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**Gretchen** · 10-Aug-2011, 02:01

Hi Trac -

First off let me say that I am sorry to hear that you have been through the whole DES wringer. It blows, I know.

I have read your post several times and I can't see where you mention a diagnosis just that you have aqueous deficiency, lipid deficiency (MGD) and blepharitis. Did one doctor tell you that you had all three? Or is this a compilation of things that doctors have told you? If it is the latter, I think that you need to get to a dry eye literate doctor to at least get a diagnosis. It sounds like you suspect Thyroid but there are other autoimmune problems such as RA, Sjogren's and Lupus that involve the eye as well. You may need a referral to a rheum as well as an endocrinologist. Or you may have ocular rosacea which often results in MGD and blepharitis. It sounds like someone suspects OcRos-induced MGD since you have been prescribed Doxy. The SLK, filaments and the corneal erosions are also pretty noteworthy. You are really running the whole gamut here.

From the mention of Stanford and UCSF it sounds like you are in the Bay Area. I found both Stanford (did you see Dr Ta?) and UCSF to be patently uninterested in treating dry eye patients. I go to Dr Michael Gagnon in Livermore and Dr Neil Friedman in Palo Alto. They are both private practice Doctors though both have some involvement with Stanford. Both will listen and treat your condition with patience and knowledge.

As you suspect, you are on a boatload of drops. I have ocular rosacea and I need to be very careful about what I drop in my eyes. My eyes just DO NOT like too much stuff in there. I suspect that this is the case with anyone with a compromised ocular surface. And then we sometimes get to a point where it is unclear what is helping and what is hurting us. I have been there before and just had to stop everything and start over. I am not advocating this for you however since it seems that you need much of what you are doing. Just for me, I need to be careful about overmedicating.

I found it interesting that you mention that you do well with an "eyeball bandage". I assume that this is a bandage contact lens. Have you looked into Boston Sclerals? Dr Gagnon refers people to Boston Foundation for Sight for their scleral prosthesis. It sounds like you may be a candidate.

And as far as surgery for SLK (I thing you mean SLK - Superior limbic keratitis?), gotta love Stanford that they tell you that they will operate on you but then you may need a corneal transplant afterwards. I would seriously look into corneal transplants - it is a major surgery with a long healing time and significant risk of rejection. They seem to love corneal transplants there. My nanny had a chemical burn to her cornea several years ago that has left her with corneal neovascularization with an ugly yellow lipid deposit on her dark brown cornea. Stanford eye clinic told her that she should have a corneal transplant. When I explained to them that she had severe dryness in that eye because the chemical also damaged her tarsal plate on her lid all of her upper MGs, the surgeon that we were consulting with told me that the eyelids "were not a source of lubrication" that he only looked for patent tear glands. SERIOUSLY. I was really freaked out when I left there that time. Apparently they are pretty free with the corneal transplants over there...but I digress.

Keep doing what you are doing but look for a diagnosis and then refine your routine based on that knowledge. I really wish you the best of luck in getting better.

Also want to tell you a story that you may want to share with your daughter of the "stupid glasses" comment.
A long time ago there was a young beautiful daughter that was mortified of her middle-aged mother with her big bumpy red nose and her buggy, red eyes that had no eyelashes! Yuck! The beautiful daughter used to laugh at her mom and make really mean and insensitive comments about her mother's pathetic appearance. The young beautiful daughter would laugh and say "I am SO glad that I did not get your skin and your eyes!" Well. Many years passed and the beautiful daughter married and moved far away to San Francisco. She had two young daughters, a great husband and a super job. Everything perfect just like she knew it would be. Except one day near her 40th birthday she noticed several large bumps on her up to now perfect nose. Then some red blotches. Then her eyes began to sting. She went to the doctor and he said " you have rosacea and ocular rosacea" And the now-once young beautiful daughter said "that's impossible, my mother has it, but I never did". And the Dr say "why once-YBD, didn't you know that rosacea is genetic as are most things and usually appears around middle age?" To which the once young beautiful daughter replied "Oh crap". And every time the daughter thinks about all of those nasty comments to her mother, it makes her tear up which now really hurts because she has dry eye! So I would relay this story to your daughter and gently suggest to her that Karma is truly a B&tch. I hope she enjoys my little yarn.

