What do dry eye patients REALLY want from their doctor?

[Rebecca Petris]

Other than magic gloop, that is

The doctor(s) treating you for dry eye that you did not return to... what did s/he fail to do?

The doctor(s) you stuck with, even if not permanently... what did s/he do right?

Suppose a newly minted EyeOD or EyeMD were planning to build a dry eye practice. What advice would you give them as to how they could achieve the best word-of-mouth referrals around?

For the benefit of doctors reading this forum, please post your thoughts!

[poppy]

The doctors that I didn't return to... mainly it was because they were clearly not interested in dry eye and did not offer any follow up appointments. They made it clear they did not want me as a patient and were not willing to try anything to help me. As a patient if you don't suggest a timeframe for follow up visits, and make it clear that you are happy to keep trying until I get relief, I assume you hate dry eye patients and/or think my problem is trivial and don't want to see me again.

What I want from doctors:

Recognise the fact that patients who have had severe dry eye for years have read a great deal on the subject and most want technical details. Don't try to talk to us like we are stupid, we all know what MGD stands for, we know what blepharitis and TBUT means, we know what superficial punctate keratitis is, and I want to know if my corneas have improved since my last visit and the details! For example one doctor tried to "talk dumb" to me by saying I had "inflammation inside the eye" and to this day I am left wondering what part of the eye he was referring to because he was treating me like I was stupid! I KNOW I have inflammation, I want to know where it is and how bad it is! If we don't understand a technical term, I am much happier to go away and research it than to be left wondering what the doctor meant by his dumbed down comment.

Also, stop insulting our intelligence by giving a dry eye veteran the same old speech about hot compresses and artificial tears and how dry eye "won't affect my vision". That might be fine for a newly diagnosed patient with mild dry eye, but for us that have been suffering severely for years, we want to strangle you when you do this! And please, please don't try to blame the patient for being too lazy to say do hot compresses 10 times a day when the patient has already told you that THEY DON'T HELP or make it worse and doing more of something that doesn't work isn't a good idea. Please recognise that if doing hot compresses 10 times a day really helped me, I would do it in a heartbeat, the only reason I am not doing it is because THEY DON'T HELP.

[tearless2]

The opthamologist that saw me first (the one who was rated one of the "best" opthamologists by a local magazine) listened to me and was nice but...told me to come back in a month if putting eye drops in my eyes did not help and then proceeded to give me names of different eye drops. He said everyone was different and just keep trying different ones until I found one I liked. He did not mention don't use preservative free. I put those drops in my eye and the pain got worse. I didn't know what to do - I was supposed to wait a month. So, i went back to the doctor but he was on vacation. His partner said keep on using the eye drops. I was in severe pain - putting in even saline was burning. There was no one to help me.

I went to an optometrist recommended here. He knew exactly what I was talking about when I said everything burned. He was knowledgeable and told me how long I should take certain eye drops and what to expect. I can't remember but I think he gave me some lotemax and maybe plugs early on.

He told me to e-mail him every day and report how I was doing. I did so and he responded to me each day. He had me come in and check my eye pressure. He cared and did not just leave me wondering what I was supposed to do next. He guided me each step of the way and never gave up on me. At one point when I showed him an article on increasing frequency of restasis helping people he wrote a prescription for it. I am so grateful to him as well as this site for the recommendation.

[Guest]

The doctor I quit seeing after 3 years (my LASIK surgeon): Every time I saw him I would tell him I was using drops every 15 minutes just to get through my day - despite this, he'd look at my eyes, tell me I had 20/15 vision, and with a huge grin on his face, tell me I was doing "GREAT" and that all I didn't need anything other than artificial tears... after multiple appointments asking for him to do something, he finally prescribed Blephamide every third bedtime... when this still didn't give sufficient improvements, he still insisted I didn't need anything else since I was doing "GREAT!".

This felt so patronizing to me - my eyes hurt all the time, I wasn't able to do the things I used to do before LASIK caused my dry eyes, and this man keeps trying to convince me that this state of affairs is "GREAT!" ?!?!? It's one thing if a dr. wants to reassure a concerned patient that their eyes haven't been damaged by the dryness... or to reassure a concerned patient that their vision has not been affected etc... but if someone is telling their dr. that they are in a great deal of discomfort, the dr. shouldn't dismiss it as nothing.

I finally read the DEWS report, realized there WERE other treatments that could be tried, and knew I needed a new dr. I felt like all he cared about was keeping me from being upset, and he had no idea how to actually treat me. Also, he never ever told me I could come back if I needed anything... I felt like deep down he hoped to never see me again because he had no idea how to help me. Would it not have been better for him to admit he didn't know what to do from the beginning, rather than string me along for 3 years while I continued to deteriorate?

