continued Tissue expander pain!!

kes

Hi Ladies,

Sharon,  Your words ring so true for me. After being diagnosed I am taking a real hard look at my life. Funny, how BC makes you think about your life and what you want out of it. My DD is 8 yrs old, so I also have to think about her too. I am an older mother, as I had her when I was 42 yrs old, and to have a newborn at this age was a challenge in itself. Also I am an R.N. and I deal with people with cancer all the time and it does get very draining. When I was diagnosed it was like the world just STOPPED!!! Now on this journey I know that I need to be healthy and happy and that is my bottom line and I will do whatever it takes to get there no matter what. I need time for ME!!! And I need to do what is right for ME!!! It has been a journey and it is not over yet. Soon I will get there. I think that it takes a while for your brain to catch up to your body with all the changes that are happening. First your body and then your brain.

We will all get there eventually!!!!

Take Care,

Kerry

Chris343

Hi to everyone and thanks for being here!

Mast. in Nov., chemo until Jan.  Hate the prostheses ( last week it fell out on the street, while I was gardening!) so I've decided to have mast. in other breast and reconstruction done on both.  I too, don't want to have chemo again!  So I'm just starting to research  and picking the plastic surgeon.  I read here that you can have permanent expanders!  Is that what you are all doing? I really don't care about the look of my breasts, I just want two!  My surgeon left some nipple and skin so I thought they could just plop in an implant but now realize there is more to it!  And lots of pain!  Any info you can share will be appreciated......Chris   

kes

Hi Ladies,

Welcome Chris to the expando group. Sorry that you had to join us this way. I am having my exchange surgery tomorrow at 4:30pm. I had the tissue expanders in place since the end of January 2008. There are tissue expanders that can be inflated with saline and when they are the size that you want then the port is removed and they stay in place. I chose the silicone gummy bears that are anatomical shaped as these were the ones that my PS said she used the most for her reconstruction patients. Will let you know how things go after the exchange. I never thought that this day would come back in February when I was going through the expansion.

Take Care,

Kerry

kes

Hi Ladies,

My surgery went well yesterday. Only in the O.R. for 1 hour and 15 minutes and came home on the same day. No drains. Feels not too bad. I am wearing a tight tube top and have a piece of 1" foam above the new foobs and across my chest to keep them from floating up. PS said that everything went well. Cannot shower and must wear this foam and tube top until I have a F/U visit with her on June 17/08. Have to take baths and do my hair in the kitchen sink. Oh well, if it helps, I will do anything at this point to have good foobs.

Hope all is well with everyone,

Kerry

P.S. The relief was instant from the tissue expanders. Pain level was at a 2-3 out of 10. Only took 1 percocet this afternoon for pain. I poked them with my fingers and they are SOFT!!!!! What a GREAT feeling. Hope that they are big enough but I will give them time like everyone says.

Bye Ladies.

kt56

Kerry,

So glad to hear your exchange went well. I'm having mine next Wed. I am so anxious to get rid of these expanders. Please share any advice and details as you recover. I know most don't get drains but I was wondering about a catheter. My mastectomy was the first time I ever had one because of the length of the surgery. You don't have to have one with the exchange do you? Keep up with the smooth recovery.

Katie

kt56

P.S.   What size/type implants did you get.

Katie

kes

Katie,

I did not have a catheter. I was expanded to 335cc and this was a C cup on me. I know that this sounds weird, but it was and the PS said that with implants she could make me a B cup or a small C which was all that I wanted. This was the hardest thing for me to get my head around because a lot of women were having large amounts of saline in their expanders and having large implants put in and having a B cup or a C cup when done. The PS put in 275cc anatomical shaped silicone (the gummy bears). So far they look O.K. I am going to give them time 6-8 months as everyone says to let them drop and fluff. If not satisified then I will ask her to exchange them for another. I have come this far and my tissue expansion was NOT a piece of cake. I was only in the O.R. for 1 hour and 15 minutes. Feel good today, doing the laundry, making beds, and will make dinner. You will feel instant relief and SOFT!!!! Let me know how it goes for you.

