Guess Who Has Been Over-Treated For More Than Twenty Five Years?

  
When I was in my twenties, I was diagnosed with glaucoma. At the time, I didn’t worry about it. I was twenty-something, busy teaching, having babies, writing a book—and, with glasses, my eyesight was 20/20.

It was only when I moved to Manhattan twenty-five years ago that I began to take the disease seriously. A friend recommended an ophthalmologist who, I was told, was one of the best in the city. He regularly turned up on lists of New York’s star specialists, had an office on Park Avenue, and didn’t take insurance of any kind. Twenty-five years ago, this was unusual. But, my employer’s insurance was generous and paid most of his very high fee.

At my first appointment, I mentioned the early diagnosis of glaucoma. After examining my eyes, Dr. X told me that that I must begin using eye drops immediately. I also should begin making appointments to see him every four months so that he could check the “pressure” on my optic nerve. Glaucoma is the second leading cause of blindness in the U.S. There is no cure, but usually it can be controlled with eye drops. “It must be watched carefully,” said Dr. X. 

Over a period of years, I saw Dr. X regularly, and continued to use the eye drops, morning and night. At least once a year he prescribed a “field vision test” to check whether my peripheral vision was degenerating. Meanwhile, an appointment with Dr. X killed an afternoon. He kept his waiting room full. And while he had many minions (young assistants who seemed afraid of him), he was a solo practitioner, so the line moved slowly. He once explained to me that he preferred solo practice because, “I don’t want anyone looking over my shoulder.”

When I changed jobs, and no longer had the extremely generous insurance, I began seeing Dr. X less frequently. I recall one occasion when he berated me because I hadn’t been in for nine months. “Do you want to lose your eyesight?” he demanded. “Don’t you realize that you have to do what a doctor tells you to do?”  Clearly, I was being labeled a “non-compliant patient.”

From time to time, I would try another ophthalmologist for a year or so. Typically, they were less expensive, and would prescribe slightly different eye drops. They, too, put me through the tedious field vision tests on an annual basis, and their waiting rooms were also full. Usually I wound up going back to my “world class” Park Avenue doctor convinced that, given his utter lack of personal charm, he must be very, very smart. Otherwise, why would so many people pay so much to sit in his waiting room?

About six years ago, when I began writing Money-Driven Medicine, Dr. X and I finally parted ways. When I mentioned the book, and my interest in health care reform, he exploded. He felt strongly that medicine should be driven by “free market competition,” and expressed contempt for middle-class Americans, who complain about their doctors’ bills. “They take their children to Disney World,” he said bitterly, “but then don’t want to pay a decent price for medical care! Do you know how little money an eye surgeon makes in Canada?!”

He was in such a rage that I decided never to go back. Since then, I’ve seen two other ophthalmologists. The first one, who I’ll call Dr. Y, told me that in addition to glaucoma, I was also suffering from acute macular degeneration—a disease that will cause many members of my generation to go blind. When I asked why Dr. X had never diagnosed it, he explained: “he didn’t have the right equipment.”  Dr. Y ran a group practice, and they did have more equipment.

After a few years, I found a physician closer to home. Lots of equipment. An impressive HIT system that he had designed himself. But then his book-keeper began double-billing my insurer who, in turn, froze my insurance. It’s not clear that the over-billing was intentional, but it was very clear that he did not want to give the money back to the insurer. As you can imagine, this caused something of a rift in our relationship. (I’ve never had such problems with other specialists, but somehow my efforts to find an eye-doctor in Manhattan have been star-crossed.)

Ultimately a friend who is an M.D. recommended a new ophthalmologist, a young man from India who I actually liked very much. Dr. Z was funny, somewhat iconoclastic, and very candid. He could write me a new prescription for eye-glasses, he said, but the difference would be very slight. I would be wasting my money. The second or third time I saw him, Dr.Z asked me a question point-blank: “What makes you think you have glaucoma?”

I was stunned. Because over a period of twenty-five years five or six different physicians had been treating me for the disease??

“Look,” he said, “Glaucoma is not my specialty. But it is a progressive disease. What I can’t figure out is how you’ve had it for so many years with so little progression.”

“Because the eye drops worked?”  I asked. 

