as a place holder.
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Hi OCDAmy,
Yes, the first 24 hours they checked everything every hour. I also had to keep one of those warmers on my chest. It outputs warm air consistently and was helping blood flow. Personally, I think the heparin shots were keeping my blood thin enough to pass through and once they stopped the heparin, my blood couldn't pass through.
I am at one of the best hospitals in the mid-west and have some of the greatest top-notch doctors/surgeons. I'm not upset with them or question their abilties, I can only chalk it up to my body said no, that it didn't want that at all.
Every situation is different and please don't be scared. All we can do is listen and follow care instructions. Even with that things aren't always going to work out. I'm thankful we caught it in time and hope that things work out more in my favor moving forward
Just follow what your care team tells you and listen to your body💪
-M
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This is my first time posting here. I had BC in 2003 and had mastectomy right breast, chemo and radiation and have been clear since. I couldn't do implants because of rad and only knew pf the TRAM flap which didn't seem appealing with having to take muscle. Now I have seen a PS in Dallas for DIEP. He is very posit8ve and I am so ready to do this and be done but also scary and nervous. I have been reading a lot on here and so thankful for this forum. I have made a surgery date of 8/22/18. I live in OK and travelling to Dallas. About a 5 hour drive and a bit nervous of return trip and being so far from the surgeon. 😱😱. Has anyone had recon at Texas Breast Recon at Medical City in Dallas? Thank you all for sharing here. Such a blessing.0 -
BCSilverlining, sorry about your flap loss. You seem to have an amazing attitude about it. I wish you the best with your next steps.
Like OCDAmy, I am checking often for changes in my flap. In the hospital, they checked every half hour the first 24 hours, then it went to every two, then three hours. Now, I don’t see the PS until Tuesday, 13 days later. Not much of a taper.
In the interest of keeping a little what to expectdiary for those whose surgery is upcoming, I am 10 days out. I had a little temp today, so just working on a quilt all day to be safe. I may have walked too much yesterday. I did do a 20 min. walk this morning to keep things working. I have no pain when I go from laying to standing, but I do sometimes look like an overturned turtle as I try to get up carefully. I feel the skin around my abdominal incision pulling, and that hurts a little. I’d like to be able to lotion the area around the incision, but will wait to see the Dr. on Tuesday before I do anything besides showering.
Take care,
L.
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So for entertainment purposes, I've been reading some old forums because you ladies with your soft warms breast are really starting to bum me out.
I already knew about iron bra from the great TE days but something new I learned about was the Ken doll effect and the marble in the belly button! Oh my god, this DIEP recovery is THE most depressing thing I've been through. God I needed a laugh! 😂Back to a serious note. BCSilverLining, I agree sometimes we really don't know what our bodies want or will do even when the best of us are in tune. I'm pretty sure my body will be pissed at me many years to come. Right now, at this present moment, I regret this surgery but the way I see it is I chose this path and its up to me to finish what I started. No turning back now! Good luck to you. I feel for you during this set-back. I don't know if you are spiritual but I'll throw this out there. I listen to a lot of Pema Chodron. She has gotten me through some tough times of uncertainty.
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