continued Tissue expander pain!!

FACECRAFTER

Allison,  Feeling tired and out of sorts is common after any surgery.  It takes a while, weeks, before the affects of anesthesia are out of your system.  Six weeks is not abnormal for you to be tired and feeling low.  For many of us, it is closer to 8-10 weeks.  Sorry, I know that is not what you wanted to hear, but it's true.  The early to bed advice was right on.

Alitman

Thank you so very much for the confirmation that I am not crazy.  I am also having weird feelings inside my TEs - it feels like somthing is sloshing or moving.  I can't feel it on the outside - just the inside.  Could this be the partial fill of the TE's?

Allison

ilovehorses2

Allison,

  Welcome, Isn't this site great!   I had that feeling at first too. It hurt when they sloshed around.  After they were filled more it went away thank goodness. I was filled to 250 cc after my surgery. I was shocked to see that I had some cleaveage. I never worn any of the padding I was given. I too was bummed about not having any energy for so long. It has taken a long time and is slowly getting better. I hope the exchange doesn't take me this long. Good luck with the fills. Di

Alitman

Di -when did you have your surgery?   I am hoping to get my first fill at my next appt next week.  I can ony hope it won't hurt as badly as what I have already experienced.  Thank goodness I have a lot of support here at home.  My Aunt came to take care of me and my work friends have periodically brought food by.  My son (19) is doing the best he can - but - he is still 19!!  I wish the best for you and everyone else posting on this site - I am so glad to have happened upon it.

Allison

Cher222

Hey Ladies! Today is my first day here and I am so glad I found this site. Im 34 and just had a BM (learning a new language here) on 6/18/2009. At surgery- I was given 360cc's and just got another 60 this past Monday. I still feel like I have a giant rubber band that is crazy tight wrapped around me and it is so uncomfortable. Does this ever get better or not till the TE's come out and implants go in?? I also have to have chemo, radiation and hormone therapy- as I am stage 3a. I am petrified of chemo and am devastated that I am going to lose my hair. Everyone says "its just hair" and I know that losing it means I will hopefully beat this but it is still killing me. I just keep waiting to wake up and this all be an awful dream.

terrij152

Hi Cher!  I had surgery on the same date as you.  I had bilat mx with lat flaps and TE's.  I was going to have my first fill next week but decided to postpone until I get back from vacation.  I understand about the rubber band feeling, it does get better from what I've read.  Good luck with your chemo, my sister got through it last year.  I am lucky that I don't need chemo, just tamoxifen.  PM me if you ever need to talk.

Take care!

cnemeth

Cher - I had surgery the day before you and the discomfort has morphed into an ever present feeling like I have a "too tight underwire bra that can't be adjusted" on.  My PS said during the first fill that it would probably not change much from that feeling until it is exchanged.

The fill was nothing in comparision and I was surprised that I didn't even feel the needle.  He said the feeling in my surface skin would come back so that if I were burned (for example) I would feel it.  Thank goodness!!  After all this I don't want to get them burned off and not even know it!!!  Ha!

Advil is my best friend right now and the sleeping on my back the biggest problem.  I find myself heading downstairs to the big chair as a last resort (where I lived for 10 days after surgery) and am always able to nod off there.

I had a lumpectomy, re-excision and 4 rounds of chemo prior to bilat MX and was terrified about the chemo.  It was not anywhere near as bad as I thought it would be and they have so many things available to minimize the nausea and various other reactions.  It seems like I had a different reaction each treatment, swollen lips and itching once, total lethargy once, can't remember the others (who would have thought I would forget) and everything was either fixable or short lived.  I knew each night when I went to bed that I would feel better the next day.  Would highly recommend that you take the nausea medicine whether or not you feel it for at least 3-4 days after chemo.  I did that on someone else's recommendation and was never sick to my stomach.

Bought a wig that is in my office in case I needed it for a meeting.  Only wore it about 4 times.  Wore a lot of cute hats while getting used to being bald.  Occasionally people would look at me funny and I would wonder what they were looking at and then remember ~ Oh yeah, I'm bald.  Right now my hair is about an inch long.  A contractor was in the lobby a couple of weeks ago and asked one of my employees "who is the lady with the really short hair?  she is hot!".  Imagine that!!!  I am 50 and haven't been hit on in years!!!!  May stick with the super short cut, not sure . . . .  Would recommend the total shave when it starts to fall out as the handfuls of hair each morning was depressing.

