Keratoconus Group | Support Community and Blog

Keratoconus: A Journey for Answers

Hello, I’d like to introduce myself. I am Bekah, a 42 year old female who was diagnosed with Keratoconus more than 6 years ago. I'd like to share with you certain details of my journey.

It was not until my mid-thirties that I stumbled into the realization that my vision quality had been compromised. My discovery occurred arbitrarily one day while I was at the Department of Motor Vehicle (DMV) taking a vision screening to renew my driver’s license. When asked to cover one eye and read the objects across the rows of the chart I was able to do so in my right eye but in my left I could not clearly focus on any object well enough to correctly identify what I was looking at. It did not occur to me at that time that my vision could be the cause of the problem. I suspected that there was something defective with the equipment used for the screening. Regardless, however, of my suspension there was no way I was going to be cleared to renew my license without passing the test. It became awkwardly obvious that I would need to return to the DMV to retest with some form of corrective lenses. I left the DMV office with a certain sense of disbelief and was resistant to accept what had been revealed to me.

Days after my failed attempt to renew my driver's license I consulted with an optometrist who ran various tests and examined both eyes very closely. He summarized his findings with a diagnosis of Keratoconus in my left eye, describing that the shape of my eye was more of a football type shape than that of a normal round shape. He stated that the disease was in an early stage and he explained there was no known cause of the disease nor a cure. He recommended that I try a hard contact lens and he was honest to suggest that this option may not be effective to improve my vision. Being that Keratoconus causes steepening on the cornea he felt that this option was worth a shot, in the least the lens might work to stabilize my cornea and possibly slow the steepening.

Weeks later I returned to the optometrist to try on the prescription lens. Wearing the lens I completed a simple vision screening to test the results. I didn't experience an apparent difference right away but after a week or so of wearing the lens it seemed that there was some slight improvement. Shortly thereafter I returned to the DMV for a retake of the vision screening. I successfully passed the screening that time and was granted renewal of my license with a restriction requiring me to drive with corrective lenses.

A year or more passed before I went back to the optometrist for a routine eye exam. I made an appointment because I was eager to report to the doctor that the hard contact lens was uncomfortable and didn’t prove to be effective enough to compromise comfort for an unnoticeable improvement. I’d formed a conclusion that either my vision quality had further diminished since my last visit or the lens had not really even been effective despite once thinking so.

During the exam the doctor told me he felt fairly confident that he could get me better correction with prescription glasses. I trusted his input and went with that plan. I wore glasses faithfully for weeks and months to follow yet never seemed to feel there was a noticeable difference. I’d begun to accept the reality of my condition, that there was little that could be done to remedy the situation. The few options known to me at that time had been considered, attempted and were not helpful.

Several years passed and rarely did I think about my Keratoconus diagnosis. The disease had not caused me any major limitations so I had no reason to fret about it. However, subtlety over the past year and half, I started experiencing an increase in blurriness and new symptoms were being presented: double vision, white spots and other rarities were happening. Certain simple daily task that required visual clarity were becoming difficult due to the change in my vision. Out of desperation to find out what was going on I turned to the internet. My desire to find answers drove me to research about the disease. To my surprise I learned that new advancements in technology over the years had developed and effective treatment options for patient with Keratoconus were now available.

Collagen Cross-Linking had been tested on patients in the United States and had recently been approved by the FDA. In addition, Intac Corneal Inserts were reported to be widely used by patients with Keratoconus. I had not been aware of these options earlier and after learning about them I began to feel optimistic. I continued my pursuit to educate myself. I read articles, spoke with numerous specialist, asked tons of questions of all sorts of people and I persistently searched to find the most credible qualified ophthalmologist who specialize in the treatment of Keratoconus.

A journey of discovery continued to pursue. I was on a mission for answers. I became obsessed. I researched, researched and researched some more.

Many more days and months passed. I become more and more knowledgeable. I consulted with several specialist across my lovely state of Texas, ophthalmologist in San Antonio, Houston and Dallas, and even reached outside of my state to consult with an expert in California. Across the board all recommended Cross-Linking for treatment of moderate to severe Keratoconus. One doctor recommended Intacs as well.

I finally settled into a game plan. I made a decision to proceed with the recommendation to have Intacs implanted in my left eye, the procedure was attempted but for unknown reasons the procedure did not go as planned and Intacs were never implanted. I could not image going through the procedure a second time for the risk of this procedure seemed far too great and I had zero interest in continuing my care with the doctor who recommended the Intacs. The entire Intacs experience had not been a good one so I adapted part of my game and nixed the Intacs option.

Moving forward with Plan B I continued my relentless search to increase my awareness of the FDA approved Collagen Cross-Linking. I found that doctors perform a variety of Cross-Linking methods, some with "Epi On" and some with "Epi Off." It became evident that it was in my best interest to be well-informed and to know the specific details of the correct way Cross-Linking was to be performed in regards to the criteria approved by the FDA. I continued to ask questions of numerous specialists who were reported to offer the Cross-Linking procedure for patients with Keratoconus.

After consulting with a fantastic group of ophthalmology professionals in Houston, Texas I decided to seek treatment from their specialists despite their office being 189 miles from my home. It did not matter the distance I'd need to travel to receive quality care.

Cross-Linking had been the consistent recommendation. It was advised that I schedule surgery sooner than later due to the rapid decline in my vision. Immediately after my first consultation in Houston their office began the process to get authorization from my insurance. It was quite an ordeal to get authorization from my insurance for the Cross-Linking procedure. My insurance denied the initial request for authorization so the doctor's office filed an appeal with my insurance, suggesting that the procedure was of medical necessity.

It had been mentioned to me numerous times that the procedure was costly and that few insurance companies authorized the procedure. It was unfortunate that this was the case as Cross-Linking had been proven to be highly effective to slow the progression of the disease. I was coming to grips with the thought that I would need to pay out of pocket for the costs of the procedure.

Much to my surprise months later my insurance returned an approval, granting authorization for the procedure. This was the first time my insurance company had approved the Cross-Linking procedure. It felt that the outcome was overdue but the final response made the wait seem worth it. This approval was a huge win not just for me, but others too.

I had Cross-Linking done on my left eye in July of 2018. Recovery has been slow as predicted and the results appear promising.

The greatest lesson I've learned from this drawn out experience has been that self-advocacy and perseverance is absolutely necessary when it comes to our health. We must fight for ourselves, our causes are well worth it and any battle scars we may endure along the way may be used for good. Don't let anyone dictate your destiny. You have the right to seek quality care for yourself.

Ask questions to get answers.

This is your life, your health, your journey!

Share to spread awareness!

3 comments:

  1. You are amazing! Thank you for sharing your story to help and encourage others!

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  2. You are inspiring! So proud of you! Great job!

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  3. I have watched you in your courageous journey. Thank you for not being afraid to do the research and to stand your ground for quality eye care. You have paved the way for many others and I am proud of you!

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