TE TROUBLE
Comments
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Jenni, I didn't have pain after having the drains removed but have heard that fluid buildup after drain removal can be painful. Does it look like that is what is happening? If that is the case, the fluid can be drained with a syringe by your PS.
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Jenni, I had pain after drains were removed last time, but my fluid was infected. It got red and I had a fever. Yours is probably just extra fluid, very normal. Watch yourself very carefully for any signs of fever, hotness or redness. Get up and moving, and drink lots and lots of fluids. I'm getting my drain out Monday or Tuesday and I'm sure I'll be a bit uncomfortable from fluid buildup as well.
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Hi ladies, I am almost 6 weeks post bmx w TEs. My first tx was delayed a week when one of my incisions reopened. Saline was also removed from both to allow for restitching and symmetry.
I am due to have a fill next week, and maybe I'm just a big wimp, but between the SEs of my first tx AC, I find the discomfort of these TEs more than I want to deal with. They feel like 2 rocks that are moving under my arms. interfere with sleep and motion, and although I can't have them removed now, I'm wondering if having even more saline would alleviate some of this.
Thanks for listening, my family doesn't quite know what to say.
Laura0 -
Thank you DLL and momof3 for your insight and what to watch for. I really appreciate your help and hopefully it is just the extra fluid in there. Good luck and good riddance on getting your drain out on Mon or Tues.
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Seacretgardn-i cant speak for anyone else, but the bigger mine got the more awkward it was. Mine were never panful, but uncomfortable when sleeping etc. I usually didnt wear a bra and did ok, but when I did, I found a bra that kept them snug felt better.
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Secretgardn - I agree with fluffqueen. Mine feel better when I wear something snug like a sports bra. I tried going without one day last week and had to come home and put one on. I do sleep without. I am never comfortable when I sleep. I am a stomach sleeper, so that's not happening! I think feeling like rocks is just the nature of the beast. Mine have been in since July 14 and there is not a time I am not aware of them. Not necessarily pain, just always a little uncomfortable. My exchange surgery is scheduled for December 23 and it can't get here soon enough. Hang in there.
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Momof3: I feel so much better with the drain out! I am still expressing fluid from the drain area (which PS said would happen for a couple of days). I am actually happy my body is still "getting rid" of it (I'm wearing multiple layers of gauze and then paper-taping them to my skin; luckily i don't have the tape sensitivity issue that many of you have!). Last time (going back to my BMX in Feb), my excess fluid was finding its way out via my incision line, so it never healed. I am hoping that my incision heals well as my body reduces the fluid output. will see! I see PS again on Tuesday.
Mich_M: My PS always puts me in a Jobst compression vest. It helps with the swelling. (It acts like an ace bandage). I wore one (I actually had 4, this is my 5th one!) for 5 months so I got used to it. It just really limits what i can wear on top. Button-downs are the only thing that works.
Jenni: You said you got your drains remved but have more pain. Where is your pain? is it where the ports were? Or elsewhere?
Oh I remember when I first had the TEs I couldn't go commando. I HAD to wear my vest 24/7. The feeling was too weird! Eventually you get used to the feeling... not that it ever feels good!
Tatina and JBennett, you guys are up next with surgeries! Hope you are not too crazed getting things ready before the holidays (like I was).
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Jbennett... my my ps could only put in a 425, due to a thin skin area where the infection was. he wanted to do 450 or 475. I am also a stomache sleeper and GOOD NEWS....I can sleep on my stomache with the implants. I do still use a taller pillow to not be laying flat on them, but ps said it is no problem. It feels so good to be on my stomache again. I was ok sleeping on my side, but when I had to sleep on my back after mastectomy, I required about half an ambien to get to sleep.
So, there is hope!0 -
secret - I noticed that whenever I had a chemo tx it would get tight around my TE like a vise grip for about a week, then it would relax a bit until the next one.
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Ladies thank you as always!
SpecialK that is just what I'm experiencing now! I feel like my chest is in one big spasm. Combined with the sternum achiness from the Nuelasta, it feels like a vice grip around my chest.
I'm hoping the 12 taxol txs don't have the same se.
Fluff queen and jbennett, I can't wait to be able to sleep on my stomach again! Something I never even considered when making this decision. Sure wish I'd had all this great insight prior to. As it was, I argued against the same day recon, foreign objects for the body to deal with, more surgery later, etc, but was told this would be part of my "recovery" . Maybe.
But right now being semi comfortable sleeping and moving would, in my opinion, been more valuable toward my recovery.
I'm happy though that many of you had success and are pleased with your result.