It would be nice to wake up from the dream.  As I am encountering women in my life that are just now starting to go through the ordeal I am focusing on "passing it forward" and doing whatever I can to help them.  So many people have been there for me these past 9 months.  In a selfish way it is helping me more than them.

This website has been incredibly helpful to me.  Everyone here truly does understand what you are going through!!

Colleen

lissette80901

Hey Cher,

Don't be nervous about the chemo.  It really hasn't been too bad for me.  I think it's because I'm young, and in good shape.  You just have to be positive.  I know what you mean about the hair.  I had long, curly hair.  :-(  I cut it real short before I started chemo.  It was fun because I was able to try something I never would have.  My friends came to my house and we had a hairdresser come and cut everyone's hair.  She did it for free!  We're all teachers and showed up to school with our hair short.  The kids freaked out and then got into it.  Eventually, we all talked to the students about it, since I was working through the chemo.  It was awesome to have support.  I did 3 months of chemo, but it didn't shrink my tumor so I just had a mastectomy.  My hair is back- eyelashes, eyebrows, and a little on my head.  Enough that I can go out with nothing.  I bought a wig and wore it for special things, I just wore head scarves and hats.  Not too bad.  I also worked through chemo and exercised everyday.  I just went to bed early because I was tired but there was nothing it stopped me from doing. I have another 3 months of chemo starting soon and I know it'll be ok.  Hang in there!

geysermom

I so wanted to come back and offer hope to those who are suffering with tissue expander pain.  I had my exchange on 7/2 and already feel so much better.  I remain sore since my PS had to revise the pockets that hold the implants but the iron bra feeling IS GONE!!!

Hang in there ladies.  It won't last forever.

Julie

Anonymous

Hey, all!  Had my 6th fill today - 40cc each side - so now am at 245cc/255cc (the cancer side has more, but is still smaller-no rads).  This fill has been one of the worst - I'm not only tight, but having a hard time taking a deep breath.  Looks like advil and my soma (muscle relaxer - love that stuff!) before bed tonight.   That's okay, though, 'cause I got a date for my exchange!!  Goodbye TE's and hello softness and side-sleeping on September 21st! Well....the side sleeping may have to wait awhile...... Yippee!! 

MooreTennis

Sonia,

Sorry for the delay in responding - I went on vacation (without my laptop). My PS doesn't think my right TE is leaking, he thinks it has just shifted some in the pocket thus resulting in a slightly different shape. With that said, he wants to see me Monday. He said with me being on vacation for 2 weeks, even if it were a slow leak, after 2 weeks, we would know for sure. To be honest, I can't really tell. I think the right side has gotten slightly smaller but I may just be overly paranoid about it.

In regards to flying, I have flown within 24 hours of a fill with no discomfort. Additionally, I didn't set off any security alarms (thank goodness - but I was prepared with a letter from my PS just in case).

Thanks for thinking of me.

I hope everyone is doing well. You continue to be in my thoughts and prayers.

pammers

Hello Ladies

I was diagnosed 4 years ago and had rt breast removed along with chemo. Just last week the te surgery. It took me that long to get out of my fog and prepare for the reconstruction. I'm glad I did find this site to assure myself something didn't go wrong with surgery or I did something to make the pain not go away. But like my first part of this journey it is what it is and the outcome will be better soon. I got 200 cc's at surgery and have not slept comfortably in 4 days and waiting for Monday to get the tube out of my side which I'm hoping will also relieve some of the pressure and pain. You gals are correct in stating no one understands what we're going thru. I have 3 girls at work that had normal boob jobs and they could not understand when I emailed them why I was still in so much pain. Told them it felt like what I imagine being shot is like going thru the muscle and all that was left behind from the mastectomy but after reading these posts I know it will subside soon. Good luck to all of you and for the girls just starting this journey put the faith in your docs hands and pull the strength from your friends and loved ones and you'll be ok.

swest

Welcome pammers!  These ladies here are wonderful! 

