I'll explain my situation so that way you know what happened, where I've been, and who I've seen.
I am a C-5, C-6 quadriplegic and have been paralyzed since September 99. Back in December 06, my parents noticed several small tiny holes. They started getting bigger, and it looked like a sore was starting. At first my local doctor thought it was an infection, so they tried antibiotics and medicine but after that didn't work it was getting worse. So, on New Year's eve I went to the hospital where they opened the wound more in order to debris it. I stayed overnight, they gave me some antibiotics through an IV, and were changing my bandage. The next day they released me and I had a program where the nurse would come to my house three times a week to monitor the wound and change the bandage.
So, that was the plan. Then about 3 weeks later when I was in rehab getting therapy for my shoulder and when I was transferred, my knee broke with a hairline fracture. So, I now had the sore and on top of that my legs were elevated all day with a cast from about mid-January until late April.
Throughout the care that I received from the nurses that came to check on the sore, they constantly said it was getting smaller. So, we kept the routine. Then I went back to the hospital in late March because I thought I was getting a second sore. They said it didn't look like I was getting another one, but they recommended that since the sore wasn't healing that I see a surgeon about the wound.
In early April I went to see a surgeon, and he said that although the wound looks close to healing it is actually bigger inside than what it looks like, and that they were going to have to do surgery on it. He was more towards using a vac system or he said he would open it up and put stuff in there to heal it and then sew it close. He said if these two options failed, I would have to get a flap done. So, I was set for surgery in mid April.
The day before my surgery I went to go see a doctor I trusted a lot, just to get a second opinion. After looking at the wound he suggested that although the vac system would probably heal the wound, he said that the scar tissue would be weak and would just reopen again sooner or later. So, his recommendation was that I go see a plastic surgeon and get a flap done.
By this time the nurse had stopped coming because their prescription had run out, and we were going towards a surgery route anyways. *Also my parents could change the bandages better than them.
So, I went to see a plastic surgeon down at Thomas Jefferson University. His recommendation was that he would probably opt more towards a vac system rather than a flap, but first wanted to get an MRI of my pelvis to see if the bone was infected.
I got the MRI and when I went back to visit him, he said that the bone was infected, and would probably have to be removed. So, he told me to meet with an orthopedic surgeon, which I have an appointment to meet with him on the 29th. He works at the Rothman Institute. He said that because the bone is infected I would need to get the flap done and that an orthopedic surgeon needs to be in the operating room to deal with the bone.
I feel very fortunate because had I not gotten that second opinion and canceled my surgery and then saw the plastic surgeon, I would have never of known that my bone was infected; however, he told me about the consequences of the surgery if the bone is removed.
After the surgery I would be in bed for about a month on a clinitron sand bed, then from there I would go to a rehab facility. If the bone is removed I would then be sitting lower on my right side where the infection is then I would be on my left, and therefore my left side will now be prone to a pressure sore.
I'll know more about whether or not the bone can be saved after I meet with the orthopedic surgeon.
What I do want to know though is if anybody has had these problems and surgeries. I want to know if I am going in the right direction. I'm extremely nervous about this operation because I know that Christopher Reeve died from a pressure sore that got infected.
I don't know how I got this sore because I do so much physical activity weekly like the standing machine, weightlifting, pressurized boots, and am constantly being moved around. I'll never understand it!
If anybody can help me with any information, it will be greatly appreciated.