Coping with Vision Loss
June 14, 2000
Norma Devine, Editor
On Wednesday, June 14, 2000, Dr. Rick Wilson, a glaucoma specialist at Wills, and the Glaucoma Chat Group discussed “Coping with Vision Loss.” Here are some highlights from the evening.
Moderator: The topic tonight is “Coping with Vision Loss.” Any questions for Dr. Wilson?
P: Dr. Wilson, are most of your patients stressed out about their vision loss, or do most seem to be able to take it in stride?
Dr. Wilson: It varies dramatically, often depending upon how long they have had glaucoma, the state of the disease, what their visual needs are, and how many other people depend upon them.
P: Are younger people more stressed than older people?
Dr. Wilson: Not necessarily. I haven’t noticed a consistent trend with age.
P: I’m 44 years old and earn my living as a writer and editor. I’m a little afraid of not being able to support myself.
Dr. Wilson: If your pressures are controlled, you should do fine. Also reading vision is lost very late in glaucoma.
P: I, for one, am pretty freaked out about vision loss. I have three children who count on me. I hope I can get them all through college before my vision loss restricts my activities significantly.
P: How can one not be stressed by vision loss? Doctor, what do you tell your patients to help them cope with vision loss?
Dr. Wilson: I tell them that most loss of vision occurs before the patient sees the glaucoma doctor; that I can keep most people from progressing very much once they are under treatment.
P: I am fiercely independent. That probably makes me more of a wreck — the fear that I will be so dependent.
P: Do problems arise that are specific to glaucoma vision loss?
Dr. Wilson: Most people hate to stop driving . The loss of mobility is a loss of independence.
P: In regard to coping with poor sight, I hope everyone knows that you don’t have to be blind to use the Library of Congress services for the blind and handicapped, including books on tape. I don’t know how it works in each state, but if you can’t read easily or for long, check into it.
P: Sometimes you just have to accept vision loss. I had a detached retina with a 50 percent loss of vision overnight.
P: Talking to you guys helps me cope with my vision problems.
Dr. Wilson: It is crucial to have a confidante, someone you can talk over your fears with.
P: I am newly diagnosed with open-angle glaucoma. A recent visual field test showed some loss compared with two years ago. However, my doctor says that the optic nerve is healthy and shows no damage. It that possible? The loss of visual field is minimal. My pressure was 28 and 29, then when it went up to 31/32, I was started on Xalatan immediately. Today my pressure was 20 mm Hg in both eyes.
Dr. Wilson: Fewer than 15 percent of glaucoma patients will have visual field loss without really noticeable nerve damage.
P: How can one have glaucoma if there is no damage to the optic nerve?
Dr. Wilson: You can’t. It may just not be noticeable.
P: So field loss can show up even though 30 to 40 percent of nerve fibers have NOT been lost?
Dr. Wilson: Usually it takes about 30 to 40 percent of nerve fibers to be lost BEFORE visual field loss is evident.
P: The doctor told me that my glaucoma is “advanced.” I’m assuming that classification is based on nerve damage and visual field loss. Correct?
Dr. Wilson: Yes, correct.
P: I’ve read that 90 percent of blindness from glaucoma can be prevented. What kind of patients constitute the other 10 percent?
Dr. Wilson: Only three or four glaucoma patients have gone blind on my watch in over 20 years who did not have a hemorrhage in the eye that caused their blindness. I think the ten percent figure is inflated.
P: That’s very comforting to hear. What would cause a hemorrhage?
Dr. Wilson: Low pressure after surgery in an older patients with brittle vessels in their eyes.
P: If a patient has one hemorrhage, is there likelihood of another one occurring?
Dr. Wilson: Yes, there is a greater chance in the other eye.
P: What happened with the three or four patients who went blind?
Dr. Wilson: One had an infection, one had a low-tension glaucoma that must have had some kind of systemic circulation problem, and the other two had eyes that had undergone multiple operations and just gave up the ghost.
P: What does “gave up the ghost” mean?
Dr. Rick Wilson: By “giving up the ghost,” I meant the eyes had stopped making fluid and ceased to function.