Take Care,

Kerry

JanCM

Wow Kerry!  I am so jealous.  This kevlar vest (as someone on this board calls it) really needs to go and I am sick of it!  I want soft foobs too.  But it won't be long.  June 23 is my tentative exchange date and two more fills prior to that. 

Congrats!  And take it easy!

-Janelle

kes

Janelle,

June 23 is not that far away. I went back to work 4 weeks ago and it really made the 4 weeks go by fast for me. The relief is instant. I was poking them again and they are SOFT!!! What a difference, I can't believe it. In February, I thought that I was never going to get out of expando h*ll. I will have to go back and read my posts. I felt so terrible. You will feel better. Hang in there.

Kerry

AnneW

Kerry,

I'm so glad you have gotten the exchange and are doing well. Relief is sweet, isn't it?

Anne

kes

Anne,

This feels great!!! Soft right away. Pain is a 2-3. Took 2 extra strength Tylenol last night before bed. What a difference. I keep poking them and they are soft. I am not used to this. I can see them through my tube top and they do need to drop and fluff, but I think that I have a cleavage. I never had one before. This is thrilling!!!! And to never have to worry about Breast Cancer again. What a relief!! Life is GOOD!!!

Kerry

rubytuesday

Kerry, Congrats on your exchange.  I hope you love the new twins!!  Do be careful even though you feel great, you have just had surgery and you don't want to jeopardize your outcome by doing too much.  Leave the bed making and other household chores to someone else or if no one does it....the REALLY good news is, the work will still be there when you are healed....  Take care, RELAX and best wishes!

kes

Ruby,

Thanks, this feels great. My piece of foam is hot, but oh well. I will keep it on until June 17th. And then the big unveiling!!! WOW!!! I can hardly wait.

Kerry

azsunn

Congratulations to all of you ladies getting your exchanges. I will be following this thread to read your experiences. 

I finished chemo two weeks ago, and am about half way (?) through my expansions.  I did not get them weekly during chemo, only when I felt like it.  I'm hoping to get to a B or  small C when all this is done.  I am having such a hard time grasping what the  final result will be.  I was large before and don't want to be that again.

Hope your healing continues, and time speeds for those anticipating exchanges.

bestock

I may have saline tomorrow in expanders. after surgery I  got 100cc

. I am only 5 days out of bilateral. I hope they do not try to do much I was never big and do not really want to rush the process..

rubytuesday

I breezed thru expansion but was only filled 30cc at the time of my surgery and then my PS waited 3 weeks before the first post-op fill.  If you already have 100 and it has only been 5 days, I would have to question the PS.  You don't want to be uncomfortable.  I also always told my PS when I could feel the fill (which was usually 60cc and my fills were every 2 weeks).  There is no prize for being the first one filled....in fact, quite the contrary.  Best wishes

suave

Sharon, your story reads like a movie. I am glad you can still smile.

Kerry, I hope your surgery goes well. I am cheering for you.

Suave

kes

Bsnevada,

Try and go slow with your fills. I had a lot of pain with my fills, but I was expanded very fast. By 2 weeks and 4 days post op I was up to 360cc on each side and in a lot of pain. My PS was trying to fill up the space that a seroma (fluid pocket) was forming in with tissue expander. I tried to stay at 360cc for a week and 1/2, but I had to go back and have 25cc drained off of each side, which gave me instant relief. You can have some saline taken off if you are too uncomfortable. I would not let the PS put much in at 5 days post op. Maybe only 30cc on each side. At the time of surgery I had 150cc put in each expander and my first F/U appt was at 6 days post op and I was filled with 60cc the first time. I was just getting over the surgical pain and only felt good for 1 day and then had the expansion pain. Take it slow. It is better for your body and mind. Good Luck and let us know how it goes.

