Diep flap reconstruction, how soon can you walk straight?

Hi

I had mastectomy and immediate reconstruction by diep 7 months ago....... 5 days is very very very early stages. I couldn't stand straight for weeks and I really do mean it - probably for about 2-3 weeks...... at day 5 I was staggering/shuffling around as little as possible. I wouldn't try to stretch your tummy at this stage, it's to early. I remember having really bad lower back pain from stooping, it really does take its toll in the early days but it all does get better and each day and week you will improve enormously. Just rest and take things easy and no stretching either up or down, twisting or lifting anything. As for sleeping, to begin with I used a V pillow and pillows at the back and pillows under my knees. Then I progressed to just pillows at top and under knees, which decreased over time. I also tend to sleep on my side and what I did was to use a pillow between my knees as I did when I was heavily pregnant, this also helped.

Hope this helps XXXXXXXXXXxxxxx 

Just remembered I was still walking stooped a bit at 3 weeks so it does take time......

Hiya Tingk,

I wouldn’t have even thought about walking up straight at 5 days (I was actually still in bed in hospital so it wasn’t gonna happen anyway!). It sounds like you’re doing really well and you really do have to give a bit of time.  I don’t think I straightened up properly for a month! (I’m 10 weeks post surgery on tues). I think people who had less tummy fat take longer but don’t quote me on that.  

With regard to sleeping I’m still sleeping on two pillows with a v pillow over the top, and a wedge under my legs, mostly because I’ve now  got lymphodema and it stops me from rolling over and ending up with a flat boob, and also because I find it really comfortable - I think the more you do it the more you get used to it.  Best wishes xx

Thanks so much for sharing your experience. It's great to hear others stories and I'll definitely keep it low on the mobility expectations! It's the sleep and back pain so sounds v similar to your scenario.

thanks

hugs

xx

Thanks for reply. I think I've been getting giddy as I don't feel too bad so definitely need to rein in my expectation levels! Standing upright seems a longer term goal now.

big hugs

xx

Don’t worry it will all happen. Just remember (and I don’t want to be too graphic) but a chunk of your body from above your tummy button to below your bikini line has been taken away from and the two sides then restiched. My tummy was so tight I was walking around at 90 degrees and going up and down stairs sideways like an old lady for quite a while. On day 5, I was home but unable to walk more than just a few steps all doubled up and I was told I was doing amazingly well. I also didn’t want big meals as my stomach felt so squashed that I soon felt full. But it does get better. You slowly stretch out again but it takes quite a while - remember you can’t do many of your post op exercises (the abdominal ones) until many weeks (6?) after surgery. I found Voltarol really helped on my lower back muscles.

Thing is if you sit and do nothing and take your medication you feel fine (maybe tired) and so you want to do things..... however your body needs to heal.

It is worth it and now 6 months down the line, I have just returned from holiday, wearing a bikini - nobody would have known I had the surgery. In fact in a bikini I look better than I did last year!!! Flatter tummy and I’m down at least a dress size!!!! 

Take care Xxxxxxxx

Thank you for taking time to respond. It's so reassuring to hear other people having similar issues. I'll get hubby out for some voltarol for the back.

much appreciated advice

stay well and rock that bikini!

xxxx

Hi Tingk

Good to hear you're recovering well. Sounds like everything has gone smoothly for you, which is so encouraging!

I'll soon be having a left breast mastectomy with immediate DIEP reconstruction. I have a CT scan in couple of weeks and fingers crossed, they find I'm a suitable candidate. I'd much rather have my own tissue than a transplant, but I'm very anxious about the actual operation.

8hrs approx under anaesthetic is unnerving me. And the chance of tissue dying etc; returning to theatre to refix blood vessels… I've been advised by my reconstruction surgeon that I'll be in the Critical Care Unit for several hours so that the team can monitor the blood supply at regular intervals.

Would you share your own experiences? Your memories of the hours immediately after surgery and the first few days after?

