continued Tissue expander pain!!

Alloderm is actually donor tissue (muscle) that is used in various reconstruction surgeries.

There is the one step procedure but my PS used it to create a larger pocket to put the biggest expanders in ( they were filled at the time of bilat mx and expander placement 500cc)

I have received 4 more weekly fills and am now around 930 cc. Due to rads being needed asap ( I originally had rt lumpectomy and right after I finished chemo I learned I was BRCA+ hence the mx) I had to do this in 5 wks. There is a study that the alloderm greatly aids the viability of the tissue post rads for implant success.

Hi All,

I have not posted for awhile here.... I had my last fill yesterday an let me tell you that I was in so much pain...He only added 50 cc.. My ps asked me if this is the last fill and I said yessssssss!!!!!!!!!!!!!!!!!!!!!!. So I could not go to sleep, tried many medications like valium, vicodin and seemd they don't work... I still have a few ambien left and that hekped me. I ha to call in sick today to recuperate.....Is  this how it feels when you are at the end of the feeling process? I wonder sometimes... I was a small 34 C before surger but now I am a big 38 C. I gained a lot of weight too. Than you for listening to me.........

The whole process is barbaric, isn't it?  Maybe a few years from now they'll find a way to do everything using laparoscopy or laser surgery.  Then women will have dots for incisions rather than 3 inch monsters.

Thanks for your kind wishes Adnerb, pain is still there but I guess I am getting  use to it.(amazing what we can learn to adjust to!)

 Hello Everyone:

I was wondering if TE's can migrate or move out of position?  Mine have been a bit less painful lately, 2 weeks post surgery, but they do feel awfully high.  The are just under my collarbone.  I guess it might be my imagination.  My boobs were large and never high up.  When I look in the mirror the cleavage looks right, but it is an uncomfortable lumpy sensation just under neck.  Anyone else experience this?   Another quick question, would your PS have to tell you that they plan to use Alloderm, or do they just use it if needed?  I had never heard of the stuff until I saw your posts.

Thanks and stay well,

Mimi

Hi Mimirod, yes the TE's can travel.....I have read about this from others posts, but did not experience it myself.  Mine just filled in different ways...omne was higher than the other.

My PS mentioned he uses Alloderm during our discussion prior to surgery as necessary, but he led me to believe that it often needs to be used for a positive outcome for many women.  Not sure if that was his style to inform because I think I actually asked him about it. My sister suggested I ask about it because she had it with her BMX.

 Not sure this helped, but I wanted to respond to you. Good luck and God Bless!

Hi Angel,

Thanks for responding to my e-mail so quickly.  Yes, I am going through reconstruction and had 100 cc placed during surgery but had to have it all  removed because I was so uncomfortable.  I agreed with my doctor I would wait until the end of the month.  By that time I would be more healed and may want to go forward.  I feel like I can tell you the truth as you don't know me and I will not  feel judged.  Honestly,  I feel like I am going to have a breakdown.  After reading about 50 comments  from this sight, I realize I do not have the mental constitution to go through this for another 6-9 months.  In addition, it sounds like the refills are painful and in the end I may still feel like I am carrying around a foreign object. Everyone morning I dread waking up only to go through another day of torture. I look forward to night so I can sleep through this miserable ordeal.  I am a very independent person but this experience has truly unravelled me; I feel helpless and trapped.The only relief for me is to have these expanders removed.  I admire the women who are able to  go to work everyday; I don't know how they are doing it. 

Hi Micstehill:

I know what you mean.  The PS only told me that she heard complaints about pressure.  But they never tell you that you are going to feel like you have two creatures from the movie ALIEN poppoing out of your chest or that it might feel like the Not So Jolly Green Giant is steping on your chest. It is very uncomfortable.  I am only now feeling a bit better and that is after only 2 weeks post surgery and having some saline removed already.   I can't imagine what the fills will be like.  For now I  am doing  some deep breathing and I try to stretch my muscles as much as possible.  I AM RELLY SORRY FOR WHAT YOU ARE GOING THROUGH!  We should not have to endure this pain.  I wonder why more surgeons don't do the one step procedure where you come out with implats already?  My PS would not do it.  SO I chose this and for now, the only thing that keeps me from having them removed are the encouraging words from others that have been through it and the fact that when I look down, even though I am flat from the sides, I do see some breast mounds and cleavage.  I never thought I would care, but it does help you heal if you feel like a woman.   However, I think if my eventual implants give me any trouble or their life span weras out, I too will go with a prosthesis.  But right now I am in my 40's and have a young daughter and  I don't want her to be constantly reminded  about BC if she sees me with no breasts. 

All I can say is hang in there.  I have a larger frame and had very large breasts and was told that it might be easir for me than for a small framed woman, but we are all different and our bodies all react in different ways.  Only you will know what is best, like ANGEL 10 said. 

If you do decide to keep them in, try to keep your mastectomy bra on or buy a nice tight sport bra that zips up front and try to go to a physical therapist.  Also, if there is a WELLNESS COMMUNITY in your area? They have great muscle relaxation, Yoga and other classes for FREE! I wonder if maybe anyone has tried accupuncture or other holistic approaches.  I would be nice to hear if those do any good. 

Stay well everyone and wish me luck as I get ready to visit my surgeon and oncologist for the first time since my surgery.  Hopefully my oncotying results will be in and I pray I will not need chemo.

Mimi

Ladies,

First of all, let me say that each of you, (all of us!) are truly brave and have gone through so much more than....yes...we were ever informed of!  Side bar: I am the 5th sister of 7 to go through BMX!  3 had TE's.  1 never complained at all...1 said it was hell throughout...the third, well...she and I don't have a relationship, but I hear she suffered as well.  The final sister did DIEP.  She suffered a great deal for 30+ days but she feels she is happy with her final results. So, in the end, this, in my family history has been a mixed bag.  And quite frankly I am not sure what to make or how to read the numbers on this board of who had no problems or those who suffered terribly because it has always been my impression, that most of the women who did well were probably too busy living their life to come on this site and complain!  So realistically, those numbers could be far greater than those who post here...how would we know??

