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Thread: Managing/living with a pressure sore rather than healing...

  1. #1

    Managing/living with a pressure sore rather than healing...

    Hello all. Hoping to hear from people with similar experience.

    I've got a t5 incomplete injury and after living with an 86 degree curvature of the spine as a teenager, I developed a grade 4 pressure sore on my right sitting bone. It was a terrible time but all of these problems were surgically rectified during a sixteen month hospital stay, which came to an end autumn 2008.

    Ever since, I have struggled with that area of skin, no matter what I do. I have spent a total of almost 5 years of my twenties on bed rest. I cannot begin to list the impact that this healed-bedrest-healed-bedrest cycle has had on every other aspect of my life. It's now to the point where it is affecting my mental health as I'm in my 30s and feel like I want to enjoy the rest of my youth and try and make something of my life. Everything I've ever started I have had to give up because of a small patch of skin on my bum. A degree, relationships, friendships, hobbies, a fledgling business... lying in a bed is also obviously not ideal for physical health either. Already I have experienced very painful kidney stones and am rather unfit.

    So. I've decided now that enough is enough. Time to accept that although this skin will heal very nicely and quickly when on bedrest it will not stay that way. During my next appointment I'm going to discuss this with my Dr. But I'd also really appreciate hearing from anyone else who has opted to try this - giving up on healing and instead maintaining a wound and preventing it from getting worse. My main concern of course is that it won't stay stable but rather deteriorate and land me right back to square one.

    Extra info: the wound itself was described last year by a tissue Viability specialist as superficial but it is a little worse since then due to a recent day spent in a&e. So it varies in severity. It does weep and I use allevyn adhesive and aquacel. I currently get up 8 hours a day but want to increase to ten. My cushion is a vicair academy vector and I pressure relieve every fifteen minutes for 30 seconds. This in itself is difficult to maintain but I use an alarm. All blood results are fine and I eat a healthy diet with extra protein. My weight.. If anything I am a little underweight but I never put any on in spite of being described as a plague of locusts!

    Sorry for the long first post but I think it's import to include the info

  2. #2
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Windsor ON Canada
    Have you ever tried electrical stimulation to heal and maintain the wound?
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

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

  3. #3
    I've seen mention of electrical stimulation helping wounds when searching forums for information. It has never been mentioned to me in the 13+years that I've been seeing tissue Viability specialists. This makes me wonder if it is perhaps not available on the NHS (I'm in the UK). I'll do some research and add it to my list of things to bring up at my next appointment. Thank you for your reply

  4. #4
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Windsor ON Canada
    lol - pretty sure it started there.

    I'm in Canada and probably same deal - they're willing to look at it IF you bring paperwork to back it up.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

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

  5. #5
    I have significant scoliosis for which I have always worn a brace. Not SCI, but I have a chronic bottom sore spot on one side which occasionally progresses to a blister (in spite of regular pressure relief). At those times my doctor recommended I spend more time lying down. About 3 days later the painful blister would go away. Last time I used a product I had never seen, a "blister band-aid", applied for 3 days, which immediately lessened pain and although sitting as usual, the blister disappeared. This Band-Aid has a cushion to it somewhat like the product Duoderm. Almost like a second skin.

    Since I have a lot of concern about where this is heading, I am soon to be seen for a wheelchair seating evaluation. I am hopeful they can recommend some kind of customized cushion for someone with pressure mainly on one side, and hopefully prevent any blister from forming. I am very active and in my chair 12+ hours a day.

  6. #6
    If weeping and won't totally heal would be concerned about osteomyelitis. Also, you are unfortunately most likely correct- if you let it worsen you will be back in the same state for treatment/intervention.
    And you should have seen a seating specialist before they got you out of bed and throughout this issue but maybe that is the issue so if you can get it rehealed and not draining then maybe new cushion would help. doyou have electronic wheelchair that can recline or can you do the weight shifts every 15 minutes and pressure reliefs q hour in your current wheelchair?