You were home after 5 days. Wow – that's fantastic! Did you have drains with you or was that all over and done with by the time you were discharged?

And, did you do anything special to reduce the risk of lymphedema?

I've had some helpful tips from people on this site about what to take with me for the hospital stay eg front buttoning nightwear to a barista apron to carry drains etc. So any further tips very welcome.

Apologies for being sounding so demanding. Your experience sounds so positive and reading your posts make me feel encouraged about my decision to go for a DIEP and not just opt for a mastectomy only. (The statistics on the Cancer Research UK are alarming in that 10% of DIEP surgeries return to theatre because of blood supply issues in the first few days post-surgery.)

Here's to you continuing to heal well and getting your energy and posture back.

Fx

Hi Fonty55, glad my post is proving useful. In more detail.....I had been advised that my blood vessels were quite small but this was not an issue in the end, the surgeon would advise if any concerns I expect. Before surgery they draw on your tummy where the vessels are based on the scans. When I woke from nearly 9 hours in theatre I was in no pain. The first night all night every 15 mins a 1-2-1 nurse in critical care came in and did obs and checked the circulation on my breast so you don't get much sleep! This is the critical time to ensure the blood supply is maintained. It was boiling hot but they still put a heater in my room and had blanket over the top of my boob too to keep the blood vessels as wide open as possible. They also used a Doppler? Which identifies the sounds of blood pumping through the blood vessels so they keep a real close check on it. Obs dropped to every 30 minutes on second night so still not much sleep.The next day physio came and got me up into a chair, I was terrified of moving because of the 3 wounds, including sentinel node biopsy site, but it was no problem. I was on paracetamol and ibuprofen by day 2, nothing stronger. I had a catheter and 3 drains. Catheter removed on day 2 once I could get out of bed unaided. One drain from tummy was removed on day 2, the others were removed on day 3. I had an abdominal binder and padding on tummy and on boob with a sports bra, these stay on for 6 weeks and are actually reassuring if a bit annoying. I came home on day 3 with no drains and just the paracetamol and ibuprofen for pain and aspirin for blood thinning, had tinzaparin jabs while in hospital. I'm 3 and a half weeks post surgery now and standing pretty straight and doing physio to get arm and shoulder mobility back. I still sleep on back mainly with pillows under my knees and a v cushion to minimise any strain on my tummy muscles. I had my tape and the few stitches around my belly button removed at 2 weeks and everything is going well. Still have swelling but that's normal and not causing issues as yet. 

I assume you are not expecting to have radiotherapy afterwards as I think they only do the immediate recon if you're unlikely to need it due to effects on skin etc. That's why I was able to have the immediate option. Honestly I was waiting for pain to hit me for the first week or 2 and it has never really happened! I may be jumping the gun as once the nerves start knitting back together I think you can get pain then but I'm just waiting to see if I get away with an easy ride.

 The operation is major and I was starting from a position that wasn't great as I'd been through 6 months of a really tough chemo regime and was hospitalised twice with serious neutropenia and infections so the surgeon made sure they waited until my bloods were ok and everything was as good as it could be. If you are having this as your first treatment with no chemotherapy you should be in a better starting point than me.

so far it has been a very positive experience and I continue to heal well and just keep going with the physio to help avoid lymphedema.

keep me posted and I'll update if I suddenly start getting new symptoms or side effects. Everyone is different but I have shared my own experience and that's all I can do. Please feel free to ask any questions you like I'm happy to share any info.

take care

Tingk

xx

p.s. Big baggy trousers and only front fastening clothes but not front fasten bras as they can catch on wounds. I didn't even wear anything other than hospital gowns until I came home as they're at your boob all the time checking so that's easier.

what an amazingly helpful post. I am so pleased you are doing so well.  I am having a double DIEP reconstruction sometime this year hopefully.  Meeting my plastic surgeon in early September, but just had a mastectomy so it will depend if all okay following that.  Hugs for your continued speedy recovery 

And good luck with your surgery

xxxx