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    #31
    I have been battling a number of pressure sores above both ankles. Exacerbating these is a severe case of psoriasis that I have had for more than 30 years. Here in Dallas, we are fortunate to have a world-class psoriasis clinic and research facility. Dr. Alan Menter, who is on the science committee of the National Psoriasis Association, says that until the psoriasis on my legs is under control, there is no way for the skin sores (which are in contact with the severe psoriasis on my legs) to heal. My employed caregivers who dress these sores twice a day and see this very clearly. Whenever a chunk of psoriasis breaks off, a new sore appears.

    Dr. Menter has prescribed a biologic injectable medicine known as Humira. I get an injection every 2 weeks, and he told me to use a topical cream called Cedaphile very liberally.

    Meanwhile, my wound care doctors refuse to acknowledge any effect of the psoriasis on my sores. They are convinced it is all due to pressure, and are pressuring me into obtaining a Clintron bed, despite the fact I have produced photographs of my legs suspended by pillows in such a manner that there is no contact of my sores with any part of my air mattress bed. The surgeon keeps asking me when I'm ready to give up and have my feet amputated.

    I am in the process of humoring my doctors and ordering one of these Clintron beds for my home. Of course, there's no way that one of these behemoth, expensive monstrosities will do anything for my psoriasis.

    Comment


      #32
      Originally posted by Don D. 73 View Post
      a severe case of psoriasis ...
      There seems to be alot of buzz on the web for Serrapeptase or Bromelain relieving psoriasis.
      "Let your food be your medicine" - Hippocrates

      Comment


        #33
        Ok, I'm almost 6 yrs post and a walking quad, never had a prob with sores until I lost weight. Now I've been getting what I believe is the beginning of a sore at the top of my crack just from sitting at my desk at work and my wheelchair at home when I use my computer. The sore is not deep, I'm not even sure exactly how to explain it, just the top layer of skin gone and very dry. Never having dealt with these before I have no clue what to do. Do I need to see the dr? Do I treat it myself? With what? I do use a cushion in my wheelchair at home, but as I'm a walking quad they just gave me a foam one even though I have very little sensation in my bottom. What is the best way to deal with this sore before it gets even worse?

        Thanks!
        Tina
        C5-C7 Walking Quad - Very Incomplete
        Aug '03

        Comment


          #34
          Unless you sit in a very slumped posture in your chair, pressure ulcers at the top of the crack (coccyx and sacrum) are rarely due to sitting, but much more likely to be laying down pressure ulcers...either from a too hard mattress or sitting up in bed with the head of the bed raised over 30 degrees too much. What do you sleep on? How often do you turn? Do you prone at night?

          It is best to see a wound specialist (nurse or physician) for any pressure ulcers so it can be properly assessed and the proper treated started early.

          (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.

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            #35
            I only sleep on my sides, never my back, and still wake up on my own every 2 hours to turn over. I guess I do just sit slumped down in the chair. My core muscles are still very weak and it is hard for me to hold myself up for long periods of time. This sore started while I was on vacation and sitting outside on a wrought iron patio chair without a cushion. Once I realized I had it, I started sitting on a pillow. I will call my physiatrist and see what she wants me to do. Thanks!
            Tina
            C5-C7 Walking Quad - Very Incomplete
            Aug '03

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              #36
              good cream/ointment for moisture barrier?

              OK, pressure areas all clear. My son's now using Medline's Remedy skin protectant as a general purpose cream -- wound care nurse recommended it.

              Is there a good product to use when participating in sports? Something to act as a moisture barrier?

              Also any tips on preventing ischial sores/spots? He does the weight shifts, has a good gel cushion (got a new one for the sport chair -- that is what caused previous problems), plus he is standing quite a bit.
              Ugh, I've been kissed by a dog!
              Get some hot water, get some iodine ...
              -- Lucy VanPelt

              Comment


                #37
                Ride Forward Cushion

                Originally posted by fullsyz View Post
                Thanks for the advice guys, I'm listening. Question....Anyone have any experience with Ride Designs Cushions?
                I use the Ride Forward and love it. I had a pressure mapping done at rehab using multiple cushions and the Ride Forward was the best. It also helps me sit up straighter. I have been using it for about 8 months and have not had any problems.

