My story of hope begins over 15 years ago when mucus filaments began forming on my corneas. Each time I blinked, the filaments would scratch my corneas, and my eyes would become inflamed. They became sensitive to light, and I started seeing an ophthalmologist up to three times a week.
To give me some relief, the ophthalmologist would numb my eyes and scrape off the filaments. Sometimes the filaments would return within a few hours. It was horrible! Finally, suspecting a connective tissue disease, the ophthalmologist recommended I see a rheumatologist.
After a Gallium scan in 2002, the rheumatologist diagnosed Sjogren’s Syndrome, a systemic autoimmune disease in which white blood cells attack moisture producing glands. He prescribed Plaquenil, a drug that treats malaria and symptoms of rheumatoid arthritis. It helped some, but I continued to struggle with Dry Eye, and filaments, for years.
I didn’t know what to do. I begged my ophthalmologist to give me a bottle of numbing drops so I could get some relief at home, but that was out of the question. Numbing drops can cause harm with frequent use and are never prescribed to patients. They would damage my corneas even more. Instead, the ophthalmologist prescribed steroid drops to control the pain. After using them for a while, I developed a cataract.
Surgery Exacerbated My Symptoms
I lived in pain for years. During that time I saw countless doctors and tried everything: Restasis, punctal plugs (several times), lubricating drops, and just about every prescription drop available. After developing painful ulcers, I was referred to a cornea specialist who suggested cauterizing my tear ducts. He in turn referred me to an oculoplastic surgeon for the procedure that seemed to help only a little. Tragically, during the procedure my cornea was scratched, which only added to my misery. I suffered with Dry Eye for another 10 years.
Then in 2013, I was diagnosed with colon cancer, and had a right hemicolectomy. A surgeon removed the right side of my colon and attached the small intestine to the remaining portion of the colon. Unfortunately, one section that had to be removed, the ascending colon, puts moisture back into the body. Without this organ, and still suffering from Sjogren’s Syndrome, my Dry Eye symptoms got even worse.
My eyes became more light-sensitive, and I wasn’t able to see anything but a bright, white light when I went outdoors. Driving was out of the question. I couldn’t go grocery shopping because the lights in the stores were too bright, and my vision was blurred. Even in church, I wore sunglasses. I removed the fluorescent lights in my office. I couldn’t sit near a window in a restaurant, or have the blinds open in any room, because the light caused pain. Even the lights of a TV were too bright, causing pain.
One time the pain was so great I went to the ER. There was nothing they could do but give me strong pain meds. The meds helped ease my pain temporarily, but made my symptoms even worse.
Don’t Come Back
One day, the ophthalmologist I’d been seeing for 20 years told me not to come back. She couldn’t help me anymore. I left her office, got in my car, and wept. Where could I go for help? What would I do?
I searched online and found PROSE scleral lenses, a treatment for Dry Eye. I thought I’d finally found a solution for my pain. As soon as the office approved me, I was on a flight to Boston to get fitted for a pair of scleral lenses at the Boston Foundation for Sight. At $10K per pair, they had to help. I ended up spending two weeks in Boston.
With the lenses in, my eyes they felt pretty good. However, the moment I removed them, the pain was back and even more intense. The lenses were difficult to put in, and I went through nine trial sets before finding a pair that fit. The day I was scheduled to fly home I broke one of the lenses, and had to get a replacement before leaving. I realized scleral lenses weren’t the answer for me. Maybe for some, but definitely not for me.
Sew My Eyes Shut
As if all of that weren’t enough, while still in Boston, I began having blepharospasms. My eyes would spontaneously close and then stay tightly closed. I would have to undergo treatment with Botox injections for the spasms when I returned home to Knoxville.
Back home, I made an appointment with the oculoplastic surgeon who had cauterized my tear ducts. I explained about the blepharospasms and asked for Botox injections. He refused to do them. He said I would be in so much pain from the injections that he would have to sew my eyes shut. That didn’t sound like a viable option, at all!
I Wasn’t Ready to Give up Yet
How was I supposed to live with this? I was in constant pain. It felt as if both eyes were filled with crushed glass. My vision was extremely blurry, and opening my eyes between spasms was excruciatingly painful, so I kept my eyes closed as much as possible. I’d started walking into things. I still couldn’t drive. My boss asked me to consider going on disability because it was difficult for me to see the computer.
I became depressed. Pain medication and antidepressants made my eyes drier and exacerbated my symptoms. Social situations became difficult because I was in pain and unable to keep my eyes open. I researched Seeing Eye dogs and Braille, but they wouldn’t stop the pain. I even considered suicide, but because of my faith, I ruled it out.
This was no way to live. Squinting and in pain, I kept searching online for help, and eventually found a doctor in Florida who said he could. I was skeptical about trying another doctor, but decided to give him a chance. I wasn’t ready to give up yet.
At my first visit, the doctor spent four hours with me, diagnosing a variety of conditions and putting together a treatment plan. He ran tests on my eyes that no doctor had done before. First, he confirmed I had aqueous deficiency, then he cauterized the rest of my tear ducts to keep any tear film from draining out. For conjunctivochalasis, he recommended amniotic membrane transplants (AMT), and for meibomian gland dysfunction, meibomian gland probing.
Still skeptical, I scheduled AMT surgery for the following month, one eye at a time, about four weeks apart. The first eye went perfectly, and healed right on schedule. The second eye recovered more slowly. Unfortunately, after the second surgery, I was still unable to see in that eye. I resolved myself to a life of blindness. I would be O.K. with that, as long as the pain was gone. But the doctor wasn’t about to give up on my sight. He flooded my eyes with steroid drops, restoring vision in that eye! Later, he probed my meibomian glands. He even set up an appointment with a local plastic surgeon for Botox injections to control the blepharospasms. I could finally see again, and my eyes were much more comfortable. This new doctor had restored my hope!
Susie Brockman’s Renewed Hope
My eyes have been improving ever since. But it’s been a process, and it’s a process that continues. I still receive Botox injections every two months for blepharospasms, even though they dry my eyes a bit. (I’m researching other treatments so I can stop the Botox injections: hypnosis in the UK; brain retraining in Canada). I currently use autologous serum drops, made from my own blood, five times a day in each eye, and I’m undergoing other treatments for meibomian gland dysfunction. I still have bad days, but I’m not in constant pain like I was before.
Plus, now I’m able to drive, though not if I develop a corneal filament, not if it’s a long distance, or if I’m having blepharospasms. My eyes are not as light-sensitive as they were, and I can see outdoors again. Most importantly, I found what I thought I had lost forever, hope. That’s why my advice for others who are suffering is never give up!
Susie Brockman, Chronic Dry Eye Patient
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