Open Chat
Chat Highlights
March 24, 2004

Norma Devine, Editor

On Wednesday, March 24, 2004 the glaucoma chat group met and had an open chat.

Moderator:  As usual, the chat tonight will be moderated, but there will be no specific topic discussed and no doctor will be present.  Let's start by discussing how glaucoma has affected our lives. 

P1:  Okay.  My glaucoma was diagnosed in 1999.  I had a trab (trabeculectomy) in 2002, and my vision is now stable.  Having ICE (iridocorneal endothelial syndrome) has affected my cornea.  So I guess the vision problems I have, such as halos at night, have affected my life the most.  

P2:  My life has been affected by needing to use glaucoma eye drops and knowing I will have glaucoma as long as I live.  But I'm not as uptight about it as I used to be.  Life is too short for that.  No cure?   Well, it could be worse; it could be fatal.  

P3:  Realizing that this is a life-long condition and I have to deal with it forever was a biggie.  I'm not used to thinking of myself as a patient.

P4:  I've learned to appreciate everything that I see and do even more.

P5:  I had heard that glaucoma ran in our family, but I never dreamed it would include me.  I never liked to take medications.

P6:  When I learned I had glaucoma, I didn't believe it.  That was so long ago I sometimes forget I have glaucoma. 

P7:  Doesn't the need take glaucoma meds serve as a constant reminder that you have glaucoma?

P6:  Yes, that's true.  Too many meds and they are a constant reminder.  Maybe I don't want to think I have glaucoma.  If it wasn't for iritis, I think I would be fine.  Iritis causes my glaucoma to go haywire.  

P3:  For the past four years, I've had secondary glaucoma in one eye, which suffered trauma 32 years ago.  The eye has mild damage, the vision is stable, and I have not needed to take medications to control my intraocular pressure since I had cataract surgery the latter part of 2003. 

P4:  Thirteen years ago, I was a glaucoma suspect.  Then I was diagnosed as having malignant glaucoma.  The vision in my right eye has been stable for four years, and the IOP in the left eye is 8 mm Hg.

P8:  Since I was diagnosed with glaucoma two years ago, the biggest effect for me has been having to accept that, despite the early diagnosis, glaucoma will be a life-long battle for stability of my vision, as well as the eye-drop regimen and side effects.

P2:  After a trab, I was so scared I did not touch my eye for six months.  I even used the plastic eye patch at night during that time, even though my doctor said I did not need to do that. 

P9:  My glaucoma was diagnosed in 1996.  In 2000 I had a trab in my left eye.  I suffered a 40 to 50% loss of vision in that eye, which is now stable.  The vision in my right eye is being watched. 

P10:  I, too, am concerned with how long my sight will last. 

P11:  I don't take being stable for granted.  I think we should always be on watch.  

P8:  I learned that recently.

P2:  I know I should not take it for granted and I do not.  I go for my exams and do not ever forget when I am due for a follow-up exam.  I guess the uncertainty would be the most difficult thing. But for the most part, I am stable and happy.  But there are always thoughts about when my trabs will fail, what if the drops stop working, and so on.  

P13:  Six years ago I was diagnosed with pigment dispersion syndrome (PSD) in the right eye.  Two years ago I learned I had pigmentary glaucoma in the left eye.  SWAP (Short Wavelength Automated Perimetry) showed a focal defect in the left eye; the right eye was normal.  All this is against the backdrop of high myopia in both eyes, and related peripheral retinal degeneration (that is, lattice degeneration), and posterior vitreous separation in the left eye.  

P7:  That's a lot to cope with!

P4:  In 1997 I was diagnosed with plateau-iris syndrome (a type of angle-closure glaucoma).  I'm still doing okay.  

Moderator:  So for most of us, the biggest effect seems to be coming to grips with the life-long nature of having to deal with glaucoma. 

P1:  Yes, I agree.  

P2:  So do I.   

P8:  Me, too.  

P9:  I really learned a lot from this chat room, after I was referred to a doctor at Wills in 2000.  I find it difficult not to know how long my vision will remain as it is and I wonder what lies ahead for me.  

Moderator:  So uncertainty about the future is a big concern for you?  

P9:  Yes, even though I am not young.  

P4:  Ditto for me! 

P10:  I am greatly impressed by how knowledgeable patients in this chat room are.

P9:  I agree!

P7:  We learn from the Wills' eye specialists as well as from one another.  

P1:  I hesitated to enter the chat room at first because I thought I didn't have "real" glaucoma. The most important thing I've learned here is how many different kinds of glaucoma there are. This is the best place to learn about coping with glaucoma.  

Moderator:  Is it difficult for some of you to be compliant about taking your medications?    

P9:  I have a neat little timer that is set for my three drops and the 10-minute intervals between them. That has made compliance much easier as I don't have to count, and so on.   

