Uninformed Consent

Funny how we can think we’ve figured out how to navigate the medical system, only to see just how wrong we are.

Quite a few years back I was diagnosed with a macular pucker. After two years of watching things, the retina guy told me it seemed stable but to come back if it got worse. Well, to tell the truth, after a while I forgot about it, but then I changed optometrists and the new one was insistent that I 1) figure out the cause of my double vision, and 2) follow up with a retina specialist because straight lines should not look wavy and it might be time to do something about this problem.

Back to the retina specialist I went, and when I asked if a macular pucker could be related to the RA, he said no. Most emphatically no. And when I questioned that, the man yelled at me. They do not know what causes it, but it is definitely not related to RA. At this point, I should have walked away. We all know this, right? Why didn’t I do it? Never mind the yelling (which was totally uncalled for). If they don’t know what causes it, then it could be related to RA. And I have since learned that since inflammation is implicated in this condition, it is related to the RA – which means the guy didn’t know what he was talking about.

Anyhow, he referred me to a surgeon and I thought I asked all the pertinent questions. We scheduled it early in the year so that all related expenses would fall within the same calendar year (hopefully save a little money). Then after the surgery, at one of the follow-ups, I expressed frustration that although all the wavy fence-posts had looked straight for a month or so after surgery, they were back to being wavy again. Would you believe that the doctor stared straight at me and told me that was never the point of the surgery?!

Apparently I assumed that if the problem was straight things looking wavy, the fix was to make them look straight again. So now I know that my definition of the problem might be very different than the doctor’s, and that I have to ask specifically what the goal of the surgery (or other treatment) is – because the doctor might have different goals than I do. Shouldn’t the informed consent have said what the goal of the procedure was?

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It really sucks to have glasses that are less than a year old only correct your vision to 20/200. Sadly, one possible complication of vitrectomy (surgery for macular pucker) is rapid growth of a cataract. Before surgery, ask your doctor about his complication rates – not average rates, but his/her personal outcomes. I know we’re supposed to ask these things, but I was so fed up with everything that I just wanted to get it over with. Bad choice.

At my three-day follow-up, they could see a cataract growing. At the three-week f/u, it was worse. At my three-month follow-up, the retina specialist told me to go back to my optometrist and get a referral for evaluation of my cataract.

This was not really what I signed up for, and it actually involved finding a new new eye doctor so that everyone would be in the same city instead of having my doctors forty miles apart and not have a clue who each other are. This eye doctor said, 1) the cataract wasn’t that bad, 2) I also had a small cataract in the other eye, 3) she was more concerned with my double vision.

I’ve had double vision for fifteen year and my old eye doctor never cared about the cause. Suddenly everyone thinks it’s a cause for concern. Instead of taking care of the cataract, I was sent for MRI and other tests, the result of which is that I: 1) do not have MS, 2) do not have Graves, 3) have unexplained double vision. All that time and money, but no answers.

Three weeks later I was back to my optometrist, and when I mentioned that my vision seems to be getting worse every day, she responded that the inflammation in my eye was a bit concerning and so sent me to a new retina specialist. Note: insurance companies don’t want to pay for two different retina docs in the same calendar year, so this was 100% out of pocket, which really sucks after you’ve met your family out-of-pocket max for the year. Ask questions before making this appointment. Maybe go back to the first guy, or find a way to make the insurance company pony up. Or if this has drug out ten months, wait another month or two so you’re in a new calendar year and the insurance company won’t squawk.

Eventually – more than a year after my vitrectomy, I finally got my referral to the cataract place. This was good since I’d given up driving due to being unable to see.

At first I was excited. They emailed me all sorts of information including short videos explaining the procedure and my options. They even encouraged me to ask questions. You know I did! I emailed my questions and their nice assistant responded that those were really good questions but she couldn’t answer them so she would forward them to the doctor, who would answer them at my appointment.

So.

After watching all their infomercials, I decided that my first choice would be a multi-focal lens. If that wasn’t an option, I wanted my vision corrected for distance vision. And at the appointment, they had me watch a bunch of new videos with info to help me choose what type of anesthesia to use.

Then the doctor finally breezed into the room. Given my vitrectomy, I’m not a candidate for a multi-focal lens. Which really stinks – and makes me wonder why I had to watch all those videos and think about choices if I don’t have any. I’m not supposed to waste their time, but they can waste mine?

And she doesn’t like the anesthesia I chose and wants to use the other one. Again, why bother to tell me there was a choice if there isn’t?

And then she said that some people will have one eye corrected for near vision and the other corrected for distance, and that way use mono-focal lenses, but not need glasses. That could work, but I want to see how they do with one eye before they go messing with the other one (cuz the other eye wasn’t really bothering me and I doubted insurance would cover that one).

