DIEP 2013

MartyJ

Cherrie - I have had frozen shoulder after MX.  I did have somewhat limited ROM on one side following DIEP, but have resolved it with PT.  If it is bilateral, then it could be a nerve in the neck.  I know you are tired of this, but it couldn't hurt to have it looked at.  You can take Tylenol and that might help a bit.  Sorry you have to face one more thing..

marieann1020

Hi Tracy,

thank you for your post, it is very helpful

I'm having my double Diep surgery next Thurs Sept 5, and I too will be alone,

my husband will take two days off, but he needs to go back to work

how are you feeling now?

are you able to get around?

when will you return to work?

sorry for so many questions..:(

hugs

Anne

Tracy516

Anne: I'm 17 days out. I and down to 2 pain meds a day and some Tylenol. I got around slowly and only if I needed to pee;) they want you to move around but don't over do it.

I'm not gonna lie, there is pain and itches and general uncomfortableness. Some handle it better then others. My incisions are in great shape. My drains came out 11 days later.

Ask away. I can only tell you my view!

Tracy516

Anne: Also I think you can't go to work until your second visit to plastic surgeon. 4-6 weeks.. I stay at home.:)

goldie4040

Cherrie, it doesn't have to be frozen shoulder.  For some reason I am prone to bursitis.  Got it the first time when I was only 25, and have had it several times since.  It hurts like fury, and you feel like you can't move your shoulder at all.  The treatment is simple, and if in two days it's not better than call a doc.  Use a heating pad for about 20 minutes every hour, or so.  If heat makes it feel better it is usually bursitis. Take advil, or aleve 2 times a day, and keep shoulder as still as possible.  The bursar is a sac of fluid that lubricates your shoulder, and when it gets imflammed your shoulder gets more upset the more you use it because it has no lubrication.  If your symptoms are not better, after the holiday weekend, then call your doc.  I hope it's just bursitis.  It's so treatable.

la2shea

Hi Ladies. I've been creeping around on your page ever since I was faced in making the decision to have the DIEP vs. implants - back in April/May when I was completing chemo. I only just started an account here within the last week. I was looking for a good time to "jump in" but have found, just like getting cancer, there is no good time, so here I am.



I don't even know where to start. Most days I wish I would have never opted for the DIEP, but then I tell myself, this is reconstruction - not construction. I was quite naive in thinking after all that I had been through, and all within a 9 month period - DX - Bi MX - Port surgery - TAC chemo - Tamoxifen - then DIEP. I thought I would have the breasts I always wanted. A cup size larger, an uplift, a smaller nipple, a firmer tummy. I was so wrong!!! I could get into precise details, and there are many, but my main challenge now are the abdominal wound issues I am facing.



I know there are some women on this forum facing wound issues, so I am hoping I can possibly help relate, and find some support as well. Since my DIEP surgery on June 10th, my abdominal incisions have opened twice, and not just small openings. They were so bad on my 2nd post op visit, 12 days after surgery, my PS had to cut off all of the sutures. I was on wet to dry dressings so they could start to heal inside out, then VAC (vacumn assisted closure) for three weeks with a home nurse 3 days a week. I had another surgery on August 2 to add nipples, fine tune my belly button, remove my port and close my abdominal incisions back up. The incisions began to open again up as soon as 3 days after the surgery. They weren't bad so we opted to begin the wet to dry again. But they started to fail again slowly, and even when my PS was seeing me every Tuesday and Thursday to debried and monitor. Then, it was back on the VAC. Now my wounds are tunneling, which is bad. My PS wants to roll me back into the OR and see exactly what is going on and heal with a drain. I don't really understand completely. There are soooo many factors involved to accept or deny this surgery. To have to re-recover, and re-recover, and recover once again. In the meantime, my nurse and I are working to avoid the surgery with the VAC dressings. I am crossing my fingers for some great progress (since Friday) when she comes in the morning.