P4:  In 1997 I was diagnosed with plateau-iris syndrome (a type of angle-closure glaucoma).  I'm still doing okay.   I hate it and I know I should not, but I just do.  I have a drop sitting right beside me as a reminder to use it -- again.   It never ends.  I wonder, when I am old and gray, will I be able to afford all these eye drops?  

P8:  I don't find it difficult to use the glaucoma drops as prescribed.  I do find it difficult to deal with relatives who do not take their vision seriously enough to get checked for glaucoma every few years.

P12:  One of the most difficult things for me is not being able to really tell what is happening inside my eye between visits. Then at the visits the docs don't usually have a lot of time to chat with the 60-some patients they see each day.

P15:  Losing sight is a real concern.  I have been on all kinds of glaucoma medications, and have had five laser surgeries and two trabeculectomies.  I fear that as time goes on, I will lose more vision.

P14:  I am very concerned about blindness.  I lost my right eye and am fighting to save my left eye.  I recently had a revision of a trab and I am scared. 

P7:  Your fear is natural and understandable.  I'm glad you can join us from Argentina.   

P7:  Do any of you have problems communicating with your eye doctor?  I do.  He often seems to view some of my questions as challenges to his authority and knowledge.  I know better than to greet him by waving papers full of information from reliable sources on the Internet.  However, when his treatments or techniques differ from those of highly respected specialists, I want to know why.  For instance, why, in 11 years, has he not taken stereo photos of my optic nerve?  

P2:  I have a great relationship with all my doctors.

P12:  My doctor was very compassionate on the first visit, but after that I felt like one of the numbers.  Communication seems to be very difficult.

P11:  Of all the glaucoma docs that I've had, I finally found one who is really nice.  I had 20 some years of eye disease before glaucoma.

Moderator:  My doctor has the amazing ability to never seem like he is in a hurry, even if he is.

P8:  I am happy with my glaucoma specialist.  He is the one all the other docs in the area refer to, but he is not very talkative. 

P15:  My doctor usually doesn't volunteer a lot of information.  I have to press him for information.  

P2:  I think doctors worry that too much information might be too much for patients to handle.  But I think they realize that patients today have the luxury of the Internet.  They can, and do, educate themselves.  So doctors should be prepared for the educated patient.

P13:  Doctors are not forthcoming enough with information. Almost everything known about pigmentary glaucoma -- for example, refraining from strenuous exercise to avoid pigment release, or about the various medications, or even the indications for medical treatment-- I found out by studying the literature.  Blind faith in your doctor is naive, at best; dangerous at worst.

P7:  Why do you think doctors might not be forthcoming enough with information?

P13:  A heavy workload, probably.  And it's just easier.  My doctor has it easy. His elderly clientele give him a free pass.  They make some small talk, get their prescriptions and some reassuring words, and they're happy to be out of the office as quickly and as painlessly as possible. Then along comes me -- or some other patients like you guys in this group -- who want a substantive discussion on some point, and, well, it seems like too much.

P12:  My doc isn't forthcoming, either.  I think fear of lawsuits and lack of time are two main reasons they are tight lipped.

P1:  I try not to miss a chat.  It's my glaucoma lifeline.  My busy doc doesn't have time for questions and answers.  So I get all my questions answered here by the Wills' eye docs.  I feel that they are as important to me as my own glaucoma specialist.  

P10:  I had a great doc at John Hopkins, but it turned out that he was an ophthalmologist and not a glaucoma specialist.  He finally sent me to a glaucoma specialist closer to my home.

P15:  The doctors are seeing so many patients they do not have a lot of time just to sit and chat.

P7:  Ten minutes with a patient doesn't give much time for chit-chat. 

P8:  After two years of coming to this chat room, I am better able to understand the language when the doc is rattling off information about my condition to the nurse or technician.

P9:  Right now, most of my visits are part of the memantine study at Wills, and briefly with the doctor.  He does answer questions I pose and he is a caring doctor.  It seems that I will continue under his care when the study finishes.  I hope I will be given time when needed.  

P12:  Many doctors probably think it would difficult for patients to understand technical, medical stuff. 

P7:  It's easy for patients to misunderstand what their doctors say.  

P15:  That is true.

P12:  I think that depends upon the doctor and the subject matter.

P4:  My doctor usually spends half-an-hour with me, but gonioscopy (to look at narrow angles) may take a little more time.

P14:  I think the majority of doctors treat us as numbers and are not very much concerned about our suffering.

P7:  If you were a glaucoma doctor, you would be dealing with one of the most challenging diseases. The docs are well aware of the terrible fear of going blind.  Like us, they find it frustrating that there is no cure.

Moderator:  Good point.  I remember some of the docs in the chat room commenting on how heartbreaking it is for them when nothing seems to work for the patients.  The docs spend some sleepless nights.  

P7:  Yes, one night Dr. Werner said he "hated" glaucoma.  It's easy to see why.      

P3:  How many find the cost of medications burdensome?

P11:  Azopt is a price zinger.

