Keratoconus: Valeri - Bulgaria

The World's First Cross-linking Story

Cross-linking Treatment By Valeri Nikolov in Bulgaria

My story begins in the spring of 2003 when I noticed that my vision was not as good as it always had been. I visited a doctor who found that the automatic machine was giving erratic results and could not do anything more. I felt that something was wrong and travelled 500 km. to visit an ophthalmologist clinic at the other side of my country.

They quickly diagnosed the problem - Keratoconus. At that time, they corrected my vision with glasses and told me that it can be corrected better with hard lenses. A month later I visited the first optometrist who happened to be a complete idiot. She could not manage to fit me the right lens. Neither the size, nor the diopters were suitable for me. After reading some posts in kcenter.org, and armed with patience, I continued my journey. I found another optometrist who was aware enough to fit me with the right lens. A year and a half passed. The Keratoconus slowly progressed. I visited the doctors twice to change slightly the diopters. In the fall of 2004 I found that I was no longer comfortable with these lenses. I experienced itching, dryness etc. The right eye started to feel very uncomfortable... At that time I started to search for another solution . I started to use artificial tears, I rested often and limited the time I was using my lenses to 8 or 10 hours per day.

I learned about the Rose-k and Cross-linking...It was January 2005 when I determined to try the Rose K lens.  I contacted the nearest optometrist dealing with Rose K. It happened to be in neighboring Greece at the town of Thessallonike. A month later, I visited the optometrist. They fitted me well using the trial Rose K set. Two weeks later, I had my lenses. They cost 500 euro. The lenses were of really good quality. I felt very good with them and I could wear them again 12 hours per day and even more. I used them just one month as I contacted Dr. Kohlhaas and he told me that I could do cross-linking whenever I decided to. I didn't think twice and arranged a day. It was the 31st of March. I was in Dresden a day before I got a room in the guest house of the clinic. The following morning I met the people of the clinic. They happened to be very nice and friendly people and last but not least, very good professionals.

My Corneal Crosslinking Treatment 

Here I share only my experience and, in some cases, my personal opinion. I will not talk about the crosslinking, what it is and what is does to the eyes. Here I will share my experience during and after the operation. For those who are interested in more formal documents about crosslinking, please find them in the site.  Luckily, there are now plenty of articles describing the nature and the techniques of the procedure. That all is thanks to our friends from the Gustav Carus Clinic in Germany. I visited them in the end of March 2005.

They warmly welcomed me in their facilities. The tests and procedure took half a day as they made exhaustive examination before taking the decision to do or not to do the treatment. They took a cornea topography scan, cornea thickness scan, vision scan and interocular pressure scan. I met Dr. Kohlhaas, who won my respect as very energetic and dedicated professional. He explained to me all the aspects regarding the treatment. Many of them I already knew, but it was good to hear them from himself.

The treatment cost was 500 euro per eye.

The procedure went as follows:

Anaesthetic drops were applied to both eyes.

They put me in horizontal position. Using some needle like tool they did some, what felt like scratches, otherwise said, they opened the epithelium. After that they put the UV light emitters above my eyes and started the light, which I saw as green. Each five minutes they put the famous riboflavin drops. The drops felt really good; otherwise the light felt it was burning my eyes. At the middle of the procedure, they put once again anesthetic drops. I remember the man who was doing the treatment talking to me, which was very kind of him, because this way the treatment went faster and put your mind away from the discomfort and the illumination.

That was it, from a patient’s point of view it is that simple.  From that point, however, comes the long process of recovery which I think is as important as the treatment itself.

I divide the post-crosslinking period in several stages.

1. Right after the procedure.

2. First day after the procedure.

3. Closing of epithelium.

4. Restoration of natural tear flow.

5. Back to normal.

It's a little discomforting, but necessary to say, that the first 24 hours after the treatment are a little tough of a time. I know that there are much harder procedures and surely more painful. However, if one decides to do crosslinking I believe he or she must put the discomfort second place and not pay much attention to it. But let me describe the feelings because I think it is better for one to have an idea what is going to happen.

