It wasn’t until my mother was diagnosed with early indications of eye disease at the age of 60 that I ever heard the word “glaucoma.” My mom had a good doctor, and the disease wasn’t impacting her daily life, so I didn’t seek to learn any more about it at that time.

Little did I know that at my next optometrist appointment (for mild near-sightedness) I would find myself immersed–and motivated–in the pursuit of knowledge.

It was a Friday afternoon, and I’d completed most of my eye chart testing when the doctor came to chat with me.

He said that my eye pressure (what’s that?) was elevated, and I should see an ophthalmologist to check it out. I thanked him and assured him that I’d schedule an appointment soon. 

“No,” he said. “I mean that I want you to see a doctor on Monday of next week. You can’t put this off.”

Diagnosis and Experimentation

At age 35 I was diagnosed with open-angle glaucoma in my left eye. I had lost some vision in the bottom right quadrant (toward my nose), but it didn’t really impact my daily activities.

My eye pressure was 35 (normal is around 12 to 22), and my doctor was a strong believer in holistic, non-invasive treatments, especially considering how young I was.

“Let’s save the invasive procedures for when you’re older,” he said, and started me on vitamins, bilberry extract, and lutein supplements. Caffeine was a no-no, and I had to keep my head above my heart, exercise more, and use eye drops.

Oh, the eye drops!

Lumigan, alphagan, xalatan, travatan, and the list continued on.

My doctor asked if I was interested in trying medical marijuana, but I declined. It was 1998, and there wasn’t as much research data available, so we tried several other approaches.

At one point I was using three different medications at various times throughout the day. Every day. My pressure got down to the low 20s, but it still wasn’t as low as we wanted it to be. We continued to experiment with different treatments.

Just When You Think It Can’t Get Any Worse

Less than a year later, we discovered that the pressure in my other eye was hovering around 30. That’s when discouragement first set in, and I understood why glaucoma is so often called the “silent thief of sight.”

I was being robbed blind…literally.

My friends and family didn’t know enough about glaucoma to really understand the long-term impact this disease would have on my sight. 

“Is that like cataracts?” they would ask. “My grandma just had cataract surgery, and she can see just great now.” 

Or, “Oh my! Does that make your eyes hurt?” 

“Is this something that you caught?”

“What caused it?”

When I tried explaining about eye pressure and fluid drainage using an over-inflated balloon analogy, the majority would cringe and stop me with a “Whoa! Too much information. I’ll take your word for it.” The struggle left me feeling very alone.

Fortunately, I soon made a friend at work who had similar issues. After each ophthalmologist visit we’d compare our scores and try to make light of our condition.

“Hey!” one of us would say, “I got a new low score! I’m down to 26. How about you?”

Our undesirable point of commonality at least enabled us to truly empathize with each other.

Dimming of the Light

I wanted to start monitoring my vision, to learn how fast I might be losing my eyesight, so I downloaded the Amsler Grid Eye Test. Each month I drew out the part of the grid that I could only see as a gray blob. 

I initially felt encouraged, since it didn’t seem to change, and I reverted back to relying on the visual field tests at the eye doctor’s office every six months.

Unfortunately, it wasn’t long before I had to admit to myself the extent of my vision loss. As much as I wanted to press the button on the clicker to confirm that I had seen each flash of light during the test, I knew it was pointless to lie about what I could, and could not, see. 

I sat in the examination chair with the clicker in my hand, seeing nothing, and doing nothing. Frustration became my new normal.

Changing Treatment

Blindness crept in. My left eye lost an entire quadrant, along with most of the one beside it. My right eye wasn’t as bad, but had an anomaly in that the largest blind spot is near the middle of my field of vision–not at all like the description of losing vision from the periphery inward.

My doctor and I decided to try selective laser trabeculoplasty (SLT) next. It was quick and painless, with little risk, and we got great results. I had the procedure done six times over a number of years, and used a combination eye drop in both eyes three times a day.

While my eye pressure remained fairly stable, however, my vision slowly continued to deteriorate until one day my doctor came to me with a new recommendation.

More Serious Surgery

From the beginning of my journey, my doctor and I had been saving more invasive procedures for when I was “older.” He now explained to me that it had been nearly 20 years and I was, in fact, older and needed to consider a more involved procedure. I opted for a trabeculectomy with the Ex-PRESS shunt, which provided a way for fluid to escape and reduce pressure in my eye.

I had the shunts inserted into both eyes, the surgeries six months apart. My pressure responded very well, and my doctor and I were pleased. The fluid flowed out of the shunt into a small reservoir called a bleb, then dissipated from there. Unfortunately, our optimism didn’t last long.

The bleb was near the top of my eye, under the eyelid. As it turned out, the bleb was expanding, which wouldn’t necessarily have been a bad thing except that it started creeping forward and became visible when my eye was open, looking like a white blister just above my iris.

We let it go for a time, until finally my doctor acknowledged that if it moved much more, it would interfere with my vision. And so, back to surgery I went to repair the bleb.

