TE TROUBLE
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OK, so I decided not to continue going rogue with the Amox. for now. I'm not even convinced this is infection (at least not yet). It seems possibly like some sort of inflammatory response.
Now it's late afternoon where I am, and pretty hot (high 80's). I've been working from home today, and as things heated up (we don't have central a/c) and I was moving around the house while working and making a run to the store for lunch, the red patch returned on my left breast in the same place it appeared as of Monday night. It looks almost like a heat rash, about the size of a half dollar. No fever, and the skin isn't hot to the touch. I'll be curious to see if it recedes again tonight when the weather cools and when I take off my bra to sleep. Cautiously hopeful.
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MDW-here's hoping it's nothing. My first culture was negative also. I had IV antibiotics that kind of held it without getting worse. When it didn't get better, he made them culture it for a longer period and that is when everything went south. I was pretty completely filled but had been dealing with this large red spot for close to 7 weeks. Finally, the culture showed pseudomonas, a bad bug.
PS said we needed to go in and if the infection wasn't bad, he would switch to implants. If it was, he would remove the expanders. I was resistant and said what was the worse that could happen.
His reply: Sepsis.
That was all I needed to hear, lol. I ended up losing the expanders, but he noted that when he went in, it didn't look terrible and he even gave implants some thought, but decided to err on my well being.
When the expanders went back in, within 24 hours I had a large red rash there also. Totally different. No one could figure it out. My dermatologist who is a genius skin cancer doctor had a pow wow with my PS and said he thought it was a reaction to the expander, gave me a heavy duty steroid ointment to use for 7 days only. Fortunately that was all it took and things stayed ok until the implants went in.
Somewhere along in there they determined that I am now allergic to sulfa drugs. Not sure if that played a part or what.
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fluffqueen:
What you went through sounds scary! I'm so sorry. Even hearing words like "sepsis" is terrifying--even if that's the worst case scenario.
I'm still a bit nervous about why this red area wants to persist. Yesterday morning, it was almost completely gone...this morning, it's still about as red as it was by the time I went to bed last night. No worse but not really any better, either. It seems to be exacerbated by things like wearing a bra and being more active. But it's nerve-wracking because the earlier infections started out this way, too...recurring inflammation and then boom.
When your expanders came out, how long did you wait for things to settle down before they put expanders back in? Also, when the expanders went back in, it sounds like you didn't have further issues until exchange, except for the rash reaction that thankfully resolved with the steroid cream. I'm wondering at this point if I'd be better off, frankly, having the expander taken out and just letting things sit for awhile. I don't even know if there's possibly some bacteria there that might, like the one you had, not show up on a 3-day culture.
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Hi! I'm new here.... How did you know if something was really wrong with your TE's..or just 'normal' pain? I'm 4 weeks post bilateral mastectomy with tissue expanders put in during surgery. The first few weeks it was mostly the pec muscle pain that was the worst but over the last two weeks I've been suffering more from what I'm guessing is nerve pain. I've seen my ps and she says it's normal. I'm experiencing a burning pain in the center of my chest on my breastplate...and the outer edges od the expanders towards my armpits are sore and numb. Overall, they just friggin'hurt... I can't describe the sensation but it's so uncomfortable. Clothing that has any elastic or tightness in any way is unbearable. But I also feel like walking around without support ( bra or tank with shelf bra) hurts as well. No over the counter meds help, I have Valium but it just makes me sleepy. I've had only two very small fills. The first time the discomfort calmed down after a few days but now after the second fill I feel more nerve pain and the outer edges seem to be poking out towards my armpit. Does any of this make sense. As I type , I don't even understand myself.... .TIA!
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Hi all! This is my first post as a reconstruction sister! I had a bilateral skin sparing mastectomy in December 2014, followed by 6 rounds of Taxotere and Carboplatin and a year of Herceptin. I finished Herceptin in January, and I had my TEs put in April 20th. The first week and a half were terrible, but I actually started to become more comfortable after my first fill up. I have 850 cc expanders and have been filled so far up to 770 CCs. Hopefully, next week or the next will be my last fill.
