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TE TROUBLE

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Comments

  • Lifeafter
    Lifeafter Member Posts: 298
    edited August 2011

    psalms91 - thank you :-) I have to wait until Halloween to have mine reinserted. It sucks but its nice that my dr doesn't want to rush and get it overwith cause that could cause problems. Keep an eye on your incisions. As long as they look good and you have no fever, you'll be good to go when it's time to put them back in.



    Michelle

  • psalms91
    psalms91 Member Posts: 93
    edited August 2011

    That is what i am doing, but it is like i am jumping the gun.When my temp gets 99.2 i start panicking, even though it is not a temp,if i feel sluggish i get paranoid, i am tired, tired tired. I just feel so violated after that last infection that ended with the removal of my expander.Actually my diagnosis side looks good and had never given me a problem.

    michelle-I think aroound October or the beginning of November i can consult with plastic again, but in the mean time what will you do.Is there a special routine youare committing to, i feel i am destroying myself withthe wrong food( sugar) due to be stress and a home

  • specialk
    specialk Member Posts: 9,262
    edited August 2011

    psalms - you sound sad, I am sorry you are having a hard time.  How is your temp now?  Do you have enough energy to walk?  Maybe a little exercise will take your mind off things and help tire you out so you sleep well.  Also, make sure you are eating enough protein to provide energy for yourself.  I know it seems like a long time to wait to put your TE back in.  I was distracted during the 6 months mine was out by having chemo, so it was a pain to deal with the prosthetic and disguising clothes but the time went by and now the lefty TE is back in.

  • Kyta
    Kyta Member Posts: 273
    edited August 2011

    Psalms - I felt really down and out during the period that I had an infection, then eventual TE removal. I felt much better physically after it was removed. When I learned that it would take 3 months to re-insert the TE I was definitely discouraged….it sucks to wait so long to get back to where you were!! Take comfort in knowing that time flies by fast…this is but a bump in your long life. I had my left TE re-inserted June 20th, and on Thursday when I go for a fill, I will finally be back to where I was in January, and match the other TE side again. yahoo…..no sign of infection!! 

     Specialk and mrrochon - good for you for having the stamina and will to work out….I keep thinking about it, but just can't seem to get motivated:( 

  • Just_V
    Just_V Member Posts: 436
    edited August 2011

    So I am struggling... with the issues I've faced and the fact that I feel like I've been blindsided on each of them (did not even occur to me that an infection would mean removal of the TE, then after I was OK with the removal and need for replacement, the news that scarring was too extreme and I would need a flap surgery instead), and with the fact that my PS broke the news then told me to make an appt for six weeks in the future to discuss the flap options.... I am having a crisis of faith with my PS.

    So I have appts (next week, then the day before my scheduled appt with my current PS - at the end of September) with two new PSs - both of whom are supposed to be 'experts' in flap (DEIP, SEIA) surgeries...

    So today at work I started googling some more the three PSs... and my PS is right there with the other two as far as being totally into the DIEP, SEIP surgeries... So I feel like, am I making the right decision to talk to the others?  One hosted (along with about 10 other SouthWestern Medical Center faculty of which my PS was one  -- yes - my PS is a asst professor at SW TX Med - one of the best teaching hospitals in the country). 

    I don't want to piss off the PSs, acting like my current one is not good enough -- he may be - but I swear that I did not know what might happen - yes, complications, but they were not explained to me.. So,  you all... do I keep my other appts or not?

  • specialk
    specialk Member Posts: 9,262
    edited August 2011

    V - is your current crisis of faith with your PS having to do more with communication?  If so, maybe you go see the other PS and see if they get more style points for communication.  Were you satisfied with all that happened work-wise with current PS prior to this scarring news?  Is there an objective way to measure all 3 PS's product, i.e. - patient satisfaction with their work?

  • psalms91
    psalms91 Member Posts: 93
    edited August 2011

    Special K- Thank you, yes i have encough energy to walk, i know that i need to channel this energy else where- beside the couch and thinking what if.....

    Mich_M- my temperature flucturate no higher that 99,4m even my rectal temp was normal.I just am obsessing.Do any of you ladies do any home remedies? Such as a vegatable drink that is fill of cancer fighting remedies, i seen it on DR.OZ one day, tape it and my little one erased it, i need the ingredient, i am wanting to help myself instead of adding to the problem.,

  • psalms91
    psalms91 Member Posts: 93
    edited August 2011

    BTW I AM SO SUPER HAPPY FOR THIS TOPIC, IT IS WHAT I NEED..

