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**Cindy** · 24-Feb-2006, 12:55

Workshop #1, Part 2

Sandra Brown, M.D. brought us Part 2: Exploring the evidence.

Dr. Brown went through the steps of a dry eye evaluation.

Evaluation of: eyelids; tear film - 3 layers; eye surface - corneal epithelium and conjunctiva.

Tools of the dry eye evaluation: Equipment (slit lamp); Stains (flourescein, Lissamine Green); 'Other Stuff' (Schirmers, anesthetic, squeezing the meibomian glands).

Evaluating the Eyelids:
Slit lamp exam. Looking for: misdirected eyelashes, plugged up meibomian glands; eyelash grunge; What's under those lids? Flip them. Check the blink.

Evaluating the conjunctiva:
Slit lamp exam. Is the conjunctiva red, boggy, thin, lumpy, discolored, generally weary looking?

Evaluating tear film:
Lipid Layer: Meibomian glands, Tear "break up" time (TBUT)
Aqueous Layer: Rate of production (Schirmer)
Mucin Layer: "mysterious"

Test sequence: What do you do first?
Fire up the slit lamp. Take a look around. Check the eyelid margins and underneath the upper and lower lids. Check the conjunctiva. Check the cornea for haze, scars, nerves.

1. Start with staining. Flourescein shows a)areas of absence of epithelial cells, b)TBUT; Lissamine Green shows areas of devitalized cells that are still 'in place'; shows areas of absence of epithelial cells. Wet the strip with saline, not with anesthetic!

2. Schirmer is second. Instill anesthetic into lower lid pocket. Close eyes gently, count to 30. Blot excess with Q-tip. Insert Schirmer strip. Eyes gently closed, room lights down, peace and quiet. Five minutes.

Schirmer results: >15 mm, not aqueous deficient; 11-15 mm acceptable; 5-10 mm 'reduced' aqueous production; <5 mm 'definitely aqueous deficient'.

3. Back to the slit lamp. Mash the meibomian glands, check for open v. clogged. Check quality and quantity of oils secreted. Lower lids are probably more important.

Common errors:
1.Technician wishes to instill anesthetic to measure eye pressure before slit lamp exam and staining.
2.Stain strips are wet with anesthetic not saline.
3.Eyes are flooded with flourescein by using Flur-combo eyedrop rather than a strip...hides all details.
4.Anesthetic is not given time to work before Schirmer strips inserted.
5.Anesthetic is not blotted away, so the Schirmer strip just soaks it up.

Thank you, Dr. Brown.

**Cindy** · 24-Feb-2006, 14:15

Workshop #1, Part 3

Part 3: The doctor-patient team. by Rebecca Petris

I wish I could reproduce the slides that Rebecca used and that are in the Wellness Workshop binder. But I'm not that clever with my computer tools. Two of the slides amused me. The first is titled 'The Dry Eye Doctor' and shows a range of doctor styles and experience on a continuum from 'Comatose' >>The dry Eye Dunce>The Dry Eye Quack>MY (YOUR) DOCTOR>The Dry Eye Expert>> 'Godlike'.

The Dry Eye Patient has their own range (and slide) - 'Comatose' >>The Meekly Obedient>The Malcontent>ME (YOU)>The Nerd>The Junkie>> 'Compulsive'. Yep, I know where I land

.

There was some really interesting discussion during this session. Effective communication is obviously key to the doctor/patient relationship. Dr. Brown made a point that I found particularly helpful. She said that ophthalmologists are generally nerdy. They love data to graph, plot, test, compare. It's the language they speak. They require/prefer data from us that is measurable. e.g. "my eyes feel better. Last month I read only one book. This month, I have read one book a week." Or conversely, "my eyes feel like total crap. I love to read but my dry eye is so miserable I struggled to read one book last month. I would like to be able to read one book a week". They are not, generally, the touchy-feely types. In other words, they are a lot like my husband. Just the facts, m'aam.

That is one reason I think the OSDI is so important. It helps you to efficiently communicate your symptoms and goals. My doctor has given me a pad of OSDIs but you can easily print them out for yourself. I hand him one when I go for my exams. I occasionally fill them out at home and compare them to see if there is any rhyme or reason to the ups and downs of dry eye. Dates, seasons, times etc.

Another point I glommed onto was being careful not to diagnose myself. I went to the weekend fairly sure that the pain in my left eye originates in my lacrimal gland. Fair enough said the panel of docs, nodding that 'yes' it would be possible to have pain due to the lacrimal gland....UNTIL I POINTED TO THE SPOT WHERE THE PAIN IS....no, no, no!!! said they. Your lacrimal gland is ON THE OTHER SIDE!! oops. I kind of wish I had mentioned my 'lacrimal gland' self-diagnosis privately instead of publicly but it served to kick off a discussion. A rather funny one at that.

