TE TROUBLE

Rennasus · July 2011

I've been inducted into yet another "club" — the TE TROUBLE CLUB — and wanted to start a thread specifically for all of us out there dealing with tissue expander problems. There are many of us out there who develop complications with our tissue expanders, including (but not limited to) the following: necrosis; infection; cellulitis; swelling; lymphedema; redness; rash; rejection; delayed healing; pin holes; sebum leakage; expander leakage ... oh, the list goes on! There are many compassionate women on this thread who have dealt with all of this — and more. (Just look at the surgery list below!) Whatever your troubles with your tissue expander(s), we'd love to hear from you. Ladies who had TE Trouble and are on the other side of reconstruction are also encouraged to share your stories ... it helps everyone to know we will get there one day! UPDATE: As I write this (FEB 2020), it's been 9 years since I started this journey. Hard to believe! If I hadn't blogged about my experience, I would have forgotten most of the details of what I went through. So let that be hope for anyone going through this: As time goes by, you will forget. (Kinda like childbirth!) You can read my BC story here: https://thebigcandme.blogspot.com/2011/04/joining-cancer-club.html

*********** TE TROUBLE MEMBER SURGERIES IN 2011 ************

JULY 6, 2011: Rennasus: (right TE removed due to delayed incision healing)
AUG. 11, 2011: MondaysChild: (both TE's removed & replaced)
NOV. 4, 2011: Fluffqueen01: (exchange to squishies)
NOV. 10, 2011: MondaysChild: (exchange to squishies)
NOV. 11, 2011: MTnester (left TE removed, new one put in)
NOV. 14, 2011: Chickadee521 (exchange to squishies)
NOV. 30, 2011: Momof3infla (right TE put back in)
DEC. 1, 2011: Rennasus (right TE put back in after 5 months being out)
DEC. 20, 2011: Tatina123 (right TE put back in)
DEC. 22, 2011: Katarina (exchange to squishies)
DEC. 23, 2011: JBennett38 (exchange to squishies)

