Roger P
Introduction Glaucoma from the perspective of a 49 year old male who’s had it since he was twenty five. My name is Roger Peterson, and I live in Arizona with my wife and family. Offered in the spirit of wanting to help others who may benefit from my experiences, this is the story of my glaucoma. Glossary You won’t need a glossary of terms. I despise big and authoritative medical terms, so I’ve made every effort to avoid them. My doctors talk to me in my language, or they don’t talk to me at all. I changed the names of all of my doctors to fictitious names because I felt that I should; the rest is either true or my heart-felt personal opinion. Index Part One: In the beginning… Part Two: Marijuana (or more to the point: the lack of it) Part Three: Laser surgery Part Four: Invasive Surgery (Trabeculectomy) Part Five: Recuperation Part Six: Trabeculectomy FAQ’s: Part Seven: Epilog
Part One: In the beginning… “Hmm! That’s interesting. Let’s see how that other eye looks.” As the soft blue light withdrew from my right eye to move to my left, I adjusted my head in the stirrups and fixed my gaze on a spot on the wall. “That’s interesting too!” He paused for a moment with a thoughtful but troubled expression… “You know, Roger, I’m going to take those readings one more time if you don’t mind. Are you comfortable?” he asked. “Sure doc, I’m fine. Did you ever get that tune-up done?” Outside, it was a warm and clear spring day in Denver, Colorado. The year was 1975. It had been a couple of years since my last routine eye exam. I was a Mazda mechanic; my ophthalmologist drove a Mazda RX3. Cars and performance driving always came up in our conversations, so I thought I’d get the ball rolling. “Yes, I did,” he replied, “and she runs like a top. I’ve got a few questions to ask, but I’d like to concentrate on you for the moment.” This was how it began. Doc, if you’re out there in cyberspace reading this one evening in your study, I’m still around, and thanks to you, I’m still able to work as a mechanic. I’m overhauling jet engines in Arizona now, and I’ve been through a lot with my eyes. Since you weren’t much older than I was back then, I’ll bet you’re still changing lives. Read on if you have the time. Dr. Duncan went on to check the pressures in my eyes several more times that day without saying another word to me. I could tell something was up from the way he adjusted and readjusted his equipment. It was as though he couldn’t believe what he was seeing. I waited patiently and without much concern. Heck! I was as healthy as anybody could be. I had no idea at the time how my life was about to change. “I’ve got something to talk to you about, Roger, and it isn’t cars. I want you to pay close attention to me. As hard as it is for me to believe given your age (twenty five) it appears you have glaucoma.” I had heard of glaucoma before, but I actually knew nothing about it, other than it was somehow associated with blindness. Suddenly, I could feel a knot in my stomach. “You’ve got my attention, Doc, go on.” Dr. Duncan retrieved a model of the human eye and said something to his receptionist. He then began to carefully explain in considerable detail how the eye worked, what glaucoma was, and how it was he came to his conclusion. That’s why I liked Dr. Duncan: he took the time and the care to be clear. I understood him, and he was patient and understanding of my many questions. “We’re going to start you out on this, Timoptic. I’m going to start you out on the lower dose and have you come back in two weeks. It’s very likely we’ll have to make some adjustments. We’re going to be seeing a lot more of each other for awhile. We’ll talk about my car next time.” And so it was; I had glaucoma. I even understood a little about it, but I wanted to know much more. Dr. Duncan was right. We had to move up to the stronger dose, but that dose seemed to satisfy him in future visits. I would come back in three month intervals for awhile, then every six months—if things continued to go well. I was something of an anomaly having glaucoma at such an early age. Dr. Duncan couldn’t predict the path of the disease, but he made it clear, I was going to live with glaucoma for the remainder of my life. There was no cure, only treatment. Eight years went by without change in my medication. I had recently moved to Arizona with my wife, and I was seeing a new ophthalmologist for the first time. My new doctor seemed reluctant to accept what I was saying; I was so young. My pressures had fairly abruptly crept back up to the low thirties, however. Too high! That’s one of the problems with eye pressures: you generally can’t feel their day to day fluctuations. Now most of my doctors have told me with absolute conviction, “You can’t feel your eye pressure at all unless it shoots really high to the point of pain.” I beg to differ. I now can “feel” those minor fluctuations without pain. I can often tell when the pressure is a little too high. It’s a feeling I’ve developed over the years. Doctors will shake their head upon reading this, but that’s ok. We experimented with medications and ended up with a combination of .5% Timoptic and 2% Pilocarpine. The Pilo would have to be used four times a day, and though the headaches would pass, it also had the negative side effect of making the world a significantly darker and blurrier place in which to live. Being a mechanic had gotten harder, and my wife had to get used to my having lights on during the day. Fortunately for me, my doctor had taken the time to explain to her that this would be the case, so she gracefully left them on for me. If you live with others, it’s important that they be included in discussions of your condition. It’s easily forgotten since it doesn’t show. The new drug combination wasn’t quite enough after a few months, so we tried using Pilocarpine saturated inserts in place of the Pilo drops. The inserts were to be worn in the lower half of the eye. They were huge with bright white borders. Occasionally they would creep up from under the lower eye lid and startle anyone looking at me up close. Also, they made standing on my head under the dash of a car impossible. Back to 2% Pilo and Timoptic, but now we’ll throw in a third medication. This is how life went for several more years: experimenting with combinations of Pilo, Timoptic, and the ever-changing third drug. My doctor didn’t want to move me up to a stronger Pilocarpine because of the difficulty I would have in seeing. After all, we’re trying to preserve my vision here, not mess it up. The third drug never got quite right, and the pressures wouldn’t be coerced below twenty four. Too high to stay at for a prolonged period—in my case, at least. It’s also important to remember that every individual is different when it comes to glaucoma. What might be too high a pressure in one individual might be tolerated just fine in another. That’s why it’s beneficial to continue seeing the same doctor as long as you can. How else will they become familiar with your unique characeristics?
