continued Tissue expander pain!!

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  • MooreTennis
    MooreTennis Member Posts: 177
    edited August 2009

    Sunibe - I still have my TE's and will have my exchange on September 15th. Like Allison, I am leaning towards no nipple reconstruction - thinking about fun tattoos.

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  • deborah48
    deborah48 Member Posts: 23
    edited August 2009

    Sunibe,

    Do yourself a favor and take a deep breath. There are different kinds of procedures and each one has it benefits. When I was diagnosed I had no idea that there ia a nipple sparing operation. I had no idea that a lot of this depends on the PS. I was kinda rushed into things but I wish that I was more informed....You can call the Cancer Institution of America and if not go there, they may be able to give you some advice. Also look at your PS web site....What is his specialty?

    Alitman, thanks for the info....I had a chance to go to timtam's forum today and realized that even though we are all different, we are all in the same boat.

    God Bless All....Tongue out Deborah

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  • Alitman
    Alitman Member Posts: 141
    edited August 2009

    While I was able to have skin sparing mastectomy, I wasn't able to have the nipple sparing surgery - it wasn't until after the surgery I knew for sure.  I was advised the PS would try to save them, but in the end it was better for me if he removed them.  The funny thing about all this is that I really liked the special sensitivity of my nips but I honestly don't miss them.  I don't feel less feminine or anything.  This will be way more information than anyone wants but now I have an overwhelming desire to run around without a shirt on....LOL  I probably would but my 19 yr old son would run screaming into the night if I ever did it.....

    Allison

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  • sam1991
    sam1991 Member Posts: 331
    edited August 2009

    Allison

    Hmmmmm.....maybe that's why my 18 yr old son ran off to college....LOL. I know the hey does anyone wanna see em feeling.....good for you.

    Kathie 

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  • swest
    swest Member Posts: 680
    edited August 2009

    Denise -  How are you doing?  I'll be thinking of you on the 15th!  Yea!!!!

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  • MooreTennis
    MooreTennis Member Posts: 177
    edited August 2009

    Sonia - I am doing OK, kind of in a weird funk - nervous and excited to get these turtle shells out. Work has been crazy so I have just been kind of lurking lately instead of posting.

    Good luck tomorrow at the unveiling - I hope the new girls are perfect and that you continue to be happy with the results.

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  • swest
    swest Member Posts: 680
    edited August 2009

    I was in the same funk right before my surgery.  I was excited to get the turtle shells out but nervous that I would not like the new girls.  I wanted it to be right the first time.  I totally understand your anxiety.  Hang in there!  Treat yourself good in the mean time!

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  • makingway
    makingway Member Posts: 799
    edited August 2009

    Ok Ladies I am finally posting my pics on the other website forum. Let me say I am not happy with my reconstruction. I miss my little boobie :(

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  • FACECRAFTER
    FACECRAFTER Member Posts: 1,092
    edited August 2009

    swest (Sonia)  Hi - sorry I have not been here for a few days and It takes a while to catch up!!  Thanks for thinking of me... I am encouraged  by the good results everyone else is getting...

    You need to wait at least 3 months (preferably 6) before you have your nipple tatts.  And did you read my 'heads up'  on the Exchange City forum about the nipples? 

    sunibe, and others:  make your decisions when the time comes...but here are a few things to consider-  If you are getting nipple tattooing and/or areola tattooing, get it done by a good permanent makeup artist.  I will help you find one near you.  If you want a realistic nipple areola complex done.  They can be made very real, with or without a nipple.  The nipple protrusion can look real even though it is totally flat.

