My Story

Closing the Hole in My Macula

In the Beginning Research Getting Ready The Operation Face Down Returning to Normal Cataract

In the Beginning

I didn't know that I had a macula until I was diagnosed with a macular hole in my right eye. I had indeed observed a few peculiarities in my vision but I didn't pay them much attention. Occasionally I would notice that at certain angles the license plates of the vehicles ahead of me took on a peculiar shape, but then I figured that this was due to an imperfection in the glass of my windshield. And the halo around the letters which appeared while reading in bed at night I ascribed to the quality of the paper. When something is wrong, I naturally assume that the fault is not with me. It was only when I went for an eye test before getting a new pair of glasses, that I discovered that the problem was with me. I was shocked to find that with my left eye covered, my right eye couldn't identify any of the letters on the chart. It took the ophthalmologist only a few minutes to diagnose the problem.

I was completely unprepared for this revelation and hardly listened as he described the operation which would close the hole. The main point that I caught was that I would have to keep my head down for three weeks after the operation. Being a pretty active guy, I couldn't conceive of maintaining this position for 21 days, 24 hours a day! I have always been a healthy specimen and have never been hospitalized. This history made it all the more difficult for me to accept the idea of an operation.

Research

At home, after recovering from the shock, I began searching the web to learn what I could about the operation, the potential for improvement in my vision and what the operation involved. Later I consulted several more doctors before I finally accepted the inevitable. I found an Amsler Grid on the internet and checked my vision by that: Looking only with my right eye, the parallel lines met at the point of focus instead of remaining parallel. Any text I tried to read with my right eye decreased in size to zero at the point of focus, so I was unable to read with that eye. The letters surrounding the point of focus disappeared too, as my eye turned to focus on them.

A major fear was that a hole would develop in the macula of my left eye as well, leaving me virtually blind. On the other hand, I was concerned that something would go wrong in the operation and that I would fall into the group of negative side effects. So would I be better off doing nothing? My wife Ruth, who has far greater faith in the medical profession than I, favored doing the operation.

The ophthalmologist who would do the operation had a very good reputation. But he was the strong silent type; he offered only what he thought was necessary to convey and since everything was clear to him, he didn't feel the need to tell me much. Knowing that I came to him after doing my own research made it even less necessary to provide me with information. But it was possible that I had missed something or misunderstood so I wanted him to tell me everything from the beginning. Any questions that I asked received a very short reply. Yes, there is a 10% chance of a macular hole in the other eye. No, we don't know what causes a macular hole. No, there is nothing you can do to prevent it. After the operation there is a 10% chance that the hole will reopen. The main purpose of the operation is to prevent further deterioration. The likelihood of getting back full vision in the bad eye is very small. None of this was very encouraging. But then, very little of this was new to me either. I had hoped that the doctor's own experience would provide some new insights and perhaps greater hope, but I don't recall hearing anything encouraging. I guess the thing that convinced me was his pointing to the big letter E at the top of his chart: "If you do nothing, your vision will get worse and this is all you'll see after awhile!"

The success (whatever that is) of the operation is greatest if the operation is done within six months of the appearance of the hole, but it's impossible to know when that was. Fortunately, I did recall the approximate date when I had first noticed the distortions and if that coincided with the actual creation of the hole, then less than six months had passed. Having decided to go through with it, I wanted it to be done as soon as possible in the hope that the operation would fall within my six months margin. Since a doctor with a good reputation is in popular demand, he normally has a heavy schedule. He gave me a date about a month and a half away, pushing the operation to the very edge of my six months. He advised me to clear my post operation schedule: I wouldn't be able to take any flights until all the gas had dissipated and he couldn't predict how long that would take. He estimated about three months, but said that in any case I should consult him before flying as there might be some residual gas that I wouldn't notice.

