Still Uncomfortable with Implants

Thanks for posting Kate it is good to know that I am not as crazy as I thought so many times I was going to loose it and have to say my mental health and self esteem is at an all  time low.

I do not know what the new PS will say or what he will even be able to do.

I have moments where I don't feel so bad and then if I do any upper body work or exercise the pain and tightness starts all over again and then I know why I feel the way I do about the implant reconstruction. Some ladies have even said that the back pain has improved when they are finally gone. I hope so as I have been in misery. I have tried chiropractor, Physio and massage they only provided temporary relief. Sometimes I feel so bad about complaining and feel at the mercy of the Dr's.who are supposed to be thinking of our well being. I am sure that sometimes my Dr is at a lose to know what to do next he sent me to a pain specialist and all the Tylenol and ibuprofen they prescribed was unreal and then they prescribed stool softeners and another types of laxative to deal with the bowel issues.

I am very apprehensive about my appointment on the 26.

laura

laura.

Hi Kate,

Sorry to hear that you are also having problems with your implants. I hope all goes well with Dr. Khouri in Miame. Are you able to get insurance to cover the cost.?

 I am hoping that the Plastic surgeon will be more informative than my last one. My previous  reconstruction  PS did not even mention to me anything about what the procedure involved or about the results I could expect as far as the reconstruction went.. I have to admit I was totally stunned at the time, They spent more time telling me how wonderful the Gummy implants were..

Anyhow there is no going back. It feels like revisiting the BC experience. This may sound weird but the decision to have the implants removed seems worse than the decision to have Bilateral Mastectomies.. My Dr's were all gungho to do the surgery. When I complained about all the pain it was like It was my problem not theirs. I was also told that I should be happy that I had the opportunity to have reconstruction done in the first place.

I know that there are many ladies here that have had really good experiences,and great Dr's..it just isn't the case for all of us.

I wish you all the best!

Laura.  

My sentiment exactly, I am so relieved to find these posts and know I am not crazy and that all women don't absolutely love their implants, I just thought something was seriously wrong with me and I was being ungrateful.  I had a BMX in August 2009, reconstruction with silicone implants in April 2010, the right implant bottomed out and I had a lot of discomfort which my PS said he didn't really know what the problem was, perhaps the nerves trying to reconnect.  I went to a different (supposedly world renowned) PS and had revision reconstruction in December 2010.  He used Alloderm and said this would lift it, it didn't.  I am currently scheduled for another revision in June with the same PS.  I searched high and low to try and find a list of the top PS in the US.  I finally got a referral the other day and I have a consult in May.  You are absolutely right, I don't think anyone understands and my PS told me that he thought I got a beautiful outcome and that no woman is perfectly symmetrical.  While that may be true, take one look at me and my foobs are not just slightly asymmetrical.  I remember the day I took off the surgical bra after my reconstruction, I broke into tears, it was not what I expected at all.  I wish I would have gone with using my own tissue, but people would say "why would you want to go through such a long surgery and recovery, when implants are so easy".  Well go through what we ladies have gone through and then say that to me.

 Thank you, thank you all so much for posting your stories and letting me know I am not alone.  I feel like I should move on and be able to forget about this whole ordeal, but I don't know about any of you, but it is still the first thing I think of in the morning and the last thing I think of before bed.  I hope there is a day when I no longer even think about bc or my foobs.  

 Best wishes to you all.

Wow, it seems there are a lot more of us out there than we thought.  I wonder if BCO took a poll how many women would say they are happy with their reconstruction.  Apparently a lot less than I thought.  The part that ticks me off is how many of us weren't truly informed on what was going to be done to our bodies.  And for most of us we're still reeling from our DX and don't know enough about it to know what to ask.  I think so many PS's think recon with implants is no different than augmentation but they are worlds apart.

lauralu- I can really relate to your PS's cavalier attitude towards your pain.  When I saw my PS for my follow up I expressed my concerns about the pain and rippling I was experiencing.  When she told me there was nothing she could do for me I started crying.  She told me, "I should show you some photos of other women who have been horribly disfigured and you'll feel so much better about your results".  WTH?  That's like telling someone who's lost one leg not to complain because they can show you photos of someone who's had both legs amputated.  I was so mad I never went back even though I was scheduled for another follow up.  From all these stories, from you, pinkie, clfinch and ilovehorses2, it seems our PS's have way too much ego and not enough empathy.

