continued Tissue expander pain!!

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katesf
katesf Member Posts: 139
edited June 2014 in Breast Reconstruction
continued Tissue expander pain!!
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  • katesf
    katesf Member Posts: 139
    edited February 2008

    Hi ladies: I'm now 6 wks post bilat.mastec/tiss.exp.recon. (July 31,2007) and still having so much pain. I'm having the first fill tomorrow. I've waited a lot longer than most but the PS said it would be ok. I'm just dreading this experience tomorrow due to the pain and discomfort I currently have. Ibuprofin doesn't touch it, only prescription pain meds. I'm going to ask for more time off of work because there is no way I could do my job in the shape I'm in. I'm actually considering leaving my job of 25 yrs to get through this whole experience, (fills, exchange etc.) and then find something new to do in the spring. Has anyone else had similar feelings as far as the ongoing pain and taking an extended leave from work?? Any input will be very appreciated. Thanks so much. Katie  

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  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited September 2007

    Hey Katie,

    Not sure if I told you this before but, I too am having some pain with my expanders. I'm taking hydrocodone.

    I still have 5 more fills to get to where I want to be (a small C) then, he says he has to fill with another 200 cc's after that to have some skin for nipples. I think. Anyway, I don't think my skin or ribs, can take it. It seems like my mast scar is going to rip open and.....I've developed stretch marks. Lovely.

    One girl on here told me that she actually got a broken rib from her expanders!!!!! That freaked me out.

    Anyway, I have another fill on Tuesday. I'll let you know how it goes and you let me know k??

    Hang in there girl and so will I.

    Oh and one last thing....I find that stretching...ever so slowly and gently...does help. Today I watched football all day and I kept straightening (sp?) my back, shoulders back...best possible posture ever....and holding it. It does seem to help.

     : ) Traci

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  • cheekymonkey
    cheekymonkey Member Posts: 86
    edited September 2007

    Hi Katie,

     I'm also having tissue expander pain. Everyday. I had a LAT flap on July 2nd and he put an expander under the muscle, and put in some saline. It feels so tight, like it's going to come through my skin! I feel like I have a turtle shell on my chest, too! It's very hard. I'm hoping it will get better when I have the exchange, but I can't do it until November 5th!!! ouch!

    Good luck and I hope you start feeling better soon.

    mitzi 

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  • moet
    moet Member Posts: 109
    edited September 2007

    Hi katie

    I had a tissue expander inserted nearly 4 weeks ago and I am still in considerable pain.  My pain seems to be a very sore feeling all over my expander, i can hardly bear anything to touch it, even my lightest blouse causes me a lot of discomfort.  I am begining to think that this is a nerve pain.  I have had 2 fills already and am due for another tomorrow. the only way I can describe the pain is its as if you have got a raw wound and something is rubbing it, its just sooo sore.  I am back at work but finding it difficult and I cannot drive my car yet, I just hope this will get better but I am worried that if this is a nerve pain because of the nerves being stretched will it ever go away.  Is this how your pain is or has anyone else experienced this?

    Best wishes to you, let me know how things are going  Love Moet xx 

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  • JustTurnedForty
    JustTurnedForty Member Posts: 289
    edited September 2007

    My pain actually got better after the fills.  When I only had a small amount of saline after surgery I could feel it move when I changed positions, like standing up after laying down I could feel it rush forward.  After the swelling went down it left room in the breast pocket so the implant could move & pull on the stitches that were attaching the implant to the chest muscle.  This was a terrible burning pain sensation every time I leaned forward.  After getting fills the pain went away because the implant couldn't move & pull on those stitches.

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  • katesf
    katesf Member Posts: 139
    edited September 2007

    Hey Moet: You pretty much described exactly the pain and how I'm feeling. I go in for my first fill in a few hours. I'm hoping for something to take the edge off the pain. Darvocette doesn't help and nothing over the counter. I'm going to discuss having phys.therapy, although my arms are moving fine, it's just around the entire breast area. I'm also going to continue with gentle stretching too. The only comfortable time of day is in the shower and sleeping. I don't think I'll be returning to work. That's going to be a hard call to make. That guilt is only adding more stress to this whole situation which doesn't help. My husband and friends are so supportive about my giving notice, I just feel bad for co-workers I'll be letting down. I just can't imagine dealing with this pain and focusing on work. I schedule surgeries and I know I would fall apart when that first breast cancer pt. walks into my office. Thank you again for your input. I'm sorry you ladies are suffering too. I just pray once this expander business is over and the inplants put in their place that we'll be much better. I'll keep checking this site for more advise and support. Hang in there. Somehow we WILL get through this. Take care and God Bless. Katie   

