Image Source: http://www.holickieyecenter.com

Will my eyes ever have tears again?  Does anyone know the agony of having eyes that are as dry as a bone?  Am I the only one who has had this adverse side-effect from epi-off collagen cross-linking (CXL)?  Why can’t I find any answers, even from my doctor nearly 4 months post-surgery? Will I spend my life with onions taped under my eyes to get them to water?

Let me preface this by saying that I had a dry eye problem before I developed keratoconus.  Six years ago my eyes became very dry and I was having symptoms such as burning, irritation, pain, infections, my eyes being “glued” together in the morning, and whatnot.  I ultimately was referred to my current ophthalmologist 5 years ago and after a thorough exam, he told me I had severe meibomitis and it could lead to corneal ulcers if we didn’t get it under control. I had what?

Along the margin of the lids there are a series of small sebaceous glands called the meibomian glands. They create and distribute an oily substance called lipids. Meibomian gland secretions help keep the eye moist and protect the tear film from evaporation. Upon blinking the upper lid comes down presses on the oil and pulls a sheet of oil upwards coating the tear layer beneath to keep it from evaporating. Meibomitis refers to dysfunction and inflammation of these glands. Oil production by the glands decreases and the oils that are produced become thicker (looking like toothpaste). The reduction in the quantity and quality of the oily layer causes the tears to evaporate more rapidly and this leads to symptoms of dryness burning and irritation especially upon awakening.

Article Source: https://www.eyeconx.net/wiki/mediawiki-1.15.1/index.php?title=Meibomitis

So, for the past 5 years I was on one protocol and drug after the next to try to control the meibomitis.  Nothing really helped and I just dealt with it.  Since meibomitis affects the lipid, or oil, layer of the tears (see the diagram above), it made my tears too watery, which is very different from my current complaint. As a result, I had “dry eyes” that watered to the point that tears ran down my face.  This is because I essentially had no lipid layer (oil) in my tear film to give it viscosity.  How ironic and irritating, but boy do watery eyes sound good right now.

Somewhere between dealing with the meibomitis and the freshly diagnosed keratoconus, a new ophthalmologist started practicing at my clinic.  Due to my upcoming CXL last September, I decided to make my doctor happy and get a new treatment for meibomitis called IPL (intense pulse light), which is normally used for dermatological conditions.  This new doctor was going to be doing the IPL procedures and I booked an appointment, even though it’s not covered by insurance.

This is where 2 brains are better than 1.  He disagreed with every treatment my regular doctor was doing since I also have rosacea and it had spread to my eyes.  Ocular rosacea can cause meibomitis and doing things like putting hot compresses on your eyes twice daily makes any type of rosacea worse it seems.  IPLs were the way to go.  Here’s how this fascinating, yet rather painful and nasty treatment works.

MGD [meibomitis] treatments with IPL equipment select a narrow band of light wavelengths (500-800 nm) to produce heat on the skin of the eyelids. The minuscule blood vessels directly under the epidermis take in the light and as their temperature rises, the congealed secretions of the meibomian glands begin to melt and the glands open up. The doctor then applies some pressure on the glands to remove all the troublesome secretions. The heat also drives out skin and eyelid microbes, such as parasites and bacteria that can exacerbate MGD [meibomitis]. If you think of the time-tested warm compress, you’ll find the IPL device is essentially its high-tech version.

Article Source: http://EzineArticles.com/6050685

The new doctor gave me my first IPL treatment 1 month before my CXL surgery.  He thought I would be a great candidate for IPL due to having ocular rosacea, fair skin, and dark hair.  I thought I had won the jackpot for once. Normally, results aren’t noticed after the 1st treatment, but I did notice some improvement in my tear quality.  Oh, I was so excited!  Then I had the CXL and the water layer of my tears disappeared.  I’m also having a very slow recovery, which I presume is due to poor wound healing related to Ehlers-Danlos syndrome, but why is no one familiar with this problem?  Am I really the only one?

Since my surgery, I’ve had 2 more IPLs with more on the way, all 4 tear ducts plugged (already had 2 plugged), used every artificial tear known to man, had a chronic rash under my eyes from the aforementioned drops spilling out of my plugged up eyes, and gone through at least 35 tubes of eye ointment and gel, which is what I’ve resorted to in order to keep my eyes moist.  It looks great having all this goop in your eyes, by the way.  Now my doctor has me on Restasis® drops, which I had resisted for 5 years.  The active ingredient is cyclosporine.

The immunosuppressive effect of ciclosporin [cyclosporine] was discovered on 31 January 1972.  In addition to transplants, ciclosporin [cyclosporine] is also used in psoriasis…and, infrequently, in rheumatoid arthritis and related diseases, although it is only used in severe cases. It is commonly prescribed in the US as an ophthalmic emulsion for the treatment of dry eyes.

Article source: http://en.wikipedia.org/wiki/Ciclosporin

From the manufacturer:

RESTASIS® Ophthalmic Emulsion is a prescription medicine that helps increase your eyes’ natural ability to produce tears, which may be reduced by inflammation due to Chronic Dry Eye.

Article Source: http://www.restasis.com

It usually takes 3-6 months to even see if it works and is not cheap, even with insurance.  Due to side-effects from Restasis®, my eyes are red and irritated, full of broken blood vessels, and burn all the time.  I’ve been on it for 1 month with no results and after the continuing nightmare of my hair falling out due to the ocular steroids post-CXL, I’m wondering what Restasis® is doing to my body?

One benefit, unless it’s my imagination, is that I can eat spinach again.  I normally would scratch myself silly after eating even a leaf of spinach.  Is it a miracle cure for my plethora of food allergies?  Speaking of food, I tend to eat a Mediterranean diet and am wondering if I can just ditch Western medicine, sterilize my 5-star olive oil, and pour it directly into my eyes?

Please don’t try this at home.

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  1. Dawn Jones says:

    Hi, have you thought about plugs to stop your tears running away through the tear ducts? I had plugs put in many years ago when I was going through a particularly bad dry eye time and I recall they helped somewhat. Just a thought! Dawn

  2. Hey Dawn!

    Thanks for following my blog, btw. Hope it will be useful to you. I’m on blog overload right now due to my vision but have yours bookmarked and will be back. Hope the EDS info might come in handy, too.

    As far as tear duct plugs, I had 2 ducts plugged due to dry eyes from meibomitis yrs ago–that’s the disease that caused the tears to spill. They had tried to plug all 4 and it was like I was crying 24/7–terrible! Now I have all 4 again because of this strange post-CXL side-effect of ZERO tear production. Actually, I don’t know why it’s so strange. My epithelium (top layer of cornea) was removed, like in a PRK surgery for vision correction. A lot of PRK people get super dry eyes, too. So, the plugs do nothing as there are no tears in my eyes. Well, I appreciate the thought–you and my eye doc are on the same page!

    Also, I got linked to a great KC group on here w/lots of personal stories if your KC is still of interest to you. Not sure how to link, but here’s the site: http://keratoconusgb.wordpress.com/

    Keep in touch!

