continued Tissue expander pain!!

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  • Estepp
    Estepp Member Posts: 6,416
    edited March 2009

    Oopppsss I just saw this...

    Carole, I was fully expanded prior to rads as Tracey said. My PS says 6-12 months after rads till exchange... and I am going to PUSH him into this Oct. ..:)... that will be 6 months.. that is all I am willing to wait...:)

    If you want to PM my about any of it.. go right ahead!

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  • choward183
    choward183 Member Posts: 62
    edited March 2009

    YvonneB... Thanks for the best wishes.  How are you doing?

    Blessings to all

     Carolyn

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  • Montana_Mom
    Montana_Mom Member Posts: 22
    edited March 2009

    Stacibeth - if your mom cannot wear a sports bra, I suggest she try an ace wrap to maintain pressure.  One of my drain tubes was still producing up to 50 cc of fluid a day, on day 40+!  It was removed because there was a greater chance I would develop an infection if left in.  But, that fluid has to go somewhere so it just built up wherever there was some space, and boy did I feel the pressure, which is probably some of the pain your mother is experiencing!  I was able to use cold gel packs (over the ace wrap) and took Motrin and lots of warm baths.  The PS  aspirated some fluid after the first fill.  When he did the next fill, the fluid pushed the needle right out of the port and water shot out!  After two fills, I did not have any problems with fluid build up. I  pray your mom's pain will resolve soon, and please tell her hello from the TE ladies.

    P.S. My exchange was on March 3, and my rib, shoulder and arm pains are now gone!  The exchange surgery recovery is much, much quicker and easier than bilateral mastectomy surgery!  I went back to work on Saturday and to church and a potluck dinner on Sunday. 

    lexislove - welcome to this thread.  I had 840 cc in each TE and received 600 cc silicone implants. I am hoping I will be a full B or small C, after I graduate from the ace wrap and sports bra - boobs are squished down right now so hard to tell.  

    Sharon 

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  • jahnac
    jahnac Member Posts: 3
    edited March 2009

    Hi all -

     I've been reading the posts since my double mastectomy on January 20, 2009 and have been encouraged and scared spitless by all you have been going through.  I was intially diagnosed with LCIS the day before Thanksgiving last year.  The pathology from the double mastectomy showed that I also had DCIS in one breast.  Anyway, my question is for those who didn't have to have chemo, radiation or nodes removed what type of incision did you PS make on you?  Mine is called a "purse string."  They removed my nipple and aerola and then stitched around the opening and pulled the stitches up.  I'm not healing so well from this.  Looks very red and raw and just not getting pink new skin like I think it should look.  Just last week the PS put me back on antibiotics for the 3rd time, 4 times a day plus a topical antibiotic, twice a day.  He has also had to remove about 160cc's from each breast to help the healing. Plus PS has added one extra stitch to the left side and two stitches just yesterday to the right side.  I've also had a terrible nerve/tendon pain in my right arm pit where the expander seems to be sitting on or rubbing across and I can hardly move my arm without grimacing in pain.  Kind of feels like hitting your funny bone constantly.  After a while it just wears on me and I get all weepy!!!!  Before that pain I had a burning pain under my right explander that just killed me!!!!  But I would rub it and then found if I put a pain relieving gel on the spot it went away.

    I did try to go back to work at the 6 week mark but only lasted 2 1/2 days and then cried all day and asked for an extension on the leave.  I'm about out of sick leave and vacation but really don't want to return to work until the permanent implants are installed because I can't do my job at the 100% that it needs.  The pain is just too much to concentrate!  I feel like a wuss but I just can't get up early in the morning and get ready - putting on clothes other than sweats is a challenge with my arm - plus drive to work - that kills my arm - and then concentrate on work.  Just not going to happen!!!!

    Any words of encouragement or tales of what type of incision you had would be greatly appreciated.  Looking very forward to the permanent implant surgery - well not the surgery but the after!!!!!

    Jahna

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  • CAZ
    CAZ Member Posts: 678
    edited March 2009

    Oh Jahna,

    I'm so sorry you're still not feeling well.  My PBM incisions were horizontal across the middle of each breast.  They used the same approach to exchange for implants and to, more recently, surgically drain a seroma.  Have you considered a second opinion?  My TEs rubbed on my ribs until about the third fill.  I feel fortunate that ibuprofen handled my pain.  Some ladies have benefited from Neurontin for nerve pain.  Let your PS know all your concerns.  If they blow you off, get a second opinion.

