Chat Highlights
Conquering the Fear of Glaucoma
September 13, 2000

Norma Devine, Editor

On Wednesday, September 13, 2000, Dr. Rick Wilson, a glaucoma specialist at Wills, and the glaucoma chat group discussed "Conquering the Fear of Glaucoma." 

Moderator:  Welcome, Dr. Rick.  The topic tonight is Conquering Our Fear of  Glaucoma.  What fears do we have?  

P:  Going blind, of course.

Moderator:  Going blind is probably the biggest fear, but not the only one, I am sure.

P:    Going blind.  Losing independence.  Becoming a burden.

P:    I think we all fear going blind.  

P:    Loss of independence.

Dr. Wilson:  Independence is the underlying possession most of my patients fear most to lose.

P:     I also fear ignorance.  We fear things in proportion to our ignorance

.

P:    I don't know about that.  I thought that at first, and began learning as much as I could about this disease.  But now I almost think I was better off not knowing so much.

P:    I think we sometimes fear things in inverse proportion to our ignorance. 

P:    Yes, I think I know too much now.  Probably lots of misunderstanding.  But it's often bleak and upsetting, especially for people who are losing the battle against this disease.

P:    I fear loss of control.

Moderator:  I fear not being able to drive, not being able to work.

P:    I worry that if this disease progresses too far I'll not be able to drive and hold a job outside the home.

P:    I'm hoping the doctor can tell us ways to control these fears.

P:    I worry that my doctors seem to be running out of options.

Moderator:  For some of  us, it might mean losing our independence early in life.   

P:    I fear I will some day lose all I have gained back of my sight. 

Dr. Wilson:  Too much knowledge complicates things.  I told that to my parents.  I, myself, don't do a lot of research about what might be wrong or what side effects the medications would have that I might need to take.  I have my parents pick the best doctor they can find and abide by his or her instructions, asking enough questions to understand what their choices are and helping the doctor decide their therapy for them.

P:    That's good advice. I keep thinking I'm supposed to read every horrifying thing about a drug.  Plus, virtually all of the articles on this web site deal with the dangerous implications of drugs and therapy.

P:     It's hard for a patient not to read the insert that unfolds forever, and tells you that you might drop dead taking this medication.

Dr. Wilson:  Yes, it is hard. But you must realize that in the medical world, crawling with malpractice and injury lawyers, the insert that talks about everything that has ever happened to a patient taking the medicine in question, even if it wasn't proven to be from the medication, is put in the package  to protect the maker of the medicine, not for your edification.  When I found my parents reading those inserts,  I bought them the AMA (American Medical Association) book on medications and their interactions, which is  reality based.

P:    You know, it's not even so much dropping dead as it is losing your quality of life while you're battling to keep your vision.

P:     It's especially hard when you're taking multiple medications.  For example, I'm taking an anti-depressant and an anti-anxiety medication,  in addition to two glaucoma medications.  So I naturally worry about how they are all mixing together and affecting me.

Moderator:  Doctor Rick, have you had many patients go blind in your years as a glaucoma specialist?  I thought you said there were only a couple.  Am I right?

Dr. Wilson:  As I mentioned many times before in this chat room, most of the vision lost to glaucoma is lost before the patient sees the doctor and the glaucoma is discovered.  Ophthalmology is at a stage now that very few patients will lose their vision.  The only patients that I can easily think of that have lost most of their vision under my care had hemorrhages between the layers of the eye when the eye pressure was low after surgery, and two patients had infections, one after surgery and one years later through a thin bleb.

P:    I think we're talking about two different things -- knowledge about the disease, its process and possible progression, and possible side effects of medications, some of which occur only rarely.

P:    That was going to be one of my questions.  Can anti-depressants raise intraocular pressure?  

Dr. Wilson:  Some anti-depressants may cause pupil dilation and should not be used in those with a narrow angle. Most patients with a narrow angle, however, do not know they have one.  If they have been diagnosed, then they have been treated and warned about the medications. 

P:    So open-angle glaucoma is not threatened by the use of anti-depressants?

Dr. Wilson:  No, it is not.

P:     Sometimes I think this chat room scares people who are newly diagnosed.  Most of  us have been through the mill with surgeries, etc.  Anyone with minimal damage and just getting acquainted with the disease may find us rather frightening

P:    Yes, you are right.  So much so that some have not returned.  That's unfortunate.

Moderator:  It's tough for me because I am one of  the those with many surgeries.  But someone newly diagnosed must be informed, as tough as it may be to take.

P:     Actually, this room comforts me, rather than makes things worse.  What makes things worse for me is waking up at 3 a.m. every night and thinking about things like this and where it will end.

