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NOLA in September?

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Comments

  • teddybear71
    teddybear71 Member Posts: 38
    edited September 2012

    I re-read my post and realize it sounded so negative. I do not want to scare anyone. Cider8 is correct I did have weight loss surgery which left me with excess skin, this lead to a longer stage 2 due to more work needing to be done aka body lift. Dr. Trahan told my DH that while he had me under he figured he would go for the home run :) I guess I deluded myself in thinking I would just bounce back quicker than I am.

  • KerryA
    KerryA Member Posts: 184
    edited September 2012

    Back at the apartment we rented. Was released earlier this afternoon. Showering is certainly a process. For some reason the 2nd shower today really wore me out. Started a new medication- Tordol? Knocked me out..not sure if I'll go back to the Percocet or stay with Tordol. Feeling foggy and then have times where I feel more clear headed. More swollen than what I anticipated but understand that will go away in time.

    I was very nervous to see myself in the mirror for the first time but was very happy :) The hips incisions were a bit more than I anticipated as well but so impressed with the reconstruction. My husband kept saying how great they look! So many nice nurses at the hospital....was almost hard to leave.

    Thanks for all the well wishes. Off to rest a bit. 

  • PinkHeart
    PinkHeart Member Posts: 271
    edited September 2012

    KBodie,

    Who is your surgeon?  Can you call and ask to talk to your surgeon personally?  Seems like you have been extremely patient and given it plenty of time to heal.  I hope it gets resolved soon and that the hardness is not major.  Still needs to be addressed.   

  • jenlee
    jenlee Member Posts: 204
    edited September 2012

    Kbodie, I had a slow healing area in the center of my abdominal incision from stage 1 that eventually became a very hard lump. I've been assuming it's scar tissue and that it will be addressed at stage 2. I'd be disappointed if I were in your shoes -- have you spoken to one of the PA's? Or asked to have the surgeon call you?

  • bdavis
    bdavis Member Posts: 3,192
    edited September 2012

    I had a lump below my incision and asked Dr D about it before stage II .. he said it was the remnants of the old belly button. I asked if he could get rid of it and he did at stage II... I think if you want it gone, you need to ask, but it would require another surgery.

    Editted... lump was above incision, below belly button.

  • mags20487
    mags20487 Member Posts: 1,092
    edited September 2012

    1 more month....all pre op tests set for Wed this week

    just had a pet scan last week and picked up the report in advance of my Onc appt this week on Tuesday.  Wish I had not.  There is a nodule on the left lung but the report says that there is no hypermetabolic activity.  Says it should be reassessed in three months.  Now I am freaked out about that.  It is on the left lung (lingula) which was my rads side and says that it could possibly be scar tissue which would make sense from the rads...here is hoping!  and here's to hoping this does not set me back for my Diep.  SIGH!!!!!

    Maggie

  • KerryA
    KerryA Member Posts: 184
    edited September 2012

    Chelle- hang in there. Glad to know you're home and resting.  Dr. Cohen worked with Dr. Dellacroce during my surgery as well, as he was at my pre-op appt and then came to visit me in the hospital and mentioned he was there during my surgery.

    All the doctors are great. Dr. Stolier was so nice too. I can't get over how wonderful the staff is here.

    Jenlee- I see your Stage 2 is Oct 4th. We fly out that morning so we won't get a chance to meet up. I will be thinking of you!

  • Jane123
    Jane123 Member Posts: 198
    edited September 2012

    Chelle, I am sorry you are hurting.  Where do you have pain?  The lipo'd areas?  It is nice to read about others that have gone before and gear up.  I am pretty fit but I see some fat on my thighs that could go!  Not really in any one area too much but a sort of thin layer all over.  Can this be lipo'd? Does it hurt more in this kind of situation?   It will be nice to find all of this out for myself soon but in the meantime, if any of you could tell me your experience I'd appreciate it.  

    Way to make it through, ladies!   Peace, Tamara

  • bdavis
    bdavis Member Posts: 3,192
    edited September 2012

    Tamara... I had a little lipo'd from upper belly, and it really wasn't very sore. The sorest part for me was my butt which had a lift (post GAP flap).

