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So my awful opthamologist totally ignored what i had to say and instead couldnt find anything wrong with my eyes then says i have blepharitis, except i dont think so! I tried to explain to her that the few bits of crusting were dried up ointment but she wouldnt listen! I have red sore inner eyes and lower eyelids and stinging and sometimes burning. I had sinus issues so was told its an infection, but how do i get it diagnosed with a swab or culture with no discharge or bit of watering, is this possible? I was also told because my nose is sore that it could be an infected ethmoid sinus causing my eye problems and headaches eye pain etc. I wanted to rule out MGD and tear film problems, so am having to get another appointment with an eye specialist and make sure this time they listen.
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Jenn, not sure if your U.K?. But yes it costs money, but a private opthamolagist will hear you out- youre paying him!. Expect to pay £130-£200 for initial consoltation and examination, then after that approx £100 per visit.
I had a swab test with private opth simply to rule out any type of infection despite no discharge or anything, it cost £199 takes a week for results to come back, it involved gently pulling down lower eyelid and a swab with an oversized cotton stick which goes straight in a testtube. -
I've found that blepharitis is a bit of a catch-all phrase. The red sore inner eyes and eyelids indicate that you could have it, with or without the flaking. I don't have the flaking but I do have red, thickened eyelids and have been diagnosed with posterior blepharitis. Hopefully your next doctor will do a better job of examining you and explaining your condition. It's my experience that it makes it much more difficult to treat, understand and accept a diagnosis when your doctor doesn't bother to really explain what's going on and treat you like a human being.Comment
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Jenn,
It can be easy to come up with a blepharitis diagnosis, but difficult to get an explanation of what is going on. I agree with PotatoCakes, in that blepharitis can be a bit of a catch-all phrase. When I was initially diagnosed, two months after lasik, I too said that the dried up bits on my lashes were bits of ointment or eye drops. My doctor persuaded me there was a meibomian problem when he couldn't express much, if anything from my glands and my lids were slightly red.
Since my initial diagnosis I have struggled to understand what is going on as my symptoms have changed so much over the past eight months. I now do have oil coming from my glands, with relative ease. My eyes feel moist after I rub the lower lid. I have never had thick toothpaste like secretions. On the other hand I do have dried secretions in the morning and my eyes feel slightly burning. I think blepharitis can present with different signs at different times and also vary from person to person.
It is always worthwhile to get a second opinion. I also recommend using a journal to keep a record of symptoms and treatments tried. I have learned that there is no quick fix and what works at one point in time, might not work at another time.Comment
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Blepharitis is a meaningless "diagnosis" that eye docs use to get rid of people. Much like a GP is likely to diagnose every red eye as conjunctivitis, eye docs diagnose everything as blepharitis, thinking that patients will be impressed by a term they may not have heard before and miss the fact that they haven't got a real diagnosis for their money.
In fact I'm beginning to wonder if we might not be better off going to GPs as at least they are usually willing to accept the possibility that their diagnosis could be inaccurate or incomplete.Comment
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Tend to agree Poppy! If you can put a fancy name on something it's very easy to confuse your patients into trusting you. In my opinion, Blepharitis is only the symptom but presented as the 'disease' , with might I add, no cure. Not much of solution is it !Originally posted by poppy View PostJamieComment
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Yep, ancient Greek βλέφαρον (blepharon) meaning eyelid. That's all it means. What we're doing here, only, is describing which bit of the eye is affected (-itis). Although these descriptions do not identify the cause of the problem (viral, fungal, bacterial, inflammatory disease, allergy, immune disorder, more), they describe where the problem is seen on examination. But no further. The eye, a complex delicate system with lots of things happening that can't be seen, is actually Attached to the Body, ophth, so we might want to check the old notes from med school and hang out with derms, endos, immunologists, sometimes, to get diagnosis.
It is interesting how the descriptions evolve as research docs delve into diseases and describe them with new terms. The terms your doc uses are a very good indicator of how well-read on research and current on practice s/he is.
There's a paradox for a 'difficult' condition that a very good and careful thoughtful doc at the top of their game, who wants to pinpoint diagnosis, might hesitate what to call it and redefine it for a bit until they've got there. I like that, I'd rather they didn't guess. I think many of us feel we are in heaven if we have found a doc who will work with us honestly on these difficult conditions.
One of my favourite ever ophth does a nice gentle running commentary describing exactly what he's observing in detail, even shares a few thoughts on differential diagnosis for the red inner eyelids, experience managing similar cases, with the opportunity to ask questions 'what does the meibom look like on the lower left' 'what do you think's happening since last time' 'what do you think is causing this' etc. This is what we want.Last edited by littlemermaid; 06-Feb-2012, 05:42.Paediatric ocular rosacea ~ primum non nocereComment
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same happened to me... I was young and frustrated with my eye issues. They told me nothing was wrong resulting in me immediatly thinking I have to live like this for the rest of my life... break down in tears... get told to wait outside and then get told I have Blepharitis. It's a bit like the GP prescribing antibiotics when they are not sure.Originally posted by Jenn1 View Post
The NHS may be free but the amount of money I have spent over the years on things that didnt work must be clocking up into the hundredsComment
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My main concern was the fact that this woman didnt even bother checking for such things as my meibomian glands and tear film or even swab and seemed more bothered about getting through all of her patients so she could get home early.Originally posted by chattabob View PostComment
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5 minute follow up
I was prescribed steroid eye drops (Fluorometholone) because my eyes are always dry, ithcing and in pain. I wouldn't say they are as severe as a lot of people on this site. That is to say the pain is not unbearable, but I would say I am aware of my eye discomfort for abour 75 percent of my daily life.
