Blepharitis? Dry Eyes? Neither??? Post Superficial Keratectomy. HELP!!

Eye care
1

Hi All!

I am new here and this is my first post. I’ve read quite a few other posts however on here and know this is an active and supportive community. I could certainly use your help!

I’ll try to keep this a short as possible while hitting all of the important facts…..

I’m 35 and until last summer I have never had any eye issues, I didn’t even have an optometrist or ophthalmologist and had 20/15 vision in both eyes. Then my little daughter accidently hit me in the right eye with a yogurt pouch and caused a corneal abrasion. I want to an ophthalmologist and within a week or two all was back to normal. Then again at the end of January, unbelievably, my daughter got the same eye (right) with a book this time, a new corneal abrasion and back to the ophthalmologist. Again, a week or so later, fine. But…about a month later, the symptoms had come back over night on their own, over the course of the next month they waxed and waned and the ophthalmologist said it was recurrent corneal erosion and I underwent a Superficial Keratectomy (about 2 ½ weeks ago now).

NOW HERE IS WHERE I NEED SOME HELP/THOUGHTS/GUIDANCE. I saw the ophthalmologist again last week (about 2 weeks post op) because BOTH eyes were uncomfortable and did not feel right (I had complained about the OTHER eye for about 6 weeks before the Superficial Keratectomy as well but they never saw anything when looking at it with the slit lamp). The other (non-acute injury) eye would always feel like there was something in it when I went to sleep or tried to rest it. Both eyes felt inflamed, sore, and gritty hence I went back as it was getting worse with time. The non-acute injured eye actually feeling the worse of the two.

Up until now the ophthalmologist has been great, but here is where some disappointment set in. After looking at the eyes, and a brief 5 minute conversation, in which he talked about Blepharitis and dry eye, and then proceeded to say it could be lifelong I was ushered out and told to follow up as needed. 6 months ago I had 20/15 vision with no eye issues at all and now I may have a lifelong condition, had a 5 minute talk, and follow up as needed!!!!! I don’t even know what I have or if there was an official diagnosis or not – Blepharitis or dry eye, or neither???? He told me to wean off eye drops (lubricating, preservative free is what I was using) and use a warm compress, that’s it!!! No “let’s get ahead of this”, take this antibiotic, nothing!!!

He seems almost uninterested now that the “sexy” surgery/injury part is over and I don’t want to become a “frequent flyer” and feel like I am not wanted in the office.

My symptoms:

Slightly red eyes, gritty feeling (hard to describe, but like cobwebs or something over/in my eyes that can’t be removed), foreign body feeling when closing them for any period of time, sometimes blurry vision and occasionally stingy. NO “crusties” or light sensitivity however.

My actions:

Using Thera Tears SteriLid cleanser each morning, a 10-minute warm compress mask each evening and that is about it. Trying to avoid eye drops since the ophthalmologist said to wean off.

I used a ton of the preservative free drops and some prescription drops and pills post op (all prescribed), and a lot of preservative free drops during the initial corneal abrasions and subsequent erosions. Could I have lost my natural tears?

This is causing such anxiety and life/marriage stress it is not even funny (2 girls under 2 at home). Does anyone have a similar story or thoughts as to what I may/may not have or should do??? Any similar experiences?

Sorry this was so long, but I’d love to hear back. Let me know if anyone needs more info or has questions.

Thank you!!!!

2

Suggest making appointment with a different opthalmologist.

3

Travis,

I share your concerns.  Here's my story:

Nov 27, 2013 - my doggie accidentally pawed my left eye; went to a walk in clinic and was treated for a corneal tear.

Tried to deal with it tearing open for the next 8 months and then was referred to an ophthalmologist.  Continued with the ophthalmologist until January 2018....yes, that is the correct date.  Short version:

Aug 1 2017 had a superficial keratectomy on my left eye.  Surgery was horrible (not to mention I waited 4 years to get it - WTF), had severe pain and the ophthalmologist never put a contact lens bandaid on it.  I had to ask and I waited 2 hours in severe pain to get in because he was in surgery.  They couldn't dispense a pain killer either until they had his say so.  (I have dealt further on this matter with the hospital) as the whole process was abysmal to say the least.  I was not given an after care instructions either......

Since then, I stayed with the ophthalmologist until January 2018 and then dropped him once I knew I was healed.

Current treatment/actions:

Since then, I, like you, have gone to an optometrist to get my visibility readings and I know have been told I have blepharitis and could be life long condition.  I am on doxycycline antibiotic now (2nd round), 100 mg 1x per day....daily regimen of heated heat mask in the morning for 10 min, followed by a wash of systane wipes.  Today, I called my gp and I'm going in to request an appt to another ophthalmologist far away from the town. I also plan to contact the regulatory body to gain a further understanding on what I should expect from getting the best treatment possible. 