  • specialk
    specialk Member Posts: 9,262
    edited August 2011

    psalms - you are so funny!  I googled Dr. Oz vegetable drink - here is what came back:  juice of a lemon, 1/2 c. parsley, 1 rib chopped celery, 2 handfuls spinach, 1 piece of peeled ginger, 1 med. cucumber, 2 apples, ice cubes.  He says put everything in the juicer except the ice.  When done pour over the ice and enjoy.  Does that sound like the one you had on your recording?  I think I would just have some of that V8 Fusion stuff that has fruits and vegetables all in one.  It might be pretty similar.  I am not sure I could handle the spinach part.  I like spinach but not in a drink!

    also - I am from L.A. I lived there until I went to college in San Luis Obispo, then moved up to Sacramento - I live in Florida now but I am still a born and bred Cali girl!

  • Rennasus
    Rennasus Member Posts: 642
    edited August 2011

    psalms, these TE setbacks really challenge us all.  And once we've been down the road it's hard not to keep looking over our shoulders. Sigh. I think I need that vegetable drink! (If I only had a juicer...!)

    V: They can seem redundant and awkward (PC-wise) but 2nd opinions really can provide clarity. If nothing else, they strengthen our original decision to go with who we go to. That being said, I would go to at least one of your PS 2nd opinions. If you have the strength, go to both! 

  • Lifeafter
    Lifeafter Member Posts: 298
    edited August 2011

    psalms91 - I understand what you are going through.  I never thought I would be one of the ladies here giving advice and trying to keep upbeat.  I think we all go through it and never really stop not going through it.  It's a process of working through it and worrying about only what you can change.  For me it was looking in the mirror to what I'd become after all these surgeries and the food I was eating.  I have the clothes I was wearing a few months ago that I can't get into.  I've only myself to blame for that.  And let me tell you I've had my fair share of crap to deal with that I could easily blame it on - six surgeries in a year, sending the oldest off to college, drama with the stupid ex, a teenage daughter at home with raging hormones, a paralyzed dog,work, etc.  But I don't want to be one of those women who clings on to that.  I'm back with my personal trainer and working out with a coworker, my best gf and my oldest daughter.  They give me that competitive edge.  I call myself the human Seabiscuit, I don't like to be behind for long.  I throughout all the bad food just like an alcoholic would their alcohol.  I'm a carb addict.  I have to force myself to stay on track but I let my coworkers know that I'm back on it.  Just knowing they are watching me helps me to stay away from the snack counter and stick with the food I've prepared and brought to work in my mini igloo.  Knowing I'm in control of me, gives me the strength to get through this.

    Again, trust me, four weeks ago I was at the bottom of a hole ready to give up.  The ladies in here have been a HUGE help by sharing their bad times and good times.  Knowing you are not alone is a tremendous help.

    V - I have to say that's in the back of my mind and I'm mentally preparing myself for it.  How do they determine that there is too much scar tissue? I've developed scar tissue on the right side where they took the expander out.  It's developed a fold, with the incision line sinking in the middle.  My PS said two weeks ago that it should break up.  But I have those what ifs in the back of my head.  You are not crazy to want to talk to other PSs.  Shop around, it's not like you have to have this done tomorrow, you have some time.  I agree with what SpecialK said.

    Really tired and sitting in bed with my hot tea.  Ready to call it a night!

    Michelle

  • Just_V
    Just_V Member Posts: 436
    edited August 2011

    Michelle - my scarring in on the incision line which my BS did in the fold under the crease... It is about 1/2 inch deep and 1/3 inch thick in places... but when the TE was inserted, I had skin between my nipple (nipple and skin sparring surgery) and the incision that did not heal right -- I think that is the source of my scarring... I saw a mastectomy/DEIP surgery from Beth Isreal where the BS removed the breast tissue via an eye shaped slit on the outside edge of the breast - preserving the skin and the nipple.  My issue, according to my PS, is that the skin at the edge of the incision had compromised blood flow...

    SpecialK - I really think my issue with my current PS is that I feel like I've been blind-sided.. he is very tactiturn.  If I don't ask, I do not get told... He tells me we will end up with a beautiful breast, but I need the details, damn it!  LOL.  So we will see what the other PSs say - if they say the same thing, then I will have more confidence... One issue is that my current PS was born in 1975 - very young.. the one I see next Tuesday is one year older than I am (he's 52) and was the first to do DEIP in the Dallas area... so....

    Renn - Thanks so much - You are the best with pep talks, and we often need them!

    Psalms - I whole heartedly push for exercise... If you have dogs, commit to a walk with them each day, or down load a trashy book onto your ipod and walk the block each day... it makes ALL the difference in how you will feel.

  • Just_V
    Just_V Member Posts: 436
    edited August 2011

    ok - so I was worried, too, that I may be too thin for DIEP but found this...and since I have a BMI of 23... whew!.. Let's hope I have good fat distribution!

