I have drafted this document in the hopes that it will give some insight into my visual conditions and abilities. I don't expect anybody to understand exactly what I see and in the same way, I can't understand what others see. But this should help to show some of the impacts of limited vision in general. First, a little bit about my conditions.
Most of my visual conditions are genetic, meaning due to heredity. I have had those all of my life, but their impact has grown with age. There is a very good chance that I could pass them on to offspring. The conditions affect both eyes, though the conditions in my right eye are much more severe.
I am listing the basic conditions which I have experienced. Each
condition has a link to a more detailed description, which I will
not repeat here to save text. However, I will cover some personal
notes in the next few paragraphs.
Although the discussion below relates to both of my eyes, the left eye is the one which I rely on for vision. The right eye can pick out objects, but the vision is so bad that most of the images I use come from the left eye.
The Aniridia has an interesting effect that I had not considered until very recently. Since there is no iris, my visual field is apparently much larger than it would normally be. The iris and pupil combination would narrow the area of incoming light. If they are missing, there is no obstruction. My visual field is narrower up and down as my eyelids obstruct that part of the view. By my own testing, I can see 180 degrees (horizontally) without turning my head. I've always thought that everybody had similar visual fields.
The Cataract in my left eye has always been visible when I use any type of magnification. When I use binoculars, the spot becomes big enough to be annoying in the picture. With the Nystagmus also present, that spot appears to rapidly move around while the eye is attempting focus. Now that the cataract has grown, it is becoming more difficult to use binoculars because of the effect.
My problem with Floaters began in late 2003. For the first month or so, I reacted to the images coming into view by jerking my head away or stopping if I was in motion. The frequency of occurrence has diminished now, but I am also more accustomed to them when they do show up. Again, the Nystagmus sometimes adds to this by trying to focus on the floater rather than what I want to look at. Stuff moves around and I have to pause whatever I am doing until it goes back to normal, usually in a few minutes.
The Infections that I get are caused by the fact that my eyelids stay mostly closed. The tear fluid isn't as effective at cleaning the surface of the eye when the eyelids stay mostly closed. If any bacteria stays behind the eyelid and grew, the infection would be present. Since about age 30, I used to get these every one or two years.
Although Keratitus involves inflammation of the cornea, my cornea is apparently beyond that. As a normal part of life, our cells are constantly being replaced with new cells. When a cell dies, it usually goes away. If a cell does not go away, it becomes scar tissue. It is said that many years of this activity has caused several layers of built up dead tissue to be present on my cornea. This of course inhibits the normal flow of good quality images. It makes sense to me and also explains why the deterioration of vision was gradual throughout my life, but is more noticeable now as it progresses.
My vision has been less than 20/200 (legally blind) all of my life in the better (left) eye and 20/400 in the right eye. In 2001, I I tested as 20/450 (left) and 20/600 (right). In June 2004, I tested as 6/300 (left) and 6/500 (right). The reason the first number is 6 instead of 20 is because I could not read any of the letters on a chart at 20 feet. A chart had to be 6 feet from me before I could read anything from it.
Over the past two years, there are so many things that I can no longer see that I used to before. It is now almost impossible to read print even with a 10X magnifier. Some people don't understand that it is that bad because I rely heavily on former knowledge to get me through. I am constantly coming across instances of realizing the lack of ability to make out something that I used to be able to.
Early in 2004, I was told there was a procedure which might be able to compensate for my Aniridia condition. That has lead to a still ongoing process. The surgeries themselves are described in other parts of this website, but let me take just a few paragraphs to outline the steps as they happened for me.
My ophthalmologist investigated the procedure. He found out that there were devices being implanted into eyes to mimic the actions of the iris and pupil. He found a doctor and facility that was doing the procedures. In my case, the investigation process took about a month.
My ophthalmologist also wrote out a referral for me. Many specialists require referrals from a patients regular doctor.
Once I had a referral, my records had to be sent to the specialist for their consideration. I don't know what percentage of patients get refused, but my acceptance took only a few days once all of the paperwork was completed. Since the specialist was out of state, the process was probably harder. In my case, the time from referral to approval was about three weeks.