*********** TE TROUBLE MEMBER SURGERIES IN 2012 ************

JAN. 6, 2012: Survivor11 (left TE put back in)
JAN. 6, 2012: Sundermom (TE put back in)
JAN. 7, 2012: Debbiey (right TE put back in)
JAN. 17, 2012: DM13 (TE removed due to necrosis)
JAN. 2012: Moonflwr912: (left TE removed due to infection)
JAN. 25, 2012: Krystalrose (right TE removed due to infection)
JAN. 27, 2012: Beebop (both TEs removed due to infection)
FEB. 2, 2012: MarcyK (left TE replaced)
FEB. 3, 2012: MRochon (Salpingo-oophorectomy)
FEB. 7, 2012: Mich_M (exchange to squishies)
FEB. 7, 2012: MTnester (exchange to squishies)
FEB. 9, 2012: Olgah34 (Left TE being exchanged due to leakage)
FEB. 14, 2012: DLL66: (adjustable saline implant put in)
FEB. 24, 2012: SpecialK (exchange to squishies)
FEB. 27, 2012: Chickadee521 (revision to lefty & fat grafting)
MAR. 1, 2012: MKW1 (left TE put back in)
MAR. 20, 2012: Evebarry (exchange to squishies)
MAR. 21, 2012: Olgah34 (Left TE removed due to infection)
MAR. 30, 2012: fluffqueen01 (nips, lipo, fat grafting)
APR. 17, 2012: DM13 (right TE put back in)
APR. 23, 2012: Psalms91 (right TE put back in; hysterectomy)
APR. 23, 2012: JBennett38 (tattoos)
APR. 24, 2012: Greenmonkey (both TE's replaced)
APR. 26, 2012: Sundermom (exchange to squishies & fat grafting)
MAY 8, 2012: Bonseye (Left TE exchanged to squishy; right TRAM)
MAY 12, 2012: Survivor11 (exchange to squishies)
MAY 15, 2012: 1Curlyfry (new TE being put back in)
MAY 16, 2012: Momof3infla (exchange to squishies)
MAY 23, 2012: Erika8 (implant and reduction)
MAY 23, 2012: GreenMonkey (left TE being replaced)
MAY 29, 2012: Tatina123 (exchange to squishies & fat grafting)
JUNE 4, 2012: MTnester (revision surgery: out with the silicone, in with the saline)
JUNE 5, 2012: 1Curlyfry (new TE taken out due to staph infection again)
JULY 2, 2012: Orange73 (right TE removed)
JULY 3, 2012: BCAvenger (complete revision surgery, including new TEs)
JULY 6, 2012: Roadwarrior28 (left TE removed)
JULY 9, 2012: Orange73 (left TE removed)
JULY 12, 2012: LisaMarie68 (exchange to squishies)
JULY 17, 2012: Chickadee521 (nips)
JULY 17, 2012: Binc (right TE removed due to infection)
JULY 19, 2012: GreenMonkey (exchange to squishies)
AUG. 7, 2012: DLL66 (exchanging saline for silcone)
AUG. 12, 2012: Survivor11 (nips)
AUG. 14, 2012: Moonflwr912 (left TE replaced)
AUG. 22, 2012: Blessings2011 (exchange to squishies)
AUG. 24, 2012: CMartin (exchange to squishies)
AUG. 27, 2012: jill47 (bilateral incision repair)
AUG. 30, 2012: Layla2525 (exchange to squishies)
AUG. 30, 2012: Katarina (right implant removed due to delayed healing)
SEPT. 4, 2012: Dunesleeper (exchange to squishies)
SEPT. 5, 2012: Rennasus (exchange to squishies)
SEPT. 5, 2012: ShaeG45 (exchange to squishies)
SEPT. 6, 2012: Mkw1 (exchange to squishies)
SEPT. 7, 2012: BCavenger (exchange to squishy on right side due to leaky TE)
SEPT. 10, 2012: Moonflwr912 (left TE removed due to infection)
SEPT. 10, 2012: GreenEyes57 (exchange to squishies)
SEPT. 11, 2012: Rosetx (exchange to squishies)
SEPT. 21, 2012: FluffQueen01 (final fat grafting)
SEPT. 24, 2012: GreenMonkey (redoing implants with Alloderm)
OCT. 18, 2012: DigitalCowgirl (exchange to squishies)
OCT. 18, 2012: Tatina123 (tattoo consult with Vinnie)
OCT. 25, 2012: LynMichel (exchange to squishies)
NOV. 8, 2012: LynMichel (staph infection; implant removed)
NOV. 12, 2012: Survivor11 (tattoos)
NOV. 14, 2012: Redninrah (TE replaced in May, removed in Nov; delayed healing)
NOV. 27, 2012: akrazykat (both TEs removed due to infection)
DEC. 5, 2012: chrisrenee77 (exchange to squishies)
DEC. 6, 2012: Momof3infla (nips)
DEC. 6, 2012: Momof3infla (nips)
DEC. 7, 2012: Bonseye (tattoos)
DEC. 7, 2012: DLL66 (nips)
DEC. 7, 2012: LeeA (TE removed & replaced due to infection)
DEC. 12, 2012: tfee (exchange to squishies)
DEC. 13, 2012: GreenMonkey (fat grafting & tattoos)
DEC. 14, 2012: SpecialK (fat grafting)
DEC. 14, 2012: Chickadee52 (tattoos)

