Topic: Seeking DIEP recovery stories

Jan 25, 2021 10:23PM Whatjusthappened wrote:

Indahood, I'm so glad you are healing well from your surgery, and that you have had some help! I second what abigailj said about physical therapy. I've had to go through PT after my radiation treatments and after my DIEP, and it helped a lot to get scar tissue broken up and range of motion back. It also can take time for the nerve damage to improve, especially with everything you've gone through.

I didn't have immediate BMX to DIEP (I have the football-shaped flaps from my abdomen), but I also have the side boob issue. I've already had phase 2 and my PS did some lipo there to reduce it. It still bothers me though, and I think in my case the flaps are too wide and extend too far under my arms. They look ok in a bra to shape them, but I really don't want to always have to wear a bra (that was going to be my silver lining in all of this). I'm hoping that with massage the shape will improve, otherwise I am going to talk to my PS at my next follow-up to see what can be done to make them a bit "rounder" (I can identify with the banana analogy).

Jan 26, 2021 10:08PM Whatjusthappened wrote:

JRNJ, good luck with your surgery Friday! With all you've been going through it's no wonder that your BP is up a bit. I hope all goes well and that healing is quick and complication-free.

Jan 27, 2021 01:54PM indahood wrote:

JRNJ... Best of luck, Friday with your surgery. I have to say that even though I'm just a few weeks ahead of you, I am already happy with my decision. My body looks pretty good. It's great to have a flatt(ish) stomach (it's still swollen and misshapen) and I feel pretty well. Mostly off the pain killers. No pain but my daughter makes me stick to them because of the anti inflammatory effect. Don't be shy to keep up on the pain killers while in hospital. It aides your recovery by helping you feel well enough to get up and about.

Also, don't be shy to go at your own pace. The hospital will have a schedule of "things" they want you to do at certain points during your stay. Stick up for yourself if you don't feel ready. I did, day 2 they wanted me to take out my catheter, but going to the washroom was soooo painful and I happen to have to go several times a night. I refused and they were good about it but later told me at the time they were worried I'd be the kind of patient who didn't want to do the recovery work. Instead, I flew through recovery work because I had taken the time to rest rather than push it.

Those are my suggestions sister! ;-)

Good luck, I think it's a great surgery though you'll feel at first like you've been hit by a bus.

Laurie

Indahood

Jan 27, 2021 03:15PM Snowflake888 wrote:

wow, indahood. You look great. Someone will probably tell you that you can’t post photos, but I appreciate being able to see your great results. They look so natural.I did subpec implant reconstruction and have been left with shoulder pain and chest tightness, even driving a car is uncomfortable. We are of similar age, and I so wish I could get a diep flap reconstruction. So afraid of the blood thinner issue. After covid and my daughters wedding I will do something. You look great and I hope you will be pain free soon. God bless you all.

Jan 27, 2021 04:23PM - edited Jan 27, 2021 04:24PM by abigailj

Indahood, if you look this good now, not even 2 weeks out, you will look. amazing in a few months- swelling takes2 months at least to go down. I was 15 pounds heavier when I came home after the surgery than I was before it even though I'd eaten almost nothing the 5 days I was in hospital, as I said it took several weeks to subside. And the flat stomach is definitely my silver lining in all this. 😊 I would say it took 3 months for my body to totally'settle' into my new normal shape after the surgery so it should just keep getting better for you for some time to come

JRNJ - will be thinking of you and looking forward to hearing from you when you're up to posting after the surgery.

Jan 28, 2021 12:23AM indahood wrote:

Hi Sharon, I did have drains. They took them out on the last day before I left the hospital so... I had them for 8 days. Was super happy to get rid of them. Seems others keep their drains longer but maybe a different surgery?

My surgery was 14 hours under, drains and hospital recovery for 8 days. The first 3 days were coming down from the anesthetic high after such a long time under.

Good luck, It's a big decision but look at how many have gone before you. You'll do fine.

L.

indahood

For the rest of you, thanks for the compliments. I know I kinda really appreciated seeing people's pre and post op photos. So I shared mine here. I don't know if I'm allowed or not but honestly, after my week of everyone poking and prodding in the hospital, I lost all my modesty. lol

Onward and upward

L

Feb 9, 2021 04:51PM ppp2605 wrote:

Sand21: The CT angiogram is super simple - it's basically a CT scan with dye to map out where your blood vessels run - the scan itself only took ~5 minutes for me, with preparation, expect 30 minutes. No big deal. This is super important as it enables the surgeon to plan out the surgery and reduce surgery time. That said, I would look for a surgeon who can do the DIEP flap in less than 12 hours as the longer the surgery, the higher the risk of complications, and it also increases recovery time. My surgeon is extremely adamant about keeping surgery time down for the patient's safety, and my bilateral DIEP flap took 7 hours. After 2 nights in the hospital, I went home. I had 2 office visits after surgery, where he removed the drains.