The iris ring implant was not FDA approved for use in the United States in early 2004. As of this writing, it still is not. If the FDA was conducting clinical trials for the device, I could have applied to be a part of those trials. Those trials had already been underway. However, a patient can often still apply for a compassionate use waiver. Little did I know at the time, the waiver would take about three months to get approved.
Once my case was FDA approved, we setup an appointment. Since the facility was in another state, my appointment would be the first time this specialist would meet me. My appointment was set for a date about six weeks later.
The process that the specialist uses was to do consultations and exams on Mondays, then surgery on Tuesday if everything was acceptable. It was just over six months from the time I first heard about the possibility of a procedure to the day of my exam. All of that wait and my surgery was canceled because my cornea was so damaged that the surgeon felt that should be dealt with first. It is harder to do work on the inside of the eye when the cornea has the above noted scar tissue.
The new plan now is to get my cornea fixed and then come back to the iris ring implant surgery later.
Though the surgery was canceled, the surgeon did immediately arrange for me to meet with a corneal specialist. The following day I had that consultation and exam. It was decided that I would undergo the Kerato-Limbal Allograft (KLAL) procedure, which is a corneal cell transplant process. However, the earliest that I could get that started might be a few months. The procedure is done and followed up with frequent examinations. Each one would require me to travel out of state to their facility. It was an easy decision to accept as I wanted restored vision. The office was going to call me to set something up.
I am a very patient patient (sorry about that). But having heard nothing about even scheduling an appointment for over three weeks led me to consult another corneal specialist. I found one in my area who would do the KLAL procedure. I went back to my original ophthalmologist and got a referral to this new doctor.
The out of state corneal specialist seemed to be very knowledgeable about fixing corneal problems such as mine. He was friendly and informative also. That all counts for something to me, but the fact of little office to patient communications and seemingly no drive to even schedule further appointments does not set well with me. After waiting over six months for the first process, I wasn't going to wait long just to start the second one.
My appointment with the new corneal surgeon happened one month after the date of my canceled implant surgery was to occur. The new doctor and his office have worked both with me and for me. They scheduled further testing exams and other work which would be needed prior to the KLAL surgery.
After going through these other examinations, we got to the point of being able to schedule the KLAL surgery. This date was set and would have occured less than two months after I initially found this local corneal surgeon. Total elapsed time from the start of initially hearing about something that could benefit me was almost exactly nine months.
Unfortunately, there was no donor corneal tissue available at the time the surgery was going to happen. As of this writing, I am waiting for a matching corneal tissue to arrive at a tissue bank so that the surgery may be performed.
Once the KLAL surgery occurs, there will be a recovery period. The new corneal tissue must be accepted by my body and must promote regrowth of good tissue to get rid of the scar tissue on the cornea. It is expected to take one or two years of gradual regrowth for the entire cornea to become healed and proper. This of course depends on the response of the patients body.
Even before the cornea is completely regrown, it would be possible to go back out of state to have the iris ring implant surgery performed. When the cornea clears enough for a surgeon to do reliable work inside of the eye, we could setup another appointment for the exam and surgery process. It is expected this could be as early as three to six months after the KLAL surgery is done.
Once the iris ring implant surgery is completed, there will be a period of recovery time. The cornea would still have to finish its work and then the eye would recover from the implant surgery also.
It is expected that if all goes well physically with both surgeries and recovery, that another challenge must be met. Improved vision (even a return to former vision since lost) is something that has to be dealt with. The brain will have new images, likely better quality images, to deal with and must match the memory images with the new vision images.
Many surgeons advise that dealing with problems like mine which are present in both eyes should be dealt with individually. One eye (the worst vision) is taken through the process alone. This protects the patient because any surgery has risks. If anything goes wrong, the patient has less to lose as they still have the vision in the other (better) eye. Once the vision is corrected in the worst eye, the process can be repeated for the other.
In my case, the vision is bad in even the better eye. I was able to steer the process toward fixing the better eye first so that vision might be restored quicker. When there isn't much at stake, the choice becomes much easier to make.
Before I leave this section, I would like to share two lists. It is my way of letting people with good vision know they shouldn't take that vision for granted.
Some things that I would really like to see clearly again are:
Some things that I would really like to see that I haven't been able to yet are:
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