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Terrible pain from tissue expanders

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winnie1414
winnie1414 Member Posts: 11
edited August 2022 in Breast Reconstruction

Hi there,

Last week I had a skin sparing double mastectomy/sentinel node removal with the placement of tissue expanders (300 cc's put in the left expander and 240 in the right). I am experiencing terrible pain/burning sensation along the bottom of the implant (top of rib cage area). I was in the hospital one night and was sent home the next morning. I was given 1mg of Hydromorphone to last about 3-4 days and then was to switch to Advil/Tylenol. I requested a higher dose when I was leaving the hospital as that dosage was not even touching the pain but was told no. (I have had a nursing visit and the pain is not due to an infection)

One week in and I have not felt any relief at all from the pain. I assumed it may get a little better each day but it has been non-stop for the whole week. What I'd like to know from those of you who experienced pain after tissue expanders is how long it took for the pain to settle down. I was told to expect the expanders to feel "clunky" and "uncomfortable" until they are swapped out for the implants. If this pain could be downgraded to clunky... I would be able to deal with this. I'm not getting the swap for about 9 months so if this pain is expected to continue for that long, I will have to re-evaluate my plan.

I would so appreciate hearing from any of you who had a lot of pain with expanders. I hope that it has eased completely for you!

Sending such big hugs out to all of you!

Thanks!

Winnie 1414


Comments

  • lanne2389
    lanne2389 Member Posts: 220
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    Hi Winnie,

    I also had a double mastectomy and received expanders in 2017. My pain was best described as a sandpaper or a broken glass feeling. It lasted until my expanders were removed and I had DIEP reconstruction. I wasn’t willing to try implants after such a bad experience with the expanders. I think there are just some people that have a higher nerve sensitivity than others and we unfortunately are in that camp. If I was you I’d make my surgeon get a scan to make sure placement is correct - I think it’s odd that your pain is in such a specific place - on both sides!

  • winnie1414
    winnie1414 Member Posts: 11
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    Dear Lanne,

    Thank you so much for taking the time to respond. I really appreciate it!

    I'm so sorry that you have had to go through this whole experience as well. I hope that you are feeling well and any treatment or medications you have taken have helped in your recovery.

    I had my first check up at the breast clinic yesterday (2 weeks in) and he said that everything looks like it is healing well. I described the pain and he said that having the mastectomy and expanders (placed under the muscle) does affect the nerves tremendously and that things will settle down in time. He said to lightly massage along the line of nerves and that will also help to relieve the pain. He did say, which I've heard a lot, that the expanders are just not that comfortable as they are much more rigid and larger in circumference than the implant. After 2 weeks I'm still feeling a lot of pain and discomfort but slightly less than after week 1. I still haven't had my drains removed yet but when that happens I'm hoping I will feel a little better too. I really like your idea of asking for a scan regarding placement. Thanks so much for the suggestion.

    Thanks again Lanne and I truly hope you are feeling well!

    Take care,

    Winnie


  • summerangel
    summerangel Member Posts: 182
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    I had terrible pain just like you're describing with my TE's. They only put 100 cc's in mine, I can't imagine having such a large initial fill! I took strong pain killers for 3 weeks. The pain did go away after I got my implants, though, and was slightly better before that.

  • winnie1414
    winnie1414 Member Posts: 11
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    Dear Summerangel,

    Thank you for sharing your experience with me. I hope that you are well on the road to complete recovery!

    I'm so sorry that you had terrible pain as well, but hearing your story makes me realize I'm not alone in this experience. I'm so glad that you felt a lot better after the implants! That is so reassuring. If I'm reading the information correctly, you had your implants put in a few months after the reconstruction? That is awesome if I'm interpreting that right. I won't be able to have the swap for another 8 months or so which is why I am so concerned with the expander pain. The nurse who changed my dressings this morning reassured me that once the drains are taken out, that will help to relieve some of the pain. I've already had the drains in for 2 weeks but still not able to have them removed yet. Fingers crossed, very soon.

    Again, thank you for letting me know that you found the TE's very painful and that the swap to implants really helped.

    Take care,

    Winnie

  • K-Gobby
    K-Gobby Member Posts: 144
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    Winnie

    I have one expander for now. In for 4 months. Out with my other side AFTER my blood clot goes. At least 2 months.

    At surgury. I was given a pain block. Also pain narcotics I took for 3 days. I also had my ovaries and fallopian tubes out the same day. FEB 9, 2022

    That block worked. No pain. Only numbness I was told may be there a long time. It mostly still is. My under arm hurt from under armpit to elbow. 3 lymph nodes had been removed.

    The expander feels hot sometimes and rubs at times on my bra under my arm.

    Every bodies body is different. Crazy. I look forward to the implants. I am not filled big, bit I cannot remember how many cc's.

    Kat

  • winnie1414
    winnie1414 Member Posts: 11
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    Hi Kat,

    Wow, you have been through a lot having the mastectomy and the removal of your ovaries and fallopian tubes at the same time. I am so glad that you don't have pain but I'm sure the numbness is also difficult to deal with. I'm sorry that you've had to experience pain with the lymph node removal. I sure hope that pain has subsided. I also hope that the blood clot clears and that you are well on your way to recovery.

    You are so right in that everyone's body reacts differently. I was given narcotics but unfortunately for me, the pill form of hydromorphone didn't seem to help. (I did seem to get relief with what was given to me intravenously in the hospital but my stay there was short lived:)

    I wish you all the best moving forward. I can't tell you how much I appreciate the reply. It's hard not to feel like you're alone on this journey but reading everyone's replies really helps.

