Advice Needed for Pain from Tissue Expanders

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Anonymous
Anonymous Member Posts: 1,376
edited October 2020 in Breast Reconstruction
Advice Needed for Pain from Tissue Expanders

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  • hog_co-pilot
    hog_co-pilot Member Posts: 40
    edited October 2020

    Hi, everyone!

    I was diagnosed with breast cancer in April 2020, After several rounds of chemo, I had an bilateral mastectomy with reconstruction (tissue expanders) on September 21. (No radiation is needed.) I’m curious about how long I can expect to be in pain from the surgery and tissue expanders. I’m beginning my 3rd week of recovery, and I still can’t go a full day without needing 1-2 pain pills. While the pain pills are effective, I don’t like how they make me feel, so I’m anxious to get to the point where I’m only taking ibuprofen. The worst pain that I feel is in the middle of my chest. Each breast has a defined hump (for lack of a better word) where it seems that the corner of the TE Is located. It looks like the TEs are about to break through the skin

    My questions are as follows:

    1. How long will it take after a BMX and reconstruction with TEs until I won’t need to take pain meds?

    2. Has anyone else had a wrinkle or corner of a TE that pokes up into hump and therefore causes discomfort? If so, how did you make the pain go away?

    3. What can I expect from a fill?

    Looking for advice, please!

  • VegGal
    VegGal Member Posts: 507
    edited October 2020

    Sounds like you are doing great. Your me use is nothing to be concerned with. I turned the corner at around the 3 week mark, and was completely off pain meds around 4 weeks.

    I have heard that sometimes a fill will relieve discomfort. The fill will help take care of the sharp edges. I was filled to 450 during the BMX, so never had an in office fill.

    Hang in there! It will get better soon!

  • goldie33
    goldie33 Member Posts: 4
    edited October 2020

    I am also on week 3 of recovery from bilateral mastectomy with expanders. I can’t speak to number one, since I don’t have a good reaction to prescription pain killers so I chose to just tough it out with Tylenol and Advil. But, I did have the exact same issue you describe in number two, and I can tell you that what solved it for me was getting the first fill! For some reason, the poking corner took on a new shape with the fill and I felt immediate relief. The top edge of the the expanders were also causing discomfort and digging in, and the fill remedied that as well. I really hope you have the same experience. I can sympathize with you So much

  • hog_co-pilot
    hog_co-pilot Member Posts: 40
    edited October 2020

    VegGal and goldie33, thank you so much for your responses! I cannot tell you how much relief I feel being able to communicate and get advice from ladies who are going through the same thing!

    How soon after surgery did you get your first fill? How long after a fill did you experience pain? Was the level of pain similar to the pain you felt right after surgery or was it not that drastic?

  • goldie33
    goldie33 Member Posts: 4
    edited October 2020

    My first fill was last Friday, exactly 2 weeks from my surgery date. They put what I think is a lot in...100cc. I am small framed so it was a significant amount on me at least. I was very nervous to get the fill since my empty expanders were so painfully digging in. During the fill, I felt pressure but no pain. I couldn’t even feel the needle go in, my skin is still numb there.And then, afterwards, I felt no additional pain from the fill, just so much better from those corners and edges being “lifted”. I also feel psychologically so much better with the expanders filled. I still feel some totally bearable discomfort and heaviness in my chest especially at the end of the day when I’ve done a bunch of activity, and the pain I’ve been experiencing from the sentinel node biopsy is still there, but the expander pain is so improved that at times I can’t even feel them at all, especially when I’m not moving around. I hope this happens for you too!

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited October 2020

    Ladies - you can control how much they put in. If you are in pain - tell them to dial back on the amount next time. If you can't wait that long, they can remove some of the saline that's already in there.

    I only allowed my PS to fill 1/2 of what he wanted every time. It took longer, but I didn't have as much pain.

    And yes - the fills will eventually take care of the folds & wrinkles & sharp edges.

  • Mangosan99
    Mangosan99 Member Posts: 60
    edited October 2020

    hog/goldie, I'm 3 weeks out as well and was just freaking out a little bit last night about my TE pulling at the top edge. Not super painful but weird looking. It seems like my swelling is down so the weirdness shows through! My pain is down but that may be b/c my surgeon put 200cc equivalent of air in my TE's at surgery? I go today to finally get my drains out (!) and my first saline fill so we'll see.

    I invite you to join us in the Sept surgery group where we are all at about the same place and share updates. There are just a few of us but many have TEs so I expect we'll be in this together for a while.

    https://community.breastcancer.org/forum/91/topics...


  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited October 2020

    I had to take pain meds for the first 3 weeks and then at night to sleep for another week. My PS filled the TEs 50 ccs during surgery and then another 50-100 each week starting a week after surgery. Sometimes a fill would make the pain worse, sometimes not, but I was done with fills very quickly that way. One thing that helped a lot with the pain was regular massages by my LANA certified physical therapist. She was wonderful.