                Comment


                  #38
                  Avoiding pressure sores ideas?

                  I'm a C-6 quad that's roughly 17 years post injury and i've never had a pressure sore beyond a very tiny one on my butt bone that i got during a hospital stay after acid reflux surgery about 5 years ago, but it healed quickly. Since i've avoided them, this may sound like a dumb question, but is there special things i need to do as i get older to keep avoiding them?

                  I ask because when i read stories on here about pressure sores gone bad, it seems like an absolutely miserable thing to go through over a long time to heal. The thing is though, i don't really know why i never get pressure sores compared to those of you who do get them?

                  I got injured at age 21 and am now 38. I've always had a high metabolism, so as you can guess, i got quite skinny from being paralyzed. My butt is pretty much just skin/bones and has been for awhile. I don't sleep on some ultra expensive bed to protect my skin, just a regular mattress with one of those 50 dollars foam egg crate covers on top of the mattress. My chair cushion is a roughly 6-7 year old Invacare cushion. I do quite a bit of transfers myself, in/out of bed, in/out of cars, off/on my shower bench.

                  So any idea why i never get pressure sores, but so many others do? I've always made a point to do plenty of butt lifts each day, but that's about it. My diet consists largely of, what tastes good to me. Should i be worried though that i'm nearly 40 and pressure sores likely will come if i do things as i always have? Have others been like me, paralyzed young and went a very long time with no pressure sores, but even with doing things the same, age caused pressure sores?

                  Basically, many of these pressure sore stories i read on here are pretty terrifying and i obviously want no part of them. Maybe if i just keep living/doing things as i have since getting hurt, i'll continue avoiding these miserable sores, i'd simply rather be as sure as possible though. So if there are any special tricks, methods, or things that people have used to keep avoiding them or things in retrospect that folks with sores regret not doing, i'd love to hear them because i can't fathom how miserable i'd be to be bed bound for many months or even longer. I think i'd go crazy after only one week.

                  Comment


                    #39
                    stuck in bed

                    Well I am stuck in bed with a sore on my butt reading this thread getting a lot of good info,,
                    Florida heat hits me hard every few years if I dont watch out..I have a very small spot about the size if a pencil eraser , not deep or bleeding just started getting a little wet in the area. Starts off like white flaking on the skin then this one has not gone away as fast as others but I have been working out in the 90 degree heat for the last few weeks..
                    I went out and got the bag balm for my other side that has no problems and started that, I also have a heat rash in and around my crotch which I have most of the time but use Nystatin cream and it calms down quick..
                    ALSO last week I got a burn from a leaky coffee cup on the side of my left leg that caused a big blister , no where near my butt , but keeps me off of my left side and the spot is on my right butt cheek,,,,
                    Really not used to being on my stomach most of the day..
                    I have read most of the posts here and have not found what to put on a sore to heal it , mostley prevention but that is the thread name prevention.
                    What do you put on the sore, keep it dry? Cover with a bandage with duo derm? A Little help please would be appreciated..
                    Sorry for the mile long post but laying here with nothin to do is making me stirr crazy..
                    Gary
                    T-10 ,,1980,,

                    Comment


                      #40
                      Nystop powder is good if you sweat a lot or have possible moisture issues. Your doctor prescribes it.

                      If you have a rash, creamy Desitin works good to clear it up.

                      If you have a open sore, Johnson & Johnson makes a product called "Prisma", it is a wafer. The wafer turns in to gel, and in turn creates skin cells. You'll be amazed how quickly it heals.

                      Try to take all pressure off the wound and keep it clean.

