The Four Secrets to Good Health - Including Good Eye Health
Chat Highlights
November 30, 2005

On Wednesday, November 30, 2005, Dr. George Spaeth, a glaucoma specialist at Wills, and the glaucoma chat group discussed "The Four Secrets to Good Health - Including Good Eye Health"

Moderator:  Dr. Spaeth, the topic tonight concerns good health.  Would you like to start the discussion?

Dr. George Spaeth:  Yes. Health is something we all want. But about the only thing we can control that affects health is how we live.  Even so, few people do what is in their best interest.  We cannot affect our genes or even our environment very much. But we can affect, to some extent, how we live.

P:  I want to lead a healthier life, but how do I make that commitment and make it stick?

Dr. George Spaeth:  You make it by realizing that it is the most important thing you can do, and by remembering that you can do it.  For example, when you see your doctor, do you tell him what is really happening to you from the point of view of your energy, your sight, your concerns?

Moderator:  Okay. That sounds good.

Dr. George Spaeth:  I have tried to simplify this by concentrating on a few areas.  The first has to do with common sense and with listening to our body.  For example, we all know glaucoma is about intraocular pressure and optic discs and visual fields.  But glaucoma is not really about those things.  It is about how we feel and how we function.

Thus, the most important question the doctor can ask and the patient can answer is, "How are you?" I want to start by talking about the importance of symptoms in glaucoma.  Any questions?

P:  I thought there weren't any symptoms until glaucoma is advanced.

Dr. George Spaeth:  If you have no symptoms, by definition you are doing well.  In fact, you probably do not need any treatment. But as soon as you start treatments, you will get some symptoms. That answer may shock you, but I want you to think about it carefully.  What is the purpose of treating you? Only to prevent you from getting worse disability; if you already have disability, or to prevent you from getting disability.

Consider that nobody starts with symptoms.  Nobody starts with damage.  So you have to get a lot of damage before you get symptoms.  Our job as doctors is to determine where you are going to go.  Unless you are going to get worse rapidly enough that you eventually develop some disability, there is no justification for treatment.

P:  You're saying that the patient defines the symptoms.  I am a newly diagnosed glaucoma patient.  I don't know what symptoms to look for.

Dr. George Spaeth:  Symptoms are what you feel.  A symptom is pain, or trouble seeing in the dark, or scratchy eyes, etc.  The patient tells the doctor: "I hurt."  "I see less well." " I have more trouble reading," etc.  Those are symptoms.  Now my guess is that most of you here have symptoms already.  How many have symptoms because they can not see well, and how many from the treatments?

P:  I have side effects from the medications, but there are no alternatives at this point.

P:  My eyes feel very tired much of the time.  I thought that was from the several kinds of drops I use, more than from the normal-tension glaucoma itself.

Dr. George Spaeth:  What makes you think you have glaucoma?  Or, more to the point, what is glaucoma?

P:  I have lots of damage and the Alphagan eyedrops make me tired and affect my heart rate (48 beats per minute).

P:  I am 27-years old and was diagnosed with normal-tension glaucoma.  My intraocular pressures are 14 mm Hg in both eyes, my optic nerves are enlarged, and a visual field test showed some vision loss at the top of my vision field.  I've not noticed any loss of vision, but my doctor says the test shows I have lost vision.

Dr. George Spaeth:  If you are okay, we are starting to get somewhere.  What would happen to you if you were not treated?  Ask your doctor that question. If he can't answer, ask:  "Why are you treating me then?"

P:  I don't know what would happen if I'm not treated.  The doctors say they are trying to prevent damage.

Dr. George Spaeth:  Why do they want to prevent damage?  What they and you want to prevent is disability.  Damage and disability are different things.  If you already have damage, you will probably get worse, but will you get worse fast enough that it causes disability?  You and your visual field and your optic disc are different things.  It is you we should be treating, not your IOP or your disc or your visual field.

P:  I never had any symptoms, even when my intraocular pressures were 48 mm Hg.

