Monday, June 9, 2008

Red to Brown and the Great Gray Blob

[Begin reading with Eyes in the Back of My Head]

To continue with the story, on that Tuesday morning I immediately went in to see my optometrist to determine why the vision in my right eye now looked smeary. One of my lifelong (well maybe since my teens) fears has been to lose what vision I do have. I began wearing glasses when I was four years old and in kindergarten. By the time I was in Jr. high school, the near-sightedness of my vision had surpassed that of both my myopically-challenged parents. And now my vision is so poor without correction - I can still achieve 20/20 with appropriate lenses - that I am not a candidate for the current offerings of laser vision correction. Maybe someday when they perfect the technique of inserting permanent lenses underneath the cornea. I hear that's about as simple as cataract surgery.

So back to that morning, the visual exam was not turning up any clues until my optometrist brought out a collection of colored pipecleaners. You know the kind used for crafting projects and are available at stores like Michaels or Hobby Lobby. Well, Dr. Obremsky asked me to pick out different colored pipes using only my right eye. This is the test I failed. I had my pinks, whites, reds, and oranges all confused. So the doctor called ahead to get me an emergency appointment with a Retinal Specialist.

By this time it was apparent that I was not going to make it to the concert hall by 9:45am for the first performance at 10:00am. I called the personnel manager and explained a little about what was going on, although I really didn't know that yet myself. During this appointment, I was put through all the standard visual hoops and a few new ones. They determined that there was nothing physically wrong with my retina to explain the visual disturbances, but that I needed to see someone even more specialized. So they called ahead and informed the office of a neuro-opthamologist in Rockville, MD, that I would be arriving that afternoon to be seen.

From this 2nd eye appointment, I made it to the Concert Hall at George Mason University for the second 'Kiddie' concert at 11:30am. Here I am scared, vision blurry, pupils dilated, and a tad bit stressed. But perform and try not to show weakness I did. After this, my Mom and I - remember my Mom was kindly accompanying me all day - ate lunch before heading to Rockville to meet Dr. Katz, a neuro-opthamologist.

Dr. Katz's team put me through yet more tests, including a visual fields test on a massive machine. While trying to stare at the center dot and press the button when I saw lights flash elsewhere, my vision kept getting darker. I think it was this test which finally gave me a huge headache and I just wanted to curl up under a blanket, close my eyes, fall sleep to later wake up with perfect vision. We can all have fantasies, right?

He conducted a thorough exam, including color vision, again. But the most telling diagnostic tool came from an amazingly unofficial item. Dr. Katz used an eye-drop bottle with a bright red lid to hold directly in front of my line of sight. He asked me what color is was. Red, I said. He moved it slowly into my peripheral vision.

Whoa!!! Wait a minute.... The lid turned brown. No longer red, but brown. Did he pull a fast one and switch bottles, I thought. I knew he had not, but I also knew that it looked brown. How the heck did that happen?

Thus began the conversation about MRIs, brain matter, white spots, possible brain tumor, inflammation, multiple sclerosis, testing for lyme disease, and a bunch of other stuff which I couldn't digest. He ordered massive amounts of blood tests in addition to a round of MRI scans. He also discussed immediate treatment options which included going to the hospital three times a day for three days to receive an infusion of steroids or take an equal amount of steroids orally by using large amounts of cheap prednisone. The latter is what I chose primarily for convenience and cost sake.

On Wednesday, opera rehearsals began for Wagner's Tannhauser with the Baltimore Opera in which I was performing one of the backstage horn parts. An interesting tidbit about playing one of these horn parts in this particular opera is that you play near the beginning of the show and then must wait 2 hours to play again near the end. Lots of time for reading, talking, playing cards, or napping. Good thing, too, as I needed alot of downtime to deal with the horrible effects of the prednisone.

