TE TROUBLE
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miasanta2007 - Charles Cox is all about numbers and percentages. He does a lot of international speaking and participates in a lot of studies - he keeps data on all of his patients going back 25 years. He showed me a slide show on NSS MX before my surgery and I was aware that there was a 20% risk of necrosis. I was not at all surprised and neither was he, and I don't smoke either! My PS was not surprised either and he has been very good at discussing any and all subjects and scenarios with me. I feel lucky about that. Most of my care after the initial BMX has been by the PS as well. It is so funny that you live so close - we have probably walked past each other at Wiregrass - lol!
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Hi all
Getting caught up on posts. Sounds like there are too many of us that have had problems with TEs but good to hear that many of you are doing relatively well, and on your way to full healing.
Ren - congrats on getting a date for a new TE!!! I'm sure it feels like Dec 1st will take forever to get here, but before you know it, it'll be surgery day.
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Mich_M: Tks! I thought I would be getting a new one in October, so I was bummed that i had to wait until Dec. 1! But you're right, time goes by fast. Sigh.
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ren - a new TE from Santa! Time will zoom by for you I hope!
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Everyone, sing along: "All I want for Christmas is a new TE!"
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Thanks for the laugh, Renn!
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Hi all, tomorrow is my first ever fill - I am nervous. It is like I am going on a first date!!!
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SpecialK - good luck today! So excited for and envious of you!
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Hi Ladies, I am now officially a member of the group...I had my TE removed yesterday. What I thought was the muscle showing through the hole was actually the expander and when I saw PS yesterday morning he scheduled me for surgery that afternoon. Last night I was pretty depressed, but today I am hopeful again. I'll have a follow up with him next week and discuss my options, he seems to think I still am a candidate for having TEs placed again, although hard to believe it after all I've been through this past year. In some ways I'm relieved to have the worrying over with. My big questions for those of you with one TE removed - how do you deal with this lopsided-ness? My other side is fully expanded (about 650 ccs) and the side that was removed is quite concave. I guess I'll visit a mastectomy shop and get some kind of form to put in that side - how long does it take to heal enough to wear something like that? I'll have to resurrect my loose and ruffly shirts from last year too...I guess. Ugh! Thanks for this thread which has really helped me get through this past week.
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Hi ladies, I hope everyone is as well as can be.
I posted in the June MX thread, I've developed A LOT of fluid around the area of my left tissue expander. I had some before. Not a lot. My doctor said it was because there is a pocket between the skin and TE. It's common for fluid to get in there but now there is ALOT. I have an appointment tomorrow afternoon. On the right side where he took the infected TE out, it has developed quite a bit of scar tissue. I having some pain inbetween the left and right but I'm thinking its nerve regeneration again but it is really uncomfortable.
Anything I should be asking the doctor?
Michelle
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Yea, so I knew when I saw yet another yellowish brownish spot,that leaked, that there was trouble. Friday I will have latissimus flap surgery and the expander taken out on the right. I'm seriously considering having the left one removed also, just so I can (hopefully) take a break from all this, go back to work and have a life for like 8-9 months, Then I will think about reconstruction once I'm all healed up and energized. I am devastated and exhausted, emotionally and financially. Any thoughts?
SpecialK: So happy for you! Best wishes & ((hugs))
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jblcsw10 - At some point when you are up in this neck of the woods you might want to go to the Hope Lodge run by the American Cancer Society that is next door to Moffitt. They have mastectomy bras and forms for free if you are being treated for BC. My insurance did not cover both recon and mastectomy stuff. Apparently either you are one or the other to them - even though all of us ladies fall into a place somewhere in the middle!! Anyway - they are very nice there and they gave me a "real" form (they usually cost about $200-300) which fit in my bras. Because I only had the surgical fill on the right I could deal with a smallish form. They have some different sizes, but they are totally free which is nice for a temporary situation. They are infinitely more comfortable than the makeshift stuff I had been using.
