Wednesday, September 12, 2012
It has been a couple of months since my last update... And there is some reason to post now, so here it goes.
Since my last update, things had been going fairly well. And before I get to the issues, A couple of positive highlights...
* I have been able to sit at the computer for a few hours and test drive my ability to function as an artist again. It has helped me feel a hell of a lot more like myself. I quickly realized I still have limitations, but it was a start.
* I have been able to start reading books again! So many in the backlog. I get pretty bad nausea and vertigo when I turn the pages or my eyes jump from the bottom of one page to the top of the other, so I am not reading quite as fast as I used to...but if I pace myself, I can get through it without the extreme pain I was in before.
*If all goes well regarding "The Ugly" section...I'm looking forward to attempting additional daily exercise in an attempt to regain a level of health I'm more comfortable with.
So, starting around the 4th of July... Monsoon season hit pretty hard here in the desert. It was around that time I discovered that my Stimulation was no match for Barometric pressure. I had some of the most brutal headaches of the past few years, and definitely the worst since surgery. Basically, storms put me on my ass and there was nothing that could be done about it. So, as long as the weather was clear, I was doing alright.
As I mentioned...aside from storms, I also learned that the stim doesn't help when a good ol' fashioned Migraine headache hits. The ones I've known since my teen years. The no lights, no sound, no movement, no talking type. Just a dark room, an ice-pack, and my pain. I get one every few weeks and they don't respond to abortive drugs. The good news is, I had luck in the past with a preventive drug which I plan on possibly resuming given the H.C. was being fairly well controlled by my stim. The only reason this hasn't happened yet is because scheduling with him is currently a couple of months out, and I had to cancel my last appointment at the last minute due to scheduling conflicts and transportation.
For a couple of weeks, the leads in the back of my head started feeling...odd. There was a very obvious coil that suddenly starting feeling bulging and uncomfortable.
This past Saturday, I was hanging some clothes in my closet when I felt a very slight popping sensation in the back of my head and suddenly my stimulation was in a different location (At the base of my head near my neck at the exact center of my head under the original incision spot) and it was very painful with every movement of my head akin to a tattoo machine. So, I quickly retrieved my programmer and began testing and to the best of my knowledge, the bottom lead (The most effective one recently) has dislodged and migrated. I switched to a program utilizing the top lead only (Which is neither all that effective or pleasant) and contacted my St. Jude rep.
She suggested the first step should be an appointment with her to reprogram and see if we can "recover the stimulation" by I'm assuming moving the stimulation to points on a different area of the lead that may still be in a good spot.
She said they would probably order and X-ray and go from there.
From the folks I've talked to, it doesn't seem likely that this can be remedied non-surgically, but I'm trying to stay positive. Considering how happy I was, I can't even entertain at this point the prospect that 4 months is all I'm going to get before things go south.
So, I'll know tomorrow. Wish me luck, and I'll post once I know more.