    I've spoken to several ladies recently who have had the same misconception about DIEP flap surgery. They were scared they were "too skinny". The truth of the matter is that you don't need to be overweight to be a candidate for DIEP flap surgery. What matters is the distribution of the fat that you do have. Unfortunately that can't be determined over the phone. Sometimes it can't even be determined by emailing pictures.

    I can say that we have successfully performed DIEP flap reconstructions on women with BMI's of 20 and even less.

  • specialk
    specialk Member Posts: 9,262
    edited August 2011

    V - my scarring sounds like it is in the exact place as yours below the nipple and above the incision line in the IMF.  That area was excised three times and now shows scarring but my PS has not said anything about it.  It is more noticable with the new expander back in but I don't care what it looks like, only that it works.  I hope you see the other PS's and if nothing else they can more fully explain the situation.  I hate it when docs just make a statement and do not chat with you about it, explaining the ins and outs.  My PS is very talkative, often about subjects unrelated to surgery!  And I have extra fat to loan if you need some!  Actually, there is also a BCO member that went with a smaller implant and did fat grafting over the top, I wonder if that might be an option for you?

  • Lifeafter
    Lifeafter Member Posts: 298
    edited August 2011

    LOL, SpecialK! Why don't they start a fat donor program. Like a bloodrive except it's lipo!

  • specialk
    specialk Member Posts: 9,262
    edited August 2011

    I'm there!  My PS will do fat grafting and I have a bony chest so I have some hollows in the uppermost area where breast tissue was removed.  I love that I get a bonus of lipo to fix that problem!

    Can you imagine if there was a fat drive?  If we could figure out how to do that we would be rich!!!

  • chickadee521
    chickadee521 Member Posts: 423
    edited August 2011

    I tried to read all of your post to see if anyone had what I had going on.  I don't think so, but if you do please speak up.  I feel so bad for all of you that have been having trouble with your expanders.  I am having my right expander replaced Sept 2 (as long as pre-op blood work shows my post chemo counts have rebounded enough).  At my last fill I sprang a leak.  I can laugh about it so don't feel bad if you are laughing.  I am not trying to go huge, I was an A before and wanted to be a small C.  My PS, who I really like, over fills about 100cc.  I don't know what did it, if it was the over fill, or a malfunction with the expander, but I believe I lost most of my overfill .  So I am about 100 cc bigger on my left then the right.  My DH says you can't tell in most of my shirts so I have really just been rolling with it.  It did stop leaking, but now my PS says I can't get the size implant I want.  I did not go through all of this to settle so the expander is coming out and being replaced.  Sure hope he can get something in my at the time of surgery so I don't look too lopsided!!!

  • Kyta
    Kyta Member Posts: 273
    edited August 2011

    Hi chickadee - I'd like to hear more from you. What size TE do you have and how over-filled were you? I have a 300cc TE. As of today I now have 340ccs on both sides. PS says once I decide I'm at the size I want the implant to be (I'm thinking 1 or 2 fills max to get to that size), that she'll continue to overfill. She likes to have the TEs up to 50% larger than the implant size. So if I like the 400cc size in TEs for implant size,  she'll continue to at least 500ccs and preferably more in TE fills. She said that over-filling is no problem, but after reading your post about springing a leak, I'm a little worried!!

  • Kyta
    Kyta Member Posts: 273
    edited August 2011
    Michelle and vhshea - I asked this Q awhile back but don't think I heard back from you (my memory sucks though). I'm still curious so copying the earlier Q: I've wondered why some women with TEs/implants also have flap surgery. I thought the whole point of doing the TEs was to expand the skin enough to accommodate an implant? 
  • Rennasus
    Rennasus Member Posts: 642
    edited August 2011

    Mich_M...I can't speak for the others, but in my case, I had 3 surgeries on my incision line (due to delayed healing) and I lost skin in the process. (I was not large to start with.) And then I lost my right TE. (Wish I could say it just fell out and I lost it at the store!) Bottom line: I may now need flap surgery because we're not sure I have enough skin on my right side now. (My lefty is A-OK.) MAJOR bummer! I am still holding out hope that my PS can work some magic with me.

    Chickadee... what were the signs when your TE leaked?

    PS Sign me up for the fat drive please. I am more than happy to donate!! 

  • Just_V
    Just_V Member Posts: 436
    edited August 2011

    Mich_M - Renn and I sound like sisters (guess we all are, in a way)... After removal of my infected TE, the scarring of the skin caused the skin to no longer be supple enough to stretch.  The flap surgery, in my case anyway, is really to harvest skin from a donor site.