Please keep me updated on your progress and I can update you on mine.  I'm still trying to figure out how this can all happen this way since it is 2018 and it seems like opthalmic practices are going backwards, or are these folks more focused on rewards in terms of business $$$, rather than patient care.  I just don't know what to think.  Obviously, I can say so much more here, but I think our best bet is to see another exceptionally qualified ophthalmologist.  Good luck.  My eyes are bugging me as I write......

4

One more point.....if anyone EVER gets any type of injury to their eyes....suggest you always go to EMERGENCY at a hospital and see an Ophthalmologist....chances of healing are much greater within the first 24 - 48 hours  (my bad that I didn't)......otherwise, it could all turn into a nightmare......

5

Hi Diana,

Thank you for your reply and kind words! I am so sorry to hear your story, there is nothing more frustrating than not having a quality ophthalmologist or not having them take your concerns seriously - as we know - this situation can be debilitating.

An update to my situation is that I went back three weeks ago because of blurry vision, this time the ophthalmologist said my eyes looked perfectly health and he wasn't seeing anything. He chalked my blurry vision up to astigmatism due to my eye still healing from the Super K. 

Adding more, up until a week ago, my eyes were starting to feel better and I though for awhile maybe I didn't have an ongoing issue with MGD or Blepharitis or something similar. Then I woke up one morning and bam, like we were starting the nightmare all over again. In the last week or so there has been some waxing and waning but not "symptom free" like I thought I was on my way towards. Possibly, coincidentally, the overnight that the symptoms returned I had a humidifier running in my bedroom which I had not done in awhile. I have not used it again since that night. A connection? Who knows. 

I am still at a complete loss, doctor doesn't see anything and probably thinks I am crazy but I know very well my eyes are not right and are extremely uncomfortable. I am confused as to why they began to feel better and then the other shoe dropped again.

Any thoughts? Any update to your situation?

6

Hello Travis1119,

Thanks for writing me back.  I do have a question for you.  Do you work with plants, or anything?  The reason I raise this to you is that my instincts were yelling at me.  I called the optometrist as my eye condition was worsening.  At that point (Apr 17, 2018) I was told it could take a year or longer and Restasis (corneal transplant drug) is probably where I'm heading, and maybe having my eye glands scraped by a specialist to the tune of $1500.00 and that we would discuss this Apr 24th at my next appt. WTF!   I have been using the humidifier.

The short of it is I went to my GP on Apr 18and she swabbed my eye to send in a sample to determine if blepharitis was allergic, viral, or bacterial (since optometrist didn't do this).  She also referred me to a new ophthalmologist.   I went to town on researching the condition and switched to Theralid to cleanse and I love it, along with their drops and vitamins.  

Then, while at home, I kept thinking, what is different in my home since I was diagnosed with blepharitis and MGD.  And there it was....a friend brought an anthurium plant to me as a gift about a month ago and here I was touching it, trimming the leaves, etc and well the plant is toxic and I'm pretty sure I didn't wash my hands after touching the plant and then I was  probably touching my eyes..  The plant will emit allergens if you stand near it as well and I am very, very sensitive so I believe this plant was affecting me.

I was lucky to get in and see the new ophthalmologist on Apr 19.  He spent 1.5 hours with me and told me I DO NOT HAVE BLEPHARITIS, OR DRY EYE, OR MEIBOMIAN GLAND DYSFUNCTION (MGD), nor are my tear ducts clogged.  Since meeting with him, my eyes are completely better and he advised to continue with the regimen I am following (Theralid cleanser, eye drops and lacrilube at night).  My eye still runs a bit.  I dumped the Doxycycline, Systane Wipes, Tobradex ointment and Alrex drops and Bruder Mask.    My left eye still runs a bit but my right eye is completely normal.  The plant was thrown out as soon as I figured it out.

I called the optometrist and advised her about all of this.  In fairness, she wasn't told about the plant, but I don't feel she is qualified to treat me as she misdiagnosed me.  In hindsight I think a good optomestrist or ophthalmologist should know to ask about changes in a home and especially plants!. The ophthalmologist advised me that when an optometrist notices inflammation they typically determine blepharitis.  I will only see her for vision care/glasses now.  I see the new ophthalmologist in a month and I am delighted he helped me.

My recommendation to you at this point is to find another ophthalmologist and go for a 2nd option.  You owe that to yourself since you are dealing with your eyes.  I have zero tolerance for error in this regard.  Think about if anything has changed at all in your home.  Also, you may not realize it, but sometimes we have sensitivies or allergies to the drops or ointments they are giving us.  Systane wipes are too harsh for me while Theralid is soothing.   I hope some of this update may prove useful to you in some way.

Best wishes to you.

Diana

7

oops, I meant go for a 2nd opinion for sure!

8

Hello Travis1119,

Thanks for writing me back.  I do have a question for you.  Do you work with plants, or anything?  The reason I raise this to you is that my instincts were yelling at me.  I called the optometrist as my eye condition was worsening.  At that point (Apr 17, 2018) I was told it could take a year or longer and Restasis (corneal transplant drug) is probably where I'm heading, and maybe having my eye glands scraped by a specialist to the tune of $1500.00 and that we would discuss this Apr 24th at my next appt. WTF!   I have been using the humidifier.