As I said, I had never before heard of a macula. Nor could I recall ever having heard of anyone having such an operation. But at some point I did recall that Jack Feuer, an old friend from Portland, Oregon whose acquaintance I had renewed at a reunion a few months earlier, had mentioned suffering from a peculiar eye problem. I contacted him by email and yes, it was a macular hole that he had. He had had the operation, he had managed to keep his head down for three weeks, he felt that his sight had improved and he was full of suggestions. He was very helpful and encouraging. As my story circulated, Susan Kalma mentioned that her Aunt Maggie Carson in Vermont had had the same operation. Aunt Maggie was pleased with the results and she too wrote with all kinds of advice. I have decided to combine our joint experience and offer it to others who may have to undergo this procedure.

I won't pretend to describe the operation; many web sites provide excellent information on this. Search for "macular hole" or "vitrectomy". What is important to mention is that gas is placed inside the eye and presses it against the wall of the eye, sealing the macular hole. To succeed, the gas must apply continued upward pressure against the retinal surface in the area of the macula. Because the macula is located towards the back of the eye, you must remain in a "face-down" position, allowing the gas to rise toward the back of the eye and exert the necessary pressure. My doctor, as well as all the sources I consulted, all maintained that observing the head down position is critical to the success of the procedure. They do not necessarily require a prone position, nor do they demand immobility. Walking is permitted, but obviously you are not going to go far with your face down; walking around the house is okay as long as the rule is observed. And of course you can read with your good eye.

Getting Ready

Good preparation is the key to being able to keep your head down for an extended period. You need a few fixtures to help you sit more or less comfortably, to lie face down, to sleep face down and to watch TV or use your computer.

Jack Feuer designed a very simple mirror device which I copied. It allowed me to watch TV and to maintain eye contact with people while talking to them. It is very awkward to speak to family and visitors while staring at the floor. I also used the mirrors to see my computer screen, but it was less useful for this purpose, as the text was reduced too much. This might be resolved by using a magnifying mirror, but I didn't think of this in advance and once I was face down, I was not in a position to start making things. A diagram of the mirror device, which I have dubbed Vitrectomirror™ appears in the Mirror Device tab. Since every one who saw it assumed that the Vitrectomirror™ reversed the view, I will point out that the view obtained is a correct one. The first mirror reverses the picture and the second mirror reverses this again, so you end up with a correct view. This property permits you to use the Vitrectomirror™ with your computer or with anything else that requires a correct view.

Another item that is simple to make, is a board with a face shaped hole near the end. This I dubbed the Bed Board. I placed the Bed Board under the mattress on my bed with the hole protruding. On top of that I placed the Face & Shoulder Support mentioned below. This allowed the passage of air for breathing and permitted me to read books that I placed on the floor. I placed a lamp on the floor nearby to provide the necessary light. The Bed Board provides a place to rest your arms while your head is over the edge of the bed.

To make the Bed Board take a piece of plywood about 1/4 inch and cut a face sized hole in it. The hole should be lined with foam rubber and Velcro. Alternatively, you can use the Head and Shoulder Support on top of it. Slide the plywood under the mattress leaving the section with the hole sticking out beyond the edge of the bed. Your weight on the mattress holds the Bed Board in place.

Chairs are available for sitting with your face down with a lower shelf for resting a book. If you live in the US, you might contact Oakworks (www.oakworks.net). They make a Face Down Chair as well as a Face and Shoulder Support Fixture that can be used in bed or at the table. Similar devices can be rented from local rental agencies that handle massage equipment. The support is made of a soft pillow-like material. The Face Down Chair and the Face and Shoulder Support Fixture both come with a head support consisting of three separate pieces held in place by Velcro. This permits spacing them according to individual needs. Since I wear glasses, I had to space them far enough apart to provide room for the glasses. That's Jack in the picture sitting in the Face Down Chair. He seems to be reading something, but couldn't recall what he was looking at when the picture was taken.

Jack rented a body massage device (a contoured foam rubber form that fits the body contours) to sleep on in his waterbed and found that it helped. This device elevates the body and makes it easier to keep the face down while supporting it on a U shaped face cushion. Jack mentioned finding such devices at places that rent massage equipment. The head down position with shoulder rests are basically massage items anyway.