My fill was fine today - only 25cc in the newly replaced side. As with most everything else, the anticipation is worse than the event. Little sting on the way in, but that is it. I was actually surprised I could feel anything. I have pt tomorrow so if I am at all sore they will work it out for me.
mrochon - are you massaging your non-TE side? The pain sounds like it could be nerve regeneration - it is little zing-like shooting pain? That is what mine feels like. You are still fairly recent from MX but I am glad you are going to have things checked.
miasanta2007 - I know how you feel - it sometimes seems like it is never going to be all done, I am so sorry but I hope the flap surgery is the best answer for you. It is hard enough to have BC but then when we develop problems that continue the process it becomes an emotional (and financial) challenge. I wish I could say something that would help other than I am thinking of you and certainly hoping for the best.
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SpecialK: YAY on your first fill! Such a common occurrance for so many others on BCO but for us here in TE trouble-land, it's a real milestone! Congrats! ;-)
jblcsw10: I had my right TE removed in July. Along with removing it, I got rid of the worry. So I know how you feel! It is certainly possible to have a new TE placed again but you will have to wait several months of the tissue to heal up first. Mine was removed July 6 and my next surgery is December 1. My other side was filled during BMX surgery (just like Special K). I have 350ccs on my left side (so not very big) and nothing but alloderm on my right side. I did not buy a prosthesis. What I DID buy was a couple of very padded bras that do NOT have underwire. They hold up under a shirt, and so I look even (unless you hug me! Then you would feel there is nothing on the one side). I've been making do that way. Danskin makes a great sports bra that closes in front and really retains its cup shape. I bought it at Walmart.
mrochon: Are you leaking fluid? Is your incision line open? I too have a lot of scar tissue on my right side where I was "nursing" the TE for many months and couldn't use my arm. The scar tissue is so hard it feels like bone! I am seeing my PCP today and getting a PT referral. That is what I would ask your doc, how much can you use the arm and can you see a PT. I'd also want to know if he thinks you have an infection.
miasanta2007: Oh I totally get your frustration! Even tho I have to wait 3 more months for my new TE, at least I can exercise and get on with my life without dealing with oozing incisions or emergency surgeries!! Good luck Friday with the lat flap on the right. As far as your left side, you can just leave that expander in there until you decide to deal with it. As long as that side is fine, I personally wouldn't remove it! My left side has been filled since FEB while I have dealt with my troubled child on the right side. I won't be starting fills until spring. So my lefty will be in there for a year by the time I get to starting fills. Just something to think about. Let us know how it goes after you are home from lat flap!
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renn - I know! I should celebrate! Even weirder, the fill was only on the troubled left side. Poor righty still only has the surgical fill. It may be my imagination but now the left looks bigger than the right. E-gad! Maybe next time they will both get some.
miasanta2007 - renn is right - the TE can just be in for a while. My right has been there since Nov. '10 with no fills. Just hanging out being a TE, minding its own business.
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Thank you ladies, I didn't think about that I wouldn't have to get lefty filled til "whenever"..gosh what would I do without you
? Lefty can just hang out and mind it's own business? awesome!!! And SpecialK, I've kinda heard of Hope Lodge too, but can you just go in and ask them to help you with bras, forms etc? I know it's for "out of towners"... also I'm not in any treatments except for plastic surgery recon stuff.
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I'm not leaking fluid. My left incision looks good, it's closed and pretty thin and faint. My right side i think the incision looks ok, the scar tissue is really building up around it. So I can't really look at it. It does feel like bone! I have no idea how to massage it. Do I just push on it and rub? It's hard! Ugh. I'm seeing a physical therapist but they are only working on mobility. The guy doesn't do chest massage. I told him it was mo big deal there is nothing there remotely sexual! lol He said it doesn't matter, they'd have to have a female in the room. It's too much work for them. So I need to find someone who specializes in that? What if I can't? What if the scar tissue doesn't break up? I have had almost full use of my arms for a month. I can get them up straight at a 180 degree angle and can move them past my ears for a few seconds. My grip strength in both arms measures at 50 on the grip tool.