    Best of luck,

    Carol(AZ)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    jahnac - I had my bilateral the day after you - also had lobular (but invasive) and a small dcis!  Just 4 sentinel nodes, no chemo, started Tamoxifen last week. My incisions are straight across each side, so I can't help you with the incision question.  I will say that I completely understand your pain.  I still haven't made it through a day without at least a little ibuprofen thanks to my TE's. I also got a lot of relief for the first few weeks from a muscle relaxant. Is your arm that "feels like hitting your funny bone" on the side where you had senitnel node bx?  That may expain part of the pain; I'm numb on that side from my armpit to the elbow on the tricep side.  Dressing for me is still not fun either; blouses are definitely easier than t-shirts.  It sounds as if you still have a lot of healing to do, so please try to hang in there. Don't be afraid to call your PS either (or get a 2nd opinion). Often it's easier to deal with things once you understand what's happening.

    Remember - we're all in this together!  (sorry, just realized I sound like High School Musical!)

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  • jahnac
    jahnac Member Posts: 3
    edited March 2009

    Thank you Val and Caz.  I'm taking two Tylenol every 4-6 hours for the discomfort so I'm glad I'm not on pain meds anymore.  I don't know how to go about getting a second opinion.  I have an HMO and the PS I have is the only one in my group.  I am still seeing the general surgeon who removed everything but she won't really say anything against the PS because he is supposedly the best in the area.  I do call and let the PS know what's going on.  Right now he's more concerned with the incisions and infection instead of the pain/discomfort.

    Val - I didn't have any node biopsy so the pain is mainly from the expander rubbing on a nerve/tendon.  It's better since the PS removed some of the fill but I know it will start up again as soon as I get another fill.

    If I remember right the PS filled my expanders with 140 cc's upon insertion.  He tried to put 150 cc's in two weeks ago but had to go down to 90cc's when he couldn't get 150 cc's in my right expander due to the skin pulling too much.  He then took out 160cc's from the left expander because the incision wasn't healing.  Yesterday he removed probably about 100 cc's from the right expander because the incision isn't healing well. 

    I see my general surgeon today and I'm going to ask her opinion.  She might tell me something once she see's the mess my incisions are in.  At least I'm hoping.

    Thanks again for the encouragement!!!

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited March 2009

    Jahnac - I took a full 3 months off for my medical leave. I was changing jobs, so that's part of the reason. But even if I wasn't I would have taken 2 months. It takes a while to get over this surgery and really get back to 100% at a job. It sounds like your PS put a lot in at one time. My TEs started w/ 150 cc after surgery and the fills were never more than 50-60 cc at a time, so that could explain some of your discomfort. You also are dealing w/ a long term infection which is certainly draining and exhausting. My suggestion would be to try to take it easier on yourself and not worry about work for a while, if you can. Your body needs time to heal and you need to give it that time. I am so sorry that this is drawn out for you. Know that we care. - Jean

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  • sam1991
    sam1991 Member Posts: 331
    edited March 2009

    Oh Jahna....You poor girl. I'm so sorry you are feeling bad. I agree with Mykidsmom. I took 14 weeks off from work and I just went back last week. I only worked 20 hours and that was enough. I've been doing my job for 13 years but felt like an alien new hire the first couple of days. I've had to dip into my savings after my short term disability and sick time ran out. 

    I didn't have any treatments. My incisions are straight across the middle of each boob. I had my preop appt today and they will go back in through the same incision for my implants. I didn't have any infections but my expanders are overfilled by 110cc and I've had tons of nerve pain. My PCP did give me Neurontin and it was a life saver. I take it 3 times a day. Ibuprofen alternating with extra strength tylenol gets me through my work day. Then....bring on the Valium when I get home.....really helps settle them...and me down.

    Good luck and use this...and other threads as much as you can.  Jean is right....we care.

    Kathie 

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  • dani42
    dani42 Member Posts: 423
    edited March 2009

    sam1991

    I am glad you mentioned feeling like an alein new hire the first couple of days back at work. I returned Monday, 2 weeks after surgery.  I am having such brain fog that I have to ask questions on things that I use to know.  I only worked 4 hours yesterday and today and when I got home slept for hours and had a lot of pain on my right side.  I think it may be a combination of muscle and nerve pain.  I think I will stay home tomorrow and then try half days on Thursday and Friday. 

    I talked to the nurse at the PS's office today and asked if I could take anything other then tylenol extra strength and she said not unless I go back on Narcotics.  I assumed she was talking about darvocet but maybe I should ask about Neurontin.  How do you know it is nerve pain?  I am getting twinges of pain under my incision, around the nipple area.  I still have my nipple but half of my aroela is scarred, and without color.  I also get stabbing pains in my right shoulder blade right through to my chest.  It can be so discouraging when you expect to feel better than you do.

    Kathie- very exciting that you had your preop!!!    

