DIEP Flap Reconstruction 2016
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Hi! I am so glad I found this thread. I had my BMX 8/19 then my DIEP 8/29 (after a clean pathology report can back).
This surgery has be a tough one for me! I am eleven days post op and find walking painful for my lower back. Everyday I cry at some point out of frustration or because of the pain. I wonder whether I should have just put in implants. Today I am feeling just a little bit better.
Reading your DIEP stories is reminding me that I am not alone and that this recovery is a process.
Love and light,
Tig
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Other than the list of the top of this board, any items I should bring to the hospital?
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Tigger, I think, from what I hear on implants, DIEP with own tissue is more of an ordeal all at once. But when it's over, it's over. I admire these gals that have 4-5 surgeries, expanders, implants, new nipples, tattoos, infections.... I am a chicken, decided to do the one and done (hopefully). Keep me posted as I am following your path in December, if I ever survive this chemo
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I'd also be interested in learning of recent experiences with DIEP surgery. Deciding on the reconstruction was hard, but I'm doing it. Tissue expanders are in. As for the exchange, I keep going back and forth, implant or DIEP.
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Jiffrig,
I hear you! I wanted the same. Then the diagnostic mammogram and ultrasound from my second opinion claimed the tumor was large and might have invaded the pectoral muscle. So the conservative route was to place a TE in the affected breast just in case radiation was needed.
I was very bummed by this since I never wanted implants or to sacrifice my muscles again. I had implants for 17 years and finally removed them in 2014 so I would never need breast surgery again!
Guess I don't get a choice😳😕😆
When is your sx
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tigger, my surgery is 12/13. Hope it can go as planned, but as you know, nothing is quaranteed! I am more worried about my "tummy tuck" recovery
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Ida,
Implants are a simpler recovery.
I didn't want anything in me nor the feeling of something under the muscle. I also don't like how they move when you use your arms to exercise ordance. I had silicone implants placed under the muscles for almost 20 years.
The silicone implants start to break down after 10 years. I don't want to be 70 and needing repeated sx. When I ex planted in 2014, my left silicone implant was bright yellow all the way through with a yellow biofilm. The PS took a video to show me and sent it into Mentor for testing. Mentor brushed it off as a biofilm that happens sometimes when your body in trying to get rid of the foreign object.
Creepy.
Follow your gut and know that you can change your mind if you try implants first then want DIEP.
Tig
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Thanks, Tig. I am going to be following your progress as I made the decision. My TEs are over the muscle and the implants would be also. I'm still on a drain and limited movement restrictions, but so far, my chest feels just a little sore when I move. Your description of the implants is the precise reason that I would prefer to have my own body moved around. Just wrapping my head around the additional surgery and recovery. I'm going to follow your progress!! And Jiffrig's!!
Thank you so much.
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I can. My PS had my room at 32 degrees, with a heater on. They believe it helps the microsurgery heal. My boyfriend almost passed out when he came in the room the first day.
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Not all doctors use the hot room. My didn't!
I started out with tissue expanders and planned on implants, but 2 infections and 3 additional surgeries later, they were out of the question.
My doc wanted to do a latissimus dorsi flap, but I didn't want to move muscle. I did some more research and ran into all kinds of complaints about implants and LD. I met with a couple of ladies who had them, and they weren't impressed.
Then I read through all the posts on the 2014 and 2015 DIEP threads. I was pretty impressed that 100% of the women were happy with their choice, even those who had a flap fail! So I opted to go this route.
I am delighted with the results. I won't ever have to worry about an implant failing, migrating, or getting infected. I won't have to get it replaced when I am 65 and 75 and 85 ....
My pectoral muscles are still a funky after having had the expanders, but not nearly as bad as when I had them.
My original PS said he preferred putting them under the muscle because they didn't get enough protection when placed above. He was not happy that I decided to go with the DIEP, but I am confident that this was best for me.
I was terrified about the belly incision, but that is coming along nicely. I remember having to walk around like an old lady, but I had a walker at home that took some of the pressure off my low back. It did stretch out fairly quickly, and now it is a distant memory.
