Arlene S
I was born 7-11-1954 with dislocated lenses. My doctor in New York was Dr. George Merriam at Columbian Presbyterian in New York, NY. I started going to him when I was 3 months old. Dr. George Merriam retired about 2 years ago, but his son Dr. John Merriam is there. I've never met him, but I have a friend that was a patient of his. He really thought a lot of him and he was very helpful to my friend. Due to the dislocated lenses, I had 4 needling operations in a attempt to correct it. The last operation was done when I was 7 years old. When I was about 6 or 7 years old that was when I found out that I had glaucoma. It seems like I've had to take eye drops most of my life. The 2 main medications for eye drops were Timoptic and Pilocarpine. I never had vision in my right eye. I did have a small bit of vision in my left eye which wasn't really usable. I could see colors, the lines in the coloring books, reading very large print and if close enough to the screen I could see some of what was going on, on TV. Whenever I went to a new place someone would have to show me where the steps were, since I couldn't recognize them all the time. I never could see well enough to have eye contact or see facial expressions. When I was 9 years old, for about 2 weeks I was really sick with continuous eye pain and headache pain, along with nausea and vomiting. This may have been a combination of the glaucoma and a migraine. I could hardly stand hearing people talk out side, and at certain points during that time my eyes were locked shut and didn't want to seem to open. I've got to get a copy of my history and see what Dr. Merriam said about this period of time when I was sick. I've experienced more eye pain combined with headaches through the years. When I was 24 in 1978, Dr. Merriam informed my mother and I, that I had sclera mulasha in my left eye. The sclera is the skin of your eye ball, and the sclera Mulasha meant the skin of my eye ball was thinning due to the glaucoma pressure. We both wanted to know if he wanted to enucleate my left eye at that time, which means to remove the eye. He didn't feel the need to enucleate it at that time. He said for me to keep in touch with him and to let him know of any severe pain I experienced. He said I would know when something would have to be done. Soon after that in 1980 I moved to Kansas City, Missouri, and found an excellent, knowledgeable and personable eye doctor named Dr. Piebinga. His phone number is 816-561-1136. I continued going for regular examinations with him. In the early 80's I was experiencing a lot of eye pain with the glaucoma and migraines and migraines triggered by odors. Then I found out about a medication called Fiorinal that helped with the nausea and pain. In 1990 I moved here to Philadelphia. Since Philadelphia is so close to NY. I asked Dr. Merriam if he could refer me to an eye doctor that he possibly new here in Philadelphia, and sure enough there was someone. It was Dr. Frayer, a friend of Dr. Merriam's. In fact, Dr. Frayer and Dr. Merriam went to medical school together. Dr. Frayer reminded me very much of Dr. Merriam. On Thursday morning, December 19, 1991, I was cleaning in my bedroom. As I bent to pick up a piece of paper from the floor, I didn't realize how close I was to the bedroom door, and I hit the door knob with my left eye. It wasn't a hard bump or hit. As soon as it happened, I felt this warm sensation, and I knew exactly what had happened, that my eye collapsed. Another way to say it, is that the eye ruptured. I called for an ambulance for myself and had to go to the closest hospital 3 or 4 blocks away, rather than going straight to Scheie eye Institute. The emergency room Doctor at St. Agnes did get an ambulance within an hour, to take me to Scheie Eye Institute, and she put a shield over my eye. Between filling out all the necessary forms and waiting my turn, which I knew that it would be to the operating room to remove my eye, almost 5 hours had gone by. Up until toward the end of this waiting period, I started developing a headache, and started getting sick to my stomach. I was feeling okay until it came to this point. When I was brought in the operating room, Dr. Frayer told me my eye was unrepairable and that it needed to be removed. He told me since he was older that he was no longer doing surgeries and he told me he was going to have Dr. Michele Piccone remove my eye and that he would be in there with me. I asked him, how I was going to feel later and if I was going to have a lot of pain in my eye socket. He said I would just have a dull pain, and that the nurses would give me Tylenol for it. Of course, he was right, about me experiencing a dull pain in my eye socket, which wasn't that bothersome. What was more frustrating was being hooked up especially to the intervivos the first night. I had to get the nurse to walk me to the bathroom, with being hooked up, like that, even though I was really close to the bathroom. The next day, I wasn't feeling the dull pain in my socket much. What was more bothersome was the scratchy feeling in my throat from the anesthesia from the tube being down my throat during the operation the day before. The big cup of herb tea my sister bought me really helped my throat. The actual operation takes 45 minutes. After the eye is removed the doctor puts a form in your eye to keep the shape of the eye. The form is kept in your eye socket for a period of a month. At this point, you would be ready for your artificial eye. I did have some extra tearing from my eye socket at first. 2 days later Saturday I was allowed to go home. I made the mistake of resting my head back in the car when I should have had my face facing the back of the front seat, or I should have been laying face down on the back seat. The car ride will bring back those nausea affects of the anesthesia, that is why I'm telling you this. I went home to Long Island with my father. By time we got home, I was so nauseous, I had a cup of tea and went to sleep for about an hour. I felt better after that, and even felt well enough to eat. As it turned out my step mother made steak for dinner that night. After eating the steak I felt as if I had more energy in me, it just made me feel better. Nothing could have been better than eating that steak that night. I had to go for a follow up examination with Dr. Frayer and Dr. Piccone the next week on Friday, which my Mother and father took me too. What did I learn and find out that I didn't know? Right after I had my left eye removed, I found that the muscles in my eye socket still work, so I could focus up and down or from side to side. I learned about how the artificial eyes are made and the eye makers are artists called Ocularists. If you ever do cry your tears won't bother the artificial eyes. Actually