I actually had 2 surgeries and heard that's pretty much the standard as, during the first surgery, they'll do the heavy lifting and focus on the survival of the donor fat from your tummy. The second surgery was 6 weeks later, took only 1.5 hours, and my surgeon did some fat grafting and improved the cosmetic outcome. For me, it was 2 surgeries plus 3 office visits total. The result is amazing - so worth it.

Feb 10, 2021 06:59AM Sand21 wrote:

thank you for the encouragement. I’m new to finding doctors ( wished I would have looked harder 12 years ago) so I found 2 with a microsurgery concentration at Cleveland clinic - any idea how I find out how many of these they do ? Do you just call up and ask before scheduling ?

Sorry to ask such rookie questions !

Feb 10, 2021 10:00AM - edited Feb 10, 2021 10:02AM by ppp2605

Hi Sand21,

piggybacking on sharon0706's advice, ask them

- How long surgery will take

- Success rate (this has to be >99%)

- Are they performing the surgery alone or as a team with another microsurgeon (this has also advantages in terms of surgery duration, but mine was the only microsurgeon, so if they highly optimized their technique, you'll be okay with one)

- Recovery from surgery. I was feeling really well after 10 days, and back to exercising after 6 weeks, adding abdominal exercises after 8 weeks

- Pain management after surgery: my surgeon followed the ERAS protocol ("Enhanced Recovery After Surgery") and is controlling pain at its source through intra-operative injection of Exparel into the surgical sites. I did not need any morphine after surgery.

- Ask them if you can talk to one of their patients who underwent DIEP flap. I asked this question but did not follow up on it. For me, it was sufficient to know he has references to share :)

Take your time with your decision. I needed a year to decide if I wanted to do this and who would be my choice for surgery.

Good luck!

Feb 14, 2021 12:20PM tacichon wrote:

I live alone and had Deip Flap 12-15-2020. I had a girls spend 3 nights.. I think you will be ok, it is just getting in and out of bed. I hear a recliner is the best but I did not have one. Just a large stuffed chair an ottoman. I found the drains to be the worst!! emptying them and recording how much drainage.. You are able to move around.. make sure you have lots of pillows to put under your legs!

YOU CAN DO It!!

Terri

Feb 15, 2021 02:53PM JRNJ wrote:

I hate being a Debby downer, but the last few weeks have been horrible. But I am feeling better now. I was in really bad shape for 2 weeks. A lot of pain, a lot of drugs, side effects from the drugs, horrible horrible constipation than horrible diarrhea. Than emotional trauma because I felt like the surgery was a disaster, I had two flat pancakes, one bigger than the other, really far apart and I looked like Frankenstein. The scars were not in places I expected based on pictures I had seen and not symmetrical. I have OCD so really wanted them to look identical with scars in same place. I had two Drs. working on me, each one did a side, is this normal? Once I stopped all drugs and got the drains out, I started feeling better and able to get out of bed. They are starting to look better as they heal and loosen up but I'm still not sure if I am happy or not. My scars look like big eyes. Like the flap is under my skin. I thought the flap scar goes under the breast. Dr. said I had a lot healthy skin left so they were not going to cut it out. And I didn't have a lot of stomach fat to work with. Was 5 feet 2 inches, 138 pounds. Is this normal for my scenario? Anyone else have scars that look like big eyes? Seems like most Drs. tell patents revision surgery is automatic, but mine just keeps saying lets wait and see. That makes me feel like he is not as experienced as others.

Indahood, Thanks for much for being brave and posting your pics. I saw them before they were removed. Looks like you had circle like scars, or was that nipple reconstruction?

lrobbins17, one year sounds excessive. I was told 6 months. I had very little damage from radiation.

Feb 15, 2021 04:32PM - edited Feb 15, 2021 04:34PM by abigailj

Hi lrobbins - I recommend starting a thread with a subject like “Need SoCal recommendation for Kaiser network DIEP flap surgeon" - that might help more women who can advise on that specificasee it.

JRNJ - welcome back, so sorry to hear you've had such a rough time. I had 20 pounds more on my 5'2" body when I had the surgery and it was skin sparing immediate DIEP at same time asmy BMX so different experience. However although I can't say I was unhappy with the initial appearance I wasn't thrilled. It took the first revision and then time for things to settle before I got to “definitely happy" and I've been working on the scar tissue with.a wonderful PT so feeling a lot more comfortable in my changed body. So as whatjusthappened said, please be patient and give it some time. And also do start massaging to prevent scar tissue hardening too much and get good flexibility back when safe to do so (probably 2 months but PS will advise for your specific circumstances), use silicone gel or strips if you want to as well to fade the scars. Hoping you will be happier with results in the coming weeks!

