Recovering from My Pressure Sore by TJ Griffin

Recovering from My Pressure Sore by TJ Griffin

Posted by Community Admin on Jan 26, 2016 9:58 am

I was so excited to be getting married last June that I wanted to look my best for my bride. So of course I started eating healthy and working out. I lost 28 pounds and was looking good for my wedding. The only problem was two years before I had received a ride cushion, a cushion that is custom-made for my body. I loved the cushion and it worked great. I never had any issues with pressure sores--that was until I lost 28 pounds. Not realizing in losing the weight in my face, and most importantly my belly, I totally forgot that I was going to lose weight in my butt which would affect how I was going to sit. After losing the weight, I was bottoming out in my cushion. With no sensation, I had no idea that I had developed a small pressure sore. 
After going to the doctor, I immediately switched back to a Roho cushion. Unfortunately, my Roho was old and did not have the correct pressure everywhere, making the pressure sore worse. I finally got a new Roho with the pressure sensor to tell me the exact pressure I needed to have on my cushion. The wound was getting better so I would sit up on it. Unfortunately once I did that, it would go back to the same size. 80fe8ac1b9ab76b984a0d88457d83419-huge-tj
After months of dealing with this sore, I decided to try a wound VAC, a machine about the size of a clock radio that can hang on the back of your chair and usually holds a charge for eight hours. The wound VAC has sponges that you put on or inside your wound to bring in blood to keep the tissue healthy. In most cases you would use a wound VAC when the wound is not healing as quickly as it should be and the wound is not as healthy as it needs to be. I felt really good that the wound VAC would take care of the pressure sore. For the first 4 weeks, it was going great. In fact, the wound got down to 1 cm wide and only 2 mm deep. My doctor thought it would heal in a couple weeks. Then, because of what I like to call my “Griffin luck,” somehow I got a staph infection and in less than four days the sore went from 2 mm deep to 3 1/2 cm deep and just got worse from there. 
So after dealing with this wound for seven months, I finally decided to bite the bullet and get skin flap surgery. I went to the plastic surgeon, and he made me feel good about my decision.  He told me that once a sore gets to 3 1/2 to 4 cm deep, even if the sore heals, that area will never be as strong as it would be if I had flap surgery.  Plus, there would be a much better chance the sore would come back soon without the surgery.
On December 21, I had skin flap surgery on the right side of my buttocks.  If you're not familiar with skin flap surgery, you receive a vicious scar from the top of your hip all the way down to the inside of your thigh. Immediately after the surgery, they put me on a Clinitron bed. This is a bed made of silicone sand and has air blowing through it continuously to keep pressure off of your newly operated-on flap. I had to stay in this bed for four weeks. 
Twenty-nine days after my surgery, I finally started my seating schedule. A seating schedule or seating program is what you go by to get back into your wheelchair without damaging the newly operated-on flap. There are several different schedules out there, and your doctor will recommend one to you. For me, I sat up in bed for five minutes the first morning and then was able to do 10 minutes in the afternoon.  It's amazing that I was in bed for four weeks and as soon as I sat up, I was so dizzy because I have not done anything but lie flat for a month. After getting through the dizziness, it felt great to sit up. I could not wait for the afternoon session to do 10 minutes. The next day I got to do the same thing over again, except it was 15 minutes in the morning and 20 minutes in the afternoon. I guess you can catch onto the pattern here: every time I sit up, we increase the time by five minutes. Once I get to 30 minutes, I get to sit in my wheelchair again. I never thought I'd want to be in my wheelchair so bad, but I cannot wait. 
I've been told the seating program will last until I'm able to do four hours up in the morning, rest for an hour and then sit for four hours in the afternoon. Once I can do that for three or four days, I am back to sitting up as much as I want. I just need to be vigorous about my pressure releases, which I have to do every 15 to 20 minutes while I'm doing my seating program. Please wish me luck; hopefully I won’t have any setbacks. I will keep everyone informed on how my seating progress goes. If anybody has any questions and you're dealing with pressure sores, please reach out to me.  I've been through so much the last seven months, and I would love to talk with you to see if I can help you and guide you in anyway.
TJ Griffin
Christopher & Dana Reeve Foundation
Peer Mentor Program Coordinator

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Re: Recovering from My Pressure Sore by TJ Griffin

Posted by Vetty on Jan 26, 2016 7:36 pm

Thanks for sharing your personal experience with a pressure sore gone bad!  My brother is in the same boat and has an appointment with a plastic surgeon early next month.  Knowing what you experienced while getting the flap surgery helps me to manage my expectations on what to expect etc.  I wish you continued progress! 

Warm Wishes,


Re: Recovering from My Pressure Sore by TJ Griffin

Posted by Dan Gottlieb on Jan 27, 2016 3:59 pm

many years ago I had a pressure sore, coincidentally around the same time I felt a lot of stress (pressure) in my life. Strange how these things happen. I went to the doctor who informed me the wound needed oxygen and then he instructed me to keep it covered. "Why are we covering it", I said "don't we need oxygen from the air to help it heal?"he told me that the oxygen my wound needed was in my blood. And he went on to say that everything my wound needed to heal was in my body. All I had to do was keep the pressure off and make sure it doesn't get infected.
He went on to say that if the wound is kept clean and healthy it will heal at a rate of 1 mm a day.

I since learned that all wounds heal at a rate of 1 mm a day. Even wounds to our emotions, our broken hearts heal at 1 mm a day as long as the wound is kept clean.

As we all know, that is not true alll of the time. As a matter of fact I've had 2 surgeries-one on each cheek. And now when I get a pressure sore, I go to bed, apply the ointments I'm given and rest knowing that my body is taking care of itself. So I am comfortable resting. That is, except for the hours I just want to get outside of my skin and runaway! Of the that, I'm pretty peaceful.

I wish you the best and a very very happy marriage

Re: Recovering from My Pressure Sore by TJ Griffin

Posted by Huongque93 on May 10, 2016 11:47 pm

I finally decided to bite the bullet and get skin flap surgery. I went to the plastic surgeon, and he made me feel good about my decision.

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Re: Recovering from My Pressure Sore by TJ Griffin

Posted by Dan Gottlieb on May 11, 2016 4:58 pm

I'm so glad you made this decision. A few years ago I laid in bed off and on for a couple of months waiting for a sore to heal.and then I got skin flap surgery!so I wasted all that time.

So now you will have plenty of time to stay involved with us here at the foundation and keep us posted about how you are doing.

Take good care

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