In 1996 I had severe keratoconus (KC) and felt very secure that I was about to be evaluated by the top corneal specialist in Arizona.  I could tell he was well regarded by my other medical staff.  I also took comfort in the fact that more than one person told me that he was conservative and only recommended surgery when all other recourses had failed.

Therefore, it was a great surprise to me that after my second appointment he recommended that I put my name on a corneal transplant waiting list.  He also told me that since I was only age 20, my eye disease would likely come back.  However, I was not to worry because I could have as many transplants as needed later in life.  I didn’t know it at the time, but I was very fortunate that I did not have insurance to cover the surgery.  Several years have passed, and without surgery, I now have corrected vision of 20/25 in my left eye with the assistance of rigid gas permeable contacts.  A disease that is supposed to be degenerative has dramatically regressed.  Once again, I can live my life like any other normal vision person.  In reality, my vision isn’t any worse.

However, in the beginning, I suffered like most other people who have advanced KC.  KC is a disease in which the cornea is wrinkled like a raisin.  It makes it very difficult to see because light is refracted everywhere, similar to a prism.  Another characteristic of the disease is that the cornea becomes conical, or steeper in shape and bulges out.  Nobody knows what causes KC, but it does have some genetic links since it tends to run in families.  I have a 10% chance of passing it onto my children.

Original Diagnosis

I think I first started developing KC when I was 12 years old.  (It is very sad that this is a disease that usually manifests in young people at puberty.)  It was not caught for another seven years because my doctor did not have sophisticated enough equipment to detect the disease.  My right eye has a mild case of KC and has always been close to 20/20 unaided, so I never really noticed the poor vision in the left eye.  That is until one day at age 20 I went to renew my driver’s license, and I could not pass the vision test in the left eye.  Luckily, in Arizona, you only need to pass on one eye.  (Well, maybe lucky for me at the time, but not the other drivers.) 

I went to see an ophthalmologist, and that’s when my trouble really began.  They took a corneal topography, which is like an elevation map of the eye.  Of the people who develop KC, only about 20% of the cases ever become advanced.  My left eye was clearly in the severe stage.  They immediately fit me with rigid gas permeable lenses (a type of hard contacts).  This provides the eye with a smooth shape, while soft lenses will only drape over the irregularities of the eye.  Literally, the hard contacts become the eye’s new cornea.

Contact Lens Intolerance

The acuity in my left eye did have a significant improvement from 20/200 to 20/60.  Unfortunately, I felt a sharp pain in my left eye almost the entire time I was wearing my contacts.  Many days I would just wear the lenses a few hours, and I could not take the pain anymore.  I just had to pop the left lens out.  Anyone who has worn hard contacts can tell you how annoying it is to wear only one lens.  If I wasn’t in pain, my eyes were constantly dry.  I was using the maximum amount of eye drops that the bottle said was allowable.  I wasted at least 25% of my time thinking about how uncomfortable I was.

I went back to my doctor and complained about the pain, but I could tell she hadn’t the faintest idea what to do with me.  After several months of the pain, it was getting hard to get up the morning and simply exist.  I was feeling very frustrated that I had no control over my situation.  I hate to admit it, but I became hopeless and despondent. 

Recommendation for Corneal Transplant

Then, came the day I will never forget- the day the corneal specialist urged me to put myself on the transplant list.  Transplants are reserved for the extreme cases where all other alternatives have failed.  Basically, the eye is so misshapen that the cornea is sliced off, and a donor’s cornea is sutured on.  Like any other transplant, the body can reject it at any time.

I really wanted to do it; I would have done anything to get out of the pain I was in.  It would have been a big sacrifice for me because I would not have been able to work long periods at a time.  (The recovery period for transplant surgery is a year because the stitches are gradually removed over this time period.)  I had one year left in college and already been offered a position at a prestigious public accounting firm upon graduation.  I kept asking myself if I really wanted to give that up and move in with my parents for a year.  Fate actually made the decision for me.  The wait for a donor was about a year.  By this time I would be graduated and have lost my insurance coverage under my parents’ policy.  I called the insurance company to see if this would qualify as a pre-existing condition if I reapplied under COBRA and discovered that it would.  I went back to feeling sorry for myself.  It wasn’t that hard since I had already been doing it for months.

KC Research

I started writing a 75-page paper on KC for a school project.  I learned more about KC than many doctors, but I still hadn’t found out anything to help myself.  I made a web site for myself and included a page on KC.  I started receiving email from all over the world of people suffering.  It was then that I realized there were many people with KC much worse off than me.  Kids at age 13 needing transplants.  At least I had one good eye, but some of the kids couldn’t even see well enough to live a normal life.  Their parents would write me with heartbreaking stories.  Then, one day I received an email off my web page from a stranger that changed my life.  He told me that my case sounded a lot like his, and I should see his doctor.  He gave me the doctor’s name, number, and address.  Oddly enough, the doctor was only about five miles from my house. 

