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TE TROUBLE

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Comments

  • Tatina123
    Tatina123 Member Posts: 312
    edited October 2011

    Saw the PS and the new TE will go back in 3 months.... The last drain comes out this Friday. For the other foob, now I am on a weekly scar treatment of vitamin E oil. Apparently, so they say, it makes a world of difference.



    Can anyone out there share what the recovery time is like for a new TE? And do I get those lovely drains again?



    Thanks for everything,

    T

  • specialk
    specialk Member Posts: 9,258
    edited October 2011

    tatina - I was sore for about 3 weeks, no drain.  My TE had been out for 8 months, and while I had massaged there was still some scar tissue which PS did not disturb too much, trying to be cautious.  I have to say that I did have a 72 hour period (over a weekend, of course) where I did have some pretty severe pain that only went away when I laid down.  I had all the leftover Vicodin from BMX and I was taking it around the clock.  Then suddenly the pain disappeared.  I think something was being pressed on or pinched directly down from the underarm, between the side of the TE and my ribs.  My PS had me come see him on that Monday afternoon to check it and he had already booked the OR - I would only have had that new TE for less than a week!  Fortunately, the pain left and I got to keep it!

  • Kyta
    Kyta Member Posts: 273
    edited October 2011

    Survivor - sorry about your appt. You must be so frustrated. Hoping your 2nd opinion appt goes well.

    T - regarding recovery time, my PS wrote a note for work giving me 1 month. It was generous but I didn't argue. A couple of weeks is probably enough, but I would have found it tough in the summer time to dress for work because I was still too sensitive to wear a bra/prosthesis to hide the lopsidedness and didn't start fills for about 3 weeks post op. And yes I did have a drain although I don't think that's the case for everyone. 

    chick - hope you're soreness is getting better. Aren't you almost due for another fill or are you done?

  • ShaeG45
    ShaeG45 Member Posts: 21
    edited October 2011

    Hello to everyone.

    This is my very first post.  I have been preoccupied with reading all of your posts which have been very helpful and interesting! So, I finally logged in and thought I'd share a bit of what I'm going thru right now with you.

    I had BMX last Oct 1, 2010 and choose delayed reconstruction for 2 reasons, first my surgery was done on a military post that has no PS, and second I hadn't made up my mind what kind of recon I wanted at that time. That surgery was pretty uneventful aside from an infection about 2 weeks after but, was caught an treated via IV antibiotics. Then back at work in no time at all.

    So, recently (Aug 24, 2011) I had tissue expanders placed. Not knowing exactly how much pain was involved. My PS gave me mentor 800cc TE's and filled to 360cc at the time of surgery with the use of Alloderm. Yes, very painful for 3 entire weeks!! I was contemplating having them removed and saying 'never mind'! But soon the extreme pain subsided and everything was going smoothly after the drains were removed until I had my first fill. The left side developed a seroma about a week later so the PS made a small hole to let it drain, which did help. About a week after that it closed up and I thought "yes" now we can move forward!  I must have spoke too soon because over this weekend I developed (what looked to me) a hematoma which was close to where the seroma used to be..

    I called yesterday and was given an appointment this morning for the PS to have a look at it. But, as soon as he saw he said "Oh crap!"  Which is not what anyyone wants to hear any doctor say!  Apparently I have an exposed TE.  That little round area is the TE looking at us and not a hematoma at all.  I did not know there is blue dye inside the TE. Which I thought was possibly a clot.

    So, Now I am heading to surgery in the morning for him to fix this issue of the week. 

    Well Thank you all for listening! Let me try to get a little sleep if I can.

    Stay strong ladies

  • Tatina123
    Tatina123 Member Posts: 312
    edited October 2011

    My thoughts are with you, Shae....



    Hugs,

    T

  • survivor11
    survivor11 Member Posts: 430
    edited October 2011

    Momof3-how long has your TE been out.

    SpecialK-why did they wait 8 months to replace TE.

    shaeG45-so sorry your going through this crap. Good luck with surgery tom and let us know how your going.

