Failed with Tissue Expanders - please comment

Anonymous

Sherry, I can't help you with the lump question. I hope that issue gets resolved quickly! I'm sorry it took you to the ER. 

Nordy, yes, I am deconstructing. One of the main reasons I am using Dr. Massey is because of her proactive approach to LE pre/during/post surgery. I am worried surgery will exacerbate my LE and have been trying to avoid. I have truncal LE and recently felt some inklings of arm involvement. While I love the idea of natural breast tissue, I don't want to cut into other parts of my body. I like it the way it is, would rather not have any other scars. It also concerns me that my trunk relies on everything else working properly for max LE flow and not sure I want to risk monkeying around with a situation that hasn't been too hard to deal with. Dr. Massey said she thought my LE might improve after this surgery, so maybe I will feel differently down the road. The past three years have worn me out, and I need time to just feel good in my own skin again. My back, neck, shoulders and chest have been so messed up since expansion and then capsular contracture. My implant might be poking through the muscle, too, which has been painful. And, of course, the LE hasn't been a picnic, either. The other main reason I'm using Dr. Massey, is that she was the only surgeon that discussed repairing the muscle that was disturbed to create the pocket and fix it so that it lies flat and makes it comfortable to wear prosthetics. I'm sure aesthetically her work is tops, too. I figured with the LE and having to look at a deconstructed chest for the rest of my life, Dr. Massey is the best surgeon to do the job. If I feel similarly as you did, esp. if I'm concave, perhaps later I'll have her do something to help fill in that area. 

Nordy

Ahhh... gotcha Tina. I hope it all works out really, really well for you.

Anonymous

Thanks, Nordy!

Jaimieh

Sherry~ I am another one who had to deconstruct.  My PS who did my implants did not a thing wrong they looked fabulous but my body wanted them out.  My body tried to spit the implant out thru the incision line 7 weeks after the exchange.  I went on to remove them and then another to remove the scar tissue.  I was in pain non-stop during the expansion, exchange process and I felt like I was just being a baby.  Once they were gone I felt sooo much better besides when my scar tissue got infected.  I like Nordy was concave and then after the scar tisse was removed I could touch my ribs and it hurt .  I went 3 months after I removed my implants down to NOLA for reconstruction and it was the best thing I have done for me mentally.  It's not right for everyone but please do not think that you have no options.  When I was loosing my implants my local PS said to me I can do a lat-flap surgery but I don't want to do that to you, it's not right for you.  I am eternally grateful to her for making me research to find the right option for me. 

Jaimieh

Tina~ I hope that everything goes well.  You are in the best of hands with Dr. Massey.

Erica3681

Sherry,

I think it's wonderful that Nordy and Jamie, after initial problems, went on to have such successful reconstruction in NOLA. Although I have access to some excellent surgeons in my area, if I ever opted for recon I would seriously consider NOLA myself.

I think your decision to try living without reconstruction is a good one, since in my experience everyone reacts differently. Nordy didn't like using breast forms, others don't mind (btw, I've never had a breast form float out of my swimsuit, thankfully--I make sure to wear a mastectomy suit with pockets or to have pockets sewn into a regular bra).

It really is so individual. I find breast forms comfortable and enjoy being able to change my size on occasion. The good news is that if you decide living without breasts isn't for you, there are reconstruction options still available and you can have a great outcome even if you wait. 

Tina, good luck with your procedure. Let us know how it goes.

Barbara 

Anonymous

Ack! Jaimieh, you were concave, too? The closer I get to this surgery, the sadder I am becoming about how I am going to look after. I wish I weren't this vain. I know the priority is my LE health and getting my implants out so my body has time to readjust and heal.

I am paying for this process out-of-network, and it certainly isn't cheap for me, so I can't help but wonder if I should be taking advantage of this opportunity. I know DH would say "no" as his opinion to further procedures, but, but . .   Alas, I really should stay focused and take it one step at a time. 

Nordy and Jaimieh, you both had your expanders/implants out and healed before your NOLA recons? Is that usually how it works, or did you both just happen to do it in that order?

Thank you, ladies, for your comments and support. This is so helpful.

Nordy

Erica - I DID have a mastectomy swim suit!!! The problem isn't that the forms went floating away, but that the entire pocket, with the forms in it, came up and out of the top of the suit! And this is not a loose fitting suit! It was snug and well fitting, but when it was wet and with the buoyancy of the water... well... !!!!

Tina - they can remove your expanders and do your reconstruction at the same time. You do not have to wait. I DID wait because I did not know all my options... and quite frankly, I just had to get the expanders OUT because the right one was going to come out by itself if I didn't. There were no local PS that did free flaps at the time (there are 2 now) and I was just desparate to remove the expanders. Plus I had 2 little ones... but like I said, I did not like being without. Plus, like Jaimie, you could literaly touch my ribs and the looked... well, broken. For me, it didn't work... 

