continued Tissue expander pain!!

Hey Susan-I pm'd you with the number. As far a scheduling my surgeries with Dr. B., I had P write it in her date book in August when I started my fills. Since he does lots of recon on kids, the worst times for scheduling seem to be when school's out (Mardi Gras and Easter for sure). Hope you get your date soon.

Hanna-You're too funny! A great sense of humor does help during some of these dark times.

Beth- I like the 'duke' naming. I just called my my personal testicles (I'm SOOOOOOOO glad I'm not a man; those things are annoying!). As far as how expansion works...There's a metal port at the top of the expander (may have a magnet in it as well). The ps or nurse uses something that works like a stud finder to mark where the port is located. They place 4 marks on your skin and shoot between the marks to get into the expander. I agree with Susan, take something before the fill to help alleviate discomfort. For me it was 3 ibuprofen and 5 mg of flexeril. Good luck!

Teri-So sorry to hear things at home aren't improving. My heart breaks for you going through this without the support of your "d"h. Remember this, you are a strong woman and have survived bc. If you can do that, you can do anything-with him or without him!!! You have a lot of support here and though we don't have the male "package" we all love and support you! Sorry yopu can't educate your sister about all this; sometimes it's easier for folks to stick their heads in the sand because the reality of what's going on is too much for them to bear. Hopefully both sis and dh come around soon. Sending lots of hugs your way.

Yall have a good day.

Margaret

Hi Jean,

Have you had rads?  You say that there was a possibility that you might need them.  I have friends who had immediate reconstruction and needed rads, were over-filled and did fairly well with them even though there is a risk.  In my case, I had delayed reconstruction due to my being a Grade 3 with 15 positive nodes.  The doctors felt it would be better not to have a foreign body and risk of infection while I was on chemo.  I waited a year after rads and expansion/implant didn't work for me in the radiated side.  There is about a 40% failure if you have this type of reconstruction after rads.  I had a lat. flap on the radiated side with expanison placement.  This surgery was far easier for me than trying to stretch the radiated side.  I was terrified of doing the flap - I didn't want the scars, I didn't want to move a muscle; but all and all, I'm quite satisfied.  Try PMing Timtam, the administrator of the Picture Forum.  She will give you access to the site.  There are a lot of pictures of women and their different procedures.  You will also see the infection of the expander and why I had to have it removed.  There is another lady (her name is Me) who tried expanders after a lumpectomy and rads.  She also posted her pictures.  The site is invaluable.  If I can help you in any way, please feel free to PM me. 

God bless,

Chris 

Hi Jade!

I'm sorry that you're feeling sad sometimes right now.  I have my moments too, but I'm not looking back too much.  My PS told me to "not look back" and instead look ahead to the full life and fun times you are yet to have.  My PS is an inspiration to me because she also had BC, chemo, rads, and recon with expanders/implants.  She knows what it all feels like.

Each fill I've gotten makes me feel happier--even if they hurt sometimes. 

You have been such a strong, cheerful presence online here--I just know you are grieving what you lost (like I do once in a while) and that's normal.

Hang in there--we are both on this journey doing the same thing at almost the same time.  Just think, by this spring we will be getting nice soft implants! That will be so great.

I am looking forward to sleeping on my tummy again.

Hello everyone.  I needed to find a place where I wasn't alone.  It is hard to explain to someone else what it is like to go to the doctors office and get that "fill" for the week.  I dread that day because that is the day the pain starts.  It is not until the two days before the fill again where I feel someone okay, and then it's off to the doctors again. 

I have gone back to work light duty, my decision.  I had someone at work "questioning" me on why I couldn't come back full time.  I tried to explain it to her, but it was hopeless.  She just doesn't get it. 

My doctor told me next time to hand her his card to have her call him, and he would tell her, "it is none of her business."  He is a great doctor.

Again, I was glad that I was not the only one feeling the pain.  I find that taking my sister with me to my appointment, and taking a vicodin helps me.

Take care, and thanks to everyone!!!  You don't know how you have helped me today. 

I SO appreciate the comments about crying. So I am NOT going crazy? Because I cried ALL day yesterday. I just have been in so much pain. My poor husband finally called the PS and checked to make sure this reaction was not out of the ordinary. So here I am with yet another refill of the percoset. They said to try to just use ibuprofen during the day--800 mg every 6 hours. I tried that yesterday but I was STILL in pain. I do feel better today, though, so maybe it was just the soaring hormones from my period?



I go in for what I believe is my 2nd fill next Wednesday. I will take 2 precosets (the heck with a valium--I need something freaking stronger!!)



