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From The Patients...

After speaking with many patients, several requested that I set up a place where they could tell their stories. I have set aside this area so that their stories, in their own words would be related to the world. The following are the patients' unedited comments. In addition, several of these patients have included their email address so that should you have questions/concerns/etc. and would like to get their perspectives and experiences, you can send these requests directly to them. They truly understand what it is like to be in a similar position to yourself and are eager to help in any way they can. I hope that you find this patient perspectives area useful.

Patient Perspectives Art

Patient Stories - Corneal Disease.




Submitted by...  
Glenn Rhodes Corneal Thinning, Irregular Astigmatism

WHEN IS A CLEAR SUNNY DAY PAINFUL?
(They always were, every one of them!!!)

When I was about 6 years old, for no direct obvious reason, I started getting severe irritations in one or both eyes simultaneously or at random. The irritation(s) would last about 1-2 weeks and for days on end there would be absolutely no white showing in the affected eye(s). Commonly mistaken by the public as Pink Eye, that was the grounds for many unpleasant situations over the years. Some doctors gave me sticky pastes and eye-drops for infections. I was scratch tested bloody for allergies and blood tested for diseases (none found). Absolutely nothing would change the frequency or length of the irritations. Up until I was 30-35 my vision was at or near 20/20 without any correction. Then came the complications.

During a routine examination, a local doctor noticed that my corneas were thin. She claimed that the corneas were thinning every time the irritation was present and prescribed steroids (pred forte soon to be changed to pred mild) for long term use with no specific dosage. “Hit the irritation hard at first, then taper off” is all I was told. This was the first time in my life that the length of the irritations was shortened, but at a major cost. With periodic Corneal Topographies showing increased irregular astigmatism, my vision was deteriorating. “Peripheral (or Marginal) Corneal Degeneration “ she kept saying. None of my doctors have been able to specifically define the cause... Terrien's Syndrome, Pellucid's, who knows?... With my vision rapidly deteriorating, my next doctor informed me that it was the steroids that were thinning my corneas. Now what? No specific cause, no available treatment. I'm just "part of an unlucky few cases and by the way, stay away from the steroids". So this brings us pretty much up to date. Without any medication, I am back to uncontrolled painful irritations that last religiously 1+ weeks, but now with thin corneas and best corrected vision right 20/200, left 20/400 with glasses.

When can a beautiful sunny day be painful you ask? Every single one of them were for me. The glare from the sunlight (or any bright light for that matter) is unbearable with corneas like mine. Basically, instead of seeing one bright reflection, with irregular astigmatism you see 10, 20 or more of them, all equally bright. Sunglasses don't help because when the iris opens, my vision gets even worse as I look through more imperfections. At age 47, with other family health issues to deal with, I was forced to quit my job and go into seclusion. Now three years later, I met Dr. Maller.

Already being somewhat aware of Scleral (Gas Permeable) contact lenses, Dr. Maller was quick to recommend them for my condition and explained them in a very straight forward way that I could clearly understand. Some people are okay wearing different forms of contact lenses but believe me, I was the LAST person on this planet that would ever consider putting anything in my eyes with my corneas as thin as paper. Once the lenses were fit to the contours of my eyes and the corrective prescriptions were dialed in, my vision was instantly restored to 20/20 in both eyes. Most importantly, I honestly cannot tell they are even in my eyes (except for the perfect vision of course), not even the slightest sensation. While my corneas are very susceptible to pain, Scleral Lenses do not touch them. They rest on the white part and bathe the cornea in liquid. Removing and replacing them daily was also thought to be an issue but was very simple to learn and again, painless because they don't touch the cornea. Even though I don't recommend trying this, you have no idea what it's like to again be able to stare directly at an oncoming car's high beam headlights and still clearly see the lines on the road with absolutely no glare after seeing nothing but a blinding blur for the last 20 years.

I am now coming up on two months wearing them and have not had a "red eye" irritation yet. While it's too early to tell for sure, this is one of the longest time periods in my life I have not had an irritation and I am hoping for the best. They say that this type of lens has therapeutic advantages for the cornea bathing it in liquid and at the same time isolating it from the environment. With my exact irritation condition still unknown, who knows? One thing is for sure though, my vision is restored 100%, with or without the irritations.

While I'm not a doctor, if you have any questions, feel free to contact me. My email address is   nagrhodes@yahoo.com   If you have a technical question, don't hesitate to contact Dr. Maller through the link on this website. He's generally quick about responding.

Have a nice (bright sunny) day,
Glenn

Glenn Rhodes
Vero Beach, Florida


 

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