  • RunningforSanity
    RunningforSanity Member Posts: 101
    edited September 2012

    Hi KBodie - That sounds really frustrating.  I am sorry you are still dealing with that problem.  Denoument (Dana) had hardness around her abdominal incision and went back for additional surgery to get rid of what she described as an iron plate feeling, if I am remembering correctly.  She is not on the boards too much these days but I will email her and ask her to check in with you.  Good luck with everything.

  • Springtime
    Springtime Member Posts: 3,372
    edited September 2012

    Kbodie, I can't tell what kind of lump you have. But I did have abdominal bloating for a loooong time after stage 2, which was extensive. I think it took 2 years to nearly completely resolve. I have plication (stitching the ab muscles together - would not recommend it, huge recovery for questionable results, for me anyway) and my addominal incision lowered in stage 2. Dr. D. Told me it would take 18 months for the swelling there to resolve. 

    Have you had an ultrasound locally? I did. I had ultrasound just to make sure nothing serious was going on down there....  

  • KBodie
    KBodie Member Posts: 211
    edited September 2012

    Thanks for the feedback. I did have an ultrasound a week and half ago because I was hesitant to say lets do surgery without knowing what it was. Every day they think they will have Dr. S look at it and then he is too busy. The radiologist did not see anything obvious but agreed when he touched the area that it didn't seem right. I think once that didn't show obvious muscle bulging or necrosis, the two things they thought it could be, then they were ready to call it good and step away with no surgery. At least that's how they seemed on the phone. The radiologist mentioned possible denervation. But the nurse at NOLA didn't seem to know anything about that. Anyone had that? I did have plication and lowering of the incision at stage two. I actually really loved how tight and flat it was right after surgery. The bulging appeared after a vacation to Florida. Thought I was swollen from amusement park fun and traveling. But it never went away. Everyone I have touch it says it is weird. Feels like a pregnant belly. Very taut. A doctor friend said it feels like when people have abdominal mesh. A massage therapist said it felt like fluid. I actually wouldn't mind how hard it is if it was flat! But it isn't and no matter how hard I suck it in, it just sticks out.

  • cider8
    cider8 Member Posts: 472
    edited September 2012

    Kbodie, at least ultrasound has ruled out those certain things. I'm guessing they ruled out seroma/hematoma as well? It kind of sounds like the plication will take a long time to resolve, like for Springtime. Have you seen a physical therapist who is experienced w/breast and abdominal surgeries? I'd guess there is abdominal weakness and lots of scar tissue that could be released (by a technique called soft tissue mobilization). I could not believe how weak my ab muscles were when I went after Stage 1. I though I was strong but the PT showed me how I under used a lot of core and over used other muscles. You would also know if abdominal mesh was used by reading the op report (someone correct me if I'm wrong). I hope you get to the bottom of this.

  • KBodie
    KBodie Member Posts: 211
    edited September 2012

    I am sure I don't have mesh. It's just that the area feels like someone who has. No seroma on the ultrasound. My lower abs are trashed! Been doing lots of ab and core work. Even so, about a month ago I tried to kneeboard behind a boat, something I have always been able to do no matter how heavy or out of shape. And I absolutely could not pull my knees up. It's like my head was telling my lower abs to pull up the knees and the abs weren't getting the message. They would not do a thing! Weird sensation. Maybe it is a nerve issue then. I went to a lyphadema clinic in April and they did give me exercises and massage techniques and additional compression. So far, nothing has caused change. But I'll keep trying. Thanks for giving me ideas! 

  • cider8
    cider8 Member Posts: 472
    edited September 2012

    Ok, your comment about brain signals is something I experienced as well. My PT had me so really basic ab work (moves I had never heard of, even as a former althlete). I was stunned when I couldn't do the most basic movements (like lift up one knee while laying down without twisting my hips or torso for leverage). She told me my brain pathways had been interrupted by the DIEP and I needed to learn new pathways. I had to slowly progress the ab work and my brain learned the new pathways. I think this is called brain plasticity.