Part Two: Marijuana (or more to the point—the lack of it) “There’s marijuana, Roger, that’s reported to be somewhat effective in treating glaucoma, but I don’t recommend it for the following reasons. One, it’s smoking, and smoking is bad for your health. I’m here to protect and preserve your health,” my doctor went on, “not destroy it. Two, if you were to get marijuana from somewhere, how much of a dose would you get if you smoked a certain amount? There’s no way to meter or monitor the dose. And three, it’s like alcohol, it effects your perception, and this could be hazardous working around heavy and dangerous equipment. No employer would want you working under those circumstances. It’s too much liability for them.” “All good points, doc,” I said, “and I’ve no interest in pursuing the matter.” Case closed on marijuana. What’s next? Blue argon laser. I’ve got a third doctor now. The last one retired, but Dr. Frank was an associate of his. “Laser is quite new, Roger, but I think you’re an ideal candidate for the treatment.” I agreed to give it a try. I didn’t ask how many times he had done it previously. I didn’t want to know. He was careful and good; that’s all I needed to know.
Part Three: Laser surgery The laser was at the hospital nearby. Dr. Frank put a big glob of clear jelly on my eye and stuck a large thick lens over the top of my cornea. He looked through the scope of the laser and assured me “…it doesn’t hurt.” He turned the lens, aimed carefully, and at the instant I saw an intensely bright flash of light, my eye involuntarily rolled up into my head. There was a most pronounced burning sensation. It seems certain individuals have pigmentation in the area of the surgery, and when shot with a laser, this pigmentation can cause a sensation that I can only characterize as pain. I couldn’t make my eye come back down. “That’s alright,” said Dr. Frank, “it’ll come down on its own.” Only forty seven more burns to go in this eye, then he’s going to do the other one. I’ll come back in a few days so he can do another forty eight burns per eye, too. The laser burns tiny holes in the trabecular mesh—the porous part of the eye between the wall and the iris. This is the region of the eye that is supposed to carry interocular fluid out to the body. Mine wasn’t porous enough, so Dr. Frank burned half the circumference of each eye on one day, he checked the eyes a few hours later and again the next day, then he burned the remaining circumference. This two-step procedure is done because of the potential for swelling, bleeding, and pressure spikes. There really isn’t much in the way of recuperation or recovery following laser surgery. You take it easy the day of the surgery, and you get checked that day as well as the next (assuming they still do it more or less the same). But the procedure doesn’t knock one out of commission very long. In retrospect, the procedure was only modestly successful. I still had to use Timoptic twice a day, and the pressures were still in the low twenties. I had gotten off of Pilocarpine… for the moment. Because of changing insurance, I’m off in search of a new ophthalmologist. Within a few years (it’s the late eighties by now) I’m back on Pilocarpine along with the Timoptic, and not long after that, we’re experimenting with that problematic third drug again. Soon, the Pilocarpine is a 4% Pilo and a 1% epinephrine (P4E1). Its temporary impact on my vision each time I use it is profound. I’m complaining loudly about not being able to see well enough to even drive safely, let alone work effectively. But my latest doctor, Dr. Allen, doesn’t get it. It isn’t until he has his assistant do a refraction while I’m at the height of my visual imparities that my problem becomes crystal clear. “Holy cow!” he exclaimed at seeing the results. “You really do have a problem!” Since I’m using P4E1 four times a day, I need to switch four times a day between Coke-bottle glasses (when the Pilo is in effect) to my regular glasses each time it wears off. Headaches and poor light are a constant way of life. At least I could now see a pedestrian in the road. I feel safe driving again. My pressures continue to hang around the mid-twenties no matter which drugs I use (and by this point I’ve used pretty much all of them). My visual fields remain normal, and my retinas don’t show too much cupping or poor form, but the disease continues to progress. Dr. Allen, who enjoys the reputation of being one of the finest eye surgeons in the area, doesn’t want to do invasive surgery yet, but he acknowledges it’s in my future. I’m now in my mid-forties. Insurance rears it’s ugly head again and I’m off in search of another new doctor. I really hate having to change specialists so often. It’s like starting over each time. My ophthalmologist this time, Dr. Malkin, also has an outstanding reputation, and I’m glad to be in his care. It’s early 1998, and my left eye is showing early signs of impending vision loss; the retina is losing definition or proper shape. Dr. Malkin and I try a variety of the latest and best medications, but the pressures remain in the mid- to upper-twenties. My body is becoming accustomed to medications, and surgery has now become a viable option. The choice to go under the knife or continue struggling with medications at higher risk of vision loss, however, is mine.
