Let's have a Lesson on MGD & Dry Eyes

[Rebecca Petris]

Precarious pronouns

Just to clarify, Bass, when I said "them" I was referring to us patients at DEZ, not the doctors (LOL, I won't defend the indefensible.) I was responding to Rory's statement that "I truly dont believe that anyone knows what they are doing or why they are doing it.... and this is fundamentally because no one knows what is causing their MGD." On re-reading, maybe Rory's "they" was doctors and not us? From some other posts I thought he was talking about us, but maybe I'm the one who's confused here. If so, oops!

[bassfan]

but I'd rather not see people here being told none of them know what they're doing.

While I agree that it may be overstated to say none of "them" know what they are doing, I also think it is important for newcomers to DES/this site understand that the vast majority of opthas/optoms don't really have much of a clue on the ways to mitigate this nasty problems effects. I have been a proponent of the "suckage" of eye doctors dealing with DES ever since I was diagnosed with keretaconus and have later been to five eye docs that have all said there is no signs whatsoever. From what I can tell that was some sort of insurance scam.

Getting to the point...I dont think it is wise for someone experiencing severe DES to put a lot of faith in a single doctor or their treatments. It can really mess with your head, which we all know is a big side effect of DES. The best treatment for me has been learning on my own. I have to deal with me forever, they only deal with me for half an hour!

bassfan

PS - Rory and Rebecca, what you've said is all good and very interesting to read!

[Rebecca Petris]

I had some mixed feelings reading this - from being very sorry to baffled and then I confess a wee bit indignant. I totally understand the need to vent - but I think that it should also be tempered by consideration for others. Frankly some of the things you've said here are rather insulting to those who have their disease under reasonable control - and discouraging to those who are on their way there. Blow off steam about your condition and experiences and (unnamed) doctors by all means, but I'd rather not see people here being told none of them know what they're doing.

MGD is complex and frustrating but there is overwhelming evidence that in a great many cases it CAN be understood and the symptoms can be controlled. In some cases things are quickly brought under control with simple treatments. In some cases it's a long arduous process with a lot of detective work, patience and discipline. Even in the very extreme cases where the MGs cannot be coaxed back into any form of submission, ways of treating or compensating for the symptoms enough to at least get people functional again are usually found.

The failure of mainstream ophthalmology to apply their collective brains to this problem so as to make information and diagnosis and real help more readily accessible to get us there faster and more easily and without so much frustration and confusion, well, yes, it's hard to accept that, but it can't ultimately stop us from moving forward. I'm grateful to the doctors out there who ARE working on this and I hope to see more. Meantime we all try and help each other by sharing what we've gleaned from everything from studying Medline to picking the brains of those few specialists who really have intellectually grappled with this.

Having said all that...

I agree with a number of your pet peeves. There are fads in diagnoses and fads in treatments. Many treatments are doled out thoughtlessly to every patient with similar symptoms regardless of the reasons for their symptoms. And I too am inclined to be somewhat skeptical of supplements.

But as regards the "treating the symptoms" situation. At one level I agree - I hate this overall trend in western medicine which compartmentalizes everything and does not look at the bigger picture. (For example, in dry eye right now, inflammation is all the rage, but why are we all inflamed? Another soapbox for another day.)

On the other hand, IMHO, you can take that "You're just treating the symptoms!" argument only so far. It's called common sense. If you lose a leg, you go get a prosthesis. If you're severely hypothyroid, you're probably better off taking a supplement than sitting around navel-gazing about the reasons while your body functions slowly grind to a halt. (Though if someone knows a better alternative, by all means let me know. ) If your MGs can't make nice thin runny meibum, you may or may not pin down the exact reason why not, but in the meantime if you want to see and feel OK, you help them limp along, be it with heat, hygiene, massage, antibiotics, fish oil, acupuncture or whatever seems to work for you. If your MGs have atrophied beyond all hope in this world, you put on a pair of moisture chambers and/or sclerals to protect your surfaces. If you have no idea and every doctor has completely different answers, you do what you can to get comfortable while you hunt down better answers. If your lacrimal glands don't work, you do whatever you can to make more tears, keep tears on the surface, or supplement tears. Hence bulletin boards like this, where we can swap tips....

[Rory]

15 years later and I am still as baffled and confused as ever.... i believe that is the real definition of CHRONIC?

I truly dont believe that anyone knows what they are doing or why they are doing it.... and this is fundamentally because no one knows what is causing their MGD.

