About to lose reconstruction after two horrible years

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  • pupmom
    pupmom Member Posts: 5,068
    edited July 2017

    Herculesmulligan, I had necrosis of my femurs. Doctors, including my oncologist, thought it was a spine problem. So I had spinal fusion at L4-L5, and it did nothing to alleviate my pain. I spent a year in excruciating pain, lost almost 30 pounds, was totally dependent on a walker and wheelchair, and was constantly attacked by the orthopedic surgeon's medical assistant for needing too many pain pills and not walking enough, sigh. Finally, a rheumatologist my gp referred me to looked at my hips. He immediately ordered an x-ray and the real problem was immediately discovered.

    Although there is no clinical support for this, my husband and I believe the Zometa infusions I received are responsible. The pain happened a few months after starting the infusions. Anyway, after two total hip replacements I am doing fine. I had to go through complete hell to get here, including probably unnecessary spinal surgery, but, oh, well. Anyway, I well know what chronic pain is like, and am happy that Sara is probably at the end of that nightmare.

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  • Herculesmulligan
    Herculesmulligan Member Posts: 175
    edited July 2017

    fosamax was associated with femur head necrosis so it stands to reason that zometa could too.

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  • pupmom
    pupmom Member Posts: 5,068
    edited July 2017

    The doctors adamantly deny it, but I know Zometa causes jaw necrosis, so it's not much of a leap. Thanks for telling me about Fosamax. I did not know.

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  • Anangke
    Anangke Member Posts: 2
    edited August 2017

    So nice to hear you had a good outcome from your surgery. I hope everything continues to go well in this regard so you can turn your thoughts to the future and the pleasures to be had in just 'being'. ٩(๑•◡-๑)۶ⒽⓤⒼ❤

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  • Anangke
    Anangke Member Posts: 2
    edited August 2017

    So nice to hear you had a good outcome from your surgery. I hope everything continues to go well in this regard so you can turn your thoughts to the future and the pleasures to be had in just 'being'. ٩(๑•◡-๑)۶ⒽⓤⒼ❤

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  • DSW1976
    DSW1976 Member Posts: 118
    edited August 2017

    Hey just wanted to offer support as I have one foobie and one flat side so Im safe as I have both and have lived with what you are describing for last 2 years.. I had originally expanders after double masectomey but got staph infection on non cancer side almost killed me so after p.s finally had to listen as I was close to death at hospital he removed non cancer side and for last two years I have had nothing but horrific pain and hell in cancer side and get no where with him or his wife who happens to be my cancer surgeon.. I understand you 1,000% in just wanting/ needing it out.. Its not always as simple as getting another surgeon. Im sorry this has happened to you itsbjust awful and his arrogance is just wrong.. I dont understand the fights that go on this sight anymore.. You should be able to come on here for support as should anyone and not have them fighting over who calls what what ... I dont think anyone trying to recruit flat chested people or implanted women😁 so hopefully they all calm down and ;help people and each other... I will be thinking of you and hoping for the best in whatever you decide.. Xoxoxo

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  • Sara208
    Sara208 Member Posts: 27
    edited August 2017

    thanks, DSW1776. I agree with you completely. I feel like this site should be for seeking and offering support, not taking jabs at each other and taking advantage of people's pain to make personal attacks on others

    I really overstated not trusting my plastic surgeon in my first post. I feel 100% differently about him now. When he did that July surgery, he found that my tissues (post-radiation) were an absolute mess. He did all he could, but last week the wound opened up like 3" wide. It was terrifying. I lost the reconstruction just like I thought I would--it came off last Thursday. So now I'm flat on one side and fabulous on the other. I'm having a hard time emotionally, but there was simply no other option. I can do the back flap surgery someday if I decide to, but my body's been through so much agony, I can't imagine opting for more.

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

    Sara I'm sorry it turned out how you worried it would. Regarding emotional support, there are many women on the flat and fab Facebook page who are unis. They can offer all kinds of advice and support if you need it. Many had recon fail and they can grieve with you as well, since they've been there. I hope you consider joining us, even if it temporary.

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  • Sara208
    Sara208 Member Posts: 27
    edited August 2017

    Wonderful--I'll check it out. Thank you!

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  • Shellsatthebeach
    Shellsatthebeach Member Posts: 316
    edited August 2017

    Hi Sara, I think it is an excellent idea to give your body some time to heal. You can always reconstruct at a later time.

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