A week before surgery:

A week before surgery and I am feeling no pain. Makes me think about canceling this surgery I have spent the last 4 months researching and scheduling consults, etc. There will be pain after they drill and chisel off a piece of my skull plate and get the brain fluid to drain. I watch a lot of surgery shows, love when they expose what’s under the skin, such a jumble although I could see more order there if I had lots of training. When I think of it being done to me, I flash back to Anthropology classes where I learned ‘surgeons’ removed pieces of skull and then more pieces of some area of the brain, then the skull piece was sewn back to where it was. Then everyone prayed. The photos of the excavated and operated on skulls show big coarse Frankenstein stitches. The only anesthesia used was marijuana. Shocking and unbelievable especially when they say what people are smoking now is so much stronger than it was then. If that’s the case, there must have been a pain threshold scale up to 60 or even a hundred. Hard to believe.

My incision will be not worth mentioning and the stitches will be delicate, soon to be covered by my hair. No metal plate, just me being put back together. It doesn’t stop the Anthropology textbook or the Frankenstein movie images I have in mind but it is only a week before. I have plenty of time to replace those unpleasant thoughts. Oh, and those thoughts of paralysis, deafness, facial numbness, TN pain still.

Sometimes I don’t think I’m in pain, but I know my tolerance has increased over the last few years, so maybe I am. My pain scale has morphed, more evident by mood. I go for days in a dark mood, feeling the electricity in my left cheek. The rubber band stretch and twist from my left cheek to my left temple. The temple/jaw pain is new in the last 3 months. Eye spasms; actually not painful since the electricity only lasts a few seconds (unlike cheek to ear, cattle prod sensations, a prolonged torture) but scary…a true tic. Severe but brief. Sometimes the left eye closes rapidly rapidly. Little bolts zapping. Well.

To wrap around to the very first sentence, I have not had any pain today. 75 mg of baclofen , down from 90mg, and 600 mg of oxcarbazepine, down from 1200 mg. 4 months ago. Some pain but not enough to make me not want to do the dishes. I can do something today.

Still way too many meds and my arms are aching just keying these words. I can’t do more than 2 hours of physical labor before my biceps, triceps, calf muscles just throb, get fatigued. My sodium levels dropped so low last July (it is early March the next year) I was hospitalized for 3 days. I get crazy dizzy if I move suddenly, up and or down. So tired most of the time. Spring is coming, have to get better. I am used to working 5-7 hours in the garden with a mild tiredness resulting. This feeling of not being able to move is creepy.

After 2 years of severe Trigeminal neuralgia pain, chewing on the opposite side of my face, the right side, has created a new issue. It’s just not “TMJ”. If I sleep on my left side – it does not bother the TN – my right jaw becomes dislocated and then it is 2 days of pain ahead…massage, heat and liquor help to relax it and get it back to where it should be. If I sleep on the right side, the same thing happens. So I sleep on my back since that is the least painful. Not long, though. The most has been 6 uninterrupted blissful hours. Then I get up stretch, find the couch, another bed, get propped up, find a cover, get another hour. Those years of using one side over the other, was the only way out at the time but now feels just wrong. Hurts.

I have vague memories of the way it was before Trigeminal Neuralgia found me, 6 years ago. But the last 6 years have been something I want to close my eyes to. I am older now. I have other “age related” so they say issues. What if I come out on the other side all good and I find out I’m pain free but my age has debilitated me? What if it’s not the TN. Oh crap!!!!!!!! You just can’t pinpoint stuff sometimes. I can only meet myself on the other side of this surgery and hope it’s what they say it is.