Visiting Dr. L. in NYC next week - please help with questions

[Ccoughlin]

Hi,
I'm going from Minneapolis to NYC to visit Dr. Latkany for the first time next week. My local doc things it might be ocular rosacea, brought on by Lasik. I had barely any problems wearing contact lenses for the 30+ years before getting Lasik last year.

I just tried upper plugs, and while they deaden the pain somewhat, they are very drippy (I got them 3 days ago) and they seem to have taken some of the sharpness away that I was previously experiencing. Is it too much to ask to hope for - - sharp vision and no pain!! I guess so.

Anyways, wish me luck and I'll let you know what he says.

- chandra in Minnesota

[Katewest]

I saw him last week....he doesn't believe in corneal neuropathy which is was Dr Jacobs at Boston foundation for sight said I likely have based on a scan at mass eye and ear. I would ask questions about your MG's and if he recommends the eye spa expression treatment then he can show you how to properly do it. I was disappointed that he told me to not express my lids anymore because I'm too focused on my eyes. I would have liked him to show me how. Hr kinda says the same thing to many patients it seems. Lids don't close all the way and allergies good luck and keep trying. If you suspect allergies at all he gave me a name of a good allergist that tests for weird stuff. Unfortunately I didn't have enough time to make an appointment

[Faith1989]

Kate,

I feel like you went through a lot the past few weeks seeing really good doctors.. What are your treatment plans now? Are you going to get tested and see? Or are you going to try the contacts? I am picking up my sclerals in a week. I am hoping for a bit of that barrier between my eyes and lids..my lids are my main inflammation source.

Good luck!! And good luck coughlin with everything!!

[browneyesblu]

Dr. L believes rosacea is allergy-related so he gives similar advice to everyone he thinks has ocular rosecea. He will probably tell you to have the plugs out if he thinks it's ocular rosacea, because if there is an allergen the plugs make it stay in your eyes longer. It doesn't matter what you ask, if he believes it's allergies, he'll tell you to get tested. I asked all kinds of questions and that's what he told me.

The latest research indicates expression and massage might be dangerous, it may change the shape of your cornea, that may be why he now advises against it. His book was written long before the research was published and only talks about a very gentle expression. But it's nice to know that at least some clinicians keep up with the research.

Kate, if it's Dr. Cohen he referred you to, he's a dermatologist with a special interest in rosacea who does special skin tests, looking for allergens that may trigger it. You may be able to find a dermatologist who does similar testing closer to home if you contact major universities and ask about that. Or you could try calling Dr. Cohen, he may know of someone.

[Katewest]

Faith- I just got a fax from Dr. Jacobs at Boston Foundation for Sight regarding the Mass eye and ear confocual microscopy I had done. The results were "evidence of bilateral neuropathy, with moderate and at times focal decrease in nerve density. Mostly with loss of branching. Also has increased tortuosity, presence of neuromas, beading, and focal areas of hyperreflective nerves". All that means that from the little they understand of corneal neuralgia they do think the scan came back abnormal. Thats how she explained it. Here are there recommendations moving forward:
Serum
daily wear soft contacts ( Dr. L also recommended this)
Lacriserts
low dose soft steroid (FML, Lotemax)
acupuncture
Systemic treatment for neuralgia ie gabapentin, pregabalin, tramadol )

Browneyes- I took out my plugs a few days ago. No real difference better or worse. He did say Dr. Cohen was a derm that tested for weird stuff. I'll keep trying to find an allergist/Derm but I've had the scratch tests, intravenous blood tests, and the true test. What is left?!?!
And good point about the expression. where did you read that? I don't think it has really helped me long term.

[soaps]

Hi,
I'm going from Minneapolis to NYC to visit Dr. Latkany for the first time next week. My local doc things it might be ocular rosacea, brought on by Lasik. I had barely any problems wearing contact lenses for the 30+ years before getting Lasik last year.

I just tried upper plugs, and while they deaden the pain somewhat, they are very drippy (I got them 3 days ago) and they seem to have taken some of the sharpness away that I was previously experiencing. Is it too much to ask to hope for - - sharp vision and no pain!! I guess so.

Anyways, wish me luck and I'll let you know what he says.