    If you want a decorative tattoo, this must be done by a good tattoo artist.  Permanent makeup people do not do body tattoos.  If you are going to have a body tattoo, a decorative one,  wait at least 6 months to a year before going.  The area is still healing underneath, and tattoo pigment may be irritating to it.  It is not the same as permanent makeup pigment, so I would recommend the longer wait.  Good luck in whatever you do,  JUDY

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  • Faythnme
    Faythnme Member Posts: 167
    edited August 2009

    Well if it isn't one thing or another.  I have to go back into the doctors again tomorrow (was just there Friday). I took a shower on Thursday a stitch popped went into the dr on Friday and they packed it so it would start to coagulate.  Well I called them on Saturday to let them know that I believe the expander is showing through the opening in the stitch. (1 in diameter circle).  I told them it looked like plastic to me.  The doctor didn't see how that could be since she put so  much muscle in the front.  Well my ex sister in law (went to school for nursing) I showed her and she said it was definitely plastic.  Muscle is not glistening like diamonds to me.  So I'm thinking how much more can I go through.  I cry on and off.  I'm trying to be positive and look to the end of this.  I just dont want to get sick in any other fashion.  I'd rather be flat for awhile then be sick.  I am so grateful though that my sis in law has stepped up for me and it's been great.  I don't know why I didn't call on her before.  Has anyone experienced another surgery due to the expander being visible?  If so how did it go.

    Thanks to everyone listening to my whining!!

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  • Angel10
    Angel10 Member Posts: 682
    edited August 2009

    Faythnme....no I never had that experience, but so sorry you are having this concern!  I am so glad you will get back in to the PS tomorrow though...please tell us how it goes and good luck....hopefully it won't take too much to correct....

    God Bless

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  • swest
    swest Member Posts: 680
    edited August 2009

    Faythnme - Oh girl!  I am so sorry!  I have read some where on these boards that someone else had this happen to them.  I think they just went back in and placed a new TE.  I am sending you big hugs!  Let us know how you are doing!!

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  • my560sel
    my560sel Member Posts: 1,065
    edited August 2009

    Hi everyone,

    I'm new to this thread an up until my last fill I wasn't having any pain. All that has changed now....lol

    Wow, my last fill was a killer ! I'm up to 370 cc's and getting excruciating pain on my sides and back. I've been lucky so far with having very little to no pain but I think I'm paying for it now! Mornings are the worst. Especially if I happened to have turned a bit on my left side during the night. I wake up with a terrible burning sensation on the side of my breast. Is that normal?? I've read about women taking muscle relaxers  and I think I'm going to speak to my PS about them. I'm under the impression that he wants to fill to at least 500cc's but I'm not sure how much more my skin can stretch! 

    This whole breast cancer site has been a life saver for me. I don't know what I would have done without all you great ladies on here. I've been hanging out in the exchange thread but I think I'm going to need your support for a while if you don't mind....lol

    Thanks for your help,

    Terri

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  • swest
    swest Member Posts: 680
    edited August 2009

    Terri - I had the same pains.  You are perfectly normal.  My las fill was the worst.  It took me a good 5 days to bounce back.  See if you PS will give you muscle relaxers.  I took long hot showers on my back.  I don't think you can take 500 cc's more.  You look like a tiny lady.

    I hope you can find some relief!

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  • my560sel
    my560sel Member Posts: 1,065
    edited August 2009

    Swest: I'm going to try the hot showers and baths until I can get a hold of my PS. From what I understand, I need about 2 or 3 more fills (if I go slowly, which I'm going to) to get me to 500 or 550. Thanks for the compliment, but I'm not that small...lol  I'm 5'6 and 145 lbs ! I've gained about 7 lbs since being diagnosed and now with the Tamox, who knows how much I'm going to gain! I've got my pics on the picture forum and honestly, I don't know how big I have to go before he stops the fills and I can get my exchange. I'm feeling pretty "bloated" as is!

    Terri

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  • swest
    swest Member Posts: 680
    edited August 2009

    Terri - You'll know when you've had enough.  Don't let him pressure you to keep going.  Remember he can put in implants 100-150cc greater than you've been expanded.  Mine just did!  Take it easy!  I hope you get him on the phone soon!

    Sonia

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  • Faythnme
    Faythnme Member Posts: 167
    edited August 2009

    UPDATE: Well I go into the hospital tomorrow and have both expanders removed.  I will be delaying my reconstruction for awhile so that I can heal both physically and emotional.  I may start back up in November or early next year. So it will be prothesis for awhile if at all.  At this point I just don't care what anyone thinks.  So I will be in touch and I wish the best for everyone.

    Thanks for all of the kind words and thoughts.

