To again record symptoms I perhaps have not listed here yet, I have had these two for a while now, but the hands are getting much, much worse.
With my eyes, when I wake up in the night and then awake for awhile, I'll sit at the computer and play Spyder Solitaire or read blogs...and I find that my pupils do not close for the longest time. They must be wide open, and it hurts terribly for 30 minutes or so until they finally adjust to the light. Reminds me of when I've had my pupils dilated at an opthamologist's and how painful my eyes were even with sunglasses on as I was driven home. In fact, I have tried sunglasses on in the middle of the night and dimming my computer screen to almost black, and still, my eyes are burning and almost impossible to see through.
I looked this up, finally, yesterday. This is called "sluggish pupils." And either occurs in those over 70 years old, or those with MS, or someone with pressure on the optic nerve. My symptoms, in some areas, greatly resemble those of MS, a nerve demylineating disease. In fact, I was told once by a medical professional (this was about a year post injury) that she thought I had MS. Because her mother had MS, she even called herself an expert.
I researched MS online and even joined for many months an MS support group. Until, God led a woman to post on that group about Chiari Malformation, which led me to learn about The Chiari Institute and meet many strong and beautiful, long-lasting friends. I do not have congenital Chiari, but I have an acquired chiari due to the trauma.
My hands...this is the worsening symptom. They are becoming very weak in their grip to where it is painful and difficult to open a doorknob or use a spoon to stir a cake mix together. Every morning (or in the middle of the night....I never wake up in the morning having slept all night), I wake up with my hands burning, feeling like they are asleep. I wonder if I have my hands clenched in fists while I sleep. The palms start to itch and the pain stays in them (the entire hand and all fingers, both hands) for a very long time, sometimes all day.
We all know that hand pain is often linked to upper Cspine. That is where all those nerves originate.
Again, it all tells me I must risk this surgery.
You might wonder (as I would, if I were not me) why I keep stating over and over, "It's time."
"I must do this." "This tells me I must have this surgery." ad naseum, I'm sure, to the umpteenth degree.
It's because having the surgery is on my mind 24 hours a day. Well, perhaps not during the 3 or 4 hours of sleep I get each night. As I lie in bed awaiting sleep, I think of it. I reason it out. I think of so many others who have done worse since the fusion. Of their hardware coming loose. Of having to redo it all in a few years. Because online support groups are only visited by those who are suffering, that is pretty much all I hear. The ones who went on to lead incredible lives are not on the internet, really not even in a mentor-type position. They are off having fun.
I have the names of two people only who have done well with the fusion. One just wrote to me that her fusion, done two years ago, is failing.
What do I do if I choose not to follow through? What if mine fails? A halo for the rest of my life? My doctor says no, just the Johnson CTO. Heaven forbid.
What do I do if I do nothing, and things just worsen and worsen? I really don't think, even though I have the histories of so many patients who are suffering post fusion, that I have the option not to do it.
It's like Butch and Sundance at the end of the movie. In front of them is a steep cliff, with a shallow river at the bottom, a hundred feet below. Behind them are the Bolivian police with shotguns aimed and hammers back.
Some historians believe they survived.
The other thing that I deal with is my husband. A wonderful man, as I've written. But his life has become just staying home and being here for me. He has many fruitful years ahead of him. So, when it's possible, I force myself to drive in the car with him to get the mail in town. I bake him cakes. I sit in the recliner and watch shows not so interesting to me (Homicide and Cops etc) because I love him so, and I feel badly that his retirement years are not traveling and sightseeing as he had hoped. He never mentions this to me, and he never will. He might not even think it. But it haunts me.
Well, time to take the cake out of the oven and get dressed and go along for the ride to the Post Office.