Laura0 -
Hi secretgarden and others on this thread:I had my first fill of my TEs last Thursday and was surprised how much discomfort, tightness and soreness I had afterwards. I only had 50 ccs so didn't really expect to feel such an impact. On the bright side - I am feeliing a bit better today.I can only surmise that each fill is going to be followed by about three days of feeling lousy. Is this what others have experienced? I am having fills every week - 50 ccs at a time. Some have suggested to me spreading the fills out longer, like to every other week. This is appealing in some ways - although it also means that I have these torturous tortoise shells on my chest that much longer. I didn't expect the aftermath of getting a 50 cc fill to be as significant as it is. I guess I am also concerned in that I hear the later fills are even more painful because you are that much tighter/fuller. I thought I would adjust/get used to these TEs. I am not doubtful that will happen.Don't mean to be complaining. I found the post-op after my BMX to be much more tolerable than I had expected, and the fills to be harder! Wondering what other women have found. Does wearing a bra really help with TEs? It is hard for me to imagine how that would be...?0
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If your fills are causing pain, ask for a muscle relaxer like skelaxin. i did but rarely needed it.
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Hi Ren,
How did you know that I'm going through the holiday craze right before my TE procedure? Boxes on the floor to be mailed tomorrow and a full work week (and the weekend) to get things ready before my new TE. I usually get ready like this if I'm going on vacation.....this is no vacation but I'm so happy to be getting my TE back and the nerves that go with it!
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Rennasus- the pain is along the inner edges of the te..just tightness and feeling like the te is going to break thru the skin. It is slightly better today, so maybe it was the extra fluid in there after getting the drains pulled. I am also curious what kind of vest you had to wear during the the te phase? I have been wearing a soft amoena cami, but today tried a soft sports bra. I am not sure if more support will help or hurt with the pain. My ps didn't say what to wear on a regular basis after the drains came out.
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Yes, I had a lot of pain the days after my drains were pulled. It took me at least a few days until the pain lessened up, but it did go away. I think I even took prescription pain pills a few times before I knew if it was okay to take Advil. I'm hoping you will notice some improvement soon!
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Tatina, don't know what I was thinking having surgery before the holidays! Did *not* anticipate all the work I needed to do/get done prior to! I will say that I feel strong enough to wrap presents (wasn';t sure I would) and am back driving tomorrow. So not bad. (In other words, I didn't need to drive myself so crazy getting everything done. Only the first 4-5 days were bad).
Jenni, I had pain where the new TE presses against my chest wall. It felt like a corner of the TE was pressing against it. It hurt really bad the first week, but the pain has since gone away. healing I guess! I would call your PS's office and ask the nurse what they want you wearing. The compression garment I wear is the Jobst Surgical Vest with cups. My PS puts me in it at the hospital. 5 times now.
amsk: Yes, I would agree (as would most ladies on this particular thread!) that the TE process was worse than we imagined!
summer2recover: Was your pain where the drain was?
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Yes, it was right across the entire area both sides from where they were pulled. My first two were taken out at first post-op appointment without a problem, but the second two were really painful afterward. That was a surprise. I also was getting sore at the spots where they were stiched in and also started getting itchy and almost a heat rash around the tube.
I had two drains at my exchange for just a week and didn't seem to have that same kind of pain at all, although one had already started to feel like it was pulling and sore at the point of entry. I'm one month out from exhange & agree with the majority of people who say it's much less painful and easier to recover from than the BMX. I will say that I am still having some good old fashioned discomfort, especially around the edges of both implants. I did have more Alloderm added at exchange so I'm guessing that may have added some extra stitching internally that needs to heal- but that's just a guess. I also think I may have pushed it just a little by going to a exercise class that uses light weights with lots of repetition after 3 weeks (even though I thought I was taking it pretty easy).
It looks like you have been through a lot with all those surgeries so I imagine your body is getting awfully tired of all this action. Hopefully the pain will keep on staying away and the rest of your TE process will go smoothly. I HATE wrapping presents....I always lose the tape!
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Jenni-my problem with the bra after the drains were pulled is the band went right across that area and it was really tender. So usually I didn't wear one. I wore those camis a lot also. I decided to enjoy the fact I didn't need to wear a bra, so I didn't!
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Yes Renn, I am going nuts trying to get ready for the surgery and Christmas. I keep walking through my house mentally making lists of what needs to be done in each room. I doubt I will get it all done. If you remember, I originally scheduled my exchange for December 12 (tomorrow). There is no way I would have been ready! Actually I am glad it had to be rescheduled. I have heard there is an outbreak of scabies in the ORs and ED of the hospital where I'm having my surgery. I'd rather give them time to get it under control!!
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AnnAlive - we haven't heard from you for days. Are you okay?
I had the same post IV needle pain and what I almost thought were infections growing in that area.I hated the long second needle they used and scratched the arm area for 2 weeks after removal.
I'm still on antibiotics and keeping the faith that I'll be infectionless until my exchange on Dec.22nd. Wish me luck please. Actually, it's not luck but rather being in synch with God's plan. I have still turned it over and surrendered so ready for anything. One day at a time!
Hugs to you all,
Kat
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Good morning ladies! Supposed to see PS today at 11:30 (I rescheduled it from Friday because drain output was still too high). Not sure if she will want to see me today to take the drain because output from the past 2 days was 45 and 40 cc's. She wants 30 or less for 2 consecutive days. Really?? I thought for SURE it would be ready to come out. I'm so bummed, but we'll see what she says. I don't want it in for too long. Wed will be 2 weeks from when I had the TE surgery. She said she broke up a lot of scar tissue, and that does cause extra fluid, but still.....please take it out!