  3. Dawn Jones says:

    Thanks for the link very interesting, it’s good to read other people’s stories. Shame about the plugs! Sorry they were no good for you.

    • No problem and you’re welcome! Sharing stories makes you feel less alone with your disease.

      I like to think of this as a “reference blog!”

      • Lee says:

        Hi, I developed dry eye through ?? possibly my age, hormones, stress, who knows but it was not through Lasik as I have never had it.

        I have been diagnosed with MGD, Blepharitis and some ingrowing eye lashes, the condition has worsened over the past two years and I have been to four specialists, I have had all forms of treatment including restasis, doxycycline, I take Omega 3 supplements, I do hot compresses. I also have rosacea which I have finally got under control naturally and not through antibiotics but still I have dry eyes to such an extent that sometimes I am a recluse because I am in so much discomfort I don’t want to leave the house. A year ago I seemed to be better outside but now any slight wind that touches my eyes is agony.

        You are not the only one with this dreaded disease and I totally understand your distress. My specialist has told me that I have it for life but I refuse to believe it and I am going to get to the root of the cause somehow. I had some dissolvable punctal plugs inserted in the lower ducts just before Christmas, I think they helped a little but have obviously dissolved again. I may try them once more but I am worried about chalzions or other problems that may occur as my eyes are so swollen beneath and my left eye lid is continually swollen and red.

        I am in dispair just like you. Have you looked at the Dry Eye Zone, they have a lot of help there.

        I am going to fly from New Zealand to Sydney to try the IPL treatment for the eyes, has this helped you do you think?

      • Hi Lee,

        Thank you so much for sharing! I get so many hits on MGD I can’t believe it and this post needed an update. Just to clarify, I do have MGD from ocular rosacea, I have eye allergies (but do OK with a prescription drop), and I tried everything under the sun like you except oral antibiotics (I did do an ocular drop), as I don’t do well with antibiotics–especially that family. My surgery (CXL) involved the cornea to save my sight, so that is why I no longer have a water layer in my tears (6 mos now), although that’s not normal, either! In my opinion, the blepharitis is a general diagnosis that goes along w/MGD. The eyelash issue is probably just from all the inflammation… Not sure? If you have rosacea, I’d bet big money that it’s behind all this. My face is really clear now due to topical medications and Singulair (similar to you face-wise), but that doesn’t fix the eyes! I’ve seen 4 doctors too, and when they see rosacea in my notes, they all agree on that.

        Back to the MGD… I had all 4 ducts plugged pre-CXL and was a teary mess. The MGD makes my eyes water in the cold months and with wind or A/C (I live in the desert so not good). I ripped out the bottom plugs as those ducts drain the most (doc didn’t like that) and left the uppers in. I never noticed a difference, but I passed the paper test (those little papers they stick in your eyelids), so I guess it kept my water layer from draining too fast. I got that 1 IPL pre-CXL as you aren’t supposed to have CXL w/dry eyes. I DID notice my eyes felt a little less dry and my new doctor had taken me off all the meds./hot compresses, but I still used the foam lid scrub that feels “refreshing.” He’s the doctor that said IPL is best for ocular rosacea. It picks up color in the skin, so it zaps the little, purple vessels under the eye by cauterizing them. They come back, but with less and less frequency. I have no idea how this causes the glands to go haywire! I had the lowest setting on the IPL machine as I was burned by IPL treatments (for rosacea) on my face by a real idiot (be careful of that). They should grade your skin coloring–the US uses 1-5 and I’m a 3 (light olive), but that and my dark hair made me the ideal candidate per my doctor. If you have a darker skin color, you can’t get IPLs due to the burn issue, FYI. The IPL also got rid of all the hyperpigmentation I had for years under my eyes due to the hot compresses and my complexion. This is the doctor who said hot compresses are the WORST for ocular rosacea as it just creates more blood vessels. Why does no one know this? You probably know to wash your face in cold water? Same idea.

        So, I’m done with the IPLs now, but I needed 5, which is about right as they say you need 1 for each yr of the disease. I wish I could tell you I felt great, but I can’t tell as the “no water layer” thing is worse, although I’m still off all MGD meds. and don’t wake up with glued eyelids. My doctor, who is excellent, said I was better each time and more oil was coming right out of the glands (kind of gross). It does hurt, FYI, but I survived. I bruised horribly the 1st time, but got better each time as more and more blood vessels were zapped. Regardless, I do recommend IPLs for ocular rosacea, but if you have to fly to Sydney, it’s going to be a trip a month for who knows how long. If you can swing it, I’d go for it! Try 2 plugs (uppers) to help you out and once you start IPLs, I would stay far away from any hot compresses!

        Btw, I have seen that website but just deal with the current issue w/cheap lubricating eye ointment 24/7!

        Please post an update… Good luck with this horrid disorder! That was one long reply…

  4. Rebecca says:


    I am a dry eye (MGD) sufferer and also have rosacea I have had this for 10 years now. I live in New Zealand. My question to you is where abouts did you get your IPL done as I am keen to try it. What country do you live in and whats the name of the clinic.

    • Hi Rebecca,

      I live in the US, so rather far and I do keep my exact location and doctors private on my blog. However, if you are a rosacea sufferer like I am, I highly recommend IPLs. After 6 treatments (1 x month or so), my glands are much better as they were completely clogged for years and I tried everything. I have low vision due to keratoconus and can’t see my glands anymore, but my doctor can express my glands by touch now, even though it’s not exactly runny oil that comes out. I have a great dry eye doc who told me to stop the hot compresses due to the rosacea (we also respond the best, albeit with more treatments), as all I was doing was creating more inflammation/blood vessels, which is what the IPL really works on. I had hyperpigmentation under my eyes from the compresses if you’ve noticed this, so my doc was right and the IPLs got rid of that, as well. Heat is the enemy of rosacea as you know.

      My only protocol now is Azasite (an ocular antibiotic that’s working as an anti-inflammatory) and I will need IPL touch-ups in the future. I have heard IPLs are not available in NZ yet, but are available in AU, which would still be a lot of flights as I presume you need at least 5 and then touch-ups every year. They’re hard to find here outside of the large cities, but I think more and more doctors will catch on as they can make money off these (insurance won’t cover in the US). Also, thank you for the follow, but I only have 1 post on MGD and am not sure if I’ll post on it again as it was rather a tangent to my post-op dryness, which I still have.

      I’ll end this by saying I still am a dry eye sufferer, but I have other issues with my eyes (and live in a dry climate) and I also take Restasis due to that. I do feel like the MGD is much better from the IPLs (like the watering which is largely gone and morning symptoms), so let’s hope it gets to NZ soon. It may be there now–I’d ask your doc as sometimes if enough patients inquire, it prompts them to get training. The machine is the same as used in photo facials and easily pays for itself and I do think IPLs are overpriced if not covered by insurance (nearly $500 USD per treatment in the US or so), but what options are left?