*********** TE TROUBLE MEMBER SURGERIES IN 2013 ************

JAN. 8, 2013: Binc (Right TE put back in)
JAN. 9, 2013: 1Curlyfry (TE put back in)
JAN. 11, 2013: RoadWarrior28 (left TE put back in)
JAN. 16, 2013: jill47 (exchange to squishies)
JAN. 22, 2013: Olgah34 (Left TE put back in with Latissimus Dorsi)
JAN. 30, 2013: DM13 (exchange to squishies)
FEB. 14, 2013: Beth1951 (exchange to squishies following TE infection)
APR 18, 2013: olgah34 (exchange to squishies)
MAY 1, 2013: 1Curlyfry (exchange to squishies)
MAY 24, 2013: SheChirple (DIEP!)
MAY 30, 2013: melmcbee (exchange to squishies)
JUN 5, 2013: patriciahurtado (TE removed)
JUN 6, 2013: not-me (exchange to squishies)
JUN 11, 2013: Kathymc (exchange to squishies)
JUN 14, 2013: psalms91 (exchange to squishies)
JUN 18, 2013: roadwarrior28 (exchange to squishies)
JUN 18, 2013: LeeA (both TEs replaced)
JUN 27, 2013: Mondayschild (right implant ruptured; both implants replaced)
JULY 8, 2013: Kathymc (right implant removed due to infection)
JULY 10, 2013: andrea623 (exchange to squishies)
JULY 24, 2013: SheaJ (exchange to squishies)
JULY 24, 2013: Lesley0417 (both TEs replaced due to infection)
AUG. 8, 2013: jnprsn (right TE removed due to seroma, fluid buildup at drain site & infection)
Aug 14, 2013: Momof3infla: (left side revision)
Aug 14, 2013: Moonflwr912: (left TE being put back in after being out a year due to infection)
Sept 4, 2013: Moonflwr912 (surgery to replace drain)
Sept 4, 2013: Michele2013 (exchange to squishies; had TE placed after radiation was completed)
Sept 4, 2013: Lesley0417 (back in hospital due to another infection)
Sept 5, 2013 Lucky777 (exchange, bilateral breast lifts and extensive pocket work)
Sept 10, 2013: Hotpinkmess (Cipro for pseudomonas; Lat Flap w/TE)
Sept 25, 2013: Mamasixtaz: (exchange to squishies)
Oct 18, 2013: Binc: (exchange to squishies following infection, TE removal and replacement)
Oct 25, 2013: purple87 (surgery to close wound after TE placement)
Nov 5, 2013: togetherness (exchange to squishes following cellulitis infection and fluid buildup)
Dec 3, 2013: goldie4040 (exchange to squishes after debridement and wound reclosure)
Dec 6, 2013: sandra4611 (exchange to squishes after infection)
Dec 6, 2013: Babs6287 (left TE removed due to rash/infection)
Dec 16, 2013: denise4603 (right TE removed due to excess fluid/infection)
Dec 18, 2013: Moonflwr912 (exchange to squishes after 2 yrs, multiple TEs and infection)
Dec 19, 2013: tangandchris (left TE removed due to necrosis & infection)
Dec 20, 2013: togetherness (implant removed due to fluid buildup, debrided and replaced)
Dec 31, 2013: Bobogirl (left TE removed due to infection)

*********** TE TROUBLE MEMBER SURGERIES IN 2014 ************

May 23, 2014: Galsal (implant being replaced due to car accident)

Jan 2, 2014: Purple87 (bilateral latimus dorsi flap after delayed healing following TE placement)
Jan 10, 2014: denise4603 (left TE removed due to excess fluid/infection)
Jan 14, 2013: togetherness (both implants removed due to rejection)
Jan 19, 2014: sherriR6379 (left TE removed due to excess fluid leakage)
Jan 22, 2014: denise4603 (received wound vac due to open wound healing)
Jan 27, 2014: tangandchris (both TEs removed due to infection)
Jan 31, 2014: Babs6287 (fat grafting on left side after TE removal in Dec 2013 due to rash/infection)
Feb 7, 2014: Purple87 (latimus dorsi flap incision infection; surgery to repair)
Feb 11, 2014: SchoolCounselor (left TE removed due to infection)
Mar 4, 2014: Naiviv (left TE removed due to infection)
Mar 5, 2014: Bobogirl (right TE removed due to infection)
Mar 7, 2014: SpecialK (revision: replacing dermal matrix bilaterally)
Mar 15, 2014: Purple87 (right TE removed due to fistula and delayed healing after LAT Flap)
Mar 19, 2014: jnprsn (TE replaced after removal following infection)
Mar 19, 2014: AnnieeC (TE re-do due to capsular contracture)
Mar 21, 2014: Lakegirl1 (hospitalized for staph infection; TE replaced; developed hives from hibiclens)
Apr 4, 2014: SpecialK (implant removed due to infection and healing issues; smaller implant placed)
Apr 9, 2014: SpecialK (implant removed)
Apr 16, 2014: theBCavenger (formerly DM13) (revision surgery: fat grafting and Alloderm)
Apr 21, 2014: Lissab (TE removed due to infection and excessive fluid output)
Apr 25, 2014: NJmomof3 (left TE removed, new one placed due to staph infection)
Mar 19, 2014: Purple87 (right TE put back in)
May 22, 2014: Babs6287 (fat grafting)
June 24, 2014: Galsal (left TE replaced; damaged in car accident)
June 25, 2014: SharonS (TE replaced...3rd time's the charm!)

