TE TROUBLE
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noon - hopefully it will heal. I have been in your shoes, so I understand your feelings. I am going to give you a cautionary tale and hopefully, some inspiration. I lost my TE after two surgeries to try to save it when an area of unhealed thin skin caused problems stemming from necrosis after the BMX. The TE, which left a crater when removed, was out for 7 months while I went through chemo. At that point the TE was replaced and I had no further issues - my fills were very small however so as not to stress the skin and cause inflammation. I was fully expanded and exchanged to 600cc and 650cc silicone implants (chest wall anomaly - two different size implants). Two years later, after a repair and replacement of allograft bi-laterally - which should have been routine, that same area tore open and would not heal, despite two more surgeries to repair, the left implant was removed in May. I now have a 650cc implant on the right (the cancer side) and a crater on the left - this has been the situation for 7 months. I am telling this story for several reasons. First, to let you know that there is hope for a normal recon experience after losing a TE. Time heals for most of us. Second, do not do any more large fills. You have thin skin that has proven to have problems healing - large fills stress that skin too much. Third, you may need to re-adjust your expectations as far as final size. Staying on the smaller side is more comfortable, and less problematic for those of us with skin issues. Fourth, don't revise unless you have no other choice - it is risky when you have had a challenged path of reconstruction.
I suggest that you try to consume as much protein as you can - aim for 100g a day. Also maybe add some bromelaine and zinc supplements to aid in healing. Hang in there.
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SpecialK thanks. Yes, I think it was those couple larger fills that did it. (75cc and 100 cc) Slow and steady wins the race, right? I think I need to stay small, under 50cc. When I had those smaller fills there were no problems. And yes, removing the TE has left a crater.
I had no expectations with my final size other than to be close to where I was naturally. (44C, which was very average looking on my large frame. ) I was shocked when my PS said to get to that size I'd have to get to 600-650cc. She wasn't pushing that size, just saying if I want to get there that's how much I'd need. I have always known I can throw in the towel at any time. In fact, originally I was not going to do reconstruction at all.
I am taking several supplements per day, in addition to a protein shake. Trying to drop 60 lbs in a healthy way without putting too much stress on my body while its trying to heal.
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Noon - so sorry to hear about your on-going issues. Special has some good advice, but I'd drop back and fill only 25cc when you get to filling again. I'm sure you've read some of Sandra's saga and Moonflower's too. Looking at their outcomes, there is definitely hope, but I know this is hard - particularly this time of year. Sending gentle hugs.
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noon - yes, slow and steady wins the race - I had 25cc fills weekly, and in spite of the skin issues initially, did manage to reach 600cc on that side - it was a long process at 100cc a month, but I was just happy to make progress. My word of caution on staying smaller though has more to do with the integrity of the skin that is damaged by all of this repeated surgery, and the stress on, and potential damage to, the allograft and skin with larger size. My allograft was failing and perforating and that is what necessitated the repair I had in March. If I knew when I had a TE what I know now, I would have stayed smaller, and I might not be in the situation I am currently in.
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So far I have not read ANY of this thread, because I wasn't going to need to. That wasn't going to be me. ;-) Tomorrow I'll be reading back through the older posts.
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noon so sorry you have to be here! Crap. I always hope for good outcomes but know it sometimes doesn't go according to plan. Sigh.
If you PM me I have a perfectly good large prosthetic I can send you for the short term. Until you get it all done. It might be the right size for you. Because I had that d*mn hole where I used to have a breast for 2 years off and on. ( quite literally! ) i actually only wore the prosthetic a couple of times for easy things. I preferred the poofs that came with the Amoena camisole. I could adjust them as needed up or down. The Amoena comes with a set of 2 poofs. so that one can be half way filled till I had one filled Up. And the other completely filled for the hole.
Hugs and Much love
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Thank you! I have the Amoena camisole. I wore it one day this week and discovered IT DRIVES ME CRAZY! I get SO darned HOT wearing anything under my clothes. This is so frustrating to me. I have to be very careful what type of material my tops are made with or I will break out in a heavy sweat 30 seconds after putting it on. It seems that just plain 100% cotton, LOOSELY fit works best. But still, the fabric falls into my dent, accentuating it. This is a new phenomenon since my BMX back in Sept. Chemo-induced menopause didn't even have this effect on me. Only the surgery. Does anyone else have this problem so many months out from surgery?
