TE TROUBLE
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lisbeth - it was hard to change PS - I stayed with the first one through the loss of the TE, the loss of an implant two years later, and 12 surgeries. He is a lovely man, and we had great rapport and got along very well, and I knew he wanted the best for me - but he was in over his head. I am a Murphy's Law patient - if it can go wrong, it usually does, lol! I was fortunate to spend a lot of time with a friend who had different PS for her recon - she is single and has no family locally so I went to her appointments with her and got to experience everything from her consult prior to BMX through her recon, and nips. Making this change was hard, but ultimately was for the best - the new PS is meticulous, books fewer surgeries a day so spends a lot more time on each, is cautious to a fault, and very invested in success with complex issues. We have been together now for 4 surgeries, and hopefully that is it. I am a complicated patient, have a lot of allergies, and she actually clears the OR of the things I can't have before each surgery. She is the best, love her!
Hope your PICC line install goes smoothly, and painlessly and the abx do their job asap.
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TWills, so sorry for the late response to your question about my timeline. I'm sorry you had to go ahead and have the TE removed but, as I said before, it IS possible to have a replacement TE and to continue with your implant reconstruction. Here's my timeline, since you asked:
Initially diagnosed with DCIS 9 years ago, treated with rads.
Recurrence in 2016; bmx with TE placement on April 15, 2016.
May 11, 2016 - nipple excision due to necrosis, both sides.
May 28, 2016 Right TE removed due to infection (a really rare bacterial infection - serratia marscesens - almost certainly hospital-acquired.)
Oct. 25, 2016 - Fat grafting.
March 17, 2017 - Reinsertion of TE on right.
April, 2018 - start having redness/pain on right again. Started on high dose ABX. All cultures came back negative (which really doesn't mean anything as they didn't culture until I was already on abx.) Infectious disease doc wanted to have TE removed again but I refused. Took three months of high-dose oral abx; stopped in July. No further "symptoms" of infection such as fever or pain since stopping abx. Breast is still red but in a very defined area which I presume is from the original radiation 9 years ago but no other symptoms.
I'm scheduled to have final implants done on 9/19 at a surgery center instead of hospital (no sick people there - lower risk for infection.) I guess it will remain to be seen whether or not it will be successful.
LisbethS., I'm sorry you're having problems as well. Are you home yet? I'm praying so hard for you that things clear up!
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raven, thanks for the well wishes. I'm so excited for you to finally have your surgery on the horizon, you've been through so much. Snoopy happy dance!!
eastcoast, thanks. I think the team at the hospital was great but not my PS. When I called his scheduler last Tuesday to say that my infection was looking a little better (PS couldn't see me that morning) so I wouldn't need surgery, she made a snotty comment "well I hope your insurance will cover your hospital stay now that you're not getting surgery" not gee that's great you're responding to the antibiotics, instead a veiled threat since they're the ones who put me in the hospital, they have to justify it to my insurance. She knows I worry about insurance so she hit me right where it counts. What kind of sick person does that to someone? I swear she must get a free cruise if she books his surgery schedule solid.
specialK, I think Newton's law applies to me too. I got my picc line Thursday and first the lidocaine didn't work so I could feel her cutting into my arm, then the vein spasmed so she couldn't do anything until it calmed down then the line wanted to go up my neck instead of towards my heart...ugh it took an hour longer and she almost gave up, but it finally cooperated so now I have a Picc line.
BTW, your PS sounds like a dream come true. Makes me want to move to Tampa just to have your PS.
I got out of the hospital late Thursday. Nurse came out Thursday at 8pm and wasn't done until midnight with training me and my husband. One abx is every 12 hours runs 1.5 hrs, one is every 8 hours runs 1 hr, and I have to take an oral drug every 6 hours to prevent c.diff., so I'm getting no sleep. I already have so much trouble sleeping. No one explained how difficult at home abx would be. And one of the abx is really hard on the kidneys so they draw my blood every couple of days, hope I'm not trading my kidneys to try and keep my TE.
Ugh, I guess I should just be happy I am getting IV abx but the breast isn't really improving anymore so I think I'm probably going to have to get it out anyway.
I'm such a downer tonight. Sorry. Have to stay up another half hour until my abx is done.
Hope everyone is having an awesome Holiday weekend!