I think it would be a sound statement to say that the majority of women in our society would prefer to have boobs, versus not.  The PS have a way to give them to us...well ok..give us FOOBS! There is nothing like the real thing....but foobs they are and they do fill in a blouse.  Many women are willing to go through alot to get themselves some sense of profile and most I think also believe that the pain and suffering will be a "short term sacrifice for a long term goal".

Could any one have really told us what to expect?  Would I want to be the one who talks someone out of doing reconstruction only to realize that 3-6 months later I felt more like myself again...like it was a worth while endeavor?  My one sister who did suffer pretty much put it to me that way when I spoke to her after my surgery and said that I had no idea how much she had been through!!

Mimi, Micstehill...only each of you can tell what you can bear, and what you can live with should you continue with recon, or don't.  There are many very satisfied women here who have opted not to do recon and use prosthesis, and have absolutely no regrets.  There atr threads on this board that you should visit if you have not already.  And no one here (should) judge you.  We know that as much as we share so much in this "sisterhood" it is still very much an individual journey.  You are and will continue to be respected for what you determine to be best for yourselves...that is why women come back here time and time again.  We get it and we support you in your decisions!!

Pain is very real. It is humbling...yet....it can also be cathartic.  I am more than my boobs!! But I am also more than the pain I have endured to get them back.  I wish I were not so vain...but I am.  I have a husband that I feel would not handle me "breastless" well enough to keep me at ease with that choice, and I don't judge him for that, either. 

Take another deep breath.  Wait another day....take another pill and do as much self reflection as you can....and then decide what and how you want to live the rest of your lives...or at least the rest of the year.  You can also reconsider if "breastless" doesn't give you the sense of normal you are looking for should you decide to do that route.

Mimi....I will remember you in my nightly prayers for a good Onco score.  I was 18...right on the cusp of low-intermediate.  I opted out of doing chemo!  Many women in my situation opted in....again...another individual choice. 

Faythnme...so good to see you here! Glad to hear you are healing well!  May it continue to do so! You are in my prayers tonight as well!

 Praying for a painfree night for each of you....

God Bless!

I posted a thread to see if any of you have had an expander move in your chest.  I only got a few responses. 

So here is my story again. On Wednesday I had some complications with my tissue expander on the left side. It shifted inside my chest about an inch & a half & caused the tissue inside to tear. I was in the ER on Wednesday and had to go see a surgeon yesterday. My regular surgeon is on vacation until next week. I had to go see the other surgeon to make sure that it wasn't something he needed to operate on right away. He said that I can wait to see her next week. He gave me some pain meds to keep me comfortable until then. So it looks like I may be having another surgery here real soon ~ sooner that I had anticipated!

My exchange surgery is scheduled for 11/16. We'll see what my PS says next week when I go see her! I swear if it's not one thing it's the other with me!

If any of you have had the TE shift suddenly like this please give me some input.

Thanks ladies!

Hi girls out there with t/e's I have a few ? I just got my bandages off and can see and feel my t/e and they seem to be a little high up on my chest, is this where they start out?  How long before they start filling? Thanks for any input.

I wonder why some of us go through so much pain during the expansion process while others sail through the whole process with minimal discomfort?

For the lucky ones, what is the secret?  If you feel a lot of pain now, will it be better in the long term because your skin will be more sensitive to touch? 

I consider myself one of the lucky ones, so far, but I've only had one fill.  I know, just by reading posts from this thread, that this could change as early as the second or third fill.

I am so curious as to how others have done it.  Did their PS cut the nerves that eliminate sensation?

I stretched and exercised like crazy before my BMx.   I am hoping that this has helped me.  My PS said I can start doing light exercises again, and has approved me to attend a fitness class designed for post mastectomy patients.

Gentle hugs to everyone... 

Hi there--Micstehill,I'm so sorry you are in so much pain. I began my journey with TEs with considerable pain. But in my case, the more fills I received the more comfortable I've become. BTW, I'm older than you by a year. I had a tough time the first month or so, untill my body acepted the TEs. Plus I got sick on the pain meds, and yeast infections on the antibiotics. Not a good time. My PS insisted on slow going for the expansions with only 60ccs per time, so it was about six weeks out when I finally got some relief.

As to the turning and migrating of the TE, my right side slid into my armpit a ways and turned so the hard metal of the port poked me under the arm. Now, though, since I'm more that halfway filled, the circumference of the expander seems to have shrunk and is far more comfortable. I feel the tightness for about twenty four hours after each fill, then for the most part it goes away. I get a few spasms here and there but they don't last too long, just a minute or two.

Hang in there everyone, it does get better. I think I'm having a pretty easy time of it, but from what I read, most of us become more comfortable in time. And remember to stretch!!!

Bobbi

Nedeza,

Glad you found this web site...and yes the implants look and feel better!  Many of us can't beleive it...it is all so crazy weird going through this...but it does get better!  They don't look anything like the TE's and they are softer feeling as well. 

You can read alot of info on implant sizes and appearances on the EXCHANGE CITY thread. 

Hang in there....if your fills are almost over, there should be a light shining through your tunnel very soon!  It will get better!

God Bless! 

Nedeza,

It is under Breast Reconstruction-Exchange City...or try this http://community.breastcancer.org/forum/44/topic/728266?page=230#idx_6875

Let me know if this doesn't work.  You can always use the SEARCH function on top of this page on the right in the maroon banner.

God Bless!