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  • katesf
    katesf Member Posts: 139
    edited September 2007

    I've read about another woman who said the same about the fills. That it actually helped. I can't even imagine that right now, but that's what I'm going to hope and pray for. I'm so glad you're getting through this. Thanks again for your input, forty, and also to Traci & Mitzi's comments. It sure helps to have other woman who truly understand. I'm just sorry any of us are having to deal with this at all. Take care and I wish you all a good day. I'll let you know how the dreaded first fill goes...... Katie :)       

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  • Leee
    Leee Member Posts: 155
    edited September 2007
    I went through the expander/fill process in 2004. It was extremely painful and felt like bricks. I couldn't lay down the entire process which meant sleeping sitting upright in a recliner because of the pain and discomfort.
    GOOD NEWS is that the exchange surgery for the implants is VERY easy and provides instant relief!! 
    You are going through the hardest part so hang in there - it does get better!!
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  • katesf
    katesf Member Posts: 139
    edited September 2007

    Thanks so much for your comments. Especially about relief after the exchange. That's what I'm holding on to. I was a C cup and only want a B. I'm hoping he'll only have do do a few injections. I currently have 200 cc in each. He wants to start with 100cc today, but many women on this site suggest taking it slow and start with smaller amounts. As far as the type of implants, he said there is some new type of gel that is out and he is planning on using. I'm going to ask for the name of it and do some research too. Ok, time to take my warm soothing shower before this injection experience begins. Thanks again, all of you wonderful, brave women! Take care. Katie    

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  • Urbie
    Urbie Member Posts: 154
    edited September 2007

    Hi - I am 3 1/2 weeks out from my bm w/tissue expanders place (unfilled) and I had my first fill today!  I was so nervous because I still have quite a bit of soreness and skin discomfort (taking lots of advil).  He was able to fill 100cc and I feel pretty good!  I still have the skin sensitivity that is unchanged, but no real pain from the fill.  I seem to have more skin sensitivity as the day progresses and end up putting on a soft tank top and wrapping an ace bandage (over the shirt) around my chest in the afternoon and sleeping with it that way during the night.  This keeps the fabric from moving over my skin and it is more comfortable.  Then I take it off in the morning to shower and it is less sensitive.  I know that it sounds so silly, but I am so glad to be able to look down and see small mounds instead of just flatness.  Small steps...

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  • katesf
    katesf Member Posts: 139
    edited September 2007

    Hi Urbie: I'm glad to hear you got through your 1st fill too. I had mine this morning as well, although I was filled with 200cc in each immed. following my bil.mast. 6 wks ago. I was very nervous today before the fill, but it all went better than I had expected. I didn't feel anything, just a tiny prick of the needle. I had wanted to start with 50cc but asked what he thought would be best and he suggested the 100cc so I went ahead. He wants to get to 550cc total so I'm thinking I will only need two more fills. I'm feeling about as tight as I was before my appointment, but they say it may get a bit more uncomfortable over the next 48 hrs. I'm taking TONS of advil too. My ps said it will be all worth it after the expanders are out and the permanant implants put in in a few months. I can hardly wait. I can't believe the cleavage I have with 300cc in each. It's progress. I wish you well and hope you feel better. This web site sure helps just knowing we're not alone and to have a place where we can go to vent with women who really understand. Take care, Katie      

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  • Urbie
    Urbie Member Posts: 154
    edited September 2007

    Katie - it is hard for me to explain to anyone how I feel when I correspond with women on this forum.  I feel blessed that I have found this outlet ~ somewhere where people understand how I feel and how scared I feel at times.  Stange how I have known people and loved ones diagnosed with BC in my past, but it doesn't really hit your brain until it is you.  And it also becomes hard for them to understand my feelings.  Here women do, and it is good.  I really love to laugh at some of the posts.  I will probably be starting Chemo soon and read the posts of when to shave your head.  Just where else can I get this type of information I ask you!  My two girls would freak out if Mommy let them cut her hair off ~ it is a thought though...   Good luck to you, WOW cleavage ~ I can't wait!  I was an A and going to a C!  God has given me a few smiles during all of this.  Take care,  Urbie