I am sure some of this may sound foreign to you, and some may know exactly what I am referring to. Ask any questions. I am so frustrated, angry and so scared, but holding on to faith with all that I am. I just needed to let it out with a group who understands. I apologize for just throwing it all out there with my introduction and hopeful acceptance into your group.



Bluebird, if you are out there reading, I know we haven't met, but I am so saddened to hear of your loss. Just from reading entries I can tell you there are a lot of ladies here with big hearts who love you dearly and are thinking of you. Just outside looking in maybe knowing that the power of love in numbers will help you heal, with a smile or even a tear of joy.



Thank you all so much for listening!!!

Laura from Dallas (Grapevine)

kuka21174923

Goldie, when I got bursitis 3 months ago my doctor told me to ice it 2-3 times a day. I also got a shot if cortisone that hurt like hell!! But after a couple days from the shot I was as good as new😄

Ok, I've been trying to not say anything here. I always try to be positive but this is bothering me. I thought after doing stage 2 I was going to love my new goobs, but I don't. I don't know how to explaine it, but I think I don't like the shape of it where the fold of the breast is. It doesn't fold enough. I don't know if there's anything my ps would be able to do or when. I'm so tired of all this surgery. But I don't want to live with flat boobs either!

I was even thinking about what Goldie said and putting an implant in. It would be very small, just to help with the shape. I just want to be over!!! I don't think any of my fat grafting took at all. But I know ps will want to wait 12 weeks to see how they settle.

Ok, done now. Sorry for the little rant😁

goldie4040

La2shea,

I am in the DFW area also.  Where did you have your surgery?  I am so sorry for everything you are going through.  It sounds miserable. I am hoping you, and your nurse can get things improved together. 

It just doesn't make sense to me why some women have no problems with this surgery, and other's have terrible complications. 

We are here for you too, just like we are for Bluebird, or anybody else that needs to vent, talk, seek advise, etc.  Join us.  We would love to help you get through this.  There are a couple of other ladies having similar problems.  They would love to talk to you. Also, there are some that have gotten through wound issues, and can reinforce that you will too.

goldie4040

Kuka, I bet you the foobs have to settle a bit. I wouldn't doubt they are a little swollen still.  I am not sure what you are saying.  Do you feel they are not dropping, and you have no fold under the breast?

Goodie

kuka & sbe and other stage 2ers - where do they take the fat grafting?  Is that what hurts the most?  My stage 2 is Wednesday and I'm getting a bit nervous.  

klanders

Hi Goodie, my stage 2 is also on Wednesday. We fly down to NOLA today. I have the same questions. It's hard not having any clue as to what they are going to do to me!

mrtw43

La2shea: I am sorry to hear about your issues. I have recently joined the group and have found it really supportive and helpful. Good luck to you I hope you hear good news soon.



Goodie and klanders: i hope everything goes as planned for both of you. I am a few months from my stage 2 surgery, but I am looking forward to the " fine tuning" (my dr words). Please keep us posted. Goodie, If you don't mind sharing where are you having your proceedure? I was planning on having mine in Annapolis and I notice you are also in Md.



For the last week or so, I have been noticing in the morning just as I wake up it feels like my chest bones are sore. It goes away almost immediately when I get up. It's not terribly uncomfortable, but definitely noticeable. Has any else experienced this and does it go away eventually?

MartyJ

La2shea - I know how difficult it is to face yet another surgery, but if there is tunneling and the PS says surgery is the best way to figure out what it going on you should do it.  Did you have drains with this last procedure?  If you didn't or if they were removed too early for your body then that can create further challenges.  You can get through this as in a few years it will all be a blip on your radar.  

Goodie & Kristen - Stage 2 pain from lipo is different from Stage 1.  They use lipo to get the fat for the fat grafting.  There is a lot of really intense bruising, but that is gone in 2 weeks.  I am now 3 weeks out from 2b- inner thigh lipo and am pain free 95% of the time.   Stage 2a involved flank lipo, but was more intense surgery as my ab incision was lowered and breasts repositioned.  I also had 4 drains (breast came out in a few days, abdomin took 11 days).  I only took the big painkillers for a few days.  The compression garment really helps support the lipo'd areas and minimizes the pain.

