Still Uncomfortable with Implants

Hindsfeet

Kate...this is all so sobering. I appreciate you taking the time to respond to my questions. I may be forced to do a temporay implant and either wait or travel to get this fat grafting.

leeinfl

kriserts - with traditional fat grafting there is a higher chance of necrosis, however with micro fat grafting the survival rate of the grafted fat is excellent.  Also a skilled and informed radiologist will be able to identify the hardened fat necrosis.  Anyone who has had fat grafting to the breast should make sure that the radiologist is aware of this.  Like we've mentioned before, surgeons tend to recommend procedures they are comfortable with, which is fine.  However, it is a disservice to women to discredit a procedure that will benefit women simply because they are not experienced in it or offer it in their practice.  This is a minimally invasive procedure that gives excellent results.  If you want this for yourself, you need to find a surgeon willing, able and competent to do it.  I'm sure your surgeon is excellent in what she does, my PS was excellent in what he does, however, I had to find someone else to give me what I wanted.  So glad I didn't take his "no - it can't be done" as my final answer! 

beacher4209

HAS ANYONE HAD TROUBLE GETTING YOUR INSURANCE TO COVER YOUR 2ND RECONSTRUCTION?

Anonymous

beacher- I have United Healthcare and they covered my implant swap and fat grafting.  I would definitely stress that you are in pain.  That this surgery is not for aesthetic reasons.

LJR

I am so glad to read this post. I had my exchange surgery in July and have hated them since I woke up! Didn't start well since I developed a bleed after the surgery - worse pain ever (including childbirth!)- they had to knock me out until they could get be back in e operating room. Anyway I hate my implants and just had a consult at Hopkins. That PS said he could improve the look (but not the feel) if I started over with expanders (those were horrible as you all know!) or go with a DIEP. I am seriously considering the DIEP but an wondering if I am crazy to do this again!

beacher4209

Thanks Kate, So who does the expressing about the pain ? Like does the ps that is going to do the surgery tell them that when he puts in for the surgery or do i have my bs and oncology dr. and family dr. all send in info? im kinda confused (as usual ) how this works..... and do not want to screw it up cause i do need this i am in pain with this stupid 500cc bowling ball going for a nice 300cc

Lr, i do not think you are crazy at all, what is crazy is that u have to do this at all!  Hmmmm why would you have to have a expander again they are stretched out right? Would a smaller implant help? that is what i am doing with some fat grafting. Just a thought.I did consider the diep myself but did not want the chance of more hard scar tissue happening on my tummy not sure if that is even possible but it seems with me if something can go wrong it will. Good luck with what ever you choose ,sorry for your pain....

leeinfl

LJR - I can tell you that after having had TEs, then implants that I hated, and now much smaller implants with fat grafting that if I had known about micro fat grafting for TOTAL breast reconstruction that is what I would have done, right from the beginning.  I would have NEVER had implants placed at all.  I've talked to many ladies who echo this - if only we had known........

My advice is to do your research.  Jump on over to fatgraftpatients.com for patient stories & photos.  Look at some of the surgeon sites, like Dr. Khouri's at miamibreastcenter.com and then make up your mind.  I know how you feel.....and you can pm me anytime.  You are not crazy and you are not alone. 

Lee

Anonymous

beacher- My BS never got involved in the revision at all.  Everything came from the PS, Dr. Khouri.  

Well, can't believe it, but I'm off this week for a consult with 2 new PS's regarding fat grafting and (hopefully!!!) getting rid of these %!@+&*@!* implants.  Not sure if I'm developing CC again but pain is getting much worse and am getting a pulling on the left implants that's worsened, too.  Not psyched about going out of state but have had no luck finding a PS in AZ who does the total fat grafting.  At least L.A. is closer than Miami! 

beacher4209

yay for you Kate!!! Good luck cannot wait to hear all about it thanks for your input on getting revision ok'ed  nothing from bs is needed.... good to know

ronqt1

Hi everyone, I have not posted since September, still trying to get used to small implant since Aug.

