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Thread: Alternatives to flap surgery ??

  1. #1

    Alternatives to flap surgery ??

    Just found this site and it seems like I've found the one I've needed (sorry, been head down for awhile trying to keep my wife alive)

    I'm a 31-year veteran caregiver for my wife who is 36 years post injury from a T-4/5 complete SCI (GSW/domestic violence). We've been battling a Stage 4 ischial decubitus ulcer/pressure wound (her first Stage 4) for 3 years (as of 1 Nov). And in the midst of all that, she's survived 3 strokes, one case of sepsis and 2 UTI's. We're on Wound Center #3. We've done medi honey, wet to dry, calcium alginate, collagen matrix, negative pressure (wound vac). I've gotten fairly proficient at wound dressings (I'm tired of the wound center nurse of the week chirpping at me "no one knows this wound like you do" and then not listening to me and proceeding to screw up the dressing so that I have to redo it as soon as we get home...), wound vacs, catheter changes, bowel management, IV antibiotic infusions, transports, rehab and (not so) skilled units ... Our current wound center doc is good , but still ... At our last visit (yesterday) he wanted us to start thinking about bringing in the plastic surgeon to discuss ... flap surgery.

    To skip to the end ... we are getting nowhere (in fact, the wound recently started getting larger again) and we're both TIRED OF THIS AND WANT THIS OVER. THREE EFFING YEARS sorry to vent, but ... And the best the lab-coated, stethoscope-wearing wonders can do is continue to throw monkey poo at the wall and suggest...flap surgery. FLAP SURGERY?? Really? Is that all there is?

    Is there actual research being done somewhere that has progressed wound therapy beyond the Dark Ages? Or is flap surgery still the only game in town?

    Again, I apologize -- We've been on our own a long time and we're in need of some input from people who know long-term SCI issues because we can find no one around here who does. And I have some pent-up frustration issues (mostly related to dealing with dense medical "professionals" who only see me as a wheelchair motor -- and I've been doing their work for them a long time ...) The wound centers around here only seem to know diabetes related issues -- otherwise healthy SCI patients seem to be outside their knowledge base.

    I will gladly load her in the van and drive anywhere on the continent to get her proper care at this point -- These people here are going to kill her. I just have no idea where to take her.

    Help me, please!

  2. #2
    Senior Member pfcs49's Avatar
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    My question is why the hell did a stage IV wound stagnate for three years WITHOUT a flap surgery?
    I think you need to get your wife to people who are familiar with spinal injuries!
    Better help will be along soon. I commend your loyalty.
    69yo male T12 complete since 1995
    NW NJ

  3. #3
    Thanks for the input. We were accepting slow progress in order to avoid flap surgery ... and then ... ARE there alternatives?? And where is the center of excellence for this?
    Last edited by Stovebolt; 11-20-2019 at 08:13 PM.

  4. #4
    And as to why ... I think that would be a good question to ask her -- para to para. I will see if she will get on here herself.

    As for my loyalty ... it was part of the "in sickness and in health" part of the vow I took. I took it very seriously. I am just doing what is expected of me. Nothing more.

  5. #5
    Boy Steve, you and the wife sound what my wife and I went thru with me. Get the flap done and get it over with. I had to have one after the same years put in as you. It never closed up all the way so had to do it over again with the added 6 weeks in a clinitron bed. The six weeks go really fast. After the second one, I was rushed to emergency with an abscess under the wound site. Came really close to killing me; the er doc said he was going to try one more technique and if didn't work; let me go. They were going to release but I wouldn't let them until I had a MRI or catscan on the site. That's when they found the abscess. Once that was cleared up, I haven't had any trouble with skin breakdown at all and it healed up quickly.

    Get the flap done and get on with life. I'm 46 years post injury and this was the first episode of any kind that laid me up. Sounds like the same for your wife. Stay strong and thank God for caregivers like you.

  6. #6
    It sounds like she has an infection. Has she been checked/treated forOsteomyelitis ? That would be a step. If you are looking for an alternative to flap, look up flowable matrix. I has it done and it worked well for me.

  7. #7
    Senior Member McDuff's Avatar
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    I'm a 16yr post T10 with a wife who is a lot like you, she knows wounds better than most pro's after years of dealing with mine. Like you, she takes it in stride, but there comes a time when it's time to "cut and run" on a stage 4. I've tried all the therapies you listed and prob a bunch more I don't remember. We tried to heal them for years, but you reach a point where you say, this blows, spending my life in bed.

    Not sure what your aversion to flaps is; right now you're on an unknown timeframe, it's already been years, how much longer are you willing to invest? With a flap, you can be good to go in a couple months, that's including the "take it easy" time you have to do back at home. It's a known timeline you can count on. I wish they did have some new/better treatments for wounds, but it seems to be a very elusive devil.

    I agree with baldfatdad, get her checked for osteo, one of mine had infected bone that they had to scrape in surgery.

    It's been 16 months since my last flap, and my skin has been happy since. I also changed cushions, went from a 4" Roho quad to a Ride Design Java and it has helped a lot.

    You have definitely found the right spot to come to, there is a lot of people here with lots of experience and knowledge. Sorry y'all are going thru this, definitely one of the demons that test our mettle, good luck going forward.
    "a T10, who'd Rather be ridin'; than rollin'"

  8. #8
    Quote Originally Posted by baldfatdad View Post
    It sounds like she has an infection. Has she been checked/treated forOsteomyelitis ? That would be a step. If you are looking for an alternative to flap, look up flowable matrix. I has it done and it worked well for me.

    A stage IV pressure injury by definition exposes bone. 90% of the time, this exposed bone is infected (osteomyelitis) which must be treated before any flap is attempted. Rarely will a stage IV pressure injury heal by secondary intention (without surgery such as a flap) sufficient to resume sitting.

    Where in MD are you located? Contacting the outpatient SCI clinic at your closest large SCI rehab center can often get you a referral to the plastic surgeon who is most experienced and knowledgeable about flap surgery in your area.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  9. #9
    Senior Member CapnGimp's Avatar
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    Quote Originally Posted by SCI-Nurse View Post
    A stage IV pressure injury by definition exposes bone. 90% of the time, this exposed bone is infected (osteomyelitis) which must be treated before any flap is attempted. Rarely will a stage IV pressure injury heal by secondary intention (without surgery such as a flap) sufficient to resume sitting.

    Where in MD are you located? Contacting the outpatient SCI clinic at your closest large SCI rehab center can often get you a referral to the plastic surgeon who is most experienced and knowledgeable about flap surgery in your area.

    (KLD)
    SPOT ON!
    Dealt with a nasty stage IV almost 4 years, 2 or 3 flap surgeries and it never healed. Went to a real wound clinic,was diagnosed with osteomyelitis, had the infected bone removed, wound sewn shut, stayed until stitches were removed(7 days), went home and had a nurse come to the house for IV antibiotics for 0ne month. I was out of bed, riding in my chair within a week of arriving home, never looked back. Surgery was in 2007, no wounds since. I eat a plant based diet and avoid doctors. Get her osteo diagnosed with a KNOWLEDGABLE crew, taken care of and get her back to a normal life. Take care! ++++ ROHO cushions++++... my butt wanted me to post...

  10. #10
    agree with above
    a stage IV wound lasting over 3 years needs surgical consultation, with diagnostic work up.
    The risk of bone infection (osteomyelitis) is highly likely.
    I am so sorry that your wife has had so many medical set backs.
    She will also need to be evaluated for surgical risk with her medical co-morbidities.

    I wish you the best at finding a SCI specialist and surgeon

    pbr
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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