Making Decisions
Chat Highlights
April 13, 2005

On Wednesday, April 13, 2005, the glaucoma chat group discussed "Making Decisions."

Moderator:   No doctor will be with us tonight. We will be discussing "Making Decisions."

Nor:  When it comes to glaucoma, the decisions can be difficult to make.

DM:  It is nice to check in with others who have dealt with glaucoma. It's really not easy for everyone to understand, is it?

Mar:  This is a great site to connect with others who have glaucoma.  It has helped me more than I can say.  Sometimes our decisions are made for us, but it's a big topic. In January 2003 I was told to have trabeculectomies in both eyes. I found another doctor.

Pa:  Yes, you can either quit or go to another doc, but it doesn't seem quite possible to say, "No thanks, not now."

Mar:  Yes you can. I was told I needed the trabs (trabeculectomies) and I found another doctor. I needed trabs, but put off the surgery for two years, using medications.

Pa:  Tell us more.

Mar:  JG played a large part in my decision about treatment.  JG was one of the few who answered my post on the Bionic Eye message board asking for information from patients who had had trabeculectomies.  JG told me of his experience and it helped me a lot.  So did the support of all the chatters here. Everything went well. So well!

Nor:  What if you had serious complications, like hypotony? Would it help to share that with someone facing a trabeculectomy?

Moderator:  Most of us here know first hand that having glaucoma means we will have to face some decisions over the course of our lifetime because of our glaucoma.  Some will be difficult to make, some we might regret, some will be easy to make.  Does anyone have any advice for people who are faced with the decision to intervene surgically?

Mar:  If in doubt, get another opinion.

Moderator:  I had recent surgery, and in my case it was considered urgent, so the decision was not as hard to make.

Pe:  If the doctor is a glaucoma specialist, I would take the doctor seriously. If he isn't, then go to a glaucoma specialist.

Nor:  Yes. Find out why the surgery is necessary, what the risks are, what the alternatives are, how long the beneficial effects of the surgery will last.  That's just for starters.

Moderator:  So educate yourself when having to make such a decision.

Mar: I just get more consultations, but only when the prognosis is not what I want to hear.  In my case, it became obvious that there was no course other than surgery, because of my reaction to the eye drops. I postponed having the surgery because of fear.

Pe:  Not educating yourself is a decision, too. A bad one.

Nor:  What would you do if three doctors had different opinions.  Get a fourth?

Mari:  I have not had that happen yet; they all pretty much agree.

Moderator:  I went for four or maybe five opinions when first told I needed eyedrops.  I wanted just one person to tell me the others were wrong.  Making decisions has gotten easier for me over time.

Pe:  Has it become easier because you are more informed now?

Viv:  I definitely think so.

Mari:  If the suggestion does not involve an intrusive procedure and my research supports it, then I'll go along with it.  But if it means cutting into my eye, considering its condition, I will consult more doctors.

Mar: I have to admit that fear made me put off surgery.  So many chatters on this site seemed to think surgery was the last resort.  I think we can all agree that fear is a big player in this decision-making process

Pa: I wish there was more information on progression.  It's clearly not linear in some of the graphs of visual field scores that are published, at least not always.  They have the data, and the techniques are now available to look at this, but I haven't seen anyone doing it.  If the rate of progression is really slow for my category (normal-tension glaucoma) then, as Dr. Spaeth says, the decision isn't so clear cut.  Also, it's not really clear to me from my reading that cutting surgery helps preserve functioning vision all that well.  Luckily, the functioning vision seems to be much better than the visual field tests would indicate. And the rate of progression is years, at least in the early stages.

Nor:  The rate of progression can depend on, for one thing, the type of glaucoma.  For example, angle-closure glaucoma is an emergency.  Normal-tension glaucoma usually is slow to progress.

Moderator:   Is it wise to listen to our gut feelings?

Mari: I'm a big gut-feeling person.

Pa:  Sometimes some close friend's advice makes me realize it's very much what I do NOT want to do. That gut reaction helps me realize what I do want to do.

Ba:  Well, a few things have helped me make decisions.  First, I decided to be truly involved in my treatment, to learn as much as I could, or as much as seemed appropriate for me to be able to assent to anything.  The second thing that has helped is a lot of searching the Internet for information from many different kinds of reliable sources.

Pe:  What prompts a patient to go for a second or third opinion?  I haven't had to do so (yet) and I'm wondering.

Moderator:  In my case it was fear. I was terrified of using drops, and possibly having laser sugery down the road.  After I research something that raises red flags in my mind, I want a second, third, even fourth opinion.

BP:  Sometimes you have to read the research papers over and over again to catch a point that will apply to your particular case.

Mar:  I have found that all the outside information helps, but there is nothing better than finding a specialist with whom you feel a partnership in making the treatment decision.

Mari:  For me, it was the possibility that the surgery may result in blindness.  The third opinion was to redo a laser surgery that was initially done incorrectly.  The problem may resolve. If not, I'll be right where I am now.

Moderator:  But what if refusing surgery could lead to blindness?

Pe:  Fear made me compliant.

Moderator:  After years of using eyedrops, some days I find it hard to use them.  I need to remind myself that the drops are helping me.

