Necrosis after BMX with no reconstruction

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aggiemegs
aggiemegs Member Posts: 146

This is such a gross question, but for any of you that had necrosis, did you also experience a rotting flesh smell? It is so nasty, I called BS about it today and he just said to try to keep it dry and he'll see me at my appt tomorrow. No clue how to keep it dry, because the problem area is in a fold of skin below the dog ear, so anytime I am sitting, it's skin on skin!

I'm going to be asking him a lot more questions tomorrow, as his approach thus far has just been "it'll heal, but it will take time." That's literally all he told me! The first two weeks I spent thinking this was a bad bruise! Tomorrow will be 3 weeks since surgery.

Oh, my other question for those who have experienced this: did you have additional pain and extended bleeding? I feel like I shouldn't still be in pain, but I am!

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited March 2016

    I'd expect that he will show you how you should be treating the area. But in case he says he doesn't have the things he thinks you should use there, take a number of things with you in a bag.

    Maybe cornstarch, moleskin, and various wound treatment things/bandages (ask your pharmacist for suggestions--as well as permission to bring back anything that your surgeon doesn't use on you).

    You want your surgeon to show you want you should be doing. And then ask him what sorts of results you should expect, and how soon? So that if whatever the goal/marker is doesn't occur in the time mentioned, you will be calling back for help.

    And if you're still in pain, you should get advice on how you should be treating the pain. Healing can be inhibited if you're in pain! So you want to keep ahead of the pain, without getting out of hand. If he is reluctant to help you with the pain, ask for a referral to a palliative care doc who should be able to help you with both wound care and pain.

    HTH (and that you're feeling much better very, very soon),

    LisaAlissa

  • aggiemegs
    aggiemegs Member Posts: 146
    edited March 2016

    Thanks so much for your wealth of info and suggestions! I really appreciate it! Looking forward to my appt tomorrow. I'm so done with this awful smell!!!

  • aggiemegs
    aggiemegs Member Posts: 146
    edited March 2016

    Well, we have a plan. I will be getting a debridement tomorrow, in outpatient surgery. I'm really angry that he let it get to this point, but whatever. It is what it is. So...more surgery, then hopefully I can start healing for real

  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited March 2016

    Meghan, I am so sorry that it got this bad. I'd be angry too. It sounds like you didn't get the post-surgery checks (and treatments) you needed to make sure healing was going well.

    Does his plan include close follow-up going forward?

    Perhaps someone else has some ideas about what you should expect?

    Hope to hear that you are completely healed very soon.

    LisaAlissa

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited March 2016

    Hi aggiemegs:

    Are you in the care of a wound care specialist now? If not, please consider requesting a referral to one, who may assist in monitoring you and in proper wound care going forward.

    BarredOwl

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2016

    aggiemegs - I experienced necrosis bi-laterally, but had expanders placed at the time of my BMX. Necrosis can be slow to develop, and is notoriously slow healing, I am not sure that your surgeon could have done anything differently. Debridement should help you as removal of the dead tissue should allow healing to begin but don't be surprised if it still takes a considerable period of time. I am wondering if any Silvadene ointment has been recommended, and/or hyperbaric chamber sessions to help with healing. Eating 100g of protein a day, and taking Bromelaine and Zinc supplementally may also help with healing. You might ask about the ointment, and/or a referral to wound care that BarredOwl mentioned.

  • aggiemegs
    aggiemegs Member Posts: 146
    edited March 2016

    Lisa - I had weekly checks after surgery, and at the very first one, he mentioned that healing was going to take a bit longer than expected. At the second one, he confirmed that the skin was dying, and at the third one, we scheduled the debridement. I'm surprised that he didn't offer some kind of plan at one of the first two appointments.

    BarredOwl - I have my first follow up with my doc on Monday. I want to leave with some kind of plan to make sure it doesn't get this bad again, and hopefully some kind of ointment or cream, otherwise, I will definitely be seeking assistance from a wound care specialist.

    SpecialK - Thanks so much for the insight! I do realize it will take longer to heal, which is part of what frustrates me. I still have to do radiation once I heal, then have to wait 5-6 months til reconstruction. If this healing takes too long, it'll push my recon into next year, which means I will have to pay my out of pocket max for a third year in a row, argh!!! Also thank you for the supplement recommendations. I am taking Bromelaine already, but will most definitely look into the others. I also plan to ask for some kind of cream to help

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2016

    aggiemegs - I think neoadjuvent chemo may have influenced your healing, that is unfortunately always a danger with having surgery afterward. I would advise, even though it may push you into another yearly deductible, to consider delaying your recon, and/or going very, very slowly. If you look at my sig line you will see how much surgery I have had - of those 15, only three were unrelated to the necrosis - BMX, ALND and one fat graft.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited March 2016

    Hi aggiemegs:

    Hopefully, this will set you on a path towards healing. Sending healing energies your way.

    BarredOwl

  • KellyAnne13
    KellyAnne13 Member Posts: 63
    edited April 2016

    Aggiemegs,

    I am on the other side of necrosis and thought you might want to hear something positive. At the time of my BMX my PS did an imaging test which showed that I had almost no blood flow to the skin on my right side. He had never ever seen it so bad and decided not to put in the right TE. When I left the hospital I was given nitro cream to apply to the skin twice a day to encourage blood flow. At my first appointment it was obvious the skin was dying so I was given antibiotic cream to apply daily as well. We waited and watched and waited and watched. We figured eventually I would have to go back in to surgery to have the necrotic skin removed. We talked about areas on my body where we could use skin and we also talked about changing plans for reconstruction as he thought it might no longer be possible to insert a TE and then implants. I was pretty upset and it was pretty rough going for a while. Eventually, as the black skin came off, we began to see new skin forming underneath. It was very unexpected. I ended up having the second TE inserted in January and its almost fully inflated now. Almost ready for implants! There is is scar, yes, but not that bad considering.

    You're alive. You'll get through it. Your body will heal in time. Hang in there.

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