      Thanks for the comment and I hope any of that helped. If you find a way to get IPLs, feel free to leave a follow-up comment as this post gets a lot of hits (I think the whole world has MGD!)…
      A 🙂

      • Rebecca says:


        Do you know of the doctor in Australia that is doing IPL I would fly there no worries as its really close and flight are now really cheap to Australia from NZ. I went over last year to Sydney for the Lipiflow treatment, due to complications it could not be done unfortunately.

      • Hi Rebecca,

        I got the Australia tip from someone else who left a comment on my blog who is in NZ and said she was flying to Sydney. I’ve never been down under as we say, but do know you would be rather close. She didn’t leave an update, and I often ask that to help others out. She also didn’t mention the doctor.

        I ran an extensive search online and couldn’t find a doctor that specifically does IPL, but I found a Dr. that specializes in dry eye–as well as my eye disease–in Sydney, although I’m not sure if he’s in practice as he’s a professor. He may do both. There’s a link to the clinic he works with in the profile below and his name is 1st on the list under DOCTORS I believe, so worth calling and if nothing else, they may know of someone who does IPLs. I’d also suggest calling the universities in Sydney or Melbourne with medical schools/hospitals to see if any ophthalmologists offer IPLs. It’s a little hard to find this in the US and is not FDA-approved (our gov’t agency that oversees such things), so IPLs are considered off-labeled here. Best of luck and here’s the info on Dr. Chan, who may do this (let’s hope), or send you to the right place. Btw, the dry eye info is 1/2 way through!

        In Sydney
        1) Dr Colin C. K. Chan specialises in refractive, cataract and corneal surgery. He is an expert in laser eye surgery and new treatments for keratoconus including corneal collagen cross linking with riboflavin, Intacs and Kerarings. He helped pioneer these new treatments with Dr. Boxer Wachler in the United States and has lectured widely on keratoconus. He also has a special interest in treatment of dry eyes. Colin teaches in the University of Sydney. His website: http://www.drcolinchan.com.au/experience/ His areas of specialty are: Laser Vision Correction: LASIK, surface ablation (ASLA, PRK), Cataract Surgery and Refractive lens exchange, Keratoconus: Collagen Crosslinking, Intracorneal Rings (Intacs, Kerarings), Corneal Transplant and Dry eye and Ocular Surface Disease.

  5. Lee says:

    Hi, I have only just seen your reply to my comment on here, thank you for all that information, I am still hanging out for the IPL treatment. I saw there was a comment from another New Zealander, by sheer co-incidence I do know Rebecca, we are both sufferers and bumped into each other in a shop one day where she overheard my friend asking about my eyes. Rebecca has since tracked down an opthalmologist in Sydney that may be using IPL, we have decided to travel together when/if it happens. Otherwise I will have to make very expensive trips to the USA. I do realise it will be one per month for four months but if it is going to help me then I am willing to try. Hopefully though it will be in Sydney in the New year and it is very reasonable to fly there from NZ.

    Thank you again, I have made sure I have ticked notify of comments so I can follow along.

    I do hope your condition has improved. I realise you have a different issue with your eyes with the CXL.


    • Hi Lee,

      Well, that’s a small world for you–how funny! I hope you and Rebecca find someone in Sydney and I did put a link for a doctor who treats dry eye, but no clue about IPLs, because you need the treatments 1 month apart and I ended up needing 6 and then you need touch-ups with time, so having to fly to the States every month sounds extreme. I’m not sure if the MGD causes all the pain, etc. in all honesty. I have this other condition called sicca syndrome (not Sjogren’s, but the dryness is the same) and that’s what’s killing me, plus whatever the corneal surgery did. I wish I just had the MGD so I could tell you how much it really did help and I was convinced pre-op that all the ocular issues: dryness, pain, watering, etc. were from the MGD and nothing else. Well, food for thought.

      Btw, I saw you have a blog and took a stroll to your spot. After I got sick (the big disease, not the vision loss from it) I got another degree in interior design thinking maybe I could work around my illness as it was something I was just good at. What a great blog and we must have a similar design style. I love textiles, color, eclectic design that pulls from traditional and on and on. Well, that was in the past, but I do understand how important good vision is in that field, or even if just a hobby. I wanted to leave a comment but get lost when not on WordPress, so just know I paid a visit.

      Best of luck to you and feel free to post the name of a doctor you find in AU as I get a lot of traffic from New Zealand/Australia on here!


      • Andrew says:

        Thanks for your posts. I too am very serious about undergoing IPL treatment when it is available in NZ. I live in Tauranga. I was diagnosed with dry eye and MGD in 2003, and since then have been obsessed with getting my eyes whiter again, instead of dealing with broken blood vessels on the conjunctiva that get more prominent every year. This really concerns me, as we all want to look our best. I am 31 now.
        Even though eye specialists don’t agree with me, I believe I have ocular rosacea. The symptoms match: red nose, cheeks, had acne as a teenager before I used Roaccutane (this may have exacerbated the MGD). Two years after the Roaccutane, I had a couple of bouts of conjunctivitis, a few times my eyes wouldnt stop watering (I believe this is because the oily lipid layer had become compromised), and since then my eyes have been red. .
        I’ve tried so many supplements, techniques, and eye drops. The last time I went to an eye specialist, he said I now had collarettes on the eyelid margins, and debris in the tear film.
        I’ve never had success with heat compresses or massages, but 3 weeks ago, I thought I might have made progress when I decided to heat the water jug, and put my face over it with a towel so that the steam would loosen the meibum around the eyes. Since then, I’ve been trying it every day, but the verdict is still out whether this is making progress. The first few times, I seemed to get a lot of oil secrete from the glands. But this may be also making more permanent blood vessels appear in the conjunctivas. So I don’t think the ocular rosacea agrees with the heat.
        These are some ideas I’ve had lately. Seems the next thing to try is IPL.

      • Hi Andrew,

        Wow, what’s the deal with MGD in New Zealand? Lol. For what it’s worth, you may want to see a dermatologist for a diagnosis of rosacea, but that’s another condition that’s impossible to clear up. I had clear skin until my early 30s or thereabouts, so the teenage acne would be different and if it cleared up with Accutane (as called in the US), then that wasn’t rosacea (an inflammatory disease), but you could very well have it now. Btw, it tends to run in families. I have rosacea on 1 side and mild MGD on the other, so really struck out there. I actually don’t get the typical redness, but more like bumps and dryness that luckily are under control with meds for the most part. I can’t do a thing about the ocular rosacea, though. I think having a lot of blood vessels in your conjunctiva is the sign that it IS ocular rosacea causing the MGD, unless everyone gets that. I do know that it’s those vessels that get zapped by the IPL (through the skin) and that somehow keeps the glands functioning better. And yes, heat is the worst thing for rosacea, so you don’t even want to wash your face with warm/hot water. The hot compresses did nothing for me and actually made things worse.