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  • swest
    swest Member Posts: 680
    edited August 2009

    Hugs and prayers go out to you Faythnme!  I know this has been really difficult for you!  I hope you heal mentally and physically quickly!

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  • my560sel
    my560sel Member Posts: 1,065
    edited August 2009

    Sonia: I'll mention it to him when I see him next...I'm glad your exchange went well. I read about it on the Exchange thread.

    Faythnme: I wish you all the best - Take the time you need to heal...this process can be done at any time. You need to think about what's best for you. Take care and all the best to you.....

    Terri

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  • Angel10
    Angel10 Member Posts: 682
    edited September 2009

    Faythnme...

    You have friends and supporters here.  Whatever you need to do to get well is the FIRST priority, just know that we are here for you and want to know how you are doing.  We care...Sending you prayers and healing thoughts. 

    God Bless,

    Angel

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  • Angel10
    Angel10 Member Posts: 682
    edited September 2009

    Terri,

    this whole process is a roller coaster ride.  It is not easy, with twists and turns along the way.  Pay attention to what your body is telling you. Slow down your fills if you need to, either volume wise or time in between fills.  Muscle relaxers help....ibuprofen helps, pain meds help....don't suffer any more than you have to. I have been happy for those who have not suffered during this process, but that was not my case.  Post exchange has not been a picnic either....but I am getting through it.  But I always spoke up when I felt the need, either by telling my PS to decrease the volume or skipping another week or so between the fills. It became a dance of sorts....how long did it take for me rest before I  felt able to take the next round of pain! :) . Don't mean to be discouraging....some weeks flew by, others dragged. Just listen to your body and don't be afraid to take control of the process.  My goal was to be cancer free as soon as I could...the rest can take time...

    God bless!

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  • spinnaker
    spinnaker Member Posts: 53
    edited September 2009

    Angel, those are definitely words of wisdom!  I finished with my fills last week and now am in the waiting process.  I hope to schedule exchange surgery in November.  Instead of going for a fill every week, I had to do 2-3 weeks between because it took so long to get past the pain.  The worst of it hit me 3-4 days after each fill - it felt like I was stabbed in the ribs with a knife!  This process is long and slow at times, and sometimes emotionally draining, but you're right that the goal is to be cancer free.  Thanks for that great reminder.

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  • Angel10
    Angel10 Member Posts: 682
    edited September 2009

    Spinnaker...thanks for the support...and so glad you are done with the fills!  What a trip this whole thing is....who knew before all of this what it was like or how much we could endure?  but...WE DO! We are strong!  And we will take control as necessary!  We will prevail!  Faythnme will rest and do what she needs to do to feel whole...but the goal should always be to get at the cancer first.  The rest will come...

    God Bless!

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  • Celine
    Celine Member Posts: 82
    edited September 2009

    Faythnme, you have made the right decision. I know it's very difficult because but you have to do what its necessary. Your courage to face the reality is an accomplishment in itself. To wait and get healed is the right way is the best think you can do for your own body. I will always think of you and hope you all the best. Take care.

    Terri, I didn't have any issues on my 3rd fill until I reached 490cc. The pain shoots to my back and on to the left arm. I also could feel a bubble on my left expander. I have to wait for four weeks before another fill. I keep taking muscle relaxer and vicodin. The pain had subsided and I was back to normal and ready for the next fill. It does take some time. The bubble I felt on my expander went away. I am at 550cc and I didn't have that much pain like the last time. I choose not to wear any support bra. However, this time I've been wearing them for two days already. I am surprise that it fit well on my expander. It's a 38 C size.

    Here's the funny part of my story that I want to share to all of you. Today, my 2nd day to wear my support bra (this has a zipper in front), I was at work and the zipper just came-off by itself. Inside of me was laughing so hard. I though it was so funny. I actually have projection showing. lol.

    Angel10, you are totally right. Your can tell you when enough is enough. I totally agree.

    Mooretennis, good luck on your exchange on the 15th. I have not heard from you for awhile Glad that you are doing okay.

    Swest, how are you doing? I always think of you when I have this brick feeling when I wake up in the morning. Hot shower and exercises. It always works all the time.