P:     A lot of us seem to be the "hard cases."  The numbers say that only a small percent ever need surgery, but most of us have had at least one trab! And some have had complications (which is even more statistically unlikely). So we don't really present a good sampling of glaucoma patients.

P:    This room can be very scary when you hear from people who are suddenly worse off once

treatment starts: blurred vision, headaches, fatigue, etc.  For newly diagnosed patients, it's like standing on the edge of the abyss and thinking, "I will have to battle for my sight for the rest of my life."

P:     I think the fact that some of us have been fighting for many years and still have sight should be heartening

P:    I thought I was the only one who woke up in the middle of the night and worried. 

P:    The middle of the night is dark, as it would be if I was blind.  So I think the darkness leads me immediately to dark thinking patterns and fear.

Moderator:     If I had been better informed, I probably would not have rushed into having laser surgery, without giving it a second thought.

P:     I know I would not have had my multiple surgeries.

P:    I look at it this way:  Use this time to see and do all the things you want to, just in case.  Probably you will end up having a fuller life in the end!

P:     Dr. Wilson, reading is my big passion, but I don't like books on tape, so I read large print books.  However, my eyes get really sore.  

Dr. Wilson:   I wasn't wild about books on tape till I heard "Angela's Ashes" read by the author. Terrific.

P:     Great book, Doctor, but I need to see the printed word for as long as possible. 

P:    I wake up at 4:00 a.m. to watch the sunrise now.  I  never did that before.  It might be my last chance.  

P:    Having a positive outlook is everything.

P:     I'm starting to adopt a new attitude:  That within 10 years there will be a medical cure for glaucoma so I won't have to worry about going blind.

Dr. Wilson:  No,  no evidence of that.

P:    Dr. Wilson, I am not sure I am  as optimistic as some.  But can you tell us about drugs that are more gentle, more effective and surgical procedures that are safer?  What can we see in this direction in the next decade?  I've read all of the research that's on the Wills' site and on Gleams, but it's all pretty much in the future.    

Dr. Wilson:   There is a new medicine coming from Allergan that could beat everything out there now.  Alcon is also introducing a more effective but equally safe Betoptic soon.  The new drug is touted as being better than Xalatan, the most powerful glaucoma drug we have, but also more benign to the eye.

P:     Unless I'm deep into sleep (which anti-depressants can help you to achieve), I find that I need to get up and go downstairs and turn on the light to read to help reduce my fears

P:    Is it really possible to "conquer" the fear of glaucoma?

P:    Two weeks before I was told I had glaucoma, a CT Scan detected a small nodule on my lung.  I go in for re-scans to see if there is growth.  Am I terrified?  Yes, of dying of cancer and going blind.  These two things hit me at the same time, and I'm seeing a psychiatrist and being treated for glaucoma.

Dr. Wilson:  Those are serious concerns, but both may continue to be only a nuisance and concern, and  not life- or sight- threatening.

P:     True, clinically, Dr. Wilson.  But we're talking about fear, and the fear of death and the fear of blindness are very powerful and frightening. 

Dr. Wilson:  Absolutely.  

P:     To quote FDR, "The only thing we have to fear is fear itself."  To me, fear is the enemy.

Moderator:  I just put my fear on the back burner and go on with my life.  I have a check-up next week.  So probably next Thursday morning I will start to get scared.  If it is a good check-up I will go on.  If it's bad, I will need you guys.

P:  You just have to keep busy, so you don't have much time to think about the glaucoma.

Moderator:    The only thing is those eye drops.  Kind of tough to forget about glaucoma when we are constantly  reminded.  But as long as the drops prevent damage and I keep my vision,  then I can deal with the constant reminder of the drops. 

P:     I think I fear medications more than the glaucoma itself.

P:    New drugs and treatments are what keep me going and may be one of the best antidotes to fear. 

Moderator:  Doctor, judging from what you have said before, the odds are in our favor that we will not go blind from our glaucoma, true?

Dr. Wilson:  That's true.  

P:    My family tends to have a much lower life expectancy than normal, at least for the men.  The women seem to live forever.  I've actually sort of counted on it as a means of keeping my sight for my whole life!  That isn't as negative as it sounds, but it's hard to explain. 

Dr. Wilson:  That's understandable, but pessimistic.  

P:     Doctor, would you say that the patients you've seen who do the best were those who were the most positive thinking and optimistic?

Dr. Wilson:  Yes, and the most energetic and least sedentary.  Sedentary people have sedentary circulations, meaning less blood to their optic nerves.

End of highlights for September 13th chat.

On September 20th, Dr. Rick Wilson discussed "Glaucoma Medications" in the Chat room. Click here for highlights of that meeting.

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