Flynn Chivers

I didn’t know anything about NF when I contracted it a few days after my 62nd birthday. I received a shot at a doctor’s office at 9AM that morning and had excruciating pain in my right shoulder by 9PM THAT NIGHT. My wife drove me to emergency room about midnight with worsening pain. As appears to be the unfortunate norm, the ER doctor misdiagnosed it as a probable rotator cuff tear, even though both my wife and myself told him repeatedly that I had not injured my shoulder in any way. In fact, when the nurse asked the doctor if he wanted blood work done, the very thing that would have given him a chance of diagnosing it correctly, the very arrogant doctor said, “no, it is a rotator cuff tear.”
The next day, as instructed, I made an appointment to have an MRI on my shoulder. I could not get an appointment until 3 full days later. The morning after the intense pain started in my shoulder, and felt like everything in the shoulder had been welded together. I could not move it at all. I am very active, and have dealt with a number of injuries over the years. I knew it was not a rotator cuff tear, so I made an appointment at our local clinic for the following day. The next day when I got out of the shower, I noticed that my arm had turned bright red down to my elbow. My arm had also begun to swell significantly. The PA that saw me felt that I might have cellulitis, and prescribed a oral antibiotic.
Of course my condition worsened, and I finally had the MRI done the following evening. They had to force my arm and shoulder into a dive to pull my arm away from my body. I had tears running down my face as I tried to hold still in the tunnel. I was pretty much out of it on the ride home, but my wife had the presence of mind to realize that it might be days before we heard from the doctor appointed to read my MRI. She contacted our neighbor who is a radiologist, and asked him to look at my MRI. He called a few hours later and said that their was no rotator cuff tear, but my shoulder has “very angry about something.” He instructed us to return to the clinic and tell them there was no rotator cuff tear.
On my return trip to the clinic, the doctor said that I had some kind of infection. He gave me a shot of antibiotic, and told me if my arm didn’t show improvement by that evening, or the next morning, I might want to go to the ER and get some IV antibiotics started. I had now been misdiagnosed three times and I was 4.5 days into my necrotizing fasciitis infection. Then a miracle happened. Our neighbor doctor called my cell phone and asked what the doctor had told me and about how my arm was feeling. I was still in the doctor’s office and when my neighbor heard my condition was not improving, he told me to the hospital immediately and get started on IV antibiotics. When I arrived and the doctor in the emergency room saw my blood work, he put me on very heavy duty IV antibiotics. I was blessed that the antibiotics began to work. I had not gone septic somehow after almost 5 days of allowing the bacteria to run rampant in my body,
I had to have a fasciotomy, and have tissue removed, but again, miraculously did not loose my arm. I have been doing Physical Therapy twice daily for the past couple of weeks. I am not seeing much progress with being able to lift my arm, but I am hopeful and abundantly grateful to have it.
These days I am very emotional and have a lot of worry about getting it again, or someone I know getting this terrible disease.