Considering removing my TE's

Melgirl

I'm 3 weeks postop today, BMX. My decision to try TE's was a quick one when my PS called two days before my surgery to say he was available. I now have buyers remorse. I was a DD prior to BMX. PS was excited that he was able to fill me some in surgery. (I'm not sure how much but I have some plumpness.) I know it is still early but I am still in constant pain. I feel like there are clamps around my "boobs". I have intermittent burning over all my chest. Any bra I wear starts to feel like it is cutting me in half. It feels like the TE's are moving around under the muscle so much that sometimes I will get a bad pain so I will push on that part of my boob and cause it to move for a moment.

I'm seriously considering removing these things. I start chemo March 4 for 20 weeks. I can't take this pain for 20 weeks just to see if it improves with exchange. I see my PS on Tuesday. Do I even have time to have them removed now before chemo?? This is horrible.

dtad

Hi MelGirl. I'm sorry you are dealing with this. IMO the symptoms you are having could be related to the BMX rather than the TEs. The feeling of clamps being on your boobs is definitely from the surgery. I'm 9 months out from a BMX and I still have that feeling. Three weeks post op is way too soon to try to determine the source of the pain. However I'm not there. Trust your gut and see your PS. Good luck and keep us posted....

Help2c

I know exactly how you are feeling right now because I felt like that too, at first! I remember when I was 2 weeks post op I wanted to rip the TEs off and I am usually able to handle pain!! That being said, I will tell you it gets much better!! I always felt the expanders and I hated the iron bra feeling, but the actual pain went away. I just kept telling myself that it was temporary and it helped me deal with the discomfort. I hope your pain starts improving soon!

Artista928

I almost lost my TEs due to infection. One thing PS told me is if they are removed, he may not be able to reconstruct me- that I may have to remain flat. The TEs are there to keep your skin and pecs stretched while you go through treatment otherwise your skin gets tight. Especially if you are doing rads as well as that causes it to shrink. So I'd talk to your PS like you are going to do and see if there's meds or something you can do to help alleviate this. It's not comfy. I'm 6.5 mo out from sx and at first it was stifling and felt there were edges digging in my skin. But as time went on it settled and while it feels like iron boobs still especially since I'm a full fill right now, it's doable. Hope you find relief.

ETA: You may have to push out your chemo date if you decide to have them removed. You have to be fully recovered from any sx with no issues like possible infection. I had to push my date out because I got infected probably from having issues with my drains. You had sx 3 weeks ago and my MO said the ideal time for chemo effectiveness is up to 3 months out. So again, talk to your PS and your onc and best wishes.

Melgirl

Thanks everyone. I definitely don't want to wait for my chemo to start. I just don't know how I'm going to handle the pain. PS had given me Soma for muscle spasms but it doesn't do a lot. I'm going to acupuncture twice a week. I had no idea the pain would be this bad, but it would not have changed my decision about BMX either.

Artista928

I could be mistaken but Molly50 I believe was asking suggestions on how to deal with the TEs several months ago. She's still around if you want to pm her. She's very nice.

Melgirl

Thx! I'll look her up!

Leslie13

It gets easier. The first month is the worst. You've had major surgery. I'm 4 months out and way better now. They still feel like foreign objects, but I think time helps you forget about them. Distraction is the best pain reliever, but you may want to share how you're feeling with your Dr. and see if they can give you stronger pain meds. Dr's will give you the minimum narcotics because of all the media talk about painkiller abuse, but you have a legit reason. Good luck, and don't make that decision for a few months at least. It will get better

Melgirl

Thanks Leslie

Jenwith4kids

It definitely gets better. I promise

Katemom

I had my double mastectomy on December 4th and I have TE. I also HATE them. However, it does get better. I kept taking pain medications for about 5 -6 weeks after the surgery. No a lot but usually one in the am and always one in the pm since sleep was so hard to come by. This last time around was better and I am pretty much just on Advil. I am also almost done - only a few more injections and I should be good to go. They are uncomfortable but they are not forever. I tell myself that this is God's way to showing me more compassion for those who suffer from chronic pain. I am not sure how this new compassion is suppose to play out but at least it gives me a reason (other than new boobs) for why I have to have these things. Hang in there. It will get better and you are young. Think how well you will rock a bikini top in the near future. Hugs (gentle ones b/c we are both in the "ouch" zone still.)

Melgirl

Thanks Katemom. I'm trying to keep telling myself I am not alone in this pain and it will get better. I can't take ibuprofen because I'm allergic to NSAID's. I take Tylenol once or twice a day though. Gentle hug back!

Tamiwin

Forgive me, this is my first post to one of these message boards but after reading your posts I had to touch base with you.

I am 5 weeks post BMX, 4 weeks post TE placement. PS wanted to wait a few days between surgeries to see how my thin skin would heal, obviously it seemed fine and he commenced to butterfly my pec muscles and insert these rocks.

I felt great after the BMX, horrible pain after the TE placement. I felt like someone was trying to get out of my chest by tearing my rib cage apart starting at my sternum. The first fill was painful for days but each fill has gotten better with less pain each time.

