Breast Expanders are the devil :(

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angiem7571
angiem7571 Member Posts: 6

I had a breast reduction in May. Pathology came back cancer cells in both breasts, I immediately chose double mastectomy--no question. While I do not regret my decision to have that, I just wish there had been better information out there on what to expect. NOTHING I have googled could have prepared me for what I have been going through these past five weeks!!!

Ok, forget the tubes (also the devil) the expanders feel like bricks (the BIG kind) in my chest. I have trouble falling and staying asleep. I cried every day for 4 1/2 weeks... now I am just mad. I feel like I have been through ENOUGH already, when is my body going to give me a flippin break???

EVERYONE keeps telling me "it will get better" I'm getting really sick of hearing that. I want to know WHEN it will get better (yes, I know, everyone's body is different)

I've had my first fill of 60cc in each breast last Friday. Shocker.... made the pain worse. Going again on Thursday for the next fill. It has been suggested to me that I take a break from the fills or request a smaller amount to be put in... won't happen, I want this over and done with yesterday. If I could get him to put in more I would. (I don't want to be very big---full B so I don't think it will take very long to fill them)

I have been googling, trying everything I can get my hands on to try to ease the pain/discomfort but nothing is working. At my suggestion, my doctor give me a RX for muscle relaxers, but the only thing that has helped with (not complaining) is the spasms. (not fun)

So if ANYONE has tried something that has worked, please PLEASE tell me... I don't know how I am going to get through these next months if it doesn't get any better.


Thank you,

Angie

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited August 2016

    Hi Angie and welcome to Breastcancer.org!

    We're so sorry you're experiencing such discomfort and pain. You must be very frustrated!

    However, we're very happy you've found our incredibly helpful Community -- you may find some answers and support in our Breast Reconstruction forum, specifically the popular threads TE Trouble, TEs - a Beginner's Primer, and Exchange City

    We hope this helps you find the answers you're seeking!

    --The Mods

  • fredntan
    fredntan Member Posts: 1,821
    edited August 2016

    I know it sucks. Try the muscle relaxers, put some headphones on and walk. try deep breathing and stretching that shit out. breath in deep and hold it. repeat.

    I did find docs that didn't make you wait the expected 1 yr after rads. but you might not have had rads.

    call my reconstuction team in San Antonio-they do this diep flap a lot. it would mean a 3 week hotel stay. but since then I have learned that american cancer society can help a lot if there is no Hope house.

  • Mom4four
    Mom4four Member Posts: 117
    edited August 2016

    angiem - I had a very horrible time with expanders and especially after the fills. I read here about the use of Valium as it not only relaxes you but has something that helped the muscles relax also. It was very helpful for me. The so called muscle relaxers did nothing for me

  • Bigbluefish
    Bigbluefish Member Posts: 41
    edited August 2016

    angie, tomorrow is 3 weeks for me. i woke up saying "ow, ow, ow". like you said nothing prepared me for that pain. the first week was around the clock lortab and celebrex and only felt a tiny little bit better when the first two drains came out (the devil). i was able to drop the lortab during the day, still taking it in the morning (the worst pain) and at night in order to get comfortable. at my two week appointment the PS took the second set of drains out but followed with a fill of 100. I could barely catch my breath. he had to give me more lortab just to get me off the table. the pain in my chest was awful. he offered me valium but i didnt take it. should have. this week has been more bareable. my second fill (5 days later) was not as bad - 50ml. i do think the tightness is muscle spasm - a 24 hour / 7 days a week muscle spasm. i have been able to go outside and walk - hurts like hell when i walk, but i do think it has helped overall. as long as i keep moving the muscles loosen up, but if i use my arms to much then they tighten again. for example i tried reaching into the bottom of the wash machine, bad idea. that side of my chest has hurt all day. agree these things suck


  • barbski60
    barbski60 Member Posts: 39
    edited August 2016

    I took valium and 2 tylenol prior to my fills (I'm at 500 now) but I gotta say the last fill (60) hurt for 2 days. The best solution was going to see a

    physical therapist specializing in oncology. I also felt better after the excess fluid was drained - the too tight underwire bra feeling went away. I feel pretty good now. I started working out with a personal trainer this week so I'll be strong for my DIEP flap on 09-21.