“Maybe,” he said. “But I’d urge you to see someone who does specialize in the disease, and have the doctor you saw for two or three years send her the records of your visual field tests over time. He gave me a card, and urged me to call for a second opinion. It turned out this doctor wasn’t available. And Dr. Y. had retired, so I never got the records.

Still, I thought about what Dr. Z had said and some months later did visit a glaucoma specialist. I asked her: “Is it possible I don’t have glaucoma?” I explained that I was no longer using the eye drops as regularly as I probably should.

After examining my optic nerve and checking the pressure (which was surprisingly low), she said: “It is possible that you don’t have glaucoma. Sometimes it’s over-diagnosed. But I’d like to put you on different eye drops, and run some tests.” (For information on how glaucoma continues to be both under-diagnosed and over-diagnosed click here. See also this AHRQ study comparing the effectiveness of various ways of screening for glaucoma and the harm caused by over-diagnosis.

Another field vision test. As usual, I passed with flying colors—or at least my right eye did. She showed me the print-out; I didn’t do as well with my left eye. Perhaps I was getting tired at that point in the exam.

So we scheduled another field vision test. This time, she would check the left eye first.

That was yesterday. The left eye looked very good. The pressure is extremely low.  This could be because I’m using the new eye drops. “It’s a good product,” she said. “The only problem is that I’m not at all sure you need it.”

“You really think I don’t have glaucoma!” I asked.

“Well, I didn’t want to say this before, but you were diagnosed in your twenties, and after all of these years, the disease hasn’t progressed? Give me a break!”

Still, she wants to be cautious. I’m supposed to stop taking any eye drops for six weeks. Then I’ll go back, she’ll check the pressure, and do another field vision test. If everything looks good, I won’t use eye-drops for six months. Then she’ll check me again.

“This is a disease that progresses very slowly,” she assured me. “Nothing radical is going to happen in six months.” She also made it clear that the decision was up to me. If I wanted to go on using the eye drops forever, I could. “But it’s never a good idea to take a medication you don’t need. And I’d like to get you out from under this diagnosis, if I can.”

I’ll report back and let you know what happens. But at this point, I’m fairly certain that I don’t have glaucoma. From time to time doctors have expressed some surprise that I did so well on the field vision test, and there is no history of glaucoma in my family. None of this is conclusive.

But if I had never met the young doctor from India, I probably never would have even asked the question. “Most doctors are not going to tell you that you don’t have a disease that other doctors have diagnosed,” my new ophthalmologist explained. “For one thing, what if they took you off medication and your eye sight deteriorated? You might sue them.” 

A very straight-ahead and cheerful middle-aged woman, she doesn’t seem worried about being sued.

As for doctor Z, perhaps in India, if a patient isn’t sick, you simply tell him that he’s not sick? An American patient might be offended. Maybe Indian patients don’t mind?

   

19 thoughts on “Guess Who Has Been Over-Treated For More Than Twenty Five Years?

  1. Great report; where have you been all my (medical life)?
    A couple of times I’ve challenged my doctors’ suggested line of treatments. One didn’t like it much and didn’t ask why I was doing fine without the prescribed medication.
    The other said “I can only prescribe or recommend what I’ve been ‘trained’ to do?”
    Thanks for you book.

  2. Gerald–
    Thank you very much.
    A doctor once tried to urge me to go on statins to lower my cholesterol. (I didn’t need statins, but I did need to change my diet– which I did.
    And my cholesterol levels dropped)
    When I suggested that I was wary of the side effects that can accompany statins–as well as recent reserach which suggests that statins have been over-prescribed, she replied:
    “I have gone to medical school. I don’t need more education.”
    “Great,” I thought. “Everything that has been discovered since she graduated just isn’t important?”
    Physicians do know more about medicine than the rest of us. But patients should be able to raise reasonable questions without being dismissed.