My PS noticed two fills ago that my teardrop shaped TE on the left side has twisted. This week, it had twisted more. He attempted to do the "turn the baby" technique, but he was afraid of causing me too much pain, and as the shape is still working, he went ahead with the fill ups. Has anyone here had a TE to twist?
Also, I have a diagonal fold about 2-3 inches above my incision on both sides. Does anyone know what is causing those? I'm worried that my TEs are not going to be able to stretch those out, and I've heard that fat grafting is bad about reabsorbjng. My insurance also won't pay for the fat grafting. Any thoughts
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Lucsmama: I'm really sorry you've been having so much pain! I have had issues with my TEs, but not much actual pain. I will say, though, that my PS and his nurse both warned me that there can be a fair amount of discomfort. It's always so hard to know what does and doesn't fall into "normal" ranges. But it does sound like the level of pain you're describing is pretty high. I'm hoping things have gotten better for you in the days since you posted.
ReBOBca: Regarding having your TE twist--I haven't experienced it, and hadn't heard of it before. It sounds like it would be painful, but you didn't indicate it hurts--just that trying to turn it might hurt, I guess? I hope all goes well despite the twist.
I don't know too much about the fat grafting. Did your PS explain what the diagonal folds are intended for?
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Hi, there. New to this thread - jumping over from the surgeries forums. I had NSBMX (left side prophylactic) with over-the-chest-muscle TE insertion on April 15th. Subsequent to that I experienced what they thought was nipple necrosis and was scheduled for a nipple excision on 5/11. However, by the time I went in for surgery a lot of healing had taken place and so I lost only the nipple on the left (areola all intact) and the nipple and only some of the areola on the right. On 5/19 I went in for follow-up with my PS and the right side drain was removed (left had been removed during surgery on 5/11.) In the middle of the night I started experiencing extreme pain on the right side and by 4:00 p.m. on 5/20 the breast was swollen, red, and hot. I had emergency surgery in the evening on 5/20 to flush the breast and install a new drain, was admitted to the hospital for a couple of days of IV abx and a culture was taken at that time. Finally on 5/26 the culture revealed serratia marcescens, a bacteria usually associated with UTIs. I never had a UTI nor did I have a catheter during any of my procedures - how this particular bacteria ended up in my right breast will likely remain a mystery. I was referred to an infectious disease specialist on 5/27 who put me on a new antibiotic and had another emergency surgery on the morning of 5/28 to remove the TE on the right side. The infectious disease specialist indicated that the infection would never clear up with a "foreign object" - meaning the TE - in place. The expander will need to stay out for at least three months, then I'll be able to start the reconstruction process on that side again. Now that the expander is out and the new abx are starting to kick in I am completely pain free on that side and it's been kind of a relief.
Lucsmama, the only advice I can give you is to go with your gut. Even after my breast was flushed I just "knew" that something was wrong - I was still getting a lot of really cloudy, thick drainage on that side and stabbing pains around the incision on the breast. I haven't really had any pain on the left side since a week or so after my original NSBMX. i wouldn't say the TE on that side is comfortable by any stretch of the imagination but it's not painful (bearing in mind that my TEs were implanted over the chest wall muscle.) If you feel in your gut that something just isn't right, then be persistent in your pursuit of an answer.
ReBOBca, I have never heard of a TE twisting, but that doesn't mean much - I'm new to all of this as well! I hope you get the answers you're looking for regarding the skin folds. My PS said that he will do fat-grafting at the end if needed once I get to my exchange surgery - he refers to it as "icing on the cake" and likened it to adding spackling to dents on a wall as needed (my PS is a hoot.)
