Yes, But Doctor...???

By Tom Brennan

When I began writing this material, I had intended that it be a simple story about dropping a prosthetic eye. However, it soon became apparent to me that there were several interlinked stories to be told and breaking them up would not do them justice. I have also come to see that a commentary on the American medical system is appropriate in that they caused my experience of bilateral eneucleation (removal of both eyes) to be far more traumatic than it needed to be. Granted there is nothing that could have been done to eliminate trauma from the experience completely, but much of what happened didn't have to happen and what I was not told that I should have known about was entirely unnecessary and made a necessary experience in to a traumatic one.

Unfortunately, this is far too often the case when medical procedures are performed. Too often the physician and staff involved are so used to the process that they forget that they are working on a living breathing person with fears and feelings about a very personal event of which they have little if any knowledge. Unfortunately, my home physician was the most helpful to me by being blunt about things but he was also the one who had the least to do with the experience. I did not know anyone who had had their eyes taken out or did not know how to contact them. I just figured that the doctors would tell me all that I needed to know and that the world would be fine as soon as I got over the surgery.

I was in store for a number of unpleasant surprises!

I am congenitally blind. When I was twenty-three, I had both eyes removed because my family physician said, "They look like crap and you can't see with them. Let's get 'em out and have it done with." I was all for that at the time because they had become rather painful. Besides, they had made it impossible for me to swim because I could not tolerate the chlorine in the pool water.

I had retrolentalfibroplasia (rlf) and was growing calcium deposits on my corneas and both globes were filling with blood. Of course, RLF is now called ROP, (retinopathy of prematurity) but the only difference is that physicians now acknowledge that they don't know the cause and younger folks are said to have ROP while older ones are said to have RLF. The difference is only in the age; its the same disease.

At any rate, it was agreed that the eyes needed to come out. I went and saw a local ophthalmologist. I live in a rural east Texas town and he was the only one in the town. He agreed that the eyes should probably come out and sent me to Houston to have them removed. The plan was that I'd go to Houston and be seen by a doctor there and he would make the final decision. Since it was pretty certain that my eyes would come out, I was told to expect to go back and have this done in about three weeks.

This was in February and I was an undergraduate student at the time. I had wanted to try and time the eye removal with my spring break so that I would not miss any classes. This seemed to me a very reasonable course of events since our spring break was in the middle of March.

Driving in Houston is an experience for someone who has never done it. It is probably sufficient to say that it is not as fast as driving in Germany, not as wild a ride as driving in Mexico, and not as safe as driving in a rural east Texas area. Somehow, my mother managed to get both herself and me to Methodist Hospital in one piece and the trauma of the trip did not scar either of us for life.

In the hospital, I was supposed to see a doctor at 11:00 that morning. We had gotten up at 5:30 to be sure to get there on time as it is about a three-hour drive to Houston from Nacogdoches where I lived. Of course, when we arrived it was a "hurry up and wait" story.

We didn't even see the first doctor until 4:30 that afternoon.

When the first doctor came in, he looked at my eyes for a minute and immediately left the room muttering something about students and once in a lifetime opportunities. Nearly immediately after the first doctor left, the door opened and I was set upon by a dozen or so medical students all poking, prodding, and asking questions at once. This was a fairly small examination room and I was seated in one of those "dentist chair" kind of arrangements so I pretty much couldn't go anywhere. They were all polite but I still felt very much like questionably good meat in an open display case.

When those doctors left, I had about a five-minute break. A few minutes after 5:00 that afternoon, the doctor I had come to see finally came in. He looked at my eyes, asked a few questions, and said, "I think we need to take them out. We'll do it at 7:30 in the morning." What a shock! I had planned on coming back in three or four weeks and this guy just told me he wanted to takeout my eyes on Tuesday morning which was tomorrow!

I didn't have any clothes with me except those I was wearing. I guessed that didn't matter because I would be in the hospital. My mother, however, had no clothes or other personal stuff, hadn't brought money for an immediate stay in a hotel, had no reservations anywhere, had not taken off work, and the list went on and on. The doctor simply said, "They're pretty infected and need to come out immediately. I very strongly recommend that it be down as soon as possible."

I went to the hospital cafeteria for my last meal before surgery. It was a cheese soufflé. I came to regret that later but it was quite good at the time. After I ate, we went up to my room. The doctor told me that my stay would be a couple days to a week at most. I figured I'd have to deal with the hospital room for a couple days and be done with it.

Shows you what I get for thinking. It was a pretty standard hospital room but it was large and I didn't have a roommate. I was glad of this later in the process.