the tears are one way of keeping them clean. It's not difficult to take the eyes out. You could wash them with dish soap and put the eye back in. Once a year I go back to have my eyes polished. As we get older the shape of our eye socket changes shape a bit, so the ocularists could make adjustments to the eye when going to have them polished. In my situation at the time, I still had my right eye. If your remaining eye looks unscarred and still looks good the Ocularists will make a copy of that eye for your new eye. Between the scarring of the needling operations and the discoloring of my eye from the glaucoma my right eye couldn't be copied. Susan, my Ocularist, asked me what color to make the eye and I was thinking Blue, since my eyes were originally blue, and then I told her to ask my father. When my father came in the room, he looked at Susan's eyes. He said to make them blue since they were originally blue and he asked her if she would pattern the eye after her eyes, so she did. She made the eye bluish gray. Susan told me she could make what was called a sclera shell which is what you wear in your remaining eye, of course in this case to match my new eye. She warned me that not everyone takes to it, but I told her that I wanted to try it. The sclera shell is sort of like wearing a eye contact in only wearing it during the day. Susan started molding the eye, and testing for the right size for my eye and the eye socket. The sclera shell and the eye were ready the next day. I'll never forget Susan's reaction when she put them in me. It just gave me good goose bumps. She said, "Oh, my God, Arlene,. It looks like you're really looking at me." The eyes just looks so real, and I've met and had some funny situations where people thought I could see. Wearing the sclera shell in my right eye was okay for about 3 years. Then little by little it became uncomfortable. It felt like pressure above my right eye on my forehead and head, and made me feel draggy and tired. I told Dr. Piccone and dr. Frayer how it felt, and Dr. Frayer said he had heard this experience from other patients. We agreed that I should try it a little longer, and I did for a year. After a while I started feeling some nausea along with the tired feeling and the pressure feeling. When I first told them that it was getting uncomfortable to wear, I was asking to have my right eye removed, because I knew the difference in wearing the artificial eye in my left eye socket verses wearing the sclera shell in my right eye. The difference is with the artificial eye in my eye socket it just feels like it's a part of me, in meaning that it doesn't feel as if there's something foreign in me. I told Dr. Frayer how uncomfortable it was getting, and the next day I received a phone call from the hospital saying I could have it done the next week. Dr. Piccone removed my right eye April 17, 1995. In fact I went in what they call short procedure. I got to Scheie Eye about 12 o'clock, was in the operating room having my eye removed at 1 o'clock, and left to go home 7:30 that night. That pressuring tired and nausea feeling that I had with wearing the sclera shell, wearing sunglasses affected me in the same way when I had both my eyes. It was for appearance sake I tried wearing sun glasses. . Susan made another copy of my eye and the right eye is just as comfortable as the left eye. I Thank, God, that I don't have the glaucoma pain any more, and that I have an inner good feeling that because of the way my new eyes look, I'm easier to look at. I'm very much relieve to not have that eye pain with headaches. My heart goes out to everyone going through the glaucoma pain and the pain also going into a headache too. That is something I'll never forget because of my own experience. I have migraines from time to time that come on their own and sometimes the migraines are triggered by different odors such as perfumes and cleaning products. If I could answer questions for you, or anyone else you know, feel welcome to write to me. Even if it's to write about your feelings of frustration about it. I'm not an expert, but if you could see well enough to read printed matter and are able to see TV, don't watch TV or read too long of a time. If your eyes are getting tired, realize it's time to quit reading or watching tv for that period of time, because beyond that that's just straining your eyes. In my situation, I started in school with reading very large print. When I was about 7 that was when I was beginning to have trouble seeing the letters and the words. I tried to read so much that my eye would get blurry and teary. When I was 9 I had to start learning Braille. I was so excited about learning Braille, since I knew I wasn't going to have to struggle reading any more and would be able to read comfortably when I learned it. I started having trouble seeing colors in my early 20's, so I think the little bit of vision I had just kept dwindling through the years. I realize if you're an adult reading this, all this is harder for you to adjust too, but we're here to help each other out. I enjoy knitting, reading, cooking and enjoy getting together with friends and my family. I'm single so I don't have my own family. My work experiences have included: switchboard operator, emergency dispatching, information and referral person for an organization that referred the people to the places where they could get financial assistants for their bills and information for other necessities, and working at Home Depot as a telephone operator and doing the vendor contact. The most rewarding of my work experiences were the emergency dispatching, the information and referral work and working at Home Depot. Smoking marijuana and eating foods and beverages with marijuana like the following: Brownies, spaghetti, and drinking tea was effective in taking the eye pain and nausea away. I didn't know at the time about the prescribing of cannabis from doctors and about the studies that were being done with patients to test the effectiveness of Marijuana. Knowing my own experience with glaucoma, migraines, and marijuana, and how it took my pain and nausea away, and now reading other individuals experiences and the studies, I feel very strongly about the legalization of marijuana for medical use. I also totally support the cannabis centers to be kept open and the studies to continue for those of us that need the effectiveness of cannabis. In closing I want to give you Dr. Piccone's phone number for the people in the Philadelphia area, and I'll also give you Dr. Piebinga's number again for people in the Kansas City area. Dr. Piccone 215 662-8017 Dr. Piebinga 816 561-1136. Scheie eye institute http://www.med.upenn.edu/ophth/ Arlene Silvestri arlene@concentric.net
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