Coping With Glaucoma
Chat Highlights
December 18, 2002

Norma Devine, Editor

On Wednesday, December 18, 2002, Dr. Werner, a glaucoma specialist at Wills, and the glaucoma chat group discussed "Coping With Glaucoma."

Moderator:  Welcome back, Dr. Werner.  Our topic tonight is "Coping With Glaucoma."  What aspect of having glaucoma do patients find most difficult?

Dr. Elliot Werner:  A recent study evaluated the symptoms and complaints of patients with glaucoma.  A small proportion of the patients actually had complaints related to their vision, such as problems driving at night.  The most common complaint was fear of going blind.  The other common complaints were stress and depression about their diagnosis.  It appears that glaucoma patients suffer more from psychological, rather than physical, problems.

P:  I was warned to watch my teenage son for signs of depression caused by eyedrops.  That's hard to judge with a teenager.  

Dr. Elliot Werner:  Depression is a side effect of beta blockers, such as timolol.  A change in behavior or mood is important to observe in a teenager.

Moderator:  Do you ever prescribe anti- anxiety medications?

Dr. Elliot Werner:  I do not prescribe such drugs myself.  That's outside my area of expertise.  The risk to me and the patient would not be acceptable.

Moderator:  Do you ever advise patients to see a psychologist?

Dr. Elliot Werner:  Yes, if I perceive the patient's fear or depression are beyond what I would regard as appropriate in the circumstances.

P:  My biggest fear is going blind.

P:  I suspect there is a lot of denial going on with high IOP's (intraocular pressures) for those undiagnosed with glaucoma.

P:  There seems to be so much to learn, and not too many happy answers.

P:  I am afraid my drops will stop working.

Moderator:  How does a glaucoma patient deal with all these fears? 

Dr. Elliot Werner:  I'm not sure.  Some certainly cope better than others.  It is, I find, important to have some sort of support mechanism in your personal life, such as family or church. 

Moderator:  The chat room has been there for me.

P:  The chat room saved me, for sure, from being a lonely patient.

P:  The chat room has been my life ring  -- both the doctor chats on Wednesday nights and the other chats on Monday nights and Saturday mornings.  

P:  I practice Transcendental Meditation twice a day to reduce stress.  

Moderator:  I love to stop and enjoy the view.

P:  If you don't learn to cope with your glaucoma, it can get the best of you. 

P:  This site has helped a lot of us cope with our glaucoma.

P:  I don't tell anyone except my family.  That way I avoid questions and speculation from other people. 

P:  People often say things that are frightening to hear, such as, "I know someone who had glaucoma and went blind."  Then they look at you differently, and you feel very separate and alone with the problem.  I am thankful to Wills and the doctors who give us their time.

Dr. Elliot Werner:  I don't know why people do that.  It is very common and must reflect some anxiety on the part of the other person in dealing with someone who is different from them in some way.

Moderator:  I think people look at your differently.  With me, I think they wonder just exactly what I do see.  

P:  Making the effort to become informed about glaucoma has helped me.  I also advocate for myself with my doctor and ask questions -- respectfully, of course.  He likes that, too.

P:  I wonder how my doctor feels about my knowing so much about aniridia.  Is it annoying when a patient questions you?  (Editor's note:  Aniridia is a rare genetic disorder that causes the eye to stop developing too soon.  The incidence of glaucoma in aniridia patients is unclear.  Reports have quoted anything between 6 and 75%.)

Dr. Elliot Werner:  I, personally, am never annoyed by patients' questions or by patients knowing a lot about their condition.  Sometimes a patient with a rare condition will know more about it than I do.  That is annoying, because I should know more.

P:  Those with infants with glaucoma really go through the worst.  My heart goes out to you.

P:  I can tell you that infants can be very treatable, if you have an experienced surgeon who works on a lot of them!

P:  Eyedrops, pills, surgery!  Why is nothing working for me?  Gosh, I am only 48 years old. 

Dr. Elliot Werner:  I can't answer you specifically without knowing more about you.  But, in general, glaucoma is like any other serious chronic disease.  Treatment is not 100% effective.  There are some patients who do not respond. 

P:  I think some of us who have been on many glaucoma medications for many years worry about that being a good idea, long term.  

Dr. Elliot Werner:  Whether or not using medications long-term is a good idea depends on the relative risk of the medications versus the risk of blindness

P:  With all the history doctors want when you're diagnosed, I wish there were more statistics on predicting the odds of my children and grandchildren getting glaucoma. 

Dr. Elliot Werner:  For primary open-angle glaucoma (POAG), a strong family history increases the risk about twice, so that instead of the usual two percent, it would be four percent, unless there is a clear, genetic, familial pattern.

P:  I've found that learning as much as I can about my condition has taken away some of the fear.  

Moderator:  What are your thoughts about educating patients?

Dr. Elliot Werner:  Patient education is key.  The problem is that most doctors are so pressured for time and have such a volume of patients that educating patients is difficult.  We need more resources like this web site to help people understand their disease.

P:  It's understandable, but it's too bad doctors are so pressed for time that it's difficult for them to educate their patients.  It seems like a "Catch 22," because the more educated the patients can become, the less time they then take during an appointment with the doctor.  

Dr. Elliot Werner:  It is important for doctors to point their patients to sources of information.

P:  I highly recommend reading Coping with Glaucoma by Edith Marks.  The paperback edition costs about $14.  

Dr. Elliot Werner:  Right.  That's a good book.

Moderator:  Doctor Werner, before you leave, do you have any other suggestions to help patients cope with glaucoma?

Dr. Elliot Werner:  I don't have any magic formulas.  I have been impressed by the tremendous variability of mankind and find it impossible to suggest anything that will work for everyone.

Moderator:  Thank you, Dr. Werner.  Happy holidays to you and your family.

Dr. Elliot Werner:  The same to all of you.  And may next year be a better one for you.

End of highlights for December 18, 2002.

On January 8, Dr. Henderer discussed "Healthy Lifestlye" in the Chat room. Click here for highlights of that meeting.

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