To my surprise, I found that I was a little sleepy later that evening although I had thought I'd never be able to sleep. Even so, the nurses gave me some kind of pill that knocked me out pretty quickly. I suspect if they hadn't done that, I wouldn't have gotten much sleep.

Oddly enough, when I had gone down to watch TV a little earlier, people seemed to be feeling very sorry for me and expressed this a number of times. Even though there were people with cancer and other extremely debilitating diseases who were obviously likely to die and even though I was already blind people seemed to think a horrible thing was about to befall me.

They were right but for the wrong reason.

The next morning I got all kinds of shots and drugs that would have made me not care if someone had cut out my eyes with a kitchen knife. In fact, a couple years before a woman had intended to do just that to expel the demons from me. My dad and a couple of his friends managed to prevent her from an early surgery but she was quite intent on the project.

I don't remember the surgery (thankfully) but I'm told that it took about two hours rather than the forty-five minutes that had been expected. What I do vaguely remember is that, because of an allergic reaction to the anesthetic, I set about trying to throw up everything that had ever been in my body. Even under heavy Thorazine sedation, this continued for about twenty-four hours. Remember my cheese for the previous dinner? Well, after all that, I was unable to eat anything with cheese in it for nearly ten years and I love cheese!

When things finally settled down a bit and they allowed me to wake up, my mother was there and my sister had also come while I was out of it. She had, in fact, come from El Paso, Texas, which is nearly a thousand mile drive.

My first (maybe second if you count my digestive problems) surprise came very shortly. A nurse came in with my doctor and they checked my bandages. This seemed okay but the next day they took them off and the nurse began washing my eyes. I asked her "Why?" and she said, "The conformers needed to be cleaned." Naturally enough, I assumed these to be my new eyes.

Those first days after surgery are a bit confused in my mind because of all the drugs and because this happened twenty-five years ago. Along in there a couple days after the surgery, the bandages had been taken off my eyes and it was a very strange feeling not to have any eyes. One theory that sighted folks have as to why blind folks tend to rub their eyes and/or push against them with fists or hands a lot is that there is pressure making them uncomfortable. For me, at least, this was largely true. As soon as I awoke, I discovered both an empty sort of feeling in my "eyes" and a lack of pressure that I hadn't even realized was there. Now I only rub my eyes when they're giving me problems because of the prosthetics themselves. I'll say more about that later.

One evening four or five days after the surgery I was eating dinner (or "supper" depending what part of the country you're in) with my sister and mother. I was sitting in the hospital bed in my hospital room in my silly hospital gown that was open in the back as all of them are and eating my hospital food. Suddenly, without warning, I felt a muscle twitch in my left eye and something warm fell on to my lap.

"My God", I thought, "my brain is falling out!" There was what I immediately knew to be some blood and (I thought) brain dripping down my face. I believe that was the most terrified I have ever been in my life. It is making me extremely uncomfortable to write about it today even twenty-five years later. The matter was not helped by my sister's screaming and my mother saying "oh my God" and the emergency buzzer for the nurse going off. I was absolutely certain that I was either going to die or that I would be a vegetable with half my brains on the bed.

In came a nurse -- things would be okay because a professional was ready and willing to help and had arrived. She walked over, looked at the problem, and calmly said, "Your conformer just fell out. I'll put it back," which she did rather quickly after rinsing my new eye socket with some magical liquid. As she started to leave, I grabbed her sleeve and my mother said, "What is this?" Upon realizing that nobody had told us anything, she explained that there was now an implant in each eye socket and the tissue that used to go around behind my eye and form a shell for it was now stitched over the implant.

A conformer was now in each socket to help shape it as it healed. The conformer was like a large contact lens. She assured me that my brain had not fallen out and that I was not going to die. She told me that she would come back later that night or the next day to talk to me about the new eyes. I have often wondered if her attitude was because she was from a third world country so had not been raised in our fast American culture where people too often come in second to business concerns.

That nurse was as good as her word. She came back and carefully explained to me that my prosthetic eyes could not be put in until the eye sockets were completely healed but the conformers would help them heal in the correct shape. She explained to me about the implant that had been installed. She said it was called a gold ball. It was a ball with a hole drilled through it. The six muscles that control the eye were tied through the hole (three on either side). This meant that when the muscles moved that the gold ball would move and that would move the prosthetic eye on top of the implant, so it would look like my eyes were normally moving and, if I was lucky, I would look like I was tracking the person with my eyes. In that respect, I have been lucky.

The surgery had been on Tuesday morning and by that Sunday I was getting itchy to get out. The doctor told me that maybe I could in another couple days. So much for "a couple days, or a week"....

