The End of the World as I knew it, October 2010.

If you’ve read my archives to this blog, you know where I am right now.  Early October, 2010.   I had suffered a stroke at the end of that September… the long version of up to this point is in the October 2010 archives.   I knew, going into my first appointment with my neurologist, that my MRI had come back abnormal, positive, whichever term you prefer.   I had read the report, and was having difficulties grasping exactly what it said.   “Scattered areas of demyelination, and one older lacunar infarct.”   Er… looking up demyelination had led me to exactly one illness… multiple sclerosis… and I was scared.

My neurologist looked at me and said, “The easiest way for you to understand this is to take a look.”   and he put the actual MRI films up.   It was immediately obvious that those little white spots, each the size of a pea, were not supposed to be there.  Even more sobering was the number of them.  Scattered, indeed.   He stared at the films for a long moment, gave an expansive shrug and glanced at me.   “I don’t know what they are.”  He finally admitted.  “But we’re going to find out.”

Finding out started a barrage of tests, an MRA, an echocardiogram, a spinal tap.  Nothing, nothing, nothing, until one small note on the echocardiogram popped up, and it was only tentative.   “Suggestion of a patent foramen ovale.”

I knew what a patent foramen ovale was, my niece had undergone open heart surgery to correct hers.   A congenital heart defect?  But I was 41, not 2.   Could it have gone unnoticed this long?   Dubious, but that was the end of the barrage of tests.  It was the only hint we had of what might have caused this, the only lead we could chase.  I was scheduled for a TEE (transesophegeal echocardiogram) to get a better look.   I do not like anesthesia, and the happy statement that I would not remember any of it only made it worse.  So… me of the highly effective gag reflex…could vomit all over three doctors, a nurse, and two students and NOT remember it?   I could admit to the murder of the century, and not remember it?   Pee myself?   (Yes, I have an overactive imagination, we’ve established that)

The first thing I remember coming out was the utterly excited statement:  “We found it!”

Found it.  Found what?   Oh, right.  The defect.   Once I regained a certain level of consciousness, it began to make sense.  Yes, I had a PFO, previously undiagnosed.   It was, they told me gleefully, a surgical fix.   They were gleeful, I was not.   I’d stood in the hospital during my niece’s open heart, I’d been there in the recovery room after.   Open heart surgery?  I wasn’t 2.  I was 41.   This was big time surgery, and I wasn’t sure I was up to it.   Yes, my brain had polka dots, but….

I was taken into consult with the interventional cardiology team, and they were quick to let me know that medical advances had completely changed this procedure.  I was young, I was a good candidate, they wanted to attempt a repair via catheterization.   No big scarring, minimally invasive, I’d be back at work in a week or two.  It sounded too good to be true.   But they were confident, and raring to go.

They were, but their own neurology team (not the one I had been dealing with at my small rural hospital) was less than convinced.   They held out for medication and suggested surgery only if I had a ‘significant’ stroke.   As if the one I was dealing with was not quite significant enough for them.   I had my primary physician, the neurologist he’d sent me to, and my cardiology team urging me to go ahead, and a big hospital neuro team urging me to ‘wait and see’.

I am not a very decisive person, but to me, there was no decision.  We were going ahead with the surgery, and a week before Thanksgiving I went in for the procedure.  Exactly as promised, I walked out of the University of Wisconsin hospital 24hrs later, the proud new owner of my very own Amplatzer Septal occluder, and I went home.

That week was Thanksgiving.  It really didn’t quite sink in then, I was busy and still not right.   Sleepy and on edge.   It wasn’t until later when it began to hit me.   I’m never alone, if I’m bored or lonely, all I have to do is open the door to the hallway and start my very own movie rolling.   At first I blamed the silence on the persistent headache I’d had since the stroke, but by three weeks, it was becoming obvious… there was nobody to talk to.   My mind was empty.   There wasn’t even the stupidest fragment of a story I would never waste time to consider growing.

So many people came to me, and told me the same thing…. “You’re so lucky.   You got off without a single problem!”  That was never right, my affected side is numb, heavy, and just off.   But that I was willing to live with.   The brain pauses… more annoying, but still bearable.   But it seemed like I was facing a disaster….losing my ability to write…but most people considered that a small hobby, not too much to lose.  I was growing more and more panicked, however.  I’d struggled for years…since I was 15…and it looked like I was going to lose whatever hope I still had of making this happen.


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