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Lisbeth:
Sorry the at-home abx is complicated. We don't seem to understand these issues until we have them -- I guess that's the way it is. In my humble opinion, and this is because I had an infection, too, I think -- reconstruction and the complications that are possible, are not terribly detailed by plastic surgeons in particular. However, perhaps we're in the minority, so that's best for sanity of everyone. Idk.
I'm thinking of you and really sending positive vibes your way that this damn thing clears and you can keep the TE. I'm glad you and your team are giving it time. Mine did not clear quickly, either, btw.
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LisbethS, I'm so sorry the at-home abx are so difficult to manage. Hang in there. I'll be thinking of you.
I agree that most PS won't tell you about possible complications but the fact is, those of us who go through this are in the minority, besides which they couldn't possibly tell you about every possible thing that "could" go wrong - no one would ever go through with reconstruction if they did!
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hey y'all! I'm sure my question has been answered somewhere in the 290 previous pages, but I'm going to ask anyway...has TE put in on aug 28th. Mastectomy was 4 yrs ago. It was skin sparing. I have had a ton of pain, until yesterday. No more sudden pains that's take my breath away. Had my post-op appt today. He was shocked at how much pain I've had. Also, when he took a look at my breast he was shocked again at the large amount of swelling at the top of my breast. The TE has not rotated. He doesn't think it's fluid. Just swelling. Next appt in 3 weeks . It is so tight. How do i know if it is infected infected
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kjones - often with an infection you will see redness and fever, and may feel ill on top of any pain. Keep an eye on things - hopefully you just have post-op swelling and it will resolve soon.
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KJones13, I agree with SpecialK. It's likely that an infection would be accompanied by redness, extreme pain, and/or fever. It's kind of one of those things where "you just know". Fingers crossed it's just normal post-op swelling for you.
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thank you two for the response. I feel tonight the swelling is more. I seem to have this overwhelming feeling of wanting it out. Thank you
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Hi ladies
I had TE surgery on September 1st I had lot of pain but everything was fine the scar look healthy
Last week the right side prophylactic side was very red I saw my surgeon he gave me antibiotics he said its not an infection may be just a skin reaction
Yesterday when I change my dressing I found o yellow liquid and it came from my scar
I have an appointment tomorrow with my surgeon but I'm In stress I had 3 surgeries am not ready for other surgery
Can u tell me please if the yellow thing and the redness mean infection ?
Who had same problems with TE
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I had an infection a few weeks ago, I had redness and fever. I'm sure I would have had oozing if my incision would have opened up any because that's where my infection was, just under the incision. Good luck, hope it clears up if that's what it is.
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thank u TWills for the response.
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gigilala - is the fluid coming from your incision clear and yellow, or cloudy - and does it have an odor? Clear yellow liquid may be serous - this is sometimes a sign of healing, or the body's attempt to heal. If the liquid is cloudy or has an off odor it is a more typical sign of infection.
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Special k : thank you for your response.
Yes the fluid is clear yellow no odor
And my breast is very red
I really don't want to lose this expander. Any advice would be so welcome.
Thank you
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gigilala - ask your surgeon tomorrow if they can culture the fluid coming form the incision. If there is bacteria present the culture will indicate what the correct antibiotic needs to be if you do have an infection. Wishing you the best.
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Thank u special k
I saw my surgeon he took a lot of fluids he sent some for test
He gave me until tomorrow I will see him at 5pm
He said if it stay like this I need to go to the hospital for iv antibiotic
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hi ladies
I still have redness in my R breast but no more yellow liquid my ps said the liquid is died fat that s mean died tissue so may be I need another surgery to take all those tissue
I will see him tomorrow and may be surgery on Friday
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Hi Ladies, I am desperate for help on tissue expander problems. I had a PBM w expanders on 8/18 (8 weeks ago) everything was going according to plan till Fri 9/8 when I had my first fill. They pulled my left drain as it had 20cc or less for 3 days in a row, per their rules. The Right they wouldn't pull because it was 20cc, 25cc, 20cc. It was Hurricane Irma weekend of course, we evacuated, that Sunday (2 days later) I started having a pick-red cast on the lower portion of my Right breast. The on call Dr said I could start a bottle of Clindamycin as soon as I could get back home to it (we had been given 2 scripts) which was Mon. The infection cleared up and I skipped my next Fri fill just to give the right a break. The next Fri 9/22 I had a fill (they do 60cc) and just exactly as on 9/8 2-3 days later the infection came back w pinkish cast and a redi-ish splotch to the right side where my right arm rubs. This time I went into the office and the P.A. consulted the dr in office and they arranged for me to be put in the hospital for 4 days on IV Vancomycin. While in the hospital they did a culture and it was Enterococcus faecalis in very very small quantities. At that point I STILL had the drain in the right till the day of my hospital release 9/29 when I insisted it come out. The infection looked almost gone except the splotch was still visible and a bit pink.I went home w Cipro & Augmentin which I just finished. The infection looks almost gone w barely any pink cast on the lower skin and the splotch is barely pink and about 50% smaller.