The new dr. I started seeing afterwards (I've been seeing him for a little over 3 years, and I plan on sticking with him for the long term) - he is also a LASIK surgeon, but he doesn't patronize me as the first dr. did. If I tell him what problems my dry eyes are causing me, he doesn't try to sugarcoat them or pretend it's nothing. Instead, he tries to help. He's offered me every treatment in the DEWS report. If a treatment was something he had never used before (ex. PROSE lenses) he reads up on it. He doesn't pretend he can fix this, but is willing to at least try his best. He lets me know I'm welcome to come back sooner than my next scheduled appointment if I need anything - this is great, since I don't feel like he's trying to get rid of me as a patient. Maybe some docs worry that if they say this a patient like me will be coming back every week... personally, I don't think this is likely since most of us are busy and have other stuff we need to be doing.

I'm in the health care field, so I'm able to read up on treatments and weigh the pros and cons. If a patient is not aware of potential treatments as I am, it would be nice for their dr. to spend some extra time at the first appointment to go over options, not just for NOW, but for future... go over the stepwise approach that can be taken with treatments. If you are suggesting their next appointment be in 1 month, let them know WHY (ie. maybe you want to give the current treatment being tried some time to work etc.)

Anyhow, under my current dr's care, I've improved a lot - I'm still nowhere near normal, but at least my eyes are more functional now. Since we're about to try the last main treatment option, I don't expect to have to see him very often going forward ... I assume just yearly followups since there is no point in going more often if there isn't much else he can do, right? But at least he's tried, and that's fantastic.

[kitty]

The doctor I did not return to gave me steroid drops long term without checking my IOP

The doctor I am considering leaving (after 20 plus years), did not do a complete exam in response to very high IOP, did not re-test visual fields when he said he would, did not do a dilated exam when he said he would and did not recognize he may be dealing with something outside of the scope of his training...e.g., I had to ask for referral

Another doctor I am considering leaving tells me "you will do this" and "you will do that". Wait a minute. It is my body and my money. No one can force me to do anything that I do not want to do. If I refuse treatment or diagnostics that are elective, and what I perceive to be nothing more than a money maker for the doctor, I should not be in a position to have to explain why I refuse. Saying no should be the end of it, not, "okay for now, but you will do it later".

The doctor I stay with? That is one who includes me as a partner in my care, one who empowers me, takes time to listen to my concerns, educates me, and, is always one step ahead of me. It is the doctor who prefers to do an old fashioned physical examination rather than relying solely on the next high tech machine's findings. I should not have to ask for a dilated exam, pachymetry, IOP check or referral when warranted. I guess I am asking too much?

[MikeM]

Solving the problem would be nice. Doing some analysis instead of the same old song and dance. Doing a Shirmer test, TBUT, chemical analysis of tear film and a complete exam to rule out other factors. And a technical explanation of what is happening.

[Guest]

... and a complete exam to rule out other factors.

Yes, that's a good one. Why not look into other contributing factors like autoimmune diseases, undiagnosed thyroid disease, allergies etc. In regards to allergies, not just environmental, but food allergies too... you just never know what might end up being that one thing that will help...

When I think back to my LASIK surgeon, in 3 years, why didn't he consider looking into other possible contributing factors that made my eyes so insanely dry after LASIK? My outcome is not typical, so it makes no sense to NOT look into other factors. Granted, maybe for some people they don't have any other factors contributing, but it can't hurt to check just in case.

[Cinque]

I have a complete phobia about anyone getting near my eyes - dates back to a horror story I read when I was far too young to be reading it - anyhow..

Glaucoma runs in family so I have to have a test regularly - one doctor got livid with me because as he closed in, I would jerk away, reflex can't help it. He asked my boyfriend to hold me down. Boyfriend sensibly declined fearing death. Nurse tried - I panicked - no longer welcome at that surgery.

Next doctor pretty much the same - I wrote him really strong letter following my experience with him and hopefully helped the next person like me, but I declined his offer of seeing him again.

Now travel from London to DC to see Dr Stopak who I have 'plugged' on the good doc site. He also prescribes my Restatis that I buy annually from his prescription as I can't get it in the UK. I find Restatis exellent and have been using it for three years, twice a day. Sometimes I need a little extra help and so keep a tube of Genteal gel but rarely need it. I say with this Doc because he is kind, patient and listens and most importantly, treats me as an individual. He knows I like to put in my own drops and will let me dictate the pace he moves at rather than just thrusting something at an eye.

[Cinque]

Ignore - read it wrong.

[Mawsky]

The Doctor I did not return to nor would I anyone else with similar practice, just didn't seem all that concerned for me, or interested in my Dry eyes, I found it completely crazy that a person would suddenly (so it seemed) stop producing tears. I am still amazed that the Dr. I saw showed no interest at all in getting to the bottom of it. In fact I made an appointment to see my GP, and get bloodwork done to check for Sjogrens, he never even suggested it, obviously he could not have cared less, I don't think he had a treatment to offer me except restasis, and frankly I think I bored him.

So the next part of your question is easier yet. I would love to see a Dr. who truly understood how life altering this condition is, and that there may be many different causes, and different ways to treat, A good Dr. cares for his patients, listens to them, and has empathy for their situation. A great Dr. is a scientist who wants to find answers because he does care.