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i still get hot flashes at least a couple times a day but at least the cold wave that preceded it isn't as bad. LOL I'd cover in everything I could find and then sit and freeze for an hour. After that came the hot flash and I'd remove the blanket, throw, sweater, and shawl..... LOL
Sorry the Cami doesn't eork. The poofs should still work. You may have to pin them. Have you tried a softee? It's way looser than the Amoena and it's cotton. It has looser poofs though. Softee.
Much love
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I had exchange surgery on my left side on October 31. Still flat from TE removal in June on right side. I've read about many people having rippling and divots on their squishy side. Has anyone had points--like the corner of a plastic bag sticking out? The point moves around and it sometimes more noticeable than other times. My ps said "well, you did want smaller implants" and said that she would do some fat grafting on that side. My skin is very thin. My right side has a lot of skin and fat so we've decided to do fat grafting on that side.
Any advice is appreciated!
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Lynne - jump over and read the latest page or two in the Exchange thread. The discussion is all about thin skin & wrinkling.
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thanks minus two. I've been pouring all over those boards looking. Maybe I should post my question there too!
Here's another weird thing going on with me. My right side is flat. Have been noticing some pain on that side. Attributed it to sleeping on my right side (to avoid squishing my new squishy on the left) also noticed some arm/shoulder pain that wasn't there before. Last week I noticed a hardening under the skin on my right (flat) side. Talked w np Tuesday. Said it was fine as long as no fever And skin looked good. Everything looks fine. Over the past few days I have developed a really large round lump. Like half of a large grapefruit large. I called Friday but no one was in the office. Today I noticed that it is swelling into my side and I hit it with my arm. If I had a TE in there I would suspect infection, but am empty
Have a million worrisome thoughts running through my head.
Am planning to call plastics and maybe even my breast surgeon tomorrow. In the meantime........
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You can still have a seroma or an infection without a TE in there.
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lynne, what noon said. Keep checking your temp. If you get a fever go yo emergency room. Don't want to scare you but don't ignore symptoms like that. Go tonite if any fever or it grows at all. Use a marker to see how much it expands. Good luck and much love.
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Thanks ladies. I will keep checking.
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My infection two weeks ago was horrible. Because I have little to no feeling in my chest, I had no idea there was something brewing. Realize if you had normal sensation, you would FEEL an infection long before you see swelling. By the time my pecs were starting to hurt I had a 103* fever and a raging infection.
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That's such a good point, Noon! I have zero feeling in my chest! Hoping this is something they can take care of tomorrow morning!!!
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Lynn - good advice - watch for the fever. Since you had a BMX it could be Lymphadema if fluid isn't moving.
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Thanks for your advice ladies. It was a seroma (how I got one 6 month later no one knows) and the radiologist pulled 400 cc's of bloody fluid out. My ps secretary called me afterward and told me to wrap myself in an ace bandage so that I don't fill up again. She also mentioned that the doctor may need to go in and "clean things up in there" since the radiologists do not put drains in place.
I was scheduled for surgery on Friday for fat grafting and she is keeping that time open for me. Apparently my doctor needs to think about how she wants to proceed. And the secretary will call me tomorrow.
I'm hoping that I do not need to get "cleaned out" and if I do it would not be under general anesthesia.
Anyone have seroma and "cleaning out" experiences?
Thanks
Lynn
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Sorry to hear that. Its not fun!! Yes, I had a seroma cleaned up. It was under anesthesia. Hopefully the radiologist sent the fluid for cultures so they can see if you have an infection or not.
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thanks Noon! Heading in this afternoon for cleaning and having a drain put in. SO not looking forward to having a drain again. And SO not looking forward to general anesthesia.
I appreciate you taking the time to answe my questions
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This was the shortest time my drain was ever in! Only 5 days and it hardly had any output at all the whole time. They're just SO very annoying, and my skin is always hyper-sensitive around the drain site. Sorry you're having to deal with this. Hang in there!
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hiking of you today lynn. Hoping everything goes smoothly!
