We recently stumbled upon an excellent heartfelt post that one of our patients shared in a private Facebook group. His words really convey the significant emotional pain that many of our scleral patients have to deal with and the enormous toll it takes on everyday life. He also shares some good practical tips on living with scleral lenses as well as some solid advice on choosing a scleral lens specialist. We reached out to him and asked if it would be ok if we put up a copy of his great post on our website. With kind permission, please find his post below:

This lengthy post is for someone new to scleral lens wearing and for someone with significant vision challenges. It’s the post I wish someone had written for me when I started my lens journey.

First off let’s talk about REGRET. If you’re like me and landed up with a permanent corneal disability due to elective surgery, you’ll be intimately familiar with the feeling of deep raw regret.

Most likely this regret will be accompanied by an intense feeling of guilt and a never-ending ceaseless inner voice that constantly says “Why did I?”, “Why me?”, “If only I could go back and change it?” or “Why didn’t I do more research?”, “How could I have been so stupid?”.

Sound familiar? – I bet it does!

You will probably also feel extremely angry….most likely with your surgeon, the laser eye surgery medical community or your eye doctor…but MOST of all, angry with YOURSELF.

The worst part is that every time you open your eyes all these feelings come rushing back in a wave of realization that forces you to acknowledge you’re no longer, nor will ever be like the normally sighted person that you once were.

You feel permanently broken; then the darkest depression sets in and holds you tight, you pray for the release of sleep, as in your dreams the world is normal and you can see yet again. This depression envelops you, it sucks you down into the deepest recesses of despair….

I know, I’ve been there folks. Bigtime!

Let me tell you, this cycle of despair is TOXIC, it will eat you up and destroy every relationship that you truly care about. The sooner you can accept your new reality the better.

Hear me when I tell you this, you can not change what happened. Move on with your life, the old you is gone, embrace the new you…accept it and make the most of your situation.

Remember you are not your body, don’t let it define you.

Most of all…forgive yourself and don’t live your life as a victim.

SOME GENERAL TRUTHS:

There is no magical fix that will restore your pristine virgin cornea.

Technology that promises new miraculous cornea breakthroughs are so far off in the future, it’s irrelevant to your present life.

Science, ophthalmology and medicine are best guesses, no one has all the answers. In 20 years time, science will look back and think today’s practices and breakthroughs are archaic and stone age.

Today and for the foreseeable future, 95% of irregular astigmatism and HOA corneal vision issues can be significantly helped with a well designed and custom-made scleral lens. For me the benefits were dramatic.

Additional invasive surgery to your cornea seldom helps and in fact from what I’ve observed, mostly makes the situation worse. Avoid surgery at all costs if you can, and always research extensively.

WISDOM FOR PICKING YOUR SCLERAL LENS

Save yourself some time, money and frustration, don’t learn the hard way like I did. Go straight and in-person to visit a scleral lens expert.

Don’t go near any optometrist that wants to try fit you with a generic trial lens method. It will be a waste of time, money and ultimately will leave you with less than stellar vision and a lens that does not fit properly, irritates and is uncomfortable.

Most optometrists are simply generic middlemen that take a slice of revenue by facilitating the lens delivery between you and the company making the lenses, making you wait weeks or months for the privilege.

To give you an idea, one so-called specialist that I saw who tried to fit me using the trial lens method told me if he could not get my vision acceptable I would probably need to undergo cornea replacement surgery.

Let that sink in….

Guys, if you have a special condition, for God’s sake go to someone who specialises in scleral lenses 24/7 as their primary career. Someone that can look at your cornea and have the wisdom, knowledge, expertise, experience and equipment onsite to counter your aberrations and make you a lens that works optimally and is comfortable to wear.

You should go directly to someone with skills finely honed over an entire career of working difficult cases just like yours, day in and day out. Remember these people are truly master artisans, designing a scleral lens with finely tuned optics is an art form. Most of the time I’m unaware that I’m even wearing my lenses.

You will likely need multiple lens iterations to finely tune and tweak your lenses to perfection. For me I went to a specialist in Texas that makes custom sclerals daily, you see him every day for a week and each day you get a newly made lens that has been tweaked in CAD(computer-aided design) both for optics and for fit to improve upon the previous day’s lenses. My results going this route were stunning, to say the least, I landed up with 20/15 vision in each eye and all my aberrations and night vision issues eliminated.

To give you an idea how epic having 20/15 vision is, I often see details at a distance that normally sighted people with 20/20 vision simply can not see. With my lenses out I can hardly recognize peoples faces right in front of me, my right eye no longer has the LASIK flap as it disintegrated years after my LASIK procedure. The difference in vision is dramatic, to say the least!

I remember being overwhelmed with emotions the first time the lenses were put in, I remember sitting in the waiting room looking at my iPad’s Retina display and being shocked at the detailed crispness and quality of the screen. That night I sat in the parking lot of my hotel gazing at the moon and watching the little lights blink under the tails of passing aeroplanes. This was after 2 years of not being able to see, as you can imagine this was truly a miraculous moment for me and something I will never forget!

I wish I had just gone to him directly in the first place. Don’t make the mistake I did and waste a year or two learning the hard way. It is now 3 years later and I am still wearing the same pair of lenses but will probably order a new set for delivery via UPS in January.

Also, don’t be daunted by the idea of wearing scleral lenses, rest assured insertion, removal and lens care for most people become second nature and automatic very quickly. At first, it took me an hour to get my lenses in without bubbles, now it literally takes me about 30 seconds to put both lenses in and about 20 seconds to take them out for cleaning before bedtime.

This is what I use and what has worked the best for me:

Lens Insertion Saline: Purilens Plus(Preservative Free)

Overnight Cleaning: Alcon AOSEPT Plus

1-2 times a month deep clean: Menicon Progent

Dusty weather lubrication: Allergan Cellufresh(mini vials)

ADDITIONAL TIPS:

Always ensure your hands are properly clean when handling lenses or saline. IMPORTANT!

Store your lenses and sundry in a glass container with a lid in the bathroom to keep it free of dust.

Keep 1-2 vials of Cellufresh in your wallet or purse for wetting your eyes in dry weather if you are out and about.

Make up a mini travel kit zip-up bag that contains a plunger, lens container and a couple of vials of saline. Very useful for e.g. when going over to a friends house to swim…etc.

Give your eyes a break once a month, take your lenses out for a day and relax with something like an audiobook.

Don’t be paranoid that people will think your eyes look different, I’ve been wearing mine for years and I’ve yet to have someone notice that I’m wearing them.

Never rub your eyes with your lenses in…(no duh!).

That’s about it, hopefully, you found this information helpful and most of all don’t give up hope, there is help for you and a way to restore quality of vision and a bring back normalcy to your life with professionally made custom sclerals.