Topic: Reconstruction surgeries that never end!

I hear you loud and clear girlfriend!  Had my first mastectomy back in Sept 2008-nipplesparing.  Things went well for two weeks until part of my nipple turned necrotic and it had to be debrided and packed for months.  I was on Cipro forever to prevent infections.  Then when things finally started to heal I developed a seroma the day after Christmas 2008 that seeped through where my skin was the thinnest near my stitch line.  It opened up so much that some of my muscle tissue was coming through.  My doctor expanded me as quick as he could and I had the exchange to silicone implant in Feb 2009.  July 2009 went for a preventative mastectomy on the other side.  Smooth sailing everyone thought.  Well, once again two weeks after surgery, my breast blew up like a balloon and the drain (which thankfully was still in) couldn't get it out fast enough.  They thought I was going to need a blood transfusion.  To this day, we don't know what caused it.  My doctors don't think that it was surgical related because it happened so far afterwards.  I may have pulled something.  Well, the blood actually clotted inside and I was cleaned out and drained for 9 weeks.  Yes, let me say that again.  Nine weeks in with a drain as the bruising slowly dissipated.  It still is slightly bruised and swollen.  The good news was that I don't need as many fills because it stretched my skin so much.  So, I have had one fill since then.  Not having another one until near Thanksgiving because I think anyone is afraid to touch me!  After that it will be exchange surgery sometime in the Spring, and nipples reconstructed.  It has been a looooong journey.  When it was happening to me I felt so alone.  No one tells you anything bad about reconstruction.  Then you read things here and realize that a lot of people do have problems with it.  I thank God for my plastic surgeon who got me through this.  We became cell phone buddies because I would call him constantly.  Sorry to vent so much, but I understand one hundred percent how you feel.  Good luck on your journey.  

Oh a group I fit into :( 

My time line (it's still on going as I am juicy...ewwe)

1/8/09- Bi-lat with expanders

6/17/09- Exchange

8/5- Kidney Surgery

8/6- incision on right breast opens up (stitched back together 3 times) eventually implant exposure and no infection

8/11- exchange for smaller implants..looked great for 3 weeks

early september- left blistered at incision and then opened up...restitched 3 times and right side opened.  I could bend over and fluid would leak from the incision. 

9/17- implants removed.

Since 9/17 I have been opened back up and drained 3x and I am going to be drained again on Tuesday.  Even without implants I keep filling up with fluid (it doesn't culture anything out though).  Once the fluid stops I will be having some type of flap surgery so I will not be done until hopefully fall of next year :( 

I feel like it's never ending.....

Heading into year 2 of recon for me and two years since mastectomy.  DIEP on 1 Dec 2008, hematoma drain on 2 Dec 2008, infection on flap 10 Dec 2008, debradment 18 Dec 2008, finally got the right antibiotics for pseudomona infection 24 Dec 2008, slept most of Christmas and New Year.  Contralaterial breast lift and DIEP revision March 2009, another go a fixing the very healthy but ugly flap July 2009.  Just thought I'd slot some sinus surgery in as something different (scheduled for next week), then back in to have a second flap to improve the outcome probably in Feb 2010 - I am not sure whether there will then be subsequent revisions.  I am holding out until my foob looks okay before I get the nipple tatoo.

Swim~ Kidney surgery was for a birth defect that was detected during a bone scan.  I healed externally fine from that surgery (Thank you God).  I am supposed to be flat chested now but my fluid build up has me at an AA size....grrrr... I had a drain after surgery a pemrose (or something like that) and it was removed after it stopped draining but come to find out it's just soft and my body clogged it up.  I would like to just have the darn drains and be done with the fluid releases.  My PS cuts open the incision and drains it that way.  I make a huge mess of the office everytime. 

My next stop will be either IGap or Sgap (I think) that I am trying to have done in NOLA.  I have local PS but they do not do either surgery frequently enough for me.  I think once a month isn't enough for me.  I don't think that is specialized enough for me.  My PS doesn't do flaps but she will follow me once I get back here if I need her to.  I love my PS. 

Tammy Lou~ Is that you from YSC ??  I think of you everytime I have a problem so I just keep turtle'n on. 