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Hello everyone, My name is Susan. I had a right side mastectomy on Dec 28, 2015. One month later, my incision opened. I went back to surgery and we started all over! That went really well I was two more pumping in saline appointments away from being finished! It got red, hot and infected almost overnight. In hospital again, and took TE out. On IV antibiotics... My question for everyone is...
Since I had a lot of skin already stretched because I was almost at the end when I had my TE out... My incision looks really puckered and abnormal. I feel deformed. It was extremely disappointing to get my TE out. It was harder than getting my original mastectomy! Has anyone had success with the end result if your breast looked so tormented like mine does?
Help!!! Susan
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sadsusan - short answer - yes. I just exchanged for the second time, and have had three different TE on the left side, and that side has had 15 surgeries total. Your PS can alter the incision line when you have the next surgery. As a side note - I had an implant on the left for two years before it was removed due to a problem during a repair surgery. It was out for 18 months but when it was replaced with a new TE and I re-started the process, I was able to fill much more quickly than I did originally. It is possible that if you replace with another TE you can do the same. Wishing you the best!
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SpecialK,
Thank you so much! I really helps hearing your story! I am just real nervous because the loose skin is so scrambled up together. It looks like a puckered mess right now. My PS is wonderful. She is a God send. I love and trust her. She tells me not to worry. That she can fix it, but it just looks yucky right now and she is going to have to perform a miracle to get it right again!
Enough about me....I can't believe you've had so many surgeries on that one side! I thought my 3 was bad enough! You are my new hero! God bless you in your third TE. I've only had one going on two and I feel like I've been put through the ringer! I really wish you well!!!!! Please take care and THANKS again!!!
Susan
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I'll add my 2 cents.
I have a TE - MX on 5/3. Last drain removed this past tuesday, even though it was still producing 50ml. PS didn't want to risk infection and we were hopeful that it would stop on it's own.
It didn't. By Thursday it was red, hot, and swollen.
So, yesterday I had the great time of having it irrigated and getting a brand new drain.
The doc doesn't think there was infection, but did a culture to see. I'll find out Monday.
It's crazy. I already had implants 10 years ago before having BC without any problems. I so hope this drain stops this time!
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suz2016, what color/consistency is the drainage? When my breast was not infected the drainage was red, then reddish-orange, but mostly "clear". However, once the infection hit the drainage became cloudy and thick-looking. I'm not suggesting that this is the only indication of infection, but if your drainage is clear and you're not spiking any temps (which I did once or twice) then you may be OK. Fingers crossed your culture comes back negative.
SpecialK, thanks - as always! - for your invaluable input. I was seriously wondering how my sad, puckered up right breast was ever going to sort itself out again once I get to start over, so I'm glad to hear that a good outcome is possible.
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Suz216
My PS keeps my drains in until they're putting out 15 cc/day, and keeps me on antibiotics! I had my TE removed three weeks ago and I just got my drain out this past Friday! Thank God! I hate those drains!
I always had a lot of fluid... After my initial mastectomy my incision opened up after four weeks! Fluid was everywhere. It was just Alittle area and Gobbs of fluid came out. Needless to say, I had to go back to surgery to start over= more drains! AND when I was filling my TE with volume (every time) I would have to hold pressure on the needle hole for over an hour because fluid would come out! SO hang in there!!!!
Susan
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New member of the TE troubles club. Had a BMX on 5/16. Right side issues with small patch of necrosis and infection surfaced over Memorial Day weekend. Repair surgery last Wednesday, and hospitalized with IV antibiotics until Sunday. Relieved that the TE hasn't been removed (so far). I was sent home with a prescription for Cipro, 500 mg twice a day for 14 days. I've only taken two pills, but I'm already wondering if it's not a great fit for me - diarrhea, numbness and tingling in hands and legs, and a little bit of a foggy brain. Just wondering if any of you had issues taking Cipro or lingering effects? Thx
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toystory - did your PS culture the infection? I would call and ask that, and if Cipro is your only option, or if another broad spectrum antibiotic could be used
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He did culture it and there was a bacteria growing in it - although I don't recall what he said it was. (Can I blame the foggy brain?!?). They tried to give me a Vanco drip at a rapid pace right before my surgery, and I developed "Red Man Syndrome" - I guess I looked like I'd been out in the sun all day and my face was tingling - so they had to be cautious about how they delivered meds through my IV throughout the remainder of my stay. Maybe my body's just not going to be happy with any of the antibiotics..