Kuka - I so wish I had something to say to help you with the look of the boobs.  I think that is the hardest part of this surgery - when you go in with your original equipment and awaken with something different.  I can't imagine doing that.  I do think that time will help some with the droop over the fold.  You only had a few months between your 1st and 2nd surgery.  Maybe try to ignore them for several months before making any decisions.  They may look different then.  Take a photo of where you are now to compare to a few months from now.  It might change your point of view.

lahela

"Take a photo of where you are now to compare to a few months from now."

Marty, this is such good advice! I'm going to start taking weekly photos to track my healing because I think that will help me get over the "when the heck am I going to get better?!" feelings that hit me when I undress, and also help me decide what I want to do next, if anything.

MartyJ

Lahela, glad I could help.  Because my doctor is in another state much of the time, we communicate with photos.  I can look back to my photos for the initial telephone consult and see where I began.  It really does help me keep my head on straight.

For my next surgery, I have to decide if I want nipples or just 3D tatoos.  I haven't had nipples in so very many years, so I have ordered Rub-on Nipples (fake tatoos) to try it out.  I can't even imagine what it will look like or how I will react.  I am hoping they will be the icing on the cake.

christina0001

goldie I did get mildly nauseas from the effexor for the first 1-2 weeks but it was no where near the level of yuck you had from the cymbalta! It was mild and occasional in the evening; taking it with dinner helped a lot. I'd say within 10-14 days it was totally gone. Otherwise, no side effects for me.

debdylan, sorry to hear about the infection. That is very scary! Try to not panic and have confidence in your doctor. You're not going to see immediate improvement from the antibiotic, but it will start working behind the scenes immediately. (If you are like me and get lady-problems from antibiotics sometimes, have some yogurt with breakfast too.) I agree that if it is getting visibly worse you may want to call again or go to the ER, but give the antibiotic a chance to work. Antibiotics are antibiotics whether they are through a pill or an IV. Keep track of your temperature and taking pictures is a great idea to truly judge if it is getting worse. Would a second opinion from another oncologist help you make a choice regarding chemo? I fell into a grey area regarding radiation, and a second opinion from another radiation oncologist was a huge help to me, in making my decision. Sometimes feels like cancer is just a series of rotten choices to make...

 SheChirple, thanks for the reality check regarding healing. It is hard to know what is okay and it helps to hear other's situations. I have a couple of very superficial areas on my belly incision and I don't worry about those, but this one area is just so much slower. But it is probably hard for the underside of a breast to heal. I did not bandage it for a day and a half and went braless for that time, and it seems a little better this morning. I have to go to work today though so the bandage and the bra went back on this morning.

 aspinner/Kat, the port removal is a personal choice. If your PS is willing to do an IV that's great, gives you a clear choice. I got rid of my port ASAP after finishing treatment - I hated that thing! But there are other women here who prefer it and feel it is more comfortable than an IV. So it's whatever you prefer. The process of taking it out is a very quick, outpatient procedure; it's nothing like getting it put in.

Cstrong/Colleen - welcome! September 10 is just around the corner! I hope the time goes smoothly for you without undue worries.

 la2shea/Laura, welcome to you as well. Your story is a hard one to read, what we all fear before surgery and as we heal from it. I know I had no idea how hard DIEP was before I went into it despite much research here, in books and talking with doctors. I hope that things turn around for you. Don't be shy, please keep us posted on how you are doing. I know I continue to learn so much from hearing other women's stories and experiences. And we are here for you too.