Dr. George Spaeth:  When your IOP is 48 mm Hg, you are in great danger of getting a blocked vein (retinal vein occlusion).  Thus, treatment is necessary to prevent that.

P:  You are not suggesting that damage isn't important, are you?

Dr. George Spaeth:  Damage is really important; do not think I am saying it is not.  But if you do not have any damage, then why even consider treatment, when early damage does not make you worse?

P:  It is my understanding that by reducing the IOP, there is less likely to be vision loss.  Doesn't reducing the pressure reduce the rate at which the disease progresses?  If that is not the case, then why are we paying for drugs and dealing with their side effects?

Dr. George Spaeth:  You are right on target.  But 95% of those with elevated pressure will never develop any symptoms from glaucoma, even if they are never treated.

P:  I am confused and don't know what direction to take.  My doctor tells me I could lose vision if I don't use eyedrops, but you're saying that until I start getting damage, I should not use the medication to prevent it.

Dr. George Spaeth:  Is it worth treating 95% of people unnecessarily?  No!  What is needed is like a video, not a snapshot.  Rational treatment requires that the rate of change be known.  If you have one year to live and you have a 5% chance of your vision getting worse in 10 years, it does not make sense to treat you.

P:  But if you are one of the 5%, it would be your bad luck if you were not treated.  At what point would you begin treatment?  That is, how much damage would you have to see to start treatment?

Dr. George Spaeth:  If you have no symptoms and you are carefully followed, it becomes apparent whether you will be one of that 5%.  Then you start treatment.  But don't concentrate on the no-treatment side.  I am also talking about the not-enough-treatment side.  It is really essential to treat vigorously if a person is getting worse.

Moderator:  Dr. Spaeth, some of the chatters still seem to be confused about what you're saying.

Dr. George Spaeth:  What I am saying is highly unconventional.  I am saying it because what I want to get across is that the important thing to consider is how you feel and how you will feel.  Things like IOP are only signals, but they are indirect and are often misleading.  You need to ask your doctor about that.

But let's look at the other side.  Almost every day I see patients who tell me they are worse, but their doctors say they are fine, because their IOP is okay, or their field is okay.  If a person thinks he is getting worse, he is worse.  The point is that the patients' job is to get their symptoms across clearly to the doctor.  Only the patients know how they are feeling.

P:  Aren't your statements here at odds with those of your colleagues?  It seems to me that a lot of ophthalmologists are treating glaucoma suspects pre-emptively.

Dr. George Spaeth:  I am at odds with 90% of my colleagues.  Remember that doctors are terrified of letting anybody get worse on their watch.  So am I, but I do not want to make anybody worse unnecessarily.

This is all about lifestyle.  Listening to your self is point number one.  Believe in your own ability to determine how you are.  Nobody knows better than you.  But be honest!

P:  What is the second point?

Dr. George Spaeth:  Learning.  Over 50% of people who have glaucoma have no idea what glaucoma is.  Most know nothing.  Many think glaucoma is elevated pressure, which it is not.  Patients who learn whether they really need to be treated and why or why not, do better. Where can you learn?  Here is one place.  You can use other Internet sources, and, most importantly, patient support groups.

P:  It's my understanding from reading the literature that in the cascade of events leading to ganglion cell death, any damage to the optic nerve, early or otherwise, predisposes the nerve to further damage.  That is, a damaged nerve is susceptible to more damage.  Therefore, you would begin treatment at the first clear, objective signs of demonstrable damage (progressive cupping plus functional deficit) regardless of how the patient felt.

You seem to think otherwise.  I don't see how a patient's subjective feelings about his or her symptoms should supercede the established, objective clinical signposts that define this disease.

Dr. George Spaeth:  Consider this:  About 20 years ago, Dr. Y. Shiose* gave a population of normal people steroid eyedrops. One third of them got rising pressures.  He continued the eye drops until they developed cupping of the disk and then visual field loss.  Then he stopped the drops, the cupping went away, the field loss disappeared, and the pressures returned to normal. Ask your doctor about that study.