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Hello ladies and Happy New Year. I'm hoping this year is a year of healing and less pain. I am finally healing up but the pain from the scar tissue forming is crazy. Any advice on exercises to loosen up the scar tissue? I'm hoping and terrified of going back to work. I have an appointment with PS on Wed. to see if he is gonna release me to return to work. My pain is still pretty high and I still can't pick up heavy things or even open jars. I'm so frustrated with what this cancer has taken from me.
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purple - good to hear from you and to know that you are healing, but sorry about the scar tissue and resulting pain. I am wondering if some gentle PT would help, to stretch - also some gentle massage to soften any already formed scar tissue? Ask your PS. When I did PT for lymphedema they had me do a handcycle for five mins front direction, then 5 mins in reverse, and then a series of stretching exercises to "open" up the chest and stretch all of the muscles, kind of like yoga would do - I had expanders at the time. It might help. I can PM you the exercises if you would like.
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Purple I finally started PT one year after surgery and 8 months after rads - when radiation fibrosis caused increasing pain. Special is right, My LE therapist has been able to stretch & massage & release the scar tissue and give my arm full range of motion. I was astounded how far the "roots" of the scar tissue traveled and how the LE "rode" on top & aggravated everything. I still have some pain but nothing like the last year. Do you think the 'opening jar' issue has something to do with neuropathy? I couldn't tell what chemo you've had but hand (& feet) problems are definitely related to CIPN. Glad to hear you've had some improvement.
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Purple, so glad you are finally on the mend. Ask your PS for PT..i had 8 and a half weeks of it because I was in such bad shape. I did the bicycle fir the arms too. Every week. It really helped my rotator cuff pain that manifested halfway down my arm. Otherwise our onc can recommend chemo rehab and basically do the same thing. Hugs and much love.
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HI everyone. I never expected to be here......but I am..... It's hard and has been a tough road. A little of my history is that I had Nipple Sparing Double Mastectomy w/ Allomax placement and TE's filled with 60cc's upon surgery date on 9/23/14. I felt GREAT right after surgery and then had a drain not draining properly so I needed a NEW drain due to a huge seroma placed in October. A week later I felt very sick, fever, entire left side was swollen and red, and went into the hospital for an admission due to having Cellulitis and Lymphedema. I stayed for 7 days away from my 3 children (12 year old girl- turned 12 yesterday/ and boy & girl twins that are about to turn 8 on 2/4) and Niece who is my angel on earth to take care of me. I came home, never quite felt the same......been tired, losing hair (I have lupus which could be the cause of my losing hair because I have something foreign in my body) and just not "myself" along with severe stomach aches, chest pain off and on, and just BLAHHHH........
I have gotten two fills after having my drain removed at 45 days. I went in last month and a half ago for one fill of 50cc's and then 2 weeks ago was 50cc's. I got up to 160ccs total.....had TINY lumps appearing. I was flattered.
They were a little out to the sides, but I loved my little lumps. lol. they were MINE and I had adopted them. I was looking forward to the next fill (tomorrrow- 1/20/14) but that day won't come for me....I awoke yesterday and had severe pain in my chest and where my lung is and looked inside my genie bra to realize I am FLAT! My left side had ruptured and deflated! The 160cc's of saline had leaked out and was reabsorbing into my body. 
I have MAJOR scarring on my left side and during my hospital stay I was told that expander would have to come out, but I begged for them to leave it for one more night and let the Vancomycin work in my body, since it had only been a day and a half and it starts to really work at day 3. My surgeon listened and was gracious and let me TRY to keep it. I did good! Hit my peak with meds and the cellulitis began to get better. That stuff is PAINFUL!!!! Blew out EVERY vein on my right side! I almost needed a Picc line because I had NO veins left to use. But got lucky and got better right in time. I called my surgeon and she said tomorrow is my appt and come in and we shall look at lefty and she will confirm the rupture (which is 100% visible, but she'll do some things to prove it and get insurance to say YES to taking it out and going to the next step) and I will figure out what to do. My question was "can I go direct to implants?" she said ABSOLUTELY! That would be best! I have too much scarring that FEELS like I still have 2 drains on my left side! It's insaine, and underneath my incision I have a huge hard lump. I have Capsilar Contracture....so that will all have to be removed during surgery and then I will need pocket work done because right side leaps up (not pretty) when I so much as move a single bit! Very jumpy that girl is! LOL
So she will stitch the top so that my implants don't decide to jump up like that. The unfortunate thing is: I had planned on going to 450-475cc's of the anatomical implants, but have to settle for MUCH less: roughly 325-350cc's because I have a small bony frame and she only got to expand me a tiny bit.....so I have to get much less than I wanted originally. I just have to deal with that, I suppose, but will end up being small like I was before, when I had hoped to be bigger.....but......at least I won't have to suffer anymore becasue the TE expansions were VERY painful especially on left side (bad side) and I believe the rupture could've been caused by the amount of scarring squeezing the TE from my infection. I won't suffer, but this next step will be VERY risky (due to my having systemic lupus) and could reject the implants like I have the TE's and I could lose it all, and it will be quite painful with the amount of cleaning me out she has to do with all the cutting and nipping to perfect her masterpiece on my chest. I'm trying to be prepared and keep an open mind about all this, because breaking down and being upset is not an option.