    Okay ladies so I'm still struggling with the length of time first PS said it would take to replace TE. Don't understand the length of time since there was no infection and don't understand having to have it in 4 months no matter the length of time for fill before I can get exchange. Wondering if any had TE put back in sooner and the length of time you ladies had new TE put in before exchange was done.

    I'm also really struggling about work. I have been off since May since I'm an OR nurse and there is no such thing as light duty where I work. I really want to go back but I am now on long term disability. If I go back now and wait for however long it takes to replace TE, then when that time comes I will have no sick leave built up and then again that will happen with exchange. Plus PS keeps advising me to baby the Right TE and then the Lt when I get it back in. How am I suppost to do that while moving asleep patients, preping patients, etc. Any oppinions would be appreciated, don't know what I'm going to do.

  • Tatina123
    Tatina123 Member Posts: 312
    edited October 2011

    Survivor,



    What reason did your PS give you for the 4-month wait? Today, my PS said the longer you wait for the TE replacement, our tissue has the chance to get stronger for the blood supply we need for the new one.



    As for your work, is there any way they can "change up" what you do on a temporary basis until this is behind you?



    T

  • specialk
    specialk Member Posts: 9,258
    edited October 2011

    shae - oh crap is right!  I also had a ruptured necrotic area that the TE came through.  My PS tried to repair 4 times and then the TE had to come out.  We all feel you on this - it truly is the foundation for this particular thread.  Keep us posted on how you are doing and please know that we are all thinking of you right now.

    survivor - I had 4 surgeries that followed my BMX, axillary lymph dissection and 3 surgeries to try to fix the ruptured necrotic area on my left side.  I was delayed in starting chemo by these surgeries so the decision was finally made to remove my TE since I couldn't seem to heal so I could begin chemo.  I needed to heal from the last surgery for about a month before they started chemo, had chemo, and then needed about six weeks after chemo before they could put the TE back.  All together it was about seven and a half months.  Is your long term disab through your employer or state?  Did you do FMLA first or short term disab?  I was off a long time - first FMLA concurrent with short term disab, then an ADA leave of absence concurrent with long term disab.  I also worked in a hospital in transfusion services - very fast paced and chaotic.  I went back 3 weeks before they put the TE back, just 30 days after the end of chemo.  I couldn't handle it and resigned.

  • debbiey
    debbiey Member Posts: 43
    edited October 2011

    Hi Survivor My PS did exactly the same thing to me. He said 3 months and then moved the goal posts to 5 months. It was as upsetting as when he told me it would be 5 months as when I was told the TE had been removed. I believe they have no idea how we hang on their every word and if they say 3 months it means 3 months to us not a  week or a day more. Two months in a normal persons life is nothing but to us it is an eternity. He would have been better saying 5 months at the beginning. I had come to terms with 3 months and now I have to get my head around 2months more and the fear he may add more time later. I dont think they appreciate all the other stuff we have been through and our need to feel normal.

    I am in the same boat as you with work. I am just going to have to stay off on LTDB because once I get back I will have no sick leave available if I need it and I really dont know when all this will be over. A few of my friends have gone back to work and it has just been too early and they have ended up in  a mess. So my plan is once my wound is healed to try to forget about things enjoy Christmas and start again next year. Work will have to wait.

    Let me know what your second opinion was.

    Debbie

  • survivor11
    survivor11 Member Posts: 430
    edited October 2011

    Thanks ladies for the comments. It is good to be able to share this with women who get exactly where I'm at. It does drive me crazy that alot of PS's don't seem to understand why every day they delay our being "normal" is so hard.  It's just days, or months to them, but our whole lives are upside down. I know that we never know what our futures hold, hell I think the last 7 months have proven that, but to psycologically heal we really do need some sort of plan/goal to aim towards. I really wish that for just one day they walked in our shoes and knew what if felt like to be "not whole".

    Can't wait for 2nd opp. Don't even care if he says the same thing, just need affirmation of why I'm going through all this. I'm off to try to collect me medical records from the two hospitals where I had my surgeries-should be fun-wish me luck.

  • momof3infla
    momof3infla Member Posts: 333
    edited October 2011

    Shae, so sorry you are having these TE problems but you are in the right place.  I wish they would have told us from the beginning that we WILL have problems and to expect them.  Good luck - it's a long road with many bumps, but we must have been chosen for some reason.  We will prevail!