I know this will get better, but sometimes, it's just so hard to see the light at the end of the tunnel.

Anne

Hi ladies,

Margaret, thanks for your sweet supportive words.  They really do help.  My sister actually came around today and we had the first discussion about my expansion process and upcoming surgery!  They scheduled me for February 18th!!!  But guess what?  I DO have a leak so he is over filling that side to compensate for the leakage so I don't go below a certain point....but I had that fill yesterday and just overnight I have lost a considerable amount of volume so I don't think that is going to work.  He wants to keep me stretched of course but the leak must be worse than we thought.  They missed the port last week and must have punctured the expander!  I am so nervous about it.  But I only have 2 more fills on the good side....he did say that if the leak gets worse he would try to get me into surgery sooner.  We'll see what he says on Friday. 

Just like many of you, I am so worried about my outcome size!  I don't want to wake up and look like a stripper....but I also don't want to wake up from surgery and think OH MAN! I should have gone bigger and blew my free change at a great set of breasts.  (don't get me wrong, any set that is bc free is a PERFECT SET!!, but why not get a little bonus?)  So I had the two dr's and 2 nurses give me their oppinion on which side looked the best.  I had one side that was barely a 34c and the other is a 36 c....without hesitation they all picked the 36c side.  "d" h is driving me crazy.  I ask his oppinion and he of course says whatever makes you happiest, it is what you want that matters.....and then he goes on later to pick me apart with, they are looking too big...not natural...etc.  He expects I will walk away with playboy bunny breasts!  I keep telling him well they are NOT going to look like a NORMAL breast job!  Oh I know that of course he says.....and continues NOT to give his oppinion.  So I am leaving him out of the equasion and would rather not hear from him.

See what I mean about this taking its toll on our relationship...

Jade, I too am very round and flat-ish.  But I did not start seeing alot of projection until about my 4th expansion.  Now I bump them into things. LOL  I had the same experience as you.  I didn't cry a whole lot over the mastectomy....not as much anyway as compared to when I started reconstruction.  I would leave the dr's office after expanding and sob all the way home and as I showered.  What a great message Wren wrote.  I too am looking forward to sleeping on my tummy!  And to not have to run interference all the time for fear someone will bump my chest!  You are so right though...we ARE grieving for the loss of our body...for the loss of who we thought we were.....for many individual things really.  That is why I have been trying to look on the brightest side I can but that doesn't mean I don't have my moments and my own projectile crying....which usually does happen on the way home from the ps's office. 

I can only handle 50 cc's at a time.  I did 75 and 100 once each and was in so much agony with the 100 I didn't go back for almost a month.  But do think of how we will all look come spring with our new selves, and a especially after being able to sleep again all night!  I haven't slept more than an hour or two in a row since these expanders were put in!  That could also add to the emotions, and crying jags, not being rested! 

Boxerdogs, I know, it is really comforting to come somewhere where people actually DO understand.  I love your PS's remark to your coworker!  I have found that no one really does understand.  So come here and rant and rave and laugh with us!  We DO understand your situation!!

Jean you have cleavage with your expanders??  Mine are a mile apart.  lol and I pray the final implants are not that way.  I too feel the sharp points or something of the expanders poking me here and there but didn't start feeling that until recently.  You are going slow wtih 60cc's every 3 weeks.  I would almost prefer that to 50 per week.  I am like boxerdog with the pain lasting until about 2 days before my next appt.  Just when I am feeling upbeat and energetic, I have to go back.  But with every appt I keep telling myself....I am one more step closer!!

Anne, you will see that light at the end of the tunnel!  It's coming, just hang in there!!  I find what gives me the most relief is 3 motrin and a muscle relaxer at the same time.  Sometimes I heat up my bed buddy in the microwave and wrap it around my shoulders and that does offer some relief because I find that if I am alittle chilled the pain seems worse to me.

Well I have gabbed a ton so I will go!   Hope everyone has a beautiful day! 

Teri.

hello. i was diagnosed in july 07, had 2 lumpectomies and finally a bilateral mastectomy in 11/07. came out of surgery with the tissue expanders...started fills and have had 90 cc in each side so far...my problem....the last fill i had was approx 2 weeks ago....they actually started to look like maybe an "a" recently....i was excited...my husband and i are on vacation now as i write this.(we are currently 140 miles away from my doctors office) my real problem is in the last few days the right side has sagged or moved or something??...it doesn't looks the same as when we left for vacation and i feel a little burning in my right shoulder and arm...the doctors office is closed until monday...it appeared to happen on thursday evening...i noticed it on friday but the dr's office was closed on friday...i plan to call on monday but i was just wondering if anyone else has had a similar experience???

these expanders are hell without all the extra crap????

anyone out there????????????

being the "paranoid" type after everything i went thru with the cancer...i am really concerned???