P12:  Meds in the U.S. are ridiculously expensive.

P2:  I spend over $100 a month on prescription drugs, and that is with an insurance plan for which I pay $245 a month.  Mom used to cut her meds because of the costs.  

P8:  Cost of the medications is not a problem for me.  With my health insurance, the co-payment is $25.  Now that I've switched from Xalatan to Lumigan, the drops cost me less.  

P7:  My insurance company switched me from Xalatan to Lumigan.

P8:  I would fight any insurance company that did not go by the doc's prescription.

P7:  So would I, if the change adversely affected my intraocular pressure or caused more side effects. But that didn't happen. 

P9:  The cost is less for me now that I need the drops in only one eye after my trab.  And my co-payment is only $13, so it could be worse.  

P12:  I've had some meds that cost $90 for 5 ml.  

P13:  If you want to be cynical, the high cost derives from the fact that the drug companies have you over a barrel:  Do you want to pay the price or go blind?  If you don't want to be cynical, there's some justification for the drug companies wanting to recoup the cost of years of development of the drugs, many of which may never make it to market.  

P5:  Travatan was less expensive in Israel than in Canada.

P14:  I saw that drugs are expensive in  the U.S.  Here in Argentina, they are cheaper. One little bottle or Alphagan or Lumigan costs $15 U.S.  

P13:  Glaucoma treatment will get even more interesting if neuroprotection ever moves from the research to the clinical setting.

P7:  Yes, and don't forget neuroprotection and stem cell research.

Moderator:  Do you tell friends, co-workers, or employers that you have glaucoma?

P11:  I once had a boss tell me to take my meds in a stall in the restroom, not at my desk.  

P13:  I tell everybody I have glaucoma.   As bad as it is to have the disease, it's also a very interesting disease.

P14:  I can tell them I have glaucoma, but I but don't say how little I  can see.

P1:  They know about my trabeculectomy.  

Moderator:  How good are family and friends about providing support?  

P12:  I don't tell many folks about my glaucoma.  I don't have co-workers and I don't think its appropriate conversation with my clients.  My family is quite supportive.

P2:  When I was first diagnosed, my parents drove 600 miles to take me to Wills in the hope that the other docs were wrong.  They weren't.  My parents were sad, but over time I have come to terms with my eyes.

P1:  My husband goes with me to office visits and writes everything down.  I'm afraid of forgetting what the doc says (the little he does say).

P5:  My family was sure I didn't have glaucoma, that it was only a temporary condition.  It was hard for them to accept that I had glaucoma.  

P8:  My close family is very supportive.  But one aunt does not have a clue, and asks if contact lenses gave me glaucoma. 

P7:  Except for my husband and my doctor, I don't discuss my glaucoma, except with patients I've met in here and on the Bionic Eye message board.

P9:  My family, friends, and church family know.

P3:  I think it's hard sometimes for people to understand, because it's invisible to them, and they don't realize that we are actually losing sight.  And they think it will go away after a while!

P7:  My four children know I have glaucoma and get their eyes checked.

P11:  Everybody knows I have glaucoma.  When you take nine drops a day, they would know eventually even if I didn't tell them. 

P7:  Yours is a complicated case -- uveitis, for example.

P16:  I now feel more comfortable telling people in the West Indies about my son's glaucoma.  Some people ask if he's getting better.

P8:  Most of my friends have misconceptions and are not sure of what glaucoma is.  They think only old people get it.

P12:  I don't like many folks knowing, because I don't want it to define me and I don't enjoy it being brought up unexpectedly when someone wants to make conversation.  It's too personal.

Moderator:  I find that some people like to give unsolicited advice:  "This will cure you." "Are you sure you're drinking enough water?" etc. 

P15:  I think glaucoma is a rather personal matter.  

P9:  I am one of seven children.  Four of my siblings are on glaucoma medication, two are older and two are younger than I. So far, I am the only one who has developed glaucoma.  I just assumed I would be the same, that drops would work and I would be okay.

P1:  When I returned to work after my trab, I was amazed at how many people thought all eye surgery was the same.  Many assumed it was something like Lasik.

P9:  This was a great chat for me.  Thanks, everyone.

P15:  Yes, a great chat tonight.

P9:  I, too, thought it was very helpful.

P7:  How would y you feel about having a chat like this every couple of months?

P1:  I'd like that. 

P11:  Sounds good to me. 

P8:  I would like that.

P15:  Sounds great.

P5:  Sounds good! 

P2:  I liked it.

P12:  I think this sort of chat with a doctor present would also be helpful.  Its nice to hear both sides.  Once a Wills doctor just shared his thoughts and feelings along with us.  Kind of bridged the whole experience.

End of highlights for March 24, 2004.

On March 31, Dr. Werner discussed "The Aging Eye and Glaucoma" in the Chat room. Click here for highlights of that meeting.

Click here for the most recent glaucoma chat highlights and links to the chat archives.

Click here for upcoming glaucoma chat events.