    Survivor, it will be about 6 months when the right TE goes back in on Nov 30th.  My PS was adamant about waiting the full 6 months.  I'm starting to get anxious and have started Christmas shopping and even WRAPPING!  I'll be down and out for at least the first 2 weeks of December. Good thing for online shopping, huh?  LOL I'll be shopping on pain killers - wonder what kind of stuff my family and friends will end up with!  HA!

    Tatina - one day at a time is all we can do. Stronger every day with more patience than yesterday.

  • momof3infla
    momof3infla Member Posts: 333
    edited October 2011

    Survivor, one more thing.  I'm going on 6 months without right TE.  Lefty has 2 fills left, so I'm so lopsided.  I have a prosthetic on right side.  I walk/jog/bike with my kids everyday, I go to my boys baseball games, and I'm about to head out to spin class.  You cannot tell AT ALL that I am flat on the right side.  I even swim and sit in the hot tub with the family every weekend.  My life really has not changed.  In fact, I won't let it change it.  I still do almost everything that I did before, and nobody has any idea.  We even went to Vegas a couple months ago - I rocked a bathing suit at the pools and nobody had any idea.  It actually went by very quickly and I can't believe surgery is next month.  If you need info on which prosthetic and bras I'd be happy to send you the info. 

  • chickadee521
    chickadee521 Member Posts: 423
    edited October 2011

    Survivor - since I had just sprung a leak I was able to get my TE replaced right away.  I was done with fills almost 2 weeks ago and have exchanged scheduled for 11/14.  I think I could have had it sooner but we are leaving for Jamaica next friday.  My PS likes to wait at least 4 weeks from final fill to exchange, but I know someone on here has to wait 3 months and someone doesn't have to wait at all.  Can't remember who it was, just remember how odd I found it that there was no standard protocol.  Also, at the last 2 appointment he decided to fill the old TE a little.  I am guessing to break up scar tissue?  That is the one that has been bothering me and the one I might ask him to take some out of this friday when I see him.

    Mich-I am done with fills, whether the PS likes it or not!

  • Rennasus
    Rennasus Member Posts: 642
    edited October 2011

    Shae, please let us know how your surgery went! You came to the right place. We all get it!

    Chickadee, you are moving right along, that is great! 11/14 will be here in a flash.

    Momof3inFla, your TE goes back one a day before mine! Can you share your prosthetic/bra info?

    Survivor: I agree, PS's don't tell us everything that could go wrong. (If they did there would be a lot more women who chose no recon!) I have had to suspend my expectations with this entire process. I no longer have any idea what will happen or how I will end up looking. Just trusting my PS to get me there.

    Debbiey, I feel your frustration! I am trying to get my Xmas shopping taken care of before end of Nov. Am bummed I have to go through another Xmas dealing with BC.

  • momof3infla
    momof3infla Member Posts: 333
    edited October 2011

    There is a place here locally called "A Place for Her".  I have also purchased items from a website - am I allowed to say what it is on here?  I can private message survivor and Rennasus.  I have the Amoena silicone triangle/teardrop shape and it's awesome.  You can exercise, swim, anything and nobody can tell.  It even feels real!  Rennasus, we will definitely be in touch during recovery!

  • debbiey
    debbiey Member Posts: 43
    edited October 2011

    Oh no dont say there will be confusion about how long after the TE has been refitted it can be filled  and confusion over how long after the filling it can be removed! I know medicine is not an exact science but surley there is a proven process that all PS should follow. I feel like I should switch off my brain and let doctors take it over until I am totally rebuilt as I have lost control of my life it is all in their hands.

  • Lifeafter
    Lifeafter Member Posts: 298
    edited October 2011

    Hello ladies, it has been awhile since I've posted in here.  I've been dealing with a lot of stuff.  Things have just been, bleh.