  • Lisey
    Lisey Member Posts: 1,053
    edited August 2016

    Angie,

    I had TEs for 2 weeks... and then told my PS to take the damn things out and make me flat. NIGHT AND DAY difference! I finally feel like 'me' again... and I don't have to worry about ALCL (lymphoma) or all the risks with the TEs. Read my tagline, that says it all. There's a large group of women in a Flat and Fabulous group on Facebook.. you should join us.

  • Blueorange
    Blueorange Member Posts: 76
    edited August 2016

    I have tissue expanders as well, but am only 10 days post op. My Dr pre scribed Ativan (sp?) for its muscle relaxing effects. I'm still taking the heavy post op drugs aa well though, so I think that may be what is helping.

    I agree, I was not prepared for this level of consistent pain...I'm not going to expand much.

  • angiem7571
    angiem7571 Member Posts: 6
    edited August 2016

    The problem with valium is there is no way I can take that and be able to work. The 5mg tablets they gave me after surgery put me in loopey land. :(

  • Cancerpickedthewrongone
    Cancerpickedthewrongone Member Posts: 33
    edited August 2016

    Angie

    I agree the TE are horrible and the expectation is not set correctly up front. I have had my expanders for almost 8 months 😳 I'll admit at first I was about to call it quits the pain the spasms the fills they were too overwhelming on top of the cancer dx , a BMX , and facing chemo & rads. I took Percocet for the 1st 2 weeks, (luckily I was on disability) 1/2 an hour b4 each fill I took Tylenol/Aleve (can't recall which one) then repeated every 3 hours. I kept ice packs on my breast throughout the day and that actually gave me great relief! I slept on a recliner for months bcz laying on the bed was unbearable as I am a side sleeper. I know it seems like it's not possible but it does get better, the fills actually stretches the muscle to be able to support the implant so once the fills are over a lot of the discomfort goes away. Hope you find some relief, try ice packs again for me they made a huge difference.

    Allie

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited August 2016

    My TEs were very painful, too. I started getting fills 7 days after surgery, and every fill hurt but the fills were done after a month. During the fill process I went twice a week to a specially trained physical therapist (LANA-certified). Her massages saved my sanity. I had my last - and largest - fill July 2nd and was in terrible pain. I went to my PT on July 3rd and felt so much better I was able to celebrate the 4th of July without trouble. Also, after the fills were done the pain subsided. The TEs still felt hard and weird, like rocks, but didn't keep me awake.

  • TampaWhit
    TampaWhit Member Posts: 9
    edited September 2016

    Ouch, I know exactly how you're feeling. I was in constant pain for six weeks after my surgery, but I swear it does get better! I'm fine now with just Advil. What muscle relaxer did your doctor put you on? I tried Skelaxin, Valium, and Flexeril but only the Flexeril gave me ANY relief. However, Skelaxin is my PS's preferred drug and the one she prescribes every patient first because it has the least drowsy/loopy effects. It didn't work for me, but maybe it would for you!

    I made sure my TE fill appointments were either right before or right after the scheduled time to take my pain reliever and muscle relaxer. Except the one time I didn't.... I regretted it immensely. That was also the time I asked for 100cc fills instead of the usual 60cc. I was in excruciating pain for days and I'm sure it set my recovery back. Now I'm finished with fills and just looking forward to my exchange surgery in December! It's still tight and uncomfortable, but at least we have an end in sight :

  • Bluebirdgirl
    Bluebirdgirl Member Posts: 115
    edited September 2016

    I agree with all of you, these things are like rocks for breasts. I take zolpidem to help me sleep at night. I am so tired of sleeping on my back!! And that feeling when you sit up in bed first thing in the morning, the worst!!! I noticed some "knots" on my right breast and went to see PS. He said that's just your expander! Barf! He filled mine with about 130 ccs at time of surgery, talk about pain. I was in hospital for three days. This Friday will be four weeks post BMX and I haven't had a fill yet due to some infection in my scar, so waiting two more weeks. I have to start work next week, I'm out of vacation and sick time and can't afford to take FMLA. I hope I can get through it. Has anyone tried the scar cream that PS sells, this one is called bioCorneum. It's a silicone product. I really like it. Reduces that feeling I have of my rocks being rubbed raw by bra or clothing. I will be so happy when these are out, they really kind of nauseate me

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