Tag: story of hope

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My name is Judi Beatty and I’ve had Dry Eye for nearly 20 years. Until last year my symptoms included a rough feeling at the top of my eye lids, dryness, headaches, itching, depression and persistent burning in both eyes — the worst symptom of all.

But last year I finally decided to step out of my comfort zone and reach out to a well known Dry Eye doctor out of state. So in July of 2018 my husband and I flew from our home in Orange County California to see Dr. Steven Maskin in Tampa, Florida.

Judi Beatty, Orange County California Dry Eye Support Group Coordinator

I’m one of the three volunteer coordinators of the Orange County California Dry Eye Support Group. Twice a year we invite a Dry Eye doctor to speak to our 200 members. Over the last 15 years, looking for doctors to speak to our group, I have seen more doctors than I can count and I am grateful for each one of them for taking the time to learn about Dry Eye. It can be a debilitating, depressing, life-changing disease. But last year Dr. Maskin made the biggest difference in how my eyes feel.

Talking to Patients

Before my husband and I finally decided to make the trip to see Dr. Maskin, I did my homework. (Flying to Florida from California wasn’t an easy decision to make at 74, or something I wanted to do, but I did want to get better.) I read posts written by his patients on various websites. And I spoke with many of them. They were from across the U.S. and all had severe Dry Eye.

Some patients told me they hadn’t been able to find relief and their lives had been destroyed by the disease. They became housebound. Some even said they wanted to die. But when they found Dr. Maskin, and he restored their quality-of-life, they got their lives back.

The Examination

While sitting in his waiting room I noticed a map with pins that showed where Dr. Maskin’s patients had come from. The map was covered with pins because people had flown from all over the world to see him. And I thought California was far away!

On the first day of appointments, Dr. Maskin examined my eyes and performed a series of tests. While I sat at the slit lamp, he looked all over my eyes carefully, did a flourescein clearance test, and pressed on my upper and lower lids to determine the number of functioning Meibomian glands.

For the test of aqueous deficiency (dryness), after placing a numbing drop in each eye, a technician dried my eyelid margins, then put Schrimer strips in the lower pouch of each eye, being careful not to touch the corneas to prevent reflex tearing which would skew the test results. After five minutes, the technician removed the Schirmer strips. She noted the how far moisture had travelled up the strip, then repeated the test two more times, leaving the Schirmer strips in my eyes each time for five minutes.

Meibography revealed the state of my Meibomian glands –their structure (length, width, and overall shape), whether or not they could function, or if they had atrophied. The confocal microscope showed my glands at a microscopic cellular level. Dr. Maskin explained inflammation, an underlying factor in Dry Eye, often starts here.

The Diagnosis

Next came the diagnosis. It was based on the exam and the test results, and would be confirmed after probing my eyelids. This is what Dr. Maskin said I had:

• Non-Sjögrens aqueous deficiency
• Delayed tear clearance
• Allergies
• Staphylococcus infection
• Meibomian gland orifice obstruction including periductal fibrosis, scar tissue, and keratinization from lack of blinking
• Conjunctivochalasis of the upper and lower part of the inner eye lids and on the eye ball
• Greater occipital neuralgia — that caused my headaches for five years!
• Blepharitis

It was amazing to have such a thorough diagnosis. No wonder my eyes felt so bad for so long!

Probing, Expression, and Cautery

That same day Dr. Maskin probed the Meibomian glands in my right eye. First the technician applied an ointment containing lidocaine and jojoba oil to numb the lids and minimize discomfort during the procedure. After a few minutes Dr. Maskin started probing the glands, inserting a small metal probe into each gland as I sat at the slit lamp.

He noted the sound made by the probe as it entered each gland — spongy, pop, gritty, or no sound – while the technician took notes. After probing both lids, Dr. Maskin used an expresser tool that cleared the glands with a squeezing, rolling motion, remarking that a lot of debris was coming out of the glands. Amazingly, the number of functioning Meibomian glands more than doubled immediately after probing.

I learned a lot from Dr. Maskin on day one, and on day two I returned to have my left eyelids probed and a superficial cautery of the lower left punctum. There was no real severe pain during probing. I felt mainly pressure just like the day before. Unfortunately, there wasn’t enough time to express the glands in my left eye because we had a flight to catch.