Taking care of business back home was becoming a problem for my mother. First she had thought we would be coming back the same day we went. Next we were told it would be a couple days or a week. Now we were being told that it would be over a week.

Can you imagine if a brain surgeon was so totally imprecise about when to do surgery? The public and other professionals would not stand for it but because we hold doctors so far above mere mortals, we simply allow that kind of behavior and with the massive inconveniences their behavior sometimes cause to be visited upon us. Despite all this, my mother going home and leaving me in the hospital so she could deal with problems there was never a consideration for her.

The first Monday on which I had my conformers I decided that I would wander around the hospital and maybe go outside. The nurses and doctors agreed to let me do this but only for a half hour. For some odd reason, they did not make me use a wheel chair. To this day I do not understand why.

However, I set off with my mom for the elevator and the outside world (at least outside to me then) without a wheelchair and glad to be walking under my own power. They had, after all, taken out my eyes, not removed my legs and feet. When we got on the elevator, I was ready to ride an express. It is probably better that I didn't.

We went down one floor and some, what my mother called, "blue haired ladies" got on. When the elevator started, it jerked rather hard. Oh my -- both of my eyes popped out and fell on the floor. Well, the conformers were clear, but the effect was spectacular. I was getting used to them and just turned to the ladies and said, "Could one of you please pick my eyes up for me?" The doctor says I'm not supposed to bend over since I just had my real ones taken out last week."

I suspect that, because they had been talking about leaving, those poor ladies were going to exit the hospital. However, at the next possible stop they both exited the elevator as fast as they could and that was on the eighth floor. My mother picked up my eyes and I went back to my room to clean them then not knowing that I would become much less careful about sterile procedures over time. (In fact, if I drop one now, I'll swipe at it with something that I happen to grab and pop it back in. This is not the recommended way to do it but it is often the most practical.) Either that or I'll just stick it in my pocket if I think it may really be dirty and tend to it later.

I was much more timid about even touching those eyes then even though I had practiced for several hours taking them in and out. When the eyes had been cleaned, I went downstairs and outside. Oh no!! The sun was gone! What had happened to the world while I had been in the hospital? Then I realized that I could still feel the heat from the sun and that it still must be there. Even though I had only a small amount of light perception, it had allowed me to see the sun.

Nobody had bothered to talk to me about the shock of not seeing it there or what it was like to be really blind. It wasn't that it was dark, there was simply nothing there. Imagine trying to pick up a pen with the hand on the back of your neck. That is nothing and that is what I visually now had.

Perhaps this failure on the part of the system was related to thinking that removing someone's eyes was so terrible they didn't want to talk about it or perhaps it was more closely related to the idea that if you ignore it will go away. Perhaps it was more of a "hide them in the closet" mentality or perhaps it was simply overlooked.

Things poodled along in the hospital for the next week. I had an unexplained episode of extremely low blood pressure (30/0) but the week mostly passed uneventfully. Finally, after nearly two weeks, the doctor released me to go home. What a joy it was to ride home in that wonderful Houston, Texas traffic. The cars honking and drivers driving like crazy people were wonderful. How could I have ever thought otherwise?

When prosthetics or conformers are put in an eye socket, the body sees them as foreign material and tries to get rid of them. This translates to muscle spasms in the lids that tend to pop the eyes out at odd times. It's a little like learning to play the guitar and having finger spasms. Unfortunately, I came to have such a problem with this that I could not keep the conformers in at all. I called my family doctor and he said to go back to the local ophthalmologist to see about it.

Bad idea!

When I got to this doctor's office, he looked at the situation. He said, "well, we just need to keep them in there." He proceeded to sew my eyelids together. I cannot describe the pain involved in having needles in your eyelids but take my word for it that it is not something you ever want to do.

Once he had sewed my eyes shut, the problems began. First, he used fine thread. However, even with the little plastic things he put under the thread to stop it, the thread began pulling in to my eye lids tearing them toward the center. This made a very uncomfortable situation. It was not unlike having a constant bee sting in two places on each eyelid. I was in such pain and so concerned about bumping them that I walked around like "Frankenstein" according to a friend of mine. I walked with my hands nearly shoulder-high, holding them like "claws". After a couple hours of this, I simply could not stand it so I used wire cutters and cut the threads myself.

Given a little time, the conformers stopped popping out and they stay in just fine now as do the prosthetics. I suspect that medication to relax the muscles would have been the best thing for me then.