Kate, this answer is for you since I avoided bc.org until now. The Happy Ladies with Video was at PS's office before mastectomy when I decided to go through with the T/E route. I am still having problems with mobility on right mx side, however when I lie down flat, I am completely comfortable. I once again go to PS this Tues, -- have already done the pain management route, which affected my legs with the pills I was on. Just clueless as to what to do. As usual, it is making me crazy. Purposely avoided site to try and figure things out myself. Did not help.

Hugs,

Wishing everyone a Happy Holiday - Merry Christmas, Happy Hannukah.

lizcarolan

I should have held firm on my decision to do DIEP. I let the PS talk me into implant reconstruction. Now I have these TE's in. One side is always tight and painful, the other is lower, and obviously has fluid leaking. PS says they're never really dry. Whatever. I'm going to get another opinion and fight my insurance co to get the DIEP or maybe just go flat instead of exchange.

sas-schatzi

I 'm not sure if I posted here before. The Iron Bra feeling is finally going away and it been 2 1/2 years. Damn doc made me about 250cc'ss bigger than I should have been.  He maxed me out at 850cc's even though, I told him I had a doc do that in 1980----since felt uncomfortable etc etc. ----very clear I wanted smaller. Day of surgery TE>implants>said the same thing>>>>>>>>> rolling into surgery said I didn't want looilpop boobs.

 Got loolipop boobs with wrinkles and scars, like I was sown up with horse thread.

 I hate it when I see there adds on TV. Cluck'em.

For those considering deconstruction. I don't know what to say. I have lived most of my life in pain, this was just an addition ----oh *^%$. I wanted smaller, got bigger . How was that his choice after what I told him,

I maintain that our expectations be written on the consent

If there is a size bigger then agreed upon , we are allowed to inject either the whole amount or the disputed amount  into there scrotal sac/ Labia

I'm so sorry for anyone that is having trouble. Deciding for deconstruction is as bad as what we first experienced with mx or Bmx. I can't  do a do over, but the consent would have helped in court. Did I sue-------not a suing type of person. Have I done a face to face with him and asked ---WHY--------not yet. but it will happen. AND he will not charge for the visit. *&%^$@#.

 Bless you all , for the pain and discomfort you are going through. So, sorry Namaste and Pax sheila

anoym

Wow, I'm glad I found this thread. I just joined this month after having my DMX 18 months ago. Just finished my fifth surgery getting implants and nipples. I've decided to wait awhile I absolutely can't have another surgery right now, but I hate my implants. I have found being intimate impossible. I feel them all the time and they are always moving. What is up with that. No one told me that eveytime I moved my muscle my boobs would move. I wish I had done DIEP, but no one in my immediate area did that surgery. I wonder how the scarring is after diep? I wish I had read all this information prior to surgery. 

seacretgardn

Just here to vent. 3:30 am and still not sleeping due to these TEs. I Hate them and can't wrap my mind around having to leave them in through 4 more months of chemo then radiation. The right one is so far under my arm and pushing on something that my arm goes numb. I am aware of them every second and wake up constantly from the discomfort.



Of course the only answer the ps has is to prescribe more meds, not going to help.



SO angry with myself for not listening to myself and for not being better informed, I was in such a panick at the time of surgery. I had so many arguments against having immediate recon.



Thank you for letting me vent. Not my first time, and sure it won't be my last.



Good luck to all of you with your recon decisions.

