What Happened Before and a Little After (Part V)

by irms

Update 4
So, the good news is, my neurologist is a really sweet woman who recently got a new perspective on the outer-workings of the medical process when dealing with a hospital issue of her own.  She was sympathetic, helpful and sincere.   A combination that’s hard to find in anybody, let alone in a doctor.   Here is what went down this morning (after an excessive wait at the hospital clinic):

The Verdict
Before I say anything else, I should just go ahead and admit that the findings are a bit of a downer.  On one hand, I am fortunate to know what I know, and on the other (frustrated as hell but) lucky to be able to walk about upright like a regular person whose brain breathes properly.

After sending my case out to a number of specialists, my neurologist has spoken to a team at Stanford and the bottom line is that the risk/benefit ratio for a surgical option is just not in my favor.  The experts agree that I am at significant/urgent risk for cerebral vascular accident (CVA = big fat stroke), which is a mortal threat, but that intracranial surgery is (for the moment) even more dangerous.  Here’s why:

  • Surgery in general, always carries the usual risk of excessive bleeding or bad reactions to medicine.  Brain surgery in particular has greater ramifications for that kind of bleeding.
  • Surgical options for repairing intracranial stenosis (narrowing of arteries in the brain, that’s what I have) are limited because the technologies just haven’t gotten there yet.  Apparently there just aren’t options available that are as good as similar surgeries in other parts of the body.  Arteries are made patent (wider) all the time in and around the heart, but those techniques don’t work as well in the brain.
  • In my case, specifically, the problem lies in that during surgery, even if the techniques were worth the risk, blood flow to one half of my brain would have to stop or be limited for a length of time and there’s no way for my body to compensate for that loss:
    • They can’t/shouldn’t perform an angioplasty (send a balloon up there to widen the artery) because while the balloon is up there, that half of my brain will have no way to breathe (get blood) and will likely cause a stroke.
    • They can’t/shouldn’t place a stint to hold the thing open, though they are often done in other parts of the body, because they can cause clotting all by themselves and there again cause a stroke.
    • Other scalpel options are not available because the problem is so far into my head (literally, not symbolically) that they may kill me trying to widen the blood highway.

So.  At this point in time, the only thing that makes sense is to try to ‘treat’ the risk of CVA medicinally.  It was made clear to me that I am never, ever, ever to miss a single dose of asprin, but we will be experiementing with different statins to try to find a solution that doesn’t leave me hot, nauseas and fatigued.  Regardless, the doctor says I will be on pills the rest of my life.  In addition to the pills,  I will go in every 4-6 months to have another MRI/MRA for the rest of my life.  The first one is scheduled for the end of next month.

While the risk/benefit ratio for surgery doesn’t work for me now, the doctor made it clear that, one day, even a risky or damaging surgery may be the only option.  The MRIs/MRAs will tell us when and if we need to reevaluate the situation, suck it up, and operate anyway.  She said that I am to report any and all unusual feelings because they could be indicators of decreased blood flow to the right side of my brain.  Also, another syncopidal episode (if I pass out again), could cause her to change her mind and recommend surgery.

The whole thing is a damned-if-you-do-damned-if-you-don’t-situation.  ‘Treating’ my condition medicinally has implications too. One of the glaring problems being that there is possibillity that the only symptom I’ll ever have is an catastrophic stroke, which would then make it too late to try surgery.  Also, statins are notorious for causing liver problems.  On the flip side of the coin, trying surgery now may just kill me anyway, and you know that wouldn’t be great.

What it all means is, I am just going to have to live with it.  For now anyway.  Right now our hands are tied and we’re just going to have to do the best we can with what we have.  God willing, we’ll find a medicine my body doens’t reject and I’ll go about my life as though nothing were wrong.  The only difference between me and other people being a quietly suffocating brain, but on the outside, it all appears normal.

Needess to say, the long-awaited appointment could have gone better, and at the same time, could have been worse.  The nuerologist was surprised that I remain optimistic saying that a very high percentage of her young patients are tossed into a depression and that such a thing is common — even expected.  But I still feel alright.  It’s a bummer and I’m frustrated by the longevity of the problem, but above that, I feel ok.  Maybe a little blue.

I don’t want this to be a problem for the rest of my life, if I had my druthers, we would crack open the skull, blow into the artery and move on.  But I don’t get to make this decision so I’ll deal with it.

Unless something changes drastically, I think this will be my last update.  You guys have stayed with me in a digitial sense, and I appreaciate the audience, but this is just the way it is now and writing about it would be oh so boring, and probably worse to read.  I better go about the business of figuring out how to deal with it, and you better get back to work — it’s the middle of the day for Pete’s sake!

Thanks everyone.  I couldn’t have dreamt a story this riduculous.

Always, Always, Always,

irm jr.

Now, to find some insurance…