I needed to write my story to tell about my long time battle with Keratoconus. I needed to tell how I’ve been trying hard for so many years to find a contact lens solution and avoiding the corneal transplant at all costs. I wanted to let Keratoconus patients know that there can be a solution to such a difficult eye abnormality before going into surgery and going through the long recovery time that a Keratoconus transplant involves. The following, is my story.

I was diagnosed with Keratoconus on my left eye about 12 years ago. I had myopia since I was a little child and used soft lenses for many years without a problem until I was about 20 years old. One day I just did not seem to tolerate my disposable soft lenses and went to the doctor in Caracas to have them checked… That is when the nightmare began!

This is the information about my eyes from 1996 to 2006.

	Right eye	Left eye (this has been my problem eye all along)
(1996) "K" readings	43.75 / 46.25 @ 120ª	36.00 / 53.50 @ 020ª
(1996) Refraction	-6.50 cyl -1.50 X 040ª	-12.50 cyl -3.00 X 125ª
(2002) "K" readings	41.50 / 48.00 @ 140ª	55.00 / 58.50 @ 090ª
(2002) Refraction	-5.50 cyl -4.00 X 055ª	very difficult refraction

           

My right eye was fitted initially with soft contact lenses (complemented with astigmatism correction in spectacles), piggyback combination contact lenses, SoftPerm hybrid contact lens and Perfect Keratoconus Soft Contact Lens obtaining with all of these pretty good vision (20/25).

The doctor diagnosed me with having a Keratoconus on my left eye. I could no longer wear the disposable soft lenses, so they changed me to soft contact lenses complemented with astigmatism correction in spectacles. The years passed until I could no longer tolerate the soft lenses and my doctor prescribed for me SoftPerm lenses, which had a Rigid Gas Permeable lens in the center needed to correct the complicated sight problems of the Keratoconus but with a soft skirt around it to help with the comfort issues associated with Rigid Gas Permeable lenses.

Some years passed, and the Softperms were a great solution in terms of sight (20/25) and comfort. As the years passed, Keratoconus also developed in my right eye but a lot less severe than my left eye, which, as my doctors then told me, was either very advanced Keratoconus or even Pellucids Marginal Degeneration, since they were not sure. I was able to have a “normal life” with my Softperms and when not having them on (I could only wear them for about 8 hours or so) using my prescription glasses, which even though I couldn’t see anything with my left eye, with the right eye alone, I was able to manage everyday living.

But then things worsened. A deep pain in my eyes occurred when taking the Softperms off (oxygen permeability issues, etc.), and after that my eyes felt so tired that I usually went to sleep to cope with it! I started to use them only for certain things, like playing sports or driving at night, since I could only wear them for about 2 to 4 hours. So there started a long, frustrating and expensive search for a new contact lens solution.

I continued searching, trying to avoid at all cost a corneal transplant which my doctors did not recommend, even with the severity of my left eye’s Keratoconus and now what looked more like Pellucids Marginal Degeneration rather than Keratoconus on my right eye.

I am not going to go into all the details and types of lenses tried, because I would be filling too many pages and this would just bore you. First I tried several times any number of RGPs with three different doctors in Venezuela, but all of them failed. It wasn’t an issue of vision but more of a comfort problem. It was impossible to wear those RGPs! For some, immediately after putting them on my eye felt grueling and I just would tell the doctor to take them out. Others I went home with, but after a couple of days giving them a try I just returned them. Even by putting in my best effort and trying to cope with the discomfort, I knew it was not going to be possible to use them. I knew that I would simply just buy them, never to put them on again, and just return to my old prescription glasses. By now my glasses were the only solution, although a very poor one, since the sight was awful, driving or just walking anywhere at night was an ordeal! Playing sports like softball was just impossible.

I then tried in Caracas. Rose K, piggyback combination contact lenses, Perfect Keratoconus SCL, etc., all of them without success.

I always was researching on the net, trying to find any kind of option. One day I found a lab in Israel that made some kind of a new Keratoconus lens that looked a lot like the Softperm, but was improved (more permeability for example). A doctor in Caracas asked for a tryout all the way from Israel. They are called SoFlex for Keratoconus. I was so eager to try them. I thought since they were like Softperms, but better, I would have the great vision the Softperms gave me but with great permeability to eliminate the pain and wearing problems I encountered with the Softperms the last several years. But that wasn’t the story. Once again I was hit with disappointment when trying them. This time I obtained the perfect comfort that RGPs lacked, but couldn’t obtain good vision. I needed cylinder overcorrection in both eyes! OD BC 7.60, -5.00 (over-refraction cylinder - 3.50 X 60ª), OS BC 7.30, -6.00 (over-refraction sphere -10.00, cylinder -4.00 X 120ª).

Later on, I decided to search out Ophthalmologists and contact lens fitters specializing in corneal problems in the United States. In Venezuela, although there are incredibly skilled doctors that treated me over the years, there is a lack of new technologies or research here on Keratoconus. I decided to try and find a solution outside Venezuela (encouraged by my home doctors).

I first went to a very well known eye institution in Miami. On my first visit, they gave me a set of Scleral contact lenses. They were so huge. That, mixed with my fear of “hard lenses” was really a problem. The minute I saw them I knew that they were never going to work, and indeed although I gave it my best, I just couldn’t have them in my eyes for more than three minutes! I don’t understand how anybody could tolerate that huge hard lens!