Suave, Thankx for the well wishes. Have not seen you and Ruby around much. Hope all is well.

Kerry

Dejaboo

Hi Kerry,

  Glad to hear you have so much relief from the exchange!    Hope the rest of helaing goes well.

I have been ready to give up 4 times about in the 2 1/2 weeks since bm w/ iexpanders.  I am still on Pain meds.  I have had about 5 days where I feel good.  I then think- ok- the worst is over & the next day or that evening I will be in so much pain I cant take it.

I have been keeping up with stool softeners...But apparantly not enough.  I thought the expander pain was alot...Last night I thought I would die on the potty    So the BM pain was as bad as the bm pain- LOL

I get so much fluid built up around the expanders- I know that is causing alot of my pain.  On my side - its so puffy.   Id like to wait 2 months before my next fill

I hope I can make it til my exchange.  I was not expecting  24/7 pain for 4 months.

Pam

sneakypie

Hi bsnevada. I had 200cc in each at time of surgery. They waited 3 weeks for the first fill. Since tissue on one was compromised, they waited an additional week. Then at that 4-week mark, PS wanted to do 100cc per week, but I was too uncomfortable, so we compromised on 75cc. PS decided, a week later, to keep it at 75cc and agreed that, if I continued to be uncomfortable and in pain, he would make it less (or even remove some). His nurse also said I did not even have to come in for a fill if I was not up to it. Lesson to me: I am in control.

kt56

Pam,   

Sounds like you're going thru the same issues as I did during expansion. I was ready to throw in the towel many times. Hang in there, it does get easier. Trust me, there will come a point when the torture of expansion becomes a mere nuisance. I had my bm in Jan and am having my exchange on Wed. I'm hoping for a speedy recovery from this exchange so I can start the 2nd half of this year as a healthier, happier woman. I'm in no rush to have nipples. I just want to go in a store and be able to buy a bra that will fit.  Hope your expansion passes quickly and the process gets much easier for you.

Katie 

kt56

Pam,   

Sounds like you're going thru the same issues as I did during expansion. I was ready to throw in the towel many times. Hang in there, it does get easier. Trust me, there will come a point when the torture of expansion becomes a mere nuisance. I had my bm in Jan and am having my exchange on Wed. I'm hoping for a speedy recovery from this exchange so I can start the 2nd half of this year as a healthier, happier woman. I'm in no rush to have nipples. I just want to go in a store and be able to buy a bra that will fit.  Hope your expansion passes quickly and the process gets much easier for you.

After the first few fills as the expanders expanded and filled out it was actually more comfortable. But I got 60 cc every week to week and a half.

Katie 

gmgianni

Hi everyone. A new girl here.

I recently had a bm with nipple sparing. I am going tomorrow for my second fill for my tissue expanders. They started me with 100 cc's at surgery. The last visit, two weeks ago, they only filled me with 50 cc's because they didn't like the way my nipple and areola was looking on my left breast. This has been only a month since the mastectomy, but I am still in pain. Is that to be expected? I am small so I guess that can be part of it. I know this sounds silly, but I am actually afraid to ask my ps for pain meds. I was on percosets after the surgery, which worked great. When I asked for another scrip, they gave me the hydrocodone, aka, high grade aspirin. I told them that wasn't working for me and the nurse told me that by this time aleve or tylenol should be working for me. So I have shyed away from asking for anything even though after my last fill, I was in so much pain the next few days.

I also haven't slept an entire night since May 13th. They gave me ambien and it does nothing for me. I think my comfy sleeping days on my stomach are forever gone.

I am currently at 150 cc's and supposed to go up to 400cc's. Not quite sure what size that comes out to be.

One last thing, if I am a month into my expanders, when they are completed with the fill, how do they look? Do they look somewhat normal? My husband is taking me on vacation in August and I just don't know what to expect myself to look like.

Thanks!