I decided to make an appointment with his doctor, figuring it couldn’t possibly get any worse than it already was.  The doctor took a look at the fit of my contact lenses and became very angry.  He told me I had a high tolerance for pain.  He then explained to me that the current textbook methodology for fitting KC patients was outdated, and that was why I was in so much pain.  According to academia, the lens should be fit using the measurement of the steep part (or nipple) of the eye.  Unfortunately, because the keratoconic eye is so misshapen, the lenses often have trouble staying balanced on the eye.  (Imagine trying to balance a saucer on the edge of a football.)  Thus, the guidance suggests fitting the lenses like a suction cup.  Well, all this really did was trap tears in my eye.  Tears are acidic, so basically I had burned a pit in my eye.  The pain I had been experiencing was actually the burning sensation! 

Regression of the Condition Using a Flat Fit

The doctor had been taught to fit KC using the measurements from the healthy, or flatter, portion of the eye that is further out from the steep part of the cone.  The contact was not gripping like the steep fit and could actually rock very well similar to a see-saw, allowing good tear flow.  On one blink, fresh oxygenated tears could get behind the lens.  While on the next blink, old tears would carry out cellular debris such as carbon dioxide, lactic acid and dead skin.  I tried one of his fits and it was so comfortable that I did not really even notice I had contacts in my eyes.  Also, I had 20/25 vision with his trial fit, which I had not had since about ten years old!

Wearing the flat-fit lenses reshaped my eyes by making them become more spherical and evenly shaped.  I learned that a KC patient cannot be fit in one visit.  Similar to braces, the lenses need to be gradually flattened.  For about six months, I saw my doctor about once or twice per week.  He was amazed at how readily my eyes were readjusting and flattening.  He kept ordering me flatter and flatter lenses.  He told me that I had the most dramatic recovery he had ever seen in any of his patients.  Finally, after several months, I stabilized.

 Holistic Approach to Eye Care

The doctor told me that he had worked with about 400 KC patients, and they shared similar personality characteristics.  They usually were very driven, analytical, type-A personalities.  He said that similar to how his back always took the brunt of his stress, a KC patient will feel it in the eyes when they are stressed.  This was a new concept for me that the whole body was inter-related.  I was too used to the Western view of healthcare that focused on the sick part of the body and treated it by itself.  The doctor told me to do yoga because it would relax my neck and shoulders.  This meant it would also relax my eye muscles.  He also told me to exercise and watch my nutrition.  One of his other KC patients had some regression of the condition after he gave up coffee.  I was very used to a doctor fixing everything while I was passive and did nothing.  The fact that I could control my condition somewhat was a foreign idea to me.  He then told me that if I did even half of what he told me to do, I would get better.

I set up a flat fee package with the doctor.  He did not take insurance, and I paid thousands of dollars.  (With all the lenses and visits he went through, he tells me that he barely broke even- I believe it.)  I was so happy in my new lenses.  I remember walking around the school campus that first week and watching the leaves swaying in the wind on the trees.  I could see each leaf so clearly; I hadn’t even realized all the details I had been missing before. 

Controlling the Condition

My doctor explained to me that I didn’t really have a disease, but a condition instead.  He said that what was going on internally inside of me could affect my eyes.  Therefore, my mission was to control my stress so that my eyes would be stable.  It’s been several years, and I have found this to be true.  If I am feeling severely stressed, my contacts will start killing me.  The worst problems I ever had with my contacts occurred when I was taking the CPA exam.  People have argued with me that it was probably due to all the studying I did.  However, I worked 75-hour workweeks in public accounting without the slightest lenses discomfort.  It always happens when something is bothering me.      

I know my doctor liked working with me because I was a challenge.  He went on to write a journal article with three cases, me being one of them.  I was disheartened to see that it was not very well received.  Everyone seemed to want to cling to the original fitting methodology.  Any time I try to explain the progress I had made, they would just say I would scratch my corneas eventually (which I have yet to see happen).  To make matters worse, they inadvertently swapped my “before” and “after” pictures in the article.  (See the correction in the Letter to the Editor.)

A Second Wake-up Call

I’m embarrassed that I forgot about the incident and became busy in life for the next five years.  I thought that would be the end of my story.  Then, at age 25, I received a second wake-up call and became severely ill.  How I became ill is irrelevant to my story about my vision, but I completely lost my ability to digest food.  I was feeling hungry, but every time I ate I would have the most horrible stomach cramps.  The cramps would persist from the moment I woke up until I went to sleep.  (Probably when I was asleep too, but at least when I was sleeping, I wasn't thinking about the pain I was in.)  It was even worse than KC because at least with my eyes I could pop my lenses out for relief.