Tigger, you are only a week or so out. It will get better! Rest more and give your body time to heal.
Katiebird, you won't need anything in the hospital other than a phone charger. I don't remember much at all about those 4 days.
As for drains, a lanyard or two is all you need. I had sewn pockets into a couple of hoodies using the hood, which worked great, but for my DIEP I mostly used the lanyard. The lanyard is especially great for a shower sinc you can hang it out of the way.
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BigSister, thanks for the info and encouragement for the DIEP. It seems challenging but I think I can do it. We will see! 😳
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It is a blanket that has warm air flowing through it.
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Good morning! I just noticed my nipples react to touch even though I can't feel them! How cool is that😊 Maybe I wil get one protective sensation back?!
Love and healing vibes, Tigs
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Tigger, that is so cool! Did you have a nipple sparing surgery?
I was told that some feeling will return as nerves grow back. It takes a long time. I couldn't say how much has returned.
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Big sis,
Yes nipple and skin sparing mastectomy with DIEP flap reconstruction. I can't feel my finger with my breast however the nipple responds.
My left breast looks pretty bruised right now. I have my post op visit today so hopefully I'll get drains out and some good news.
When did you notice the feeling returning
Tigs
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well ladies, I just had my 3rd stage two! Lol. Well, she lowered my belly scar all the way to my groin. I can't look yet, as I'm wrapped up like a mummy. Compression garment, and my legs are wrapped up as well. She took fat from my inner thighs and knees to build up my breasts. I'm an unusual case for her, as I guess I'm very picky. Don't mean to be, but I'm a fit 47 year old, and I'm going to fix whatever I need to.
I'm a little sore...but my left knee last night was agony. I think swelling behind all the wrappings built up....or hurt in my calves, then moved to me kneecap. But, I woke up with no pain this morning.
I have one week out of work, and two weeks of compression. I have one drain due to the belly scar revision. She pulled a lot down under the skin. I am supposed to be as still as I can, but still move around! Still is good for the belly healing...move around some to avoid blood clots
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stellamaris- thanks for the comments about the breast lift was wondering what the pain is compared to the reconstruction. I guess I alway go in expecting the worst, so Im never disappointed. Im scheduled for Nov 14th, and was told Id be bumped if there was an emergency. I hope not, its getting bothersome having two different size breasts. Can't wait for second stage.
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At my preadmission test yesterday the nurse had me broke down in there and crying. My dx was 2011 but when she talked to me about it I was flooded with emotion that I didn't realize was bottled up. We talked about me and my two sisters having it at the same time and one not surviving, my hair not growing back, all i had to endure since the dx and how we as bc survivors are more hard on ourselves and that our families love us regardless what we look like. She understands the need for us to feel like ourselves in the new normal. When I came out from back there all red eyed my husband didn't know what had happened. I told him long over due release...lol. Next Weds is my turn still trying to get all my stuff together for when I come home.
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Evening ladies.
Dlia, I probably won't be by until Sat if that is ok? I will send you a pm here in a second. Gosh it got here quick
I am so bummed. Cannot say how much I appreciate this place and all its members and their stories. Not sure I would be holding together if it weren't for friends and y'all's courage to share.
Past 3 days have been very painful. idk wth is going on. A pin hole has appeared just below my over flow hole and tonight during dressing change, my drainage had more blood than it ever has. BUT, I cannot use my gloved finger anymore (kind of a good thing?). So I used blunt tipped medical tweezers to pack and maybe I knicked something? No sensation so, part of why I was using my gloved finger to pack it.
I know it's few of us that have complications and I feel bad venting here because I dont want to scare anyone. So please keep in mind that most DIEP/TRAM's go fine without complications post op.
I emailed the triage nurse and told her to go ahead and schedule stage II. I am so unbelievably scared. Not sure closing up this wound is best, but cant do this anymore. I have a large fluid cavity just above the abscess wound. That breast has softened up a tremendous amount just this week. but ugh, I dont want to be cut into again
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Hello Lovely Ladies, I just had all my pre-op appts yesterday. Wow! What a long day! I'm wondering if any of you had the axillary node dissection and what you can share about that. Seems everyday there's something new for me to worry about, and that's the "worry of the day".
