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I live in Canada but I would pay anything to see this doctor at Penn State. I have seen her presentation and will be emailing her in hopes that she will see me and be able to help. No one here seems to know what's happened to my eyes and since I've been tested for all the major diseases, etc. and I'm not on any meds, the docs here just call it "unique". Well that's no help .....
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I go to another doctor who is her colleague at Scheie Eye Institute because the line to see Dr. Massaro is huge. Actually, they do the same treatments for dry eye patients such as Restasis, doxy , fish oil . However, both doctors (Massaro and mine) are involved in dry eye research. If you are willing, they can put you on autologous serum drops. Also, they have confocal microscope, and you can be participate in their research. They can make pictures of your cornea nerves and membrane glands, for example. But really, nothing miracle and super special. Additionally, they have connection with Dr. Rosenthal from Boston, and they know about how sclerals can help. -
I have seen Dr Massaro- I agree with Irina. I was not offered anything I didn't already know about or couldn't have gotten elsewhere. So I'd save my airfare Ericksa.Comment
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Thank you Bunny and Irina. This is helpful and a huge thank you for saving me the cost. I guess I'm just feeling desperate - but agree.Comment
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It's a desperate kind of situation- Other than being told "You're unique" have you found anything that helps? It's so frustrating when eye docs go cryptic on you.Comment
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Well, I do warm compresses 3x daily; I use HYLO drops (the gel actually doesn't work) every hour or so, even though it's supposed to last longer. Most drops only last 30 minutes for me and at night I use Lacrilube. It's a pain when I'm out, always having to slip away somewhere for my drops but I don't know what else to do. I take vitamin A pills and Omega 3. I have a specialist appointment on the 20th and I want to discuss punctal plugs. I'm not sure if it will help but it's worth a shot I guess. I keep my eyes closed as much as possible and have tints on my everyday glasses. I haven't been able to read my book in months and work is horrid. I just came home from the mall and it was awful but other than becoming a hermit, I just have to keep trying. How about you? How do you get through the day / night?Comment
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Dear E.
I know what you're going thru, I'm probably older than you (67 now,and have been at this for about 5 years-. I quit warm compresses a long time ago-they did nothing for the blocked glands and only aggravated skin under the lower lids. Cold compresses help me feel better and calm the inflammation..gel packs in the freezer or frozen bags of peas work. Right now, I'm also using 50% autologous serum which may be helping a little-other than that I use retaine mgd drops (purchased thru amazon) just about every hour. I gave up on night ointments, as whatever I used seemed to irritate-now I cut 2 squares of glad press and seal (one for each eye)and put a couple drops of retaine in, cover the eyelid area, making sure lids are closed as much as possible and try to get thru the night.. Other than that, it's sunglasses most of the time and a very low key lifestyle. I miss reading something awful!! quit the omega 3's and vitamins and haven't noticed any difference- Hoping the plugs will be your solution! I've had them-they do keep moisture on the eye surface -mine just wouldn't stay in for any length of time, so I'll ask about cautery at next appt..
Wishing you well, Ericska-please pm if you want.Comment
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Thank you Bunny! I actually do cool compresses as well when my eyes are burning. That is actually my preference but my opto wants me to do warm compresses so I do both. Do you use an eye mask with the press and seal? I haven't tried this yet but really want to.
I'm 47. I've had dry eyes for many, many years but it was always manageable and then something happened in August and I took a downhill spiral and no one knows why. I actually don't mind my new low-key lifestyle I guess - I mean I was always a homebody but it's the other things that i have lost because of this that bothers me. Like you, the reading!
I don't notice the Omega 3s work either, but again my opto wants me to continue so I am. I haven't heard of retaine mgd drops. I will look that up. Is this like Restasis?
Should I do the cautery right away or start with the temporary plugs?
How do I PM you? Sorry, I'm new to this site.....Comment
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Hi E-
Sounds like your opto may be going the usual route for dry eye patients which is warm compress, omega 3's and artificial tears as needed. I hope you'll be able to get more info from the specialist-Retaine mgd are over the counter preservative free tears, supposedly providing "serious dry eye relief". I only like them because they don't blur my vision the way most other otc drops do. Your specialist will probably want to try temp. plugs at first to see if this is something that will help before considering cautery- As far as pm goes, I've sent you one-just check at top of screen after you log in-click on messages- you should see something there from me-
take care, good luckComment
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Yes, but I must say this opto is better than the other three that I had. He actually specializes in dry eye and we've discussed sclera lenses when the time comes, punctal plugs, which he wanted to give me but apparently here in Canada only specialists can do that not optometrists. He does the dry eye questionnaire every time I see him to see how I'm fluctuating.
Okay, thanks, I will check the messages.Comment
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Sounds like you're in good hands then - glad to know that-Comment
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This is an excellent film clip Ericska. Thank you for posting.Comment
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Thank you LaDiva. I was so impressed with her when I saw it that I have viewed it a hundred times to see how it relates to me. Isn't she amazing?! I wish the docs here were this interested in dry eye disease but sadly that is not the case .....Comment
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Hi, perhaps you have corneal erosion like me?Originally posted by Ericska View Post
Cuz - sometimes - my eyes also beg me for cool, cool. Like you.
Yet, the doc's office had said:
..."do lots of warm paks & drops in prep. for treatment.
Result:
Excruciatingly sensitive eye during treatment, which may have fried my eye more.
Lesson learned:
Listen to you eyes over and above anyone's instructions.
i.e. your eyes want cool?
Keep (partially) wringing-out washcloth w/cold water, and place open eye against the partially-wrung-out cold cloth. DO NOT let the cloth touch the eye, rather just Gently against opened eye.
....then
once in a while alternate it, by doing the same with a hot-wet cloth.
BUT NOT TOO LONG ON THE HEAT!
Also:
Coffee approx. same time as Gabapentin (300mg.) help desensitize eyes a bit.
Especially if careful to avoid cold/dry air, such as wearing goggles atop eyedrops.
Tiny bit of White tiger balm near outer edges of eyes is also cooling.
Also:
For heat pak - I find flaxseed-pak the best.
What's not good for sensitivity is:
* Too much pressure placed against eyes (such as warm masks which dig in too much
* too-hot stuff placed prolongedly against closed eyes
* ingesting acidic stuff (yes, including citric, or even any vitamin-C. I guess a bit of Berry-C may be OK, or cherry-berry tea
CHEERIO! HELIO! Dry Eye Minni
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