Part Four: Invasive Surgery (Trabeculectomy) The procedure being discussed is called a trabeculectomy. The object of the procedure is to use the eye itself and fabricate a valve in the top of the eye to relieve pressure. During the procedure, a long incision is made into the eye well above the cornea. The clear layer is pulled back, three sides of a rectangle are cut into the white of the eye making a flap, and a hole is punched from the inside in the layer under the flap to make the valve. Fluids can then pass through the hole, gather under the flap in what is called a “bleb,” and then be reabsorbed into the body. The eye is still sealed by the clear membrane. Anti-cancer drugs are used on the flap to inhibit healing, and a small wedge of iris is removed so it can’t float up and plug the hole. Iris is the consistency of wet tissue paper. Also, the loose corners of the flap are sewn down with tiny sutures that are actually sewn into the eye but which can be removed later. This allows some—but usually very limited in terms of results—adjustment to the valve mechanism. I had the procedure done, first in the left eye, then in the right. Near completion of the hour-long procedure, the long incisions were sewn shut first on the inner-most layer of the eye so it could be pressure tested to make sure it held. Then the outer layer was sewn shut with a contiguous dissolving suture. Bed rest was required for one week, and work was restricted to lifting of ten pounds max with no stooping or bending down for one month. Even a sneeze could be hazardous at first.
Recuperation I came home from surgery with a metal guard type of eye patch over my eye for protection from impact, and a cloth eye patch taped over the eye underneath. The eye had been paralyzed during surgery so it wouldn’t move, and the covers prevented me from trying to use it. I had a large bottle of pain pills with codeine; I ended up taking them all over that first week and even requested a refill. I was instructed to be very quiet for the first week. The day of the surgery I had no desire to move or look around. I caught up on sleep in a big way. The following day my wife drove me back to have the cloth patch removed. My eye looked swollen and angry, but Dr. Malkin said it looked good. I took his word for it. If I had to guess, I’d say Dr. Malkin is one of the finest eye surgeons in the country, and as an added bonus, he’s a nice guy, too. I would sleep with the metal patch on for several weeks so as to prevent laying on my eye. I would also start using atropine to keep the inner eye muscles paralyzed, antibiotic eye drops to prevent infection, and steroid drops to reduce inflammation and scarring. The healing process would be best if it went slow. For the record, I waited just under eight weeks between surgery on the left eye and surgery on the right. I know it was necessary, but I disliked the atropine. It made my vision really blurry and awkward in that eye. Also, as a part of the surgical procedure, the lens inside the eye is floated forward and thus out of position. The lens is what determines the focal length of light rays entering the eye, so being out of position also blurs vision. The lens does tend to move back to its previous position over time, but we’re talking weeks to months before that process is complete, and there’s no guarantee it will move back to the same location it came from. In my case, both of my lenses moved back pretty close to home. I waited several months following my last surgery and then went and got new glasses with a prescription that was the average of several refractions taken at different times of the day. I now see very well. None of the post-surgery drops had to be used for too long: anti-biotic drops for a few days, atropine for a couple of weeks, and steroid drops for perhaps a total of a month, but tapering off the dose as time went by. I’m drop-free for the moment, but never say “never.”