  3. Great story, Maggie. I hope that indeed your new eye doctor is right, and you were misdiagnosed. I think she’s taking a very prudent course . . . let us know how it turns out.
    I’ve had a similar experience with meds as you did with the statins. Last year, when I got my routine bloodwork done, my triglycerides were slightly elevated. My doctor wanted to put me on Trilipix. I decided no, I would change my diet. I cut way back on beef, ate more chicken and fish. This year my cholesterol is slight up, and my triglycerides are normal.
    So I’ll make another dietary change (reduce fats) and recheck the LDL in six to nine months and see where I’m at.
    These medications scare me to death. I don’t want to take them if I can avoid it through lifestyle changes.
    I do think your comment about Dr. Z is on point. It’s funny, I had just this discussion with my students in class today (we were talking about antibiotics in otitis media, and how they are often unnecessary). When people spend money to go to the doctor, they don’t want to hear that there is nothing wrong. They don’t want to have paid all that money to be told everything is OK. They are paying for a diagnosis and treatment, and they expect to get it.
    I have seen many patient’s irate when they are discharged without a prescription. It’s like some sort of justification, an explanation, “I’m smart, I don’t go to doctors unless I’m sick.”

  4. Wow! What a story!
    So Mr. Park Avenue runs a cash-only “world class” business, doesn’t want to work with other docs so they won’t be looking over his shoulder (or possibly questioning some of his diagnoses?), insists that patients come in regularly FOR YEARS to have tests they don’t need? It’s a license to print money. And all this without really even having to work up a sweat…
    A young med student friend told me once, when I’d asked her what field of medicine she’d like to practice one day, replied: “Well, dermatology of course – because of the Three T’s!”
    “What are the Three T’s?” I asked her.
    A:
    – you work Tuesday to Thursday
    – your hours are Ten to Two
    – you get lots of Time off
    Maybe your Park Avenue ophthalmologist operates under the Three T’s protocol too?
    Unbelievable!

    • How do you think the eye doctor can afford a place on Park Avenue——–by making up aliments to have their patients return more than needed. This is called, “unethical business practices”.

      • Artist Patti-

        To be honest, I don’t think he was aware that he was wrong.

        He didn’t think he was “making something up.”

        Part of his arrogance was his certainty that he could never be wrong.

  5. Panacea,Carolyn . . .
    Panacea–
    Thank you.
    I changed my diet by reducing how many eggs I ate. (I love eggs– soft boiled, hard-boiled, cold hard-boiled, scrambled, poached, etc. etc.
    Wonderful protein. Great source of energy for many hours.
    At some point a number of years ago I read a news story which said that medical reserachers had discovered that eggs really didn’t add to bad cholesteol. (I think the story was in the WSJ.) I wanted to believe this–and so I did.
    Recently, a knowledgable friend explained that the research was done “by the egg people.”
    Before I found out about my high cholesterol I was happily having eggs for breakfast 5 days out of 7.
    When I cut that out, you might imagine how my cholesterol dropped. (I don’t eat fatty foods and eat very little meat.)
    But even when I confessed to my doctor just how many eggs I ate, she wasn’t interested in change of diet. She wanted me to go on statins.
    And yes, patients who think they are sick are surprisingly unhappy when told that they are not ill. I think you are right: they have paid money for a diagnosis and treatment and they want it.
    They also don’t want to consider that perhaps something else is going wrong in their lives . . .
    (Google Dr. Nortin Hadler’s HealthBeat post on back pain-)
    Carolyn–
    Welcome to HealthBeat and thanks much.
    The good thing about your med student friend was that she was very honest.
    She wasn’t pretending that she was going to save people from dying or going blind .. .

  6. I’m sorry this happened to you Maggie. From your story, it doesn’t seem like there is a high probability that you have been damaged, this is good. Your story is so typical of what I have seen in medicine, if you have a hammer, it must be a nail.
    So frustrating. Much of it was unintentional I think although the way things are set up a doc makes more money and avoids more liability if they overtreat in most cases. So often this crosses the line into unneccesary morbidity and mortality.
    Much of it at hospitals is the environment fostered by the leaders.
    Maybe we should have term limits for medical center leaders or a round robin leadership set up.
    Has anything like that ever been done? How did it turn out?

  7. “patients who think they are sick are surprisingly unhappy when told that they are not ill. I think you are right: they have paid money for a diagnosis and treatment and they want it.”
    Maggie –
    When I go to the doctor for something that’s bothering me or am worried about and he tells me that it’s nothing to be concerned about or will resolve itself in a day or two and I don’t need a prescription, I’m absolutely delighted. I already take five prescriptions for medical management of my heart disease. I’m not anxious to have to take any more drugs beyond those, even for a short period.