    Anyway, I got for my pre-op appointment this afternoon.  My surgery for TE replacement has been set for October 28, exactly 3 months from when my PS removed the TE from my infected side.  I was able to scan through a couple pages of posts.  I don't recognize any names. :(  Anyway, I have the kind of dr that is very conservative.  I know I will have drains when I wake up.  I will find out today how long he expects me to be down.  I'm thinking a week.  I've made arrangements to take two to three days off work, I have close to zero time due to all the surgeries I've had in the past few months.  I will be working from home about 3 days.  I'm lucky to have a very supportive office environment and management who is willing to do whatever they need to accomodate me.

    I have alot of fluid build up in my left side where the other TE is.  It hasn't had a fill except for the initial fill they did during my BMX surgery.  My PS said he isn't concerned, that when he starts filling it, the fluid will push out.  But he's not going to start filling it til my other TE is filled to match and then he will fill both at the same time.  Should I ask him to remove some of that fluid during this surgery?

    I'm just now able to sleep on my sides, albeit still uncomfortable.  I have horrible shoulder and neck pain from my sleeping positions.  Anyone here have a solution for that?

    Michelle

  • momof3infla
    momof3infla Member Posts: 333
    edited October 2011

    Hi Michelle, our situations are very similar.  I had right TE taken out almost 6 months ago due to infection.  We were not filling the left one since we were trying to wait until the right one was replaced.  I also had a lot of fluid buildup in the one not being filled.  I had to have it aspirated off (and had a drain left in for 3 days).  Fluid was sent for culture - no infection.  My PS said that since the TE was just kind of sitting there and there was space around it, my body's natural response was to fill the space with fluid.  So what we had to do was start filling it.  Sure enough, the fluid went away.  Unfortunately now the left one is almost full (2 fills to go), and we wait for Nov 30th surgery to replace the right one.  It is what it is, and I guess we just do what we have to in order to get that end result.  Laughing

  • Tatina123
    Tatina123 Member Posts: 312
    edited October 2011

    Hi Michelle,



    Have you requested a possible ultrasound for that fluid build up on the other side? Perhaps aspirating it might be a good idea and more comfortable for you, too.



    I know you'll get more good ideas from everyone else.



    As for your neck and shoulder pain, would it be better to prop yourself up a little higher (imagine lying on mini wedge made out of a few pillows) to take the brunt of the pressure off your neck and shoulders? I have chronic pain in these areas and actually have a water pillow that helps a lot....



    Take care,

    T

  • psalms91
    psalms91 Member Posts: 93
    edited October 2011

    Hello everyone, i had a bmx with reconstruction in july 2010, removal of non diagnosed expander in june2011 due to a gram negative infection.Today and yesterday i have been feeling like something is crawling in the left side that still has the expander,some pain on and off.No redness,or fever.Feel slight ran down, could be due to weather,hot and cold.I feel cold like symptoms.I am so paranoid.Whit count 2 weeks ago was within normal range, that was just a routine check, had nothing to do with left side expander.Has any one had both expander get infected at different times.This expander has been in since july 2010, with no fills, just the 300 from surgery.I have always felt uncomfortable and never went through with fills.I just have a funny gut feeling.I just dont understand what to do.I have an appt Friday with Plastic.Cant expander stay in a while without complication,or is there a time limit.PLEASE RESPOND,ALL HELP NEEDED.

  • momof3infla
    momof3infla Member Posts: 333
    edited October 2011

    Psalms91...Good thing you have that appt with PS Friday.  You may have some scar tissue formation, or some fluid buildup (see my previous post about fluid) and may need to start filling that expander.  I started to have problems, but once it was filled to capacity, it seemed to get better.  Yes, I've been lopsided until I can get the right one back in, but the prosthetics are amazing. I'm with you about being paranoid about everything. I get a headache and start freaking out lol.  Good luck at your Friday appt.  Keep us posted. 

    I'm just a chatty Cathy today, aren't I? 

  • ginger48
    ginger48 Member Posts: 1,437
    edited October 2011

    Hi Michelle, I also have horrible neck and shoulder pain from sleeping. It is actually impacting the muscles all the way down my back. I have been taking a hot bath just before bed and another one right upon waking up. Also taking a valium to sleep and can only sleep on my back. Side sleeping causes spasms.