***********************

Diagnosis: 12/8/2010, IDC, 3cm, Stage 2A, Grade 1, 0/8 nodes, ER+/PR+, HER2- History: BMX & TE 2/3/11; ONCOTYPE SCORE: 16. Three incision revisions (2/19/11, 3/28/11, 4/26/11); right TE removed (delayed healing) 7/6/11; right TE replaced 12/1/2011; exchange 9/5/12. Took Tamoxifen Mar 2011-Sep 2013; took Letrazole (Femara) Nov 2013-Apr 2016. In Feb 2016 I took the Breast Cancer Index (BCI) test which came back that I had a LOW risk of late recurrence between years 5-10 (my score: 1.8% risk) and a LOW likelihood of benefit from extended endocrine therapy. That's why I stopped hormonal treatment at the 5-year mark (April 2016). Photos of my healing issues are on my blog (thebigcandme.blogspot.com); search for "DELAYED HEALING" and "GIVING UP THE GHOST" posts. To read my BC journey from the beginning, start with my oldest blog post "Cancer Club" http://thebigcandme.blogspot.com/2011/04/joining-cancer-club.html then work your way backwards. :-)

Rennasus · July 2011

OK I will start. here's my TE story in all its glory:

On February 3, 2011, had BMX with TE and was filled to 350ccs on the table. (My PS believes in taking advantage of the supple skin after BMX.) Ten days later, I developed necrosis in my right incision. On February 19, 2011, had surgery to remove the dead tissue and PS also removes 50cc's on my right side to reduce the pressure. My left side is healing just fine!

Within 2 weeks, 3 yellow/green spots (not infection, but excess collagen which interferes with the body's ability to close the skin) developed along my right incision line. One of these spots eventually develops into the size of a nickel. On March 28, 2011, I go back into surgery to have my right incision debrided and restitched. My PS removes another 50 cc's.

At this point I begin eating much more protein to assist with my healing...100g's a day. Despite this, my incision develops the tell tale yellow-green spots again, but this time only the center one opens, this time to the size of a dime. I take Levaquin for 3 weeks but labs show no sign of infection.

On April 26, 2011, PS re-stitches me and removes yet another 50ccs. (My right TE is now half the size of the left, which healed perfectly, BTW.)

The new revision slowly heals! I was SO hopeful! But a tiny, tiny spot remained in the center of my right incision — and from which fluid continually seeped. I had been wearing compression vests and changing gauze dressings for 5 months. It wasn't healing and I was over it.

On July 6, 2011, I had my right TE removed. Am now in the healing process. Still waiting on path report to see if deep tissue had any infection.

Just_V · July 2011

I had a NSS UMX on my right breast June 8th, and the infected TE removed July 12th. PS said it was likely due to the restriction of blood flow to the top edge of the incision, not uncommon, and the TE was very infected - once even a bit infected, TEs must come out. Signs were low grade temp, breast swelling and redness...

Currently dealing with a dime sized hole immediately under my nipple -- the nipple looks very viable, so that is good. Hoping the incision, where the infection began, and the hole under the nipple heal this time around. PS will not reinsert TE for three months to ensure complete healing and lack of infection. Now I am sporting a saggy A cup on the left, and a pug faced, flat breast on the right, hoping for the healing.

On the up side, the tightness is gone, and my range of motion is pretty good - and I suspect I can get a massage now that I should be able to lie on my tummy.

Rennasus - thanks for starting the threat - I suspect we will see SpecialK soon.

