Breast Expanders Removed

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lxcarr
lxcarr Member Posts: 17
edited April 2016 in Breast Reconstruction

I had my breast expanders removed. My bilateral Masectomy with immediate placement of expanders was July 28,15. Because my cancer revealed more than MRI showed and cancer butting the chest walI I find out that I needed chemo TC and 36 rounds of radiation. From the very getgo I had severe pain in my left side and doctors ignored me. The surgeon and plastic surgeon basically told me to use my powers. I was in so much pain. After I finished radiation and healed still in very much pain I followup with plastic surgeon and he says extenders are coming out. Seems the radiologist doctor saw more and i will never know My nerve pain still severe and many drugs and im still in pain. I hope not for the rest of my life. This is horrible. Removing the breast extenders did not relieve my extreme nerve pain. I was very inflamed and had seroma. The left extender had to be cut out in 3 sections and was all wrinkled. The right extender came out without difficulty. My plastic surgeon was very ignorant as I would cry and ask him to help me. The whole time my body was rejecting the left extender. My nerve pain is still severe.

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  • Maggerle
    Maggerle Member Posts: 37
    edited April 2016

    I'm so sorry you've been through so much w/so much pain...A friend of mine, not on this forum, that recently had breast cancer advised me to get in touch w/patient advocacy at the hospital I had my exchange done...I, too, was very much ignored when I began swelling and suggested it might be Lymphedema...They had tunnel vision on what Lymphedema looked like, and didn't feel I fit the criteria...Last Friday, an internist diagnosed me with Lymphedema...I only tell you this to say that I've met of couple of gals on here that have taught me to speak up...I've actually printed material from a gal w/the lymphedema advocacy program, and intend to get it touch w/patient advocacy and ask that the reconstructive dept. be made aware of my issue, and hopefully educate themselves so other women won't be misdiagnosed, and disrespected for what is happening to their bodies...Perhaps you could do something similar in your situation...It won't alleviate the pain, past and present, but maybe empower you to feel you have some control over your body...I'm speaking from my own experience, as I felt completely helpless when I was trying, so desperately, to find out what was happening to my body...Prayers for you that you get some relief from the nerve pain and a positive outcome with your treatment...All the best, Maggie

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  • lxcarr
    lxcarr Member Posts: 17
    edited April 2016

    my fingers and bone pain is extreme. I get up from sitting down for a few minutes and have to do it slow to work myself im again. I'm on Arimidex. I cant tell what treatment created all the aftermath effects. My fingers are the worst and my knees and lower back. I have a hard time writing. My fatigue is still moderate to extreme and my nerve and chest pain from masectomy left side, cancer muscle. Is terrible pain. I feel bad more than good . Hartford who is paying me for long term disability says i have to a apply for social secutility disability! So hard! Feedback appreciated

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2016

    I have the finger issues and bone pain from Arimidex. Sleeping with a wrist splint has helped tremendously. Come on over to the Arimidex thread in the hormonal therapy section. Thereis tons of good advice there as well as support.

    Can't believe they said "Use your powers." !!

    Hope things improve very soon!

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  • lxcarr
    lxcarr Member Posts: 17
    edited April 2016

    Thank you. If only I knew that masectomy surgery in many cases and reconstruction cause chronic pain and very severe for many women. To be in pain every day and dealing with bone pain and severe fatigue is so hard. I'm unable to work because of the severity of my pain and have to go through paper hell process and hope to get disability SS. However been told that is a difficult process.

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  • lxcarr
    lxcarr Member Posts: 17
    edited April 2016

    thank you so much. I'm pained everywhere. My nerve pain on left chest side the worst, my bone psin is consistent every day and makes me miserable. Fatigue is another nightmare. Thank you for the input. I can hardly write with my fingers.

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  • macb04
    macb04 Member Posts: 1,433
    edited April 2016

    Ixcarr, sorry to hear you having so much unrelieved pain, sounds like they blew you off. And bad fatigue, on top of it! I know what havoc these kinds of problem can wreak on your mind and body. I had surgery number 17, yes that is not a typo, I had 15 reconstruction surgeries, the last one was March 3rd. I had LOTS of problems /setbacks that dragged out the whole thing much longer than I wanted, but I persevered and finally have an ok result. So I had this crazy, crazy fatigue after this last surgery that went on for weeks. . My house was an absolute disaster, no one but me ever does any cleaning, dust and dog hair and clutter everywhere. So I finally started to look for something to help me get over this pervasive fatigue. I took the following, CoQ10 by Jarrow, Cordyceps by Fungi Perfecti, and Rhodiola Tincture by Gaia Herbs. Just saw the more recent Rhodiola study and it said there was no observed change in the mammary epitheal Estrogen alpha receptors. So I am notworried to use it, but everyone has a different take on things. My goodness, what a fantastic difference!!! Not sure if one or all of them worked together, but my fatigue is finally gone. I even got my house cleaned. Those things have research behind them, and can be bought online, I like at Natural Partners

    http://www.ncbi.nlm.nih.gov/pubmed/18800886

    http://www.ncbi.nlm.nih.gov/pubmed/26850689

    http://www.lifeextension.com/magazine/2008/2/coenzyme-q10-and-cancer/page-01

    http://www.spandidos-publications.com/or/30/4/1996

    http://www.integrativecanceranswers.com/cordyceps-cancer-support-and-immune-modulation-from-an-ancient-chinese-herbal-medicine/

    Could you go see a Pain Specialist? Have heard of people using Gabapentin for Nerve Pain. Although, even a regular provider can prescribe this kind of thing. I also take Curcumin for achy pain and inflammation. Please think outside the box, search until you find someone to help you. There are probably things you haven't tried yet, I could think of more things if you want to PM me.

    Good luck. You will get better.

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