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  • katesf
    katesf Member Posts: 139
    edited September 2007

    Hey Urbie: I had forgotten to add in my previous response to you that after 6 wks. post op I too am still having so much soreness and "discomfort"(although it's still pain in my book!!!). Anyway, I think we just need to hang in there and be optimistic that a year from now this will all be behind us and we can actually enjoy the summer of 2008!! There wasn't much fun this past summer, that's for sure. I also wanted to add that I had dinner with a woman two weeks ago who had her bilat. mastec. last Oct. and then 5 months of chemo. and then this past June had her tissue expanders placed. She just had her last expander fill two weeks ago and is doing GREAT! Her hair looks wonderful too! I swear her attitude was amazing, and she was truly an inspiration to me. I didn't have to have chemo or radiation so I don't know personally how difficult that would be, but she did. She brought a photo album to show me that her kids had put together from her 10 month journey. She's having her expanders removed next month and having the permanent implants placed and she is so excited. Anyway, she gave me so much hope and I just wanted to share that with you. Every time I start feeling hopeless or just plain mentally and physically worn out by this, I think of her and realize there will be an end to this misery. Hang in there. You'll be in my thoughts and prayers like so many of these other amazing women. Take care. Katie :)  

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  • bmoran413
    bmoran413 Member Posts: 8
    edited September 2007

    Hi all,

    your posts make me feel better.  Had mastectomy the end of June and just had my 2nd fill today- postponed weeks due to infection.  I am finally sleeping back in my bed after spending months in a recliner.  I still have some pain but after the 1st fill it was a little better. I have terrible pain in my ribs and was surprised to read Traci's comment about a broken rib.  I don't think it's broken but it feels so bruised.  I asked the ps about it today and he said ask the pt to massage it.  I can't even imagine the pain.  Any others have pain in their rib area?  Also, what is the usual fill amount? I've had two at 60cc each. Not much change yet.

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  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited September 2007

    Hey girls!

    Mitzi, your comment about the turtle shell was right on! That is exactly what my feel like! Thank you for that so now I can give people around me an idea. (Those that aren't willing to feel for themselves...lol)

    Katie, You got me all excited about your friends hair. Describe "great".....if she had 5 months of chemo...that means she stopped in or around March...that's only 5-6ish months ago. Describe great.....Please. : )

    I am shocked that some of you guys are getting 100 cc's at a time. In one side??

    I get 50 in each side. I have another one tomorrow morning. I'll let you guys know how it goes.

    Has anybody's dr talked about filling them up with extra before they do the implants? I need to get one of those tape recorders so I can record what my dr's tell me so I don't forget.

    Have a great night ladies.

    : ) Traci

    ps....bmoran,  that what she said ....broken rib. My ribs just feel liked they are bruised just like you.

    Oh yea...I just remembered my doc told me that it's because the expanders are pressing against them and he also told me.....no lie.....that this process could permanetly reshape the shape of your ribs. He said it's harmless but that's what he said. Maybe you guys could ask your dr that question and let me know what they say?

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  • moogie
    moogie Member Posts: 499
    edited September 2007

    One of my expanders migrated almost to my back and I felt like a hot poker was under my arm until exchange surgery. This was a " Freak occurrence" and not visible until the exchange surgery day. The pressure on the nerve took time to heal, but it is so much better. Has Gabapentin been suggested? It helps nerve pain. I also had to extend my leave because I could not drive the 3 hours to work each day with sweat running down my face and hands shaking from the pain.

    Hope this resolves fine for you! My reconstruction looks very very good and the exchange gave me instant relief.

    Moogie

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  • moet
    moet Member Posts: 109
    edited September 2007

    Hi Katie

    Have just got back from my 3rd fill, I only had the expander placed just under 4 weeks ago. He put 100mls in today, I'm not sure if mls are the same as cc's?? In total now I have 410mls in and he wants to get up to 500.  He said the nerve pain should subside eventually! Whenever eventually is!!  I hope so, today after my fill the nerve pain doesn't seem to be too bad (at the moment) but my shoulder and top of my back are very painful,the expander now fees like a boulder, it is nice to see the cleavage forming though. Glad you fill went ok, let me know how you are going, thanks to everyone for your support and advise. Its such a comfort knowing we can come here.

    Love to all Moet xx 

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  • abbadoodles
    abbadoodles Member Posts: 2,618
    edited September 2007

    Ladies, hi.  I just had my expander replaced with the implant two weeks ago, today. 

