According to Christian Kirman MD of Medscape.com, "patients with neurological impairments have pressure injuries occur with an incidence of 7-8% annually, with a lifetime risk estimated to be 25-85%. Moreover, pressure injuries are listed as the direct cause of death in 7-8% of all individuals with paraplegia; these individuals also have the highest recurrence rate (80%). In persons with spinal cord injury (SCI) and associated comorbidity, the incidence of pressure injuries is in the range of 25-66%"

Those are some really scary numbers! We interviewed three of our peer mentors about their experiences finding, getting diagnosed, caring for, and preventing their own pressure sores. Read about their experience below and learn valuable lessons about why getting a pressure sore is so detrimental to the spinal cord injury and disorder community.

1. How proactive are you about pressure relief and checking your skin?

Emmett: I’ve grown fairly proactive in pressure relieving over the last year. When I first left my inpatient stay, I was in a power wheelchair with a full recline feature. That made it easy to pressure relieve often throughout the day. I recently moved to a manual chair, and found that it is much more important for me to be proactive about pressure relieving now because I don’t spend time throughout the day reclined. As a result, I actually downloaded an app for my phone called Repeat Alarm that pops up a reminder every 20 minutes, at which point I pressure relieve for 30 seconds, and also sip a bunch of water for good measure. Furthermore, I have my PCA check my skin each morning to ensure that I don’t end up with an unexpected pressure sore.

Midge:  I am very proactive about pressure relief and having my PCAs check my skin all the time. When I'm up in my chair, I try to pressure relief every 15 to 20 minutes. My chair has a tilt mode so it makes it pretty easy to be on top of this. When I'm in my bed I have my PCAs change my position several times a day and in both the early evening and morning. I also have them check my skin for breakdown every morning as well as every evening.

Joe: My wife or PCA inspect my heel on a daily basis.

2. What is your injury level and year that you were injured?

E: I was injured in June 2018, experiencing a C5/C6 incomplete spinal cord injury due to trauma.

M: I was injured in the year 2005. My anniversary will be coming up on April 26 bringing me to 15 years with a spinal cord injury which left me a quadriplegic and in a wheelchair. It only took a few seconds of falling off a porch to change my life forever. My injury level is a C5 C6 spinal cord injury. Even though my life has changed, I have found so much hope and goodness in my world. There is life after injury.

3. What was the cause of your pressure sore? How did you notice?

E: My pressure sore was unfortunate. When discharging from inpatient, my family and I misunderstood the instructions we received on how to properly care for the inflatable Roho cushion on my loaner wheelchair- we were under the impression that the cushion pressure should be managed with me sitting in the chair, which is incorrect. As a result, we accidentally allowed the cushion to become rather underinflated almost immediately and we hadn’t yet learned a process for regularly checking my skin for problems. My outpatient therapy didn’t start for two weeks, and during that gap period I unknowingly formed a stage 2 pressure sore under my left sit bone. On my first day of outpatient therapy, my therapist immediately noticed the underinflated cushion, and checked me on the spot finding the pressure sore.

M: I believe the cause of my pressure wound was too many hours in the chair. I also believe it was caused from being on the Ride for too long. Sometimes I would be on The Ride for two hours and the shocks didn't seem to be that good. I would bump along and could feel how severe the bumps were. Even though I have a Roho cushion that's supposed to be the best, I would still bump hard with some of the roads having severe holes that have weathered with lots of rivets. My pressure wound was first noticed when I was in the hospital for one week. I believe it started there. After that it seemed to have subsided but then came back as a red mark which continued to progress as a pressure wound.

J: When I first went home after my SCI I thought I had developed a good routine to avoid pressure sores.  One day, I looked down and I thought I had a piece of tape hanging off the back of my heel...only to discover it was my heel! Unfortunately, the skin that grows back is not as strong as the skin that replaces it!  I would go on to have two more pressure sores on my heel, the last one only took two hours to manifest after my foot was stuck in the wrong position during a long drive in the car.  The heel is difficult to see, and as they say, “out of sight, out of mind.”

4. What was your first course of action? (i.e. wound clinic, doctor, visiting nurse)

E: My therapist immediately inflated the cushion, and referred me to a wound clinic. I met with that team within a week.

M: My first course of action was to make an appointment at the wound clinic. I wanted to see either the doctor or the nurse practitioner to see what I was dealing with.