One that is very popular these days is Rosacea (i see this is becoming terribly popular these days). I was even told that i have ocular Rosacea despite virtually no facial symptoms (perhaps the odd bit of facial flushing in central heating)....and even if we do determine that we have Rosacea..no one knows the cause of this......and so we are basically all left tackling the surface symptoms as all western medicine seems obsessed with doing..... we all have MGD, so rather than seek the answer to why we have this, we merely try to control it superficially.

The original poster for example was diagnosed with MGD.... and her Dr as far as I can see merely threw all available resources at the problem from lid scrubs to antibiotics to Restatis to fish oils etc etc.... surely these can not ALL be equally or even partially addressing the problem?..... you give Restatis a remarkable review and yet it has not been approved in Europe because it has not shown any positive clinical results (i believe refresh endura the vehicle was marketed and just as effective?)... your symptoms may have improved due to lid hygiene but because you are taking Restatis simultaneously ..you offer it some credit also .. i never understand this logic. And does fish oil really do anything at all, other than make vitamin companies alot of money? Does anyone really know what dosage etc etc. is effective if at all? And those plugs that opthalmologists seem too happy to dish out.... surely they are part of the problem also? If people do start to control their condition and improve tear production and quality....surely these plugs (which no one knows if i still have!)....will serve to disrupt any recovery...as they promote stagnant poor quality years anyway?

I cant really remember where I am going with this post...other than to utter confusion and oblivion.

Oh yes...if we do manage to unblock our supposedly blocked meibomiam glands, surely the reason they were originally blocked is because we are producing the wrong type of oil? Well maybe some people are...maybe others will produce perfect oil once they are unblocked.. i dont know and i dont know anyone who does..... so even if the oil is now clear to break through.... it will not offer the tear any useful protection anyway? and of course the glands will inevitably block up again also because we are not addressing the cause of the blockage.

Anyway the original post seemed so clear and positive and structured, that i thought I would offer my confused reality in return. I am sure that you are right and that I am just having a bad day.... but well a healthy balance is always good?

Yours bitter and cynical and even more confused than my 100 confused and useless opthalmologists,

Rory.

[Rebecca Petris]

My $0.02:

Warm compresses are no different from any other dry eye topic: No two doctors will have identical opinions, and no two patients will have identical results. For me, 10 minutes each evening with my rice baggy is ideal.

There are some common themes that we see frequently in the forums, and that many experts agree on, for example, the idea that too much heat or too frequent application of heat can irritate the lids and is especially problematic for people with rosacea.

For those doctors that have strong opinions about the method, frequency, etc. I think it is helpful to ask them what they base it upon. (Have they done any studies? How many patients do they have that do it and if so how similar are their conditions?)

[Jade9923]

I'm not any kind of authority on the hot compress part ofl lid hygiene. My biggest issue has been needing to do the scrubs with the baby shampoo to clean all the hard and crusty, sticky stuff off my lashed. That in turn then helps the glands flow freely. I haven't really needed to do too many heat treatments. Let's here how others answer your question

[odydnas]

Warm Compresses

Great post!! Thanks a lot! I wish I could find a doc like that...

Anyway, I had a question about warm compresses. I had one doctor tell me I should do warm compresses twice a day for at least 10 minutes. And then today, I had another doctor tell me that that method is not very effective. Instead, I should be doing warm compresses at least 4 times a day for 2-3 minutes.

So...which way do my fellow dry eye zoners find to be more effective?

[Deb Pap]

Thanks...!

Jade,

I too am in the Buffalo area. Would you be kind enough pass on your Doctor's name. I have having a bit of a hard time with MGD and just want someone I can talk to. Which I'm sure you know what I mean.

Thanks! Deb

[NYer]

Absolutely EXCELLENT post!!!! Thank you for that, Jade.

[jammie_t]

many thanks !

[Stanza]

Very interesting, thank you.

[Jade9923]

I was going to post this under the thread "Should lid massage hurt" but I decided to start a new thread. Under that thread many people were asking questions about where the meibomian glands are, what they look like, about the secretions that come from them. I wanted to take the time to start from scratch and explain how they work etc.

It seems like a refresher course in the composition of tears is a good place to start. It will help you understand these meibomian glands, where they are, and what their purpose is.

Tears have 3 layers. A mucin layer (sticky). A aqueous layer ( watery layer) and a lipid layer (oily layer) The watery layer sits on top of the mucin layer, and the lipid oily layer sits on top of the watery layer.