I'm not pain free, there are still moments of red hot fire in very specific spots. My range of motion is limited, it sucks not being able to sleep on my stomach and I'm self conscious because they are not symmetrical. I'm upset because I just recently found out the swap won't happen until my chemo has been done for 3 months. (I'm scheduled to start this week, at least a 5 month duration.)

I've doubted my choice of reconstruction pretty much from day one due to the pain. The emotional rollercoaster we're all riding every day certainly doesn't help either. I've come to realize that every day is different, physically it has gotten better, emotionally everything is still hard and I'm sure this pattern will continue. For now, I've decided to live with the choices I've made, I'm sure next week I'll be ok with my chest rocks...maybe we'll come to some kind of understanding and I'll figure out how sleep on my belly

Chin up...and one day at a time.

Blessings2011

Aw, Melgirl, I'm sorry.

I cried every day for a month after I got home from my BMX and expander insertion. The pain was unbearable. It felt like I had a red-hot, rusty bear trap clamped onto my chest, and I could barely breathe. I DEMANDED that DH take me back to the hospital to have them removed, or else I swore I would do it myself.

Then I started getting replies from the incredible women on this board. I know I never got my pain under control in the hospital, because I never used the PCA - which contained morphine. But when I was sent home, the PS gave me Norco and Valium.

I had heard so many stories of women who'd had mastectomies and ran a marathon the next day, taking only a Tylenol (well, it seemed that way to me), that I didn't want to be a big baby, so I didn't take my pain meds very regularly.

What my BCO sisters finally convinced me was that I had gotten pain meds for a reason, and that I needed to actually TAKE them for them to work. I started taking both the Norco and the Valium around the clock (DH set his alarm to bring me my 4 a.m. dose) and eventually that broke the pain cycle.

A body that is in pain is stressed, and a body that is stressed will not heal. Right now you need to heal.

Please tell your doc that the Soma isn't working and ask if there is something else he can prescribe. Also let him know how much pain you are in.

If there are no other issues with your TEs, then what you are experiencing is temporary, I promise.

Sending you gentle hugs....

Melgirl

OMG Tamiwin, I feel the exact same way as you. These rocks on my chest are like aliens trying to get out!! I'm glad you are feeling a little better.

Blessings you described exactly how I feel. It seems like I'm a big baby and so many people around me are doing fine and ready to Zumba or whatnot.

I see the PS this morning at 1000. I'm going to have a frank discussion about pain, meds, and filling vs deflating. I know I don't have time to remove these horrid things before chemo but I'm wondering if I can deflate them and have them removed later? Do they hurt if they are flat inside of you? Or maybe I will fill this one time and see how it goes?? The clock is ticking and I still don't know what to do! Ugh!

Molly50

Mel girl, do discuss your unhappiness with your PS but do try the fills. Don't let him do big fills the first time so you can see how you handle it. Expect some discomfort as your pec muscle expands. You may want to take Tylenol prior to your appointment. I think I told you that I felt better as I got fills because the spasms stopped and the TE stopped moving around. I hope things start to get better for you soon.

Artista928

They started me with 50 my first fill. They saw I tolerated well and the rest was 100. If you are going to have rads you just want to be done with the fills before you start because skin tightens with rads. So you haven't started chemo yet and the regimine you are on for chemo is several weeks, plus if you are doing rads, there is 3-4 weeks break before it----so there is time to go slow. I also know someone who had to take narcotics while doing fills for a few days after. Please explore everything before you decide to get them out. You've gotten this far, try to keep going.

Blessings2011

Melgirl - part of the reason your TEs hurt so much is the way they are constructed. You know what a breast implant looks like (saline or silicone): soft and squishy all over.

The TEs, unfortunately, have a hard plastic back that rests on top of the tissues just in front of your rib cage. It's made that way so that when you are in the process of getting fills, all the saline pushes FORWARD, creating the pocket where your permanent implant will go.

How many ccs of saline did you get during your BMX? Everyone usually gets "a little something" but some PSs seem to be in a hurry, and trying to fill a new TE too quickly can be VERY painful, especially immediately right after surgery.

For the life of me, I can't remember how much I got in the OR... I think it was 120 or 180. We waited a month for my sutures to heal, then we started at 50ccs every two weeks, then as much as I could stand. Being plus-sized, with very large pendulous breasts pre-BC, I had plenty of skin. If I did have any pain after fills, what usually helped was a nice hot shower on my back before bed, followed by a back massage from DH.

So in answer to your question, would it still hurt if you had them deflated?.... the answer is MAYBE.

On the other hand, every time you get a fill, that moves the TE slightly in your chest cavity. In many women, it's enough to move them off of irritated nerve endings, and they find definite relief from pain as the fills progress.

Our motto here is "Low and slow is the way to go." In other words, too much saline in one fill, or too often, can also set off painful muscle spasms in the back and shoulder blades. (Remember those hot showers before bedtime...)

I was fortunate to not have any pain issues with my fills once my post-surgical pain resolved. I also didn't have chemo or radiation, so I don't know how that plays into delaying or speeding up fills.