First thing to notice after the treatment is that vision is very weak. If one chooses to do one eye only, then this is not a problem, but if he or she decides to do both eyes, then this is a little of an issue. The question I asked before the procedure was exactly what vision I would have just after the procedure. Would I be able to see faces, would I be able to find my way out of the clinic? The answer is: Sure one can see the faces and the walls and the door's, so that he or she can find the way out.

I actually found my way to the main entrance of the university clinic quite easily. About fifteen minutes after the operation the anesthetic drop's effect is gone. So it is a good idea for one to go to the guest house or the hotel at that time. It is far more pleasurable to stay in bed with curtains closed, instead of walking around.

Big issue is photo sensitivity. Get yourself very good sunglasses and bear in mind that even the glasses cannot stop the light. I remember being at the passenger seat of the car, with glasses and my jacket over my head, and the light was passing through them and was causing significant discomfort.

The tears are also worth mentioning. After the operation one has much tear-flow. It continues at least two days after the procedure. Drinking water and wet tissue compresses for the forehead will help. Get "strong" food as well. Hopefully your appetite will not suffer. At least mine did not.

I experienced foreign body sensation in my eyes but that was not painful, just alarming. I didn't know if that was normal or if it would fade away... actually it faded away after a day or two.

I recommend anyone who decides to do the treatment in Dresden, to reserve 3 days in the guest house for post-operational recovery; one before the treatment, and two nights for after the treatment. If it is possible, get an accompanying person to come with you so that there is someone to give you a hand.

After first couple of days, the epithelium closes. After that my vision started to restore. I am limited to my own experience and cannot tell what the average recovery time is. I, myself, saw the world a little foggy. After a week that feeling faded away as well, although the vision was still weak.

I also experienced eye dryness. I started using re-wetting drops. If you choose to do so, get the one's with new generation of preservatives like Alcon Systane and Novaritis Genteal. The single dose with no preservatives at all is the best choice. I think that Alcon products are better. At least the best I know.

The first month I used therapeutics lenses. Therapeutics lenses are soft lenses with very low water content and high gas permeability. The kind I got was for continuous use. I used them for a week (day and night) before soaking them for a night. I asked Dr. Kohlhaas if that is ok and he confirmed that it was. I felt very well with them. I recommend everyone to try them (after asking your eye specilist first), as they protect the cornea from dust, and from the lid whilst blinking during the healing. Each blink is pain when your cornea is healing on the first day. I think they helped the cornea, and allowed the faster growing of the epithelium cells. The lens helped me see a bit better during that time.

At the second month point after my treatment, the eye dryness was starting to go away. I used rewetting drops more rarely, but anyway I found that they felt good to use, as they clean the eye from dust and other impurities making my eyes feel fresh. Anyway, I thought it is a good idea to put a drop or two on each eye each morning and evening.

Also I tried soft lens correction, unfortunately with no luck. The soft lens may help a little but not as much as the hard ones. The gain is probably one line. I also tried soft toric, but It turned out that the toric lens would not act as expected, as it would not rotate to fit in place. You may know that the toric lens are expected to rotate by themselves in to position in a certain manner, so that they can correct astigmatism. In my case, however, due to the irregularity of the cornea the toric lens would not rotate at all, but stayed fixed in a random position. That is why I gave up trying to correct with regular soft lenses. I have not tried special soft lenses for keratoconus.

I tried again RGP lenses The Optometrist worked hard and found a fit that I could tolerate. The vision correction was perfect; however, I did not feel my corneas was strong enough yet. That was on the 10th week after the treatment. We recorded the lens parameters so that when a week or two more passed, I could go again to the Optometrist, try a new fit and compare. If it turns out that my corneas are stabilized I will try using RGP lenses.

I visited the Optometrist on the 15th week after the procedure to see if my vision was stable enough. It turned out that the metrics we had recorded three weeks ago were of no value to me as the cornea continued to change. According to the metrics it turned out that I needed flatter lenses. So, judging by the lens and the fluorescent model, it seems that my cornea's continues to flatten even on the fourth month after the procedure.