GointoCarolina · July 2011

My story is a little different,I did not have an infection.I had prophylactic right mastectomy(left mast September 5,2008) and tissue expanders placed March 28,2011.The doctor also used Alloderm.I believe I was filled to about 180 cc.As each day went by,the pain increased.I had limited use of my arms,I could not even dry myself after a shower or reach across to itch my opposite arm..It felt like there was a metal plate on my chest,pressing into my sternum.I took my pain meds as prescribed.The doctor just told me it would get better.By the second week visit,I demanded he schedule surgery to remove them.At that appointment,he decided to remove some saline to see if that would help(I had asked him to do this before and he refused saying it would not help)He was right,as he was removing the saline from the first breast,I started having severe muscle spasms..I told him how painful it was, he proceeded to remove saline from the other breast.At this point,I broke out in a cold sweat and my pain scale was a 15..I have had pain before,but this was excrutiating.The doctor said"there is no anatomical reason for you to be in such pain" and left the room.Thank God,my husband was with me,he wanted to take me to the emergency room as he thought I was having a heart attack.I could not even talk the pain was so intense.I finally decided there was no point in sitting there, so we left.The ride home was hell.As soon as we got home, I took a muscle relaxer(not prescibed by this doctor),it took over 14 hours before it kicked in.All I could do was lay perfectly still and even then the spasms kept coming.For the next week, I lived on pain meds and flexeril.As soon as the expanders were removed on April 21,I felt better.I should say I do have fibromyalgia.I never felt like the doctor believed the pain I was having.He said he had never had anyone have their expanders removed because of pain.I still have a lot of tightness on the top of my ribcage where the Alloderm was sewn.I was not having expanders for implants,I was going to have microfat grafting,by a different surgeon.I still plan to do this.Thank you so much for starting this thread.

specialk · July 2011

vhshea - how right you are! I just started laughing when I read that.

Here are my details - Learned I was a candidate for skin-sparing, nipple-sparing surgery based on tumor size, breast size and location of tumor. Very exciting - I had been offered lump/SNB/rads based on these same stats but I felt I would never relax unless I did a BMX. Turned out to be a smart choice (some felt it was overkill) but I had not only IDC on the right but DCIS, and on the left both ADH and LDH, with numerous cysts in both breasts. Had the BMX on 11/1/10, initially SNB looked clear. 20-cell cluster found on post-op path, had AND on 12/6, with one additional positive node. By that time I had developed some necrosis on both sides. On the right it was around the nipple and the IMF incision, on the left larger areas mostly on the skin below the nipple all the way down to the incision but not involving it. On 12/19 (a Sunday, of course) I was home alone doing laundry and while reaching into the washer to get the clothes to put in the dryer I noticed the front of my velour shirt seemed wet. Upon further exam, it was really wet! I thought it was from the washer but then realized I had serum pouring out of the left necrotic area. I called my PS, he asked if I thought I could hold on until he could see me in his office, so I put a sanitary napkin on it, which I thought was pretty genious. I was losing at least a cup of serum a day, but couldn't see the PS until Tuesday a.m., I was in an OR within an hour. He removed the TE, which was coming through the skin, bathed it in anti-bacterial, excised the necrosis, and put the TE back in. 2 weeks later the incision started to split open. Back to the OR, excised a wider area, looked good. 2 weeks later, same story but this time the TE was removed. PS felt that the skin would never heal, was interpreting the TE as a foreign body (hello? it is!) After healing from this surgery I needed to get started with chemo so TE was left out through that process.

The TE has been out for 6 months - right TE has never been filled beyond the original surgical fill of 120cc. So i have an egg-shaped girl on the right - raisin on the left. I am nervously awaiting the replacement of the left TE next Wednesday (cross your fingers for me) and the process of fills, etc. My skin healed beautifully after the left TE came out, necrosis on the right healed on its own, I kept both nipples, and I am optimistic but nervous about symmetry and what that left side will look like. I will keep you all posted.

Man, I am long-winded!

specialk · July 2011

pandazankar - I think there are more like you, and a lot who try implants and have pain as well and end up having them removed too. I sure hope the micro-fat grafting is a go for you, seems like it would be so much softer. My remaining TE is still very uncomfortable, not as bad as initially, but I am aware of it 100% of the time. I am worried about the discomfort of fills and will Flexiril myself before-hand.

Just_V · July 2011

wow - specialK - you must have freaked... mine swelled but did not (thank God, rupture). Sounds like we really are on the same timeline now although you started earlier...

GointoCarolina · July 2011

I feel bad for those of you with the infections,how scary and disappointing.I had a fill a week out on one side as I had more in the other one at insertion.I did not even feel the needle and the fill did not cause any additional pain.I am keeping my fingers crossed about the fat grafting.I sure hope things go smoothly for all of you from here on in.

specialk · July 2011

vhshea - I freaked in a controlled manner. I am a military wife so we tend to freak internally! PS was calm, therefore so was I. Kind of. When I finally saw him on Tues. a.m. and he said get back in the car right now and drive down the street to the surgery center, I asked him if this was messing up little Susie's nose job for Christmas, and he said the most awesome thing. He told me that when I decided to choose him as my PS I put my trust and care in his hands and it should not be my concern if his schedule was changed - that was his problem to worry about. I am looking forward to coming to this thread to tell you the replaced TE looks fabulous, I am certainly hoping I can!