  • marie914
    marie914 Member Posts: 165
    edited October 2020

    Hello,

    I had my left mastectomy and expander put in 9/14 with 40 cc of saline and my first fill was 9/30 with 100 cc of saline. I have another fill schedule for 10/9. My expander is 600 cc capacity but they said they can fill it a bit more.

    The pain didn't get worse with the fill and if anything got a bit better. The underarm pain where the lymph nodes are is better. They cut under my breast and about halfway around - like by my underarm but not that high; I think because I am wide (and overweight). We talked about the biggest implant they have almost to replace my volume. I do feel still very hard in some places. It seems like my upper chest is more tender feeling now and that I might feel some of the hard edges you are talking about. I hope they get better with the next fill.

    I have been feeling better during the day (no pain meds since 9/20) and I was taking a muscle relaxer at night but I stopped that a few days ago. The overall feeling is one of tightness. I found stretching seems to help. When I sit in the same spot for long it gets tighter. My range of motion is almost where it was but not quite.

    My PS says that after they fill me to where we want to be, then she waits two months before the exchange surgery. Is that what you are hearing?

    I need my right breast lifted but I might not get it reduced since I hope to lose weight (and avoid hormones) and so the right breast will reduce on its own but the left breast with the implant will not.

  • LiveLoveLaugh2020
    LiveLoveLaugh2020 Member Posts: 322
    edited October 2020

    Hog - sorry that you are experiencing so much pain. I felt the same way when I had my expanders in. I had pain the entire time (four months), especially after fills. The fills themselves weren't so bad, just uncomfortable because of the sensitivity/numbness of your chest. I am very thin, and you could see every bulge and everything little thing sticking out. Finally got a little better right before exchange surgery. Everyone is different but I hope your pain/discomfort subsides soon. Hang in there!

  • Lorih555
    Lorih555 Member Posts: 18
    edited October 2020

    how do you feel now? Reading these posts makes me really not want to do recon. I’m such a worrier. I wish I wasn’t such a baby. It just seems too much for me to bear. And recon is all I cared about in the beginning. Ug

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited October 2020

    Lorih - as others have said, you can get small fills and the stretching doesn't hurt as much. Usually something like Tylanol is plenty. And once you have the exchange surgery - it's like a miracle - the pain is gone.

  • hog_co-pilot
    hog_co-pilot Member Posts: 40
    edited October 2020

    Update- 10/10

    Since my original post, I had an appt with my PS. I showed him the areas where the TE was seemingly about to protrude through the skin. He suggested that a fill would alleviate the issue, so he gave me 150 cc in each breast. I’m thankful to say that this definitely helped! I’m feeling less pain now. Specifically, I no longer feel like I’m wearing a barbed wire bra.

    The fill itself was a little uncomfortable. I could feel the needle going though the muscle into the TE, and then I felt pressure as the saline was injected. Other than the small pinch of the needle, getting a fill wasn’t too bad.

    I also talked with my PS about the pain I was still experiencing, and he prescribed some pain meds and a muscle relaxer. I get pain relief with 1/2 a pain pill every 4 hours and a muscle relaxer every 8 hours. Beginning on Monday, I’m going to try substituting every other 1/2 a pain pill with ibuprofen.

    My breasts still feel somewhat odd. I don’t have children, but I’ve heard other women say that their reconstructed breasts with TEs feel engorged like they did during breast feeding.

    In all, I’m definitely feel better than I did when I made the original post. I’m improving slowly but steadily. My PS had to remind me to be patient with my recovery and not compare it to someone else’s recovery timetable. I’m about to begin my 4th week of recovery, so that advice certainly makes sense.

  • Calcar
    Calcar Member Posts: 2
    edited October 2020

    hell!. I had tissue expanders with 250cc in each placed from the start- my reconstruction is in front of the pectoral muscle- so my experience might not be the same. This was 6/22. I took Tylenol nonstop for at least 4 weeks the pain. (I found Tylenol worked better for me then ibuprofen). I thought i would never not need the Tylenol- but eventually the pain went away for the most part.

    To this day it is still not comfortable and I still struggle with getting comfortable for sleep, and don’t sleep well at all. When I get up in the morning I am especially sore regardless of if I sleep with or without a bra.


    I was filled 2 times for a grand total of about 400cc and each time the bumpy edges went away a bit more - but now it is like 2 rocks sitting on my chest... The fills just made my skin feel tighter for a short period of time. Not a big deal compared to the constant discomfort.

    Exchange surgery is in 5 days so i am hoping that soon enough I will feel much more comfortable when these rocks are removed. And my PS will be doing some fat grafting to take care of some of the weird shaped edges i have now (hopefully).

    Hang in there... it was soon after 4 weeks that I was “feeling” much better- hope the same for you!

  • Amyb131
    Amyb131 Member Posts: 10
    edited October 2020

    Whew....I am so glad to read some of your posts about TE...I am just one week out from my bmx. I had 200cc’s injected during surgery...I honestly wasn’t expecting that much, but we never really discussed how much I would start with. I trust my PS....he’s known as the best breast man in my area. I know I am still in the early stages of recovery, but the tightness is something else...should be getting my drain tubes out Thursday, and I cannot wait! It helps so much to read what others are experiencing.