                      Always Consult a doctor first, even if you think their clueless! Just to get a professional "opinion" is best. They might suprise you.

                      Comment


                        #41
                        HUGE HUGE HUGE!!! I wish I could bold this whole post!!

                        Desitin has saved my ass (actually my crotch) after coming out of the hospital after a few days.
                        I can't sing the praises of it enough. (Just keep it away from your anus, trust me)

                        Awesome Liz!

                        Originally posted by Lizbv View Post
                        Nystop powder is good if you sweat a lot or have possible moisture issues. Your doctor prescribes it.

                        If you have a rash, creamy Desitin works good to clear it up.

                        If you have a open sore, Johnson & Johnson makes a product called "Prisma", it is a wafer. The wafer turns in to gel, and in turn creates skin cells. You'll be amazed how quickly it heals.

                        Try to take all pressure off the wound and keep it clean.

                        Always Consult a doctor first, even if you think their clueless! Just to get a professional "opinion" is best. They might suprise you.
                        And the truth shall set you free.

                        Comment


                          #42
                          Thanks Lizbv and no decaf,
                          I had never heard of that wafer Prizma either , I have an appointment on Monday , that was as fast as they could get me in to the wound care clinic at the hospiitol.
                          I spoke to the administrator and she said that they have quite a few SCI people that they have helped, I will mention the Prizma pads as well..
                          Also I tried the desitin ointment on the rash and it is almost gone after just 2 days,I have not been putting anything on the sore yet, they want to see me before they advise anything,I will call around to see if I can get some unless it is prescription only..
                          Also I used to get in the pool every few days in the summer and that really kept dead skin and rashes down, I wonder if I should go in the pool now or not ,the soaking and chlorine always kept rashes a problems away I just have not been in in awhile..
                          Thanks For Info
                          Gary
                          T-10 ,,1980,,

                          Comment


                            #43
                            Chlorophyll Ointment - GREAT STUFF FOR SORES!!

                            I've gotten so much useful info from this site over the years. Now, it's my turn to contribute something.
                            I've had scar tissue on my butt break down 3 times now over the last 5 years. Each time, it takes weeks or months of laying around trying to stay off my butt it until it finally heals.

                            I HATE LYING around!

                            I love my doc. He's been a conventional family practitioner for 30 years and is slowing becoming more and more holistic in his approach. He says he has seen how well natural treatments work in his patients over the years - that's why he's changing his approach.

                            He suggested I use Chlorophyll ointment on my sore. He said it would help with new skin growth, to fill in the sore. It can be applying directly to the sore.

                            I started using it a week ago and I'm tellin ya, THIS STUFF REALLY WORKS!!

                            It's called Chlorophyll Complex Ointment made by Standard Process

                            Good luck!

                            Comment


                              #44
                              Another good wound healer medicine called Santyl. It debrides the wound and acts an enzyme. It works by helping to break up and remove dead skin and tissue. This effect may also help antibiotics to work better and speed up the healing process.

                              I wanted to add about the Prisma that it's best in an area that is moist or open skin (like after washing it with soap and water, or being in the shower), then it will turn into a gel. If a scab forms, it's best to have it removed and the Prisma will work better. If anybody wants to try Prisma, I can send you a wafer.


                              GaryV, how did your appointment go?
                              Last edited by Lizbv; 28 Jul 2009, 1:17 PM.

                              Comment


                                #45
                                Liz,
                                the sore looks like it got a little bigger after the duo derm but I think it just looks that way now because the top came off of it with the duo derm,,
                                they said it looked good and might be a few weeks to heal, I have to go in every week until healed..they said stage 2 but just throught the top layer and not too deep.So stuck in bed for 2 or 3 weeks it looks like..Also I asked them about prisma and they say it works great but that my sore was not deep enough to use it .they just recomend duoderm changed when needed and that it looked more like i hit it than from pressure...
                                Thanks
                                Gary
                                T-10 ,,1980,,

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