When I said we’re only doing one eye, she said that they don’t like to make the eyes more than two diopters apart, so wouldn’t be able to correct my distance vision completely. First, that’s malarkey since she had just been offering to correct one eye for distance and one for up close vision. Second, that’s not a problem. I’m okay with leaving one eye at -3 while she corrects this one to -1; at whatever point I have the other eye fixed, the two eyes would be close and I’d be able to see better than I have in decades.

Just like that, she was ready to breeze back out the door but asked if I had any questions. Well, yes, as a matter of fact, all those questions that I emailed – I’d like answers to those. She had never seen them. So I don’t know if she never reads her email, or if they never sent them to her like they said they would, but she seemed pretty annoyed to have to answer questions, and didn’t actually answer all of them.

Did I learn anything from the first eye surgery? Apparently not. I was so tired and worn down by the months of tests and jumping through hoops that I just wanted to get things over with.

They’d had a cancellation and were able to fit me in the very next week. In that intervening week, I was very very tempted to cancel the surgery and get a second opinion elsewhere. Oh, how I wish I had.

But I had the surgery anyway, just to get things over with and finally be able to see. And I was stunned the next day to discover that they had corrected my eye for reading, not for distance.

Before surgery, I was told no straining after surgery. After surgery, I was informed that this meant nothing over 15 pounds for five weeks. Why the heck wasn’t this part of the informed consent?

So I’m making a list of things I need spelled out in plain English if I or my loved ones ever have the misfortune to need medical treatment ever again.

• How does the doctor define the problem? Why is this a problem? (ie, I thought wavy lines were a problem, turns out the doctor sees the problem as loss of central vision and doesn’t care about wavy lines)
• What is the treatment?
• Are there other options?
• What is the purpose of treatment?
• What happens if we don’t do anything?
• What is the expected outcome of treatment?
• What is that doctor’s personal complication record?
• What restrictions are there on activities and how long will those restrictions be in force?
• Get a second opinion!

Feel free to add to my list! No more uninformed consent!

What the heck is CHOLINE?!

Did you know that there’s a nutrient that is neither vitamin nor mineral? Choline acts sorta like an amino acid, and sorta like B-vitamins. It is a component of foods that our bodies need to thrive. Think of it in the category of micronutrients like vitamins and minerals.

But what does this essential nutrient contribute? And how much do we need? Where do we get it?

Purpose

• Our bodies require choline to do the work of making cell membranes. Without sufficient choline, those cell membranes are defective.
• Liver function depends on choline. Choline deficiency is implicated in non-alcoholic fatty liver.
• Healthy brain development and thinking depend on choline. Deficiency can lead to short-term memory loss. In an interesting study of seniors, choline intake was clearly linked with cognitive function, and deficiency might be implicated in dementia.
• Muscle movement requires choline. Deficiency can lead to muscle damage.
• Our nervous system needs choline for a variety of tasks, including regulating heart rate and breathing. Deficiency leads to all sorts of problems, one of which is decreased reaction times.
• Choline helps us metabolize fats. Isn’t it interesting that a deficiency can cause cravings for fatty foods?

Deficiency

Even though our bodies make some choline, we don’t make enough – which means we have to eat it.

Maternal choline deficiency is implicated in neural tube defects in infants. The more scientists learn, the clearer it becomes that choline is essential.

In addition to those problems mentioned above, choline deficiency can disrupt the circadian rhythm and cause sleep problems, fatigue, mood swings, and irritability. Anyone with a hint of autoimmune disease and the accompanying fatigue would be wise to examine food choices.

Sources

Omnivores rejoice! Choline is mostly found in meat and eggs. Although there are some plant sources, it is nearly impossible for vegans to get adequate amounts of choline. Liver is the richest source. Three to four eggs per day will provide a full day’s supply of choline. Or mix things up and eat two eggs with breakfast and a serving of meat for supper. It’s not difficult to get enough choline if you’re eating a balanced diet, so I am appalled at estimates that 90% of people don’t get enough.

I feel significantly better when I am careful about my food choices. Sometimes we think about macronutrients (proteins:carbs:fats), but micronutrients are also important — including the one that everyone forgets about: choline.

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For further reading:

• Everything You Need to Know About Choline
• Choline: The Underconsumed and Underappreciated Essential Nutrient
• Choline: An Essential Nutrient for Public Health
• Choline Under the Microscope
• What is Choline? An Essential Nutrient with Many Benefits
• Choline Fact Sheet

Another Reason to Hate Prednisone

Did your doctor ever warn you that cataracts are a possible side effect of steroid use?  I don’t think mine did.  I was warned about weight gain and thinning of the skin.  I was told how to taper off prednisone.  I was even told of the possibility of tendon rupture.  No discussion of eye care to delay cataracts ever took place.

Why do patients have to search to find information such as this?

Millions of Americans take corticosteroid medications daily to address a variety of health problems, from arthritis to asthma. While these prescription drugs often deliver considerable health benefits, users should be aware of the link between steroids and the risk for cataracts. Studies show that long-term use or high-doses of steroids can promote cataract formation.”