BP:  I was compliant because I was willing to do the best I could, insofar as I understood my situation.  When my information and understanding changed, the use of medication changed -- when my doctor came to the same understanding.

Pa:  As to eye-drop compliance, if I say I'm going to do something, I do it.  I decided to try eyedrops to see if they lowered my pressures (how much and for how long) and to see if my rate of progression slowed.

Mar:  I also think that maybe getting second and third opinion is part of a search for a doctor that we feel comfortable with and can talk to easily.

Moderator:  I feel lucky to have so many doctors on my team.  I feel so close to all of them -- even the retina doctor who I have only seen three times.

Nor:  I wouldn't care if the glaucoma doc had the personality of a fish if he were tops in his field.

Pe:  You're talking about my glaucoma specialist:  Dr. Fish.

Moderator:  How do you cope with having made a decision that turned out to be wrong?  Things didn't go as planned?

Mar: I cope by signing on to this chat, and talking about it.

Moderator:  That helps me, too.

DM:  Getting information from people who have "been there" really helps.

Fi:  How can one cope with different vision in each eye that can't be corrected?  I think it even affects one's thinking, let alone one's vision.

Pa:  Coping with things going wrong is really the core of decision-making, isn't it?  You've got to take responsibility.

Moderator:  True. We are the CEOs of our healthcare.  Doctors can suggest and we can educate ourselves, but we are the ones signing on the dotted line and must live with it.

DM:  But doctors can't let patients dictate what kind of treatment they receive.

Ma:  If things go wrong, cry a little, then go on.  It's scary stuff.

Pe:  My bad decision was not to take responsibility for myself, and I stayed too long with the general ophthalmologist.  I've learned so much from this group.  Just wish I had found you all sooner.

JG: I definitely didn't go with the gut feeling.  I would have liked to have the cataract on my left eye removed, but the other doctor did not recommend wearing a contact lens on my left eye, because of the filtering bleb created by the trabeculectomy.

Nor:  Can you elaborate on that?

JG: I'm acutely myopic, and there's a big difference in the vision of my two eyes.  I would need to wear a soft contact lens in the left eye.  For example, if I held my glasses away and looked through them, a person would look large to the left eye, but small to the right eye.  The brain wouldn't know how to compensate for the double vision.

BP: I tend to look at this experience as a series of issues, or puzzles, and with every puzzle you may have a number of pieces to locate and assemble before you can feel comfortable about a decision.  I don't mean you ever feel certain about the decisions, but more or less comfortable -- until something happens.  Another puzzle, more work, figure out the next step. In my case, it has been complex.

Nor:  Some patients learn a little, think they know more than they do, and try to tell their doctors what should be done. Big mistake.

DM:  Some patients are easily swayed by advice and end up making the wrong choices.

Kat:  I think everyone has decisions to make; you live with them and do a lot of adjusting.  You learn from your mistakes, use the mistakes as a lesson, and then MOVE ON.

Moderator:  Good attitude!  Move on.  Life is too short.

Pe:  It's good to learn from our mistakes.

Ka:  Everyone has problems.  It's all in the way you deal with them.

DM:  How about relying on mother's instinct?

BPS:  You have to have some facts to go on.

DM: Our decisions will affect our daughter for the rest of her life.  That's a heavy burden.

Fi:  How do we know if using eyedrops really is helping? Some people's eyes get worse, some don't. It doesn't always necessarily follow that no treatment makes one's eyes worse.

Pe: We don't know.  That's why we need to find the best doctor and have confidence that he's doing the right thing.

Moderator:  Your doctor will check your progress by examining your optic nerve and your visual fields.

DM: My husband opposed my decision to switch doctors, but he wants to switch because he can't stand the tension!  We do tend to support each other well though.

Fi:  How do I know that my eyes (which are bad) would perhaps not have progressed to this point if I had not started using eyedrops?  Twenty-five years ago my intraocular pressure was up one time, then not again for 30 years.  Dr. Spaeth is my hero. He tells it as it is. If any of you weren't here when he came here, I suggest you read the highlights of that chat. (January 12, 2005)

Moderator:  Some decisions will be difficult to make; some will be easy to make; some we might regret.

Ka:  Making the decisions is not hard.  Living with them is.

Ba: I'd like to add that it's been helpful to me to be able to directly pose questions here to the doctors associated with Wills.  They are, after all, a truly captive audience during these chats, and it's worthwhile taking advantage of that.

ff:  What I would like most from my doc is a friendly smile and less attention to recording measurements, more relating to me as a human being.

DM:  I was very much influenced by a Wills doctor in this chat room, and that is what made me question my daughter's treatment.  I thought what he said made a lot of sense and he backed it up with facts.

Ba:  I ,too, got a piece of information from one of the chats that became a pivotal point in changing my treatment.  So, as I said, it's been worthwhile to participate here.

Note:  After the chat, a message came in from one of the participants to say that concern about finances played a part in her anxiety about having surgery.  She said, "Since we are uninsured, we had to pay cash at the surgery center before they would even put me on the schedule."

On April 20, Dr. Wilson discussed "Indications for Combined Glaucoma and Cataract Surgery" in the Chat room. Click here for highlights of that meeting.

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