        I hope IPLs come to NZ soon–it’s rather strange as the US seems to be light years behind the other modern countries. My eyes don’t chronically water anymore or burn like crazy when I get up (and I never could see those blood vessels), but now I have zero tear production so can’t say things are great as I have to use an ointment in my eyes 24/7. I have other dry eye issues and have post-op dryness from corneal surgery last year, so I think you’ll do just fine once you can get IPLs. Fingers crossed it gets down there ASAP.

        Good luck to you… I think IPL is the best treatment for MGD, but I still use an antibiotic drop on my lids at night every other month to keep things at bay.


      • Lee says:


        Thank you for your reply and visiting my blog, not sure why it wouldn’t let you leave a comment, I think if your on Google plus you can. Anyway I have just this second come back from having a series of tests to see if I am a suitable applicant for trials on the IPL machine that is specific to MGD condition. They are doing clinical trials at the University in Auckland and I may find out later today if I am accepted. It is a clinical trial so only doing one eye but if there is an improvement at the end of the trial they will do the other eye. There has been no clinical evidence done on the IPL until now. I am praying I am accepted as if I am the first treatment will be in January.

        I am so sorry about your eye problem, I can understand it is a debilitating disease and even if your condition is different to mine, we both have dry eye which is the most horrible thing anyone could wish for.

        I will let you know if I am accepted to the trials and what the outcome is at the end.

        Thank you for your reply.

      • That’s great news, Lee, and thanks for leaving word so others will know. It would be great to hear how you do. I’m sure it will help so very exciting and no flying to the US. I had someone else from NZ comment yesterday so hopefully he’s following this thread. You know, IPL isn’t FDA-approved here for MGD either. I guess the docs are using it via off-labeling. Well, maybe you’ll have a 2nd blog just on MGD soon. 🙂

        I don’t do social media (is this social media?), so no FB, Google +, etc. and I think that was the issue, but can’t recall now. I know it’s been an issue before.

        Best of luck and I did have a bad case of MGD for years before the keratoconus showed up (also oddly more common in NZ), so I do understand how frustrating and painful it is (and all the tissues for the watering eyes).

        Glad to hear your exciting news…

      • Lee says:

        Thanks for your reply, I will let you know how I get on. I don’t think NZ is much worse than anywhere else as we have a tiny population, only 4 Million. I think its just that there is not much to help us in NZ and a lot of the eye drops are also not available here such as Azasite (It think its called that). I believe you are seeing more people from NZ as we are desperately searching for a solution to our problem via the internet. I believe the USA has the highest rates of the disease but probably because you have such a high population.

        I will let you know how I get on after the treatment, praying it works.


      • It’s just odd that I don’t get many comments outside WordPress and on this post, they’re all from NZ. Go figure. Per Azasite, that’s what my doc has me using at night on my lids only every other month so I don’t build up a resistance. The bad news is it’s been back ordered by Merck for months, so no one can get it! I really thought we had the worst healthcare in the world here, especially after chatting with Europeans and even Australians, but I have heard some dreadful stories out of NZ with my genetic disorder. Oh, what a mess we’re all in!

        Fingers crossed for you–I really think IPLs will help.
        A 🙂

  6. justin says:

    Hi I would be keen to know if anyone has tried lipiflow. I am going to fly from nz to Aussie to try it. I am pretty disappointed in the lack of understanding of dry eye issues by so called specialists in nz.

    • Hi Justin,

      I’ve never had Lipiflow, only IPL treatments. This is because my dry eye issues are in part due to ocular rosacea and IPL works better for that. Both will help if you have meibomitis (MGD). I can’t tell you how much it will help as I don’t produce the water layer of tears either, so my eyes are extremely dry even with IPLs. But, they do feel mildly better for a while after I get a treatment since I’m producing the lipid layer like normal. I would think that if MGD is your only issue, then it would be worth your while, but expect ongoing treatments.

      Best of luck,

  7. I just had Lipiflow yesterday. The doctor told me that I wouldn’t see any real improvement for four weeks. The Lipiflow device unclogs and extracts the oil from the meibomian glands through heat and pulsation. It’s not an unpleasant procedure. The hope is that once the clogs and old oil are removed, my body will start producing fresh oil again. Hence, the four-week wait to see improvement. In ten weeks, the doctor will follow up with a Meiboflow treatment (basically ultrasound with heat to stimulate the glands. I had two Meiboflow treatments prior to the Lipiflow). The Meiboflow and Lipiflow procedures overall are quite pricey and not covered by insurance, but after years of dealing with severe dry eye (and damaged corneas), I decided it was the next step for me. I’ve also been on Restasis for years, take a gazillion fish oil capsules daily, take doxycycline daily, use tons of lubricating drops daily, and always keep a supply of Lacricert on hand for when it’s totally unbearable. I’m grateful that at age 61, this is the only health concern I have, but I sure would like to be rid of it!

    • Hi Lori,

      Thanks for your very thorough comment as it will surely help someone else out there. I do hear you on how hard it is to live with severe dry eye, even if I have other health issues going on. Due to my keratoconus, I have to wear huge, hard plastic contact lenses in order to drive and get out for my appointments, etc. and it’s just torture due to the lack of tears. I have faith that the LipiFlow will help you out to some degree. I do IPLs as they work best with MGD from ocular rosacea and even though I still have no aqueous layer in my tears (or lack thereof), I no longer wake up with my eyes glued together from MGD and they’re just in a healthier state overall–even though they hurt so much. I currently get IPLs every 6 months and while the oil gets thicker by my appt, my glands are much less clogged than when I first started these (or so says the doc).

      At this point, all I use is Soothe lubricating ointment around the clock (aside from Systane gel drops when I have to wear my scleral lenses) and I’ve started using AddiPak preservative-free saline vials to calm my eyes for a few seconds. I’m using those to fill my scleral lenses, but find it just feels good to rinse out my eyes with them a few times a day. I still use TheraTears Sterilid 2 x day to clean my lids and find that refreshing. I also use Restasis, but am not convinced it does much. I had to ditch all omegas as I bruise very easily due to my EDS and they’re blood thinners. Like you and many others, I think we unfortunately need to wait for science to catch up. I do hope the LipiFlow gives you some relief once it kicks in.

