TE TROUBLE
Comments
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chick - about the article - it is like air in a spare!!! That is crazy!
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Sundermom, Tatina123: Welcome!
Just_V: Getting close! I am excited for you.Chickadee: Enjoy Jamaica!
Special K: The chilling out is the hardest part!
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ren - I am not even chilled out when I am asleep!
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Have a great trip Chick….I enjoyed Jamaica last year and hope you will too.
Hi Sundermom and welcome.
Just_V…best of luck with your upcoming surgery.
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Thanks all. We are in charlotte now. Very tired because we stayed up to watch most of the game last night. We went to bed in the 8th so we thought they lost! Good luck this coming week with all the appointments.
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Good luck Just V! Will be thinking of you:) Had a good friend from high school that had her BMX this past Tuesday. They took out the size of a lemon from her lymph node. Very concerned:( The 3 day is here in the Tampa area this weekend, and I keep getting pics of the team who's walking in my honor (and for many others). Going down on Sunday to one of the cheering stations with my middle son. I think I'm going to be a basket case, it's so beautiful and overwhelming. Happy Friday everyone!
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Chick: Have a great trip!!!!! We stayed up til the end last night (12:45!!!). What a game. Go Cards!!
Just V: I am excited for you - I have been doing lots of reading on the DIEP, plus a friend is now about 4 weeks out from her uni...I know you'll be fine and so glad you did it. I will be really interested to hear all the details. Still deciding what route to take.
Looks like lots of others are having surgery to get TEs back in, exchange, i say YAHOO!!! It's so great to see progress after all we've been through. This group is wonderful and has been such a help to me going through this.
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Hi all - having some issues today with sudden arm swelling on the upper (underside of bicep) arm of the one that has mild LE. Hurts all down the arm and the swollen part is firm to the touch. I slept with it elevated and have my sleeve on. Have done the phone call, leave a message, wait for response with both the PT and MO office. Talked with the therapist - she gave me some advice but wants me to be seen by a doc. Do we think that will happen on a Friday afternoon? Not likely. Why does this always happen right before the weekend? Arrgghhh!
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Yay & good luck, Just_V!
Have a great trip, chick! I am jealous. Someday it would be nice to have extra vacation time to use for an actual vacation & not for a surgery.
SpecialK, hope your arm feels better soon. I've had to sleep w/mine elevated as well before due to mild LE.
Hope everyone has a great weekend!
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SpecialK: Were you able to get in to see your doc? Keep us updated on the arm and hope you are feeling better.
I was so upset about the game last night...we taped it b/c my DH got home late, and since it went over (and I did not tape the show after the game), we missed the last 4 innings! They said it was one of the greatest World Series games ever! Hopefully tonight will be as exciting! (OK I know that is completely off-topic!)
Enjoy your weekend ladies! Happy halloween!
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V: My how time flies! Can't believe it's almost time for your surgery!
SpecialK: I hope your ok!
Chickadee: Have a wonderful time in Jamaica! You're sooo lucky!!
Wishing everyone a great Halloween weekend! Boo!
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Thanks for the welcome, Ren.
Chick, have a super vacation.
SpecialK, I hope you are feeling better. Please give us an update, okay?
DLL66, I know what you are talking about -- one day, we will spend money on a vacation and not medical stuff!
Went to the PS office today and the nurse checked out my non TS side. Said I have to start massaging the area a couple times of day before because it's going flat. UGH. Any ideas, ladies, on how to get started with this ever so gently? I see my PS in few weeks and I'm hoping he'll consider putting my TE back a week early for a birthday present in late December. Never in my life would I have ever thought I wanted a TE for my birthday.......man, how things change!
Have a safe, fun, and semi-spooky Halloween!
T
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momof3 - that is so nice you have peeps walking for you!
I talked to the MO nurse - doc was just going out the door so she stopped him. Basic deal - redness, fever, more pain, go to the ER. So I filled up the tub to the top and "swam" around in it, took Advil, and it does seem better after some time in the sleeve. I think it just needs more regular stretching and massage and sleeve-wearing. I just got the new set of sleeves this week so I need to get in a routine. Thanks to all for your concern!
tatina - I did massage when my TE was out kind of like self-exam. Enough pressure to feel like I was pressing but not so much that it hurt.
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Tatina: Yes, the things we now want for Christmas and our birthdays! What do you mean when you say it is going "flat"? Do you have Alloderm? My PS said I could massage or not, it was up to me. He didn't seem to have a strong feeling about it one way or another. As we have said many times on these boards, all PSs are so different!
SpecialK: I may have asked you this before, but how soon after surgery did you develop LE? And can you attribute developing it to anything specific? I know it doesn't always have a rhyme or reason and some women get and and some don't. I worry about it, have no signs of it, but worry all the same. I try not to carry anything heavy for very long on my right side, I sleep with that arm on a pillow at night. Is ther anything else preventive you would suggest? PS I'm sorry you are dealing with that on top of this!
