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Thread: Stage 4 Ischial Wound Ruining my Life -- Failed flap <45 days after discharge

  1. #1

    Stage 4 Ischial Wound Ruining my Life -- Failed flap <45 days after discharge

    This has been the worst year of my life, even more so than the first year post injury. It began last August with an improperly molded Ride Designs custom cushion. I'm a 30 year old T12/L1/cauda equina and am LMN in every sense of the word for most of my lower body; no spasticity, complete atrophy of all muscle, etc, etc.

    The cushion was molded without adequate depth, so I developed a small sore over my left IT from bottoming out. This wasn't my first pressure sore, but the others I had never progressed past a stage 2, maybe shallow stage 3. I also began medical school at this time. Luckily I was able to get the cushion fixed and all was well. The sore seemingly healed but simply epithelialized over the top. Over the course of 4 months, S. aureus and S. agalactiae abscessed my tissue all the way to the bone, with subsequent invasion of the ischium. I got sick multiple times during the winter but attributed it to the new and stressful life of med school. Being a type A man who powers through things didn't help either. When I started getting referred stabbing nerve pains in my superficial inguinal lymph node and noticeable lymphadenopathy, I asked my doctor whether he believed it could possibly be related to the previous sore, considering that drains the area; he said not likely.

    Fast forward to spring break, I was rushed into emergency surgery for an I&D and diagnosed septic. From there I was living with a massive wound with exposed nerve/bone/etc. Refusing to drop out, I went back to school with nurses coming to pack and clean it every morning. The following month in April fevers progressed, and I remember taking my Neuro final with 103.2F fever, leaving right after it, and going back to the hospital. Another emergency I&D followed with full septicemia, tunneling and further undermining was missed the first time. At this point I had been on IV antibiotics for 2 months.

    I somehow passed my first year of med school and had a flap surgery performed on June 1, with the goal to spend all summer healing and getting healthy for second year. I spent about 3 weeks in a Clinitron if I can remember correctly and then was transitioned to an air mattress where I began the seating protocol. After reading some of the posts here it seemed a little quick to be sitting, but I trusted this surgeon's judgement based on his extensive experience with pressure wounds. I was also weary of conducting the seating protocol in the bed, because it really did feel like a dangerous amount of pressure under my ITs, but I complied.

    I was discharged from the LTAC on July 23 and went home, ending my IV antibiotics, and happy to be able to live again. I had about a month of normal life and then began the semester. There was a small area of what seemed like darkened skin, but the surgeon said it was superficial and nothing to worry about. 4 days into the semester an area a little more medially busted open and drained an incredible amount of seemingly serous exudate. Back to the hospital I went. They conducted a FNA and sent me home with a diagnosis of seroma.

    One week later I was getting massive fevers and noticed fibrinoprurulent exudate, so back to the hospital I went. I was diagnosed septic once again, with further cultures revealing S. aureus, MRSE, and a concurrent EBSL K. pneumoniae UTI which I likely contracted in the hospital. I spent another week there and had to drop out of medical school. I'm back on IV antibiotics (Invanz) and oral Doxycycline.

    I am now back to where I started one year ago. This year has drained me emotionally and physically and forced me out of school. If I return next year I have to watch all my classmates who I developed close relationships with begin clinical rotations while I remain in the classroom with a bunch of people I've never met.

    I now have a wound vac which hasn't shown any noticeable progress, and last time I talked to my surgeon, he said we exhausted the surgical route because I don't have enough viable muscle. He utilized semitendinosus, took it out of its insertion and reflected it back to obliterate the dead space caused by the abscess. The wound is undermining about 5cm in all directions and has a bit of tunneling.

    I feel stuck, angry, and lost. I'm an athlete, studied nutrition in undergrad, and feel like my health is quite good for the state I'm in. I know the flap failure rate is high, but less than 45 days post-discharge....why!?!?

    I don't know what to do now.
    Last edited by paraparajumper; 09-23-2017 at 05:31 PM.

  2. #2
    Skin health first... As I've been told several times pre-septic and septic states will eventually get you (one time you might not survive). I actually had an ER doctor get in my face and scream "another visit in this conddition and it might take me".

  3. #3
    So sorry about your experiences with pressure injuries! Did you have tests such as MRI, CRP, sed rate, bone biopsy for culture, etc. prior to your June 1 flap to be sure that all previous osteomyelitis has been eradicated? I assume you were sitting during all the times you were trying to remain in school and manage your wound, and I agree, especially with a problematic flap procedure that sitting at 3 weeks post-op is too soon, and especially sitting on an unmapped surface like a LAL mattress, which are notorious for not providing very good pressure reduction over the ITs in the sitting position.