  • Kyta
    Kyta Member Posts: 273
    edited August 2011

    ok I hear what you're saying but still don't quite get it. If you took a longer time with the TEs and filled less over longer periods, would the skin not continue to expand? Or is your PS saying he/she can't expand the skin because of scarring or other issues?

    p.s. I'm with Ren - I also have some fat to donate for the drive:)  When this process is finally over and done with and I have implants, thinking of asking the PS how much she charges for a tummy tuck…..sometimes I regret not going for the DIEP procedure so I could have had a 2 for 1 deal.

  • chickadee521
    chickadee521 Member Posts: 423
    edited August 2011

    Rennanus-My last over fill was on a wednesday.  I had chemo the next day and when I got home from that I showered and looked down and was like "huh, these don't look the same size anymore".  Called the PS and went in on a Friday and he put about 60cc more in until they were the same size, but by the following Monday they weren't again.  His explaination, and I buy it, is that there might be a small hole in the fill port and when the expander hits a certain pressure it leaks until under that pressure.

    Mich_M - Not sure what size expanders I had put in.  My PS said about the same thing as yours in that he told me just to say "when" and then he would fill me 2 more times after that.  I was getting about 60cc at a time.  So I said "when" at about 400cc.  The first overfill went OK as far as I remember.  It was the 2nd one, to 520cc, where I noticed the leak on the right.  I really don't think it had anything to do with the overfilling.  I think it was just a fluke.  So now I am 520 on the left and if I had to guess a little under 400 on the right.  He said he could get me a little under 400 on the right with the implant, but if anything went wrong (like it was too tight in there and I didn't like how it looked and wanted it fixed) that insurance would throw a fit.  No sense in taking short cuts at this point in time.  I deserve to get what I want right :) 

  • Just_V
    Just_V Member Posts: 436
    edited August 2011

    Mich_M - Before my TE was removed, the skin under the nipple to the top of the incision (in the fold of the breast) had not fully healed - and we were not sure if it would or would not make it.  then my TE was removed.  The skin then did finally heal but with a lot of hard scarring that is not at all supple - no give in it at all. 

  • Rennasus
    Rennasus Member Posts: 642
    edited August 2011

    chickadee thanks for explaining how one would know if their TE was leaking. I have often wondered! I'm sorry that happened to you. And yes you absolutely deserve to get what you want!

    Oh how I don't love being on the TE Trouble Train.

  • psalms91
    psalms91 Member Posts: 93
    edited August 2011

    Special K - THANKS11 That sounds like the drink, however i will look into V8 infusion drink.

    Michelle_ I totally agree with you having some control, gives you a sense of strength

    V- Thanks for the tip to down load a INTERESTING book, I just love it and i will do that  and start walking.

    I have gone for a second opinion and i was very satisfied with him, he has giving me the hope that within 3 months i can start the reconstruction process or the DIEP, which is about 10 hours long!!! yikes

  • Lifeafter
    Lifeafter Member Posts: 298
    edited August 2011

    Hello ladies, it's Friday!  It feels so good to be back at work and to have a Friday to look forward too.

    I'm getting my hair done today! Laughing

    Michelle

  • Just_V
    Just_V Member Posts: 436
    edited August 2011

    PSALMS - check out the DIEP thread - I am practically living there ... http://community.breastcancer.org/forum/44/topic/762703?page=7#idx_183

    Also, in that thread, I posted a video from Beth Isreal on the DIEP surgery - very informative and made it less scary for me...  http://www.orlive.com/chp/videos/breast-reconstruction-deep-inferior-epigastric-perforator-full-surgical-version-?GCLID=CKqhru%2DIq6YCFYbb4Aod%2D2itmg&UPDATEAPP=false

  • NatsFan
    NatsFan Member Posts: 1,927
    edited August 2011

    Mich - Just happened to see this thread and read your question about why some women have t/e and flap surgery.

    I had a skin sparing bmx with t/e placement and a delayed DIEP.  They placed the t/e at the time of surgery so that the skin that was left on the chest wouldn't heal flat and stick to the chest. The t/e held the skin out and allowed it to heal in a roughly boob-shaped way.  I only had 2 small fills because I wanted to go smaller than the "original girls" were.

    Hope that answers your question! 

  • Kyta
    Kyta Member Posts: 273
    edited August 2011

    Hi all…..thanks for the info re TEs and flap surgeries.. Natsfan - I understand your need for a temp TE for a delayed DIEP.

    Chickadee - sounds like we're similar in terms of size…I'm also thinking 400ccs for TE size will be the right size….hoping my couple of fills afterwards will go well.

    I had a fill yesterday and was in pain last night and today…as long as I don't breathe too deeply I'm ok:) I keep telling myself this is temporary.

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