A simple and inexpensive item that is essential is the drinking straw. I bought a large box. Drinking from a cup or glass is impossible otherwise. I found this a very uncool way to drink coffee, but it was far better than doing without. I had to wait till the coffee cooled down because I was afraid that the straws might melt, but better cool coffee than no coffee. I also made sure that I had a big supply of books to keep me entertained.

Aunt Maggie offered other practical advice which helped to ease the face down period. She bought soft pajamas without buttons. It would be uncomfortable to lie on buttons for an extended period. She also prepared a low table in the bathroom where she kept a mirror, a comb, toothbrush and similar items of daily use. On the floor beside her bed she kept a basket with things that she might need, like tissues. I added salt peanuts and chocolates because those are the things that I need, and a supply of mineral water. I kept a batch of straws there too, of course.

You should get all this equipment a few days before the operation, set it all up beforehand, and test everything to make sure that it is satisfactory. You don't want to find yourself without everything necessary to make you comfortable, because that might make it difficult for you to keep your head down.

Another thing: If you have a good growth of hair on your head, get a haircut before the operation.

The Operation

Murphy's law is inescapable and even if we work it into our plans something will still go wrong. An emergency situation requiring my ophthalmologist's expertise, forced the postponement of my operation at the last minute; my case was less urgent and I had to wait another two weeks. After preparing myself psychologically for the moment I was at first angry, then disappointed but finally accepted it.

The ophthalmologist informed me that the operation would take about an hour and a half. I could have a general anesthetic or a local. Considering the length of time, I preferred a general anesthetic and the anesthetist okayed that. I didn't care to know exactly what they were doing to me, nor did I care to hear the conversations around the operating table. But just before the operation, the doctor asked me to reconsider, since the general anesthetic would require the insertion of something into my throat and I might suffer a sensitive throat and difficulties in swallowing for several days following the operation. Why cause yourself more discomfort than necessary? So at the last moment I agreed to go for the local.

My good eye was covered and I couldn't see anything that was going on during the operation. The anesthetic turned out to be not exactly local; the injection that I felt was in my hand and was relatively painless. I guess that afterwards they gave me the local shot. The anesthetist told me to call out if I started to feel any pain. I was sufficiently drowsy and happily unaware of what they were doing to me and indifferent to any conversations. In fact, I definitely fell asleep during the procedure. At some point I awoke with a jolt and wondered where I was. I inadvertently moved and was severely reprimanded by the doctor as I might have caused myself a lot of damage. I wasn't about to argue with him and justify myself. I was just glad that no damage had been done. From that point on, I heard them putting me back together and from the instructions I heard the ophthalmologist giving, imagined all kinds of weird things. But I heard no private conversations: it all sounded very professional.

Towards the end, I began to realize that I felt pain in the eye. The feeling came on gradually and at one point I called out "Hey, that hurts!" but someone just said rather nonchalantly "We're almost finished anyway." I guess that they were closing up already and in a hurry to move on. The pain lasted for about 36 hours on and off. Painkillers kept it from getting too strong. After that, I felt no more pain throughout my convalescence.

They kept me in the hospital for another 24 hours after the operation and then allowed me to go home, but I had to return each morning for follow up. After three days like that, I was officially released from the hospital, returning for periodic check ups every couple of weeks. I wore a patch on my eye only on the first day; after that they removed it and I never put it on again. Aunt Maggie says that she wore one at night and I suppose that it's a good idea. But I know that it would have bothered me.

Face Down

For two and a half weeks I had to keep my head down, that is, parallel to the floor. I was not confined to bed as I had a number of options for resting my head. Some of the time I sat in the Face Down Chair and read. I also used it in combination with my Vitrectomirror™ to operate the computer although this was cumbersome and not too successful because the image that I got in the mirror was too small to view comfortably with my one good eye. Increasing font size complicated things by requiring a lot of scrolling. I also used the Face and Shoulder Support Fixture on the coffee table together with the Vitrectomirror™ to watch TV. No matter what I did, though, I suffered strain on my back and shoulders because of the awkward position.

I had to make small accommodations in this period. Instead of taking a wet shave as I prefer, I used an electric shaver and accepted that the shave would be less smooth than I like. Face down was awkward for wet shaving but okay with the electric razor. I decided to forgo a tie; it would just get in the way hanging there and look pretty ridiculous.

