Recurrent Corneal Erosions - Please help with my treatment!!

[jmchugh]

Hi everyone! I am a 33 year old woman experiencing recurrent corneal erosions for the last 6 months. This has been by far the most miserable time of my life. Every night I have an erosion I just lie awake and cry.. and wonder why this keeps happening. Also, will I go blind? The doctors say I won't but how do they know for sure? I started getting these erosions 10/11 and they started off about once a week and then in january I started getting up to 4 a week. They always happen at night and it is always the most awful pain imaginable. Up until last night, I have gone 9 nights without one. Of course because I was celebrating, I had a minor erosion last night.. my first minor one.. all others have been full blown erosions.

My last specialist said that I have anterior Basement membrane dystrophy. My other specialist says that I have meibomian gland dysfuntion. I have seen 4 specialists.. I still dont know about any of them.. what do you look for and how do you find someone that you trust when they all tell you something different??

I had my first child 3 years ago.. so I was pregnant for 9 months, nursed for a year, got pregnant again and then nursed for a year. The month I stopped nursing is when this all started happening.. did something change in my body then that set these erosions off? After reading some of these blogs, it sounds like issues with your body come out with your eyes, so I am going to call my internist to set up some blood work.. but what will he even check for?

With all of this being said, I am seeking your help with your advice on treatment.

I just tried the temporary plugs and they worked for a day until they fell out. I am scheduled to get LipaView this friday to help open up my oil glands.. but I am scared as clearly my eyes are not healed yet.. should I still proceed with this treatment?? My doctor says that the device will not touch my eyes but I am skeptical.
Anyway, my hope with the lipaview is that my oil glands open. Then I have an appointment on Tuesday for permanent punctual ducts. I hope that with these 2 treatments, my eyes will be more moist which will hopefully prevent more erosions. What do you think?
One doctor told me to get a ProKara after 5 minutes of seeing me.. does anyone know anything about these stem cell contacts? is there even much research on the long term effects?

I have also changed my diet- no more meat, sugar, dairy, nuts.. I am trying to make my PH alkaline based.. i think that the acidy may increase my erosions. I am also taking artic cod liver. My holistic doctor also suggested Can - C eye drops and monolaurin... does anyone have experience with diet effecting the erosions? Has anyone had success with this?
Per Rebeccas suggestion on an earlier post, i just ordered Ocusoft, a rice bag and tranquileye goggles. Right now for my nightly routine, i wipe my eyes with a warm wash cloth (have been using baby shampoo but stopping that) and use an antibiotic, restasis and then oasis tears plus. If i incorporate that with the Ocusoft, rice bag and goggles, will that be enough?? And I forgot to mention that i do use Oasis Tear plus every hour and yes even during the night. Last night i slept for 3 hours and had the erosion.
With this basement membrane dystrophy, will these erosions ever subside or am I doomed for PTK?? Why is it that this is just now happening? I am healthy.. I have always drank a gallon of water a day, eat more greens than anyone I know, work out 3-5 times a week.. what am I doing wrong? I am in front of the computer for 10 hours a day.. could it be that? I just want to know what set this all off and how do stop it? I am willing to do anything.. BUT getting my cornea scraped off! Not interested at all as I don't know the long term effects..

Please help me!!! As you can see I have a million questions and am completely lost with this... Thank you in advance for your help!!

[spmcc]

I am scheduled to get LipaView this friday to help open up my oil glands.. but I am scared as clearly my eyes are not healed yet.. should I still proceed with this treatment?? My doctor says that the device will not touch my eyes but I am skeptical. Anyway, my hope with the lipaview is that my oil glands open.

I'm so sorry you're here. I personally don't have ABMD or get severe erosions so I'm going to leave the bulk of your questions for others to answer. I'd like to comment on LipiView and LipiFlow.

First, LipiView is just the step of measuring your lipid layer thicknesses on the ocular surface. It's completely non-invasive. You put your chin on a stirrup, blink normally, and some flashing lights do their thing. Nothing comes near your eyes.

LipiFlow, on the other hand, is the treatment. They insert eye cups first. Once inserted, the machine will heat the eye cups under the upper and lower lids. Then the cups perform a massage to move oils out of the glands.

I've had the treatment twice (and the assessment 4 times... my 5th is on March 31). But I would NEVER have this done if I had any erosions. In fact, TearScience (the makers of LipiView and LipiFlow) state contraindications which include:

•Ocular surgery within prior 3 months, including intraocular, oculo-plastic, corneal or refractive surgery procedure

•Ocular injury within prior 3 months

•Ocular herpes of eye or eyelid within prior 3 months

•Active ocular infection (e.g., viral, bacterial, mycobacterial, protozoan, or fungal infection of the cornea, conjunctiva, lacrimal gland, lacrimal sac, or eyelids including a hordeolum or stye)

•Active ocular inflammation or history of chronic, recurrent ocular inflammation within prior 3 months (e.g., retinitis, macular inflammation, choroiditis, uveitis, iritis, scleritis, episcleritis, keratitis)

•Eyelid abnormalities that affect lid function (e.g., entropion, ectropion, tumor, edema, blepharospasm, lagophthalmos, severe trichiasis, severe ptosis)

•Ocular surface abnormality that may compromise corneal integrity (e.g., prior chemical burn, recurrent corneal erosion, corneal epithelial defect, Grade 3 corneal fluorescein staining, or map dot fingerprint dystrophy)

Please read TearScience's website on labelling and safety: http://www.tearscience.com/physician...ng-and-safety/.
PLEASE remind the doctor who is recommending this treatment of these contraindications.