Wishing you all a restful, pain-free weekend!
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My thoughts thoughts and prayers are with you all. I hope you all heal quickly. I'm so sorry for everyone having complications. ❤❤❤
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Hello ladies,
I am joining the club. My bilateral DIEP stage 1 is scheduled for 9/29. Thank you all for your posts (including those with complications), they're so useful as there's so much the doctors don't tell you.
A few questions: for those who had bilateral DIEP, how long did your surgery take and how long were you in the hospital? How did they manage your pain while you were in hospital, and how long did you need narcotics for after you were discharged? Reason for asking, I had a bad experience with pain management after my first mastectomy. My hospital believes in only giving pain meds when the patient asks for it, so you have to already be in pain before they give you anything, and they tried to discharge me with only 2 days worth of meds. So I want to know what to ask for this time.
How do they lower the abdominal scar in stage 2? And after stage 1, how long was it until you could sleep on your side?
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Hi Maya,
I was given a morphine pain pump that had a baseline drip plus a button for an extra shot if I needed it, A lidocaine like On-Q diffusion pump was placed in my abdominal site to lessen the need for pain meds.
When discharged I was give a script for Norco and Tramadol. About the time I ran out of Norco my pain was suddenly going away. At 12 days out from DIEP I still need some pain meds but I can get by with less heavy duty ones.
I was told not to ice or heat my reconstructed Bellu boobs. I did ice my lower back with was swollen and hurt a lot. I'm only 12 days out and have a ways to go before I'll be back to normal.
Explain to your doctor that the literature shows Pain management is most effective when one prevents pain bus waiting until the pain is present.
HTH,
Tigs
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Thanks Tigs.
Katiebird, I had the axillary dissection. What aspect are you worried about?
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Maya, I'm most concerned with pain in my underarm that may limit my movement. I've heard that node removal can be pretty painful and I'm wondering if I need to practice doing things with my left hand since my unilateral mastectomy will be on the right side.
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From my experience, the site of the node removal wasn't painful at all right after surgery (the breast/tissue expander was very painful). I could eat, wash, use the bathroom, etc with that arm immediately after surgery. They used the breast incision to do the lymph nodes so I didn't have a separate incision. The main problem is that nerves are cut that go down into the arm, and lots of scar tissue forms from the lymphatic system being damaged.
I got excruciating burning nerve pain and cording in the arm starting 7-10 days after surgery, and lost the use of the arm. The good news is it's totally treatable with PT. I had significant improvement within a week and full range of motion back within 3 weeks. I don't think you need to do anything unless you actually get any complications. I would take measurements of your arm before surgery so you know if you're getting lymphedema in the future. Starting about a week after the drains are removed, gentle massage of the scar tissue under the arm is really helpful for breaking it up and reducing swelling from fluids getting trapped.
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for stage one are they removing nodes?
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That depends Dlia. Your Dr didn't say then maybe you didnt have any concerning nodes
I had cording too (axillary web syndrome). 19 nodes removed, 18 positive
Woke up one morning and could barely move arm and had a 'web' across my underarm.
Mayas right thou. PT, exercise and stretches work. I wasn't active here yet, so imagine my surprise!
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Thanks Maya and Simplicity, that helps.
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Dlia, I had sentinel node removal on each side.
I found safety pins were useful with the drains too - I could pin them to the Velcro waist cincher/compressor to help keep them in place.
Katiebird, face/body wipes were helpful for me while in hospital - and if you have one of those neck travel pillows that's shaped like a C? That saved me after surgery as far as getting comfy. I didn't get the cushion with the arms like Nancy mentioned, but I think those look really good and helpful too. And like someone mentioned, my daughters stuffed animals were sometimes just the right size!
Maya, I'm in NYC too. The surgery was from about 10 am to 5pm. They were good with pain management too. I went in on Friday and came home Monday. I think it was close to 5 weeks or even 6 before I could sleep on my side, but so happy now I can sleep on my side again!
Good luck and healing vibes to all
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