Tweaking the Judi Beatty Daily Regimen

For the next month Dr. Maskin stayed in contact with me via e-mail — sometimes daily — helping me tweak my care program. He felt that now that my glands were open I should stop using all of my facial products because of allergies or sensitivities. So I did. No more face or eye makeup, and no more moisturizers. He had me stop Bepreve drops and Retaine ointment for the same reasons, and prescribed other products until I found something that worked but didn’t cause irritation. He also had me try various eyelid cleaners and face washes, and prescribed sterile saline for flushing my eyes periodically.

My Daily Routine

Currently I use only Oasis Tears eye drops once or twice a day and autologous serum 100% in the morning and evening. I apply warm, moist compresses twice a day, use Free and Clear Shampoo on my hair, Soothe ointment at night, and Glad Wrap to keep my lids closed while I sleep. Plus I drink lots of water, which is critical. (Dr. Maskin told me to keep a daily record of how my eyes feel, notice if they are bothersome, and “ask myself what did I just do differently” that may have caused it.)

I am still searching for a safe moisturizer for my face and something that I can tolerate to clean my eyes to reduce blepharitis and styes, and possibly a concealer to hide the dark circles under my eyes. Thankfully, I am free of the burning in my eyes but still have occasional dryness which is easily remedied by Oasis eye drops (which I love). I continue to carefully monitor anything I put on my face or in my eyes, keeping a daily journal to help me determine if anything I use could be causing my symptoms to return.

The Best My Eyes Have Ever Felt

I have to say, that in 20 years, this is the best my eyes have ever felt, and I owe it to Dr. Maskin. Other doctors along the way also helped me a lot and I am grateful for their care.

Today my eyes aren’t perfect, but for the last nine months they’ve been 80% better most of the time. I still feel the roughness in the upper part of my eyes occasionally, probably due to the conjunctivochalasis Dr. Maskin found. Someday I may decide to have it fixed. And although I still have some dryness, it’s minimal  and resolved with my daily regimen and drinking lots of water. Thankfully the burning is completely gone.

Dr. Maskin is a brilliant teacher, ophthalmologist, scientist, detective, and someone who really cares about helping people. He diagnosed my complex condition and addressed my symptoms. Plus he helped me figure out the many things that I needed to change in my daily routine. He taught me that for me “the less I put on my face and eyes the better my eyes feel.” I have no words to express my gratitude because I am beyond grateful and so glad that I took a chance and went to see Dr. Maskin.

Judi Beatty
Coordinator, Orange County Dry Eye Support Group
www.OCDryEyeSupportGroup.org

 

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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.

Another Doctor

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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Hope — such a tiny word that carries so much weight, especially for those of us who suffer from chronic Dry Eye.

Hope is what we turn to as we face each new day. While it doesn’t always come easily, hope can give us the strength to endure this miserable disease, and never stop searching for new or more effective treatments… and maybe even someday a cure. But navigating a world with red, swollen, and painful eyes, struggling with the simplest tasks, robbed of the quality of life we once knew, can destroy any hope of ever feeling better.

My name is Susan Howell and I know about hope. My story is probably like that of so many others struggling with Dry Eye. Before I got it, I led a very active and social life. It was filled with promise. I was independent and could do whatever I wanted. Then, suddenly, everything came to a screeching halt as I succumbed — both physically and mentally — to the disease.

I began my battle with chronic Dry Eye two years ago. Just one year later I thought my life was over. I was suddenly unable to drive even just four miles to the local grocery store. Over the course of those many painful and terrifying months, I was diagnosed with aqueous deficiency, evaporative Dry Eye, and meibomian gland dysfunction.

As my Dry Eye symptoms worsened, the revolving door of endless eye doctors left me angry, frustrated, and filled with disappointment. Hopelessness and despair became my new soul mates. Their emotional toll was steep. Anxiety, panic attacks, and massive depression rocked me to my core, leaving me unable to eat, sleep, or concentrate on anything. Emotionally depleted, with eyes in constant pain, and realizing I could not fight this alone, I took the advice of a friend who convinced me to surrender and seek medical help.

Susan Howell’s Hope Restored

Over the next six months, a wonderful primary care physician helped tame the crippling beast that raged inside me. While there was nothing he could do for my eyes, his treatment and compassion set me back on track emotionally. And with that, I was able to persevere and refocus on finding an eye doctor.

After intense searching online, help came in an unexpected e-mail reply from Dr. Steven Maskin, an ophthalmologist in Tampa, Florida who specializes in the treatment of chronic Dry Eye disease. Dr. Maskin understood both my physical and mental pain, and aimed to bring comfort to my eyes. Over the course of five months under his care, my eye symptoms improved enough that my quality of life — something I thought was lost forever — was restored.

