Seeing Double, First Sign of Trouble

A very dangerous disease may be headed your way

Posted Jul 15, 2016

"Two Sandhill cranes," Photo by Doug Racine, U.S. Fish and Wildlife Service.
Source: "Two Sandhill cranes," Photo by Doug Racine, U.S. Fish and Wildlife Service.

If readers will pardon a departure from the norm in my themes and subjects, I would like to relate a very personal story, one which may save others from the ordeal I am going through right now. It might even save someone's sight.

It started with a very brief (five to ten minute) single episode of double vision. I looked out my window to see two delivery trucks, exactly alike, where only one had been minutes before. I'd been having a sore throat and some pain along the sides of my face, but never connected it with the "seeing double" episode. I almost neglected to mention it to my regular doctor at an appointment a couple of days later, but he suspected immediately that the soreness and the vision problem were related, and even put a name to the condition. It was called Temporal Arteritis, or Giant-cell arteritis, an aggressive inflammation of the artery that branches off the aorta and runs up both sides of the face, through the temple and into the brain.

The eyes are at great risk, and a couple of days later I lost the sight in the left one. Though my doctor thought he was right (and he was), he wanted confirmation of his diagnosis, and sent me first to a neurologist, who said it was an inflammation, but "not worrisome." (Wrong!) Next came an ophthalmologist, who said, no, it was macro-degeneration, nothing more. (Wrong again.) Then a retina specialist, looking at pictures of the inside of the eye, confirmed the diagnosis originally put forth by my primary care physician. The outspoken doctor didn't mince words. He chided me for "screwing around" with this thing for so long, adding that I'd had a stroke in the left eye, and the right eye could suffer the same fate at any time. He immediately ordered a biopsy of the temporal artery and the results sent to the lab. The next day the answer came: Temporal Arteritis, and a very strong case. I was terrified.

Let's back up for a moment. Of course all double vision episodes do not signal a dangerous situation. A concussion or head trauma can also cause it. But if other symptoms such as soreness in the face are present, tell your doctor immediately. A biopsy of the artery is key, absolutely crucial to the diagnosis, and to saving the as-yet unaffected eye. I was placed on a regimen of 80 mg of Prednisone a day, the only thing that seems to work. The side effects of the steroid are horrible––it can raise your blood sugar (something else to worry about), knock out your immune system, leaving your body vulnerable to infection, and lead to osteoporosis. It causes sores in the mouth, which makes eating difficult and painful. Still, if it saves my right eye, it will be worth it.

Will the sight in the left eye ever come back? Probably not, but I know there are people walking around, and even driving with one eye. I'm afraid to try that myself, at least not yet. Another question: Could we have saved the left eye from blindness, if my original doctor had immediately ordered the biopsy, instead of relying on confirmation from others, thus delaying the treatment? Playing the "what if" game is pointless. Better to accept what's happened and get on with it.

There are comic aspects. Without "stereo vision" from both eyes, you have no depth perception, and you may find yourself pouring coffee that lands nowhere near the cup. Try putting the cap back on your tooth paste tube. You know where the tube is, and you know where the cap is, but you can't get them together.

Almost as debilitating as the physical damage is the psychological. Call it the Fear Factor. What will happen next? Waiting for the other shoe to drop (the right eye to go blind) is truly scary. The medication makes you weak, often sick to your stomach, and dizzy. The lack of depth perception leaves you not quite sure where the floor is. You want to avoid falling down, at all costs.

Let me leave you with the tiniest glimmer of hope, even for the sightless left eye. Either it's my imagination, or my brain is supplying information that it does not actually see, I think I have the merest flicker of shapes and shadows in the peripheral vision of that eye. Will it grow into something more? Who knows?

My best advice, if I may offer any at this point, is what to do, and not to do, in my opinion. Attitude is everything. Keep moving, don't lie around feeling sorry for yourself, which is counterproductive. Assume that you can do more than you think, so don't depend on others to do it for you. You might be surprised and pleased with the results. Think positively and avoid negativity. Keep taking the Prednisone for as long as you are told, even though you hate it.

I'm sure there are many people who know a great deal more about Temporal Arteritis than I do, although even the experts don't know what causes it.  

Thanks for listening!