For all my preparations, I found the most comfortable position was the simplest: stretched across the bed with a book on the floor or with my laptop there. The Bed Board was very useful for resting my arms while reading. When using the lap top computer I placed it directly on the floor without the Bed Board, as I had to leave free access for my hands.

My biggest problem was sleeping in a face down position. I used the Face and Shoulder Support Fixture in different ways. I slept with my face in it while it was positioned over the Bed Board. Alternatively, I placed the Face and Shoulder Support Fixture directly on the mattress, where my pillow would normally be. I also tried spending the night in the Face Down Chair. The fact is that no method was very satisfactory and sleeping was my biggest problem, since I normally sleep on my back. I tried various solutions, such as placing bolsters on both sides and sewing a tennis ball to the back of my pajamas to force me to turn back on to my stomach. But the tennis ball only gave me a backache and I tended to push the bolsters aside. Ruth would wake up several times during the night to switch me on to my stomach and that was probably the most effective method. But I really didn't manage to get a good night's sleep throughout my face down period.

When walking around the house with head parallel to the floor, or even when simply seated in a chair, it's difficult to know if the angle is right. But if you are not alone, family and friends usually point it out and you can correct it.

I had to have drops in my eye every four hours. This was Ruth's job as I was in no position to locate the point on my eye to take the drops. After a few days, my good eye developed an infection (it is rare to come out of a hospital without contracting some kind of infection) and so I had to have drops in both eyes. My infection cleared up and the eye drops stopped about a month after the operation.

I had to report to the hospital for examinations about every two weeks until I was pronounced okay. Ruth drove while I sat in the back of the car with my head in the prescribed position. I managed to get around the hospital without bumping into too many people, probably because others preferred to keep clear of a guy who walks with his eyes to the ground. At the examination in which the doctor decided that it was no longer necessary to keep my head down, I was elated. It's amazing how small things can make one so happy. The first thing I did was to get myself a haircut. For all my preparations, I had neglected to have my hair cut before the operation. I had a much thicker growth than I was accustomed to and found it pretty uncomfortable.

One day about four weeks after the operation, I felt a sudden pain, like being hit on the head with a hammer. The pain gradually concentrated itself at the back of my eye. This gave me a real fright. I was sure the gas had exploded and that something terrible had happened to my eye. I got myself over to the doctor as soon as I could, or rather Ruth drove me there. He inspected the eye and told me that a stitch had burst open. I wasn't even aware that I had stitches, never having given any thought to how the doctors closed things up. Apparently the stitches dissolve by themselves, but occasionally they tear, as mine did. He removed the offending pieces and told me that the eye was in order and had suffered no damage.

Returning to Normal

The eyesight returned very gradually. At first I saw nothing but a fog with my right eye. Later I could identify my hand when held directly in front of the eye. I also saw a variety of moving spots before my eye in a variety of colors. Mostly they looked like flies moving on a windowpane. Five weeks after the operation I could identify objects directly in front of me, but had a constant dark bubble in the lower part of my eye. If I looked down, I couldn't identify anything but could recognize colors. Even the objects in front of me were very unclear. I always felt as though I was viewing things on the other side of an aquarium. I could identify text, but couldn't read anything. Two months after the operation, I still had a dark bubble in the lower part of my eye, but it had become much smaller. I frequently tried to determine whether whatever I was looking at was distorted as before the operation or not, but came to no conclusion. The longer I concentrated on an object, the less clear and the more distorted it became. On the other hand, at every visit to the doctor, my eyes were checked and this objective examination showed considerable improvement over pre-operation results.

During all this time, keeping both eyes open was confusing. Since the image my brain received was a combination of what both eyes saw, the bad picture from my right eye overlay the good one from my left and the combined picture was either foggy or dominated by the dark bubble at the bottom of my operated eye. I therefore often closed the offending eye. While this may have appeared strange to people who didn't know the reason, no one commented on it, I suppose because we tend to be polite and don't draw attention to people's peculiarities. Closing one eye, however, had a disorienting effect and confused me about where things really were. I often missed when trying to replace the cover on the toothpaste tube.

