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Another Eye Saga

Spent much of the day up in Wilmington again, and as we stayed off I-95, it didn’t rain.

Another trip to the eye surgeon, and the retina swelling in the right eye is down, and stable.  After really spiking 3 months ago and lots of meds since, last month’s test showed the swelling reduced by half and nearly normal; this time a slight reduction again.  Doctor is pleased.  After weeks (months, years?) on steroid drops into my eye, he wanted to try weaning me off them, and going over to using a non-steroid anti-inflammatory only.  Unfortunately, I had to advise them that by 10 days off the Pred Forte, the eye went “wonky” on me again, as usual, as always, and inflammation returned.  Damn thing gets red as a Stop Sign, feels like sandpaper, waters, burns, just general miseries all around.  Using just Nevanac (non0steroid) may be a great idea to the doctor, but my eye doesn’t agree.

Long-term steroid use into the eye causes cataracts, but as I’ve “been there, done that” and they don’t/can’t recur after surgery, that’s not the issue.  Steroids can, however, cause glaucoma.  This is an uncommon side-effect, but with glaucoma in my family, and the amount of this stuff I go through, trying to get me off it is smart doctoring.  I wish this stuff came in quart bottles like milk – that’s how much I use – or at least, that’s what it seems like.  Anyway, ’tis not to be, and I am to try to keep it stable on a maintenance dosage of one drop of Pred a day.

We also discussed the amount of debris inside the eye, in the formerly-clear vitreous fluid inside.  This is a product of all the inflammatory bouts for the last 8 years or so.  As each bout heals/eases, cells are sloughed off into the fluid.  It does not clean itself and over time, sufficient “debris” will accumulate to where it occludes vision.  The rate varies with each patient, as it’s directly related to the number and severity of the “episodes.”  Additionally, the debris “floats” in the gel-like fluid – and twists and turns and rolls with each slight movement of the head.  This sensation also increases over time.

SO – the vision in the right eye is actually pretty damn good, and I can read the chart down almost to the 20/20 line (post-cataract surgery) BUT ONLY if you’ve got the patience to wait me out.  I read the letters like a 3-year-old that is still unsure of which ones are which.  I’m staring at the first speck on the chart, waiting for all the shit in my eye to settle and/or move out of the way, then suddenly, the “C” shows clearly.  The slight movement of the eye to focus on Letter #2 is enough to shake up the snowglobe that I look through and I have to wait through this process again.  Doctor reports that I’m seeing at about 20/30 uncorrected and this is good.  I say it’s worthless!!  He looks aghast!  (In all fairness, he’s done great work, and 18 months ago, I was near the end of 3 years of legal blindness with it, pre Dr. L.  I’ve come a long way, baby, thanks all to this one man’s skill)  However, needing 5 minutes to read 5 letters on the bottom of the eye chart may indicate one thing, but it isn’t “usable sight.”  As I told the man, “If I’m driving behind you on your way home tonight, and I need 5 minutes to see what’s in front of me, is that good enough for you?”    He agreed with me that there is quite a difference between measured sight and usable sight. 

So my next “option” is Vitrectomy.  Those with squeamish stomachs should not click on the link.  Also, those with squeamish nervous systems should not be sent home with the knowledge that this is the next option.  As with any surgery, it is not without risks, most common is infection.  But I always have one other problem to deal with, which was a factor in the major procedures done 16 months ago.  The chronic inflammatory condition in the eye will cause it to, in all liklihood, go berzerk after surgical procedures and make any normal post-op inflammation look like a walk in the park.  And I can’t use the most common oral anti-inflammatory med, Prednisone, as I had a severe reaction to it about 18 years ago – was told then never to get near the stuff ever again.  So the standard of dosing the patient pre- and post-op with Prednisone is out of the question.  Last time, the stuff was injected into my eye while I was out!!!!  If I choose to have this done, it also means going to see a retina specialist (they do this sort of work) at Wills Eye Hospital in Philadelphia.

The only other option is learn to live with looking through a snowglobe.

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