Rennasus · July 2011

Ladies, I will pop back on tonight to read your posts at length, but just wanted to send out a HUGE THANK YOU for sharing your TE stories.

We aren't alone — we'll get through this with the help of our 'sistahs'!

Kiss

Just_V · July 2011

SpecialK - I know your foobs will look great - too many before us have blazed the trail.. your PS sounds wonderful - mine is too... wonder if all PSs are that way or if we got lucky. hm.

Rennasus · July 2011

vhshea, I didn't have any of the "signs" of infection that you had. I am sorry to read that you have dime-sized hole even tho the TE is gone. Is it a black hole or yellow/green? I SO hate these complications! You and I are just 6 days apart on TE removal: mine was July 6 & yours July 12!

pandazankar: Ouch! You went through a lotta pain there girlfriend! I do hope the micro-fat grafting is your key to success. How awful that your surgeon did not listen to you! I hope you find a more compassionate PS soon. How are you healing at the moment? Keep us posted.

specialK: I am in the "odd-shaped boob" club too. I have not yet figured out how to dress myself. (Doesn't that sound ridiculous!) So you are getting a new TE on Wednesday! Yeah! Is he filling you to 120cc so you will match your other side? You are paving the way for us!

Just_V · July 2011

SpecialK - The hole under my nipple was green-yellow, and now is dark red (think that shows improvement)... I am to keep it filled with topical antibiotics...I think that since our symptoms differed, and your was due to rejection of the TE, maybe mine really is due to the top edge of the incision not healing b/c of lack of blood flow, as my PS suggested... Hope so. Was nervous about my body not being able to handle a foreign body (TE)... What are your options for reconstruction on your left breast?

sanbar8771 · July 2011

oh man...this is a great topic.

BMX: Nov 2010 with immediate tissue expanders and allograph.

Dec 6th 2010, low grade fever, redness swelling, etc. Put on vancomyacin. Infection seemed to go away.

Jan 1st tissue was too thin to expand so had to remove left TE. Rt TE was fine.

March 1st 2011 had TE replaced.

March 9th, back in ER with fever swelling, redness. Culture showed pseudomonas. WTH??

March 10, 2011, had TE removed. Now had to wait 3 months for breast to heal. was on antibiotic for 7 days via iv.

June 27th, 2011, finally had surgery to replace left tissue expander AGAIN.

July 18th, 2011, so far no infection and the TE is adapting to my body. Phew... hate cancer.

Rennasus · July 2011

vhshea... dark red trumps yellow/green any day!

Sanbar... what a ride you've been on. I am tickled pink to hear your TE is finally taking! Third time must be the charm!! How many cc's was your righty filled to during BMX? And how were/are you dealing with your uneven-ness?

specialk · July 2011

rennasus - it is all about ruffles baby, they provide excellent cyclops foob camoflauge. I have all kinds of bra-stuffing department store prosthetics and one real mc-coy. Every outfit was approached with trial and error, but ruffles are your friend. I imagine that he (the PS) will fill the new left TE to 120 to try to achieve symmetry. I asked about whether or not there will be problems due to scar tissue, etc. and he said he can put more or less to make it look like the right.

vhshea - How much protein are you eating - you need 100g a day to promote healing. If you are not currently getting that I would find a way to up it and that will help you heal. It sounds like you are making good progress. My problems were a combination of skin necrosis (skin death because of alloderm constricting blood flow) and rejection of the TE because of all the irritation. I never had any problems with infection and my PS did not put me on an antibiotic for the last surgery because he saw no signs of infection. Don't know what he will do this time because my white count is iffy - he might do it to be careful.

sanbar - reading your story reminds me of me! I sure hope this one stays for you. Hate cancer too!

Just_V · July 2011

SpecialK - wow... think I am good with protein - I've been craving protein - maybe my body knows something I don't... I had a meat loaf sandwich yesterday and today - when was the last time ANYBODY had that!