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sundermom: I can relate! I had to have both implants removed due to necrosis! They were replaced with tissue expanders, but I developed more necrosis on one side and TE was coming through the skin! eww...Had to have that TE removed and I had a latissimus dorsi flap surgery, but decided to take a break from recon for a while and had the other TE removed also. I needed to heal...
One day, maybe next year I will try again...
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Hi Nice to meet you all. I will introducue myself. BMX 4/11 and 1 of the TE removed 6 weeks later due to an undiagnosed infection. My PS told me that I would have to wait for at least 3 months after the infection and then he could only proceed to put the TE back in doing a LD flap. Got 2nd opinion re the LD and was also told LD was necessary. Then I went for an opinion on endoscopic LD, and this third PS said LD not necessary. I had the TE put back in 2 weeks ago with the 3rd PS, and doing very well. So now I am researching silcone implants and exchange (scheduled for the end of Jan 2012), but in doing so I see on the Mentor (TE) website that TE's are very TEMPORARY, a max of 6 months! Because of the delayed recon, the TE that was not removed due to infection, will be in for a total of 9 months. Does anyone have feedback re to this? If you do or questions about my LD and lack thereof, please let me know.
Thanks, Pam
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Thanks for the advice, SpecialK. It made perfect sense. How are you feeling?
Ren, I still have a partial alloderm in there. I shouldn't have used the word, "flat." Instead, the loose skin has now retightened. Their hope that is that by massaging, I'll keep the area loose for reinsertion.
Pam, I never heard about the TE only should be in for 6 months....that's a new one to me.
Take care everyone,
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Five days for me and I am a nervous wreck. Not sure why other than I am just paranoid that I will go in expecting implants and come out with nothing. I have not been nervous at all for any of my other surgeries. I guess I am just trying not to get my hopes up too high.
I think I may skip the lipo part under my arm. I emailed him and asked him if it could trigger lymphedema since it is on the side with two nodes removed. He said while they don't do anything in the particular area, it could exacerbate it. So....I am rethinking that. It isn't too bad and I am the only one that would see and notice it.
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Hi Pam. Sorry to hear of your TE troubles and welcome to this site. There are many of us here that have had TE issues. Just wanted to let you know that I had TEs put in Nov 2010. I've had trouble with my left TE (was removed and eventually replaced), but my right sight has been in since last Nov, and is doing fine….I haven't heard about the 6 month max.
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Fluffqueen- I am 3 days out from exchange and the discomfort that I have is all from the areas that they did lipo for fat grafting, It is not intolerable just annoying since everythng else is doing so well. I think I would skip it if I was worried about LE and it is not really bothering you. Why add one more thing that could complicate your recovery? It seems to me like your gut is already questioning the decision. The exchange has been so easy otherwise. Good luck! Just my thoughts...
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Hi Newbe6 I had a TE put my in LHS last November and had it removed end of August when I had a LD flap recon. I had no trouble with the TE at all. The recon looks great. I am really pleased. My PS suggested no implants as there is an increased chance of capsulation after radiotherapy. I will have lipomodelling if I want it bigger when it settles down.
I had a TE put in my RHS at the same time as recon and it had to be taken out in September. I think it is the luck of the draw with TEs. Some times you are lucky sometimes you aint.
Hi Survivor, I had some great news from PS last week, I am trying to avoid getting over excited and just put it to the back of my mind until things are definate but I cant stop thinking about it. He has said if the wound continues to heal as it is, I will be able to have the TE replaced on 19th November! I am so excited to think it will be in for Christmas. God how sad am I to be so excited to be going in for an operation the day before my birthday but it means I will be back on the road to the end. i just hope he doesnt change his mind. He doesnt realise how much this means to me. i must try and forget about it or I will end up being devestated if he goes back to doing it next year. He will let me know on 7th November. So fingers crossed.
Have you been given any dates yet? to be honest when I got my head around having it done next year I was looking forward to a Christmas without any worries, no filling, no scar healing or threat of infection. So I hope you are feeling more positive about things. I am back on the high protien with loads of veg diet to try to give TE best possible chance next time and wound best possible chance of healing by 7th Nov.
Keep in touch Debbie
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Fluff: Can understand why you are hesitant to get too excited but I am sending good energy your way for a great exchange! How exciting. Most of the time the exchanges go just fine...just here on this thread most of the outcomes have been not that way which is why we are here.
Newbe Pam: welcome. I have had my Lt. TE (prophylactic side) in since June 2010! I am not scheduled for surgery for another 6 months, next May, so it will have been in almost 2 years. Both PS I have talked to say that is okay.