Ladies, I feel your pain. Double mx in Sept 2008. I had stage 2 breast cancer in the left breast, third one in the family. Surgeon thought it would be too long to wait the 3+ weeks for the BRCA gene test.  12 days later, infection in right breast (the one without the cancer). Plastic surgeon left it open and had it packed for 10 days. PS goes in and closes it up, then 1 week later decides to put another TE in, because the Infectious Disease Dr says it is ok. Went through 6 months of chemo, finished 4/15/09. Started radiation on left breast 5/15/09. Two weeks later, got a seroma in the right breast, had to have surgery again. TE was taken out, breast remained open and packed again for 2 weeks. In July 09, had the right breast reclosed with no TE. Exactly one year from the first infection, had a hematoma burst in the left breast. There was a slight opening with a scab on the left breast from radiation which allowed the hematoma to leak out. I am very lucky that it had a place to leak out so it did not turn into sepsis.   Needless to say, the doctor opened the left breast, cleaned out the hematoma, replaced the TE and put a new TE in the right breast. Two days later, found out that the left breast that had the hematoma had a bad bacteria in it so had to have surgery again to remove the TE and had the breast packed again for 10 days. The infectious disease dr put me on 2.5 weeks of IV antibiotics.  Went back in 10 days later to reclose the left breast and was told no more TE in the left breast. I made the decision to have the PS remove the TE on the right breast and I am now without any reconstruction. After numerous surgeries and mutiple infections, I had made the decision to heal and not have any reconstruction. Maybe years down the road but only option is the flap. I am not sure I want to do that, my life is more important than any more surgeries and hospital stays.  It is very hard for me not to have breast, since I had such large breasts and made the decision to have the double mx and do not have the BRCA gene (which I did not know at the time of the double mx).

I wish you all the best. I am doing my best to keep my head up throughout this situation!

I too am on the slow plan! 

7/2008 Bilateral Mastectomy with Immediate TE Reconstruction 
9/2008  690 cc fills completed
11/2008 Infection in Right TE; weeks of IV antibiotics with no response
12/2008 Surgery to removed infected TE and Alloderm.  
7/2009 Right TE  and new alloderm re-inserted
8/2009 Redness and warmth developed and we feared infecton.  6 weeks IV Antibiotics       9/2009 Antibiotics completed/ fills to 690cc completed -- So far so good!

I'm hoping for an exchange early 2010.

Hi Swim and others,

I saw my infectious disease doctor today in preparation for my next try at a new TE on November 11th.(third time) .. He really feels the odds are so slight that my TE will get infected. My first time it had to be removed it was not due to infection but necrosis of the skin. He is prescribing I take Bactrum after the surgery. I am hoping for the best. I sort of feel so much has happened already that this time it will go right.

Bender..You have been through so much. Maybe taking time off to heal is the right thing to do.

It's funny but not really that so many ladies have such little difficulty with their reconstruction and others have such a bad time. I guess we all have to remember that being cancer free is the most important piece in all this stuff.

Stay strong ..

Hugs,

Francine

Well I am still on the roller coaster...

I am now infected on my right side from my seroma's SO tomorrow sometime I will be going to the OR to have the capsule removed on both sides....  I hope my next reconstruction try does not have all of these issues.

Hi Fellow sisters!  WOW, you have all been through so much more than I have,  I am now going on 17  months since my Bilat mast. with TE. I have had my Exchange in Feb. and have had 2 unsuccessful nipple surgeries due to both times having the tissue becoming necrotic  and waiting for healing took time,even with a skin grafting from my tummy.  I am now going through tattooing and have to forget about nipples as my PS is afraid to puncture the already very thin tissue.  So he is going to 3D me  nipples. Oh well, I guess after reading your stories I should feel grateful I didn't get severe infections.  This was a great topic you started Swimangel. I wondered if anyother women has similar problems with reconstruction.  Bless you all and Gentle Hugs! Jeanie

Jaimeh I hope and pray your next reconstruction attempt is more successful - and that you stay strong to get through it all!

Pam - thanks for sharing your story here - and I'll be praying for you on Nov 5th...........from all we've read, I think you'll be in really good hands - and after all you've been through, you deserve nothing but the most beautiful outcome!