    All I can recommend is getting an evaluation by a different plastic surgeon who has extensive experience in reconstructive and flap surgeries in people with SCI specifically, and trying to get to do your next post-flap sitting program in an acute inpatient rehab center with a lot of experience in this as well.

    Not knowing where you live, it makes it difficult to refer you to a specialty program for this. Can you let us know on your profile your state/province and country??

    (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.

  4. #4
    Your courage and will power is incredible. Some people like me honestly just give up. What was the root cause of the mis-configured Ride cushion? It seems like that's the one thing they'd want to get right.

  5. #5
    Quote Originally Posted by SCI-Nurse View Post
    So sorry about your experiences with pressure injuries! Did you have tests such as MRI, CRP, sed rate, bone biopsy for culture, etc. prior to your June 1 flap to be sure that all previous osteomyelitis has been eradicated? I assume you were sitting during all the times you were trying to remain in school and manage your wound, and I agree, especially with a problematic flap procedure that sitting at 3 weeks post-op is too soon, and especially sitting on an unmapped surface like a LAL mattress, which are notorious for not providing very good pressure reduction over the ITs in the sitting position.

    All I can recommend is getting an evaluation by a different plastic surgeon who has extensive experience in reconstructive and flap surgeries in people with SCI specifically, and trying to get to do your next post-flap sitting program in an acute inpatient rehab center with a lot of experience in this as well.

    Not knowing where you live, it makes it difficult to refer you to a specialty program for this. Can you let us know on your profile your state/province and country??

    (KLD)
    I'm located in Colorado, about an hour and a half north of Denver. I inquired previously with Craig prior to my first flap, and they said they do not conduct flap surgeries at that hospital. The plastic surgeon who did my surgery has extensive experience with pressure ulcer reconstruction, so I don't know what happened.

    According to him I am too active. What does that mean though? I should give up living and just relegate myself to a life in bed?

  6. #6
    Quote Originally Posted by paraparaumper View Post
    According to him I am too active. What does that mean though? I should give up living and just relegate myself to a life in bed?
    Don't know what that means either. Did you ask him? While moving around on your own too much during the first few weeks after a flap can be a problem (as it often leads to hematoma formation and can cause separation of the incision), not being "too active" long after flap surgery would be inconsistent with doing sufficient weight shifts as part of your sitting program. What type of sitting program schedule did you follow?

    (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.

  7. #7
    Senior Member lynnifer's Avatar
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    Flaccid paralysis sucks for pressure sores. 33yrs post and living in bed.

    Can you do school part-time? Try a gel cushion.
    Make America Sane Again. lol

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  8. #8
    Quote Originally Posted by SCI-Nurse View Post
    Don't know what that means either. Did you ask him? While moving around on your own too much during the first few weeks after a flap can be a problem (as it often leads to hematoma formation and can cause separation of the incision), not being "too active" long after flap surgery would be inconsistent with doing sufficient weight shifts as part of your sitting program. What type of sitting program schedule did you follow?

    (KLD)
    The last thing I wanted to do was compromise the flap. I did my research and I was aware of the fail rate. I was so compliant with everything said, conducting my seating protocol to the T, not one minute over, etc, etc. He said the part that fails often was the incision. My incision was beautiful, he did a great job and it healed unbelievably quickly. In some areas it's almost completely invisible and the nurses couldn't find it; there wasn't a single problem with the surgical site. Attached is the flap and seating protocol we used.

    My cushion is a Ride Design Custom. I literally have 0 pressure beneath my ITs when I'm in my chair, they are floating in air.

    Quote Originally Posted by lynnifer View Post
    Flaccid paralysis sucks for pressure sores. 33yrs post and living in bed.

    Can you do school part-time? Try a gel cushion.
    Unfortunately, medical school is not something you can do part-time.
    Attached Files Attached Files

  9. #9
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Location
    Windsor ON Canada
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    18,406
    So the ADA does not apply to med school? No courses to take online?
    Make America Sane Again. lol

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  10. #10
    Senior Member darty's Avatar
    Join Date
    Aug 2004
    Location
    Las Vegas, NV
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    1,188
    Quote Originally Posted by paraparaumper View Post
    This has been the worst year of my life, even more so than the first year post injury. It began last August with an improperly molded Ride Designs custom cushion. I'm a 30 year old T12/L1/cauda equina and am LMN in every sense of the word for most of my lower body; no spasticity, complete atrophy of all muscle, etc, etc.