- chandra in Minnesota

All the best!!
An opth i saw said i had ocular rosecea post lasik but wad there prior however now due to damaged nerves and less tears the rosecea was making itself known and resltinf in flare ups with increased inflammation. and thus a negative cycle . true ? I have no idea. but avoiding food triggers helped get inflammation down in acute stage. or maybe it was something else like natural healing. but for me it was worth a try.

[LauraK]

Chandra:

Your story seems similar to mine. I had Lasik in January 2012. After 5 months of horrific pain/discomfort I made an appointment with Dr. L. I had spent months going to other eye specialists using everything from steroid drops to plugs, restasis, etc. Nothing worked. I was at the end of my rope when I went to see Dr. L last May. He spent about 30 minutes with me and quickly diagnosed me with Ocular Rosacea and allergies. He told me to stop all eye drops and remove the plugs. I was as nervous as hell to stop everything. He told me to use cold compresses 3 x day for a minute each time if I felt I needed it. He told me that the drops, etc were only making things worse for me. He also told me that my contacts in the past could have been acting as a barrier to help protect my eyes. He told me that if I didn't feel better after 30 to 60 days we could look at trying contacts as a "bandage". It was a long 30 days, but after that time I did start to feel better, my situation was much more manageable. Today, my eyes do get dry at times, but nothing like how they felt last year. If you want to talk more, feel free to PM me.

Thanks,
Lori

[Faith1989]

I think Dr.L may be onto something here... I have gone through it all also. Kate, serum drops have reduced the pain in my eyes and I have never had an eye surgery... My corneal specialist also suspects some nerve damage but doesn't know what from! Restasis is continuing to make me more red though my doctor said I have to give it two more months( right now I am only using it at night) Lotemax helps me alot, I suspect because I do have allergies. I have also been given Lyrica, which didn't help my eyes, just made me feel numb.

Laura- with your new regime, did any redness diminish? And did you go through a sort of rebound when stopping the drops?

[spmcc]

Dr. L believes rosacea is allergy-related.

So, it's true... I am allergic to exercise!

[browneyesblu]

Browneyes- I took out my plugs a few days ago. No real difference better or worse. He did say Dr. Cohen was a derm that tested for weird stuff. I'll keep trying to find an allergist/Derm but I've had the scratch tests, intravenous blood tests, and the true test. What is left?!?!
And good point about the expression. where did you read that? I don't think it has really helped me long term.

Kate, this is where I read about massage/expression most recently. I also have had no luck with allergy tests.

http://www.ncbi.nlm.nih.gov/pubmed/22309634

[Cali]

I read this post and “ocular rosacea” seems to be a running theme. Below I summarized the cause of “rosacea.” I think I’m in agreement with the general theme here about “allergies.” Rosacea is basically an “inflammation” problem that has to do with the biology of how the rosacea patient is built (something you can’t change, it’s biology based).

What we can do is avoid known triggers (stress, extreme heat, cold, spicy foods, histamine causing foods, etc.) which cause the body to overact and become “inflamed” which ultimately effects our eyes. Anything that upsets our equilibrium can cause rosacea to flare. Rosacea is all about inflammation. We don't want to activate these two interactive inflammatory proteins with a known rosacea trigger.

In summary, rosacea is the over-production of two interactive inflammatory proteins that result in excessive levels of a third protein. These proteins are anti-microbial peptides, small proteins in the body’s defense systems. Rosacea patients have far more peptides than is normal. The precursor form of these peptides is called cathelicidin which “normally” protects the skin from infection. Rosacea patients have too much cathelicidin in their skin and it’s in a different form that is “normal.” And rosacea patients have greatly elevated levels of enzymes called stratum corneum tryptic enzymes (SCTE). These enzymes turn the precursor into the disease-causing peptide. So basically, we as rosacea sufferers have too much cathelicidin plus SCTE which leads to rosacea. Antibiotics sometimes work because they inhibit some of these enzymes.

It was discovered by Dr. Richard L. Gallo at the University of California, San Diego. Here is the link: http://ucsdnews.ucsd.edu/newsrel/hea...RosaceaDK-.asp

He has his own lab at UCSD so maybe he can figure out a cure someday: http://dermatology.ucsd.edu/research/gallo-lab.shtml