But lately, (in the last 10 years) I've become disabled. I've developed speech difficulty and a seizure. It varies in severity from a slight stutter to a complete inability to talk. And it feels crumby, like the flu. Recently, by accident, I discovered that it improves when I push on my solar plexus and worsens when I push from behind my right kidney.
I've told this story to 2 surgeons, a couple neurologists (1 brain surgeon and 1 parkinson's and MS expert) and a speech therapist. The speech therapist admits there is an important nerve for speech below the diaphragm, but it's on the left side, not the right. They all just look amazed, and go "hmmmm..." The surgeons look to me like they're doing a risk/reward calculation in their head. I look way too healthy to them.
I can drive myself and except for under one rib, I don't have pain unless I push around on my abdomen.
Mornings are my worst time. And I hate to lay down to sleep.
Everythings worse when I lay down. Within minutes, I feel awful and am unable to talk. My ex-wife says I have seizures (I call them tics) in my sleep. The sleep lab says I have disturbances while I sleep. A CPAP breathing machine doesn't help. Sleeping on my stomach seems to help. I can't concentrate or make decisions too well. I need a major nap most days. I'm more frustrated than depressed. I'm choosing good attitudes (I can control my attitude). But I border on depression. I want a better life, but of course, I can't control everything. It's just so lonely and isolating being out of work and having more of a relationship with my bed than with human beings. My ex-wife... well she made her choice. And given the information we had, who could blame her for wanting out. It's hard to have faith when you don't know what you're dealing with. But then, faith is the evidence of things not seen.
The surgeons both mentioned adhesions which is what brought me to this website. From what I'm reading about corrective surgery, it appears that the risks are indeed significant, which is disappointing. And the rewards... well nobody's heard of symptoms like mine so the rewards are nil to nothing. So in the risk/reward calculation,
I'm way too high a risk. What I need is information. And adhesions are the best theory I've got. I'm tired of being the only person on the planet with these symptoms. I know answers aren't always forthcoming, and there are some humbling mysteries in this world. (I remember being cocky and naive, before this all happened) But it seems to me that I shouldn't be that strange. When I ask the speech therapist where the best research is happening, she just shrugged. I can't imagine they have schools for speech pathologists, but no place for on-going research. That's just a dumb way to operate. Somehow, I need to get past this awed and dumb-founded look of embarrassment and get to someone who is doing research, who knows about adhesions.
This celebrex discovery is exciting, isn't it? Maybe the risks of surgery will soon become much less significant. Submitting to the surgeon's knife need not be something to fear.