G 

rubytuesday

G, Take the fills slow and easy.  100 at surgery is A LOT especially if you are small....I only had 30 at surgery, then my next fill was 3 weeks later and was only 60.  My fills were usually every 2 weeks and were usually 60.  If your PS goes slowly and doesn't fill too much at a time, that gives your muscle time to stretch and your expanders should look pretty good.  If your PS fills too fast or too much at a time, your muscle will fight it and cause the expander to travel north (like toward your collar bone) or into your armpit.  I didn't need any pain meds for my fills.  If you are having spasms a lot of the women use Valium for them.  That may work better for you than the pain meds.  Best wishes

P.S.  You will be able to sleep on your stomach again. They actually made me lay on my expander at physical therapy (which you might want to consider too).  At first it was uncomfortable but it really helped to relax my pec which made the expander feel softer...not soft like implants but softer.  Now with implants I can sleep on my stomach too.   

kes

G,

You should not have to go without pain pills. That nurse should not have told you that you should be on aleve or Tylenol by now. Ask her if she has had the same surgery that you have had. Tissue expansion for me was painful. I was ready to quit. I was taking percocet, Robaxin (muscle relaxant) ativan (if needed, when I felt like I could not breath) Zoplicone (for sleeping). I am amazed that I was walking and talking with all that stuff in my body. Everyone feels pain differently and what they say is real. Ask the DR. for something that works for you. I found people in the same boat as me on the "continued tissue expander pain" thread, otherwise I would have thought that it was only me. You do not need to go through this with no pain meds. See what the DR. says.

Good Luck,

Kerry

P.S. I forgot that I WAS on the "continued tissue expander pain" thread!!!  I'm loosin' it, ladies!!! Must be all those drugs in my system.  LOL!!!

Mecca

Hi Sisters !

This is my first time posting a comment although I have been reading since Dec. 2.  I received my tissue expander Feb.15. I go to ps tomorrow for what is supposed to be my last fill up. (small attempt at humor to get thru). It has been very uncomfortable at times. Every fill is different. I am now at 540 cc's. PS is overinflating to 580. My largest fill was 80 cc's. That was a rough one. I go every two to three weeks. There are time's when I want to reach in and tear this bad boy out of there but reading comments today has given me strength to carry on. I am so happy to hear that the replacement surgery eases what I am feeling now. I am very visually red and sore to touch under my expander. PS says this is due to the mastectomy incision. I worry something is wrong. Has anybody had this problem?

I am also struggling with the decision to either have my left breast lifted or to have a small implant put in to enlarge. My ps says having an implant on the other side will help get a better match. I would love to hear suggestions.

gmgianni

Hi Ladies!

Thanks for your advice and input. You know what the strange thing is? Tomorrow is a month since by bm and today is my first appointment that the ps is actually seeing me. The last two visits (For my first fill and to get my drainage tubes out) I have been with the nurse. This appointment I requested that the doctor be there since he hasn't seen me since surgery.

I guess I should give you all a bit of my backround. My mother died at 52 with breast cancer. She was mis-diagnosed 10 years ago, told it was just a lump, nothing to worry about. She let it go for a few months. When the area began to hurt, she had it removed. She was told the next day she was at stage 3. Sunday, June 15, will be 10 years since she has been gone. She lasted 6 months after diagnosis. My aunt has been fighting breast cancer for 15 years. I had my first lump removed when I was 14. It was the size of a golf ball. Throughout college and my 20's I had 4 more surgeries and 6 more lumps removed. I just turned 34. Last fall I found a huge lump and went from doctor to doctor and test to test. Through all their findings, they estimated that there were about 21 lumps between both breasts. They did find cellular ones, which they weren't happy about. My breast surgeon said she never saw so many in someone my age before. She just wanted to take out the biggest ones (5) and watch the others. I already looked like a road map with all my scars and I knew that I would keep going through this year after year and maybe not be so lucky one time. Through careful research and reading wonderful boards and forums such as this one, I opted to go through with -the longest name ever- A nipple sparing, profilactic, bilateral double mastectomy with lymphnode removal and reconstruction.