Back to the Drawing Board: Innovations

The healing time for the surgery took a while. My eye was swollen and bloodshot, but I needed to return to work. To avoid people staring and wondering if I had a contagious eye infection, I got an eye patch and spent the next three weeks making and receiving pirate jokes.

Within a year, my pressure began to slowly creep back up and was approaching 20 once again. This time there was a fairly new treatment available that my doctor suggested I try.

“Sure,” I said, “and how many times have you actually done this surgery?”

It turned out that I (thankfully) wouldn’t be his first patient to undergo this procedure; he had completed 20 surgeries of this type. It was a kind of combination of three different surgeries in one: trabeculoplasty, canaloplasty, and goniotomy. (Just learning those names was an accomplishment.)

I researched this new process and watched the videos on the web to see if it had received the accolades that my doctor had referenced. When I was convinced, we proceeded. The surgery went well, and the recovery time was minimal.

More Innovations, and Unusual Side Effects

“There’s a new eye drop out that’s having some great results. Want to try a sample?” my doctor asked at my next visit. The drops were called ROCKLATAN, and taking them would mean a reduction in how often I’d need to apply them. According to trial results, they had a great impact on lowering IOP. “Sure,” I told him, and started on the drops. 

My results were positive, I was only using one drop a day, and my pressure was where it was supposed to be. It was awesome.

Until it wasn’t.

It appears that I’m part of a small group of people who have serious side effects from the drops. After about two months, the redness, itching, and burning in my eyes became too much, and my doctor and I agreed that I’d revert back to another combo drop to help control my eye pressure.

Six Months Later…

Fast forward about six months and I had to ask, “So, doctor, why is my overall vision slightly blurry? I understand not seeing in the blind spots, but why is everything else out of focus?”

“Oh,” he replied, “the surgeries you’ve had have exacerbated the development of a cataract on your left lens at a very fast rate. We actually need to replace that lens to clear up your vision in that eye.”

This next surgery (basic cataract surgery) went well, and I was prepared to have clear vision within 48-72 hours. 

Instead, it got worse.

Everything went from a little blurry to VERY blurry. I went back to the doctor’s office, only to learn that my eye pressure had fallen all the way down to 4, which is dangerously low.

The inflated balloon analogy was now reversed, and little ripples (choroidal folds) were forming along the back of my retina. Not only that, but the back of my eye was swollen, known as retinal edema.

The next step was to see a retinal specialist. More eye drops. More time invested. More waiting.

“At least we’re not dealing with the high pressure of the glaucoma at this point,” I was told. I suppose it was an attempt to give me some hope and encouragement.

Every surgery is different, and the super-low pressure wasn’t a common outcome, but my doctors said they felt hopeful that everything would smooth out and my vision would return within a few months.

One More Obstacle

The swelling from the surgery did eventually subside, but the ripples weren’t smoothing out, even after several weeks. No matter what we tried, we couldn’t seem to get my eye pressure back UP beyond 9.

After a review of my history, it was determined that my various surgeries were now allowing too much fluid to leave my eye, preventing it from achieving a healthy IOP.

I went back in for another surgery. This time, they put a patch over the shunt/drain in the top of my eye. The reasons they didn’t remove it entirely were that (1) that would cause more trauma to my eye, and (2) the patch could be removed if we needed to use the drain again in the future.

The healing time from this surgery was slow, but my vision slowly began to clear and my pressure crept back toward the target zone. Ultimately, though, the results weren’t what we’d hoped for. The next step was to inject a steroid into my eye in an attempt to increase the IOP. As of the writing of this article, it hasn’t completely resolved, so the journey continues.

Where Things Stand Now, and Some Advice

I’ve been managing my glaucoma for 25 years now. I can still see out of both eyes. I can drive and I can read. I’m thankful for what I have, but I also know that my vision continues to deteriorate bit by bit. 

I told my doctor that I need another 25 years of sight, so let’s do what we must. I’ve had many days of discouragement, but I continue to have hope. There are always new studies being conducted, new treatments being developed, and new medications and procedures being approved regularly that I didn’t have access to before.

Perhaps you’re wondering, like I have, how to protect your valuable vision while living with this “silent thief of sight.”

The answer is to read, research, and learn about glaucoma. What it is, how it manifests, what it does, and different treatments that are available.

Get to know your doctor, and talk with them regularly. Ask enough questions about every procedure and about eye drops so that you could explain them confidently–and accurately–to someone else. Establish a way to reach your doctor with urgent questions.

Do what your doctor tells you. If you don’t understand something, or if the advice seems off to you, find another specialist and get another opinion. Switch doctors, if necessary.

Learn about the different parts of the eye and how they work, so you’ll recognize them when your doctor references them.

Learn how to effectively use your eye drops, and stick to your application schedule.

Find someone else who has this disease and talk with them. They’ll understand in a way that others never could.

Lastly, never give up hope. Be thankful for the sight that you do have, and do all that you can to keep this precious gift of sight.