Sanbar - sorry you are going through this too, but I must say that your story gives me hope b/c I was freaking, thinking that my body would reject the TE and the implants, and I'd need a flap procedure (being awake in the middle of the night is not a good idea). But after my PS removed the TE, he told me three months immediately b/c he said that the least amount of infection will require removal of the implant... ugh. So the fact that you are good now almost four weeks in... well, it gives me hope.

Renna - I know, right! Go Red!

specialk · July 2011

Hi ladies,

I am back from surgery. Left TE is in but not as full as the right so I am still lopsided. My PS did not discuss that prior to surgery so I don't know if he did that on purpose so as not to stress the skin (that is my guess) or ran into an issue. He didn't say anything to my DH so I am guessing the first option. I am in more pain than I thought I would be but don't have the pressure like after BMX. I am so excited! I woke up with a compression bra on and the cleavage (ha! I have a little for the first time in 6 months!) area is itchy - probably from the skin stretching. Had a hard time staying asleep last night, but doing OK. A little excitement on the way to the hospital - the car stalled about half way there. We had this problem once before - one of those computer glitches between the accelerator and engine. DH jumped out to push but it re-started and we got there. I was picturing having to put in a 5 mile jog just before surgery! Never a dull moment!

Just_V · July 2011

SpecialK - you are my trail blazer... let us know EVERYTHING!!!!

sanbar8771 · July 2011

Hi Ladies, Do not give up hope. I am 4 weeks post surgery and I am feeling great. My left TE is still a little sore but I am on the mend. Yes, third time is a charm. It has been such a long road. I am looking forward to my first fill Aug 1st. Oh and I am a bit lopsided but it seems to be getting better as the breast heals. I have hope that both Tissue Expanders will become the same size in time. Have a great day!

Julie

Rennasus · July 2011

SpecialK: YAY! Great to hear things went well. It's frustrating post-surgery b/c you don't see the surgeon again and have to rely on DH to tell you whatever details there are to tell! Sounds like PS didn't want to stretch you too much just yet. Smart. YAY on your new BFF the compression bra! LOL! And i can't believe your car stalled on the way to the hospital. OMG I would have freaked out!

Sanbar: Congrats on having a fill date! So your PS waited a month before first fill?

SpecialK and Sanbar: Did you know you guys have the exact same diagnosis? (OK, Julie had 1 more node removed). But still, pretty amazing, you guys are BC twins!

specialk · July 2011

rennasus - sanbar and I do have a very similar diagnosis but I am glad she didn't have to have the Her2+ part! And yes, the DH is not always that good at remembering stuff the docs say. He and the PS are best buds and spend much time talking about military stuff - PS got a carrier landing last weekend so they did a fist bump before surgery. I am over in the bed just watching them and laughing. That was after the car stalling fiasco. On my last chemo the dog got out and decided to play keep away for two hours. DH chased the dog around and I went to chemo by myself but he showed up after dog was apprehended. This is my life in a nutshell!

sanbar - I am definitely two different sizes - did your PS leave more saline out of your replaced TE to not stress the skin? I am not worried about it because he mentioned at one of my last appointments that he could adjust fills to even them out.

vhshea - I will keep all of you fully apprised of the goings-on with the new TE. I have a post-op appt next Thurs. Right now I can say that I am most comfortable laying down. Sitting up and walking around hurts a little. My DH had to go to a meeting so I am home alone for a few hours. A friend (who has had mucho surgery) just texted me to go potty, take a half a pain pill, gather everything I need on the bed and then take a nap! I am seriously considering that exact plan. Also - I totally love meatloaf sandwiches!!!

sanbar8771 · July 2011

Renn, I think my PS wanted to wait a while before my first fill because I have had so many infections. He didn't want anything stressing out the TE/skin before the fill. I didn't mention that my rt TE had been filled once previously back in 2010 right after BMX so this new TE on the left is about the same size. My PS fills them up the same so he can watch for swelling.

SpecialK, my PS filled me up on the left the same as the rt. He wants to check and make sure I didn't have any additional swelling. I have had pretty much everything under the sun go wrong so we are taking extra extra caution. We are going to go very very slow in expanding. I might wait until next year before I do the exchange. At this point I just want 2 boobs. I dont care what they look like or feel. I am a newly wed so I just want to get back on with my life and have some clevage. I dont care if the clevage is from the TE's or implants.