    The cushion was molded without adequate depth, so I developed a small sore over my left IT from bottoming out. This wasn't my first pressure sore, but the others I had never progressed past a stage 2, maybe shallow stage 3. I also began medical school at this time. Luckily I was able to get the cushion fixed and all was well. The sore seemingly healed but simply epithelialized over the top. Over the course of 4 months, S. aureus and S. agalactiae abscessed my tissue all the way to the bone, with subsequent invasion of the ischium. I got sick multiple times during the winter but attributed it to the new and stressful life of med school. Being a type A man who powers through things didn't help either. When I started getting referred stabbing nerve pains in my superficial inguinal lymph node and noticeable lymphadenopathy, I asked my doctor whether he believed it could possibly be related to the previous sore, considering that drains the area; he said not likely.

    Fast forward to spring break, I was rushed into emergency surgery for an I&D and diagnosed septic. From there I was living with a massive wound with exposed nerve/bone/etc. Refusing to drop out, I went back to school with nurses coming to pack and clean it every morning. The following month in April fevers progressed, and I remember taking my Neuro final with 103.2F fever, leaving right after it, and going back to the hospital. Another emergency I&D followed with full septicemia, tunneling and further undermining was missed the first time. At this point I had been on IV antibiotics for 2 months.

    I somehow passed my first year of med school and had a flap surgery performed on June 1, with the goal to spend all summer healing and getting healthy for second year. I spent about 3 weeks in a Clinitron if I can remember correctly and then was transitioned to an air mattress where I began the seating protocol. After reading some of the posts here it seemed a little quick to be sitting, but I trusted this surgeon's judgement based on his extensive experience with pressure wounds. I was also weary of conducting the seating protocol in the bed, because it really did feel like a dangerous amount of pressure under my ITs, but I complied.

    I was discharged from the LTAC on July 23 and went home, ending my IV antibiotics, and happy to be able to live again. I had about a month of normal life and then began the semester. There was a small area of what seemed like darkened skin, but the surgeon said it was superficial and nothing to worry about. 4 days into the semester an area a little more medially busted open and drained an incredible amount of seemingly serous exudate. Back to the hospital I went. They conducted a FNA and sent me home with a diagnosis of seroma.

    One week later I was getting massive fevers and noticed fibrinoprurulent exudate, so back to the hospital I went. I was diagnosed septic once again, with further cultures revealing S. aureus, MRSE, and a concurrent EBSL K. pneumoniae UTI which I likely contracted in the hospital. I spent another week there and had to drop out of medical school. I'm back on IV antibiotics (Invanz) and oral Doxycycline.

    I am now back to where I started one year ago. This year has drained me emotionally and physically and forced me out of school. If I return next year I have to watch all my classmates who I developed close relationships with begin clinical rotations while I remain in the classroom with a bunch of people I've never met.

    I now have a wound vac which hasn't shown any noticeable progress, and last time I talked to my surgeon, he said we exhausted the surgical route because I don't have enough viable muscle. He utilized semitendinosus, took it out of its insertion and reflected it back to obliterate the dead space caused by the abscess. The wound is undermining about 5cm in all directions and has a bit of tunneling.

    I feel stuck, angry, and lost. I'm an athlete, studied nutrition in undergrad, and feel like my health is quite good for the state I'm in. I know the flap failure rate is high, but less than 45 days post-discharge....why!?!?

    I don't know what to do now.
    I'm just going to throw in my .02 and you can take it or leave it. I have been injured C4-C5 complete Quad for 37 years so I understand a lot of your frustration and have suffered many of the same complications as you. First of all Doctors either well intended or driven by money can't fix everything. If that were the case we would all be walking, the blind could see and we would live for ever. Don't even get me started on wound clinics and what they do. I have been to wound clinics all over this country some better than others but none have the perfect solution for everyone. You can be as diligent as you want follow their instructions to the letter and still not be helped by them. I have been treated with oral antibiotics, IV antibiotics (from cultures and for Osteo), debridement after debridement, surgery (at least 5 of them), flaps, wound dressings (I have tried them all), wound vac (several times), bed rest for months on end, nutrition, hydration, medical honey, I'm sure I am forgetting a few. So whats missing?

    "A new normal" something has to change, the medical field with all they can do are guided by textbook procedures and the status quo. When you get sick or injured their goal is to return us to "normal". It's a given that what is "normal" for us is not "normal" for the AB community. Our "new normal" started the day our injury, sickness put us n a wheelchair and living life from a wheelchair is not "normal".

    You have to find someone who does or think outside the box yourself and address your problems step by step. It's very hard for someone else to do this for you they don't live your life and can only observe so much from the outside. You need to evaluate your life from morning till night, bed, cushion, chair, degree of dump in your chair, pressure reliefs, transfers, sheering, tilt in your chair and everything in between. Your "normal" every day has to change, what you are doing, hours you are sitting, laying in bed are killing you. I know it sucks but you have to change either some things or everything about how you are living, what you are doing now is not working.

    My .02
    ^^(A)^^

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