Feel better.
Gretchen

**jadavispcfl** · 10-Aug-2011, 03:57

I had some of your symptoms. I had the probing done for my MGD, and then had surgery to correct a large mass of veins on my sclera area and an SLK on both my eyes. My eyes were so red that you could see them across the room, and my eyelids were swollen. You can read about my experience on other postings. My doctor, Dr. ******, looks at underlying problems that cause the dry eyes. His website is: www.dr******.com. He has patients flying in from all over the world. He also knows people that are doing the probing in other places. I don't know if it will help you, but it might. You can check it out at his website. Hope this helps you like it helped me.

Jo Ann

**Rebecca Petris** · 10-Aug-2011, 07:36

Thanks for the organized rundown of your situation - very helpful.

Great advice from Gretchen.

So you seem to be pretty much bone dry, have some MG involvement of some kind, and have adverse reactions of various sorts to a lot of topical Rx's as well as environmental substances. Everything you have described sounds to me like it's a good time to look into PROSE. I didn't know Dr. Gagnon refers for that but sounds like seeing him would be a great way to kill various proverbial birds with one stone (2nd opinion on some other stuff, get a really good MG rundown, and consider suitability for PROSE).

While reading your summary I found myself curious to know more about your MG condition and how it responds to various treatments so far. HOWEVER, considering how much aqueous deficiency it sort of sounds like you have, I don't know how much 'comfort' mileage you'd be likely to get out of pursuing any sophisticated MGD treatments anyway. Personally I wouldn't be putting my money there.

It'll be interesting to see how that thyroid blood work comes back. If they're anything other than picture perfect I'd beat up the insurance company about getting an endocrinologist in the picture. I know next to nothing about SLK but I did just read something about incidence being considerably higher in Graves disease patients than the general population.

**Trac** · 10-Aug-2011, 09:00

Gretchen,

Thank you so much for taking the time to respond. The ophthalmologist that I have been seeing for the last 2 � years is Dr. Michael Gagnon. He is the one that diagnosed all of the reasons behind the dry eyes. Dr Gagnon said of all of the things that can cause dry eyes I have all of them. Yes, I do have rosacea, that is why I am on the doxy. I don’t recall Dr. Gagnon ever referring to ocular rosacea, but I could have very easily just missed it. I have had rosacea for most of my life. I recall as a child having red, swollen eyelids, and a yellow crust on my eyelids, that the doctor called “granulated eyelid”. I have also been treated for rosacea many years ago, 20+ years before dry eyes. But I never really cared about it, with rosy cheeks who needs blush. Once Dr Gagnon decided that surgery for SLK - Superior limbic keratitis he wanted a second opinion. He wanted to send me to UCSF, but my insurance company would not send me. That was when I went and saw Dr. Ta at Stanford. Dr Ta was the one that said I make no tears at all. Dr. Ta confirmed Dr. Gagnon’s diagnosis and said he was doing an excellent job of treating me. Dr. Ta is the one that said that the SLK surgery should be a last resort because my eyes were so dry, and if I had the surgery done I would need an embryonic bandage. I really did not feel like I got much out of the appointment with Dr. Ta, except to feel good about seeing Dr. Gagnon. My friends all think I need to find a different ophthalmologist because Dr. Gagnon has not been able to fix me in over 2 years, just don’t understand how complicated this all is.

