Monthly Archives: January 2013

THE SUN IS BURNING MY RETINAS & OTHER POST-CXL OBSERVATIONS

Image Source: http://www.brooksidepress.org

It seems like it was just yesterday that I had bilateral, “epi-off” cross-linking (CXL), but I am just shy of 5 months post-op this week.  My recovery has been beyond slow and rather atypical, so please don’t assume you will have the same issues.  If you are having them and found my post, then great—there are more of us out there.

As I’ve mentioned in prior posts, I have an unusual form of KC that hits later in life and progresses extremely fast.  Also note that thanks to keratoconus, which did have a silver lining, I was finally diagnosed with Ehlers-Danlos syndrome (EDS)—a genetic connective tissue disorder that presumably caused my KC and is also causing the slow healing.

Aside from the pesky dry eyes, which I wrote a whole post on, my biggest gripe at this point is with light sensitivity.  It has slowly improved with time, but it just seems abnormal to be dealing with this problem still, although a fellow blogger who had her CXL around the same time as mine has the same issue still, too.

Following CXL, any light source was a problem and I saw sparklers and halos around anything that emitted light.  Then there is glare, which I lump into the same category and is still a bit of an annoyance now.  However, I recall not being able to even look into the silverware drawer the week I recuperated from CXL at my mother’s house.  So, as long as I’m not dealing with glare from the sun, I won’t complain about trying to sort through my coins.

At this stage of the game, I have two big grievances with light sensitivity.  The first involves using a computer due to the bright, white screen.  For weeks after CXL, I couldn’t even open my laptop, but it’s still a nuisance now even if things are getting better.  I’m not an IT person, but one of my fellow bloggers—who doesn’t even have KC—really helped me out with her comments.  She suggested I adjust my screen’s brightness and other tips.  Seriously, if you’ve never dealt with this, why would you think such an option existed on your computer?

Needless to say, one problem has been semi-resolved and I also learned I could blow up my entire operating system! That has been great since I can’t wear contacts still.  If you have a PC, you can easily tinker around with your computer via Control Panel > Appearance and Personalization > Display (or at least that’s how it is in Windows 7 land).

My second issue involves seeing things outdoors during the day and driving.  Regarding the latter, I can drive at night now although headlights are irritating, but I absolutely cannot drive in the day due to the sun.  I live in the desert SW of the U.S. and the sun is usually a big ball of intense light, even though it’s freezing cold now.  I get a “whiteout” effect—almost as if I were constantly driving west as the sun were setting.

The other odd thing is that while I’ve had this massive improvement in my visual acuity, I have typical, keratoconus vision with ghosting outside in daylight, which just adds to my reluctance to drive.  This has improved drastically too, but before CXL, I could get one good drive in 1st thing in the day. After that, I shouldn’t have even been on the road.

I am still healing and my vision is still fluctuating a bit, but I have stable vision throughout the day due to the cross-linking and that is wonderful.  I also am noticing that I am starting to be able to read some “fine print” on things, although if it’s too small I struggle and get a headache between my eyes.

While my visual acuity jumped to 20/400 post-CXL, I’m currently at about 20/40 in both eyes, although that last line is a struggle to read.  Pre-CXL, I had monocular vision and was only using my better eye—now my slightly worse eye, which was at 20/60 and rapidly progressing like my other eye, which was no longer functioning.  Sort of confusing.  I wish I could explain it all in diopters, but the clinical trial follow-ups don’t seem to include a refraction.

So, aside from the horribly dry eyes, my hair that is still falling out from the steroid drops months after stopping them, and the light sensitivity and inability to drive a car during the day (huge problem!)—I am so glad I was able to max out my credit card and be one of the lucky few to get into a CXL clinical trial in the good ol’ US of A.

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AN AILMENT CAN HAVE A SILVER LINING (I THINK)

Photo Source : Henri Huet (www.entrezlesbois.blogspot.com)

I am not a positive thinker, nor am I a cynic.  Rather, I refer to myself as a cautious optimist.  I don’t like the idea that “everything happens for a reason” because it is a hard pill to swallow when something bad happens and you’re stuck muttering, “Why me?” over and over again.  So, in an effort to play this hand I was dealt, I tend to not be a trusting person, I’m ridiculously superstitious, and I refrain from saying, “What else can you put on my plate?” because something else will land there.

