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Tissue Expanders- I hate them!!

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I had surgery on Monday and they put in tissue expanders and down the road plan to do the DEIP flap. I’m really starting to regret my decision on the TE’s. Do they ever get more comfortable? The one on the right feels like it’s over too far and affecting my right arm mobility. And have constant aches and pains associated with them. I hope it’s going to get batter 😫 I’ve had two crying spells today and ready for another. I can’t stand them. I feel like it’s making healing much harder. Also how long was everyone on narcotic pain medicine? I know not everyone takes them at all. I don’t have anymore but it’s only been a week. I’m just not handling the pain as well as I thought I would. I’ve had four c-sections but this seems more uncomfortable.

Comments

  • simonerc
    simonerc Member Posts: 154
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    Tissue expanders are definitely not the best. For me, they felt less bad as I got fills. I tried to remind myself that it’s just a moment in time and each day is one day closer to getting them out. So sorry you are so uncomfortable. Hoping the fills help you as well.

  • herb
    herb Member Posts: 65
    edited April 14
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    They are awful. I am 6 weeksout, I am getting expansions so that is really bad pain. The 1st 2 weeks i did the gabapentin and bacofen as prescribed every 8 hours. The 1st week i did the narco every 6 then stopped. Constipation was not good i took milk of magnesia and stool softener that 1st week to keep myself from that added pain. Now I have to take meds for expansions only for about 3 days. I am 6 weeks out and my pain is not at a point of taking any meds for it. I also had 3 c sections and a hysterectomy and this is the most invasive painful surgery I have ever had.

  • ebfitzy
    ebfitzy Member Posts: 75
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    @simonerc I’m glad you mentioned it gets better as they are filled. Right now I feel every ragged edge on it and it literally feels like I’m walking around with a piece of cardboard under my arm/armpit area. I hope it helps me too once they start to get filled. I never imagined I’d feel worse now than after my c-sections but it’s def worse for me.

    @Herb thanks for sharing your recent experience with me. I would love to follow your journey. So far I have the Gabapentin, but not the other one. I already have a message over to the surgeon regarding the pain I’m experiencing. My appointment is on Thursday so I can’t certainly deal with this terrible pain until then. So I’m hoping she gives me something else to try. I can’t take any Tylenol or Tylenol related products because I have liver pain and my liver enzymes skyrocket with anything that metabolizes through the liver. Now I’m reading how a lot of the treatment options are hard on the liver and so worried I will be limited on my treatment options. Also, I definitely just had the constipation issue. So glad I was able to get cleared out. It was no fun by any means but I did what I had to do!

  • needs.a.nap
    needs.a.nap Member Posts: 195
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    Hi @ebfitzy. I’m sorry you are so uncomfortable! It’s very understandable considering you just had your surgery and you had body parts amputated. It’s a very major surgery!!! Even though some women seem to breeze through their surgical experience, and if you Google about recovery it makes it sound like it’s no big deal, it actually is a pretty big deal. I dare say many of us were in a good amount of pain and/or discomfort, even with pain meds … and had feelings of discouragement during recovery. I remember feeling a sense of “I really can’t do this, I quit!!” about 1 week in … and I was ready to get the tissue expander out!! I remember that meltdown clearly and feeling the same regret you describe. It really does get easier and better!

    But it’s such an individual experience … please check in with your plastic surgeon about your discomfort. Have you had a post-op appointment yet?

    Drains add to the discomfort and the side that you had the sentinel lymph node biopsy will have a good amount of swelling in the armpit area, which is extra uncomfortable too. I only had the one side done so I couldn’t compare sensations on both sides but that might account for the reduced mobility in your right arm if that’s the side of your lymph node removal. With my current surgery, my surgeon had to work on scar tissue near my armpit and I had so much extra swelling in the armpit that I couldn’t hardly lift that arm! After my mastectomy, all the swelling started to really subside in week 3 and I was feeling much less discomfort.

    My surgeon gave me 3-4 days worth of Norco which I gladly used and at the same time had me on a muscle relaxer and alternating extra strength Tylenol and ibuprofen. I think I was taking the muscle relaxers and Tylenol/ibuprofen pretty much around the clock for about 2 weeks then gradually tapered off.

    It was (graphically) explained to me by my doctors that the amount of trauma with a mastectomy and lymph node removal is significant and the complete healing process takes 8-12 months. You are only one week in so there’s probably a good amount of swelling. Hopefully you’ll notice a nice difference when your drains get removed and as the swelling subsides. The tissue expanders may stay uncomfortable … some don’t mind them, I was not fond of mine. It wasn’t painful so much as varying degrees of constant discomfort.