I am shocked that my TE just ruptured like that and the amound of chest pain (near my heart) is horrible and never goes away, my left arm is heavy and hurts (along with shoulder pain) and then my lung hurts too. I told my surgeon about the zapping pain I have but she wasn't concerned, so I am just placing heat on that side and waiting it out until tomorrow. Is it NORMAL to have pain once the TE ruptures? I went to bed and had a lady lump and awoke to NOTHING......I can literally FOLD IT OVER?! It is 100% gone. and seems to have sucked my skin down so that I can feel every piece of the Te and can feel the port popping out next to my nipple (almost like taking the air out of a baggie and then feeling the item inside)......very strange!
I will be able to let you know more tomorrow....Just felt like FINALLY I can find SOMETHING and people with experience who had this happen! I've searched the internet since yesterday morning when I checked my genie bra only to find a cold left side lifeless and flat, while my right side is so nice and a little less than an a cup yet still filled up and doing well. :~/
Glad there's a place for me to BELONG and I don't have to feel strange about wording anything.
Bless you all and I pray your journey gets better. This certainly is NOT expected, but it's happening, so I have to simply know that God's plan is larger than my own strong will, so I have to allow myself to be open and simply go along with it, because I am nothing without His guidance. I pray that all of you get well and find yourselves with great results once you're able to get through this. I look forward to reading as much as I can about ruptures, tears, and going FLAT.....Thank you for making this area for us going through this to come to. Marie J Mello
(part of September Surgery Sisters 2014)
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MarieJune!!!! What the heck!!!! You and I seem to be on similar paths all along. So strange!
When my first TE ruptured back in October it did not hurt but I did develop an infection. Then over Christmas I developed a HORRIBLE infection. That one DID hurt. However, because I have no sensation, by the time I felt pain it was from extreme swelling into my back and above my collar bone, and I was running a 103-104* fever. Three days of Vanco and Gent before I could have surgery to remove the TE and clean everything out. I'm flat on that side now. The other side looks fantastic.
I have to wait 4 months then in April I can try again on the bad side. I thought about going direct to implant. The largest my PS could get in there right now is about 350 and I'm a bigger person than you. At 350 I may has well be flat. I can't wait for April to get here so I can try the right side again. But we will have to take fills extremely slow as my thin skin does NOT l like it. If I have no problems then I'm not looking at exchange until September. Not happy about it, but not much I can do about it either.
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Aw. Marie. So sorry. But you are in the right place for help. We all do understand. It sucks but you get through in any way you can.
It's likely that the TE might have been pierced by the fill needle. It happens. But given that you are having such a hard time it's more likely to be contraction. Not that knowing why really helps. Hugs.
In the meantime, there may be Insurance offered that cuts the cost of replacement farther down the road for size. You may want to consider that. It's different than the coverage for revision due to CA. My P'S had one for basically half price. But for size I'm not messing with mine. I know too much can happen.
Also ask your PS about saline vs anatomical and if your lupus would prefer one over the other? Mine are saline and very soft but I can wear my clothes without padding.
Hope some of this helps
Much love
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noon, I know it's not fun. I was lopsided with an empty hole on my left for almost 2 years (2 trys) my right was only half filled for all of 2 years. It's not fun but you get through it. Hugs
Much love
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