Hi Jeansbeans - love your screenname! I've seen very realistic and beautiful 3D nipple tattoos - I'd be tempted to get a 3D "fipple" myself, except I only have one "foob"........so I need the projection to match the real side. Good luck and let us know how they turn out!

I have had 7 surgeries now, the first 5 were getting rid of the cancer. I had lat flap during 4th surgery with expanders. Then 5th surgery expanders were replaced and final bit of cancer removed. Then less than a week later I developed infection on left side. After a iv antibiotics, they did a washout, it didn't get better so more iv drugs, then finally they took te out.I found out today I had pseudomonas aeruginosa, it's a bad one.  I spent a week in the hospital all alone out of town on IV antibiotics.  My hubby couldn't be there. I went for post op and she said we would put back in te after 3 weeks (OCT 29TH), then got a call she wanted to wait a total of 6 weeks (Nov 17th), She called yesteday and wants to wait a full three months, so sometime in January. They won't even schedule that far out. I finally let my husband see me last week. I am very depressed and feel so unattractive. It is just setback after setback. Then everyone around me is "well at least the cancer is gone". Yes it is Praise God. But I am still a physical and emotional wreck. I know the scars will fade but right now I feel like frankenstein. The scar on my back is nearly all the way across just a few inches in the middle not cut. It goes almost to my underarm on the sides. Then there are all the drain hole scars 6 total to date and more to come. It feels like life is out of control. I don't make any decisions I just ride this roller coaster. I am alittle relieved about waiting til January as it will give me sometime to just be me and not think about when the next surgery is, next doctor appointment ect. But reading all this lets me know I am not alone. MY BIG QUESTIONS IS...WHERE DO WE GO FOR THE EMOTIONAL HELP WE NEED, I CANNOT FIND ONE BOOK ON IT. SOMETHING THAT TALKS ABOUT DEALING WITH BODY IMAGE AND SHARING WITH OUR PARTNER OUR BODIES. I have looked and can't find anything. He went with me to my last doctor appointment and I had him come back. It was the only way I could let him see me like that. Then we stayed the night out of town and took the plunge back into intimacy. That helped me feel like a wife again. Not having that part of my life impacted my self worth and ability to feel loved greatly. He hugs me all the time and tells me he loves me thankfully. I just feel like I have a great big flashing sign on my chest that says look at this mess. I cannot wear any of my clothes from before as they feel to exposing. Even v neck t-shirts, definetly staying away from sweaters this winter. So it's button ups and layers. PLEASE IF ANYONE KNOWS A GOOD BOOK FOR THIS, OR WHERE TO FIND SOMETHING ONLINE, OR EVEN IF THERE ARE GROUPS YOU CAN FIND PLEASE DIRECT ME. I LIVE IN OREGON.

BLESS ALL OF YOU FOR SHARING SO OPENLY AND MAKING OTHERS NOT FEEL SO ALONE IN THIS. {{{{{{{{{{{{HUGS TO MY SUFFERING BC SISTERS}}}}}}}}}}} 

sorry to hear about that Jaimieh...did they say what the infection is? It sounds like alot of people get what I had from reading on here. Sounds like the same kind of issues staph comes from, you get it at the hospital because someone doesn't clean right. GRRRR

Hi Ellen - I'm sorry you got an infection too - the vancomyacin is usually administered for MRSA. I had all but two of my Herceptin infusions through my veins (my port became infected almost immediately) so you'll be fine - and you'll be sooo happy when your port is removed! It's such a milestone! I'm glad you joined us here - I'll be praying that you finish your reconstruction on schedule and without any more problems!

Hi Samiam,

Just wanted to ask why so long between TE removal and then reinserted. Did the doc recommend 7 months to wait. I had implant and Strattice removed last week,, doc says we can try again in 6 weeks.....????  Too soon???

Thanks Dawn

Thanks for your reply sam!   I have another question for you or anyone else with similar experience. I had areola tissue left after my mx. Now that the implant has been removed and I need to do tissue expansion again.. will this tissue remain in the center ..  or will it now look off centered.   It looks awful right now and in the wrong place.....  I was happy with my reconstruction before this!  Thanks Dawn