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  • sam1991
    sam1991 Member Posts: 331
    edited March 2009

    Dani42....I sent you a PM.

    Kathie 

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  • CAZ
    CAZ Member Posts: 678
    edited March 2009

    Hey Dani,

    I'm not sure what Kathie told you, but as a nurse she has the inside scoop.  As I understand it,  Neurontin works differently than NSAIDS or narcotics.  I believe it may take a little time for it to kick in, however.  I hope you find some relief.

    Carol(AZ)

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  • sam1991
    sam1991 Member Posts: 331
    edited March 2009

    Carol.....You're so cute!!!! You must be a mom cuz nothing gets by you....LOL. You're right about the Neurontin!!! I think I'll turn you into a nurse yet!! 

    Dani and I actually got a little laugh. We agreed we didn't want to piss off the cute guy who's remodeling our boobs...hee hee

    Holding my breath...and my boobs till the 18th....yee haw...Tissue Expander pain be gone!!

    xxoo Kathie 

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  • fairy49
    fairy49 Member Posts: 1,245
    edited March 2009
    Kathie!! go to bed LOL!!!!!Smile love ya!! p.s. my foobs are looking pretty good right now yipeeee!!
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  • fairy49
    fairy49 Member Posts: 1,245
    edited March 2009

    oh! sorry to bother all my lovely ladies! but old picture or new picture?????? ok, I am bored!! LOL!

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  • sam1991
    sam1991 Member Posts: 331
    edited March 2009

    You're bored and I can't sleep.....what a pair!!!! No wonder we ended up together in the dressing room with our little shirts up around our necks!!!!! It was meant to be.....LMAO

    New pic is sexy woman!!!!

    Love ya either way sister.....

    Me 

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited March 2009

    Lorraine - I am w/ Kathie - you are beautiful in both pictures!

    That's funny, I had a hard time sleeping last night too. I almost got up and got on line, but I knew it would drive my dh crazy. The key typing would be noticable. It must be that we get to a certain stage, feeling pretty good, and then get a little down. For me it is more the worry over lack of work than anything else. I lost my job in December the day before my surgery and I am trying to get things started back up again, but this time w/ only one business partner. Figures that I am doing this in the worst economy we have had in many years!

    This is a big day for our ladies and surgery. I am picturing each of them healing well and feeling better. Thoughts and prayers with all today. Take care. - Jean

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  • sam1991
    sam1991 Member Posts: 331
    edited March 2009

    Oh Jean....you could have joined our sleeplessly bored party!!!! Funny when I looked on line and saw Lorraine telling me to go to sleep. We had just been on the phone earlier too. I laughed because it felt like I got busted by my mother as a teenager texting under the covers. LOL

    I'm sorry you lost your job. It's hard to have your own business I think...rewarding but you're always "on" so to speak. I'm the director of my program but always grateful I have my boss to fall back on. I hope things pick up for you and your new partner works out.

    It is a big surgery day. I'm with you in the healing well and feeling better image in my head. I'm going to carry it to work with me.

    xxoo Kathie 

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  • fairy49
    fairy49 Member Posts: 1,245
    edited March 2009

    big hugs and prayers to all the surgery ladies today!! Jean, thanks so much for the compliment! I don't feel very beautiful this morning! LOL!! I am so sorry you lost your job, that sucks, I am not much better off either right now, not too many people needing a wedding planner!! they are still having weddings, but consider us to be a luxury.  But, to put things in perspective, I have told myself, I am blessed in sooooooo many other ways, life is too short to worry, we have to heal, both physically and mentally and THAT is what matters!! So lets all hang in there together!

    Love

    Lorraine ox

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  • dani42
    dani42 Member Posts: 423
    edited March 2009

    CAZ and SAM1991

    No go on the neurontin.  My ps said darvocet is the strongest script he will write.  He agrees that it is nerve pain but recommends ibuprophen and a heating pad.  The heating pad can only be on low and for only 10 minutes at a time.  I can see it now, me sitting at my desk with a heating pad on my foob! 

    I called my pcp but as usual, she hasn't returned my call. 

    Lorraine, you look fabulous in both pictures. 

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  • lulubean
    lulubean Member Posts: 2
    edited March 2009

    Has anyone had a tissue expander corner poke the skin from inside so much that it sticks out? It has not broken through the skin, but the "point" is irritated. I can push it in but it bounces back out. Anyone?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    lulubean- My expander is still unfilled, so the folded edges really poke on me, too.  Just yesterday I felt a pokey edge and tried to push it, but like yours, it went right back where it started.  I had some redness all along the bottom of each foob, but that is almost gone now.  If the skin is really red or very warm, you should probably call your PS.  Good luck!