I'm going to be a little late to work from reading but I have to read at least twice a day to keep up with everyone! LOL That's okay, gives me an excuse to finish my morning tea. I hope everyone has a good day; those who are recovering are comfortable and those who are waiting, are peaceful inside.

kuka21174923

Goodie, my stage 2 lasted 5 hours because of all I did. I lowered tummy incision, lifted the foobs again, lipo if love handles and tummy, fat grafting, lipo of chin and nipple reconstruction. I don't think the lipo part hurt at all. The only pain I had was in the tummy incision. I walked hunched over for a couple of days. I was bruised around my love handles, but didn't really have pain in the lipo areas.

Marty, I've been taking pictures and I'm hoping that with time everything will look better. But the waiting game is so hard! I like what you're doing about the nipples. I will tell you to discuss with your ps where you will like to have them positioned. I think mine are too high, but my DH doesn't think so. I was so used to them looking down that now is hard to see them where they're supposed to be.

Goldie, on one foob it looks like there's almost no fold. I don't know if I have to be bigger to accomplish this or not. I really don't want to be bigger than a C. I also feel that some of the fat grafting has moved towards the side if my torso. So I def. want to have lipo on the sides. I'm just so tired if surgery!!!!

sherry35

La2shea- hello and welcome. Sorry for the troubles you are having! I am in your boat, only mine started a little different. I lost my drains early and my home nurse was a little incompetent and didn't see any signs of infected seroma. I was opened up to be cleaned out and woke up with a vac. Since going home I've been on wet to dry traditional dressings then back on vac. Now I'm having allergic reaction to tape after 3 weeks! So, I may have to go back to traditional dressings. My wound is 24cm long. I don't see my PS again until the 12 th. She doesn't seem concerned.

Half the time I don't know what's going on or what to do. I just go along with what I'm being told because I'm scared! I don't understand why they can't just sew me back up. My surgery was July 29th and I'm tired of not getting better. There are things I'd like to be doing but I can't! I know I'm depressed but already have meds for that.

The ladies on this board are extremely knowledgeable, understanding, welcoming, and loving. They are very supportive. I hope just knowing you are not alone helps. I know it helped me reading your post this morning.

Sherry

hrf

I have to echo what others have said. This is a difficult surgery and some people have complications. It is the support and advice of the women here that is getting me through this.

mammalou

La2shea....I, too, have an open abdominal wound. My surgery was on June 26th and my open wound got steadily worse until the last week. I finally see some improvement. I finally see the bottom covered in granulation tissue and it is getting less deep. I had some tunneling and still have a small spot that looks like it might make a tunnel. I think that Cleaning out the dead tissue and that yellowish fibrous tissue helps it to start to heal. I asked my PS to sew it up, but he wouldn't. He told me that in his experience it just reopens and makes matters worse. So, I have been doing the wet to dry packing 3 times a day.



I have had many down days with all of this. An open wound combined with the normal diep recovery problems of pain, not being able to walk straight, wearing a binder 24/7, being 100 degrees outside all the time, hot flashes, etc ., have challenged my usually strong and positive disposition.



I wish someone had told me when this whole process started that it is a very long process! Last summer when I exchanged my TE for an implant I thought I would be done and I could get new bras etc. then the implant didn't work. I thought after this diep I would be good to go at last. Now, wound issues and my breasts are still lopsided, so the PS wants to add a small implant. I never expected to be going back to that and I'm still trying to wrap my head around it. Honestly, at this point, I don't want to tell anyone what is next because I feel like a fool doing all of this to myself for a boob. I know I want it fixed but I know that other people just don't get it. I think I will just have secret surgeries. Lol



Hang in there and know you are not alone. I don't like to come here and be a downer but I'm always willing listen and you can PM if you like.

Janet_M

Mammalou - I don't think you're a downer at all. Just a regular gal in the middle of a long & challenging recovery. 

I have a comment about the 'long process'. Now that I know I need 'tweaking' Ill be facing another surgery in the new year. And at 12 weeks I'm still getting back my energy and range of motion.