**Lucy** · 24-Feb-2006, 22:08

More on Dr. Sandra Brown

There was some really interesting discussion during this session. Effective communication is obviously key to the doctor/patient relationship. Dr. Brown made a point that I found particularly helpful. She said that ophthalmologists are generally nerdy. They love data to graph, plot, test, compare. It's the language they speak. They require/prefer data from us that is measurable. e.g. "my eyes feel better. Last month I read only one book. This month, I have read one book a week." Or conversely, "my eyes feel like total crap. I love to read but my dry eye is so miserable I struggled to read one book last month. I would like to be able to read one book a week". They are not, generally, the touchy-feely types. In other words, they are a lot like my husband. Just the facts, m'aam.

Cindy, you stole my lines. Really, you've done an excellent job of posting about the DEZ workshop. The above paragraph was, to me, an eye-opening point of the whole weekend. Dr. Brown is an upfront, honest and sometimes blunt ophthalmologist. I would like to see more docs like her. She will level with you. I'll just put my spin on Cindy's report below.

Dr. Brown described to us what NOT to expect from (most) ophthalmologists. They do not (particularly) care how we "feel." They do not necessarily "care" about our pain. They possibly can't even process the meaning of our pain. (The words and opinion are MINE and MINE alone.) Cindy did a very good job of explaining it. It is in their scope to refract us, and cure us - although many of us know dry eyes are not necessarily curable. We have things to work with, but it's likely a cure will some time away.

This, to me, was not a bad reflection on docs. It was one particular doc just telling how things are. My words: "it's not their job to care and 'feel' your pain." As a result, we should not look to them for sympathy. We may be expecting some "warm responses" about our problems and it's not likely to be from them. If you have a lot of pain, you're probably better off seeking help for that from another source. My GP is a wonderful, caring doc and understands pain. Others may not have this luck, but seek out a pain specialist. Diana mentioned she had good luck with a pain specialist.

Someone mentioned "how can we get these doctors to care and respond to us"? Can we sent them certain literature or mailings that will help? Nope. Dr. Brown just told us. This just resonated with me. I'm not sure if others got the same thoughts I did. We have to deal with our ophthalmologists and optometrists as they are. Optometrists probably "care" more than M.D.'s.

I will as a result of this "idea" not bother trying to explain things my eye doc doesn't "get." I will try to stick to "the facts." I'm sure Dr. Brown will not read this, but I do owe her a big thanks for this simple notion. She reminds me of someone I know very well.

**Lucy** · 24-Feb-2006, 22:15

A few words about Dr. Hector

I have little to add to what Cindy said, except for my personal opinion of Dr. Hector! He was a wonderfully funny, friendly, jovial fellow - unlike most docs. He added much to the meeting with his wonderful personality.

I told Melody (who has Dr. Hector as her own ophth) how lucky she was to be his patient. She agreed with me. He is someone I could feel comfortable consulting with. I've come to the point where I'd rather go to the dentist than the eye doc. Too bad I don't live in Fla. Gee, another reason for us to retire there. Hmmm.

**Rebecca Petris** · 25-Feb-2006, 07:00

Originally posted by Cindy

She said that ophthalmologists... love data to graph, plot, test, compare. It's the language they speak. They require/prefer data from us that is measurable....They are not, generally, the touchy-feely types....That is one reason I think the OSDI is so important. It helps you to efficiently communicate your symptoms and goals.

Yessssssssssss.

Not to get too repetitive here as Cindy and Phyllis have already put this all so well but I'll add my interpretation of what I was hearing for what it's worth:

We can't expect our eye doctor to be everything to us. We have to let them (AND help them) simply do on our behalf what they excel at, while we find other resources for the things they don't consider their responsibility or area of expertise - ranging from emotional support and validation (which we can get from friends, family, or at least the DEZ online community) to pain management (GP, pain management clinic, etc). Expecting from the eye doctor things s/he just can't give leads to frustration on BOTH sides.

Something one of the doctors also alluded to at one point is that it really isn't any more fun for the doctor to feel like they're always disappointing us than it is for us to feel disappointed by them. It is natural for them to dread seeing patients who are chronically dissatisfied with their performance. So cultivating the relationship really has to involve some thought/effort on our side, some attempt to put ourselves in their shoes. (If we expect them to see through our eyes, we can try to see through theirs sometimes.)

