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TE TROUBLE

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Comments

  • Rennasus
    Rennasus Member Posts: 642
    edited August 2011
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    Hi Ladies! I have a new TE date: December 1st. PS said my right side (where the TE was removed) is healing well but the tissue is not "mature" enough yet. (I beg to differ!) He'll fill the right side a little (100ccs) at surgery then we'll wait several months before he starts the s-l-o-w fill process. I doubt my exchange will be before NEXT summer. Drag.

    My left side has been at 350 ccs since my BMX on Feb 3 — and we'll be lucky if we can get righty to that same size b/c I lost skin during my 3 incision revision surgeries to try and save my right TE. Bottom line: I'll be smaller than I started out, and I wasn't big before! Booooo.

    At least I've been cleared to go swimming for the first time all year! Haven't been in the pool since last fall. 

    BC is one nonstop party, isn't it? The fun just never ends. How is everyone doing? 

  • Just_V
    Just_V Member Posts: 436
    edited August 2011
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    Renn!  the POOL!  Oh my gosh - I finally got the clearance for the pool and it is heavenly.. the perfect stretch for the arms is the back stroke... so wonderful.  go jump in the pool now!

  • Just_V
    Just_V Member Posts: 436
    edited August 2011
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    Oh - my new PS rescheduled my appt from today to 9/1 :(... but what is a few more days... bummer..

  • shelly56
    shelly56 Member Posts: 142
    edited August 2011
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    Just V Form:  I underwent a bilateral DIEP in January, then a revision in July.  You can "pm" me if you like and I will fill you in on details, if you want or are considering this reconstruction method.  Shelly

  • Just_V
    Just_V Member Posts: 436
    edited August 2011
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    Hey you all - I just confessed on another thread what a thread hopper I am - I cannot remember or find (yes - I looked - pathetic, I know) where I found this....... but I did find this on one of the threads, and it made me cry - it is sooo worth a listen... http://www.youtube.com/watch?v=WxIt70j_SPk&feature=youtu.be
  • specialk
    specialk Member Posts: 9,226
    edited August 2011
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    just v shea artist new name every week - Hi!  Did you change to a new PS after the communication breakdown?  Is that who the delayed appt is with?  I have my first fill next Tues - PS is happy with how things look.  I have to say I was dismayed when I first had the TE put back - symmetry did not look like it would ever be the case, but now that the swelling has subsided things are looking good.  I am pretty happy actually - don't want to say that too loud so as not to tempt fate...And, yes Renn, BC is one non-stop party!!!
  • jblcsw10
    jblcsw10 Member Posts: 60
    edited August 2011
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    Hello All, I am new to this thread and very frustrated. I had BMX w/TE 6/28/10, almost 14 months ago. I developed extensive necrosis on one side due to radiation 9 years prior. My PS took the side of letting nature do it's course, and finally this past Feb. the skin healed. I have been VERY slowly getting fills as that side is very tight due to the scarring, about 25 cc every 2 to 3 weeks since Feb. Now, a week ago, a small spot on that breast appeared and grew to about the size of a dime. Yesterday the PS confirmed it is eschar, or the skin is dying! Ugh! He wants to see me again in a week. I feel like I am starting all over again - I had just had my last fill two weeks ago and we were going to start planning the exchange. Now I am feeling like it will never happen. I read through this thread and am amazed at all many of you have been through. I just feel like I am going to choice to remove the implants and give up on having breasts. I guess thats my frustration talking. I keep reminding myself how lucky I am - my cancer is gone, I am not in pain, I did not have to have chemo. I do really feel grateful. But still, frustrated! Thanks for listening....

  • Just_V
    Just_V Member Posts: 436
    edited August 2011
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    Jane - my journey has been much shorter than yours... at this point, because my skin is compromised, I am doing the flap surgery in order to 'harvest' skin (sooo gross using that term).. I am also interviewing two new PSs just to confirm that what my current PS is doing is right... I am actually now very excited about the DIEP flap surgery and hope it is viable for me... if you want any of my opinions on breast recon outside of TE/implants, just PM me.