At the fifth month after the procedure I visited my doctor again and found the following. Left eye was recovered so that it did not need correction at all. Right eye was corrected successfully with glasses. That is something I couldn't dream of before the treatment.

I got my glasses, left eye was 0.5 cyl. 70 deg, right 2.0 cyl.  60 deg. NO diopters at all! I consider this the greatest success, as after two years with contact lenses I really enjoyed only having to wear my glasses, very much! A week after I got my glasses and my vision got adapted to them, I got an even better and sharper view.

...

Today is 13th of December 2006. Almost two years since I visited Dresden and more than a year since I wear the same glasses. My vision is still the same, still stable, no change since the day I got my glasses after getting treated with Corneal Crosslinking.

...

Keratoconus Member and Founder of the Bulgarian Keratoconus Association

It's been almost five years since I returned home to Bulgaria from Dresden, Germany, where kind and professional people at the Carl Gustav Carus Faculty of Medicine did the new, at the time, procedure called Crosslinking and where I had my Crosslinking treatment. As Crosslinking is the first ever treatment for Keratoconus and invented at the Technische Universität Dresden, it was Dresden, the natural choice, where long ago I had my Crosslinking treatment.

These where memorable days for me as they changed my life. It was the time that I learned not only from friends from our forum, but also from my personal experience, the subtleties of the condition. It took me two years to realize from research that hard lenses are more dangerous than is usually discussed, and they should be "handled with care” by being used with extreme caution and attention. This was the time in which my eye sight worsened and the cornea's of my eyes distorted, because of the constant rubbing that I experienced with badly fitted hard lenses (which I did not know at the time was happening). I had just found a good optician that fitted me perfectly in hard lenses in Greece, when I contacted German professionals, and after which Corneal Crosslinking was performed to treat my Keratoconus one time.

After the first months passed my vision stabilized. I am glad that after five years I can say that my vision has stayed the same. I was fitted with glasses once my vision had stabilized, and since then I am still wearing glasses when before only hard lenses could correct my vision. Recently the parameters for my glasses were slightly changed; this was because my current optician did a better refraction examination for the fitting of my glasses, not because the eye had changed. To say the least, I am eternally grateful for the vision and the life I have now. I am still using glasses reaching 100% correction from both eyes.

I still sometimes remember that my eyes are not perfect, but also that they are perfect considering the fact I can wear glasses now fully, and this was only due to having Crosslinking alone as a treatment, which was a great bonus in my case. To me able to wear glasses comfortably without the need (or the need to endure the on-going risks) of medical contact lenses is nothing short of an absolute blessing to be able to do, and everyone's right to be able to do with out the need for not only invasive contact lenses but also invasive surgery, and the chance for this should be made available for them. I find my eyes are more relaxed while reading than before treatment, with there being now better uncorrected vision also. You know, I stay 9 to10 hours per day in front of the PC at work. I am still trying to change this habit, but work is something which is mandatory for me..

In the early days before I knew not to, I used to rub my eyes using fingers in to my eyes when using the palm of my hands would have been better, now I know its better to avoid any trauma to the eye altogether. During the time I had to use hard lenses - whilst putting them in to my eyes and taking them out, there was plenty of friction and rubbing caused as well. I used to put pressure on my eyes without realizing the damage I was doing. After I changing my attitude, and after my Crosslinking treatment, I managed to stabilize my vision and from that have been able to live a normal life up to now. It is a great feeling to finally being treated and having eyes which are strong now at the front, when previously they where not. What was needed from my side to achieve this was so little and simple. I just started handling my eyes with more care, and by doing so, getting the eye care that was required as equally, and as early and as quickly as I could, which is what reaped its rewards. What I was sure about was since my first report on my treatment, Crosslinking would (and has) become available to patients globally.

There is no way to predict the distant future to come, but reading the news of the latest advances in medicine, I feel very positive that most and hopefully all of us will cope in a certain way with this condition, and we will have the chance to live our lives, full of value.

All content is subject to change from first appearing and is intended as an informational series and should not be used as a substitute for medical advice.