    Take care,

    Winnie

  • cookie54
    cookie54 Member Posts: 700
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    I am with you Winnie , I found them to be very painful! I also only had 100cc's to start ,as time went on (6 months for me til exchange) it lessened. I always felt like I was carrying rocks around strapped very tightly to my chest, terrible pressure! I think like everything else we endure in this process we get through somehow! Hang in there it will ease up some and you will likely adjust to the discomfort. Best wishes.

  • winnie1414
    winnie1414 Member Posts: 11
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    Hi Cookie54,

    Your description is exactly how I feel! Rocks strapped tightly to my chest.... bang on! Thank you so much for responding and helping me to feel less alone. I have had so many people ask, "Shouldn't you be feeling better day by day?" I know their intentions are great, but I almost feel guilty that the pain isn't easing up yet. After most surgeries I've had, the pain slowly, but steadily decreases, but not yet in this situation.

    Thank you so much for sharing your experience! It really helped! I hope that you are doing great now!

    Best wishes to you as well.

    Winnie

  • summerangel
    summerangel Member Posts: 182
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    Hi Winnie,

    I did have my exchange surgery pretty quickly, I was lucky in that. I was also lucky that my doctor prescribed narcotic pain meds for the entire 3 weeks that I needed them. My plastic surgeon said that he sees more pain with under-the-muscle TEs when the woman has tight pecs, usually from exercise. I had very well-developed pecs from doing lots of pushups, which was my favorite exercise before my surgery.

    I hope things get more comfortable for you. Is there any way you can move up the exchange date? 9 months seems like a very long time.

  • serendipity09
    serendipity09 Member Posts: 769
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    Hi Winne! So sorry you are going through this. I had my TE's for 9 months before the exchange to implants. I found the TE's to be heavy and uncomfortable; I feel no difference with the implants. To me, and this is just my experience, my implants are uncomfortable, heavy and painful. They feel foreign to me, I'm very aware that they are not a part of my body 24/7. I feel like I too have rocks in my chest and that pressure, "iron bra". I thought after the exchange I would get used to them, but I haven't and that was almost a year ago. I'm actually having them removed in August and having a DIEP. I will say that I had to have radiation after my exchange surgery, however, it's not only the radiated side that bothers me, it's both. My PS told me that some women just do not get used to the feeling, but most do.

    I hope you get some relief once you have your exchange. So many women I've spoken to do have that relief, unfortunately I didn't.

    My best to you.

  • winnie1414
    winnie1414 Member Posts: 11
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    Hi Summerangel,

    That is very interesting about the pain being more severe for under the muscle tissue expanders in women who have tight pecs. I am learning so much from all of you on this forum, which I so appreciate!

    I am so glad that your exchange was done in such a timely manner. I actually was told by my first surgeon (who ended up having to refer me on due to a lack of OR time at his hospital) and by the surgeon who did the TE's that the wait would be 9 months so that all would be healed etc. I see him again in a few weeks so I will certainly ask again. I would love to have these exchanged sooner!

    Thanks again for your feedback. Wishing you the best,

    Winnie

  • winnie1414
    winnie1414 Member Posts: 11
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    Dear serendipity09,

    Thank you so very much for your response. You are the first person I've communicated with that was also told the wait would be 9 months. I'm so sorry your experiences with the tissue expanders and implants have been so painful. I've only been going through this for 2 weeks so far; I can't imagine the entire 9 months feeling this way, as you have. I'm also sorry to hear the implants didn't feel any better. "Iron Bra" is another term that speaks to me. That is so accurate!!

    Good for you for being proactive and having them removed to do the DIEP in August. I would be so curious to hear how you feel after that procedure if you are able to comment down the road. I wish you an amazing result and pain free recovery.

    Thank you so very much for validating how I've been feeling. Unless someone has experienced it, I don't think they can truly understand. No fault of their own as it is pretty unusual to have a foreign object embedded in the body. Hard for them to "get it" without having experienced it.

    Take care and I wish you great success with the DIEP.

    Winnie


  • js44
    js44 Member Posts: 11
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    Hi Winnie, I am five weeks post-mastectomy left side with under-pec tissue expander, and am still in great pain. I was told there were two muscle tears during the placement, one which the surgeon tried to repair. I finally took myself off of Tylenol and ibuprofen last week, thinking multiple doses per day for a month was quite enough for my liver. I will be seeing the plastic surgeon this week, and although I’m sure he thinks we’ll be doing the first fill, I’ll be asking for the expander to be removed. I can’t deal with this plus chemo, which is yet to start. Every fill will just set me back, and I am barely coping as is. I have also decided I would rather go flat than have an implant and potential pain/complications. I have high genetic risk for bc, and don’t want to go through this again on the other side down the road. Ihope you are feeling better! Take care.

  • winnie1414
    winnie1414 Member Posts: 11
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    Dear js44,

    I am so sorry that you have had to go through such pain as well! It is so difficult having to deal with the whole concept of breast cancer and then the incredible pain from the tissue expanders. My heart goes out to you!

    After my original fill during surgery, I was only able to get one fill because the skin is paper thin on the side where the cancer was located. You can literally see the expander about to poke through. As a result I am not able to get any future fills and they are hoping to do the "swap out surgery" soon.

    I totally understand your decision to have to expander removed. That is exactly how I felt as well. I was going to make a decision at the 6 week mark. Coincidentally, the pain eased significantly after 6 weeks. It was a dramatic difference so I decided to leave them in but who knows how I'll fare with the implants. There are so many decisions to make all while you're in such pain. It's awful and my thoughts are totally with you!

    If you have the time or energy, I'd like to hear how your appointment goes regarding the removal of the expanders. If you're not up to it, I totally, totally understand. Just know I'm supporting you during this very challenging time.

    Sending hugs,

    Winnie