After that, I went to see a group of doctors in New York City who managed to find for me what seemed at the time, a good solution. They fit me with some special RGPs, and they were far more comfortable than the ones in Venezuela. I also obtained great vision with them, and went back home with new hopes, but of course skeptical after all my failed experiences. Indeed, after a few weeks , I developed corneal edema caused by the lack of oxygen in my eyes with those lenses, so that was the end of them. After two more visits to New York City with the same doctors, even though the edema was fixed with different RGPs, I never could stand them for more than a few hours a day. I just stopped using them and returned to my old only alternative solution… my glasses, even with all the limitations, anger, and frustration that glasses meant.

I then decided to go for the corneal transplant, and scheduled an appointment with one of the “best” corneal specialists in the USA. After spending around 3 hours in the waiting room, and then another couple more being tested and checked by a handful of intern medical students, I finally entered the office of this eye institution’s doctor. After just seeing me for ten minutes, he told me everything that I already knew. He just told me that I was a candidate for the transplant and to think about it… that was it! All of my transplant questions, fears, pros & cons, alternatives, etc. were unanswered after spending all day at that prestigious Eye Hospital, and a lot of money on the “world famed surgeon” or what was actually worse… on a group of interns.

Later on I realized how lucky I was to come out of that Eye Hospital with such regrets and anger. At least for some time, I threw away the option of the transplant and decided to continue my research and try other doctors. That was when I found a webpage of a doctor in Miami, Florida that drew my attention. He had some good successful Keratoconus patient stories, so I decided to give this a last try before finally returning to the idea of a corneal transplant.

That is when I met Dr. Ken Maller, in Ft Lauderdale, Florida. He examined me and proposed to me some options. The first option was a set of RGPs, but custom made according to the “computer mapping” of my corneas. Of course I was discouraged since I had tried RGPs before and although vision was great, the comfort was awful! I knew that I would just return to my old “cant see anything at night but manage” normal glasses, but Dr. Maller encouraged me to give it a try. Well, it was the best fit in over a decade of trying! Not only perfect vision on both eyes but great comfort overall.

I went out very happy with my new “eyes” and also of the feeling of having a great doctor that I felt had a real dedication to his patients, and a goal of finding me a final and good solution to my years of pain and poor vision!

The “custom made” RGPs lasted for a good solid year or so, but the comfort issue started to fail throughout that year and I was starting to use the lenses only at night or for certain specific tasks (beach, sports, etc) …

So I went back to Dr. Maller and he proposed another option… Custom Made Scleral Lenses. When I heard “Sclerals”, I remembered years back to my awful experience with those HUGE lenses and that I was not even able to wear them for two minutes! But Dr. Maller convinced me to give it a try since they were smaller in size (still big compared to RGPs!) and that he thought it was the best option in terms of comfort. Their size made it possible to allow them not to touch the outsides of the eye and cause the irritations I had with the smaller RGPs.

When the lenses came in, I was at first disappointed since I was sure there was no way those big hard lenses will feel good in my eyes. After the doctor put them in my eyes… HEAVEN! It was like a miracle just happened (and I am not exaggerating). I thought I was back at those glorious days of soft and disposable lenses! I even asked Dr. Maller if he put some drops of anesthesia in the lenses first so I could stand them more than two minutes… and he laughed!

Feeling like I was born again (you guys that have suffered so long with this eye disease know what I am talking about) and so happy, I wanted to scream out loud to all Keratoconus patients to give a try to this option! Dr. Maller put me through the eyesight “letters on the wall” typical test. Well my friends, the miracle continued to develop. The vision in my right eye (less worse one) was 20/20 and even better - 20/15 or something like that (I don’t remember). And in my left eye, not 20/20, but almost perfect!

And with both eyes open, it was like a new world opened before me… one in that the trees had perfect leaves and not green spots hanging from them, one in where I could make a long drive with my wife in the car and not having to tell her to take the wheel at night, or being able to see the softball, playing sports, and finally bring up my batting average! One I could go to the beach and not have my usual bad temper because of my eye pain using the other lenses. Seeing the sea clearer, working at my office with my laptop for 8 hours without any pain or headaches, being able to be all day from 8am till bedtime at 12pm with contact lenses without redness, soreness, irritations, or pain. Dreaming again of one day being able to play ball with my son and not drop it because I couldn’t see his throw. Go to a party and dance all night till dawn with my wife and be happy about it and not in constant eye pain and anger!

The list can go on for a lot of pages, and all of that because of the dedication and professionalism of one doctor, and his will to find me a good solution to my illness. It has been almost two years and I have not had one minor issue with the sclerals! Perfect comfort ALL DAY LONG! Wearing them daily from morning till bedtime, even up to 18 hours with them and not a glitch. They are a set of expensive lenses and they need to be taken care of (cleaning, etc.), and some trips back and forth to Miami from Caracas, but for this life changing experience, it is simply priceless.

He definitely saved me from having a corneal transplant, the possible complications and risks involved, and the long and difficult recovery time after a procedure like that.

I cannot thank Dr. Ken Maller enough, and don’t have the words to describe the change he made to my life, finding me a comfortable way to see again as a normal person and erasing years of pain, anger, frustration and time and money spent. I truly recommend everyone with Keratoconus issues to give a try right away with Dr. Maller, and I just hope my experience will help all of you out there who suffer with Keratoconus.