I have an appt w my plastic surgeon on Thur for him to decide if the infection is better. My issue is that my my plastic surgeon has scheduled me for surgery this Fri 10/13 to clean out the expander, replace it (or so he says, he also mentioned just remove if it's bad) etc. and I really don't feel we have exhausted all the options before surgery. It has been 8 weeks and I've been on bed rest from the infections and having that right drain and I'm really really over this process. I was not at all prepared for there to be issues. I honestly thought I would be resting maybe 4 weeks, have fills & get my implants and be done :-( Just before my surgery I had a stroke like event from a 3T MRI, a biopsy of 3 growths on my thyroid came back inconclusive and must come out, we were hit in a car accident & my car gone for 5 wks, I missed my 50th birthday infact I boycotted it I've been so depressed about having done this surgery.
Any advice would help I can't stop crying about how bad things have been since 8/18. Thank you ladies! ~ liz
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hi all-
I’ve been using this site ever since I was diagnosed but finally joined today. I’m 32 and was diagnosed with DCIS, grade 3.
I had a double mastectomy on July 7th. I found the TE uncomfortable but everything with my fills was going well and I finished them in early September. I had one instance where a pocket of fluid needed to be drained.
A few weeks later I started having really bad pain and a red spot appeared on my left breast (about the size of a quarter). Antibiotics didn’t help and the pain worsened. We decided to do surgery, since my PS was unsure if it was an infection or not.
Had surgery on Oct 4th, the right side was able to successfully take the implant. The left side wasn’t an infection, but there was blood/puss and some inflammation. So my left TE was removed. And the plan is to place the implant in 3months once I heal.
The first 2 weeks after surgery I felt great! I didn’t know how much pain I was in until the TE was removed. I barely had to take any medicine, only at night to help sleep.
Now, it’s almost 1 month later and I’m having horrible pain on that same left side. My drain was removed last week and I’ve been taking an antibiotic since surgery. I had some fluid coming out of my stitches, so I’ve now been filling that “track” 2x a day to try and help keep it open.
I’m now taking as much medication as I did after the original surgery! The pain is very debilitating. What else could this be? There’s no redness and as mentioned my left breast has nothing in it now that the TE is gone.
I’m very frustrated and anythoughts would be helpful. Thanks everyone.
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Hi Elliott, and welcome to Breastcancer.org. We wanted to say that while we hate that you're here and in pain, we're really glad you found us!
We're sorry you didn't get any real answers yet. We're bumping your thread with this post, so more people will see it and you have a better chance of a reply. Till then, you may want to take a look at the Implant Reconstruction section of our main site for more information on what to expect after surgery.
Hope this helps! Let us know how you're doing.
The Mods
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Elliot1985, have they done any cultures on the drainage? What have the results been? You may want to ask for a consult with an infectious disease specialist as well. Sorry you're in so much pain. I hope you get answers and relief soon.
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Thanks for your reply- no cultures have been taken, my PS didn’t mention that at all actually. Sounds like something I can ask him on Tuesday during my follow up.
It’s tough to even describe the pain, I just feel off and like there is something on my left breast even though everything has been removed.
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Elliott, absolutely insist they do a culture. Even if they put you on an antibiotic it's possible it's the wrong one, depending on culture results. When I had an infection it was excruciatingly painful, so I know where you're coming from. Definitely insist on doing a culture if they haven't already done one. It's possible they did and just didn't give you results so if that's the case insist on the results.