Abigail

Feb 16, 2021 06:27PM - edited Feb 16, 2021 06:40PM by JRNJ

Thanks for the responses. They are starting to look better and loosen up, and they look better in a sports bra with padded cups. I'm not sure if I am supposed to be wearing one yet. It's been 2.5 weeks. My Dr. hasn't said anything about doing a revision surgery and when I ask he just says let's wait and see. I don't get that when you all have had multiple "tweeks". My abdominal scar is a little crooked, but overall ok.

Feb 18, 2021 02:06PM indahood wrote:

Hello all, just a response to JRNJ. Yes I have eyes on my boobs too which I also found surprising. Most pre and post pictures showed scars coming from the 6 oclock position but mine are from 9 and 3 o'clock. So more visual scaring than I anticipated. As far as symmetry, they are pretty good but not perfect. One hangs lower than the other. When I pointed it out to my PS, he was surprised. But here's what I think might be happening. My breast pre surgery were not symmetrical either but that's I had already had a lumpectomy a few years before this surgery. Because I had skin sparing double mastectomy with rebuild at the same time, the non lumpectomy breast, had more skin left so evidently it now hangs lower than the lumpectomy breast. (my lumpectomy was at 5 o'clock position) it's pretty close though. I just keep telling myself that this is the result of a cancer operation and not a 20,000 boob job. That helps me keep any disappointment at bay. I'm only 5 weeks out and I've been told to wait it out. I won't really know what they will look like until around 6 months. So, I wait.

Like you, my PS doesn't talk about revision surgeries. I figured that was because I was in Canada and our surgeries are paid through our National Health Care system so... probably not as much as the PS in the private system will get paid through private insurers. And before surgery, when I asked about liposuction to make my breasts not look strange with extra fat under my arms, my PS said he would do it and not to worry because he never charges his cancer patients. That indicated to me that, the cosmetic part was not covered. I knew that from a long time ago when my daughter had to pay extra for lipo when she had her reduction. I don't know the US system of health care but...you might want to look into what your particular insurance company is willing to pay. Maybe only the first surgery for health reasons.

No doubt though, when I have my new nipples tattooed on, I will have lipo under both arms. I have way too much fat under my arms. Still feel like I'm walking around with books under my armpits. This issue, I have been told is because when they repair the skin from the micro surgery under the arms, They inevitably pull skin forward bringing with it the back fat. Boooo. I was going to try to loose 10 lbs before surgery but before was during xmas and such a difficult time to deny oneself.

Anyway, I think the most positive aspects of my surgery are:

1. I now have a much less chance of having a recurrance of Breast Cancer. In fact my chances are less that your average woman when before my chances were 3X that of a non cancer woman.

2. My stomach is flatter than it's been in 20 odd years.

I keep my focus on these positives and prey that once the swelling is gone I will be happier with the results than I currently am.

Cheers to all my Diep and Trans flap sisters.

L

Feb 19, 2021 09:51AM Whatjusthappened wrote:

Sand21, if you are worried about a long surgery, ask if your surgeon works with another during the surgery. With two surgeons working, my surgery was less than 4 hours.

Indahood, here in US, the cosmetic portion is covered. I had liposuction under my arms as well as lowering the abdominal scar during my last revision. I also had a lift on one side. I've seen my PS twice since then. The first time he didn't want to talk about any more revisions (wait and see), but the second time he said he can fix those things that are still bothering me. I just need to wait a few more months, and then we'll make a plan. I think the surgeons don't want to say anything until they see how things heal.

JRNJ, you have every right to feel emotional right now! You've been through so much, and the psychological toll of it all is high. And all this COVID stuff certainly doesn't help. My PS said that flap rejection usually occurs in the first few days following surgery. That being said, portions of tissue can be starved of oxygen and die (fat necrosis), so be careful about wearing very constrictive clothing until your PS gives you the OK to do so. I had fat necrosis on both sides, and my PS cut it out during my revision. I remember opening up a stich and bleeding after wearing one of my snugger sports bras. After that I stuck with my loose coobie-type bras. It wasn't very flattering, so I just wore loose shirts.

It is my understanding that the PS will leave more of the flap showing initially so they can monitor the flap more easily. Then in a subsequent surgery they can "bury" the flap so that you have smaller "eyes". Mine are not this way since I never had TE's, but I've seen pictures of this on the DIEP Facebook page. If you haven't checked out that group, it would be worth looking into, as many women post before and after pictures of their revisions. It might help to see what's possible.

Wishing you all a speedy recovery and emotional healing.