TE TROUBLE
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I read somewhere that if you want to keep your nipples and you have larger breasts they recommend that a person have a partial reduction first to give your nipples a chance to get used to the Lesser blood flow and then go in and do the full removal because then they're accustomed to not having as much of a blood flow and they don't usually die as easily.
But that's one doctors process my doctor wasn't even open to the idea and so I went ahead with nipple reconstruction and had mine removed.
I was too afraid of having the necrosis and more issues I couldn't handle it. I can barely deal with the tissue expanders I'm still thinking of having them taken out, clean up the skin and just use a padded mastectomy bra. I have to decide by this Friday what I'm doing.
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I read somewhere that if you want to keep your nipples and you have larger breasts they recommend that a person have a partial reduction first to give your nipples a chance to get used to the Lesser blood flow and then go in and do the full removal because then they're accustomed to not having as much of a blood flow and they don't usually die as easily.
But that's one doctors process my doctor wasn't even open to the idea and so I went ahead with nipple reconstruction and had mine removed.
I was too afraid of having the necrosis and more issues I couldn't handle it. I can barely deal with the tissue expanders I'm still thinking of having them taken out, clean up the skin and just use a padded mastectomy bra. I have to decide by this Friday what I'm doing.
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Definitely that doctor should be getting your wound swab to determine what's going on in there. You can't just willy-nilly give him a prescription for that cuz it creates a superbug.
You might want to consider talking to another PE and getting an opinion from them on your treatment so far and what's going on. Doesn't sound like he's doing you justice and he's leaving you in a lot of pain and suffering. I would also talk to an allergist to see if you may be allergic to these implants or the tissue expanders whatever it is it's in there I can't remember right now.
I would try taking an allergy pill and see if it helps to relieve anyting something like Reactin.
Your situation definitely makes me want to take these tissue expanders out and just go with us stuffed mastectomy bra.
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Hi Leatherette, thé knuckle looks literally like someone’s finger or knuckle sticking out. It is a very hard lump creating a bump that is pretty prominent. It caused a blister right after surgeryand I have been putting Flamezine cream (as prescribed by my PS) on it and it seems to help with the blister wound. I had a fill and the knuckle is still there. I’m going to the PS tomorrow. I now also have a small area of my incision that kind of opened up. Very small (3mm), so hoping it will heal too!
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Thanks, toughcookie,
I went back this past Thursday, and they removed 75 ccs of my fluid and put 80 ccs in the expander. The PS was very empathetic about the knuckle; I could tell he felt bad. He tried to maneuver it a little to reduce the folding, which did not hurt as much as I thought it would, but it just popped back out He continues to not be concerned that it will push through the skin. Now I don’t go back for three weeks!
My husband is ‘sure’ they put it in wrong, but it seems like this happens to people. And I definitely do not want it taken out and to start over 😳! I may ask my doc about that cream you are using....
Otherwise, the fill was fine.
Thanks,
L.
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Hi Leatherette, they tried removing fluid from mine too and filling it and it didn’t fix the knuckle and they couldn’t massage mine out either. The issue with mine was more the wound than the knuckle itself. I guess my skin wasn’t happy right after surgery, and it rubbed against clothes and caused wound. Of course because I had no feeling I never noticed. It hasn’t since healed, and the cream was for the open wound overnight the fold (anti microbial cream). My wound has 90% healed.
My PS also thinks at this point the fold shouldn’t cause any further issues. I am going to PM you. I have a question about your chemo0 -
Anyone have issues with incision healing? My black nipple has healed. The blister from the fold in my expander has healed. However now, seven weeks post-op, I have a small opening in my incision (a few millimeters), which is delaying chemo. Grrrr
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toughcookie. Im sorry youve got tbise issues. Take real good care if the opening, as it could lead to infection. And then, sometimes the implant had to be removed. Hugs
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Hi,
I am new to the forum. I had a left side mastectomy in June, with TE inserted and filled about 100ccs. My recovery was extraordinary; drains out after 6 days, driving on the 7th, walking 4-5 miles each morning with no issues. Each fill went great; breast tissue looked completely normal and I was able to wear all of my clothes with no detection of a problem. I am two weeks away from getting my implant. Then suddenly my breast starting hurting and turning purple/bruised. I called the doctor's office but was told it was "normal" for a final fill. I know this wasn't normal for my body. Got in to see the surgeon and he told me TE was infected and would have to come out. Another 6 weeks of healing, another operation to replace TE, another 3 months of expansion, then the implant. I am devastated. I was buying a house and have had to back out of that. All plans for holidays gone. I feel doubly betrayed by my body and highly suspicious of doctors and procedures. I sent my surgeon a study by NIH that saved 75% of TEs by following a new protocol but I doubt we have time. I am scheduled for surgery tomorrow. This has just devastated me, in a way even the original diagnosis didn't. i feel this will never end, my body is broken, and I am in despair. I sailed through so strongly, and now I am back to square one -- no even BEFORE square one. Afraid and depressed.