Anyways I was prescribed this stuff without any explanation. After a week there was small improvement. In my follow up appointment I asked if I could keep taking it. The opthalmologist tested my eyes in the pressure tester thing which at the time I had no idea what it was for. He said I definitely should not continue. Later i googled the medicine and realised that some side effects of steroid drops can increase intraocular pressure. The machine which blows air on your eyes is for testing this. Obviously my intraocular pressure had increased judging by his reaction.
I really resent the fact that this medication was not discussed with me at all. I was sent home feeling unsatisfied. I could not continue with the steroid drops. I was not given a substitute. And I suspect my intraocular pressure had been increased too much and he was too embarrassed to tell me about it.Comment
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So right, I agree! How about my diagnosis of severe dry eyes....sure sounds to me like a symptom too, with no explanation at all. I produce no tears and not one Dr. want to know why???Originally posted by jads View PostComment
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You are exactly right! They get paid mega bucks and still have no passion for the career they have chosen. They get paid enough to even fake it for me, just pretend your interested. If you pretend you care or even better actually care most patients wouldnt go away so dissappointed.Originally posted by Jenn1 View Post
This is why in the past I have paid privately to see consultants as at least I get someone who takes an interest even if they are not botheredComment
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Had to butt in here because symptoms sound so similar to mine and mine are soooo much improved since finding the cause, which took about 15 years!Originally posted by Jenn1 View Post
I turned out to have a Type IV Hypersensitivity (skin allergy) to formaldehyde-releasing preservatives and a sensitivity to BAK. I also have DES which may be due to an undiagnosed systemic disorder that is still being investigated.
The formaldehyde allergy was diagnosed by a dermatologist when I specifically asked for the allergy patch tests for skin allergy at the suggestion of an allergist who was responding to a corneal specialists's suspicion of allergy as the cause of my inner lids (especially lower) being so sore, red and horribly painful. The derm didn't want to do the tests, thinking they'd be negative because I didn't have many skin rashes other than inner eyelids.
Since getting the tests and (with great difficulty) eliminating from my life the formaldehyde-releasing preservatives in my toiletries and household cleaners and the clothing and other fabrics in my home that contain formaldehyde, my eyes are dramatically better. Also dramatically better are my rhinitis/sinus problems and chronic cough that most docs thought were allergies to pollen, dust or mold (which I am not allergic to). Going off BAK helped a lot with that too, including switching to a preservative-free Glaucoma eye drop. Eliminating BAK meant also no longer using saline nasal sprays, Flonase or Ayr Nasal Gel. I use Ocean Ultra Moisturizing Gel for my dry nose and Similasin Allergy Eye Relief Drops. I rarely get a headache now.
After 3-4 months of no formaldehyde or BAK at all, I've discovered my eyes are no longer as sensitive to BAK or to fluorescein dye the doc uses to check my Glaucoma. That's a huge relief since exams at the Ophthalmologist office used to flare up my eyes badly afterward due to the drops they use. I still react dramatically to formaldehyde if exposed (reaction starts one day after exposure and last several days) but my eyes are getting less and less sensitive to various drops. And since it's sometimes hard to get OASIS Plus lubricating drops sometimes, which used to be the only ones I could tolerate, it's a relief that I can now use others. I'm just starting experimenting with the others again.
Hair care products, bedding and throw pillows on my sofa were my biggest formaldehyde sources that affected my eyes specifically. Target now sells Oeko-tex standard certified organic sheets that are safe, though I'd ordered Coyuchi sheets online before discovering those. I'm careful to check ingredient labels on hair products and skin cleansers and gave up on conditioner for now because they seem to have the worse irritants. It's taken a lot of experimentation and time to clean up my environment, but it's really paid off. No more pain. But even if you have a type IV "allergy", it may be to some other chemical so eliminating formaldehyde specifically may not be of help to you. It's best to be tested.
My eyelids used to look like the photos in figure 1 or figure 6 here, although also developed a round sore spot inside the lid:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3047907/
Good luck to you with finding out what the cause of your eye problem is. I know the frustration of the search.Comment
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Thank you all for your replies.
I am quite confused as to how my eyes have gotten in this state and so quickly as its only been about a month and hope that with my next opth visit, this time I hope it will help to correct any confusion and misdiagnosis (if any) and that I will get those glands and tear film checked also just in case.
Btw, what is BAK?Comment
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BAK is Benzalkonium Chloride (aka: BAC), the preservative used in most prescription eye meds. It's also used in many OTC eye drops, nasal sprays & gels, household cleaners, etc. It's very bad stuff, in my opinion. My eyes hate it.
http://www.ncbi.nlm.nih.gov/pubmed/22093372
http://www.medscape.com/viewarticle/711467_4
Mary in VAComment
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