“How did you know there was something wrong with your eye?”

This is the most common question I have received.

The first signs were a small visual effect in the inner right corner of my left eye.  I could only see it in certain lights. It was easily something I could ignore, as it wasn’t there all the time. It was a quivering, gelatinous spot mostly white & grey. This started probably as early as summer of 2009.

Gradually it became more common to see it in regular light. I remember at one point mentioning it to my ophthalmologist and he remarked he thought it was a visual affect from a cataract that was forming on the eye.

Almost suddenly in July or August of 2010 it became a shadow on my vision, geographic in shape with a white border.  For some reason I didn’t feel alarmed and didn’t immediately call my doctor.

Then I started occasionally see white spots, like shooting stars and the white border was more pronounced.  I went to the ophthalmologist. With a CRT scan they saw that there was swelling on the back of my retina. His first conclusion was this was a manifestation of my inflammatory disease, Reiter’s Syndrome that I have had for years and has often manifested as iritis or uveitis. The difference here was those always manifested in my right eye. This new issue was in my left.

The ophthalmologist decided to send me to a retinal specialist. Further tests and higher resolution pictures revealed a pocket of fluid raising the retina. It was near a “nevus” which is a mole on the eye.

The suspicion was it might be an internal scleritus and a regimen of oral prednisone was started. After two weeks there was no change and the conclusion was that the prednisone wasn’t having an effect (though I was told to stay on it for several more weeks).

At that point they ruled out a cancer. The Retinal Specialist told me there was there was too much fluid for it to be a melanoma and it didn’t fit as a lymphoma. But it was still a mystery. My specialist showed the pictures to his partner and her too was scratching his head.

In October 2010 my specialist sent me to University of Virginia’s eye clinic in Charlottesville. All of the same tests were run plus some and the doctor there was also uncertain of what was happening. Because the fluid appeared to be the primary manifestation he suggested that there was some sort of leakage of serum fluid from nearby blood vessels and suggested that trying a Cancer drug called Avastin may help.

A needle directly into the eye delivers Avastin. Currently it is used commonly for people with certain stages of macular degeneration.

In all this period I kept asking “Is this condition dangerous?”  “Is this retinal detachment?” I was always being reassured it wasn’t. The impression I had was that what I was facing was an anomaly.

I waited to see if it mya pass on its own. The idea of getting a shot in my eye and the building costs without health insurance were weighing on me.  I was also waiting for copies of test from UVA so I could consult with some other doctors.

The test information never came. The shadow seemed to settle down in to one spot and the lights calmed down so I focused on my life & business.

Suddenly just before Christmas I woke up one morning and the low frequencies in my right ear were gone, while the low frequencies in my left ear were enhanced and I felt like I had been hit by a truck.

I went to and Ear Nose & Throat doctor who suggested it may be Meniere’s disease. But Meniere’s is marked by severe Vertigo that I wasn’t having. He put me on Prednisone. Five days later I had to stop it as it was causing gastritis. About a week or so later I came down with full vertigo. I used the meclazine (Anti-vert) that helped a little but found better amelioration fro a remedy prescribed by my homeopath.

Near the end of this episode, the shadow in my eye suddenly moved to the center of my vision. Now it was extremely obnoxious. It was like having a smudge of soot on your glasses only you can’t get rid of it.

I went back to the Retinal specialist and elected to try the Avastin treatment.

In January of 2011 I had the first shot. Where it sounds difficult to have a shot in your eye, there is no pain involved and the procedure is so quick the worst thing that happens is there appears to be an oil spill suddenly floating to the top of your eye (which is really floating to the bottom, but because of the way the eye/brain interpret vision it seems to be going up.) We had a scheduled follow up for 4 weeks later.

Over the next ten days or so I had the impression that my vision was improving. A great sign. But it only lasted those ten days. Suddenly the shadow was just as prominent as before.  On my follow up I reported this. My doctor’s scans could show no improvement, but because I was reporting some he elected to try a second shot with a quicker follow-up. I asked to wait to take the second shot as I was in the middle of the worst cold I had ever had in my life. It had drained my energy, ended up lasting four weeks and was deep in my chest with unpredictable coughing. I didn’t want a needle in my eye and all of sudden fall into a coughing fit.

So finally in March we had the follow-up to the second shot. He was again disappointed with the result and started to suspect maybe this was a lymphoma. He said he wanted an MRI and possibly a biopsy.

The biopsy he described involved cutting the eye open, draining the vitreous from the eye, very carefully taking a needle to the location of the swelling and getting a sample, then refilling the eye with a substitute fluid for the vitreous and sealing it up.

Needless to say I had a difficult time wrapping my brain around the idea of this biopsy. Not to mention the cost that would be involved.  Just the idea of getting funds together for an MRI was creating more and more stress.

So I spent the next few weeks getting the prices from the area centers and hospitals for Mir’s. I finally had it and awaited my results. In the meantime, whether it was something from the MRI or a delayed response to the Avastin, the shadow in my eye moved. It went to the top of my vision.

When my retinal specialist reviewed the MRI with me at the end of March, he was encouraged that the shadow had moved. That it was appearing at the top of my vision meant the fluid had moved to the bottom of my eye and the scans were indicating the fluid was draining from the eye.

However, there was still a raised area beneath the retina. After a two-week follow-up, he was not as positive and suspected now that the fluid had been seated over a mass.

This is a scan from September, but it better illustrates the relationship between the fluid and the lesion. This is still when the shadow was in the lower left of my eye. But at tht time the doctors seemed to think the fluid and the raised area were the same thikng. It wasn’t until March that it became apparent the swelling below was a mass.

 He recommended I go to the Will’s eye institute in Philadelphia for a one-day workup to seek a diagnosis.

At the beginning of April I finally had qualified for a group health policy and was able to schedule a trip to Wills at the beginning of May.

On May 3rd I road Amtrak up the night before and stayed in a hotel a few blocks away from Wills. The next morning I was to be there at 7 am. I didn’t leave until 3:30 that afternoon. Most of the time I spent there was waiting. I think I spent a total of maybe two hours in tests and talking to doctors.

Where all my previous doctors had been uncertain about what was happening with me the conclusion at wills that afternoon was immediate, “You have a Malignant Melanoma and it needs to be treated with radiation ASAP.” They actually wanted me to return that coming Thursday to have it done. I had no financial resources to do that and I wanted to talk to my retinal Specialist. But most importantly I was emotionally drained by this news. As the procedure was described it would also tae away the center part of my vision. Just the emotional drain of thinking of the conversations I must have with my friends and family were weighing on my as I made my way back to the Amtrak station and waited for two plus hours for my train back to Richmond.