5. What ended up being the diagnosis and treatment plan?

E: The diagnosis was a stage 2 pressure sore; and my treatment plan was pressure relief often, more time in bed and less in the chair, special wound care bandages and creams to be administered daily, and regular checkups with my PCP. Unfortunately, I wasn’t yet strong enough to fully pressure relieve myself even in my power wheelchair, I didn’t have sufficient PCA coverage to be transferred in and out of bed regularly, and my PCP’s office was not set up very well to accommodate a high level cervical injury like mine, which limited the effectiveness of those visits and may have actually introduced some shearing during our difficult transfers. Fortunately, I was also able to procure a turning mattress topper that helped to properly relieve pressure overnight, likely much better than having a family member turned me every few hours with pillows. But taken any sum total, the mattress topper wasn’t sufficient to offset my inability to properly meet the treatment plan throughout the day.

M: The diagnosis ended up being a stage 3 pressure wound. At that time no bone was showing with no sign of infection. The treatment plan was for me to stay in bed 22 hours a day, only getting up in my chair for two hours. When in bed I had to have the PCAs turn me on my side several times during the day and also in the early evening before I went to sleep. As far as the wound, visiting nurses would come to the house three days a week and change the bandages that were attached to a wound VAC. The wound VAC would actually promote healing tissue in the sore. 

J: I had a stage three decubitus ulcer. All my pressure sores were treated at the Wound Care Clinic at Massachusetts General Hospital. It’s important to have the right people managing your care! Pressure sores don’t always look like much to the uninitiated, but they represent the leading cause of death in people with spinal cord injuries.   

6. How long did it take to heal?

E: Unfortunately, the pressure sore actually got worse over several months, and I was forced to make the difficult decision to have surgery when it progressed through stage 3 with a dangerous condition called tunneling below the skin, and was looking like it would eventually become a stage 4 wound. Therefore, just four months after being discharged from inpatient, a plastic surgeon performed what’s known as a flap surgery on me, and I spent the subsequent four months recovering in bed. Now, nearly a year later, the surgery has fully healed and yet the skin area remains quite weak and at risk. I suspect it will be weak for the rest of my life and I will always need to use a great deal of caution to avoid another wound.

M: The pressure wound took quite a while to heal. No one can say really how long. Each person and each wound is different. My wound took several months to heal.

J: My pressure wound took almost eighteen months to heal! 

7. Has it been a problem area before?

E: Frankly, because the pressure sore developed so quickly after leaving inpatient, I didn’t have time for this area to demonstrate any recurring problems prior to the major sore. That said, I’ve learned that once a pressure sore has formed in an area, that area is always susceptible to further issues.

M:  I had a pressure wound when I was in the hospital at the beginning of my accident. Since that time several years ago, it has been a weak spot and something I have to watch constantly.

J: Sometimes, no matter how careful you are, pressure sores are an ever present nemesis for those with a spinal cord injury.  My only other pressure sore happened to my lower leg while in the hospital. A nurse had improperly wrapped my leg with an ace bandage.  It took only a few hours to create a sore that would take months to heal.

8. What are you doing to prevent another pressure sore?

E: I pressure relieve carefully now, and often. I’ve also made sure that I fully understand how to use my cushion, and have explored other potential cushions as well that require less air. I’m also extremely cautious about transferring to other surfaces without a specialized cushion surface, and will usually bring an extra cushion if I know I’ll need to be on such a surface. I also continue to have my PCA check every day to ensure that I don’t have any new sores forming, and if there is any sign of a potential sore we carefully address it with bandages and skin cream as fast as we can.

M: I try not to stay in my chair so many hours. I also try to restrict my time on The Ride. I make sure that as soon as the PCA sees any red spots that I immediately get into bed to try to prevent another breakdown. We start putting barrier cream on the red spot to try and keep it from opening up.

J: We need others to check any area of our body we can neither see nor feel.  I’ve had Roho cushions installed on the foot pads of my chair, and my wife or PCA inspect my heel on a daily basis.

9. What advice would you give to our peers?

E: No matter how strong you were, and no matter how tough your skin was prior to your injury, you must be extremely vigilant now to avoid pressure sores. I was a very active outdoors person prior to my accident, sitting and sleeping on harsh surfaces all the time. I also traveled extensively, often on six or eight flights per week in which I sat still in uncomfortable airline seats for long periods of time. What I didn’t realize is that subconsciously my body was constantly moving and adjusting to prevent pressure sores from forming. Now, with paralysis, that simply doesn’t happen and my once strong body is incredibly weak and exposed. Once you start down the pressure sore path, forever will it dominate your destiny. So be extra careful and don’t let this happen to you!

M: My advice would be to make sure you check daily to make sure to be on top of it before it breaks down. Have your PCAs look for any red spots and immediately start staying off of it for so many hours in the day. They can apply barrier cream to maybe build up a little immunity to the red spot.

If you would like to share your personal experiences with pressure wounds, please leave a comment below. To read more about the statistics given above click here to read the full article.