P: I’ve been told that I am a rare case. I’m only 40, and have Normal Tension Glaucoma that is already advanced. I feel awful that I will be a burden to my husband, and we will not be able to play golf and enjoy retirement.
Dr. Rick Wilson: You should still be able to play golf, unless your glaucoma is very far advanced. You can keep your eye on the ball as you hit it, and if your diminished contrast sensitivity prevents you from seeing its flight, someone else can watch for you.
P: Whoever I play golf with is used to me saying, “Did you see my ball? I can’t see it.”
P: Doctor, before the visual field shows loss, can an astute specialist detect optic nerve damage by examining the eye?
Dr. Wilson: Yes, that happens all the time.
P: What does surgery involve?
Dr. Wilson: What kind of surgery?
P: The surgery you perform if the drops don’t work on someone age 40.
Dr. Wilson: That is usually a trabeculectomy. There’s little pain, some foreign-body sensation, blurred vision improving gradually with time, but lasting two to four weeks.
P: I’m actually more afraid (terrified is more like it, sometimes to the point of shaking) of complications from a trabeculectomy causing blindness than I am of the glaucoma itself.
Dr. Wilson: That’s understandable. But the complications happen to probably fewer than five percent of the patients, whereas the glaucoma is progressive in 100 percent of patients whose pressure is too high, which is why the surgery was recommended.
P: I was scared, too. But I would rather lose sight fighting glaucoma, than to have it taken slowly.
P: Would you use Mitomycin C if you were operating on the patient who is frightened of complications from surgery?
Dr. Wilson: That depends upon how low his IOP needs to be, how young he is, how much inflammation the eyedrops are causing in him, and so on. These days I use either 5-FU or Mitomycin on almost everyone.
P: My husband had a perfect trabeculectomy, but hemorrhaged on the way home. He lost eighty percent of his vision in that eye. Surgery was done as an emergency, and the eyeball was not in the best condition. He was 48.
Dr. Wilson: Operating on patients with very high pressure, especially if they have had it for some time, can cause a real shock when the pressure drops rapidly to usually lower than normal levels.
P: Has there been any correlation between auto-immune responses and glaucoma?
Dr. Wilson: Yes. Marty Wax in St. Louis has shown a definite correlation between low tension glaucoma and autoimmune disease.
P: Is there any correlation between glaucoma and ocular rosacea?
Dr. Wilson: Not that I know of.
P: If one has rosacea, is it more probable that it will spread to the eye? Do you have any patients with ocular rosacea?
Dr. Wilson: Yes, it is more probable. No, I don’t have any patients with ocular rosacea.
P: I’m 42, was recently diagnosed and will have my first visual field test on Monday. Can you give me an idea of what sort of treatment I’ll be receiving?
Dr. Wilson: In the U.S., we usually start with drops, move on to laser, if appropriate and the drops do not work, and then to surgery, as a last resort.
P: Will the drops halt the damage to the optic nerves?
Dr. Wilson: If the drops lower IOP enough, the optic nerve damage will stop.
P: What’s the incidence of disk hemorrhage in the normal population, please?
Dr. Wilson: Disk hemorrhages only appear when the vitreous jelly pulls off the back of the eye and the nerve face, so they are very rare in the normal population. However, they are fairly common in glaucoma.
P: Would you send patients home with very high intraocular pressure after trabeculectomy? This seems to be the norm with insurance pressures.
Dr. Wilson: Drive-through deliveries and trabeculectomies are being forced on us.
P: Then it’s better to have a trabeculectomy sooner rather than later so that pressure is not high for so long that suddenly lowering pressure surgically causes additional trauma?
Dr. Wilson: Yes. The British and Scottish have shown that repeatedly. Surgery is a better treatment than drops and laser if you want to prevent glaucoma damage.
P: How high is the pressure before you do the surgery?
Dr. Wilson: High enough to cause further damage to that particular patient. I have operated on people with IOPs of 12 and also 80.
P: Do you use Mitomycin in the first trabeculectomy, or only if the first trabeculectomy failed?
Dr. Wilson: I may use a weak dose of Mitomycin on a first time trabeculectomy, especially if the patient is Hispanic or African-American, is young or has inflammation.