As for your question about Dr. Khouri.  His procedures are covered by insurance unless he recommend you use the BRAVA system first.  (The BRAVA system creates the space for the fat grafting.  Since I'm having implants taken out I'm hoping I don't need to do that.)  If anyone wants to check into this go to miamibreastcenter.,com.  He is creating entire breasts using only fat grafting- no implants!  He is in Miami but he has also been training other surgeons in this procedure all over the world.  I think eventually this will be very mainstream as it is a lot less disfiguring.  A member had it done last year and she said she is actually getting some return of sensation which is very exciting.  

pinkie- I think you are very courageous.  As much as I want these d*** things out I'm just not ready to walk around without breasts.  I guess I've been brain washed by society, and all those Victoria Secret catalogs that flood my mailbox, to give them up.   I can relate to your anger and frustration with all we have had to go through.  So many people think that once you have your MX you're done.  All the support you get then seems to disappear now when we probably need it the most.  Hope  you're feeling better soon.  ((((hugs))))

ilovehorses2,

When you way you have the 410s, does that mean you have the gummies? 

It is horrible that we are experiencing all these problems with our Breast reconstructions. It does  show others who are looking at reconstruction to be very aware and do serious research..

Dealing with BC is such a major stress!!!

.Believe me my husband has had to listen to me whine for four long years. Many times he has gone to our Dr and told him that something has to be done. I finally told the Dr. I just want these things out! There are so many things that have happened with my body since then that just do not make sense. The tissue breakdown under my arms is so obviously related to the reconstruction.I kept on thinking it was something I did wrong..

. I now know how uninformed I was. There was not an awful lot of info out there I tried to get info from the Cancer Centre here and all they had was a few books.

I even ordered a book myself and there was not all that much information. I wish I had known about Breast Cancer.Org back when I was going through the process. It may have given me a better idea of what to expect.

Thanks for all the posts!! Venting is good we all need an outlet for our frustations

.

.

I do believe there is an informed consent form. I found this out later by cruising the Internet. I don't remember if it had too many details about breast reconstruction. I think we all know that there are no guarantees when it comes to any kind of surgery but I think the main thing is that tissue expanders can cause irrepairable damage. I think that was mostly the problem in my case. Also when I asked when I could return to work he said he didn't know. It gave me the uneasy feeling that he did not have as much experience as I had hoped. I read a lot about what you could and could not do  here and on other surgery sites after the fact to little to late. I probaly made every mistake in the book as far as after care goes.

digger, I'm with you my DH has been so good to me through all this. I know he worries when he see me in pain. This is the only place where I feel people really understand what Recon puts your body through. Some times I think my PS is treating me like it is all in my head.

Di 

Kate33

I know what you mean.  I thought the same things about implants.  They can't be bad, lots of ladies get them.  But I think Hollywood has glamorized it.  Reconstruction is a whole different thing.  I too feel like I have these foreign objects stuffed in me.  I want my body back, even if it is boobless.  I'm deciding to have the implants out. I'm planning on wearing prosthetics.  At least that is my thoughts on it today.  :-)

Hi to everyone--Rburke--thank you so much for starting this thread.  I feel relieved to see I'm not along, but sorry that everyone who's posting is suffering.

I was diagnosed Oct 2009 and had a left mastectomy last April and my implant swap in August

I hate the prospect of undergoing another surgery, particularly without any guarantee that it will improve my symptoms.  I am worried that the damage from scar tissue, etc, may be permanent. 

I have spoken to the plastic surgeon about my symptoms, but at the time, I wasn't ready to discuss alternatives.  Today, I am seeing my oncology surgeon and will pick his brain about this--has he had other patients either recover from these symptoms or seek out other surgeries.

One thing I am curious about is placement of the implant in front of the muscle.  One of the surgeons I consulted with was using a Becker implant that was in clinical trials--it is an expandable implant so only one surgery (too late for that!), but it does sit in front of the muscle.  I am thinking that is might be a conservative next step.  I do know one call who had a conventional silicone implant placed above the muscle, but she developed capsular contracture early on.