North Florida Cataract Specialists & Vision Care

Or this:

Prolonged use of glucocorticoids is a significant risk factor for the development of posterior subcapsular cataract.

PMID: 11952401

Or this:

Use of systemic corticosteroids is a well established risk factor for the development of posterior subcapsular cataracts (PSCs) in both children and adults.

PMID: 20621348

As well as this:

Cataract formation is a widely recognized potential complication of corticosteroid use.

American Academy of Ophthalmology

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So why the heck aren’t doctors teaching us how to take better care of our eyes? Site after site says that people taking steroids should see an eye doctor. If the doctor notices cataracts, then you can be told how to slow their progression. Isn’t that a bit late? Why not tell us that to start with? Maybe we could postpone or even prevent their formation? Websites that bring up the topic shouldn’t treat the info as if it’s a national secret. Why not just publish what we can do?

Fortunately I finally found a doctor who’s willing to share that information. W. John W. Murrell, MD, shares these tips:

• eat foods rich in antioxidants, especially Vitamin A
• limit carbohydrates, which are not good for the eyes
• wear UV-blocking sunglasses
• stay hydrated

NeoVision Eye Center’s tips are similar:

• eat leafy greens
• eat fruits full of Vitamin C
• consume Omega-3’s from salmon or nuts
• wear UV-blocking sunglasses

Dang. Why all the secrecy? We should already be doing those things!

We all understand that patients are supposed to read the package insert that comes with our meds. I even do it most of the time. But to be honest, at some point I start skimming for highlights so that I know what could be a potential emergency, instead of studying as if it will be a category on Jeopardy! – I’ll take prednisone side effects for $300, Alex:  cardiovascular symptoms…, dermatologic symptoms…, endocrine (no kidding!)…, GI… On and on it goes. Well, way at the bottom of the page is a section on ophthalmic side effects. Sure enough, cataracts are listed. Even if I’d noticed that info there, I do not have the training or background to do anything about it. My doctor thinks the benefits outweigh the risks, so I’ll trust the professional.

But I honestly feel that I should have been explicitly told that it’s important to take steps to protect my eyes, just like I was told how to taper off prednisone once it was prescribed.

That said, prednisone isn’t solely to blame for cataracts in RA. The infinite inflammation that goes along with RA and other types of autoimmune arthritis includes inflammation in the eyes – uveitis. And that is its own special problem:

Cataracts are a frequent complication of uveitis…

PMID: 29739026

So What Are Cataracts, Anyway?

On rivers, a cataract is a waterfall. In our eyes, mature cataracts look like waterfalls because of the way the lens clouds up; worldwide, they are the leading cause of blindness. The cloudy lens is caused by proteins building up on the lens, hardening it.

Prevalence

Although common, cataracts are not inevitable. According to my daughter’s nursing textbook, 80% of people will eventually get cataracts, which means a fortunate 20% of the population won’t. Online, doctor’s websites give slightly different numbers: one-in-six forty-year-olds will already have the start of cataracts, and by age sixty, that increases to one-in-three, and to one-in-two by age eighty. So they’re very common, but not inevitable.

Symptoms

Here is where I was shocked. I’ve had symptoms for at least fifteen years and my eye doctor never said a word and never sent a letter to any of my other docs. I am so glad that I changed optometrists a year ago. That led to all sorts of adventures in 2021. And my two cents, for what it’s worth, is that if you’ve had symptoms for a while and your eye doctor has been ignoring them, it might be worth getting a second opinion.

• bad night vision
• halos around lights
• double vision
• need extra light to see
• colors appear faded or yellowed
• sensitivity to light
• blurry/cloudy/dim vision
• need frequent corrective lens adjustments

Treatment

Currently the only treatment is surgery. You’d think that they’d find a way to go in and scrub off the excess protein build-up, but that’s not how it works. The doctor makes a small incision and removes the eye’s lens. Some articles will say that they remove the cataract, which is misleading. They take out your entire lens!!! If all goes well, an artificial lens can then be inserted. Insurance (and medicare) considers this medically necessary and will typically pay.

However, they pay for a bare-bones basic lens to be inserted. These basic lenses, as the name monofocal suggests, focus at one point; you can choose if you want your vision corrected to drive or to read, and will need to wear glasses for the other activity (reportedly most people get distance monofocal lenses, then wear reading glasses for up-close work). If you can afford it and it will work for your particular situation, it’s possible to upgrade to multifocal, accommodative, or toric lenses – these have the potential of allowing nearly perfect vision (not always, but sometimes).

However, I happened upon a 2015 study suggesting that Lanosterol Reverses Protein Aggregation in Cataracts. and a more recent article suggesting that they’re experimenting with eye drops to dissolve cataracts. It looks like they’re having success doing this with pets, but less success in people. I’m willing to be a guinea pig to avoid having the lens of my eye removed!

Hope all is well with you, and that 2021 is treating you better than 2020 treated the world 🙂