  8. Yes- Patients like diagnoses when they are feeking malaise or discomfort. Diagnoses put these feelings in definable “packages” which then can be “treated”. I like to say to patients that I don’t know what “you have”. But I am here for you and will care for you anyway.
    Dr. Rick Lippin
    Southampton,Pa

  9. Hi Maggie – I’ve just been treated for glaucoma here in the UK. The key is that glaucoma is damage to the optic nerve – raised high pressure alone is not glaucoma, although it is the primary risk factor. So unless you had a retinal scan that revealed damage to the optic nerve in one or both eyes, you do not have glaucoma but ‘ocular hypertension’. A lot of people with raised pressures never get glaucoma. People can get glaucoma with normal pressures. Obviously all of us should have regular eye checks and with raised eye pressures and no damage and normal vision it then becomes a matter of when to run checks – the UK NICE guidance from 2009 gives recommendations you may want to read (see the quick ref guide):
    http://guidance.nice.org.uk/CG85
    I see that one of the factors for going onto eye drops is central corneal thickness.
    In my case I’d failed to go for an eye test for about 5 years and high pressures were picked up when I did last summer. I saw a specialist and retinal scan test revealed a small amount of damage in one eye. I also have ‘closed angles’ (small anterior chamber I think ) so had a quick laser procedure to burn drain holes through the irises – this prevents an acute build up. I’m on eyedrops now and pressures are about 21, which is the top end of the normal range. I may be able to stop the drops as they do leak into the body and I’m not happy about taking them forever (I’m 54) but I guess I will have to continue – they are hard to put in yourself so my wife does them…
    As for cholesterol, I’m in a similar position – levels are just over the normal range and no change in diet will help but obviously avoiding fat is good. As most of my other risk factors are OK (weight, blood pressure) but some bad family history I will not be taking statins anytime soon and my primary care docs (I seem to see a different one each time) all agree.

  10. This is actually evidence that there is no doctor shortage, at least in terms of optholmologists in the NYC area.
    If there were an actual shortage, the eye docs would have enough “real” glaucoma patients such that they woulndt have to drum up business on the side by falsely diagnosing people with diseases they dont have.

  11. Chirs, Marc,Joe, Rick, Barry, Susan
    Everyone– Thank you very much for your comments and sympathy.
    Chris– Yes, I’m afraid this is an example of how fee-for-service medicine skews –and can corrupt– health care. .
    I don’t think that most of the eye doctors I saw were trying to make money on volume. I assume that they thought I had glaucoma because I came in and told them that other doctors had been treating me for glaucoma for a number of years!
    It just didn’t occur to them to question the diagnosis. (Or, if it did cross their minds, it didn’t seem like a good idea.)
    The doc who diagnosed me in my twenties probably didn’t have the technology that we have today. I doubt the field vision test existed. This was probably a perfectly honest misdiagnosis because the pressure on my opitic nerve was somewhat high (everyone should see Marc Brown’s comment.)
    But the Park Avenue Super-Star who I saw when I first came to Manhattan–and continued to see for years– insisted that I must see him every 4 months.
    From what I now know, that made no sense. The wide-angle galucoma that I supposedly have does not progress quickly. But I was an easy mark– a writer and single mother of very young chilldren told that she might go blind.
    I didn’t do any research at the time because, frankly, I was so scared. It didn’t occur to me that a doctor would tell me that I might suddenly lose my eyesight unless this was true. (I’m very skeptical, but not that cynical.)
    And I didn’t want to read about glaumcoma because I didn’t want to worry about the odds, at what age it might happen, etc. What was the point? I knew there was no cure, just the hope that if I used the eye-drops and saw a doctor on a very regular basis– it wouldn’t catch up with me. . .
    Marc–Thank you very much for the excellent information.
    It confirms what I have read recently.
    Looking back, the pressure was sometimes high, which, no doubt, is what led many of the doctors to think that I had glaucoma- even though one or two were a suprised about how well I did on the field vision tests. Eye-balling my optic nerve (or even takinga photograph of it) they couldn’t see any major damage–just possible “cupping”– but that’s a pretty subjective assessment.
    Joe Says–
    Thank you for the kind words. You’re right– I don’t think the treatment hurt me physically. Though the diagnosis did have a psychological effect.
    And, of course, I’m not happy about the huge waste of time and money. All of those years sitting in stuffy, overfurnished waiting rooms with stuffy, over-dressed people . .
    As for the money–this year, my eye-drops were costing $95 for a teeny bottle that might last 3 o4 4 weeks. My insurer and employer were paying the $95–I just had a $25 co-pay. When I think of how much insurers and employers paid over the years for the visits, the eye-drops, plus what I paid for the very expensive doctor.. .
    All such a terrible waste of health care dollars that could be providing care for kids who need it.
    Rick– Absolutely. I think most patients feel great relief when a doctor says “I know what is wrong with you.” Now somone else has taken charge of the problem. It’s like being a child, and having good parents who you know will take care of you.
    But I tend to agree with you & Nortin Hadler. So many of our physical aches and pains are symptoms of phsychological & emotional suffering, wear and tear.
    Barry– You’re lucky you feel that way. I too, prefer hearing that I’m fine. Though that’s why I rarely go to doctors unless I feel I must. They tend to find something. (This, after all, is what they are trained to do.)
    Susan– Yes, my experience in Manhattan tells me that we have plenty of specialists. If you have the money (or very good insurance), they have the time.
    (“If You Have the Money, We Have the Time” is the great Country/Western song that Alex Gibney, the documentary producer, used in the film version of my book, Money-Driven Medicine. It was one of the very funny moments in the movie.

