Deconstructing for pain relief

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  • BlueHeron
    BlueHeron Member Posts: 154
    edited February 2016

    I want to say thank you to all the amazing, strong women posting here. Your stories have helped me.

    I had unilateral Mx 3 weeks ago, and I decided against recon in part because my research showed me the risks, and it just wasn't worth it for me. Women like you, who are willing to share your stories, helped me avoid multiple procedures and surgeries at the least, and possibly avoid long term complications and pain at the best. I know there are women who sail through the whole thing. I just couldn't justify taking the risks.

    I'm half-flat, still recovering physically, but emotionally just fine with my body as is. Thank you for being brave, and speaking your truths.

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  • ronqt1
    ronqt1 Member Posts: 811
    edited February 2016

    Hello again, after reading some of the posts above, my case has been termed "unique". Still fill like I have the implant in. I see there has not been any posts for quite a few months. Is anyone still on.

    Hugs,

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  • jeaniept
    jeaniept Member Posts: 49
    edited April 2017

    Yes, my case is considered unique, too. ("Women usually do fine with reconstruction!") Augh--I have heard it so many times. I haven't been on here for a long time, but I just started to go the round of doctors again to see if getting my right-side implant out will help with my pain. I hope you're feeling better. <3

    Jeanie

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  • jeaniept
    jeaniept Member Posts: 49
    edited April 2017

    Hi! I just read this. Though I know this was written some time ago I want to say how happy I am for you!!! If my story about continued pain was one that helped you in your decision to not do reconstruction, I am glad for that. The day after my mastectomy and expander placement at Sloan Kettering, a group of us were in a conference room to learn 2 things--Exercises to keep the arm mobile, and guidance with our reconstruction. After part 1, the women who had chosen NOT to reconstruct (only a few) left the room. I recall being puzzled..Why not do reconstruction? I was 50 and not dating but thought I somehow needed to get an implant so I could be in the dating game. SO SILLY!

    (PS I got married 2 years ago, my husband could not care less that I have one not-so-great looking, nipple-less implant! I never did a nipple because I always thought I would be having the implant removed).

    If I had known then what I know now!!! I still feel like I am in the 'cancer bubble,' due to my pain, whereas others (some, not all, I know) are able to move on.

    You sound like a strong, confident woman and I am inspired by you! Thanks.

    Jeanie

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  • jeaniept
    jeaniept Member Posts: 49
    edited April 2017

    Tina337--Sooo inspiring to read your story! I've been in pain for 6 years. I have just sucked up the courage and strength to go the round of doctors again to see if there is hope in deconstruction. The first time I heard nothing hopeful. I am going to do myofascial release, I am going tomorrow, and try some yoga and see how it goes. If not enough relief, surgery will probably be next.

    The breast surgeon I consulted with last week said the pain would "probably" be relieved by taking out the implant but no guarantees. That is better than what I have heard from others--"live with it, sorry..do Pilates..we could take it out but it probably won't help."

    I am so happy that there is hope! I know we are all different, but maybe I can get at least some relief from deconstruction. Thanks for your story!

    Jeanie

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  • peyton3
    peyton3 Member Posts: 43
    edited May 2017

    I am exactly one year out from double mastectomy followed by reconstruction with silicone implants. I kept thinking that with time it would get better as your body adjusts to the implants, but it has only gotten worse. I have always thought that my implants were too big for me (500cc) I am four eleven and very small frame, I was barely a B cup and now a C cup feels too tight. I never asked to be bigger in fact I was adamant that I remain the same size but obviously my PS had other ideas. I am going to see a new PS at the end of this month to see if going to a smaller implant would help or just plain have them taken out. I am almost to that point. It feels like my muscles swell and the implants tighten down like a vice on my chest, then they distort and move, I have bubbles in the left breast which my original PS said did not make any difference, no big deal. I am so glad to hear some of these stories because I believe that going smaller or just taking them out can make a difference.

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  • peyton3
    peyton3 Member Posts: 43
    edited June 2017

    Has anyone out there had their implants taken out recently and did it make a difference. I read where people are thinking about it but no has actually posted that they did do it and got relief.

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  • Lisey
    Lisey Member Posts: 1,053
    edited June 2017

    I'm on a facebook group, Flat and Fabulous. You'd be surprised how many THOUSANDS of women are out there rocking being flat. (It's opened up my warddrobe tenfold). Women post their stories and so many had implants and the minute they were removed they felt better. F&F is for the curious and you can ask questions. Women will respond - it's very active. I suggest joining if only to see your options. I had TEs put in and that was enough for me... out they came and flat I went. I actually love how I look being flat (i feel like a ballerina). And I feel 100% back to normal with my body.

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  • LaraDou
    LaraDou Member Posts: 2
    edited November 2017

    I just found this site. I had implants for bilateral reconstruction with saline implants for 20 yrs. with no problems. My problems began when they deflated and were replaced. Infection on 1 side, and I had both removed. After 18 months I wanted to try reconstruction again, (jealous of Angelina Jolie I guess, even though I have always been a “B” cup) I had the replacements in for 4 yrs with pain. I wore a strap over upper chest ti squish them down in order to decrease the pain. Now they’re out - Oct 9, 2017. MD said it would get rid of pain. 1 month later, I still have pain

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  • peyton3
    peyton3 Member Posts: 43
    edited November 2017

    Laradou, what kind of pain are you experiencing now. I had my implants removed and replaced with smaller ones over the muscle instead of under the muscle. The more I heal the worse the pain gets. I have been thinking about taking them out altogether but after reading some of these posts I'm not sure .

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  • Lisey
    Lisey Member Posts: 1,053
    edited November 2017

    Post Mastectomy Pain Syndrome is a real thing. It can happen with reconstruction and no reconstruction. If you've had a mastectomy, about 30% of women get PMPS. Many are helped with PT.

    If you consider what they did to our bodies (mine included), they basically tore our pec muscles in half and stuffed in a hard plastic turtle shell into it like a sandwich. The longer you have those things in you, the more you can have contracture. Some women experience immediate relief once they are removed. Others need PT and massage and even then have some linger pain. I can say that many women post about relief the minute they come out.

    If you join Flat and Fabulous on Facebook, you can ask all the questions you'd like. I would say about 50% of the thousands of women who are in F&F had implants initially and can give you their experience with removing.

    I got IMMEDIATE paid relief by removing, but I still was 'tight'. I went to a PT therapist who specialized in Breast Cancer Mastectomy patients and she did a lot of work on my chest muscles to try to help them recover. I had some adhesions from scar tissue and it felt like I had a cookie sheet stuck on my chest I was so tight. PT got rid of the tight feeling in about 3 months.

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  • LaraDou
    LaraDou Member Posts: 2
    edited November 2017

    Hi Peyton 3, When I had the implants in I just kept wearing (for 2 1/2 yes) the bra strap' stabilizer given to me to help the implants (A cup)stay low. I was able to function well, but my back hurt. So I waited until I retired to get them out.

    The pain is burning and aching mostly under arms and ribs. PS says that scar (contracture) ALWAYS forms around any foreign body, and the strap was pushing the 'pillows' of the implants, so to speak, down onto the scar. I'm not sure that I understand it.

    Just started taking Neurantin for pain per my internist. Radiology studies done, and nothing untoward was seen. I tried the strap directly on my deconstructed chest, but it hurt. I will now put those soft inserts they give you in the hospital right after original mastectomy and then try to use the strap.

    I'm befuddled and am trying to keep my chin up


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