I would ask why they are 2 different sizes. My left side was larger for about a week after surgery. But now everything is mellowing out. My rt side has already dropped and the skin is perfect for the next fill. I am not sure about the left. I hope everything heals well with you.

Take Care Ladies.

Julie

specialk · July 2011

sanbar - thanks - I will be asking questons next week at the post-op. They look like completely different shapes right now, but I think there are a lot of reasons for that.

I am sorry that you are having this experience as a newlywed, it has to be so hard. Having been married for almost 30 years has been such a blessing during this time. My husband and I know each other very well - he has been nothing but supportive. I know you want to look beautiful for your new husband, but I am sure he thinks you are.

Rennasus · July 2011

Sanbar, I've only been married 3 years so I know whatcha mean.

SpecialK...oops, didn't see the all-important HER2+ ... my bad. (I am still cracking up at the pre-surgery military fist bump!)

Am so excited for you guys with your new TE's. As vhshea says, you are blazing the trail for us!

specialk · July 2011

rennasus - I know, boys are ridiculous. All, some pain today - not gonna lie, but I am looking forward to a warm shower when DH gets home from a meeting.

Rennasus · July 2011

SpecialK: What's the pain from... pressure on skin? against ribs? the incision? Just gen'l pain from the TE being placed in a pocket that was all healed up? (Trying to prepare myself for my future!)

Kyta · July 2011

Thanks for starting this thread Rennasus. Here's my story.

Dec 2009, left mx no recon. Nov 2010, right prophy mx, and TEs placed on both sides. Had both sides filled to 340 ccs as of Jan 20th. Then started oral antibiotics in Jan 2011 for apparent infection on left side, then was on IV vanco for 3 or 4 weeks no change but had allergic reaction to vanco. March 8 2011 had left expander removed. June 20th had new expander put in left side and 5 days post surgery had allergic reaction to keflex antibiotics. I"m now at 230 ccs on left side and so far so good (knock on wood) except initially had terrible nerve related pain. I'm feeling good but a little paranoid…worried that something bad will happen, or that I'll need antibiotics and have another allergic reaction.

Thanks for sharing your stories….wishing you all well on your reconstruction journey.

GabiT · July 2011

My situation seems to be pretty common- bilateral mastectomy followed by immediate installation of tissue expanders. I began chemo a month and a half later. Two and a half months later my energy dropped, my eyes started twitching and losing focus and I had a vague, constant nausea. My temp was 100.03 so I called the on-call doctor who told me to go to the ER. I was put on IV antibiotics. The cause was the right TE. I had it removed. Three months after that I had one put back in. I'm hoping this one succeeds.

My first reaction is to question the process. I can't help but wonder if it would not have been better to have one surgery at a time. I began reconstruction immediately thinking it would save a surgery. If I were to advise someone I would suggest completely heal from the mastectomies first, then begin reconstruction. Chemo should figure into the equation. It might be better to post-pone reconstruction until chemo is finished. Your immune system is compromised with chemo and your body can't be expected to fight off extra infection. I would tell anyone entering the odyssey to consider these points.

specialk · July 2011

gabit - for me I had to have the recon first because I had skin sparing, nipple sparing BMX. The nipples would not have survived otheriwse, but you raise a good point. I did not have issues because of infection, my problem was skin death, which happens in about 20% of those procedures.

rennasus - I think the pain is coming from swelling that is pressing on the expander and I think it will subside on its own. It goes away when I lay down (so I just keep laying down!) so gravity and the weight of the expander is pinching something. It is way back at the end of the incision closest to my back, it is a burning kind of pain. It is not constant but it is pretty intense. My PS had me massage all over my skin after he removed the TE last Jan. and he had no problem putting this new one in. The surgery went faster than I thought it would. If you are not massaging I would ask about it and definitely start - it seemed to make a real difference. He was concerned about having to dig through scar tissue and I didn't have much.

Just_V · July 2011

SpecialK - about the massaging... So when my TE was removed... my breast, with the nipple, kind of folded in and over itself - like a towel that you dropped on the floor in a pile... so I have a fold in the breast where the two sides come together.. .are you saying that when your TE was removed and the breast was all collapsed like mine, you massaged it? When I try, the muscle underneath seems immovable... ?

TE TROUBLE

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