Debbie - great news regarding moving your surgery date up. Isn't it incredible the stuff we can get excited about. I was at a family party last night and my sister and niece took turns feeling the difference between my "TE" side and the silicone form side. What we do for thrills...
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Jb-i am laughing at the feeling you up story. I have a friend that wants to do that and see them. Please!
Debbiey-so happy for you! Im starting the protein thing also, and my infectious disease has me washing with hibiclenz all this week as weel as putting bactroban antibiotic goo in my nose twice a day to help ward off any chance of infection post surgery.
Ginger-my ps does fat grafting later when he makes nipples. He likes things to settle in. He would do the lipo under my armpit at exchange though. i am going to my nurse practitioner best friend best friend tomorrow to have her look at it and get a girl's opinion. I might be just getting picky now!0 -
ren - I had the BMX in Nov. '10 and the node dissection 5 weeks later. I did not have any post-surgery problems with regards to LE or cording. I did not have any arm pain until half way through chemo when my right arm swelled up from the Taxotere. I can't pinpoint anything I did in addition to having chemo that caused the problem. Just got back from taking a walk with DH and the arm swelled again. I did it as an experiment to see if I need to have Mr. Sleeve on when I walk - answer is yes. Now that I am back in the house where it is cool the swelling went down pretty fast.
newbe - Welcome, sorry you have to be here though. My right TE has been in since nov. 10 also - no problems, and it is also Mentor.
ginger - glad you are doing well!
fluff - try not to be nervous! You are going to do great!
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Everybody - thanks so much for the good wishes.. I am farther out than fluffqueen but freaking a bit too!
SpecialK {{{hugs}}} You've had more than your share of issues....
DLL66 - so my timing is actually good for once... my company switch the policy of have a block of days for everything (vacation, sick, personal) to fewer days for vacation and personal, and sick days do not count against the block of days....
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Hi Fluff thanks for the tips about hibiclenz and bactroban antibiotic. I will speak to my PS to see if I can give it a try. I will do anything to try to stop things going wrong a second time. Has anyone else heard of anything that can reduce chances of infection? I hope all goes well for you this time Fluff if you are not having any flap reconstructions you must be getting close to the end of the road. That must be a great feeling. I will be having a LD flap on RHS to match LHS if the TE goes to plan this time.
Take care Debbie
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Hi SpecialK I should probably know this, being as I have been through it. We have very similar diagnosis and were diagnosed around about the same time except I had a sentinal node biopsy and all nodes were clear. Now I was under the impression that 3 nodes were checked while I had my MX and if they were clear none were removed. Is that correct or did they remove 3 nodes and then check them to see if they were clear. I was under the impression I had had no nodes removed making my chances of LE very low. Is that right or have I had 3 removed. God I feel so stupid not knowing this but at the time I was just so glad no nodes were involved I didn't ask any more questions.
Can anyone clarify. Debbie
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just_v - thanks for the hugs - we can all use some, can't we? I don't feel like I have had any more to deal with than any of us, but I appreciate the thought! Wish I could be with everyone about to have surgery - just think of me being in your pocket!
debbiey - Here is what I am guessing for your node situation - when you have a SNB (sentinel node biopsy) they will remove the area of node(s) that the dye goes to. Sometimes that is a singular node in the little pocket of fat, sometimes it is two, three or sometimes more. This is probably why you had 3 nodes out, they just happened to find 3 together in that pocket. When they examined those 3 and saw no evidence of cancer in them, they stopped there. During my BMX I had SNB's on each side. On the cancer side they took 1, prophy side there happened to be 2. During exam in the OR on the cancer side they found no visible issues so they stopped. It wasn't until they looked at that single node from the cancer side on post-op pathology that they found the tiny cluster of cancer cells. That is why I had a separate surgery later to remove the rest of the nodes - and I had an additional, much larger (6 mm) area in one of those nodes.
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How long did/are you waiting to have TEs replaced if you had to have them removed due to extrusion? I have an appointment with the PS on Thursday and I'd prefer not to cry at his office if the answer is 6+ months! I'm still having a really hard time going from being almost completely reconstructed (nips and all) back to zip, nada, nothing on the right side. The prothesis does the job appearance-wise, but it is not the most comfortable thing to wear all day long. I want my implant back!!!
Also, any suggestions for keeping what was completely expanded skin and muscles pliable while I wait to try reconstruction again?0 -
sundermom - Mine was out for almost 8 months but that mostly due to chemo. It was removed for skin healing issues, was out for a month prior to chemo, during the 4 months of chemo, and then for 7 weeks following chemo before being put back. I don't think it would have been that long otherwise - I did not have an infection. My PS advised massage while it was out, after sufficient healing that I did not feel pain doing it. I had not had anything other than the surgical fill prior to removal.
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