Kate--I believe you see Dr. Khouri tomorrow--I'll be curious how that goes, and I'll look at his website.  

Thank you so much everyone, for sharing your experience. 

I'm new to this thread, but I've posted many times on other fat graft topics.  It's so discouraging to hear that so many of us are unhappy with our implants (however, at least I can rest assured that I wasn't the "odd" one!)

I had Dr. Khouri "redo" everything.  I had 500cc implants - he exchanged them for 300 cc and then I had 300cc of fat grafting.  I had a total of 3 fat grafting sessions, but even after the 1st surgery, I was more than pleased!  The last session was more of a "tweaking" - but I am so happy with everything.  My breasts look and feel normal.  They feel like ME.  My "before and after" photos are posted under "fat grafting recon" or you can search them by my member name:  Leeinfl

I'm looking forward to meeting Kate tomorrow in Key Biscayne.  I have a follow up appointment (I'm done!) and hope to meet her as well as another bc.org member.

Dear all

I'm usually a lurker with major pain issues that have led me to despair. I want to post today to let you know that things have improved dramatically over the last week. I'm not quite sure what has happened but I've gone from having terrible crushing pain (felt like the implant was trying to strangle me or jump out of my chest) to more of a tight discomfort feeling. I have also had a lot of problems with my arm and it has also improved - it is now a tight nagging feeling, not pain.

I admit I'm on a ton of medication but it hasn't worked this well before. I've always been very good about doing my stretching and exercise so that can't have been the reason for improvement.

The two things that might have helped are - kenesio tape across my back to move lymph fluid from my affected side to the other side and I've recently started citalopram (celexa I think in the US). My doctor has been saying for a while that citalopram can help some people with pain. I had been very reluctant to take more medication but it may have worked. I've done the kenesio tape lots of times before but this time it may have been a bit firmer.

Who knows what has helped and how long it will continue. I thought I would post this to offer a ray of hope. No, it is not perfect, but discomfort is way better than pain. This is liveable. Hope this helps someone.

Dear Lynkoura--thanks for sharing such a positive story.  I will keep the celexa in mind and ask my doctor.  Can you tell us what other medications you are on?  are they pain meds or neurontin?  What is kenesia tape?

Erica--I will look into truncal lymphedema too--Do you know if it's in direct proportion to the number of lymph nodes removed?

I had an appt with my oncology surgeon yesterday--I requested it specifically to talk about these issues.  He was very sympathetic, and spent an hour listening and offering suggestions.  He is thinking I may be OVERDOING it with the exercises to improve strength and flexibility--I have been pushing past the point of pain--which I thought we were supposed to do to restore full range of motion.  But he says I could actually be aggravating the nerve around the implant and into my back.  But he did observe weakness on my left side, and that the left shoulder blade is not resting flap against my back--this is where I have a lot of pain.  He is referring me to an orthopedist who specializes in 'sports medicine'.  In the meantime, he is suggesting I back off on anything that hurts that shoulder or that puts too much stress on the pectoral muscle.

Dear Leinfl--I will look up your photo and check out the website re fat grafting, but I'm curious--Is your implant still under your muscle?  and is the fat grafting over the muscle?  Thanks

All the best to everyone.  Keep those posts coming, so we can share approaches, and let's hope, solutions. 

Barbara

Thanks for the links. Yes, I do have truncal lymphedema and I had read the material on that site before. It isn't usually visibly obvious but I'm pretty sure that is what it is. I think the swelling probably presses on nerves. Unfortunately I live in a small area and have access to only one person. She has taught me lymphatic drainage which I do, but it doesn't seem to help much.  I have repeatedly asked about compression garments for my chest and just been told to wear a supportive sports bra. I have looked at the garments on the web but am reluctant to risk ordering something that expensive without trying it on. I have thought about buying a regular sports compression top. I also use a compression sleeve on my arm for pain. As this is an implant threat I wont go onto all the things I've done for the arm pain. However, I think the implant also aggravates my nerves somehow.

joinsf

I will private message you about the medications I've tried.

Lee--what a great photo.  I love hearing about that technique.   I'm glad you're so happy, and it's great to know it's out there.