The plan was one night in ICU and then they would send me home. Day two in ICU and I still couldn’t eat because I felt so sick. Sadly, they wouldn’t let me leave until I could eat. Come to find out, they wrapped my head bandage so tight, it was making me ill. Later that day I was able to eat and walk a little bit with the help of a walker. I was released the next day with a walker to use at home.
My neurosurgeon’s nurse practitioner discharged me with instructions to head to the ER if there was any swelling or fever. This is a sign of infection and the implants would need to be removed ASAP to avoid an infection in the brain. A round of intravenous antibiotics would have to be administered. Six weeks later, the surgery could be redone.
Later that evening at home, swelling started at the incision and within a few hours it started moving down my forehead. We started to worry and off to the emergency room we went.
I soon found out that doctors who are new to dystonia find me interesting. Of course, they want to know my symptoms that led to DBS surgery, what meds do I take, how the injections are helping, etc. I would answer their questions and quickly get us back on topic – do I have an infection?
They ordered a CT scan with contrast. I again asked – will that identify an infection? We asked for someone from neurology that was on call.
Word must have spread about me and before you know it, I had four or five different doctors swing by and ask me almost the same questions. Every single one of them tried giving me the simple neurological exam – blink, make a fist and open it…I finally quit obliging. THIS HAS NOTHING TO DO WITH AN INFECTION
They sent in a nurse in training to give me an IV catheter. Well, she botched it and I started bleeding.
Almost two hours later but luckily before the CT scan, someone from neurology stopped by. After a quick look, she was able to tell us that there was no infection. She explained it was drainage from surgery and to expect it to get worse before it gets better. She actually told us what to expect. Kurt was so mad that he offloaded about the poor communication of the nurse practitioner. I’m glad to report it was addressed with her.
I was beyond tired and ready to crawl into bed. I was relieved when we pulled into the garage. Unfortunately, when I was getting out of the car, I hit my incision right on the door jam. It sent pain through my whole body and I almost threw up. Now I needed to be worried about an infection.
Me Myself and My Dystonia 