DIEP 2015

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  • cfm123
    cfm123 Member Posts: 9
    edited June 2015

    So, I have something called "the Ken Doll effect". Has anyone else experienced the same? It's when fluid collects in the pubic area. Think water balloon meets codpiece. I have googled and found some old threads about it online, but no helpful info about how to get rid of it. I'm going to the beach in 3 weeks and don't want to look like I'm wearing an athletic supporter cup under my bathing suit. Does anyone have any advise or experience? Or does anyone perhaps know what the medical terminology for this condition is? It seems pretty common in DIEP and tummy tuck. Thanks for any help...

  • jbdayton
    jbdayton Member Posts: 700
    edited June 2015

    It is called the mons area or the mons pubis area. It can either be fat or fluid. Mine was adjusted in Phase 2 just 10 days ago. I do not see much difference yet but also had scar revision so everything below the belly button is still swollen.

    I got a swim suit with a little skirt to hide the area. I have no other suggestions at this point. I don't know if we can eventually exercise it off or not. Someone told me bike riding would help.

  • LAstar
    LAstar Member Posts: 1,574
    edited June 2015

    My Ken Doll went away after a couple of months, thank goodness!

  • jlstacey
    jlstacey Member Posts: 277
    edited June 2015

    oh my! This is something I've never heard about before with DIEP flap! Is it pretty common? I really don't like the sound of it!!

  • cloudsinmycoffee
    cloudsinmycoffee Member Posts: 10
    edited June 2015

    Beccanana, I hope all went well with your daughter's surgery. Keep us posted when you can.


    My gosh, GraceB1, I almost cried reading what you had to go through. I sure hope it goes fantastically well for you from here on out.


    Thank you, Alberta. I definitely plan to ask my surgeon why I have this lump on the side of my breast and why my breast feels so hard when I am lying on my back.

  • Martie1228
    Martie1228 Member Posts: 73
    edited June 2015

    A week left before surgery (bilateral DIEP). Looking forward to it, but the reality of and questions regarding surgery/recovery are swarming my mind!!! Thank you for all the helpful information!

    Cfm: how do you arrange those pillows?

    Will get shower chair, but what about washing hair since you can't raise arms above shoulders?

    Should you get an abdominal binder before surgery?

    Thanks!!! Nervous and excited!!! A little worried because my sister is going to help (as is my husband) and she keeps telling me how lucky I am to be getting "liposuction"!

  • LAstar
    LAstar Member Posts: 1,574
    edited June 2015

    Clouds, ask your PS about scar tissue necrosis. Sometimes a section of tissue does not get adequate blood supply, although this is rare with DIEP. After my SGAP, I had swelling along the scar line that was firm and responded to light massage but necrosis in another area that felt like a sore plum and did not soften. I eventually had to have it removed. Also, after Stage I the edge around the flap is really obvious and firm. This is taken care of at Stage 2 with fat grafting.

    Martie, I was able to raise my arms about half-way and lower my head a bit to wash my own hair. My surgeons always encouraged it. I created a little nest of pillows in my bed that worked for me. I had 3 or 4 behind my back that kept me elevated enough that post-surgical swelling didn't bother me and getting out of bed was easier. I had pillows under each arm and a pillow under my knees. You will probably wake up with the binder on. Tell your sister this isn't exactly a trip to the spa! I'm sure she's just trying to focus on the positive, but breast reconstruction is a lot more complicated than breast augmentation and a little lipo. Are you getting lipo at Stage 1? Usually Stage 1 is all about moving the flaps and Stage 2 is more of the finessing.

  • WalleGator
    WalleGator Member Posts: 102
    edited June 2015

    clouds in my coffee - i was going to ask the same thing about the scar tissue! So glad you did. Mine sounds like it's in the same place. Left breast, inside corner. That spot also took the longest to heal. I assume it's scar tissue too and don't know if it can be removed easily. It's hard as a rock and about as big as a couple marbles. However my new boobs do feel soft everywhere else.I heard you had to rub scar tissue, too, but I've noticed not difference either.

  • Morwenna
    Morwenna Member Posts: 1,063
    edited June 2015

    The "not raising your arms" thing means don't raise your ELBOWS HIGHER THAN YOUR SHOULDERS. This is to avoid pulling on the joined up blood vessels, (anastomosis), and normally applies for the first three weeks.

