Will my eyes ever have tears again? Does anyone know the agony of having eyes that are as dry as a bone? Am I the only one who has had this adverse side-effect from epi-off collagen cross-linking (CXL)? Why can’t I find any answers, even from my doctor nearly 4 months post-surgery? Will I spend my life with onions taped under my eyes to get them to water?
Let me preface this by saying that I had a dry eye problem before I developed keratoconus. Six years ago my eyes became very dry and I was having symptoms such as burning, irritation, pain, infections, my eyes being “glued” together in the morning, and whatnot. I ultimately was referred to my current ophthalmologist 5 years ago and after a thorough exam, he told me I had severe meibomitis and it could lead to corneal ulcers if we didn’t get it under control. I had what?
Along the margin of the lids there are a series of small sebaceous glands called the meibomian glands. They create and distribute an oily substance called lipids. Meibomian gland secretions help keep the eye moist and protect the tear film from evaporation. Upon blinking the upper lid comes down presses on the oil and pulls a sheet of oil upwards coating the tear layer beneath to keep it from evaporating. Meibomitis refers to dysfunction and inflammation of these glands. Oil production by the glands decreases and the oils that are produced become thicker (looking like toothpaste). The reduction in the quantity and quality of the oily layer causes the tears to evaporate more rapidly and this leads to symptoms of dryness burning and irritation especially upon awakening.
So, for the past 5 years I was on one protocol and drug after the next to try to control the meibomitis. Nothing really helped and I just dealt with it. Since meibomitis affects the lipid, or oil, layer of the tears (see the diagram above), it made my tears too watery, which is very different from my current complaint. As a result, I had “dry eyes” that watered to the point that tears ran down my face. This is because I essentially had no lipid layer (oil) in my tear film to give it viscosity. How ironic and irritating, but boy do watery eyes sound good right now.
Somewhere between dealing with the meibomitis and the freshly diagnosed keratoconus, a new ophthalmologist started practicing at my clinic. Due to my upcoming CXL last September, I decided to make my doctor happy and get a new treatment for meibomitis called IPL (intense pulse light), which is normally used for dermatological conditions. This new doctor was going to be doing the IPL procedures and I booked an appointment, even though it’s not covered by insurance.
This is where 2 brains are better than 1. He disagreed with every treatment my regular doctor was doing since I also have rosacea and it had spread to my eyes. Ocular rosacea can cause meibomitis and doing things like putting hot compresses on your eyes twice daily makes any type of rosacea worse it seems. IPLs were the way to go. Here’s how this fascinating, yet rather painful and nasty treatment works.
MGD [meibomitis] treatments with IPL equipment select a narrow band of light wavelengths (500-800 nm) to produce heat on the skin of the eyelids. The minuscule blood vessels directly under the epidermis take in the light and as their temperature rises, the congealed secretions of the meibomian glands begin to melt and the glands open up. The doctor then applies some pressure on the glands to remove all the troublesome secretions. The heat also drives out skin and eyelid microbes, such as parasites and bacteria that can exacerbate MGD [meibomitis]. If you think of the time-tested warm compress, you’ll find the IPL device is essentially its high-tech version.
The new doctor gave me my first IPL treatment 1 month before my CXL surgery. He thought I would be a great candidate for IPL due to having ocular rosacea, fair skin, and dark hair. I thought I had won the jackpot for once. Normally, results aren’t noticed after the 1st treatment, but I did notice some improvement in my tear quality. Oh, I was so excited! Then I had the CXL and the water layer of my tears disappeared. I’m also having a very slow recovery, which I presume is due to poor wound healing related to Ehlers-Danlos syndrome, but why is no one familiar with this problem? Am I really the only one?
Since my surgery, I’ve had 2 more IPLs with more on the way, all 4 tear ducts plugged (already had 2 plugged), used every artificial tear known to man, had a chronic rash under my eyes from the aforementioned drops spilling out of my plugged up eyes, and gone through at least 35 tubes of eye ointment and gel, which is what I’ve resorted to in order to keep my eyes moist. It looks great having all this goop in your eyes, by the way. Now my doctor has me on Restasis® drops, which I had resisted for 5 years. The active ingredient is cyclosporine.
The immunosuppressive effect of ciclosporin [cyclosporine] was discovered on 31 January 1972. In addition to transplants, ciclosporin [cyclosporine] is also used in psoriasis…and, infrequently, in rheumatoid arthritis and related diseases, although it is only used in severe cases. It is commonly prescribed in the US as an ophthalmicemulsion for the treatment of dry eyes.
It usually takes 3-6 months to even see if it works and is not cheap, even with insurance. Due to side-effects from Restasis®, my eyes are red and irritated, full of broken blood vessels, and burn all the time. I’ve been on it for 1 month with no results and after the continuing nightmare of my hair falling out due to the ocular steroids post-CXL, I’m wondering what Restasis® is doing to my body?
One benefit, unless it’s my imagination, is that I can eat spinach again. I normally would scratch myself silly after eating even a leaf of spinach. Is it a miracle cure for my plethora of food allergies? Speaking of food, I tend to eat a Mediterranean diet and am wondering if I can just ditch Western medicine, sterilize my 5-star olive oil, and pour it directly into my eyes?