    Love you all. Take care. Celine

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  • kittycat
    kittycat Member Posts: 2,144
    edited September 2009

    So, I really thought I was doing well, until I had my first fill.  Then, I thought "oh the pain will subside and I'll be back to normal in a few days."  So, it's 5 days from my fill and now my chest is all bruised.  Is this from the surgery?  I'm almost 3 weeks post op.  And the lower back pain.  It won't go away. 

    I hate being constipated, so I haven't taken any pain pills in 2 weeks.  Tonight I debated - do I take the Percoset or do I just have a small glass of wine?  I opted for a half pill of Percoset (no wine, obviously).  I ate 2 plums to hopefully give me regularity!  LOL!

    I feel a little better, but the back pain is still there.  I found this rolling ball thing at a sporting goods store.  My hubby could use it to massage my shoulders and back.  It was $15, so my hubby and I decided it was a rip off.  Now, I'm thinking of going back to get or maybe they sell it on ebay???  Besides, my hubby's playing raquetball and could use it too! 

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  • Angel10
    Angel10 Member Posts: 682
    edited September 2009

    Kitty...if you can afford the $15 I would say go for it! I have lower back pain from all this...I think part of it is from sleeping on my back all this time. I do stick a pillow under my knees, but I still have the back ache.  Earlier the pain was inbetween my shoulders. I think that was due to the change of posture, tension etc.,...I could only talk hubby into 2 back rubs...Cry

    I started to beef up my calcium, VIT D and magnesium these past 2 weeks. Today I start Tomoxifen. When I was constipated the best thing I could take was milk of magnesia.  MAGNESIA as in MAGNESIUM! I did not realize that all Philips Milk of Magnesia is... is magnesium!! After 3 days of 3 mom pills taken for constipation about 2 weeks ago after the exchange, I now take 1 mom pill at night for nutritional purposes and am going much smoother than I have in a long time.  I felt like an idiot when I put 2 and 2 together.  Recent anecdotal reports indicate that magnesium is good for hot flashes too so I may be doing double or triple duty with that one pill.

    Kitty. I see you are ER-, PR-, but it probably would not hurt!  Calcium ,D and mag are all good for breast health...even if we don't have them anymore!  Wink

    God Bless!

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  • my560sel
    my560sel Member Posts: 1,065
    edited September 2009

    Angel and Karen, thanks so much for your support. The pain is decreasing and so far I think I'll be OK for my next fill on Sept 15th. But I'm definitely not going to get a big fill - I think about 40 -50 cc's should do it, not any more! We really do know our bodies better than the Ps's do and you're right, we have to tell them when we think we're ready. They may have the technical knowledge but we have the practical one! My main concern is having my exchange by Xmas. I really don't want this to drag too long and I know that with where I am with my fills and then the waiting period, it's going to bring me right into the holidays. Not really what I want as I spent last Xmas worried sick because they had just found "something" on my mammo and because it was Xmastime, I had to wait till Jan 5th to get my biopsy (which turned out to be BC of course)

    Terri

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  • swest
    swest Member Posts: 680
    edited September 2009

    Celine - I am doing great.  All ready back at work.  Getting used to my new set of "girls".  I think it's going to take some time for me to fall in love with them. 

    Kittykat - How much did your PS fill you?  Mine only did 50cc's at a time.  But I went in weekly.

    Terri - What kind of wait is you PS saying you need?  Mine said 3-4 weeks.  I waited 6 weeks just because his schedule was full.

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  • kittycat
    kittycat Member Posts: 2,144
    edited September 2009

    Angel, I also sleep with a pillow under my knees. The lower back pain just doesn't seem to go away!  :(  I will try MOM.  I've tried it before, when I went on vacation.  yes, it does make sense to get the magnesium too.  :)

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  • my560sel
    my560sel Member Posts: 1,065
    edited September 2009

    Swest: I think my PS had initially said something like 4-6 weeks. I'd have to check with him again to make sure. But I fugure if I only need one or 2 more fills, which he would spread out over 4 weeks, then that would bring me to somewhere near the end of Nov  for my exchange.

    Terri

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