Hi Nik,

Yes, the expanders really are hell and to be honest they get a little worse the closer you get to the end but you will be able to handle it.  You have come so far already.  I did have the same problem and thought earlier in my progress that I had a leak in the right side because all of a sudden that side was smaller and shaped differently.  A few thoughts of what "could" be happening....first off the expanders do drop into place at some point and will be lower.  Another thing is that my PS told me that as they fill, they shift and they move.  In fact, when I started,  my ports were right on top.....one side is now completely on the lower side almost under my arm because it has shifted so much.  My ps said that was very natural and nothing to worry about.  Sometimes they will shift and it will ease up the pressure, so it is a good thing!  Enjoy your vacation while you are there and get your mind off things.  Where are you?  Have some fun for all of us!  I know I could use a vacation!!  Oh and I too, get that burning sensation in my arm and shoulder alot of the time.  The dr told me it was some nerve pain, maybe the expander pressure causing it and that wasn't anything for me to worry about either.  Of course you do need to talk to your PS about it, I can only tell  you what was the case for me.  But that might give you some peace of mind til you can get in there.

Anyway, welcome to the board and I look forward to getting to know you!  Take care and try not to worry.

Teri. 

Lady4Law

My doctor as been putting in 50 cc every week.  The pain I feel is not so much the issue.  I have learned how to deal with it.  It lessens during the week.  (It is the discomfort of the expander under my arms as well is in the middle of my chest)  The main issue has been when I need to take it easy, "some" people don't understand why.  They ask why can't you work full time?  Why do you have to be on light duty?  Why?  Why? 

I know that when I do a lot with my arms, my chest seems to feel like it has two rocks inside it.  

My boyfriend has been great.  My sister has been the best thing in my life!!!   See, we both lost our mother to breast cancer.  I am not sure what I would do without her. 

I guess I just have come to realize that not all will understand. 

Anne,

I look forward to the light at the end of the tunnel.  I am with you.. I thought I was crazy until I realized others cried, and felt things I though I only felt.  It is nice to have a place to come and cry.. laugh.. yell.. and whatever.. and no one judges. 

Dena

Teri



My cleavage, looks good today, in my tank top. I notice the right side is smaller, a lot smaller, than the left, but not sure if others notice. However, like you, both expanders travel around the sides and under my arms. This fill has been the first one to cause a lot of pain. They're very hard, and have not soften at all. They are like bricks. I cannot sleep on my back, as it's difficult to breathe and, of course, the sides are impossible,. I have tried pillows, still hurts.



As for the pacemaker, I wish I could find someone that has gone thru this. My PM surgeon, has never had a BC patient, if she has, they never underwent reconstruction. My BS never performed surgery on a PM patient. However, my PS has and has been watching me very carefully. I freaked out when saw the black & blue marks, fearing a leak from a vein the PM wires are in. Shortly later I noticed stretch marks and calmed down. I guess its just the fill. I have a feeling he put in a lot more than 60. Usually, his assistant fills the needles with the saline and hangs the saline bottle up next to them. The last time, the bag was almost empty. My PS was filling one side and his nurse the other - at the same time. All of a sudden he told her, enough. That had never happened before, so I think they may have been going for 100. (which his assistant said he rarely ever does.)



All I can say is, I am ready to stop these darn fills. I can't imagine 120 or more before the exchange. I started with 200, had 2 fills of 60 each (320) and the last must have brought me up to 400--420. I was a D before surgery and I do not want to be that big again. I'd be happy with the size I am now, only not hard as a rock. I guess I need a little more fill, to finish with my present size.

hello again...it's monday morning and i have called my p/s office to inquire why one breast expander has literally dropped about 3 inches below the other....i appear very lopsided in the mirror..lol....no additional pain....same awful pains as usual!!! lol....i just look very odd!

i have been told by the receptionist that this happens sometimes..(great girl...she appears to have gone thru this already...very comforting...as her breasts are like shelves and very much symmetrical!!!...lol))) she told me the expanders move and shift.....??

it figures that this would happen to me just as i am about to start p/t next tuesday and "in a pool"

i guess i will look very strange until he fills again???? next thursday....((ps) does anyone out there know how many cc's it takes to be a large "b" small "c"????))

anyway...hang in there girls.....there has to be a light at the end of the tunnel....

thank you for all of your help over the weekend...i don't think i could have gotten thru this without it!