During my convalescence, the importance of eye contact became very apparent to me. I hadn't realized how critical a role eyes play in conversation. Staring at the floor while conversing with friends was disconcerting to both sides. Occasionally raising my head to emphasize a point made friends feel guilty for obliging me to shift from my prescribed position. One friend, Susan Kalma, actually lay down on the floor to look up at me as we spoke. This wasn't particularly successful as we were then upside down to each other. The Vitrectomirror™ resolved the problem. We were able to carry on a satisfying conversation while looking at each other in the mirror.

I returned to driving as soon as the doctor okayed it, with no difficulty. Yes it's okay because even with one eye you are allowed to drive, and this is probably true in most countries. But I was extra careful because I found that the blind spot on my right covered a larger space than before my operation. This may be temporary as the full recovery period may take many months. Being extra careful never hurt anyway.

The black spot at the bottom of my eye got smaller gradually. It disappeared completely 10 weeks after the operation. By that time I was so used to it, that I missed it when it was gone. But it didn't take long to get used to clear vision. Shortly after it disappeared the doctor examined me and gave me a clear bill of health and permission to fly.

The distortion that I originally noticed has disappeared. Two parallel lines no longer meet at the point of focus. Instead, when looking only with my right eye, I have two spots at the point of focus covering the letters or whatever it is I am looking at. If the letters are large enough, I can read the text and the spots are merely a minor irritation. Smaller text I am still unable to read with my right eye. But with both eyes open, my vision appears to be normal.

Cataract

After a couple of months, the sight in my right eye (what little there was of it) began to cloud over noticeably. This didn't trouble me too much, although I developed kind of a nervous habit of cleaning my glasses frequently.

In the meantime, I had to renew my driving license and an eye test was required. The optometrist declared that the vision in my right eye was nil according to the driving test criteria. He suggested replacing my glasses, but a test showed that under the circumstances, even with a different lens, my right eye would still not satisfy the vision requirements for driving. I was a bit concerned, but apparently the authorities didn't feel that this was too much of a problem. They reissued my license without any further questions.

At my six month check up, the doctor told me that a cataract had developed. This came as no surprise, since he told me at our very first meeting that cataracts were pretty much inevitable side effects of this procedure. He felt that it was reaching the stage at which it could be removed. He scheduled the operation for April 2002 and ordered a few pre operation tests assuring me that it is a very simple procedure and that I would be home the same day.

On April 25 my cataract removal operation finally came up. This date came exactly one month after the originally scheduled date, and was naturally cancelled by the hospital at the last minute. Just one of those things.

The procedure turned out to be more serious than I had expected, judging seriousness by the amount of clothes I had to remove. I was ordered to strip down to my birthday suit and to put on one of those ridiculous hospital gowns that leave the backside exposed. I was operated on in the same operating room where the macular hole procedure was done, with those powerful spots blinding me. I’m not sure what exactly I was expecting, but probably something more like having a tooth extracted.

The reason I was so unprepared was the absence of any preliminary research on my part. The operation was going to be done by the same ophthalmologist who took care of my macular hole. Since he had done a good job, I had no doubts and didn’t bother to read up. He is, as mentioned before, very parsimonious with information and very tight lipped. On top of that, every other person I know has had a cataract procedure and all assured me that it was small stuff. No one spoke of the indignity of a hospital gown, perhaps savoring the schadenfreude at my expense. Or maybe by the time they told me about it, they had forgotten all the details.

The staff strapped me onto the operating table and fussed around me for about 15 minutes. Then they put a mask over my face and fed oxygen inside it. They washed my right eye and poured drops into it that made it sting. When this was all done, the ophthalmologist appeared and told me that he was about to start. This caused me extreme concern, since I hadn’t yet received any anesthetic. I was afraid that he assumed that I had already received an injection and was going to start cutting, or whatever was involved. I told him that I didn’t think that he should start until I had gotten at least a local anesthetic. He assured me that there was no cause for concern, advising me that when he said he was about to start, he meant that he was about to give me a shot. Then he did indeed give me a shot. It was more painful than I had expected although admittedly not unbearable.