  • shelly56
    shelly56 Member Posts: 142
    edited August 2011
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    Everyone/Anyone considering DIEP.  IT IS MAJOR SURGERY, you should know that and although PS's are very quick to accept you as a patient, make sure you know your new breasts will not look perfect much less, even close to what they did look like, and/or will not feel the same. I do think women should give it serious thought, especially if they underwent radiation to the chest, as this radiated skin is much thinner and lacks elasticity.  I was told to lose 10 lbs before the surgery, but that is so it makes the surgeon's job easier to locate and dissect the arteries & vessels in the tummy tissue. I also was what he called "vasospastic" --(funny I know!) in that my arteries shut down if they were moved or touched and would actually hide and were not easy to locate.  Ended up using a vein from left armpit to connect blood supply to the chest.  I would not give permission for using a vein from my leg.  Now I definitely have doubts whether I would do this again, but maybe in time I'll be able to feel better about it.  Good luck out there !!! 
  • specialk
    specialk Member Posts: 9,226
    edited August 2011
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    jblcsw10 - Howdy neighbor - I am right up the road from you!  I am so sorry for all you have been through and so hope for you that where you end up is ok for you.  Sometimes this is a bumpy road, isn't it?  It is so frustrating to lose your breasts and then the recon doesn't go as we hoped it would, it is insult to injury.  I too am nervous about the skin issues - I had necrosis on both sides but the right (cancer side) healed up on its own.  The left side was a nightmare that required 3 excisions, removal of the TE for 6 months, and then it was put back in July.  So far, so good on my skin but I have a rash that is very slowly diminishing.  It is right on the cleavage side of that left one - it is making me nervous.  I am prone to rashes and skin problems but PS says it is OK.

    Shelly56 - Sorry to you to about your struggles.  I was not aware that there was  such a thing as vasospasticity - like the blood supply is shy.  Where are you time wise?  Was this a recent surgery?

  • chickadee521
    chickadee521 Member Posts: 423
    edited August 2011
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    SpecialK-Right now I have 2 TE that look about the same (same place I mean) although 1 is smaller then the other.  Are you saying that I should be preparing myself for the fact that when the PS takes out the one TE and replaces it that it may not be in the same position as it is now?

  • specialk
    specialk Member Posts: 9,226
    edited August 2011
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    chickadee - is yours being swapped or will it be out for a while? Was it you who had a leak? My left was out for 6 months, only had the right.  When PS put the left back in I had scar tissue so the new left TE was tighter even with less surgical fill.  My right TE has never been filled, still has the original surgical fill.  With swelling they looked pretty different from each other.  To avoid stretching the skin too much and having too much pressure he put very little saline in so I can see more of the TE outline under my skin, it is oddly shaped.  Also the scar on the skin surface distorts the shape slightly.  As the swelling decreased they now look pretty much the same.  At my last PS appt I asked about having differing amounts of saline in each TE for the duration of the fill process and also about having different size implants at exchange - he said that possibility does exist.  He is after symmetry as a goal.

  • chickadee521
    chickadee521 Member Posts: 423
    edited August 2011
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    Special K-I am the one that sprang a leak.  So yes, the goal is to just swap it out.  He actually hopes to put quite a bit of fill in it when he swaps since the skin is already stretched.  But now I am nervous if he rushes it that I will run into more problems healing, which I have not had any trouble with like you guys have.

  • specialk
    specialk Member Posts: 9,226
    edited August 2011
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    chickadee - I think you should be fine, especially since your PS is just swapping.  My problem and the reason for the difference between the two TE is the 6 month period where I was flat on that side.  It seems like he should be able to put as much fill in as is in there (or supposed to be without the leak) currently.  I have a little fold at the top if I lean over, it kind of scrunches up, so I can tell there is less on that side - otherwise they look about the same.  Be prepared for your to look a little different for a bit because of the surgical swelling - it will feel tight again for a little while.

  • chickadee521
    chickadee521 Member Posts: 423
    edited August 2011
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    thanks for the info!!

  • specialk
    specialk Member Posts: 9,226
    edited August 2011
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    chickadee - no problem!  When is your TE swap?

  • chickadee521
    chickadee521 Member Posts: 423
    edited August 2011
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    Sept 2nd is the swap.  Hope to be done with fills by the end of Sept but will probably hold off on the exchange.  We are going to on vacation at the end of Oct and don't want to be just done with a surgery.  Not exactly what I had planned, of course cancer wasn't what I had planned either!

  • specialk
    specialk Member Posts: 9,226
    edited August 2011
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    chickadee - 2 Sept will be here quickly!  I think a lot of PS like to have the final fill in and stable for a number of weeks before exchange anyway - so, perfect time for a vacation!