If you change your mind, I can almost guarantee that Marga would love to build you 2 breasts during your surgery...

Anonymous

Nordy, I've had my implants for over two years. April will be three years since my BM. I guess it doesn't matter if she's removing expanders or implants when it comes to recon. I am scheduled for April 5 but still waiting to hear from Blue X for approval. They've been dragging their feet for so long. I was supposed to hear today or tomorrow. I have hotel reservations, but waiting on air fare. At this point, the authorization will only be for removing the implants. I think I need to take this one step at a time. The idea of involving other parts of my body after having such a hard time with the implants doesn't feel right for me now. I need to see what the results are before considering anything further. I really want to be done and have time to heal physically, but I know the reality is that I may be quite disappointed with my appearance. 

Nordy

Tina - I can totally understand where you are coming from. I hope that you heal after your upcoming surgery. Whatever you decisions you make will be the right ones for YOU.

Nordy

Tina - I think AnneW had her implants removed and then immediate reconstruction by Marga. You know if you have any questions you could PM her. Just an after thought...

sbragg

Tina,

Just wanted you to know I will be thinking of you on April 5th...I wish you all the best!, Sherry

krisf

I am 39 and had bc I had a bilateral mastectomy April 10th and by the end of April my expander had split through my incision on my left side.  I had a previous reduction 7-8 years ago and apparently damaged my skin.  They were trying to save my right but it was starting to split open too.  I had both expanders taken out on the 1 May and a week later had split open again on the left side even with no expander in and had infection and had to have another surgery.  MY left side the skin was almost black and they had to remove quite a bit of skin and I am still waiting to have recon.  Plastic surgeon said he wanted to try expanders one more time before we attempt tissue transplants but because I have had 2 c-section he cant use my stomach.  I hate not have "foobs" I wear the foam prosthesis and they are ok comfort wise but are hot.  I hate going swimmng in public of fear of one falling out.  I have to have a full hysterectomy then a couple weeks later another shot at the expanders.  I want my "foobs" back.  I wouldn't change my choice I made just praying the expanders work this go around.  )

Nordy

Krisf - if I may, I would love to encourage you to get a second opinion from an MD that does a LOT of free flap reconstruction

C-sections are not usually an issue. And if ou can out off your hysterectomy for a few months, they can do it with the second stage of DIEP surgery. You do not say where iu live nora if you are willing to travel, but there are many doctors that do reconstruction using your own tissue after failed expanders/implants. Of course, Dr. Sullivan at the Center for Restorative Breast Surgery in New Orleans always gets my vote as he was my surgeon and does fabulous work. BUT there are others in the US that also do... You can PM me if you like. You cn post a question to Dr. Dellacroce on the Ask the doctor website regarding c sections and diep.

Www.breastcenter.com

http://members.boardhost.com/plastic/

Good luck to you!

Denidom

hi I know this is many years later I'm just wondering if your still active and you might actually be able to tell me what the outcome was of your situation. I appear to be having trouble with my tissue expanders as well and I just wanted to see if there was anybody else out there that has been having difficulties with them they're just driving me crazy and I'm considering cancelling all this reconstruction

kellymoye

I too am facing a probable failure with my TEs. I had radiation on my right breast 16 months prior to my mastectomy, which was 7 weeks ago. and that breast is very swollen and inflamed and sore. It isn’t healing due to the radiation damage. My PS wanted to give it a little more time at the last visit, but when I see him in 2 weeks I’m going to tell him to just take them out now so the healing can start. I can see the writing on the wall. I don’t have enough body fat for a DIEP and I don’t want a lat. So I’m going to wear prosthetics and maybe down the line try fat transfer if I am concave. I am heartbroken and I hope I don’t look like a monster.

Fryda

The good news is having a garbage tissue expander experience isn't unique. I'm 5 months post-op bilateral mastectomy with immediate reconstruction, prepectoral tissue expanders and ADM. Had only one 100ccs fill, put me in the hospital for cellulitis on one side. Currently dealing with aggressive nummular eczema across both reconstruction sites. My body is rejecting the expanders so consistently that I'm not even willing to wait and see whether I develop breast implant illness. I'm meeting with a DIEP specialist next month. If that's not an option for me, flat it is.

Not getting the cosmetic result you were hoping for is a heartache but the relief of being past your body fighting itself has to be better than being stuck in the thick of it. I know I'm certainly fed up being stuck in tit limbo while my body stays in turmoil.