Trabeculectomy FAQ’s: 1) Did it hurt? No. Surprisingly, it didn’t hurt. The eye was irritated for some time afterward as one would expect, however. You’ll take pain pills following the procedure, but you won’t be in great pain. You’ll be uncomfortable. 2) Were there any problems? It depends on how you look at it. From my perspective, the huge red cloud of blood that seemed to flood my right eye two days after the second procedure was a problem. If I moved or turned my head, the cloud would obscure 100% of my vision in that eye. Actually, it was merely a small thin clot, and it dissolved in a matter of a week. Not a problem. 3) What about the stitches? I felt the long row of outer ones a little, but only for a few weeks, and not bad. They’ve long since dissolved. I’ve had one of four of the semi-permanent sutures holding down the flaps removed. This was done with local anesthetic and a pair of sharp tweezers. 4) What about the pressures? That’s why I had one suture removed: they’re starting to climb. Initially, they were very low, say in the 4 to 6 range. Any lower than that would also be a problem. An eye could collapse, or circulation could be impaired . Today, they’re in the area of 12 to 14, so Dr. Malkin removed one of two sutures in the flap of one eye. I’ll continue to go in every three months. I’ll update this page from time to time. 5) What was the surgery like at the time? I was awake and talking nearly the whole time. A lovely nurse stood at my side and held my hand for the duration while the doctor and I chatted about what he was doing. The hand-holding was actually a very big comfort, and I highly recommend doctors performing this procedure incorporate this feature. I was completely sedated at first so a long needle could be inserted behind the eye to “block” it, or paralyze it, with medication. A clamping device is also inserted around the eye at this time. It gave me black eyes, so it must have been a serious clamp, but I couldn’t see it, nor could I see anything during the surgery. I awoke to a state of drug-induced calm, but I was lucid enough to talk and make sense, and I can remember everything. Dr. Malkin patiently talked me through the entire procedure as he worked. I could feel some of the operation, but it never approached discomfort. I would recommend you do it just as we did if you have to have this procedure done. It’s actually terribly fascinating. 6) How do your eyes feel now? Scratchy. They water funny. And they’re very sensitive to foreign bodies—even the tiniest ones. I don’t expect they’ll ever feel normal again, but they don’t feel bad… just different. 7) How many more times can you have this procedure? Twice, I believe. 8) Then what? I’ll cross that bridge when I get to it, but being only 49 years of age, I’m naturally concerned for my future. I’ve hopefully got a lot of years to live, and if my body does as it usually does and heals quickly (remember, the site is treated with anti-cancer drugs so it won’t heal, but it still eventually does) I’ll be heading for that next operation—probably within comparatively few years.
Epilog Dr. Malkin is no longer a member physician on my insurance plan. Theoretically I should be looking for another doctor since my insurance company—an HMO capitation plan—didn’t select his doctor group this bidding go around. I like him so well, however, I continue to see him and pay for it myself. He is good enough to work with me on the cost of his services. “What’s a capitation plan?” you ask. Thank you for asking. I’ve asked a number of doctors what is meant by the expression “capitation plan.” This is a summary of how it was explained to me by all of them. A capitation plan turns the concept of care upside down. Rather than the insurance company assuming the majority risk, as it used to be before we had so many lawyers, the doctor or doctor group is in the untenable position of risk management. The insurance company is now a middle man (so to speak) between the money (your employee group) and the doctor (your care). You see, under a capitation plan, the doctor or doctor group gets the money to take care of a certain patient group up front. It’s now up to the doctor(s) to decide how to spend it—or not spend it—on you. Obviously, this puts a potentially unhealthy incentive precisely where it doesn’t belong. Pretty slick, huh? What’s an HMO? Actually, HMO is a misnomer in my opinion. For me, HMO’s have been more like a BOC (Bureaucratic Obstacle Course). This sentiment is based on decades of personal frustration. I can’t say for certain that it’s due to my using certain eye medications for so long, but I now have an irregular heart beat that can become quite bothersome at times. Personally, I blame it on those eye medications that impact the heart, but I have nothing to offer in the way of proof—just suspicion. Read the literature in the eye drop box, and ask your doctor about your medications. Some side effects are pretty minor; some aren’t. And most importantly: pay attention to your body. To add insult to injury, and for whatever reason—my age or my history of using so many medications—cataracts are my latest eye development. Here again, and because I’m only forty nine, I blame the medications that contribute to clouding of the lens. And here again I have no proof. Someday in the not-too-distant future I’ll get plastic lenses installed in my eyes, lose my glasses, and start wearing those cool looking non-prescription only sunglasses. They’ll go perfect with my shaved head and graying beard.
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