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mrochon...you are doing better than me. I can't get either of my arms behind my ears; my right arm I can only get to my nose. I have work to do! I don't know how to massage the boney scar tissue either. My PS said not to worry too much about the scar tissue. I think during exchange he cleans it all out. Sounds painful. I'd rather try and help things along if i can with massage. Once i learn how to do that from a professional! Will keep you posted.0
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mrochon and renn - I just did it on my own (the massage) pretty much like self-exam but with more pressure. My PS told me to do it as soon as I could without experiencing pain. I just would do it when I was relaxing in the evening and watching tv. The problem with too much scar tissue is after-surgery pain for us and lots more work for the PS when they put the TE back in.
miasanta2007 - Hope Lodge gift closet is for anyone who needs the service. Staying at the Hope Lodge is for out-of-town folks. They knew I was local, not a problem. I would just give them a call (813) 490-4700 and ask whether or not you can come to the gift closet for a mastectomy bra and/or prosthetic. You can have two items - whether it is a hat and wig, or whatever. Explain you are in the middle of reconstruction and have experienced this set-back. They are really nice - you have to fill out some paperwork with basic stuff, like your doc's name, so they know you are legit, but they give you the stuff right away. As I said, it was really helpful to me because my insurance would not pay for a real prosthetic.
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Just came back from my P.S. My left breast is hot, red & infected. He may have to take the T.E. out. At this point, with as bad as it hurts, I'm tempted to have them both removed and just use prothesis'. I was supposed to have a PET scan tomorrow and my chemo port put in but if this infection doesn't go away I will have to reschedule everything.
When I first began this journey my main concern was having boobs again. Now my main concern is no cancer and no pain. My left boob looks like a large B cup except for the areas that are protruding out like some sort of alien and the right boob is maybe an A cup. Quite a difference from my real size D's.
I really feel for the ladies on here who have been doing this for years. I was DX the end of April, had my surgery Aug 11th and I'm already so over this.
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Chiluvr: Sorry to hear you are having problems - I've had moments this past year when I felt exactly the same way - just take this thing out and let me live in peace, already! Renn: You mentioned possibility of having to wait awhile to get another TE and that is just fine with me. I am hoping the wait is at least 6 months, honestly. I just want to get on with my life for awhile. My problem is I live about 1.25 hours away from the PS and for over a year have been driving back and forth sometimes weekly, every other week, its getting old. We've all been through a lot of frustration and things not working out as we thought they would. I hope we're at least getting some character built through all of this.
SpecialK: Yea! you got the fill, it will never be as hard again. Are you going to be going weekly? Thanks for the info on Hope Lodge - I will look them up when I'm ready. I am reading this stuff about massaging too so I guess the PS will tell me about that. Not quite ready for that since TE just came out yesterday, but I have to say I am feeling really good today and very little pain or discomfort. I do have a drain which is a hassle but even that is not as bad as the initial experience with the BMX. Today I wore a baggy shirt and thought, gosh if you didn't know you might not even guess I don't have a foob on one side. I really do feel a huge relief having the TE out and not wondering what is going to happen to me next.
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Hey! What is with all of us Florida girls with the problem TE's? We may need to have a meeting!
chiluvr - sorry about your problems - it is a bummer to have to re-schedule too. Just pushes back the stuff you still have to get done! There is some comfort in having the problem TE's out - you can just chill. That being said - it is a pain to deal with prosthetics. I had a "cranial prosthetic" on my head, and a "breast prosthetic" on my chest. Too many pieces and parts to keep track of, none of them comfortable!
jblcsw10 - I am going next week, so it looks like weekly for the moment. Maybe I will stretch it out a little when we get them evened up in size. I have to say, I am a little sore right now, but nothing major. I have to say also the drain removal from PS was the least painful one I have experienced. Very gentle. I had four after BMX and all around the drain sites I had a horrific allergic reaction to Levaquin. They pulled my drains after a week just so they could put me on Predinisone to try to control the reaction. They yanked those suckers out. After AND was the worst - the drain is up in that underarm and it feels like a cattle prod when they pull it. Like an electric shock up my side, through the underarm and all the way down my arm to the fingertip. Probably the most painful experience I have had in the whole journey! I am glad you are relieved to have the offending TE out - it is stressful to keep dealing with it.
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Hi ladies
Just trying to get caught up again….so many similar, yet different stories. We're all in different stages of dealing with TE related issues, and I can so relate with your posts.
Ren - I can understand your frustration with having to wait til Dec for your TE replacement….totally sucks. But what can you do, besides hope for the best and go with the flow.