  7. #7
    Junior Member
    Join Date
    Feb 2017
    Canonsburg, PA
    TeaCupCat, Sorry to hear about your problems. I'm a C7 complete 23 years post injury and I've had recurring pressure sore issues for the past ten years. I've had three muscle flap surgeries during that time and spent the better part of those ten years either hospitalized or bed bound. I speak from experience when I say that I don't think it's a good idea to just try to live with a sore. Get it haled up as quickly as possible however you have to go about it. In the short-term it's a miserable proposition but in the long-term it's better for your overall well-being. They always deteriorate and eventually lead to much bigger problems. You could end up with a stage 4 sore, in addition to other issues like osteomyelitis. The two things I would recommend to you is, one, that you stay off of the sore as much as possible now to get it healed up. There really isn't any "magic pill" out there to help us with these issues, it's just a matter of keeping as much pressure off of it as possible for as long as possible. You should be using some type of air-fluidized bed to provide as much pressure relief as possible while you're trying to heal it up and then be using some type of alternating air mattress as a preventative sleep surface. The lack of these surfaces is where I continually ran into problems. Once you have a sore, even after it's healed, the scar tissue does not return to 100% strength so you're always working under less than optimal conditions so you need to be that much more vigilant about your prevention. I would discuss this with your doctor. Also, I would look in to using a different cushion. I had a a vicair at one point and it did not perform anywhere near what it is advertised to do. I've also heard the same complaints from many other users of this cushion. The "gold standard" for cushions is the ROHO. I would recommend you looking into one of those for your everyday use. Hope this helps. Good luck.

  8. #8
    Thanks for the replies.

    I'll add some extra info:

    This skin issue resurfaced yet again in 2015 after being fine for about three years.. The longest it has ever been OK. I spent a year on and off bedrest. You know, everytime, following the seating protocol of adding fifteen minutes at a time. I've had pressure mapping a year ago and the area in question was fine, showed as light blue. I do want to repeat this at my spinal hospital though to discuss other cushion options. I tried a roho in the past while in rehab after my surgery and unfortunately didn't get on with it. Willing to try again though.

    The skin will heal but will not stay healed. I suspect this is largely due to the area being so badly scarred from when the sore was very bad years ago. The scar is like a belly button for lack of better term. The breaking down happens at the base of this concave scar. It's a very bony area and quite an odd shape since the initial grade 4 sore plus subsequent surgery.

    I have been battling this since I was 17. This year I will be 31. I have done everything that has been recommended. I've spent literally years on bedrest. I weight shift. I pressure lift every 15 minutes. My diet is good , I'm not deficient in anything. I just need a break you know? A few years of not having to go on bedrest. There is more to life than this. The best years of my life have been spent on a bed. It's affected me mentally and I can't commit to anything as my first though is "I'll probably be on bedrest by then". It's no way to live and I've lost my patience now.

    I am going to discuss all of this at my next appointment. I was just hoping I might find a few others who have in the end given up with the goal of remaining healed and opted for maintaining instead.

    I'm going to ask for a scan to confirm there's nothing going on where the eye can't see and I would like a seating assessment with someone who specialises in SCI. But beyond that I've had enough now, hence wanting to explore living with it.

    Oh, I use a manual chair and I lift every fifteen minutes, prompted by an alarm. I hold that for 30 seconds, sometimes more.

  9. #9
    Oh, I also wanted to mention that the recurring problem doesn't behave like what I've been told to look for in a pressure sore. What I mean is that there's no reddening. It's just one day ok, the next day the skin is split and weeping. I check my skin twice to three times a day.

  10. #10
    Jdellovade, thanks fir sharing your experience. It sounds like you have similar history of spending the past ten years having your life revolve around sores. I'd like to ask you, so you feel that this is something to accept and carry on the bedrest/healed cycle? I personally have got to the point where I feel that if it's going to breakdown anyway I.may as well enjoy my life a bit for a few years and deal with the consequences later. I've been continuing to sit for 8 hrs a day and until I spent the day in a&e an bladder dramas last week, it didn't deteriorate in that time.

    Sorry for so much typing. Apparently I have a lot to say about this ha.

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