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Good morning.
I had Unilateral Mastectomy in May of this year with Tissue Expander. Due to infection, it was removed in July. I went on to finish chemo and am now going through Rads, hoping to reconstruct some time next year.
I've been reading the threads...everyone is so good about sharing their experiences. All the posts have been really helpful on this difficult journey.
In considering a Lat Flap, is that normally with a repeat tissue expander or with an implant? And do PS usually do a Lat Flap sooner than 6 months after Rads?
Any answers or direction would be greatly appreciated.
Thanks,
TTay
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I had a BMX in March & finished rads in May.Had a lat flap on the rads side w/placement of TEs in July. I had second lat flap due to a skin failure on my non-rads side along with placement of implants in September. I have had healing issues on the rads side & currently have 1 implant & am awaiting replacement of the one on the rads side. The healing issues are unusual, but not rare, supposedly.
Depends on the PS how soon after rads they will work on you.
Hope you get that drain out soon, momof3!!
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Fluff queen- thanks for responding...I am going to be back in the cami's.
Another question..is is normal to feel the edges of the tissue expanders? The one side seems like it is protruding almost and causing pain. I haven't had my first fill (he filled me with 200 at BMX) will this te pain and feeling like they are going to bust out get worse after the fillings start?0 -
DLL66 - Thanks for your response.
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Momof3: I hope they pull that drain! I had "leakage" from the drain hole ... enough to soak through 4 layers of gauze every few hours but that slowly stopped over the weekend. Now, the hole is sealed. My body will absorb whatever it is still making. Incision (knock on wood) looks good but steri-tape still covering it. I am not getting it wet until PS gives me the go-ahead tomorrow. Have been doing up and down showers, no full-body.
Jenni, I think this is pretty common. But as with everything on this journey, if it seems worse or is too painful, always check in with your PS. they really do want to know if things are going as planned.
Katarina: Sending MUCH LUCK your way!!! ;-)
JBennett: Glad you have until almost Xmas to do everything you want to get done! Then you can relax! (Nothing like a little surgerie to get us to finally stop and do nothing!). Scabies? Really? Yuck! Hopefully that is under control at the hospital. (Who let that one out?)
Summer: Take it easy, your body needs to work around the Alloderm and incorporate it into your tissue. Drinks lots of fluids and try and make sure to nap! I have been getting lots of naps in. I am feeling stronger this week, will make my first foray outside (and driving!) this afternoon.
AnnAlive, yes, please check in!
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PS Ladies make sure you are eating LOTS of quality protein for healing! 100 grams a day!
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Well the PS didn't even want me to come in today since I'm not at 30cc's for 2 days in a row. I'm at like 40-45, but it seems to be slowing down. Zero pain. We made an appt for Friday to most likely remove the drain AND to start expansion!! The nurse said that many times once expansion starts it squeezes the excess fluid out. Makes sense. I have not showered yet, Renn! I take a shallow bath and shave legs, then later in the day I wash my hair in the kitchen sink. (I have very unruly curly red hair). I have been given the go ahead to shower but will not do it with that drain in, no way. My incision looks great, no steri strip on it just a surgical pad and wrapped tight with ACE bandage.
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Jenni...on my good side when I first got TE put in the inner left corner felt like it was digging into my chest wall. I just massaged it real good and after a few fills it worked itself out. I know exactly what you're talking about though.
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Katarina & Rennasus -- OK, here I am, not keeping up very well. It's going on 3 weeks since my Thanksgiving-eve TE replacement due to infection. I went home on IV antibiotics and just finished those on Friday. I had a 110 cc fill to the new TE a few days post-op to expand a bend out of it, and then 60cc fill on Thurs, and my drain output shot up from 19 to 28cc/day, although it wasn't decreasing as quickly as my PS wanted anyway. I saw him today (Mon) and he was disappointed that the output is still over 20cc/day. Also, I have developed a small pink spot over the beginning (not exit) of the drain tube, which is a concern. My infectious disease doc, whom I also saw today, is also concerned about my C Reactive Protein level being high, indicating an increase of inflammation. So, am I getting (or continuing) an infection around the replaced TE? Time will tell. My PS wouldn't give me a fill, nor remove my drain, nor remove my stitches today.
The infectious disease doc prescribed Zyvox, a very expensive antibiotic that my insurance won't authorize unless the doctor justifies it. I will have to find out tomorrow whether he will pursue that (and lose more time getting me started) or switch to another antibiotic. My wound culture had grown diphtheroids, a skin contaminant that is more antibiotic-resistant than other typical surgical infections, he said. Lovely. I did test negative for MRSA.
Isn't it interesting the different standards the PS's have for how much drainage is acceptable before removing a drain! I'm amazed at how much some of you are going through and just keep on trying. I guess we don't have much choice -- if something goes wrong, we have to get it fixed, don't we. I have a pretty clear schedule through New Year's (no family coming to town) so I don't have as much to worry about with wrapping presents and all (we called off exchanging gifts with some of the relatives this year). I'm praying that I can keep the replaced TE and not have another infection, and that all of you here on this thread will continue to heal and get your troubles resolved.
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