  • pumpkinsoup
    pumpkinsoup Member Posts: 1
    edited August 2011
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    I thought I was the only one with TE troubles! Original TE put in December 5, 2009. Had rads June/July 2010, so couldn't have exchange for another 12 months. Was expanded to 380cc's, but had very bad encapsulation due to rads, so had a capsulectomy on March 28th 2011 with a new TE--starting over with fills--joy! At 250cc's incision started leaking. Had more sutures put in, which didn't help. Continued to leak until I got a bad case of cellutis about 4 weeks ago, which landed me in the hospital for 8 days. PS said my skin was compomised due to rads. So, we're trying something completely different. PS doesn't want to use another TE because he doesn't want anymore incsions. Since I had a skin sparing NS mx and was already expanded, on the 7th day in the hospital, I underwent another surgery with a Mentor Spectrum expandable permanent implant. It may not be the prettiest outcome, but I'm done with trying to heal my incision and not being able to get on with my life. But, the incision looks to be healing with 100cc's so far. I won't get the bigger boobs I had hoped for, but I'll hopefully make it to 280-300cc's.

    So, I'm kind of a science experiment. Awesome PS, who's only used these permanent expandable implants on MX patients two times before me! It wasn't his first choice either, but if it works, I'll take it!

    Sorry my post is so long, but just wanted to give another perspective...reconstruction's a pain in the you-know-what! :o 

  • specialk
    specialk Member Posts: 9,226
    edited August 2011
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    pumpkinsoup - so sorry about your recon issues, those bad rads mess with so many ladies :(  Hoping your permanent expandable works out.  I just became aware of those recently - pretty nifty.  Keep us posted on your progress, I am sending you positivity!

  • Jaimieh
    Jaimieh Member Posts: 925
    edited August 2011
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    I was a TE troubled person...the key word is was.  I had TE put in 1-8-09 during bilateral mx.  Had the TE exchanged on 6-17-09 for implants.  On 8-7-09 I blistered at the incision and about 2 days later developed a whole.  We stitched it closed 3 times until the incision was just ripping open.  Another PS decided to exchange them for smaller implants on Aug.  3 weeks go by and all is healing well.  The day after my post-op I develop blisters which we tried to stitch closed with no luck.  So implant removal 9-17-09 which initially I refused to go in because I didn't want to be flat.  October I kept having to go back to PS to get drained, time and time again.  October 31 I was up in the early AM with 102.7 fever and after going to the hospital I had an infection in the scar tissue in my chest.  11/2/09 I had the scar tissue removed and I could feel my ribs after that.  I was missing a ton of skin and was really down and out.  I was doing consults and finding out what my options are and I talked to NOLA and I was a candidate for hip flap. 

    1/26/10- I had hip flap in NOLA.  YES, it is a huge surgery and things can happen but I needed to take that chance.  It was a success and I had less pain with the flap then I had the entire time with the implants.  Was it all sunshine and roses...hell no but it was worth it.  Yes they are not my old boobs I never expected to get them back.  I didn't want them back they had something in them that was trying to kill me. 

  • specialk
    specialk Member Posts: 9,226
    edited August 2011
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    jaimieh - so glad things worked out for you!  Do you ever wonder why some of us have to be challenged with the recon issues?  Glad you came to tell your story - it will help whoever finds themselves in the same kind of predicament.  It is always good to hear from someone who has come out the other side successfully!

  • Rennasus
    Rennasus Member Posts: 642
    edited August 2011
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    Pumpkinsoup & Jaimieh: It helps *so* much to hear from other ladies who have had complications with reconstruction. The best part? You BOTH have a successful outcome (even tho it took a long time). YAY!!

    Thanks for sharing your stories! Laughing

  • chickadee521
    chickadee521 Member Posts: 423
    edited August 2011
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    Special K-My PS wants to wait 3-4 weeks at least.  I am thinking over Christmas break might be a good time.  I am a substitute teacher and really want to get back to doing something other then sit around the house and fret about BC and my leaky expander :)  I was a little worried about leaving the TE in there too long, but after reading some of the stories on this thread now realize that isn't a problem.  I just hope my greed to get a nice set doesn't land me more trouble then it is worth.

    On a different note....what kind of swim suit works best with the tissue expanders?  Anybody have any suggestions?

  • miasanta2007
    miasanta2007 Member Posts: 87
    edited August 2011
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    So..first time on ths thread, seen some of you before -hey V how are you? Smile

    I'll try to make a long story short...Had a skin and nipple sparing BMX with immediate reconstruction (implants) on 6/28. I developed skin necrosis on both breasts and last thursday 8/18 I had the implants removed and replaced with TEs. The PS removed the dead skin and my right nipple is gone too. My left breast is tiny and has a nipple and insicion isn't too bad, my right one is flat,lumpy and scarred(incisions) and ugly....I have to see PS every week for awhile to make sure everything is healing ok. I probably won't have my first fill for 3-4 weeks, he said at my follow-up on Tuesday. My concern is: There's some drainage of pink fluid, mostly from "the ugly one'". Is this normal? Shouldn't the sutures close all incisions? It's like: IS THIS EVER GONNA BE OVER?