  12. Hey, really great blog posts… I’ve enjoyed reading through your blog because of the great style and energy you put into each post. I actually run AceHealth.org, a blog of my personal research and experiences. If you’re interested, I would love to have you on as a guest blogger. Please send me an e-mail: bob.mauer65(at)gmail(dot)com, and I can give you more information. Looking forward to hearing from you.

  13. I know I’m a little late on this post but I wanted to put my two cents in. I am an optometrist who diagnoses and treats glaucoma on a daily basis. I too believe that it is over- and under-diagnosed (especially over diagnosed in the past). Our technology is much better these days so we can detect it very early and be very accurate in exactly what we are diagnosing. We now know that eye pressure is not the only, or even the most important factor, in diagnosing and managing glaucoma. Many people who have high pressure readings for decades never develop glaucoma, and some people have an extremely devastating delay in diagnosis because their pressure is normal. One very common scenario that i see in my practice is essentially your story. In most cases it is someone who has been on drops for 20 years or more with no visual field defects and a healthy appearing optic nerve because the instrument that we use to read pressure has an inaccurate reading. If your cornea is thicker than the average cornea it will cause a falsely high pressure reading. Then just as you mentioned, any doctor, including myself, is hesitant to say that you don’t have glaucoma and take you off of treatment for fear that you will never come back for follow ups, and subsequently develop glaucoma. Not only is that a possible lawsuit, but it is also one of my patients for whom I have sworn to protect their sight, and they go blind under my care. It’s not an easy subject to deal with, but I’m sorry that you have had to deal with this unfortunate situation in your life, and thank you for your story.

    • Ryan–

      Thanks so very much for you comment.
      Everything you say rings true

      Though I have to say that the doctor who treated me for most of those years was
      particularly unwilling to question the diagnosis.

      If I didn’t go in every 3 months for a check-up he would yell at me: “Do you want to go blind?!!!
      (He suggested that one day I might wake up not able to see. With the kind of glaucoma I had, that just
      isn’t true.)

      He didn’t take insurance, and charged about 2 times as much as most eye doctors in Manhattan. But he was on
      Park Avenue and rated as one of the “Best Doctors in New York” by New York Magazine.

      Finally, my field vision tests were always fine. (The assistant who did them always told me that.)

      This might have sent up a red flag re: his diagnosis, but he just wasn’t open to questioning his diagnosis.

      You sound like a much more patient-centered doctor. Your patients are lucky!

  14. I appreciate reading Maggie’s experience. I came across it during research because I’m in the same predicament: I do not believe I have glaucoma. It’s so frustrating because what if I don’t follow doctor’s advice and I am wrong?!! They have you right where they want you.

    • Sandy You need to find an eye-doctor who will gradually cut back on your eye drops-and see you every three months while doing this.
      Over the course of about 15 months my 2nd doctor concluded that I did not have glaucoma. My vision didn’t get worse as she took me off the drops.