Hang in there.  I promise that when they remove the drains you will sleep better!  Also, I found that as I was filled I slept better.  However, as I get to the end of the fill process I can only sleep on my back.  They are very hard.  Just keep in mind this is only temporary! Hugs!

Alitman

I had 4 drains post-op had two removed after 1 week and the others after two weeks.  I can now (very carefully) sleep on my right side.  I use pillows to soften the weight and kind of hold me up.  I am not yet able to sleep on my left side - but oh well - at least I am no longer FORCED to sleep on my back.  I agree about the really tight bra feeling.  At first it felt like I had bricks tied to my chest but that seems to be lessoning now.  I've not yet had a fill but I am hopeful to have this done at my next appt on wednesday.  I still nap everyday and try not to feel guilty about it.  I had my surgery 6/16.  This is the BEST website - it really helps to know you are not alone.  I send good thoughts to all those having to go through chemo or radiation - I don't have to as I didn't have cancer - yet.... My family history was so bad and I have had several lumpectomies (sp?) that it seemed that it was only a matter of time. 

Allison

terrij152

Hi Altiman, i hear ya about propping yourself up with pillows.  I had bilateral mx on 6/18 and came home with 6 drains, ugh.  Finally had the last 2 removed thursday and now I can sleep on my left side with pillows, can't quite sleep on the right side though.  They removed more tissue for the lat flaps on that side.

Good luck to you!

Barbara4122

Hi Allison,

I had my bilat with expanders on 6/16 too!  I have to go back to work tomorrow and I just don't know how I will make it through the day either...I nap every afternoon.  I get sooo tired.  I really hate these expanders but what can we do.  My surgery was also phrophylactic due to BRCA1+.

I have my first fill tomorrow afternoon...I hope it's not too bad.

I agree, this is such a great website and the women here are so brave and strong. I feel very lucky and have to remind myself of that when I start to feel sorry for myself walking around in this 'invisable iron bra.

Barbara

4greatkids

Ladies

I am 14 weeks post bm with te placement. I have been fully expanded for 7 weeks, and have about 3 weeks left before my exchange, I just couldnt take sleeping on my back anymore so about a week ago I came up with a way to sleep on my stomach. I prop one pillow under my abdomen and one under my head. So, the rock hard foobs are sort of hanging in the middle with no pressure on them.It's not the greatest, but it works for a while. ( you may have to experiment to find the right pillows!!)

Val61- congrats on your exchange date. Mines coming soon, too. It makes the te's easier to deal with knowing that they have a departure date.

Alitman

Barbara - I hope your fill goes well - I am hoping for my first fill on Wednesday.  Just remember what everyone here keeps saying "this won't last forever".  This is my new mantra - I just keep repeating it over and over. 

Allison

ilovehorses2

Allison, I had my surgery the first week in April.

I GOT SOME BAD NEWS TODAY!!! I just found out today that I may have fluid or a collaped lobe in my left lung. Or it could be an infection. I had a Cat Scan today. Family doctor will call tomorrow with results. I have had a cough and pain in my left side since my surgery, I thought the pain was from the TE's.  I have an appoinment with the PS this week to talk about and plan my exchange in Sept. This is such a bummer.I think he will have to push it back!!!  I have been feeling worse and worse since my surgery.  Now I know why. If I did any thing I would be so tired the next day and really really out of it.   I'm just getting over taking some antibotics for a skin infection in the area of my TE's. I now have to go to a Pulmonary Doctor the end of this month. I can't believe this!!! Sorry I just needed to vent. Di

Alitman

Di - if you ever want to vent, I believe with all my heart that this is the place to do it.  Try not to get too discouraged - maybe the lung can be fixed quickly and you can still keep your September exchange date.  Keeping positive thoughts may be difficult but I believe in positive thinking as an important piece of the overall process.  I am sure we will all be sending out our positive thoughts for you and your recovery,  

Allison

heymoose

To all you lovely Ladies,

The tissue expander pain does go away.  I had my exchange surgery in January and my implants are so much softer than the expanders.  The new girls look great and feel great.  My healing time after exchange surgery was very quick.  I went back to work after a week. 