    Special K: I'd seen you on another thread and I see you are from Tampa. So am I (well Wesley Chapel, but my BS is in Tampa and I had my surgeries at UCH Women's Center). When my BS saw me with all my necrosis he acted like he'd never seen anything like it before... Thankfully  my PS and staff are very reassuring and they're seeing several patients "like me". Just out of curiosity, who's your BS? Mine came highly recommended and is renowned here in the area, I find it hard to believe he's had 100% success rate with his skin sparing mastectomies...

    I'm so thankful to be able to spend some time heree with y'all! (( hugs))

  • Just_V
    Just_V Member Posts: 436
    edited August 2011
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    Hey Miasanta - welcome.... I am not sure about the drainage but I would call your PS and ask.. Also, as you may know, I am at the point where I now have appts with two new PSs just to get other PSs' opinions.  My MX boob (sans TE) is very Salvador Dali looking and I need other doctors to tell me that it is 'fixable'.  My PS seems to have all the credentials but I've been surprised by events so he has not been prepping me well... ergo, the second opinion.

    With my incisions, I continued to ooze for quite a while, but it was not thin like water or juice... more like ooze. 

     Regarding 'IS THIS EVER GONNA BE OVER' - Amen to that sister... honestly - the worst part is not knowing what could hit us next....  but you and I have been at this less time than a lot of the folks.... still sucks though...

  • specialk
    specialk Member Posts: 9,226
    edited August 2011
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    miasanta200 - Hi!  I just came home from a Herceptin infusion.  I live almost to County Line so just barely south of Wesley Chapel!  Small world!   I am so sorry you are having issues with necrosis and had to lose your implants.  I know you must be disappointed.   My BS is Charles Cox, PS is Pedro Soler, MO is David Wright.  I also have PT at Moffitt and I am participating in a research study at Moffitt in conjunction with USF, but my BMX was at UCH Women's and my recent surgery last month to replace my left expander was there also.  Up until last month I worked at UCH in Transfusion Services.  I have also had surgeries at the Morsani Health Center at USF and the Tampa Ambulatory Surgery Center down by St. Joseph's (closer to the PS office).

  • Rennasus
    Rennasus Member Posts: 642
    edited August 2011
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    Miasanta: Welcome and I'm sorry you had to join us here! I had necrosis initially too, it was removed and skin re-sutured, but the darn incision line leaked clear fluid for months.Are you eating lots of protein? It really assists the healing process. 

    I *finally* got the pathology report from my TE removal in July. My PS debrided my right chest wall and sent the tissue to the lab. Final Diagnosis: "Epidermal inclusion cyst with associated reactive fibrosis and chronic inflammation. No malignancy identified." So I guess this "cyst" was aggravating and inhibiting my healing... Lucky me! I wasn't able to discuss with my PS b/c I received the fax after I got home from my appt. Am seeing my PCP next week though and will ask him more about this. 

    Any other Epidermal Inclusion Cyst girls out there?


  • miasanta2007
    miasanta2007 Member Posts: 87
    edited August 2011
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    Hi Rennasus! well I love carbs...lol but I'll try more protein!! so your incision never healed and you had to have the TE removed? mine is leaking clear-pinkish-yellow fluid, but it's only been a week...

  • miasanta2007
    miasanta2007 Member Posts: 87
    edited October 2011
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    SpecialK: OH you're in New Tampa! How funny! I.m sorry that you've had to go through so much  with surgeries etc., but it is great to talk to you and others with experience!

    My BS is John Cox! Haha, we've got the brothers Cox! He's very nice but he's kinda hard to read, almost awkward...and he told me the only reason that this should have happened to me (the necrosis) is if I had smoked!  Well I don't smoke! and that's how I said it to him too. I just know he's seen this before or at least heard about it from his brother.....My care has been turned over to my PS Paul Albear now, I don't need any other treatments, but I do see Dr Cox again in 6 months for follow-up. I had a feeling that your BS might be one of them, I don't know why..but I guess I have bad feelings because of what went wrong, he made everything sound like a breeze at the consultation and I'm bitter now...I'll just have to get over it!!

    V, a 2nd opnion never hurts..but I kind of feel the same way with my PS. I really, really like him, but I know he doesn't like to talk about the "what if"s, I have to ask....sometimes I feel like we could have skipped some steps and expensive surgeries and just gone for the worst case scenario right offt he bat. Is that bad? I'll probably end up having flap-surgery too...unless I just stop now andremain boob-less Frown

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