    You can lower your head some, and easily get your hands to your head without moving your upper arms too much....... but it is nice to have someone to wash your hair for you! :)

  • cloudsinmycoffee
    cloudsinmycoffee Member Posts: 10
    edited June 2015

    Thank you, LAstar, I think you're right about that lump, and I expect it will just have to be removed at the next surgery in July. I've been massaging the area faithfully. It's no softer and now is just sore. I'm really surprised to read so many references to not raising one's arms/elbows, etc. No one ever told me I shouldn't raise them, and I had no binders or dressings. However, I have a shower head attachment and would stand in my shower with my head down and with me bent slightly at the waist to keep the shampoo from running down my face. My shower has 2 built-in seats and a towel rack on the inside shower door and opposite wall. I never sat down but placed the soap and shampoo, etc. on the seat in front of me facing the shower attachment, placed the bulbs of the drains in my hips on the seat behind me, and used two of those shower gloves I bought at Dollar Tree. I'd place each of the bulbs from the drains in my chest in a glove and then tied two of the fingers of each glove around the tower rack. Hope you can picture all of that! That way I could easily shower by myself using the shower head on the hose and not have to move around much, and I didn't have to worry about the drains just hanging down without any support.

  • cloudsinmycoffee
    cloudsinmycoffee Member Posts: 10
    edited June 2015

    One thing my surgeon impressed upon me, which I do keep having to remind myself frequently, is that this is a process, that it will involve two and frequently even more surgeries before we can say, okay, this is it; it's done. It's hard for me to be patient. I had the mastectomy February 4, 2013, and I just want to be finished with all the surgeries and feel I can concentrate on something else, with cancer and medical issues as far back in my mind as I can get them.

  • Martie1228
    Martie1228 Member Posts: 73
    edited June 2015

    LAStar: Thanks! No - just Stage 1. I'm getting pretty nervous about the surgery, but I'm sure that's normal. ;)

  • debiann
    debiann Member Posts: 1,200
    edited June 2015

    Good luck to those getting ready for surgery. I found the shower chair to be very useful, but I only needed it for a short time. Not worth spending a lot of money on if you don't already have access to one, imo. Plan ahead for how you are going to deal with your drains when in the shower. I wore a little pouch around my neck and put the drains in that. Around the house I wore a snap front house coat with large pockets. I wore it inside out and placed the drains in the pockets. Drains suck, no two ways about that. They are a necessary evil. You need to strip the drains throughout the day and track how much fluid comes out. I kept notebook and a jar with a lid near my bed to empty them into and the DH would then empty the jar for me.

    I found sleeping in my bed more comfortable than the recliner. I had a bunch of different size pillows to make a nest with and I would re-adjust the pillows to support whatever felt uncomfortable. Sometimes I needed pillows under my knees, other times behind my back to try to shift my weight to side a little. It took a while till I could roll onto my side. The odd part was I found flat on my back with my arms extended straight out to the sides to be the most comfortable. I took up the whole bed and the DH was sent to the spare room for months, lol.

    I was given a breast binder and a tummy binder in the hospital. I was allowed to switch to a tight sports bra and spandex tummy garment after my two week checkup. I wasn't told not to raise my arms, but I couldn't do it anyway. The first time my DH left me alone for an hour I felt so helpless I cried. I was so thirsty and couldn't reach up to get a glass or lift the juice from the fridge. If your going to be alone, prepare your house in advance, putting things easily within your reach.

    My PS told me to put neosporin on the incisions and I truly believe this helped them heal quickly. I know there is some controversy to this, some are told to only use bactrim and others aren't told to use anything. My scarring was minimal. After the incisions healed I used Mederma too. I went through a couple boxes of large gauze pads too. I'd place them over the incisions to absorb the drainage and scabby stuff. It helped to keep my bra clean.

    This certainly is a process. I just had my stage 2 (8 months after stage one because I wanted to finish herceptin first). I was so unprepared for my reaction to the second surgery. I had a lift/reduction to both sides, plus the dog ears fixed and my port removed. It was SO difficult to see my body all cut up again I cried for two days! That was almost three weeks ago. Feeling much better now that everything is healing up again.

    Good luck to everyone!

  • Trvler
    Trvler Member Posts: 3,159
    edited June 2015

    Debiann: I am glad you are doing well.

  • lynn85
    lynn85 Member Posts: 16
    edited June 2015

    I have 2 questions as I get closer to my BMX and hopeful DIEP on June 29th.

    I'm scheduled for a CTA PELVIS (i thought PS said CT scan but my appointment says CTA pelvis). I think it's so he can check out my perforators and find out how many he has to take. And also to see he can do a pure DIEP without taking any muscle. I know he explained it at my last appointment but by the time I left all of his words were mixed up in my poor head!

    anyway, did anyone else have to have one of these and know more about what it's for?