**mary kenny badami** · 25-Feb-2006, 16:12

Besides being useful, the Rebecca Petris/Dr. Sandra Brown show was entertaining in its own right!

Rebecca's part of the slide-show was hysterically funny, because each of the "types" that she identified, both in the doctor community and in the patient community, were familiar to those of us who frequent websites such as this one and LaserMyEye.

Dr. Sandra Brown's section, "I Speak Eye Speak" began by challenging us as patients to realize that we probably cannot change who our eye doctor is, how our eye doctor thinks, nor what our eye doctor values, so that our energy might be better spent in bringing the best information to help them help us. She said something like this: without invasive surgery, your cardiologist can't look at your heart, so during an ordinary visit they have to ask how you are feeling; but "we" can look at your eyes, and so "we" are likely to value "our" numbers and examination data more than whatever you are telling us. (Earlier in the day, she had said: the training of us as doctors is very defensive, we are trained not to acknowledge your pain, not because we don't want to deal with your pain, but because we don't want to deal with your emotions . . . )

This session had practical tips, even for some of us who think of ourselves as veterans in this arena of dealing with the docs. Dr. Brown said that you need to "control your chart documentation" by faxing in advance and/or bringing written materials to the appointment. Her suggestions included:

-- type it out
-- bullet and list everything that you can

-- start the page with your name, last name first
-- date of birth
-- date of visit
-- name of doctor
-- list of issues, questions, goals
-- list of exceptions, such as "I defer taking IOP measurement today"
-- quantify, quantify, quantify (such as: pain level, quality of vision, level of daily functioning)
-- insist that this paper be added to your chart as part of the record
-- keep a copy for yourself.

(There was a discussion whether the page will be added to the left-side or the right-side of your chart, which got more technical and deal with what is the official legal record for health insurance or lawsuit purposes, versus "secondary correspondence" which may or may not be of equal legal value).

An excellent session from two top-notch presenters!

**Lucy** · 25-Feb-2006, 18:48

Actual use

I actually used "this" method the day after I got home. With my GP. I had my annual exam and did just this! He was impressed as how organized I was. (I'm not.) I wrote 3 or 4 questions that would require specific answers. I put in a couple of sentences that needed attention FROM ME. Also a list of meds I take. (He prescribes all of them, but this way he doesn't have to flip through my chart.) My doc thought I was cool that day, with my list. (Not a long list, just the facts.) I noticed he put it on the right side of my chart.

**Cindy** · 27-Feb-2006, 09:19

Workshop #2

Workshop #2: Winning Strategies for the Ocular Surface Wars

This was a Q&A with panel participants responding to questions that had been submitted in advance by attendees and to a list of panel topics:

OTC lubricants (drops, gels, ointments)
Topical steroids
Restasis
Autologous serum
Pipeline topical drugs
Punctal plugs & cautery
Meibomian Gland dysfunction treatments (attached slides)
Soft lens "bandage"
Boston Scleral Lens (attached slides)
Environmental control
Nutrition
Surgical Treatments
Other topics

It is an ambitious list of topics and although it was suggested that we take 'copious notes'...I didn't. I took a few notes. I'm not a note-taker. What I jotted down:

Restasis can be applied externally with a Q-tip or cotton ball to lid margins.

Punctal cautery cannot be done with precision. For example, can't cauterize 80% (or 50% etc) closed.

Carlson Salmon Oil for Omega-3 oil supplementation.

Plugs can make things worse by trapping crud on your eye that would normally be swept/drained away.

Cholesterol numbers; know them; if your good cholesterol is too low, could affect the quality of tear film and amount of Omega-3 supplementation you need.

Dr. Brown presented "The Lowly Lipid" (My friends the meibomina glands) which I have already written about and have shamelessly copied and pasted:
Dr. Brown's presentation: The Lowly Lipid. My friends, the meibomian glands...

1. Meibomian Gland function: Complex lipids; Lipids seep into tear film and form outer layer. Blinking = pumping oil out.

2. When MG (Meibomian Glands) are bad neighbors: a)Poor lipid quality - non-liquid at body temperature, clogging, Don't do their job in tear film. b) Inviting rough friends: great growth medium for skin bacteria, Worsens lipid quality, Generates toxic metabolic by-products, "bacteria poop" (yep, bacteria poop. Bacteria has to poop too).

Sounds like a big, fat mess doesn't it? Well it is. The above in #2 constitutes a diseased MG.

Blah, blah, blah. SO....What do you do about it???
1. Effective hot compresses. Ditch the warm washcloth. It's not warm enough for long enough. Nuke a rice baggy.

2. Expression (squeezing/pushing) to get the oil moving and squeeze the thick, built-up crud out. This is easier to do on the lower lids.