    Keep resting and hydrating!! I hope you find relief quickly.

  • needs.a.nap
    needs.a.nap Member Posts: 195
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    Hi again @ebfitzy. I must have been slowly typing my previous post as you were typing yours and I missed seeing it until after … sorry about that. I’m so glad you reached out to your surgeon. I hope tomorrow is a better day for you!

  • herb
    herb Member Posts: 65
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    I have completed my fills. My expanders are hard and uncomfortable. I don't have much pain. The pain is mostly me trying to do arm stretching to get my range of motion back. It feels like I have a really tight corset on my chest, this is more annoying than painful. My exchange surgery is set for August 6th.

  • wondering44
    wondering44 Member Posts: 261
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    It may help a bit with a few more days. Getting the drains removed was wonderful. Unfortunately, I didn't find the discomfort gone until I had the exchange to implants. I understood that the TEs were stitched in to create the pockets. I'm not a PS so don't quote me on that. I had discomfort the whole way through. I definitely wondered why I put myself through the TEs every day until the exchange. Not 100% I'd do it again either. I was lucky to only have my TEs for three months. I don't pretend to imagine what it would be like to have them in longer. Good thing is they do get removed and this is another crappy part of the cancer that does get better in time.

  • needs.a.nap
    needs.a.nap Member Posts: 195
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    Oh, I’m sorry you are feeling so uncomfortable @herb. Tissue expanders are really not fun!! Nighttime especially was the most uncomfortable time for me. I hope you’ll find your range of motion improving week by week. It takes time.

    I’ve learned more now that I’ve had my exchange surgery. Or at least I understand the sensations and discomfort better. Swelling causes a lot of my discomfort and I notice that towards the end of every day or if I’m overdoing it, the discomfort increases and it all feels tighter. Looking back I can see that that was happening after my mastectomy but with so much numbness and distorted sensation, I couldn’t really tell what was going on.

  • ebfitzy
    ebfitzy Member Posts: 75
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    I’m almost three weeks out from my surgery and I’m starting to feel relief. I had my last two drains removed on Wednesday and it has helped quite a bit with my overall pain and discomfort. I had a little bit of air added to my tissue expanders so they aren’t as “jagged” however I do feel that tight chested feeling. I feel like my chest muscles are really tight. They are adding saline this coming Thursday. We shall see how I feel after that! I don’t want to be big. Maybe a size B? What is everyone else here doing or what size have you done? I’m doing the DIEP? flap surgery down the road. It’s a BIG surgery so I’m not sure when I will get it done. They said minimum 3 months typically to make sure I’m all healed up. But it was no rush. I may be needing chemo now bc of lymph node involvement. So not sure how that aligns with the surgery. I will know more on the first of May. Thanks everyone for your input here and telling me about her experience.

  • needs.a.nap
    needs.a.nap Member Posts: 195
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    Hello @ebfitzy! It’s so good to hear from you. I’m glad things are moving in the right direction for you. I know you were in a great deal of discomfort in the beginning!

    Yay and good riddance to the drains!!! I hope you notice more relief each week … there really was a lot of disruption inside your body, but the ability to heal is pretty amazing! I didn’t have a clue about the recovery part … and looking back, I definitely didn’t allow myself to rest the way I should have. Or eat enough protein during those weeks, etc. Now I understand better some of these fairly basic things about healing!

    I’m sorry you have lymph node involvement … are they getting an Oncotype score for you? How many nodes were positive and how many were removed? If you want to share the information with all BCO members, creating a “signature” under your profile would allow us to see the details of your cancer and your timeline … I know I’m always referring to them and appreciate the details. It’s our cancer story.

    Keep healing!

  • ebfitzy
    ebfitzy Member Posts: 75
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    thank you, @needs.a.nap ! I added to my signature. I had 2 of 4 lymph nodes positive. I am awaiting my May 1 appointments with radiology oncology and medical oncology to determine my upcoming treatment plan, but was told my surgical oncology that they are getting an oncotype score for me and to be prepared for possible chemo. My Ki-67 is high (40%). She wasn’t sure if they’d want to radiate or not, so she set me up with radiology oncologist to discuss. I love that that both the radiology and medical oncologists are at the same place with back to back appointments so I feel good that they can communicate easily and come up with the best plan for me!

  • needs.a.nap
    needs.a.nap Member Posts: 195
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    That’s a great signature description @ebfitzy!