Newbie Here with Question about Lipiflow

[EyesOpen]

You may not have a true basement membrane dystrophy, it may just be induced by the damage of sleeping with your eyes open. It’s a what came first scenario, the chicken or the egg. Do you have EBMD and that’s causing the erosions, or did sleeping eyes open cause erosions and subsequently, a basement membrane “problem due to inadequate healing.

I do have EBMD, but just around the peripheral of my corneas, and the right, problematic eye (that gets the most erosions) is right along the lid line--so opening my eye, or not closing it all the way when sleeping, causes the erosion.

[EyesOpen]

Have you hit the Subscribe button (top right)? If so and you're not getting notifications, spam folder and typo in the email are the only things I can think of but Brent may be able to help further

All is in order, Brent found (and I just rechecked). Unknown why I'm not getting notifications, and I check my spam folder before deleting.

[EyesOpen]

Know lots of people who have done PTK... people with very sharp vision tend to shy away from it *if* they can because of potential for impact on vision... I would say, if you're not way off the charts severity-wise (epi falling apart) then often you can just baby things back to health without ever taking off the epi. Goggles, right lubricants, tape at night if having erosions more than once a week... extreme care opening lids in morning or middle of night, etc... Immobilizing the lids, in my opinion is a key part in preventing erosions.

This has been my thought--to baby corneas back to health after being untreated and then operated on. I don't know if my epi is "falling apart," but I know that at my 6-week Lipiflow check, Dr. Williams noted that the the tears/oils were running over the ridges of the EBMD.
I would like to know the condition of my epi, while understanding that EBMD in itself reveals some unhealth in the epi--with not anchoring as it should--I wonder if you know what specific exam would determine that, in order to monitor healing progress?

[Rebecca Petris]

Thank you for answer, Rebecca (I'm still not getting notifications).

Have you hit the Subscribe button (top right)? If so and you're not getting notifications, spam folder and typo in the email are the only things I can think of but Brent may be able to help further

I am severe enough to get erosions continually, and have seen two different specialists for either SK or PTK, the latter of which is the most likely. In the last 2 months, I haven't been as desperate for solution because I've sleeping with damp foam inserts (from TE) in the Onyx goggles. My eyes are actually soothed when I awake!
I'm wondering if you have anything to say about PTK, knowing how invasive it is?

Know lots of people who have done PTK... people with very sharp vision tend to shy away from it *if* they can because of potential for impact on vision... I would say, if you're not way off the charts severity-wise (epi falling apart) then often you can just baby things back to health without ever taking off the epi. Goggles, right lubricants, tape at night if having erosions more than once a week... extreme care opening lids in morning or middle of night, etc... Immobilizing the lids, in my opinion is a key part in preventing erosions.

I will ask about this coincidence at my Lipiflow follow-up this week. I do know that the eyelid being open creates the dryness within the EBMD, which causes the erosions, but do not know if the dryness could create the inability of the epithelial to anchor to basement membrane.

Well, I don’t think it’s just dryness that caused this, maybe I wasn’t clear. Any damage caused by an erosion can also effect the basement memnbrane. If you then sleep eyes open after the injury, it won’t heal properly. Then you have a faux EBMD. I guess it doesnt matter much why it’s happening. Although that can sometimes help you choose better treatment. Maybe not in this case.

[EyesOpen]

You may not have a true basement membrane dystrophy, it may just be induced by the damage of sleeping with your eyes open. It’s a what came first scenario, the chicken or the egg. Do you have EBMD and that’s causing the erosions, or did sleeping eyes open cause erosions and subsequently, a basement membrane “problem due to inadequate healing.

I will ask about this coincidence at my Lipiflow follow-up this week. I do know that the eyelid being open creates the dryness within the EBMD, which causes the erosions, but do not know if the dryness could create the inability of the epithelial to anchor to basement membrane.

You may not have a true basement membrane dystrophy, it may just be induced by the damage of sleeping with your eyes open. It’s a what came first scenario, the chicken or the egg. Do you have EBMD and that’s causing the erosions, or did sleeping eyes open cause erosions and subsequently, a basement membrane “problem due to inadequate healing.

[EyesOpen]

EBMD precludes you from lipiflow. If you go to the lipiflow site, EBMD is indicated as s contradiction. The cups that go into the eye could cause an abrasion.

