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    To SCI nurse (or anyone else) - I do have one more more question. My primary care doctor tells me it is ok to keep sitting on the pressure sore since it doesn't look very bad.

    I know I need to stay in bed until I can't see the sore any more. (This is correct, right? It's certainly what I was taught in rehab.)

    Can you point me to a resource I can show her to confirm that I must stay off the area until it is fully healed so she can help support my decision to stay off it until it is healed?
    Last edited by wisci; 19 Jul 2021, 9:40 AM. Reason: I made a few details a little less specific for privacy. I didn't change anything that substantively alters the post, so I think it would still be just as useful if anyone else were to see it in the


      Most physicians know little or nothing about pressure injury prevention or management. If you have a stage I that is not blanching, or a DTI that has not resolved, you should NOT be sitting on it. A good rule of thumb for a stage 1 is that you stay off of the area for the same amount of time it took for the area to return to normal appearance. So if it took a week of bedrest to fade, you need to stay off it for another week. Do you have a physiatrist or other rehab physician or a wound care clinic you have worked with who can provide you with the medical excuse from work?

      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.


        About a rehab physician--the local rehab clinic told me that since it's been more than a year since I was seen there, I would first need a new patient evaluation, which isn't available for a long time. The nurse spoke with me and was kind and as helpful as she could be, and she said it would have been no problem to see me right away if I had been seen by their doctor within the past year, but it's clear I am not considered a current patient there right now.

        I also have submitted an appointment request form at Froedtert and I have a call in at Shirley Ryan to see if either of them could see me soon about the pressure sore, but I'm not feeling hopeful. I am however in the process of scheduling a seating evaluation with pressure mapping with Froedtert--many thanks for SCI Nurse's advice on that.

        So that's it for rehab physicians. You also ask if I have worked with a wound care clinic. My doctor referred me to one, but they called me and canceled my appointment because my sore isn't bad enough--they don't want to see me until it is an open wound. I asked for advice about finding another place I could get knowledgeable help but they doesn't have any ideas for me.

        As for your comment about healing sores: I'm pretty sure this is stage 1--it's about a centimeter in diameter, light pink in color (I have white skin), and no broken skin. As for whether it blanches, I'm sure this sounds strange but I'm not certain. It usually kind of lightens but not all the way to skin color when I press it and then release, though sometimes it doesn't seem to have blanched at all and sometimes it appears to definitely blanch. If I press my finger to the skin and pull it across the area it goes to skin color but instantly returns to pink--I'm hoping that means good blood flow. There is a small but noticeable skin-colored bump in the middle of the pink area. So far the sore looks exactly the same every day with no worsening or improvement.

        My general practice doctor felt sure after looking at it and feeling it that there isn't currently deep tissue damage and rehab clinic nurse on the phone felt encouraged that the GP felt it wasn't bad, but I'm not sure my doctor has much familiarity with the needs of SCI patients with regard to pressure sores.

        I have tried everything I can think of to find someone with expertise in pressure sores to look at it and so far have not been successful. It has been terribly frustrating. I'm on day 5 of bed rest and the sore still looks quite minor but hasn't changed at all, whereas sources I can find online say you would expect such a small spot that is barely discolored and often blanches should resolve in a few days. I never imagined I would be completely unable to get an appointment for something like this.
        Last edited by wisci; 19 Jul 2021, 9:56 AM.