A new insight into dry eyes...

Posted , 6 users are following.

...well, new for me, though I expect a lot of Sjogren's sufferers will know at least some of this already.

As mentioned elsewhere, I'd seen two ophthalmologists in the past five months. One spent just five minutes examining my eyes visually, then told me I had normal tear production in both eyes but no oil in the left eye, deducing (without even doing a Schirmer's test) that I had Sjogren's syndrome, for which he said there was no treatment. He also told me categorically I had no signs of cataracts. The second did a very thorough examination, including the Schirmer's, and also gave me a firm diagnosis of SS on the basis I hadn't produced any tears in either eye in the five-minute test. He informed me that the cataract on my left eye was ready for operation, with the other eye not far behind, but that no surgeon would ever risk doing a cataract op on me as my completely dry eyes couldn't be treated and this would cause a corneal breakdown. He ended the consultation by cheerfully telling me not to worry about this!

This morning I saw my third ophthalmologist this year - an eye surface specialist this time. She was incredible. A little wisp of a girl who only looked about 25 (well, to my elderly eyes) and spoke in a shy little near-whisper I had to strain to hear. But she really knew her stuff.

She established via the Schirmer test that I do have some tear production in both eyes, though it isn't enough. After some rather  painful squeezing of the oil ducts under both lids on both eyes, she confirmed her first colleague's opinion that I produce no oil in the left eye and not enough in the right, so the tears I do produce constantly evaporate. (She also confirmed her second colleague's advice - that I do indeed have bilateral cataracts, one of which is ready for surgery.)

When I raised the fact that when I'd had a little cry about something a month or so earlier I'd produced a near-normal amount of tears, she said that wasn't necessarily significant, as tears produced during emotion are far more copious. I only mention this because I recall another poster on these boards saying her opththo had told her she couldn't possibly have SS because she'd burst into tears during the consultation.

This morning's ophtho told me that although I have no corneal scarring, I have significant scarring of the conjunctiva in both eyes, especially the left one - which would account for the constant pain and discomfort in that eye. This is a bit of a mystery. She even asked whether I'd spent time in Africa or Asia as a child (I didn't) because the scarring in the left eye was bad enough to suggest a healed trachoma lesion! She explained that it was the scarring on the inside of my eyelids (where the conjunctival membrane continues, of course) that had blocked up my oil glands and partially blocked my tear glands.

She disagreed strongly with the second ophtho (her boss!) about the reliability of the Schirmer. She said you couldn't diagnose Sjogren's solely on the basis of the Schirmer test. Since my last full inflammation bloodwork was in 2005, when I'd seen the rheumatologist, she immediately wrote me up for the full works. She feels that a negative or inconclusive result would incriminate the blocked oil glands rather than the underactive tear glands, which could be caused simply by old age. If this turns out to be the case, we're going to investigate the surgical possibilities for dealing with the non-functioning oil glands.

In the meantime, she prescribed a heated eye mask (the microwave sort) to be worn for 15 minutes each morning, to try and unstick the oil glands, plus a variety of new drops and cleaning solutions. She strongly contradicted the advice of her other two colleagues - to use carbomer gel or a paraffin/lanolin cream at night - on the grounds that these would just bung up the oil glands even more. This fits entirely with my experience that my left eye was always worse the day after using these products.

The bad news was that she takes the rheumatology standpoint that the only definitive way to diagnose SS is via a lip biopsy. I told her I'd declined this 13 years ago on the grounds I don't usually have a very dry mouth, so assumed it would be normal anyway. She said this was quite wrong - that a positive biopsy shows up specific cellular abnormalities in the salivary glands, which may or may not result in the absence of saliva. Now the rheumatologist never told me that!

Anyway, we're not there yet, as she said she'd only ask for a biopsy if my bloodwork showed a clear positive pattern for SS. I've always said I'd never have a lip biopsy, but now it's all been explained properly for the first time I think I would consider it - especially if it opened the way to more aggressive management of the SS (if that's what it turns out to be) so I could have the cataract ops. The sight in my left eye is now deteriorating rapidly, with the right one coming up behind it, so not worrying isn't an option!

I have another appointment with her in three months, which will give enough time to see if the conservative management (hot compresses, eye cleaning etc.) is working, and whether or not SS shows up on the bloodwork. Generally feeling a lot better about everything this evening - in spite of having a return match with shingles after the last one 20 years ago!

0 likes, 6 replies

6 Replies

  • Posted

    What a thorough and well explained narrative, thank you so much!!!
    • Posted

      Thanks Connie, I'll be happy if even one person finds it helpful. I certainly learned a lot in half an hour this morning!

    • Posted

      Oh my yes I wish I had all this info when I went to my specialist last month. When we are lucky enough to find that special doctor who takes his/her time to examine and to explain, that is priceless! Thanks so much for sharing. 
  • Posted

    I have SS. My eyes are extremely dry. I now have Pterygium in both eyes due to SS and dry eyes. If you do not know about this please google it. It can happen to anyone that has SS and very dry eyes. It is awful!!!!!!!!!! I am trying to make everyone aware of it. I pray no one  else gets it. It is also sometimes called surfer's eye because it can also be cause by UV rays as well as dry eyes.

    • Posted

      Thanks Susan. I did actually look up pterygium the first time you posted about it - especially since a UK ophthalmic optician I saw at the beginning of this year expressed concern about what she described as "a sort of wrinkle" that appeared on the conjuctiva towards the inner corner of my left eye (the painful one) when I looked to the right.

      However, most of what I've read on the topic (so far anyway) suggests that it starts on the edge of the iris and gradually spreads towards the inner canthus. Certainly I can't see anything on the iris. I did ask the second ophthalmologist I saw about the "bump" the optician had seen but he said he couldn't see anything. I admit I forgot to ask today's doctor about it, but she seemed so bright and well-informed, I think she would have mentioned it herself if she'd seen something. I'll make a note to ask her about this when I see her again in October.

      Whereabouts on your eyes did yours start, and what did they look like?

       

  • Posted

    Mine started on the outside edge of the white part of my eye and has progressed to the edge of my iris. It looks like it may be starting to come on to the iris now. My eye doctor saw it but did not tell me. I found out about it from my skin doctor when he saw it three weeks later.  I was really angry I was not told!!! I saw an eye surgeon. He told me I had one on both eyes. He does not want to remove it now. Some times they grow to the iris and stop. I don't think mine is going to stop. I was told it grown slowly. Mine is growing faster.  It starts with a light cream rough spot on your eye usually in the corner of your eye. As it grows it may feel like you have something in your eye. At this point it does not hurt. Keep a close watch on your eyes. Problem with severe dry eyes when removed it will most likely return with in a year. I am not sure how many times they can remove it without causing damage to eye muscle and cornea. I found out a friend's husband had one removed caused by UV rays . That was three years ago and has not come back yet. You probably will not have this but keep a check anyway. Best wishes.

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