    And also, he mentioned that because I am overweight and have 'pudge' above my belly button, that I will likely end up with a muffin top where my upper abdominal fat hangs over my tighter lower abdomin and that we might have to fix it later.

    Has anyone experienced that?

    Thanks so much for any wisdom or just 'words of warning'!


    Lynn

  • mefromcc
    mefromcc Member Posts: 188
    edited June 2015

    I have muffin top pudge and my PS is going to use it for liposuction with fat grafting for my foob defects.

  • lynn85
    lynn85 Member Posts: 16
    edited June 2015

    mefromcc - Thanks for responding! Is it painful or uncomfortable? Or is it just a cosmetic thing?




  • mefromcc
    mefromcc Member Posts: 188
    edited June 2015

    My pudge feels normal, no discomfort. We will see what happens when it gets liposuctioned 😉.

  • LiLi-RI
    LiLi-RI Member Posts: 291
    edited June 2015

    I had the CAT scan before the DIEP. It was a painless test, but provided vital information regarding vessels etc. I hope this helps!

    Lisa

  • Scarlett152
    Scarlett152 Member Posts: 175
    edited June 2015

    I am finishing chemo on July 9th and will need a balancing surgery with fat grafting to even out my DIEP flap reconstruction. Need about 100cc added to reconstruction side and a lifetime on non-reconstruction side. PS says 2 hour surgery with 1-2 week recovery. Any thoughts on when I would be physically and mentally ready for this third surgery post chemo? PS recommends a long break, although for insurance reasons December would be better. Since I'm doing Zoladex injections I will probably hit my deductible anyway in 2016 plus the cost of mammograms. Would you do December and put this all behind me and start 2016 fresh (unless u count AI's) or wait until Feb/March and have a goof long break and enjoy Xmas??

  • slv58
    slv58 Member Posts: 1,216
    edited June 2015

    Scarlett152, I'm going through chemo right now also and finish the end of Aug. stage 2 will be discussed at my last chemo but I think I'd really like to loose the 20 pounds I've put on during chemo ( damn steroids!) before my PS does the reduction and fat grafting. Have you put on weight with chemo? I believe my PS said that I would have to wait at least one month for chemo to exit body as it interferes with healing. For me, I had stage one March and I honestly think I'll wait till March 2016 for stage 2. This would work well for taking a week off of work as well. I think you can judge how well you are feeling post chemo and decide if your strong enough to do this sooner or later. I'm only half way through chemo and it is doing a number on my blood- feeling very exhausted- I need a break!

    When did you have your diep? Good luck deciding, I know it's hard but won't it be nice to be done?!

  • mefromcc
    mefromcc Member Posts: 188
    edited June 2015

    I haven't contributed much lately. I have been in a funk because the wound that opened 5 weeks ago was still the same 1/2 inch depth and draining. They tried different types of dressing, but nothing helped. Today, my PS tried something different. He"explored" the wound (doctor speak for jabbing around with a painful probe.) He found a knot of suture material in a lump of pus. He cut it out and then chemically cauterized the area. Hopefully, that was the reason it was not healing. I have my fingers crossed for success.

  • Trvler
    Trvler Member Posts: 3,159
    edited June 2015

    Me: I hope it works out now.

  • slv58
    slv58 Member Posts: 1,216
    edited June 2015

    ME, I'm sorry your going through this, it must be so frustrating but hopefully now you can heal. Positive thoughts

  • websister
    websister Member Posts: 1,092
    edited June 2015

    ME - that would put me in a funk also - hope this is your answer and that healing goes quickly from this point forwar

  • Bogie
    Bogie Member Posts: 286
    edited June 2015

    Good Morning Diep Sisters,

    Well I'm done with surgery Stage one in Nola and I'm thrilled with the way everything ran so smoothly!

    What do they do to your belly button and why is this healing with stitches, forgot to ask. My only pain is in my lower back and feel like a bulge must be leaning or inflammation on a nerve because my leg is going numb. maybe physical therapy to release the tension?

    I have a question, did anyone have breast or truncal lymphadema

    lymphadema prior Diep surgery? If so are you having lymphadema physical therapy now after? My Diep was done June 10th so I'm a few weeks out now.


    Thanks,


    Bogie



  • Morwenna
    Morwenna Member Posts: 1,063
    edited June 2015

    Hi Bogie,

    Good to hear you are pleased so far with your surgery results!