      Thanks for dropping by,
      A 🙂

  8. Lynda McDrury says:

    My experience with dry eye all began six years ago after having LASIK on my eyes.
    I am a competitive cyclist and was very shortsighted. My prescription didn’t work with curved cycling glasses. I had no dry eye symptoms I thought prior to the surgery. I did however have a history of acne rosacea, though no eye issues I thought. I was intolerant of contacts though and light sensitive, Celtic colouring. I wasn’t aware of the link with rosacea pre LASIK but The surgeon reassured me there were no issues in my eyes prior to surgery to warn me away.
    Within a week of the surgery I had horrendous dry eye symptoms. I increasingly became reliant on drops.
    Irritation, gritty eyes. Foreign body sensation. Photosensitive. Discomfort on the ocular surface.Tears overflowing and stinging. Constant feeling of ache and fullness in the eye. Feeling very tired. It’s been life changing.
    I have had to convince my surgeon this is not normal post op recovery. I have had to be very strong and vocal in getting help. My surgeon told me its all in my head…that was a particularly hard day. I then searched for another dry eye specialist in Christchurch to back me. I need these guys as my eyes are dependant on their skill but I am running out of options I fear. They thought I had corneal nerve pain but the nerves apparently are intact. I was sent to a pain specialist and had a year on gabapentin and clonadine….dreadful stuff. My gut feeling is that’s not the problem so I stopped and rely on ibuprofen and Panadol.
    I now wear punctal plugs, I was intolerant to tetracyclines, prednisone didn’t seem to work. I use restasis eye drops though I am not sure how effective they are, systane plus eye drops. Halo- forte drops, lube at night. The drops sting and make my eyes feel very full. I worry that hourly use is damaging my tear structure. I have done moist heat treatment for a long time now and manual expression daily. Moisture retention glasses when using a screen, driving and at work on the computer. I also tried the blephasteam goggles twice a day lent to me by an optometrist from Nelson. I have also tried IPL. I am currently trying cool compresses to see if that helps. I have been on Thera tears and starflower oil. Diet rich in omega 3 and water. Stopped alcohol.
    I am on two weeks sick leave currently as I could barely keep my eyes open due to the discomfort. My work is busy and in aircon. My boss has been awesome and the days that I run my diabetes education clinics they turn the aircon off. But this last two months has been the hardest to manage ever. I am now looking at the possibility of having to leave my work….a job I love.
    The hard thing is is that to anyone I look perfectly well. I don’t have the obvious bloodshot eyes or reddened rims. I don’t get crusty rims. My eyes look glossy. It’s a hunch but I think there is a link between my rosacea skin and my oil glands and LASIK brought this all to the surface. The last two months I think I have plummeted into menopause.
    I went to see my GP last week, she started me on HRT to improve the dry eye. She wondered whether GINET OCP might help if HRT is no good. I had my bloods done which confirmed menopause and also high SHBG and high testosterone.
    can you help me at all?
    I know the above is quite an epistle..sorry.
    But I am desperate. I have always been a positive fit motivated person but I now feel trapped and struggling. My work and relationships are suffering. I know I won’t get back to the way things were but I just need to get better management.
    I look forward to your replies. Anyone especially from New Zealand or even Christchurch I would love to hear from you

    • Hi Lynda,

      I’m so sorry that you are dealing with this, as well. It is a well-known fact here in the US that LASIK causes permanent dry eye in some patients. Are the doctors denying this? You can find studies reporting that if you Google or even search on Pubmed: http://www.ncbi.nlm.nih.gov/pubmed/

      Here’s an example, but I can only get the abstract: http://www.ncbi.nlm.nih.gov/pubmed/27012690

      What some of us are thinking is that the aqueous layer of the tears dries up and then MGD/meibomitis shows up. In my case, I stopped producing the aqueous layer 10 years ago due to something called sicca syndrome (this also caused my to stop producing saliva). It’s a result of the autonomic nervous system not working correctly. Luckily, I got about 50% of my tears back with clonazepam as it can have a side effect of causing excessive salivation, which often causes some tears, as well. Then, I developed MGD within a year or so and had little success in treating that until I started IPLs 4 years ago and I do believe my MGD is doing pretty well as a result. I don’t do hot compresses as those just create more capillaries due to rosacea and make things worse. Also, I didn’t develop rosacea for a couple more years so that isn’t the cause of any of this, but it’s probably not helping (my eyes don’t look red, either). Lastly, I developed keratoconus–a degenerative corneal disease–about 5 years later. I had minimally invasive corneal surgery via a clinical trial for that disease 4 years ago and then completely stopped producing my aqueous layer within a couple of days and can’t get it back. The surgery likely did something to my corneal surface as that can affect tear production.

      Like you, I’ve tired lots of drops, etc. and my eyes just hurt all the time. I also sleep with my eyes half-open which doesn’t help things. I have to wear huge, scleral contact lenses (RGP-type) in my eyes in order to see to drive and get out, but it’s just torture and I have to use Systane gel drops every 20 mins or so which make my vision even worse! I just use lubricating ointment the rest of the time. I stay away from steroids as they give me side effects, don’t help, and are dangerous to me as I have a connective tissue disorder and they thin connective tissue (be careful, please). The only hope I can give you is that there are a lot of new medications that are being studied for dry eye–especially due to corneal damage. Well, that is via the FDA in the US and we are the last to get anything approved so there’s probably more hope overseas. I wish I could add a link to prove that, but you can probably find more info on Pubmedor or via the clinical trials on http://www.clinicaltrials.gov. You can see some US trials here, but I mainly see a lot of new trials for Restasis (cyclosporine), which doesn’t do much for me: https://clinicaltrials.gov/ct2/results?term=dry+eye&Search=Search.

      So, this is what I’m waiting for as I’m a lost cause I’m afraid. I really hope you can continue to work, especially since your boss is understanding. I was already disabled from my genetic connective tissue disorder which caused all these issues for me, but the dryness and inability to wear lenses in my eyes for long periods has limited my life even more, so I really do understand how awful this is. I have had a few people from NZ on this thread, but am not sure if they’re still following. I’m not blogging anymore, but if anything new comes out in the US that works, I will try and remember to post a link to it on here. Also, someone with dry eye who posted had success with Lacrisert, but I don’t think it’s available in NZ and the reviews are mixed on the forums. You may want to look into them. They wouldn’t work for me due to my scleral lenses, though.

      Best wishes to you and I do empathize with your situation. Hang in there…
      A 🙂

  9. Have you tried Scleral contacts? They might be magic for you. They keep your corneas under water all day. They’re specifically indicated in dry eye cases like yours. It sounds like the CXL procedure killed your corneal nerves so there’s no feedback for baseline tear production. With permanent nerve damage, sclerals are essential.

    • Yes, I’ve only worn scleral lenses (Jupiters) to see since I had CXL in 2012. I wrote about the experience a few times on my blog. I got my 1st pair about a year after surgery and they just kill me. It’s not the fit and I’ve seen many lens fitters, but rather the rest of my eye and conjunctiva being so dried out that makes them unbearable. My eyes are horribly bloodshot around the lenses within a couple of hours as yes, only my corneas are getting the saline bath. If I walk around rather blind with non-lanolin ocular ointment in my eyes, I can forget about my eye pain for about 20 minutes at a time, but that’s as good as it gets. I’ve tried so many brands of scleral lenses and even the huge ones were worthless and gave me poor vision. I feel like someone is pointing a hot hairdryer on my eyes and just dread having to put my scleral lenses in to get to an appt, etc. My newer lens fitter recently did the new test on me that maps out your tears and glands, etc. (I’m not sure what it’s called but it’s the same machine that does my topography). I already had sicca syndrome pre-KC from Ehlers-Danlos due to autonomic dysfunction but used to get by via clonazepam and 1 vial a day of TheraTears Gel Drops. Clonazepam makes me produce saliva and tears, the latter to a lesser extent, and is simply a side-effect of the medication for some. That was until CXL, however, and I am the rare bird that had massive progression 4-years post-op, likely due to Ehlers-Danlos. Anyway, per the test, I look totally normal despite having severe dry eye, meibomitis (I get IPLs as I also have rosacea) and so forth. So, I am really an oddball and my doc thinks my stretchy eyelids due to Ehlers-Danlos aren’t spreading the tears I have based on the test using stains. I’m not sure how they used to work, however, or why CXL made things go from bad to beyond worse in terms of the stretchy eyelid theory (like loose windshield wipers). Anyway, I believe my doc also suspects nerve damage like you mentioned or some sort of issue where I feel the dryness much more than most, even though I do have dry spots all over my corneas. I hope that made sense and thank you for your comment and thoughts. My doctor and I are rather at a loss at this point, although he wants to try a new lens next week and see if the thinner edges help at all, which I doubt. I would love to meet these Sjogren’s patients who feel great with scleral lenses as every eye doc says I look like I have Sjogren’s but I’ve tested negative twice (and don’t feel I have it). Dreaming of being able to wear glasses…