Fearless_One

Anoym, may I ask why 5 surgeries?   That's terrible - I am sorry you have had to go through all that.   I hope they get this right for you and you can rest finally.

anoym

Dear Seacretgard....TE's were a misery I had mine for three months. I never remember having the PS say they were uncomforable, I don't think I could do that again.My heart goes out to you having them for 4 months.  I woke up from my surgery with them filled and had only a very small amt. ever added. I had to sleep sitting up. Five surgeries= DMX, Exchange of implants X2( he put in ones that were to big so I exchanged them.) Removal of extra skin and fat graphing, then nipples with skin graph. It really does seem like I have been sitting down a lot for the last 18 months. I saw my PS today and don't have to go back for 2 months. I really think I will end up losing the implants down the road, they are just to uncomfortable. I need a break from surgery. What do you all suggest putting on your scars. I didn't ask today, in the past he told me to use coco oil. I hope everyone has a good New Year's Eve. Maybe we should all scream something at midnight?

bdavis

Anoym.. You asked about DIEP scars. Mine are from the nipple down to the crease and are almost invisable now (had revisions in November)... and I was told to wait one month after surgery and then use one of two things for scars:

1. Kelo cote gel
2. Brown 3M scar tape ... microderm I think.

My doctor gives me the scar treatment so I can't say for sure.

For those in a lot of pain and considering a do-over with DIEP or hip flaps, I encourage you to read those threads. I have never had pain.... I had my BMX in July with hip flaps and then a revision on right with a DIEP flaps after some skin necrosis (from MX)... and then a revision in November. At first after MX I had that iron bra feeling for about 2 weeks, but not since. And not only do I not have pain, but my breasts are warm and soft and look very natural. I have met MANY women who have had their implants removed and had DIEP and are thrilled.

Anonymous

Sheila- My first PS made me too big, too.  (I asked for a C and got a D.)  I hear this over and over again from different women and it boggles my mind.  Are they so used to women coming in asking for boob jobs that they think everyone wants to be bigger?  I personally like your idea of disposing of the disputed amount.  LOL!

For those of you who hate your implants ask yourself if it's the way the implants feel or is it the way your pec muscles are reacting to being stretched?  If it's the implants themselves, and you don't want to deconstruct and go through any of the flap surgeries, fat grafting can make a huge difference.  By covering the implants with the fat grafting it feels just like natural breast tissue again.  You can stay the same size you are now by having the implants swapped for smaller and then covering them with the fat.  If it's the pec muscles, though, please consider some PT.  It can make a such a difference in relieving the tightness.  If you can't make it to PT, or your insurance doesn't cover it, just try to stretch as much as possible and find exercises that use your arms and shoulders such as swimming, light weights, etc.  One that I find works the best is to stand up straight and then move your shoulders back as though you're trying to get your shoulder blades to touch.  Do several reps of this often during the day and even under a warm shower.  Unfortunately, what no one warns us about is we really need to keep doing life long stretching of the pecs.  Hope this helps. 

ThisTooShallPass

Kate33 - Always a wealth of information Thanks!



I have been reading this thread and too so glad I found it. Even though I find expanders much more comfortable than my previous "gummy" cohesive implants, they do still bother me especially at night. When I turn on my side I feel them pulling.



I gave myself 1 year "test" to live with these after my last surgery (in the future) as I think I can't really give up on idea of implants if I am still in the reconstruction phase and my pecs are constantly being "bothered".

sas-schatzi

TTSP------as I said earlier the pain of the last 2 1/2 years is finally going. But I'm too big and that is what caused the problem. All this time the pecs have been stretching. From a figure standpoint I'm just too big. Had Ps done as I asked , I don't think I would have had near the problems. I told him on day one the hx of problems from implants from 1980. I had no problems being absolutely frank with him about it b/c I'm a nurse. There was no shyness about the discussion. There was  no shyness pre-op and day of surgery. Why he maxed me out at 850cc---I have no clue. Then the scars he left me with are outrageous. They only thing that has faded is the nipples -------go figure.

PLEASE, ANYONE READING THIS THREAD , THAT HASN'T GONE THROUGH FINAL RECON-----PLEASE, PLEASE SEEK OUT WHIPPETMOM AKA DEBORAH----THREAD- SIZING 101. SHE HAS MORE KNOWLEDGE THAN MOST PS'S IN THE USA. I so wish I found her before it was all done. The size I was at exchange was the exact size I wanted to be. I told the PS this. Then he went on to do do several hundred cc's more. That's what caused so much pain . The TE's hadn't stretched me that far. Now 2 1/2 years later they are. But I didn't want big boobs, I wanted medium to medium small. He may have thought I needed big boobs b/c of weight. But i've lost 53 pounds since first day of meeting. But that should not have been a factor . The only factor should have been what I told him I wanted.