The oily layer is secreted from miebomian glands that look like tiny pin holes on your eyelids. They sit directly above your eye lashes (on lower lid) and directly below your eyelashes on your upper lid.

Healthy miebomium glands, when expressed with your finger or a q-tip, secrete this lovely free flowing oil that is runny. It spreads easily over the surface of the eye with every blink, protecting the precious aqueous watery layer of our tears from evaporating. If the glands are not working correctly, either not secreting anything or only secreting a thick toothpaste like secretion, then either no oil or a limited amount of oil is being spread over the surface of the eye causing the watery part of the tears (acqeous) to just evaporate. This is what causes the dry eye feeling. The meibomian glands must flow freely spreading this runny oil over the top of the watery layer (aqueous) to protect our tears from evaporating.

How do you fix unhealthy meibomian glands? First and foremost, you need to have a doctor who understands dry eyes and who can diagnosis and confirm that this is your problem. (I swear, some doctors don't even check these glands!!) Once established that you have MGD (meibomian gland dysfunction) there are many things that can help fix or make the problem better:

1. Regular lid cleansing/heat & massage. Let me break this down into two parts:

A. Lid Cleansing: Remember, your eye lashes need to be as squeaky clean as the hair on your head. If your eyelashes feel sticky with hard or whitish debris on them, those glands will not be able to secrete as easily. This was a huge part of my problem. If your eyes burn, many times it is because your eyelashes are coated with this sticky debris. So cleaning your eyelashes/doing lid scrubs can only help your situation. Feel your eyelashes during the day. If they don't feel very clean like the hair on your head, then do your lid scrubs with baby shampoo or other lid scrub pads on the market. This helped me tremendously. To this day and for the last 16 years, I need to do lid cleansing 3 - 4 times a day with baby shampoo and q-tips to keep my eyelashes clean.

B. Heat/Massage: The heat/massage part of lid hygiene helps to soften the consistency of the meibomian gland secretions. The goal is to make them softer so they become more runny. A thinner oil coats the surface of your eye more easily, thus preventing the watery part of your tears from evaporating.

2. Many doctors use a long term Doxycline or other similar antibiotics to help correct the problem.

3. Regular use of fish oil supplements has helped many people.

4. RESTATIS seems to help this problem tremendously in many people.

My doctor diagnosed my MGD many years ago. She would tell me that my meibomian gland secretions were thick, they looked like mushroom caps when she expressed the glands. Once I started the lid cleansing system, it helped tremendously. Once I was on restatis for six months, she said it was amazing to see. She would express these glands and NOT see mushroom cap secretions come out of the glands any longer, but instead, this lovely runny oily liquid flowing freely from them spreading easily over the surface of my eyes protecting my watery tears from evaporating.

It has never been determined why I have dry eyes. But it was confirmed that my dry eyes are caused by 2 of my 3 tear layers not working correctly: MGD from the oily layer not working right and also, not having enough of the aqueous layer of tears. Getting the MGD under control is a huge part of gaining comfort. Once my glands were working normally again, I had punctum plugs inserted in all 4 punctums (to help retain the limited watery, aqueous layer of tears I made) and my eyes were 95% improved. I went from total pain of dry eyes, not even wanting to live type pain, to almost normal. This whole process took many years to unfold. I still have the plugs, still do the lid hygeine, still take restatis and oil fish supplements and my life has gone from total hell to mostly total comfort.

I'll end the lesson now (if anyone still is awake) and encourage you to keep trying new doctors until you find someone interested/knowledgeable about dry eyes and MGD. By the way, the first doctor I saw about this problem was a leading, highly regarded opthamologist in my area who told me to keep using eye gels at night and that there wasn't much else we could do for my dry eyes. ALL DOCTORS ARE NOT CREATED EQUAL, even if they have a good reputation. When I arrived on the doorstep of my second doctor, she told me my meibomian glands were almost permanently scarred shut. She diagnosed the MGD, got me on lid scrubs, gave me doxy, put plugs in my eyes, got me on restatis and fish oil supplements and in a word, saved my life. In the beginning, she would spend 30-45 minutes with me on each visit trying to figure this all out. I would go out into her waiting room after the visit and see a room full of patients waiting for her. She cared and had the patience and interest to help me with my dry eyes. Dry eyes are not a money maker for doctors. They are very time consuming to deal with. It takes a doctor who is compassionate, who truly cares about your pain, and is knowledgeable about dry eyes to help you find comfort.

End of soap box. Hope this helped someone