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Dear tinkerbell,
We are so very sorry for what you have been through and so glad that you reached out to our community. Please stay active here as others will be able to share their experiences and provide support and helpful information along the way. We will be sending you warm and healing thoughts as you go to surgery again tomorrow. Please keep us posted on how things go. Let us know if there is anything we can do to help you to find your way around here. The Mods
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tinkerbell, I'm so sorry you're going through all that. I've been there, if it makes you feel any better (probably not.)
I'm curious about this study that you mentioned? Do you have a link to that?
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raven - hey, how are you? I am guessing this is the study:
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Hi, SpecialK! I'm OK, thanks. Have been MIA from the boards for a while because I just needed a break, you know? I'm less than three weeks shy of my one year anniversary of my exchange surgery and I'm having symptoms of infection again, although I have no earthly idea why. I haven't had any kind of injury to the breast, cuts, scrapes, bruises - nothing. ~sigh~ Just lucky, I guess. It just started Friday night and I have zero interest in sitting in an ER for the week-end, so I'm taking some leftover abx I found (bad, I know) and waiting until Tuesday to call the ID's office.
I hope you're faring better than I am!
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Been in expanders for five months. Two months after mastectomy/reconstruction surgery, had my first and only 100ccs fill. That one fill put me in the hospital for 4 days with cellulitis on one side. A month after that, developed nummular eczema, which my doctors treated as "ringworm" for two months until I figured it out by googling.
I'm already fed up so I'm not waiting around to see whether or not I develop breast implant illness. I'm meeting with a new plastic surgeon to ask whether I'm an a candidate for DIEP. And if not, I'll explant for the flat life. Fin.
https://frydasmastectomy.tumblr.com/post/182010850189/breast-cancer-topic-rbs-red-breast-syndrome And thanks to this forum I've finally got a reason for why my reconstruction is permanently rosy. Implant recon was never going to be for me.
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Hi.
Is there a more active thread re: TE issues? This thread is quite inactive.
I am having issues with one TE, my previously radiated breast. Almost from the get-go.
Recently radiated breast is A-Okay.
Consulting with my PS next week. She wants them out. I'm devastated. Another operation to now go flat???
Anyway, looking for a more active thread. Thanks.
J~
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@Jaybird627 - While I don't have info to give you, I can have empathy for you. BM on 11/16. Since my skin was thin, the expanders were put in but not filled. Also found more cancer but clear margins. Within a month of my BM, I developed an infection and weird foamy pink stuff (I still need to ask my PS what it was) was coming on out my right side scar across breast as well as a hole. I was rushed to surgery for a debridement (cutting off dead skin and resewing). Lack of blood and thin skin apparent cause. Mind you, I was pretty out of it when PS was explaining. Two weeks later, the cancer side developed a hole. PS said he was going to take out the RS expander and did I want the other side out? I still had two drains this whole time (2 months). At this point, YES! I had drains out for two days (yeah shower time) and the new drains out within a week. However, my breasts are a constant reminder of the failed expanders as PS tacked everything down (nipples were saved) so I look like a someone took a vacuum and sucked everything out of my breasts! Basically, he made it so I can still do implants.
Like you, devastated! Like you, another operation to do flat? For various reasons, I'm not going for the implants. I see PS next week. Has anyone experience the surgery remove all the skins so just have one scar ? Right now, my chest is tight and doesn't move at all!
If you do decide to try again, from friends and reading, reading, reading, it seems like some of us need to heal from the mastecomies (which is what my PS said).
Good luck!
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Hi Ladies,
Well, my PS can't figure out why my body is rejecting the TE but she says regardless of why it must come out. I'm in pain. The hard angles are poking my skin out. The other side/TE is fine. She wants to keep that one filled in case we try the TE again some months down the road after I heal. So, that's where I'm at. Trying to schedule it to be removed then back to work, work, work until I'm healed enough to revisit a TE on that side again. If that fails we'll look at TUG flap or similar. DIEP/TRAM are not an option as I have no belly fat. I guess one bright side is that my nipples are okay. No feeling of course but I currently don't need tattoos. Hahaha...
Good luck Patty!
J~
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Thank you for sharing your story, Pattycolumn! We hope you find this community to be a source of support!
The Mods
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@Patticolumn did your surgeon mention how long you will have to wait until you try again?
my sister has the same issue , thin skin and the incision would not stay closed and now has an infection.
She had an emergency surgery yesterday to remove her left implant , now is flat on that side but has skin and nipple. She is devastated and sad.