I think back to my pre-surgery year and to all the conversations I had with my docs, and they told me in a millions ways that it was a long process - I just didn't listen! I was pretty focused on having the surgery so I just heard what I wanted to. I think I just shut my brain off when we talked about possible dog-ears and such. 'Very low chance of recurrence' & 'three month recovery' & 'summer off" was what I chose to hear. And I must confess, hearing 'flat stomach' was pretty tantalizing too. 

But I have no regrets. And I've had a pretty calm and happy summer, even without swimming or spending time in the sun. Last night I was out with a couple of girlfriends having a few glasses of wine and I was answering questions about my body and I was overwhelmed again by how amazing this surgery actually is. 

And I hope that all of you facing challenges are progressing, and finding some calmness today.

2timer

Just checking in.

I had my DIEP surgery on the 28th and just got out yesterday which is what I was told so no suprises there.  My surgery went really well and I'm healing well.  My surgeon really seemed pleased saying that things couldn't have gone better.  The first night was rough with no water and me breathing through my mouth.  I was mostly preocuppied with that and not the surgery itself.  They took 6 lymph nodes and all of them tested negative -- I don't know if they were sentinel nodes or not but I'm really happy about that.  The hospital was great and I think I was treated very well there.

I'm at home now and trying to deal with the tightness of my stomach and breasts but I am getting around and the pain medication helps a LOT.  Still haven't looked at my new frankenboobs yet but I'm told they are very symetrical. The drains are a really issue and I'm dealing with them as best I can.   I am grateful to have come through such a complicated surgery so well and I hope things continue like this.  I'm not happy though;  don't know why but I guess I'm still pissed that I have to deal with any of this.  But I have cancer and it had to be removed and it has been removed and it's on to the next step.  I have two followups next week where I get drains removed and my pathology report.  Hopefully those will go well too.  Anyway, just wanted to touch base.

Suzanne

sbelizabeth

Good morning, gloobsters, and for those of the US persuasion, Happy Labor Day!  

Deb, I think I'm getting a picture of what you're referring to with the condition of your flap.  Think of a time when you skinned your knee badly.  There was icky greenish drainage (which isn't pus, it's just wound juice) and dark brown scabby stuff.  When it gradually healed, you were left with a reddish area that eventually faded.  This might be what's going on with your flap.  The areas that didn't get great blood supply with the initial transplant are acting like a deep abrasion, with dark scabby areas, that are healing up from underneath.  Does this sound like what you're dealing with?

Marty, funny you should mention the rub-on nipples; I was looking at the website just yesterday and thinking about ordering some for a dress-rehearsal.  It's either that or a red sharpie marker.  I'm waffling between fipples and just tattoos--I spent most of my life dimming my high beams, and I don't want to create them again.  

Bike ride yesterday evening!  We came across a beautiful baby buzzy legless reptile lying on the trail.  Last week, we saw two bobcats running around.  Such blessings.

For those who are struggling with wound healing issues, you are in the right place for support, questions, and friendship.  I just don't know why some of us sail through it and some have to deal with huge issues, but we're in your pockets for whatever help we can provide.

sbelizabeth

2timer--

"But I have cancer and it had to be removed and it has been removed and it's on to the next step."

Yes, indeed.  But you HAD cancer.  It's gone, gone, gone, and you're moving on to the next steps of healing.  Good for you!

sweetpickle

Im with you Janet, I greatly underestimated the time to heal and recover.



Im back to most of my presurgery activities and still hurt with every step I take, its just a managabke pain now that I can live with. My nerves are still regenerating and my dog ears still itch and get prickly when its hot. My stomch isnt as numb as it was which is awesome but it is sore all of the time. Now granted I am about fifty pounds overweight which Im sure adds to my discomfort and problems but I wonder sometimes if I will ever get up off the couch and not hurt.



Regardless of all this, I still feel that it was worth it. I like that at least in clothes, I can feel like a girl. :-)

sbelizabeth

Criminy, one more--

Janet, your perspective is spot-on.