I was pondering many things the other day.  Is there a timing to bad things happening to us; is there any rhyme or reason? Does fate really exist?  I’ve tried to write that off. Why do good people get ailments and diseases that so negatively change their lives or take their lives forever?  It happened to me, after all.  For some reason, an old memory came to mind.  I remembered an X-ray from my childhood and some of my questions were answered.

In 1978, my parents and I moved into a new home that my father, a general contractor, had built.  He left the daylight basement unfinished, concrete floor and all, and I spent hours in that oddly-shaped room roller skating to disco on the radio. On one wall was a beautiful, black lacquered cabinet that had belonged to my great-grandfather.  It was a treasure chest of sorts and held all of my father’s memorabilia.  He had his high school yearbooks, a metal dog collar that said “Waif,” his beloved, childhood pet Boxer, and a big, film X-ray.  I would look through his things and wonder about this X-ray.  Why was it in there?

The X-ray was of my father’s small intestine.  It was from the summer of 1962, not long before he grew out his kinky hair and “conked” it (a chemical relaxer) to look like The Beatles. He was 17 when it was taken and was a recent high school graduate working at the World’s Fair held in Seattle that year. The X-ray revealed a duodenal ulcer that took a year to heal due to the lack of effective medications at the time. Apparently, antacids were all that were available to cure an ulcer in the early ’60s.

As required by law, my father registered with the Selective Service when he turned 18 in the fall of 1962.  He was in his 1st year at the University of Washington with plans to major in accounting due to his brain being a human calculator. Unfortunately, my father wasn’t a very good student and decided to sleep late instead of going to school to take his final exams for his 2nd term.  It literally was a mistake that could have cost him his life.

1963 was a pivotal year in America.  President Kennedy was assassinated and the Vietnam War was escalating.  A draft had already been established.  My father was issued a draft number, but being a university student could keep you out of the war in the early years.  When he dropped-out, however, the draft board sent notice that his number was up. Knowing my father, he must have looked into every way he could to get out of being drafted.  Even his shorter stature was above the cut-off mark and he knew it.  It seemed he was out of options.  My father, however, had one thing the draft board might not like: a duodenal ulcer.  Perhaps it had just healed, but it could come back and with records from a good physician, the ulcer could be a golden ticket out of Vietnam.  Make that a silver ticket.

My father showed up for his appointment with the draft board with a giant X-ray under his arm and sweat pouring out of his armpits.  Would the ulcer suffice?  Would he get medical clearance and be saved from certain death in Vietnam?  In the end, it did.  I think they took one look at this short kid with severe anxiety (all that sweat) whose only athletic talent was playing on his high school’s golf team and figured he’d be more likely to shoot himself than any Viet Cong hiding in the jungle.

My father is now 68 years old, still nostalgic, and still has that X-ray.  He’s a smart man, but not a deep thinker so I do that part for him.  He knew that ulcer had a deeper meaning though, which is why he always kept that old black and white film of it. As for the ulcer, it never did come back, but my father got GERD instead.  For years he’s been on proton pump inhibitors (PPIs) and heartburn-free thanks to modern medicine.  For him, putting up with a burning pain in his gut and drinking and chewing chalky antacids around the clock for a year changed his fate in life (alright, so maybe it exists).

The ulcer had a silver lining.

I honor the bravery of every Vietnam Veteran and the memory of those who never returned home.  This is a true story and it was necessary to write about the sentiment many young men had regarding the draft at that time.

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DRY EYES WITH NO END IN SIGHT

Image Source: http://www.advocurenf2.org

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.

Article Source: https://www.eyeconx.net/wiki/mediawiki-1.15.1/index.php?title=Meibomitis

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.

Article Source: http://EzineArticles.com/6050685

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 ophthalmic emulsion for the treatment of dry eyes.

Article source: http://en.wikipedia.org/wiki/Ciclosporin

From the manufacturer:

RESTASIS® Ophthalmic Emulsion is a prescription medicine that helps increase your eyes’ natural ability to produce tears, which may be reduced by inflammation due to Chronic Dry Eye.

Article Source: http://www.restasis.com

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?

Please don’t try this at home.

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