Story time: My first dry eye doc's malpractice

[MGD1701]

So far I know only two World Famous Professors, Dr Eric Donnenfeld and Dr Korb
publicly (strongly) consider if it is NOT ok/right to send away patients with drops
when they asked other doctors in two different eduational workshops.

Prof. Donnenfeld detects each patient with Lipiscan for free - what a smart and decent doctor.
He has MGD maybe that is why. He has a great sense of humor too.

[Rebecca Petris]

It's a really interesting area of medicine. There are a LOT of factors that conspire to make specialty knowledge in dry eye relatively rare. It's easy to just get angry with all the doctors for not knowing, and wondering why we know more than them about some things... but we have to remember that they work within a lot of constraints too and there are SO many eye diseases they have to know about. Even amongst corneal specialist ophthalmologists, relatively few will be familiar with even the diagnostic guidelines set out in TFOS DEWS II, let alone the minutiae, let alone all the treatment possibliities, let alone the whole symptom side of things that we all struggle with. - With general ophthalmologists, the problem's just grossly magnified because they're dealing with the whole eye.

Having said that.... re your doc... obviously, you need to know which end is up before you employ a diagnostic tool of any kind. Shame on him, and obviously a reason to move on to the proverbial eighth or ninth. Sigh!

[MGD1701]

Hi Hopeful-hiker,

here is that report from Ocular Surgery News U.S. Edition, August 10, 2018

''The prevalence of dry eye disease and meibomian gland atrophy is appearing more frequently in a younger population, according to OSN Cornea/External Disease Board Member Preeya K. Gupta, MD. Gupta and colleagues published a study in Cornea reporting that

42% of pediatric patients between the ages of 4 and 17 years exhibited evidence of meibomian gland atrophy.

“This process is starting earlier, and whether it’s lifestyle, diet or who knows what, even our rising generation is experiencing this. It’s going to be ever prevalent.

Every clinician out there should know what’s available, and whether you personally choose to treat these patients or refer them out, you should offer your patients interventions for their disease earlier.
It becomes more difficult to treat as time goes on,” Gupta said.''

I only keep the text not the link but can be easily found, if one wants to read more.
------------------------------------------

Dr. Epitropoulos: In my practice, the average patient with moderate to advanced dry eye has seen eight or nine eyecare practitioners. In fact, it’s the number one reason they left their previous eyecare practitioner; they didn’t have a therapeutic relationship. When we finally diagnose them, make that connection, and really educate patients about the disease, it goes a long way.

from
https://www.linkedin.com/pulse/under...n-epitropoulos

[edmunder]

That osmolarity thing is terrifying. I think the reality is ophthalmologists arent the high flyers of doctors. Its about the easiest subject to become a doctor honestly. I know more now about dry eye than every doctor ive seen. I could probably learn the same about glaucoma or other issues.

I have to ask doctors to press on my glands every time. It takes 10 seconds but they dont do it. Their certification should be taken away.

The dry eye expert in my area said blood serum drops are very helpful. I said, all my glands are blocked. This is just treating symptoms. Long pause. She had no idea that Lipiflow or IPL would help.

[hopeful_hiker]

MGD1701 definitely! I did my exam 1.5 years before the dry eye began. They test for vision and glaucoma but never for the dry eye.

I watched Dr Korb’s presentation and he mentioned structuring the eyes are the same way as dentist. For instance, a technician would do expression, IPL, etc. the patient will be seen weekly, monthly, yearly, depending on the symptoms.

I think right now the docs address dry eye as a single treatment-based disease. However, many likely will need treatments every few months depending on their condition. People don’t only go to dentist once when they have a cavity. Rather they come back every 5-6 months to be checked and seen by both the doc and the hygienist.

I am curious about children and MDG. Where did you see that info? It makes sense but I am curious to read the story.

[MGD1701]

Well, I do NOT trust doctors that much any more - have paid huge/enough price = many glands are gone &
hard to work again even eyes are manageable now - despite of the fact that
I have NEVER stopped visiting doctors due to RC erosion for some years. All 8 doctors just recommended ointment, NO lid hygiene - which blocked glands. Not until 4 years ago did doctors finally detect dry eye (not even MGD) but only recommended drops (no oil-based) = NO treatment. Not until 2 years ago finally a decent dr told me, ''Sorry, can not help you'', on the 2nd visit (= wasted 6 months). Since then I have started my own research. Only one dr prescribed me doxy 100mg/day (to thin the oil) last year which I took 4 weeks. Almost none mentioned omega 3. To save glands, I did LipiFlow - which helped about 65%.