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toystory - different bacteria respond to different antibiotics, that is why I wondered. Usually on the culture report it will specifically outline what drugs are useful against the particular strain of bacteria. Often you can also have a fungal issue with implanted devices which would require an anti-fungal drug in addition. Vancomycin is used to treat gram-positive infections, can be used by those allergic to penicillin, and can be favored for use when there is an implanted device - like a TE. Red-man syndrome can be avoided in some by slowing the rate of infusion and/or simultaneously administering an antihistamine. I have had this reaction also - it does look like a sunburn, and I am betting the infusion speed was not helpful for you. Cipro is a broad spectrum drug, but I am wondering if you might be able to use Doxycycline or Clindamycin instead.
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Thanks for being a wealth of info, SpecialK! Will reach out to my PS and see what he thinks...
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Hi guys!
When in the hospital to remove my TE, I was started on IV Vancomycin. I didn't exactly have red man syndrome, but I did have an allergic reaction to the med. my entire head started itching- even my eyebrows. I know it sounds weird but they stopped the infusion and the itching stopped. She started me on Clindamycin and it worked well
Susan
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here I am, almost 6 weeks from the initial surgery. I was so excited 3 days ago as it was finally down to 40ml for 3 days in a row.
but, now, it's back up again. I see my PS tomorrow and I know he will leave it in. it's got me so depessed I can't stand it. the culture was clear, so that's good. I just don't understand why I keep accumulating fluid! 6 weeks is crazy long.
I'm still on antibiotics so I cant go out in the sun. which means I don't go anywhere because it's finally hot out and I can't wear sleaves.
I basically sit and cry most of the day. like I'm doing now. I'm about to lose my job (they hired somebody do take my place since my PS will not release me until the drain is out). my savings account that I've been saving for 4 years to buy my house is gone. I have to buy by the end of the year or I have to move out. so, not only did I lose my breast I'm losing my job, my money, and my home. and, on top of it all I need to figure out how to pay my $5,000 out of pocket before I also lose my credit.
I'm not doing well at all.
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suz I have nothing helpful to offer but a hug for you, you sound like you could use one. I am so sorry that you are having this experience, I hope things get better for you asap.
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it's 6 weeks yesterday and still have the drain, at least until Monday now. I'm just so lost right now. and having trouble coping.
first time I've felt so down and depressed since it all happened. I'm guessing that's to be expected. I feel like such a baby when I think about it. but it's destroying me. I obsessover this stupid drain. look at it all the time. get mad at it even. wonder if it will never stop, that maybe I'm just rejecting this thing.
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Hang in there, suz. I swear, it will come out eventually. If it makes you feel any better, I had my right side drain for seven weeks, so it's not unheard of. Please just try to remember that they're serving a purpose.
I just noticed your other post where you can't go out in the sun because of your antibiotics. I'm in the same boat and it's got me so freaked out that any time I go outside I just go as fast as I can from shady spot to shady spot!
Sending you lots and lots of hugs. Is there any kind of support group in your area that you can get in touch with?
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oh no!!!! you too????? ugh. next Wednesday will be 7 weeks since mastectomy, today is 2 weeks since second surgery to put in a new one.
Monday and Tuesday I was down to 30ml. I was so excited on wednesday, but he wanted to a it one more day. wouldn't you know it? it was up to 45 on wednesday, then 40 yesterday. I see the PS on monday.
I have work wanting me to travel out of town a week from next monday to a client site for 3 days. I won't do that with a drain, just because I don't think it's safe. if something happens, like it gets accidentally pulled out, or it gets really heavy or something I don't want to be hundreds of miles from home trying to find a doctor or ER.
ugh, I swear.