    When the expander was placed, the ps put in 50 cc to keep it from collapsing.  Then, it was 50 cc (same as ml) each time except for twice when it was 75 cc.  I only had a little discomfort after one of the 75 cc fills, and that was very minor, so I suggest that if you are receiving more than 50 cc at a time and you are very sore, that you discuss with your ps the idea of getting lesser fills.  So, it will take a bit longer.  There is always a trade-off.  Besides, some of you will have to wait several months after the final fill to have the exchange anyway.  Chemo and all that, maybe rads.

    Most ps's overfill the expander so that there is a little natural "give" or "droop" to the implant when it is placed. 

    Good luck all. 

    Tina

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  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited September 2007

    I had bilat June 1 with expanders. Aug 16 my ps filled me to 600cc and said that he would not expand me any more but that is a good b or small c cup. I am pleased with the way the expanders look, I cannot wait until I go back Sept 27 and see what he says about my exchange. My husband is pleased with the results. he is a long haul trucker and enjoyed coming home every week to see how I had changed.

    sheila

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  • katesf
    katesf Member Posts: 139
    edited September 2007

    Hey Ladies: It certainly helped to wake up and see so many responses about these tissue expanders issues. I thought I was a rare case but apparently not. Moet, It's been almost 24 hrs since my first fill and I'm doing ok. A lot tighter, still sore all around the breast area, but one severe area of nerve pain I had (the upper top of my R.breast near the arm pit) seems a little better from the fill because it was plumped up. I was very weepy in the PS office before the injection because I didn't know what to expect, like the biopsy's and lumpectomy etc.. but it wasn't bad at all. Anyway, it's over until the end of next week. Mitzi, I wanted to let you know what I meant by Cindy's hair looking great. When I met her last Oct. to schedule her bilat. mastec. surgery, she had dark, thick shoulder length hair. Probably started chemo. in December. She came to my office this past May after finishing chemo. in April, and her hair was darling! Very short, maybe a 1/4 inch but so flattering. She grinned from ear to ear when I commented on how great she looked....Very cute. She said women in stores would stop her and comment on what a great look she had! Anyway, I met her two weeks ago and that was about 3 months after my last visit, and she had the cutest cut. A few inches long and very funky, stylish and flattering. I bet she'll keep it short because this length looks that great on her. As I had mentioned, her attitude has been an inspiration to me, because as you all know, this is so emotionally and physically draining on us. I see that she went through so much and got through it and that helps me on my bad days. Just wanted you to know. Hang in there and hope you have a good day, everyone! Take care. Katie :)   

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  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited September 2007

    Hi girls,

    Well, this morning he filled me with another 50 cc's in each side and I feel like I have two cender (sp?) blocks under my skin. Ouch...................

    He says I need 5 more. 2 to get to the size I wanna be (small C) and three extra for what Tina said.

    I wish I had a DH to massage my neck and shoulders.....

    I'm grumpy cause it hurts. I'll talk to y'all later. Hope you're all o.k.

    : ) Traci

    ps He told me that broken ribs were not that un-common. Lovely. My freaking cat will probably break one of my ribs using my chest as a spring board which she occasionally does in the middle of the night!!!

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  • katesf
    katesf Member Posts: 139
    edited September 2007

    Hey Traci: I'm sorry you're hurting. I know it's miserable. Hang in there, get into you're most comfortable position (or the least uncomfortable one) and if you have something for the pain, take it. Maybe a nice, warm, soothing shower before bed would help a little too. Soft pillows under your arms in bed...whatever helps. You're in lot's of people's thoughts here. Let us know how you're doing tomorrow. Try to get some much needed rest. Take care, Katie.  

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  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited September 2007

    Hey girls,

    Two hydrocodone later and I'm feeling o.k. Cool

    Question for you ladies...katesf commented about her cleavage. Mine seem far apart. I can literally put three fingers in between my expanders. Are y'all like this????????