    When they cut to harvest the tummy tissue, they take an elliptical piece from below the belly button. Then they loosen the skin right up to the rib cage and stretch it down to cover the defect, like pulling down a window roller blind! There are internal stitches used to give the displaced skin some stability on the underlying fascial layers.

    The belly button is adhered to the deep abdominal wall tissues, as it is the scar from the umbilical cord, so obviously it cannot move with the skin! (Plus you wouldn't want it on your bikini line!) So they cut around it before they stretch the loosened skin down, then they make a hole in the skin that is now going to cover that location, poke the belly button through, and stitch it in place. It can be slow to heal as, being scar tissue originally, it doesn't have a great blood supply!

    Re lymphedema, I had it in my arm (mild) before my reconstruction, and to my surprise was not made worse by the surgery, even though the surgeon took another three lymph nodes to access my axillary blood vessels. On my right side, where I had a prophylactic mastectomy and immediate reconstruction, 7 nodes were removed, and I did develop some cording in my arm and hand, but no swelling resulted, and the recording is now resolved (6 months post op).

    I did have a bit of pitting edema in my right flap area, that looked like lymphedema, and this improved by wearing a compressive sports bra (Underarmor).

    I was originally advised NOT to use any compressive garments post op, but many surgeons do use compression. My surgeon says there is no real evidence supporting this! ;p

    Regarding your back pain ..... You might seek advice from a physiotherapist if it doesn't seem to be resolving or is getting worse, but it is likely a result of your post operative posture, or maybe you got "kinked" somehow during surgery. I hate to think what goes on while we are sleeping! I had really bad pain in my left elbow for several weeks!! :o

  • Scarlett152
    Scarlett152 Member Posts: 175
    edited June 2015

    Slv58, my DIEP was Feb. 17th and I had a skin graft surgery due to failure of the nipple/areola skin on March 18th. Chemo started May 7th and will finish July 9th. Actually talked this out with a friend on a walk today and I think the whole family needs a break! Think we will try and get away in December and then do surgery at end of February. I missed the whole ski season last year because I was diagnosed in late December (and California had no snow), so maybe I'll use that as an excuse!

    My weight has been up and down since diagnosis. I was up a good 5 - 7 pounds at diagnosis since it was the holiday season and then they wanted me to gain a 5 - 10 more before the DIEP so I had enough fat, so ice cream diet it was! Unfortunately, I tend to gain in thighs and butt, so despite the gain, I didn't have enough fat to fill out the DIEP side to match the non-DIEP side. So, now I'm a solid size 15 lbs+ where I'd like to be. I'm curvy, so I'm sure there will still be plenty of hip fat to harvest for the fat grafting. I've gone up and down during chemo, always coming back to the same weight right before the next round. I'm also on Zoladex ovarian suppression and will start and an AI after chemo, so weight is probably going to be tricky. My MO said not to gain any more during chemo so I'm trying to be good, but only pie and fruit tastes good right now! I should mention that I used to be a 34 F cup size. Had a breast reduction 7 years ago down to a C. During the DIEP, they took out some more volume on the non-DIEP side, so I guess I'm going to end up as a big B or small C when this is all said and done. First my breasts killed my back (hence the reduction) and then they tried to kill me! I'm surprised I'm keeping them at all!

  • slv58
    slv58 Member Posts: 1,216
    edited June 2015

    Scarlett I understand needing a break! I'd love to get away in Dec and am thinking Mexico so stage 2 will have to wait! I wish I could keep my weight down. The first time I went through this I put on about 18 pounds. So far I'm now at 20! I know I will loose it after chemo but I just don't have the willpower to deny myself this time. I amsure my attitude stems from this being an aggressive recurrence. Im also a good cup size difference but find that padded bras help quite a bit. Im a D on natural side and maybe a "flattened" C on diep.

    I have a question for others who had diep around begin of March, my abdominal incision is nice and flat but still quite red. It doesn't hurt at all but it noticeably redder than breast. I realize that going through chemo now does hinder healing but just curious if this is typical? If your incision has faded can I ask what you were using? Thanks ladies!

  • Scarlett152
    Scarlett152 Member Posts: 175
    edited June 2015

    slv58 - my physical therapist really broke up the scar with massage. Sound like the popping of bubble wrap! I tried silicon gel and vitamin E, but did not see a difference in redness. Now trying a Chinese honey based salve. It stinks, but seems to work. Only used it twice though. What is everyone else using? Anyone using silicone tape? What brand

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