Just remember: YOU are in charge. This is not a race. You want to get the treatment you need (chemo), and you want to heal and preserve your fragile skin so that when you get your permanent implants, there are no problems.

You can do this!

Melgirl

Thanks Blessings. I can't remember for sure how much the PS put in either, but I am close to a B cup. I have some extra skin and still some extra swelling. My PS kept assuring me, saying I am only 3.5 weeks postop. He felt I was being somewhat unrealistic. He gave me the impression I was asking for narcotics which I was not. I agreed to try valium again, he feels anxiety is part of my problem....maybe it is. He talked about how the feeling of TE's is just different and pressure and usually not pain. I assured him that I have moments where I only feel pressure and something foreign but I know too the majority of what I feel is pain. He did say he would do whatever I want to do. He wasn't ready to do a fill yesterday.

I am giving the valium a try again. As well as trying to readjust my thinking that this will pass. I'm also continuing my acupuncture.

lxcarr

Ive had a bilateral Masectomy July 2015 and had extenders placed. They filled the extenders while in surgery to 240cc. I spoke up and yes very Uncomfortable! I needed chemo and radiation. So they had to empty the extenders. My left side always stayed in constant pain. It was the cancer side. The plastic surgeon claimed he doesn't know why I hurt so much. Sent me to a pain doctor. After 7 months and no improvement the plastic surgeon is removing both extenders! I asked him why he couldn't replace the left that is causing me such pain He said they both need to come out I think he just wants to rid me cause he can't help and will never be able to have reconstructio

Melgirl

Wow he's really not giving you any explanation. If you want to try again I think you should get another opinion.

It really pissed me off when PS's act like your being whiny about the pain. They don't know what my pain is like.

I recently went in to have my port placed. I had to shimmy over to the OR table and I ended up in terrible pain. The nurse recognized it and medicated me right away. I told her I hated my expanders and I would like to put them in my PS's balls and see what his pain score was! Of course that became the joke of the hour! Since I'm a nurse I knew they would appreciate it!

Katemom

Hi Melgirl, First of all, thought I would share with you a quote I found on a different site about the TEs "There is some discomfort with the expansion process because it is stretching the chest muscle, but most women find it is not very uncomfortable." Seriously! Change the last word to "comfortable" or re-write it as "find it to be very uncomfortable" but to say that women find it "not uncomfortable" aka "comfortable" is laughable - at least for me and you!

I am now approaching 13 weeks post surgery and I still have discomfort from the TEs but it is not the searing, bring me to tears, feeling that I had in the beginning. They are now fully expanded and my final surgery is scheduled for end of May, early June. You can bet that I have that circled large on my calendar. These things hurt. Sometimes I still take a Norco at night if the pain is bad. I do find that if I am running around trying to do everything under the sun, that the pain is worse. I think we have to give ourselves the chance to heal and rest but I know that is hard. In the beginning, I had panic attacks. Kept thinking what if there is some horrible event (earthquake, etc) and the city is destroyed. What will happen to me? (Probably should not watch The Walking Dead). Kept thinking I would have to live with these things FOREVER. Well, it is not going to be forever - not for me and not for you. The pain gets less intense. These days I feel more pressure than pain - like a bad underwire bra that I cannot loosen. Still, it is better than before. It will get better. You will feel better. Hang in there.

- Kat

Melgirl

LOL yes maybe the Walking Dead should be put on hold a little while! Yes that post you found is total BS! I thought this would be the easiest recon for me and my family, but now I don't know. I sure hope your exchange comes quickly and you are pain free immediately. You deserve it!!

melissa

farmerlucy

TE's in PS privates. Melgirl - you crack me up! Still laughing at the visual in my head.

Melgirl

The female nurse announced it to all the males in the room and they very seriously started talking about how TE's in the ball's were the new rage among men! I think the OR teams secretly love conscious sedation and the wacky things that come out of patient's mouths!

jennbtwins

I'm scared to death. I have te's in and have gone through rads. I'm afraid that the implants won't work based on everything I've been reading. Has anyone had success with implants after rads?

jennbtwins

I'm scared to death. I have te's in and have gone through rads. I'm afraid that the implants won't work based on everything I've been reading. Has anyone had success with implants after rads?

Melgirl

My PS said it's an individual thing on how your skin does with the rads. Try posting on the main radiation thread. Good luck to you!

Melgirl

Now that I've started chemo I hate my TE's even more. Has anyone ever had their TE's deflated until after chemo then just taken them out??

Artista928

It's not recommended you mess with anything during chemo. Your immune system is already compromised and you may increase your risk of infection by having needles going in you to deflate. And it may not make a diff in how you feel. If you are also getting radiation after chemo, if you take the TEs out your ps may not be able to reconstruct you. That was a risk posed to me when there was a chance the infection I had would cause my TEs to be taken out. Recon after rads is not that easy and not possible for some. Really think about it before you make a move. Many have been in much discomfort and found ways to cope through it. Hope you do too.

Melgirl

Thanks for your comment. My MO said she allows fills during chemo.So I'm thinking about having some removed to see if it makes a difference. If I decide to remove them at some point I'm thinking I will go flat.