After I had been at home for a week or two, I made an amazing discovery. I found that if I had my head under water in the bathtub, I could hold my nose and blow bubbles through my eyes. Imagine what a wonderful experience it was to find something really useful to do with my new augmented eyes!

What had happened was that the tear ducts were still dilated from the surgery to the extent that I could easily force air through them. I used to like to lie on the floor when friends were over and pour water in my eyes and bubble away. Once they got over the oddness of this, it became great sport. Well, I was an undergraduate and college students will do anything as this proves.

After a month or so, I started having trouble with the edges of my eyelids (lid margins) drying out. To my great dismay, the problem became worse and the eyelids and sockets turned inside out. The inside of the sockets were hanging out laying on my cheek below my eyes. This was a little uncomfortable but was more scary than painful. It did make some great pictures for my roommate who was taking a photography class and it got me a lot of attention from girls!

I still basically new nothing about prosthetic eyes. Around three months after the surgery, I went back to Houston to be fitted with prosthetics by George Constants. He was excellent and, by all accounts, did an excellent job in making my prosthetics. He explained about prosthetics and how they worked. Of course, I asked about keeping them clean. He said that they melt at 207 degrees, so not to even think about boiling them.

He suggested several solutions for cleaning. At this point (early July) I was quite happy with the eyes now that I understood them a little better. As it turned out, I still had several things to learn about them.

One thing that I was never told was that prosthetic eyes tend to cause the production of "eye goo" (mucous). If it is left in the eye, it causes the eyelids to be glued to the prosthetics and it is necessary to peel the lids off. This is a little uncomfortable. Another problem is caused by the mucous itself. It is often a little like having a runny nose in your eye but you can blow your nose much more easily than you can your eye. Since my tear ducts have shrunk to their normal size, I can no longer blow eye bubbles but I wonder if this might not clear out the eye goo."

A couple months after I got my eyes out, I went to a rehab center for Sonicguide training and another encounter with the medical profession. I had dropped an eye and apparently got a little dirt on it that I didn't sufficiently get cleaned off. The socket was dry and irritated. I went to the nurse thinking that she could help since this was a rehab center for the blind. She first suggested boiling the eye which I refused (remember they melt at 207degress?) and water boils at 212 degrees. Instead, she smeared the eye with petroleum jelly. This was not unlike pouring alcohol on a cut when I put it in the socket. Basically, I had just put oil in my eye socket. Of course I immediately took the eye out and tried to clean it. Oh! - Petroleum jelly doesn't come off with water. In fact, there isn't much that'll take it off that won't ruin the prosthetic.

For the next three or four days I was constantly washing the socket and the prosthetic trying to clean the "jelly" off and being really uncomfortable both because of the "jelly" and because of handling the prosthetics and the socket so much. As I have had the prosthetics I have learned that I am almost always the one who knows how best to care for them. I can usually tell the doctor what I need done and can usually take good care of them if I simply ignore 99.9% of what people suggest.

My most recent problems with the prosthetics are that I have a couple growths in one eye socket. The ophthalmologist tells me that these are fairly normal with prosthetics and keeps giving me drops to cure them. They'll go away for a week and come right back. They make the prosthetics fit poorly and are uncomfortable. He says that there are a lot of blood vessels in the area they're in so he doesn't want to cut them out. What's this? They already cut on that area in making the current socket for the eyes. What is the deal now, anyway?

If there has been a point to all of this, I suppose that it is that sometimes prosthetics are necessary but anyone considering having their eyes removed should know exactly what is involved. The surgery itself was the most painless surgery I have ever had and I have had a number of surgeries of different types. It is all the stuff that comes after that is the potential problem.

One aspect of this situation that nobody ever discussed or even brought up to me was the psychological one. When I had my eyes taken out, I could barely see light. Even so, it was a great psychological stress to me to go outside and find that I could no longer see the sun. Feeling it on your face is nice but it is not the same thing. Even today I will sometimes go outside and "look" directly at the sun and feel a little depressed that I can no longer see it.

There is something different about eyes. I have had toenails, cartilage, appendix, bone, and gall bladder out in addition to my tonsils, adenoids, and wisdom teeth. My eyes are the only things that I felt attached to and missed when they were gone. I have worried about what would fill the empty place when something was taken out but that is about all.

Maybe "eyes" really are a window to something...even for the blind.

Tom Brennan, CCC-A/SLP, RHD
Web page: http://titan.sfasu.edu/~g_brennantg/sonicpage.html
Web master http://titan.sfasu.edu/~f_freemanfj/speechscience.html
Web master http://titan.sfasu.edu/~f_freemanfj/fluency.html