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suze how'd it go?
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Hi Everyone - I had a total skin-sparing MX March 2, 2016 for Stage 2 LCIS (0/8 LD) with immediate reconstruction using TE and Alloderm. After each of the fills, the incision got redder, sometimes with pain, heat and some weeping. Finally, on 4/10 I went to ER with infection; was given IV antibiotics, had TE removed; final DX was cellulitis of the chest wall. PS said she was also taking out Alloderm along with TE removal. The new incision got gummy and the PS cleaned it out, only to reveal a large cavity I suppose where the TE was. I have been packing the open wound ever since, except when I was on wound VAC for 2 ½ weeks that shrunk the width of the wound in half. Another infection followed debridement. I know some of the Alloderm is still present, because I saw it and PS said she couldn't get it all because it had bonded to the skin. I'm now under the care of a wound care specialist who is also a PS now. I'm two months out from the TE removal, and the inside of the wound is gradually getting smaller, but it's not closing. We have talked about another surgery to remove the remaining Alloderm, which may be the source of infections. If the Alloderm is the source, I could be plagued with cellulitis in the future. While I currently don't have classic signs of infection, whenever they go in to measure the wound, I am wiped out later that day. Has anyone gone through this - two surgeries to remove TE and Alloderm or other tissue replacement? What was the recovery like for the 2nd surgery? I go back tomorrow and am tempted to go ahead with the surgery to remove ALL foreign material from my body so I can thoroughly heal! Thanks for sharing your experience strength and hope.
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twotime - I have had issues with delayed healing due to remaining allograft material after removal of an implant, not a TE. I had a repair surgery several years after I had completed reconstruction and that placement of new allograft caused a cascade of problems and more surgery. I eventually lost the implant and did not heal with the allograft left in place, even though I had no infections and never did. It was strictly the "foreign body" that was preventing my wound from closing although not to the extent that you are experiencing. Once the material was removed I healed and had no further issues. I would strongly consider another surgery to remove the allograft material, I think it would be helpful for you. I don't know if you are considering moving forward with any future reconstruction or have decided to go without, but I did not have problems once I had been given time to heal once the allograft material was totally removed. I did have the implant out for a total of 18 months and had to start over with an expander and go through the entire process again, and did not achieve total healing until 6 months after all of the allograft was removed in a subsequent surgery 12 months after the implant was removed.
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Hi everyone,
I had my surgery on 6/13, TEs filled at 120cc after mastectomy. Removed JP drains on 6/20 and had my first fill on 6/23/16 (30 cc in each side).
The TE's are hurting a lot, it feels as they are pushing too hard against my chest walls, and its hard to breath at times.
Is this normal? Hydrocodone is not helping me much. Any suggestions? I am suppose to go back this thursday for a 2nd fill? Should I bother or should I cancel.? Im in pain 24/7, sometimes is less and somewhat bearable but sleeping its very difficult. My right side also seems swollen in comparison to my left side and that's the one really hurting.
Please, any suggestions, opinions on what to do will be much appreciated.
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fubc - getting a fill 10 days after surgery is pretty fast, and yes it is normal to feel that pressure that makes it seem hard to breathe. That feeling dissipates with a few weeks of healing post-op for most, and it might be wise to delay fills until you are not having as much pain and tightness. Often pain meds don't ease the feeling of tightness but muscle relaxers do - Soma, Flexiril, Skelaxin, and particularly Valium. Your PS should be prescribe one of those for you. Good luck!
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Thank you Special K. I ran out of my prescribed muscle relaxers. I am seeing my PS tomorrow and hopefully he'll be able to tell if my right side has a problem or not. It seemed so much bigger and swollen.
I guess i will wait a few weeks before considering another refill. I haven't been able to sleep in days now. This process is becoming way too painful.
Boy, I want my life back :-(
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