(i would have worried myself crazy over the weekend)

have a nice day.....and remember nice thoughts!

smile......

every 60 seconds we spend angry, upset, or mad is a full minute of happiness we will never get back....todays message is: ife is short, break the rules, forgive quickly, kiss slowly, love truly, laugh uncontrollably, and never ever regret anything that made you smile! life may not be the party we hoped for, but while we're here we should dance!!!!

ps)try not to cry for one day.....think nice thoughts!!!!

Hi Katie,

I do not recall my expanders causing me severe pain after six weeks and I'm not sure what could be causing you this discomfort.  I remember after each fill I had alot of pain but it didn't last for more than one day. Have you talked to your surgeon about this pain continuing?

Hi Denise,

What are they filling me with?  You mean my expanders?  Saline of course.  But my final implants will be silicone.  They just feel so much more real and soft.  I am right there with you about shaving under my arms.  I get so pissed off trying to shave when my under arms are shaped so weird with the expanders in the way, like they are CUP shaped and I can't flatten them to shave so I end up missing patches.  grrrrr.  And yes, it seems anything can trigger me out of the blue.  I keep hearing how strong I am doing this alone but I just don't feel like I am.  I just do what I have to do...otherwise what?  I lay down and let the kids starve?  Let the house fall down around me?  I just do it and then have a good cry.  I don't understand how someone leaves a spouse to handle all this alone and not feel bad or make some kind of changes.  He could find a job here at home but he makes so many excuses why he can't.  I think the truth is that he can go to his hotel and not deal with a sick spouse, all the over due bills, the kids, the every day dealings of family etc.  Must be so nice for him....and to think I give him that priviledge makes me more angry at myself than anything!  I wish I could just tell him to go to hell for leaving me to deal with this alone and if he can't handle being in a family then GO and be free.  Then I might feel like I am strong.

When is your surgery again?  Jan 18?  Mine is Feb 18 and like you, it is just a countdown!!!  I will keep you in my thoughts and can't wait to hear  from you and hope you have an easy recovery.

Speaking of recovering....

Margaret...

How are you holding up??  I hope things are much improved! 

teri.

Hi Ladies,

The semester just started and I'm back at work 2 days a week (I teach from home the remainder of the week which is soooooo nice!). I was reading about cleavage or lack thereof....during expansion I had some, but not much. After the exchange, I have NONE! I can place 4 fingers between the girls. The ps told me I could get a push-up bra or something to create it if I wanted. HELL NO!!! NO MORE BRA!!! I'm adjusting to having B's. I still feel as if I look pregnant because before surgery, the girls were out front; now, the first think people may notice is the belly.

I did a little experiment in my classes today. I asked if they could tell which one is "real" (I teach college by the way and this was in my sexual behavior class in case anyone was thinking I was a freak!). Only about 5 of 25 guessed correctly. I gave the rest of them the big hint...it's the one without a nipple (it was semi cold here in New Orleans today and of course with no bra and wearing a tee shirt, people could see I was cold!).

Teri-glad your sister's coming around. My 2 cents about "d"h's opinion is that this is ultimately your decision about what's going to happen with your body. You have to have something you're comfortable with, whether it's no implant or "DDD" hooters. You have to be comfortable whatever you choose. While I did talk to my husband and kids about the pros and cons of the implant (and now wish I could rip the implant out of my body) it was up to me to make the final choice. If "d"h can't deal with it, it just sucks for him! You're going through so much crap with bc and you certainly don't need his stuff added to it. On the other hand, this may be the only way he knows how to communicate. For some men, just the very idea that the "c" word threatens their spouse it makes them take notice (whether or not the relationship is rocky to start). We raise our sons to be strong and show no fear and this carries throughout their lives. My hubby as well as both my boys all cried; I didn't (not until after the mast and saw the Frankenstein-like spot where my breast used to be). He may just not know what to say and making the comments he has may be the only way he knows how to say anything. As much as I love Larry, he has on occasion put his size 10 1/2's squarely in his mouth!  I hope things get better for you soon. I'm glad you got a date for surgery and that the leak slows to a trickle.

Denise-I had the underarm boob-expander too! It's the freakiest sensation ever because I couldn't put my arm down the larger I got. It does go away with the implant. It does suck!!!

Jean-glad to see you back on the boards! I expanded to 760 and ended up a "B" (I was a DD before the mast). I agree with Teri and make your own post about the pm. Hopefully the wires will stay where they need to be and not give you any more issues. Have all the infections cleared up? Did you ever find the camis at Wal-Mart? Hope all's going as well as it can be.

Jade-sounds like we come from the same spiritual place. I like your style and advice! 

Yall have a good night!

Margaret