My left eye, the good one, was covered. With the right eye I could only see light and couldn’t identify any objects. Most of the time I saw very bright white light, but I also saw green and red light and I think blue as well. I don’t know whether there was really anything of those colors up there or whether it was one of the tricks that my eyes play on me. Or maybe that was the color of the laser beam that I think they were using on me. The doctor said very little to the four or five others attending in the operating room and of course he told me nothing. Altogether there was very little talk. Certainly the doctor didn’t see me as a partner to any discussion in the course of the operation. He directed words to me only when he wanted me to “look” in a certain direction. I guess this gave him access to the part of the eye that he was dealing with. I was afraid that I might drift into sleep as I had in the course of the macular hole procedure, so I pushed myself to stay alert.

When it was all over, I was wheeled back into the recuperation room. They called Ruth in, brought me my clothes and told me that I was now a free man and could go home. They gave me two pills to reduce pressure in my eye and any pain that might develop – to be taken during the day. They also gave me a prescription for Dexamycine eye drops to be taken 4 times a day. Then they snipped the plastic bracelet off my wrist and sent me on my way. I had arrived at the hospital at 6:45 AM and I was out by 9:00 AM. The procedure itself took under 30 minutes. Ruth tells me that when it was all over, I was even grumpier than usual, but I find that hard to believe.

The big bandage on my eye prevented me from putting on my glasses. I had to support them with my finger and the lens was too far from my eye, hindering eye focus. Nevertheless, I could read while seated. But I couldn’t drive.

The next morning I reported to the hospital for my post-op check up. After some aggravation due to the fact that the hospital had misplaced my file, I got to see the doctor. He removed the bandage and the eye shield, gazed into my eyes with his instruments and expressed pleasure with his handiwork. He told me to continue with the eye drops, to wear the eye shield in bed and to return in two weeks for another check up.

At the second check up, the optometrist checked my eyes. My eye sight had changed substantially as a result of both operations. I needed a new lens for my right eye, but he told me to hold off with the change, as he expected more improvement. It would be wasteful to pay for a new lens that would soon need replacing. While it is an inconvenience to look through an unsuitable lens (the lens always appears to need cleaning, but cleaning it doesn’t help), the fact is that I do very little reading with the right eye anyway. Two spots remain from the damage done by the creation of the macular hole. The examination showed that all was well with my eye, and as usual, the doctor was pleased with himself.

The biggest difference I have noticed is the whiteness of the picture that I see. It is so much whiter, that in the bright sunlight I often have to close my right eye – even while wearing sunglasses - as my eye is unaccustomed to so much light. My eye is gradually becoming accustomed to the increased light and I hope that I will soon be able to keep both eyes open.

A second difference is my perception of color. I noticed one day, that with my left eye closed, the hue of my brown pants was far redder than I knew them to be. Looking only with my left eye I saw the color that I knew, or believed it to be. I realized then that my perception may have been wrong, looking at the world through eyes that were pushing 70. I began to inspect other colors and found them all to be richer with my renovated right eye than with my left eye. I’m not sure which color is the correct one, but I suspect that the right one is. In the process of discovery, I have lost the absolute confidence in my good taste that I used to have, and am no longer sure that my clothes are as tasteful as I used to think.

Conclusion
On August 13, 2002 the ophthalmologist checked my eyes, declared himself supremely pleased with both the lens replacement and with the macular hole procedure and told me that he didn’t want to see me anymore. I wasn’t in need of any more follow-up. He said that he found no trace of any macular hole and that my eye had completely healed.

I had new glasses made and I no longer see the annoying haze in front of my right eye. I still cannot easily read ordinary print, because of the two spots in my right eye, but have little trouble with larger type. I can read all headlines in the newspaper and with a bit of maneuvering – I have to move my head a bit to catch some parts of a word – I can read the subtitles. The font size of the stories themselves is too small for my right eye. But with my left eye, I manage very well, thank you.

I can conclude, with considerable satisfaction, that my macular hole experience ended successfully.