    My PT told me about an NFL player she treated. I think he was having some back pain and she found that his abs were weak. He was pissed when he 'failed' an ab test because he was doing 200 crunches a day and worked out who knows how many hours a day. Well, his body was not using the most internal ab muscles and his body adapted (with negative consequence) to only using the external muscles.

    So to me, the comment about your body not moving how you wanted it to move is a red flag for me that a PT with the right experience should evaluate you. I don't know that it would fix your belly bloat, but I think it would help.



    I know not everyone has problems after flaps that warrant PT, but I did. I learned a lot about the body I didn't realize. I know finding the right PT can be a PITA. None of my doctors would have been able to direct me to mine. I already knew of a pain Dr that treats patients with PT; she's a breast cancer survivor, wrote a chapter on post mx treatment and speaks at my local cancer support community. There's another PT practice I came across that treats only women and they specialize in cancer patients and pelvic floor issues. Just my experience!

  • Cherrie
    Cherrie Member Posts: 921
    edited September 2012

    Maggie, I was sent home from NOLA 12 hours before surgery when the CTA scan showed a left lung nodule. When it was all said and done, it was damage from 7 weeks of radiation from years earlier. Lung nodules are not uncommon, but I didn't know that at the time. My surgery will finally be Nov. 12 at Fairway. I hope this is settled soon for you.



    I am so sorry some of you are having the issues you are. It is scary to hear this. I so hope I am making the right decision. I have had too much time to think about this. (over thinking) I know these complications are not the norm, but I am not as young as some of you. 😊



    Healing thoughts are being sent to NOLA and CHARLESTON. You girls are the bravest people I have ever heard of.







  • mags20487
    mags20487 Member Posts: 1,092
    edited September 2012

    hopefully they will say it is nothing...did they biopsy your nodule or just do more picturesz/ I have chest xray this week on Wednesday for a preop test. Maybe they will be able to just tell from that.  I too had the 7 weeks of rads and am now convinced that is what it is. 

    Maggie

  • Springtime
    Springtime Member Posts: 3,372
    edited September 2012

    KBodie, welcome to the plication club. I was also very frustrated, very bulgy, I took pictures, I sent them in, I complained, I got the ultrasound to rule out sernoma. All I can tell you is: the more active you are, the more it will bulge. The more you use your ab muscles, the more it will bulge. Over time, this starts to deminish. Plication is a BITCH! You ladies out there, I hope you are listening to this!  I do have a very flat tummy now, so there is hope KBodie. It does look good, however, for me, it looked quite okay prior, and was not worth all of the recovery and bulge time. Anybody who considered this really needs to weigh the benefit with the recovery. If the doc is not sure you'll have a significant benefit, I would suggest you skip it! I wish I did. 

    If you are like me, and this is just the results of plication and nothing else is really wrong, the only remedy is TIME lots of time -- at about 9-12 months you will notice it is better, but not all better, 18 months, it will stop being so dang annoying, and at 2 years, you'll finally feel that you have turned the corner. I can now bike ride 14 miles - no bulging, just a tightening that I am sure is normal. I can do yoga, I am very active. HOWEVER, I feel my abs are just not the same and I can't do the same ab things I used to do, something is really different down there. Whatever. !!!

  • lastar
    lastar Member Posts: 553
    edited October 2012

    I'm visiting my family in Alabama then taking the train to NOLA on Wed. Can't believe stage 2 is happening this week! Anxiety levels getting higher. Betsy, I'd love to meet you but don't make a special trip back to SCSH just for me. I know you have spent enough time there and there are more fun things to do! :)

  • denouement
    denouement Member Posts: 190
    edited October 2012

    Hey ya'll - popping back in after being MIA for a while, work is just SO busy and no signs of slowing down :-( 

    Yes, I had the serious ab tightness going on and went back for a 2b in July just to address this.  I was really on the fence as I did not want any more surgery but every day it was bothering me (the metal plate feeling Sonya alluded to) and it just was not getting better over a year after surgery.  I'm VERY happy I went back and the stage 2b very much addressed my issue.  I did not have Dr. D do anything other than address by abs so it was a short surgery and I recovered very quickly.  My situation might be different than yours Kbobie - I will PM you to chat...but here is what my situation turned out to be:

    - Stage 1 in May 2011, Stage 2 in Aug 2011 - I have a hysterectomy at the time of my stage 2 so Dr. D did NOT touch the center of my abs as this was being worked on by Dr. VonAlmen
    - I did not have pilication and the majority of my issue was in the center of my abs
    - Working out/stress aggravated my abdomen the most - it stuck out despite me losing 20 lbs after stage 2 and caused me discomfort every day
    - I was told I have a long torso and was very much borderline for DIEP flap as Dr. D needed to pull me VERY tight to get enough tissue for both breasts
    - My ab incision was pretty low but as discussed with Dr. D sometimes it can just "hit you in the wrong area" which can impede nerve function, strength, just feel weird etc. 
    - When I went back for 2b he opened up the middle 2/3's of my incision, removed scar tissue (he did not see anything untoward) and moved the incision down about 3 inches so the bottom middle is just above my pubic ridge

    The placement of the scar just seems to be much better and no longer cuts me the middle or make it feel like I have a tight band around my mid-section cutting into me.  As I said I didn't not have Dr. D do anything else so I was back feeling pretty much 100% at 4 weeks, very easy surgery compared to the first 2.  Hope this helps!

  • chellehump
    chellehump Member Posts: 374
    edited October 2012

    Hey there ladies

    Been off here for a couple of days. I'm home and resting. It's taking me a little bit to get used to have an incision that goes almost (minus an inch or two) all the way around my body. I also believe I had plication. My Dr. made a mess of hysterectomy and I think Dr. D was trying to fix some of it. I felt the bloated feeling today and I am a bit nervous on how this will all turn out. I am still so sore, but it's just too early to see real results yet. I know after this week I don't have to wear the girdle anymore, but I know there are many women on here that still wear spanx or something else after.  Does it help? My thighs are my biggest problem, so I just want to do whatever I can to assist the lypoed areas :)

    I had a pretty rough day today, so I am going to sign off and try and get some sleep.

    Sending gentle hugs to all those who were there with me and best wishes to the ladies coming up this week!!

    Michelle

  • Lesleyanne67
    Lesleyanne67 Member Posts: 66
    edited October 2012

    How much time do they typically suggest you take off work for stage 2?

  • bdavis
    bdavis Member Posts: 3,192
    edited October 2012

    Hi Michelle,

    I am not sure what happened to my post.. Argh.

    I wore compression for 6 weeks. Dr D said I had to wear it for 2 24/7, but for optimal results to wear it for 6 weeks. I stopped wearing it a night at two weeks. It was very liberating!!

    LesleyAnne... I took 2 weeks, but that was mostly because it bumped into Thanksgiving break. A good week  or week and a half would be the minimum... Two was great!! It also probably has a lot to do with what you have done. I had a lot done.

  • KerryA
    KerryA Member Posts: 184
    edited October 2012

    Hi All,

    Doing ok. Starting to notice the swelling in my legs going away. Showered for the 1st time out of the hospital. Rough one. Thought I was either going to pass out or get sick/extreme nauseau? Does this get better with time? I don't know if its just the effort from showering or standing try to get the girdle on?  I had my husband and mom to help and it was still tough. Took a good long nap after that.

    I am sure my breast are still very swollen but larger than what I was anticipated. I keep reading posts from many of you that its easier to go smaller than vice versa.  I am grateful how they look overall..very natural. I am sure they are very swollen and that is why they look so full. Is this normal? Any feedback??

    I also have a bit of a scare yesterday and asked Dr. Trahan, who was the dr on call. I felt a couple "bumps" on the upper part of my L breast closer to my chest. Said it was probably just nodules and is normal where the flap (breast) ends and chest begins.  Just curious has anyone else noticed this?

    Lots of questions. I am overall very happy. Don't want to seem like I'm complaining just starting to notice how things are looking I guess after a few days. Can't believe I'm also a week out from surgery.