Di, this is a great place to vent.  Remember, we are all going through this journey together and are here to support one another.  I am so sorry to hear about your news, I will pray it is healed quickly.

You are all in my thoughts and prayers.  Sending (((((HUGS))))) to all. 

Cheryl

Alitman

Four weeks post surgery and I had my first fill today.  60cc's in each.  I was terrfied, but I made it through with just some heaviness so far and a pin prick kind of feeling in the muscles on my left side.  I am now up to 420 ccs in each TE.  I go back next week for another fill.  I did take a valium when I got home 'cause I seem to have a back muscle that cramps up once in a while and it is very tight today since the fill.  I have to thank everyone who has posted here letting me know their expreiences about the fills and what I might be able to expect.  My PS said it won't hurt at all - well, I do have feeling in one muscle so I felt a pinch on that side, but on the other side I only felt pressure.  I am planning on taking it easy today just in case.  I will be going back to work half days next week - I am looking forward to doing something useful again. 

Allison

MooreTennis

Allison, glad to hear your first fill was rather uneventful. Taking it easy today sounds like a great plan.  Good luck returning to work, wish I would have started back with half days. For the first two weeks back, by 2:00 each day I was completely drained.

dee1961

Hello all,

I had bilat masts and TE's placed on 3/9/09. I am at 600 cc right now and the PS said I have another 325 to 350 cc to go. Anyhooo, I have had nothing but pain in my right TE since I have had it. It is not expanding the same as the left, plus it feels like it has traveled to my pit and digs the ribcage. I am concerned but the PS said it will be fine.. Has anyone else had their TE's not expand the same?

swest

Dee1961 - I am currently filled to 500cc and my right TE (non-cancer side) does not look as large as the right side.  My PS said this is very common.  He will fix this when I get the implants.  I go for one more fill next week (50cc) and wait until Aug 26th for my exchange.  I don't know how you are doing it!  to be filled up to 900cc would have killed me.  I don't have that much skin and my muscles would be screaming at me. This weeks fill was the first time I have had any discomfort.  Did you have skin sparing MX? 

Sonia

dee1961

Hi Sonia

Yes I did have the skin sparing mastectomies, I think I have too much skin, but the PS said he will fix it when the time comes. My muscles are kicking and screaming all the livelong day. I sometimes regret doing the recon. Sorry I am having a pity party, but the pain is taking a toll on me. I do have pain meds but they hurt my stomach so much that its just another pain I can live without. Thanks for the vent.

Take care all!

Dee~

Alitman

Hello Ladies...  it is 3:30am and I can't sleep.  I had my first fill yesterday and while I felt okay then, today has been a different story.  Only 420ccs and I have to go to 800 - not sure how I will make it, but I am sure I will.  I was able to nap today (because I couldn't sleep last night either) but I would rather give up the naps and sleep at night.  I find it funny that when I was young (I am 50 now) I was able to operate on little to no sleep - that just isn't the case anymore!!!

I hope everyone else is sleeping comfortably....

Allison

dee1961

Allison, I was up most of the night too, it stinks doesn't it? Well, if you are up at night you can catch me in the chat room here on this site when I can't sleep. We might as well keep each other company..lol The fills get worse pain wise the further we get along. Hope you feel better today.. Take care!

Dee~

swest

Dee and Allison - I am finding that day 3 after the fill is the majic number.  Today I feel much better.  How much are you PS putting in at each fill?  Mine only does 50cc so I have not had a bad time of this until recently.  Maybe your PS can slow down a little?

I hope you both get a nap today!

Sonia

Alitman

Dee- the fills getting worse isn't exactly what I wanted to hear since that was my first.  I'll be getting another on Monday and going back to work on Tuesday - oh well, I guess it is better to know up front than be surprised by it later.....  As for the chat room - where is it and how do I get to it?  You'll have to be very specific in your directions as I am fairly computer illiterate.  I only found this place by shear luck!!!  The fill was only 60ccs - not sure what they intend to put in on Monday.

Thanks, Allison