We also have a DEZ member had a horrible problem after getting LipiFlow. See his post here: http://www.dryeyezone.com/talk/showt...ght=#post67345. I'm sure Shanku would be happy to tell you more if you PM him directly.

Good luck with your treatments. I'm sure you're going to find things that help you - especially nighttime eye protection and the right drops/ointment. But, honestly, if I was you, I'd run like hell away from LipiFlow right now!

[alisonW]

Hi there - although many on this board don't like using ointments, it is the only thing that prevents me from getting erosions + also allows me to sleep through the entire night. (In fact I can even go several hours in the morning without needing drops because of the residue still left from the ointment - I use about 1/2 inch per eye. I have also used tranquleyes & quartz goggles as well as other sleep masks with gel drops but none of that prevented my erosions or allowed me to sleep all night.) All of the doctors I have seen have said that they are perfectly safe to use long term. (My favorite is Soothe ointment since it does not contain any lanolin derivatives and is also preservative-free.) I do have to order it online from drugstore.com since I can't find it anywhere locally. I didn't see you mention anything about ointments, so if you haven't tried one, I highly recommend it. (Some on the board even use them during the day the are so effective.) Good luck.

[jmchugh]

Spmcc- I knew it that it wasn't safe!! Thanks for the info. I specifically asked my doctor if my erosions would be an issue and he said no.. He also told me the machine cost him 100,000... so I am sure he is trying to get as many patients for this as possible to pay off his machine.
Alison- thanks for the tip with the ointment. I have not tried ointment yet so I appreciate your suggestion on the Soothe ointment. Is this the only item that prevents you from getting erosions? If you go one night without it, will you get one? why are you having the erosions and how long have they been happening?
Thanks again

[littlemermaid]

but what will he even check for?

Jmchugh, Endocrinology? thyroid, androgen/oestrogen/testosterone, diabetes? vit/mineral deficiency? I'm just not sure - we are thinking about hormonal changes but also deficiencies.

I am wondering if you have seen clear meibom along the eyelid margin (2 fingers gently pressed upwards under lower lashes)? You are taking cod liver oil, but I'm wondering if flaxseed oil might help more with the lipids? I really don't understand this biochemistry stuff. LM's eye probs started exactly at puberty so there's def a hormonal component to her mgd/altered lipids altho this is caused by skin/sebum changes. But the cause of this is systemic. If the meibom goes, we lose the eye surface, and spiral to surface damage.

Tear sub drops alone don't seem to do enough to protect it. I think this is why goggles help so much, esp bcos she is a long-hour computer-user too studying for exams. Are you using goggles on the computer to protect the eye surface? We noticed she barely blinks. This is also because the eye surface desensitises and doesn't prompt tear or even blinking (DEWS Report).

For info to compare, she has signs of damage like dot lesions in corneal layers after inflammation, but ophth tend to be unsure what happens there in chronic inflammation, so could be same for you. I read the cellulose bonds between sub-epithelial layers deteriorate maybe, but the ophth are never quite sure what's happening with us eg they will say 'that looks post-viral' whereas it correlates exactly with uncontrolled grumbling inflammation episodes, eg on one eye. Maybe similar to your basement membrane dystrophy diagnosis? It's a great skill examining the layers through the microscope with tiny alterations to get a view, also disorders and differential diagnoses are identified and redefined all the time, so it's worth shopping around for a confident assessment, although in some ways in the long term we are thinking this doesn't signify as much as identifying cause of inflammation and subsequent damage, unless there's a fix or it's a condition. I wish we had docs on the forum, to know where these things figure on the worry scale.

The surface erosion she gets is due to a spiral of uncontrolled inflammation which results in dry surface, also enzyme burns from infected MGs. Once we have the inflammation controlled, she has rapid improvement. LM's inflammation has a hormonal component, eg premenstrual, which sets the skin immunology over-reacting. So eliminating chemicals and allergens helps too. We are currently managing this fine by upping the steroid significantly to get control again, stop inflammation spiral and resulting surface damage, then tapering off to minimum, so I don't know how this relates to Restasis. The antibac eyedrops def help with anti-inflammatory as well as any chalazia/bacteria, altho no one is quite sure why yet (something about interrupting protease activity in inflammation). We do 2/wk when eyes are quiet; then on inflammation maybe 2/day, then tapering.

We are on a similar regime - antibac, steroid/cyclosporine, various tear subs, fish/flax oil, warm compress + hygiene (cold on inflammation), improved diet, lots of water - but also multivit + mineral supplement (difficult to get work-up in UK, we have no internal medicine specialism). Very interested to hear if they find any imbalances.

Hope some of this helps, Jmchugh. Warm greetings from UK

[alisonW]

Alison- thanks for the tip with the ointment. I have not tried ointment yet so I appreciate your suggestion on the Soothe ointment. Is this the only item that prevents you from getting erosions? If you go one night without it, will you get one? why are you having the erosions and how long have they been happening?

I think any ointment will work (I am allergic to wool so avoid all forms of lanolin). Preservative-free is always better if you are dealing with inflammation and/or any ocular allergies or use something long-term. Yes, I haven't had one in years now since using ointments at night. I used to get them pretty frequently though. I can go one or two nights without ointment but that's about it (then I use a gel drop instead but have to reapply every few hours through the night). I can only do this occasionally though since my eyes end up far drier during the day and then almost bone-dry by night time. My ersosions are due to inflammation & dryness on the ocular surface.