      • Ever tried:
        Oasis brand lubricating drops
        Doxycycline tabs orally for a few weeks or months
        MeiboFlow or Lipiflow
        Omega3 like from PRN for 3 months
        Scleral lenses made of “optimum” material with HydraPeg coating (this is brand new and keeps the lens crazy wet all day)

        When your doc squeezes your lids, what do your meibomian glands produce- clear tears, thick white paste, or nothing at all? If it’s thick then you need the heating stuff and doxycycline. If it’s clear, you need omega stuff. If it’s dried up, are the glands all dead? Has your doc transilluminated your kids to see if the meibomian glands are even still there? If they’re all dead and gone, then most of the restorative therapy is a waste of time, and we’re looking for lubricants. Can you reflex tear from your lacrimal gland?

      • So, this involves both an OD and an MD at 2 different clinics (the latter for IPLs). The new test I had that I mentioned showed all my glands so they are all intact due to having IPLs for 5 years. At first, it was like “Crisco,” but now I only get IPLs every 6 mos and it just starts getting thick at around month 5. Yes, oil always comes out but at month 6 it is thicker (but acceptable). I feel better for a couple days post-IPL and then am back to normal, but it helps with my rosacea a lot so it’s worth it. I cannot take omegas due to very easy bruising (purpura/petechiae) from Ehlers-Danlos syndrome (EDS). I used to take omegas from my MD and then went OTC and was taking a double dose of krill oil and it didn’t do much and I would get black eyes that took weeks to go away and my rheum told me they were blood thinners and not for me. I still get subconjunctival hemorrhages in my eyes due to vessel fragility from EDS. I have tried Oasis which did nothing. I traded Restasis for Xiidra and got worse so stopped it. It was too expensive, regardless. I do IPLs vs LipiFlow, etc. as I have also have ocular rosacea and it cauterizes all the capillaries so more effective and that’s costly enough. I actually have 4 eye docs in total (1 is my corneal surgeon in CA) and those who are interested in MGD all agree on the IPL approach. Doxy makes me feel sick and I don’t want it even at a low-dose. I’m not sure what you mean by reflex tear. My eyes are bone dry. They only tear when I get an IPL and my glands are expressed which I presume is due to the pain. I can cry but the tears sting. Before I started IPLs, got KC, and had CXL (this all happened around the same time), I ues to have eyes that would water horribly when it was cold but my eyes were still dry. I’m not sure if that stopped due to CXL or IPL, but it was so bad I couldn’t have my lower ducts plugged as tears would would just spill over my lids.

        Btw, my mother has very few glands and a Dx of meibomitis, etc. and does not need to use ointment or much of anything. Her eyes look reddish, unlike mine (unless I’ve over-worn my sclerals), but it doesn’t affect her daily life much. I think the root cause of our issues are not the same, although I inherited EDS from her. She was on doxy (Oracea) and it did nothing and gets LipiFlow and does hot compresses as she does NOT have rosacea and nothing helps. She has some vision issues, but not KC. So, I am rather of the mindset that this is all a lost cause. Oh, forgot to add the my OD had the idea of getting my last set of Jupiters made out of some very slippery material. It may be what you are referring to, but once again, I didn’t notice much of a difference. I am also using Cliradex foam on my lids now, as well. I have seborrheic dermatitis and a topical med for demodex mites totally cleared it up, and helped with my rosacea, so I presume I have them in excess in my lashes. I see my doc next week for this year’s sclerals and he has a new plan. I have really given up and would like to just get Jupiters with prism as I have also developed very apparent strabismus when not wearing my lenses due to my poor vision. It’s mild with my lenses in but I have less strain when I have prism placed in front of my eyes in the office. I also have a 5th (?) nerve palsy which my OD discovered and seems to be more common in those with EDS. So, my left eye naturally looks down and out a bit due to that and now is really turned due to being legally blind since last summer. Luckily, my OD likes complicated patients. Thanks, Dr. Colton. Feel free to pass on any other thoughts. I have really given up on this and think I must just be too complex due to EDS or whatnot.

      • Btw, the eye in my gravatar is my left eye from 2011 or 2012. That is the eye with the 5th nerve palsy and is now legally blind and is turned way out to the other side when my lenses are out. I had epi-off CXL in 2012 when that eye was 20/60. Rather depressing.

      • So if the collagen in your corneas were ruined, maybe you could benefit from a corneal transplant. Maybe not full thickness, but front 2/3rds, to get some non-ehlers-danlos collagen in there. Sometimes the nerves grow back from the original eye into the transplant. Usually they delay transplants until you’re severe, and now you’re severe. The vision loss- is that from corneal scarring?

        A similar but less invasive procedure is the placing of stem cells on your Cornea to grow in and revitalize the epithelium. Cryo-preserved is prokera brand. Dehydrated is BioD or Aril. This would not do much for your collagen, which is why I suggested the thicker 2/3 or 100% Cornea transplant.

        Ever talked those options? Again, sometimes these surgeries don’t turn out perfect so we don’t do them unless you’re bad. And you’re bad.

      • I have been told by multiple corneal specialists that I would probably not be a good candidate for transplants due to EDS as it causes poor healing and scarring and yes, they all say about everything goes wrong with transplants. Additionally, stromal cells turnover in a few years so I think my body would just replace them with cells with faulty collagen V due to EDS. I have read some terrible transplant stories online from people with EDS and KC so that gives me pause. I also think rejection would be higher due to my collagen (everywhere) being different, but I don’t know that for sure.

        I wouldn’t say the collagen in my corneas is “ruined.” I’ve had faulty collagen in my corneas and body my entire life and didn’t get sick from EDS until my late 20s and didn’t have any issues with my corneas/vision until my late 30s when the KC developed. I can see fairly well with scleral lenses, so the severe dry eye is the bigger hurdle since I could get transplants and still be stuck with RGPs like so many others. I think transplants are more appropriate when you can’t get correction anymore.