Probably the kindest word of caution that Dr. Katz gave me during that preliminary visit was that my vision would continue to get worse during the following days. I had responded so quickly to the changes that I still could see something out of that right eye and it was noticeably deteriorating throughout the day and becoming more painful to move.

By the following evening, all I could see out of my right eye was a wall of gray. It was as though someone had plastered gray paint over the window pane which is my cornea, but had left the outside light on. Funny. When I had thought of going blind, even if temporarily, I always thought that it would become pitch black. But in my case, it was a Great Gray Blob.

On Thursday, I went back to George Mason University to perform in two more 'Kiddie' concerts with the Fairfax Symphony and repeated those events the following week. On Friday, I caught a ride with another musician who was performing in Tannhauser. He was a violist who is married to a hornist in the National Symphony. He was very kind to carpool me up to Baltimore during the entire run. I wasn't comfortable driving while blind in one eye and the prednisone didn't agree with me.

When the radiologist report came in after the brain MRIs, I was relieved to learn that there was no tumor and more importantly that there was "no evidence of any demyelinating disease." I was lucky. It couldn't be MS. Dr. Katz put down in my records that I had experienced an isolated occurrence of optic neuritis with inflammation most likely due to the cold virus I had experienced the week before.

Who was I to argue. He also informed me that I now had an increased chance of developing multiple sclerosis. But if I made it five years without another event, then my risk reverted back to that of the general population. Whether this opinion holds true today, I do not know.

It took two months for my vision to return and about six months for my body to fully recover from the high doses of prednisone. Even to this day, lights are not as bright in my right eye and colors look slightly different when I compare the vision between my eyes. So now I have another barometer when it comes to MS. If pinks start to fade, it's time to call the neurologist.

Next: The Purple Jumper


  1. I feel somewhat like a sick voyeur to be ENJOYING reading your story...but your writing is so wonderful, I can't help but enjoy reading this! Thank you...

    Linda D. in Seattle

  2. Ditto what Linda said....I need to read more of this story...


  3. My MS started at the eyes too. Just an extention of our future eye exams will catch MS sooner...hopefully then a quick vaccine shot and no more MSers, just beautiful music forever. I wish I could hear you in concert. Sometimes I do...through your words.

  4. My eyesight, although not perfect and I wear bifocals, is something I treasure. Sometimes I sit and gaze at my son, taking joy in just seeing his face and knowing that I must remember these moments because you never know. You just never know.

    I've never had Optic Neuritis and hope I never do, but like Diane said, our eyes are just an extension of our brains. I've just been lucky so far.

    Thank you for sharing that experience. It both intrigued and terrified me.

    Somehow I was thinking (after reading Part I of this story) that it was a recent event. I'm glad it's in your past and that you are here with us, reading and writing. :-)

  5. wow, Lisa, I'm just now reading your story installments.

    The first time I had an optic neuritis ep (1994), I could not get a clue from any of the three eye people I went to see. I later (like 4 years later) learned that ON is hard to diagnose at your local glasses store and really requires a more experienced or specialized dr. I don't know if that is true but my neighbor who was an opthamologist (sp?) told me that, and also said that sometimes eye dr. don't want to get involved in diagnosing someone who might have MS???

    She at least made me feel like I wasn't crazy. The second time I had it (1998), I went to the web. I found ON, read about it, knew that's what it was and then read about MS. I knew I had it. I found a dr that was willing to walk me through the diagnosis process based on my story. I'll always be grateful for him. I had a diagnosis of definite MS only a few months later.


  6. Thanks so much everybody. My apologies for not responding to comments two months ago.

    Trrish, probably the largest blessing for not being dx MS during this ON experience is that I didn't have health insurance at the time. Best thing that could have happened that the neuro-opthamologist could definitely say that it wasn't MS. Gave me time to research and get the very best insurance policy I could after this. Well, we now know that there are serious loop-holes in insurance coverage with can leave a person non-covered fully.

    I'm glad that you are reading the story. I've had fun writing it.