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  • 1stick
    1stick Member Posts: 17
    edited March 2009

    Hi lulubean, I have had exactly the same feeling as you.  My PS said that its lack of fat and a deficient muscle on that particular side (the other side has been fine).  Its also worse at the moment as the TE isnt filled.  I was told to try not to let it poke or irritate the skin as it can cause a real irritation or in fact push through if left alone.  He told me to gently push it away and then protect it and try to hold it with lots of cotton wool padding and a compression or sports bra.  Definitely feels better when I get it into the right position and then is agony again when I take everything off. Apparently will be much better when filled up a bit.  Fewer corners and stays in place a bit better.

    Take care

    Cathy

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  • lulubean
    lulubean Member Posts: 2
    edited March 2009

    Cathy, thank you for your comments. Now that you said it, I recall my PS saying it's a thin flap. This side has only had 30cc of fill since I had an infection (which is not gone, thank God), so maybe it will improve once we start filling again. I will do what you suggest with the padding and keeping it protected. I really don't want it to push through! My other side is fine too. Can't wait for all this to be over!

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited March 2009

    Dani42 - I am sorry your PS won't prescribe the neurotonin, mine would not prescribe it either. I can tell you that it all gets easier over time. I am a big believer in hot baths, warm wash cloths and a glass of wine. At least after you have healed to a certain extent. Best wishes. - Jean

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  • anajim
    anajim Member Posts: 11
    edited March 2009

    Lexis, like you I have a terrible time with this TE-and it also kills me for several days even with pain meds...I totally understand where you're coming from....I had a fill yesterday-I am now at 300 cc-I too just want a B-cup-I'm not even concedering a C because of the pain....I was told I was almost there-for sure one more fill (for B) or maybe 2-so....with that in mind...you are almost there for the B....

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  • neckel1
    neckel1 Member Posts: 2
    edited March 2009

    Hi all.

     Just thought I'd throw my two cents' worth in here.  I had a right mastectomy in Aug of 05 - followed by the normal 28 or so radiation treatments.  Then I waited three years before I was ready to consider reconstruction.  Finally had the expander put in last August, followed by just four fills - each of which was progressively very painful.  I'm still waiting for my radiated skin to soften - and am hopefully close - but did want to issue a warning.  On my bone scan in Dec, it was revealed that I was recovering from several cracked ribs -- and we've concluded that was a result of the fills.  No wonder it hurt! :-)  Anyway -- just something to be aware of -- if you've gone through lots of treatment, and your bones are weaker than you had thought - you could be in for a surprise.  It still hurts - but not as badly. My side has been so sensitive I've gone without a bra now for 6 months!  Yep, I'm uneven, - saggy on one side and small on the other, but I usually wear layers and it doesn't show too badly.

     Wishing all well...  it's definitely a journey!  But one that does, in amazing ways, have silver linings if you look hard enough.

     blessings,

    nancy in cincinnati 

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited March 2009

    Soes anyone have pain in their middle back from fills ???  I seem to have adapted a new posture (protective stance) and my back has been in pain since my core biopsy.  When I mentioned it to my onc. she started poking around my back and stated no wonder I was in pain my back is a big knot (gee thanks) and gave me skeloactin (sorry about spelling) for the muscle spasms.  Well I took the muscle relaxer and it did nothing my back was in pain 10 min after I woke up with muscle spasms.  When I went back I mentioned it wasn't working and she questioned me if I had any pain killers left and when I told her I have a ton she never said anymore about the issue.  She went on about the flu (which was why I had the appt.).

     I mentioned it to my PS and her response was to go get a massage.  I have had to have physical therapy when I was pregnant for pain in the same area but I feel like everyone is blowing me off.  I am literally counting down the days until I hopefully can have my exchange hoping that my back problems will be better then. 

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  • Missymac
    Missymac Member Posts: 8
    edited March 2009

    I am new to this site and recovering from a bilateral mast with reconstructin started at time of surgery with 200 cc.  I have had 3 fills at 60cc each.  However, my right breast from day one has been "achy" and the expander is much harder than the left.  My fill last week was done only on the left because of this issue.  Has anyone else experienced one expander being harder and more painful than the other?  After my last fill on the right breast I had excruciating pain like nerve or breastbone pain.

    I love this site and am beginning to feel that all my issues are "normal" for this process.  Just concerned about the hardness of one of the expanders.

    Thanks to all of you for your comments and info. 

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  • sam1991
    sam1991 Member Posts: 331
    edited March 2009

    Missymac...the expanders are always hard. They never soften up...your skin just sort of stretches around them. It's ok....there is an end to to the expander madness!!!

    Kathie 

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