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!
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!
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