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Elliot, wondering how you are doing? I had way too many infections so I know that sucks. And, yes, they had me take IV abx for 4 weeks and then 10 days of orals. Hope everything is on the mend now.
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Going to pop in with my story now. After my second round of chemo, I developed a high fever and ended up in the hospital for a week. The TE was removed, had 7 days of IV's after my week in hospital and then 10 days on oral meds. Told to wait months before trying again.
Got the TE again in the end of September, at the first PS appointment after the reinstall, the PS had to remove serum. Breast swelled, no fill. On the appointment after that I noticed and infection starting. PS removed more serum, sent to lab, put me on two different antibiotics. A week later had to put a drain in. Switched antibiotics, following lab results. PS was worried, and I could tell.
A week later, infection clearing nicely, looking really good. Drain still producing over 50cc a day. Still no fills.
Last week, first fill. Infections looks like it cleared. PS feeling really good about it. A lot of clear liquid came out with the pressure of the fill. That lasted only one day. Now back to light yellowish serum, still about 50cc a day. PS thinks as we fill in the empty spaces in the breast cavity the serum will start slowing down.
My question is, has anyone ever had a drain put in place during the reconstruction process? Have the drain in now for a month, still not ready to remove. And we all now how fun having a drain is.
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thanks for all the replies! They did a culture but found no sign of an infection which is good.
My pain is much better now and I’ve been able to stop taking medicine which is great. I had a MRI yesterday to see if the wound packing is helping or if I’ll potentially need a surgery to help it heal (hopefully no!).
Will keep the forum updated since I know it’s helpful to see updates for future folks
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MaryToU, do you mean you did NOT have a drain immediately following surgery but then they put one in later? I've never heard of that. Regardless, it sounds like now that the drain is in things are moving along. Believe me, I was a HUGE crybaby about my drains but learned the hard way that they serve an important purpose - better out than in, and all that. Hang in there; the drain won't be there forever.
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Yes raven4mi, I had the expander put in September, fluid starting building up and was drained with a needle two weeks later. A week after that noticed and infection starting. Put on antibiotics and drained again. A sample of this serum was set to lab. Four weeks and two needle drains later, my PS placed in the drain, and switched up the antibiotics. He was very concerned at this point. The next visit the infection was clear. Still producing over 50cc a day in the drain. We let it rest a week, then started the fills. I have had two fills with the drain in so far, with each fill a lot of serum come out, we had to empty the bulb twice during the fills. The stuff the come out is usually clear white. I've had to empty the bulb several times a day after the fill, things slow down again to the 50cc a day after, and the color returns back to the light yellow.
My last fill was the Monday pasts, my PS was going to remove the drain right after the fill, but so much was filling the drain that he decided to wait. He said I can remove it myself in three days, or go to his office and he would remove it. I am still producing over 50cc a day so am leaving it be till my appointment next week.
Besides all that, my newest issue it a painful bulging area with the lower part of the expander. My PS was worried that there could be a fold in the expander, and is hoping the last fill takes care of it. It hasn't taken care of it yet, and is still painful.
I just want things to work this time. If not I will have to decided between the flap surgery or having the right breast removed and just going flat.
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MaryToU, wow. I have NEVER heard of a drain being put in after the initial surgery. As a matter of fact, I've never heard of anyone NOT having a drain inserted during the surgery in the first place. Honestly, if I were you, I would tough it out with that drain as long as you can. After my initial BMX and TE placement I had my drains for seven weeks and my PS only reluctantly took them out at that point.
Also, don't give up quite yet. There IS hope after an infection. I had two and was able to eventually have successful exchange/implant but it was a long road and I had to fight and claw for it every step of the way.
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MaryToU- I also have never heard of drains being inserted after surgery. I would not recommend removing them yourself either.
My surgeon did not do any fills while my sugery site was still draining or I was exhibiting and difficulties in healing.
I had terrible problems on my right side. I almost lost that implant. The skin and circulation on that side was simply not as superior as as the left. It took me months to get rid of the poking out of expander as you describe. I still have it slightly, but I am finally almost filled to capacity on that side. My surgeon was concerned she may have to do lattisamus procedure on that side to get to my original breast size, but we went slow and all is well. The skin on that side is just thinner, but over time it’s plumping up on its own!
There was never any pain in my bulging area of tissue expander fold. I hope you can find some relief with that!
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