Dr. Gagnon has had me tested twice for autoimmune diseases, ie: Sjogren's, Lupus, rheumatoid arthritis. I don’t know if there was anything else. I have been to a rheumatologist on Dr. Ta’s and Dr. Gagnon’s suggestion. The rheumatologist, Dr. Ohmoto in Pleasanton, did a ton of blood test. I had 10 vials of blood drawn at Dr. Gagnon’s for my serum tears and then 7 vials of blood drawn the next day for the half page of blood tests Dr. Ohmoto wanted. Everything came back fine, except for my vitamin D levels, which are now okay after supplements.

I asked to have the thyroid tests because a friend of mine said her nutritionist told her to get them done and I read about them in the dry eye forum. I just got a call from the GP office yesterday that said my thyroid test came out normal, but I have not gotten a copy of the results yet. I am hoping maybe my rheumatologist can read the thyroid tests. She was the first doctor to say that my thyroid tests could come out in the normal range, but not be normal for me.

Dr Gagnon has mentioned the Boston Sclerals to me. I thought he said I had to be measured at UCSF, but evidently it is LA or Boston. I did some research on the Boston Sclerals, it seems like they don’t like to put these on people with just dry eyes, maybe not a big enough bang for the buck. Also, several people on the dry eye forum said they did not help, it seems like the biggest problem was improper fit.

If filaments are defective tears and epithelial tissue I don’t see how I could have any epithelial tissue left at all on my cornea. I have so many filaments each day. A year ago the filaments were so numerous that I could not see at all, everything was white. I missed two days of work because I could not drive there, it was the first time I had taken sick time for myself in 13 years I have been teaching. Honestly, my eyes are better than the worse they have been. They use to feel like I had ice picks stabbing me in the eye, now it is more a battery acid burning, and gritty sandy feeling. However, my vision in my right eye, which Dr. Gagnon says is the healthiest looking of the two, is really bad. But like I said I am a school teacher and I have been on summer vacation, so no eye strain, no emotional student stress. Lots of sleep, I go to the gym and work out 2 � hours a day. When my eye moisture goggles fog up because my eyebrows sweat my eyes feel great. I am concerned when I go back to school in two weeks my eyes will get worse.

Gretchen what routine do you do for your dry eyes and how often do you see an ophthalmologist?

Jo Ann, Dr. Gagnon has suggested probing in the past, but when I said I would like to try it the last time I was in he suggested we wait until after I go to UCSF and see what they say. It is really frustrating because I have had a referral for UCSF for a week now and they have not called me to schedule an appointment. I called them yesterday and because there is no specific doctor named on the referral I have to wait until they review my referral and decide which doctor is best for me.
Jo Ann did the probing help your tears get more lipid layer around them?

I am sorry I left so much out; there was so much to tell and thanks for your support. It is nice to know somebody out there understands what I am going through.

Trac

**Rebecca Petris** · 10-Aug-2011, 09:38

I did some research on the Boston Sclerals, it seems like they don’t like to put these on people with just dry eyes, maybe not a big enough bang for the buck.

That's a common misconception. They have been fitting them for dry eye for many years now and there are published papers on it esp. for graft-vs-host and/or Stevens Johnson Syndrome I think. and I know dozens of successful cases, mostly though not all with extremely severe dry eye.

**eyes kaput** · 10-Aug-2011, 10:00

Trac, it sounds like you're in the Bay Area. Would you mind private messaging me the name of the doctor who prescribed you the C-serum tears? I'd also love to know if you have any local doctors to recommend. I can't say that I do, unfortunately. Thank you and welcome to the community. It really helps that there are people who "get it." It's really, really hard when other people think they get it and that we're just exaggerating our condition because we're... well, dramatic babies.

Oh! I did see an endocrinologist - who I can recommend - out in Lafayette. I am borderline hypothyroid. I just started Armour thyroid. I've seen a few stories online of people whose dry eyes have been helped with thyroid meds, but honestly I am doubtful it will help. I just can't afford to get my hopes up. But it's worth getting checked out definitely.

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