The short of it is I went to my GP on Apr 18and she swabbed my eye to send in a sample to determine if blepharitis was allergic, viral, or bacterial (since optometrist didn't do this).  She also referred me to a new ophthalmologist.   I went to town on researching the condition and switched to Theralid to cleanse and I love it, along with their drops and vitamins.  

Then, while at home, I kept thinking, what is different in my home since I was diagnosed with blepharitis and MGD.  And there it was....a friend brought an anthurium plant to me as a gift about a month ago and here I was touching it, trimming the leaves, etc and well the plant is toxic and I'm pretty sure I didn't wash my hands after touching the plant and then I was  probably touching my eyes..  The plant will emit allergens if you stand near it as well and I am very, very sensitive so I believe this plant was affecting me.

I was lucky to get in and see the new ophthalmologist on Apr 19.  He spent 1.5 hours with me and told me I DO NOT HAVE BLEPHARITIS, OR DRY EYE, OR MEIBOMIAN GLAND DYSFUNCTION (MGD), nor are my tear ducts clogged.  Since meeting with him, my eyes are completely better and he advised to continue with the regimen I am following (Theralid cleanser, eye drops and lacrilube at night).  My eye still runs a bit.  I dumped the Doxycycline, Systane Wipes, Tobradex ointment and Alrex drops and Bruder Mask.    My left eye still runs a bit but my right eye is completely normal.  The plant was thrown out as soon as I figured it out.

I called the optometrist and advised her about all of this.  In fairness, she wasn't told about the plant, but I don't feel she is qualified to treat me as she misdiagnosed me.  In hindsight I think a good optomestrist or ophthalmologist should know to ask about changes in a home and especially plants!. The ophthalmologist advised me that when an optometrist notices inflammation they typically determine blepharitis.  I will only see her for vision care/glasses now.  I see the new ophthalmologist in a month and I am delighted he helped me.

My recommendation to you at this point is to find another ophthalmologist and go for a 2nd option.  You owe that to yourself since you are dealing with your eyes.  I have zero tolerance for error in this regard.  Think about if anything has changed at all in your home.  Also, you may not realize it, but sometimes we have sensitivies or allergies to the drops or ointments they are giving us.  Systane wipes are too harsh for me while Theralid is soothing.   I hope some of this update may prove useful to you in some way.

Best wishes to you.

Diana

9

Hi Diana,

Thanks again, this is all very encouraging to hear that progress can be made. I have to be honest that one of my biggest concerns is not knowing what I am dealing with. Like you, I have been told it is probably MGD, Blepharitis, dry eye, etc. and then on another occasion told my eyes look perfectly healthy with no sign of any of that! So which is it? Do I have it or not? It is frustrating because until you know what you actually have how do you know how to treat it??!! Some times it is worse in the morning, other times evening, other times during the day - there is no rhyme or reason.

Additionally, it is so hard to know which way to treat it (whatever "it" is). There are literally hundreds of products and daily regiments you can do and everyone recommends something different, it is a bit overwhelming. Now I question why did I start to feel better and then it got worse again overnight one night suddenly? Was it luck I was feeling better, was it something I was doing and then stopped (I don't feel like it was), will the ups and downs be forever? 

I don't have the eye crusting so typical with Blepharitis, and it is not always worse in the morning which I am told are two big signs.

Currently my daily regime is warm compress mask for 10 minutes in the morning followed closely by eye cleansing with Sterilid foaming eye cleanser and then an Ocusoft cleaning wipe before going to bed. I really try to limit use of lubricating drops during the day, even the preservative free ones. I guess I have this thought in my head if I can not put stuff in my eye it will restore to its "natural balance" and I'll be cured, 

But you are right, ultimately what I need to do is get a second professional opinion. I just dread doing that and having yet another vague diagnosis or unproductive appointment that leaves me feeling worse than when I walked in. 

Good luck to you and please keep me posted!

10

Thanks for the update.  Where your eyes are concerned, listen to your instinct and turn over every stone until you get the right result.  You have 2 little ones at home.  Are you using scented drier sheets, do you have air freshener plug ins, does your wife wear perfume.....I am very, very sensitive, plus I have birds at home (a cockatiel and a budgie), so I don't have ANYTHING scented.  You may have developed an allergy.  At best, you need an exceptionally qualified professional diagnosing you.  Vague is not good enough, so keep going until you find someone who can help you.  You can develop allergies to certain things at certain times in your life too.....I have learned that for sure.  I dumped the heat mask.  I know my eye will tear for perhaps up to a year so Aug 1, but my cleanup and everything is getting better since I dumped the plant.  Let me know how you make out and I wish you all the very best!  Listen to your instincts!

Diana