2 hospitals even did schirmer incorrectly - should be at the end not at the beginning. One dr Dr said no oil came out when she expressed glands, when I requested. 'Would it be because of the schirmer test,'' I asked. ''Possible,'' she answered and did not charge me money. One dr said my glands were great and no need to do warm compress, a few weeks later, another doctor said I should continue.

My Lessons
Educate myself & learn/explore NEW things are more practial - that is how I have improved my condition - for one year, particularly since I have found the pure HOCL lid spray, NatraSan (Avenova alternative, on 3rd attempt though - yet all +10 doctors said I did not have inflammation) + omega 3/GLA and mastering warm compress (constant/wet heat, 44C,15 min). Only about 25% doctors mentioned (10 min.) compress - with no details which was useless. One dr mentioned 45C on the 2nd visit (= 5 months later) but I already figured it out by myself then (with lot of research/experiments).

If I were a doctor, I would feel rewarding if my patients and I achieve sucess/results otherwise I feel I am useless. I would offer a to-do list explaining how to make warm compress works, lid hygiene (with tea tree oil), etc. Small effort but makes a huge difference.

Even kids aged 4 display gland atrophy, study shows (see #5 below). When one feels eyes dry/discomfort, mostly already at moderate level yet most doctors just send us away with drops. Why they are allowed to do so??
They should stop progression otherwise our glands atrophy, right?

Lastly, dry eye is more than affecting quality of life - could be NO life!!
So unfair is first doctors do not detect/treat early/properly, later WE pay expensive treatments in order to stop progression.
You are lucky if can still work as with income you can afford the expensive treatments. How about whose who are not able to??

[hopeful_hiker]

When I got my dry eye this winter, I eventually realized that the public healthcare was useless--apart from the stain, they had no tools. Moreover, they wanted me out of their office or simply did not have the capacity to care.

I went on to research the local docs. A few clinics came up. One had a nice website with common triggers listed on the website along with Lipiflow available on site.
The clinic is in the suburbs, so I had to take about 1h or even 1.15h to get there and then back. The doc seemed kind a but his spiel was pretty scripted. He talked to me about meibomian glands like I was a five year old. Oh well. I did not care. He had the osmolarity test and that's what mattered to me at the time.

He send me on my way with a printout of my results, TBUT, osmolarity, etc. I felt good. Someone was taking me more or less seriously.

A month later, my partner drove me to the location. Even by car it took about 40 minutes. Off I go again to do the osmolarity test and see how things are going. He tells me my osmolarity in one eye is 310 or around that, and the other is 342. "One eye is lagging behind but not too badly", he says. I get worried. This is some heavy stuff, to hear that your osmolarity is 342. The doc then adds: "It's ok, your eye will catch up, the osmolarity will increase once we get you on Xiidra".

Increase? Stumped, I ask him: "Are you sure the higher value is better?". He goes: "Why? Yes, of course. My patients feel better once we get the values up there in the 340's". I stumble out of the office confused and alarmed.

Keep in mind, I am the kind of person who can research things thoroughly and obsessively for hours if I am interested or out of necessity. I remembered the graphs well. Lower values are in the green. Some say 305 is the cutoff, some say 290's are even a safer bet. Either way, the lower the values the better.

I come back to the coffee shop where my partner had been waiting for me. I tell him about my experience. He does not want to believe that this doc is a wrong and neither do I. Not settling for the google image search on dry eye osmolarity, we find the official Tear Lab handout. Of course, I am right. The lower values are in the green.

Frustrated I come back to the office. The doc is out for lunch. The front desk staff looks at me with slight annoyance in her eyes. I wait. The doc comes back. I press him for answers. He repeats that the higher values are the better values. I show him the pdf on my phone. He lets out: "Gee, looks like you are right. I am not sure what happened, pretty sure though they taught us the higher values are better. Um, okay. Bye".

That is it. He made no attempt to make up to me. Retest. Although I later realized his tests were wrong anyway. My values never climbed that high. I would say 316 was the highest.

I have not done anything about it. I am not sure what I could do. I worry about his patients who feel better with 340+ osmolarity.