    I was talking to my PS about it today and we will order PT after I heal from exchange surgery which is 10/27. She said we could have ordered it earlier but since it is close to exchange I need to wait. You might want to ask your dr about PT to deal with it after your surgery.

  • Lifeafter
    Lifeafter Member Posts: 298
    edited October 2011

    Bleh, another drain?  I'm already gonna have a couple others when he puts the right TE back in.  I'll ask him and see what he says about asperating it.  He's informaed me about the fluid build up in the pockets.  I just don't know if "d be asking for more uncomfortableness by having him asperate it.

    A water pillow, huh???  Hmmmm...I need to look into that!  Thanks!

    pslams91 - It doesn't hurt to get it checked out.  It could be nerve regeneration.  I've had those same feelings too and I just got used to it.  I try rubbing or scratching but it doesn't help cause I can't feel myself doing it and it just aggravates me further.  But, if you've got that funny feeling better to have it checked.  At least you'll have some ease of mind.

  • Lifeafter
    Lifeafter Member Posts: 298
    edited October 2011

    Hi Ginger48, I've had PT and stopped.  It was only giving me relief for the time they were working on me.  Three times a week at $15 copay, wasn't worth it.  So I stopped going about a month ago.  But it's gotten to the point where it's just unbearable.  I'm back to where I was after the BMX and dreading going to bed.  I have a nice bed too!  I am going to ask if they'll do an MRI just to see if something is out of whack.  Cause I can't see taking a pill every signle day for this.  I've been using my muscle relaxers sparingly and only if I absolutely can't take it.  Even those aren't even working.  I'll ask for a higher does.

  • psalms91
    psalms91 Member Posts: 93
    edited October 2011

    Thanks everyone for the response, yes i pray that all is well on Friday but until then i hope i dont worry myself sick....I will keep you posted.If anything changes before then i will definitely hollar

  • specialk
    specialk Member Posts: 9,258
    edited October 2011

    mrochon - good to see you!  Sorry you are having sore muscle problems - I echo the hot bath/shower thing, that is what I do too.  Also relaxes your whole body and it helps me fall asleep.

    psalms - let us know what your doc says.

    ginger - how exciting you are so close to exchange!

    debbiey - yes, it is true - they all have different time frames for time until fills, time from fills to exchange, etc. - don't really know why, I guess they come up with their own ideas based on experience.

  • Kyta
    Kyta Member Posts: 273
    edited October 2011

    Hi all

    So many posts, that by the time I start writing I can't remember who said what:)

    I did not have fills in my good TE side for about 7 months during the other side's infection, removal and re-insertion and had no problems with fluid build-up or anything else.

    Hi Michelle and welcome back. Glad to hear you're about to have the TE replaced. Hope all goes well this time. 

  • survivor11
    survivor11 Member Posts: 430
    edited October 2011

    Need some advice ASAP. Have been feeling out of it the last two days, run down and  really achy with alot of back pain-feeling just like I did during chemo. Tonight I started running a fever. First 100.5 then 101.8. Not sure what's going on. Any advice?

  • specialk
    specialk Member Posts: 9,258
    edited October 2011

    survivor - maybe the flu?  Tylenol and rest, wait for some more symptoms to see if it manifests in the tummy or respiratory system.

  • Lifeafter
    Lifeafter Member Posts: 298
    edited October 2011

    I'm home.  My Dr said the fluid build up in the left side is still ok.  In fact he said it was good because it's keeping my skin pliable and healthy.  He sees nothing to worry about it.  He's calling in all my scrips and will send me out for an xray on my neck.  I've got a lot of scar tissue but he will be cutting alot out.  He said when the expander is put back in, as he fills it, it will force the any other scar tissue in the area to break up as the skin stretches out.  I'll be off of work the month of November.  I told him I was thinking it would only be a week...  I didn't take into factor the cutting out of the scar tissue and this is my right side, I'm right handed...and I drive a stick shift.  Great.  So I will be talking to my boss tomorrow.  Luckily my office and coworkers are all extremely supportive.  I don't see it as a problem, I just feel guilty.

    survivor - I'm paranoid after all of this too.  I would call your Dr.  With all we've been through, fevers aren't really something to ignore.  Like SpecialK said, monitor your symptoms.

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