*[Editor's Note:  Shiose, Y. See: "5 Questions with George L. Spaeth , MD , FACS" http://www.glaucomatoday.com/pages/0504/09.html ]

P:  I have the best doctor, but he doesn't want, or have time for, lengthy discussions about how I feel.  He wants to know the answers to his questions.  He has an assistant record what she thinks is relevant.  I can try to repeat things, but get no response.

Dr. George Spaeth:  Being a doctor is really tough, because the time you have with the patient is so short.  But don't you leave the office until your questions are answered.  Every one of them.  That is your right as a patient.

P:  Rather than tell us what we don't know, why not tell us what glaucoma is?

Dr. George Spaeth:  What I am trying to say is that glaucoma is a dangerous word that means different things to different people.  It used to mean noninflammatory blindness.  Years ago, glaucoma meant IOP over 21 mm Hg.  Now it is defined as an optic neuropathy.  All of the definitions were right in the sense that they were what people thought at the time.  All of them were wrong, in that the definitions changed.  What does not change is what people feel.  If people feel well, they are in better condition than if they do not feel well.

P:  If you wait until you feel unwell, then maybe preventable damage has already occurred.  If you have a glaucoma suspect on watch, how often do you see that patient?

Dr. George Spaeth:  That depends upon the person and the finding.  Usually once a year.  Doctors should treat individuals.  Some people with high pressures get disability and some do not.  The challenge is to treat the ones who will, and not treat the ones who won't.  The level of pressure won't distinguish the first person from the second.  However, watching the person over time and developing a "video" will.  Is the person getting worse?  If so:  danger!

P:  Doctor, you are scaring me.

Dr. George Spaeth:  What I am saying is very scary.  I'm saying that you need to take responsibility for your health.  Your doctor is the junior partner, and you are the senior partner.  You all know that, which is why you are here.

P:  The problem is I'm not the one who spent all those years learning to be a glaucoma specialist!

[Note: At this point, Dr. Spaeth lost his Internet connection.]

P:  I don't know about anyone else, but what Dr. Spaeth is saying is giving me a knot in my stomach.  It is very scary!

P:  Don't you have to trust your doctor at some point?

P:  I'm impressed that Dr. Spaeth found time for us tonight.  He is always lively and exciting.

Monitor:  I'd like to suggest that all of you read the highlights of preceding chats with Dr. Spaeth.  He hits us with new ideas.

[Editor's note:  Dr. Spaeth tried, but could not re-establish his connection to the chat room.  Later, he generously gave of his time to write the following.]

What was my message?  No person can change his or her genes or the macro-environment in which he or she lives -- Iraq war, water pollution, air we breathe, and so forth.  What we can change is how we live; and how we live affects whether we are healthy or not.  People are most likely to be healthy when they:

1. Listen to themselves (an ability so developed in many aboriginal tribes that women can exercise birth control simply by how they live, becoming fertile or sterile at will, an ability so undeveloped in most of us that we can not even tell when we are sick).  The patients' major job is to listen to themselves and act on what they hear, including telling that to those who influence their health, such as their doctors.

2. Learn:  People who know what foods are likely to promote health and what foods are likely to damage health do better than those who do not.  People who know how to select a competent doctor do better than those who do not know how.  People (including doctors) who know that optic nerves in some people can be damaged by intraocular pressures (IOP) of 13 mm Hg and in other people not be damaged by IOPs 30 mm Hg know that just considering intraocular pressure is not going to protect the optic nerve.  Therefore, they will be skeptical of doctors or pharmaceutical companies that tell them that they do not need treatment because their IOP is 12 mm Hg, or do need treatment because their IOP is 30 mm Hg.

Knowledge is power.  But much of what people think they know or are taught is, unfortunately, wrong.  So, learning to doubt, learning to weigh evidence, learning what to believe and what not to believe is at the heart of the most important part of learning.  Our culture teaches us how to consider ourselves as victims, but it does not teach us how to be skeptical in a positive way.