        My left eye is staged as severe since last year but my right eye is still staged as moderate 5 yrs post-CXL (it just isn’t great vision w/o lenses). I have had more vision loss in my right eye since this summer but it is not from KC and this has happened before and no one knows what the cause is. Ex., before June, I could read words on the TV w/o my lenses and now the TV is very ghosted in general and I can’t read anything. My laptop and cell phone are much harder to see now and anything printed is about impossible to see. I am hoping I don’t get corneal hydrops, but if that were to occur then I would probably get a transplant. I get very sick from all steroids, ocular included, and am allergic to Pred Forte and don’t want to go near that stuff again. So, it’s just not for me and as I’m already disabled and live a very limited life due to EDS, KC was more like the icing on the cake. I’m not going to get my career back if I can see again, but it would be very nice. And, I would still have sicca syndrome and meibomitis, even though I presume I’d go back to having some tears in my eyes like pre-CXL.

        I have not heard about the stem cells but my corneal surgeon in L.A. (who does epi-off CXL) is at the forefront of everything. I saw him last year when I had the rapid loss of vision in my left eye and he didn’t recommend anything of that nature. This sounds very pricey and as I cannot work, I’m afraid the CXL surgery was the last experiment for me.

        Back to waiting for science to catch up (and the FDA to hurry up)…

      • Thank you for sharing your thoughts on my complex ocular condition; I really appreciate it. I have replaced all my local docs since I had this blog and feel I am in much better hands now. I’ll update this thread if my lens fitter finds a miracle lens for me. He never stops trying between my dry eye and my KC.

      • Then definitely use the Scleral lenses made of “optimum” material with HydraPeg coating (this is a brand new coating and keeps the lens crazy wet all day). HydraPeg.

      • Thank you. My lenses are from this spring and I believe are made with the Hydrapeg coating (my doc said “super slippery” and that’s all I recall). He wants to try a different brand with very thin edges to see if I notice them less, but he has to have them make the centers very hard as apparently that is why I can only see via Jupiters. I know he will stick with the “super slippery” material. These lenses (forgot the brand) don’t come with prism, so if they don’t feel better, I want to try the Jupiters with prism just to see if I can see a bit better. I come in around 20/30 with both eyes with sclerals (I think…so many changes) at my doc’s office, but can’t read the numbers at the DMV due to the resolution or white on black. I can get a license with a doctor’s note so that’s good. I think the high-resolution charts are not a good representation of how KCers see, however. I can see TVs, phones, laptops, etc. much better than anything else. I’ll update this when the long fitting process is done in 2018. I also forgot to tell you that I use Azasite on my lids nightly but e/o month. Thanks again for all the free info. It will help my search-engine crowd for sure. 🙂
        P.S. Took a break from my lenses today so hope I don’t have too many typos! It’s amazing I used to write such long posts sans lenses a few years ago…the screen is such a mess.

  10. Hi Dr. Colton,

    Here’s my update: the new lenses I’m in the fitting process for are called ABB Optical–ICD Flex Fit Sphere Visitin+. They also have the HydraPeg coating like my current Jupiters and some other coating I always get (drawing a blank but it’s so you don’t need a protein remover I think) and the centers are being made more rigid as that seems to be my issue with other brands via past lens fitters, i.e. I see great with the fitting lenses but then can’t see at all when my real lenses come in as they aren’t as rigid.

    As you probably know, these lenses have a different edge which my doc hopes will help with comfort. I think they do to an extent, but I could only wore them for a bit during the day as I couldn’t see well at night in them and it was very hard to drive. At my second visit, it appeared I was getting too much correction and my doc said that could explain the good distance vision at all times but night (due to headlights, etc.) and I also prefer 1 weaker lens so I can see close up so I am hoping the 2nd pair will be much better all around. I have had no headaches, despite all the strabismus, so that is another plus as these lenses don’t come with prism and I don’t want to deal with glasses (prism) over lenses due to the hassle and cost.

    Lastly, and this is still pending, but it seems my KC is progressing in both eyes now and I’m currently over 5 yrs post-CXL. My ophthalmologist will run all the tests again next month to see what’s going on as there is a change in both eyes since my last appt 7 mos ago. I have had strange scans before and now I am wearing my lenses 10-12 hrs a day vs. 4 hrs a few days a week and with EDS, my eyeballs seem to be very malleable or so suspects my CXL surgeon in LA where I had epi-off done so it’s possible that could be altering my scans and vision. The odd thing is I still see the same with 1 lens, but am worse with another so who knows. If I am getting worse, then 1 eye held for about 4 years and the other for about 5 years post-CXL. We shall see. If I end up in transplant land, I will likely have to go back to LA if I want DALK, so I really hope my corneas hang in there for me (or the big cure comes soon). 🙂

    Thank you again for your input into my complex case,

    • Have you considered a cryo-preserved amniotic stem cell graft like Prokera? Just last year they published in Journal of Ophthalmology “Corneal nerve regeneration after self-retained cryopreserved amniotic membrane in dry eye disease.” With one treatment for 3-4 days, they got 50% increased central corneal nerve density at 3 months out. If it was me, I would definitely try this, perhaps first epi-on, maybe again epi-off. https://www.hindawi.com/journals/joph/2017/6404918/

      • Thanks and I think you mentioned that before. The study sounds promising from what I read, but I know I would have to go to LA again and that’s a whole other debacle in itself, and then we have the steep price tag that corneal specialists charge for trials (especially in LA), just like with CXL. I feel I should be paid considering all the damage CXL did to my eyes! Anyway, if it comes my way and is affordable and if I can ever get a ride, I would try a stem cell graft, but I am really hesitant about things w/o long-term studies due to my experience.

        Per redoing CXL, I already saw my surgeon in LA last year and while I went to redo epi-off in the eye that had rapidly progressed 4 yrs post-CXL, he didn’t do the surgery after I went all the way there as my left cornea was in the mid or low 300s (?) in terms of thinness (I had sent a pachymetry showing that) and he wouldn’t be able to plump it up enough to do epi-off. My surgeon is not a fan of epi-on but will apparently do it on occasion if that’s all he can do, but he didn’t want to do it on me. He felt my Ehlers-Danlos had thrown a wrench in things which I believe is probably accurate. So, I guess CXL is out and I think it will thin my corneas even more just like last time so I really don’t want to go that route even if another doc were willing, but the local docs doing epi-off go by the book and won’t go near me. Anyway, per my scans from last month, my left eye is now in the high 200s and my right eye is somewhere in the 300s, but lower than 7 mos ago, so I think redoing CXL is just off the table.

        Thanks for the link. My local corneal specialist does those autologous serum drops and I think has more of an interest in epithelial issues in general so I will see if he has heard anything about trials coming to our area. We have few corneal specialists here and I like my current doc much more than the last, even if he’s not a KC expert. All of the good lens fitters refer to him, as well. He does stay current on all the studies and seems much smarter than some docs I’ve seen here so I do feel I am in good hands. I have not tried the serum drops as he doesn’t use them for dry eye and all the blood work and office visits and cost didn’t excite me. I also recall that my former corneal specialist was going to put an amniotic membrane (or something like that) over my cornea if my epithelium didn’t start healing post-CXL as it had not grown back in the normal time frame when I finally made it back home, but I dumped gel drops in my eyes non-stop for 2 days and got it to regrow. I don’t think that had stem cells, though. The super slow healing was probably where things went wrong, aside from the central scarring I got post-op.