SpecialK - good that your fill went well. Was it your PS that said only 25ccs or was it your preference? Will you go for a bigger fill next time or keep it slow and easy?
jblcsw10- sorry you're joining our little group. When my one TE was removed, I used a prosthetic that I had the year before (originally I had a uni mx and had a prosthetic for 1 year before having the other side removed and TEs put in). It didn't quite fit right, but with loose fitting shirts it worked ok as a temporary solution.
miasanta2007 - It's too bad that you had to have your TE removed. I agree with the others, that it's not a big deal to leave one TE in for an extended period (I've had my right TE in since Nov 2010).
chiluvr1228 - hi there…sorry to hear about the infection you have on your left side…my left side was also a problem. I totally get that your focus is 'no cancer, no pain'. Look after yourself.
As for me, I also have some scar tissue on my left side…guess it's not surprising after 4 surgeries. After my last left side TE fill, I definitely felt some pain with the TE pushing against the scar tissue. PS says she can clean it all up during exchange surgery….hope that's true.
Good night all
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Mich_M - It was the PS who said 25cc. That is about how fast I want to go anyway. Even with just the surgical fill mine have always hurt and been uncomfortable. I would rather go low and slow. I have a feeling that when I finally get to the end point I am going to be VERY uncomfortable.
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Congratulations SpecialK!
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Marcia in Bradenton0 -
soccermom4force - Hi! Thank you so much - it was a big moment! I have a long way to go and , as we all know, much can go south in a hurry, but for today it was nice to feel like I am moving forward!
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Special K- I hope you aren't as sore today.
I am getting so nervous for my surgery friday. I almost threw in the towel and went straight to exchange. I just want to be done too. I feel for you ladies who have had so much trouble and feel so petty for being upset over my little problem. I deserve to get what I want so I guess it is off to surgery I go.
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chickadee - I am curious - if you were filled to max capacity and just prior to exchange can they go straight to the size implant you wanted, or does your PS need you with a fully filled TE for a longer time period before exchange? Is that the reason for the TE swap and not straight to the implants?You will do fine with your surgery, and probably be surprised at how brief and easy it is. I had almost no pain with mine. I had the TE removed and put back on 12/21 last year, then cooked Christmas dinner and entertained on Christmas Eve. Absolutely no problems. Keep us posted on how things go for you. Yes, not sore today on the left TE. It just feels slightly tighter - such a new concept after all this time!
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Special K- My PS is of the theory that the TE needs to be over filled by about 100 cc and then left in for 3-4 weeks before the exchange. At my last visit he did ask how fast I thought I leaked out the 60cc we had tried putting in and when I told him 2-3 days he sighed and said that wasn't long enough. I think he thought just as you did to fill be to the max and then have surgery. I wish that was the case. I expect to be good as new quickly and am very happy that you were (wish it had lasted for you!). At my BMX they hyper extended the nerve that controled my bicep. That resulted in numbness in my whole lower arm and hand. It took about 4 weeks for the feeling to come back in my thumb, making it very difficult for me to write, eat, shave, etc. I am hoping since this is a shorter surgery it won't happen again. How long was your surgery?
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chickadee - I thought as much - I think most PS do like to have a stable and overfilled TE for at least several weeks before exchange. Sounds like the right thing to do to swap it out and then let it be. I hope that since they are not removing tissue aggressively they will not damage your nerve situation. I can identify - my AND surgery wreaked havoc on my right (dominant) arm and hand. I had issues with it from the inflammation from chemo as well. PT has really been helping a lot with that. Aside from BMX and AND all subsequent surgeries with my PS (4 of them) have been under an hour.
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Ladies, just a quick update from my visit with my PCP yesterday. He said a build-up of scar tissue is the body's way of attempting to heal during our TE troubles — so not unusual. BUT the body will eventually break down that same scar tissue, and it takes about a year to disappear. I hope to get a jump on it with massage. I am getting a PT referral, PCP said it's important to regain complete range of motion so I don't get frozen shoulder. Can't wait to start!
PS I had mentioned in a prior post that in my pathology report from my TE removal surgery, they found a "epidermal inclusion cyst" in the tissue on my chest wall. And I thought,"So THAT'S why my TE didn't heal!" NOPE. Turns out that is medical lingo for a PIMPLE! OMG!!! PCP said too much tension on the skin coupled with decreased blood supply caused my incision not to heal. He said it was not a rejection. And I did *not* have an infection. He also said the tissue takes months to mature and regenerate; it takes time before all the new cell connections are made and the skin (and scarring) is nice and strong to handle a new TE.
Good luck to all having surgeries soon or recovering from surgeries. ;-)
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