P: Does the disease progress more quickly in African-Americans?
Dr. Wilson: It is a more virulent disease in African-Americans, starts earlier on average, and is less responsive to drops and surgery.
P: So blindness is inevitable for African-Americans?
Dr. Wilson: No! Not at all. Just more of a struggle.
P: But you just said that drops and surgery aren’t as effective for African-Americans.
Dr. Wilson: I said they aren’t as effective, not ineffective.
P: Is there any correlation between any disease conditions such as leukemia (CLL) and glaucoma? I do not think there is an answer.
Dr. Wilson: Patients with poor circulation and anemia may not have sufficient blood flow to the optic nerve, and that may cause their glaucoma or a worsening of it.
P: I have congenital glaucoma (Axenfeld’s anomaly). I used Humor sol (anticholinesterase) for 25 years and now it is not being made. My left eye is blind and my right eye won’t respond to any of the current drops. Do you have any suggestions for a comparable medication? I take Diamox (1000 mg), Timoptic, and Alphagan. I’m allergic to Xalatan.
Dr. Wilson: I thought they still made phospholine iodide.
P: I was diagnosed 17 years ago, but in the last three and a half years I’ve progressed from maximum medical management with drops to argon laser, laser iridotomy selective laser, and trabeculectomies. How unusual is it to go through so many treatment so close together?
Dr. Wilson: It is moderately unusual, but not that uncommon.
P: How long can a patient be on Diamox?
Dr. Wilson: I had one elderly (in the end) patient who was on Diamox for 30 years.
P: Should patients using Diamox have blood tests?
Dr. Wilson: Blood should be checked for low serum potassium when using a potassium-losing diuretic. Anemia is only a problem during the first four months.
P: Can eye drops advance the development of cataracts?
Dr. Wilson: Yes, they can. But the ones in common use today do that very little, if at all.
P: What long-term effect might laser surgery have on the health of the eye (fibers and lens) if cataract surgery becomes necessary? If patients with exfoliating glaucoma are particularly susceptible to cataracts, wouldn’t damage from laser surgery lower the success rate of cataract surgery.
Dr. Wilson: No, it does not seem related.
P: Is it normal for an eye to continually drain fluid six months after a tube shunt is inserted into the eye?
Dr. Wilson: No. Either the eye is irritated or somehow the drainage system in the lids has been thrown off.
P: After the tube shunt, I lost vision completely for a couple of days. Prior to surgery I could be corrected to 20/30 vision; now the best correction is 20/70. Can this be somehow related, and if so, what can be done?
Dr. Wilson: It might be related to increasing cataract when your pressure was way down or to changes to the retina.
P: What’s the best way to find a glaucoma specialist?
Dr. Wilson: One way is to ask me. Where do you live?
P: I live in Orange County, CA.
Dr. Wilson: There is a glaucoma specialist at the University of California at Davis. I spoke there about two years ago. The University of Southern California is also an excellent choice. Also, try www.glaucomaweb.org.
P: Check the website of the American Academy of Ophthalmology. The website is www.eyenet.org.
P: Before I was recently diagnosed I was considering lasik surgery for correcting my vision. Would that be a dangerous thing to do now? Would it make matters worse?
Dr. Wilson: Yes, I probably wouldn’t. But if you really wanted to, you could get a diurnal curve of your eye pressure before and again after the surgery. That way the doctor would have a fudge factor for measuring your pressure after the corneas had been thinned.
P: I’m newly diagnosed with open-angle glaucoma. For the first time, I also had some high blood pressure readings. I am also to undergo further testing for poor circulation. I am just trying to learn why all this happening at once. Did poor circulation bring on high blood pressure, then maybe that caused an elevation in intraocular pressure?
Dr. Wilson: You are probably close. Hypertension and glaucoma are linked after about two years.
P: What does two years mean?
Dr. Wilson: It takes that long for the effects of the high blood pressure to affect the eyes.
P: Do you monitor a glaucoma suspect with IOPs of 21 and 20?
Dr. Wilson: You should be monitored carefully every six to twelve months, on average.
End of highlights for June 14th chat.