        Thanks again for the great info!

      • Bruce A Colton OD says:

        I did not mean to get cross-linking again. That would be crazy. I meant epi-off stem cell amnion graft. Amnion grafts on the cornea are not experimental. They’ve been mainstream for 5-10 years, with multiple manufacturers. They make things heal that wouldn’t otherwise, like epithelium, or nerves, or even get rid of corneal scarring. What I would consider if I had your eyes is to get my doc to scrape off some of the central corneal scarring, as long as it’s anterior 50% of cornea, and then lay on a prokera amnion membrane for a few days. It should heal clearer with less scarring, and with more nerves for dry maintenance of baseline tears. Every doc should have easy access to these membranes, both dry (BioD, Aril), and wet cryopreserved (Prokera).

      • Honestly, my big CXL surgeon was going to redo my surgery if not for the thinning when my left eye progressed. My local doc was the 1st to recommend it and send me back to LA. Scarier than that was my former doc who suggested I get PRK after I had CXL done, even with all the damage, some of which he didn’t tell me about (my former lens fitter told me about the scarring). I wrote about the PRK on here as the only doctor touting it had a conflict of interest. I can’t even imagine! It’s sketchy here and you have to be a very educated patient and weed out the bad docs.

        OK, so the amniotic membrane is what my former corneal doc was going to put on my corneas (or maybe just 1?) to get the epithelium to heal. That was 6 years ago.
        I thought this was something new via a clinical trial per the link you sent. How effective is it epi-on? I can’t take narcotics and having my epithelium removed caused the most excruciating 2-3 days of my life. I honestly can’t have it removed again due to that as it was like acid was in my eyes and then shards of glass (I also had both eyes done at the same time).

        Btw, I asked my lens fitter about this today since I had an appt but he wasn’t exactly sure what I was talking about so I am emailing him the link you sent as he likes to be current on everything and is always at seminars and whatnot. He said he recently learned about drops made from stem cells that he thought were FDA approved (but probably not covered by insurance yet) and wanted to see about what you’d mentioned. I will bring this up to my corneal doc and see what he thinks. I would have to wait until I could get family to come my way for a week it sounds like as I would be down an eye and that could be near impossible to get someone here and/or for that long. Do you know about the drops at all? That sounds much easier. Thank you, again.

      • It’s placing an amniotic membrane on the surface of the eye. It’s completely covered by all major medical insurances. CPT code is 65778. If you just put it over epi, it helps epi heal. If you first scrape off scarring then put it on, the cornea heals more clear, so less scarring, so then you can see better. This is not super new. Not experimental. This is established, covered, functional treatment. I’m happy to answer more questions about it. For you is probably start with a prokera just over the cornea to see how you tolerate it for 2-3 days. If it’s ok then I would consider scraping off some scarring and covering with prokera again. On another note, have any of your docs discussed potential benefits of corneal transplant?

      • Thanks for the info. I now wish I had just gotten the amniotic membranes post-CXL for my epithelium as we’d know if it would help, but I didn’t want patched eyes so doused my eyes for 2 days to get things to heal.

        Here’s the reply from my OD regarding this since he knows my eyes and situation very well (I did mention you were referring to using this epi-off):

        “I have been using Prokera for the last 3 years or so but I think it would have limited effect for you unless we started to see epithelium break down, which we have not. I am looking into the drops which are called Regener-Eyes. Dr B is going to a conference this weekend so he is going to ask how they have been working around the country, I don’t know anyone local who has experience with them it looks like they are dispensed directly out of the doctor office to the patient.”

        So, I will trust that as my doc goes above and beyond for me. Per corneal transplants, I really do not want to go this route yet and my OD is the most concerned about them, which I think is based on what he’s seen and also my EDS. I did mention it to my corneal doc last month since we are unsure if I’m progressing and he said maybe, but last time was shaking his head no and saying that everything that can go wrong often does, but those are the patients referred to him. He doesn’t do many transplants and would have to send me to LA for DALK for sure, and having to travel for surgery doesn’t excite me. I think I would prefer to do a transplant as a last resort due to slow healing, major side effects from Pred Forte, etc. I think my EDS just messes everything up.

        I should find out about those drops at my next lens fitting appt. and can let you know, if interested. But, you may already know about them (my understanding is these are new).

        Thanks again for your help and info…

      • It sounds like I’m in about the same spot as your O.D. I also just heard about RegenerEyes and am researching it. It’s basically amniotic fluid eye drops. So very anti inflammatory, pro healing. But they are not covered by insurance so it’s $200/bottle which lasts 2-4 weeks. But they’re meant for acute healing only. Not for chronic use. Your OF should look up the studies of prokera used to get rid of corneal scarring. I don’t know if you’re a good candidate as your corneas are thin. But it sounds like your OD thinks prokera is only for epithelium healing. It actually prevents strongly scarring during healing. RegenerEyes might be worth a try to see if nerves grow back, instead of prokera. It’s basically liquid prokera.

      • Interesting. Well, at least he gets a copay for dealing with my eyes! Yes, it sounds like he uses Prokera for epi healing only from that email. My left cornea is so thin that I am worried about touching it, as well. Also, I could see 20/40 post-CXL (or at least on a high-res. eye chart as those are rather like cheating) with either eye even with the central scar so it is not why my vision is so bad in my left eye…that is from the KC progressing 1.5 years ago. Actually, the left eye was overly flat post-CXL and technically didn’t even have KC anymore and the right improved a lot but still showed KC on topo. I needed a scleral lens in my left eye, as well, due to the scar causing KC-like vision, however. But, those were the better days. Perhaps my doc knows this and isn’t thinking Prokera is for me for that reason (the scar not being a huge issue)? He wasn’t my lens fitter back then, but knows my history well. I wish I had known him then as he would have caught the progression unlike the OD I was seeing for new lenses who didn’t notice I went from 20/40ish to 20/200 in a couple months. :/

        Thanks for the price/info on the drops. Too much for me unless it’s guaranteed to make my eyes stop hurting with 1 bottle. Hopefully the other OD who is going to the conference will find out if it could help me, but someone else would need a patient like me I presume. If it is truly just a liquid version of Prokera, then my doc should be able to figure it out. I really am lost on the nerve aspect and have no degrees in the sciences (rather liberal arts) so I will have to wait until someone knows for sure what really happened to my eyes as my OD just has some theories and my MD isn’t overly interested, unfortunately. My MD just has way too many patients due to the lack of specialists here, but is a well-educated doc who I trust. You would think my big KC specialist in LA could shed some light on the subject. Too bad we can’t get eye exams through the internet so you can see my corneas, but maybe one day. Thanks for the free info, once again. I owe you a copay. 🙂

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