These things fall into my armpits. ERGO, I most nights have to wear a bra-------and during the day--------So much for my statement on the first day I never wanted to have to wear a bra again.. The only legal recourse is the consent. On it you define your expectations. Had I done that I , could take legal action. I could without it, but if it's on the consent form, that effectively is a binding agreement. He/she tells you what are all the risks etc. if you add and No larger than say 600cc, and   he goes beyond that based on the surgical record,  he exceed the legally binding agreement.

 Kate I love that you get what I mean about the disputed amount. Imagine them walking around with either the total amount or the disputed amount in there scrotal/labia. They'd never make that mistake again.

sas-schatzi

secretgarden- and all----with what  you have described -----you are early in the process what worries me is the long haul. Do some serious questioning about potential after radiation therapy. "if an implant falls into the axilla , will it plus with radiation therapy predispose you to lymphedema".  Question stats about LE and radiation, Especially on the right versus left. I believe the whole medical complex because it is so fractured with each having a small piece to work with doesn't look at the overall outcome. Very nice by law recon is required to be covered. But how many people women and men end up with LE based on all the different things that are done to us. If it were the law that, we be made aware of these things would we make different choices. How many women are made aware of the fact that flying can cause LE. It's been published since late 1996. Even with one node removal. How many have breast LE, how many experienced a seroma post -op then experienced LE. There are way too many things we are not told. This whole discussion board is full of threads that question why this ---why that. I have left breast LE and axillary LE and upper arm Le. Only b/c of my twins LE was I proactive at the first signs of it did I counteract it. For me I'm LUCKY -----if I don't stress the side it maintains. If I stress it by to much work of the arm then I have to behave for days.--------and wear special bras, and change activity.----like no activity.The only positive is it's a great excuse not to do housework. BUT BUT, if I run the vacuum with the right arm, explain to me why the left side swells. As a widow with no family close in a hurricane region how can I not be able to take care of stuff. I only had 3 lymph nodes removed. Is the too big of foobs a factor?

 I didn't have radiation. What is the value of radiation? what does it add to longevity? What is the incidence of LE with radiation? What is the difference of LE on the right versus left with LE.

LE is a question you have time to get all the answers, before you have radiation.

BC can cause all kinds of long term problems. What pisses me off is the medical establishment does not appear to be addressing these problems. It's cut and dice and irradiate. If  women were given a better choice to avoid radiation to avoid long term consequences of radiation would they do it.

 We trust our docs to advice------they go by most recent info.  By the time info is published it's almost 2 years old. >>>research>>>submission of data>>> peer review>>publication>> application in practice. What was then accepted practice, may become the antithesis(opposite) of accepted practice. For example, when sentinel lymph node research was being done in the 90's it was first meant to be avoidance of resecting to many lymph nodes. I researched this heavily when my twin had BC in 96. She missed this very important publishing and research by 6 mos. They took 34 lymph nodes when one was positive.She developed severe LE arm and truncal edema

 Didn't revisit the research until it came my time--------somewhere between the original goal of SNL node bx , it was translated into full lymph node dissection if one node was positive.

Now there is research that no longer supports this approach. What does that mean to those that had full LND. ??????