I went to my doctor, but I found no help.  They ran their tests and kept telling me everything was “normal.”  They would prescribe me some medication that might temporarily fix a symptom, but never really restore my body to health.  I could see early on that I was not going to get any help from the doctor.  I went on in pain for several months.  Once again, it was getting hard to get up and live life.  One night, I had a lot of trouble sleeping due to bad stomach cramps.  Even though I suspected it would be no help, I went back to the doctor in desperation.  She admitted that she felt sorry for me, but that all she could do was fix symptoms with medicine.  I then started to cry a little, and I was then appalled to see that she had written me out a prescription for Prozac.  I went home and threw out all the prescriptions she had written for me in the garbage.

I decided I was too young to be this sickly, and if there was anything I could do about it, I was never going to become seriously ill again.  I searched for answers and out of desperation tried eating a diet of fruits, vegetables, nuts and seeds.  I ate these foods raw because I had read the living enzymes in the food would help my body digest it.  I also chose this diet because these were the easiest foods for the body to digest.  Within three days, the cramps that had plagued me for months were completely gone.  After a month, my digestion was better than it had been in my life.  I felt so much better than I ever had that I couldn’t go back to eating the way I had before. 

Further Regression of KC from Dietary Changes

For this reason, I permanently became a vegetarian.  There’s a lot of variation among vegetarians as to what they eat.  You can still be an unhealthy vegetarian if most your diet consists or pancakes, grilled cheese and pizza.  I eat a plant based diet, with a significant amount of raw produce and leafy greens.  I eat very little processed foods, and almost all my food is whole foods.  (I have devoted a section of this web site to my diet to provide more detail.)

It never occurred to me that switching my diet would have repercussions to my eye disease.  However, about eight months after I drastically changed my diets, my contacts started killing me again.  My doctor confirmed what I already knew- My eyes had started flattening again so that now my flat fit had actually become a steep fit.  He asked me what I had changed in my lifestyle and told me whatever it was, not to stop doing it.

At age 26, I repeated what had already occurred seven years earlier.  Every week I would see my doctor and often needed to order new lenses because my eyes had flattened.  My doctor became very nervous, saying he had never fit such an advanced case so flat before.  In December of 2003, my eyes seemed to have stabilized, and my doctor wanted to take a corneal topography (elevation map) to see what had happened.

Before and After Corneal Topographies

I was shocked by the pictures- I could not even tell it was the same eye as six years ago.  My case had regressed much more dramatically than when the journal article had been written.  (As I write this, my doctor is still trying to find someone to publish a second journal article.)  I was very excited that I had so much improvement in my bad eye that the program did not even diagnose me as having keratoconus. 

We showed my before and after photos to a couple of the ophthalmologists in the office.  They were so skeptical and began rapidly questioning me.  I could tell that they could not believe it- maybe I wouldn’t have either.  I lived it, so I knew it to be true. 

KC and Pregnancy

When I was 29, I had my first (and so far, only) child.  My doctor was really worried that the pregnancy would cause my corneas to become unstable, especially in my last trimester when swelling can occur.  He examined me at the beginning of my last trimester and was surprised at how well I was doing.  I had no problems and comfortably wore my lenses throughout my pregnancy without interruption.  He spent extra time in my next annual visit after I delivered my baby to see if the pregnancy had changed my corneas but could find no repercussions.   

Current Update

As of the present date (May 2007), it has now been eleven years since I began wearing a flat fit.  When I first started a flat fit, I was very enthusiastic about my results and posted my good news to a KC discussion list.  The doctors wrote in saying I would scar my cornea and that this treatment was “contraindicated.”  I have yet to see any scarring on my eye, much less any discomfort with flat fit lenses.  I am nowhere near needing a transplant and live my life like any other normal vision person.

I am in the middle of another contact lens refit (similar to what I did in 2002) because my eyes have flattened more.  I recently had an orb scan, which showed that my left eye, which was originally severe KC has regressed to a moderate stage.

You may be wondering as I often do why everyone isn’t practicing flat fits.  I have watched my doctor try very hard to publish papers, but flat fits are so opposite of how doctors are trained that it is simply too difficult for most to believe.  It takes many years for a shift from traditional thinking.  I’m not sure if I will see KC patients treated any differently in my lifetime.  Until then, I will continue to try and help patients individually as best as I can.  If I can save a few patients from transplants, surgeries, and medications, this site will have been worth it.

 Email me at KrissyGolub@cox.net