  • hog_co-pilot
    hog_co-pilot Member Posts: 40
    edited October 2020

    Calcar- Thank you so much for sharing your experience! I’ve been sleeping in a recliner, and I can definitely relate to the sleeplessness issue. I don’t think I’ll be able to sleep on my side for 6 months. I have heard from numerous women that once the implants are inserted and traded for TEs, they feel instant relief. Hopefully, this will happen for the both of us!

    Amyb131- I totally understand what you’re going through! Were your TEs placed prepectorally or subpectorally? Feel free to PM me if you have any questions or concerns!

  • MandaSkier
    MandaSkier Member Posts: 4
    edited October 2020

    I am almost 10 weeks out and just had my final fill and scheduled the exchange surgery for 11/16. :) My PS said initial stabbing pains were either from where the expanders were stitched in place (and that those internal stitches dissolve in 2-3 weeks) or from poking by the expanders. I could see a fold on one side that skewed my nipple outward but as the expander unfurled things straightened out.

    Each week after 3 out I felt better and better. That's also when I started fill ups--I came out of surgery with 150cc and got 60cc a week for 6 weeks. Once early on I pushed a fill back a week because I did not feel ready to take on more but other than that I liked that pace. During the fill (which is with a small needle through the port and took maybe 45 seconds) I couldn't feel a thing on one side, but on the other I sometimes felt a small jolt when the port was located with a magnet or a prick from the needle stick. I would wake up with pain the next morning and feel stretched for a day or two but the internal poking got better. After this last fill I realized that ibuprofen has wrecked my stomach...hoping in a month I can take it again or some other NSAID because tylenol never helps my pain.

    Now I'm overfilled at 510cc (implant will be 485cc) but more comfortable than I thought I would be at this point. Back sleeping is still rough (pillows under knees and elbows help) and some nights I end up back in recliner.

    Hang in there, it gets better. I don't regret a thing!



  • HH25
    HH25 Member Posts: 14
    edited October 2020

    Hi!

    It’s been 5 months since my mastectomy and I took ibuprofen for about 3 months. I got filled every two weeks at 60cc’s each time. One time they did 80 and I was super uncomfortable. Each time I drove home and went to work the next day but the first night each time I didn’t sleep well. I started pre-medicating each fill day with alternating ibuprofen and Tylenol for hours leadingup to my appointment and that helped a lot.

    Good luck to you!

  • MaritDW
    MaritDW Member Posts: 10
    edited October 2020

    I too am experiencing pain from my TE's. It's only when I try to wear a bra of any kind. It's at the bottom where the elastic is. I asked my surgeon why because it feels like there's a seam sticking out there causing a lot of fraction against surrounding tissue. She said it could be. Ugh. I am confused by all the numbers I hear on these threads. I am overweight at 230 lbs. and 5'7. I had 570 gms of tissue removed in the middle of June. They put 350 in at time of UMX. I've had 50 cc's every week since the subpectoral TE reconstruction began. Then switched to 100cc's every 2 weeks. My pain reduced substantially between weeks 6-7. I used tramadol after the first fill which felt really painful for 1.5 days. Then, only tylenol since, but I take other pain meds for my serious fibromyalgia- an nsaid and gabapentin.

    I feel the hardness and the pressure after expansion. Because of my fat, it's difficult for them to find the port, but they're mostly able to do it pretty quickly.

    My PS is requiring at least a 3 month waiting period after final fill to allow for a sac to be firmly in place for the final implant, so I'm expecting about Feb. I've always been flat so I decided to go up a size. Size 44B just didn't look good and was very hard to find bra sizes.

    My expander has a max fill amount of 800. It's currently 600 and we have 100 more scheduled. Then, I'll get a lift and small implant on top of pectoral on the healthy side. Does anyone else have to wait that long for a pocket to form? Is anyone getting a fill that large? And my biggest question is will salin or silicone be as firm as subpectoral expanders? It is SO hard.


  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited October 2020

    Marit - I just bumped this "exchange" thread to make it active. There are pages & pages of answers to just the very questions you are pondering.

    https://community.breastcancer.org/forum/44/topics...

    If I remember most docs require AT LEAST 3 months after the final fill before exchange - and some require longer.

  • marie914
    marie914 Member Posts: 165
    edited October 2020

    I had my left mastectomy 9/14 and had three fills of 100 ccs each. I had about 50 ccs out in during the surgery. My expander is 600 and she might fill me a bit more. I was 44C but it is different for everyone. She said she will wait 2 months after my last fill. I have heard 1-3 months is common. Sometimes I use a muscle relaxer the first night or two after a fill. I use ibuprofen too. I kind of got used to it feeling tight after a fill for awhile. I’m starting chemo next week and will finish January 6 so I’m planning to get three more fills and hopefully in February or so have my exchange surgery

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