@JAYBIRD627 So sorry that you are experiencing so many complications , as if this is not difficult enough.
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hi!
I hope your recovery is going well. My left TE was infected and had to be removed on Jan. 9. 2019.
On Jan. 21 I had a new spacer put in and have had 2 fills so far (drain currently still in place). During this surgery I had my right spacer replaced with an implant.
Have you had your spacer replacedyet?
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@Canadian21 - I didn't ask because I wanted to wait until the end of the year (build up sick time plus we are closed at holidays) but before calendar year end (OOP reached already). So him telling me that it takes 6-8 months to heal was fine with me. I had emergency surgery twice
too and took both out; I was over it; I'm 58 and was small anyway. I have used email to contact my PS's nurse to ask some questions to get a quicker answer. It is so very heartbreaking to not have things go the way we hoped!
On another site, someone mentioned saving the nipples. Coincidentally, I was just thinking that.
The orange foamy stuff was Benedine and necrotic tissue. Lack of blood flow.
Thank you for all the kind words!
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TE issues update:
Shifted surgeon from IL to GA.
Was supposed to have TE removed by IL surgeon but infection set in with open wound so had to have TE out sooner than planned.
Even though the R breast was radiated 14 years ago he said skin issues can surface at any time hence the bad reaction to the TE.
The L TE was fine, just uncomfortable due to my "thin skin", the skin is fine 5 months after radiation.
So, right TE removed completely. Waiting 6 months to heal before next step. Possible latissimus muscle flap. Hoping for implant though
as I'd like to 'match' on both sides.
Left TE removed and exchanged for silicon implant, 285cc, which seems small to me as I was a full C in my youth but it's better than my
saggy 50+ year old breast I guess. No choice really but to accept it so I'm learning to like my foob. lol.
Moving forward. As long as my R breast skin heals then no further surgeries for 6 months.
J~
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Since my TEs were removed and I am waiting to have the excess skin removed, the skin is sooooooooooo itchy. Hopefully this is a good thing (healing). Most of the skin is tacked (sewn) down except for the top of my "breasts". Anyone experiencing this? Does the skin eventually loosen up? Good luck to all and thanks!
Update 3/28/19: TEs removed 1/2/19 and yes, the skin does loosen up! As for the itching, some research I did indicates it is caused by the nerves healing and I am fortunate that it is not pain (neuropathy). I had three surgeries total so again, luckily not pain!
Have a good day!
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I was hoping not to enter this club, but here I am. I have TE's filled with 60ml. All looked well, had some small issues on the left side and a 1/2inch crust on the right. Last week during check up the surgeon took the crust off and discovered the skin is not healing underneath. He sewed it closed. Now one of the stitches opened up and it's still not healing, there's a part opened up and oozing. It's not large, about 1cm, but I am going nuts. I am imagining infections and long healing and all. 😣
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hi ladies. I had my bilateral mastectomy on August 30th with TE. I had to have my left expander taken out due to an infection about a month ago. I went in on Monday in hopes to have my implants placed but unfortunately they had to put the expander back in because there wasn't room. Although I knew this was a possibility I'm feeling pretty defeated. I was planning on doing reconstruction but don't know if this will be a possibility. I'm hurting a little more than I thought I would. I want this surgical drain removed. I go back to work on Monday so finding the time will be difficult. I would like to showe but can't until this drain is taken out. I was wondering if others were able to have successful reconstruction after an infection or did you continue to get infections. Im Just tired of this all. Are there any questions I should be asking
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SisterStrong - I never had an infection but I DID get to take showers with drains in and without covering them, after my BMX and after DIEP.
What experiences did others have ??
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So sorry about your disappointment . I can't speak to that, but will confirm that neither of my plastic surgeons would allow me to shower until the drains were out either. Although all surgeons are not in agreement about this, mine explained that they thought it increased the risk of infection.
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Hi everyone,
I'm 4 weeks out from BMX with TE's (under pecs) immediately and today noticed horizontal dents/folds across middle. No pain though. Will this go away? I have had one fill of 90 mg's 10 days ago. (120mg's during surgery). My husband says the next one will be 300 mg's LOL)
I'm wondering if I have been doing too much because otherwise I have been energetic and strong so able to do more this past week. Have been doing light yoga, gentle swimming and some light housework.
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Hi Snowflake,
I never had any ripples, dents, etc. Just the open wound that developed.
I do have a horizontal divot of sorts at the top of my breasts where the fat that was not breast tissue meets the non fat skin but I think that's normal because neither of my PS's mentioned it.
Maybe call the PS's office? Good luck! It's an individual journey for most of us it seems.
J~
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Snowflake, I noticed dents and bumps that would change as I went through the expansion process. They went away as the TEs were filled more. My surgeon assured me that it was perfectly normal.
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