Several years after my accident I started to notice constant red marks on my tailbone area. Some months the redness would open up into a stage 2 pressure sore and start bleeding. I would then have to spend the next month or two in bed, and then I would get back up. This pattern persisted for about two straight years. I was on the right mattress, weight shifting constantly, and did not spend too many hours up in my chair. I simply couldn’t figure out what was going wrong.
When I move back to the United States in 2015 from China things went sideways. Several months after returning to Raleigh, North Carolina the red small pressure sore came back with a vengeance and opened up all the way down to the subcutaneous fat level over my tailbone “coccyx” area. I would maybe get up for an hour or two a day, but I was pretty much bed bound. I had five different wound doctors, but I was getting nowhere.
Based on Einstein’s definition of insanity, I kept doing the same thing over and over expecting different results. So, I did the only logical thing I could think of. I fired them all. I found a highly skilled plastic surgeon and went to go see him in December 2015. He took one look at my pressure sore, at this point it was practically a whole in my backside, and he told me that I was born with an extra vertebrae in my tailbone. Seriously, that’s it! One extra little vertebrae combined with lack of blood flow from spinal cord injury, loss of muscle mass from being paralyzed, and voilà … The perfect environment was created for my tailbone to push from the inside of my body out.
It turns out I was doing nothing wrong, but it was an internal skeletal structure issue. The surgeons fix was to perform a surgery called a “Coccygectomy.” The surgeon was proposing on shaving my tailbone down and sewing me right back up. He wanted to schedule me for surgery the week later and I most happily agreed!
I rolled in for surgery in January 2016 and was on top of the world because I finally thought my problems would be over. Little did I know, this was just the beginning. Several weeks after surgery I noticed that the stitches started to turn black and I was bleeding from the surgery site. I immediately rushed to the surgeon by ambulance. He casually mentioned that it might have been a good idea to put a drainage tube in after the surgery … I looked at him cross eyed and was wondering how he could say this so nonchalantly to me. It turns out that I was bleeding back into my body.
This is where my heart sank … He proceeded to cut open the stitches and ever so calmly stated “Well, I can feel that I shaved your tailbone down very well.” I’m not sure if I was in shock or just could not comprehend what he was saying. What it sounded like, to me, was that he had his finger inside my body feeling my actual tailbone. If this was true then I would’ve had to have a giant hole in my body.
I was correct … His hand was literally inside my body. When he cut open the stitches the wound popped open and I went from having a stage 3 pressure sore down to a stage 4 pressure sore (a pressure sore that is down to the bone). Somehow in three weeks and after one surgery down I moved backwards!
I asked the surgeon what the next course of action would be and he told me that I needed to stay in bed until it heals. I had not done much research on a stage 4 pressure sores yet because I simply did not think it could happen to me. I had always believed if somebody let a pressure sore get down to the bone they must not have been taking care of themselves. Boy, was I completely, totally, and utterly wrong!
I went home in shock and started a copious amount of research! This brings me to my next story on the following surgery for this pressure sore.