Our culture teaches us to challenge authority figures, because it is cool to be a rebel.  It does not teach us that we need to challenge authority figures to help those people do their job better, so that they can help us relate to them more closely and be guided by them more beneficially.  Doctors need to hear from their patients when the patient is confused or thinks the doctor does not understand or is making an inappropriate recommendation.  It is a sign of huge trust, not of distrust or rebelliousness, when the patient says:  "Gee, Doctor, that just doesn't make sense.  Why do you want me to do that?"

So, second point, to be healthy one has to learn.  Learn facts, learn processes -- such as how to learn and how to challenge and how to connect with other people and with nature and with spirit -- because all that can teach us.  Great patients teach their doctors, and great doctors learn more from their patients than they do from other doctors.

3. When we live the way we lived thousands of years ago, when our bodies and minds were evolving, the healthier we will be. Our genes, our enzymes, our bodies, and minds are just extensions of those of our progenitors.  They have been thousands of years in the making.  We need sun, we need exercise, we need sleep, we need to play and fight in groups, we need to lift heavy things, and climb trees, and dig in the ground.  It was those types of activities that fashioned our bodies and minds, and that still are most powerful in making us physically, emotionally, and spiritually powerful.  We need to eat small amounts of lots of things, and every now and then, large amounts of a few things.

4. Finally, in order to be healthy, we need to love.  Falling in love may be our greatest joy and our greatest societal responsibility.  Love is at the heart of constructive creativity and all powerful connectedness.

Now some specific remarks related to questions and remarks in the chat room to which I didn't have an opportunity to respond.

Symptoms are what a person feels.  The symptoms can be caused by a disease, a mental state, or a treatment.  A person whose eyes hurt because of the side effects of eyedrops has symptoms caused by the treatment. Symptoms are known only by the patient.  Good doctors can get clues from the way the person looks or moves, but the best way for doctors to know what symptoms a patient has is for the patient to tell the doctor the symptom.  It is not the patient's job to explain the symptom (though that can be a help sometimes).  The patient's job is to say, "When I put the drop in my eye, my stomach hurts."

No matter how crazy the symptom seems, it is the patient's job to describe the symptom as accurately as possible.  It is then the doctor's job to make sense out of that.  Because patients may not make associations that are helpful, the doctor should help them.

For example, almost all men taking Timolol or a similar medication need to be asked:  "Have you had a change in your sex life since starting Timolol?"  That needs to be asked because few patients will volunteer that information to their ophthalmologists.  After all, they think, that eyedrop couldn't be making an erection difficult.  Nevertheless, it can!  Patients must not be selective about what they feel, telling the doctor only that which they think is important.  Patients must tell their doctors everything that they feel that is not healthy.

Good care is all about symptoms.  My job is to keep you feeling as well as possible.  The only reason to try to lower IOP is to prevent disability.  But most people with elevated IOP will never develop disability.  Why make such people worse by giving them disability due to the treatment, when they will never get disability even if they are not treated?  Thus, before starting treatment, the doctor must be quite sure that, in the absence of treatment, the person will become disabled in some way.

The correlation between many symptoms and signs is poor.  (Signs are what the doctor sees: pressure, cupping, etc.).  The correlation between some symptoms and signs is very good.  Doctors spend a lot of time looking at signs, hoping that the signs will give them clues to the symptoms that will develop.  Signs that relate poorly to future symptoms are level of pressure, age, race, sex and cup-to-disc ratios.  A sign that relates well to symptoms is the disc damage likelihood score (DDLS).

So to what should the doctor pay more attention?  It's necessary for the doctor to know how much damage is present (stage 1 to 10); how rapidly the damage is progressing; and how long will the damage continue -- which is usually the same as the number of years the person has to live.

The idea of taking responsibility for your own health is so foreign to most people that it is scary.  How much more comfortable to put our lives in the hands of somebody else, such as the doctor.  I hope these thoughts help those in the chat room who were confused.  Confusion comes from hearing ideas that challenge old ones. But out of confusion should come a new and better clarity.

On December 7, Dr. Myers discussed "The Image of Image Analyzers" in the Chat room. Click here for highlights of that meeting.

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