I realize hope can be hard to hang on to, and finding doctors who understand what a Dry Eye patient is going through is a task in itself. But recently I was able to travel alone to Virginia and New York to visit family and friends. Hope was with me then, securely tucked in my back pocket. And it’s still with me now.

As a community of Dry Eye sufferers, we must all remember that without hope — this little four letter word — we run the risk or losing ourselves and allowing the disease to rule our lives.

Hang on to hope.

Truly,

Susan Howell, Chronic Dry Eye Patient

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It’s been twenty one months since I developed this horrible Dry Eye disease. Back then my symptoms were unbearable. My eyes were scratchy and gritty. I could hardly keep them open they hurt so much. It felt like I had foreign objects in my eyes. There were days I didn’t want to get up in the morning and I couldn’t wait to go to bed at night. Actually that was true on most days!

It all started two weeks after cataract surgery. I’d experienced severe eye pain for no apparent reason in past years. But it always went away after a few days. Not anymore. After seeing six eye doctors, I was scared this was going to be my new normal. It was hard just to keep searching for the right doctor. How do you keep searching for the right doctor when your  eyes feel so bad? I even felt as if I was going to lose my sanity.

A Doctor Who Finally Helps

Although we live in Michigan, my husband and I are snow birds, spending our winters in Florida. So in January 2015, I was very lucky to find Dr. Steven Maskin in Tampa, just over an hour away from our winter home. He was the first doctor who understood my symptoms, diagnosed a variety of conditions, and knew what to do about them. The first thing he did was check for infections – which I had. He probed my meibomian glands, and with that I finally had some relief. He also cauterized my upper and lower tear ducts because my tear film was aqueous deficient. But I needed even more treatment. Because there were wrinkles and heavy red veining on the surface of my eyes I had surgery – amniotic membrane transplants – in both eyes.

We ended up spending a hot summer in Florida as I underwent treatment. And for nine months I made weekly trips to Tampa. Although it was a long nine months, I was grateful to finally be in the care of a doctor who could help.

My meibomian glands were the biggest challenge. Although after probing they produced oil, the oil wasn’t making its way to the tear film. So I continued to experience discomfort and a variety of troublesome symptoms. But Dr. Maskin was not going to give up on me. He was determined to get me to a place where I would be comfortable. He gave me eye injections for inflammation and he used larger probes and dilated my meibomian glands to improve the flow of oil.

A Wet Contact Lens

In the fall of 2015 I wanted to return home to Michigan to see my family which I hadn’t seen in months. Dr. Maskin tried a bandage contact lens in my left eye, the worse of the two. When it helped tremendously, Dr. Maskin suggested that, while home in Michigan, I should find a doctor who could fit me for contacts – the wettest ones that are comfortable. The contacts would work as a bandage to protect my eyes.

At first I didn’t believe that contacts could improve my eye comfort. I had tried contacts when I was younger and my eyes just couldn’t handle them. So I didn’t think they would work now. But I decided to follow Dr. Maskin’s advice. It turns out the contacts are a life saver for me. I found a wonderful optometrist in Michigan who found a pair of contacts, Dailies Total 1, that would work for me. Because I have astigmatism, I still have to wear glasses to correct my vision. But now I put the contacts in first thing in the morning, and take them out when I go to bed each night. Thankfully my eyes feel normal and comfortable most days.

Although I don’t think much about my eyes anymore, certain environmental conditions can change that – sand or dust blowing in the air; riding a motorcycle or a motorboat. Going to the beach is still a bit concerning. But most of the time my eyes are pretty comfortable.

Keep Searching for the Right Doctor

I wanted to share my story because I know many of you are experiencing horrible symptoms and wondering if life will ever be normal again. All I can say is keep searching for the right doctor. They are out there. You just have to find them. I did. And now I function normally (mostly) and once again enjoy life. Yes, it took time and perseverance. And at times I never thought I would get better. But I did. I got much better.

Unfortunately, there’s no quick fix for Dry Eye. It takes time and energy to find the right doctor. And you have to make a commitment to stay the course and get better.

I truly believed my case was hopeless. I felt frustrated, desperate, and wasn’t sure for a few months if I even wanted to wake up in the morning. But…here I am writing this, feeling blessed. There are many treatment options out there for everyone with Dry Eye. Explore them all and hope for the best. Keep searching for the right doctor and you will find help. Nothing lasts forever!

Sue VandePanne

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