LE is nothing to be messed with, you may have a cure for the cancer and spend the rest of you days preventing the complications that LE can cause. Sure I'm making people concerned  right now, But you should be. We are guinea pigs for a medical/ government complex that will not throw enough funding at the research to fix the problem. B/C LE is not recognized as being a problem---------AS BC is basically a female problem so is LE. They have Pink every thing and Marathons etc. and a month dedicated to us. Well frigging nice. AND now there's discussion to not call Ductal carcinoma insitu ---not cancer. Duh do that to a part of the male parts and it wouldn't happen----------flippen tired of the men getting better recognition for their parts then our parts.----------Why are we expendable and all the complications we experience that are serious----not addressed. Being bald--- wigs are payed for, and for some women this is devastating, BUT LE is a much greater problem with life long serious consequences. Okay Rant is done for the moment.

LuvLulu07

Newbie here, but interested in this thread.

Well said Sas - LE is huge and it's amazing how it's not recognized by surgeons and the medical profession in general.   My "wonderful" BS said that there was a 3% chance that I would experience LE in my lifetime.  Where do these numbers come from?  I'm interested enough to start some kind of a campaign to educate BC doctors about LE.  From what I've read somewhere on these threads - doctors receive about 15 minutes or less on the lymphatic system in medical school!!  

I join you in your Rant! 

Anonymous

Sas- Your post(s) will hopefully make others aware that they alone are responsible for their own health/bodies.  You, and I, have learned that you can't just trust your doctors to always do what is best for us.  So much information is not voluntarily given to us.  We're supposed to ask questions but how many of us know what questions to ask.  Especially in the beginning when the word "cancer" is ricocheting around our heads?  I feel so often doctors have this attitude like they're saying "Now don't you worry your pretty little head about that."  It has infuriated me at times as I'm sure it has you.  (I'm guessing you want to strangle your PS with your DDDD size bra at this point.)  I know you don't have legal recourse with your PS but what about reporting him to the AMA?  If nothing else- online reviews have been great for venting for me.  (BTW, I think rather than increase their volume we decrease their length elsewhere- lol!)

Layla2525

Did anyone have a surgery that went ok with the implants?  My BS doesnt seem to like the idea and if you do get implants...she thinks they should be delayed but the PS of course seems ok with immediate recon. I am going for that...but wonder about infection, tightness, pain, etc....is this going to be a never ending saga?

Anonymous

Layla- When you say delayed are you referring to delaying any kind of reconstruction for months or years.  Or are you referring to using tissue expanders and having the implants placed several months later?  If you're talking about the first I don't know if delaying reconstruction would make any difference unless you've had radiation and your skin is damaged.  Then it's sometimes a good idea to give your skin a chance to recover.  Otherwise, I think if you're going to have issues with the implants you would have them whether or not you delayed.  The majority of women who do implants do not have major issues and are very happy with their recon.  But it can happen and some end up having to do a revision or change to a different method of recon.  There's really no way of knowing, though, if that's going to happen to you.  Keep in mind that those that are happy afterwards usually don't hang around and continue to post so you will read more posts about problems than happy endings.  

If you were talking about having tissue expanders rather than having the implants placed at the time of your mastectomy I would have to agree with your BS if you are having a nipple sparing mastectomy (NSM).  Having immediate reconstruction puts a lot of pressure on your nipples which are extremely fragile after MX.  I've seen a much higher failure rate in NSM with those that have had immediate recon vs. tissue expanders to implants.   

sas-schatzi

Layla, time to stretch is important. Even a few weeks can change your comfort level for months. Kate's got some great advice in her post.

Ewarner50

My implants are 700cc and the left side is now a level 3 encapsulated contracture. Not fun



Just getting back home from visiting Miami breast center. I will be proceeding with removingy plants and having a fat transfer preformed



I'm ready to not be in pain anymore

dancetrancer

Welcome Eileen!  Best wishes for you with your next surgery.  I don't know if you are aware of it, but there is another board where those of us who have had fat grafting done share our entire stories, tips, and tricks.  Feel free to come check it out, you will find the information very helpful.  www.fatgraftpatients.com 

sas-schatzi

Dancetrancer, please tell, me you watch this thread, I'm in the phase of moving on--------I don't want to feel guilty?

EileenKaye1

dancetrancer--thanks for the best wishes--I will check out the website.  Eileen