My family, with the exception of my sisters and my husband all thought I was crazy and being hasty. An aunt (my mom's other sister, not the one with cancer) actually accused me of just wanting new breasts and this was the best way to do it and have insurance cover it. I was so angry. I thought of this as a chance, a second lease on life. Instead of precautionary measures, I was taking life saving measures in my mind. My mother was in so much pain when she was sick. I didn't want to ever go through that. So with the support of my wonderful husband and my sisters, I went through the surgery May 13, 2008. As painful as everything has been, I will never regret doing what I did. 

The final path report came back and guess what ladies... I thought 21 lumps were bad. They found 31 in the right, 33 in the left for a total of 64! And more of those were cellular too which can mutate and change into cancer. My breast surgeon was shocked at the report, but relieved that I made the right decision and told me she was proud of me and sometimes women just know their own bodies best.

It has been hard. Thank God, I have needed no additional treatment and everything came back clear and cancer free. I feel I was a lucky one. And though I don't feel the prettiest or the most comfortable. I do believe I have taken the first step to saving my life.

I commend all of you who are going through surgeries, treatments and care. I also thank you for having such great words to share on these boards. I invite each and every one of you to give my any imput or feedback you may have. I live 1200 miles away from my sisters and my husband works about 60 hours a week. These boards have been my support. I welcome any help I can get. I need it!

Thank you!!!!!

gmgianni

Hi Mecca.

My ps actually did a lift on both sides the day of my bm when he started the reconstruction.

I do hope you feel better. I go today to have another fill done. Had 50 cc's last time but they want to up it to 100 today. 150 cc's down, 250 to go. 

Sharon67

Hey Ladies, Greeting from a very wet northern Michigan!!!!

Kerry, YOU MADE IT!!!!! I'm so glad to hear that your surgery exchange went well.

Well Ladies, 3 more days until I get "the Cherries on Top". The Hospital called to confirm everything. They informed me that they'll use the same "cocktail" as previous surgeries. I said great!!! It's the best sleep I'll get all month. I so wish I won at the casino this week-end, I'd love to have my thighs sucked out while I'm put out. Oh well, that's life.

To all the new girls, welcome!!!! You'll find this is one of the most honest and crazy sites. You couldn't find a better mesh of women.

As to the subject of meds......ladies, if you hurt, don't be scared to ask the doctor for pain meds. Not the nurse!!! She's not the one who signs the Rx. I say this because my DH is also a Dr. All the nurses do is relay the message, go to the main man. And don't take no for an answer. I found out personally that when you deal with nurses they tend to "feel your pain" because they are also a women, but on the other hand, think we bc patients are the next drug addicts of the world. I have put a few nurses in their place the last 6 months, and even walked out and fired my own OB because of their lack of knowledge when it came to me being Dx with BC. If you have followed my thread, my lovely Dr. told me that my nipple inversion was "nothing" and I can't have a 25 year old body forever, now that I just turned 40! Well, as it turned out I had stage 3 in my left breast, and had the double mast. 3 weeks later.

I fired her when she was still my OB and I asked for something to calm me thru all the tests. She told me she'd give me 2 pills, she was concerned I'd get hooked! What a bitch, I'm dealing with BC and Dr's drilling into be with MRI's and she'd concerned for my well being! So much for her getting my insurance checks!

Okay, I'm done.......I was having a moment, again.

So the point of my story is this, If you hurt, take the pills, don't play super women, and take advantage of the help people are offering, I can guarantee you that it won't always be like your feeling today.

Wish me luck for Friday, I'm not so sure I like having surgery on "Friday the 13th" but they way my life is, "what more could happen?"

Love ya all

Sharon

rubytuesday

Good luck with the cherries Sharon!!  I'm sure they will be the icing on the cake!  Best wishes