I have RCES due to my EBMD and corneal dryness, but I had a Lipiflow. The doc knew about my EBMD and DED. I did not have an erosion from the Lipiflow, but I'll admit I wondered about the possibility afterwards.

My EBMD is mostly on the edge of my cornea, not over all over surface; and because I either don't close my eyes completely in sleep, the erosion happens right at that place of EBMD.
I also don't blink completely shut most times, and this can contribute to my DED. I have a follow-up appt. this week on my Lipiflow.

[EyesOpen]

There's quite a range of different ways doctors may choose to handle it depending especially on severity and whether you're having erosions. Common approaches for chronic ebmd include sodium chloride ointment (eg Muro 128) or if severe with frequent erosions, debridement, sometimes stromal puncture. But if it's mild often just lubricant drops are enough.

Thank you for answer, Rebecca (I'm still not getting notifications). I am severe enough to get erosions continually, and have seen two different specialists for either SK or PTK, the latter of which is the most likely. In the last 2 months, I haven't been as desperate for solution because I've sleeping with damp foam inserts (from TE) in the Onyx goggles. My eyes are actually soothed when I awake!
I'm wondering if you have anything to say about PTK, knowing how invasive it is?

[Rebecca Petris]

Please explain what you know about EBMD treatments, Rebecca--thanks.

There's quite a range of different ways doctors may choose to handle it depending especially on severity and whether you're having erosions. Common approaches for chronic ebmd include sodium chloride ointment (eg Muro 128) or if severe with frequent erosions, debridement, sometimes stromal puncture. But if it's mild often just lubricant drops are enough.

Shoot. My doctor hasn't followed up with me yet, but I will definitely let him know that. I'll still go forward with the meibography though and hopefully get more details about what's happening with my glands. And thanks for the PMs regarding my side sleeping and the inconsistency with my eyes burning. I hadn't thought of the possibility of that being related.

No worries, I didn’t either. Once I started protecting my eyes with gel and tape, things got a lot better. Still looking for a good PF gel though. I’m allergic to everything. Good luck.

[EBMD]

EBMD precludes you from lipiflow. If you go to the lipiflow site, EBMD is indicated as s contradiction. The cups that go into the eye could cause an abrasion.

Shoot. My doctor hasn't followed up with me yet, but I will definitely let him know that. I'll still go forward with the meibography though and hopefully get more details about what's happening with my glands. And thanks for the PMs regarding my side sleeping and the inconsistency with my eyes burning. I hadn't thought of the possibility of that being related.

EBMD precludes you from lipiflow. If you go to the lipiflow site, EBMD is indicated as s contradiction. The cups that go into the eye could cause an abrasion.

[EyesOpen]

Welcome EBMD!

I'm curious whether you know if you're experiencing more symptoms from the EBMD or the MGD, and if you are on treatment for EBMD. Also wondering if you're pursuing Lipiflow specifically because other treatments have not been enough? Lipiflow is good technology and all that, probably the worst that can be said of it is that it is overused in cases where not necessarily likely to be helpful.

Please explain what you know about EBMD treatments, Rebecca--thanks.

[EyesOpen]

I'm glad to have found this discussion, as I have similar symptoms EBMD.

A bit of my story is that I also have EBMD, and Dry-Eye. I started having Recurring Erosions about 5 months ago, after my cataract surgeries. I just had a Lipiview and Lipiflow done about 4 and 3 weeks ago, respectively.
I am still in the discovery stage with my DE, and have a follow-up appt. in about 5 weeks to see how my glands are doing, so I cannot speak to the success of the Lipiflow yet.

I will say that I appreciated the Lipiview, which revealed some reasons that I have DE. I recommend discovery like that exam highly. I also recommend a doctor who listens, doesn't just assume and prescribe. I spent about 6 months dealing with symptoms that brought me to the cataract surgery (narrow-angle closures), and no one diagnosed my DE until afterwards, so it went untreated!
I'm on Xiidra now for about 2 months, and I can't say that I notice a difference. I don't appreciate the cost unless I can see marked difference, but I'm giving it another 2 months.

You seem to be aware of your symptoms and journey, EBMD, which is important.

Rebecca, please explain what you know about EBMD treatments.