    Hugs to those recovering and those scheduled for procedures this week!

  • bdavis
    bdavis Member Posts: 3,192
    edited October 2012

    Kerry... When I showered I preset all my bandages, betadine, clean clothes etc out before I showered which helped with the labor of re-dressing. I also SAT while I did most of my bandaging. I would lay a towel on the bed and all my tools around me. It made it much easier because it truly is exhausting. And this does improve... About breast size, mine were enormous. Once I could get out of the surgical bra, I went to buy a bra and a 42DD was what fit (I am a 36C)... patience there... and feeling lumps?? Very normal. I suggest you not feel your breasts. I know it is hard, but leave them alone. After stage II it all comes together and these lumps, bumps, edges of flaps all goes away.

  • jenlee
    jenlee Member Posts: 204
    edited October 2012

    So it looks like i'm the next person on this thread headed to NOLA. Almost 8 pm here, flying out early in the morning, and haven't packed yet. Thank goodness I won't need much. Looking forward to meeting Bdavis and LAstar. Will pm you my cell phone number. Kerry, you too... Maybe your post op is the same day as my pre-op? Sending you my # as well. Staying at the Residence Inn with my entourage. My sister is starting out as my private nurse and hubby is bringing my daughter for the weekend. We've been reading a historical fiction series based in New Orleans, so she'd love to see the sights. At one point, she said she didn't want to go anywhere where people believed in slavery. Before bed tonight, she asked if New Orleans has electricity:) Clearly, I need to explain things a little better.
    (BTW, just to warn you, I look ridiculous! My skin hasn't produced a single drop of oil since chemo, so my face is like a prune. My hair can't decide if it wants to be a porcupine or chemo curls, but it is now almost orange because I got my first gray hairs this month and decided to color it yesterday but that didn't work so well and there's no time to deal with it:)



    I have a hard pooch above my abdominal incision too, right in the center. About the size of a small salad plate. Feels like a salad plate too, not like fat. I've attempted to wear several lightweight knit skirts and dresses lately, but the bump shows. Hoping it can be addressed in this stage.

  • besa
    besa Member Posts: 289
    edited October 2012

    Kbodie- haven't been on this thread for a while.  I am sorry to hear that you need to deal with this.  Can you ask to have one of the doctors call you back and specifically address this issue.  You should be getting more information.

    I have a question about those of you who have met Dr. Cohen.  Is this Dr. Michael Cohen?  As many of you know I had a DIEP done at a small local hospital in Maryland (DC suburbs)  that had many problems.  I had two revisions to try to fix some of this at Georgetown U. with Dr. Nahabedian.  A Dr. Michael Cohen was the surgical resident (or fellow?) assisting Nahabedian.  I had heard a rumor that Michael Cohen was going to work in New Orleans.  Is this the same Dr. Cohen?  The Dr. Cohen at Georgetown was very supportative and I liked him.

  • annalive
    annalive Member Posts: 286
    edited October 2012

    Besa -- On the CRBS website, if you click Dr. Michael Cohen's name at the top, you get his bio page and picture: http://www.breastcenter.com/our-doctors/michael-cohen-md/ . He completed plastic surgery training at Georgetown U and fellowship in breast recon at Mercy in Baltimore. 

  • KBodie
    KBodie Member Posts: 211
    edited October 2012

    Is anyone here planning to go to the FORCE conference? Those with impending surgery or in recovery obviously not and blessings to you. Much like a pregnancy or something big like that, it does all fade quickly from your mind. Which is probably the only reason I am considering a 2B! They called yesterday and offered to tighten muscles more. Like Dana I did have a hysterectomy at stage 2. Waiting to see what insurance says. Have those of you who did 2Bs had good luck with insurance?

  • KerryA
    KerryA Member Posts: 184
    edited October 2012

    Bdavis- Thank you for your insight. Were you able to go down in size at Stage 2? Should I mention something at my post-op tomorrow? Not sure if that is appropriate. I don't want to offend them yet wondered if at that appt we does some things that will be done at Stage 2. Thank you again for making me feel okay! 

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