    Traci

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  • dpbrown523
    dpbrown523 Member Posts: 40
    edited September 2007

    I just want to say that I know what you are going through.  I had the expanders for almost 9 months while I was going through chemo.  I did have quite a bit of pain at times for a couple of days after fill.  I had silicone implants in Feb and they felt so nice and soft!  I was able to sleep much more comfortably!  If anyone has any more specific questions email me please.  By the way I'm still taking hydrocodone for pain.  Not so much in the breast area but back and shoulders and occasionally in the breast.  I do not wear a bra.  I went and bought Victoria's Secret 34D Ipex bras.  They really do look good!  However a bra rubs on my mastectomy scars and drain tube scars and is too uncomfortable.  I just go without.  No nipples so nobody can tell lol.  I cancelled the nipple reconstruction surgery twice.  Just don't feel like getting cut on again.  Maybe some time in the future.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2007

    Hi All



    Well it's offical you have all scared the Hell out of me. I am having a bilateral & reconstruction on Wed Sept 26th. I was just worried about the possiblity I might have to have rads after my chemo. Now I am really scared. I just completed my pre-surgery chemo and have had a terrible time with it, the thought of more or that with the fills and all the pain you gurls have gone thru with my nausia and vomiting....oh NO.

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  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited September 2007

    Jean...........................

    What we are talking about it NOTHING compared to chemo!! Or, at least, that is my thought. I would go through fills 1000 times before I would go through chemo again.

    This is completely different. This is like...........the pain you feel 2 days after playing tennis for 24 hours straight after not having played tennis in 30 years. It's muscle pain.

    Sorry to make you feel bad. Hopefully, this thought will make you feel better.

    Traci

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  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited September 2007

    ps.......I forgot to mention.....If given the choice, I would have 20 (more) double mastectomy's  before I had chemo again.

    And, I'm not just saying that.  I mean it. The bi-mast sucked really bad for about a week, after that, it was totally tolerable. At least for me. The chemo.......that sucked in a whole different way. At least with stiffness in your chest, you can still hang out with family or friends. With chemo, my mind was not in control.

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  • Sociologist
    Sociologist Member Posts: 237
    edited September 2007

    Good Morning Everyone,

    I'm happy to know I'm not the only one having issues with the expanders. I'm at 520cc's and have to go up to 800. I'm allergic to every pain med known to man (codeine, darvon, vicodan, percodan, and oxycontin) and ibuprofen isn't doing much for pain. The PS gave me flexeril for the muscle spasms but I can't take it and teach. My regular MD examined me Monday and said the reason I was having trouble breathing (L side where mast occurred) was that the expander was on my rupper ribs. The other issue is that I've had a rash on the mast side since surgery and according to the MD, it looks like it's a reaction to the expander.

    I almost passed out yesterday from the pain. One of my male students had to escort me back to my office (I teach college-thank goodness for that since I feel a bit more secure that someone could actually pick me up if I fell!). I had no idea that the reconstruction would be this uncomfortable.

    I too am thinking about cutting back on my work schedule until all of this is over. The problem is that I'm the only instructor for my subject area (sociology-the poor cousin to psychology) and have no one to pick up the slack for me. I love teaching and I feel so bad for my students because they pay tuition so they can take my classes and I've already been off 4 days since August 13. I'm trying to work through the pain but I'm to the point where I just can't stand it! I'm on the verge of tears all the time and just wish December was here so I could have the swap to the silicone implant.

    I'm so greatful this forum exists. It truly makes me feel better to know I'm not the only perso on the planet having these issues. I thought for sure I was loosing my mind and all of this was in my head. Thanks for proving to me that I'm not crazy! Thanks for letting me vent. Yall have a good day.

    Margaret

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  • dpbrown523
    dpbrown523 Member Posts: 40
    edited September 2007

    I'm thankful for this forum too!  I read these posts and there is someone else who feels the way I do! 

     You all are having a lot of saline injected.  That seems like a lot!  My PS put in 75cc in each when I had my mastectomies with expanders placed. Then once a week I had 30 cc injected into each side up to a total of 350 cc each.  My silicone implants are 400 cc each.  I am a 34D in the VS Ipexx line and it is very tight!  I was an A cup before I had my bilat mast.

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  • abbadoodles
    abbadoodles Member Posts: 2,618
    edited September 2007

    Jean, don't be scared off.  Responses to all these procedures is so variable.  You may not have ANY pain of discomfort, or you may have lots.  It's impossible to tell, but if you want recon, you have to just plow ahead with it and see how you do.  Even women who have had discomfort or pain seem to have kept on with it and most are reasonably happy with the final results. 

    OTOH, you may decide that you don't want any recon and that's fine, too.  Many women opt for wearing prostheses.

    Good luck with your decision making.

    Tina

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