20 years of dry eye
I have had dry eye for nearly 20 years, and up until last year my symptoms included a rough feeling at the top of my eye lids, dryness, headaches, itching, depression and the ongoing burning of my eyes, which I felt was the worst. However, in July of 2018 my husband and I flew to see a new doctor.
Day one included lots of testing, gland expression and probing:
Upper and lower gland expression all the glands in both eyes - upper and lower - to determine the current number of functioning glands
Meibography which shows the gland structure, function-ability, health, for shortening, width, and atrophy of oil emitting glands.
Confocal microscopy exam that showed glands at a microscopic level-cellular level where the inflammation starts - and why we have dry eye. I have learned so very much from him it was amazing as his diagnosis and treatment was based on his tests.
Aqueous deficiency test - The technician dried the eyelid margins, put fluorescein in the eye, then put schirmer strips in being very careful not to touch the Iris as that can cause reflux tearing and skew the test results. She repeats this process 3 times in 10 minute intervals to see if the dye is washed from the eyes by my natural aqueous tearing.
The doctor probed the upper and lower lids of right eye -The technician applied a lidocaine and jojoba liquid to my lids to help minimize the discomfort of the probing, noting the sounds made of each one to the technician. After the probing he used an expresser tool that cleared the glands with a squeezing motion. He indicated he was getting a lot of debris out of the glands. The functioning of the glands had more than doubled after the probing.
Day two he probed the left upper and lower lids and surface cauterized the left punctum. A lidocaine and jojoba liquid was applied to both upper and lower lid and sat for about 10 minutes to lessen the discomfort, although not to bad. He announced to his technician if it was a spongy pop-gritty pop - nothing for each probe. There was no real pain mainly pressure throughout the process. He did not have time to express the glands in my left eye due to our return flight time.
Diagnosis:
Non-Sjogren's aqueous deficiency, delayed tear clearance, allergies, staph infection
Meibomian gland orifice obstruction
Periductal fibrosis scar tissue
Keratinization from lack of blinking
Conjunctival Chalasis of the upper and lower part of the eyelids and orbital back of eyeball.
Greater Occipital Neuralgia which has caused my headaches and Blepharitis.
The functioning glands had more than doubled after his probing. After my visit he was kind enough to stay in contact with me, sometimes daily for a month via email helping me tweak my care program. He seemed to feel that now the glands were open it was about me getting rid of all the things I was putting on my face that I had a sensitivity to. The various comorbidities. So little by little my eyes got better as he had me stop using, all face/eye makeup and lotions on my face, took me off Bepreve drops for allergies, stopped Retaine ointment and try new ones until he determined the right one, had me try various eyelid cleaners, face washes, sterile saline to flush my eyes.
Currently I use only Oasis Tears eye drops maybe once or twice a day and autologous serum 100% twice in the morning and evening. Warm, moist compresses twice a day, Free and Clear Shampoo on my hair, Soothe ointment and Glad Wrap to keep my lids closed at night and lots of water so critical...Per my Doctor I keep records of how my eyes feel daily and if they are bothering me I ask myself “what did I just do differently” that may have caused it. I am still searching for “safe things” to moisturize my face, clean my eyes and to limit blepharitis and styes. Things I don't have a reaction to and possibly a concealer to hide my dark circles under my eyes. I am free of the burning in my eyes but still have occasional dryness which is easily remedied by the Oasis drops I love. I continue to carefully monitor anything I try to put on my face, keeping a journal daily to help me determine if anything I try putting on my face could be causing my symptoms to come back. Also what medication or over the counter product may make my eyes worse.
I am one of the coordinators of the Orange County Dry Eye Support Group, which is a volunteer program that brings doctors together with our 200 members in meetings twice a year. I have seen more doctors than I can count over the 15 years looking for doctors to speak to our group. I am so grateful for each one of them who are out there who have taken their valuable time to learn all there is to learn about treating dry eye. It can be a debilitating, depressing, life changing disease. One doctor who contributed the most is the doctor who initiated the blood draw lab at UCI and the compounded autologous serum at Imprimis in Irvine. Another in El Toro diagnosed me as having Lagophthalmos lid closure problem and taught me to use Glad Wrap to keep my lids closed at night. Lastly, a doctor in Massachusetts taught me about my blinking problem, and lid wiper epitheliopathy.
Last year finding the new doctor has made the biggest difference in how my eyes feel ever. I spoke to many of his patients from all over the US with severe dry eye before my husband and I flew to see him. They told me how their lives had been changed and how he had given them their life quality of life back. They shared with me how they were housebound, wanted to die, could find no one to give them relief until they found that doctor. I also read many reviews about other people he had helped. Flying to a different state wasn’t an easy decision to make at 74 or something I wanted to do but I wanted to get better. I have to say that in 20 years this is the best my eyes have ever felt for the last nine months and I owe it to my doctor. They are not perfect but they are sooooo much better 80% of the time. I still feel the roughness in the upper part of my eyes occasionally which I believe is the conjunctival chalasis he diagnoses as a problem. I may someday need to have it fixed. I do also have have some dryness but it is resolved with my daily treatment and drinking lots of water. However the burning is gone and the dryness is minimal. My doctor is a brilliant teacher, ophthalmologist, scientist, detective and a person who really cares about helping people. He has helped me figure out so many things that I needed to change in my treatment plan and the complexity of this condition. He has taught me that for me “the less I put on my face and eyes the better my eyes feel.” I am so beyond grateful I can’t tell you and so glad that I took the chance.
Judi Beatty
OC Dry Eye Support Group
Orange County, California