3. Flaxseed oil. Carlsons Salmon oil. Some kind of high quality Omega-3 oil.

4. Improved diet. Yay!!!! Junk in = junk out.

Other treatments: prescription therapy. Antibiotics + steroid combo. Oral anti-biotic.

Mark Cohen from Boston Foundation for Sight followed with a presentation "The Boston Scleral Lens Prosthetic Device Used as a liquid corneal bandage for severe dry eye."

The lens is completely filled with artificial tears. Benefits: Mitigates pain/photophobia, nurtures healing of corneal epithelial defects, masks irregular astigmatism.

http://www.bostonsight.org/

**dianat** · 27-Feb-2006, 09:26

Greetings fellow WWW attendees and "lacrimally challenged" lurkers. I've not been online much this week except to take a peek now and then. Upon arriving home from Florida on Monday Baby Matthew cried at me for two solid days. I guess newborns really do like some semblance of a schedule. He actually helped me discover my new remedy for dry eye: when there's a screaming baby in your face for hours at a time, one doesn't really have a chance to consider that one's eyes feel like.

You're doing a great job of sharing some important details of the workshop. It was a very interesting exchange of ideas. Not only did we learn a great deal about the patient/doctor relationship, but we shared ideas with each other. These ideas ranged from the most superior methods for hot compresses to the suggestion that a doctor who specializes in pain can be a great ally. There really was a great deal of Q&A time that included the panel of doctors and the audience. The docs were spectacular...very knowledgeable and generous with their time.

I believe it was important for me that weekend to be with others who are struggling with the same eye issues. Up until that Friday, I'd never knowingly been in a room before with someone like myself. I felt less alone. I'll be there next year.

**Cindy** · 27-Feb-2006, 09:30

miscellaneous

I don't know which workshop these miscellaneous notes of mine are from but they seem consistent with Workshop #2. Like I said, I'm not a note-taker.

1. Discussion about a medic alert bracelet and what it might say: 'severe eye disease, call an ophthalmologist' (?) to relay your dry eye condition to emergency health care providers in the event you can't and your family is not immediately available.

2. Tips for going into the hospital: letter for the anesthesiologist/doctors/nurses detailing how you want your eyes cared for and what products to use and not use. Supply your own eye drops. Sample letter to download would be helpful.

**southhavenjen** · 27-Feb-2006, 12:17

Originally posted by Cindy

Workshop #2: Winning Strategies for the Ocular Surface Wars

Restasis can be applied externally with a Q-tip or cotton ball to lid margins.

Can you expand on this? Presumably this approach is to treat MGD?

Does applying Restasis to the lid margins take the place of instilling drops of Restasis in your eye or is it in conjunction with?

**Cindy** · 27-Feb-2006, 14:08

originally posted by southhavenjen: Does applying Restasis to the lid margins take the place of instilling drops of Restasis in your eye or is it in conjunction with?

This was an alternative way to apply it in the event Restasis stings too much when dropped directly into the eyes.

**jcorbett** · 27-Feb-2006, 16:01

Cindy - your tips for going to the hospital.....letter and/or downloadable instructions......how do you ensure that hospital personnel know where the letter is or where to download it from? Or even that a letter exists?
I have thought about this many times. Should something happen where my eyes have to be shut for an extended period of time, it would not be pretty when I attempted to open my eyes.
It seems they always ask you what you are allergic to, and that is always on your record. Perhaps you can ask for something like that to be in your permanent record?
Did anyone touch on what happens if you should need medical attention far away from home? Do the doctors attempt to locate your records back in your home area, and how would they know which doctor/clinic you go to? I wonder if there is a patient databank somewhere?
I know....so many questions....just wondering if these topics were addressed.

**Rebecca Petris** · 27-Feb-2006, 19:09

Originally posted by jcorbett

Cindy - your tips for going to the hospital.....letter and/or downloadable instructions......how do you ensure that hospital personnel know where the letter is or where to download it from? Or even that a letter exists?

I haven't had a chance to go through my own notes yet but I think that the idea we discussed here was a letter template that any of us could adapt for our situation, specifying necessary parts of our eyecare regimen (for example OTC products that might be crucial to keeping our eyes protected during anesthesia or recovery). We would then take it with us for any scheduled hospitalization or surgery, or a family member could be aware of it and bring for an unscheduled hospitalization. By having the letter put with the history taken on admittance to hospital (with allergies, current meds etc) it would have to be taken into account during inpatient care. I'm probably forgetting the details but I think that was sort of the gist?

Announcement

Workshops - 2/18/06

Workshops - 2/18/06

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