When I FIRST was told I needed a mx and decided I'd do recon, I was looking at surgery two weeks before my son graduated from med school in Michigan.  I happily planned for a double mx with DIEP recon at the same time, with plans to fly from California to Michigan two weeks later for his graduation.  Holy cow, was I a doofus.  Even with no complications to speak of, this has been a long, long rodeo.

Anonymous

Good morning, ladies! I have been keeping up but not posting. Vacation, although short, was very, very good and much needed. We are unpacking and doing laundry, etc, but will get a bike ride in, and a cookout with the neighbors and school starts tomorrow! I have a senior and an eighth grader!



My OT said I could run....finally! I am 15-16 weeks out. But she wants me to GO SLOW!!! I am (since chemo) a notoriously SLOW and poor healer, like so many here, but have done pretty well overall this time. So, it's run 30 seconds, walk 90....run 30, walk 90...but it's a start!!! I have gained weight since diep so I am anxious to get it off!!!



My heart goes out to those struggling with open wounds and more than what they expected. Hugs!



Has anyone heard from Robin?



My noob is filling with scar tissue:( it's become heavier and heavier. I know it can likely be removed, but it is uncomfortable and is pulling my shoulder forward. It is so large...I cannot wait for the next surgery to debulk! I feel like I look ridiculous!



Find a piece of happiness and peace, today,friends, no matter how small, and hold it dear.



Peace, flappers!

MartyJ

Deb - don't worry about your dog ears.  They are definitely taken care of later on.  Each PS has their own way of dealing with it depending on your body.  Some gals have some lipo and that does the trick.  My doc ended up extending my incision about 1-1/2" on each side.  Because she had to put in drains again because of the abdominal work, she had these drains coming out about an 1" behind the end of the incision.  Because my initial reconstruction happened a great many years ago, I had little ears at the end of my breast incisions (my incisions went from the cleavage to the outer edge of the underarm).  The BS left them for the first PS to use for recon, but he didn't.  My wonderful DIEP PS had to extend the incisions to excise the extra tissue.  Although I would have preferred not to have them extend around so far to my back, there is a smoother line in clothes.

Recovery time from DIEP - it is kind of funny to read through the threads.  Each of us is warned often that recovery from this surgery is extensive.  That there are several weeks (6 or so) at the beginning, but that healing lasts for months and that there are secondary procedures.  Same stuff our docs tell us.  But most of us choose to ignore those warnings totally.  It is the superwoman complex.  We just know that we are going to bounce back quickly.  What happened to that other woman was not going to happen to us.  We are bulletproof; invincible.   Guess what - the cosmos or karma or our higher power has other ideas for us.  Woman plans and God laughs!  But it will end and then in a few years you will look back on this little spec of time and think - that wasn't so bad and I am so much better for it.  Keep smiling girls!

Janet_M

DebDylan - 

Exactly. My ears are kind of pointy like the corners of a pillow. Definately not a dog.  When I first heard of 'dog ears' I thought of my dog which is a basset hound and  I was too freaked out to get clarification. But now my PS just says 'we can get rid of those' and I left it at that.

sbelizeth - love that you call this a 'rodeo'. I'm going to use that from now one. Sounds way more fun

By the way Deb, my ears have softened over the last few weeks.

Tracy516

Group Hugs to all today!! We need it!



2timer - my surgery was 8/15 and I think my boobs ( I call them that because I have all my D skin minus nipples) look great if not a little bruised. My stomach has an inch long spot that needs care. BUT I agree I'm mad sometimes that I needed this.. I will get over it I think when the pain is all gone!!;)



Sitting around today because I did some activity this weekend and last night I paid for it with pain in both breast;( extra meds !!!!



Getting my 6 year old ready for school on Wednesday. He has mild Autism Spectrum Disorder. So every new year brings its challenges! So my time is almost over. Lol except when stage 2 happens! I may wait til Christmas! Nice gift!



Have a healing day ladies!